80% of CFS sufferers have Lyme? Is this true or an exaggeration by LLMDs to make money?

[SOC]

@Hip, I strongly suspect that muscle stiffness is a feature of ME. I don't think it can be used to differentiate between ME and Lyme, or at best is a dubious characteristic.

Agreed. I believe muscle stiffness rather than actual cramping is more common in ME/CFS. Also, isn't the fluid and swelling in the joints an acute Lyme symptom, but not necessarily seen in chronic Lyme?

 

[beaverfury]

The thing is though based on symptoms every CFS suffer should suspect that they have Lyme, the symptoms are 100% identical essentially. I posted another thread asking if there were any tell-tale symptoms that could differentiate and no one has an answer.

This proteome study of cerebrospinal fluid would seem to indicate that there are at least some pathological differences, if not big distinctions in symptoms.
http://www.ncbi.nlm.nih.gov/pubmed/21383843
Distinct cerebrospinal fluid proteomes differentiate post-treatment lyme disease from chronic fatigue syndrome.

I'm tending to lean towards Alex's view on the matter.
[quote="alex3619, post:

In any case it may turn out that the pathogen is not important, its what the pathogen does to change our physiology that is important, and that change becomes persistent. Nobody knows yet. I wish we did. We do know that there appear to be distinct human gene clusters that might differentiate between ME and Lyme, but we need more research to be sure, especially since there is also a big overlap in genes.
.[/quote]

But for reasons other than borrelia setting off and/or maintaining me/cfs, i think it's important to deal with the lyme spirochaete should you be deemed to have it.

Lyme Disease and the Heart
http://www.pbraunmd.org/pbraunmd/circulation2013krausee451_4sm.pdf

Inflammatory brain changes in Lyme borreliosis
http://brain.oxfordjournals.org/content/119/6/2143.full.pdf

The meninges, spinal nerve roots and cranial nerves are most
commonly involved in LNB. Chronic CNS involvement
of LNB may mimic diseases such as neurosyphilis,
meningoencephalitis of viral, fungal or mycobacterial origin,
multiple sclerosis, brain tumor, autoimmune disease, stroke
or Alzheimer's disease.

 

[beaverfury]

Having grown up in the midwest, I thought everybody had been bitten by a tick at one time or another. Is this, in fact, not true?

I distinctly remember camping somewhere in IA or KS on a cross-country trip -- I believe I got 10 tick bites in a single day. No bulls-eye rash that I recall... not that we were looking for such a thing all those years ago.

I'm starting to wonder if I should be tested again for tick-borne diseases. I had the standard tests (Elisa and Western Blot?) 7-8 years ago and was told I only had 2 bands and more were needed for a Lyme diagnosis.

**Sigh** It just never ends, does it?

Same where i live. Everyone goes out into the bush. Everyone gets bitten by ticks.

Look at this from wiki on -Tuberculosis

About 90% of those infected with M. tuberculosis have asymptomatic, latent TB infections (sometimes called LTBI),[45] with only a 10% lifetime chance that the latent infection will progress to overt, active tuberculous disease.[

I guess it depends on the pathogenicity of the infection (found that word on wiki(it's probably used wrong)) and the biology of the host.

 

[heapsreal]

I think there are too many people that find Improvement by treating pathogens to say its not important but maybe there's the sub group think, the hit and run infection leaving behind the damage and then the hit and lets make this home infection. Maybe the later have immune deficiencies as they cant clear the infections especially on their own? ?

 

[Firestormm]

There was this thread on Lyme testing: http://forums.phoenixrising.me/index.php?threads/lyme-testing.25260/

Any doctor claiming to a patient that 80% of CFS patients have Lyme is really dodgy, and should not be trusted. There currently no evidence that the 'alternative' testing for Lyme used by some is able to provide any useful information to patients, and the hypothesis that Lyme is a cause of the ill health for a large number of 'CFS' patients who have tested negative with 'mainstream' tests has not picked up any good supporting evidence over the two decades since it was proposed.

At first, this idea may have been plausible and worth exploring (although only as part of research, and with genuinely informed consent), but if it were true that this testing were of value, there should be some good positive evidence for it by now, and there is not.

There is some overlap in symptoms between Lyme and CFS, so it could be worth getting tested, but make sure to use testing that has good evidence to show it's validity, as some of the 'alternative' testing available seems to provide no useful information at all, and can just serve to dump patients with inaccurate diagnoses that lead them to inappropriate treatments (and to lose a lot of time, effort and money).

Best of luck to everyone looking for accurate answers to difficult questions.

Personally, I think the incidence and prevalence of Lyme is being massively over-sold in vulnerable communities and the treatments being offered/sold need to be carefully considered and/or avoided like the plague.

I worry very much about the overuse of antibiotics especially as people like Lipkin are now moving into the microbiome and antibiotics strip your gut flora of I believe essential bits and bobs.

One of our articles recently carried - I think it was one from Andrew - a rather good video about the microbiome and talked about the effects of antibiotics - especially long term prescriptions.

How the hell can you be reassured about a test - when on the one hand people are tested by the e.g. NHS and told they have no infection, and then pay for a test and are told they are?

If you are bitten, and get the rash, get a test, a recommended test from your GP if you develop symptoms. There's a wealth of advice about Lyme.

Anyone claiming anything about ME and this bacteria needs to bloody prove it by publishing their evidence - and/or getting their 'test' independently validated.

Let's also not forget Lipkin's recent work: no Lyme bacteria found.

Maybe it's hidden in the gut, or the tissue, and not the blood or the spinal fluid... That should keep people spending money for another 50 years.

It's one hell of a decision to make. Some will say that they have nothing to lose. Some will tolerate the 'radical' treatment based on some test or another and convince themselves the additional suffering is worth it - perhaps because of the cost of the treatment and because they think they have an answer.

I do think we all tend to got through a period - sometimes for years - of needing to try anything and everything and in the process spending a fortune, that in latter years we wish dearly to have held on to.

Called desperation I suppose.

Maybe there will be some science someday that will declare this bacteria, along with Herpesvirus, and other popular notions, are 'hidden' somewhere... and maybe there wont.

What a life

 

[Firestormm]

I tested negative twice using the CDC two-tiered test from Quest, but it's very difficult to know by symptoms because the symptoms between CFS and Lyme are the same.

It is difficult for me at the moment to get into the differences between clinical presentations, tests, criteria, means of contraction etc. etc. between ME and Lyme.

The difficulties are further compounded of course by people having a diagnosis of ME, and being told they (also) have Lyme. If you listen to those who think they are similar, then I guess it is hard to see any difference.

Is ME contracted by a tick-bite? No. Does ME carry the 'bulls-eye' rash? No. But then again, it will and is argued, that the answers could in some instances be 'yes'.

In ME we truly need a biomarker. For Lyme you have one. It's the tests, and the interpretations of them, and the numerous theories and crap science that screw up the picture.

Point is, that if you stick to the CDC/NHS criteria there are differences. If you adopt the sentiment expressed on forums and read the stories from patients - the picture proves cloudy - especially if you come across someone with a supposed diagnosis of ME who was treated with antibiotics and feels they have recovered.

Throw in a few theories - that lack evidence - and it's small wonder people are kerfuddled. I think that for some - being treated with something is better than being treated with seemingly nothing.

Then again, you're the scientist, and I'm the dumbo

 

[Hip]

@Hip, I strongly suspect that muscle stiffness is a feature of ME. I don't think it can be used to differentiate between ME and Lyme, or at best is a dubious characteristic.

Well, if you perform a boolean Google search on stiff neck or neck stiffness in the context of Lyme, you find dozens of medical sites stating that neck stiffness neck is a symptom of Lyme disease.

Whereas if you perform the same boolean Google search on stiff neck or neck stiffness in the context of ME/CFS, there are no medical sites stating that neck stiffness is a symptom of ME/CFS.

Agreed. I believe muscle stiffness rather than actual cramping is more common in ME/CFS. Also, isn't the fluid and swelling in the joints an acute Lyme symptom, but not necessarily seen in chronic Lyme?

According to this site, swelling in the joints, especially in the knees, is a symptom found in persistent Borrelia infections.

 

[shannah]

Well, if you perform a boolean Google search on stiff neck or neck stiffness in the context of Lyme, you find dozens of medical sites stating that neck stiffness neck is a symptom of Lyme disease.

Whereas if you perform the same boolean Google search on stiff neck or neck stiffness in the context of ME/CFS, there are no medical sites stating that neck stiffness is a symptom of ME/CFS.

However, to complicate matters, a stiff neck is associated also with fungal infections and fungal infections are common with both Lyme and ME

 

[heapsreal]

However, to complicate matters, a stiff neck is associated also with fungal infections and fungal infections are common with both Lyme and ME

meningittis too. its too commona symptom with infections.

 

[alex3619]

Well, if you perform a boolean Google search on stiff neck or neck stiffness in the context of Lyme, you find dozens of medical sites stating that neck stiffness neck is a symptom of Lyme disease.

Whereas if you perform the same boolean Google search on stiff neck or neck stiffness in the context of ME/CFS, there are no medical sites stating that neck stiffness is a symptom of ME/CFS.

According to this site, swelling in the joints, especially in the knees, is a symptom found in persistent Borrelia infections.

If you talk to patients instead of relying on literature that fails to list ME symptoms going back to pre-1980, then you would realize how common stiff muscles are. I have had stiff muscles in neck, back and arms, and also feet of all places. We could do a poll, but would have to include Lyme testing etc.

Run a Google search on "stiff muscles CFS" and you get over 4200000 hits.

PS See for example (my bolding): http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf

The Presence or Absence of Various Pain Syndromes is highly variable: The pain syndromes associated with the acute and chronicphases of M.E. may be described as Early and Late findings.

Early Findings:
(a) severe headaches of a type never previously experienced;
(b) these are often associated with neck rigidity and occipital pain; (c) retro-orbital eye pain; (d)
migratory muscle and arthralgia pain; (e) cutaneous hypersensitivity.

Late Findings: Any of the early findings plus (f) fibromyalgia-like pain syndromes. This is only a partial list of the multiple pain syndromes. Many of the pain features tend to decrease over time but can be activated or increased by a wide range of external & chemical stressors. (See Clinical and Scientific Basis of M.E./CFS, Chapter 5, pps. 58-62)

PPS Acheson 1959 talking of ME outbreaks notes stiffness as a sign for many patients in some outbreaks. http://www.name-us.org/DefintionsPages/DefinitionsArticles/Acheson1959.pdf

 

[leokitten]

Very likely, imo.

I wonder if an immune disorder will be the root of illness with the various infections we get just opportunistic infections. Isn't one argument ME/CFS deniers make that these are common infections that everyone is exposed to, so they shouldn't be causing problems? The "shouldn't" part assumes we have normal immune systems, which is the flaw in their logic, of course.

Of course it's also possible that some as yet unidentified infection is causing the immune dysfunction....

I truly believe it's a combination of it all:

• genetic predisposition to immune dysfunction setting the stage
• environmental factors such as chronic stress, toxins, etc altering the immune system over time
• common pathogens which live in most of us constantly checking the immune system and whenever it is temporarily weak they take more ground and go latent afterwards, so in cycles and much of this isn't noticed clinically for years and the more ground they have the more immune dysfunction they cause
• until finally the scale is tipped and these pathogens attack on a larger scale causing total dysfunction and throwing us into CFS

 

[Wayne]

@SickOfSickness I think the other lab you are thinking of is infectolabs, which does a different sort of lyme test than other labs. It is in Germany, however, so shipping blood there can be expensive and unreliable for those of us not in Europe.

My ND did my Lyme testing with Labcorp. He thought it was more sensitive than Igenix, and tested for other things at the same time. Medicare covered the whole thing if I remember correctly. --- Tested positive for Lyme (Borrelia Burgdorferi), Babesia, Bartonella , Ehrlichia, perhaps more; looks like I have the whole enchilada. Some LLMDs believe there are many more co-infections which have yet to be identified, perhaps as many as 300.

 

[alex3619]

I think I can address the thread title this way. How many of us have the disease category of an expert choice if the expert is:

1. An immune researcher?
2. A neurological researcher?
3. An allergist who specializes in ME?
4. A biopsychosocial psychiatrist?
5. An average psychiatrist?
6. A Lyme doctor?
7. An endocrine researcher?
8. A cardiovascular specialist?
9. An orthostatic intolerance specialist?

 

[vamah]

I think I can address the thread title this way. How many of us have the disease category of an expert choice if the expert is:

1. An immune researcher?
2. A neurological researcher?
3. An allergist who specializes in ME?
4. A biopsychosocial psychiatrist?
5. An average psychiatrist?
6. A Lyme doctor?
7. An endocrine researcher?
8. A cardiovascular specialist?
9. An orthostatic intolerance specialist?

You have a point there. A case of " when you have a hammer, everything looks like a nail."

 

[Hip]

If you talk to patients instead of relying on literature that fails to list ME symptoms going back to pre-1980, then you would realize how common stiff muscles are. I have had stiff muscles in neck, back and arms, and also feet of all places. We could do a poll, but would have to include Lyme testing etc.

Run a Google search on "stiff muscles CFS" and you get over 4200000 hits.

Yes, but none of those hits I can see say that stiff muscles are a symptom of CFS.

I have had stiff muscles in neck, back and arms, and also feet of all places. We could do a poll, but would have to include Lyme testing etc.

Do you have anxiety disorder? Many ME/CFS patients have generalized anxiety disorder (GAD) as a comorbid condition with their ME/CFS, and stiff muscles (hypertonia) are a common symptom of GAD. So if you did a poll, you probably find that some ME/CFS patients do have stiff muscles — but this may be due to them having GAD.

In any case, in Lyme, it is specifically the neck muscles which are the most stiff.


The other difference between Lyme and ME/CFS is that post-exertional malaise (PEM) does not seem to be a part of Lyme, as far as I can see.

So that is another way to help distinguish Lyme from ME/CFS: if you have a PEM crash after physical or mental exertion, then you have ME/CFS not Lyme.

Though it is certainly true that Lyme and ME/CFS are very similar, and it may well be that same mechanism is responsible for the cognitive symptoms in both diseases.

 

[alex3619]

I am a laid back placid kind of guy, except maybe when I get angry over some issues in advocacy like hearing stories from the UK about official abuse of the disabled.

The way it works for me is this. As I push myself harder and harder (this started when I was still working) I cause more and more muscle pain. That pain is associated with increasing muscle rigidity. My fatigue rises as well, and my energy crashes. Other symptoms rise as well. The effects of over-activity used to persist for weeks back then, and my capacity was in free-fall. That muscle pain persisted for fifteen years after I gave up such activity, but then I was in physio for a year after this started ... gotta do your exercise! I also kept working, though only part-time.

Even before I was in a lot of pain though I had muscles that locked up a lot, which was noticed by some treating practitioners. By lock up I do not mean seizure of the muscle, I mean resistance ... stiffness. I could move the muscle. The muscle function also improved with stretching.

It is suspected (but I have yet to see objective science for this) that increased lactic acid results in stiff muscles, or is at least associated with it.

My point on your argument about stiff muscles as a discriminating marker is this: its unsubstantiated. It needs research to verify it, and by research I mean a clinical study. I cannot argue on the other markers you suggest. If you are going to rely on maybes and mights about ME and muscle stiffness, but accepting authority on Lyme, and arguing that absence of information is proof of absence in a situation where most of the authorities have had a policy of ignoring non-fatigue symptoms since 1989 and arguably 1970, then its very hard to really justify it. It might be right, or it might not, only objective science could tell the difference.

In my experience (myself and others) ME muscle stiffness can occur in any muscle. It might be more prevalent in the neck specifically in Lyme, that is a separate argument and requires separate support. Such stiffness might also be more common in anyone with comorbid fibromyalgia, that is possible. Again, how would we know? With appropriate clinical studies. How do we get those? At the very least we need a diagnostic biomarker for ME to be really sure. In the meantime I would think a 2 day CPET would provide a possible marker, though measurement of muscle lactate might also be useful. On the flip side it would also need a really good diagnostic protocol for Lyme. Sigh. I wonder how you would objectively assess muscle stiffness though, including stiff neck?

It definitely does not help the argument that at least one probable ME outbreak had muscle stiffness as a symptom in many patients.

 

[Hip]

@alex3619
There have been a large number of studies into ME/CFS and its various symptoms over the years, and none of these studies have ever reported muscle stiffness in ME/CFS patients. Researchers have found muscle stiffness as a symptom in dozens of diseases (such as in these diseases listed here), but not in ME/CFS.

So until such time as a study demonstrates that muscle stiffness is present inME/CFS, it would be prudent to assume it is not part of ME/CFS.

In any case, it seems to me that your own muscle symptoms that you describe above are muscle spasms, not muscle stiffness. If the tensions in your muscle can be stretched out, or go away after some days, then these are spasms (cramps), not muscle stiffness. Muscle stiffness can give rise to muscle spasms, but they are not the same thing. Muscle stiffness is a constant thing, spasms/cramps are temporary. I think you are confusing the two.

Spasms are found in ME/CFS, and in fact muscle spasms can be cause by enterovirus infection — a virus closely associated with ME/CFS.

 

[SOC]

@alex3619
Spasms are found in ME/CFS, and in fact muscle spasms can be cause by enterovirus infection — a virus closely associated with ME/CFS.

And the Lyme spirochete is closely related to ME/CFS as well. I think your logic is getting a little circular.. or spiral... or something definitely nonlinear. There are a lot of infections related to ME/CFS. I doubt we know which symptoms are exactly or exclusively related to which infections or to ME/CFS independent of those infections (if there is such a thing). That is one of several things that makes differential diagnosis with ME/CFS difficult.

PEM may be the only unique, or sufficiently unique, symptom to distinguish ME/CFS from other illnesses with some of the same symptoms.

Muscle stiffness, not spasms that can be stretched loose, is known in ME/CFS. It goes along with myalgia, which is well known in ME/CFS.

 

[alex3619]

@alex3619
There have been a large number of studies into ME/CFS and its various symptoms over the years, and none of these studies have ever reported muscle stiffness in ME/CFS patients. Researchers have found muscle stiffness as a symptom in dozens of diseases (such as in these diseases listed here), but not in ME/CFS.

So until such time as a study demonstrates that muscle stiffness is present inME/CFS, it would be prudent to assume it is not part of ME/CFS.

In any case, it seems to me that your own muscle symptoms that you describe above are muscle spasms, not muscle stiffness. If the tensions in your muscle can be stretched out, or go away after some days, then these are spasms (cramps), not muscle stiffness. Muscle stiffness can give rise to muscle spasms, but they are not the same thing. Muscle stiffness is a constant thing, spasms/cramps are temporary. I think you are confusing the two.

Spasms are found in ME/CFS, and in fact muscle spasms can be cause by enterovirus infection — a virus closely associated with ME/CFS.

Yes, they went away after some days. 5475 days or more.

PS I definitely have a Coxsackie 3B infection though, which targets muscles, though I have never had a muscle biopsy to see if they are infected.

 

[WillowJ]

I think spasms and cramping are also noted by patients in ME/CFS.