Thank you everyone. Really appreciate this support during a very confusing, frustrating time. I'm really at a loss right now.
Thanks for the info and link. But how do I find a doc who will order the blood tests? I know there are no Shoemarker docs in my state. Maybe in the surrounding states but I have no support, can't drive in my current condition and I'm sure if I did find one, there's probably a long wait. Also, I'm on disability. So I currently have medicare. I will be getting a supplement plan to see if that will help me out with some of this stuff but I'm not sure if they would cover any tests like that. Either insurance. So no, I haven't done the HLA test. I cannot find a doc here that knows about
both of these things. My new LLMD, the only one around here doesn't seem to want to hear my mold concerns.
Thanks to you too. This is frustrating and seems like an impossible one for me. This isn't my house. I live with one very stubborn family member who doesn't want to hear there may be mold in the house either and the reason ( or at least part of the reason. maybe?) That I'm sick. She is not going to have any kind of testing done and I can't afford it. I'm completely wiped out from medical bills these past 6 years I've been here so I currently have nothing saved and no where else at all I can go. I was hoping that the Lyme diagnosis would explain everything but I have close to 50 symptoms. but as more questions come up, more confusion arises.
For instance, I posted on another thread that when I blew my nose the other day, there was a little blood mixed in with the mucous. This has happened before but only occasionally and someone responded that this is a MOLD symptom, not Lyme and Co. Which again, all I have is a clinical diagnosis from the only LLMD around. I was hoping the Igenx test might indicate something either way but so far, it doesn't sound like it's the case. I feel like I have early onset ALZ and I'm only 39, plus so many other symptoms. As I type this the brain fog is horrific. I can list them if it would help anyone help me to further sort this out. Also, I called my new LLMD one day to complain of red, burning eyes. I had just started abx the day or two before but I had gotten this symptom before. This is another one that comes and goes. His response that this wasn't a lyme symptom. My eyes are always red and blood shot lately. Supposedly, I've had Lyme for many years but I never had these problems before. Last year, I was feeling like crap physicaly with severe chronic pain and headaches that was diagnosed as fibro and cfs. Now , a year later the pain is better but I look and feel like I'm dying. Dark circles, can't sleep at allll, eyelashes falling out, burning eyes, ringing ears, blurred vision, heart palps. etc etc etc. My fear is the LLMD is making the diagnosis because I told him I was clinically diagnosed before.But even that was a whole confusing situaton where my pcp diagnosed based on symptoms, treated and then after I improved said, oh , it prob wasn't Lyme. Huh? Back then my symptoms were much more "lyme" like too. Now they are all over the place. Its like my personality, memory, everything is gone. I'm constantly in a haze .
So what can I do to deal with all of this on my own? Esp since I can't move yet. I figured at least if I'm treating lyme now ( if indeed I have it) Then eventually I would feel better, get my mind back again and save up as much as I can to move out and start working again and get my own place, hopefully mold free. How do I know if it's lyme, mold or both? Then there was a question about
my Thyroid levels as well. Saw two endos so far and they say it's in range but I know there's a similar problem with their testing and diagnosis standards. I posted on another thread about
that as well.
So now, I don't know exactly whats wrong with me or how to help myself. I'm SO Confused. And I don't want to be on ABX and keep destroying my already sensitive gut if this is really mold toxicity and not Lyme..and I don't know if this is from the exposure from the moldy air conditioner that I got rid of in Sep, that I had been sleeping next to for months, or the mold that's probably around the house somewhere or a combo of those things too.
See how confusing this all is?
What can I do? I'm so desperate. I thought my new LLMD would look at all of this but he just zeroed in on my symptoms and my past clinical diagnosis. Never found a rash or tick back then either.
Sorry this is so long and for all the mistakes. I'm feeling pretty desperate at the moment. I know it doesn't sound like it but I actually used to be pretty smart and well spoken.
Please help if you can. Again, I can list my symptoms if it would help anyone help me sort this out. There are a lot though.