Lyme Disease

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moe1959

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I was researching and ran across a poor young lady that was diagnosed with m.s. ( Not convinced she went through yrs of searching). She lives in Canada and had 4 blood tests for lime disease. sp? Anyway all the tests came back negative. Finially after her persistance she found there were 2 places, labs that specialised in Lyme disease a. One is in Los Angeles, And the other is in Germany. Her results came back posative. Interesting.
 

vickythecat

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This story is a confusing one - as the very few details do not really match reality. MS is an illness that is very hard to misdiagnose - you need certain specific MRI results, a spinal cord tap as well as the 'fatigue/pain' symptoms. As with anything, all other illnesses also need to be ruled out.

But there is of course the whole story of testing for Lyme disease - you do hear more and more that normal labs are not capable of diagnosing Lyme disease and that people often have to find a specialist. That is definitely one important area that the medical community has to look into. Especially for us here, because fibromyalgia and Lyme disease are look-alike illnesses, and without a proper diagnosis, you don't get the right treatment.

I wonder how many of us here have been tested for Lyme disease? I haven't.

Should it be included in all the tests we have gone through in the whole elimination period (for the final fibromyalgia diagnosis). I suppose it should. But doctors are reluctant, aren't they? And then you do get a negative blood test once and you are cleared of it. Being a patient can be so frustrating and difficult.
 

Pegleg84

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I was tested for Lyme during the illimination process. Actually, the first question the doctors tended to ask when told my symptoms is "Have you been bitten by a tick". Nope, but they tested anyway. Of course, the limitations of testing for lyme means that even if I had had it, it might not have shown up. Here in southern Ontario and other parts of Canada there has been a marked increase in ticks carrying lyme, so many doctors are being more vigilant, but sounds like getting a proper diagnosis if it was ruled out in blood testing is still difficult. Aparently you don't produce antibodies until the disease has gotten bad enough to trigger your immune system, and once it's full blown it can't produce them anymore, so positive testing can only be done in a limited time frame. Also, something about Canada testing for strains found in the US, not the specific strains found in the area. (Been lots of talk about this lately).

Of course, I have a friend who was bitten, found the tick that night, removed it, and went straight to emerg. They gave her a round of antibiotics to prevent infection and she's fine. Sounds like a good way to deal with known bites, and then test later if symptoms show up.

As for the MS thing, yeah, that sounds like a really bad misdiagnosis. I'm pretty sure I heard about this story: basically, you must have MS cause there's no lyme in this area. Testing a treatment has to get better.
 

links56

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I've been tested for Lyme disease multiple times, turns out the best test is only right 60 or 70 percent of the time. The best test is not the test they use commonly you have to ask for it specifically and it is very expensive. The test they do is only like 30 percent accurate or something like that. When I was at Mayo clinic for fibro I met a lady who had been battling fibro for 20plus years and originally she had been bitten by a tick but they gave her the test and it came back negative so they started all the other tests and ended up diagnosing her with fibro. Still convinced it was Lyme she has the test done yearly and every year it came back negative, until she went to Mayo and they gave her the better test and it came back positive. I remember at the time researching it and found lots of similar stories.
 

vickythecat

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Still convinced it was Lyme she has the test done yearly and every year it came back negative, until she went to Mayo and they gave her the better test and it came back positive. I remember at the time researching it and found lots of similar stories.

These stories really scare me in a sense. Years ago I did notice a tick-bite like thing on my upper arm, my sister was also shocked to see what a weird bite it was, at such weird spot as well. We are city girls and only ever got bitten by mosquitoes! So a google search said it could be a tick. I never thought much about it for years - until I started hearing all of these Lyme disease & fibro misdiagnosis stories.

I was wondering does the treatment for lyme disease really cure people? I have not read much on the topic, but I did read/hear that the treatment can be hell, that for most the horrible treatment does nothing to improve the symptoms, but then I heard celebs saying they were cured. I am just very confused on the matter - like everyone else I suppose!
 

links56

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I don't think you can completely cure Lyme disease, They usually treat it with high doses of antibiotics. If you can catch it right when you were bitten i think the chances are better. I know I have been bitten multiple times over the years and that's why I started researching it.
 

Tipnatee N

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I have been bitten by ticks before but not sure if it was the right ticks but it scar me for 3 years with weird rough patch skin rash a size of a dime on my shoulder. Yet I have been tested negative for Lyme so I didn't even ask to get any more test after that since i haven't seen any bullseye mark on my skin yet. Plus most of the time I lived in NYC and all bugs bites always making my histamine gone crazy , the only horror so far I had with bugs beside mosquitos was when I went to visit my dad in Texas and the hotel I booked didn't get my reservation , so ended up having to book a quick hotel room in some shady hotel near by the high way and ended up with bed bugs problem . That was the worse of the worse , if there were any deer ticks among those I wouldn't have known the different cause I was completely swollen from neck down to toes the pains and intensive itchiness last for 3-4 months. I looked like I was wearing a permanent pink clown prints bodysuit. I burnt everything that was with me at that hotel . I think perhaps the intense bugs bits panic paranoid I have now do to fibro might be related to that trauma it self.
 

sunkacola

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I have lived and done gardening and landscaping work in Mexico and been, in spite of precautions, covered in ticks by the end of the day. Pulling fifty or more off me every day. Also have had ticks invade my house in the USA, and get on my dogs, again pulling them off by the dozens.
No Lyme disease.

I think it only exists (so far) in certain regions, primarily wooded areas of the NE in the US. So far it has not spread much to other regions. So far. But I knew a woman who went on holiday to New York State, got bitten by ONE tick, got Lyme disease, and has battled the horrible illness for years now. It has ruined her life.

Lyme disease is another one of those things that was not taken seriously for many years. If you have the chance, watch the documentary called "Under Our Skin", which is about Lyme disease and how poorly it has been handled in this country.

As for MS, it is very often misdiagnosed by incompetent doctors who simply hear the patient's symptoms, do an Xray and decide they don't have arthritis, and don't bother with the other elimination tests and just tell them they have MS. This is very irresponsible but is not as uncommon as one would like to think. Has happened to two of my friends. And neither of them had MS. They had similar symptoms to MS but it was not progressive and in one of them eventually got better, so clearly that is not what she had.

There are so many incompetent doctors.
 
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