Posted 5/28/2015 1:46 AM (GMT -7)
I haven't looked at this message board in a couple of weeks because I've been busy (!!), but since so many people here have been so supportive and helpful, I figured I'd check in with some good news.
First, I finally got up off my lazy (fatigued) bum and put in my moving notice and found a new place that, hopefully, is not infested with mold. An amazing member here identified some microscope images I posted as showing black mold, which I already knew was growing on my ventilation. I checked my tap water under the microscrope and--you guessed it. My LLMD had told me that if I have mold, I should move ASAP, no matter what, because it is making me ill and it could even prevent or delay recovery from Lyme, despite the use of antibiotics. My c4a complement level was 19,800 when it was taken a few months ago (normal range is 0-2,800; this blood test shows an inflammatory immune response), and a high c4a without a high c3d can indicate a Lyme and/or mold toxin infection...double whammy. I was tested again yesterday and I guess I'll have the c4a results sometime next week...my doctor wanted me to get tested before I move, and then again a short while afterward to see if the new environment reduces my inflammation.
Secondly, I've been on a pulsed antibiotic regimen since March: 3 weeks on, 1 week off, repeat, with Flaxyl every third Saturday. One of the original antibiotics was minocycline, but I had a bad immune response (terrible rash on my abdominal/pelvic area) and so I was switched to Rifampin. (I should probably note that my bartonella symptoms are at least as bad, if not worse, than the actual Lyme symptoms.)
In case anyone is interested in comparing notes, or especially people new to diagnosis/treatment, here's how I have responded to treatment so far:
February: Took an herbal/dietary supplement protocol before finding my LLMD; experienced some mild flare-ups that I thought could be herxing, so I found a doctor to investigate further.
March: Began antibiotics as described above. First week was difficult, with lots of rashes, nerve and joint pain flaring up. Second week was H-E-L-L, not so much because of the pain and neuro issues, which were bad, but because I pretty much lost my mind. I had constant panic attacks, my memory seemed to have been limited to 30-second increments, and I couldn't concentrate or think at all. I couldn't even follow reality shows on TV and just sort of sat and stared like a veggie. Weeks 3-4 saw improvement in pain and cognitive issues, but EXTREME fatigue persisted and I was pretty much confined to bed except being able to get to work on most days (I did call in sick a few over these weeks because of the fatigue.).
April: More of the same...seemed to have plateaued with respect to symptom improvement. Occasional neuro and joint symptoms, all mild, but tinnitus and hearing loss on/off were probably the worst of it...except the persistent fatigue. Saw my LLMD at the end of April and (as mentioned in a separate thread I just posted), she told me I should move ASAP when I mentioned that I've seen black mold in my apartment...but more on that in the other thread.
May: Turned 37! (Although they say Lyme isn't a terminal illness, I've been though so much that I'm always a little surprised each time I make it though another year, in all honesty.) And then...breakthrough! For the past couple of weeks, my energy has been higher than it's been in many months. I've been able to work out three times, and unlike months before, I haven't been incapacitated afterward these times. I'm taking it slowly, but I've even done some minor weight lifting, without suffering extreme joint pain for weeks afterward as has been the case every time I've tried to exercise over the past couple of years. I don't know if this will continue, but I pray it will. I know from experience that Lyme symptoms cycle in extremity with or without treatment, but I'm very hopeful that the treatment is causing these improvements this time.
So the bottom line is that life isn't perfect--still having lots of symptoms, particularly some brain fog and memory issues, hearing/tinnitus and blurry vision, clumsiness, and lots of skin problems, but overall, I feel like a functional adult for the first time in a long time. Hurrah!