Here is my story. Any help or advice is greatly appreciated.
A little over a month ago I came down with what I thought was the flu. It started with a stiff neck, goose bumps, a fever and a severe headache. The headache was so bad that moving my eyes left to right caused pain. At night I would wake up with my clothes and blanket completely drenched/soaking in sweat. No stuffy nose, sore throat or cough. The fever would get up above 102.5 and it persisted for about a week. After 7 days I called my doctor to see if this was normal of the flu. She figured that maybe I just had a virus but she wanted to see me to do some blood work. When I went in to her office my temp was 103.3. I was tested for strep, mono, kidney infection - all negative. She thought my symptoms sounded like Lyme, and I have a dog, so she tested me for Lyme. IgM Western Blot came back positive for bands 23 and 41. All bands of IgG were negative. Testing was done by Quest.
We were somewhat skeptical of a Lyme diagnosis because I do not remember being bitten by a tick, I was not in the woods and I did not have a rash and I live in downtown Boston. About 3 weeks before I became ill I did a charity dog walk so myself and my dog were exposed to 100s or 1000+ dogs. So, I began treatment of 100mg 2x per day for 21 days of doxycycline. Almost immediately after beginning treatment my fevers were gone. I felt as though a fog lifted from me and I thought I was back to normal.
12 days into treatment the stiff neck returned and the fever slowly crept back in. At its peak it got up to 102.7. I was treating with ibuprofen and I would experience cycles of fever and then severe sweating. The night sweats were back as well. I also started to experience muscle weakness. I was experiencing difficulty doing things like holding my hairbrush for the normal time I dry my hair, turning a key in a lock, holding my cell phone up while I talked on it. It wasn’t “painful” per say, just more difficult than it should have been. I called my Dr. and went back in for more testing. This time she tested me for CMV, toxoplasmosis, some other mono-type viruses and she ran another Lyme test. This Lyme test was NEGATIVE. I was on day 15 of medication when my blood was drawn. She also ordered a rheumatoid factor test and an ANA test – both were normal. Also ordered were tests for C-reactive protein and erythrocyte sedimentation. Both were elevated. I do not know the CRP number but sedimentation was 55 where normal is below 20. Also, my blood test showed that in the 2.5 weeks since the prior blood test I had become anemic. All other blood test results were normal. Upon my urging she also added on a babesia test and this was negative.
Again, the fevers went away, the sweating slowly went away although I felt as though I was sweating more than normal for awhile. All in all since last Wednesday (8 days) I have been feeling pretty normal. Now I feel as though the neck stiffness is returning and my temp has been creeping up to around 99. Normal for me is around 97.5. I’m not sure if I’m just paranoid or if I am having another relapse of the same symptoms.
I should mention that I also at times feel like I am having mild heart palpitations and mild shortness of breath. I would feel at times like I just couldn’t get enough oxygen by breathing through my nose. The shortness of breath was the worst during the first round of symptoms.
How likely do you think it is that my first Lyme test was a false-positive?? Are they common when RA and Lupus have been ruled out? What else could cause a false positive test?
If anyone could help me I would GREATLY appreciate it!
Not likely, It all sounds like lyme. I was only positve on band 41 IBM and was sick for two months before I realized what it was that had caused it. I had a tick bite and dismissed it and three weeks after is when I started nausea horrible headaches and nothing stopped them. My neighbor who never even remembers a tick nor has she any pets had a mini stroke, mri was done and it was findings on it which her doctor further tested for lyme and she was also positive. One band only IGM, not sure which one, but needless to say. She is a doctor herself and a positive, like my doctor says, is A POSITIVE. Whether it be one or several. My doctor had a daughter that had it and he flat out says if you are psotive on IGM, it represents current infection. Good Luck and I hope this helps.
Sounds very much like lyme. Less than 50% of people with lyme remember a rash. It takes a doctor who knows about lyme to diagnose it. The testing is not reliable. All it takes is a brush up against tall grass to get ticks on you. Deer ticks are very small. Lyme testing while on antibiotics can cause a false negative result.
So it sounds like maybe I need to find an LLMD since I am done with my medication and not feeling 100% back to normal. I am going back to my primary care on Wednesday. She said that if I was feeling normal she wouldn't send me anywhere but if not that she would refer me to an infectious disease specialist. Where is the best place to find a LLMD in Boston??
When was your bite? I was only infected three months and have been on antibiotics almost that long with significant improvement. Make sure you are on medicine for more than two weeks. I was lucky to get a doctor that had a daughter with Lyme and knows that it must be treated aggressively and with alternating antibiotics, not just one for only two weeks. I live in Virginia, so I cant help you with the LLMD in Boston, but the Infectious Disease specialist are not all that great in this state. I dont know from personal experience, but my neighbor, a doctor as well, has lyme and her ID wanted to blame it on MS and the same with a co-worker, so be careful there. They will try to steer away from lyme if you are not CDC positive. Best of luck and I am sure someone on this board will find you a list of doctors in you area.
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