Posted 4/30/2015 10:35 AM (GMT 0)
Hi all,
Someone asked me to post about my next appointment/status update, so here goes...I'll keep it as brief as I can.
My first appointment was in February. Had a zillion blood tests, etc., and was put on a pulsed regimen of minocycline, biaxin, and bactrim (starting with the first and phasing in each successive antibiotic weekly), with flagyl every third Saturday and a week-long break every three or four weeks. Before I ever looked into finding a Lyme specialist, I started taking some herbal supplements to see if I'd have any herxing reactions, and I did (mild compared with reactions to antibiotics), so I pursued a doctor. The doctor took me off a couple of supplements and added a couple new ones in specifically for detoxing.
After the first appointment:
-All labs came back normal, except a slight sensitivity to dairy.
-As soon as I started minocycline, I broke out in hives and rashes all over, with a terrible bubbly rash on my lower abdomen; by the next week, my mind was blown and I had the memory of a pretty well advanced dementia patient (really). I had major flare-ups of all physical symptoms, but the worst were that my "stretch marks" (bartonella rashes?) burned like fire for about a week and a half, and I was having the characteristic tendon pains of bartonella.
-The worst/most persistent and consistent ongoing symptom is fatigue; I've spent much of the past six weeks in bed, hardly able to get out except (mostly) to get to work.
-Then I got back the one remaining lab, the C4a complement, and it was sky-high at 19,800 (normal range = 0-2,800) indicating nonspecific inflammation.
-I stopped taking minocycline because of the reaction; my dermatologist said it was an immune system reaction that could be potentially dangerous and unlikely to be herxing.
So my appointment a couple of days ago:
-The doctor wanted to know all my symptoms in detail. I read from my calendar.
-She was concerned and said that I should be much less symptomatic than I am right now, but there could be a number of reasons why I'm not. First, since I've probably had Lyme for at least the past 18 years (I was first diagnosed in 1997 at age 18 and treated w/ 2 weeks of doxy @ 200mg/day), I may just have an incredibly high load of infection that will take a long time to slowly treat. Or, she said, antibiotics simply do not work very well for some patients, and alternative therapies may work better. Or, regarding the C4a, I told her that I definitely have black mold in the ventilation of my apartment building and she said that whether or not I have a mold/fungal infection in my system, just having it in the environment is very taxing on the immune system, and it could be partially responsible for the high C4a and it could be making the treatment less effective. She told me I should move as soon as I can, if possible. (That wasn't unwarranted; moving has been on my to-do list for a long time because I know this is an unhealthful environment...I've just been SO tired and haven't done it.)
My first round of tests included Western blot Lyme, as well as bartonella and babesia tests through standard Quest labs. The doctor said that if I want, we can now do Igenex lab tests (she recommended only Lyme because she said the bartonella and babesia tests from Igenex aren't much more sensitive than standard lab ones)--she saves that for a second round if necessary because of the expense. She asked whether I want to do that and left it up to me. I asked if it is necessary, and she said that most patients are more confident with treatment protocols, and adhere better and persist with them better, when they have positive tests so that their illness is defined. She said again that I definitely, without a doubt, have bartonella (the skin + symptoms) and because of other odd symptoms she's pretty convinced I have babesia as well. I told her that the bottom line for me is that I want to recover my health and get my life back, period, so at this point if she's certain regarding the clinical diagnosis and I'm pretty certain based on many months of reading everything I can find, the test is not that important to me, especially seeing such a high C4a complement level. So we agreed to forgo the Igenex test for now and proceed with the following prescription:
-She told me to stop taking almost all the supplements. She said that it's possible my body is "too toxic" because of the super-aggressive treatment (I'm taking LOTS of supplements in addition to antibiotics) plus the mold, and so she thinks I should stick with prescription antibiotics only until the next appointment and see if anything changes.
-The new antibiotic regimen is to continue with biaxin and bactrim, and she added in rifampin to replace the minocycline. She said rifampin has been shown to work well for bartonella, which continues to be a primary problem. (She said that the inflammation of my bartonella "stretch marks" has improved since I first saw her.) Flagyl every other Saturday.
-Move. That's part of my prescription. She's not taking liberties here; I told her I could benefit from an official "push" to get this done, because I need to do it for my own good--I'm in an old D.C. apartment building and I'm certain the air here is not doing my health any favors.
-Before I move, get another round of blood tests, including CBC etc., but also including the C4a.
-Before my next appointment, get another C4a test to see if the level drops a short time after having moved. She discussed using C4a as a gauge for treatment efficacy and said that it can be useful, but if the patient clings to that as a sure measure of effectiveness, it can be discouraging if the number doesn't consistently decline.
So overall, I feel like I am making progress, albeit slowly.
I've seen a lot of complaints about doctors/LLMDs here, but I have to say that mine is an absolute godsend to me. I had to resist the urge to hug her after our appointment (I actually did hug her last time, without thinking), just because she actually LISTENS, asks questions, speaks to me as if I am an intelligent adult who understands what she is saying, doesn't rush me out the door, etc. I feel like we're almost equally invested in my wellness, and I truly believe that this doctor is motivated by the wellness of her patients. Other than my psychiatrist, I have never had a doctor who I feel actually cares like this--not necessarily "cares" in a familial kind of way, but certainly feels professionally invested in improving her patient's health. It's absolutely incredible to me. It's also validating. I've been so to many generalists and specialists over the past five years, and almost all of them have visibly recoiled when they see the thin guy covered in stretch marks--it's a human reaction, but not one person before this doctor (and then my dermatologist while doing a mole check) has told me "this is not normal--unless you've been extremely obese, you shouldn't have stretch marks all over your body")...they just sort of wince and then put on their professional face and take vitals.
OK, now I've gone off onto an emotionally charged tangent. Anyway. Quick summary:
-Standard labs normal w/ exception of sky-high C4a complement (inflammation)
-Stopped minocycline; now taking rifampin/biaxin/bactrim + flagyl (odd weekends)
-HUGE flare-up of all neuro symptoms after having started antibiotics. They've persisted on and off, but overall are slowly improving.
-Tendon (soles, palms of hands, elbows) tenderness on and off
-Joint pain MUCH improved since having started treatment...hardly ever happens anymore!!
-Stretch marks have improved according to the doctor, but I still can't bear to actually look at them myself so I will just trust her.
-Love my doctor. I'm not expecting any miracles (hoping for some, though!), but simply because of the unprecedented level of respect.
-Very hopeful and willing to do anything and everything to get my life back.
-I turn 37 next week and at this point actually have hope that my 40s might be a better chapter than the 30s have been. :-D