Got an health issue you’d like ten of the most experienced ME/CFS/FM doctors on the planet to take a jab at? Here’s your chance.
Once a month we will ask the community for questions (make them tough ones!) regarding a personal health issue they would like answered.
I or the community will pick the Question of the Month and then we’ll give it to our ten person ME/CFS/FM expert physician panel to chew on.
Each practitioner will be working alone, and will be given the opportunity to ask further questions of the patient. They’ll be given about two weeks to respond. The answers will be posted on a blog (sans the questioners name and email address) once a month.
We’ll put the questions that don’t get answered on separate web page (sans email address, name and phone #).
Simply fill out the questionnaire below and it will be included in the pool of questions for that months session.
ME/CFS/FM Cases Answered
Find out more about the doctors by clicking on the links below. More doctors may join in from time to time. If you have a doctor who might want to participate please let me know. (Practitioners with different skill sets (naturopaths, herbalists, etc.) would be particularly welcome.)
- Dr. Lucinda Bateman (Salt Lake City, Utah)
- Dr. Joesph Garabedian (King of Prussia, Pa)
- Dr. David Kaufman (Mountain View, California)
- Dr. Kent Holtorf (Torrance, Ca.)
- Dr. Andreas Kogelnik (Mountain View, Ca.)
- Dr. Charles Lapp (Charlotte, North Carolina)
- Dr. Martin Lerner (Beverly Hills, Michigan)
- Dr. Sarah Myhill (Wales)
- Dr. Jacob Teitelbaum (Hawaii)
- Dr. Alan Weiss (Annapolis, Md.)
ME/CFS Experts Panel
Please Support Health Rising!
Congrats on getting the panel members on board for this endeavor Cort. What a great opportunity to have our questions reviewed by so many experts at the same time! Health Rising is a perfect venue for bringing these brilliant minds together to address our individual questions. I love the concept and look forward to information we’ll all likely benefit from, whether it’s in answer to our own question or that of another patient.
Thanks Pat. It was great so many doctors signed on. I’m looking forward to it.
I have experienced chronic fatigue and fibromyalgia for approximately 10 yrs. and following the latest research and treatments helps me keep more positive. It is most discouraging if you believe you have explored every option and have no recourse.
Indeed, You’re certainly not alone Sharon. I hope the Experts can provide some more options and new slants on treatment.
I am open to all possibilities as, again, without new avenues to pursue and try, a person might feel “locked in” and rather hopeless. I am grateful for this site and any new insights and research that I may glean from it. Thank-you.
Cort, do you think treatment with LDN is effective in any way?
I actually don’t even have to think about it. I know it can be very helpful for some people. Dr. Klimas is now using it as her first choice for pain and it may have immune modulating factors as well.
If you try it start off low and work your way up.
I am working my way up in dose, thank you. I also read recently that anti-inflammatories such as Celebrex may be effective. Is there any thought about this?
What a wonderful and creative addition to the already exceptional panoply of Health Rising offerings. While this is hardly news for anyone within the community, I’ll happily share that this is far and away the superior contributor to patient information out there. If there was a journalistic Pulitzer for ME/CFS, we all know where that award would go year after year!
Thanks again for the amazing work!
I’m blushing! But thanks….More is on the way 🙂
Wow, the work you do is impressive Cort! I live in South Africa and there aren’t any specialist ME practitioners. In fact this is such a major issue that we have contemplated emigrating. I have had ME for 8 years and after getting better have severely relapsed. I’ve been to yet another doctor for general blood tests and according to tests, apart from low iron levels everything is fine. I am very keen on sending blood works over to Dr Myhill as certain tests cannot be done in SA but my GP thinks its a waste of money. I really rely on information such as provided by you for guidance and hope. Thanks for all the wonderful work you do!
ok Cort… i loaded you up with questions… clean them up as you see fit… I hope at some time they get chosen… THANKS!!!
Cool – thanks 🙂
I think a legitimate question is, does Janie Bowthorpes book “Stop The Thyroid Madness”, actually treating CFS with Armor thyroid medicine?
And, apparently with some success in many cases. The primary marker is low body temperature, along with the classic CFS symptoms. Are you aware? RP
I see under comments that you have another South African hypnotised by your site. South Africans are starved for medical support, as I think you know. Furthermore, I do not know anyone else in SA who has ME. What is your protocol regarding allowing me to contact “Kim”?
This is a good idea – there is rarely a chance for us patients to hear from the few doctors who are actually trying to help. I submitted a question so maybe there is something useful in that. I feel fortunate that I have found a few things that enable me to get on with my life rather than wishing things were different.
I think you are doing amazing work, it is needed, and I could not do it, so I guess I better go back up the page and send you some money.
hey cort, do you know why LDN works only for a couple months then stops? i felt about 70% better when i started it for M.E./CFS but then it stopped working and i was back at square one. feeling AWFUL everyday! any idea why?
Are there any doctors in Massachusetts that specialize in EBV and CFS?
I have been ill for over 25 years now and throughout that whole time have not really received much treatment.
Perhaps part of it has been my responsibility because in the beginning all that was offered to me were off label use drugs, some I tried- some I did not. Some of the ones I tried helped some symptoms but very little. The standard sleeping pills, very low dose Elavil to help with pain levels ( made me sooo fat). Provigil and Neurontin to help with my energy; they did nothing. I am not sleepy tired I am weak with no physical energy what-so-ever. My point….
When I read the Canadian Case Definition of M.E. I fit it scarily. But…
(1)I am left feeling: were all the tests run that should/could have been run? Do I really have M.E. or is it really something else?
(2)I read about all these other treatments that patients are trying the antiviral drugs the P.O.T.S. medications and wonder if I need to be on this kind of treatment.
The neurologist that I see made has made of diagnosis of CFS or M.E. and P.O.T.S with hyperventilation. Another doctor is treating my low thyroid and now Adrenal Insufficiency with Hydrocortisone. Both physicians appear to agree with this diagnosis but then that is where things just stops. I go home after an appointment with no options. I just feel like this is as good as it is ever going to get and since there isn’t a proven treatment I am left in limbo land.
(3) I don’t want to be on something that is going to hurt me….but at this point I have no life. I am worse now then ever before. I seldom am able to leave the house and I sit all the live long day unable to do even the most basic of daily activities. These other treatments that I have read other people are trying; have not been miracle cures but some of the patients say they are doing better….???? Are they???
I just want my life back and some kind of assurance that I am being treated properly and every treatment options has been explored, at least been discussed so I can decide if I want to try it. If there is a test that can be run that points in the right direction for treatment then: At this point I don’t feel I have anything to lose.
I have an appt. for an EBV against viral capsid and early antigen and also an HHV-6
I just started the hydrocortisone for the adrenal insuffiency.
Any suggestions from anyone would be gratefully appreciated.
Hi Cathy. Have you made any progress with your situation since 2014? My situation is like yours. I do benefit from hydrocortisone–it makes breathing easier and makes the heart rate normal again. Making the breath easier does not mean that my normal breath has returned. It just makes it easier.
Yes I have EBV–but the medical community seems divided on what that actually means and also what to do with it.
What have you found these last many years? I am only one year into this and I am not finding help though this. I live in the PNW region of the States.
Your life as you describe it — spending your days mostly sitting, unable to do the most basic activities — is exactly how I have lived my life for years.
Like you, I’ve had tests, been on different medications and so on, but I truly have never felt well since I got really ill in 2001 with who knows what, running a fever of about 105 F for 4 days, and then never recovered.
Prior to that, in the late 1990s, there were hours at a time once or twice a month where I had a lot of pain and a feeling of heaviness in my arms and neck, as well as feeling completely depleted. I had some other strange symptoms, but they eventually passed.
It seems to me that there is likely only one cure — Ampligen — and since it will probably never be approved in my lifetime, I just remain the same day after day.
Friends and family members abandoned me, calling me lazy and crazy, and I truly have no quality of life. I don’t expect to ever have any quality of life at this point. I used to be hopeful, making plans to go places and do things I enjoy, but this year I finally faced the fact that I probably will never get well.
I don’t think this illness will be taken seriously until members of Congress and/or their family members wind up suffering from it.
I’m sorry to offer such a negative response. Everyone’s different. In 2004, I was on medications that for a couple of years made me feel less sick — not well, but not as sick as I had been — so I got a job and tried to get off disability. One of my doctors said I shouldn’t have done that and he was right because I got worse. Much worse.
I guess what keeps me going is the hope that I will have another period of not feeling as badly as I feel every day now, and that it might last for at least a few months. It’s getting harder for me to remember who I was before CFS/fibromyalgia.
Thank you for the response, I feel so very sad for. It is a long time to be unwell isn’t it? The other day I was thinking that I have been sick longer then I have been well. I became sick when I was 22 and I am now 48! Still waiting to feel better, with no answer just really sucks.
Like you, there have been times where I felt a little stronger and made several attempts to return to work also with miserable results. I am fortunate that I still have a support husband and a roof over my head. Mostly everyone else have faded away and are gone from sight but if I were to suddenly become well by some miracle I am sure I would reconnect with everyone. People go on with their lives and we are left behind for the most part.
I just have this dreaded feeling that something is being missed. Being a person who always thinks there is a way through or around or over or under; this has been most difficult for me. I am going to be really, really angry if I find out I had something else sometime down the road that could have been treated and given me back my life.
I agree with you…direr situations are never really understood until they hit hard at home! Until then, I just don’t know. We are for certain farther then we have been…but how much farther do we need to go.???
Take care and best wishes to you.
Thank you so much for your reply. Like you, I have always believed that there must be a way through, around, over or under any obstacle and/or challenge, because I was fairly successful at overcoming them for a lot of my life.
I have always been very resourceful, and I hate that there are few resources to help us and/or that the MDs who are experts in CFIDS are few and far between and not anywhere near me in Arizona.
For several years, I would search for treatments online every few months, but in the past few years, I only search once a year. Right now, I am taking two antivirals — Valcyte and Valtrex — to treat the viruses I have in my system, each of which has an extremely high IgG titer. I’ve got EBV, CMV, HHV6, Mycoplasma pneumoniae, and Valley Fever, among others.
The link to the antiviral treatment information is here: http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf
Like you, I have been feeling for years that something more could be done to help us. My GP thinks I have M.S. because I have so many of the same symptoms, and one thing that really stands out to me is how heavy and weak my legs have become over time. I also have gotten much more clumsy over the years, which actually has resulted in my breaking a major bone in my body in a fall and having to undergo two surgeries.
My mother has M.S. and two of my cousins who died in their 50s (both female) had M.S., but MRIs show no plaques on my brain, so no doctor can diagnose me with it.
I’ve heard of people with CFIDS who have improved with AIDS and M.S. medications, but no doctor out here will prescribe these without a diagnosis of either or both conditions.
You’re lucky you have a husband who is supportive. I have no one, as do so many of us with CFIDS, and I really want to begin a non-profit foundation where people with CFIDS can stay in residential homes and receive care. I don’t know how I’d do it, but I’d start with my house, which is paid for in full.
Best of luck to you.
First – thank you Cort for this very informative site and for gaining the support of some very experienced practitioners.
Dear Kathy and Cathy – I am in a similar situation to you. I am now 61 and was diagnosed with ME/CFS at the age of 35. For many years I was improved – but the ME/CFS would flare up – I could work as long as I didn’t socialise and rested in the evenings. It was always a struggle though. My health began to deteriorate when I was about 50 – I think with the menopause because period times and the days before them were always very difficult. About seven or eight years ago I had a full hysterectomy hoping that this would help – it made things even worse. I have not worked now for four years.
The practitioners and experts agree there is a real problem with the HPA axis yet our endocrinologists don’t seem very well up on CFS. I too have sub optimum cortisol levels and my thyroid is on the lower range of normal at 13 with 150 thyroxin. I was on 175 for about a year and weight started to go down etc – but we moved house and I had very bad heart palpitations/breathlessness after exertion needed for the move. The hospital doctors cut my thyroxin to 150 – they said it was too high! Cort – I really feel that levothyroxine is not addressing the thyroid problems for many people but in the UK we are unable to get Armour – yet many Americans improve on Armour or on T3 supplements. It is hard to get a GP to even test for free T3 in this country – something need to be done. Also I have chronic inflammation especially in my spine and on my skin. My skin on my face and neck is so dry and is red and inflamed. A GP at my practice put me on Naproxen but they certainly didn’t help with the chronic inflammation. I felt that they contributed to the racing heart. As far as I know there is no willingness to try some of the drugs that help people with Lupus, RA and MS. Yet we know there IS chronic inflammation. I have presented my GP with the International Consensus Primer On Myalgic Encephalomyelitis Medical Practitioners. He hadn’t seen it – and I doubt that many others have. I am not sure that under graduates even have ME/CFS included in their syllabus! The international consensus panel insist on the ME title to differentiate it form other CFs groups, which is very sensible. It is a very comforting document and is comprehensive as the symptoms of ME are so systemic. I have developed dyslexia – or at least get the letters of words mixed up – this is cited in the document, which is a comfort as this is quite distressing for me (I earned my living writing funding bids and reports and writing has always been a strength.)Fortunately I can keep correcting this on the computer! I have also started putting milk in the cupboards instead of the fridge, taking two days thyroxin on the same day despite having a pill box marked with the days – because some days I can’t remember what day it is. There is no way you would be offered a brain scan though it would be interesting to see what is happening.
I have read Dr Teitelbaum’s book ‘from fatigue to fantastic’ and have implemented much of the nutritional support – without much difference. I am unable to maintain these protocols as they are expensive – I have even tried AHCC -Japanese Mushroom Extract – which is very expensive and hasn’t really helped (I read about this on the internet) I feel Dr Teitelbaum’s chapter on hormones is particularly valuable. I am convinced that estriol would help me but it is not available in this country – unlike in America. I have seen a supplement for fibromyalgia which includes many vitamins and minerals and is reported to help but will it?
I feel there should be an international meeting for endocrinologists and virologists/rheumatologists and that in the UK these practitioners should be given licence to try treatments that will IMPROVE symptoms of ME – otherwise we are still years away I fear and some of us may not have years left! Perhaps this is something the ME Association could lobby? In the meantime ensuring every GP and consultant has the International Primer would be a major step forward!
In the meantime – things that I have tried which are helpful:
*cutting out wheat, gluten and lactose – particularly gluten;
*a high protein and low carb diet (although during crashes I crave sweet things and the other day ate 5 spoonfuls of manuka honey) but eating protein at every meal helps and I have natural yogurt with live bacteria.
* Also small meals at frequent intervals are helpful in keeping sugar levels more constant – gluten free oat cakes with cottage cheese or low fat hummus – mid morning, mid afternoon and before bed.
*acupuncture and acupressure massage on the spine – I have an excellent Chinese Practitioner and it really helps with back and neck pain as well as overall relaxation
* Alpha Stim m – expensive but helps my back and neck pain in between acupuncture sessions. It needs to be on the lowest frequency with low current set at 0.5 or 1. Or at least to start with. This is available on a rent to buy scheme so you can try it but you have to pay four months minimum.
Still despite these aids I have very limited energy and am housebound most days – particularly after exerting myself e. g. cleaning – even though I pace myself and do little bits at a time.
I have been re referred to Hull Royal Infirmary endocrinology department – I will let you know how I get on. I am also seeing a herbalist who may be able to supply bio identical hormones (estriol and natural progesterone)
Kudos to the Drs that have volunteered to answers questions, as well as to you Cort! Looking forward to see where this goes.
What an awesome panel of experts.
You rock, Cort.