Quote:
Originally Posted by KateTheRiot
Well, if you've "been together" any time since you've had Lyme, she is probably infected and should be tested.
However, back to my original question: What have you done to obtain a cure? What protocols, abx, etc?
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We've practiced safe sex, but it's theoretically possible to transmit via saliva. But she shows no symptoms and we've had some very serious stress in the family this last year (father dies from melanoma, I get foot surgery due to abnormal mole - thankfully caught it before it turned into melanoma, which is where it was headed to in a couple-3 months, some legal issues, and my being sick/unemployed) that if she was infected it would have had a field day. She got run down and stressed enough that it's doubtful it would have remained in hiding. But we plan to have her tested just in case before we start that family, to be sure.
I've posted the regimen elsewhere, but I'll give you a rundown:
Initially treated twice with the standard treatment (200mg Doxycycline for 21 days). Showed some improvement, but still ill. Couldn't find a doc who knew anything about Lymes, so I lingered for the next 2 years +. I'd feel maybe 75% for awhile, then get tired/stressed and the Lymes would relapse with a vengeance.
Got to the point where I couldn't work anymore. I finally found a local doc who knew how to handle Lymes. He put me on 400mg Doxycycline daily for 28 days with 5 days Tindamax in between each 28-day cycle of Doxy. I was supposed to repeat this cycle at least 3 times. However he closed his practice and moved.
I had shown major improvement by the second month of this regimen, but had to stop due to hundreds of red spots appearing on my body. My dermatologist thought this might be Lecoclastic Vasculitis and ordered up a bunch of tests (all of which came up negative fortunately, as some of the possible causes were pretty awful).
Right after this, I discovered my current LLMD and he had me stop all antibiotics for a month to allow my immune system to calm down. After that, he started me on low dose Benicar (slowly ramped up from 5mg a day to 3 x 10mg a day which is my current maintenance dose).
The Benicar is interesting because it reduces tissue inflammation and counteracts some of the side effects of the Lyme spirochetes dying off. He also thinks that the spirochetes create inflammation to hide from not only the immune system but antibiotics as well. The Benicar reduces the inflammation, allowing the spirochetes to be more easily killed.
The red spots had gone away by the end of the 1 month "rest period", but my symptoms were starting to return. He put me on the Benicar and poof, I started to have a few spots, but only a few. He is theorizing that the Benicar may be having some sort of effect on the spirochetes in of itself. But there is no real proof of this.
After a little while of Benicar only, he started me up on 100mg Minocycline, this being a antibiotic he likes to use. I had an immediate reappearance of the spots in large numbers (in only 2 days!). So at this point he's thinking I'm having an allergic reaction to the Tetracycline drug family. But it still could be a massive spirochete die-off and not a drug reaction. But he's inclined to be very conservative on putting me on any other Tetracycline family drugs if he doesn't have to. (each subsequent possible drug reaction tends to be much worse than the previous one, to the point where they can become life-threatening).
He also runs a CD-57 test, and the results are just under normal range.
He puts me on
Cefzil (similar to Ceftin), and I start to show improvement. After a while he starts me up on Tindamax every other day to kill off the cyst form. He has me on every other day Tindamax and not every day because he doesn't want to stress my system too much, what with the spots and all.
He also tests me for Vitamin-D levels and finds they are very low. Apparently low levels of Vit-D are a clue of active Lymes, since the inflammation decreases Vit-D levels. Increasing the Vit-D levels seemed desireable, so he put me on Vit-D3 supplements. Incidentally, this is the first winter I've every had in my 41 years that I didn't get depressed due to the lack of sun, and I've been actively avoiding the sun due to a close call with skin cancer last year.
I continue to show improvement, with only a few spots, so he increases the Tindamax to every day, after which I have increased symtoms (reflecting increased die-off). I normally have an increase in symptoms about the 3rd week of the month (monthly 4 week growth cycle apparently, which is when the
Cefzil kills most of the spirochetes due to the way it works), but this is worse than usual. The Tindamax is doing it's job, killing the cyst form.
I'm currently on Benicar 3 x 10mg/day, 500mg
Cefzil 2x a day, Tindamax 500mg once a day, along with 2000 IU vitamin D3, and 6g fish oil/day.
After 3 months of treatment, I'm at 90-95% pretty much every day now, and while I still have some mild symptoms, things are moving right along. My LLMD thinks we may be able to stop treatment earlier than originally anticipated, though we have to see what the testing reveals.
He thinks that due to the inability to positively say one is cured, due to the inadequacies of current testing, that I may need to take certain supplements (notably some mushroom extracts to keep the immune system strong and the possible stray spirochetes in check) for a long time. It stinks not being able to say for sure I'm cured, but that's how it is.
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