View Full Version : Mis-diagnosis - Suffered for 10 years with Fibro diagnosis - turned out to be lyme di


Gregster
05-04-04, 08:22 AM
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
05-09-04, 03:10 AM
I have... but it's rare. It's also possible to have both!

pembroke
08-10-05, 11:13 AM
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
12-16-05, 08:12 PM
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
01-01-08, 12:19 PM
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=SokNhmzFERIC&printsec=frontcover

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

QueensU_girl
01-01-08, 01:41 PM
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
01-01-08, 05:26 PM
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
01-05-08, 03:13 PM
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
01-06-08, 12:14 AM
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
01-06-08, 06:34 PM
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
01-06-08, 09:07 PM
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 (http://www.igenex.com). 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
01-07-08, 04:59 PM
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
01-07-08, 05:46 PM
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
01-16-08, 12:19 PM
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
02-13-08, 12:23 PM
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.

Mary
02-13-08, 02:28 PM
my Fibro showed up after having West Nile virus ... needless to say that was a really rough year.

QueensU_girl
02-13-08, 06:39 PM
Yup, in another forum someone was asking if 'joint pain' was psychosomatic.

Sometimes you see stuff that sounds 'constitutional' turning out to be viral or infection related.

As a teen, I had MONO 2x which lead me to have a lot of problems with energy, concentration, alertness, sleepiness, fatigue, etc. etc.

People need investigation and information, not labels that dismiss them. :X

DominoPhreak
02-13-08, 09:42 PM
My wife and I just discovered that she also has a Thyroid problem on top of the Lyme that may be causing a lot of the symptoms that she associates with Lyme.

One of the foremost experts on Lyme says there is a very large population of people with Lyme that also have Thryoid problems that probably need to be on Thyroid meds.

We've had her Tryroid tested previously, but only using the TSH test, (which I have recently found out is next to useless on it's own for diagnosing Thyroid problems). Her TSH has been normal for years, (and still is), but when you check out the Free T4 & Free T3, we found there was a problem that need attending too.

Check out the following sites for more info on Thyroid problems:
http://www.drrind.com/thyroidscale.asp
http://www.stopthethyroidmadness.com/tsh-why-its-useless/

Many of the lingering symptoms of Lyme that she thought would never go away are on the list of Hypothyroid symptoms:

http://www.stopthethyroidmadness.com/long-and-pathetic/

Looking back, she has a Sister, Grandmother, and Aunt that look like they are all suffering from Throid symptoms, and we're going to get them tested as well.

She just started Throid treatment (Armour) this last week, and we're hoping that in the next 2 months she'll ramp up to a full dose (3 grains), and then we'll see if this helps with some of the firbo/pain/CFS symptoms that are still hanging around.

Check with your LLMD, and make sure he checked your TSH, Free T4, and Free T3 (any other Thyroid tests like Total/Uptake/T7/Ratio are next to useless). Check yourself on Dr. Rind's "Thyroid Scale" and see if you show the pattern for Hypothyroidism.

If you are, you probably won't be able to do much against the Lyme if your whole metabolism (and quality of life) is stuck in low gear...

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.

QueensU_girl
02-13-08, 10:14 PM
Sometimes thyroid problems (high/low) can be auto-immune.

I have read that pregnancy can trigger thyroid problems (pregnancy can challenge the immune system quite a bit; antibodies can be formed, etc).

Another RECENT environmental trigger that has been identified in thyroid dysfunction is an ingredient used in rocket fuel or jet fuel. Just read that a while back. Not sure if it is in air or gets into the water or what...

Desperate1
02-13-08, 11:30 PM
100% agree with all the above. My sister and mother have hypothyroid. I have strong symptoms of it. I think they dismiss that I could be hypo because I'm tiny, but not all hypos are overweight. My primary tested my TSH only, said it was normal and dismissed any possibility of a thyroid disorder. Before I knew about lyme, cfs and fibro I strongly suspected Hashimoto's, which is thought to be autoimmune. I went to an endocrinologist who told me my thyroid is fine. I still want a second opinion on that. I never did get a copy of the tests he ran, but it was a full workup and he is an endo so...but that was 5 years ago so things could well have changed.

Definitely worth pushing with the docs.

Thanks again for the great info!

DominoPhreak
02-14-08, 01:15 PM
Sometimes thyroid problems (high/low) can be auto-immune.
...

Auto-Immune Thyroid problems usually manifest themselves in one of 2 ways.

The body can build up antibodies against the TSH receptors on the Thyroid. This makes the Thyroid think it's time to produce T4 all the time, no matter what the Pituitary is saying out, (similar to your engine going faster even with your foot off the gas pedal). This is referred to as "Grave's Disease" and causes Hyperthyroid symptoms, and can be fatal.

The body can also build up antibodies against the Thyroid itself and periodically attacks it. The Thyroid is damaged, and lets T4 and T3 spill out, cycling between Hypo and Hyperthyroid symptoms, (and sometimes rapid-cycling Bi-Polar like behavior). This is referred to as "Hashimoto's Disease", and can leave your Thyroid almost destroyed if the damage is severe enough.

These can be diagnosed by checking certain Antibody levels using blood tests, along with the TSH/Free T4/Free T4 tests.

DominoPhreak
02-14-08, 01:34 PM
... I went to an endocrinologist who told me my thyroid is fine. I still want a second opinion on that. I never did get a copy of the tests he ran, but it was a full workup and he is an endo so...
The sad thing is that many Endo's just use the TSH, or even if they do use the TSH/Free T4/Free T3 tests they assume that just because your levels are within the "Normal Range" that everything is fine. The fact is you could be suffering from a form of Hypothyroidism that by definition doesn't show up as Abnormal on Lab Tests, yet can degrade your quality of life just as much as Overt Hypothyroidism (http://www.stopthethyroidmadness.com/long-and-pathetic/).

I really like how Dr. Rind puts it...


<TABLE cellSpacing=0 cellPadding=4 width="100%" border=0><TBODY><TR><TD align=left width="100%">If My Thyroid Labs Are ‘Normal’, Why Do I Feel So Bad?</TD></TR><TR><TD align=left width="100%">When’s the last time you went to the doctor and gave a blood sample – that was then sent to a lab? Chances are that lab result came back ‘normal’. Too often, when interpreting lab values, the doctor looks for normal rather than optimal.

A comparison of values relative to each other yields a great deal of information that would be lost if the values were viewed independently of each other. For example, if the normal height for a man is between 5’3” and 6’ and normal weight is between 130 lbs and 200 lbs., scanning the results column of a lab or other report (for flagged abnormal values) would declare a man who is 5’3” tall weighing 200 lbs to be just as normal as a man 6’ tall weighing 135 lbs. Both are in the ‘normal’ range and therefore would be considered normal. In reality, however, simply looking at a short/obese man next to a tall/thin and a possibly undernourished man would suggest that the two are more than likely not in the same state of health.

Normal rather than Optimal. The frequently used term of ‘normal’ refers to a mathematical or statistical situation. Thus, a ‘normal’ state of health probably means you have some medical problems. It may be normal to die at 76 yrs of age, but at 75 years old, you may decide that what you really want is ‘optimal’ health as opposed to ‘normal’. Normal is not the same as optimal, whether it relates to longevity of life, a body temperature or a lab test result.



</TD></TR></TBODY></TABLE>
I'm sure you have already had quite a time finding a LLMD, but it looks like finding a Doctor who uses Optimal instead of Normal lab values to diagnose and treat Hypothyroidism may be almost as difficult. Read up on the sites listed above, and pay attention to the section about common mistakes Doctors make, (http://www.stopthethyroidmadness.com/give-me-a-break/) and how to find a new Doctor (http://www.stopthethyroidmadness.com/how-to-find-a-good-doc/)that will take Thyroid treatment seriously without relying solely on "Normal" lab values.

(Did you know that the TSH test wasn't even invented until 1973, and before then they just treated based on symptoms? It's kind of ironic how an advance in medical science could lead to a disservice for those with Thyroid problems..)

You may have to push your Doctor to do the right thing, but as owner and operator of your own body, you have the right to demand the proper treatment and to be taken seriously about how your body works and feels.

Desperate1
02-21-08, 04:25 PM
Amazing:
http://www.openeyepictures.com/underourskin/uos_description.html

icedcacti
11-20-08, 12:38 AM
Yikes people, I didn't have time to read all the posts but am pretty shocked so many people experienced a lyme disease-related misdiagnosis. My mother was misdiagnosed with lupus when I was 8, and she spent the next 8 years begging doctors to help her, test her for other diseases, etc. She was always too sick to go anywhere, often couldn't get out to even check the mail, would vomit up bright green stomach stuff, was really thin, yada yada yada. She heard maybe into her 5th year about lyme disease and requested tests, but the drs wouldn't listen (we lived in a really backwoods county). Finally she found some other doctor her 8th year who did all the blood work, found nothing, and finally tried testing her blood for something related to herpes (sorry I totally can't remember right now), because there's something about the lyme virus that looks identical to it in bloodwork. He put her on antibiotics for some time and she got better!!! She'll never be completely better, but I'm so thankful she never had the serious neurological effects of it.

bailee33
11-20-08, 02:39 AM
I was wondering if anyone knew if there was some sort of connection between Lupus and Lyme Disease? After reading several articles on LD I find that I suffer from many of the same symptoms.

I had a difficult time sorting thru all the articles and trying to find out how I would go about ruling out one or another.

Thanks

Schroeder
05-28-09, 12:47 AM
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?

Yes, my dad had this exact same situation, albeit with different results. He has had Chronic Fatigue Syndrome for the last 30 years. 6 or 7 years ago, the doctors discovered he had Lyme Disease. He got treated for it and it helped a bit, but he still suffers badly from CFS, so it didn't solve his overall problem. But we thought it was pretty funny that he had it...he'd been everywhere from the Mayo Clinic to the Hippocrates Health Institute and countless doctors and specialists in-between and no one had ever picked it up :D