dapsone is specifically used for dermatitis herpitiformis(autoimmune skin manifestation of celiacs or gluten sensitivity), it is a immune modifier, not a suppressor. some antibiotics are better anti-inflammatory than at being antibiotic. long term antibiotic use in general can lead to fungal infections, or other bacterial infections, c.perfringes.

I am also considering seeing a lyme specialist. My initial bloodwork showed "Equivocal" for IGM. The only positive I got was 41 IGG on western blot. My primary doc told me I don't have lyme. But now i'm reading people do further testing after being negative and they eventually show positive. This is really frustrating! Has anyone done Igenex test?

IF google and read the previous posts, you can go see a llmd and get tested, but do so at your own risk. LLmd will not take insurance, and any lab that is not officially sanctioned will not be covered by insurance, such as igenex, and some private labs. and its very expensive to see and get tested. The only doctors or physicians that will approve these test are llmd, or doctors that believe in "chronic lyme disease". Llmd will most likely based it off your symptoms alone(excluding other possibilities). The tests IGENEX uses, are very questionable, as thier alternative methods of detection, are not validated, or reliable. just hope you dont get treated for the wrong things. HAVE YOUr doctor suggested doxycycline, for a few weeks to see anything.

Yes that is what i'm worried about. A false positive and unnecessarily flooding my body with antibiotics. I'm willing to try anything at this point. My biggest fear is allowing something to progress to the point it is untreatable.

I might take the Igenex test since I've had lots of exposure to deer ticks and tick bites. I'm trying to dig into all the different lyme testing methods right now and see what make the most scientific sense to me.

The Igenex test is validated (lab tests in all walks of life are validated given what they are used for and what regulatory bodies govern them - GMP, GLP, ISO, CLIA, etc). The contentions part of this lab test seems to be how your test results are interpreted.

I actually emailed igenex, and they sent me thier test list, and cost, for different panels, they were very expensive, hundreds to more than a thousand.
tHE REASON why a non-llmd pcp/specialist, because the tests is not widely accepted, and igenex is a private lab, and thier motivation is to make pure profit, and the tests itself are not recognized by them. Most experimentation of science are done in peer-review journals, like new england of medicine journal, or something like nature or science magazines, these are technical data on experiments that have been done and verified. igenex or chronic lyme disease tests dont have this, there are sites out there claiming they can see lyme in multiple forums, but those are anecdotl, they dont show any evidence.

I had to ask the question: "why is igenex the only one, testing lyme and coinfections, and why a significant portion of thier tests are always positives?
-just another note, chronic lyme believers dont even believe in the accuracy of the test, they use, and instead believe that they have lyme, because thier llmd said so.

Yeah, I'm not one of those "my doctor said so" people. I know what you mean though.
I am being very laid back while I consider treatment and waiting for the labs he ordered through quest to come back. I went Monday, and had everything forwarded to my primary (even though he is almost useless... knows nothing about small fiber neuropathy. I actually think he is frightened of it. It was his PA actually who discovered my crazy high ANA- so I'll probably stick with her as my primary)

The lyme doctor gave me a packet of his info and research to give to my primary doctor and is willing to work hand in hand with him. This guy is a real doctor and knew things that most average primary doctors do not. He went over my blood work and asked me if I was checked for this, that, and the other thing (not having to do with lyme....) He is the first doctor who recommended a hematologist to find out why my ferrritin and copper are so low. He recommends a mammogram soon because I turned 40.
I do think he is a mad scientist who obsesses on tick borne illness, but that might not be a bad thing- since it is a possibility.

There are actually studies that show that Lyme bacteria can change into a round form, and possibly invade cells of its host to evade antibiotics. Some of these tests have been done in cultured human cells of various types only, so it is yet unclear as to whether or not the same holds true for human hosts, but it does raise questions...so whether or not the spirochete involved in Lyme infection changes forms still is a possibility.

Plaquenil has been shown to have an effect on killing this round/cystic form of the bacteria.

Well it sounds like you are in good hands! It's hard to find someone who thinks outside the box.

Did you get tested through Igenex?

I am in the middle of trying to set up appointments with some LLMD's. The basic Lyme test is around $200. I just want reassurance that I am negative for Lyme. Not sure how I will proceed if it comes back positive though. Last thing I want to do is take tons of abx and make myself sicker.

It just surprises me that lots of people still get clinically diagnosed even with negative results. Some get better, and some don't. The only reason I am doing this is because when I had onset of my pn, i had night sweats and swollen glands which usually signifiy some type of infection. Also, my test results through labcorp showed equivocal result, and positive 41 IGG. I basically just want to test again to reaffirm I am negative so I can check it off my list.