As a patient of Dr. Cheney’s, I had access to his frequent emails discussing his thoughts and treatments regarding chronic fatigue syndrome (ME/CFS). In writing this article, I went back and read most of these emails. For quite a few of them, I had to research the acronyms and spend lots of time trying to understand them. I’ve tried to condense some of that knowledge into this brief summary.
After a year seeing Dr. Cheney it’s time for Chris to make a decision
This document has four parts:
- A list of the acronyms used throughout so it may be a little easier to understand.
- A summary of Cheney’s analysis of what is the underlying problem of ME/CFS
- His current treatment regimen (as of March of 2015)
- My comments on the treatment regimen and costs
Acronyms
- IVRT – Isovolumetric relaxation time is an interval in the cardiac cycle from the closure of the aortic valve to the onset of filling by opening of the mitral valve. It can be used as an indicator of diastolic dysfunction. Dr Cheney measures it using Doppler echocardiography. He believes increased IVRT is a key feature of chronic fatigue syndrome.
- GSH/GSSG ratios – The ratio of reduced GSH to oxidized GSH (GSSG) is an indicator of cellular health.
- PC – Phosphatidylcholines are a class of are a major component of biological membranes and can be easily obtained from a variety of readily available sources, such as egg yolk or soybeans. Lecithin is made up of Phosphatidylcholine.
- NADPH oxidase (nicotinamide adenine dinucleotide phosphate-oxidase). NADPH oxidase generates superoxide by transferring electrons from NADPH inside the cell across the mitochondrial membrane and then coupling them to molecular oxygen to produce superoxide anion, a reactive free-radical.
- ONOO (3-Nitrotyrosine or 3-NT) Nitrotyrosine is a product of tyrosine nitration that is mediated by reactive nitrogen species such as peroxynitrite anion and nitrogen dioxide. Nitrotyrosine is identified as an indicator or marker of cell damage, inflammation as well as NO (nitric oxide) production. Nitrotyrosine is formed in the presence of the active metabolite NO. Generally in many disease states, oxidative stress increases the production of superoxide (O2−) and NO forming peroxynitrite (ONOO−) a destructive free radical oxidant. Research shows that nitrotyrosine levels can be reduced by N-acetyl cysteine, which is a precursor to glutathione, one of the body’s primary endogenous antioxidants
- Peroxisomal dysfunction – peroxisomes make myelin (white matter) and de-corrupt cell membranes
- CNS – Central Nervous System
- ATP – Adenosinetriphosphate; it supplies large amounts of energy to cells for various biochemical processes,including muscle contraction and sugar metabolism.
Chronic Fatigue Syndrome – Dr. Cheney’s Central Hypothesis
If you ask Dr. Cheney what all ME/CFS patients have that is not normal, you are liable to get a difficult to follow discussion so I am providing my understanding of his hypothesis. The key process in ME/CFS involves a breakdown in the mitochondria where superoxide is reduced to water.
This breakdown leads to a host of other physiological effects including low GSH/GSSG ratios, higher levels of ONOO, low cardiac output and corrupted cell membranes. The corrupted cell membranes are responsible for a leaky Blood Brain Barrier (BBB) and ultimately neuro-inflammation, as well as a leaky gut and gastrointestinal issues. Low GSH/GSSG leads directly to low NADPH which reduces peroxisomal function leading to the diffuse white matter losses seen in NeuroQuant MRI scans of the CNS.
Dr. Cheney’s gold standard test of whether a person has ME/CFS is performed using a 3D cardiac echocardiograph machine. He measures IVRT before and after the administering of supplemental Oxygen. If there is a negative response to oxygen as measured by the change in IVRT, then the person has ME/CFS. He, also, uses the IVRT response to test his various treatments. For example, tap water produces a negative IVRT response, while Fiji and Iceland water produce a positive IVRT response.
The inability to reduce superoxide rapidly to water faster than it is produced is also found in HIV. In two articles produced in 2002/2003, it was suggested that crippling superoxide detoxification is a survival mechanism that viruses which shift the cellular environment to a more oxidized redox state use. The human response to this redox shift is to down regulate mitochondrial function to produce fewer electrons and therefore less superoxide – but also less ATP. Those that can do this better are more stable though they are functionally limited – ME/CFS. Those that cannot, are very unstable and far sicker.
From Cheney’s perspective, we are lucky we have ME/CFS relative to some other diseases. The difference between ME/CFS and diseases like cancer, MS or lupus, is that ME/CFS is fundamentally an adaptation to prevent disease and death, and is therefore potentially reversible. This is played out by spontaneous recoveries that occur from time to time. Dr. Cheney, however, has not found a cure or seen anything that reverses the oxygen toxicity to normal, except Stem Cell therapy, which he tried in 2010. However, the results only lasted one month and cost $30,000 per patient.
Cheney thinks ME/CFS research is fragmented because of the mistaken belief that CFS occurs for many different reasons and produces distinct sub-populations. From his perspective there are no sub-populations; every person with ME/CFS has Oxygen toxicity as described above.
Dr. Cheney’sTreatment Recommendations
You can refer to my first two articles to see Dr. Cheney’s basic lifestyle modifications and baseline treatment recommendations. Please note that all Dr. Cheney’s treatment recommendations are based on individualized testing using IVRT. The recommendations given here are a generic approach.
Membrane Therapy
Enhancing cellular membrane health is one leg of Dr. Cheney’s basic approach
This recipe is for microsomalized PC with added glucose to support NADPH and glucuronic acid production. Glucuronic acid is formed when glucose interacts with oxygen and creates a slightly different structure, through a process known as oxidation. This acid’s main function is to combine with toxins and eliminate them from the body. The formation of glucuronic acid takes place in the liver.
- 18 tablespoons of spring water (Iceland Springs of Fiji)
- 4 tablespoons of Liquid PC (BodyBio)
- 1 tablespoons of organic dextrose (glucose) derived from Tapioca from www.naturesflavors.com
Mix in a mixer (VitaMix is the best). It makes an 8 day supply that should be kept in the refrigerator.
Dose is 3 tablespoons per day (2 tablespoons in AM and 1 tablespoons in PM) with or without food
The membrane therapy will help remake cell membranes and reduce BBB leaks which underlie neuroinflammation driving many of the symptoms, especially pain and sleep issues.
He also recommends adding Butyrate at one capsule twice a day with meals. Butyrate helps improve cell membranes and is a gut anti-inflammatory and gut energy source and gut anti-fungal. Probiotics are also good at producing Butyrate. He recommends using Butyrate for the first month and then switching to a high quality probiotic.
He also recommends Bentonite Clay at 1 teaspoon in 3-4 oz of Spring Water given daily with meals. Bentonite Clay can cause constipation so add 1/2 teaspoon or more Epsom Salts to the Bentonite Clay if it is constipating. Bentonite Clay binds toxins in the gut including toxic lipids mobilized by membrane therapy.
Get Bentonite Clay from www.uniquehealing.com and get the bag of Bentonite Clay powder.
Dr. Cheney’s Anti-inflammatory Protocol
- Quell (High EPA) fish oil from Douglas Labs (www.douglaslabs.com) — one capsule
- Colavita Olive Oil (One tablespoon) – any grocery store
- RiboGen (one capsule from www.lifeextension.com or www.amazon.com)
Reducing inflammation is another
Take 1) 2) and 3) all together once or twice per day with or without meals plus 4) Wobenzyme N — 4 caps in AM on empty stomach obtained from www.amazon.com
1) 2) 3) and 4) together act as a multifaceted anti-inflammatory approach and will help your pain. RiboGen or 3) gets at the fundamentals of your low energy state. Ribogen improves redox support and thereby indirectly improves NADPH production.
Cheney is currently looking into combining Cannabidiol (CBD) oil with Porcine Brain Cell Signaling Factors (CSF) to produce a skin paste to help reduce neuro-inflammation (via antagonism of the CB1 receptor). CBD is used to treat seizures (medical marijuana) and is being tested for other conditions.
Electro-Magnetic Forces (EMF)_
Cheney also keeps reiterating on the need to protect yourself from the harmful effects of EMFs. He believes excessive EMF exposure impairs the successful buffering that free electrons provide as it interferes with membrane function and therefore is pro-inflammatory. He believes it also interferes with superoxide dimutase’s (SOD) electrostatic field which impairs it from transmuting superoxide to hydrogen peroxide (the first step in the process of converting superoxide to water).
He recommends not using cordless phone as well as the use of kill switches and Faraday Cages in the bedroom. He asserts that turning off their bedside cell phones and cutting power to the bedroom at night via the fuse box helps ME/CFS patients sleep better. The fact that sitting in front of computer screens exhausts people with ME/CFS suggests EMFs are a problem.
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My Comments on My Time with Dr. Cheney
One of the good things about Dr. Cheney is that he is always trying to find the next thing which might cure/help people with ME/CFS. For example, when I first went to see Cheney, he was very excited about VIP (Vasoactive Intestinal Peptide) which has a very positive affect on IVRT and the 3D-echo and is part of the treatment used by Dr Shoemaker in treating mold. Over the course of the year, though, his comments and his recommendation of this as a treatment disappeared.
Prior to that, he was looking at Nagalase levels and treating it with GcMaf. This, also, had limited discussion over the year, but more so than VIP.
Dr. Cheney was creative but a lack of results combined with increasing costs lead Chris to stop seeing him after a year.
Another good thing about Dr. Cheney is he would post answers to questions submitted by his patients to his entire patient population if he thought the question and answer would be helpful. Many of my questions were answered this way.
The bad part of seeing Dr. Cheney for me was the cost. He has now raised his rates to $810 an hour. That and the fact that I did not see any benefit from his treatments are why I decided not to continue as a patient with him after 1 year.
My next one-day visit (he requires at least one visit a year) would have cost me $5000 – $6000. The cost of the treatments that I tried over the course of the year was prohibitive as well. VIP cost $300/month, B12 – $300/month, GcMaf – $720/month, cell signaling factors – $400/for 2 months. I tried many of these things over the course of the year, gave up on most due to the cost and lack of noticeable improvement.
Also, having health insurance was useless, as they covered none of the treatments and little of his original visit. In fact, I am still fighting with them.
Over the course of the year, I spent somewhere in the vicinity of $15,000 just on Cheney and his treatments and despite a healthcare plan that was supposed to allow me out of network coverage after I met my $5000 family deductible, I got about $1700 back.
Perhaps, when I win the lottery, I can implement all of the things that could be potentially helpful. What I shared with you, I think is a somewhat affordable offering that provides core elements of his treatment plan.
Honestly, since I stopped all of my various doctor’s treatments and went on my own diet and supplement plan, I have felt the first noticeable improvement in my health in 2 years. The diet plan is simple, but not easy. Vegan, no sugar, no gluten. Some of the supplements I am taking overlap with Cheney’s recommendations, but I think the diet is the most important aspect. I base that on a lot of reading but also from knowing real people who have either fully or largely recovered from conditions that are similar to or the same in nature as ME/CFS/SEID.
Check out Chris’s other blogs on his time with Dr. Cheney
Cucko
The Brooklyn Bridge is for sale.
Has anyone made more money off of patients than Cheney? Has any of his ideas ever worked for ANYBODY? Seems like a smart guy, but looking the facts objectively doesn’t seem to support that he is worth even 1/10th of what he charges. As always, caveat emptor!
Several people below seem to have gotten benefit from Cheney’s recommendations.
If they have improved they are either in their teens or on their deathbed and are afraid to leave him!!!!!!!
Really appreciate all of this info! I was his patient for 4 years, never understood anything he was saying (lol) loved him to death because he fought for me. Now, I am broke but he did get me out of my bed! He is a mixed bag of good and not so good. Im not sure if I don’t regret spending all of that money, but hope is doing well since his heart transplant!
He and his heart are doing fine.
Thanks Chris – kudos to Dr. Cheney for trying to figure this out, but it sure is discouraging to read your story. I had wondered if anyone with CFIDS had tried stem cell therapy after reading that David Foster’s wife was in Europe getting that for her Lyme. Glad your diet is helping – I’m vegan but that alone has made no difference. There’s so much sugar in stuff one wouldn’t think contains sugar – do you count your grams or just avoid added sugar? I wish large scale testing could be done on the hearts of those diagnosed with CFIDS. Good luck!
Check your labels on everything for sugar or sugar substitute Sorbitol just as bad. Other than Stevia.
Alot of meds have sugar in them. You can have a little-but a little adds up.
If I want something sweet I just add a blue berry or a strawberry.
I do use a wonderful Protein Powder called Love and Peas. Gluten free.
I mix Berries (All) in it and it really satisfies any sweet craving-plus the protein
helps.
You have to be your own ADVOCATE.:) DIET IS EVERYTHING!!!
Carole
Good Advice Carole.
Hi Betsy,
Let’s change vegan diet to a non-processed food diet where you control what goes in your food. A very good place to begin with the diet is a book called the PH Miracle by Shelley Redford Young (Author).
Other good books for reference include:
The China Study by T. Colin Campbell
Whole: Rethinking the Science of Nutrition by T. Colin Campbell
Clean and Related books by Sebastian Junger
The Autoimmune Solution by Amy Myers
The Wahls Protocol: How I Beat Progressive MS Using Paleo Principles and Functional Medicine
Juice : recipes for juicing, cleansing & living well by Carly de Castro
Some of these authors also try to sell you supplements – you do NOT need to buy the overpriced version from these persons website. I would recommend rotating good quality probiotics and trying some antifungals (garlic is good) supplements.
This will not necessarily cure CFS, however, I have seen people who were sicker than I that are now more normal than I. So, never say never. If you want to know more, let me know and I can try to put something together.
Thanks Chris – I know what you mean, a person can be vegan and still eat a lot of junk. I’ve read The China Study and the documentary Forks Over Knives is good too. The PH thing is very controversial but some folks swear by it….
Chris Have read some of the books. Good for you -doing your research.
I quit reading anything that tries to sell me anything. Including diet books.
Also everyone needs to know All Natural is not always not all natural.
I have found things at Whole foods that found out later had all kinds of ingredients in them that I could not tolerate. Not natural but additives.
Also be careful of your vitamins. Have found 3 Omega 3’s that have high Cholesterol levels. Also high sugar content in some.
The Juicing Bible is a good book. I love the juicing with the Protein Powder.
It always gives me a jolt of good Energy.
Thank you for the good tips.
Another good book- WORST PILLS , BEST PILLS by Sidney Wolfe MD
If you are Gluten intolerant as I am, they have a wonderful Millet/Flax bread at Sami’s bakery in Tampa. I order all mine from them.
Carole
Thanks Chris for sharing.
I have also find being vegan and gluten free to be essential. Im working on the sugar free part. Ive been on this diet for over 2 years now. Much has improved. But I still have my issues. Sometimes there are flares that happen and I cant seem to figure out why. But I’m so much better than I was. Its worth sticking to the diet. Make sure you get enough plant protein. There are some good vegan protein powders for smoothies. Try not to go to high with your fats. I really notice issues if I do that. Hope it works as well for you as it has for me.
Issie
I was going to wait to reply to Chris but couldn’t. I saw Cheney years ago in Charlotte.
I had my own regimen then and he did little to change it. I was on Immune Globulin and B-12 from infectious disease Dr. I did think he did a thorough physical. Blood work, tests and Neuro
check.
When I went back to see him in Asheville- years later he was fixated on the heart. Did nothing for me but Echo and told me I was in heart failure. I had to ask for blood tests. I was devastated. Went to one of the two top Cardiologist here and they said his Echo machine evidently was so outdated they could not read the report. Tried to find a machine that would print it. They said I had NO HEART FAILURE
AND HIS THEORY ON OXYGEN WAS CRAZY. I at that time was having some heart palpitations. Since then have gone on a CPAP sleep machine with OXYGEN and they have all stopped.
I like Chris- went on my own research and am on a Plant based diet-no gluten, no sugar,no dairy
No meat of any kind. Many Probiotic -Best one is VSL#3 and am feeling much better. The CPAP sleep machine has helped me more than anything , other than the diet.
Many people that are having inflammation can help themselves alot by not having Meat, sugar or Dairy . It really is not that hard. That includes Gluten.
Back to Cheney. I think after he had his Heart Transplant that became his FOCUS.
I wasted much money on nothing that helped. He spent much time talking about himself and his family.I would have to interrupt to get back to my issues.
This was the last time I saw him . His fees are Ridiculous and not worth it.
He is now making house calls to patients. Two I know of both have been diagnosed with Heart issues. Proved to be not true. Of course you must pay all his expenses.
Not the Dr. I saw in Charlotte years ago.
Carole .
Cheney infers from his experiences while awaiting for his heart transplant. He experienced sleep, fatigue, and digestive issues which were similar to his ME/CFS patients and thus was born why he focuses on low cardiac output that for him went away after his heart transplant.
Carole, your report on Dr Cheney combined with Chris’s report are both discouraging. Cheney seems to be into some possibly non-viable diagnoses and treatments. I feel as if something is wrong with my heart (heart failure?), but apparently I don’t have clogged arteries according to a highly radioactive test I had. I’d like to find out what, but don’t want more radiation. And if Cheney’s machine is out of date, getting his diagnosis wouldn’t be reliable.
I’m dairy free and gluten free, and I can tell that they both make a difference – no more repetitive stress injuries and related inflammations. But going vegan? That would be really hard for me. I’d need to see some research before I’d try that because at the moment I’ve been doing low carb – huge difference. Also I can’t eat corn or quinoa. So vegan would mean lots of beans and soy. Oy!
I’m almost sugar free. I hope it makes a difference.
I’m interested that you do CPAP plus oxygen – never heard of it. Oxygen without the CPAP might be more tolerable. I did CPAP for 9 months and it made a difference – I slept better. Then I stopped and continued to sleep better. Sometimes I think I should go back on the CPAP, but it is rather a terrible adjustment.
Thanks for your comments.
I thought something was wrong with me Cardio wise also. The day Cheney checked me I had walked 2 miles and was not out of breath.
He was dead WRONG on the diag!!!!
If you have had a Nuclear stress tests that is the most viable other than a Heart Cath. And you were ok I would suspect something else and consider the Cpap again.
It could be Thyroid, Hormonal,.Lung issues or Asthma. I had all these checked out. They disappeared one by one as I continued the Cpap.
The Cpap helps you use your Oxygen instead of losing it through the mouth or choking while sleeping. All of the sleep issues affect your heart.
I also sleep with my head/ chest elevated.
You need to be evaluated by a Sleep/Pulmonary Dr. for insurance to
cover the cost of treatment and machine.
Hope this helps. Again the diet is Paramont. I also found by my Environmental Dr. I had no Adrenal reserves and was put on a Comp Adrenal supplement. Still the CPAP is what saved me.
None of these were ever addressed by Cheney.
Carole
Carole –
Can you share more about the adrenal supplement that you are taking? Thank you!
It is compounded for mny Enviromental MD here. Called
SperChromePlex I take 1 drop liquid whch is 1000 mcg of Chromiumcomplex with Niacin. I mix in
small amount of water.
Used to get it from Wellness Pharmacy then she started compounding it. They ran a Thyroid, hormone panel
my adrenals were non existent.
This really helps.
Also do 4 drops Mycelized Vit A in water.
5 mg DHEA and 1000 Pott Glutonate. VSL#3 Probiotic has just about cleared my gut issues.
Plus NO Dairy.
Hydroxy B-12 inj daily sub Q.
Could really tell a difference when I started the Adrenal.
This was from my Environmental Dr. Susan Tanner.
I am low in Thyroid-but have not found one I can take
with out my heart racing.
Dear Carole, I’ve had CFS since ’94 and at first my cortisol levels were high and then burned out about 10 years later. I was on small doses of Cortisol for several years and now can report that my Adrenals have apparently recovered and I no longer take the cortisol. BTW, I take armour thyroid for my hypothyroidism. Try that one? Course my BP has gone up of late…. only supplement that seems to have helped my energy/stability at all is Acetyl L-Carnitine and that may be a placebo effect. Who ever knows? marcie
Marcie- Have thought of trying the Armour thyroid.
The one I took was compounded and don’t think the formula worked for what I needed.
They will want to run another test you know!!!!
Carole:)
You do not need to do Soy or beans if you go vegan. You can also try a Paleo diet. I am recommending the PH balance diet as an exclusion based diet that you can try for a few months and see how you feel. You can then add different foods to see how they affect you, but keep that as a baseline. You can get your protein from nuts (only almonds if you do PH balance) and sprouts, coconut, plant protein powders.
I use a Protein powder and Almonds. Really do not have any cravings since I started the Powder.
I mix everything in my Smoothie. Spinach, Kale nuts Coconut water not milk, blueberries, Raspberries, celery, carrots and apples.
Avocada. Sometimes even Beans.
Wonderful. I use little Soy if any. I drink a blender full a day in spurts.
Carole
One thing everyone needs to realize is Cheney-even though has had a Heart Transplant -is not a Cardiologist!!
I learned this the hard way- he did not know what he was talking about.
Carole
Forgot to mention- Cheney also said I had POTS. He put me on High doses of Sea salt and water. My BP ( which is usually low shot up to dangerous levels).
I found out I have a Vestibular disorder where the crystals in my ear drums move to or are displaced and cause me dizziness. I do exercises and see an Osteopath and they dissipate.
I could not take or use any of the meds he reccomended.
Carole
carole, how much does the machine cost and where do you get it from – can you get it from the uk please? thanks
You can find lots of information on the web about cpap machines. They are usually helpful if you have sleep apnea.
Chris- You don’t have to have SLEEP APNEA to qualifiy for a Cpap
user. I don’t per say have sleep Apnea. I do have a breathing disorder during sleep and do not fit the profile. I weigh 100 lb.
However, I was going to sleep easily and sleeping but waking up several 40 times during the night and during those times quit breathing.
It was weighing heavily on my Cardiac system and Immune system.
Fortunately I found a good Sleep Specialist that realized what may be going on.
Don’t try to diagnose yourself.
Have a SPECIALIST DO IT AND GET THE RIGHT DIAGNOSIS.
THIS COULD BE CRITICAL.
Carole
Zip- You have to have a RX from a Pulmonary/Sleep specialist here in US.
They did an overnight sleep study so they will see where you are with your sleep disorder. Not difficult at all . Just elctrodes on all night and you are monitored.
Then they Titrate your machine to the level you need and mask you prefer. Mine has a humidifier on it, which I love. I started improving in about 5 days with my Palpitations.
My Sleep specialist also cks me every 3-5 mo to make sure machine and
I are on the right track.
I use a ResMed Machine. I knows there are many brands. I just like this one.
Insurance here pays well on mine and any new supplies I need.
I truly feel like this Dr. and this machine saved my life!!!
The machine is not cheap. But like I said the insurance paid well on it.
I have had it for 2 years and never had a problem.
Seems like it was $300.00 a month for a year. Then you own it.
May be cheaper in the UK.
Had another friend who was diag with AFIB and they wanted to do Ablation surgery on her. She refused and I told her to have a sleep study done. She did and went on the CPAP machine and the AFIB stopped completely. Her Dr. who told her she had AFIB in the emergency room is stunned. That was a year ago and she is doing well. No meds.
Hope this helps.
Please keep me posted.
Carole
Zip, in the U.S. CPAP machines are usually covered by health insurance. Many people find them hard to adjust to. But they do help with sleep if the problem is apnea. I bet you could find a second hand one online. I have lots of advice on how to adjust to using it. Mine is actually a bi-PAP machine. Instead of continuous air pressure, you have alternating higher and lower air pressure which makes it easier to breath out. With continuous air pressure it’s an effort to breath out. It helps to have the right mask. And it helps to practice using it during the day so that you don’t get anxious in the dark at night.
Mine cost $2500. And the humidifier is important. And heated tubes was important.
I’m in the US, just received my cpap machine on June 12th. My tests had shown that I wake up 16x per hour. That means that I was not sleeping long enough to get into stage 3 sleep. And that my oxygen level was only at 87% during sleep. I have the most up to date machine now available. It does include a humidifier to keep me from getting dried out. I had been waking up with a sore throat due to snoring. It’s preset for me at a level 4 as I fall asleep and titrates up to my personal setting of 8 after a bit of time allowing me to fall asleep with low pressure. The new masks are not as tight fitting as the older models, the machine doesn’t make much noise – just white noise. The first night I would wake up when I snored and a small blast of air was set off to my mouth. But after that initial night it was much easier to get use to. Just getting the proper amount of oxygen during sleep is helping. I am starting to feel better as I wake up. I’m also staying asleep at night, which was an issue for me. Now if I could only get on a sleep schedule I’ll be doing a bit better. My insurance (Obamacare) is paying 100% of the required 3 month rental. They require 70% compliance, after that they will pay for the cpap and it will be mine to keep. It has a memory card that I need to take to my doc to read & report to the ins co.
A few years ago I came off of ambien after being on for 8 years. It knocked me out but did nothing for my quality of sleep. PS: I love my Vet and would love a dr for myself that was as thorough!
Zip, if you think you might need the machine, perhaps having your O2 measured during the night would be a first action. I had PVC’s ( took a long time for me to get anyone to pay attention and it was not the cardiologist but rather a cardiac nurse practioner who had the sense to monitor me for days) and this was tested. The NP told me my O2 dipped just below normal for a very short time, “not near enough to warrant a sleep study.” From that statement I take it just putting this thing on my finger at night in my own house would be the first thing to do. I eventually had an ablation – nothing to it, was awake the entire time, 40 minutes, total stay 4 hours. Problem fixed. Before doctors “poo pooed” PVC’s but now they know they can eventually cause heart damage if there are too many of them. Medicine actually made mine much worse. If anyone reading this has them to any degree, they are not necessarily benign as you might have been told! Insist on a multiple day monitor.
The reason you need a Pulmonary /Sleep specialist is to rule out anything serious going on. I had quit breathing 40 times during the night and it was waking me up-with a jolt . I did not realize it.
You do the sleep study then you know what you need to treat it.
They will catch anything else also.
Good luck!!!!
Carole
Sleep study! Yes! Important!
I had a 3 week Heart Monitor done by my Cardiologist that I see now. Very thorough.
Good for you having your PVC checked out.
Any issues with heart now?
Carole
Hi Carole, I guess my heart is ok since my ejection fraction went from 45 to 57 after the ablation. My guess is that the cardiomyopathy diagnosis was based on the pre ablation ejection fraction.
Are you asking about a cpap machine?
These are used for people with sleep apnoea. A sleep clinic trial arranged via a GP is the usual line of approach here in Australia. I have a friend who was quite unwell with a variety of ‘apparent’ issues, but the introduction of a cpap machine has her looking and feeling much better. They are cumbersome (and perhaps some more updated versions available) but worth a try to allow for better rest and repair during sleep hours. Good luck
Zip, in the U.S. CPAP machines are usually covered by health insurance. Many people find them hard to adjust to. But they do help with sleep if the problem is apnea. I bet you could find a second hand one online. I have lots of advice on how to adjust to using it. Mine is actually a bi-PAP machine. Instead of continuous air pressure, you have alternating higher and lower air pressure which makes it easier to breath out. With continuous air pressure it’s an effort to breath out. It helps to have the right mask. And it helps to practice using it during the day so that you don’t get anxious in the dark at night.
Carole,
My doctor also told me to take salt in the form of tablets. My blood pressure, which was low-ish went up to just above normal. I compromised by just eating salty food as much as I want.
Since I am on the Vegan/Gluten free diet my BP stays low to normal.
I do have some salt. Not like Cheney rec.
I DON’T HAVE POTS AS CHENEY SAID—HE DID NO TEST FOR IT.
JUST LUMPED EVERTHING TOGETHER.
Thanks,
Carole
Has anybody had improvements on any of the many protocols Dr Cheney has tried over the years?
If I could choose any protocol to try; assuming I had adequate funds it would be Dr Jay Goldsteins
Instant Remission Therapy. Unfortunately its no longer available, but you would find out fairly quickly whether any of his many drugs he used would be of any help, and not keep you hanging on year after year being used as the guinea pig for the many experimental protocols being tried by some of the other ME specialists which never seem to go anywhere.
liverock,
You can count me as one who got material help from Dr. Cheney, in the days in his Charlotte office. I saw Dr Cheney in latter half of the 1990s, before his heart problem.
My digestive tract had shut down totally, little nutrition absorbed and not functioning mechanically. Dr. Cheney treated that symptom with success. Over about 6 months homeostasis was again established in my digestive tract, and a diet I could eat was set up. Along the way, I added one food at a time to check for food reactions among the allowed foods. I take some vitamins and used to take B-12 shots — but I got too tired to do them, ah well. The only sugar I can have is from whole fruit. That is hard — whole fruit is delicious, but so are many sugary desserts. That takes the most will power when I visit my family, the firm no to desserts or any sugar-added food. I could not give up chocolate as the craving is way too high, which has been my challenge, to find chocolate without sugar. I am eternally grateful to have a diet that works for me. No beef or pork of any kind, but I can eat fish, poultry and legumes for protein. I do not have problems with dairy. Right now I have plain yogurt. After about a decade of perfectly following the diet, I broke down and had too much ice cream (for the chocolate, after my favorite frozen yogurt was discontinued — somehow that food worked for me) and I reverted to the state when I went to see Dr Cheney, which I called rolling on the floor pain in the gut. I got myself back on track, and no more ice cream, chocolate or otherwise. I tried one serving of ham at a Christmas feast, and I was sick right away. He was right about me and the diet I needed.
My sleep problems are more intractable. He did suggest adding a few drops of doxepin to the clonazepam suggested by four other doctors, and that worked for me immediately. I had a sleep test before and after. The combination restored dreams and deep sleep to me. That second sleep test, and a third one later showed I woke up up ever so briefly from every stage of sleep all through my time of sleep, which mystified my sleep specialist. About 200 times in a sleep period. Probably now I need some different mix of medications, but the sleep doctor gave up on me because of my irregular sleep hours (could not get to sleep at night except by chance) and then she retired. I have no replacement for her so far. There was no change in blood oxygen during my sleep at all on any of the tests. So I never tried a CPAP machine.
My initial visits were covered by my insurance of the time as out of network, and I could afford the balance at that time. No other doctor has helped me on any aspect of M.E./CFIDS in 25 years. My need now is to gain physical function. I am out of breath from the least physical activity, and wiped out by emotional/intellectual activity and need weeks to really come to some new balance.
Carole — thanks for your clear explanations of the change in Dr Cheney’s protocols from Charlotte to Asheville. I am glad you have found help from the protocols you follow now.
Lisa Schict — very glad to hear you have had significant help, and could get out of the wheel chair.
Sarah
Sarah- This is a minor way t help you get back some muscle strength.
Just do stretches (yoga) in bed. You don’t have to get up to do them.
Just start with 5 min for a week. Anything that will improve your circulation and improve blood flow to your organs will help.
I think because I was an athlete before-I pace it but do these sometimes
4-5 times a day for 10-15 min. You can also do some of these sitting in an uprite chair.
All can be done laying on your back and you are strengthening your back and your legs. MAJOR CORE AREAS.Particularly before you get up in the AM.
I will be glad to list some of them as much as I can if you need me to.
Particularly the neck issues as it has stopped my dizziness. I also use an Osteopath about once a month.
Since you get out of breath easily start with them in the bed and see how you do. Take deep breaths as you pull legs to you-then blow out as you hold the movement.
Let me know if you think you can try these.
Better
Carole
Sarah- (think some of my messae was cut off) 🙂
VSL# is a wonderful Probiotic. You can order from Amazon.com. Poultry
is really full of alot of hormones and Antibiotics I have not had luck with any meat. Don’t even want any anymore.
Even the ones they say are hormone free are not always.
I am not taking any drugs to sleep. They always come back to haunt you in some way. Melatonin or 5HTP work well for most people and is not habit forming. Also Autisim Coach has Our Kids Magnesium cream to put on back of legs to help sleep also.
Hope you will be reevaluated for a sleep study. They are really up to date now-and may help you stay off the meds.
It really gives me more energy too.
Get Better
Carole
Thanks, Carole.
That is a good idea about starting out the exercises in bed. No excuses that way, and five minutes is possible.
I take melatonin already, for years. I am never sure if it helps, but it seems not to hurt and the sleep specialist is the one who suggested it.
With all my diet changes, I do take a probiotic, called Microplex, from American Biologics. It seems to be good. I took it daily for a long time, now it is every other day. If I stick to the permissible foods and buy organic, which I do, I get nutrition, and no pain from digestion, knock wood!
It is the muscles that are the big problem, getting out of breath so easily, and then being knocked down / wiped out / showing the symptoms of M.E. for so very long before I am really able to do the next thing. So I will try your idea of five minutes in bed. I have learned enough exercises over my lifetime, before getting sick, of course that I can think out a sensible list. Plus I watched the videos Dr Klimas posted with Dan Moricoli for good ideas. When I get my act together, I will get the videos he has made of yoga lying down.
Sarah
Dear Sarah,
Just for info, they’ve got a sleep study that you get to take home and hook up simple-like when it is your time to go to sleep….like 5am if you’re like me a lot of times. And I’ve been told that it’s covered by most health care plans. My Medicare did and it was a piece of cake of a test doing it on my own time and I found out ironically that after 15 or more years since diagnosis of severe sleep apnea that I no longer had it. Go figure! But it reminds me that in my being sick with SEID since ’94, it’s had stages and progressions and not remained the same. Think we’d all find that. If you have normal pulmonary tests, then I so encourage to increase your activity level in small increments but do it!!! You’ve got to keep your muscle tone. Well, it’s pretty important anyway. Much luck and laughs. marcie myers
I like your sign off. Much luck and laughs to you too.
In my opinion, doctor’s like this need to be paying YOU for all their experimentation.
The STRESS he caused me by telling me I was in Heart Failure really shot me down. That is why I chose to go to 2 different Cardiologists.
Both said “HE DIDN’T KNOW WHAT HE WAS TALKING ABOUT”
PLUS THE MONEY I SPENT.
Carole
In 1992 I was referred by my primary care physician to the Cheney Clinic in Charlotte, NC. At that time it was very difficult to get an appointment with Dr. Cheney. He had another physician who was part of his practice. I went with the “unknown” Dr. Charles Lapp, who ended up leaving and establishing his own practice at what is now the Hunter-Hopkins Center. Dr. Lapp quickly established himself as a brilliant clinician and true expert in the field of CFS/ME and fibromyalgia. I never looked back and it was one of the best decisions I ever made. I have recovered so much that I just returned a couple weeks ago from a hiking trip in Rocky Mountain National Park for one week. Life is amazing now. So you never know.
Carol
Great to hear that Dr. Lapp fixed you up! Wonderful.
Rachel
Carol- I saw Dr. Lapp at the same time I saw Cheney. I really liked him.
I am not really at a place where I want to start over at the moment.However, I have considered Dr. Lapp. He is not too far away.
I have heard good things from patients. My info is he specializes in POTS?
Don’t know whether that is positive or not. I like that he is detailed.
Actually know a nurse that used to work for him.
Thanks for the info. I do know I will NEVER go back to Cheney.!!!!!
Carole
Carole,
Dr. Lapp specializes in CFS/ME and fibromyalgia. Carol
Hate to say this- but I think if I had stayed on Cheney Protacal-I would not be here today!!!!
OKAY, we get it Carole. What you were doing there in the first place when you could walk ‘2 miles a day’ is beyond comprehension.
CFS never has Been or Will be ME, a proper serious diseases. Amercan cfs definición, doctors and medicaciones a complete ripoff. People talking about diet, suplements, etc just a heavy joke, not only superficial but a complete lack of respect. Would anyone just daré talking diet in connection with AIDS, MS, ADN, PD, etc. A complete frivolity, our true interests are not defended tris way, Impossible to be taken seriously with such nonesense.
Javier- No diet is not the whole issue. There are many elements. When you have a patients that come in that are eating junk and overweight with bp issues and other things. No you are not going to take them seriously.
I have had CFIDS since 1987. Had probably 10 years of remission????
Was on Immune Globulin, and B-12. When they quit making the Immune Globulin ‘
I started going down hill.
I wish more people would address the simple things like diet.
No we do not have the Physicians here that know enough about it-but we do have
Infectious disease Dr that treat AIDS, Hepatitis C and that is who I went to years ago for help.
Our malady changes from patient to patient. What may help one person may not help another.
Diet, Vitamins and taking care of yourself plays a big role in getting over any
disease. BE YOUR OWN ADVOCATE!!!!!!
Carole
Javier- SOOOOO- Does this mean we are to meet you at the DAIRY QUEEN???
Carole:)
Bon Soir, Javier. Comment t’alles vous? Ju suis not ok and ju suis do not follow a special diet and think that it will help or cure me. Nor do most patients. We are just as desperate as you likely are to try anything. What if I were to tell you that the supplement acetyl L-carnitine seems to increase my energy levels? Would you consider trying it? Or standing on your head to drain your lymph system of all that is toxic? We are ready for real research that is respected and accepted by peer review and published in medical journals and shared with other researchers and physicians. What we need in the US is more funding and better research planning. And education of our doctors and students. Marcella.
Marcie– Everyone may be interested in this research data from years ago. I have this from an article by AP in our Atlanta newspaper . CDC director apologizes for misspending funds for Chronic Fatigue.
The head of the Centers for Disease Control and Prevention apologized for Wednesday to people with CFIDS , saying the agency was wrong to divert MILLIONS of Federal Dollars earmarked to study the mysterious disease.
CDC Director Jeff Koplan promised a “reinvigorated effort” to study Chronic Fatigue which leaves some people bed bound and so drained of energy they cannot do daily tasks.
Earlier this year the CDC showed $22.7 million from Congress for chronic
fatigue syndrome.
At least $8.8 million was spent on other programs and $4.1 million could not be accounted for.
I have the complete article and can forward to Cort to publish the whole article if anyone wants to see it.
This is appalling.
Also the reason Aids and other serious health issues were funded and kept being funded is Celebrities were dying from Aids and also had the backing of big stars and money makers to fund their research.
However-as you can see from this article -we had the funding-
Just not the accountability!!!
They even say in the article that the CDC’s action reinforced the perception that their illness is a mental problem, and excuse for laziness
or even a joke.
This director was not fired or charged with anything as far as I know!!
Cort if you want a copy of the entire article I have it.
Carole
Dear Carole,
You must be a bit newer at this than me or Cort. I do remember when CDC misappropriated funds to some, I think, vaccination maybe measles campaign when the health departments may have been running low. That’s about when I got sick and started learning. 1994. BSN. Medically retired. And tireless emailer on my own to people in high places trying to make a singular difference and hope that in some way I have. We are now part of the Harvard Nurses Study. Dr. Unger emailed me the plan to educate students and current practitioners which is about ready to be started via Medscape and I can’t remember…. But I do remember a great CFS video contest where we voted on the winner and then her tape was to have been distributed to every TV station in the US. Not quite but it could be done again and more assuredly this time. And, my favorite, billboards!!! And I, too, have had good luck with “working with via copies of research articles from Cort’s site, etc” and getting MD’s to work with me on same research protocol such as Famvir and Valtrex and Celebrex. None of those meds have squat for dangerous side effects so there is no harm done. I love my acetyl L carnitine, though. Likely one of best placebos around or maybe it even works. My diet includes coffee, beer, chocolate, ice cream, and some things that are quite healthy for me even. a lowgrade fever I’d had for 20 …..ing years suddenly went away about a year ago. Still same fatigue just not so miserable with it. Dental Hygienist. Atlanta? A HOME GIRL!!!! slosouljourn@live.com
Hi Marcie–I did say the article was from years ago.
A lot of people need to know we did have the federal funding
at one time. However it was wasted on other research.
A lot did not know.
I am very interested in the Dr. from Stanford , now at University of Alabama, that is doing research
Health to you-
Carole
What is occurring to me is how truly thorough both the IOM and P2P committees were but only as regarded their very specifically assigned goals which were made public, I think. Thing is, nowhere in there was there a request for evaluation of current funding. But they evaluated the hell out of the symptoms, past names of SEID and definitions historically, past research methodology and epidemiology were fairly well blasted out of the water. However, no predetermined goals regarding the status of current and past research monies and from whence they came, and consequently not a mention of money. So, since they weren’t specifically requested, then, duhh, there is no justification to do so. Much less mention individual funding agencies and discuss allocation of funds. I do think that CFS/CFIDS/ME/SEID research is about to begin in earnest with recommendations but it is now time for the NIH and DHHS who wanted the P2P and IOM in the first place to address this most poignantly desperate of issue about more money and coordination being needed to bring all these recommendations to fruition. Dr. Unger said that she’s about got the doctor’s and student’s upcoming continuing ed and curricula about CFS/SEID up and running but I’m accustomed to what that means to the bureaucracy. We need a PSA video. We need a PSA video. We need a Public Service Announcement that tells professionals and laypersons that SEID/CFS can now be diagnosed, the one million Americans, and then need to have a National SEID/CFS Org in place if only a first page (she who knows absolutely nothing about computers and is too old to care says btw). OK. One step at a time. email Drs. Fauci and Collins at NIH and ask when is the money honey pot going to arrive. That’s what I’ll do. Yea! Laughter to y’all. marcie myers
Marcie- I wish I could do more as I was also a Court child advocate years ago and specialized in speaking to the court and groups on child abuse and neglect.
I however have been in animal rescue, training
and rehab for many years. Started when my Dad raised and trained German Shepherds
years ago. I was about 11 and thought he was not getting good results as he was too harsh and rough with the dogs. I love doing it and it
was turned over to me then. I have been doing that ever since.
It is probably the most worthwhile thing I have ever done. Feeds my soul and my heart. These are animals that have been severely abused and neglected.
That said-I don’t have enough time to devote with my energy level going up and down.
I would suggest one thing that I have always
said-
If you are writing or saying something-Don’t make it complicated as some of the posts and blogs do even on this website. Make it
Simple and people will read it and remember it!!
I think this is one of the best sites I have read on new treatments and medicines.
Cort is to be commended for what he does.
He does it well.
I will e-mail you with anything that I think may help.
Thank you for all your posts and help.
( I call the Media and write the Media here all the time) It does help!!!!
FROM OUT OF SPACE!!!:)
Carole
Chris, I’m sorry that you invested so much time, energy & money only to be let down.
But I totally understand your willingness as I have done the same thing with another doc. I had consulted with a naturopath/microbiologist over a 2 year period, felt on average approx 70% better while on his protocol but returned to a typical CFS/Fibro state after going off. The only thing is that I never really knew what was in his liquid concoctions that he made for me (yes dangerous, but desperate), and my visits were solely over the phone. Not including all the supplements that I took daily that literally started with 100 per day. After spending $15k, I could no longer afford to keep up with this protocol that he claimed most people would be better and come off of in 6 months time. When I inquired about the time line I got a “well your sicker than most” reply. It was an experience that I personally had to take due to my proactive personality and my desire to fight this illness vs accepting it and it’s limitations. That was in 2007 before I was able to find many resources that offered more than I had already known. I had always wondered about Cheney’s approach and if I should have went with him instead. Thanks for sharing your experience with us.
Why did Cheney stop using GcMaf?
Cheney has not stopped using GcMAF, but he did find issues with some patients when they continued on GcMAF to the point that their Nagalase levels dropped to low causing them to become worse than when they started. He switched to the suppositories which cost around $800 for a month’s supply. You need to get your Nagalase levels tested which is not expensive but takes about 6-8 weeks between the time you get your blood drawn and you get the results. Also, it has not cured anyone.
I had my Nagalase tested and my levels were high so I called to see if he was still doing GcMaf but the office told me no, that he no longer utilizes that treatment. Interesting about the suppositories – hadn’t heard that was an option. There have been CFS patients that have improved on GcMaf, correct? Not cure but improved?
For some reason I have tried for one hour to post this in black ink and I can not.
I know that Minx was real upset with me for posting in blue one time on this forum.
I am sorry but I am going to have to post this as it is in blue …because of the energy
I have now spent trying to make my post in black for those of you sensitive to
color …I am very fatigued mentally and physically from posting…today
Dear Chris…
I want to thank you for telling us what you went through , what you spent and
the results.
my husband and I have had M.E. and also fibro and multiple chemical sensitivity illness
and neuropathy for decades.
I have found some understanding and peace from those of you that have posted on this forum
and through support groups over a period of 20 some years…because we knew we did not have
the finances to spend thousands of dollars and travel to the few specialist for any help for us.
So , I watch my sugar, watch the bread, take some regular vitamins, and I realize that there may not be a cure in my lifetime for the illness. We think it is a virus that hides in the cells..
We do have an internist who does believe in it and sees us , all he can do is treat symptoms
and offer to prescribe a medicine..which we do not take lyrica or any of the other meds they suggest..we all know what they suggest…
I did visit an infectious disease doctor at UAB…in the early stages
for a second opinion…one visit ….he said since the internist
said I had m.e. he would go along with that diagnosis..
My young internist was the one who diagnosed myself and my husband
and it was a miracle because there was hardly anyone in an internist
practice that believed in M.E./cfs/cfids..
A rheumatologist literally laughed at me that I went to …
that was a one time visit also..
We did have one rheum in the large city an hour away who did treat and diagnose
Fibromyalgia and M.E. in the 90’s…but there was nothing offered but antideppresants
and not much else…so we did not become patients there…we did not want to
on medications…
The GI issues resolved themselves..after 15 years or longer
We went through so much in the early years of the disease
acid reflux, gut bacteria, anxiety attacks, insomnia, headaches, vision disturbances,
fatigue, pain all over 24 hours a day…noise sensitivity, low blood pressure,
chest wall pain,ear ringing,
This Myalgic encephalomyelitis /cfs/cfids was overwhelming …and no one to ask
and no answers….and nothing that helped…
At least today it is recognized more so in the medical field..
in the early 90’s it was not…when we first got sick..
Aphasia is one at present and has always been…a problem…
and also shortness of breath.
I just do not tell the internist when I got a few times a year
because they have to run an EKG and it never shows anything
causing shortness of breath or the chest wall pain.
Nor did the stress test or heart test..
It cost money and time and travel so after many years
I just do not ask for any tests at all..anymore..
just about all the symptoms you have read about
we had them..and some we still have daily …
we have accepted that we have the illness, we have moved past the anger
and depression that comes in the early years …
I think that really helps because it keeps our bodies from being on high alert
all the time..and tensing and more stress..to just adjust and do what we can
when we can and enjoy the better moments..they are few but there are some
at times…
some unexpected joyful moment…looking at nature, flowers or
birds or animals…or the huge white clouds against a bright blue sky…
watching a dragonfly or a butterfly…photography is what I enjoy
at home…
I bought one book years ago and that has been what I have read and it explained M.E.
the name of the book is Running on Empty by Katrina Berne, PH.D
Have you heard that it is a virus within the cells of our bodies?
What can you tell me you have learned of how we acquired it?
Does the immune system through stress or an upper respiratory illness
become vunerable and then this particular virus enters our body
to wreak havoc on us for a lifetime?
We both were exposed to toxins…he had farm pesticides on his skin for years
at work…I was exposed to bug spray in an office where I worked
and we were around a person in their early undiagnosed stage of M.E.
a few times…
Your thoughts?
Sheri
Hi Sheri,
I understand the frustration and all of the strange things that you have had to endure over the years. I have gone through many myself. I have worked with some of the best ME/CFS doctors in the country beside Cheney, Dr Nancy Klimas, Dr Irma Rey and Jacob Teitelbaum. Noone has yet to cure me. I have also read lots of books on other illness and gone through many websites where desperate people try desperate measures to fix themselves. I think ME/CFS affects everyone differently. Many doctors believe that the immune system is weak which allows latent viruses to proliferate in our bodies. I agree with that sentiment based on my experiences, but overtime most people can fight off the viruses, but are still left with ME/CFS. I would recommend following a diet like the PH Miracle for 3 months, take activated charcoal, eat garlic and good probiotics and see how you feel. The doctors would put you on Famvir (so if you have proof of an active viral infection, that could also be helpful.), but I would try to continue avoiding the medications.
Chris
thank you so much …for the advice
and sharing with me.
Sheri
Chris- There is no CURE. Just like with AIDS-there is only treatment!!!!
But sometimes that is all we need .
My advice is live as healthy as you can. The Probiotic and Rest and CPAP
have worked wonders for me and the diet.
Thank you for your efforts in writing about Cheney.
I would not see him again no matter what he offered.
You are kinder than I with your assessment.
I saw him for a longer period of time.
Carole
Sheri- I am not sure it is recognized more now than in the 1990. I became sick in 1987 with Mono/CMV/EBV/ then Pesticided poisening.
I first went to my GP as I had Boil in my arm pits and in groin area and a low grade fever. I did have Mono. But it would not go away. All glands were swollen.
He sent me to an Infectious disease Dr. Dr. Richard DuBoise that ran at least 300 blood tests on me. He was at the forefront on the Aids research.
He started me on Immune Globulin shots, B-12 inj and some type of antinflmmatory. Don’t remember what. In 3-4 weeks I started getting better.
He later went strictly with Aids Patients as it was a big issue then.
However, again he knew what to look for. An Infectious Disease Dr. will not
discount your symptoms as some of the GP do.
I am thinking of still seeing one here. Everyone then sure took mine seriously!!
I was out of work maybe 4 mo.
I became worse when they quit mfg my Immune Globulin and went to Generic.
plus I am older. My insurance covered everything and his fees were low.
Wish I had him now. Even though I am doing alot better.
Best Health
Carole
you know I thought about what you said…and you may be right that not as many internists or rhem..doctors believe today in cfs , cfids or fibromyalgia or myalgic encep..what names anyone wants to call the illnesses..
We did have a young internist in the early 90s diagnose us in South east alabama and also there is and was a wonderful young rheu..
can not spell today…and the two of them in the same town and not in the same practice was fortunate for my husband and I..to be their patients
I also went to UAB to a young infectious disease doctor as you say they will not discount you usually…as the internist and others would..
That is all we spent…and all the travel we could do for ourselves..
None of the medications worked for us and they made us worse some of them..
I do think since I am much older now I really do not give a rip what they think.
I hope you are smiling…when we get older we have put up with so much from family, co workers, and doctors and the loss of friends
we just really try to overlook the slights and the disbelief when we go see a doctor once a year..
We just stop talking to anyone about the illness..and try to find what little quality of life we can ..hour to hour…
thanks for your comment…
Sheri
I think having someone like Cheney associated with our disease is part of our problem. People read his “theories” and how can they not think our disease is a bunch of “baloney” (insert your own word). Although one “means well” that does not make him a good doctor. As a practicing veterinarian I saw many other doctors that all of us in the area wanted to see “retire” even if they were very young because it gave us all a bad reputation. Yet all the other CFS/ME practitioners continue to allow him to be on boards etc.,. To me this is an outrage! What he practices is clearly malpractice and if he were in England like Dr. MyHill!
The problem with our disease/condition is that noone knows what is the real issue. Many people have a variety of theories on what is the underlying cause, but all of them are still theories and regardless of all of the theories, even if they do figure out the cause(s), that does not mean anybody knows how to fix it. I have scoured the web looking at doctor’s and solutions and I think some of these solutions probably can help some people. I think Cheney’s solution which I shared here as well as the guidelines laid out in the prior 2 articles is not going to be harmful and may be helpful to some people. He has experimented on people because most of us are desperate for a solution. I have said for the last 12 years, that I am a science experiment as I have tried a variety of different things in hope that something will work. What I have learned is what things can help me feel better and fix some of the issues I was having and what things make it worse.
Greg -Totally agree with you. I have been writing about Cheney for a couple of years.
The really sad thing is I had no anxiety and I was prescribed 3 different drugs for anxiety. Also muscle pain drug . I did not have it either. Klonopen, Xanax,
Neuronten, Valium. Everyone gets the same treatment and we are NOT all sick with the same malady. Also wanted me on heavy dose of magnesium inj. I did try that and could barely walk. He wanted me on 4 inj a day sub Q for my heart. My heart rate in gen was not fast.
I also found out that some of the things he rec came from a Pyramid Co. The lady told me he was a top member in it when I called. This means he makes a commission on what you buy as he said to be sure and give them his name.
I never took any of the drugs he rec other than the Magnesium and the B-12
I had compounded at a pharmacy.
I am sorry everyone that wants to believe in him.
I knew enough to get a 2nd and third opinion.
DO it-if you are seeing him.
Tried to sell me a water purification machine. Then when patients in Calif complained they all got sick on them, he said it was the fluoride leaking through the seal and they would replace the seal.
Carole
Greg- This is a compliment for you.:)
I recently had an article published in the paper here and online in my Vet
Specialist paper stating” I WISH I COULD FIND AN MD AS THOROUGH AS MY VET SPECIALIST” .
My Vet has it up in her reception room.
As I said before I am a State licensed Animal Rescuer and get great care.
Carole
Ha, just yesterday my friend with a sick cat said she sure wished she could find an MD as caring and thorough as her vet!
I have a 20 year old cat. She has recovered from Diabetes, Hypothyroid, and now has chronic Pancreatitis. Is doing wonderful
due to my Vet specialist who has become my best friend!!!
She said I was her best patient- I came in and gave them the diagnosis and sent all their kids to college.
I am not an easy patient with my animals-My Vet is Wonderful
beyond words.
Carole
Carole,
Before I got sick I always thought it was strange that I constantly got comments from animal owners that stated ” they wished their doctor cared as much about them as I cared about their animals”. Little did I know how true it was, until I got sick. My wife swears I get the royal treatment because I’m a man, and a doctor- mostly I would throttle them if I were healthy!
Except for my first doc, I have to guide all my care myself- eg. cardio workup to find a dilated cardiomyopathy, etc….
Greg, the cardiologist I had ordered a stress test which showed the PVC’s and my ejection fraction was only 45. Said my heartbeat wasn’t normal but wasn’t serious and sent me home. It was months later with worsening symptoms that I saw the nurse practitioner who monitored me and told me PVC’s like mine can damage the heart. Don’t you just wonder about some of these doctors?
Greg- I have used this particular specialist since she was an intern in another Surgical practice. 20 years ago.
Our policy since I rescue Dobermans and Rotties is we never do drop offs- for anything as some people they like, and some they don’t . We wait with them in between procedures.
They love the Vets -not all the techs.
My Specialist now has her own practice . I trust her, but she also
listens to me as I know my dogs and I know when something is off. I keep a log of symptoms.
You want a Dr. that zeros in on you and your Pet only when you are in to see them.
I just want the same thing from my PHYSICIAN.
Thanks for your time helping animals!!!!!
Carole
Greg- One thing I find interesting is.
Rheumatologist that sees prof people I know- said that the majority of his patients are people in the medical, Dental and Vet fields . Plus other health fields. Anesthesiologists. There is always some drift off from using these drugs day after day in your work.
He said the chemicals we come in contact with – myself Mercury as we did not wear gloves and masks in all offices.I am a Reg Dental Hygienist.
Wondering if any of the Dr have picked up on that. Many live vaccines were used awhile back with Parvo and others. With Vets.
Also with our children who were given live vaccines which shed.
I have 2 sons with ADHD. They were both allergic and were put in the hospital with
reactions (severe )after Smallpox vaccine. My Pediatrician said they both were allergic to the Bovine in the vaccine. This was years ago.
He sees alot of Lupus, ME, CFIDS pts. However they are all on meds..
on a continual basis-which I do not want to do.
Just thought I would throw this out there.
Carole
Do you eat vegan because you have problems digesting proteins?
Did you try taking lots of gelatine? the proteins in gelatin are very bioavailable
Hi Toove,
I like my meats. I have not noticed a problem with eating meat and being a former personal trainer, I ate good quality protein (grass fed and organic) as well as alot of whey protein powder. However, having read the China Study and witnessing the startling recoveries of several people by going on vegan/alkaline diet, I decided it was worth trying and in 1 month, I noticed the first positive changes in 2 years. Since then, I have also stopped most all but 1 of the prescription drugs I have been place on (which could also have been having a negative effect). My plan for July is to do a 7 day liquid diet followed by an alkaline diet for the rest of the month. In August, I am going on vacation with my family, so my plan is to try be eat healthy, but eat occasional meats and normal restaurant fare to see what if any affect there is.
Chris- The best thing you can do for your body is to go off all Meat . That includes Poultry. It actually feeds the bacteria in your Gut and keeps it activated.
It really is not a big deal.
We wear seat belts to save our lives.
Why not try it gradually and see.? It definitely is better for your Heart.
The Protein drink Smoothie I drink is what I have for energy during the day.
I have a small meal at night.
Daytime is my busy time-The Love and Peas Powder just does it for me.
Can’t tell you how many people love it.
If you crave sweets-you need to eat more often.
If you crave carbs-you are not getting enough Protein.
FACT.
Thank you for all your interest and can’t believe you had the energy to do all the research.
Carole
Dear Chris,
Thank you a very demanding and detailed on your part article…. what an effort that in itself must have taken! Wonder if any of his theories will pan out? That’s an extraordinary amount of money you shelled out. Sorry that it didn’t lead to more wellness for you. marcie
Thanks Marcie,
Even though his recommendations did not help me, I am hoping that the information I share has value to others. While it was alot of money, I was desperate and my visit to 14 different doctors including CFS specialists has pretty much left me looking for whatever options I could fine. Cheney had experimented already with several things I was interested in trying (Stem cells, GcMAF), so it was a gamble. However, if I followed all the recommendations and the drugs other doctors wanted to put me on, even when I did not have the condition or symptoms, that would have been a much worse gamble.
Chris- The Stem cell experiment with Cheney did not work on anyone I talked to and he dropped it.
He jumps from one thing to another.
Does no one realize -He is desperate, and has serious issues?
His Secy who I loved told me-“If he starts wandering onto something else when you are in talking to him. Wave to me and I will come in and
remind him”. I am not paying someone $750.00 an hour to tell me about his
family-then in the next sentence tell me I am in Heart Failure!!!!!
Carole
I personally know two people who have fully recovered on Cheney’s protocol- one male and one female. They were both housebound and unable to leave the couch/ bed for years. They are now working full-time and leading active, vibrant lives.
Please ask them to share their stories and what they did.
Kris— Same thing happened to me years ago in remission-not from Cheney.
But Infectious Disease Dr.
Carole
And just another cfs rip-off case.
Javier- OK JAVIER-WE WILL MEET AT MCDONALD’S INSTEAD OF
THE DAIRY QUEEN!!!!:)
HAPPY NOW???
Carole
Gotta say generally……all the practitioners who start charging like wounded bulls for consults should have to present some proof of success. I realise this is fraught with all sorts of pitfalls….sigh!
The Internet may be able to put some degree of pressure on any charlatans. Keep the posts coming everyone.
I though this discussion of the Cheyney protocol was quite balanced.In many cases the people we look to for help are MDs WHO JUST HAVE AN ALTERNATIVE VIEW. They do not have all the answers. They are not that special mostly. But they think they are special and reap rewards commensurate with costs calculated on ‘their own opinion of themselves multiplied by the desperation of their patients’. That comes to a large number.
How they sleep at night is beyond my grasp!
We have seen many an expensive practitioner who did more harm than good…..at a physical and financial cost. It is a pity we can not pay the practitioners based on a formula of percentage of how much you improve multiplied by 10! If you feel 20% better you pay $200.
Sorry….the alarm clock just woke me up!
Or if you feel 20% worse, they pay you 200.00. 🙂
Your alarm obviously has not gone off yet! Time to wake up now!
Les Simpson’s work on red blood cell changes in ME/CFS shows that the red blood cell population becomes dominated by shapes which cannot get through the capillaries. The function of the red blood cells is to take oxygen to the cells and remove metabolites. He would rightly insist that no organ, no cell, can perform normally if deprived of oxygen and containing a build-up of waste products. I believe that this is what is meant by oxidative stress (not enough oxygen) and nitrosative stress (too much buildup of waste products). It seems very logical to me that if, as a result of this, muscle cells, brain cells, and endocrine cells are unable to perform their functions (and can mitochondria perform their functions under these circumstances if oxygen-deprived?), we have an explanation for the wide-ranging and variable symptoms of ME/CFS. The other thing, of course, is rest, conceived of as a treatment. 6 g of fish oil, or 4 g of genuine EPO can help with the blood flow problems. Rest can help with everything else. The IOM say that this disease is one in which any form of exertion, physical, cognitive or emotional ‘may have adverse effects in many organ systems in the body’. Conservation of exertion becomes the core of effective treatment. If seeing a doctor doesn’t help, don’t expend the exertion involved in getting to a doctor. Spend an extra day in bed, instead. We need to learn to support our heads all the time, why carry a ten-pound bowling ball around all the time, put it down. And adopt completely relaxed positions as often and for as long as possible. Taking supplements (fish oil, EPO, probiotics, CQ10) is expensive but not nearly as expensive as prescribed medicines. Resting is cheaper than continuing to exert and becoming completely incapacitated. Going around in an electric wheelchair and feeling great some of the time is better than determinedly walking and ending up in a heap. It fills me with despair to read all these accounts of energy, time, money, hope, being expended without any improvement in the illness. Studying how to save exertion in our everyday activities, and determinedly reorganising our lives and activities with this as the focus does hold out some genuine hope, and doesn’t cost a fortune. I know telling sick people to stop going to the doctor is rank heresy – but once you’ve made sure they’ve checked out other possibly treatable diagnoses, what is the point? Just to have fights with doctors who don’t believe you – how much worse does that make you? Or spend hundreds and thousands, as well as time and energy, on doctors who do believe you, and are not ashamed to keep on charging even if you aren’t getting any better? How much worse does that make you? Ramsay told us to rest, and he continues to be right. Nancyindespair!!!
Also Nancy getting much, much better, after overexertion (trying to use the London Underground to get to the 2014 Invest in ME Conference!) that brought on a year’s relapse, sorted by a year of serious rest…feeling great for a few weeks now, but still taking resting very seriously.
Nancy – great Post. Resting is my medicine and pacing is my medicine. Diet is my medicine.
Love Ramsey!!!!
One thing I have learned -I do NOThave a laptop. I do not want to be in contact with people all the time on text, e-mail or phone. Particularly Negative people. When I finish with my computer in my office I close it and that is it for the day. I am not carrying it to bed with me!!!!!
YOU ARE RIGHT ON!!!!!!
THANK YOU-
Carole
Carole, thanks for your kind words…I need to do a bit of turning off the internet stuff, too!
Chris, I am very sorry you did not get any results with Dr. Cheney. I do want to tell folks I have been his patient for eight years. I was very ill for many, many years…and he has got me functioning. I was helped a lot by the CSF’s..and the VIP also helps me quite a bit. I am not sure about the membrane therapy…but the earlier CSF’s particularly the heart got me going again. He has a brand new machine he has been using for the echos for the past year..and its state of the art. He did raise his prices but the new echo machine cost 250,000 $. I also am helped a lot by the alkaline water, bentonite clay..which I told him about by the way…and he thinks we were impacted by a virus that screws up our ability to use oxygen normally. I have been to a couple other CFS physicians..and spent gobs of money on other protocols.., but I have been helped immensely by the b12, CSF’s which he has gone back to the individual ones..and the VIP. One of my friends with CFS is seeing him and is also improving. It is terribly expensive..but I needed a wheelchair to get there in the beginning..and I started walking and being upright soon after I saw him. I do think my heart was not working as well as it should have due to the low energy state. I am certainly open though to hearing what has helped others. I just think Dr. Cheney has some good ideas..and although expensive, he has a great mind, and also really has seen many of the most ill patients. He is very open to still figuring out what is causing this illness..and I wouldn’t knock him, just his prices perhaps.
No one is knocking Cheney just for his prices.
He jumps from one treatment to another.
Over medicates people that don’t need it and to me that covers up the real problems.
Glad you have had improvement.
Just wait for the other shoe to drop!!!!!
Carole
Hi Carole,
I am sorry your experience with Cheney was bad. All doctors suffer from a blindness to what they treat and how they view a person in medical terms. Sometimes there insight is useful, sometimes it can kill you. I think you have come to the right conclusion that you have to take your treatment into you own hands. The medical system is not designed to take care of complex illness and everything is run by the drug companies anyway.
N
Hi Lisa,
I am glad his protocols are helping you. I hope my article was a fair appraisal. I was not knocking his methods. More so, I am sharing his recommendations in hope that it does help some people. The CSFs and VIP though are going to be pretty difficult to get without going through Cheney and then I would probably want some guidance. I do agree that the costs are too much. There was a discussion above that doctors should pay you if you get worse, the flip side of the discussion is what would you pay to be healthy. However, Cheney is a smart man, but he too suffers from looking at things through his field of vision which may be helpful for some but not others.
Chris,
I really liked your article. I was trying to reply to you sooner, but had to swtich to Chrome from internet explorer to do so. I wanted to tell you the new study with Dr. Navieaux is not the same study as the one you mentioned where they looked at the junk DNA. This is a different study being done by the University of California San Diego..and should be a much better study. Its looking at markers in our metabolome and compares them to healthy controls. The Next generation sequencing has never been even run I after a year and a half of blood samples being taken. I am still seeing Dr. Cheney. I do feel discouraged by the prices, but I do respond to some of the protocol. I just have been very careful to not do the real expensive things like GcMAF, or the stem cells. I do a fairly low dose of the VIP as well. If you want to ask me any questions..my e-mail is lisaenya25@sbcglobal.net. I did think you did a good job of presenting his ideas.
Lisa Schicht
I do want to say this about cost..it does cost a lot..but a lot of chronic illnesses like MS have very expensive drugs..that if you are on medicare are not covered that well because you hit the doughnut hole. Medical care is just way too expensive for lots of people..and the real issue here is the lack of research being done to determine what is wrong with us. I think many of the CFS doctors are seeing one part of the elephant..and since the research hasn’t figured it out yet..we do end up trying a lot of unknown treatments. What I really think is needed is to continue to try to get into research studies, and write for funding so eventually we will have an established understanding of this illness.
what a load of garbage…. these drs are literally making $xxx xxx xxx dollars a year and laughing at you when you leave their clinic. Steps to fleece sick people… 1) empathise with patient 2) come up with big words and a complex rationale for a treatment protocol 3) charge tons of money 4) sit back while tona of misguided desperatley ill cfs patience who do not understand the process of science and distrust it or who think doing something is always better than nothing….. make you very rich
Luke- AGREE-AGREE-AGREE!!!!!
He basically sent me home to die. Seriously
No one has even mentioned how much he charges per WORD to do an E-mail. Even if it is for a test result.
The Alternative Dr. here and the one in Belgium know he is riding on their coat
tails.
Chris- I hate to say this-but why are you not upset with the circumstances?
Not just the money-but that he really had no answers that worked??
Sorry- Just venting.!!!!
Carole
Hi Carole,
I have worked with lots of CFS doctors and other doctors and nothing has worked so far. The best progress I have made has been by choosing those things from the naturopath/holistic community that I think might make a difference and there are a lot of quacks and good doctors in that group that are also trying to fleece you or at least make a buck. Its $500 and hour to see the Andrew Weil trained doctor here in Miami.
Why am I not more upset with Cheney?
1) there were specific treatments which I was interested in learning more information about that he had tried with others,
2) many of the lifestyles arguments and treatment choices made sense from a holistic point of view
3) He has worked with many very respected physicians and researchers in and out of the ME/CFS community trying to find beneficial treatments.
4) He answered all of my email questions without charging me extra. True, he did charge me his $13 a minute rate to discuss my Nagalase test results, but I told him to be concise and the whole conversation took 11 minutes and that was more because I was asking questions. Still, I was not happy paying that money.
5) I could tell right away that he was a researcher. pompous, and interested in educating people on his views (whether that was to boost his own profits or to educate his patients, I can’t say). He is a very smart man and does not handle people who can’t communicate on his level well.
Carole,
I understand that he treated you poorly and that you have a personal vendetta against Dr. Cheney. I get it, I hold grudges when corporations or people screw me over. I believe we should all treat each other well and altruistically, but the world doesn’t work that way. So, I think my evaluation was fair. He costs too much, but some of his ideas may benefit some people (and look I have shared them with everyone who has read this and they can choose to use them or not without paying his exorbitant fees).
One last question, suppose Cheney comes upon some protocol that only he offers and that it costs $20000 to implement it, but there is a 90% (documented, verified, double blind study confirmed) cure rate, would you go back to him? Just curious.
I feel like this is an issue that we don’t discuss enough. Even the most well-meaning doctors might not have real and effective treatment options to offer patients. Until the medical community can clearly define what ME/CFS is, then nobody is able to say exactly what they are trying to treat.
What it means for patients is that we are vulnerable, because we are so sick and we are willing and even eager to try almost anything a doctor might recommend to us; but at what point do we say, No? At what point do we sit down with our doctors and agree that until the pathology of ME/CFS is understood, better treatment options might simply be unavailable.
Thank you, Chris for such an interesting article. I have no problem with Cheney believing that ME/CFS is a complex disease and possibly requires unusual treatments. I am offended by too many other inconsistencies, (expensive therapies, outrageous office fees, drug therapies in which he might receive a commission). The thing that might offend me the most about Cheney is the hours-long office visits — anyone with a totally debilitating disease cannot endure such nonsense — treat the patient and let them go home and lie down. As was stated in an earlier comment, no doctor would treat an MS or AIDS patient that way — why should ME/CFS patients have to contend with a different standard?
Hi Liz,
We have to be responsible for our own care. The problem in many cases is when this illness is in an acute phase, we are just trying to survive and we are enduing a multitude of bizarre and hard to define symptoms. I was dealing with ME/CFS and its exercise induced limitations for 15 years before, it tried to kill me. I had worked with multiple respected ME/CFS doctors with out much real progress during this time and I was lucky enough to have a personal care physician who would work with me as far as prescribing drugs that I could try to see if they helped. The problem with the ME/CFS doctors is that they are in such high demand that you only get to see them once every 6 months to a year. While Cheney was expensive, to have a doctor who will spend the time with you and will answer email questions( no extra fees) within 1-2 days was still a luxury. I wish Cheney did not charge the ridiculous rate that he does, but there are enough rich desperate people to allow him to practice medicine, but for him more importantly to do research to try and solve ME/CFS. I think most doctors are not patient centric as opposed to the veterinarians described above and neither is Cheney. With regard to expensive treatment, MS and AIDS have specific diagnosis and have very expensive drugs that can be prescribed. If I would have wanted to try Rituximab, it would have cost me $40000 as it is not covered by insurance for ME/CFS but I did have a doctor who would do it. I, also, found a doctor who would do STEM cell treatments for $75000.
I think the problem is the whole medical system and not just isolated to ME/CFS. We have more of an issue, due to the fact that there are no treatments approved – so we have to keep looking outside the status quo which I am now convinced is a much safer place to be (blunt force trauma withstanding).
Good point Chris on how many treatments are not available to ME/CFS and FM patients because the work has not been done. It all goes back to the money. No standardized treatment protocols are present for ME/CFS – at least none that a regular MD is going to have access to.
Chris- Cheney didn’t charge you to answer an e-mail? He charged me by the words and whether it was a long or short word.Of course it may have been before you started.
The problem is everybody keeps making excuses for Cheney. This is part of our problem in the US.
If you are impressed just because he gave you the time-You are paying a big price for it.
If you are not better after a year -he is not helping !!!!
Sounds like you are having a problem accepting that!
I can tell in less than a month if something is working or not.
You know what your answer is !
Try Lapp. Just spoke with someone that used to work for him and says
he leaves no stone unturned to help his patients.
I am thinking about it myself.
However, I am doing better right now on my own and my CONVENTIONAL DR.
Thanks for all your work.
Carole
were lucky to have ME/CFS relative to other conditions?!
From Cheney’s perspective ME/CFS is an adaptation that prevents us from experiencing a different condition that would kill us quicker than CFS. On the flip side of his comment, we get to suffer longer.
Let’s just be honest about this – doctors like Cheney and Lapp are kind of like the docs that celebrities go to because they all have their various ‘light bulb ideas’ that constantly change and they all are out for the money. “Gurus”? I am on Medicaid, so of course they would not give me the time of day, anyhow.
As for sleep studies, people with CFIDS or Fibromyalgia are poor candidates for it. I went to a sleep clinic and was told that I slept through the night despite distinctly remembering that I woke up to look at the watch I had on, and despite the fact that I can wake up and go back to sleep – and continue the dream that I was having just to see how it ends! Going to sleep and having quality sleep are two different things.
In England the Royal Brampton hospital has a sleep clinic and provides Capp machines free on the NHS. And provides annual follow up. zip ask your GP for a referal.
Hello Chris,
I truly appreciate your in-depth and well researched article; many thanks for all your work!
One thing I’ve been trying, and am having some decent results with, is the addition of non-fractionated cod liver oil (not regular CLO), coupled with liquid vitamin K2, as MK4.
Though, since what we all have is pretty debilitating, I want to be clear that I’m not offering medical advice here, just a couple of ideas to share for research purposes :>)
Now, from my understanding, most CLO on the market has been altered to remove its strong, fishy aroma and taste. Also, naturally occurring vitamin A and vitamin D may have been removed as part of processing, and then put back in at the end of manufacturing to create a neat, 10:1 ratio. The same goes for EPA and DHA.
Though, you can tell a non-fractionated CLO, because the amounts of EPA, DHA, as well as vitamin A and D, will all be expressed as ‘ranges,’ as opposed to as an exact number of milligrams, or IU’s. Also, the best place to start researching CLO is to go to the Weston A. Price site, where they also keep an updated list of brands.
In addition to unadulterated CLO, I use Thorne’s Vitamin K2 Liquid, which is pure MK4, in MCT oil. I’ve found that the combination of naturally occurring vitamin A and D, coupled with MK4, has helped my immunity be less reactive, and has also offered me more consistent energy. Additionally, my teeth and gums are doing much better.
As far as dosing goes, for me that was trial and error; though, I am very conservative when it comes to vitamin D, because I had kidney stones when I was on 4,000 IU/day, even though my blood tests said I was well within the normal range.
I hope these ideas have been of interest, Chris, and best of luck with your continuing research!
Hi Dean,
Thanks for sharing.
I agree with your premise on trying to use stuff as close to nature as possible. Over the years, I have tried a variety of fish oil and krill oil supplements in very large amounts and smaller amounts without noticing much of a difference. Fish oil got a lot of play due to its potential heart benefits, but more recent studies have not been so kind. I think that the world is/has overfished its oceans and that fish oil tablets are an example of the supplement industry marketing to everyone. Also, everybody has jumped on the Vitamin D bandwagon, but more recent studies are showing issues taking too much vitamin D. I tend to rotate my supplements. I try something for awhile if it is supposed to be good for me and then stop after about 3 months and try to judge any perceived benefit. I have not tried unrefined CLO and I am not familiar with Vitamin K2, so I will take a look.
Dean great suggestions. May try the Cod liver oil and Vit K. I have not found an
Omega 3 that does not have high Cholesterol.
My Cardiologist took me off of Vit D completely and Calcium as I have some plaque in arteries.
Thanks,
Carole
Regarding the ratio of EPA to DHA, I should have said that the ratio, as it exists naturally in CLO, is generally about 1.5:1 to 1, not 10:1; though, I don’t believe there’s yet a scientific consensus as to the most beneficial ratio of EPA to DHA. As such, I prefer to purchase the least processed CLO, and simply go with what nature intended!
In my experience Cfs can be reversed, but not cured because it is genetic in origin. My diet is very important too, gluten free and sugar free, high protein. I saw Dr lapp in 1997 but couldn’t afford to go back. Guaifenesin is inexpensive and safe. Absolutely the best money I have spent. Benzodiazepines are addictive and I always figured I didn’t need addiction on top of fm Cfs.
Hi Jody,
Why do you think it is a genetic condition that cannot be reversed? Also, I have never heard of using Guaifenesin for treating anything other than congestion. How and how much are you using of it and for what? How is it helping you?
http://www.fmnetnews.com/coping-resources/consumer-alerts/product-6
When you say CFS is genetic. Do you mean we are predisposed to it because of genetics?
First time I have heard that.
Interesting.
Mine started with Mono, then CMV and EBV. Was never a sickly child or person
before that.
Was exposed to many chemicals in my work as a Dental Hygienist.
Thanks,
Carole
Dr. Cheney is involved in a new study by Dr. Naviaux at UCSD now..which Dr. Nathan and Dr. Eric Gordon also have patients in. Its suppose to take a look at the blood by spectroscope which may throw more light on what is causing chronic illnesses. It takes a look at our metabolome..which I don’t totally understand, by any means. However, this is encouraging. In defense of Dr. Cheney he doesn’t usually stick with the same treatments because he is really looking around at other options..and his thinking changes. I also want to say that I try other things..and I don’t think he totally understands the illness. Carole, I also think if you could walk two miles..you may not have the heart issues because your energy is a lot higher to start with. Dr. Cheney does not think its a genetic disease…and he thinks its caused by a virus. But we could all be different due to how our metabolome is impacted…and genetic weaknesses, and co infections. I am excited about this study..which is supposed to be published within about a year. Dr. Cheney explained to me that when we cannot utilize oxygen normally a lot of our pathways become impaired..like detoxification, and our guts..everything and we are cori cycling..so not making energy and sending glucose to d ribose to make NADPH. I don’t agree with him on everything..and I am sorry you had a bad experience. This is such a frustrating illness though. I also have an identical twin sister though who does not have CFIDS…that is another reason I don’t think its genetic.
https://www.genomeweb.com/molecular-diagnostics/chronix-team-publishes-validation-study-ngs-based-liquid-biopsy-test
Hi Lisa,
I guess I was wrong about the study you were bringing up. This seems very interesting based on the potential similarities between ME/CFS and Autism. Cort, there could be an article in this for you.
http://ucsdnews.ucsd.edu/pressrelease/single_dose_reverses_autism_like_symptoms_in_mice
(or maybe a blog from Chris on this???)
Sleeping sickness – that’s really interesting – thanks!
COULD BE HE DOES NOT STAY WITH THE SAME TREATMENT BECAUSE HE DOESN’T REMEMBER IT–OR THE ONE COMING UP!!!!!
CAN’T BELIEVE HE HAS BEEN IN PRACTICE THIS LONG AND HE HAS WHAT 5 PEOPLE THAT ARE IMPROVED?MAYBE ALL THE OTHERS DIED.
AND CHRIS IS ASKING FOR MORE INFO ON HIS TREATMENTS?
ALSO IF I COULD WALK 2 MILES WHEN I WENT TO SEE CHENEY- I COULD NOT HAVE HEART FAILURE!!!!
UNBELIEVABLE!!!!
CAROLE
Carole,
I can understand you are upset…sometimes Dr. Cheney is too blunt when he says things. What he really means is that our hearts have to work harder because energy is lower. He actually sees very little actually change to the heart like coronary heart disease, but our hearts don’t fill quite as easily since that takes more energy. However, wow two miles is great!!! I was in a wheelchair for about ten years..except for walking short distances, and I could feel my heart struggling. I think as we get stronger its less of an issue.
Lisa
Lisa- I am not upset because Cheney is blunt. He wasn’t blunt with me in fact I liked him.
I am upset because he wasn’t interested in my condition, just gave me a diagnosis that fit everyone else and kept changing the
plan after I had invested in different things.
Also he gave me a DIRE wrong diagnosis.
Didn’t Rec to do any blood tests PERIOD. didn’t want to send me results.
Or explain them. Unless I paid a hefty fee to talk to him.
The tests were paid to the Lab, but I got no info on any of this.
Just didn’t care!!!! I think what really upset me the most was
when I called about the blood tests. His answer was
“Nothing I didn’t expect”. No other explanation.
I think he is arrogant and really just treats patients as he thinks
he has them more or less a “Hostage”. No other Dr to turn to.
The sicker he can tell them they are- the more likely they are to come back to him-thinking no one else can treat them.
Carole
Hi Carole,
I am starting to get this vague feeling that you are not a big fan of Dr. Cheney’s.
🙂
Chris and Cort-
I am never a fan of a CON ARTIST.
I was a patient of Cheneys for much longer than you and know him well. He is from where I live.
I am in a support group of about 35-40 people.
Have several that have been Cheney pts.
Two from the group years ago were going to see him and could not find help with meds they were taking -too expensive. They called on him for help. Rec None.
Both committed suicide. One was 37.
When I mentioned that to him on one of my visit. There was no emotion or comment.
Hope it works out for you.
Carole
Carole,
If you knew two people who had horrible experiences w/Cheney, why in the world did you go to see him?
Hi Lisa,
Are you still a patient of Dr Cheney’s? If so, would you mind emailing me personally. I will ask Cort to forward my information.
The study you are mentioning is being done by a company called Chronix that looks at specific types of changes/errors in DNA. Cheney’s hope is that this methodology will help to provide a biomarker for ME/CFS patients which could be interesting and perhaps useful as a test to confirm ME/CFS diagnosis. However, I don’t see how its going to provide any potential treatments though.
Also, I did not have a bad experience, it was more of a costly experience where I did not get the results I was expecting.
I wrote you a reply to one of your other questions. I am not sure of your e-mail to write you, but mine is lisaenya25@sbcglobal.net I do still see Dr. Cheney.
Lisa
Ran into these forums posts concerning stem cells and other treatment by Cheney
http://www.lymeneteurope.org/forum/viewtopic.php?f=12&t=3072&sid=b4fab63bc9298f615b3335c1e5a902f3&start=20
Thanks for the info.
I’m reminded of the litle boy who dared say the Emperor was wearing no clothes. It’s time we say it. His prices are obscene and his treatments his opinions not based on anything a real researcher would call research.. I go to the Klimas Clinic which takes Medicare and where a true researcher is the heart of the clinic. There are no magic cures. The online pacing classes Bruce Campbell established helped me, along with a med and a few supplements for symptom relief. Three inexpensive supplements they put me on raised my NK cells from nonexistant to a normal number of them and increasing activity at each annual immune system testing.
What were the supplements they put you on?
Lisa Schicht
Hi,
I have been working with Nancy and Dr Rey over the last 10 years and been involved in numerous experiments with them. One that perhaps, led to autoimmune issues and muscle wasting in my feet. They mainly are recommending, Low Dose Naltrexone, Famvir, and Inosine or Isoprinosine. They, also, will recommend MB12 ,Methylfolate , Vitamin D and Ubiquinol. I had been a patient with them at U of M, but when they went to NOVA, they stopped taking insurance, so the visits went from $50 (as per insurance) to $300, now they take insurance again. Don’t get me wrong, I like Nancy and the clinic, but they’ve had blinders on for years by only looking at the immune system. In the last year, they have taken seminars on environmental medicine and are now incorporating that. Thus, they are recommending , activated charcoal, sweating. and perhaps other treatments.
Chris –
Have you started the Low dose naltrexone?
Klimas and Rey’s group are working on analyzing their data related to LDN, Famvir, and Inosine. I started LDN at 1mg and then tried to quickly ramp up, but that did not go well so I stopped for awhile and then slowly titrated up to 3mg, stayed there awhile and then slowly titrated up to 4.5mg, but I did not notice any benefit. However, I have heard lots of positive things on the internet and from Dr Rey about patients that have experienced benefits. Reducing pain seems to be one area where it is particularly effective. Some people say it helps there sleep and other say it makes it worse. If you want to try it. Start at 1mg for a week, increase by .5 mg every week up to 3mg. If you have issues with increasing, start with lower incremental doses. Stay at 3mg for a month and then you can try going up to 4.5mg. Some people do well at 3mg, others at 4.5mg and supposedly one person was doing well at 4.5mg twice a day. You should take it before bed based on the way it works.
In a previous blog on this topic, mold was mentioned. Was this ever addressed? Insofar as the mold in the house is particularly problematic, I would not expect any treatments to be helpful at all, of course.
>Some of his patients report improvement in sleep, cognition and energy. Dr. Cheney has found that patients with the biggest cognitive benefits are those with low cerebral blood flows as measured by his 3D Doppler imaging machine. Non-responders generally have had large mold exposures (as noted by Ritchie Shoemaker). One of my concerns is that the mold in my house might not allow me to derive any benefit. The question is whether my mold exposure would be considered large or not, as virtually all homes have the potential for harboring some mold, and mold spores are everywhere.
http://www.cortjohnson.org/blog/2014/08/25/cheney-chronicles-protocol-chronic-fatigue-syndrome/
Mold is a tricky one,
I paid $800 for the mold mycotoxin tests Cheney recommends from Real Time Labs and another $300 for a mold analysis of my house. The mycotoxin test said I had high levels of Tricothecenes mycotoxin related to stachybotrys mold which supposedly very hard to get out of your body. Meanwhile, my house mold test showed high levels of different molds. According to Shoemaker, VIP treatments don’t work if you have heavy exposure to molds. However, my VIP levels did increase over the course of the year. There are some molds though that do respond to certain anti-fungals. I figure through garlic and activated charcoal is as good as any other mold removal remedy. Some people are extremely sensitive to mold and notice it pretty quickly. I have not found that I have that type of sensitivity.
Chris or Lisa, do you know if there are any OTC mold tests for the home that are not as costly but fairly reliable? And is it even necessary if one lives in a dry climate? Thanks.
It may just be easier to do a mold detox without testing for it. It can’t hurt right?
I guess it depends on what you do for a mold detox, but most of the things that people use should not be dangerous. Just be careful using binding agents (activated charcoal and similar) around when you take medications.
Around $300 seems to be the standard cost/
Sheesh! Thanks Chris.
Dr. Cheney told me this year, that while its good to clear up mold, a lot of our issues are in the detox pathways. I am doing pretty well on the VIP spray, and I have mold in my system. Dr. Cheney, and my other doctor in Chicago are having me take bentonite clay to help clear out the mold toxins from my body, and help me detox them better.
Has anyone tried or been helped by Fucoidan? Just heard of it the other day from a neighbor….
If it sounds like a duck…
Just saw Avril Lavigne on GMA talking about her Lyme, crying through most of the interview. Even she was dismissed by top doctors in the LA area – some told her she had Chronic Fatigue but she got the “just get out of bed” bit too. After a couple months she realized she had to be her own advocate and found a Lyme specialist. I remember this happened with Oprah and her thyroid – not getting diagnosed for quite awhile. It amazes me that even famous celebrities who go to top docs are being misdiagnosed, dismissed or just not getting a simple blood test you’d think these docs would know to order.
Ehlers Danlos Syndrome type(s) ‘undiagnosed’ its not CFS Fibro Lyme b.s. its EDS type(s) with Sycope and/or P.O.T.S plus MCAD Mast Cell Activation Disorder some even have ‘incomplete partial’ Marfan Syndrome…EDS Breighton Scale Beighton Scale some do not have EDS they
have full Marfan Syndrome…Yes in EDS Heart transplants are required there is Heart failure involved plus some have Osteopenia Bone Dexa Spine Scans which puts one into rare EDS type(s) plus some have Dyastolic dysfunction…Cheney most likely has Ehlers Danlos Syndrome
would not be surprised at all…95% of CFS Fibro so called Lymies have ‘undiagnosed’ EDS quote by Dr Rodney Grahame Senior Professor Rheumatologist Hypermobility Unit London..Also Michael Jackson also had undiagnosed Ehlers Danlos Syndrome he was definitely
hypermobile…Some have small tiny ears some have attached ear lobes some are hypermobile others are stiff some have elasticity skin…Used to be called Rubber Man Illness…There, this did not cost $810.00 per hour it is free advice now go & get a proper diagnosis by competent Doctors
not ‘patients’.who play Doctor…There is no Cure for EDS majority are born with a Genetic mutation passed on by either or both Parents it runs in Families 50% of children will inherit this mutation it is a Connective Tissue Disorder Collagen glue deficiency…Forget about CFS/M/E/
Fibro Lymie pure b.s. its EDS
Forgot to mention MRI Supine are useless in EDS only upright sitting MRI plus MRA are advised as well to look at Veins…Spine will find Chiari, Stenosis, Scoliosis, Compressions etc etc
Barcelona now finds Fulim Disease base of Brain Barcelona Chiari Institte 45 minute operation 15,000.00 Euro day patient they freeze the neck area…
Aidan –
I just googled “Fulim Disease” doesn’t show any results. Do you have more info on this?