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

[Fogbuster]

Lol! And it doesn't get any better as the years go by with this illness. You think you've covered all the bases and then something new pops up. The worst is when I'm confident I've ruled something out only to find the tests or interpretations were no good.
So far I've been through:
I don't have herpesviral infections (I had the tests and my GP and a CFS specialist said...) -- Wrong
I don't have OI (My GP says I'd be fainting if I had OI) -- Wrong
I don't have immune dysfunction (GP says I'd be dying of something if I had immune dysfunction) -- Wrong
and there's probably more.

Lyme (or more specifically -- some tick borne illness) is probably another one of these things I thought I didn't have to try to figure out. Geez!

Lol! And it doesn't get any better as the years go by with this illness. You think you've covered all the bases and then something new pops up. The worst is when I'm confident I've ruled something out only to find the tests or interpretations were no good.
So far I've been through:
I don't have herpesviral infections (I had the tests and my GP and a CFS specialist said...) -- Wrong
I don't have OI (My GP says I'd be fainting if I had OI) -- Wrong
I don't have immune dysfunction (GP says I'd be dying of something if I had immune dysfunction) -- Wrong
and there's probably more.

Lyme (or more specifically -- some tick borne illness) is probably another one of these things I thought I didn't have to try to figure out. Geez!

I sympathise greatly with you @SOC . Just had my herpes virus blood tests yesterday which I expect to come back normal. Went to a cardiologist and spoke about my OI symptoms Im experiencing and he basically said you dont have pots or blood pressure problems so in terms of your symptoms there's nothing I can do! Woopdedobazzle!

 

[Hip]

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.

If you meant to say "the Lyme spirochete is closely associated with ME/CFS", then I don't believe that is the case. I have not seen any studies which have shown an association between the Lyme spirochete and ME/CFS. Furthermore, this study found that you can distinguish between Lyme and ME/CFS by examining the proteins in the cerebrospinal fluid, indicating that Lyme and ME/CFS are categorically different diseases.


I also just came across this study, which — echoing what I wrote above — says that CFS patients who do not manifest the erythema migrans (the Lyme bullseye rash), Bell's palsy, or large joint arthritis are not likely to have laboratory evidence of Borrelia infection.

So it would seem that these three symptoms are indeed a good method for distinguishing Lyme from ME/CFS.

If you also include PEM as a means to distinguishing Lyme from ME/CFS, you start to get a pretty robust differential diagnosis that is probably going to be correct in most cases.

Put it this way: if you have general Lyme / ME/CFS symptoms, and you:
• Live in a Lyme area
• Came out positive in your Lyme blood tests
• Had an erythema migrans bullseye rash
• Experienced Bell's palsy
• Have arthritis of the knees, with knee joint swelling
• Have a chronically stiff neck

then you can probably say with a reasonable certainly that you have Lyme rather than ME/CFS.

Equally, if you don't satisfy any of the above, then perhaps you are more likely to have ME/CFS rather than Lyme.

 

[SOC]

Put it this way: if you have general Lyme / ME/CFS symptoms, and you:
• Live in a Lyme area
• Came out positive in your Lyme blood tests
• Had an erythema migrans bullseye rash
• Experienced Bell's palsy
• Have arthritis of the knees, with knee joint swelling
• Have a chronically stiff neck

then you can probably say with 99.9% certainly that you have Lyme rather than ME/CFS.

Equally, if you don't satisfy any of the above, then you more likely have ME/CFS rather than Lyme.

I don't think there's a question in the case of Lyme with all the symptoms or ME/CFS without any Lyme symptoms. The overlap area is the problem. We're not talking about acute Lyme vs ME/CFS, but whether chronic Lyme might occur as part of ME/CFS in the same way chronic enterovirus or herpesvirus infections occur in ME/CFS.

I don't disagree that acute Lyme disease (or related tick-borne disease) and ME/CFS are not identically the same illness any more than acute mononucleosis and ME/CFS are not identical. However, the chronic illness resulting from both of those pathogens may have a similar root, probably in an immune dysfunction that is genetic or pathogen caused.

 

[Hip]

@SOC
Certainly the overlap area is a problem, and if you were only positive for say 2 or 3 out of those 6 differential diagnosis criteria I listed above, then you might not be so sure whether you have Lyme or ME/CFS.

But in the cases where you are positive for 5 or 6 of these criteria, this I think would be enough to say that you have Lyme rather than ME/CFS, with a high degree of certainty.

 

[roxie60]

A post made a while ago on this thread may be of interest. Here it is repeated:

And of course you can take into account whether you live in a Lyme area or not. If you don't, this further stacks the odds against you having Lyme.

And the classic "bull's eye" pattern Erythema migrans rash occurs in about 75% of Lyme cases, so if you never observed any such rash on your body, then again this increases the odds against you having Lyme.
​

I disagree with the first sentence vehemently......the attitude that if 'one is not LIVE in a Lyme area' is terribly short sighted. This is the reason doctors told me the last five years 'no Lyme test for you' because you do not live in a Lyme area of the country'. This is so dark ages thinking, it also depends on (in)accurate/delayed govy reporting of tick migration. Also if I understand correctly people dont get reported as having Lyme unless they fit the CDC guidlines which many have stated are poor as relates to Lyme. We live in a mobile society, I have been in at least 43 states and some foreign countries (btw doctors never asked me if I traveled). For them to ignore my history and block testing for Lyme is irresponsible based on where I 'LIVE'.

The second sentence, that 75% is much higher than studies/reports I have read in the last few weeks regarding the rash.

 

[roxie60]

Has anyone done the IgeneX test and turned up negative?

Very good question

 

[roxie60]

@leokitten

I tested pretty much neg with Igenex (also had the co-infections testing) yet they found Bartonella by PCR in Belgium. Igenex doesn't test for the strain of Bartonella that is being often found in ME/CFS patients.


Sushi

@Sushi First, what do you mean by 'pretty much negative'? Sounds like 'kind of pregnant'. I thought with IGenex you are either negative or positive, is there and inbetween status?

Thanks for sharing about your Bartonella experience with IGenex. I guess I dont understand how IGenex can find negative for Bartonella but another lab finds positive. I should be getting my IGenex results by Tuesday and I'm stressing out. Can't figure out if I'm more stressed that I might have Lyme or more stressed that it will be negative and I still have no answers to my health issues.

@Sushi Did you also have a LOW CD57 test result?

 

[Sushi]

@Sushi First, what do you mean by 'pretty much negative'? Sounds like 'kind of pregnant'. I thought with IGenex you are either negative or positive, is there and inbetween status?

Thanks for sharing about your Bartonella experience with IGenex. I guess I dont understand how IGenex can find negative for Bartonella but another lab finds positive. I should be getting my IGenex results by Tuesday and I'm stressing out. Can't figure out if I'm more stressed that I might have Lyme or more stressed that it will be negative and I still have no answers to my health issues.

@Sushi Did you also have a LOW CD57 test result?

Hi Roxie,

Igenex is very open to interpretation by various doctors--even doctors who treat a lot of Lyme disease. It is not cut and dried. One doctor looked at my Igenex and said it was negative and another thought it was probably positive. That is why it is good to have several types of testing.

It is also possible for all one's Borrelia (Lyme) tests to be negative and 1) you actually have it but the testing you had didn't test for the strain you have (there are over 100 strains known but Igenex tests for just a few of them) or 2) you have it and it is hiding (remember it is a stealth infection and has many ways of hiding) but after an antibiotic challenge you will test positive for it.

And as for Bartonella, there are many, many strains and Igenex tests for only 3 of them. I have a strain that they don't test for.

My CD 57 was 141 last March.

Best,
Sushi

 

[Sushi]

@roxie60

P.S. another confusing aspect of testing is that more than one pathogen can react on a certain band. For instance a positive on band 41 could mean either Borrelia or C. Pneumonia. :thumbdown:

Sushi

 

[JAH]

↑
Has anyone done the IgeneX test and turned up negative.

Very good question

I have had both.

 

[filfla4]

Perhaps I have grossly misunderstood but I don't think it is a question of Lyme OR ME/CFS. Please correct me if I am wrong!

I was diagnosed with ME/CFS for 19 yrs in my own country before I managed to get to see one of the leading doctors in the field in Europe. I initially tested negative for Lyme and all along he told me that we need to start treatment to repair my immune function. He said he believed an infection was there but we hadn't yet managed to identify it. I was treated with his protocol, including GcMAF, pulsed abx, high doses of VitB, Nexavir, stomach meds etc, for 1.5yrs. I was then retested and was found positive for Lyme by PCR, confirmed by DNA sequencing.

I specifically asked why I was now testing positive when I had previously been negative. The explanation I got was threefold: (i) the GcMAF and other treatments, had kick-started my immune system to fight the Lyme; (ii) I had been under an inordinate amount of stress, even for a healthy person to deal with; (iii) he was now using much more sensitive testing for Lyme.

I believe that one of the hallmarks of ME/CFS is a compromised immune system, with low NK cells amongst other things. I see the Lyme as another opportunistic bacterial infection in this situation. At the moment, I am being treated for Lyme with long-term abx and I have seen considerable improvement. I don't necessarily think that this will cure my underlying ME/CFS.

Please tell me that I'm wrong!!

 

[Hip]

I disagree with the first sentence vehemently......the attitude that if 'one is not LIVE in a Lyme area' is terribly short sighted.

I think you may have misread the first sentence. This sentence says "you can take into account whether you live in a Lyme area or not". It does not say that whether you live in a Lyme area is an absolute determinant. And obviously your doctor needs to apply this intelligently: if your home is not in a Lyme area, but you regularly take long vacations in the middle of a forested area full of Ixodes ticks carrying the Borrelia bacterium, then yes, you do have exposure to a Lyme area.

The second sentence, that 75% is much higher than studies/reports I have read in the last few weeks regarding the rash

Please can you provide references to these studies you have read.

Mayo Clinic say 60 to 75%, and this Elsevier source says 80 to 90% of Lyme patients had the erythema migrans rash.

 

[Hip]

There is a very nice page on the ins and outs of Lyme testing HERE.

The author of this page points of that the newest lab test for Borrelia is the Advanced Laboratory Services test, which is the first commercially available culture test for Borrelia.

The author notes that since this test actually cultures the Borrelia bacteria, the argument over whether these bacteria persist in long term Lyne disease would seem to be settled, as if you can culture the organism from a long term Lyme patient, this proves the organism is still present in the patient.

I think I read somewhere that the accuracy of the Advanced Laboratory Services test is around 90%, which is pretty good by Lyme test accuracy standards.

 

[vamah]

There is a very nice page on the ins and outs of Lyme testing HERE.

The author of this page points of that the newest lab test for Borrelia is the Advanced Laboratory Services test, which is the first commercially available culture test for Borrelia.

The author notes that since this test actually cultures the Borrelia bacteria, the argument over whether these bacteria persist in long term Lyne disease would seem to be settled, as if you can culture the organism from a long term Lyme patient, this proves the organism is still present in the patient.

I think I read somewhere that the accuracy of the Advanced Laboratory Services test is around 90%, which is pretty good by Lyme test accuracy standards.

I am really interested in the test you mention because I thought the only lab doing this was in germany. Do you have any idea how expensive this test is?

 

[Hip]

@vamah
On the FAQ page on their website, it says $595 for the basic Borrelia culture. Advanced Laboratory Services also have some more expensive Borrelia culture tests listed; I don't know the pros and cons of these various tests.

 

[beaverfury]

A very good round up of lyme diagnostics http://www.ncbi.nlm.nih.gov/books/NBK57026/

 

[roxie60]

I think you may have misread the first sentence. This sentence says "you can take into account whether you live in a Lyme area or not". It does not say that whether you live in a Lyme area is an absolute determinate. And obviously your doctor needs to apply this intelligently: if your home is not in a Lyme area, but you regularly take long vacations in the middle of a forested area full of Ixodes ticks carrying the Borrelia bacterium, then yes, you do have exposure to a Lyme area.




Please can you provide references to these studies you have read.

Mayo Clinic say 60 to 75%, and this Elsevier source says 80 to 90% of Lyme patients had the erythema migrans rash.

Sorry if I have misunderstood. Probably just frustration from hearing doctors tell me since I dont live in Lyme area then testing not warranted.

 

[JT1024]

I have not read this entire thread but the controversy surrounding Lyme is/has been huge. Researchers and physicians are still working the details out. The best example of this is a symposium is being held at Massachusetts General Hospital (MGH) this coming Saturday.
The fact that this is occurring at MGH is nothing short of HUGE!

The symposium is targeting :
MD/DO Infectious Disease, Pediatricians, Psychiatrists, Internal Medicine, Family Medicine, PM&R PhD/NP/PA/RN

Dr. Alan Steere,( http://snips.ly/772484) one of the main authors of the Infectious Disease Society of America (IDSA) guidelines, is employed by MGH yet he is not listed as one of the symposium presenters. The IDSA guidelines were the reason why patients were not given antibiotics. Insurers also refused to pay for treatments and doctors were targeted by insurance companies with law suits. That is why many Lyme physicians stopped taking any insurance and essentially went underground. Almost all of the other presenters/physicians/researchers have presented at the International Lyme and Associated Diseases Society (ILADS) conferences or are active in research and supportive of chronic Lyme.

Full info on the symposium is here: https://www.phscpd.org/Users/PartnersProductDetails.aspx?ActivityID=437
Challenges and Controversy in Lyme Disease and Tick Borne Illness Care Symposium
Saturday, November 9, 2013
8:00 a.m. - 5:00 p.m.
Massachusetts General Hospital
Boston, MA 02114

In the past month the CDC has released new numbers on yearly incidence of Lyme Disease. The new yearly estimate of Lyme Disease incidence alone is 300,000 cases per year, not including other Tick Borne Illnesses. During the past few years a controversy regarding all aspects of Tick Borne Illness care has become a focus of many clinicians and patients. The purpose of the Symposium is to present the recent developments in basic science and help bridge the findings with future clinical approach to patient care. Our goal is to help ensure patients receive the most appropriate care and to help create a fruitful environment where researchers and clinicians will be able to collaborate on new research ideas, projects and patient care approaches.

 

[SOC]

Sorry if I have misunderstood. Probably just frustration from hearing doctors tell me since I dont live in Lyme area then testing not warranted.

No need to apologize. What you pointed out is the way the majority of doctors apply the information about Lyme. As illogical as it is, they claim you can't have Lyme if you don't live in a designated Lyme area. Yes, they should be taking into consideration travel and other factors, but no GP I've talked to about it will.

And the data about predominance of the bulls-eye rash is questionable. More people who have the identifying rash are correctly dxed with Lyme, so you have a biased sample right off the bat. Also, the rash can easily occur in places where it's not seen such as on the back of the neck, on the back itself, or the back of the thighs -- all favorite places for ticks and not readily visible to the patient.

 

[Hip]

I have just been searching for studies on the comorbid conditions that exist alongside Lyme disease, but there do not appear to be any such studies.

The comorbidities of a given disease are the ill health conditions that are statistically more prevalent in people with that disease than they are in the general population.

Since Lyme disease is very similar to ME/CFS, it would be interesting to know if the comorbidities of Lyme are similar to those of ME/CFS, or whether there are a different set of comorbidities in Lyme disease patients.

If there were a different set of comorbidities, this could provide another means to help distinguish ME/CFS from Lyme (in the sense that this could act as another factor in the probability calculation).

The comorbidities of ME/CFS include: irritable bowel syndrome, interstitial cystitis, chronic prostatitis, endometriosis, multiple chemical sensitivity, temporomandibular joint disorder, myofascial pain syndrome, attention deficit hyperactivity disorder, eating disorders, chronic headaches / migraines, Hashimoto’s thyroiditis, prolapsed mitral valve, Raynaud’s disease, and Sjögren’s syndrome (sicca syndrome). 1