Hi... I am new to Lyme Net and just received my lab results from iGeneX as follows: IGM - Band 41 + IGG - Band 39 IND Band 41 + Band 58 + Band 83-93 ++
So what does all of this mean? I started with a sudden onset of tachycardia and sob 3 1/2 years ago that has progressed to neurological, gi, cardiac, autoimmune sx (dx of hashimotos, and POTS) that come and go at various times.
I have been to MAYO, Johns Hopkins, numerous physicians (all a complete waste of time)!! So is this a positive "chronic" Lyme? What about the band 41 in the IGM?
What do I do next? I used to run 5 miles per day p90x now there are days I am sob just walking the dog!! and ice pick headaches everyday....neurologist is convinced I have hormonal migraines and put me on Topamax.(hate medicine BTW)
Last comment from him was that I had "anxiety"...haven't been back! There are periods of time that I feel great, and then it all comes back....uggghh!! Any help would be greatly appreciated!! I am thrilled if I have FINALLY found what could be wrong...I have always been so healthy and have never had any more than a cold, much less a headache!! Thanks in advance!!
[ 11-09-2013, 05:59 PM: Message edited by: Lymetoo ]
Posted by Lymetoo (Member # 743) on :
Here is a great explanation of the Western Blot... also read the replies on this thread:
The first thing you do is find the best LLMD you can find. Not many options in FL. Go to Seeking a Doctor and ask for help finding one.
Posted by GretaM (Member # 40917) on :
Hi there,
Have you posted in seeking for an LLMD?
Your experience with the neurologist sounds a lot like mine.
Your western blot, if done by a neuro, will be "negative".
If done by an LLMD, you will be told the bands you were positive or IND on are borrelia specific. (41 is a flagellate band-a means of how bacteria scoot around-not lyme specific).
My opinion: don't waste your time anymore with "specialists" and find yourself an LLMD as soon as possible. I wasted so many years chasing my tail with various diagnoses, each time hoping I would feel better. Each time getting worse.
An LLMD will do a thorough assessment and base a diagnosis on your clinical symptoms. (Which is how lyme is properly diagnosed)
And be prepared to start taking pills if you are dx'd with lyme. But believe me, it is worth it.
I feel better in the last six months since starting treatment than I have in 12 years.
Greta
Posted by GretaM (Member # 40917) on :
I forgot to add that an LLMD will also treat you for coinfections. Which is necessary.
Tick bites are the gifts that keep on giving...
Being out of breath is a symptom of babesia, a common coinfection.
I am suffering with bartonella currently. If I saw a regular doc-there is no way I would have even been diagnosed with it, let alone be receiving effective treatment.
Best of luck
Greta
Posted by TF (Member # 14183) on :
This test result says that you have lyme. This is based on positive band 41 and very positive band 83-93. The IND band 39 is a weak positive also.
It doesn't matter if the positives are in the IgM or IgG when it comes to lyme disease. If you have had lyme (your symptoms) over 1 year, you are considered chronic.
I only know one decent lyme doctor in Florida and he is in Tampa. Let me know if you want the name.
Here is a quote for you explaining the Western Blot for lyme:
"Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands. 55KD, 60KD, 66KD, and 73KD are nonspecific and nondiagnostic." (page 7)
I suggest you read and study the Burrascano Guidelines to learn about the disease that you have and to find out what good lyme treatment looks like.
Getting the correct diagnosis is half the battle. Congratulations!
LLMD stands for lyme literate medical doctor.
Posted by Lymetoo (Member # 743) on :
From the link I posted above:
Band 83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
Band 93: The DNA or genetic material of Borrelia burgdorferi.
Posted by momof2boys (Member # 42704) on :
Thank you for the replies and great info!! And unfortunately I have heard there are not many choices for LLMDs in FL. I would love the name of the one in Tampa to research, as well as I may look out of the area. Thank you again...
Posted by Lymetoo (Member # 743) on :
Best wishes... and be sure to "hang with us!" We'll get you through this!
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