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Adrienne Dellwo

Lyme Disease in Fibromyalgia & Chronic Fatigue Syndrome

By July 7, 2011

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If you're well enough to brave the hot weather, you need to be on alert for more than sunburn and heat stroke -- you also need to watch for ticks.

Ticks cause Lyme disease, which has a lot of symptoms in common with fibromyalgia and chronic fatigue syndrome (ME/CFS). Some doctors believe Lyme can trigger ME/CFS, but this is controversial. What we do know, however, is that Lyme's effect on the immune system is very similar to ME/CFS.

Even a healthy immune system can't defeat Borrelia burgdorferi, the bacterium that causes Lyme disease, but it tries really hard. That means the immune system switches into overdrive and starts attacking everything it can -- your joints, your organs, and your nervous system. Chronic immune activation depletes the body's resources as well. Some doctors say Lyme disease is frequently misdiagnosed as fibromyalgia or ME/CFS because they're so hard to tell apart.

In ME/CFS, the immune system is chronically activated, but so far there's no widely accepted explanation for why. While it's not as common a belief, some researchers do suspect infection may be behind some cases of fibromyalgia as well, and we know fibromyalgia involves immune system dysregulation.

I recently heard from a man I used to work with who's always been extremely athletic and outdoorsy. He was a big strapping guy with a booming voice and seemingly endless energy. He contacted me because he'd found out about my illness and wanted to let me know he'd been wiped out by Lyme. It's hard to imagine that bulldozer of a man laid out by illness, but he is.

So if the strongest immune system can't handle Lyme, what do you suppose it would do to us? The symptoms -- which are almost identical to ours -- would almost certainly compound our existing problems and add a whole new set of them as well. One ME/CFS researcher who focuses on infectious agents says the subgroup of patients with Lyme are the hardest ones to treat.

That covers why you don't want it, so how do you prevent it? My About.com colleague Carol Eustice, Guide to Arthritis, has some excellent resources for you:

I learned some great information from those articles that I'll use to protect myself and my children when we're out in the woods this summer.

Have you had Lyme disease? Do you believe it triggered fibromyalgia or ME/CFS? Have you found effective treatments? Leave your comments below!

Learn more or join the conversation!

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Comments
July 7, 2011 at 7:01 am
(1) Steve H. says:

Lyme Disease has been shown to be different from CFS by a study quantifying the different proteins in spinal fluid – see the referenced URL or

http://health.groups.yahoo.com/group/Lyme-Aid/message/87618

July 7, 2011 at 7:38 am
(2) Barbarella aka the Mad Cat Lady says:

However, one difference between Lyme Disease and fibro is that Lyme´s can be found in the blood if tested for. Of course, you can then have fibro on top of Lyme´s…

July 7, 2011 at 9:48 am
(3) Rachael says:

The genes to develop an autoimmune disease (chronic activation of the immune system) and many triggers for conditions like chronic Lyme Disease, CFS, Fibromyalgia, Gulf War Syndrome (viruses, vaccines etc); chronic Lyme disease could be an autoimmune condition. A paper just published in the journal Brain, Behavior, and Immunity highlights an important principal in clinical practice: even when an acute infection has been cleared by antimicrobial therapy, a chronic autoimmune disorder can develop due to immune dysregulation.

Anti-neural antibody reactivity in patients with a history of Lyme borreliosis and persistent symptoms

http://www.sciencedirect.com/science/article/pii/S0889159110000553

July 7, 2011 at 10:10 am
(4) Denise Longman says:

There is still confusion about the “post Lyme” situation – and calling it “auto immune” does not rule out that there might be persistent infection there.
I have known Lyme patients who took years to get better, but they did, usually with antibiotics of one type or another

This is a letter from the author of study mentioned:

Hi everyone,

I’m the lead investigator of the study being discussed. I’d like to thank everyone here for the interest in our work. But I see some misunderstanding about the study. I’d like to set some things straight:

3) I should mention that the presence of the reported anti-neural antibodies does not necessarily indicate autoimmunity. Nor does it necessarily mean that the antibodies are directly causing the symptoms. What is important about our findings is that they demonstrate the presence of immunologic abnormalities in PLS and imply the existence of a disease process affecting the immune system in a substantial number of patients. This suggests that we can find out more about the disease by studying the patients’ immune response more closely. We might also discover specific new biomarkers to aid in the diagnosis and follow-up of patients through this approach.

Thank you for reading. I hope that my explanations were helpful.

Best regards,

Armin Alaedini

July 7, 2011 at 10:21 am
(5) Elle says:

After 3 positive Elisa tests, and one indeterminate Western Blot I am still in the dark as to whether or not I have Lyme disease. I have a formal diagnosis for Fibromyalgia and CFS, but I definitely feel that something else is going on and can’t find anyone who can give me a clear answer.

I have been to 2 infectious disease clinics, the first telling me that there isn’t Lyme in Canada, only mass hysteria about the illness (3 years ago), and the second clinic (last year) didn’t know what to do or how to move forward and led me around in circles until I finally hit a dead end. I have seen many other specialists since then but everyone shuts down as soon as you ask the Lyme question.

The doctors who do treat Lyme patients in Ontario have all closed off their waiting lists, too many patients and too much risk treating this population. I am weary of the many doctors and healers selling suspect solutions at an extremely high prices. We are a desperate population and it is easy to take our money with the right sales pitch. I have drawers full of this stuff.

People tell me to pack up and leave, seek help out of country or province, but this is extremely expensive and comes with a slim guarantee. I have read as many horror stories as I have success stories from patients who have taken this route.

It’s unbelievably frustrating and frightening being a possible Lyme patient with fibromyalgia. Every passing year, getting a little bit sicker, nearing the disability mark. I’m not sure if there is a good treatment solution out there, or even a perfect method for diagnosing the illness? I’ve been chasing it for years. I don’t know. Any suggestions??

July 7, 2011 at 11:29 am
(6) Cathy says:

Just shared a link and will share with you, a wonderful lady on fb, who is origionally from South America, now lives in Florida, and is recieveing treatment for Lyme, and getting better. She says its much easier to treat Lyme in South America because these sort of illnesses are diagnosed and treated all the time. Ivermectin? is one of the meds that is being used where she is. Check out her fb pg, she studied Journalism at one time, so is very articulate and has good info. Hope this helps!

https://www.facebook.com/home.php#!/LYMEMJ?sk=wall

July 7, 2011 at 1:31 pm
(7) Elle says:

Cathy, thanks you so much for sharing this with me. I’ll definitely look into it!

July 8, 2011 at 11:05 am
(8) cAREY says:

i CAN NOT FIND THIS FACEBOOK PAGE. HELP!!

July 8, 2011 at 1:01 pm
(9) Sara Brenner says:

Elle, I have been trying to post a reply to you, but it never appears. I will keep trying!

July 8, 2011 at 2:16 pm
(10) Sara Brenner says:

A good source for information is the website of the International Lyme and Associated Diseases Society (ILADS). The “About Lyme” link is a good place to start:
http://ilads.org/

July 9, 2011 at 6:58 pm
(11) Adrienne Dellwo says:

Hi, Sara! Posts don’t always show up right away, and especially those containing links may require approval before they post. No need to keep reposting – they’ll get here soon!

Thanks,
Adrienne

July 8, 2011 at 2:03 pm
(12) Sara Brenner says:

I know it feels risky to seek medical care far from home, but Lyme can be life threatening, and so can FM/CFS. Having both is scary.

Lyme is a CLINICAL diagnosis, so you need a doctor who will evaluate you beyond what lab tests may or may not show. I’m in Wisconsin, and have have had CFS for decades; but I’ve also been infected with Lyme several times. I’ve been successfully treated each time in or near Wisconsin. That said, your point about doctors selling “suspect solution” is well taken. I’m grateful that the doctor who treated me most recently did not peddle any of that stuff.

One suggestion I have would be to join the Wisconsin Lyme group, or the Yahoo group of another state where you might consider going for treatment. I can tell you that Mike, the moderator of the WI group, is very knowledgeable.

A good way to find “Lyme literate” doctors in the States is the Lyme Disease Association’s automated doctor referral system. They list Canada, but that search came up empty for me yesterday. You’ll need to register first, and are limited to three searches every 30 days.

A good source for information is the website of the International Lyme and Associated Diseases Society (ILADS). The “About Lyme” link is a good place to start.

I hope you find the help you need very soon!

http://health.groups.yahoo.com/group/WisconsinLyme/
http://module.lymediseaseassociation.org/referral/LogIn.php
http://ilads.org/

July 8, 2011 at 2:06 pm
(13) Sara Brenner says:

I know it feels risky to seek medical care far from home, but Lyme can be life threatening, and so can FM/CFS. Having both is scary.

Lyme is a CLINICAL diagnosis, so you need a doctor who will evaluate you beyond what lab tests may or may not show. I’m in Wisconsin, and have have had CFS for decades; but I’ve also been infected with Lyme several times. I’ve been successfully treated each time in or near Wisconsin. That said, your point about doctors selling “suspect solution” is well taken. I’m grateful that the doctor who treated me most recently did not peddle any of that stuff.

One suggestion I have would be to join the Wisconsin Lyme group, or the Yahoo group of another state where you might consider going for treatment. I can tell you that Mike, the moderator of the WI group, is very knowledgeable.

July 8, 2011 at 2:11 pm
(14) Sara Brenner says:
July 8, 2011 at 2:12 pm
(15) Sara Brenner says:
July 8, 2011 at 2:14 pm
(16) Sara Brenner says:

A good way to find “Lyme literate” doctors in the States is the Lyme Disease Association’s automated doctor referral system. They list Canada, but that search came up empty for me yesterday. You’ll need to register first, and are limited to three searches every 30 days:
http://module.lymediseaseassociation.org/referral/LogIn.php

July 8, 2011 at 2:19 pm
(17) Sara Brenner says:

A good source for information is the website of the International Lyme and Associated Diseases Society (ILADS). The “About Lyme” link is a good place to start:
http://ilads.org/

(WHEW!)

July 7, 2011 at 10:50 am
(18) Rachael says:

Proteins found in the spinal fluid may serve as biomarkers to help doctors cut through the clutter of symptoms that show up in two groups of patients — those with chronic fatigue syndrome and others with lingering effects from Lyme disease. Both disorders involve the central nervous system. This provides strong evidence of a biological component.

http://www.sciencenews.org/view/generic/id/70251/title/Tired,_sure,_but_is_it_from_Lyme_disease_or_chronic_fatigue%3F

July 7, 2011 at 11:22 am
(19) Cathy says:

There is a lot we dont know in this country about Lyme, and other parasites, but I have quite a few contacts and friends who are struggling with it. To be noticed, to be heard, to even be recognized as being ill.
I have a contact on fb who is origionally from South America, who has Lyme disease, but is recieving medicine and treatment for it. She says that in South America this problem is readily diagnosed and treated (not with antibiotics) because they are used to dealing with parasites and such down there. Its not a taboo topic, just a fact of life. She lives in Florida, and has a web page and all kinds of info, and keeps posting as she goes through treatement and is getting better.
Here is her fb link, to check out.
https://www.facebook.com/home.php#!/LYMEMJ
I tend to trust the people who are getting answers as compared to those who dont believe in the existance of something even when it is slapping them in the face! After all, look how long it has taken even a portion of the medical community to come around on CFS and FMS. They are slowly coming, and I am greatful, but in the meantime others with helpful info are a great resourcee!
Have a lovely day!

July 7, 2011 at 5:37 pm
(20) Cecelia says:

Encourage predators, particularly of rodents, such as foxes and coyotes. The one area I have lived in which did not have a tick problem had a local coyote pack and gray foxes in residence. Non of the human residents were troubled by ticks, moles, voles or woodchucks in their yards or gardens. Some had lived there 25 years without ever pulling a tick off their dog, whereas in communities close by without coyotes and foxes, but with deer and mice, ticks are a very common occurrence for dogs and humans. It is the rodents, more than the deer, which provide the majority of hosts for the “deer” tick. Deer also matter but they do not cover the ground as “the carpet of rodents” can, in fields and forests. Housecats, owls, some snakes and skunks also hunt mice.

July 8, 2011 at 1:09 am
(21) WillowJ says:

I got Lyme disease (with bullsye rash) after I got ME/CFS.

July 8, 2011 at 12:08 pm
(22) Rachael says:

Serum samples from PLS patients, post-Lyme disease healthy individuals, patients with systemic lupus erythematosus, and normal healthy individuals were analyzed for anti-neural antibodies by immunoblotting and immunohistochemistry.

Anti-neural antibody reactivity was found to be significantly higher in the PLS group than in the post-Lyme healthy (p<0.01) and normal healthy (p<0.01) groups.

The observed heightened antibody reactivity in PLS patients could not be attributed solely to the presence of cross-reactive anti-borrelia antibodies, as the borrelial seronegative patients also exhibited elevated anti-neural antibody levels.

http://www.prohealth.com/library/showarticle.cfm?libid=15231

July 8, 2011 at 1:19 pm
(23) Heather says:

I had lyme disease and then was diagnosed with fibromyalgia in 2002. I’m still disabled. The lyme wasn’t treated for almost a year. Be aware that the CDC says that the blood test for lyme disease is at best 50% accurate. There is a urine test that is accurate, so ask for that one.

The horrible thing about ticks is that not only do they carry lyme disease, they also carry a parasite and other infectious bacterium as well. A person can be bitten by a tick and end up with 3 or more different things to treat. In my experience, it was difficult to even be tested for lyme at all, so I haven’t been tested for the rest. It’s possible that I don’t have true fibromyalgia and just have different tick-borne illnesses and/or the parasite babesiosis (if I spelled that correctly.)

Mycoplasma is another invader that can be transmitted by ticks. It can cause pain and fibro-like symptoms as well. Its treatment is long-term antibiotics, just like the treatment for lyme and the rest, other than the parasite which gets an anti-parasitic. Make sure to be tested for mycoplasma, too, if you’re bitten.

July 8, 2011 at 4:39 pm
(24) Rachel says:

I am a veterinary tech. We seem so more advanced in the treatment of lyme disease in dogs. For one thing we have a vaccine for lyme disease. It is only 50-70% effective but whe you are in the midwest where lyme disease is so prevelant it helps. Why don’t they have a vaccine for people? we recommend testing dogs every year and will treat if we have a positive test. We don’t run several tests at a high dollar we treat with 30 days of doxycycline. The human testing and diagnosing wastes a lot of valuable time that people can be treated.

July 8, 2011 at 6:17 pm
(25) Rachael says:

They did have a vaccine for people, but there were problems with it. “As of March, 2002, the LymerixÒ vaccine is no longer available. In December 1999, a class action suit was filed against SmithKline Beecham, the manufacturers of the LYMErixÒ vaccine. The complaint alleges the manufacturer failed to warn doctors and the general public that nearly 30% of the general population was genetically pre-disposed to a degenerative autoimmune syndrome, including chronic arthritis, which the lawsuit says, is triggered by the OSP-A contents of the vaccine. We know that the OSP-A contains many of the toxic BLPs that trigger LD. Many private lawsuits have also been filed from individuals who received the vaccine and are now disabled with chronic arthritis. So, this means that a safe vaccine is not yet available to the public.”

http://autoimmunityresearch.org/lyme-disease/

July 11, 2011 at 5:17 pm
(26) Lymie says:

Hi Rachel=
I am replying to your post on a facebook page about Lyme disease. You say you are a veterinarian. I have a sister that I live with who’s dog has lyme already—but for some reason the vet has given the dog several “booster shots” for the lyme. I was wondering also–how effective is ivermectin against parasites that dogs get? I know that it is given to people (human grade iver) to kill certain parasites but in my opinion, the length of time that drs. give iver to people to kill parasites really isn’t long enough to kill the “cycle” that parasites go thru—so in essence, even after taking iver—you can still have parasites–so. then what do u do? Good question!!!

July 13, 2011 at 7:03 pm
(27) AIDAN WALSH says:

CIGUATERA (EPITOPE) TOXIN IS A MORE PROMINENT INFECTION IN FIBRO/CFS THAN LYME DISEASE…OUT OF 300 INITIAL CFS PATIENTS ALL TESTED POSITIVE TO THIS TEST AND IS A MORE ACCURATE TEST AND IS ALSO ‘REPLICATED SCIENCE’…JOHN BURNS SCHOOL OF MEDICINE HAWAII…MARINE BIOLOGISTS…I THINK THE TEST IS ABOUT $100.00 U.S. DOLLARS TO BE TESTED… CHECK WITH GAIL KANSKY’S GROUP OUT OF BOSTON, MASS. ALSO ONCE YOU ARE POSITIVE THERE ARE CASES OF MONETARY COMPENSATIONS IN COURT AND THE ONLY GOOD OF THIS TEST IS NO-ONE CAN BE DENIED INSURANCE OR DISIBILITIES AND GETS YOU AWAY FROM THE CFIDS CIRCUS ….SINCERELY AIDAN WALSH SOUTHAMPTON, U.K.

July 14, 2011 at 9:18 pm
(28) kathy in PA says:

lyme is endemic on my area. i have had it 3 times, with last year’s bout being the worst. my dogs have had it several times also. i imagine lyme to be similar to what it must be like to suffer from a tropical disease. doxycyline for 1 month or 2 generally works if diagnosed within the initial infection. remember that the lyme spirochete acts just like the syphyllis spirochete. eventually it will infect the brain if untreated.

i’ve had full blown fibro for at least 15 years, but when i reflect on my childhood, i had something similar even then. i take a combo of supplements and prescriptions to manage an active, but affected life. when lyme hits, it is like a mac truck, very different from my managed fibro.

i am quite sure that long term untreated (or any) lyme causes joint damage and muscle damage, which makes fibro worse.

April 30, 2012 at 2:25 am
(29) linda says:

I have been diagnosed with fibro, chronic fatique, r.a.,,,everytime I take a lymes disease test it is negative..And I did get a bullseye years ago treated with a antibotic. I finally received info on a test done in california that uses several different types of ticks along with viles of your blood. Usually the results are positive, not like here in michigan with only one type of lymes disease test. To all the pain and sleepness nights, I hope this really helps.

November 29, 2013 at 4:19 am
(30) Patty says:

I was diagnosed with lymes disease 4 years ago and then diagnosed with fibromyalgia. I know a lot of people that have fb but there symptoms are just the opposite of mine. My symptoms besides beining tired most of the time my aches and pain in my joints become worse when I go to bed or lay down. If any info would love feed back

December 13, 2013 at 4:12 pm
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