posted
I mentioned in my first post that my first Lyme test came back positive by CDC standards. IgM bands 23 and 41 were positive. All IgG bands negative.
On day 15 of antibiotics I went back to my PCP because of relapsing symptoms (fever, sweats, chills, muscle aches). She told me my 2nd test was negative. I found out today that the 41 IgM and IgG bands were positive.
I know that this is not positive by CDC standards. I also know that 41 is not a very specific band for Lyme.
Do these positive bands really mean anything since they aren't specific to Lyme?
Posts: 24 | From Boston | Registered: Nov 2008
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posted
You are correct, she is not an LLMD but a primary care provider. I am actually thankful that she even recognized the symptoms to test for Lyme in the first place.
The thing is that I am still very sick and having relapsing symptoms. She is wondering if this is even Lyme because my 2nd test was negative.
We are still trying to determine if the first test was a false positive. She seems skeptical that it is in fact Lyme. I am seeing an ID specialist on Friday.
Posts: 24 | From Boston | Registered: Nov 2008
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posted
An ID doc will also tell you it isn't Lyme. For some reason, a lot of doctors don't even consider it as a possible diagnosis. They think it' rare and false postives are common. In fact, Lyme is muchmore common than most docs think and false negatives are much more common.
What are all your symptoms? Did you have a bite when they began? What other tests have you had?
It takes much longer than two weeks of treatment for most of us to become symptom-free. If you were postive for Lyme on a WB and have symtpoms, you still need treatment, IMO.
posted
I do not remember getting bit by a tick and I did not have a rash that I know of.
I went to my PCP when I had flu symptoms that did not go away for 8 days. These were the first symptoms I had.
Prior to this illness, the last time I had any sickness was Strep 1.5 years ago.
I personally think going to an ID or LLMD is kind of like a catch 22. an ID will look for things other than Lyme whereas a Lyme doctor will only focus on Lyme. How can I know that I definitely have Lyme?? You know what I'm saying? I don't "need" this to be Lyme. I just want to know what it is so I can treat it.
I am trying to get in to see an LLMD in Boston as well. We are just waiting for a callback since my PCP faxed them my info. I will see both the LLMD and the ID doctor.
I confess I haven't read all of your previous posts to date. If I'm being redundant here, I apologize.
Has the possibility of Lyme Co-infections been brought to your attention as well? There are myriad bacterial/viral infections that can be transmitted to people at the same time the Lyme is being transmitted.
While it's certainly possible to contract only Lyme, it seems that the majority of the Lyme patients today also are co-infected. This requires additional treatment beyond treating for Lyme.
The testing for Lyme co-infections require different labwork from the Lyme western blotting. And sometimes this testing can be just as problematic as the Lyme testing because all of the strains of these pathogens that are infecting people aren't being tested for in labs right now.
Some of the commonly seen co-infections with Lyme are, Babesia, Mycoplasmas, Bartonella, Rocky Mountain Spotted Fever, Tularemia, and viruses such as HHV-6. This is not the complete list either!
Anyway, this is why the CDC, the FDA, and other organizations like the International Lyme and Associated Diseases Society state that Lyme diagnosis should be based on the physician's clinical judgment. That the doctors should not rely solely on testing results -- the testing sometimes can just be too limited at the moment. Clinical diagnosis requires the physician to include patient history, symptoms, risk of exposure, as well as labwork, I believe.
You're lucky that your primary care provider was astute enough to even consider testing and treating you for Lyme. That seems to be a rarity these days. So, kudos to her!
However, in order for a Lyme patient to find comprehensive and accurate continued evaluations and treatments, it's really recommended that you find a lyme literate medical doctor. These Lyme specialists are very knowledgeable about the complexities of Lyme and Co-infections.
I'm so glad that you're getting some answers. Lyme can be an overwhelming illness -- trying to learn about the issue can be overwhelming.
Hope this helps!
Fuzzy
p.s. Also, Lyme specialists usually recommend that treatment for Lyme continue until symptoms have been gone for at least 2 months.
Posts: 503 | From Maryland | Registered: Oct 2007
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
BOSTON!
Get a Lyme Literate Doctor!! ASAP
No such thing as false positive!! You were lucky to get a positve TWICE!!
If you have symptoms dont fret over test results.
Get treatment right away by a good lyme doctor. The longer you wait the harder it is to treat!!
I urge you: DONT WAIT!!
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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posted
Fuzzyslippers - I was tested for Babesia through Quest and it was negative. However I have read that there are many strands of it but the test only looks for only 1(or 2).
I have not been tested for any other co-infections but I will bring up Igenex testing at my appointment on Friday.
Thank you for all of your useful information!
Gemofnj - I am trying hard to get in to a well known LLMD in Boston. They require you to fax info over first which my PCP did. Now we are just wating for a call.
Posts: 24 | From Boston | Registered: Nov 2008
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We were posting at the same time. Sorry. After reading your most recent post I'll just offer this:
The LLMD's that I've seen have been quite thorough, actually. They have not only looked for Lyme. They have also evaluated me for other things that could have been causing my symptoms. I had lots of testing done.
The LLMD's do a more accurate and better job of including Lyme and Lyme Co-infections in the differential diagnosis is all. And if a patient does test positive for Lyme (like you have) they are far better equipped with the knowledge and experience to know how to treat this illness.
The ID doctors are under alot of limitations right now. Most of the limitations are self-imposed on their part. But, also their own governing medical board, the IDSA, prevents them from treating Lyme longer than a mere few weeks. The reasons are complicated -- but suffice it to say that it boils down to medical politics.
There is a veritable medical war going on right now within the medical world concerning Lyme.
Patients are far safer consulting with an LLMD to include (or exclude) Lyme from their health puzzle.
Perhaps some others can chime in here and explain the situation better than I have.
I don't want to overwhelm you with resources and info. I know you're not feeling well. But, if you're inclined, one of the best resources to explain the current Lyme situation and the difficulties in testing, diagnosis, treatment and the reasons justifying an LLMD is a book called "Cure Unknown: Inside The Lyme Epidemic," by Pamela Weintraub.
Also, there is a wonderful new documentary that is available on DVD now called "Under Our Skin." This also does a great job of explaining the situation. Trailers and excerpts of this documentary can be viewed at YouTube.
p.s. I tested negative for Babesia too on two separate occasions. However, I do have it -- I must have one of the strains that they aren't able to test for! My LLMD noted specific Babesia-type skin rashes on me, plus my symptoms were pretty much blaring Babesia.
So far we know that I have Lyme/Bartonella/Babesia/Mycoplasma Pneumonia. And I don't ever remember seeing a tick on me and never had a bull's eye rash that I knew of.
Posts: 503 | From Maryland | Registered: Oct 2007
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posted
If you were CDC postive at the onset of your illness, then I think it's highly unlikely that was a false positive. You are actually way more likely to get a false negative from Quest or any lab that does not specialize in tick-borne diseases.
Your western blots are probably CDC negative now because the antibiotics simply lowered your IGM antibodies.
I agree that you should could cover all your bases by seeing both an ID specialist AND an LLMD. With the ID specialist, be prepared that he or she may incorrectly dismiss any possibility that you still have Lyme or may just put you on another 2-weeks of antibiotics, which probably won't be enough to get rid of the Lyme.
I'm glad you are also making an appointment with an LLMD. If the ID specialist doesn't find anything, then the LLMD will be able to give you a more comprehensive assessment/diagnosis of whether you have Lyme and any co-infectins.
You may also want to ask your PCP (not the ID specialist!) for a set of western blots through Igenex. I think you can call Igenex yourself and request a test kit, but a doctor will need to authorize the tests. http://igenex.com/Website/
However having had a recent CDC postive Lyme test may make the Igenex western blots unnecessary for the LLMD. But if it takes several weeks to get an appointment with the LLMD, you'd have another lab test to help you assess your diagnosis if you get conficting information from different doctors.
Feel free PM me if you have any questions about Igenex testing.
Again, I think you are smart to see all these doctors and cover all your bases. Good luck!
Erica
Posts: 408 | From California | Registered: Apr 2008
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adamm
Unregistered
posted
A negative test means Absolutely Nothing. Don't let unethical/misinformed doctors destroy your life--go now and do whatever it takes to get enough doxy so that you can take 400mg/day for 3 months.
Seriously--I did one month of 200 right after my bite, and now, at the ripe old age of 19, I'm in an apparently unstoppable downward spiral towards dementia.
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