I remember having the rash (and being up north twice) within the last 5 months. I didn't show the rash to my dr (bad girl !!!) since at that time, I did not know what it was and then it disappeared. Well I woke up 2 weeks ago and could not move my joints - almost all of them!
Anyway, the Quest diagnostic test showed reactive on IGM band 23. Since IGM band 41 was not present, I was not confirmed by the CDC as being Lyme + and my dr is not convinced.
Since this is a lyme specific band, does this prove I have it?
I don't want to go looking for other excuses for my pain if this is what it is....
I have been on doxy now for 10 days (dr would only give me 30 days of 100 mg twice a day.
Thought I would see if anyone has information I can give to my dr that would help plead my case with he? THanks !
Posted by JessJoy (Member # 33443) on :
If you had a the rash, you have Lyme. Find a doc that believes you and treats with antibiotics.
Posted by c000834 (Member # 34378) on :
I am trying....its not easy in this part of the country - I made progress today though and found a dr that can see me next week - I am relieved beyond relieved as the LLMD closest to me booked me for Feb 27th!!!
Posted by Lymetoo (Member # 743) on :
To US, band 23 would be convincing .. since nothing else but Lyme can cause it. And yes, the rash would also prove it.
I'm sure you'll have more bands show up if you get a test thru a better lab, like Igenex.
Good luck with your appointment!! Posted by nefferdun (Member # 20157) on :
I sent you a PM. In case you don't know how to retrieve it -
There will be a flashing message alert at the top left above your name. You hit that and it takes you to the message.
It took me months to realize that was not just a blinking decoration!
Posted by sixgoofykids (Member # 11141) on :
The bullseye rash is diagnostic of Lyme. I had to travel to NY for treatment, most of us are not fortunate enough to have Lyme docs close by.
Have you seen Under Our Skin? It's available on Netflix and Hulu. www.underourskin.com Posted by hopeful4 (Member # 8486) on :
You may want to check out the ILADS website (International Lyme and Associated Diseases Society) at www.ilads.org
You will find lots of good info, including treatment guidelines. This could be helpful to you between the time when you see this new doctor, and when you get in to see the LLMD in February. 10 days of antibiotics doesn't sound like enough.
As others have said, the bullseye rash alone is diagnostic of Lyme Disease.
Best wishes.
Posted by searching4truth (Member # 28481) on :
You can also email ILADS and ask for Lyme Literate doctors in your area. I got the name of another doctor that I had not found any other place. He ended up being my doctor. This is the single most important thing you can do for yourself right now. You have caught it early enough that if you start treating with a LLMD now, you have the best chance that you will ever have. Many people beat this into my head when I was first diagnosed, and I am so thankful they did. Any other doctor will not be able to get you healthy. Lyme is too complicated. You are in the window of time right now. I hope you find the right doctor for you!
Posted by c000834 (Member # 34378) on :
thanks everyone - I did get an appt with a LLMD for next week - so happy!
Posted by t9im (Member # 25489) on :
c000834:
The diagnosis of Lyme disease is a mess.
Probably the best explanatin is by Tom Grier at canlyme, see link below.
Now your PCP will never believe the above BUT Grier is using the CDC's papers against them.
On the IgM the CDC used Engstrom et als findings by taking 2 of 3 markers YET this had a 20% false negative rate. "11 of the 55 patients were seronegative but did have physician-documented EM rashes" (so the test is specific but not very sensitive).
On the IgG they took Dressler et al (including Alan Steere) which required 5 of 10 markers (thier IgM was 2 of 8).
�Among patients with indeterminate IgG responses by ELISA, 6 of 9 patients with active Lyme disease had positive blots compared with 2 of 34 patients with other illnesses (P < .001).�
I have more research to do here and to me this shows the weakness of the ELISA and the Western Blot where the WB still had a 33% seronegative rate.
So both parts are specific but not sensitive.
One indication of why so many cases go undetected.
All part of the diagnosis part of the controversy. The CDC and Steere (he has a 1993 paper on it) felt the disease was over diagnosed and over treated. The two tiered standard came out in 1994 and lives on today.
Good luck and make sure the MD is a LLMD not an MD who "treats" lyme.
We wasted 8 months taking our daugher to the lyme experts in CT & MA before we found a LLMD.
Posted by Keebler (Member # 12673) on :
- With rash(es), and your symptoms sure seems to confirm this but I'm glad you will see a LLMD for a full assessment.
It's nearly impossible to get a CDC positive test as the cards are stacked against that, even in obvious, active lyme.
You should also be evaluated for other tick-borne infections that often travel with lyme.
By chance, did you take any photos of the rash(es)? That would help if you can find those.
But be sure this doctor really IS an "ILADS-educated" LL MD.
That does not mean the all treat exactly the same way as that depends upon the patients and also the doctor's view but to be "ILADS-educated" means they are familiar with all the work done by those doctors with ILADS, etc.
I hope you got the name from another lyme patient who had positive things to say about this doctor's scope of knowledge and ability to treat.
It's always good to ask at the local support group and get a range of reports.
Good luck. -
Posted by Keebler (Member # 12673) on :
ILADS - International Lyme & Associated Diseases Society
not to be confused with the IDSA, Infectious Disease Society of America.
While some ILADS doctors may be members of IDSA, they have expanded their knowledge base. For someone who is JUST IDSA, they will most likely discount lyme, even with a CDC positive, rash and symptoms.
The IDSA parameters for treatment are negligent, at best. -
Posted by t9im (Member # 25489) on :
Also with band being lyme specific it shows you've been exposed to the Lyme bacteria. Your body would not be producing anti bodies if it wasn't there.
Posted by c000834 (Member # 34378) on :
In hindsight I sure wish I took a picture of the rash....next time I see ANYTHING on my body, I will.
Watched the documentary "Under Our Skin" this morning, WOW - very enlightening....
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