Mis-diagnosis - Suffered for 10 years with Fibro diagnosis - turned out to be lyme di

[Gregster]

A close friend of mine was diagnosed with fibromyalgia about 12 years ago. Hasn't worked in years, has to use an electric cart to get around, and been all over to trying to find help - even the Mayo clinic.
He recently went to a clinic in the states (Alabama, I think?) where the Dr told him his recent seizures (last couple of years) were unusual - "fibromyalgia doesn't cause seizures" he was told.
Retesting found the cause - Lyme disease! They could even determine when he got it - a trip to Florida.
I guess a dozen years ago, in Canada, Lyme disease would not have been something a Dr would look for.
Treatment with heavy duty antibiotics are starting to work.
Ever heard of this kind of misdiagnosis before?

[Mary]

I have... but it's rare. It's also possible to have both!

[pembroke]

Lyme disease is still mistaken for other ailments, and
it continues to pose many other challenges, including
the following:
• It can be difficult to diagnose
• It can be troublesome to treat in its later phases.
• A number of different ticks can transmit diseases with
symptoms similar to Lyme disease.
• Deer ticks can transmit diseases other than
Lyme disease.


from: http://www.nlm.nih.gov/medlineplus/lymedisease.html

i know my husband has been complaining of sore joints for a while. when he goes to the dr next, i am having him request a lyme test. simple blood test is all it takes to diagnose/rule out.

[QueensU_girl]

I knew of a man who was diagnosed with MS, or some other rare thing. It turned out to be Lyme Disease.

Wow, huh?

Emma

[DominoPhreak]

Actually, Lyme diagnosis isn't as simple as a blood draw. There is a widespread misconception that Lyme can only be there if there is a "bulls-eye" rash and the ELISA/Western Blot tests come up completely positive.

Problem is:

• Bulls-eye only shows up in 30-60% of people with Lyme Disease
• ELISA test is used as a simple "screening test", but rather than be 95% accurate, there are way too many false positives and false negatives to be reliable
• Western Blot test has to be sent to a lab that doesn't just send a Positive/Negative, but a lab that specializes in Lyme testing and who report on all the allergy response "bands"
• A negative Western Blot doesn't rule out Lyme Disease, it just means that your body's immune response may not be actively fighting the bacteria, which can hide in body tissues and blood cells for years
• (Big One) The diagnosis of Lyme is a "Clinical Diagnosis", which means Doctors can't just rely on Lab Tests. They have to look at the whole history, symptoms, patterns of illness over the last several years, family accounts, and take into consideration. Since each Family Practice Doctor spends a meager 5-10 minutes with each patient on average, this is hardly ever enough time to chit-chat, let alone give the Doctor enough information and history for them to make a Clinical Diagnosis. Sadly, Doctors have forgotten that it's the Patient they are trying to treat, not the Lab Tests...
• (Bigger One) Most Doctors still think Lyme is rare, not a problem in their state. Lyme is second only to AIDS in the number of new cases across the USA! If somehow a person is lucky enough to have the rash and test positive on their ELISA, they think that they only need 60-90 days of antibiotics to kill it off. This may be true for recently exposed cases, but if given a year or more untreated, it can turn into Chronic Lyme Disease, which many Lyme-Literate Doctors (LLD's) think is not even curable.
• (Biggest One) There is a national Witch Hunt in the Medical Community to run any Doctor who is actively trying to treat Chonic Lyme Disease out on a rail. There are only a handful across the USA who actually know what they are doing, and every one of them has and will have some sort of disciplinary action taken against them and possibly their licenses suspended until they comply with the idea that Lyme isn't a problem, and that there was no growing epidemic.

My wife was infected 18 years ago when she was in Middle School, and we didn't find out about Lyme disease until 3 years ago. Before then, we bounced around between different Doctors with diagnosises of Fibromyalgia, Chronic Fatigue, Rhumatoid Arthritis, Anxiety Attacks, all with little to no relief in pain or quality of life.

We were luckily able to find a Lyme-Literate Doctor 2 hours away from us, and of all the time my wife has been sick, it wasn't until he started to treat her with high-dose pulsed antibiotic therapy that she started to actually improve.

Both of our children were infected in the womb, so we have to look around for a Lyme Pediatrician, which there are even fewer of than regular Lyme Doctors in the US.

On top of the bacteria from Lyme Disease, there can be several other co-infections that come along with it that can cause Malaria-like symptoms among other things, and these need to be treated before the Lyme Disease itself can be treated.

Since finding out about the diagnosis, my wife has started looking around at some of her friends and aquaintances who have been suffering from Fibromyalgia-like symptoms, and as of now 3 of them were diagnosed as Lyme Disease, with a few more who are trying to find a Doctor who will run the appropriate tests.

Please, if you or anyone you know is suffering from Fibromyalgia, Chronic Fatigue, Rhumatoid Arthritis, and traditional treatments offer little relief, have them read some of the links below, and talk to their Doctor over and over until they run the appropriate test, or decide to go to one of the Lyme Literate Doctors (while they still can).

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

http://www.lymediseaseassociation.org/

http://books.google.com/books?id=Sok...sec=frontcover

http://www.canlyme.com/labtests.html

[QueensU_girl]

I'm surprised he was ever dx'd with Fibro. Men with Fibro are less common than women.

People who get that label are often ignored by the healthcare system, so i am not surprised at all to learn of his misdiagnosis.

Yes, I do not know what idiot doctor would chalk seizures up to being "part of FMS".

Glad to hear your friend got to a GOOD specialist!

The closest thing people with Fibro get to seizures are sleep muscle jerks and movements (e.g. RLS/PLMs and bruxism/TMJ).

[DominoPhreak]

Honestly, I think everyone dianosed with Fibro should take a look at the list of symptoms of Lyme Disease. It wasn't until my wife and I started to investigate that we saw a lot of symptoms that were not explained by Fibromyalgia/Chronic Fatigue/Arthritis, or that we noticed but were never asked if she exhitibed the symptom or didn't think to bring it up.

http://www.lymeinfo.net/medical/LDSymptoms.pdf

[Desperate1]

Thanks for posting this. I was diagnosed with fibro last spring after being ill for several years. Since then they've also been doing repeated MRIs, etc, because my doc also suspects MS. But I've always thought Lyme. I'm seeing an LLMD (Lyme Literate MD) in February, and keeping my fingers crossed.

From what I hear, Fibro can be a symptom of Lyme and Lyme is often misdiagnosed for exactly the reasons stated here. My ELISA and Western Blot were negative for Lyme, but my Western Blot results read "Abnormal" and my regular doctor didn't question that. All she did was look to see if Lyme was indicated per the CDC criteria, which more than half of Lyme sufferers don't meet anyway.

[DominoPhreak]

Desterate - did your Western Blot just come up with a result of "Abnormal", or did it actually list out the "bands" and how you reacted to each like the test from IGeneX does?

If it did list out the bands, I know a few good places where you could read up on what each of the bands means.

I've read an account of a LLMD that says usually if you are even looking for Lyme and the Western Blot comes up as anything as perfectly normal, there is a pretty darned good chance you're dealing with Lyme.

If you have any more Lyme related questions, I'd suggest the LyneNet's forums: http://flash.lymenet.org. They have a lot of good info, as well as a great resource to ask others of their experiences and suggestions on dealing with the symptoms, (not to mention a great way to learn how to support LLMD's who are currently being raked through the coals, and support for legislation changes and Lyme research).

[Desperate1]

Hi there! Thanks for the info, I really appreciate it.
According to the nurse at my doctor's office, the only band that showed positive was 41 IgM, which apparently shows positive for virtually everyone according to her, but that's why the result was abnormal. So I have to get my hands on the actual results to know if every other band was clearly negative or if there were any of those IND indications or whatnot. Ha, like I know anything about any of this~!

[DominoPhreak]

Originally Posted by Desperate1

According to the nurse at my doctor's office, the only band that showed positive was 41 IgM, which apparently shows positive for virtually everyone according to her, but that's why the result was abnormal. So I have to get my hands on the actual results to know if every other band was clearly negative or if there were any of those IND indications or whatnot. Ha, like I know anything about any of this~!

You should also see what Lab it was sent to. There is only 1 lab I know of that specializes in the handling and processing of the Western Blot for Lyme test, and that's IGeneX. There are several other Labs that will do the test, but none of them have the experience and equiptment specifically tuned to look for Lyme.

You also need to make sure that the samples get to the Lab quickly. IGeneX requires that you send the specimines via FexEd 2nd Day delivery, and requires that you have the blood drawn on a Monday-Wednesday so they will recieve it during normal business hours and are able to process it without waiting over the weekend.

Here are a few tips from a LLMD on getting an accurate Western Blot:

You get what you pay for, so use a lab that specializes in borreliosis. The right way to process the Western blot specimen means for the blood to be drawn and express mailed early in the week.

Research shows the borrelia antibodies have the potential to clump together, resulting in false negative test results. So far, unclumping has not been practical for laboratories to do.

The fresher the specimen, the more accurate the test results. Patients at our office are scheduled Monday, Tuesday, or Wednesday if testing is to be done.

This way, express shipping will assure that the specimen does not spend the weekend sitting at the post office. This is the right way to test and ship borreliosis specimens.

[Desperate1]

Heya Domino,
Many thanks for the link, I am learning a lot which is good because I have an appt with an LLMD in a month.
The lab that was used was Quest, which I hear is not the best for Lyme testing, and the blood was drawn on a Thursday morning. I got my results in the mail Wednesday of the next week. Considering the struggle it was to get them to do a western blot, this was an amazing turnaround time.
I wish I could use Igenex but I can't afford it. My insurance covered the Quest labwork, otherwise I couldn't have had it done. I'm lucky to live fairly close to one of the only LLMDs who takes insurance, otherwise that would be out of the question too.
I'm not sure what the LLMD will say or do, but wish me luck. I'm tired of being tired and I want my life back. I want to get back in the workforce and get back to being able to move and function like a woman in her early 30s instead of feeling like a truck ran over me all day every day!

[DominoPhreak]

Originally Posted by Desperate1

Heya Domino,
Many thanks for the link, I am learning a lot which is good because I have an appt with an LLMD in a month.
The lab that was used was Quest,
...
I wish I could use Igenex but I can't afford it. My insurance covered the Quest labwork, otherwise I couldn't have had it done. I'm lucky to live fairly close to one of the only LLMDs who takes insurance, otherwise that would be out of the question too.
I'm not sure what the LLMD will say or do, but wish me luck.
...

Just as an FYI - most LLMD's will require a positive (or suspicious) IgG or IgM test result, so you may end up paying the almost $400 for the test out of pocket anyways, (but it's a good idea to go first and see what they say).

You are lucky that the LLMD takes insurance, because most of the ones I know are dropped pretty quick from the Insurance Companies and you usually have to pay out-of-pocket for the visits as well.

Luckily, many of the oral antibiotic treatments are covered, but if you have to go intra-veinous, you may only be able to have that covered for a set time period based on your insurance coverage.

It's a harsh reality, but diagnosing and treating Lyme Disease ain't easy or cheap.

[Desperate1]

From what I hear of the LLMD I'm seeing I guess he'll treat based on a clinical diagnosis without a positive Western Blot for patients who have been sick for a while and possibly have chronic or late lyme. I've been sick for four years. They said MS, but I don't buy it. And from what I hear, some docs now think fibro and cfs are maybe symptoms of Lyme. So I'm very hopeful for this upcoming appointment. I'm also going to ask him to test for other things too and not just go straight for the Lyme dx without ruling out other things. My regular doctor tested for the usual suspects like thyroid and B12, but not for heavy metals or adrenal insufficiency, and I think I'd like to cover all bases, so I hope he will be helpful with that.

I hope he doesn't tell me to get off adderall during treatment. I'll be a mess, especially if the anti-biotics don't work.

[Desperate1]

What do you know, I was diagnosed with Lyme. The LLMD I'm seeing has a theory that fibro and cfs are caused by Lyme (I don't think he thinks this is always the case). I don't know if that means I can be cured of Lyme but will always have fibro (I hope not!) but in any event I've started treatment and hope to see some diminished symptoms soon, though he says I have chronic lyme and have had it for years so it may take up to a year and a half to treat.