Undiagnosed Lyme

Hello all, my name is Bryan and I am almost positive that I have had Lyme disease for about 7 years now. I have sore joints all the time (I didn't know there could be a soreness/pain that deep that nothing could touch it). Fatigue, headaches, sleep disturbances (I take melatonin now, otherwise the night terrors were too bad). I became intolerant to gluten and dairy around 4 years ago (boy that took a while to figure out). I also have visual disturbances (strobing, vision feels like it's closing in on the edges). The worst two symptoms for me though are the mind fog and the depersonalization. My memory is so awful and I also have trouble enunciating and often slur my speech. The timeline fits and I was also up in the woods of Northern Minnesota around 7 years ago when a friend got bit and contracted Lyme disease (I found over 12 ticks on me that weekend). I'm sure I'm forgetting to explain some symptoms that I encounter but the mind fog is particularly bad today. I also have many issues with anxiety (including heart palpitations) and depression but I supposed those aren't necessarily related. I also get sick very easily and very often.

about 2 years ago I was trying to get this all figured out and went to almost a dozen doctors and none of them could tell me anything. I gave up on them eventually and figured that if I followed my diet well enough (eating certain things makes the symptoms worse) that I could do this on my own. I am stubborn and if it wasn't for the depersonalization I probably wouldn't be seeking out help right now, that one is so hard to deal with.

It's too perfect for it not to be Lyme in my opinion. I went to my regular MD and got tested and it came back negative (IgG and IgM). I have heard that this probably means nothing however. After reading here it seems like IgeneX is the go to testing company. My question is this, is it best to order the complete Lyme panel from IgeneX? I read that I need a doctor to sign off on the test, is that necessary before or after I order the test? I have a connection to an infectious disease doctor and although she is on maternity leave she thinks she knows one or two people who may be able to treat Lyme (not sure if they are Lyme literate or just familiar with infectious diseases - the fact that she said not to go to a regular doctor lends me to put at least a little faith in her).

I reside in the Twin Cities, Minnesota if that is of help. I would like to thank everybody for this resource and my best wishes go out to all that are dealing with this disease (and other tick-related diseases) and helping others deal with this disease.

Bryan

The "New to Lyme" thread at the top of this Forum offers some great resources for finding drs, but I have found it easier to just connect directly to other people in the area via joining your state's and/or city's Lyme FB pages. You can also contact the Minnesota Lyme Association to learn more about resources in your area. I would email them, too, to see if they can point you in the right direction. http://www.mnlyme.com/

Bryan,

I am assuming you are in Minnesota ? I do not know of doctors in your area that test for lymes but I know of a doctor in VA that does and from what I hear she works with people out of state. I am being seen by a doctor here in CA. She works closely with the doctor in VA.

I am currently being tested for Lymes . I have had many health issues for over 20 years. Thyroid, un explained childhood weight issues, nerve issues, body pain, joint pain, fatigue, bladder disease, muscular pain , etc. The worst has been the last year. I cannot begin to tell you how many tests I have had and treatments to try and get me out of pain. I am in chronic pain , deep fatigue, nerve sensitivity, nerve/muscle twitch in shoulder, intestine issues, sleep issues and joint pain, chronic UTI's have been the worst. The brain fog is no joke. I am reduced to taking pain meds around the clock and either calms forte or melatonin at night. To make a long , long, long story short I was referred to a doctor who has practiced western medicine for over 20 years. Ironically she is my best friends husbands family friend. She is not practicing homeopathic medicine but incorporates western medicine when needed. A very good balance. Anyway, I went to see her because western medicine has gotten me nowhere but only a band aid ( pain meds) which only make me semi functional . I was shocked when she suggested Lymes. Come to find out I was bite while camping when I was young. I had the whole bulls eye rash and all but I did not come down with any other symptoms so my parents thought it was a spider bite. We will see in a few weeks what my results are but I know it can lay dormant in your system for years. the bacteria also create biofilm which can cause false negatives etc. It would be bitter sweet if it is lymes. at least I would know what it is and there are ways to combat it.

http://ruthkriz.com/contact-us/

Bryan

Thank you! I am in college too. Had a 4.0 until I had to take an F because I could no longer attend class. I completely understand your fear. Praying strength and mind clarity for you.

Laura

Aryazmommy - sorry it took me so long to reply! How is school going for you right now? I'll try and send you a private message after I make this post to check in.

Well I got my IgeneX lab results back about 3 weeks ago.

IFA - 80 (positive)

IgM (negative both IgeneX and CDC):
**31 kDa = IND
**41 kDa = +
**83-93 kDa = IND

IgG:
**41 = +

Even though it says negative on the IgeneX results, this is a positive diagnosis for me. The IgeneX results, mixed with my history of tick bites in lyme heavy areas and my symptom progression fit far to well for it to be anything else. It's too elegant of a solution. 3 double starred bands present (although 2 under the calibration standard) plus the IFA being positive as well. What do you all think?

I got the names of 3 LLMDs in an E-mail from another member (thank you very much! - not sure if I'm allowed to say who you are). I had an appointment with one of them for a month and the day of my appointment they called and said that the doctor is not accepting new Lyme patients or patients in general. I wish they would have called sooner but oh well. That doctor mailed me a list of 5 LLMDs in my area. 2 of those LLMDs are in my network. I called the first one and they said that the doctor was not accepting new patients. I said that I was referred through the first doctor and they said they might be able to get me in, but it's $400 an hour and the first appointment is an hour and a half. This is through a naturopath clinic even though the doctor is a MD. My insurance won't cover that and so I tried the second one.

Well, I got an appointment but it's in February. I need to do more research on things that I can be doing until then but every time I read about Lyme online I invariably get a panic attack (which I'm just calming down from enough to write this). I wish this was easier and I wish my appointment wasn't so far away. I once again feel bad for using this board for selfish reasons so far and I really want to start participating in the community and helping others through their hard times, but it's so hard and scary for me to get on these boards.

I do have that list of 5 LLMDs in Minnesota if anybody would like me to send that to them, I would be happy to pass the list along (even if many of them are booked up indefinitely or far into the future). On the bright side, I'm fighting the good fight and I'm 5 weeks away from getting my degree! Its getting harder to get by day to day and I'm scared because this is what started happening with my symptoms last time that I had to drop out. At least this time I know what it is and so maybe that will make it easier when I don't feel like I'm losing my mind for no reason and now I know that the feeling of losing my mind and my grip on reality as my body feels like it's dissolving into the air has a causal effect that maybe, just maybe won't be a part of my life forever.

I found that there is a Lyme support group in Minnesota that I was really hoping to get to (meeting was last Tuesday - same day the LLMD canceled on me) but I had a midterm the next day and couldn't make it. They meet once a month so hopefully I can make it to the next one! Anyway, writing this made me feel a lot better so if anybody read it all thank you very much, I appreciate it.

Bryan