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My initial intention was to use AP in conjunction with an Immunosuppressant (Cellcept) as Brown stated that was possible initially with a gradual weaning off of the Immunosuppressant (Cellcept) as the AP was better able to control the disease. Unfortunately Cellcept seems to be an exception to this since it depends on gut bacteria to properly function which rules out the use of antibiotics, though some rheumatologists think nothing of using antibiotics cycles when needed without adjustments in Cellcept dosing. Anyway, unexpectedly a health issue arose and I was hospitalized for week or so. As part of this I was given a constant infusion of an IV Penicillin class drug, ZOSYN, to prevent infection. My reaction to this drug was very unusual and mixed. At first nothing but in a day or so my existing autoimmune symptoms became much worse, increased pain and swelling, but over the next week my symptoms gradually diminished until by the time of my realease I was feeling much better, more so than I have felt in quite a while. My usual Sjogren’s and Sclero symptoms were almost entirely gone. When I was released I was put on Augmentin as my sole med to continue until I was given clearance as subsequent followups. So far it has been 2 weeks since release and I am feeling really good. I had my first followup a week ago and was found to be doing well, with another exam coming up next week. Not sure when they will stop prescribing the Augmentin, but when they do I am inclined to continue taking it as my AP drug. I rarely see this being used in members signature, mostly the tetracyclines and macrolides. In fact the only person who lists it is lynnie_sydney. Is there a reason for this? Are there issues with using penicillin class drugs for AP use? I mostly see Penicillins being used in Lyme cases. Thanks in advance for any info or theories.
Liz
Augmentin is extremely strong and over a period of time will most likely affect your stomach –that is why they usually give 10 day rxs –hope you are taking lots of probiotic –IN DR Browns day -were there immunosuppressants ???? Not too sure —The latest so called answer to SD is cellcept –I have heard nothing good about this in the treatment of scleroderma –I have heard plenty about eye issues with cellcept –destroys corneas !!!!
Thank you Richie for your evaluation of the use of Augmentin for AP. I cannot speak for anyone else’s experience of Cellcept besides my own. First, I would not want to be on any of the immune suppressant drugs long term, since eventually it will catch up with you and the liklihood of cancer increases over time. I stayed on it only a short while, during that time it helped my pulmonary issues very much, once that happened I went off it due to my hospitalization, though I would have done the same even if those issues had not occured. As far as immune suppressant go, it is number one for pulmonary issues, even better than cytoxan which is about as toxic as they come. On the subject of probiotics I agree with you 100%, currently taking about 150 billion cFU of assorted strains, most of which actually colonize and multiple in the gut, so they will stick around much longer despite being hit by the antibiotics so often. Hopefully this combo will keep my gut in good shape through all the warfare going on down there.
Liz
Hi Liz,
If you have a copy of The New Arthritis Breakthrough, by Henry Scammell, you’ll find info where Dr. Brown commonly used penicillins for rheumatics with a history of strep. Penicillins are different in their actions to tetracyclines. Tetras are “bacteriostatic,” meaning they function primarily on cell wall deficient (CWD) microbes, like mycoplasma, by penetrating their outer lipid layer to disable the bug’s reproductive and life cycle, to slow them down. In lower doses, they do not kill the microbes, just disable them, and require a functioning immune system in order for the disabled bugs to be cleaned up. Penicillins, on the other hand, are bacteriocidal, and function by killing cell-walled microbes outright by harming their cell walls. They would be used for bugs, like strep and for the cell-walled spiral forms of Lyme disease. I also took a long-acting penicillin (Moxatag) for about 10 months along with an antifungal med, called Diflucan, as a specific Lyme protocol. During this time my anti-CCP, which was highly elevated, began to come down by an amazing 40 points per month to near normal levels. It was quite astonishing. Like you, I also experienced a significant herx response about 3 days into this protocol, which, in my case, lasted for a number of weeks.
Some experienced AP docs and most LLMDs aren’t afraid of doing a bit of “therapeutic probing.” In other words, if one abx protocol doesn’t’ work, they will try other classes of abx in various combinations to see what helps a patient. In your case, you had a kind of “blessing in disguise” in that you were able to discern that a penicillin was helping you when being treated for an infection in hospital. Quite often, people find AP synchronously in this way (see newcomer’s post – Jaime) – when all other meds fail them, a simple abx brings relief and the connection is made.
Was the hospital able to decipher what type of bug you were dealing with? This may help to provide clues as to which road to take with your AP. Although minocycline is the staple for SD and penicillins don’t usually get prescribed (for acute infections) alongside tetracyclines as one diminishes the effect of the other, Dr. Brown would pulse dose the two (e.g. every other day dosing or spreading doses well apart) so that patients could benefit from the actions of both. Alternatively, a compatible bacteriocidal abx can be prescribed alongside the minocycline/doxycycline, such as a macrolide (azithromycin or clarithromycin).
Although penicillins for use in SD aren’t correlated with any great frequency in the medical literature, we have had anecdotal reports of children with linear SD doing very well on penicillin (as they can’t use tetras). Interestingly, too, Lyme has been associated with linear and other forms of SD in the scientific literature, so it makes sense that a penicillin might help folks with cell-walled microbes, similar to Lyme.
Sounds like you might be onto to an important piece of your puzzle here! Let us know how you decide to proceed and how you do, Liz. Wishing you the best!
Maz and Richie,
THank you for all the info and advice. The issue I had was a colon perforation, probably caused by Prednisone they think. I may have had somewhat of an infection, but it had not progressed much since the blood work was not too bad. They opted to hit it hard with the ZOSYN to prevent the possiblity of sepsis. I had already tried Minocycline and even Clarithromycin on my own previously, but they did not have anything like the reaction or effect I did with their drug. One crazy thing happened, my skin suddenly became very oily. I used to have oily skin, sometimes very oily before these illneses, but then it dried up, but when they admistered ZOSYN the floodgates opened! One of the nurses asked if I was sweating. I kept going to the bathroom to wash my face several times a day to wipe the excess oil. Also at one point my fingers were as swollen as sausages, but by the time I left they had normalized and are still so. I am sure the Augmentin is not as potent as the ZOSYN, but so far seems to be containing whatever it is that caused my issues and I would hate to stop using it and let the beast out again since I might not be able to rein it back in with the Augmentin alone, quite a dilemma. I have taken the precaution and ordered some stock of Augmentin online should they decide to not continue my scripts. Never expected something like this to happen, must be a potent bugger that is roaming inside me waiting to get loose again. LOL!
Liz
Does anyone know what brand of tetracycline Dr Brown used in his protocol? Whatever he used seems to have worked pretty well and with the problem of not being able to get brand name Minocin these days, I was curious if it was ever mentioned anywhere in the literature if he preferred a particular brand or manufacturer.
Post script – I was on mino and clindo for last 7 years – first time in Iowa (DR SS) for iv clindo was 2010.
I am on bactrum and pen as I currently only have morgellon symptoms. My PA – RA – scleroderma are in remission – in search of fellow morgellon people at RBF. It appears to me that was every deep inside me is now coming out… if you look up palladromic arthritis, my first diagnosis, and morgellon’s – my last digsnosis with RA, fibro amd sceloderma in the middle – it almost spells it out… common sense – the loner I stayed on abx the closer to the surface of my skin the infection appeared. They say alcohol is cunning and baffling – I use to say AI is a enigma wrapped in an oxy moron – no longer – it makes complete sense to me now… I know how I got, where I got, why I got it, why I couldn’t keep it gone and I now have a plan to keep it gone for good or at least manage!
God is Good!
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