Yesterday I took the train to DC to see my Lyme doc and go over the big stack of test results piling up over the last weeks. I'm posting this primarily for you readers with Lyme, so you can compare protocols and general hypotheses.
My bloodwork showed various indications of a deranged immune system, such as high TPO thyroid antibodies, low lymphs, and IgM positives to cytomegalovirus, HHV-6, and HSV. An IgM reaction comes after a new exposure, and LD (Lyme Doc) explained that those viruses are certainly ones I've been exposed to long before now, but my immune system is on hyperdrive, and confused, and running around trying to put out fires all over my body but not in a competent fashion.
I asked if there was any way to tell when I had gotten infected, partly wanting to know if it was before having children, since Lyme can be transmitted in utero. But LD said no. I could have gotten infected way before showing symptoms, or not -- that the only thing we know for sure is when my immune system got overwhelmed and started losing the battle.
I'd been reading about various protocols for the various coinfections -- babesia, bartonella, and ehrlichia, among others -- and that different antibotics and other meds are used depending on which coinfections you have. LD said that with my profile, she assumes I have them all. Such an overachiever for once! She thinks the current testing is unreliable enough not to be worth doing, and I'm happy about that because it ain't cheap.
What she plans to do is a kind of dance with the bacteria, hitting one and then another, retreating, BAM, retreating, going for another. This kind of slow intermittent antibiotic treatment is based on the work of Thomas McPherson Brown, who had tremendous success treating rheumatoid arthritis patients in this manner, with the idea that the body was not attacking its own joints for no reason, but because there was a devilishly sneaky infection (often mycoplasma) which was causing the immune response.
So this will not be carpet-bombing in an attempt to cleanse my body of infection. It will be, as I said, a kind of dance -- I'm picturing the tango -- where the antibiotics are gently killing the bacteria, then backing off, not scaring it into driving deeper into the tissues where it does more damage and is harder to reach. The idea is to train my immune system to take over the work, to give it some order and direction so that it will calm down and focus its efforts where those efforts will matter.
I have asked my super-organized daughter to help me make a system, because with my memory problems this protocol is daunting to manage. Monday, Wednesday, and Friday I will take Zithromax, Septra DS, and Omnicef, all twice a day. On Thursday and Friday, Flagyl. Nattokinase with the antibiotics because the enzyme "pokes holes" in the bacterial wall so the antibiotics will be more effective. Also adding 5000 iu of vitamin D3 and carnitine to the boatload of supplements I'm already taking. I reluctantly agreed to take Neurotin to calm my central nervous system down and hopefully get better quality sleep. After two weeks, I take a holiday of a week with no antibiotics or Nattokinase.
LD said to expect neurological and other symptoms to get worse, and then slowly better. My seat belt is buckled. I haven't put myself in a doctor's hands like this in many years, and I'm filled with fear and relief and optimism in about equal parts. I'm more than willing to go through worse if it's on the way to better, much better. I spoke to my 87 year old father this morning, who told me he takes five pills every day. That sounds pretty good to me. If I can get back to just five pills, I will be doing a tango down the middle of my street.
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