Hi Little Lamb,
I agree with you. I was diagnosed with lyme by the Igenex lab. I began treatment with a PA who worked with a "lyme literate" DO. I got so sick with treatment that I was unable to work and had to drop out of school. The PA basically kicked me out of treatment because I was "too sensitive" to it. It has been a year since I stopped treatment with them and I am still recovering from what they did to me. Last August, not knowing where to turn I started doing Chinese medicine. This helped in a lot of ways, especially with brain fog and cognition. I thought I was doing better, and went back to work part time, this spring. After 2 months of working I was having a very difficult time breathing, so I found a new pcp and infectious disease dr. The ID told me that the Igenex test results were not conclusive for lyme, that Igenex does not do a standard western blot, and has a high rate of false positives. He retested my blood at a reputable lab, and also did a pcr. I had ZERO lyme antibodies, and no lyme DNA with the PCR. He also told me that my severe reactions to the treatment were a result of toxicity, due to too much medication/the wrong medication, and not a herx reaction.
I was stunned, and I started doing research. There are a lot of false beliefs spread around by llmd's and their patients. When I looked into these things, I could not find any research evidence backing what the llmd told me, but everything the ID told me is backed in research.
1. Lyme suppresses your immune system if you have been infected for a long time, and therefore it is hard to get a positive result.
-I found no evidence for this in the literature. The only time there can be false negatives is in the 1st 30 days after exposure, before the immune system has developed antibodies, during this time a convalescant serum can be done to diagnose lyme. Pcr is another helpful tool.
2.Igenex is not a reputable lab and has been under investigation in the past.
-It would be understandable if different labs had slightly different results, but Igenex showed that I had 8 lyme antibodies, and the Mayo clinic lab showed none. A major difference which leads me to believe the ID. He was interested in correctly diagnosing me, not gauging me for money. The llmd wanted me to have a lyme diagnosis, and charged me 1000's in visits, treatments and supplements. I am more inclined to believe the dr. who was not trying to make money off of me.
3.A herxheimer reaction is NOT an exacerbation of symptoms. It is a hot, flushing sensation, lasting at the most 4 hours.
-this is the most damaging lie which lyme patients are being told.
-look up herxheimer reactions, not on a chronic lyme website but actually in the literature, and you will find that my definition is correct.
-llmd's tend to use a lot of medications. I would be given around 5 at a time, with Antibiotics plus herbs
-when people react strongly to medicine that they don't need, they are told to stick with treatment, that this means the medicine is working
-this is just plain false and dangerous, I continued to take medicine which was causing toxicity in my body, and probably caused lasting damage as I am not fully recovered.
-The herx reaction only applies to lyme spirochetes, due to the endotoxins released at die off
-lyme co-infections do not cause a herx, as they do not release endotoxins with die off
-please look up what a herx reaction truly is and see for yourself
I am not saying that no one has lyme, and that any of us aren't sick. I am sick, and unfortunately, was made sicker by misdiagnosis and wrongful treatment. There is hope out there, though. I have a good pcp who is committed to finding a cause for my illness. I had been mistrustful of the medical establishment due to things in my past, and I think a lot of us experience this because of the problems with the US healthcare system. I believe that there are llmd's who take advantage of people who are very sick, and just need answers. You are not paranoid Little Lamb, I think your intuition is cueing you in to something and you should continue to seek answers.