Ari Whitten is a Scottsdale, Arizona naturopath who runs the Energy Blueprint website. He’s done an amazing number of podcasts with alternative health practitioners. If you’re interested in alternative health, his website is a good resource. I find that Whitten asks good questions.
His May 28th interview with JE Williams, “Common Viruses That Can Trigger Chronic Fatigue (CFS)/ Myalgic Encephalomyelitis │The Best Viral Infection Treatment Approach“, was fascinating simply because this Williams is so darned honest. Williams is a Doctor of Oriental Medicine and the author of the 2002 book, “Viral Immunity: A 10-Step Plan to Enhance Your Immunity against Viral Disease Using Natural Medicines“, who’s been treating ME/CFS/FM patients for decades. (He’s also done fieldwork in some really exotic places. Williams is now partially retired.).
Williams starts off by flat out stating that when he first saw chronic fatigue syndrome/fibromyalgia patients, he (mostly) believed them, but in truth he really couldn’t relate.
I believe that these, most of them, had a real problem. I had already been working with this for approximately 10 or 12 years. Some of them did improve, so depression or neurotransmitter dysregulation was part of that, but most of them didn’t. I still was not sure. I was male, the CFS patients were mostly women. I didn’t relate. I could treat, I could examine… I wasn’t sure, real or not real, and how could they be that tired, how could they be that weak, the things that they complain about. It wasn’t just tiredness like you would take a nap and you recover from it. They also were weak. Weak meaning difficulty picking up things or lifting or vacuuming and getting tired from vacuuming.
Then, on a trip to the Amazon, Williams got sick – really sick. He got so sick that when he got home he was so weak he could hardly move – and THEN he could relate.
I was so weak, I couldn’t hold a pencil. It literally would tip out of my hand like that. I would be at my desk like this, and I would watch the pencil just go like that, fall down on my desk. I was weak and tired. I couldn’t wash my dog. I’d be in bed for the rest of the afternoon. My god, this is how chronic fatigue people feel.
Williams is a Doctor of Oriental Medicine with a focus on treating viral infections naturally.
It took him years of using natural therapies to mostly recover, but mostly recover he did. He still has to pace himself but he can exercise. Since then, Williams has treated thousands of patients and he’s focused a lot of attention on treating pathogens both with drugs and naturally.
His symptom profile of a virally reactivated ME/CFS/FM patient is a pretty general one: someone with a fever or low grade fever, sensitivities or allergies, constant fatigue, generally not a sore throat, gastrointestinal problems, low diversity gut microbiome, not helped much by probiotics, but sometimes helped by prebiotics.
After Ari asked him how helpful antiviral therapy really is, Williams gave a devastatingly honest answer. This doctor who has devoted his career to helping this group of patients still finds this disease “very difficult to treat”.
Well, Ari, that’s the difficult part. If it worked so well, we’d have less sick people. What you have in these cases is ambiguous symptoms that as a rule don’t lead to a classical disease diagnosis, right?… Then we start from there, which makes it very difficult to treat from my experience.
ME/CFS, he says, is really very resistant to therapy! Go figure! Well, we know that, but having a doctor actually state it is incredibly refreshing. Williams’s goal is not to make people well – he does do that at times – but for the most part, to get some benefit for his patients.
The other classical characteristics of ME/chronic fatigue is that it’s resistant to therapy. You have ambiguous symptoms on the one hand, you have resistance to therapy on the other hand. What I want to do is bring some sense to a path so that I can get some benefit for that patient. That’s my model … I wish I could say (it works well in) a lot of cases, but I can say it works well in some and a few patients respond really well.
In a flash, Williams highlights the dilemma that many patients face. Could they be the one? The problem is that determining if they are the one is not going to come cheap. The long list of traditional and alternative approaches this functional doctor uses is large and varied – he’s clearly done his homework – and is going to cost a pretty penny. Even with that, success is not assured I suspect that few people can afford such a comprehensive approach to their illness.
Near the end of the podcast or article, you’ll find out about a typically complicated case of ME/CFS which had what Williams called a “reasonable” result. It took time, trial and error (Williams called her case a “curvy straight line”) and she never recovered, but she was 60% better – a good result in ME/CFS/FM.
- Listen to the Podcast or read the Ari Whitten / JE Williams Interview here.
- Check out other podcasts by Ari Whitten.
- Check out JE WIlliams website and his interesting blogs.
Take the Alternative Health/Functional Doctor Effectiveness Poll for ME/CFS/FM
A huge question facing many ME/CFS/FM patients is how much to spend on potential treatments. With no FDA-approved drugs and a limited number of prescription drugs (which have their own co-pays) available, the list of treatment options is pretty small – until, that is, one steps into an alternative health/functional medicine practitioner’s office.
There, one is often met with a huge number of possible tests and treatments – all of which need to be paid out-o- pocket. Because experts are rare, travel costs can come into play as well. Because ME/CFS/FM are complex disorder,s it may take time (and more money) for the practitioner to get a handle on your case. The point is is that stepping outside of the traditional medicine model is always expensive – sometimes very expensive.
Some people have an easy decision – they simply don’t have the money. Others are in good enough shape financially that medical costs are not a real problem. Many others, though, are faced with some gut-wrenching decisions. Should they risk their financial resources in hopes of getting better (and getting back to work) or should they give up their search for health and shield their finances?
This poll was borne out of those questions. It should be noted that this is not a scientific poll. To get that, we would have to include a representative sample of patients from alternative health/functional doctors. Plus, we’d have to identify our practitioners. Our sample isn’t representative at all: it doesn’t include many people for whom these treatments worked really well and who then went on with their lives, and it includes all sorts of practitioners. In short, there’s really no way to tell how you’d fare with any particular practitioner from this poll.
The Alternative Health / Functional Medicine Practitioner Effectiveness Poll
For the purposes of this poll, I define alternative health / functional medicine doctors as doctors or professionals (e.g. naturopaths, osteopaths, doctors of oriental medicine, etc.) for whom alternative health treatments make up a substantial part of their treatment regimen, and who provide their clients with a wide variety of alternative health treatment possibilities.
Some people have seen many alternative health practitioners. This poll asks about your experience with one practitioner – the one who helped you the most. At the end, it also asks how much out-of-pocket money you’ve devoted to becoming healthy, and how many of these practitioners you’ve seen in your search for wellness.
FInances and Your Health! Looking for Bloggers
Talk about a crucial area. Health Rising is looking for people to report on how they’ve dealt with the financial implications of having ME/CFS/FM and any financial strategies they can recommend. Health Rising will help with any blog. Please use the contact form or email me at cortrising@gmail.com if you’re interested.
Had it for so long. Being vertical just feels wrong. Besides all the pain and illnesses and inability to pick up my arms or for my neck to hold my head up or hold that pencil, every time I get vertical, something that seems to come from so deep inside me that it never comes close to reaching my consciousness, must be some kind of primal sense, starts alerting my body of DANGER!!!!! DANGER!!!!!!!DANGER!!!!!!! and to lie down, get horizontal. NOW!! NOW!! Help. Please help. Doctors, researchers, Cory, anyone who can still think. Who can go through the entire sequence of a thought.
try SALT & WATER? many yrs. ago I tossed it in my mouth and about 1 minute later was upright and felt somewhat better! HIGH BP now so can’t do this anymore. :>(
Water and salt got me through no air conditioning
During hurricane
Now I stock up on electrolyte water like Smart Water and chips of some kind for emergency go to.
Years back, I tried increasing my salt and water intake to see if this would increase my blood volume and thus help me stay upright. My body’s response was instantaneously positive. After a while though, my kidneys compensated by peeing out the ‘excess’ salt and water. I forced my kidneys (and my adrenal glands?) to cooperate by building up to a dose of .25 mgs of Florinef, four Thermotab salt tablets and a ton of water. This regimen may not be for everyone, but it helped me live a pretty decent life with ME/CFS for about 20 years. As often happens, however, my body decided to switch gears and I can no longer tolerate Florinef nor salt. Oh well!
If you can fall asleep fast enough after getting up to go to the bathroom, don’t forget to drink before sleep and every time you get up.
It helps me somewhat to stay hydrated at night, a bad period for hydration. It’s against traditional sleeping advice, but many patients wake up many times a night anyway so it may not affect sleep negatively for some.
This sounds like orthostatic intolerance to me in some form. I remember the race to get flat (horizontal) and trying to sit up and finding myself unconsciously sliding down toward a horizontal position. There is treatment for this! It is called NMH or neurally mediated hypotension or POTS or something else, all forms of Orthostatic Intolerance. There are drugs like Florinef and others and salt plus fluids that can help you. Please see a specialist!
Exactly! 15 mg prednisone gets me up and moving around . But it may not be the anti inflammatory effects, but the increase in blood volume. Of course, can only use this med on rare occasion.
I always feel great and have lots of energy on prednisone and wish I could take it indefinitely!!! Alas the side effects mean I can’t, particularly on my diabetes ?
My sympathies Linda. I’ve had that part of this wicked condition for about 14 years. After 3 years of it I finally went on disability for ME/CFS. I’m really tempted to pursue a workup for spinal leak after reading Cort’s article https://www.healthrising.org/blog/2018/07/21/dysautonomia-conference-cerebral-spinal-fluid-leak-pots-me-cfs-fibromyalgia/ The problem is how much would that unpleasant procedure knock me back if it was not a fix for the problem. Like I said though, I am tempted since it dangles the possibility of basically a cure if that IS the problem.
Oh God! I totally GET this feeling! I dont even feel right sitting or in a recliner! I HAVE to be lying down to be able to even have the chance to concentrate on anything. The way you explain it is perfect.
Great blog as always,Cort.
I’m writing not so much about this one, but a general comment for which I must not be alone about the growing preponderance of videos in advocacy posts. Videos are harder than reading words for me, pushing me toward sensory overload quickly plus they contain info that is not easily shared with a doctor or other (even alternative, per this discussion) healthcare practitioner. If a connection like this has a video can they also provide a transcript? I am beginning to ask this of advocacy groups too. Thank you so much.
Me too! I hate videos; they’re slow, distracting, worse comprehension… so glad you said something!!
Me, too. I hate videos. Dont hold my attention and my mind wanders waaaayyyy off course. No more videos.
I prefer to read rather watch a video too. But I can watch some TV programmes – strange.
I think it is something to do with attention. Watching someone stand there and talk can’t keep my concentration going. Watching a story with actors keeps me focussed.
AGREE! I just don’t have the where with all to watch a video. Too exhausting.
That’s funny. I have never particularly enjoyed video’s either…They take too long – but they are quite popular.
should ask “Not well enough to leave home anymore”.
Too much dr.s and NOTHING to help and not strong enough to fight this. HOUSEBOUND
I got hit at age 51 years. Previously taught Yoga and was a Counselor – leading a happy life. I’m, now 82 years of age – 29 years have passed, gradually symptoms have got worse. I’m now homebound, use a wheelchair most days. No help at anytime from the medical establishment, seemingly “not interested” – when one gets to the 80’s the feeling from physicians are “she’s old, going to die soon anyway – go home and enjoy the good days”….what good days?
Oh my, can I relate! (you’re old & gonna die soon anyway!)
I was 67 & extremely active when I got the classic symptoms of every joint aching, blinding short (30 second) headaches, incredible night sweats & the fatigue, no, total exhaustion that followed has gotten to the point I’m almost ‘housebound’.
A slow steady progression downward.
(I’m VERY skeptical of docs who claim they have a ‘cure’)
I have a GP doc who listens & is writing a personal letter to gastroenterologists to have FMT (fecal microbiota transfer) as it seems to be helpful (in a poorly done study) for Lupus, MS, & …CFS…
Not overly optimistic but with no side effects, what have I got to lose??
My suggestion? Keep looking for a doc who LISTENS!
Martin, I had the fecal transplants in Tampa, FL, five days worth and no improvement. After suffering with CFS for over 25 yrs. (I’m 57), I’ve had a miraculous recovery after having bioidentical hormone pellets implanted. They have completely changed my life. I don’t believe it. I am so active and am regaining strength every day. It’s heartbreaking to think how I’ve suffered. I want to tell everyone about this.
Hi Diane, I really encourage you to leave your story on Health Rising’s Recovery Story section so that others can benefit.
https://www.healthrising.org/forums/recovery-stories/categories/recovery-recovering-stories-click-to-see-categories.123/
I second that Diane! I suspect sex hormone drama in my case & would love to learn more about this.
Diane, your story is interesting to me. I was working full time as a nurse at 63. I was on HRT via a patch and was diagnosed with breast cancer. Had a mastectomy with reconstruction. Of course, I had to stop my hormones. I was thinking I had some type of energy issue before that time but after my surgeries, I developed full blown CFS. That was 6 years ago. I’ve often wondered if the CFS was caused by the sudden hormone withdrawal. I had a hysterectomy and ovarectomy when I was much younger and had been on HRT for years.
Treatment resistance I would say comes from the work of Dr. Stratton he says C. Pneumonaie is treatment resistant & I would also like to see this Doctor above send samples to the Houston Texas Genetic lab on
these patients & test them for multiple copies of the tryptase Gene found by the NIH-NIAID key in tryptase on the Home page here the test should open up & it cost only $169.00 with 3 to 4 weeks for results to
come back, it must be an MD referral since it is a Genetic test there. http://www.genebygene.com I doubt very very much a virus is any culprit & it would be nice if you could interview Dr. Joshua Milner soon Cort even
maybe do a Video on his important findings on tryptase
Thanks for the idea Aidan. I will put him on the list.
*oophrectomy*
I am no longer well enough to access treatments and extremely wary of anything that might backfire because my health is now so fragile.
Not sure how to answer as I did improve some, but only while utilizing the therapies.
I used alternative therapies for 2 and 1/2 years. I felt like it helped me function as well as I could within the framework of having ME/CFS. I never felt like it got at the root of the illness and I certainly did not recover. After the 2 1/2 years I could no longer afford the therapies and it took about one year before everything I had gained collapsed and I actually got worse.
An example would be that I was able to build up to one mile on the treadmill over a 12 month period. I was never able to build beyond that and about one year post stopping the therapies I had a severe relapse and could no longer do anything on the treadmill.
I can really indentify with the unaffordable part of treatments that work. I am now 63 years old going through a divorce after
30 yes of marriage and wondering how I’m going to survive on my SSDI benefits. I have improved with alternative therapies and have tried many different types over the 12 yrs of living with fibromyalgia. My Medicare advantage plan doesn’t cover any alternative therapies except aquatic therapy with a limited amount of sessions which was great as for the short time allowed. The 3 others that have worked the best for me do not accept medicare of any type because they are cant afford the small Medicare payments. So what do we do? I don’t want to take any pain or Fibro meds they have raised the co-pays on generic meds by calling them preferred generics which makes them unaffordable also. It seems like a constant catch 22.
The alternative Doctor diagnosed me, but most of his “therapies” were not covered by insurance. I did get to use the chiropractor in that office. He helped with back pain from the fibro, and was also the nutrition advisor. This doctor left town before I could use him enough to try to get better, so it’s not a good judge of what you want, really, BUT, he is THE ONE who diagnosed me, so for that, HE WAS TREMENDOUSLY HELPFUL! Validation is so crucial!
Agreed. Simply validating that one has a real illness definitely takes the load off.
The poll above is challenging to me for two reasons. One, the financial questions would be more useful if they were put within a time frame—there’s really no basis for comparison if one person’s spending over course of one year and another person’s is over the course of 5 or 10 years. Random time frames give us no context, thus our answers have little meaning (why use precious energy to answer a poll that won’t serve me or others?). Second, the wording is awkward. To address both concerns, I’d recommend rephrasing along these lines :
– In the past year I’ve spent up to $2,500 on a functional medicine/alternative health MD and my health has ….
– Over the past five years I’ve spent up to $5,000 on a functional medicine/alternative health MD and my health has…. etc.
– I became ill in [insert answer]. Since that time I’ve spent at least (list amount options as subset: $5,000 / $7,500 / $10,000 / $10,000–$15,000 / $15,000–$17,500 / $17,500-$20,000 / etc.
I think these are important questions and I’ve benefited from results of Health Rising polls—often on topics that we, as people living with fibro and/or CFS, know are critical but the health industry hasn’t caught up with us yet.
Good points. I did think of phrasing the questions in terms of the most recent practitioner seen (which I worried might have cut some better experiences) but not in a recent period of time. I decided to ask about the best experience someone had seen even if that best experience was 10 or 15 years ago. A more recent time frame, though, would have ensured that people responding has utilized the latest therapies.
“…whatever doctors are doing they are not getting at the core of this illness… …Something is missing.”
I tend to believe a big missing chunk of the puzzle is the behavior of the system rather then seeing it as a collecting of loosely interacting components.
Plenty technical systems can work well and suddenly “start to have a live of their own” without any part being broken. Add a few half broken or worn parts and things get worse. There’s no fixing of these things by only replacing the broken parts.
How many times do we need to unplug systems to have them work well again for a time by just plugin them in again? And that’s for simple household stuff.
Maybe they miss the “ghost in the system”?
Oops. How did the previous comment end up here? Must be brain fog; may be deleted. Sorry Cort 🙁
I am feeling some better after 6 months on the Root Cause Protocol after 25 years of severe illness and trying many things.
Wow. How did you come across that? I know that copper is part of the RCCX hypothesis but don’t know if it fits in here.
I am interested by the comment about not responding well to probiotics – seeing I have just started growing my own following the online advice of Dr Myhill. Oh well, I might be able to save my money if it doesn’t help.
The thing is, everyone is different, and what works for one may or may not work for others. Don’t give up on an idea just because someone eles said it didn’t help (not that you are, just speaking generally, here). Keep growing those probiotics! Even if they don’t help your ME/CFS, they are still healthy in general. I think sometimes we are looking for something specific that will help, but my expereience has been that improving my overall health through a variety of practices, while not a cure, has helped me improve to about 80% of my “normal.” Nutrition is a big piece of that, so keep at it and good on you for making that effort!
Unwashed sprout leaves are a good source of billions of natural probiotics. I grow them in a mason jar for cheap, then use them raw on salads, in green smoothies, etc. I noticed the difference in gut function within 2 weeks.
I tryd a lot, regular, alternative, 30 years of illness, always going downhill, 99% bedbound, do not know how to survive anymore.
we need real treatments and real diagnostic tests and please urgently.As in other deseases.
Agreed. I think we can all agree that whatever doctors are doing they are not getting at the core of this illness. I think they would agree to that. Something is missing. The great hope is that that something – or part of it – is already out there in the form of a repurposed drug. Certainly Ron Davis and Nancy Klimas are looking hard in that area.
“…whatever doctors are doing they are not getting at the core of this illness… …Something is missing.”
I tend to believe a big missing chunk of the puzzle is the behavior of the system rather then seeing it as a collecting of loosely interacting components.
Plenty technical systems can work well and suddenly “start to have a live of their own” without any part being broken. Add a few half broken or worn parts and things get worse. There’s no fixing of these things by only replacing the broken parts.
How many times do we need to unplug systems to have them work well again for a time by just plugin them in again? And that’s for simple household stuff.
Maybe they miss the “ghost in the system”?
I live in Canada so thank God for good health care. That being said, I still have spent 5-10,000 over 20 years. on alternative therapies not covered by health insurance.
My CFS expenses have mostly been for books and the recommended supplements. Not too different than before CFS, when I was a divorced single mom, an athlete, and just trying to ‘stay healthy’.
Then ‘serious’ CFS threw me for a loop. In 20/20 hindsight, I had mild CFS (0-10 level 5?) for years. Kaiser HMO was of zero help, only constant misdiagnosis.
Learning the EBV was the main cause, 96+% of adults carry it, and that there were different degrees of CFS helped.
A physical, chemical, or emotional stress can set you back. Medical Centers SHOULD be VERY familiar with CFS!
Kaiser HMO, with 1500+ doctors on staff, and zero who know about how to treat CFS or a chronic EBV infection, per my GP doctor (she made a lot of inquiries, as did I).
Naturopathic doctors weren’t much better, but for a $250 office visit mentioned things like taking not only a good ‘optimal’ Vit/Min,
but more
magnesium (“as much as tolerated”),
CoQ10 (100-200 mg/day, ubiquinol form),
L-carnitine (1500mg), Niacin/B-3,
sublingual B-12,
extra ‘Whole Food’ Vit C complex several times per day (NOT ‘just’ ascorbic acid),
Mercury-free Omega3 oil capsules (or eat more wild caught Salmon, etc.),
anti-viral L-Lysine,
D-Ribose (a special sugar),
Iodoral (iodine/iodide 12.5 mg) and Selenium (200 mcg), …and to continue to keep my blood triglyceride levels low and Vit D3 over 40.
BP and cholesterol are just inflammation markers, usually related to diet.
Some ND’s also mentioned taking DHEA, but that gave me pimples. Cytomel(T3) for a year got rid of any RT3 and the cold hands and feet.
…It was mostly all stuff I had already read about and was doing.
Take the above standard recommendations and save $250+.
A holistic doctor is very helpful for getting people off Rx (chemical) treatments for chronic conditions, since obviously they are not curing it, but sudden withdrawal is dangerous.
After retiring early 4 years ago (due to the CFS getting worse) and then having nothing else to do but study up on it, I learned a lot! (Also since have forgot a lot.)
I love HealthRising.org since Cort is on top of posting about the latest CFS research, even if some of it is barking up the wrong tree (like the genetic cause, or trying to use Rx chemicals (toxins) to cure it).
Best bet for those with very little extra money:
•Dr. Sarah Myhill’s CFS website. She is in the UK.
•HealthRising.org, including the comments (some smart people lurk here!)
•Take the above mentioned supplements and eat A LOT of organic fruits, berries, and veggies.
•Spend $15 on the book ‘Medical Medium’ by (health guru) Anthony William…then his 3 other books, which expand upon how to knock down a viral infection and clarify the ‘whys’ and ‘how-tos’ behind everything.
One thing was the ketogenic diet vs the high-fresh-fruit low fat anti-viral diet. The two approaches seemed in total conflict to me.
However, both deprive the virus or cancer of the food it needs. Phytonutrients prevent cancer. Low fat (for a month or so) helps clear the liver.
Here are the Cliff Notes:
Bad Virus + Heavy Metal toxicities + run down immune system = chronic illness.
1. Medical Medium’s recommended Heavy Metal Detox green smoothie as often as tolerated (every evening?) or include the main ingredients in the day’s foods until you feel better (more below);
AND
2. Anti-viral Diet:
gluten-, dairy-, egg-, pork fat-, sugar-,canola oil-, MSG-, GMOcorn-, GMOsoy- and toxin-free diet.
Hungry Viruses are tiny, so ‘cheats’ slow down recovery.
Most ‘diets’ only eliminate some of the foods above, hence only give partial results.
Some of the above foods you may already avoid or not eat much of; eliminate another category every week or two as you find adequate substitutions in your favorite recipes.
Avocado or Coconut is the preferred fat source over ghee or a lot of nuts.
Go for low-fat vegan sources of protein (incl. spirulina) in most your meals, and lean organic meat, fowl, or fish once a day (if desired).
Eat A LOT of phytonutrient-filled and enzyme-filled organic fresh or frozen veggies and fruits for a month (or two) and see what happens! Continue until you feel better and ‘normal’ once again.
Vegans and Paleo people can both follow this diet plan. Only caution is if someone is taking daily Rx medications for a chronic condition; the meds would need to be reduced or eliminated under medical supervision; otherwise the drugs may cause an adverse reaction. A good holistic doctor can recommend natural alternatives (if need be), since about 80% of Rx drugs are derived from natural substances.
My health-nut biomed engineer son does my grocery shopping, and most of it is at Costco, Trader Joe’s, our local grocery store, Whole Foods (now that they have dropped prices!), and nearby weekly Farmers Markets. We have cut down a lot on meats, so food costs have stayed about the same as before, when we were on a (Mediterranean-type?) ‘healthy’ diet, not including the occasional Costco pizza (yum!) or frozen dinner in-a-bag. We loved Dave’s Killer 21-grain Bread and shredded cheese on everything, and ate eggs almost every day, since they are in a lot of baked goods.
AW’s premise is that these foods (listed above) are what the bad viruses LOVE to eat, too, so just don’t feed them!
Scientists use eggs in the Lab to grow viruses for study and mass-produced vaccines.
(–I hadn’t thought of that before).
It explains why I was NOT losing weight or getting better, despite ‘eating healthy’, seeing my doctor, taking supplements, exercising (a little), resting (a lot) & cutting calories (1300/day).
It makes sense to me; how about you?
Are some of the virus-feeding foods in your diet? Have you recovered from CFS, or not?
Most of these forbidden foods (esp. dairy and cheese) are also known to cause inflammation and/or mucus build-up in people, so reducing them is good for other diseases like asthma, sinus issues, and COPD, too. Less mucus also gives less places for bad viruses and bacterias (like Strep) to hide from the immune system.
Anthony William also posts recordings of his weekly 55 minute ‘Medical Medium’ radio show on the SoundCloud App (for free) on various health topics; It has helped me understand some of the EBV-related issues (like where EBV-related cancers come from) better.
The somewhat ‘chatty’ podcasts (on auto-play) has also helped me sleep better! Works better than Ambien. 🙂
They keep my son awake (“too interesting!”).
Since the ‘good’ foods, herbs, teas, and supplement lists are overwhelming, Anthony does recommend a lot of certain ‘Top 20’ vegetables, fruits & berries, “anti-viral” herbs and teas (such as Lemon Balm) in his books. Some are once (or more) a week, some everyday.
Also certain supplements, esp. the additional adenosylcobalamin form of sublingual B-12, to support the nervous system (vs muscles), and extra zinc, since our soils are almost fully depleted of it.
Anthony’s 3rd book, ‘Life-Changing Foods’ goes into more detail.
I have slowly eased into the diet plan and have been following it loosely (80-90%? ..I still don’t eat enough veggies!) for 1-1/2 months now. I have seen some improvement, plus a (much needed) 1 lb/week weight loss without consciously cutting calories.
Only complaint is that the HM Detox green smoothie leaves me feeling spacey for a day or two afterwards. I assume that is in response to the (mercury?) detoxing, since 3 days later I feel a tiny bit better than before.
My Nutribullet version of the Heavy Metal Detox smoothie:
Organic Spinach/Kale mix
Frozen wild Maine Blueberries
Frozen banana chunks
Fresh Cilantro (handful)
Atlantic Dulse (2 T flakes)
Barley Grass Powder (1 tsp.)
Hawaiian Spirulina (1 tsp.)
Filtered chilled water
opt.:L-lysine powder(1 tsp.)
Can also be made with fresh OJ vs banana + water
There is the late virologist’s Dr. Martin Lerner’s ATP energy-building supplement Protocol (MLP), which I assume EVERYONE here with ME/CFS/FM/Lyme/MS/EBV (etc.) is already doing, since that has been the closest thing to a ‘cure’ for awhile; Most ‘CFS Specialist’ medical practioners have it mentioned directly or indirectly on their websites.
MLP helped bring me from a CFS Energy Index Score of 1 to a 3 in a year. I went from bicycling 3 miles (r/t to the nearby park) to 32+.
Also FM pain decreased. &
Heart Rate Variabilty (HRV) (thus heart and Vagus nerve health) improved, too.
Still fighting the fatigue and brain fog; curing that is next! Trying adaptogens; Nootripure.com/UM/38
has a good educational ‘University’ link on their website.
So as Cort has surmised, depending on our current Health Care system to get ‘Healthy’ is a waste of time and money; from what I have read, it is going to continue to be off track for the next 20 to 30+ years.
Please read and learn. The answers to good health are within you (hint: it is NOT by eating chemicals! Just ask Mother Nature!), and it is how mankind has survived since pre-Neandrathal times. Your intuition will tell you what makes sense, just like it tells you the fatigue and pain of CFS is not ‘you’ nor normal, despite everything.
Sorry for the long post, but if it saves someone $5,000+ & years of wasted time, it was worth it!
Please Reply with your results from the ‘Medical Medium’ Detox + anti-viral diet if have tried them for 3+ months.
(Did it help?)
Great overview Susan! Thanks for laying your experiences out 🙂
I’ve done a similar protocol to you, Susan. FYI I have CFS/ME, Fibro and severe MCS, along with spinal problems from injuries (skiing, accidents, etc.). I do find chiropractic to be helpful in my case, as is massage, acupuncture, and “some”physical therapy (have to rest afterwards) Fresh foods and organic are best.Found that Monolaurin is of substantial benefit to knock out the viral element. Since I have high PAI-1 (thick blood) which contributes substantially to CFS/ME that taking Serrapeptase and K2 with my Vitamin D is helpful (Nannokinase also helpful). Also repeated attempts to detoxify because heavy metals do plague my life and have a similar juicing/ smoothie that I take on a regular basis to help detoxify.
Also find that going outside and walking without shoes – making that connection with nature is important – some call it grounding. Find gardening helps tremendously, even if it’s minimal – something beautiful to look at and nurture. Also doing art…
Prayer also helps substantially and proven remedy…
LOVE this, Susan. So many details, lots to try. Very similar to the approach I’ve taken, amd after many years of it, I consider myself almost back to normal (still have to get adequate rest and avoid overload, but am able to do most things as a normal person does). Thank you!
Susan or anyone that knows .. where can i find details about “Dr. Martin Lerner’s ATP energy-building supplement Protocol (MLP)” ? thank you .wonderful that you were able to go from 3miles to 32+- Yay!~
Susan, who said ‘EBV was the main cause’?
With all due respect, that’s unsupported nonsense. As you yourself said, 96% of the population has it. They clearly don’t have ME/CFS, so I think we can put that to rest, pardon the bad pun.
Also, if it was, then the ‘honest’ doctor’s patients would be recovering or recovered. No doubt he’s well intended, but clearly doesn’t realize how complex this illness is.
Listened to the podcast. Quite interesting, but not much new or very specific to ME (CCC). Questions are good, answers I think patients in general are familiar with.
What I find odd is not mentioning PEM and sleep disturbances when describing patients characteristics. Makes you wonder what kind of patients Williams are talking about.
My guess is that most people’s goal when seeing a doctor is to get at least moderately better. Here are the percentages so far of people who got at least moderately better.
They are quite low – nowhere near satisfactory for any disease – pretty much jive with what Williams is saying. These are very hard diseases to treat; sometimes it works and often times it doesn’t.
Again you can’t use these results with regard to any one practitioner. Because the survey melds all sorts of practitioners together you can’t use it without regard to any practitioner type. Importantly, we don’t know anything about patient compliance. Plus people on the internet are people who didn’t get well.
One of the questions was whether spending more helped? The percentages of those helped moderately or more, were however, except for perhaps a little bump at the very high end, pretty similar.
People who got at least moderately better
>2500 – 14% (123 responses)
$2500-$5000 – 12% (73 responses)
$5000-$10,000 – 19% (69 responses)
$10,000-$25,000 – 15% (39 responses)
$25,000 – 23% (27 responses)
A little elaboration. First: let me stress that I have nothing against doctor Williams in any way. He surely is a doctor doing his very best, but not describing cardinal symptoms is a little worrying if he really is trying to describe ME (CCC).
This comment may belong to another post and place. At the same time the fatigue rhetoric is always present. That is a large problem that needs to be addressed properly.
In order to advance we need so many things in place. It is hard to know where to start. It may seem that language and labeling not is that important. Well, I think it is very much about important nuances and distinctions. So guess I just have a really really hard time with the fatigue terminology and “concept”. Laymen will for sure never get what ME really is, the severity, the impact, the devastation. Doctors, who may have a somewhat wider understanding of “fatigue”, may have a chance to think once or twice to get it close to right, but unfortunately I think most doctors with scarce knowledge will get it wrong to. I’m so fed up of “fatigue” and afraid we’ll never get across or only to the ones experiencing it, if the fatigue terminology goes on and on and on. Among many things, I wish the word fatigue soon will be erased out of ME vocabulary.
Wishing everyone a PEM-limited summer.
I suggest anyone seeing or considering seeing a naturopath read Britt Marie Hermes blog a former Naturopath:
https://www.naturopathicdiaries.com/about-britt-marie-hermes/
Also any dr that want’s to do saliva, urine, blood, or hair test’s, cough! cough! JE Williams, for vitamin deficiencies is almost certainly fleecing you:
http://www.quackwatch.org/01QuackeryRelatedTopics/Tests/tests.html
https://sciencebasedmedicine.org/bogus-diagnostic-tests/
https://www.quackwatch.org/01QuackeryRelatedTopics/spotquack.html
Any dr that uses acupuncture cough! cough! JE Williams, to cure a long list of conditions is almost certainly fleecing you. Here are a couple of good articles on acupuncture:
https://sciencebasedmedicine.org/reference/acupuncture/
https://sciencebasedmedicine.org/false-claims-for-acupuncture/
Britt Marie Hermes is a disgruntled former naturopath who spreads lies about naturopathic medicine. She couldn’t cut it abd now makes her living damaging this profession. And Quackwatch is run by an arrogant Yale neurologist who also spreads lies about alternative, integrative, and functional medicine.
It’s gotten to the point that if either of these self-serving sources are against something, it’s something well worth checking out as a potentially useful treatment option…
I’ve benefited from high dose vitamin C cancer treatment, chelation, ozone therapies, and nutrient IVs and am convinced I’d be dead today if I hadn’t gotten them. There is good evidence for all of these, yet I’ve seen them panned on both sources.
High quality naturopathic care should be allowed in all states, and covered by insurance as it is in my state.
A natrapath is the person is the practitioner who has helped me most with symptom management. A homeopath and acupuncturist also helped a lot I just can’t afford to keep seeing them. They may not be able to cure us but they at least work to help manage symptoms and improve life quality. As opposed to many Drs who said it is in your head or go home and deal with it.
Cort,
The questions were challenging for me, too. The way I answered was that spending any of the smaller amounts kept me about the same or gave me a little improvement, but spending over $150,000, as I have over the past 3 years has led to significant improvement. I was very ill, but I am starting to see a light at the end of the tunnel. I believe anything less is just a drop in a large bucket.
While I’d love to believe there is a magic pill, I think that this is a multiheaded beast that has to be hit hard and steadily on all fronts over a sustained period of time. And the conventional medical community is pretty useless in dealing with this disease – no drugs, no treatments, and no idea how to properly test patients to identify treatable abnormalities.
I saw more than a dozen MDs when I first became ill, and all they offered was CBT, exercise, and opioids (even though I wasn’t depressed or in pain). Up to Date and the CDC info were out of date…i was hsving to spoon feed doctors research articles and still they couldn’t or wouldn’t help.
But, I found a wonderful functional medicine doctor who is a preferred provider on my silver plan insurance, and he ran both very conventional labs and “alternative” labs, and found infections,immunodeficiencies, nutrient deficiencies, endocrine malfunction, toxicity and a poor detox system, and mitochondrial dysfunction.
These results led me to 4 specialists who all have a piece of my care, for POTS, mitochondria, and ME/CFS. The ME/CFS specialist, a plane ride away, quickly took my labs, drilled down and has given me heavy duty treatments for my immune system and infections.
But my functional medicine doctor, an ND, stabilized my sex, adrenal and thyroid hormones, gave me immunomodulators, dealt with my nutrient deficiencies, and helped rid me of a lot of toxicity. And I take a lot of supplements, take POTS and MCAS meds and hormones, snd get one to two IVs a week (IVIG and mito cocktails)
I’ve tried some interesting treatments along the way, including hyperbaric oxygen, PEMF, prolozone, biofilm busters, but I’m also on conventional treatments, too.
It’s like climbing out of the abyss. If my doctors and I had it to do over, it could be more efficient and cheaper, as there have been twists and turns on this path, but everything is an educated guess based on the state of the research today, but some hood guesses hsve been made, too.
I realize how fortunate I am to live in a metro area with excellent alternstive care, and to be able to pay for the care not covered by insurance. My wish is to help people understand there are answers out there and to get insurance, Medicaid and Medicare to pay for the treatments that have been so helpful to me and other patients I know.
Right now, this is a battle to be won one patient at a time by identifying individual abnormalities and chasing them down and prioritizing which treatments to do when.
I believe that the stats on ME/CFS recovery are so dismal due to lack of access to knowledgeable doctors, the lack of coordination between conventional and alternative medicine, the lack of good lab tests and the astronomical prices for healthcare in general, and for drugs like valganciclovir that are subject to price gouging, and the lack of any useful standards of care, giving governments and insurance an excuse to not help us.
And lack of money…this is just not an easy battle to win.
Thanks for sharing your story Learner and congratulations on getting better. I hope you continue to improve. Finding a good doctor or doctors, having the resources to utilize those doctors properly – it’s truly not an easy battle to win but congrats on your at least partial success. I hope we can put your story on Health Rising’s recovery stories section ( https://www.healthrising.org/forums/recovery-stories/ ) some day. 🙂
I’m 66 and have had CFS/ME for 24 years. I would say I am running 50-80% of a normal life with treatment with the following: Levothyroxin for hypothyroidism, Testosterone from Women’s International Pharmacy in Madison WI 50mg/day for hypogonadism. For sleep: ambien 2.5mg/night with marijuana, 5mg 2X a night without weed and cyclobenzaprene 5-10 mg, HTP (otc costco) and 3 200mg ibuprofen 2X/night. Note: I don’t like the hangover weed leaves me with but the opioid epidemic has caused Baystate Med Practices to just blanket style cut back on any controlled substance, ambien, to save them from being investigated by the DEA. (Who knew Jeff Sessions was now my doctor?) They clearly put their behinds ahead of their patient’s well being on that.
I got the CFS/ME during a trip to Mozambique via London when I came down with what I thought was a cold on the London leg of the trip. I could not recover fully from it and when I went back to the gym I would crash every time 2 days later.
I know many feel CFS/ME is not a virus or virally caused. In my case I have observed the following. When I contract a cold or a bacterial infection that causes me to run a fever for a day or 2, when the infection or cold is over with (and if I don’t have a case of bronchitis) I feel enormously better and almost like being cured. My theory is that when my immune system goes into battle with a fever it blanket works on the virus (bug?) that causes CFS/ME and reduces the CFS symptoms considerably.
The downside is that I will then at some point overdo it with too much activity when my Type A personality goes back to work and I will then crash and the CFS/ME symptoms – brain fog, mild depression, loss of strength will then come back as they were. Need to rest more frequently.
I look at it like there is a threshold of wellness, above the line I call it, that when I can be on the top side of it I can actually live normally and stay on the top side for a few months, but once I overdo it with exercise, emotional stress or too much brain based work,(I’m a jazz musician/composer/performer) and crash I will be living below the line for years at a clip.
I also have had problems with the regular medical practice, Baystate in MA. Most of the doctors don’t really believe what I go through. I had a endocrinologist tell me he doesn’t believe in CFS/ME. It is very frustrating and I have a hard time not taking that attitude personally.
As I read these great blogs and see the many failed attempts that we all have had, I still wonder, what are we missing? What really happened to us? Is there a common denominator? Everyone is exposed to pathogens, travel, surgeries, etc. but why do WE get ill and stay ill. I have had a theory from the beginning of my illness (31 years ago)based on observing something unusual about our local support group members – that we are overwhelming introverts vs. extraverts and that perhaps that is an additional level of added stress, just as maybe Type A personalities would be.
Introverts (per the Myers Briggs Type Indicator) get their energy from pulling away from the outer world (outside their own heads) to recharge, and Extraverts get their energy from going to the outer world. Introverts can easily get sensory overload, drained of energy – sound familiar? Our brains are also wired differently than Extraverts according to what I’ve read.
Maybe ME/CFS is the ultimate protective mechanism for Introverts? If the world is “too much” for Introverts and Type A’s, maybe the body just tries to shut us down? I am an Introvert and a Type A. Even when I’m very ill I still try to function as a Type A and that never ends well.
The Myers Briggs Type Indicator (MBTI) has shown that 75% of the US population are Extraverts and 25% are Introverts. It is stressful to live in a world of Extraverts if you are an Introvert. Maybe a predisposition that affects the amygdala and the fight-or-flight response.
Thanks for that, needed it at the moment. Am introvert snd have to push through that to get on with life, but we know what happens with this disease when we ‘push through’ anything. Albeit, whenever ive been in s seriously bad space (emotional, mental) it has helped to go on an adventure.
Your comment has helped me feel it is ok to be introverted. Need to keep a lifestyle which foremost considers that or I get ill. Going sailing for 6 years was the healthiest I have ever been since starting on this cfs path
We have seen some success stories but unfortunately thus far in the poll – which has over 300 responses – in every category except the last (people who spent over $25,000 on a practitioner) more people have gotten moderately worse or much worse than people who have gotten moderately better or much better.
Getting moderately better is about the limit: very few people got much better. On the other hand a considerable number of people got much worse (from 6-20% in every category). Whether that happened because of the something the practitioner did or simply reflected a natural progression of the disease is unclear but at the very least the practitioner failed to stop the disease from getting worse.
Let’s keep in mind that there is a medicine, Ampligen, that restored function to about 50% of trial patients for many years. The federal health agencies decided to deny it to M.E. patients. The company that made it did not do a bang-up perfect job of presenting the case. But if the federal agencies had put forth even 0.05% of the effort, indulgence and sympathy that they put into getting AZT to AIDS patients (yes, I am aware of the dubious aspects to that launch versus the better drugs brought in through the Dallas Buyers Club, but I am talking about sheer quantity of effort from government to patients as opposed to other issues) at least half of us could be largely alive instead of mainly dead.
You won’t find any disagreement here. The lack of attention to this disease has been and continues to be criminal. It’s thirty plus years later for me – never would have I believed prior to ME/CFS that the federal government would so easily ignore so many sick people.
I’d like to leave a comment on how a video I watched on Lucinda Bateman’s website was very helpful on how to best handle doctor visits. She said doctors are very overworked often and are allowed 10-20 minutes per patient.
She suggested to only discuss the 2 or 3 symptoms you’re most having trouble with so you can come away with something that hopefully helps with some or all of those 2 or 3 things and the doctor won’t reel away from your (our) LONG list of ailments. That has worked out for me and my doctor has quit treating me like I’m nuts. There are usually several meds that could be tried for any given symptom and obviously there is no cure for our entire encyclopedia of symptoms. I’ve also had many prescriptions filled for a week’s worth rather than the whole 30 or 90 pills in case I can’t tolerate the med. I hope this helps someone.
Thanks Kathe!
if anyone knows where i can find where can i find details about “Dr. Martin Lerner’s ATP energy-building supplement Protocol (MLP)” ?
Susan mentions it above- thanks !
About 7 years ago my asthma got so bad and was diagnosed of EMPHYSEMA/COPD which was most likely due to the asthma. I was on double antibiotics and steroids, still didn’t feel any better. It was hell for me due to the severe difficulty breathing. About two years ago my sister in-law told us about Rich Herbs Foundation where she ordered herbs that treated her arthritis. We ordered the COPD herbal treatment after reading positive reviews, i am happy to report this COPD herbal treatment effectively treated my lungs condition. My quality of life has greatly improved and every one of my symptoms including difficulty breathing and wheezing are gone. I will be 52 soon and have never been healthier. Their official web page is www. richherbsfoundation. com.
About 7 years ago my asthma got so bad and was diagnosed of EMPHYSEMA/COPD which was most likely due to the asthma. I was on double antibiotics and steroids, still didn’t feel any better. It was hell for me due to the severe difficulty breathing. About two years ago my sister in-law told us about Rich Herbs Foundation where she ordered herbs that treated her arthritis. We ordered the COPD herbal treatment after reading positive reviews, i am happy to report this COPD herbal treatment effectively treated my lungs condition. My quality of life has greatly improved and every one of my symptoms including difficulty breathing and wheezing are gone. I will be 52 soon and have never been healthier. Visit their web page ww w. richherbsfoundation. com.