I haven't been here for awhile, and don't worry its not a spam post. Just going to tell the story and what worked. Was reminded of the site when someone posted your link on another site I visit and thought you might find the story useful. Its a standard treatment.
The disease started at the beginning of 2000. Severe joint pain, resp. and conjunctive eye infection. As well as the low grade fever and constant malaise.
Kept it in check with doxyi cycling therapy. Taking it for a few weeks and stopping till I needed it again. Other treatments included four months of cipro, or ofloxacin. Tried two weeks of two grams a day ceftriaxone injections on several occasions to knock it back for a month or two. Hospital with vanco injections etc. Plus all the others you have on your check list, flagyli, etc, etc....
The last two years I had to quit work and was bed ridden most of the time. Still cycling vibramycin to keep it in check but the infection was getting worse. By now I'm 40k down and hospitals are getting wary of my “illness”.
I was on doxy tablets as the capsules wear me down quick. The tablets are easy on the body and I don't notice them in the stomach. So I started taking everything again plus cef. injs. and a doctor in a small hospital says lets try levofloxacin. He gives me a weeks worth. 500Mg in the morning plus the doxy.
It starts working on the joints immediately. It was actually painful to take, made me a bit woozy. After five days the disease and I came to blows with it. It didn't like the levo. At about 3am I started shaking and was headed for the hospital thinking I was having an allergic reaction. I could feel the whole infection fighting against the medicine. Then all of a sudden the whole organism gave up and I guess died. After that the medicine had no effect. Like taking a sugar pill. Of course I bought more and took it for another week.
The infection was in the brain, brain stem, spine, and joints. Mostly on the leftside. I could feel exactly where the infection was that night. Its like a huge large infection that works as one. Bizarre right?
After that it took about a week of sleep to get some rest. Then about two months before I could really start exercising hard again. But now I feel great. Working and a normal life. The last treatment was in Jan. and I hope never to take another antibiotic again.
I was researching my next steps last year as I was desperate. My next steps were thymosin, organic germanium (reishi), hgh, melittin, testosterone, steroids, adhd drugs etc. You can see the desperation.
I hope this helps. I thought how it finally died was important to chronicle and to let you know there is hope. I'll put this topic on notification and check it but I think the story is complete and the protocol understandable.
GLTA
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Cured Jan 2009. Began beginning 2000.
As I was told, you can't be
As I was told, you can't be sure it's gone unless you have a test that says the titers are down ~ what organism were you dealing with, anyway? You know..this stuff is cyclical. I wish I had a dollar for each time (over decades) I *thought* it was gone, only to have it rear its head again a few months later.
Good luck,
Diana
Thanks for posting this. My
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CAPi since 11/06 for Cpni, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infectionsi. Rifampin 600mg daily, Zithromax 500mg daily. NACi 2250mg daily. All other supplementsi. Now Bicillin LA 2.4 mil injection weekly.
What are the magnesium
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GFAi -
asthmai, sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started abxi 1/9/08. Azi 250mg/day, doxyi, tinii, 5,000iu vitD, rhodiola, SAM-ekevinsan, so glad that you
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zero negative sjogren's diagnosed 2/03, 200mg minocin daily, 500 zithromax mwf,flagyli 1000 mwf, chloestryramine 2x daily, caffeine.
PCRi can be neutralized by
PCRi can be neutralized by abxi if you are talking about a pos/neg result.
All I know is that Dr. S told me I needed to be tested to be sure my Cpni infection was gone and that if my IgGi titers ever go above 1:64, I will need to get back on the protocol..as it stands now, mine is at 1:16.
I am all for people who get well doing whatever it takes to get to that place. But - I understand that this forum is mainly for Cpn discusssion and those without a Cpn dxi or those not on the protocolsi developed by the hard working doctors and researchers are not always honored.
Diana
You know...I've been
You know...I've been thinking about "doing all tnhe abxi without any reactions" being a test of whether you're clear of Cpni or not. I guess it is for many. For me, not. Since, while on the Stratton protocol, I rarely had any reactions to any of the abxi, I had no way of knowing whether I was clear or not. I went by how I felt, my energy level, my lack of symptoms, etc. I can only really remember a very few - maybe 5 or 6 times I had any reactions at all to the abx - the first a nd worst was when I began the 500mg zithromax three times a week..and I always said that my progress was felt by getting better and better. I attribute my lack of herxing to the charcoal I took and the B12 shots to mediate secondary porphyriai.
I never felt worse after I began the meds than I had so often felt letting the Cpn have its way with me. Which is probably why I am kind of surprised when people are unhappy that they are not reacting or herxing while on the meds. To me, that seems like a good thing, albeit maybe not a clear sign that the meds are doing "something". But I believe that Dr. Stratton tried to find ways we could keep the effects of herxing to a minimum while they were doing their work.
Diana
So if I decide to go n a
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Fibro, CFSi, Myco, CPNi, Stratton protocol, Zithro 500mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli and INHi 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day, Still cant shake it but improving.
Hey Guys & Gals, I just
Hey Guys & Gals, I just wanted to shared my experience. The medicines remain the same but the ending was different and very unique. To me the organism it felt as if it acts as one. If you do not kill it you are just knocking it into remission. I could feel the infection die and exactly where I was infected. After that clear as a sunny day. No problems since. Trust me its a miracle. Let me clarify one thing. When I say the levo hurt, it hurt in a good way. I could actually feel it attacking the disease in the joints.
As far as azithromycin, of course I was on that. It just stopped being effective a long time ago. Thats when things became bad for me as there was no blast off treatment. Those six little pills to start the regimen. And then every three days. So I was also on that two weeks before but it had long lost its effectiveness. And thats why I had to go to the doctor and beg for help again.
The only other recomendation that I do not see on the board is thymosin and melittin. I'm in Asia and thymosin is available if you look hard. You can buy it from Sciclone in Singapore as injection, and from Falama Biotech as a sublingual spray. I tried some and its not your regular vitamin supplement. (I got some from a friend who has Hep B). The literature states that it matures T-Cells. Something like after 20 your ability to make thymosin declines and by supplementing you can help mature t-cells again. Sciclone is studying it as a preventative vaccine against all viruses. Clinical trials. I took the spray and it definately makes your immunei system stronger. You will feel it working the first day but after three days you will feel extremely healthy. The bottle lasted me about two and a half weeks. I didn't actually need it but I has read about it over the years and wanted to try it. I would recommend it for fighting any illness not just the fatigue.
The melittin I haven't tried but would like to. I haven't looked into it for awhile but have read all the pubmed abstracts and work done in China and Korea. They seem to be at the forefront as far as this research goes. Basically melittin is the active component in bee venom. I think apitherapists use it to treat MS. and RA patients. But newer research shows it anti-microbial ability:
"In view of growing number of pathogenic microbial strain resistant to routine antibioticsi, antimicrobial peptides become promising agents for the therapy of infectious diseasesi. We studied in vivo effects of melittin, an antimicrobial peptide expressed in a recombinant plasmid vector, on infection with urogenital pathogens Chlamydia trachomatis, Mycoplasma hominis, and Mycoplasma gallisepticum."Thats all folks. I wish you luck. Again, I just wanted you to know there is hope. I'll try checking back one more time. But I don't think there is much more I can offer.
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Cured Jan 2009. Began beginning 2000.
What are the magnesium shots
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GFAi -
asthmai, sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started abxi 1/9/08. Azi 250mg/day, doxyi, tinii, 5,000iu vitD, rhodiola, SAM-eThe quinolone molecule
The quinolone molecule blocks absorption of magnesium....
Also:
This explanation may tell part of the reason why it's so hard on connective tissue:
Cipro raises the MMPs (collagen eating enzymes),
Adding on, Cipro also raises elastase (elastin eating enzyme), about double:
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1196266
All this may be part of how Cipro works to resolve a bacterial infection and cart away the resulting debris, remodel the tissues more rapidly than usual. But that could have side effects in areas of the body that get more weight and other mechanical stress put on them.
I figure Levaquin and quinolones in general work in a similar fashion. These are just things you need to be aware of when taking quinolones long term.
Diana
Kevin, It is so difficult to
Kevin, It is so difficult to draw conclusions. I took Zadaxin for 6 months - a synthetic thymus hormone injected product. It did NOTHING for me except cost me a lot of money. I did 2 months of Levaquin and Avelox. They did a lot - totally destroyed my tendons and caused CNSi problems like anxiety attacks but cured nothing. Go figure.
I think part of the problem we all have in treating is that we really have no clue what we are infected with. I am reasonably sure I have borrelia, 2 mycoplasmas, c. pneumonia and babesia. I shouldn't need a quinolone to treat any of these, and, indeed quinolones have not treated any of these. Zithromax helps but I relapse. I have done minocycline - probably enough to reduce the mycoplasma.
We are all in a mess. I am glad you are doing well. Please keep us posted. One more question - do you happen to know if you had bartonella?
Paula
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Paula Carnes
You are correct Paula.
You are correct Paula. Similar symptoms, different diseasesi. The quinolone is difficult to take. A three or four month run of ofloxacin is difficult on the mind and body. I needed valium some evenings to get some sleep. It really wears you out. Thats why I was reluctant to take the levo. But I'm glad I did. There is a molecule out there for everyone. As far as the thymosin, if you do not feel it after the second shot, there is no need to take it. I think we had some type of Asian Lyme disease. Seems like I contracted while running a business in Siem Reap after a big flood. I had cycled in and out of the malaise before but never as severe. I could always exercise my way out. After the flood in 2000 it became very severe with an extreme amplification of symptoms. Arthritis, delirium, malaise, aghhh and more.
Good bye all. I'm going surfing.
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Cured Jan 2009. Began beginning 2000.
Kevin, That sounds SO good!
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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
MacKintosh, you never shared
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6-07WheldonCAP CPnBb FMSi-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxini
3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU
2-09Intermit-CAPDoxi
RoxiClari,Tinii, 2-09LDN-CFS1-10-IT+Ursodiol300Bid+Lauricidin