posted 23 May 2004 14:16               

Don't worry about not getting everthing said in one post----- this disease is so complicated that it'd be impossible.

It DOES sound as if you're getting pretty good care. Too bad your insurance is copping out.

About your PCRs (and correct me if MY Lyme brain doesn't get it) ----- the only positive PCR is urine?

Or the urine AND a tissue biopsy? (Where was that tissue taken from?)

Spinal was negative?

What's aggressive or what's short? Beats me! It certainly isn't the same for each person.

And now I understand why a *fairly* short IV course---- having an infection in the PICC. Not good.

Also sorry if getting all the info has been like pulling teeth,

LOL----- what else would we be doing if not having MY Lyme brain talking to your Lyme brain. Don't worry about it.

MDL is the other good Lyme speciality lab--- so their tests are pretty trustworthy.

You wrote:
I know there's something somewhere that's going to help... just haven't found it.

That's wht I'm still fighting for treatment no. 7

That's great! Most of us here have lots of experience in fighting for ourselves. Against great odds, but it pays off.

BTW--- I posted a new topic, so people who weren't paying attention to this older thread might come over and give you more opinions/answers etc. (Week-ends are sometimes pretty slow.)

You mentioned you're almost a recluse. Does that mean you're unable to work?

I hope you have supportive friends or family to help you. And you'll make e-friends here, of course.

I'm getting there---- with understanding your case. I'm pretty slow at times and Omnicef and Zith are doing a herx dance with me.

More info?

cave76

posted 23 May 2004 19:03            

Glass, it sounds like you started receiving treatment early in the understanding of how to treat Lyme. Shorter courses were believed to be sufficient.

As you and your doctor are finding, there are many for whom even a two month or six month stint of IV is not sufficient to totally eradicate Bb.

The problem with breaks in treatment is that it may give the bacteria time to regroup, mutate, and otherwise become more resistant.

Steroids are also known to suppress the immune system, so that may have been to your detriment as well.

"The bacteria that causes Gulf War Syndrome" is most likely a mycoplasma infection. Mycoplasma are cell wall deficient bacteria that, like Lyme, are very difficult to eradicate. It usually take months of appropriate antibiotics.

Is your insurance company refusing all treatment, or only IV? Many people are finding that orals taken for a very long time, sometimes as long as five years, can be quite effective.

Check the International Lyme and Associated Disease SocietyTreatment Guidelines Summary.

Is your doctor a member of ILADS? If not, perhaps they would want to consult with an ILADS doctor. It seems you have plenty of evidence for the need for antibiotic treatment for several bacterial infections.

The evidence in the ILADS guidelines may help you in fighting your insurance company, but perhaps the insurance is not the only issue in whether or not you are getting treatment.

Maybe you could start another post with your own headline, so more people would be likely to read it. Put your most important concern or question as the title.

posted 26 March 2005 15:16            

I hope MARNIE sees this. Could you edit your LONG web link into 2 lines so the text fits on one screen so we don't have to use the left/right arrows?

Marnie, I want to print this off after you edit. It's wonderful, detailed info! My pc printer would cut things off left & right this way. Thanks so much for helping me educate myself better!

posted 15 May 2005 14:55               

So, when you suspect lyme, because arthritis is the #1 symptom, docs order that to see if you could have infected joints. (inflammation)

Well, then if it wasn't a Lyme specialty lab--- it's all moot anyway.

What's interesting to me that so many of *us* have a normal SED rate (measures for infection)---- when we have a raging infection---- i.e. Lyme!

cave76[/B][/QUOTE]

posted 15 May 2005 23:33               

quote:

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Originally posted by PINKISH.HUE:

Well, then if it wasn't a Lyme specialty lab--- it's all moot anyway.

---

you got it!