Has anyone achieved remission or recovery from treatment by any doctor?

soxfan

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I had a complete remission for about 7 blissful months...it was wonderful and I thought I would stay that way. I went back to working more hours and sleep was refreshing again. Sadly I started going downhill for no apparent reason as I was very careful to take things slowly.

I believe a family crisis is what sent me out of the remission and I haven't been the same since...this was back in 2007-2008.
 

Folk

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Folk, I think an interesting question would be why he went 'cuckoo' on Lyme...having seen the way KDM works, I think it's very likely that it has something to do with evidence, both from symptoms and several different tests, and not on a hunch.

Something I think people forget is that Dr. Lerner found Lyme in a significant proportion of his patients. Since Lyme tests are insensitive, the proportion with Lyme may actually be higher - whether it would be as high as the proportion KDM is reporting is impossible to say, but it would seem that Lyme is involved in a significant number of ME cases.

Well, he uses tests and finds it on everyone.
But the question is if this tests are reliable or not. Most doctors would say it isn't, he probably thinks it is.

I really think he believes now that every ME/CFS is actually Lyme (or co infections).
 

msf

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Something else to think about is, that if ME patients are a heterogeneous group, which most experts seem to think they are, then there might be a tendency for those people with an identifiable trigger, like Lyme say, to then describe themselves as being in remission from Lyme, rather than ME per se. The question then is it possible for those without an identifiable trigger to get better, and to answer that you need to prove that they are a homogenous group, which hasn't been done yet.

If you are just asking has anyone who has seen an ME doctor gone back to work and lived a normal life for a number of years, I would say the answer was yes: my father came down with the classic mono-like ME, and he kept working through it, and after a couple of years recovered to the point where he could go walking again and drink alcohol. He had to be careful about overdoing it (PEM as we call it these days), but he lived a pretty normal life for about 30 years, until he died of a heart attack, which might have been realted the ME, but then there are lots of 68 year olds who die of heart attacks.

I know someone will suggest that he only had mild ME, but that is my point - it is a heterogeneous population, so any blanket statements about remission or cure are probably not very helpful.
 

msf

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Ok, but then if you go to see him and you actually are one of those with Lyme, you might find that he is able to help you achieve remission/90% improvement.
 

Folk

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Ok, but then if you go to see him and you actually are one of those with Lyme, you might find that he is able to help you achieve remission/90% improvement.

Yes but the problem is. It seems like if you go to see him, he will find lyme/co no matter what.
 

justy

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Well, he uses tests and finds it on everyone.
But the question is if this tests are reliable or not. Most doctors would say it isn't, he probably thinks it is.

I really think he believes now that every ME/CFS is actually Lyme (or co infections).

I have not been found to have Lyme by KDM. He does not just rely on 'one' test but does multiple Lyme and co infection tests and also in depth immune profiling which also can flag up intracellular chronic infections. He uses the same tests that are used by most ILADS doctors the world over.

He doesn't claim Lyme is the cause of M.E or if you come up with Lyme or other infections and treat you will get better. As far as I can tell hi thinking is that M.E allows infections like Lyme to get a hold and then they further supress the immune system in weird ways. Some of his patients get better juts on Lyme treatment, but others have 'M.E' and may only improve if infections are treated.

As I said in my earlier post is approach is to test the hell out of you In the hope that things will be thrown up that are treatable. He is also investigating me for biotoxin illness as this is another thing that can mess with the immune system, in other people he may find parasites or gut Dysbiosis. My Dysbiosis is only mild and he believes, as do many other docs that you treat the infections first then move on to the next thing until the patient is feeling better or has an improvement in quality of life.
 

msf

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I think the same potential problem applies to every ME doctor, probably for the very reason that it is a heterogeneous disease, and different doctors are dealing with different parts of it.
 

Daffodil

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KDM actually seemed surprised that he is finding lyme in most of his patients....when he first told me, he threw his hands up in the air as if to say, "wtf! most of the patients are coming up positive for lyme" as if it was the last thing he expected or even wanted...but there it was. so yea..i would have to agree that with KDM, there has to have been real evidence.

it was once suggested that since KDM gives infectolabs so much business, maybe the lab is coming up with a lot of false positives for him? I don't know....but I just met a woman at KDM's office who had a 10 year remission cuz KDM treated her lyme within 2 yrs of her getting ill. now, she is having a relapse and is back for more treatment. of course, I was dying to know if her illness began after a flu like "mono" situation and she said yes.

she said lyme lives in the joint synovial fluid even if one has no joint symptoms.

I am not saying I believe its lyme for sure that is behind CFS....just relating my experience.

maybe its some other intracellular bacteria. I asked KDM why the bacteria doesn't show up when people do sequencing on tissue (as he did). he said, "not deep enough."
 

Folk

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I have not been found to have Lyme by KDM. He does not just rely on 'one' test but does multiple Lyme and co infection tests and also in depth immune profiling which also can flag up intracellular chronic infections. He uses the same tests that are used by most ILADS doctors the world over.

He doesn't claim Lyme is the cause of M.E or if you come up with Lyme or other infections and treat you will get better. As far as I can tell hi thinking is that M.E allows infections like Lyme to get a hold and then they further supress the immune system in weird ways. Some of his patients get better juts on Lyme treatment, but others have 'M.E' and may only improve if infections are treated.

As I said in my earlier post is approach is to test the hell out of you In the hope that things will be thrown up that are treatable. He is also investigating me for biotoxin illness as this is another thing that can mess with the immune system, in other people he may find parasites or gut Dysbiosis. My Dysbiosis is only mild and he believes, as do many other docs that you treat the infections first then move on to the next thing until the patient is feeling better or has an improvement in quality of life.

What did he find in you?

Btw I have my doubs on most ILADS too...
 

MeSci

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I have also been fortunate to receive Deep Sequencing, so we now know I have a rare mitochondrial DNA deletion in "protein Complex V", also known as ATP Synthase. With this particular deletion, there is an "uncoupling" of oxidative phosphorylation, and the patient produces heat via a protein called Thermogenin, INSTEAD of the ATP they should. These worst mitochondrial symptoms, manifested in hot thighs after activity (all night - can't sleep most nights, even with ice packs on them), and pathological exhaustion, worse after activity, were also eliminated by Pentaglobin.

I have often suspected uncoupling, and have posted about this possibility a few times. A lot of people don't seem to realise that uncoupling can be partial and not necessarily fatal!

But my own apparent excessive thermogenesis whilst running out of energy has not been lifelong - only since developing other ME symptoms. Is it lifelong with your condition, or can something switch it on at some point?
 

MeSci

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Ah, I see. I would call that a cure or a complete remission. I don't believe that's achievable at this point in time, just like it's not achievable with MS, diabetes, or other chronic conditions. The only person I know who is apparently cured is my uncle and he only had mild ME/CFS -- never progressed to moderately or severely ill.

I have never heard a top ME/CFS specialist claim to be able to achieve cure or complete remission, although any of them may have some cases of full recovery/apparent cure. What the specialists I've heard talk say they can often (not always) do is improve patients' condition and functionality through symptomatic treatments. That appears to be achievable.

My definitions of remission and recovery/cure are essentially the same as your internet finds. Remission may be temporary, and may require continuing medication or other treatment to maintain it, whereas cure/recovery is permanent. An example of remission is in relapsing/remitting MS. I am not sure what complete remission would be - a temporary complete cessation of symptoms (and signs)?

You seem to be defining remission and recovery in the opposite way to normal usage, and I am getting confused!
 

justy

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What did he find in you?

Btw I have my doubs on most ILADS too...

He found me IGG positive for Chlamydia Pneumoniae, which is not surprising as I have definitely had pneumonia in the past 7 years. The infection can become chronic and there is a lot of research showing Cpn to be a triggering factor for M.E and also for the chronic form to cause asthma etc and I have had a lot of issues with asthma as well.

He also found Bartonella at low titres - can be from ticks, biting insects such as fleas etc. from cats and dogs. I have lived with cats and dogs a lot, and was bitten by a horsefly the year before my serious relapse 7 years ago.

I also had some other stuff going on - positive ANA, thyroid out of whack (subclinical still) low vit D, failed VCS for biotoxin illness, high PEG2, high sCD14, low CD57, High natural killer cells, high IL8, etc etc.
 

msf

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Folk, I would ask you the same thing I asked Gijs - does that mean you think that there aren't any contradictions in the IDSA position?
 

Dr.Patient

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I achieved an almost complete remission for about 9 years completely spontaneously early in my illness, so even that is possible .

That was great! Any thoughts on why you may have relapsed from that point, specifically, any increased physical exertion or infection? Thanks.
 

Sushi

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I forgot to add (from my own history as it was so long ago)....I had a several year remission after doing a long course of IV hydrogen peroxide and IV EDTA chelation. I can't be sure which aspect was more important but I think it was the IV hydrogen peroxide working as a pathogen killer. Then I very slowly started to get sick again. Perhaps because the pathogens reactivated?

My present theory, looking back at my own history, is that while I probably knocked off some pathogens, my immune system was still out of whack, so it didn't last. I muddled along a few more years, able to work full time if I rested in the evenings and weekends, until 2006 when life circumstances took me into many months of pushing past limits. Then, overnight, I crashed to my lowest level and have been very slowly trying to climb out of that hole since.

Sushi
 

Folk

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Folk, I would ask you the same thing I asked Gijs - does that mean you think that there aren't any contradictions in the IDSA position?

If that is what I think it is (that there is no chronic lyme)
My opinion is: I don't know... And frankly what I think wouldn't really matter.. I t would be just an opinon from someone who's not a doctor nor does understand the subject well enough to state something.

The problem here is that people thinking that by dismissing chronic lyme, we're saying "those people aren't sick, theyr faking it, they have pscychological problmems". That's not true... I believe they're ill, I'm just not sure if the cause is chronic Lyme...
 

Folk

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He found me IGG positive for Chlamydia Pneumoniae, which is not surprising as I have definitely had pneumonia in the past 7 years. The infection can become chronic and there is a lot of research showing Cpn to be a triggering factor for M.E and also for the chronic form to cause asthma etc and I have had a lot of issues with asthma as well.

He also found Bartonella at low titres - can be from ticks, biting insects such as fleas etc. from cats and dogs. I have lived with cats and dogs a lot, and was bitten by a horsefly the year before my serious relapse 7 years ago.

I also had some other stuff going on - positive ANA, thyroid out of whack (subclinical still) low vit D, failed VCS for biotoxin illness, high PEG2, high sCD14, low CD57, High natural killer cells, high IL8, etc etc.

But no doctor had found Chlamydia before? That's one of the first connections they make.

Also, he found Bartonella, I said Lyme or other tick borne diseases... Still every patient of his that I talked to had some of those. Including you and Sushi now.
 

Sushi

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Also, he found Bartonella, I said Lyme or other tick borne diseases... Still every patient of his that I talked to had some of those. Including you and Sushi now.

While most methods of testing for tick borne illnesses have a fair degree of inaccuracies (varies from test to test), as I understand it, a positive by PCR is hard to argue with. A negative PCR, on the other hand, doesn't mean so much.

Sushi
 

Folk

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Let me state clear that I'm not saying Dr. De Meirleir is a quack. Even though I'm afraid that there is a possibility.

Who knows? Perhaps in the end he will be the one who has got it right
That's not my bet, but it's a possibility. (I would certainly bet on Jarred Younger, Montoya and Lipkin now)

I even have a app scheduele for the end of April with De Meirleir. I'm just trying to decided if I should go or if I should find some other specialist (probably Dr. Kaufman) less... let's say "experimental".
 
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