Hello. I've been having misc. symptoms for about seven years: joint pain, confusion, issues with balance / depth perception, muscle pain, extreme fatigue, sensitivity to cold, various food intolerences, shaking feeling at base of skull and internally, I'm sure there are more I don't remember at this moment.
Everything started after I'd moved to a house on some acerage in SE lower Michigan. I'd never even seen a tick before but while living there had multiple tick bites / known exposures. I have had dogs for my entire adult life and an indoor outdoor cat. I was tested for Lyme when the symptoms initially started and was negative, I was then sent to a variety of doctors, infectious disease, rheumatology, I had X-Rays, MRI, sleep study, a ton of blood tests. Nothing significant ever came back positive. I was told over and over I did not have Lyme symptoms, I started getting all of my medical records and at one point noticed someone had written I had somewhat flat affect and every Dr. I saw after that said I needed to go to therapy. My primary Doctor did fill out FMLA paperwork for me as I was hoping to see someone on the east coast at the time for a second opinion but my employer refused to allow the FMLA time (which is another long story completely). I just quit going to doctors anymore at that point. I read everything I could on Lyme because it was the only thing that made sense to me for my symptoms. I started taking teasel extract, using the sauna regularly at the rec center and cut out all foods that seemed to be making things significantly worse (wheat, cow milk dairy, nightshades) and sort of limped along until the last couple of months.
A little over two years ago I moved to the northwest area of lower Michigan, near the lake. I continued to have pets. I continued to encounter ticks on them and on myself. I regularly hike on trails in the woods. I lost access to the sauna as there is no rec center here. Last fall I had a badly engorged tick on my back, there was no bullseye but it was extremely swollen, I had nausea, fatigue and worsening joint pain. I didn't see a doctor immediately. I had not found a physician here and figured I wouldn't get any help due to my previous experiences and the worsening of symptoms sort of faded back into what I had been experiencing prior to the bite. Recently though I started having episodes of worsened confusion, racing heart, vivid nightmares, I would wake up sometimes hourly with my whole body shaking and it would take a while to calm down. I could not deal with stress at all. It was like my body wanted to completely shut down with even minor stress, like making a small decision I would normally barely have to think about.
I found a new doctor and was given a series of tests. I asked for Lyme and she added it. Everything except Lyme came back normal.
IgG IMMUNOBLOT Negative
IgG BAND(S) No bands detected
IgM IMMUNOBLOT Positive
IgM BAND(S) p41, p39, p23, kDa
INTERPRETATION SEE COMMENTS
Consistent with early infection with Borrelia burgdorferi. A new serum specimen should be submitted in 14-21 days to demonstrate seroconversion of IgG. IgM blot criteria is of diagnostic utility only during the first 4 weeks of early Lyme disease. -------------------ADDITIONAL INFORMATION------------------- CDC criteria require >=5 bands for IgG or >=2 bands for IgM for the Immunoblot to be considered positive. Bands (e.g.,p41) may be detected in patients without Lyme disease, and patterns not meeting the CDC criteria should be interpreted with caution. Immunoblot should be ordered only on specimens that are positive or equivocal by a FDA-licensed Lyme disease antibody screening test (e.g., EIA). Test Performed by: Mayo Clinic Laboratories - Rochester Superior Drive 3050 Superior Drive NW, Rochester, MN 55901
I was started on Doxycycline 100mg 2X/day. I'm on day thirteen of the fourteen day Rx.
I was referred to Infectious Disease. I saw the doctor there yesterday. He told me that my test was absolutely, no doubt in his mind, no further discussion needed, a false positive. He said I had no symptoms of Lyme (although the only symptom he could name was one swollen joint, he said people with Lyme have only one joint affected and it is always visibly swollen). He could not answer how the specific bands were positive just said I should have never been given the test because it is unreliable and the repeat test would not be ordered and I should stop thinking I have Lyme and immediately stop the Doxy. He also said that since I had seen a Rheumatologist previously that no one was going to be able to find out what was happening with me if she had not...
So anyway, obviously he sucked on many levels.
I guess my questions are: Are these Lyme symptoms? I mean it seems like they are from everything I've read but he is the second doctor to look me straight in the face and say that I do not have Lyme and none of my symptoms are consistent with Lyme. I've been told this so many times by people who seem to be contradicting themselves (many of my symptoms are actually listed on the Lyme handout I was given by his office on my way out) that these are not Lyme symptoms. I feel like I'm in a alternate reality in these office visits.
I updated my primary doctor and she suggested I see an allergist for the food issues I've been having and now a rheumatologist also but has anyone had any success with just continuing to see random specialists? I don't really want to repeat my previous pointless journey through a ton of expensive tests if these are all just Lyme symptoms.
Has anyone had a positive Lyme test and then found it was actually something else?
I am open to any thoughts or experience anyone would be willing to share. I feel (after starting the Doxycycline) that some of my cognitive issues are starting to clear. I spent years being barely able to read with any comprehension but didn't stop trying. I can read on unfamiliar topics without taking breaks and with some understanding now. I am concerned the Rx is not enough and I will go back to my completely clouded brain... I really don't know where to go from here.
Thanks for sticking with me I know it has been long. I have been looking at this forum for a while but have not joined and have been able to find a lot of useful information so thank all of you for that as well!
You had many tick bites, symptoms consistent with lyme and co's, and recently a positive lyme test.
If that doesn't indicate you have lyme disease...what the heck would? My goodness - those Dr.s are clueless.
As Missouri stated - you need more treatment than 2 weeks of doxy (at half dose only) - it will take many months...to years to fully treat your infection(s)
The good news...you now know for sure what you're dealing with and can start treating.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi