posted
My Bart tests, through Igenex, came back negative. But I have ALL of the symptoms of Bart...isn't that what is responsible for the psych symptoms?
I decided I need to retest for Bart..going through Fry labs. The Dr.s here will not treat anything without written diagnosis, because they just don't know much about Lyme disease here in Utah.
Any comments would be appreciated!
Posts: 33 | From Utah | Registered: Mar 2008
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posted
Also, forgot to add...if I am currently on so many abx., how long should I wait to retest for the Bart? Are the abx going to affect the results?
Posts: 33 | From Utah | Registered: Mar 2008
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posted
In my case it didn't matter that I was on abx while testing for bart. Both times I was on abx and both times tested positive. Psych symptoms are also caused by Lyme, since there are studies of patients leaving the madhouse after Rocephin - before bart was even considered a co-factor.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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daise
Unregistered
posted
Hi lorenzfam,
Seems like just recently you posted for an LLMD. Maybe I'm mistaken ... but do you mind if I ask how long you've been taking antibiotics?
The tests can't possibly detect all the bart strains.
The thought is to keep treating for bart until it seems you don't have it anymore (and considering where you're at with Lyme treatment.)
Both are a clinical diagnosis and treated according to your signs and symptoms.
Tests don't hold much weight.
Also, I'm wondering what "written diagnosis" means, please?
Are you being treated by a conventional PCP, on recommendation from an out of state LLMD?
Heavy psych symptoms can be caused by Lyme; anxiety can come from bart: yes, psych symptoms can come from both. Then there's Lyme stress ...
posted
According to Fry Lab, you do have to be off of abx for 2 weeks, in order for the blood smear test to be accurate. It's my understanding that for the others, it doesn't matter.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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posted
I did see a LLMD in California, but he didn't seem to know as much as he claims he did. He didn't ask me any of my symptoms...went on test results alone. Didn't want to prescribe IV, either.
I have chronic Lyme for crying out loud! I have done enought research the last month to know that something wasn't right. I cried after the visit because I was so frustrated with him!
My mom is going to her PCP here in Utah, and he is willing to learn about Lyme. I went with her to her appointment today, and he said he would treat me as well.
He also said he would give me the IV...thank goodness!
When I said written diagnosis, I meant test results..sorry my words seem to slip away from me!
The Dr.s here just don't know enough about how to diagnose based on symptoms, so it helps them to have the test results as proof (even though they are not much help). Hope that makes sense.
Another note: Brother and Sister are getting tested as well (I already know they have Lyme, though). We were all in the tick-infested area at the same time and they have so many medical problems it's unreal!
Posts: 33 | From Utah | Registered: Mar 2008
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Lorenzfamily,
Be sure to get the Fry smear AND titers. My experience is that one can be positive with the other negative. For Bart, this was positive smear and negative titer.
Sorry to hear about your LLMD experience in California. I have one near my home that decided what to do (IV Rocephin) within about 10 minutes, but didn't talk to me about any of the possible side effects. By more research, I decided that this was not the right way to go for me.
I then went to one 6 hours by car from my home, and my first appointment was 4 hours long, all but the last 30 minutes was about my symptoms!! I'm currently doing a treatment plan with him.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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daise
Unregistered
posted
Hi lorenzfam,
The "LLMD" you saw was not an LLMD. Please know that any doctor can call his or herself an LLMD. These are the phony LLMD's.
They lie by saying or inferring that they are Lyme-literate. They only want your money.
Yes, you need to see an LLMD, however, that needs to be also an ILADS doctor. They will always ask about your signs and symptoms!
Lyme and the coinfections remains a clinical diagnosis.
Many people travel hundreds or a thousand miles to see their doc. Years ago, some of those in the middle of the country traveled 1500 - 2000 miles, regularly.
I'm sorry, but financial problems are the norm for most with Lyme.
How long have your family members had signs and symptoms?
It's wonderful that you have a Utah PCP who is willing to learn and to treat. PErhaps that will work out with a consulting LLMD.
However, I wonder if the PCP realizes the duration of antibiotic treatment that chronic Lyme requires.
I want you to know this: that would be unusual, indeed. Not impossible, but unusual. Lyme is not at all acceptable to the overwhelming majority of conventional doctors.
It isn't that they don't know about it ... it is that they DO know about it and abuse and neglect us.
I'm saying this to inform you. OK?
I got the bulls-eye near Layton, UT, which is near Hill AFB.
I hear you about conventional doctors requiring positive blood tests, in order to treat.
Most with coinfections, like bart, do not test positive. That's the state of the tests available.
Stay with us, OK?
daise
Most strains--they CAN'T test for, yet.
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