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.

AS neuropathy, joint pains/issues is a symptom of lyme and other disease, its easier to point to lyme, because it is more treatable than an autoimmune(which requires lifetime vigilance on symptoms)
I requested the list, because i was considering, but now im not certain(though i have a small feeling it is lyme), furthermore, my situation made me "mentally" vulnerablly to chronic lyme people, who tries to convince me to take this tests regardless, Everytime i come across a new medicine,test, medical problem i was research it, i also was type "what if, and if this is reliable", thats how i found out that the whole controversy around lyme, is very questionable. No i did not get tested from igenex, i currently and on welfare(because i dont work, im a struggling student, shouldnt been an excuse though"), since on welfare, doctors technically work for a public hospital, and that is work for city government, and is most likely in contact with cdc. I GET THE feeling they are aware "chronic lyme beleivers out there", and they do call it disseminated lyme, instead of chronic.

I was already suspicious when people mentioned that i may have lyme, because alot of things dont fit, since Llmd, do no take insurance, neither that the tests they constantly profess as the gold standard of lyme testing.
I am also aware they will try to get you to get tested for coinfections associated with lyme(which is even more expensive than the lyme test through igenex).
LLMD can charge an absurd amount of money, as revealed by the OP, up to 1200/per visit, or some llmd can try to milk you, by x amount$/time can very high if you dont have that much income. Theres is a reason why there is insurance, so you dont get the bill for full cost of a medical procedure.

AS in my previous posted, i also noticed that people dont even get better even while under the care of thier llmd, some people got even sicker,(infections, convulsions, gastrintesnial problems) this is due to the antibiotics, and herbal supplements they are taking. But heres the catch, chronic lyme believers, say that if you are not "feelling any symptoms", it means you are still sick, once you feel symptoms, thats mean lyme is getting killed. I find this logic very twisted.

Clinical diagnosis is based off on textbook case symptoms, if fall under a certain amount symptoms, int his case lyme" bulleyes, joint pain, neurological disoder, this is excluding any blood test, imaging. lyme can be clinically diagnosied, if there was a bullseye, or if you fell ill after been in a tick area, or bitten by a tick.
Actually LLmd, ND are doctors, hence the MD in thier names. but these doctors chose a questionable path in thier career.
@healthgirl, low ferritan ca be a sign of iron -anemia deficiency, copper deficiency that needs to be addressed. Does the llmd want you to go back toto him? the llmd was considerate in thinking you may have problems unrelated to lyme

If you have a small feeling it is Lyme, why not bite the bullet? I know it's very expensive. I found a doc in NJ that will see me for $350 combined with the test would be a total of $550. While it annoys me that I have to pay this much out of pocket, I also don't want a possible infection to linger as it seems Lyme is very difficult to treat in the later stages. Just want to test and be done with it.