My rheumie is following my treatment with my LLMD. I pulled him on board in case I have problems with my insurance. He said that he will follow procedures followed by LLMD in the future if needed.
Anyway, he sent me a message saying he thinks I should have another Wester Blot done. Wants me to run it by the LLMD. He wants Bartonella re- tested too. I don't really see the need for this right now since I am only a few months into treatment. I think he is just doubting my lyme dx since I am not positive on lab work.
Igg 23-25 IND 30 ++ 31 IND 34 IND 39 IND 41 ++ 45 IND 58 ++ 66 IND
IGM 31 IND 39 IND 41 ++ 58 IND
My results from Igenex Bartonella say if IGG is greater than 1:40 it is postive. Mine was 1:80. Although, my IGM was negative.
These results were enough for my LLMD to start treatment. Now I feel the doubt eating away at me. I know it sounds stupid but I guess I am just looking for some reassurance.
Paying for these tests again would really do some damage financially at the moment. He didn't say I had to get them done..he just suggested it.
I really don't see any need for it, LLMD said awhile ago that I didn't need to...any opinions??
Thanks, kit Posted by Jadedemolush (Member # 9090) on :
Do you have many of the lyme symptoms? If so then I would not move forward with any other tests, but begin your treatment.
Posted by kitkat32 (Member # 9682) on :
Yes I do. I think I can be a poster child for Lyme disease. I have had it for 10 years. Although, I have previously been dx'd with everything under the sun...with no testing backing up any of it.
I have been very anxious since the beginning of this long lyme journey but for some reason this question of re-testing is making me really nervous.
Thanks, kit
Posted by kitkat32 (Member # 9682) on :
Oops..I forgot to ask this question.
Since we all see different LLMDs, I was wondering how many of them consider IND as a positive on your Western Blot?
Thanks kit
Posted by bettyg (Member # 6147) on :
did you test thru Igenex and WHEN was it done?
I'd ask WHY does he want to retest now & you can NOT afford to do it financially.
Medicae pays 100% for the testing. IGX is $190 for western blot igm/igg blod test andreuires you to DOWNLOAD THEIR FORM with drs. signature, his dignosis code, etc.
Write on it to FAX results to MD, and snail mail results; mine were lost 4.5 weeks! Bettyg
Posted by treepatrol (Member # 4117) on :
Let the LLMD talk to him explain it? Also give him copies of Dr b's recomendations.
Posted by shazdancer (Member # 1436) on :
Having it for 10 years, it is not unusual for the testing to be equivocal. Your immune system may be suppressed by the disease.
Perhaps someone can speak to whether those positive bands are specific for Lyme, but I agree -- you have some indication + symptoms, don't re-test if you suspect a doc is just looking for the test to be more negative. Start treatment.
Regards, Shaz
Posted by kitkat32 (Member # 9682) on :
Thankyou everyone for your input.
I sent my rheumie an email today saying that I would not retest at this time. I don't see the need for it.
My tests were done last year through Igenex. I don't remember all the tests I had done and I am too tired to look right now but it was around 600.00 for everything. My insurance covered 12.00 of it. I find thier generosity overwhelming.
I have calmed myself down today. Igot real paranoid last night until I pounded into my own head that my rheumie is NOT an LLMD. I am happy with the results that I have.
Thanks again and everyone have a good day...kit
Posted by Michelle M (Member # 7200) on :
quote:Originally posted by kitkat32: Igg 23-25 IND 30 ++ 31 IND 34 IND 39 IND 41 ++ 45 IND 58 ++ 66 IND
IGM 31 IND 39 IND 41 ++ 58 IND
Good GOLLY, girlfriend.
I see lyme specific bands all over the place.
Correlated with your poster-child symptoms, I can't think of a single llmd who wouldn't treat you based on a western blot like yours.
Your rheumie is a quacking duck.
You're so smart to just chirp at him politely.
Read the Western Blot info on our Newbie Links, which is 'stuck' to the top of this message board. It has some good info. I swear you don't have to read all 6,502 pages just yet -- just that section!
On your IgG, just for your info, the 30 band is considered essentially the same as the 31 band, and it's double-starred, so it's plenty positive.
If you went OFF of antibiotics for several weeks and retested (and please don't take this to mean that you should because I don't think you should), I would bet that your blot would be pluses all over the place.
But all of us, you, and your LLMD know that.
Your blot shows a very tired immune system trying to fight.
Your rheumie needs to get better educated, join ILADS, and learn more about tickborne diseases and the immune system. You should not have to pay $600 for his education.
Now, don't you stress any more over it. Focus on getting better, and keep us posted!
Michelle
Posted by kitkat32 (Member # 9682) on :
Thank you Michelle for the positive advice. Sometimes I need it when I start to doubt myself.
My rheumie is fairly new, he just finished his fellowship. I haven't kicked him to the curb because he seems willing to learn. When I first mentioned lyme to him he gave the typical it can't be lyme answer. Now he is really open to it. He seems interested in learning and even said from now on he will be sending his lyme testing to Igenex. Sometimes his duckness shines through but I can usually persuade him into being more open. He doesn't really understand how to read results yet so I am going to give him some literature to read over at my next appt.
Thanks again for the reassurance. It means alot to me.
kit
Posted by 5dana8 (Member # 7935) on :
hi kitkat32
here are two articles I thought you might find helpful hope you are feeling better soon
![[dizzy]](graemlins/dizzy.gif)