LymeNet Flash: Waiting and hoping....

This is topic Waiting and hoping.... in forum Medical Questions at LymeNet Flash.

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Posted by threefries (Member # 6959) on :

It's sad to say that I'm hoping I test positive for lyme. But if I don't, I may still have it - and I still won't have any idea what's causing all these symptoms.

Please oh please, I hope that second ELISA comes back positive.

I don't particularly want the MRI to show anything, but I won't know for a week anyway - my doc. is away.

Please keep me in your prayers.

Thanks

Posted by ConnieMc (Member # 191) on :

Why are you having that test? It is not reliable. What you need is a Western Blot from Igenex. And also comprehensive testing for coinfections.

If the test is neg, don't give up. And don't think you have Lyme. IMO, that test should be scrapped. It is useless.

Posted by treepatrol (Member # 4117) on :

Test needed Western Blot, and Three day urine bumped while on high abx dose during 3day urine test.
PCR? ELISA not very good.

Labs
MDL
Igenex Labs
Q-RIBb
Western Blot Info
FDA It is important that clinicians understand the limitations of these tests

[This message has been edited by treepatrol (edited 09 March 2005).]

Posted by James H (Member # 6380) on :

It would be good to use this time to get in contact with the offices of the LLMD's people have emailed you about. Regardless what comes back on your tests you will probably need their help either for better testing or treatment.

It would be good to make contact, ask office staff questions about insurance issues, and get any questionaires they want to send you on the way.

If it turns out you do not need the LLMD for some reason you can always cancel.

If the Elisa does not show enough to get you some antibiotice (a likely outcome) and it looks like it is going to be a while... If it were me just personally... I would be trying hard to get myself some antibiotic of some kind to keep a lid on it by whatever means was available.

If there is even a hint of complexion problems one could ask the GP for some minocycline to clear that up. If one has a history of Strep infections penicillin can be prescribed as a prophylaxis for strep. If a GP is understanding of your problem he can sometimes give you some interim help by backdoor means.

Some in more desperate situations have just purchased antibiotics online, or even taken veterinary medicines. (He seems to be doing OK, but he DOES now have a longing to eat the greener grass on the other side of the fence!)

I'm not suggesting that route, it just for emphasis... But if you have this you DO want to pursue getting treatment with great effort... like your life depends on it.

Actually... come to think of it... If *I personally* had NO option left I would be in the barn lined up with the cows for my penicillin shot before I would just let these spirochettes multiply in my brain tissue unchallenged.

Don't head to the barn with the top of your hip exposed just yet... but PLEASE do follow up on the LLMD leads we gave you. I think making some contact with them early and asking questions will come in very handy later. It takes quite awhile to get an appointment sometimes.

It is going to take alot of effort, we will help as much as we can.

(And please understand my comments about taking cow medicine are just for humor... don't take me seriously!)