igenex testing - questions

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gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 1/10/2009 8:57 PM (GMT -6)   
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!!!

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 1/10/2009 11:42 PM (GMT -6)   
Oh wow - maybe a foreign strain of Lyme.
 
Sure seems like it would be good to go to a doc that has seen TBDs.  A  negative WB test result doesn't even mean you don't have Lyme.  Tests just support the clinical findings.  I believe the tests here in the US are developed around one of our common strains.  Who knows how a foreign strain of Lyme would show up on the US test? 
 
In my reading since I've been diagnosed with Lyme (CDC positive), there are 3 major Lyme strains in Europe and they each have a little different signature.  This is a difficult problem!
 
I'm so grateful that I found my doc - she works with immune problems, hormone deficiencies, Chronic Fatigue and Fibro.  In the course of working with fatigue and fibro, she has seen enough Lyme cases that she was able to put it all together.  An llmd could be a valuable resource even if it isn't Lyme.
 
 
 
 

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 1/11/2009 11:49 AM (GMT -6)   
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.

Staris
Regular Member


Date Joined Dec 2008
Total Posts : 20
   Posted 1/11/2009 1:41 PM (GMT -6)   

Also check out Clongen.  They are a leader in Lyme testing as well.  Not sure how prices stack up against IGeneX but worth looking at.

http://clongen.com/molecular_diagnostics.php?PHPSESSid=1dee3193e2dfa4f91020f74f95c41bc5

If you have some insurance - LabCorp is now doing ELISA and titer testing for some co-infections and they are usually covered (at least they were for me).
 
Even if not lyme and co-infections it could be other infectious disease.  Stanford is actually doing a study on a potential viral cause to CFS.  Their use of Valcyte has shown improvement in those with CFS and neuro problems.  Just another avenue to pursue although they can all be daunting at times.  Just have to be systematic and aggressive.

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 1/11/2009 3:29 PM (GMT -6)   
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!

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 1/11/2009 4:16 PM (GMT -6)   
gracietiger-
Are you still in MD? I see a good doctor in Rockville. he was recommended to me by my endocrinologist who suspected long standing untreated CNS Lyme.
14 years undiagnosed Lyme. I had a bulls-eye rash following a camping trip to NC in 1994. Swollen knees and replapsing and remitting vertigo followed for the next 14 years. All Lyme tests negative. Could possibly be B. lonestari due to being bit in the South.
Just began treatment with low dose Minocycline and Benicar.


Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 1/11/2009 4:18 PM (GMT -6)   
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}.

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 1/11/2009 4:24 PM (GMT -6)   
And I am told here that there is "NO LYME in Texas!!!"   LOL  D

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 1/11/2009 6:02 PM (GMT -6)   
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

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 1/11/2009 6:49 PM (GMT -6)   
thank you guys!!!
i was in the gambia, in west africa. it is so small, there is like no research being done there. i will look at that thread about tick distribution.
so someone mentioned west nile symptoms are similar to lyme? when i looked into west nile, i felt like i had almost none of the symptoms. when i read about lyme, i have all.
the weird thing about whatever going on is that i do not have a fever. most diseases from africa would produce a major fever. my temp goes lower and lower the worse i feel. it is usually around 96. that is sooooo not normal for me.
so perhaps i really need to be tested for these co infections? i was planning on only being tested for lyme. is it worth getting the very very expensive tests done, or going to a less-expensive lyme doc (still expensive though)?

i just feel so stressed, like i don't know what to do. do i get all this tested, or just see a doc?

i have an infectious disease doc appt at stanford in a few weeks, at the end of the month. but i am soooo skeptical of infectious disease docs.

Staris
Regular Member


Date Joined Dec 2008
Total Posts : 20
   Posted 1/12/2009 8:05 AM (GMT -6)   
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).

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 1/12/2009 9:59 AM (GMT -6)   
hi gracietiger I brought up the west nile thing; only 20 % do develop the fever; symptoms are like having a cold, stiffness of the neck, headaches, visual problems/ pain in the eyes, pain in the muscles, paralysis, disfunction / inflammation of the nervous system, erratic mood swing (normal if someone is ill...lol!), sometimes depressions, insomnia, fatiques, confusedness .... and so one (sounded familiar to me from lyme) The bad ones go with the high fever, encephalitis, epileptical, epileptic attacks.
Hope you will be able to find out what it is!! I keep you in my thoughts! dorit
ps: an id for tropical illness who was very open to (chronic) lyme helped me very much - did not expect that.

woodswalker
Regular Member


Date Joined Oct 2008
Total Posts : 99
   Posted 1/12/2009 9:54 PM (GMT -6)   
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...
9/28/08 - 11/8/08 100mg Doxy b.i.d. 42 days
11/5/08 - 11/20/08 Salt/C, grapefruit seed extract, COQ10, anti-inflammatory herbs with cat's claw & omega 3.
11/20/08 -> reduced Salt/C, omega 3, Acidolphilus and Saccharomyces(friendly yeast),low carb, no wheat, no alcohol, no yeast, no caffeine, no sugar.
Ceftin 500mg, 2x per day; Plaquenil 200mg, 2x per day; Mepron 750mg, 2x per day; Zithromax 500mg, 1x per day.

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