Posted 3/25/2014 1:33 AM (GMT 0)
For those of you who don't know my story - I was bitten by a tick in October, started with severe anxiety and insomnia in November, which passed, and then I had flulike symptoms on and off coupled with joint pain in my knees and cystitis in December, and then that passed, and then had the myalgia, tingling, numbness in extremeties, migratory pain, and muscle twitches in January- all of the fun stuff! It was the tingling and numbness that raised a red flag to Lyme. I refused to believe the BS fibromyalgia and post viral syndrome diagnoses I received from the Long Island Doctors. So I went into a walk in clinic and convinced a Dr there to write me an Rx for doxycycline - she wrote just enough to hold me over until I saw my LLMD on Feb 25th.
My symptoms improved on the doxy twice a day, but my LLMD increased the dose to three times a day, loaded me on supplements and put me on an anti-Lyme diet. Three weeks later, when I saw her again, I was left with very few symptoms - the twitching (so increased my magnesium to 500mg/day), rt shoulder pain, and occasional rib pain with migratory joint pain that's few and far between. So overall I would say I am 85% better.
So, at last week's visit, she went over my bloodwork.
I have IGM bands 41,18,37,58,93
She said that Lyme is a clinical diagnosis - even if my tests came back negative, she still would have treated me. She was more interested in my symptoms rather than my results - now that's a good LLMD!
other interesting test results - I don't have the MTHFR gene mutation
my Compliment C4a level is only 881
This is a very important topic I would like to address. When I joined the forum, everyone was asking me why I was only on one antibiotic. Why wasn't I taking cyst busters? I got really worried, and so this past week I asked her.
She made it so clear. I was herxing on only doxycycline 200mg a day. She said that was a very good sign. She did not want to introduce any other antibiotics or cyst busters to my body, even if she suspected the possibility of Bartonella. Why - because the meds are not the only thing at work here, we can't forget about our own immune systems. We all take probiotics in order to restore the bacteria that the antibiotics deplete in our system. That same bacteria is what fights off infection. We can only take so many probiotics, and if someone starts off by taking three antibiotics at a time, there just isn't enough good bacteria left, which means our immune system is weakened and is no longer a part of the battle. I also asked her about the CNS. I had severe anxiety and insomnia as earlier symptoms, and then the insomnia returned in January - so doesn't that mean the lyme got into my brain? Her answer was "yes". But the doxycycline does not cross the CNS barrier, so how will I get the lyme out? She said that my immune system will do the job. And that made perfect sense, because after my fifth week of doxy, the insomnia did go away.
The place I go is Heavy on nutritionals. They firmly believe that if you boost your immune system, it will do a lot more than you would think. Her treatment plan is to have the doxycycline bring the bacteria down low enough and leave the rest to the immune system. I am currently on doxy 400mg a day, and at this last visit, besides increasing the doxy dose, she added grapefruit seed extract as an herbal cyst buster. She said she does not like flagyl or tindamax bc she believes they do more harm than good.
I see her again in four weeks. If there is not enough improvement, she will then change the treatment plan. But she is optimistic about my recovery. What happened this weekend? I seriously got a headcold. I posted about this as another thread, bc I was having a hard time understanding how I could be getting sick while on antibiotics. Where does mucus come from - from your immune system, so that means I am in good working order, for now! I seriously would write so much more, but I figured I would address one thing at a time.