posted
Someone on my forum wrote this because a lot of us are being diagnosed with Lyme at the Fibromyalgia and Fatigue Centers. I would love to hear what your responses are to this since you guys know a lot more about this than I do:
The CFS/Lyme Diagnosis Controversy 12/01/05 01:24 PM
Lately, I've seen a TON of posts about Lyme Disease on these forums and it has led me to believe that not only do many of you fear that you have Lyme Disease, you might also feel that it is the actual disease you are suffering from. Not only are the diagnostic tests for Lyme Disease not reliable as they can result in both false positives AND negatives, there are NO reliable diagnostic tests for Chronic Fatigue Syndrome (CFS) and it must be made upon exclusion of all other possibilities. When discussing Lyme Disease, not only is the Bull's eye rash not seen in 25% or more, an alarming majority of individuals don't even recall a tick bite.
These things only complicate matters further. People are left to wonder, "Then what do I really have and how do I know for sure?" Well, in an attempt to eliminate possible confusion, I've decided to piece together here as best I can an overview of how to distinguish between CFS and Lyme Disease. I've also decided that I'm not going to make any references to studies as I feel that it will only add to the confusion and the conclusions drawn from them can be easily misinterpreted.
To begin, I want to examine the symptoms of a 'typical' case of Lyme disease versus that of CFS. Both illnesses can involve a 'flu-like' origin, fatigue, joint pain, cognitive difficulties, mood disturbances, sleep problems, neurological complications, and so forth. Many feel that since the symptoms are so similar in nature that it could be impossible to distinguish the two. The obvious things being the classic Bull's Eye Rash and the sometimes present Bell's Palsy (facial numbness) which are high indicators of a Lyme Disease infection, but there are some very important factors that I feel are often overlooked.
First, The 'hallmark' symptom of CFS is not fatigue, but rather post-exertional malaise. While fatigue is the most common complaint of CFS sufferers, it is not what helps distinguish it from other illnesses as many conditions could result in fatigue. Post-exertional malaise involves a sickness reaction following stressful or strenuous activities such as exercise that can last for days to weeks following. This IS NOT the same as exercise intolerance which resembles more of a post-exertional 'fatigue'...rather, those who suffer from post-exertional 'malaise' actually experience an almost flu-like reaction to exertion that tends to increase the severity of all symptoms, including those involving fatigue and mood. While Lyme Disease sufferers may experience easy fatigueability with exertion, post-exertional malaise is quite unique to CFS.
With this being said, I need to mention that ANYONE diagnosed with CFS and DOES NOT experience post-exertional malaise should SERIOUSLY consider another diagnosis. Without suffering from post-exertional malaise, a diagnosis of CFS should be HIGLY suspect.
Secondly, a very common complaint of the Lyme Disease sufferer is arthritis. Typically, it is seen in joints like the knees and hips. Of course, many people suffer from arthritis and obviously not everyone who suffers from arthritis has Lyme Disease, but when it is of such a sudden onset and accompanied by other typical Lyme Disease symptoms, it is a MAJOR indicator of the infection. This is typical of Lyme Disease, but not of CFS patients. While CFS patients can and do suffer from joint pains and such, they are rarely of the abrupt severity as that of Lyme Disease.
I must note that if a suspected CFS patient has or does suffer from such an intense and abrupt case of arthritis, I would seriously reconsider a Lyme Disease diagnosis and treatment first. The opposite, however, is also true...if you were diagnosed with Lyme Disease and DIDN'T suffer from these arthritic pains, I would highly question this diagnosis as well.
Next, we must consider that it is VERY possible that a patient may suffer from all the `classic' signs of CFS including post-exertional malaise and then ALSO have a positive Lyme Disease blood test...what does a person do then? In this case, you will have to attempt to distinguish between an active, late stage case of neurological Lyme Disease and what appears to be CFS...There are two ways this can be done and neither of them is totally reliable. The first would be the have a sample of cerebrospinal fluid measured for the presence of Lyme Disease antibodies and/or bacteria (antigen). If they are present and/or the antibody titers are elevated in comparison to the blood test, then a positive neurological Lyme Disease diagnosis is suspected. The other way would be to attempt the proper antibiotic treatment for a neurological case of Lyme Disease which almost always involves either high doses of oral/IV Doxycycline or IV Rocephin and see if the patient benefits from them.
The controversy still remains, what about those patients who are suspected of Lyme Disease despite what the blood/cerebrospinal fluid test results may indicate, but fail to respond to antibiotic treatments? What does this prove if anything? Many researchers will refer to this as either a misdiagnosis or an ill-defined Post-Lyme Syndrome, but many are not willing to except these conclusions as they leave too many unanswered questions. Could this patient require longer treatments? Should different medications/treatments be attempted? Could the tests have failed to diagnose? These questions are inevitable and will invite many to go ahead with long courses of antibiotic treatments despite negative tests and continue on them for months to years even if no positive benefit is found. Is this right or wrong? Well, it's a matter of risks versus benefits...Simply put, if the risk of continuing therapy outweighs any possible benefits achieved from them then the answer is no. If some benefits are noted and the risk of complications remains low, then longer courses may be warranted. Unfortunately, there are no surefire ways of knowing this as of yet. This will ultimately require each case to be treated on an individual basis with the mutual consent of the treating physicians and the patients.
In conclusion, I feel that attempting courses of antibiotics in a highly suspected case of CFS is not without merit. Many CFS patients have noted improvement while on medications such as Doxycycline despite having no confirmed presence of a Lyme Disease infection. This could mean that the medications are capable of doing more for the immune system than was previously thought to be true or they could be targeting other undetected infectious processes such as Mycoplasma. Of course, there is a theory that the Lyme Disease infection is a possible trigger for CFS which means removing the infection does not cure the condition. This is still being investigated as a possibility, but perhaps we will never know the true nature of CFS until all is understood about Lyme Disease...or perhaps the opposite is true in that when we finally understand all there is to know about CFS that the controversy around Lyme Disease is finally put to bed.
Posts: 686 | From Northeast Georgia | Registered: Sep 2005
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posted
If you want CFS, continue to visit those that dx and treat CFS. If you suspect lyme go to a LLMD for dx and treatment. I doubt either specialist knows much about the others work.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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posted
Sorry..I think I might have ranted a bit here...but thank you for that article...I am so glad this is being talked about.
I am so happy that the word is getting out to CFS/Fibro communities, even if there is confusion.
The thing about CFS and Fibro for me, is that the official, western medical understanding is that not a thing is known about what causes it. It is not known why it happens. Treatments are palliative at best.
With this huge "mystery", how can anyone be sure whether or not CFS is actually Lyme, TBD's, etc?
When I think of "Lyme", what it really means to me is "a collection of varied but similar measureable, known diseases (such as strains of borellia, erlichia, bartonella, babesia, mycoplasma, c difficile, staph, candida, etc) as well as possible infection with as yet unknown pathogens". So I have a very broad definition of Lyme that I am working with.
So my personal opinion is that anyone with CFS, Fibro, MS, etc. has Lyme as defined above.
These so-called exclusionary diseases (meaning "garbage can diagnoses" straight from the lips many doctors) are merely a convenient name for a collection of diseases that is being masked by the term "syndrome".
(Even scarier are the implications when we are told it's a psychiatric issue...which happens often and is medicated for often).
Yes...testing for Lyme disease is wildly inaccurate...UNLESS you do a test where you can actually *see* the spirochetes squiggling around in your blood (Bowen) or take the only known reliable Western Blot (Igenex) where the blood is handled properly and the test run reliably.
How many of us Lymies were diagnosed CFS/Fibro? It is a staggering number. How many CFS/FibroLymies have recovered using antibiotics? Certainly this mountain of anecdotal evidence is worth pause.
I think that the sooner that it is made known that the chances of CFS/Fibro being INFECTIOUS diseases are extremely high, the sooner sick people everywhere will begin to realize a standard of care that rises above its current abysmal state.
Also, once this story gets blown, perhaps our wonderful, hard working, determined and honorable doctors and nurses will stop being persecuted by a byzantine medical community and greedy insurance companies.
I have had post-exertion malaise or whatever it's called. I have all the classic symptoms of CFS. I have had several doctors try to tell me that I had CFS or Fibro. (In fact, SO many people in my area have "CFS/Fibro" that my doctor's office has stopped seeing patients individually for it and is now holding seminars)
But what I tested poitive for was Lyme Borelliosis and Bartonella. I had two tests done. I highly doubt that they were wrong.
Just because many of the tests for Lyme are inaccurate (ELISA, et al) does not mean that people don't have Lyme. And by the way . . . isn't it interesting that such a vague syndrome is a very recent development in our human history?
Lastly, I find it hard to believe that a "syndrome" sych as CFS or Fibro is SO mysterious and unknown that no one in the medical community seems to know anything about it, even though that's what most doctors tell us.
I know why I am sick. I have been infected with an infectious disease. What I find highly suspect is that more is not being done to illuminate the nation/world about this epidemic that is affecting so many people and little children.
Hours of press on the Asian Bird Flu that *might* happen, and there is a nation full of hundreds of thousands of people who are ill with an infectious disease and don't know it. And no one wants to talk about it. I know it's scary for people with CFS to think that they might have an infectious disease.
But at the very least, it costs very little in the grand scheme of things to get a Lyme test through Igenex or Bowen.
I did not want to believe I had an infectious disease, that seemed too sinister to me. But I did my research, took the right tests, and met lovely people and used common sense, and I believe. Oh, I believe.
End of rant...lol
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
CFS- a cluster of symptoms without a know cause Lyme- a bacteria infection treated with antibiotics.
It seems to me you are trying to compare apples to oranges here.
Tests for lyme are often not sensitive enough. Many negitives may indeed be infected. A positive is a positive. DNA and antibodies don't just appear out of nowhere.
Posts: 1572 | From Pa | Registered: Jun 2001
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Here's the response I received as I quoted some of what you said:
"A POSITIVE IS A POSITIVE! DNA and antibodies don't just appear out of nowhere."
I wish it were true, Karatelady, but unfortunately it just isn't the case. False positives can and do happen because either
1.)Other infectious illnesses such as Syphillis or EBV can cause a cross-reaction by creating extremely similar antibodies that the tests aren't specific enough to distinguish between
2.)Laboratory cross contamination errors can be made
3.)A person may have been exposed to Borrelia Burdorferi at some point earlier in life, never contracted a single symptom, created antibodies against the bacteria, and defeated it. Sometimes these antibodies will remain present in your blood for a lifetime despite no active infection.
Until the tests become more specific, which researchers are constantly working on, there will always be some amount of ambiguity in diagnosing a Lyme Disease patient. On a further note, there is currently no test for a cure either.
Posts: 686 | From Northeast Georgia | Registered: Sep 2005
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Just some thoughts on the response. Again I am so glad these questions are being asked...just having them asked opens up so many arenas of communication and understanding. Even to consider the possibility is grand.
1. How many of us likely are infected with Syphllis, a bacteria similar to borrelia except that it is much more easily eradicated by antibiotics? I think that the chances of this happening are logically quite low.
It is my understanding that syphllis is easy to cure (relatively speaking) with short course antibiotics. If we all had it instead of Lyme, we'd be better very quickly. So Syphllis doesn't make sense to me.
The Western Blot has very specific bands in relation to Lyme. I believe Band 66, 41, and especially band 39 are Lyme-specific bands.
Also, Epstein Barr is a virus, not a bacteria and I believe the antibodies produced are different. Or different enough.
But, say that these similar antibodies *did* react with a test...well who's to say that CFS isn't caused by syphllis or EBV? That would still make it caused by an infectious disease. Another thought.
2. Laboratory cross-contamination errors can be made.
Yes, absolutely. However, and I speak from direct experience here, labs are very careful about this. Extremely careful. That is why they have precautions, procedures, and protocols, as well as Quality Control departments. I used to work in a commercial lab. If you have hundreds of people showing positive, chances are it's not an accident. Re-testing is always an option and worth it if you think the lab is wrong.
We have to look at the large amount of anecdotal evidence whereby sick people are testing positive for Lyme. We also have to look at the overwhelming amount of false *negatives* which seem to be occurring, rather than false positives.
We have to examine the nature of the false negatives...which is due to the nature of the spirochete itself being able to wear the genetic material of different cells and avoid detection. To me, this makes the chances of Lyme being UNDER-diagnosed much greater than being over-diagnosed.
3. I totally agree with you on this one. That is one of the thoughts behind so many positives with the Bowen test. It could very well be in my opinion that a huge part of the population is infected with Bb, and maybe only people who are prone (i.e. immune compromised or with genetic proclivity) to an active infection present with symptoms. But again, if this was true it still means that people with CFS can have Lyme. It doesn't negate that possibility.
But when you study the cell wall deficient and clever activities of the spirochete, you can actually see the damage that it does. This is not a passive buggie.
Not only that, but the co-infections are much less controversial and are present and testable in people who are actively sick. It could be Lyme in combination with other pathogens, but still be infectious in nature.
My vote is still with CFS being an infectious disease rather than a mysterious syndrome.
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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posted
Well, I happen to have hit the jackpot in a sense. My internist actually specializes in Chronic Fatigue Syndrome and was named one of Wash D.C.'s top doctors because of that specialty. However, he is the one who has diagnosed me with Lyme (did the CD-57, Igenex, etc.). In my case he does know something about both afflictions, so I will note to ask him what makes him think I have Lyme vs CFS. I was actually diagnosed years ago with Fibro so I think it is a fair question to ask. I will report his response. I don't go back for three weeks so don't think I have forgotten if you don't hear back for a bit.
Posts: 331 | From virginia | Registered: Nov 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Yes, another bacteria or virus could perhaps cause similar antibodies. Certain bands are supposed to be lyme specific, so I'm not sure how antibodies could be caused by something else. Bacterial infections should be treated in any case, not sure what is done for viruses other than the common cold.
2. Lab error is less common than you think. If labs were making frequent errors, there would be problems on other tests and insurance companies would refuse to pay for shoddy work, the labs would lose their contracts and would go out of bisiness.
3. Earlier exposure would be a valid reason for continued antibody response. This of course begs the question, why would you test for lyme if you had no symptoms. So, if you have symptoms and a positive result the best course is to treat with abx and look for improvement as evidence of a bacterial infection.
I continue to believe that symptoms with a positive lab result is lyme. Positive bloodwork isn't required for diagnosis, lyme is to be clinically diagnosed for all the reasons already discussed.
We can fight about who has what. The sad truth is that pain killers and steriods won't cure anybody of anything and we are still struggling to find the right combo of abx and other drugs to get this monkey off ours backs before it kills us.
Posts: 1572 | From Pa | Registered: Jun 2001
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Of course! You can use whatever you like, I'm happy if it helps. I have no idea where my loquaciousness has sprung from...susally I'm too tired to even type a sentence...so I just ran with it...
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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WildCondor
Unregistered
posted
What everyone needs to realize is that chronic fatigue, fibromyalgia, and arthritis are not diseases by themselves. Of course, they are real, but they are symptoms, not diseases. If you go to the doctor, and complain of being tired all the time, for 6 months or more, you are probably going to be diagnosed with chronic fatigue. Being tired all the time vs. post -exertional malaise is still the same thing.
You have to use common sense here. You have a symptom, and when you are told you have CFS, you are being diagnosed with a symptom. It makes no sense! You need to find out the cause! Lyme disease, and the bacteria b.burgdorferi is a main cause of the chronic fatigue (CFS). People join chronic fatigue support groups, they go on disability, they tell their family "I know what's wrong with me now, and I have chronic fatigue, or I have CFS."
I still find it amazing just how many people get sucked into this giant conspiracy and line of thought. None of it makes any sense, yet we are so happy to have a diagnosis, we accept it. Meanwhile a cause is not found, and the person is left with an undiagnosed and untreated infection.
Many thousands of people believe they have fibromyalgia, chronic fatigue syndrome, depression, multiple sclerosis and more, and still they have no idea what the cause is.
Wake up people and think with your brains! Normal, healthy people do not just suddenly come down with MS, or are exhausted all the time for no reason, there is always a cause. Do not buy into the word syndrome either; it is just a word for a collection of symptoms for which the doctors label a syndrome because they have no idea what is wrong with you. The same thing is true for treatment of diseases. People seek out a cure, and what they get is not a cure, but medication to treat the symptoms. An example of this in Lyme disease is anti-inflammatory drugs, NSAIDS, or steroids prescribed to treat painful joints. The medications will work on the symptom, the pain, but the cause of the pain goes untreated.
The smart treatment would be antibiotics, which directly kill the cause, plus supportive prescriptions to treat the symptoms and make the patient more comfortable. Therefore, in the previous example, the patient benefits from treatment aimed at the cure, plus they get symptom relief. Seek the cause people, always seek the cause.
In my story, I set out for a diagnosis, and treatment for my cause. I was mis-diagnosed with CFS, CFIDS, Fibromyalgia, all the same things. I heard the previous responses from so many different doctors and medical staff that I have lost count of them all. I was told repeatedly that I was crazy, in perfect health, depressed, have chronic fatigue and that I could not possibly still have Lyme disease. It is all one huge Lyme conspiracy. SEEK THE CAUSE! TREAT THE CAUSE! USE COMMON SENSE!
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posted
Sandy, I 2nd everything stated in your post, I couldn't have said it any better, very informative, concise and to the point. I'm in aggrement..................
Posts: 97 | From Tennessee | Registered: Nov 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
The original post can be found here for anyone wishing to respond directly to the poster in that forum. I may do later, but don't have time now.
Edited to add, I have responded to Lamotta and also posted the Dr. S and Dr. B "Point Counterpoint" document, which should help clarify things for those confused.
posted
Wasn't Lamotta banned form Lymenet? She/he makes me nervous. Every post is against LD and the information she gives out resembles Quackwatch info.
I am not sure why the negative posts constantly, but so many memebers on the forum are asking questions and getting tested for LD. Then Lamotta comes along and gives out this "information".
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Yes she definitely has an anti-Lyme agenda, whatever the reason for it. (personal? maybe not)
It is one thing to choose to not pursue/invetigate Lyme for oneself when a diagnosis of CFS/FM has been given - but she actively tries to stop others questioning their CFS or getting assessed for Lyme.
Therefore, I have posted one of my favorites "Point, Counterpoint" by Dr S and Dr B on there, which hopefully still clarify things for anyone confused by Lamotta's efforts.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
Thank you dontlikeliver and fogged up for trying to keep things so informative and positive on the other site, it is great information and I dont understand Lamotta77's agenda but it is frustrating me.....the only reason I go to that site still is to try and get those who have not been tested to seriously consider it...
I truly beleive that CFS and FMS are either LYME (undiagnosed), or other infections, bacterial, viral, or some kind of defficiance...but you just cant make everyone understand that...
This site has been such a wealth of information....I dont usually post here I get all my questions answered from reading everyone elses replys....But thank you all for your support (even though you didnt realize you were giving it since I never even log on....but thank you...Jill
Posts: 83 | From Northern Illinois | Registered: Feb 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I also got the CFIDS ,FMS,depression label. But when I started on my first course of ABX back in 1986 I got better.Not only did I get better I herxed the entire time.Still do infact.
If CFIDS is an immune respose like they say and not an active infection why not just put CFIDS patients on one month abx say doxy 400 mg and see what happens.I mean you can go to a dermataolgist and he will put you on abx for pimples for crying out loud!!!!!!!!Why don't they try this aproach?
My sister had an infected breast and had IV for 3 months.She didn't herx or feel any thing out of the ordinary.Never skipped a beat felt fine. Same with my husband.A month on high does of mino and felt fine! Not a single problem.
Now every other week when I take my abx I get horrible head pressure and a long list of herxing.Head pressure is NOT in the side effect for either meds I take.
If people take one month of oral abx high enough in concentration and they herx you can bet the farm they most likely have lyme.What do they have to loose?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Like VaChick, my husband's doc is also well recognized as a CFIDS specialist and when the Igenex tests he ran (finally, after 3 years of CFIDS treatment) came back positive, he said that the diagnosis could no longer be CFIDS as that 'syndrome' is a "rule out diagnosis." i.e when you rule out everything else, then CFIDS is the only thing left.
I take this to mean that you have the diagnosis of CFIDS until you have a positive test result for something else.
Based upon that definition of CFIDS, if you have another disease that accounts for your CFIDS symptoms, then you no longer have CFIDS, you now have this new disease.
For my husband, this 'new' disease is Lyme, and I know it sounds weird, but we LOVE this diagnosis, because there is at least a positive test (vindication to the non-believers that my husband actually has a 'real' disease), an actual cause (a named infective agent), and treatment that can help (as opposed to the "well, maybe you will get better and maybe not, and who knows when that may or may not happen" prognosis that was give with the CFIDS diagnosis.)
I know that the CFIDS/ME/Lyme controversy can be a very personalized agenda, but this is just my view, FWIW Posts: 31 | From Arlington, VA USA | Registered: Aug 2005
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