Hi Lamb,

Wow! Are these things that *you* think about on a regular basis? Do you have Lyme? Sometimes Lyme can give you strange psychiatric symptoms like psychosis, delusions, and paranoia such as the feelings you describe of thinking everyone is lying and out to gouge you. So if you have Lyme it may be that you are thinking these things and feeling this way as a symptom of Lyme.

To answer your question, no, I have never felt like Lyme is a scam. I researched all the labs and tests I took quite extensively, and understand that they are valid and legitimate. The labs I used have had their results duplicated independantly in other labs and have passed inspections with flying colors. However, there are *many* labs that run lyme tests that are completely inaccurate, but they do not give falsr positives, but rather false *negatives*.

As for Lyme doctors being in it for the money, I don't think so. Lyme literate docs are persecuted constantly for treating Lyme. Some Lyme doctors have lost their licenses, others have to attend disciplinary hearings. That, combined with the fact that most insurance companies refuse to pay for treatment make being a Lyme doctor extremely difficult. Many lyme doctors also will treat patients for free, since many have no money from being sick so long.

Medical doctors may say there's nothing wrong with you, but when you are sick with Lyme, you can feel it and can feel that there is quite definitely something wrong. I would never believe a doctor that says I'm fine when I feel differently so that's not a problem.

Also, there is no "miracle cure" for Lyme. Many people remain sick with Lyme for years and years. I have been to no doctor that claims there is a miracle cure.

Lyme has been found in many bodily fluids, making it quite clear that it can be passed in utero and through sex, so whole families having it isn't that pecuiliar.

Wow, and all the other questions...none of those have ever crossed my mind. I don't know of *anyone* that thinks of Lyme as a higher power (!?). So I guess it's hard to ignore something I never think about. :)

Welcome to the Lyme forum. I see you haven't posted here before.

Alison

Sure, Lyme "literate" MDs are on the take, some of them, but some have indeed wrought cures. One thing you can be certain of is that the other 899,000 are indeed crooks. Typically, they go to any lengths to avoid diagnosing clear signs of an infection and the lab tests have been deliberately tampered with by the CDC to screen out 90% showing neurological symptoms. Those are usually diagnosed with some form of mental illness because crazy patients need not be heard and because the commissions on psychoactives are recurring and fat. If that doesn't work it's MS, fibromyalgia, Alzheimer's or many other bogus diagnoses that can'be effectively treated. I know all this very well because I came down with a severe bacterial infection 47 years ago that could have been treated if I hadn't been constantly put off and sidetracked by these medical crooks. As it was, I ended up wasting 8 years university education, losing my career and home, forcing a disabled wife and three children to suffer in poverty and loss of social prestige. It turned out the wife was disabled because she also had Lyme... or, indeed, perhaps it isn't Lyme. In the end we only know for 100% certain that it's a bacterial infection with enough overlapping symptoms to peg it as being the same. She also lost her career and suffered a complete physical and mental breakdown, all of it preventable if the medical industry and gov weren't farming us like barnyard hogs. Oh, yes, indeed, the CDC, Mayo Clinic, Yale U, and Smith-Kline were caught red handed making a bogus vaccine that crippled thousands before it was discretely pulled. Oh, but that's not the rest of the story. Of course, the children were congenital "Lyme" and their lives completely destroyed. They can never have decent jobs or families of their own. Or maybe it isn't really Lyme. Does it matter? We only know that it is a bacteria that MDs have been trained to avoid diagnosing by all means of willful negligence and that in the end it could have been treated inexpensively, indeed, everybody is definitely lying to you, that's for sure. If this is the verifiable truth, shouldn't everybody know it and either be forewarned or given new hope? In 2013 the CDC, a profit corporation NOT government, raised its estimate of new Lyme cases from 30,000 a year to 300,000. Suddenly, ten times more ticks? No, there were always at least 300,000 and most became chronic lyme disease, a horrifically painful crippler, but few ever knew/ And how many congenital infected? Use your head, MILLIONS. How many of those are autistic? How many of those are additionally vulnerable to vaccination damage? How many parents have seen it? Millions...

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.