Theory of CFS/ME and Which Dr to see next?

[JBB]

Hi everyone,

This is my first post here although I have been reading information from this wonderful forum for what seems like several years now.

I wanted to hear your ideas on which Drs might be best for people in my particular situation.

I have been seeing Dr Myhill in the UK for about 18 months and she is clearly very knowledgeable, kind (extremely actually) and obviously helpful for many people she treats. Her protocol is much like Dr Teitlebahm's but has not helped me yet. I feel it is time to move on.

Not only this I am gradually developing my own understanding of CFS / ME and my own theories with what is wrong with me, and maybe others in the same subset. I think I have strong evidence that for me (and I suspect for many others) that the immune system and viruses play a major role and believe this will be the unlocking factor for me if there is to be one. Despite this I have not had any thorough immune system tests so cannot be sure. This is further supported by Dr Lipkin's recent study which highlights certain immune abnormalities. I am very interested to see what the end result of this study will be. But I guess immune dysfunction is nothing new, the question is how to fix it...so here goes my theory.

1. Stress suppresses TH1 immune system (this may be viral, emotional, work related etc). I gather TH1 immune system is for intro-cellular viral infections. This ties in with what Dr Chia seems to have found in 85% of his patients...viruses which do not destroy the cell but happily go on living in it.
2. The suppressed TH1 immune system allows viruses to jump on which using clever methods (maybe mimicking interleukin's) further suppress the immune system. I do not believe it is any one individual virus we are looking for but probably a combination of many different ones keeping our immune system at bay and all helping each other by suppressing different areas.
3. This explains why so many different treatments work to some degree. i.e anti virals (valtrex / valcyte) may improve someone somewhat as they take a viral load off the immune system. Dr Myhills protocol effectively gives more energy to the mitochondria so the immune system has more to fight with (in my theory!).

Anyway, having deduced that this is probably where my problem lies I am wondering who I should go to see. Everyone seems to hold Dr De Meirlier in high esteem from what I can gather, but if it is going to cost me £1000 per month to have nexivar + other immune modulating drugs I'm not sure I can afford to do that. Especially if this is a "for life" treatment. His office claims a 70% response to his treatment. Dr Chia seems like a cheaper option by using equilibrant, but I am in the UK. Does he do remote correspondence? He said his success rate with Equilibrant is 52%, but I'm assuming he does other treatments too. I am self trialing the equilibrant anyway going from experiences people have had on this forum. Anyone know if that is his success rate overall? Also I can't find a website for him, is there an email I can contact Dr Chia on to book appointments?

So, what would be your recommendations? Are there any other Drs who focus on the immune system and anti-virus treatment who are held in high esteem and would not cost me the world? I am based of course in the UK but can travel...America seems like an expensive trip though.

Many thanks in advance for any advice.

J

 

[Seven7]

I see Dr Rey in Mia Fl. At Klimas group. I am on antiviral, LDN, immune modulator (imunovir) also OI treatment. Sleep Meds.

 

[maryb]

@JBB
I agree with what you say about Dr my-hill - a nicer, caring doctor you will not find anywhere in the world. Of course there are limitations on her practice - she does work in the UK after all - I can't imagine the witchhunt if she started prescribing a/virals here, even after extensive viral testing.
Her theory is if you can get the body to 51% well it will do the rest by itself...... getting there is hard........

Even de-merleir doesn't jump into a/virals though - he looks for co-infections first, hence the mega bucks -I don't know if anyone on Pr has been prescribed a/virals by him??

Do you think yours is a virus?? some people take valtrex/famvir/acyclovir and immunovir and equilibriant (generic) but of course you really need blood tests first otherwise its punching in the dark. Would Dr M do the tests and then you would have a clearer picture?? They are expensive though.

 

[SOC]

So, what would be your recommendations? Are there any other Drs who focus on the immune system and anti-virus treatment who are held in high esteem and would not cost me the world? I am based of course in the UK but can travel...America seems like an expensive trip though.

Dr Klimas and her associate Dr Rey are immunologists so their focus is on immune system and pathogen treatments, although they treat other aspects of ME/CFS as well. They are currently training new docs who I expect to have the same approach. I don't know when those docs will be taking patients, though.

If you made the expensive trip to the US and got antiviral prescriptions, could you get them filled through your UK health program? If not, the cost of the antivirals out of pocket could be prohibitive. Also, remember that the cost to see a doc in the US is much higher than most Europeans are accustomed to, so take that into consideration when you decide which doc to see.

None of the docs I know will give antivirals without tests and a symptom set showing active infections. However, the interpretation of tests with regard to what indicates an active infection varies.

My guess is that your best treatment for the money is likely to come from KDM simply because you don't have to travel as far and medical costs in Belgium are much less than those in the US.

 

[JBB]

Thank you all so much for your input. It is very much appreciated.

@maryb Indeed, it is very sad that she has been so harassed by the GMC. Yes, I am fairly certain of chronic viral infection (chronic cough, viral + stress onset, cough has come and gone ever since - 4 years, selenium / zinc / magnesium low despite taking these long term where other elements at a better level) but I agree it wouldn't be a bad idea to get some tests done. The main problem is I'm not sure which ones!? I probably could get the viral tests done through Dr M...I'm not sure which these are, HH6, EBV are the ones I have heard about but I don't think it's an area she particularly focuses on. Also is it not possible that there are viral infections which go undetected...such as Dr Chia and his findings on enteroviruses? Hmmm that's interesting about KDM, it's not so much the up front cost of having the tests done but the ongoing £500+ per month for immune modulators etc that would do my bank account in. Someone did tell me you can get some things from India cheaper so maybe that is an option. "some people take valtrex/famvir/acyclovir and immunovir and equilibriant" I suppose that is part of the problem. I'm not sure which tests to take (don't actually know of any specific ones I should do) and therefore not sure about which anti virals to take.

Which viral / immunological tests should one have done if immune / viral aspects are suspected?

@SOC That's interesting about Dr Klimas and Dr Rey. I didn't know that and do feel that my best bet would be to work with someone who focuses on pathogen / immune treatment. I will have to look into costs but it looks pretty expensive when you don't have insurance dam it! I'm guessing this is their site http://www.cfsclinic.com/contact.html
I doubt that the NHS (they are utterly useless when it comes to CFS) will fulfill any viral prescriptions whether I have it documented or not but maybe I could really fight for it. Other possibility is buying from India...not that I particularly like the idea but if I have no other choice.

Within Europe is there anyone other than KDM who looks at the immune system / pathogens or is he the guy to see?

What are the typical on going costs of treatment from Dr Klimas / Dr Rey including drugs etc? I imagine upwards of $1000 per month.

@Inester7 Thanks Inester7, sorry for my many questions but if you wouldn't mind!...What antiviral are you on?...and what virus is it treating for? Also what is the treatment for OI? Finally have you found them helpful in improving your condition?

Any other docs that anyone thinks are specialized in this area please let me know.

Many thanks,

J

 

[Seven7]

@Inester7 Thanks Inester7, sorry for my many questions but if you wouldn't mind!...What antiviral are you on?...and what virus is it treating for? Also what is the treatment for OI? Finally have you found them helpful in improving your condition?
J

Antiviral: I used equillibrant (which you can buy online w/o prescription) this took care of cosaxie and Parvo (I have Parvo virus reactivated since I stopped the equillibrant). I use Famciclovir for HH6V and this took care of the EBV.

Currently I am still with HH6 and Parvo reactivated the others are suppressed. I work on my inmune system trying to raise NK cell is crucial.

OI: I am on florinef and Midodrine. I got the fasted recovery from treating OI.
Finally have you found them helpful in improving your condition?
I went from bed to working full time. So I am happy, Not cured but stable.

 

[snowathlete]

@JBB - 4ME (nexavir/kutapresin) costs 90 EUROS for ten vials, so about 270 EUROS a month. This makes up the bulk of my treatment cost. How vital it is to the treatment protocol overall I don't really know.

Difficult to find alternative doctors in Europe that are worth seeing.

 

[SOC]

@SOC That's interesting about Dr Klimas and Dr Rey. I didn't know that and do feel that my best bet would be to work with someone who focuses on pathogen / immune treatment. I will have to look into costs but it looks pretty expensive when you don't have insurance dam it! I'm guessing this is their site http://www.cfsclinic.com/contact.html
I doubt that the NHS (they are utterly useless when it comes to CFS) will fulfill any viral prescriptions whether I have it documented or not but maybe I could really fight for it. Other possibility is buying from India...not that I particularly like the idea but if I have no other choice.

This is their current website at NOVA Southeastern University.

Daughter and I have had HHV6 and EBV. We treated HHV6 with Valcyte through Dr Lerner before we saw Dr Rey. We both had huge improvement with it -- my daughter is now fully functional, I'm significantly improved but still impaired. However, Valcyte is incredibly expensive (~$30,000-$50,000 per year), so not a good option if you're paying yourself.

Some people are trying Famvir for HHV6, although it's not as effective. It is less toxic and much cheaper.

Right now, under Dr R's supervision, I'm taking Valtrex, Equilibrant, Florinef, verapamil, and thyroid meds all of which have given me noticeable improvements. Daughter is also taking Inosine for NK cell dysfunction. We're considering treatment for recently discovered IgG and IgM deficienies for me. We're still waiting on my other recent immune labs.

If you want excellent immune and pathogen testing, the Neuroimmune Institute is a good place to go, but it is NOT inexpensive. I think they try hard to contain costs (by US standards), but sadly, ME/CFS treatment is expensive no matter where you get it. The testing, antivirals, and immune modulators are the worst part, but it sounds like that's what you're looking for. Life is certainly not easy with ME/CFS.

I believe KDM tests for more pathogens than Drs Klimas and Rey do routinely, so if you're interested in testing for as many possible pathogens, that might be the way to go.

 

[Sushi]

@JBB

I live in the US and see De Meirleir. He has prescribed anti-virals for some though that is usually not his first approach. I also take Nexavir but my US insurance pays most of it. Too bad you can't get it paid for in the UK. It is also made in NZ so you could check their prices there.

KDM's tests for many or most of the pathogens commonly found in ME, so that is a start.

Best wishes,
Sushi

 

[*GG*]

How are your Vitamin D levels?

How about trying LDN, they are both immune modulators. I recently had a physical and was tested for STDs, I was told about 8 year sago that I had one. The tests cam out negative now. I have been on high doses of Vitamin D for the last 3 years, 5 to 10K IUs, and 4.5 mg of LDN.

GG

PS I also do feel better, but am not cured, these are 2 low cost Immune modulators, I have done other things, so cannot be sure what has helped the most. But 1 person I introduced LDN to stopped it for a while, due to taking narcotics for pain I believe, but she got back on it as soon as possible because she was feeling worse. She has only been diagnosed with Fibro though. I have been diagnosed with both and more!

 

[maryb]

@JBB
I would check out how much it is to have viral testing done with Sarah first,(Genova amongst others?) then KdM and also at Breakspear, the first few lots I had done at B/spear came back mega high for active infection - but not so much since then - so our tests vary at different times yet we're still so ill - as other ME docs say the viruses can hide,
I would say this must be your starting point before diving into a/virals.
To test for all the herpes viruses - HSV 1+2 -VZV -EBV -CMV - HHV6 -Parvo........ these seem to be the main ones.

 

[bertiedog]

Hi everyone,

This is my first post here although I have been reading information from this wonderful forum for what seems like several years now.

I wanted to hear your ideas on which Drs might be best for people in my particular situation.

I have been seeing Dr Myhill in the UK for about 18 months and she is clearly very knowledgeable, kind (extremely actually) and obviously helpful for many people she treats. Her protocol is much like Dr Teitlebahm's but has not helped me yet. I feel it is time to move on.

Not only this I am gradually developing my own understanding of CFS / ME and my own theories with what is wrong with me, and maybe others in the same subset. I think I have strong evidence that for me (and I suspect for many others) that the immune system and viruses play a major role and believe this will be the unlocking factor for me if there is to be one. Despite this I have not had any thorough immune system tests so cannot be sure. This is further supported by Dr Lipkin's recent study which highlights certain immune abnormalities. I am very interested to see what the end result of this study will be. But I guess immune dysfunction is nothing new, the question is how to fix it...so here goes my theory.

1. Stress suppresses TH1 immune system (this may be viral, emotional, work related etc). I gather TH1 immune system is for intro-cellular viral infections. This ties in with what Dr Chia seems to have found in 85% of his patients...viruses which do not destroy the cell but happily go on living in it.
2. The suppressed TH1 immune system allows viruses to jump on which using clever methods (maybe mimicking interleukin's) further suppress the immune system. I do not believe it is any one individual virus we are looking for but probably a combination of many different ones keeping our immune system at bay and all helping each other by suppressing different areas.
3. This explains why so many different treatments work to some degree. i.e anti virals (valtrex / valcyte) may improve someone somewhat as they take a viral load off the immune system. Dr Myhills protocol effectively gives more energy to the mitochondria so the immune system has more to fight with (in my theory!).

Anyway, having deduced that this is probably where my problem lies I am wondering who I should go to see. Everyone seems to hold Dr De Meirlier in high esteem from what I can gather, but if it is going to cost me £1000 per month to have nexivar + other immune modulating drugs I'm not sure I can afford to do that. Especially if this is a "for life" treatment. His office claims a 70% response to his treatment. Dr Chia seems like a cheaper option by using equilibrant, but I am in the UK. Does he do remote correspondence? He said his success rate with Equilibrant is 52%, but I'm assuming he does other treatments too. I am self trialing the equilibrant anyway going from experiences people have had on this forum. Anyone know if that is his success rate overall? Also I can't find a website for him, is there an email I can contact Dr Chia on to book appointments?

So, what would be your recommendations? Are there any other Drs who focus on the immune system and anti-virus treatment who are held in high esteem and would not cost me the world? I am based of course in the UK but can travel...America seems like an expensive trip though.

Many thanks in advance for any advice.

J

I think there are a few very important things you have left out, ie the gut is usually dysfunctional, don't forget that over 60-70% of the IS is in the gut, also the role of the adrenals and thyroid play a big part I am positive and these probably need some form of support. It will vary from person to person whether their endocrine system can get benefit from herbs and specific vitamins or possibly glandulars. Some might even need meds for this it is obviously very individual.

If a person hasn't been ill for very long then there will probably be less endocrine dysregulation but if the illness was preceeded by a lot of stress then the adrenals would probably have taken a big hit.

With regard to the gut a change of diet should be helpful ie at least wheat-free more likely gluten-free plus higher protein and good fats and less sugars and carbs. Then comes the question of are you absorbing what you are eating because you can eat the best diet possible and take lots of supplements but if they aren't being absorbed it will do you no good so something like Genova's Comprehensive Digestive Stool Analysis is helpful here. You can order this yourself over the net and there are also sample reports to give you some idea of what information you would get from this test.

The complexity of this illness is probably the reason why nobody has found the cause of ME/CFs because it affects all the body's systems and they are all likely to need support.

Pam

 

[JBB]

@Inester7 Thanks for all that info, that is definitely enlightening. Great to hear you got a large improvement with Dr Rey.

@snowathlete ...right 270 euros per month sounds do-able. Is that with KDM?

@SOC Ahh, thanks for the link to the website. That is interesting KDM is hot on pathogens. Seems like both KDM and Dr Rey / Dr Klimas's practice are down similar avenues so maybe either would be fine for me. Yes I'm aware of the huge expense of Valcyte...ouch!

@Sushi I'm interested that's not his first line of approach. What does KDM normally do first? I have of course done all the normal things like supplements, stone age diet, gut health, sleep meds (clonazepam), thyroid and adrenals, detoxing, chelating and probably more things I have forgotten. Well it would certainly be nice to know what pathogens are a problem for me and maybe he would do more testing than I can do in the UK.

@ggingues That is interesting about cheap immune modulators. I am on 2000IU of D and have been for about 3 years. I did at one point try 10K per day for a very short period but it didn't seem to help. Maybe not long term enough. Glad to hear that these helped you!

@maryb Right...thanks so much that does sound like a plan. I'll ask Dr Myhill what it is possible to do here with viral testing then if that doesn't seem like a good option maybe go to KDM. I heard Breakspear is incredibly expensive and don't really do much different than Sarah's protocol. Genova is the only place I know in the UK that does any ME type tests so I guess it is what they can do. Thanks for the list of viruses to check for...that will give me a good guide when asking what tests are possible.

@bertiedog Yes I agree with everything you say. The trouble is that I think I have covered all those areas (supplements, stone age diet cutting out gluten / dairy / carbs out completely, gut health, sleep meds (clonazepam), thyroid and adrenals, detoxing, chelating and probably more things I have forgotten). Maybe I could do more on the gut, I do wonder about leaky gut and whether it's worth testing for this?

Also I wonder about Lymes...tried Doxycycline for a month with no effect but I heard that it can take years on anti biotics. A KDM patient had the choice of IV for 6 weeks or orally for 3 years. Anyone know any places that do effective tests for Lymes? Is there a reliable test?

Thank you all soo much for all the info, I really appreciate you guys taking the time to reply, many thanks!

J

 

[xchocoholic]

Hi J

I'm in a similiar. Thanks for asking this question.

I've been mostly paleo for
6 - 7 years now. Most of my symptoms were from food intolerances, esp gluten.

I've had several cdsas which have repeatedly shown low elastace
which means my fats are subpar. I didn't see you mention this and was wondering if you've experimented with digestive
enzymes.

After all these years, I'm at the point where I can't see my gut ever healing enough for me to feel "normal" but I'm a celiac struggling to survive in a gluten filled world. Gluten = gut and brain damage for me. Hashimoto's too.

I "think" my gut is compromised to the point that any pathogen can easily overwhelm my immune system. In the last 3 years, I've had several bouts of food poisoning, h pylori and parasites.

I'm not trying to scare or discourage you
but I'm not sure if we can regain our gut health. Maybe I just need more probiotics daily too ? Are you taking these ?
I've been on these most of the time
but maybe more are needed.

On the chelation, was that heavy metals ?
Did you take supplements or iv ?

tx. sorry for the book. X

 

[JBB]

Hi J

I'm in a similiar. Thanks for asking this question.

I've been mostly paleo for
6 - 7 years now. Most of my symptoms were from food intolerances, esp gluten.

I've had several cdsas which have repeatedly shown low elastace
which means my fats are subpar. I didn't see you mention this and was wondering if you've experimented with digestive
enzymes.

After all these years, I'm at the point where I can't see my gut ever healing enough for me to feel "normal" but I'm a celiac struggling to survive in a gluten filled world. Gluten = gut and brain damage for me. Hashimoto's too.

I "think" my gut is compromised to the point that any pathogen can easily overwhelm my immune system. In the last 3 years, I've had several bouts of food poisoning, h pylori and parasites.

I'm not trying to scare or discourage you
but I'm not sure if we can regain our gut health. Maybe I just need more probiotics daily too ? Are you taking these ?
I've been on these most of the time
but maybe more are needed.

On the chelation, was that heavy metals ?
Did you take supplements or iv ?

tx. sorry for the book. X

Glad that it was useful to you .

That is interesting about the food intolerance's, despite going palio I did not find any benefit from it. I did at one point take a digestive enzyme (I forget the name) with the idea that it would help me absorb any supplements more easily. Also I was taking transdermal minerals for a long time so I could be sure these were being absorbed. None of these things helped.

I'm not sure whether my cdsas showed low elastace, I guess not because my doctor didn't mention it. Do you know which fats are low? My medium chain fatty acids are all very low but this is due to hypoglycemia causing mitochondria to switch to medium chain fatty acids instead of glucose. Not sure if this relates or not.

I don't have any gut symptoms that I am aware of. I haven't done much other than alter diet / probiotics / prebiotics to help my gut. My cdsas weren't particularly unusual. My guess is that if you do have a very damaged gut then:
1. You will have many food intolerance's as you do.
2. It will unbalance the immune system and allow pathogens into the body as you've found so it would make sense to me.

Fixing the gut: I have heard people talk about leaky gut but I'm not very knowledgeable on this, essentially holes in the gut let in pathogens / large particles of food create allergy (this in turn would enhance the TH2 immune system suppressing TH1 allowing viral infections compounding the problem...I think). I'm not sure probiotics alone are enough although I do take Kefir every morning. Not sure if it is mainstream but someone told me fermented vegetables plug holes in the gut as does (I think) zinc. Also glutamine? Anyone clarify these? There may be other things you can take to help. I think you have to work on plugging the holes imho if this seems like the crux of the problem. The other method I have heard of is fecal transplants. Probiotics according to my Dr don't get through the gut and although useful don't survive the journey. I think fecal transplants are more effective at staying there but may still not be a permanent solution.

I don't have any experience of these treatments, I've just heard about them. Are you sure you are completely gluten free? I phoned up the ceoliac society to go completely gluten free and it is very very hard like you say. Even meat can be contaminated. Basically if it doesn't say gluten free on the pack I wouldn't touch it with a barge pole if you know you are ceoliac. They also said it can take many months, sometimes several years after eating your last lot of gluten before a remission of symptoms. I'm guessing that is the exception though.

Chelation for Mercury and Lead with oral DMSA. Although me and my Dr think that this is just an unhelpful "load" and not the main issue.

Sorry for the long posts, hope that is of help! Best wishes.

J

 

[snowathlete]

@JBB the 4ME is not bought through KDM but he tells you where you can get it - Kalidashop online. They also sell various supplements that he often prescribes or you can buy elsewhere if you can find them cheaper.

He tests for lots of pathogens typically. I was tested for some viruses: herpes and found ok. Parvo which turned up very high. Bacterias: Borrelia (Lyme) and co-infections, others. I've been found positive for Bartonella and Borrelia (on abx). He checked for moulds which were ok and food intolerances which were v high - now on very low gluten, maize, dairy, and I take digestive enzymes (assume this is to reduce non-digested particles getting through gut wall). He also tests lots of immune markers; cytokines etc. hope that helps. I found it was significcantly cheaper to travel to Belgium and see KDM and be tested than the same at Breakspear and I'm not aware that any of the docs at Breakspear have published research or authored definitions on ME/CFS, unlike KDM, so that was another big factor for me.

 

[JBB]

@JBB the 4ME is not bought through KDM but he tells you where you can get it - Kalidashop online. They also sell various supplements that he often prescribes or you can buy elsewhere if you can find them cheaper.

He tests for lots of pathogens typically. I was tested for some viruses: herpes and found ok. Parvo which turned up very high. Bacterias: Borrelia (Lyme) and co-infections, others. I've been found positive for Bartonella and Borrelia (on abx). He checked for moulds which were ok and food intolerances which were v high - now on very low gluten, maize, dairy, and I take digestive enzymes (assume this is to reduce non-digested particles getting through gut wall). He also tests lots of immune markers; cytokines etc. hope that helps. I found it was significcantly cheaper to travel to Belgium and see KDM and be tested than the same at Breakspear and I'm not aware that any of the docs at Breakspear have published research or authored definitions on ME/CFS, unlike KDM, so that was another big factor for me.

Thanks Snowathlete. That does help and I am not surprised about Breakspear. So does he think that your Bartonella / Borrelia and Parvo are the main problem or just a co-infection? Is the idea to clear these out and that they are the main source of your CFS / ME?

Best wishes,

J

 

[snowathlete]

Thanks Snowathlete. That does help and I am not surprised about Breakspear. So does he think that your Bartonella / Borrelia and Parvo are the main problem or just a co-infection? Is the idea to clear these out and that they are the main source of your CFS / ME?

Best wishes,

J

He says Bart and Borrelia are my main problems and a healthy immune system can then get the Parvo under control.
I am on abx for the bacteria. No treatment given yet for Parvo but then there aren't many options; basically, IVIG is the only official treatment, alternatively herbs such as equillibrant that I hear works well.

 

[JBB]

He says Bart and Borrelia are my main problems and a healthy immune system can then get the Parvo under control.
I am on abx for the bacteria. No treatment given yet for Parvo but then there aren't many options; basically, IVIG is the only official treatment, alternatively herbs such as equillibrant that I hear works well.

Thanks snowathlete, that is interesting to hear. I wish you the best of luck with your treatment for it!

Best wishes,

J

 

[alexo]

Thanks snowathlete, that is interesting to hear. I wish you the best of luck with your treatment for it!

Best wishes,

J

KDM said the same about me... I will have to ask Klimas why they don't check for that as well...