igenex testing - questions

i am finally having the igenex testing. i however, can only afford the basic lyme panel. i am wondering if anyone knows about how accurate this is?
i am worried that i am neglecting to test for the other tick borne diseases, but they are just too expensive right now.
i have been sick for about two years now, i am 25 years old, and i went from in above average health (division I ncaa college athlete) to really debilitated over the course of about a year. i had been living in west africa, and felt great the whole time i was there. i do remember, however, being bit by a tick and it was embedded for about four days. it was shortly after that i got sick with a high fever, fluish feelings. all that passed, and i returned home to america feeling perfectly healthy. i was also taking 100mg of doxy a day as an antimalarial. as soon as i stopped the doxy, two weeks after being home, i suddenly developed unusual symptoms.
two years later, no diagnosis. i had been diagnosed with autonomic nervous system dysfunction, but doctors are still trying to figure out the cause. also, my fluctuating swollen lymph glands and some joint swelling, and the constantly creaking and cracking unbendable neck, do not fit a dysautonomia profile. it sure seems like i have some kind of infection or virus, but the african ones do not fit. with all the african diseases, i would primarily expect to have a high fever - i have very low body temperature, which is not normal for me.

so anyways, that is a little history on why i am concerned i am not taking appropriate measures to include all tick borne diseases. i am not sure that ld or any of the other tbd exist in west africa - but i am also quite sure that research has not been done there. there is one paper that says tick relapsing fever is in the area where i lived in west africa, but they did not test for lyme.
i was planning to rule lyme out if the igenex basic test comes back negative. now i am not so sure that is such a great idea. should i just suck up the $600 it would cost me to see a llmd?

i have nearly every single symptom on the comprehensive lyme list. now that it seems everything else is ruled out, i just can't imagine what else could be going on.
just looking for suggestions. i have a host of appointments coming up at stanford - if the igenex test comes back negative, should i just wait on seeing a llmd until i deplete the stanford system? or should i really pursue the possibility of seeing a llmd?

oh, one other thing is that when i returned from africa, i moved home to a very tick endemic area in maryland. i knew at least four or five people in my very small neighborhood alone who had lyme. if i had gotten it in md however, it would have affected me rather quickly. not sure if that is possible.

anyways, thanks for listening!!!!!! i am really really sick of being sick, and i just can't stand to wait around any longer for doctors to do all these invasive and expensive tests just to tell me they don't know. or to diagnose me with these syndromes that i don't even fit into. requiring me to see a specialist like hours away in that syndrome who then tells me i don't have it at all. sick of it. so hopefully someone here can help me!!! thank you thank you thank you!!!

wow, your doc sounds great ---- umm and where are you located?? :)

i think a tick borne disease doc is a good idea. a 23 year old college athlete doesn't go from perfectly healthy to crippling sick without a cause. and i don't know that i have it in me to go to one more specialist who will try to tell me that i have a psychosomatic disease. a person's lymph glands don't swell up to golf balls everyday over the past two years from a mental problem.

it would be interesting if a i have tbd from africa. that is the only time i recall being bit by a tick. however, i am a very outdoorsy person, and spent a great deal of time outdoors in maryland and pennsylvania after returning from africa, which also certainly could have been ample time to pick up a tick. in fact, it seems that i have always attracted them. i don't know if there is any truth in that, but i do remember my friends and i used to play this game where we would put me in a chair in the middle of a white patio area and watch all the ticks come out from the grass and crawl towards me, trying to get up the chair. like hundreds of them from all directions, i'm not even exaggerating. then one of my friends would do it, and the ticks wouldn't care.

so given how much we used to joke about my "good tick blood," it only seems fitting that i would end up struggling with some mysterious illness for two years that at this point only seems like it could be a tick borne disease, as every other known medical condition seems to have been ruled out.

i wonder why lyme disease wouldn't exist in africa? because it hasn't "made it" over there? i have read that conditions are incredibly suitable for lyme disease in sub sahara africa, so i wonder if it simply doesn't exist there yet or if there has just been no research.

i am actually just starting to see a team of doctors at stanford. do you know which doctor is doing that study??

are the titers for the co-infections more accurate than for lyme disease?

good suggestions, thanks so much!

I'm not sure I can quote from sources here on the forum and I'm not sure how to give proper credit for quotes taken from articles. Do a web search on something like "tick world distrbibution lyme disease". I turned up a 2008 study of tick/ lyme distribution world wide. It showed that there are several strains of lyme in Africa. Including one that can only be detected during an ative phase. Evidently it can be difficult to distinguish from malaria and most meds for malaria won't do it for lyme.

I live in the general Seattle area. Probably brought the lyme with me from tick bites in Texas 30 yrs ago (only known bites but no rash}.

hi gracietiger ! I think you could have got a tick borne infection from this tick bite in africa;the people in some regions just call it "tick-fever", it is rickettsia who causes it as far as I know; could it be something else or sth in addition like west nile?? symtoms are very similar. Where did you stay in africa?
hope you get better soon! dorit

Stanford study results: http://www.vicd.info/clinicaltrial.html

Titers are generally less effective. But thats how LabCorp tests for many co-infections. I think WB's for lyme and PCR are most accurate (although PCR is notoriously hard). I don't know what testing methods are most effective for co-infections.

I think Clongen actually will look at your blood under slide and look for pathogens. Then if able they will culutre the pathogen and do DNA sequencing. I am sure not cheap but if you have "mystery" bugs in your blood are haven't found any other answers then this may be an avenue to pursue.

Agree also with your view on infectious disease docs.  Unless you have an open minded one - they are generally worthless - very closed minded and dismissive (esp for Lyme but anything that doesn't fit their paradigm too).

I got my Igenex test results back and I was negative for babs and bart. My doc says that there are often false negative results. So she put me on the antibiotics for them anyway...