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Old 03-08-2005, 02:28 PM   #1
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Lyme Disease and Fibro?

I am doing research as to why a basically happy person like myself could have this awful pain in my neck, back, shoulders and hips. I found certain threads on both the Fibro board and the Lyme board that detail the symptoms that I have. I have burning pain in my neck, back, shoulders. On the Lyme board there is a post about lips being cracked in the corners and on the fibro board, someone mentions muscle twitching. I have both of these symptoms as well.

Last edited by Administrator; 09-05-2011 at 12:52 PM.

 
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Old 03-08-2005, 03:17 PM   #2
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Re: Lyme Disease and Fibro?

Hi Hatefibro,
I posted on the Lyme board about this same connection. I have a Lyme disease specialist treating me for Lyme because she believes everyone with a dx of fibro should be trial treated for Lyme just in case it's Lyme. My homeopath has dx'ed me with Lyme.
I'm not on antibiotics, only natural remedies. So far, not much change, but it has only been a few months and is supposed to take a while.
I'll keep you posted.
Suzi

 
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Old 03-08-2005, 03:24 PM   #3
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sleepytee HB Usersleepytee HB User
Re: Lyme Disease and Fibro?

Quote:
Originally Posted by hatefibro
I am doing research as to why a basically happy person like myself could have this awful pain in my neck, back, shoulders and hips. I found certain threads on both the Fibro board and the Lyme board that detail the symptoms that I have. I have burning pain in my neck, back, shoulders. On the Lyme board DR. Steven Phillips mentions about lips being cracked in the corners and on the fibro board, someone mentions muscle twitching. I have both of these symptoms as well.
I have fibro and suspect Lyme; and have recently developed Painful cracked lips; where is Dr. Steven Phillips post; like under what question. I'd like to read it.
Thanks, Tammy
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Wishing you all lots of good days....in a row.
Tammy in SC

 
Old 03-09-2005, 08:41 AM   #4
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bilij HB User
Re: Lyme Disease and Fibro?

Goodmorning folks, Is there no cure for Lyme disease? Most of
the people who write about the disease only say it's ''suspected.''
Isn't there a definite diagnosis and regimen of treatment that cures
Lyme disease? I've been out of nursing almost 5 years and things
change so fast I'm afraid to say anything for SURE. I'd really like
to understand about this problem. Wishing you all a sunny day.
Bilij

 
Old 03-24-2005, 10:37 PM   #5
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Re: Lyme Disease and Fibro?

Hi I'm new here! Not so new to Fibro or Lyme. Have had Fibro for 20 years and recently (november/04) discovered that I have chronic Lyme. Have been on oral antibiotics since. Within days of starting treatment I noticed vast improvements in fatigue and pain levels. Had first herx on day 8, which is a good sign as it confirms the diagnosis of lyme.

Lab tests are unreliable but the more I learn about this disease the more I realize that my Fibro symptoms are really lyme symptoms. Although Lyme is hard to cure it is curable or so I am told, unlike Fibromyalgia.

I do wonder about sleep issues though. Has anyone come up with a reliable way to sleep the whole night?

Sue

 
Old 03-25-2005, 08:57 AM   #6
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Re: Lyme Disease and Fibro?

hi all! i often wonder about lymes. but i havent heard of it before here and doctor or neuro hadnt mentioned it. im in uk. it is a worry though, lymes, love april x

 
Old 03-25-2005, 10:49 AM   #7
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Re: Lyme Disease and Fibro?

What I know about Lyme is that if you get an immediate diagnosis, treatment is very successful. Very few people that contract Lyme know or suspect they have it right away. Then if one thinks they might have Lyme, and go to the doc, they will have a difficult time trying to get most docs to even test for it. When you do, the standard test isn't always reliable. Lyme mutates. It often does not show up on a test even tho you have it. Once you've had it for a long time, and are lucky enough to go to someone who really understands Lyme, treatment at that point is much more difficult. The National Institutes of Health has developed a loop of 4 things (I remember only 3) that are responcible for most problems sick people are having.
Epstein-Barr - Lyme - HHV6 Herpes Virus and the fourth. Mircoplasma infection plays a part in this too. You will notice that all these viruses have almost all the same symptoms. So people with fibro may all have the same symptoms, but have different root problems. No one is going to get any better until they get to the root problem of their fibro. This is very difficult because as it was explained to me, very often the fibro patient has more then one virus going on at one time, which is a challenge to detect and treat.

 
Old 03-25-2005, 02:46 PM   #8
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Re: Lyme Disease and Fibro?

Lyme is not a virus it is a parasitic infection caused by the bite on an infected tick. Infected ticks can be found all over the world. So therefore you can develop lyme anywhere in the world.

 
Old 03-25-2005, 03:04 PM   #9
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Re: Lyme Disease and Fibro?

bncfd,
You are right, I stand corrected! Might explain why it's so difficult to treat.

 
Old 03-25-2005, 08:40 PM   #10
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Re: Lyme Disease and Fibro?

This is why I am not sure which direction I should push my Dr. in next. I am tired of treating symptoms and not knowing a cause for them. I hate taking so much Ibuprofen for pain but I do not tolerate other pain meds well. I actually do cycle through good and bad times though which makes me wonder if it could be fibro since most people here seem to have horrific pain on a daily basis. Whereas I can go for a couple days without the pain being so bad that I need meds. but I am almost always fatigued. Wonderful to live in a society where you practically have to diagnose yourself. It seems like if it isn't heart disease, they don't wanna know about it.

 
Old 03-25-2005, 09:46 PM   #11
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CFD 333 HB User
Re: Lyme Disease and Fibro?

Quote:
Originally Posted by bcnfd
Lyme is not a virus it is a parasitic infection caused by the bite on an infected tick. Infected ticks can be found all over the world. So therefore you can develop lyme anywhere in the world.
Lyme Disease is actually a bacterial infection, not a virus nor parasite, transmitted most commonly by a tick bite, is diagnosed partially by a positive ELISA/Western Blot blood test and clinical diagnosis (most commonly by the presence of a bullseye rash) and normally treated with antibiotics for 1-2 months. By far the most common symptoms of Lyme Disease are, in fact, a bullseye rash, sudden arthritis pain in the hips and/or knees, and flu-like symptoms.

The thing I'd like to mention is that Lyme Disease is fast becoming a "fad" diagnosis. You speak to certain people about it and suddenly its this "mystery" disease whose symptoms could mimic any disease on the planet....arthritis pains? Must be Lyme Disease!....tired all the time? Must be Lyme Disease!...anxiety and depression? Must be Lyme Disease!...see my point?

In fact, because the standard blood test for Lyme Disease only measures antibodies and not the actual presence of the bacteria, the cloud of hysteria only thickens! These so-called "Lyme Literate Doctors" that people go see can convince almost ANYONE that really has Fibromyalgia, CFS, Rheumatoid Arthritis, Lupus, or MS, etc. that whether or not you ever had a bullseye rash or tick bite and whether your blood test was positive or not you need to be on antibiotics immediatly and maybe for years! Its a shame really what they can do to you...Most of them don't except insurance so people get robbed! I've heard stories of people having to sell there homes to pay for the IV Rocephin injections they never needed in the first place! No lie! My infectious disease doctor told me all about this scam. Whats worse is they may actually have something even more serious and it goes undiagnosed for years!

Another thing about the relationship between Fibromyalgia/CFS and Lyme Disease is that there is suspicion that a Lyme Disease infection may precipitate Fibromyalgia/CFS although there is no proof of it yet. This infection, along with other things like stress, genetics, viral infections like EBV, may all be co-factors that cause these debilitating, incurable illnesses to happen but the jury is still out on it. If a Lyme Disease infection is suspected by a REAL Infectious Disease Specialist in someone with Fibro/CFS, it should be treated, but the studies show that repeated antibiotics does very little if anything to improve a true case of Fibro/CFS. The infection may be gone, but the condition remains behind...Unfortunate but true.

I, myself, have been in this particular situation so I can go on forever about it.

P.S. I forgot to mention that I know a woman personally that was put on Doxycycline for 2 years by a so-called "Lyme Literate Doctor" and it did nothing for her...she really had Chronic Fatigue Syndrome that eventually resolved on its own after 5 years...In a way, she's a lucky one! Could have been worse! At least the Doxycycline was cheap and her insurance covered it!

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Old 03-25-2005, 11:21 PM   #12
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Re: Lyme Disease and Fibro?

In researching Lyme disease and the other co-infections that are caught by the bite of an infected tick the words bacteria and parasite seem to be interchangeable. As it lives off of us I refer to it as a parasite.

In regards to treatment with antibiotics a treatment of 6 weeks is needed when the Lyme is treated within days of the bite. Within two months of being bit one enters the stage known as chronic Lyme. Treatment with antibiotics then takes up to 3 years depending on severity and how many other co-infections the person has. Due to the fact that the Lyme Spirochete morphs or becomes resistant using the same antibiotic for extended periods is useless.

The list of symptoms has 73 different items and while the bulls eye rash is a definite indication, not all people exhibit or notice this rash. While for the most part Lyme disease is diagnosed by clinical observations a true test would be the herxheimer reaction that is experienced when the spirochetes are killed off by the appropriate antibiotics. This reaction happens within 7 to 10 days of starting the antibiotics and is an exacerbation of the previous symptoms with the pain levels skyrocketing as the body deals with the toxic overload caused by the die off.

I have personally been dealling with a chronic lyme infection since November and while I may be a newbie at this I am a researcher at heart and have read everything I can get my hands on. I continue to discover what i can and am fortunate to have a Lyme Litereate Medical Doctor (LLMD) treating me.

As for Lyme being a Fad diagnosis, they say the same about Fibromyalgia and Chronic Fatigue. Lets face it the medical community still has a lot to learn about man and what ails us.

 
Old 03-26-2005, 08:24 AM   #13
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kbak HB User
Re: Lyme Disease and Fibro?

Lamotta and Bcnfd,
I think your both right. Looking at Medline and Pubmed, Lyme is Borrelia Burgdorferi, which is a parasite which gets into bacteria in the host animal. So it's really both. NIH certainly sees it as a big problem. This is a huge complex thing, so its no wonder people have such a hard time getting a correct diagnosis. I don't think all Lyme docs are hype. Its just when you go to a Lyme doc your probably going to get treated for lyme and not fibro. But then again what is fibro? Its not a disease in itself. Its defined as a syndrome. Fibro just consists of a lot of people with the same symptoms, which doesn't mean they have the same root problem. I don't think there will ever be one treatment that fits all. I think these nasty bugs effect us all on an individual basis. We need docs that don't treat in a herd fashion, but try to tailor treatment designed for you. It certainly is easier for them to treat en mass. Much more time consuming to work with you as one. So this just puts us in a huge struggle to try to feel better and do better. I don't think we will ever find easy answers.

 
Old 03-26-2005, 08:38 AM   #14
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Re: Lyme Disease and Fibro?

Jeremy,

If you find a clinic that looks promising, then I would talk to them on the phone. That will tell you much about them. If their willing to spend time sitting and talking with you and answering your questions, that's a positive sign. I have a friend who called such a clinic and was told that they wouldn't talk to her only to her doc. Needless to say, she checked them off her list. I understand your frustration.

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Old 03-26-2005, 11:54 AM   #15
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Re: Lyme Disease and Fibro?

Kbak, I agree with you completely!

 
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