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11/01/2008 22:27
beauty4ashes
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If I'm chronic Late Stage at this point, would the titer likelt come back positive after this length of time, or is still a waste of blood??

My PCP will only do the titer & won't see me... most of you already know this, and that I am going to be seeing an LLMD (ND) who will run all the tests I need through Igenex.

I am just wondering what the odds might be of the titer showing positive if it is Lyme and it has gone untreated as it has for the last 3+ years now. Since they do not believe Lyme is even in our state, and won't see me if I even mention Lyme..... if there were a strong chance of it coming back positive then I'd go ahead and go do it, even though I'm going to go see the LLMD on my own anyway. If it's still too much chance that it would come back with a false negative though then I do not want to bother and then just give them that much more ammunition in their line of thinking that I have brain damage for even bringing Lyme up.

What do you guys think?? Is the titer just a waste of time & blood??

Thanks~

I'm F.I.N.E.
Frustrated, Irritated, Nonfunctional & Everything hurts!!

Sarcasm: Embrace it!
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"Always hold your head up, but be careful to keep your nose at a friendly level" - Max L. Foreman
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I know God will not give me anything I can't handle.
I just wish he didn't trust me so much.
- Mother Teresa
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11/02/2008 04:58
dharma79
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I just recently tested positive after having NOT for 13years...granted this was the first time I've been tested again in probably 5-7 years...I asked my doc...and he said he's not really sure why...he proposed possible reinfection because the bands that came back positive were indicative of early attack.

I wouldn't do anything related to Lyme through your PCP, in fact, if possible, I'd find I new one for regular health care...let the LLMD get you squared away...and build your case for Lyme. You already know that your PCP has no interest in helping you.

You are in my thoughts...I hope you start feeling better soon!

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11/02/2008 05:12
denise17
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I was infected 20 years ago and my IgM WB through Igenex came back very positive, several lyme specific bands,and the IgG came back with only the 41 band positive. What I did was get a deep tissue massage the day before the test to get the little buggers out of hidding. It apparently worked. However I also had all the coinfections tested for and they all came back negative. I have since gone to my current Dr. who said through other testing that I did have several of the coinfections, was treated and now they are gone.

The spriochetes cycle or go through a growth phase every 28 days and most feel a worsening of sypmtoms. If you are aware of this I would get your blood tested then and of course at the beginning of the week to ensure a fresh sample. Or you can try the deep tissue massage before the test.

If your PCP will only do the ELISA then yes it is probably a waste of time. I would wait and get the Igenex tests through your LLMD with the suggestions I gave you then show them to your ignorant PCP. Every day I am amazed at the stories I hear of lyme sufferers experiences with ignorant Dr.s Listen to this one. I just met a fellow lymie and he said he tried to call an ID Dr. to find out about seeing him for lyme and they said " We don't treat lyme it's not an infectious disease" Unbelievable!

Good luck and take care,

Denise

Denise
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11/02/2008 12:54
beauty4ashes
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Thanks, girls!

I do think I will just work with the LLMD on this, and then if I can obtain proof of the LD, then I'll make sure my current PCP hears about it, for sure. I want to write something up using Julie's husband's letter as a solid reference,... that was a GREAT letter.

I am going to be looking at changing my PCP now, too,... I feel too much animosity for them now. Unfortunately, I may be faced with the new one thinking I'm nuts, too, though because my ins. IS their own doctors and hospitals, and your health records are in a computer network so that whenever you see another MD in the network, they can have your history at their fingertips..... which is great,... until one of them makes note that they think you're nuts for thinking you may have Lyme. So, I'm prepared for that... hopefully, they won't have made any notes, but I know they did authorize the titer so it's probably obvious in my chart now. Whatever........

We're going to be looking at other ins companies now anyway for our business. We renew in January so this is the perfect time to start looking at other options.

I looked up in the current ins. directory last night though and found an ID I am curious to call and just ask them what their stand is on Lyme........ just to see what they say. I suspect it will be about the same as the others,.. which will just reaffirm us wanting to get away from this 'group'.

The LLMD I'm starting with is going to run the western blot and all the others for Lyme and co-infections, also the CD57, and all through Igenex so I'll be in good hands for the testing... it's just with my ins turning their back on me, it's now going to cost me between $300-$500 just for the labs, depending on how many he thinks we need to do. He said he'll want to do the confirmation test, too, if I come back equivical.

I will keep you posted! (((hugs)))

I'm F.I.N.E.
Frustrated, Irritated, Nonfunctional & Everything hurts!!

Sarcasm: Embrace it!
______________________

"Always hold your head up, but be careful to keep your nose at a friendly level" - Max L. Foreman
______________________

I know God will not give me anything I can't handle.
I just wish he didn't trust me so much.
- Mother Teresa
______________________

"There's always light at the end of every tunnel, just pray it's not a train! "
______________________

Faith makes things possible, not easy!
Reply  



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