posted
Thanks so much for the quick replies! I've heard so much about Dr. Nicolson but hadn't found that site before...thanks Keebler. Posts: 95 | From Maryland | Registered: Sep 2009
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Rifampin works on HME and Bart and also can hit Lyme. Many LLMD's combine it with another abx because the bacteria supposidly becomes resistant quickly. My LLMd won't combine because he said combining it is too liver toxic.
Doxy also will hit all 3. A link below will help out.
posted
Thanks Lymebytes. Very helpful. I've looked into Rifampin and my LLMD will use it if I want to - but I have Addison's disease and Rifampin is risky. We could adjust my steroid/thyroid meds but I'm not sure if I'm brave enough to mess with that stuff.
Luckily I'll be switching to IV Doxy next week (from Rocephin) and I'm really hopeful about that change. I'm thinking of giving the Doxy some good time, then adding Zithro, then Plaquenil.
And only if we need it after all that...stopping the Doxy and trying Rifampin.
But I'm glad you mentioned the liver issues - this is definitely worth considering as well. Already having lots of pain and apparently my liver is enlarged (but enzymes are still normal).
Thanks for the link and your help!
Posts: 95 | From Maryland | Registered: Sep 2009
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
how do you know your symptoms are from mycoplasma?
Posts: 3528 | From US | Registered: Apr 2007
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
hi pas - I posted a thread yesterday trying to find an way to lower my myco load (526 as of labs last weed) instead of more abx. First doc wanted me to do doxy for a month and I countered with mino. If load still isn't reduced, they rotate the abx because as the poster said, they become resistant very quickly. I'm pretty sure mine were elevated from the stay in the hospital in Oct 09.
What is your myco reading?
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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Good question! I don't know for sure of course, but this all started a few years ago with a series of infections. First I was bitten by 2 stray cats and the infections spread to my blood and joints. Then I was scratched by many more dogs and cats, most of whom were infested with ticks and fleas.
Bartonella was confirmed at the time but I was only put on 2 weeks of Doxy (I didn't know any better then). Tested positive on ELISA for Lyme and had a migrating band on traditional Western Blots...didn't think anything of it.
But then - this was the whopper - I went to get a tattoo (stupid me, I know) and the tattoo artist was horribly sick. He had a fever and productive cough.
He coughed right into my open wound (tattoo) and within a day I had a streaking blood infection. Within a week I had the worst URI of my life, high fever with rigors, the works...was told I had "walking pneumonia" and given 2 more weeks of Doxy.
Within a month I had systemic symptoms of mycoplasma (neuro, rashes, liver/spleen enlargement and cysts, etc...) Every time I went running I spiked a high fever and was bedridden for a week.
Then things just went completely downhill and I got all of these autoimmune diseases. Finally got tested for the infections recently and they all showed up as primary/reactivated. Probably b/c I've been on high steroid doses for the last year. Whoops.
So my CD4/CD8 ratio is really high which apparently is common with Sarcoidosis and other granulomatous diseases (and mycoplasma!). D1,25 is also high.
I have abnormal T-cell tests too which my hematologist says indicate a granulomatous/lymphoproliferative disease, cyclical increases and decreases in my monocytes/lymphocytes. My ACE is high sometimes. They thought I had Sarcoid for a while but then I wised-up and asked for the mycoplasma testing, and wham.
I have an erythema multiforme rash that is cyclical. And I have enlargement of my salivary glands. Apparently these things also happen with mycoplasma. I know a lot of this overlaps with Lyme and Co, but it's just my best guess based on my own history. Who knows!
I'm really interested in the work of Garth Nicolson and his antibiotic protocols make a lot of sense to me. I think the reason I felt so much better on Doxy than Rocephin is that it targets mycoplasma (and Bart and HME, which I also have).
Sorry to write so much!!! This is probably much more than you wanted to know...
Posts: 95 | From Maryland | Registered: Sep 2009
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I just saw your other post...looks like we're in the same boat!
My latest myco reading is 789 (range 0-99). It totally freaks me out.
Nicolson says 6 months minimum on abx for mycoplasma because it's so slow-growing.
I think I'm going to try Doxy, then add Zithro, then Plaquenil. That combo should hit the myco, HME, 3 forms of Lyme, and maybe the Bart. If I'm still symptomatic of Bart after that I'll try Rifampin.
This is all dependent on my LLMD, of course! Will you keep us posted on what you decide to do for your myco?
Posts: 95 | From Maryland | Registered: Sep 2009
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Wow pas, sounds like you're really going thru it. My reading is a mere 526, comparitively speaking.
I really don't want to go back on abx for this, as my Lyme is not active and since I think I acquired this infection in the hospital (when they kept me there too long), want to see if PSP (A.I.) will help.
Don't get me wrong, I'm picking up the script for Mino, just going to consider it a bit more before doing anything.
The Bart sounds very problematic for you; it's about the only thing I didn't have when I was first diagnosed. (Take that back, I didn't have RMSP either.) When my LLMD thought I might have it and the test wasn't showing it, he gave me Rifampin with a Cipro push. OUCH! Turns out the Rifampin wasn't my problem, but the Cipro was.
Let me know how you're doing and thanks for answering!
P. S. BTW, I has Erythema Nodosum for about a year. I know the Mino was contributor to that, but I wonder if Myco also might have had an effect as well?
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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posted
Thanks for the info Ping. It's nice to be in good company!
You know, I took my myco result to an ID doc just for kicks and he said the titer level didn't matter...that it just shows previous exposure. Same thing with my HHV-6 level.
Not so, according to everything I've read and what it says right there beneath my LabCorp result - "4 fold increases are indicative of primary/reactivated infection". Hmm......
Thanks for sharing your Rifampin/Cipro experince. So do you mean you had a bad reaction to the Cipro?
I am honestly terrified of the Rifampin, because I have Addison's disease and Hashimoto's, for which I need steroids and thyroid hormone.
Rifampin increases liver clearance of these drugs and can cause real problems (crisis) for people with Addison's. So we'll have to see with that one...
I know myco can cause EM, but I don't know about EN.
ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Yeah, ID Ducks are real blah, blah about it...unless it's them, then I bet that changes in a hurry.
Oh yes, the Cipro (& Levaquin & Plaquenil) all got me with severe joint sx's, rash, SOB - a true allergic reaction! I take thyroid meds too and didn't know about the Rifampin accelerated clearance. Guess it's different with Hashimoto's, etc. Never had a prob with it, but doesn't mean you won't.
My PCP/Lyme Friendly doc's nurse, who has about as much sense as a box of rocks, says my thyroid readings were high and asked me if I was taking thyroid meds! (Well Yah!) I asked her if it was a T3 or T4 reading that was high and she didn't know the difference... Needless to say, I'm waiting to get my hands on the actual tests themselves.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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posted
Yup, I think part of the problem is that a lot of these guys have never really been sick. Just can't relate to what it's like. What do they do all day??
I opted out of the Levaquin a while back...too scared of the tendonitis issue. Sounds like you had a really hard time with it and the others. Sorry to hear that.
Before all this stuff started I was an endurance runner and I'd really like to get back to it (or something resembling exercise, haha!) one day...no tendonitis!
I think the thyroid stuff probably wouldn't become symptomatic until 4-6 weeks after starting the Rifampin, since it takes that long for blood levels of TSH to change (T4/T3 can change as quickly as 2 weeks later).
I wonder if your TSH went up from the Rifampin, and that's what the box-o-rocks was seeing? I insist on FREE T3/T4 these days. TSH is so finicky and total T4 is only reflective of symptoms in some people...
The worst case would be feeling more hypothyroid on Rifampin. So I'm willing to deal with that, wouldn't make any sudden changes in the thyroid meds. But the steroid issue is of real concern.
Thanks again Ping!!
Posts: 95 | From Maryland | Registered: Sep 2009
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