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Posted: Fri Sep 05, 2008 9:17 am Post subject: Steve's Updated Regimen
It's been a long time since posting here on Steve's treatment regimen. Steve has secondary progressive MS, and after he got worse on Rebif, we looked for a different direction in treatment. I found the Vanderbilt long term combined antibiotic protocol for the treatment of chronic Chlamydia pneumoniae infection, Steve tested positive for chronic infection, and he has been taking antibiotics ever since. Very early this year, we learned that Steve also has Lyme Disease in addition to the chronic infections we already knew about: Chlamydia pneumoniae, Mycoplasma pneumonia, EBV, CMV, HSV-1. Those are just the ones he's been tested for. Steve also takes Valtrex for the viral infections and Amantadine to squelch Type A flu infections. We also discovered this year that he's been experiencing secondary porphyria. This is common for those chronically infected with Chlamydia pneumoniae, and it's exacerbated with antibiotic treatment.
It has been 2 years since Steve began the Wheldon version of the Vanderbilt protocol. Since learning that he also has Lyme, he has been under the care of a high-profile Lyme Literate Medical Doctor in the northeast in addition to his MS doctor in Texas. The first tweak the Lyme doctor made to Steve's regimen was to up his doxycycline intake from 100mg doxycycline twice a day to three times a day while taking 250mg azithromycin every other day and 100mg fluconazole twice a day. That lasted about 40 days, then he dropped the fluconazole for about a month. Today ends a 30-day course of 750mg tetracycline twice a day, 250mg azithromycin every other day, and 100mg fluconazole twice a day.
If you think the fluconazole was prescribed to protect Steve from yeast overgrowth, you'd be wrong. It has been discovered that fluconazole kills the cystic phase of Borrelia burgdorferi (the Lyme bacterium), so that was the rationale for periodically adding it to Steve's regimen. Steve has had a problem before with yeast overgrowth, but it was brought under control with a few months on Nystatin, and it's been kept at bay ever since with the Whole Approach Anti-Candida Protocol.
The secondary porphyria issue is now being controlled very well with a double dose of Questran when nature calls in the middle of the night and with glucose tablets before meals. Getting this problem under control made a significant difference in Steve's day to day condition and functionality.
Still, fatigue was a huge problem. I pressed Steve's primary MS doctor about the fatigue issue recently and suggested the thyroid/hormone approach to the problem. The doctor diverted me to another approach: methylation support. Almost a week ago Steve began intramuscular injections of B12 + methyl folate + P5P (a highly bioavailable form of B6), plus Methyl Xcel by Neurobiologix and SAM-e. This has made a significant difference for Steve---more energy, better sleep, a higher level of consciousness and cognition. I could kick myself for not pressing the fatigue issue long ago.
Another important change I've made to Steve's regimen is the addition of systemic enzymes. These are proteolytic enzymes...specifically, he takes nattokinase, serrapeptase, and lumbrokinase. The purpose of Steve using these enzymes is to break down biofilms, the self-secreted slime blobs that bacteria protect themselves with against antibiotics and other threats. The point is that using these enzymes helps the antibiotics effectively reach a greater number of their target pathogens. These enzymes are murder on viruses too. Since Steve started using these enzymes, his hands and nether regions have warmed up to normal.
Steve's MRI's show that there are no new lesions since before he started the antibiotic protocol. He has not lost any ground function-wise, and he is in much better condition all the way around. He's still able to work, he tolerates the heat better, no longer foggy, and his balance is getting closer to normal as time goes by. I figure he will need at least one more year of full-time antibiotics before he switches to intermittent therapy. I'm very curious to see over time how much of his neurological damage is reversible, and how much is permanent. _________________ Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
I live in the DFW area and was newly diagnosed with RRMS back in February this year. I'm looking into support groups in the area and was curious if you and your husband belonged to any or could recommend one.
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