Update and NEW Doctor, please read if you have Lyme and are not getting better

Hi Cocoon,

I've been where you are and I have never forgotten those feelings. It really stinks but I believe you will come out of this.. You can e-mail too if you feel the need to talk in private. I went through some bad times before I became well and there were times when I really wanted out....

Hang in there okay?
Denise

Thank you.

We all need eachother, only a person that's has or had Lyme can truly understand what we are going throug.

justne

Yes, we all must stick together and I wish more people who have been healed would post..  How could a person forget the pain and agony they went through?  I can't and in some ways I don't want to.  When one reaches the light at the end of that dark and gloomy tunnel I believe they come out a better person for it, at least I hope I have...

Wryter, you are so sweet and I'm happy I was able to help you a bit... 

Jusme, I am also keeping you deep in my heart....  Hang in there all, it does get better! 

Denise

Justme,

Thank you for posting this.

I have a detoxing problem as well, no cause found yet. Been PCR tested for HHV6, 7 and 8, EBV, Cytamegalovirus. All tested negative (although I had EBV before, it doesn't show on regular tests, nor on PCR test). The only virus I tested positive on is XMRV. I have been treated for that for 2 years, prior to Lyme/Bart treatment.

Mold is not really an issue in Belgium as it is in the US... so drs here don't consider it as a problem. Do you have any idea of what your dr will prescribe for that, except for the cholestyramine? I can't find Cholestyramine online, is it on prescription in the US?

Thank you & good luck with the new approach!

Marie

Marie, here's the mold protocol that seems to be usually prescribed:

Low sugar diet.

2 weeks of diflucan (oral)

3 nasal sprays....

Amphotericin for fungi.... actually it is Nystatin for the nose.

2 antibacterials.

Nystatin for intestines.

Here's the link to the thread I copied it from in case you want to read it:

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/10971767-i-need-helpmold-and-fungals/limitstart/10

YES, If you have been exposed to mold please try to get the cholestermine, try to get it even if you have not been exposed, and do not detox well.

I had been trying to get my hands on this medication for months, after talking to a girl from Canada that had Lyme and a rare co infection fl 853 i think it was called, anyway she got better on this stuff.

The rare virus caused seizures just like mine, so i am hoping it can help.

I know mold can be a big issue as can heavy metals and co infections. For me I am not well enough right now to go after the Lyme, we are going after the mold first, I can't handle antibiotics right now, and we are waiting for the tests to come back, even though my doctor said they are only about 70 percent accurate, I figure if they catch it, that's a great thing.

In as bad shape as I am , a few weeks ago I was worse, so I can see some improvement, and I am fighting, we can't give up, many people are getting better, we just have to find what works for us.

justme

I will try and convince my GP to prescribe my the Cholestyramine, I hope he goes with it...

If not, I will drive to my sister's GP who is 1 hour away - he's a descent listening dr who really believes in Lyme and Bartonella.

ToddPaul,

Thank you for the protocol. I still have tons of difflucan at home... I just ended 2 months of sporanox, and had been on difflucan for long periods before. But I guess it comes back when not dealt with descently...

I need to try this - just to be sure...

And Justme, good luck with everything,

MarieLS

ok, thank you for the reminder Trav

I am having a rough day, woke up pretty sick couldn't get out of bed , then decided I was going to take a hot bath, had a seizure in the tub and slipped.

I was having a really bad herx, but alka seltzer gold helped me stop throwing up, and I decided to post in case other people are having a difficult time.

The only bright side of my day, is Dr. Horowitz new book arrived , why can't I get better, and so far it's a really good read.

I just need a little break, a break for seizures and pain. I am tired of being tired I guess.

I really hope everyone has a great day tomorrow, me included,

justme