posted
Thanks so much for the quick response. Yes, those were bands detected on my Western Blot through Stony Brook - the only thing is, I am seeing what is supposed to be a Lyme literate doctor, but she wants me to get all sorts of MRI's, scans, and a spinal tap which is going to cost me thousands. Based on my reading, I have specific bands, but I am not sure what it means for a diagnosis.
Are these bands enough for a clinical diagnoses? I am from the north east but live in Los Angeles and I don't know what to do next. Should I seek treatment in another state?
Thanks again.
Posts: 7 | From Los Angeles | Registered: Apr 2019
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Jess
You my dear have been exposed to Borrelia burgdoferi (Lyme). Your test results are not CDC positive (up to 70% are sero-negative due to flawed and out-dated test).
Any ILADS Lyme Litterate Medical Doctor would immediately start treatment.
What are your symptoms? Lyme Disease remains a CLINICAL DIAGNOSIS. Based on symptoms, exposure, and testing.
Antigens (bad guys) are bacteria, viruses, fungi, ect that cause infection and disease. Antibodies (good guys) are immunoglobulins produced by your immune system to fight the antigens.
Most main-stream doctors order tests that look for antibodies. The problem with this is Lyme and company disable your immune system from recognizing the antigens, (change form, change outer surface proteins, drill into tissues so as no longer in the blood, etc.)
From your test, it looks like your immune system is fairly functional in recognizing antigens. Some LLMD'S say that this is a patient that will do well with treatments.
A tick is a sewer. A tick can transmit pathogens of bacteria, parasites, fungi's, protozoans, and viruses in a single bite. Co-Infections are the RULE rather than the EXCEPTION ;
My suggestion to you would be to contact ILADS for a physician referral. Your doctor does not seem to follow the ILADS guidelines.
43% of Lyme positive antigens patients, had NO evidence of antibodies in CSF Spinal taps. 47% of Lyme positive antigens patients had normal CSF spinal taps. 60% of Lyme positive antigens patients were sero-negative for Lyme disease when tested with standard western blots. A patient can have Lyme disease despite a negative blood test and negative spinal tap.
You are doing a great job researching and being your own healthcare advocate. Utilize Lymenet's 'search' function for more answers. We will help you.
Posts: 2977 | From Florida | Registered: Nov 2016
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just weighing in to support the answers you rec'd already. You experience is exactly what mine was. The rest of the tests are a waste...and how would i know? i got suckered when i had little knowledge and took all those test including the spinal tap. My results looked very similar to yours but i was with doctors who were Lyme illiterate.
Get to an LLMD who will start treatment now.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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posted
Thank you so much for your responses. This has been an on-going battle for over 15 years now, with fatigue, body aches, joint pain starting in my early 20's (I'm 37 now). It's progressed to brain fog, memory loss (at times I can't retrieve words etc and I have suffered from major anxiety.)
The thing is, I have reached out to recommended Lyme doctors, (I am based in LA)...that is why I am so confused. They keep wanting me to do more tests...one doctor wants MRI's and spinal taps and the other wants me to do IgenX - is the Western Blot at Stony Brook not enough? I don't want to spend 5k on tests...especially if I have to pay for treatment after that. Can someone point me the right direction? Thanks again...it means so much.
Posts: 7 | From Los Angeles | Registered: Apr 2019
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posted
No, you do not need to do a spinal tap nor more expensive tests. You are clearly testing positive to Lyme and you have obvious Lyme symptoms. I am a Californian and I am private messaging you!
Posts: 13116 | From San Francisco | Registered: May 2006
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Also connect with your area's Lyme support groups to get first-hand experiences on California LLMD'S treatments and successes;
posted
There is no need for all of those other tests, in my humble opinion. Maybe they are covering their backsides with all the extra testing?? or padding their wallets??
Find an LLMD who will treat you ASAP. Find a local support group. They will definitely have names of good LLMD's for you.
Google is your friend!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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