Clinical diagnosis, is it really Lyme?

Right now, all I have is a clinical diagnosis. I have probably had 50+ vials of blood drawn eliminating everything else it *could* be. I have been tested for everything under the sun, INCLUDING Lyme. The reason my Dr. felt it was Lyme is because of the high incident of false negative coupled with the fact I tested negative for things that DON'T get false negatives.

I have also herx'd on antibiotics and herbal protocols for Lyme. That coupled with the fact that I have 33 out of the 38 major symptoms for Bb and 18 out of 20 major symptoms for Bart... :)

I can't say why the people you are talking to aren't getting better. I know there are people who have confirmed CDC positive results that are not getting better also. It happens, unfortunately. It depends on many things...how long you went undiagnosed, how long you have been ill, other meds/lifestyle choices that may have complicated your illness...how many co-infections you are dealing with...some people cannot tolerate the aggressive treatment and have to do less harsh protocols which may make it *seem* like they aren't getting better as fast. There are so many variables with this.

I would HOPE that if they have a clinical dx. of Lyme it is BECAUSE they ruled out everything else. Yes, it took me longer to get treated, but I am grateful that everything else was checked first. I can't think a Dr. would in good conscious label someone with Lyme without doing their homework, so to speak.

Just my .o2...:)

As Springsjean pointed out, there is an incredible amount of lab techs that haven't got a clue as to how to really read a WB or Elisa test. Another reason that there are a lot of false negatives is simply because in order to test positive, your body must be making antibodies to fight the tick-borne infections. If your body is not making antibodies to fight this infection, then a person will not test positive.

One reason a person's body wouldn't make antibodies is because the infection has gone chronic. Some LLMD's believe that a person's infection can become chronic in only 2 weeks from the time of the infected tick bite. Lyme can also avoid detection because it has three different forms it can appear as - spirochete, cell wall deficient & cyst - and (I think -which usually gets me into trouble!) that the only form that we can kill them off is when it is in the spirochete form.

Many people who have LD & co-infections have been in treatment for years because there is not just a straight forward, one-size-fits-most type of treatment. I believe that each & everyone of us will need a very individualized treatment as Lyme & co's attack the body's weakest points - gall bladder, heart, liver, or whereever & just goes from there to continue to reek havoc.

Personally, I have no clue as to why people will stay on abx for years & years even though they see no progress, although I understand that there are quite a few abx combo's out there to be tried & it takes a while to get through all of them. I tried abx for 1 year & got soooo ill. The infection went into my brain & I couldn't function. It has taken me three more years to finally find a competent alternative medicine doc that was willing to take on a chronic LD patient. I have found an Acupuncture Doctor who is also a Master Herbologist (for both Chinese & Western herbs), and she has made more improvement than anyone else has been able to! She has told me that it will be slow going for quite a while as there are so many things she is trying to straighten out with my body.