28 replies to this topic

[StrangeAeons]

I have a close friend who lives in the UK right now who recently has had the following complaints:

• Chest pains (especially when breathing deeply) after any physical/mental effort
• Exhaustion unremedied by a good night's sleep
• Poor concentration
• Headaches
• Sudden fast, pounding pulse
• Dry eyes
• Poor memory

and others of this nature. She saw a general practitioner and he made the "diagnosis" of fibromyalgia. She says she's been tested for malnutrition, autoimmunity, thyroid, and liver problems. I personally selected the 4th option on the above survey, as I think there needs to be better diagnostic criteria.
She is decidedly "the type" to have fibromyalgia in certain respects; she is thin, female, and very prone to illness in general. She also generally leads a high stress lifestyle and is in a relationship with another very close friend of mine, and I can tell you right now that I would kill myself if I had to spend as much time with him as she does. She can be highly neurotic at times, and recently abandoned fundamentalist Christianity to become agnostic; she has sought counseling in the past for her various issues, but I would not rule out comorbid psychiatric disorders as an etiology.
I don't know exactly what to think or what to tell her. I would like to query all of you regarding what you believe about this syndrome, as I am extremely skeptical about it. Right now she believes that it is the result of a "chemical imbalance in my brain" and I don't think this kind of explanation is remotely satisfactory, not for her and decidedly not as a basis for her practitioners to issue treatments. Please let me know what you think, as well as what type of supplements and/or additional testing you think would benefit somebody with such a diagnosis.

[notlupus]

Did the doctor check for the typical painful points associated with fibro? There are several points you can touch that'll be extremely painful for someone with fibro. A lot of docs use it as a wastebasket diagnosis though, they say it's fibro and throw your chart in the trash can because they are tired of dealing with you and don't want to admit they can't tell you what's really wrong, or they think you are a hypochondriac.

[FunkOdyssey]

Fibromyalgia is?

Other: A Descriptive Term for Lyme Disease.

She has Lyme.

[StrangeAeons]

Fibromyalgia is?

Other: A Descriptive Term for Lyme Disease.

She has Lyme.

That's a pretty hefty catch-all, and no offense but I consider you just a tad biased towards Lyme as it is both your affliction and your area of expertise, FunkO. I might as well make similar allegations with regards to hypochromia and malabsorption. In the interest of empirical verification, what tests should be run? How reliable is the antibody test?

[FunkOdyssey]

Yes of course, it could also be hepatitis C or a few other things, I just like to shout Lyme since it is the most widespread of the infections that produce this array of symptoms commonly misdiagnosed as fibromyalgia and/or chronic fatigue syndrome. I posted about the testing in another thread:

http://www.imminst.o...&...st&p=300112

[Lufega]

My aunt was diagnosed with fibromyalgia, chronic fatigue sindrome, lupus and other things. She also has severe connective tissue problems. I think she has Lyme. She's getting the western blot done soon so we'll know for sure.

[notlupus]

That's a pretty hefty catch-all, and no offense but I consider you just a tad biased towards Lyme as it is both your affliction and your area of expertise, FunkO. I might as well make similar allegations with regards to hypochromia and malabsorption. In the interest of empirical verification, what tests should be run? How reliable is the antibody test?

Igenex western blot, IgM and IgG, might as well get the package deal with the IFA as well but definitely the blot.

Did the exam suggest fibro? If she doesn't have the tender points then I'd be much more suspicious of misdiagnosis than if she has them.

This is starting to remind me of a vehicle forum. Which one should someone get? Well the same one I have of course.

[FunkOdyssey]

This is starting to remind me of a vehicle forum. Which one should someone get? Well the same one I have of course.

I traded in my MR2 Spyder for Lyme Disease. At least it seems that way based on timing. In about a year, I hope to trade in Lyme Disease for an S2000. This time will be more literal since the money saved on doctor's visits, drugs and supplements will pay for the car. Gives me a goal to look forward to.

[notlupus]

This is starting to remind me of a vehicle forum. Which one should someone get? Well the same one I have of course.

I traded in my MR2 Spyder for Lyme Disease. At least it seems that way based on timing. In about a year, I hope to trade in Lyme Disease for an S2000. This time will be more literal since the money saved on doctor's visits, drugs and supplements will pay for the car. Gives me a goal to look forward to.

Opposite problem here, I had to get a car because of the balance issues and fatigue (was previously bicycle and motorcycle only). Wanted a Miata or other small car but they were obscenely overpriced on the used market last summer so I ended up with an old caprice (5.7L V8, polar opposite but oh well). It's fairly reliable for it's vintage, but I wouldn't encourage anyone to buy one. I didn't realize cabin air filters were such a recent addition. Ah well, I need to get a steamer to use on the couch too.

[bgwithadd]

I don't think any of your options in the first part are necessarily true. It's always trendy to call other people's problems made up or attribute them to bad character, thetans, bad parenting or shakra out of alingment, but I seriously doubt that is the case in 99.9% of people. There's too many treatments that work for fybromyalgia for it to be anything but a real condition. If they help our friend it's likely the right diagnosis. If not, not. I know people who have it, and it definitely sucks. But, it responds well to treatment with some supplements and drugs.

For the second part, again I don't see why any of those are necessarily the case (probably none) except of course for 1) which always factors in. I doubt there's such a thing as simply having low levels of neurotransmitters, at least not as a common source of problems. It's way too simplistic an explanation for something so complex as the brain. A lot more happens when you take an SSRI and even with the oldest psych meds out there, stims, they still don't know how they work and have recently found most everything they assumed was completely wrong. Stress is a factor in lots of things but again that's oversimplification, and it's probably something that makes issues worse more than actually causing them. Stress also doesn't just come from nowhere and is not entirely situational by any means.

[yoyo]

didn't someone just post a link to a VitD lecture?, indicating fibro might be vitaD deficiency. like most psychiatric or soma-psycblahblah disorders its probably a vague snyndrome lumping a bunch of things together. but, saying 'oh well its some bs we'll laugh at in 3 decades' is not helpful for those currently ill.

things i'm remembering that i'd look into: ALCAR/creatine, SWS aids like cyproheptadine, and all the stuff thats normally good for health everyone here knows about like w-3s.

[k10]

I agree with Funk that it is either Lymes Disease, or a combination of several different disorders.

No way in hell is it a disorder in and of itself. I'm a true believer that 100% of fibromyalgia patients have something else, and that what they call 'fibromyalgia' is simply a bunch of symptoms caused by something else clumped into a catch-all diagnosis.

Edited by k10, 21 February 2009 - 05:29 AM.

[nameless]

There are various theories on what fibromyalgia actually is, but I doubt it's just a bunch of people with 'all-in-their-heads' symptoms. Could be a vitamin D deficiency and I've also read it could be a magnesium deficiency. It could be thyroid related. It could be Lyme. It could be some type of auto-immune problem. Could be none of the above...

As for further testing, definitely get Lyme tested. Get her D and magnesium levels tested too, although mag testing usually isn't so accurate. Wouldn't hurt if she simply started a magnesium regimen to see if it helped at all.

And she should verify that her thyroid was properly tested. Quite often doctors simply give a TSH test and if it falls under 5.0, they say the person is 'normal'. She should get TSH, Free T3, Free T4 and thyroid antibodies tested. If T3 or T4 is near the bottom of 'normal' ranges, it could cause symptoms. If TSH > 3, it's suspicious too. And if antibodies are high, she probably has Hashimoto's.

And there is a danger in saying anyone with fatigue or odd symptoms has Lyme. It may be very well true, but I've noticed on these boards lately a couple of people say they suspect they have Lyme, or they probably have it, yet they haven't been tested or their bloodwork is inconclusive, etc. It could be that she has Lyme, or those posting do have it too... but really a doctor would be best to make that diagnosis (ideally one who specializes in Lyme), and I personally wouldn't recommend supplementing or trying to get medications based on self-diagnosis or guesswork.

I assume she also has a full medical workup, including cardiac testing? I don't know what age-group she's in, or her risk factors, but chest pains upon physical exertion could be a warning sign for heart disease.

[nowayout]

I have a close friend who lives in the UK right now who recently has had the following complaints:

• Chest pains (especially when breathing deeply) after any physical/mental effort
• Exhaustion unremedied by a good night's sleep
• Poor concentration
• Headaches
• Sudden fast, pounding pulse
• Dry eyes
• Poor memory

Seems consistent with depression/anxiety disorder also, especially given the background and circumstances.

Edited by andre, 21 February 2009 - 11:41 AM.

[undiagnosed]

I'm the unnamed friend and would like to thank PetaKia for posting about my condition, as well as the rest of you for your insights. My main symptom is aching joints and muscles -- however, there is no visible deformity or swelling. My condition is not too severe, my main concern being that I am a professional pianist, currently enrolled in a graduate music course, and therefore am significantly affected by my current symptoms. I have not been diagnosed with fibromyalgia ... it is simply a guess by my general practitioner, after ruling out autoimmune diseases and thyroid problems, and checking the typical tender points associated with fibromyalgia. Within the next few weeks, I'll be seeing physiotherapists and rheumatologists and hope to have a well-defended diagnosis.

I did receive a negative test for Lyme in 2007, after a tickbite. Until recently, I've had no Lyme-related symptoms, but will be tested again to be sure. I am awaiting my personal copy of my blood test results, after which I will be able to provide much better information about my precise thyroid and autoimmune tests and results, etc.

Stress could easily be a factor. I have gone through some stressful times in my life, as alluded to in the original post, but these are about 18 months in the past, and for the last 6 months, my life has been stable and happy. However, the music profession in London is cut-throat, and I could easily see this contributing to my symptoms.

[Matt]

Just want to throw this one out there. Have you taken an antibiotic days, weeks or months before these symptoms came on. Have you taken Cipro, Floxin, Levaquin, Avelox or any other http://en.wikipedia.org/wiki/Quinolone drug? I had all those symptoms.

[FunkOdyssey]

I'm the unnamed friend and would like to thank PetaKia for posting about my condition, as well as the rest of you for your insights. My main symptom is aching joints and muscles -- however, there is no visible deformity or swelling. My condition is not too severe, my main concern being that I am a professional pianist, currently enrolled in a graduate music course, and therefore am significantly affected by my current symptoms. I have not been diagnosed with fibromyalgia ... it is simply a guess by my general practitioner, after ruling out autoimmune diseases and thyroid problems, and checking the typical tender points associated with fibromyalgia. Within the next few weeks, I'll be seeing physiotherapists and rheumatologists and hope to have a well-defended diagnosis.

I did receive a negative test for Lyme in 2007, after a tickbite. Until recently, I've had no Lyme-related symptoms, but will be tested again to be sure. I am awaiting my personal copy of my blood test results, after which I will be able to provide much better information about my precise thyroid and autoimmune tests and results, etc.

Stress could easily be a factor. I have gone through some stressful times in my life, as alluded to in the original post, but these are about 18 months in the past, and for the last 6 months, my life has been stable and happy. However, the music profession in London is cut-throat, and I could easily see this contributing to my symptoms.

If these symptoms only began in the recent, post-tick-bite part of your life (any point in time after the 2007 bite), than we have almost certainly zeroed in on Lyme as the problem. The amount of time it may take to develop symptoms after infection is individually variable, ranging from immediately, to decades, to never. And if you had a test shortly after the bite, that is insufficient time for your body to produce antibodies, and would have produced a false negative. Of course, the tests a regular doctor would have run (ELISA screen w/ western blot by CDC criteria reflex) are awful, the ELISA is only 47% sensitive under ideal conditions.

The test you want to take is the IgM and IgG western blot with all bands reported. CDC criteria omits some bands that are so prevalent in Lyme that were used to make Lyme vaccine, in order to prevent false positives in those who took the vaccine. The CDC stated repeatedly that its criteria are only to be used for its population-wide disease incidence monitoring purposes, not for diagnosis, however this seems to fall on deaf ears. The most widely used lab reporting all bands on the western blot is Igenex.

Please post here and you'll receive a list of doctors in your area that are capable of accurately determining whether you do in fact have Lyme, and if so, treating it correctly (they are called LLMD's, Lyme Literate M.D.):

LymeNet.org - Seeking a doctor

[eternaltraveler]

I have a close friend who lives in the UK right now who recently has had the following complaints:

• Chest pains (especially when breathing deeply) after any physical/mental effort
• Exhaustion unremedied by a good night's sleep
• Poor concentration
• Headaches
• Sudden fast, pounding pulse
• Dry eyes
• Poor memory

Seems consistent with depression/anxiety disorder also, especially given the background and circumstances.

yep

[undiagnosed]

Just want to throw this one out there. Have you taken an antibiotic days, weeks or months before these symptoms came on. Have you taken Cipro, Floxin, Levaquin, Avelox or any other http://en.wikipedia.org/wiki/Quinolone drug? I had all those symptoms.

I took Chloramphenicol eyedrops for conjunctivitis around the same time as developing these symptoms. I was on the drops for 7 days.

[undiagnosed]

I'm the unnamed friend and would like to thank PetaKia for posting about my condition, as well as the rest of you for your insights. My main symptom is aching joints and muscles -- however, there is no visible deformity or swelling. My condition is not too severe, my main concern being that I am a professional pianist, currently enrolled in a graduate music course, and therefore am significantly affected by my current symptoms. I have not been diagnosed with fibromyalgia ... it is simply a guess by my general practitioner, after ruling out autoimmune diseases and thyroid problems, and checking the typical tender points associated with fibromyalgia. Within the next few weeks, I'll be seeing physiotherapists and rheumatologists and hope to have a well-defended diagnosis.

I did receive a negative test for Lyme in 2007, after a tickbite. Until recently, I've had no Lyme-related symptoms, but will be tested again to be sure. I am awaiting my personal copy of my blood test results, after which I will be able to provide much better information about my precise thyroid and autoimmune tests and results, etc.

Stress could easily be a factor. I have gone through some stressful times in my life, as alluded to in the original post, but these are about 18 months in the past, and for the last 6 months, my life has been stable and happy. However, the music profession in London is cut-throat, and I could easily see this contributing to my symptoms.

If these symptoms only began in the recent, post-tick-bite part of your life (any point in time after the 2007 bite), than we have almost certainly zeroed in on Lyme as the problem. The amount of time it may take to develop symptoms after infection is individually variable, ranging from immediately, to decades, to never. And if you had a test shortly after the bite, that is insufficient time for your body to produce antibodies, and would have produced a false negative. Of course, the tests a regular doctor would have run (ELISA screen w/ western blot by CDC criteria reflex) are awful, the ELISA is only 47% sensitive under ideal conditions.

The test you want to take is the IgM and IgG western blot with all bands reported. CDC criteria omits some bands that are so prevalent in Lyme that were used to make Lyme vaccine, in order to prevent false positives in those who took the vaccine. The CDC stated repeatedly that its criteria are only to be used for its population-wide disease incidence monitoring purposes, not for diagnosis, however this seems to fall on deaf ears. The most widely used lab reporting all bands on the western blot is Igenex.

Please post here and you'll receive a list of doctors in your area that are capable of accurately determining whether you do in fact have Lyme, and if so, treating it correctly (they are called LLMD's, Lyme Literate M.D.):

LymeNet.org - Seeking a doctor

Thanks for all this info. One symptom that was causing me to suspect fibromyalgia (or a similar musculoskeletal disease) over Lyme is the chest pains (mostly on the right side, and in the back as well as front of my chest) that I get after physical exertion. Due to the location and type of these pains (dull ache that increases with the depth of my breathing), I don't believe it's heart-related, but I am getting an EKG done nonetheless. I've never heard of this symptom being associated with Lyme.

[ajnast4r]

fibromyalgia seems to go hand in hand with chronic epstein-barr or lyme infection

[FunkOdyssey]

Thanks for all this info. One symptom that was causing me to suspect fibromyalgia (or a similar musculoskeletal disease) over Lyme is the chest pains (mostly on the right side, and in the back as well as front of my chest) that I get after physical exertion. Due to the location and type of these pains (dull ache that increases with the depth of my breathing), I don't believe it's heart-related, but I am getting an EKG done nonetheless. I've never heard of this symptom being associated with Lyme.

Chest pain of all varieties is frequently associated with Lyme, both heart related and not heart related. Costochondritis for example is common with Lyme and often mistaken for heart trouble. I've personally had costochondritis, some actual pains from the heart, and pain in my back from the pancreas. I haven't had any chest pain at all in the last couple months (I'm about 7 months into treatment).

Please read this brief introduction to Lyme and poke around the rest of the site if you have time:

http://www.ilads.org...about_lyme.html

Edited by FunkOdyssey, 21 February 2009 - 06:43 PM.

[nameless]

Thanks for all this info. One symptom that was causing me to suspect fibromyalgia (or a similar musculoskeletal disease) over Lyme is the chest pains (mostly on the right side, and in the back as well as front of my chest) that I get after physical exertion. Due to the location and type of these pains (dull ache that increases with the depth of my breathing), I don't believe it's heart-related, but I am getting an EKG done nonetheless. I've never heard of this symptom being associated with Lyme.

One possibility is costochondritis, which is an inflammation of the rib cartilage. Although this wouldn't explain it if you have muscle aches/joint pain all over. It usually goes away on its own, or comes and goes -- nothing serious, but it can be annoying. I had this several years ago, but vit D/magnesium seems to have solved it.

Edit: And I see I was beaten to the punch.

And I didn't know costochondritis was associated with Lyme. If so, it does strengthen the case that it could be a cause, especially with other symptoms involved.

Edited by nameless, 21 February 2009 - 06:44 PM.

[StrangeAeons]

well now that my friend has taken over I suppose I don't really have much to contribute to the discussion; I didn't even think of "floxing", but that's a distinct possibility. Mag is decidedly a good idea in this case. Thanks to everybody, I knew I could count on the people here to come up with some good ideas.

[Lufega]

fibromyalgia seems to go hand in hand with chronic epstein-barr or lyme infection

Reading over this post again, I realize that I have the SAME symptoms as your friend with the addition of many, many more. Some, I've been able to figure out, like the orthostatic hypotention. Others, like my dry eyes, still puzzle me. I also had epstein-barr virus infection when I was 15. I can tell you I was never the same after that. I don't think I fully recovered. Before Funk introduced me to the possibility of Lyme disease (I sent my test in, should get results any time now) I was researching the theory that chronic fatigue syndrome is really caused by chronic infection. The prefered infectious agent of this one particular researcher was Epstein-Barr. After further reading, I learned that EBV goes into a latent phase after the inital infection and it doesn't generally cause symptoms thereafter. So, this researching/Doctor as well as others, concluded that, there must be a CO-infection that is undermining the immune system and allowing EBV to rise from it's dormant phase. In my case, I think it's Lyme.

I remember the fatigue and the other symptoms of an acute EBV infection. However, I haven't been able to find how to this day how a virus can cause all the connective tissue problems I suffer with. Lyme disease can explains all those problems and more. I also suffer from depression/anxiety disorders. When hell started for me, my inital diagnosis was depression. I toyed with anti-depressants and the like, for the better part of a year. I quickly realized they offered no help at all and soon stopped. More than 7 years later, I still can't reverse the weight gain and gynecomastia it induced and God-knows what other problems it caused. However, anxiety and depression cannot explain connective tissue problems and they are still labeled of unknown etiology. Maybe Lyme? Maybe a virus? In 50 years we'll learn that all depression is infectious in origin. I also used Accutane and had horrible side-effects including neurological ones. I believe accutane ravages GABA receptors (or was it dopamine R). The point here is, while other events can explain one or two of my many problems, it doesn't cover them all. I think the combination of Lyme disease with other comorbid problems can answer for all my problems. But among all my negative health experiences, Lyme is the only one that I can actively treat and lead to some improvement. You can't cure viral infections or anxiety/depression. I know I am still missing a diagnosis, but I've done my HW and I'm almost convinced I have it. All my research to date NOT ONCE has led me to think Lyme disease. If it weren't for someone being biased towards Lyme, it probably would have taken me another 10 years to figure it out myself.

Edit: I forgot to mention, back in 2007 and part of 2008, I was taking cipro and cipro-uro like candy for a mysterious UTI that just wouldn't go away so I'm sure I too got "floxed."

Edited by Lufega, 24 February 2009 - 02:36 AM.

[notlupus]

I was diagnosed with chronic fatigue and even did 6 months of valcyte before learning I had Lyme. I'm not saying everyone has it, but it's worth getting the western blot (I had multiple negative ELISAs previously) before going through all sorts of exotic treatments for other things. For added fun, try working with doctors and telling them you have a condition the CDC claims does not exist.

[krillin]

Reading over this post again, I realize that I have the SAME symptoms as your friend with the addition of many, many more. Some, I've been able to figure out, like the orthostatic hypotention. Others, like my dry eyes, still puzzle me.

I'm still way too busy to get caught back up with the forum, but I figured I'd throw out these references that I'm currently plowing through.

http://en.wikipedia....i/Jay_Goldstein
http://books.google....tigue Syndromes
http://books.google....al by the Brain
http://books.google....uning the Brain

They are easily the coolest collection of lore I've ever come across. The guy has a neat sense of humor too. From p. 318 of Tuning the Brain: "Guaifenesin is the best of the glycine-site antagonists. [. . .] There are other purported modes of action for guaifenesin in neurosomatic disorders, but they seem to have come from another space-time continuum." Take that, St. Amand!

On page 77 of Chronic Fatigue Syndromes: The Limbic Hypothesis he says that dry eyes are probably from dysfunctional autonomic control of tear secretion.

Dr. Goldstein is long-retired, but his site is in the Wayback Machine.

http://web.archive.o...ethodology.html

Since the Wayback Machine is glitchy, I've attached his receptor profiling algorithm.

Attached Files

•  Profiling_Chart.gif   20.02KB   44 downloads

[Lufega]

Thanks for the info. Krillin. Good to see you posting again. My brain fog was terrible yesterday. I forgot to mention that Dry eyes when not associated with Sjogren's is due to an autonomic nervous system problem in basal tears production which is itself caused by a B1 def. I wrote about it before here somewhere. I'm trying to correct this with a combo of benfo. and TTFD but the progress is slow, but steady. The dry eyes is the only thing that hasn't improved much. I'm going to try N-acetyl-carnosine drops and lots of bilberry extract to see what will happen, although, I'm not expecting much improvement from that.

Thanks for the links! Will read through it all.

[bgwithadd]

This place is amazing. You can get more out of reading here for an afternoon than you'll get from 100 visits to a typical doctor or even specialist (and believe me, I know). It's not really the point of this place but there are a few people with various problems I will have to refer here eventually.