I had lyme titers done 2 months ago for symptoms consistent with lyme disease. Took 3 weeks of doxycycline, and referred to Infectious disease doc because GP says lyme disease doesn't exist in Arkansas.
Went to the infectious disease doc today and in going over my test results he said I don't have lyme because I only have 2 positive bands (23, 41) on IgM which are false positives because they are found in most everyone, and I have no positive IgG bands.
I am still having alot of horrible symptoms, and in reading over some of these threads on this site, if I am understanding it right...this is positive lyme in the early stage which is what it would have been when I was tested.
He also said that he was not going to re run the lyme titers because there was no need. But again if I am understanding right this is because in order to have to report it to the cdc and make an actual lyme diagnosis
I would have to have 5 IgG bands present at least 4 weeks after acute infection so he doesn't want to chance running the test again and finding that and having to report it right?
So am I beginning this long horrid journey of no help with my persistant symptoms that are obviously Lyme so many of you have had to face?
[ 09-20-2012, 08:02 PM: Message edited by: Lymetoo ]
Posted by Lymetoo (Member # 743) on :
I hope you will forgive me for editing your post. Please put space between your sentences so those with vision problems will be able to read it and then be able to help you. Thanks!
The first thing I would do is RUN from that IDiot Dr!! He is clueless!!
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa." -- Dr C of MO
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Band 23 is SPECIFIC FOR LYME. Nothing else can make it show up.
How long have you been ill?
Posted by drwlyme (Member # 38984) on :
Not offended in the least.
As I said so new in this, onset of acute infection was only 2 months ago.
I have alot to learn!
Posted by Keebler (Member # 12673) on :
- You do not need another lyme test but to find a doctor who will allow you adequate treatment. Three weeks of a single Rx is not enough.
Hope you find what you need. You will not find it with regular doctors or even with Infectious Disease specialists. Here's why:
Lyme Disease - Studies on the Cystic Form of Borrelia bergdorferi
Mechanisms of Persistence - 17 page PDF See Table of Contents on Page 4 -
Posted by Lymetoo (Member # 743) on :
Good!! I wasn't sure. There is hope for complete recovery IF you find a doctor who knows what is going on. There is PLENTY of Lyme disease in Arkansas! Trust me!!
If there are ticks, there is disease! I'll send you some info.
If I'm not mistaken, Bands 23 and 41 on the IgM means it's positive.
Someone correct me if I'm wrong.
Posted by Keebler (Member # 12673) on :
- IMO, ANY positive band with "horrible symptoms" requires assessment by an ILADS educated LLMD and I would bet that it is lyme, indeed.
But, you could also have coinfections along with that. A LLMD should be able to help.
Hold on. Yes, you can get better but it's not easy because of the politics of lyme.
In early august High fever (103 to 104.5), sore neck, throat, muscle spasms, body aches, spotty rash on arms, chest and abdomen, 1 itchy bite mark with no bulls eye and never saw a tick.
GP put me on keflex 3days later still the same, changed antibiotic to levaquin, 2 days later still the same. Lyme titers ran Started on doxycycline, 2 days later fever gone, rash gone, sore throat and neck gone.
Lyme titers back positive 18 more days of doxy but remaining symptoms persist, plus joint pain, burning feeling in hands and feet, numbness in arms and hands, and severe dry mouth, and sever fatigue.
GP then gives me flexeril for spasms and sends me to ID doc which I saw today and he does nothing but run tests for lupus, HIV, Parvo virus, and ANA, and rheumatoid panal, and says come back in 2 weeks.
I am so appreciative for any help or suggestions. I hurt so bad and I am so tired all the time!
Posted by Keebler (Member # 12673) on :
- ALL your symptoms could be lyme.
Lupus is often a wrong diagnosis. I was misdiagnosed with lupus when it really was lyme. I was also misdiagnosed with basic connective tissue disease, MS, CFS, mood stuff, you name it.
When the tests come back, get a paper copy sent to you so you have that. Some of the detail can be helpful for the LLMD whom I hope you find.
In the meantime, there are some things you can do for yourself.
I suggest a basic "survival" approach:
AVOID alcohol, sugar and processed foods or any food with additives.
Dry Mouth - help -
Posted by drwlyme (Member # 38984) on :
I am a nurse so thankfully lived and continue to live a pretty healthy lifestyle, so before all of this I was strong and healthy.
Have for years and continue to take, probiotics, acidophilous, omega fatty acids, multivitamin specifically for women, cinnamon extract, barley, and kelp.
Also try to keep a healthy well rounded diet.
So now my mission is to read and find a doctor who will help me!
Thank you all so much for your help!
Posted by nonna05 (Member # 33557) on :
I am not//repeat not trying to scare you....
What part of AR are you in..you can pm me
My brother just died last year from this because of no treatment ..
In AR., lyme is there.
Your mission is to get on antibiotics and get a LLMD.
Even if you have to go to another doctor say whatever and get on doxy for now....do something. There are natural protocols also, but until you get more help at least get on ABX
To bad if he has to report it..it needs to be, cause it;'s there.......... . You will have to travel some.
I don't know who's good out there/.
first thing is don't let anyone give you steroids in any form,,even nose spray....
you must not wait.
so many of us here got pushed around, told were bonkers etc and are now fighting for our lives.
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