Dr. Nancy Klimas, Chief Medical Officer of the Chronic Fatigue Center for Research and Treatment for Neuro-Immune Disorders, Miami, Florida, and her associate Dr. Irma Rey
It was a pleasure to meet with people who believe in the disease, know its details, and understand the ordeals of its sufferers
This is by far the longest distance we’ve traveled for my disease. Steve and I wedged ourselves into those cramped Continental seats. (I’m always in the middle because he needs to sit on the end so he can more easily make multiple trips to the bathroom. That means I sit next to some stranger who might or might not want to talk, but who also must make multiple trips to the bathroom, causing me too frequently to squeeze my way out into the aisle.)
Because we would spend only two nights in Miami, we took only an overnight bag and therefore proceeded directly to our rental car after my wheelchair arrived from baggage. Steve was at my side the whole way and took over the difficult logistics.
He entered the clinic with me for my 9:30 am appointment, and stayed in the waiting room the whole day, until I finished at 5pm. I must have done something right in my previous life to deserve him.
The office staff is dedicated to Dr. Klimas and to the mission of the clinic:
“to use the latest scientific breakthroughs in therapeutics to provide comprehensive diagnostics and treatment plans for their patients. The integration of research, diagnostics and therapeutics within an extremely patient oriented clinic will help optimize treatments best suited for the patient’s disease type and avoid potential misdiagnosis or under-treatment due to a general or limited approach for treatment of the conditions.” http://www.cfsclinic.com/
It was a pleasure to meet with people who believe in the disease, know its details, and understand the ordeals of its sufferers. I was impressed by a friendliness and caring I hadn’t found with other CFS doctors, as well as thoroughness, expertise and the highest quality of medical care. Too bad Dr. Klimas’ clinic was only 3 years old; nothing like this existed during the worst years of my illness.
A tall lady (in her 50’s maybe?) with long straight light brown hair parted at the side, Dr. Klimas wears stylish eyeglasses but no makeup and dresses unpretentiously. I’ve seen her in various Internet interviews and she always wears plain slacks and a sweater under a white lab coat. She has an easy smile and happy voice that helps put patients quickly at ease.
After a long interview in her office, where she carefully reviewed my records (including detailed questionnaires I had completed and sent to the clinic earlier) and listened to my answers to her questions, she decided I should take a ‘tilt-table’ test, something I’d heard about but never had. I was strapped down like Frankenstein’s monster to an examination table and attached to EKG and blood pressure monitors.
For the first time in her long journey with ME/CFS, Carol gets on a tilt table – and receives two new diagnoses…POTS and neurally mediated hypotension
Nina cranked up the table until I was standing but able to lean back. There I remained for about ½ hour as she scribbled marks on a chart. After about 20 minutes, my heart rate soared and my blood pressure dropped. I was released from the table and given IV electrolytes for ½ hour, and then returned to the table for another half-hour.
The diagnosis: Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH), conditions which make one lightheaded, dizzy, nauseous, fatigued and cause headaches, visual disturbances, sweating, and breathing difficulties. Blood seems to pool in the feet and not reach vital organs, including the brain. The treatment: a small dose of a beta-blocker and continually gulping down electrolytes, like coconut water and Gatorade-type products. http://www.cfids.org/about-cfids/orthostatic-intolerance.asp
Nurses drew more blood from my overtaxed and complaining veins (I say ‘nurses’ because it took 5 of them and much stabbing to finally get the blood flowing) for immune system testing.
In a telephone conference a few weeks later, Dr. Klimas explained that the blood tests revealed I had a very low Natural K cell function (normal = 25%; me = 8%) and a high white blood cell count, indicating that my system was in “anti-viral overdrive”.
Oy.
“But we can help you,” she said. The treatment is Immunivir, an amino acid that stimulates the immune system, which has to be purchased from Canada. (The amino acid, not my immune system – though I’d be happy to buy a new one.)
I admire Dr. Klimas’ dedication to this disease, her patient, compassionate demeanor with CFS/ME sufferers, her skills and intelligence. Her push to increase research funding and her attention to the devastating effects on so many people, provide hope and validation for those of us whose lives have been turned inside-out. And for our caretakers.
I have visited the clinic 3 times, the last two with Dr. Irma Rey, who sees patients also at the new Institute for Neuro-Immune Medicine at Nova Southeastern University founded by Dr. Klimas. Dr. Rey is another compassionate professional, with lots of experience in the ways of ME/CFS and the immune system. She is patient and understanding and full of good humor, AND SHE ANSWERS EMAIL, LIKE, IMMEDIATELY! I am grateful for her expertise and intelligence.’
Full Disclosure
Carol’s low NK cell functioning and her high white lymphocyte counts suggested she was fighting off an infection
But full disclosure: As I write this in September of 2013, I am in the middle of a severe inflammatory cascade with symptoms I haven’t experienced in years. I’ve been taking Atenolol, the beta blocker, and Immunovir for 2 years and saturating myself with Electrolyte water for POTS and NMH.
But for some reason not even Dr. Rey can figure out, the headaches, brain fog, stiff neck, hot flashes, weakness, fatigue and body aches have returned with a particular meanness. The latest blood work revealed a continuing weak and pooped out immune system plus new viruses as well as a continuation of the ever-present HHV6, and so the treatment now includes the anti-viral Famvir and another trial of Low Dose Naltrexone (which I’d tried before but stopped because of difficulty sleeping – so now it’s LOW Low Dose Naltrexone for me).
I’ve had so many dismaying experiences with doctors: Doctors who don’t listen, who can’t say “I don’t know,” who hear only the symptoms that will fit your case into their specialty or pre-determined diagnosis; doctors who blame you for an unsuccessful treatment; doctors who inflate themselves like pufferfish, dismissing colleagues and belittling their patients; doctors who make money by selling products they prescribe; doctors who don’t remember you from one visit to the next and ask the same questions over and over without looking at their records; doctors who squeeze so many patients into a day so that a visit takes a whole morning or afternoon; doctors who endorse wacko treatments without hard evidence of success.
I’ve also encountered wonderful doctors, smart, experienced people with wisdom and compassion, who believe in my illness, take the time to listen patiently and offer what they can but realize and admit their limits and the limits of medicine in general. I’d prefer a cure, of course, but I know that ain’t gonna happen, and so at least for now I can rely on the strength, honesty and expert knowledge of Dr. Klimas, Dr. Rey and Dr. Hamm.
Carol pls write me privately
Thanks for this.
Small correction: the drug is spelled “Imunovir” not “Immunovir”. Most people seem to make this error presumably because they think it has two M’s like “immune”/”immunological”.
Thanks, you’re right.
Carol, Great feedback, my experience was equally as refreshing and is regenerating my hope for some restoration in the future as well as you describe.
Sorry to hear that you are experiencing so much discomfort and such a cascade of symptoms now.
It is good to know that your experience with Dr Klimas clinic has been good, even though you are worse right now. It sounds like it is good that they reply to your questions right away in this time of too many symptoms.
I hope you get relief soon!
Your posts are so well-written.
Thanks for sharing your experiences.
Sarah
Thank you Sarah. I do feel a bit better as long as I don’t try to do much. It’s as if I’m walking that tightrope again.
Carol write «In a telephone conference a few weeks later, Dr. Klimas explained that the blood tests revealed I had a very low Natural K cell function (normal = 25%; me = 8%) and a high white blood cell count, indicating that my system was in “anti-viral overdrive”.»
Last time I checked my NK cell number was 11%. I was told it was normal and that they (my ME docs) didn’t find any NK dysfunction in their ME patients. I know science repeatedly have shown low NK numbers in ME patients, but the question is what is low? Can anybody provide my with a reliable source/link/science article with the exact numbers? I would really appreciate it.
May I suggest a non-prescription product called Virastop at Swansons on line. The folks over at an Autism site claim good results. RP
Hi,
You sound a lot like me. My killer cells were only 5% EVB and HHV6 were raging. My killer cells are now above normal. I was so sick after the tilt and the first drug (Atenolol) made me sicker but the Clondine patch worked. My first visit to Miami was when the Kendall clinic opened, I was able to see Dr. K in about a month. My month is May so return each year. This year was my 4th visit but went twice the first year. I wanted to know my protocol face to face after all the testing was in. I am still on Imunovir, Acyclovir was added at the second visit. I take a ton of supplements and thought too many but no, body chewing them up. Yes,. Acyclovir does cause more pain but my uric acid level is okay.
Dr, K is very busy and traveling and I saw Dr. Rey in May, she is a sweetheart too. They have worked together for years. I had a phone consult last week and had some good blood work but still EVB activation. I was told to go to 3 500 mg a day. I do not feel sick anymore but still have pain so upped the LDN, we will see. I am at the point that I could live like this but want it all. I still do not sleep right and have borderline apnea. I hate the CPAP and to sleep have to take it off at times. A new version now, pillows for the nose that adjust, better than anything so far but still do not like it. I sleep less with it and never had a day of waking up feeling like I slept, the way people have told me about. I will be patient. I see my sleep doc here in November.
Hang in there I had a few very rough spots with the antiviral.
I will be going to the new clinic at Nova next May. Dr. Rey said the new lab would be up and running maybe as soon as November. So much is going on there, hope for us all.
It is the special immune testing that they do that shows it all, no doubt in my mind about that.
Thanks Cort for all your up to date reporting.
I hope the increased LDN helps with your pain, and that you find some relief from the sleep problem.
CPAP has worked for me. Still trying to find the right mask. Even with the one that leaks I can get 4-5 hours in. My only worry on your blog is too many drugs that cause long term side effects.hese could bring up a secondary condition.
Hope they work for you.
Carole
Carol, I found that if I use the Resmed Mirage Kidsta mask harness with their Adult mask, the masks will fit better. The Mirage has an adjustable hinge on it for easy adjustments. I prefer a gel mask but they stopped making them.
Another POTsie here. I’m a HyperPOTS person and have more issues with higher bp’s and have high NE levels with standing on top of it all. For those around the 50 age group my doctor is treating many of us with the treatment for MCAS (mast cell activation syndrome). If you have POTS type symptoms and posture doesn’t seem to be the only thing that brings it on —it could be a mast cell dysfunction problem. I always say, it’s hard to tell what is a POTS reaction and what is a MCAS one. And for some odd reason many of us also have EDS along with it. This type of EDS is HEDS or EDS III and the only type that can’t be genetically tested.
I’ve not tested for virus but do have a protozoa and co-infection similar to malaria and also have hypogammaglobulinemia (low IGG levels). Lots of other autoimmune issues (alopecia, vitiligo and have had positive dsDNA levels —-that are normal right now).
If you have MCAS most of us do horrible with beta blockers it will cause a degranulation of the mast cells and then more problems. Clonidine is one of the drugs that is okay to use with MCAS. The treatment for MCAS is an H1 (Claritin, Allegra) and an H2 (Zantac, Pepcid) and usually a mast cell stabilizer like GastroCrom and/or ketotifen. When I added this treatment into my “stuff” – I started having great improvements.
Of course, I also went low-fat, whole food vegan and that also addresses the immune system. (My diet has helped me to nearly reverse Chronic Kidney Disease. From stage 3 to almost stage 1. Yayyyyyy!!!!)
With protozoa, virus and bacteria – they live in a bio-film. This bio-film is like a protective “force field” per se. It is like a plaque that surrounds them and protects them from detection of the immune system and/or antibiotics or things used to destroy them. One thing that I’m doing is taking enzymes a few hours before taking my treatment to break down this bio-film so that what we are trying to destroy can be detected better. My doc also feels this could be playing a part in the blood flow issues we have with POTS. As it adheres to the vein walls and could interfere with blood flow and function of contraction with the veins. I’ve been doing this for about 8 months now and am making great improvements. I’m having so many more good days.
Issie
Issie- I know you mentioned it-but who is your CFID Dr? Sounds like they know their stuff. They would have to as you are the most well informed blogger I know.
Interesting about the Clariten and the Pepcid. Does the Claritin work with the Zantac also? I can only take half of a Claritin. And only for a few days. Nasacort works well with it.
Best-
Carole
Carol,
Thanks for the nice complement – but, there are many that know way more than I do. But, I do enjoy research and trying to figure things out. I’ve looked into so many different things out of necessity. Either I or my family has a lot of not so good things – we are trying to sort out. I’ve had a few friends that I’ve enjoyed researching with and talking over what we learn, drawing conclusions and doing experiments to see what the results are. Some things have turned out very good and others something to mark off the list as “tried that, don’t need to try that again”. 🙂 When you have a complex, complicated and little known illness X3 (or more) —you search pretty diligently–until you get it figured out and get a game plan to give you more quality of life. (I call it searching for the “purple bandaid”. Purple is supposed to be a healing color and I like it. LOL!
As for my doctors. I have a whole bunch of them. I had gone to Mayo in AZ to get most of my DX’s. Over 3 different visits (which were weeks long) I saw about 17 doctors. Then when I moved to AZ – I got a lot of doctors outside of Mayo. So, I’ve had lots of testing and lots of very intelligent doctors trying to sort things out for me. Of course, I study and research a lot myself and find it very interesting how the body works. And the connections that seem to play a part in what we are all dealing with. I was also on another forum for almost 4 years and lots of us did some pretty in depth research and most of us are pretty opinionated as to what we feel are our issues. (I don’t agree with some of the treatments that are being used for POTS people. I think some of the things are making us worse and long term could cause some serious consequences.) That being said, at one time or another – I’ve tried almost everything suggested. Many of the things that I disagree with are because of the research I’ve done on the effects to the body – with long term treatment and the response that either I’ve had or others. I also think that we have compensatory responses that our body is trying to correct itself and if we mask that or stop it —-we may long term be creating worse problems.
The doctors that I’m primarily working with right now is my neurologist who is also a POTS specialist at Mayo, AZ named Dr. Brent Goodman. He is the one who is treating us for MCAS. He is working with an immunologist from Mayo who recently was transferred in – named Dr. Rank. (I’ve not met him.) My Lyme/protozoa doc. is Dr. Stephen Fry in Scottsdale, AZ. He is mostly directing the treatment of the pathogens with diet and low dose antibiotics and anti-malarial herbs. This treatment address immune system dysfunction. (Low dose antibiotics and these anti-malarial herbs also affect the immune system.)
I do a lot of alternative treatments that I have figured out for myself over the years. I’m also working on methylation mutations that I found out from 23&me testing. (My diet also addresses these mutations.)
You can take whatever combination of those you tolerate. As long as there is an H1 and an H2. I personally have found that Allegra and Zantac (only 1/2) are my best ones. Claritin caused more issues with brain function for me and if I take more of the H2 it makes my stomach hurt.
GastroCrom and ketotifen are both RX’s. Ketotifen has to be ordered from Canada – as it’s not available here in the States. GastroCrom is unreal expensive —thankfully, I have insurance —a good one. I haven’t tried the ketotifen – but the GastroCrom makes a huge difference for me. There is also NasalCrom that is over the counter and I’ve only seen it at WalMart. It’s the same med as GastroCrom only very, very low dose. That has also helped some when there are nasal issues. There are also allergy eye drops that can be gotten over the counter with this in it too. Some are making a cream out of a bottle of NasalCrom and a dye free, fragrance free cream. Very good for rashes associated with MCAS. You have to put a little bit of a carrier oil in with it.
If you have MCAS we have to take these things daily. I usually only use the H1 and H2 once a day –but, sometimes have to use it more. And the mast cell stabilizer I use 2-3 times a day. With time, the tiredness and sleepiness gets better with the allergy meds. Some also use Benadryl as their H1 –but, that gives me tremors. So, I reserve that for a really bad attack and keep liquid on hand for that. (I also have an epi pen for just in case.)
Some also find turmeric and quercetin to help with MCAS problems. These help with inflammation and help with pain also. There are many meds that we are not supposed to use with MCAS – as they could cause degranulation of the mast cells and then we’re sicker.
There are some really good mast cell sites that you can visit if you’re interested in learning more about that. I can give you some links.
Okay, hope this answered some of your questions. This is getting long.
Issie
Izzie- Where do you get the Mast cell stabilizer? Gastro Crom/or Ketotifen?I it prescription?
I am on a whole food diet and Gluten free.Also low fat.
Thanks so much- always look forward to your brain tips.
Carole
Good for you on the diet. That’s been one of my best helps. It takes a little while to tell a difference. Just make sure you are getting enough plant protein. I keep up with my foods on a site that is free and it breaks out all the nutrition that you have in your foods and you can tell if you are getting enough vitamins, minerals, protein and keep up with your fat. It’s called SparkPeople.
I’m not to use magnesium either – as this makes the bio-film even stronger. It will make it harder for you to break it down to get rid of the things you want to get rid of. I was very skeptical of this when I was first told to stop using it —as I thought it helped my sleep and muscle pains. But, when I started having more veggies and fruits and eliminated animal products —lots of things got better as it will also eliminate things that cause a lot of the inflammation. The doctor also thinks that arginine in wheat may be a strengthener to the bio-film. He has found that a high fat diet makes the protozoa very happy. That’s why the low-fat diet. Veggies also have fat in them. So, you have to be conscious of that.
Here are some articles written on this protozoa and the bio-films. My doc has papers being peer reviewed and expects to be published later this year. (This has been a big debate amongst some. But, all I can say is it seems to be working for me. And it’s something I can do for myself. I’m having some very positive results.)
http://www.iadvocatehealth.org/protozoal_infection0.aspx#.aspx
http://lookingatlyme.blogspot.com/2012/07/protomyxzoa-rheumatica-implicated-in.html
http://www.forumforpages.com/facebook/ccsvi-in-new-zealand/hiding-in-plain-sight-the-stealth-disease-protozoan-pathogen/3561941001/0
Issie
Hi Carole,
I was going to tell you about EDS and also Mast Cell problems and histamine intolerance but Issie has already posted about it. Please heed this information and do some research. You can start with http://www.prettyill.com.
Love and Blessings,
Hope
I took Imunovir at one point. Lightened up my bank account but did not improve my health. Apparently only works for some people.
Carol,
Please write me privately.
This was posted on Carol’s blog page
You might want to read Matt Stone’s book Eat for Heat. It has tidbits of real insight, I disagree with other things he says, but am thankful I read it. I have had CFS for almost 25 years although they did not know what to call it then. His book enlightened me to what I am eating and the salt/electrolyte imbalance. Before, I was over hydrating and taxing my adrenals even more. Now, I use sea salt on everything, even in my coffee. I also make myself 2 24 oz bottles of homemade gatorade a day which I drink throughout the day. I am also conscious about always having protein and fat at every meal and snack. Recipe for drink follows. Pay attention to whether you feel hot or cold and how often you need to urinate. Cold is bad and clear urine means you need to eat something salty and fatty. Read the book and the test yourself.
I might also point out that i also have the orthostatic hypotension and low blood volume. My success with the antivirals has been unhelpful. For the last 5 years I have been gluten free and eat a low carb, high healthy fat, moderate to high protein diet. I eat mostly Paleo and nothing processed. I don’t eat out much either. I mention the food because it made a big difference in my pain and energy levels. I also use herbal supplements for sleep, contact me for more details.
Everyday is a challenge. Good luck on your path.
Maria
Use glass or BPA free 24 oz bottles with the following in each bottle
1/2 tsp Vit C powder
5 g scoop on D-ribose powder ( most important)
5 g scoop Natural Calm magnesium powder ( lemon is my fav)
1/8-1/4 tsp Celtic Sea Salt (depending on other salt intake)
20 drops Ionic Research Trace Minerals
12-15 drops liquid stevia to taste (Kal is my favorite)
Thanks for the recipe and I’ll look into that book. Glad your diet has helped you improve.
It will be interesting to see how the “Neuro-Immune” Institute does going forward. The transition from U. of Miami to Nova was dismal. It will be interesting to see how Klimas is able to do at lesser known institution. I suspect raising money will be more difficult than for Enlander in NYC and Kogelnik & Montoya in the Silicon Valley. I have yet to see Dr. Rey but I have to say the handover by Klimas was atrocious – if not bordering on negligent.
Went with my husband, a long-time CFS sufferer, to see Dr. Rey in March, and had follow-up in early June. Since that time we’ve been in a perpetual struggle to get in touch with anyone in the office at all. I spent most of the summer trying to get them to respond to our request for a bill with insurance codes, and — far more discouraging — trying to get them to fax a request for Immunovir to the pharmacy in Canada. We’ve been told Dr. Rey can no longer communicate over e-mail, and the answering service is almost impenetrably hard to get past.I kept track of my time, and I spent a total of six hours on hold with the Nova Southeastern answering service. I got a hold of the office (often after being on hold for over 30 minutes) on three different occasions, was told, oh sure, we sent that, and then it would take me weeks to get anyone in the office again to explain, no, you didn’t send anything.
It was August before we actually got the order for Immunovir along with directions for dosage. Husband is giving it a try, but we are both terrified to be trying a new drug when we know we have no way of getting a hold of the one doctor who actually prescribed it if something bad happens (and bad things often happen to my husband, where meds are concerned). Are we doing something wrong? So many people have great things to say about Drs Rey and Klimas, but I’m not sure it’s even safe to see them, at this point, if communication on very basic issues are this hard.
No I don’t think we’re doing anything wrong. I just think Klimas et al handled the transfer extremely poorly. Not going to NSU until they get their act straightened out might be a good idea.
I too have had some issues with the Institute’s office staff. But I find that Dr. Rey is efficient and responsive, and that the communication problems are decreasing. I hope that continues. I agree with your point though — what good is it if you’re taking these meds and can’t contact them with a problem?
Carol
Do you take the Famvir and low dose Naltrexone at the same time?
Yes, now I am. I started with 1/2 Famvir and 1/3 capsule of LDN. Will increase Famvir after 2 weeks. Don’t know if I’ll increase LDN because of previous sleep problems with it.
Is it Ok to take LDN and valcyclovir at the same time?
How on Earth does a CFS patient get an appt with them? I-M-P-O-S-S-I-B-L-E
I was just told by their office that they haven’t taken any new patients since last April and they are booked until next March. So, I guess the only way anyone can get an appt with them is if they know someone who knows someone who knows the Drs…so frustrating.
I feel your pain. I can’t get in, either. I have called at least 5 times. Very, very frustrating.
I would very much like to hear results from those who have taken Imunovir. I have a script which I have not filled because 1) I took Inosine for two years with no improvement in my NK cells nor in how I functioned and 2) the cost. Many thanks for any info.
I agree phone communication with Dr. Rey and her staff is a trial. It takes forever for the operators to come on while one is forced to listen to the Nova promotions. Misinformation from those who answer has not improved. They do not seem to forward messages to the office. I think Dr. Rey is also frustrated with this.
Getting results of Quest bloodwork is supposed to be automatic after a couple of weeks, but does not happen unless you request it from Dr. Rey directly. They seem overwhelmed.
Wishing you better, ARLYN
To be frank,all this imunovir talk is a waste of time, energy and money. At least anecdotally the results are poor. I am an Australian and love the USA but I am afraid it’s in places outside the USA that the progress is being made
I saw Dr Klimas last January 2013. It was a good experience in many ways, but like lots of others, I have had major problems communicating with them since returning to California. Am currently trying to get paperwork from them for some lab tests that are supposed to happen soon. After numerous phone calls, no luck yet…
I have seen Dr. Klimas through the VA for many years with some success.
I have tried the Naltrexone with mild results. I seem to do better with a regimented sleep/wake routine, exercise, supplements such as ubiquinal, and omega-3 and multivitamins to include enough b6 and B12, less caffeine, atenolol at night.
Previously I had used a OTC exercise supplement she recommend which gave me a real boost of energy, and helped the exercise and strength levels, which “increased ATP production”.. This seemed to work the best with the above combinations. I had to use a low dose, however due to insomnia
Thanks Duanne,
Can you say what exercise supplement she recommended? I’d love to try it.
How do I get an appointment
I’m convinced I have the cfs
It’s been 3 months I’ve had every test no one knows
What is wrong with me.
Worried and scared too!
I’m a 54 year old male
Look up Dr. Klimas clinic at Nova Southeastern University in Miami I think it is. A google search for Dr Klimas should be good enough. Good luck!
I just tried to book an appointment with Dr. Klimas’ clinic, based on the good things I heard here and elsewhere. Apparently she is not accepting patients, and neither is anyone on her team…at least that was what the representative at NOVA told me. Has any one else recently had success in getting an appointment with her?
I have been seeing Dr. Rey since last February. Four visits now in total. I have gone from about 25% of normal energy to 65% in that amount of time after having CFS for 12 years. I saw her two weeks ago and she said they are hiring another doctor who should be starting within the month, and that will dramatically decrease her patient load and increase the total amount of patients they can see. I get ahold of her by email all the time. My sister was just able to get an appt. for March. For the record, my nk cell function is 0%/ undetectable both times it has been tested, and I have HHV6. Imunovir and low dose naltrexone have helped like nothing else.
Great news Lauren…Thanks for letting us know…Continued good luck to you!
Thank you. Of course I completely empathize with the blogger and other commenters, it has not been easy and still isn’t. It was hard to reach someone at the office at first for my initial appointment, and even though I have more energy now than I have had in years, the imunovir makes me feel quite flu-ish and I have bad hot sweats from it constantly. But it gets a little better every week, so I would say I recommend trying a treatment maybe more than once even if it causes side effects, because what seems bearable with no energy can sometimes get easier to deal with once you have more energy. I wish everyone the best:)
I have been seeing Dr. Rey since last February. Four visits now in total. I have gone from about 25% of normal energy to 65% in that amount of time after having CFS for 12 years. I saw her two weeks ago and she said they are hiring another doctor who should be starting within the month, and that will dramatically increase the total amount of patients they can see. I get ahold of her by email often. My sis was just able to get an appt. for March. my nk cell function is 0%/ undetectable both times it has been tested, and I have HHV6. Imunovir and low dose naltrexone have helped like nothing else.
Would you be able to share with me how to schedule an appointment? I have been begging to be seen for months and I have not been able to make an appointment.
Any contact information will be most appreciated. I am extremely fatigued and about to loose my sanity with this condition. There do not seem to be a lot of medical options in Miami.
Very grateful for any help/info.
When your physician review program hopefully it will point to other physicians in the area. I’m sure they’re out there.
I’ve never seen Dr Klimas but began seeing Dr Rey when they were still at U. Miami after I was in one of Dr Klimas’ experiments. I tried Inosine before going further to the prescription version since I have trouble with nearly every supplement known to mankind. I couldn’t take it, nor could I tolerate low dose naltrazone or any antivirals in the clyvir family.
What helped me was the trio of supplements that she started me on….DHEA, sublingual B12, and CoQ10 100 mgs twice a day. My Killer Cells went from almost nonexistent to normal, based on their very good immunological testing. Their ACTIVITY was slower and just reached the low end of normal at my last testing. My HHV6 titer is still sky high but I can’t take anything to bring that down. I had seen an immunologist in Hollywood, FL, who ran a center for this illness, up until his death a few years before I got in with Dr Rey. He tested the virals, too, and found that they seemed to run a natural up and down course so I’m not too worried. I feel it’ll go back down again.
Dr Rey gave me the name of a book to read. A lot was information about the illness as well as a section on logging activities and pacing. I’ve since joined Bruce Campbell’s online course and that helps me immensely. No, I’m not out of the house or well, but I’m doing better combining the things i wrote about, a few other supplements, good diet, and a low level of exercise and stretching that I can tolerate.
And yes, to get in touch with them is almost impossible. That’s my only complaint.
Dear Mrs Campbell,
can you give me the title od the book Doctor Rey tells you ?
And how help you the exercise you mention ?
Thank you for your kind reply.
Anna