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Old 10-12-2005, 07:38 AM   #1
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Lyme Disease and it's link with FM

Good morning my Fibro Family,
I've often wondered about Lyme disease and it's symptoms which mask FM symptoms. Like many of you, when I was first having symptoms I was tested for Lyme, which came back negative. I found this article online about Lyme Disease and it's link to FM. It is very interesting and something you may want to bring up with your dr.
This article is by Dr. Kent Holtorf. Since it is his article, I've added " " to each paragraph.

Let me know what you think of this .....

"Lyme disease is caused by a spiral shaped bacteria (spirochete) called Borrelia burgdorferi. These bacteria are most often transmitted by tics and mosquitoes. The spirochetes have been called "the great imitators" because they can mimic virtually any disease, which often leads to misdiagnosis. "

"Patients suffering with a chronic illness and especially those with Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue should consider Lyme disease as a contributor.
Patients with chronic Lyme disease most commonly have fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as 'brain fog'. In addition, infection with Borrelia often results in a low grade encephalopathy (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching. It can also be associated with neurological disorders such as multiple sclerosis, dementia, such as Alzheimer's disease, and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). The infection often results in hormonal deficiencies, abnormal activation of coagulation and immune dysfunction, which can contribute to the cause of the symptoms."

"Patients with chronic Lyme disease often complain of 'strange' or 'weird' symptoms that cannot be explained even after going to numerous doctors and often results in the patient being told that it is psychological. Patients are often told that they are hypochondriacs and are referred to psychiatrists and counselors for treatment. "

"Because the symptoms are so variable, most patients are usually not considered for testing or treatment. If testing is done, however, standard tests will miss over 90% of cases of chronic Lyme disease.The standard tests include an immunoassay test of IgG and IgM antibodies and a Western blot for confirmation. The problem with these tests is that they are designed to detect acute Lyme disease and are very poor at detecting chronic Lyme disease. In addition, doctors (infectious disease, internists, family practice, etc.) most often use the Center for Disease Control (CDC) criteria to define a positive test. This criterion was never meant to be used for diagnosis, but rather for epidemiological surveillance (tracking data). "

"If one uses an expanded Western blot with revised requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection of over 90% while having a low false-positive rate of less than 3%."

"To adequately detect and treat chronic Lyme disease, Physicians must understand that standard tests will miss the majority of these cases and standard treatment will fail the majority of the time. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients. "

God bless, Jen

 
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Old 10-12-2005, 09:13 AM   #2
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Re: Lyme Disease and it's link with FM

Thanks for the info Jenn, it was great. I found it very interesting sounds like there are some of us that could be misdiagnosed. Of course that is what we are all fighting for, proper medical care and not being dismissed.

Glojer

 
Old 10-12-2005, 09:35 AM   #3
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Re: Lyme Disease and it's link with FM

Hi Jen,
As I said in another post my lymes test came back negative for having lymes at the time the test was done but positive for having it at some time, my anti body count was very high. My Dr. did put me on ab'c for awhile, which I thought was needless since the dd was not active. She says that I do not have the symtons of lymnes just fm and costo. You get joint swelling, fever etc with lymes and many other things that FM does not cause.
I have been tested for lymes several times and always had a neg report until about 5 years ago. I never had a tick on me. A friend haslymes and she is in the hospital at least once a year on iv ab's.

I have no idea where my test was done but it took about three weeks to come back.

Thanks for the info, Linda
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Old 10-12-2005, 09:42 AM   #4
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Re: Lyme Disease and it's link with FM

Jen, It is funny you bring this up. I had just posted about the CDC's lack of care for chronic illness in "what state do you live in". I dont have a clue if CFIDS/FM and lyme are connected other than the fact that so many people who had lyme are now dealing with CFIDS/FM. Lyme Drs are calling this chronic lyme. Three weeks of doxy will not kill off Bb.

I am no Dr and have no place to say that CFIDS/FM is really lyme or a lyme like illness. However, lyme makes sence. On the oher hand what they say causes CFIDS/FM are things that everyone in this country do, have done or have been involved in. The whole world is not sick just us, and yes there are a lot of us.

If the CDC cared, I mean it is right there in front of them, they would research CFIDS/FM and chronic lyme. We all have the same symptoms although some may hurt more where as some may have more fatigue. To them this means they are totally diferant. Our goverment needs to put the biological warfare on hold and figure this crap out, at least they should open there minds to all the private research being done.

 
Old 10-12-2005, 09:49 AM   #5
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Re: Lyme Disease and it's link with FM

Fm mimics so many diffferent dd, that you have to wonder sometimes if it is all Fm. I know several people who have lymes and they have bad joint swelling, fevers etc, you cannot keep taking ab's to keep the dd under control and I think most lymes sufferers know when they need to go to the dr.

Hugs, Linda
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Old 10-12-2005, 09:59 AM   #6
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Re: Lyme Disease and it's link with FM

Quote:
Originally Posted by pa235
Hi Jen,
As I said in another post my lymes test came back negative for having lymes at the time the test was done but positive for having it at some time, my anti body count was very high. My Dr. did put me on ab'c for awhile, which I thought was needless since the dd was not active. She says that I do not have the symtons of lymnes just fm and costo. You get joint swelling, fever etc with lymes and many other things that FM does not cause.
I have been tested for lymes several times and always had a neg report until about 5 years ago. I never had a tick on me. A friend haslymes and she is in the hospital at least once a year on iv ab's.

I have no idea where my test was done but it took about three weeks to come back.

Thanks for the info, Linda
Linda, the worst thing about lyme is the testing, and the ways Dr's read it. If you have lyme you will always have it. Bb can not be completely eradicated. We have been dealing with lyme since the Mayflower landed. We did not have a name for it until 1975. The Bb that causes lyme was not seen until the 90's.
We are so far behind on this illness it is scary. The tick that carries lyme is the Deer Tick and it is about the size of a period. If you have never been outdoors or never had a pet dog or cat that has been outside then you have nothing to worry about.

 
Old 10-12-2005, 10:20 AM   #7
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Re: Lyme Disease and it's link with FM

I live in the country and am outdoors a lot, we have a dog but my husband sprays the yard with a flea and tick killer. I agree they do not know enough about the test to make a dx, as long as I do not get the fevers and joint swelling I am not gong to worry about it.

Hugs, Linda
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Old 10-12-2005, 10:23 AM   #8
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Re: Lyme Disease and it's link with FM

damz, right on sister. You are so right about the CDC and how they don't link symptoms. They should do more research and maybe get a handle on these things. By the way 'crap' is one of my favorite words, it explains things on so many levels!

Glojer

 
Old 10-12-2005, 02:52 PM   #9
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Re: Lyme Disease and it's link with FM

Quote:
Originally Posted by Glojer
damz, right on sister. You are so right about the CDC and how they don't link symptoms. They should do more research and maybe get a handle on these things. By the way 'crap' is one of my favorite words, it explains things on so many levels!

Glojer
Hey Glojer, I'm a brother. That may change soon due to the fact that my testosterone levels are borderline low.

I had already been dx'ed with CFIDS and saw my Dr. shake her head and wonder what the hell was wrong with me.
She told me I have got a problem because healthy people dont have CMV, EBV, HHV-6 and speckled pattern ANA but all other test were neg. So she called it CFS and sent me to a Rhumy. The Rhumy said I had FM and CFIDS but said FM is very uncommon in men. It just seems to me that no one knows what they are doing yet they are still getting paid. Anyway I went to see a LLMD and tested neg for the third time but tested very positive to babesia. Babesia is a co-infection to lyme.

Wow either my fog is real bad or someone sliped something in my drink. I dont know how all that spilled out when all I was wanting to say was I can see why you thought I was a woman cause fibro normally happens to women.

I guess I better take a nap before the game!

 
Old 10-12-2005, 06:53 PM   #10
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Re: Lyme Disease and it's link with FM

OOPS! Sorry damz I probable knew that but somewhere went a little gender 'goofy'. So let me correct myself...right on brother!

My hubby and I have a very good friend who has terrible FM and he is of the male gender. It is so funny when we get together cause Bob and I can commiserate about our fm which is so odd cause he and my hubby have so much in common otherwise.

Glojer

ps. did you get a nap to watch the game? When last I looked Cards were leading 3 to 0. I try not to watch the whole game it seems when I don't watch they win and if I get too wrapped up in the game they lose so I took a break.

Last edited by Glojer; 10-12-2005 at 06:55 PM.

 
Old 10-14-2005, 08:18 AM   #11
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Re: Lyme Disease and it's link with FM

Quote:
Originally Posted by Glojer
OOPS! Sorry damz I probable knew that but somewhere went a little gender 'goofy'. So let me correct myself...right on brother!

My hubby and I have a very good friend who has terrible FM and he is of the male gender. It is so funny when we get together cause Bob and I can commiserate about our fm which is so odd cause he and my hubby have so much in common otherwise.

Glojer

ps. did you get a nap to watch the game? When last I looked Cards were leading 3 to 0. I try not to watch the whole game it seems when I don't watch they win and if I get too wrapped up in the game they lose so I took a break.
Glojer, are you saying that your husband is sick with fibro too? If so you need to type ******* into your search bar and tell them your story and symptoms. All you have to do is go to flash discussion and join the group. I know there is a lyme dr. in your area.

 
Old 10-14-2005, 11:38 AM   #12
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Re: Lyme Disease and it's link with FM

No damz my hubby does not have fibro, he has a seriously bad lower back and now his cancer sorry if I worded that wrong. Our friend Bob has fibro but his wife Doris does not and I was just commenting on how usually the women have more to talk to each other about and in our case when we get together with them Bob and I can relate because of our fibro but he and my hubby have so many other things in common having been in the same business and all. Bob and I sometimes monopolize the conversation with our fibro, but we soon shut up. Hope you are having a good day.

Glojer

 
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