posted
You won't find any stats. I and thousands of others were first dxd with fibromyalgia, only to find out MANY years later that it was Lyme.
I've heard estimates that at least 80% of FM is actually Lyme. The rest may be due to other infections or medical conditions.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Our LLMD says that, as well. In fact, he feels that chronic Lyme is actually the Bartonella bacteria that keeps hanging on.
That's his opinion, mind you, and I happen to agree with him on that since my daughter has Bartonella, diagnosed as fibro because they don't know what else to call it.
When I asked him if we should keep our rheumatologist appt, he said, "what are they going to do, give you an anti-inflammatory?". Yep, that's about it!
So, we cancelled, and I wrote a letter to the rheumy what we had discovered, the supporting documents, etc. She was a good doctor, and only doing what she was taught, she was willing to listen when I thought my daughter's fibro was organic.
If she wants to seek further knowledge, it would only serve her better in the long run. I We need to gently educate, but move on if they don't listen. Our dear PCP thinks we are out to lunch.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I was misdiagnosed. A local LLMD has now tested his patients with previous dx of fibro, CFS, etc. and 80% of them tested positive for Lyme. FMS and CFS are both syndromes -- a collection of symptoms that seem to create a pattern that many patients report. I know all the theories, and I don't know why researchers aren't pursuing looking for hidden infections. This could be a huge study in itself.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
Jeff, I tend to think that CFS and Fibro are both lyme, and have for quite some time. My LLMD tends to agree.
I think it will be a long time before we see any accurate studies...first, we have to get them to admit that lyme is a major culprit and needs the study. There is some going on...but not nearly enough.
posted
I know of a new support group in Winston-Salem, North Carolina that reportedly had 30 patients previously diagnosed with fibromyalgia and when tested 28 were positive for Lyme.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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quote:Originally posted by MizMo: I tend to think that CFS and Fibro are both lyme, and have for quite some time. My LLMD tends to agree.
[/QB]
My cousin had been previously dxd with CFS....twas LYME.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
A rheumatologist diagnosed me with fibromyalgia, and I figured that it was a "waste basket" disease. I didn't really believe him, but when my symptoms didn't go away after several years, I went back.
When I started taking Flexeril 5 mg at bedtime, my quality of sleep improved, and alot of my pain and stiffness was alleviated.
An online fibromyalgia support group was helpful, and I read everything I could find about fms.
When a member of the group found out that her problems were due to Lyme Disease, she posted many articles about Lyme. Eventually I began to realize that MY problems may be due to Lyme.
So, I switched from looking for info about fms, to looking for info about Lyme. It took me a while to get diagnosed with Lyme.
The more I learn about Lyme, the more I have come to believe that many chronic health conditions may be due to tick borne infections.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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SForsgren
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Member # 7686
posted
Definitely a very, very safe bet.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
If they diagnose u with fibro or cfs
they dont have to get their hands dirty in the big lyme debate.
posted
I was diagnosed with Fibro and CFS for 19 years before I finally was diagnosed with Lyme. It was the same doctor that said I had Fibro and CFS that finally had me tested at IGeneX. I wish it hadn't taken him 19 years to figure it out!!!!!
The weird thing is that the symptoms are exactly the same, and they recommend the same vitamins and supplements for Fibro, CFS, and Lyme. You don't think it would be that hard for them to figure it out.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
The rheumy I saw diagnosed me with fibro and wanted to put me on two antidepressants, Doxepin and Paxil. I refuse to take Paxil but I do occasionally take the Doxepin for sleep. I haven't been able to sleep since I started lyme treatment.
The rheumy rolled his eyes up when I mentioned lyme.
My llmd says fibro is a "garbage can diagnosis"
Posts: 340 | From Ohio | Registered: Oct 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I went to the hollistic duck last week. And im not sure why he even mentioned this to me...but he was like did you ever have epstein barr virus....i said yes, but never knew that i did it showed up on labs that i once had it.
So he says, I believe it causes CFS. So, if that can cause CFS, why cant lyme cause FMS or CFS for that matter.
I do believe a lot of illnesses are caused by bacteria/lyme.
My horror started last May with a terribly lengthy bought with bronchitis, i havent been the same since.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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My daughter was diagnosed with Fibro and CFS at the age of 14. Our PCP, 2 Rhumie Ducks, 2 ID Ducks and a host of other MD's said she was either crazy or wanting attention and depressed. She had every test known to humans and all were normal.
She took so many drugs I can't list them all.....and got worse and worse.
I finally bullied a Naturalpathic MD into sending her blood work to IgeneX. When it came back VERY positive she said she didn't know how to treat it and would have to read a book?????
That is when I took matters into my own hands, but by this time she had already been misdiagnosed for 14 years. So YES I definately believe that most people with these and other problems really have Lyme.
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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WildCondor
Unregistered
posted
Yes, Fibromyalgia is not a disease in itself but a cluster of symptoms with a cause, like Lyme disease. Same is true for Chronic fatigue, there is always a cause and in a HUGE amount, all of these people have untreated and misdiagnosed illnesses that are really Lyme.
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quote:Originally posted by cantgiveupyet: .but he was like did you ever have epstein barr virus...........So he says, I believe it causes CFS. So, if that can cause CFS, why cant lyme cause FMS or CFS for that matter.
[/QB]
Many of us Lymies once had Epstein Barr. Not unusual at all. Our immune systems go down and the viruses take over. I have it too.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
thats whay my diagnosis was.
They gave me elavil, alleve and a nice pat on the back.
They said that anti-depressants were the only known treatment.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I think it may be a matter of semantics. Both FMS and CFS are "syndromes", and Lyme is a "disease". I looked up both on Med-line Plus (http://www.nlm.nih.gov/medlineplus/mplusdictionary.html):
SYNDROME: A group of signs and symptoms that occur together and characterize a particular abnormality
DISEASE: an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors
Using these definitions, you can have both Lyme and FMS/CFS. This means that my regular doc, who diagnosed me with FMS, didn't misdiagnose me so much as she missed the cause of the FMS.
And like everyone else, now that I've been studying Lyme, it looks like most cases of fibro and chronic fatigue "syndromes" are probably caused by Lyme and related diseases.
Anybody know if there are studies being done on this? Would be VERY interesting to see published results.
posted
fibromyalgia is what they tell you when everthing else is negative thats been my diagnosis for 13 years. Yet my rheum is giving me antibiotic in case I have seronegative lyme.
Posts: 41 | From new york | Registered: Mar 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
erpatti:
Good, I'm glad your doc is doing that. The rheumatologist I saw refused to consider Lyme seriously.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Idiot miss duck said I had fibro within 3 minutes of seeing me and NOT even touching my body. Now thats one SMART duck!!!
But then did a bunch of her 'nerve' tests just to pad her operating cushion. Should have NEVER gone back but I was too dumb to KNOW back then!! I was still grasping at straws those days!!
She's the one that walked in the little room 2 and a half hours later than her appontment time and said I had five words to describe my 'condition'. Then conceeded and let me speak ten instead, cuz she knew 'everything' and I must not have known my rightful name, or much else, according to HER!!!
She would qualify as ONE of the worst ducks I EVER saw!!! Cant remember her name, and dont even want to!!! She wasnt worth the 'flush' to put her in her place!!!
No kiddin' cause I am --just don-- , sore noggin and ALL!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
carol, the only reason my rheum. gave me the antibiotic was because I live in an endemic area, and have pulled ticks off myself. Lyme disease is so common out here. I live in shelter island , long island. I think its the lyme capital of the world.Even though he dx me as fibro 13 years ago I got iv rocephin and doxy . But here I am again, its back everything still neg. I am getting copies I'll post my western blot.
Posts: 41 | From new york | Registered: Mar 2006
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quote:Originally posted by WildCondor: Yes, Fibromyalgia is not a disease in itself but a cluster of symptoms with a cause, like Lyme disease. Same is true for Chronic fatigue, there is always a cause and in a HUGE amount, all of these people have untreated and misdiagnosed illnesses that are really Lyme.
How in the world can you say that!
It is a conspiracy, our government wants us to all die in pain and fog. They want to pay our disability. They dont want us to know the truth. You know they have all the proff they need to say that chronic lyme exsist.
Posts: 208 | From Greenville SC USA | Registered: May 2005
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There is a core group of university-based Lyme disease researchers and physicians whose opinions carry a great deal of weight. Unfortunately many of them act unscientifically and unethically. They adhere to outdated, self-serving views and attempt to personally discredit those whose opinions differ from their own. They exert strong ethically questionable influence on medical journals, which enables them to publish and promote articles that are badly flawed. They work with government agencies to bias the agenda of consensus meetings, and have worked to exclude from these meetings and scientific seminars those with alternate opinions. They behave this way for reasons of personal or professional gain, and are involved in obvious conflicts of interest.
This group promotes the idea that Lyme is a simple, rare illness that is easy to avoid, difficult to acquire, simple to diagnose, and easily treated and cured with 30 days or less of antibiotics.
The truth is that Lyme is the fastest growing infectious illness in this country after AIDS, with a cost to society measured in the billions of dollars. It can be acquired by anyone who goes outdoors, very often goes undiagnosed for months, years, or forever in some patients, and can render a patient chronically ill and even totally disabled despite what this core group refers to as "adequate" therapy. There have been deaths from Lyme disease.
They feel that when the patient fails to respond to their treatment regimens it is because the patient developed what they named "the post Lyme syndrome". They claim that this is not an infectious problem, but a rheumatologic or arthritic malady due to activation of the immune system.
The fact is, this cannot be related to any consistent abnormality other than persistent infection. As further proof, vaccinated animals whose immune system has been activated by Lyme have never developed this syndrome. On the other hand, there is proof that persistent infection can exist in these patients because the one month treatment did not eradicate the infection.
Indeed, many chronically ill patients, whom these physicians dismissed, have gone on to respond positively and even recover, when additional antibiotics are given.
It is interesting that these individuals who promote this so called "post-Lyme syndrome" as a form of arthritis, depend on funding from arthritis groups and agencies to earn their livelihood. Some of them are known to have received large consulting fees from insurance companies to advise them to curtail coverage for any antibiotic therapy beyond this arbitrary 30 day cutoff, even if the patient will suffer. This is despite the fact that additional therapy may be beneficial, and despite the fact that such practices never occur in treating other diseases.
Following the lead of this group of physicians, a few state health departments have even begun to investigate, in a very threatening way, physicians who have more liberal views on Lyme disease diagnosis and treatment than they do. Indeed, I must confess that I feel that I am taking a large personal risk here today by publicly stating these views, for fear that I may suffer some negative repercussions, despite the fact that many hundreds of physicians and many thousands of patients all over the world agree with what I am saying here. Because of this bias by this inner circle, Lyme disease is both underdiagnosed and undertreated, to the great detriment to many of our citizens. Let me address these points in more detail.
UNDERDIAGNOSIS
1. Under reporting: The current reporting criteria for Lyme are inadequate and miss an estimated 30 to 50% of patients. Some states curtailed their active surveillance programs and saw an artificial drop in reported cases of nearly 40%, leading the uninformed to believe incorrectly that the number of new cases of Lyme is on the decline. The reporting procedure is often so cumbersome, many physicians never bother to report cases. Some physicians have found themselves the target of state health department investigators. Finally, to many physicians and government agents rely on the notoriously unreliable serologic blood test to confirm the diagnosis.
2. Poor Lyme disease diagnostic testing: It is very well-known that the serologic blood test for Lyme is insensitive, inaccurate, not standardized, and misses up to 40 percent of cases, yet many physicians, including many of those referred to above, and the senior staff at CDC and NIH, insist that if the blood test is negative, then the patient could not possibly have Lyme. This view is not supported by the facts. Lyme is diagnosed clinically, and can exist even when the blood test is negative.
The Rocky Mountain Lab of the NIH, which is the country's best government laboratory for Lyme research had developed an excellent diagnostic test for this illness nearly 4 years ago, yet further work on it has been stalled due to lack of funding. Incredibly, if not for private donations of just $5,000 from the non-profit National Lyme Disease Foundation headquartered in Connecticut, then this reaseach would have had to be abandoned. An additional $30,000 was donated by this organization to allow them to continue other valuable projects relating to vaccine development and disease pathogenesis. Yet, many physicians believe that thousands of dollars of grant moneys awarded by the government to other, outside researchers is poorly directed, supporting work of low relevance and low priority to those sick with Lyme. In spite of this, their funding continues, and the Rocky Mountain Lab is still underfunded.
3. The university and Government based Lyme establishment deny the existence of atypical presentations of Lyme and patients in this category are not being diagnosed or treated, and have no place to go for proper care.
RESULTS: Some Lyme patients have had to see, as many as 42 different physicians often over several years, and at tremendous cost, before being properly diagnosed. Unfortunately, the disease was left to progress during that time, and patients were left forever ill, for by that time, their illness was not able to be cured. Even more disturbing, these hard line physicians have tried to dismiss these patients as having "Lyme Hysteria" and tried to claim they all were suffering from psychiatric problems!
UNDERTREATMENT
1. Because the diagnosis is not being made, for reasons partly outlined above.
2. University based and government endorsed treatment protocols are empiric, insufficient, refer to studies involving inadequate animal models, and are ignorant of basic pharmacology. They are not based on honest systematic studies or on the results of newer information.
3. After short courses of treatment, patients with advanced disease rarely return to normal, yet many can be proven to still be infected and can often respond to further antibiotic therapy. Unfortunately, Lyme patients are being denied such therapy for political reasons and/or because insurance companies refuse to pay for longer treatment, upon the arbitrary and uninformed advice of these physicians, who are on the insurance company's payroll.
4. Long term studies on patients who were untreated or undertreated demonstrated the occurrence of severe illness more than a decade later, reminiscent of the findings of the notorious Tuskeege Study, in which intentionally untreated syphilis patients were allowed to suffer permanent and in some cases fatal sequelae.
5. The Lyme bacterium spreads to areas of the body that render this organism resistant to being killed by the immune system and by antibiotics, such as in the eye, deep within tendons, and within cells. The Lyme bacterium also has a very complex life cycle that renders it resistant to simple treatment strategies. Therefore, to be effective, antibiotics must be given in generous doses over several months, until signs of active infection have cleared. Because relapses have appeared long after seemingly adequate therapy, long term followup, measured in years or decades, is required before any treatment regimen is deemed adequate or curative.
6. When administered by skilled clinicians, the safety of long term antibiotic therapy has been firmly established.
The very existence of hundreds of Lyme support groups in this country, and the tens of thousands of dissatisfied, mistreated and ill patients whom these groups represent, underscores the many problems that exist out in the real world of Lyme disease. I ask and plead with you to hear their voices, listen to their stories, and work in an honest and unbiased way to help and protect the many Americans whose health is at risk from what now has become a political disease. Thank you.
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posted
Condor, when you say that everyones fibro and cfs is indeed lyme, that is like saying that of the hundreds of religions your religion is the right one. Some one from another religion will believe they are right.
If your statement is true than we do not need abx. Many cfs patients get well in time without any abx.
There is a huge list of illness and injury that can cause cfs/fibro, lyme is just one of many.
Posts: 208 | From Greenville SC USA | Registered: May 2005
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WildCondor
Unregistered
posted
No, not everybody's fibromyalgia is Lyme, it probably is, but is a large number of cases it likely is. My point is that these "syndromes" are BS and have a cause, they need to find the cause. No need for religious attacks, we are all here to support one another.
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