April 27, 2017 at 7:02 am #458714
After years of pretty decent remission, I have relapsed again. Fortunately thanks to a VERY expensive test, they found the culprit and the cure for it is Clindamycin. It seems that all of the current IV protocols are a bit different from what Dr S did for me. I cannot find his particular protocol anywhere! Seems to me it was 600 mg 2x per day for the 5 days. He did not start me at the 300 and work up like most of the current protocols I am seeing. The one that Dr S did for me worked and I just wish I could remember exactly what it was. Did anyone here go to Ida Grove and get the IVs? Would appreciate any jogging of my memory, thanks!!April 27, 2017 at 7:09 am #458720lynnie_sydneyParticipant
Sorry to hear that you relapsed again, but good to know that you have identified the culprit.
This is an extract from the original Pulsed Protocol (link to where this is on the site is below the quote) and it seems that 300mg was the starting point. Dr S, of course, may have devised his own – and possibly one of his former patients will see your post and confirm what his was.
Patients with severe or long-standing disease are started with a series of daily intravenous or intramuscular antibiotic treatments for a period ranging from one to three weeks. Clindamycin is given to eradicate long-standing L forms of bacteria resident in the gut, respiratory tract, genito-urinary tract and other areas to allow greater permeability of the tetracycline family of antibiotics and diminish the variables of disease. Clindamycin is concentrated in the phagosomes of the neutrophils, and therefore accumulates at the site of inflammation.
Clindamycin IM – 300 mg. clindamycin can be administered intramuscularly (IM) once daily for one to two weeks followed by 300 mg. weekly, monthly or at 6 week intervals as needed and tolerated by the patient. Because it remains in the tissues longer, a lower dose is effective.
Clindamycin IV – The IVs should be started at a low dose (300 mg) and gradually increased as needed to avoid the development of resistance in the bacterial L-forms that might be present. If this resistance develops, the patient will not respond as well to the antibiotic therapy.
IV therapy is begun gradually at 300 mg. given in 250 cc 5% dextrose solution administered by IV drip over a 45 minute period for the first two days. The next two days, the dose is increased to 600 mg. and finally to 900 mg on subsequent days if no adverse reaction is observed.
IV or IM therapy with clindamycin is continued at spaced intervals according to the patient’s need. It can be given once weekly or twice a month, again titrated to patient need. If weekly or monthly IVs are not possible for the patient, then a series can be administered at more widely spaced intervals such as every six months and later on an annual basis until the laboratory values return to normal.
Oral Clindamycin – Some physicians have had success using clindamycin orally (i.e. 1200 mg.) in a single weekly dose instead of in IV or IM.
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)April 27, 2017 at 10:31 am #458723
Hi Lynnie and thanks for the response! Yes, what you showed above was what I had found and no, that is not Dr S’s protocol. First, he did 2 x per day and he just started at the full dosage. This protocol above seems to be once a day, if I am reading it correctly. And it never even says for how many days.
I cannot believe I do not have this info in my paperwork anywhere. Well, I am sure I do, but I cannot FIND it anywhere, lol. It may have gotten lost during our move.
Yes, hopefully someone who went to see Dr S will see this and remind me of the dosage he used. I still feel it was 600mg 2 x per day but I certainly want to be certain. I have a cooperating doctor, but AP isn’t his specialty so I have to make sure I have it right.
Thanks againApril 27, 2017 at 11:08 am #458724MazKeymaster
On the old RBF website, there was an article submitted by Dr. S, called “One Physician’s Experience.” I can send you a copy of the full article if you’d like, but this is the specific info that Dr. S. outlines for his IV protocol.
Criteria for IV Use
The criteria I use to determine need for IVs is the same that rheumatologists use to determine efficacy of DMARDs like gold, methotrexate, prednisone or d-penicillamine. If they are ill enough to warrant DMARD use, they are ill enough for IVs. If the patient has multiple joint pain and/or swelling, and consistently abnormal labs such as SED rate, RF, CBC, I feel IVs will be beneficial. I also do a mycoplasma complement fixation test (MCF) which fortifies me in my treatment decision. I find, however, that the results of these tests are not predictors of patient response to this treatment.
I followed Dr. Brown’s IV protocol of 5 days of IV clindamycin, 300 mg, 600 mg, 900 mg., and am currently using up to 900 mg IV clindamycin twice a day for 5-7 days. depending on the length of time the patient can stay as well as their ability to afford the therapy and the severity of their disease.
I take this description to mean that Dr. S. followed Dr. Brown’s protocol originally, but that he started to modify it, because he founds patients tolerated IV clindamycin very well and that he may have switched up his IV protocol to fit a patient’s needs in terms of disease severity, how long they could stay in Ida Grove, and affordability for the patient.
So, Lyn is right that Dr. S. originally used Dr. Brown’s method (as he says above), which was tailored to in-patients at the hospital at which Brown worked. More recently, however, as people are flying to Ida Grove to see Dr. S. and staying in a hotel (on out-patient basis), costs for flight and accommodations can rack things up for the patient, so I think it’s safe to assume that Dr. S. has and will modify the protocol to fit each individual’s needs. So, as you recall twice daily IVs at the full dose, this fits with what Dr. S. is saying above, too.
When my doc called Dr. S. to check on doses/frequency of IVs, he recommended that I do 5 days of 900mg twice daily IVs, with weekly IVs on one day for the remaining 3 weeks of the month. I did this for nearly a year, without any hiccups and tolerated this more aggressive approach all very well.
Jaxtee, would you be kind enough to share the contact info of your “cooperating” doctor, if you think he/she would be open to the foundation adding their name to the AP Provider list? I’ll drop you a PM so it’s easy for you to find me and reply. Thanks!May 1, 2017 at 3:07 pm #458830
Hi Maz and thank you for the response. Sorry it took me so long to reply, I have had a rough several days.
I agree with your assessment that Dr S. changed his protocol over the years, I am sure he even told me that. I am trying to wrap my head around the 900mg twice a day. That sounds higher than I remember. I am seeing my doctor in about 3 weeks and if he approves me going back on them, I am just going to have to hope that my old home health care agency still has the records that shows the amount I took. I have torn through all of my paperwork and have come up with NOTHING that shows what I used to take. Which is shocking to me, but true. I even have all my old emails from back then and apparently I never even mentioned the dosage when talking with my friends and family via email.
As for my doctor being on your list, no, he would not want that. Of all of his patients, I am the only one that has ever done AP therapy. One other patient tried it with no success. I know the only reason he has stuck with me on this is because I have been fortunate enough to be able to prove I have these infections. He has gotten way into the biologics, but being as I refuse them and have the infections, I have managed to keep him believing that, in my case, it is the infections. Unfortunately he would never agree that all auto immune is from infections.
And I do not even know if he will approve me going back on the Clindy yet, I am just hoping!
In case this applies to anyone here or helps someone, they found my infections this time through a Vaginal One Swab test. It was expensive as heck. They actually culture the swab for something like two weeks, instead of the typical way they do it overnight or a few days. And I am/was having symptoms to warrant it, so it sure isn’t a guarantee they would find a person’s infections that way. But for anyone who might be having GYN issues and still trying to find their particular infection, maybe it could help. So just thought I would mention that.May 1, 2017 at 3:35 pm #458831MazKeymaster
The info you mentioned re: how you revealed which infection may be a root cause for you could very well help others! Thank you for sharing this and understand about your doctor, too. It’s a shame, but am very glad you have a doc willing to help you. Perhaps your tenacity to work with your doc will inspire others to do the same.
If you want a copy of the Dr. S. article outlining his IV protocol, happy to send it via PM.May 1, 2017 at 4:57 pm #458832
Yes please, do send me his article, I would appreciate it.
And I do hope my little bit of info might help someone in the future!
One thing that AP takes is tenacity! Trying to work with your doctor, being willing to not have instant results. My doc told me early on that it was one of the reasons he never really went down the infectious route was because patients want an immediate easy fix. And we all know that AP is not that!May 5, 2017 at 11:06 pm #458928sunny22Participant
I was a patient of Dr. S’s. Each time I went to Ida, it was 900mg, 2xs a day for 5 days. One friend of mine who is a patient of his is now doing 1200, once a day for 5 days(he mails them to her). He wont do that high dose with everyone but she has been consisted w him and she wanted to try this dose for the convenience. It has worked for her. He said he would mail them to me this year but I havent rcvd them. I tried to again and was told yes but I have been waiting 3 months. I think he is transitioning his work to someone else. It would be nice to find a doc to do this that would be closer. Good luck!May 10, 2017 at 2:13 pm #458964
Thank you Sunny, for confirming that.
I have found out that the mycoplasma infection I have is resistant to Clindy. Resistant to pretty much everything. The better news is that the infection that really makes me feel sick is the Klebsiella. It’s pretty much impossible to get rid of completely but if I can keep it a bay, I feel sort of ok.May 29, 2017 at 5:24 pm #459208sunny22Participant
So sorry to hear that Jaxtee! I haven’t heard of Kliebsiella. I looked it up. I do hope something will come up that will attack that bacteria!! Sending you the best. Sunny
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