See an ILAD doctor first or just get tested off Igenex?

I'll try to make all this as concise as possibly, so bear with me!

In 2013, I went camping with some friends near the Dunes in Michigan. We picked a campground that was dead center of a heavily wooded area because we wanted a rustic and gritty experience (lol). Within a week or two of that experience, I came down with a pretty nasty flu that I needed to be on antibiotics for. Towards the end of being sick, I got what has become the first of many staph infections. I went to the doctor for that, got more antibiotics, and went on my way. A few weeks after that, I started developing some odd symptoms that have mostly persisted to this day:

said...
Skin: Frequent infections / rashes (at least one or two of these were bouts of shingles). Went from having relatively oily skin to dry, 29 y/o acne-ridden skin. Sebhorreic dermatitis appearing in new places it wasn't before. Most strikingly of the skin issues, I had this rash on my shins for over a year. Biopsy only told me it wasn't fungal related.

Pain: Freaking numbness and stabbing pains in my arms/legs/hands/feet. Numbness and pain comes and goes. Once, they disappeared for months and came back after I got the flu.

Brain: Severe fatigue and insomnia. I wake up 4 or 5 times a night, slept like a brick my whole life prior to getting sick. Sometimes I wake up and fall back asleep within a minute or two (this repeats itself every hour, usually after the 4th hour of sleep). Sometimes I wake up and my head feels weird and I can't get back to sleep. Sometimes wake up hallucinating and it causes me to jump out of the bed. Ridiculous memory problems. Forgetting stupid things like the phone number I've had for 8 years or my own address.

Eyes: Vision problems (bright light hurts, can't see or drive at night, bloodshot eyes)

Body: Developed acid reflux seemingly overnight. Vitamin deficiencies (b1, b3, b6, b12, C, and D). Possibly abnormal cortisol levels(?) Endo had me to a morning cortisol test and it was very low, but then said I was normal after we ran the ACTH stimulation test. Not sure if this is worth mentioning.

So, I've basically run the gambit of seeing doctors about mostly the sleep problem because it is the most crippling issue. Every doctor I see eventually says see a psychiatrist. This is sort of ironic because 1) I've experienced depression/anxiety before, have sought treatment on my own, and I know the difference; and 2) I was literally in grad school studying to BE a psychologist.

The most recent doctor crap was with my sleep doctor. I saw a sleep therapist for about four months and she basically said that something biological is going on and that there wasn't anything she could do. The sleep doctor has prescribed Adderall for fatigue and Flurazapam for waking up at night. She was convinced if I keep taking both that my ability to stay asleep will go back to normal. Neither of those things happened for like two months, so she wanted me to get tested for narcolepsy. Long story short, I told her I didn't think I could sleep as much as they'd want me to in a sleep lab because I wake up so much (and they require you to be off all meds for the testing), so she said go see a psychiatrist.

Three years later, here I am. I had to drop out of school, had to quit my job, lost a three year relationship, moved back in with my parents, I'm broke, and I'm still just as sick as I was when this all started (with no closer answer as to what the hell is going on with me). At one point, I asked a rheumatologist to test me for Lyme's disease (because of the circumstances surrounding how I started getting sick) and she told me that she did. Come to find out, she did not.

First, should I even be tested for Lyme at all? I'm sure most people would say "OF COURSE" based on my symptoms and circumstances surrounding getting sick, but I literally have about $51 to my name. My mom is the only real advocate I have for my health in my life and she doesn't have a whole lot of money herself. Do my symptoms sound more than just a generalized hunch that Lyme could be it? I've probably been tested for everything that Medicaid will allow and my primary doctor seems like she doesn't want anything to do with me anymore. It's fun because I'm still having all the same issues and no solution.

Second, I have a doctor that would probably order the Western Blot for me off of Igenex. He is not "Lyme Literate" but he is sympathetic to my plight. Because I am reliant on my mom, I have to do whatever she can afford. Should we see an ILAD doctor first and have them order the test or should we order it through my non-Lyme doctor? I'm pretty confident an ILAD doctor would order the test if I saw them and explained my symptoms, but if I got tested and it said I didn't have Lyme, it would just be more money for the appoint that we don't really have.

Lastly, if we did go about ordering the test off of Igenex, would I be shooting myself in the foot for only ordering the basic Lyme panel, rather than the complete? I think my mom called to check the pricing on both tests and the basic panel was about $275(?) and the other was either $495 or $795. Either way, no clue how we would afford it.


So, yeah. Thanks for reading. This has all been the worst experience of my life. Being thrown from doctor to doctor, begging for help, and then having them just tell me to piss off... I don't even feel like a person anymore. I would kill just to have one normal day where I don't feel so tired and one night where I sleep all the way through. You know, like how it was before all this happened. Even if this isn't Lyme, hell, I don't know where I can go next. I'm on Medicaid, but I feel like I've exhausted all my resources. I'm not even sure if my primary, at this point, would refer me to anyone further to help me find answers. How do people get through this :(


EDIT: I literally just read a post a few down with someone having the same questions. Sorry :/ I guess my first question is the only one that still stands. Call this a venting experience, if anything :/

Post Edited (Josiah) : 2/20/2016 2:44:42 AM (GMT-7)

Hi Josiah,

Health insurance won't pay for IgeneX testing...the basic WB test with IgeneX costs $210. Insurance will, however, pay for the two tier test (ELISA/Western Blot) through your local lab (notoriously inaccurate).
You could ask your friendly doc to order Western Blot only through your local lab. It would be covered by insurance and it could be positive. If it proved to be negative you could then have the IgeneX the testing done.

I know this because finances are an issue for me as well. I had 2 negative ELISA's (never had the WB) drawn through insurance. I finally did my own research and had ordered the IgeneX test when my third ELISA test came back positive....and the WB was as well. (insurance paid for my CDC positive WB!)
I'm grateful because I had health care practitioners who were listening to me, and were willing to continue to test. They didn't know enough to send me for an IgeneX test, though. They bought the IDS/CDC propaganda.

Your story sounds like so many that I've read. I'm so sorry! This forum is a great place to land, though...I've only been here a couple of months and I've learned a lot. The people here are incredibly supportive and anxious to help.

Kathie

But he would have to come up with $210 for the basic WB test, and I suspect even that might be a hardship for someone with $51 to his name.

If he starts with a generic lab, he could get the entire thing paid for up front, and he could actually get a positive result.

Finances are an issue for me. I've decided not to do the coinfection panel...those tests are less reliable than the borellia tests! I'll make my own clinical diagnosis for those as I learn more. After all, I knew I had Lyme when everybody else said "no." Learning to trust my own intuitive wisdom has been a major lesson for me through all of this.

That's true! Took me two capsules of knotweed to get an answer.