Read the old posts from LizaJane about Lyme disease testing, about how to get a proper test and how bad the standard tests are for detecting Lyme. And the importance of having a Lyme literate MD. She is the one who convinced me to get a proper test. Otherwise I would have gone to the Infectious Disease doctor that my GP tried to send me to and I would have fallen through the cracks. Infectious Disease doctors are clueless about Lyme as is most of the medical community.

Have you noticed a huge improvement after the lyme treatment?

I think it was 41 and 66 but only igg (not igm)

I would recommend the test from Igenex. It is more sensitive. They are a tick specialty lab.

I haven't noticed a huge improvement yet but I believe I have been sick for more than 40 years. It takes a long time to treat chronic Lyme. I haven't been on treatment long enough yet plus you have to take different antibiotics to kill all the different forms of Lyme. I have only taken a couple so far. I have noticed some improvement, yes. It is better than no treatment at all. There has been some improvement in the neuropathy and my jaw feels better. Plus I have yet to treat the co-infections that usually come along with Lyme.

If you do have Lyme, the doxycycline causes some of the Lyme spirochetes to change form into cyst form. They do that to evade antibiotics. When you stop antibiotics, they change back into spirochetes and re-infect you. You have to take a cyst buster like Flagyl or tindamax or grapefruit seed extract in addition to the doxy.

I would be worth getting the Igenex test just to rule out Lyme so you don't have to worry about it.

Hi Healthgirl
Im a bit confused. You say your going to a functional md who is treating you for mycotoxins with cholestyramine. What is that and how did you find out that you have this? And what is Giardia? Do your Doctor(s) think these "infections or viruses" are causing your neuropathy?
Thought I would chime in on the Lymes...I still can not get some kind of accurate Dx for my sfn..My Rheumatologist did bldwork, she said 3 bands came back showing lymes (I think thats how she means it). She said 3 "infected" bands are not considered lymes , I would have to have 5 bands for the CDC to consider treatment for lymes. I also have one sightly low Subclass 3 IGg. She wants to retest me in 3-6 mos. Does any of this make any sense to you?
I'm sorry your feeling overwhelmed, I know that feeling all to well.

I'm sorry but that is incorrect. Read the book "Cure Unknown" by Pam Weintraub and "Why Can't I Get Better" by Richard Horowitz. Also go to lymenet.org. They can explain it a lot better than I can. What 3 bands were reactive?

Also, my peripheral neuropathy is quite severe. One of the numbers on my skin bunch biopsy was 0.9. It is going to take a long time to grow back those nerves, if at all. I am not sure if the damage was permanent but at least I can keep it from getting worse.

I am very confusing and confused too.
As I still have not found the cause for my neuropathy, I haven't given up and every once in a while, I make an appointment to see a new specialist with my test results and what ever research I can present. I originally went to a lyme dr who wanted to aggressively treat me for bartonella but I was very scared to take so many drugs. Then my kids and I started having an identical vascular rash and it became clear that they also were affected by whatever got to me. Thank God there symptoms are more mild than mine, but they are disturbing and no doctor knows what to do.
I became less convinced of the lyme and thought more along the lines of toxic exposure. Either way-something got to us and I can't give up.
I went to a functional md (knowing) that they usually diagnose mycotoxin or lyme. I did happen to find mold in my old house and being that we are all affected, it made sense to go with the treatment especially because it is very safe and short term. (Cholsestyramine for about a month to "bind to mycotoxins". That's the theory anyway. I am 3 weeks in and have no improvement. In the mean time, I went to a gastrointestinal md and showed him 2 old case reports of people who developed PN from giardia. He thought it would be very worth while to take Flagyl for 10 days to see if it would cure me. I am terrified of this drug however due to the fact that it actually induces PN with in the first few days of taking it for some people.
So that's where I am.

Studies have shown that you can actually pass Lyme & co's on to your children in the womb. Whole families often have Lyme. I know the feeling about being leery of taking so many medications. I am not thrilled about it either. However, I do not want to continue to get sicker.

Dear Heathgirl,

I think you know the score.... Marlene said it first and best....you all can be tested for giardia, and should be, before the prescription of a potentially neurotoxic antibiotic.

There are a wealth of articles on Flagyl causing irreversable PN, including from relatively short-term low doses, in children as well as adults.

I'm doctor-shopping now, sick as I am, because I'm trying to assemble a smart team who understands my disorder. Part of this is the continual search for a possible underlying disorder.....so I think your desire for treatment and your hesitancy about this doc is very justified. The last thing we need is iatrogenic exacerbation of our symptoms.

Best of luck....especially if you must gather multiple stool samples for the three of you!

Sylvie