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I read that no tetra’s on the same day as Bicilin – yet Dr C. wanted me to use Doxy concurrently so that is a bit confusing to mem unless doxy is not in the tetra class but I thought it was.
I found another doc’s article that said just dont use a tetra & bicillin on the same day together, but I wonder as Bicillin stays in the system for some time.
Of course with Christmas coming hard to get answers to this from the doc’s as it is a short week next week.
Jill SD, Lyme & CPn
Update –
Dr S in Iowa had me on zithromax 250 mg’s but it was not enuf for me due to the SD being in my digestion now so we upped that to 500 mg’s. In addition, he is also having me add in minocycline on the off days I am not on the Zithromax which I am on the Zith – MWF only. the other days i use the Minocin twice a day.
I do Penicillin IM 2.4 4 days apart twice a week also for Lyme so on those 2 days I dont take the mino this is from Dr C who treats Lyme, and I take Plaquenil twice a day every day to bust the cysts from the lyme & the penicllin is for the lyme.
Since upping the Zith which I tried to see if I could help my stomach – which it did, is what caused me to ask Dr S. if he would consider upping my prescript. he agreed that my SD was causing absorption issues.
Adding in the mino again I asked him about & he was fully supportive.Am doing a bit better since upping my game plan but have been really sick with a bad cold virus, son went home at Christmas & brought the bug back he was pretty sick but got over it it spread thru the house – I have had this now for 7 days & still no signs of it letting up – he had it for 3 days & hubby has it too – has me pretty punk & not been on the PC much.
Dr S. said in his opinion the IM Clindy does not work as well this is his note –
Hello Jill,
The Rx for zithromycin 500 has been phoned in, and yes I think you should re-consider minocycline. So take the minocycline on the days that you don’t take zithromycin.
Regarding IM Clindamycin, it has not proven to be effective, primarily in scleroderma again due to poor absorption. Again, IV Clindamycin is much more effective, and when used safely, bowel problems are limited. The IM is used only when IV and oral meds. are not available, that is, in my experience.
Sincerely,
Dr. SinnottI still cant find a doc in the south who will adminster IV’s for Clindy 🙁 Already hard enuf to pay out of pocket for IV so i cant add in airfare so has to be driveable.
I did ask Dr. S. if he felt if my insurance would pay anything for me to come up for a week of IV’s since the test didnt show for sure a mycoplasma. Am out of ideas. Dr F. would be even more costly to get too & if insur. wont pay anything for IVs I cant afford 3k for the one week of IVs from Horn Hospital. I always thought IM was better than oral but it maybe only for penicillin – I just know the ILADs doc’s including mine Dr C. largely felt pencillin IM was effective in killing spirochetes as long as you take a cyst buster which I am Plaquenil twice a day 200 mgs each time 7 days a week.
I will say Dr S. has continued to try to help for SD as has my doc here for lyme, Dr C.Jill SD, Lyme & CPn
Plaquenil BID 7 days 200 mgs, Zith 500 mg’s MWF, Mino other days but the 2 days I take Penicillin IM 2.4 twice a week. LDN 9.0 mg’s at nite nightly. Vit D3 10,000 IU daily, my blood shows I am still not high, Vit C 3 times a week 3,000 mg’s. Multi Vit daily, Boron 3mg’s daily, K2 daily, Serrapeptaise, Bolouke, & Enzymes daily along with Probiotic. 50 mg’s DHEA. Vit E & O3’s. Infrared Sauna Blanket & Zapper plus AlphaSonic are all external devices. No meat, but I eat wild caught salmon, mostly veggies no gluten nor wheat, white rice or white anything.Am confused as Dr. S. said he feels the IM Clindy is not well absorbed. I went to the net to search IM, oral or IV which is more effective for Clindamycin & lo & behold I found this from the Road Back as posted below.
My question is it does not mention who wrote this info – can any of the wonderful volunteers help me ? I think it would be helpful to know if it was a layperson or was this from a doc’s opinion? As it’s important. Tx
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.[/b
]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.- from – https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184
Dr S. said this about the IM Clindy – Regarding IM Clindamycin, it has not proven to be effective, primarily in scleroderma again due to poor absorption. Again, IV Clindamycin is much more effective, and when used safely, bowel problems are limited. The IM is used only when IV and oral meds. are not available, that is, in my experience.
Sincerely,
Dr. S
Am a bit confused was the info on the road back above written with SD in mind? Welcome input – tx – Jill SD, Lyme & CPn@cavalier wrote:
Am confused as Dr. S. said he feels the IM Clindy is not well absorbed. I went to the net to search IM, oral or IV which is more effective for Clindamycin & lo & behold I found this from the Road Back as posted below.
My question is it does not mention who wrote this info – can any of the wonderful volunteers help me ? I think it would be helpful to know if it was a layperson or was this from a doc’s opinion? As it’s important. Tx
Hi Jill,
Re: The material you mentioned above from the Historical Protocol on the main site:
I had wondered about the source of this material, as well, and did some checking around a couple years ago. I spoke by phone with Pat Ganger (a SD patient of Dr. Brown’s for many years), who co-founded Road Back. She told me that the Physician’s Packets were compiled after Dr. Brown’s passing by herself and other volunteers at that time, from transcripts of audio recordings of his lectures, published materials and also the additional references found at the foot of the Historical Protocol. Once the protocol was written, it was checked and edited for accuracy by Dr. Millie Coker-Vann who runs the labs at TARCI and who was a close research associate of Dr. Brown (see video documentary at the top of the forum to “meet” Dr. Coker-Vann). So, the materials had been validated by her in this respect. Near the bottom of the link, above the references and appendices, you will see that it was “Revised in May 1998,” but it does not state by whom or what section(s) were revised. I have not yet confirmed who made these revisions, but think this came after Pat Ganger’s time when others were heading up the foundation. Considering who these folks were, I feel certain that any edits would have been double-checked for accuracy. The Historical and Current Protocols were created and included in the “Physicians’ Packet,” specifically to help guide new physicians who needed a point of reference to begin treating their patients.
The foundation is in possession of all or most of Dr. Brown’s published works and these are currently being scanned for upload to the main site. This is a time-consuming and arduous exercise and the volunteers who are doing this are wonderful! As there is no fixed date for completion of this huge task (each page has to be scanned separately), I can’t tell you when these materials will be ready for upload and public consumption, but RBF’s plan is to make this vast wealth of material free for all once we get the website revamped.
Brown never wrote out a precise protocol for universal use, because he treated each patient individually and the so-called, “Harvard Protocol,” minocycline 100mg BID, aka “Current Protocol,” was the direct result of MIRA and the Minocycline in Early Diffuse Scleroderma trials, as headed up by Dr. T. in Boston. Other protocols have since been devised (though these aren’t limited to rheumatic diseases), such as the CPN Help Protocols (Sriram and Wheldon, for example), Marshall Protocol, ILADs Protocols, and the Arthritis Trust Wyburn-Blount/Mason Protocols, largely based upon the experiential success of these treating physician-researchers. Brown does, however, discuss basic starting protocols in the video documentary at the top of the discussion forum (end of video).
Probably the most interesting materials to actually see would have been Dr. Brown’s patient case files, but unfortunately, these have probably been cast to the four winds and today’s HIPPA rules might preclude their use anyway. I have been told by a few of his patients with whom I have spoken, however, that Brown used a variety of anti-microbials, sometimes in combination and in varying doses, by IV, IM and oral routes. The tetracyclines tended to be the “core therapy,” but he would often use other anti-microbials in combination with tetras or, according to Dr. Coker-Vann, with whom I have spoken on the phone, sometimes even just penicillin, depending upon a patient’s pathogen load and response to therapy.
It should probably be noted that the Historical Protocol is called “historical,” primarily because this was what was done in Dr. Brown’s day and largely that with which he found success in many patients. This is just a lay insight, but IM clindamycin is probably a “poor relative” substitute for IV clindamycin, because of its route of administration – into muscle – rather than directly into the vein which is more immediately systemic. In the case of SD patients, it may, in some cases, be hard to find a patch of muscle that isn’t affected by SD (as Dr. S. mentioned to you – poor absorption due to lack of circulation in those affected by thickened skin), just as it can be hard in some patients to find a vein. I can’t tell you whether or not it’s as effective as IV clindamycin, because it’s just not used as much as it may have been at one time. We rarely hear of anyone having direct joint shots either and my doc was actually against these as he felt it would create too much antigenic activity within the joint capsule. However, my doc was looking at it from the perspective of not mixing it with cortisone (contraindicated in Lyme), which is, if I’m recalling correctly, how Brown would do it.
Quite a bit has evolved since Brown’s day. Experienced doctors using Brown’s protocols initially, finding success with their patients, have evolved his protocols further, incorporating their own experiential findings into his work. This is why each AP doctor will have their own mode of approach, adapting the protocols as they go to patient tolerance and with what they have found works or to their own leanings and preferences, including new types of anti-microbials that weren’t available in Brown’s day. Also, things like diet, detoxification and other supportive adjuncts. So, the Historical Protocol, while outlining how Brown would have done things, is really just a guideline or basic framework for how to approach the therapy and what to expect.
Dr. S’s insight about the inferior absorption of IM clindamycin is probably based upon his long experience in treating thousands of rheumatic patients, but as most folks travel to see him for the 5-day IV series these days, my guess is that he doesn’t have much use for the IM route of administration either. My best insight, Jill, as just a fellow patient, is that if IV clindamycin is not a possibility, then IM clindamycin is probably better tolerated than orals for long-term use as it bypasses the gut, although there have been folks here who have used the 1200mg once per week oral clindy protocol with success, too. Also, if your skin is not too affected by SD, then you may be just fine in terms of absorption. Like everything, it’s going to be an individual thing and one won’t know unless one tries a particular route and has a point of comparison. You’ve had IVs before, so I’m guessing you will know after a series of shots whether or not is as helpful for you. If not, it may be “back to the drawing board.”
The is about as much as I am able to share. Does that help, at all?
As always Maz your logical step by step does help to sort thru – the thought that Dr S. has no real experience with IM is a consideration and for sure he has a point for sure IV is ideal but finding it is about as easy as my finding a horse in my backyard.
I know the stomach is not going to absorb well a pill but it’s becoming a consideration for the Clindy. I am not sure that Zithromax is as ideal as the Clindy was. By mouth Dr. S. prefers zith prob. due to the concerns with the stomach.
I am going to see Dr C. tomm. he does not know that the new lab test at Vandy confirmed the SD was still active so will see what he has to suggest if he can. He knows Dr S.
I hope you are doing well TX!
Best – Jill SD Lyme & CPnDr C. checked me over yesterday my reason for going to him my lungs made them as a 1st priority. He listened to them and breathing in or out I couldn’t stop coughing he could hear my chest rattling & wheezing – said I am dangerously close to Pneumonia & i have asthma gave me 2 RX for brchodilatorss ventolin & Advair of course the pharmacy was out of Advair so will be coming in today. Ventolin is not helping & I had some Symbicort here which is sort of close to the Advair, but I was still up all nite could not breathe. Told me to take zithromax 500 mg’s but told him i already am. He is calling in a compound inhaler for me that is called Neublized Gluthathione & i was not aware this was a possibility & he said it’s so much more direct to the lungs so am grateful for that of course I have to wait for that to be made still.
Dr C. suggested for the 3rd time i contact a Dr Chi he is a Biomed Phd as well as a doc who has worked at Merck in their R&D he felt I should consult with him for more help with my lungs & for the SD. I have hated to spend more money chasing something as you often feel it is marginal but Dr C. believes in his work & so far Dr C. has been in my corner all of the way in trying to help so …
I contacted Dr Chi of Chi Enterprises – did the consult today as I am pretty sick. One thing was of interest he immediately said my having Lyme is what caused me to get the systemic Scleroderma. He is supportive of AP for treating & he knows Dr C. is doing that – he suggested I consider a product he makes called AutoSine Reduces the autoantibodies by regulating the immune wont interfere with AP and will help my immune system. I am a little leery as I have tried the peptides & it was not effective for me but I also have Lyme in the way which the peptides cant address so I can see where the lyme would get in the way. I am trying it for 3 wk’s if i dont see any improvement then that is the limit of my trial. He feels coupled with a couple of other things to help my lungs & heart from the SD is important & since this is Chinese herbs & I have a certain level of familarity will try it for the same 3 wks. One is Veinlite which is antifibrogen & helps to open the vascular which is very impeded right now. All I am trying to do is to help along with the AP. I see Dr C. in a few weeks & I decided to table the discussion of clindy IV’s til then I have 2 more weeks of Bicillin IM to use up & I will ask him if we should do a blood check to see how effective this AP regimine is on the Lyme.
If Dr C. is willing to write the script for Clindy IV then I could get the IV’s if not then somehow I will have to figure out how to get back to Iowa as there is no one else to get them & for sure my best response for the SD has been while on Clindy IV’s.
It would give me a few weeks to try to get strong enuf to travel if i have too and hopefully over this with my lungs & also have a few weeks of trialing Dr Chi’s formulas along with the AP to see how I am.Dr Chi mentioned a MIT lamp similar to the ones the accupuncturists use, but this has some minerals with the heat helps open the vascular & is important for my heart & lungs which he said are in a bad spot right now. I do agree with him they are pretty bad & conventional med’s have little to nothing to offer. He wants me to keep doing the Infra red Sauna blanket for detox. He feels I should see improvement in my breathing in 2 to 3 weeks time but said to expect it to take one to 2 years to reverse this he said it is still possible. He strongly felt that Lyme is the root of my issue & he said anyone who is clearing a virgin forest like i did is going to encounter some pretty virulent strains. Will see how much this helps over the next few weeks I hope it is more impressive than the peptides which tried but could not get past the lyme.
It’s not as expensive as the peptides, which is good. And is compatible with AP. On the 30th i will see Dr C. again as he has Weds & Fridays for more indepth issues. Something has to happen in giving me a break.Funny how some doc’s immediately say that Lyme caused SD & other doc’s cant see the association. Some docs don’t even see lyme as being real. Dr Chi said Lyme is very real.
Jill Systemic SD, Lyme & CPn
Jill – let’s hope Dr Chi proves to be a help to you. His attitude is certainly refreshing. Boy what an arduous road this is for you Jill. You are way overdue for a break, fingers crossed this turns out to be one for you. You are one amazingly persistent woman.
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)Thank you Lynnie – my lungs are really hard hit right now & so i feel pretty punk.
I should have listed what MIT stands for – Mineral Infrared Therapy Lamp. One would think a Infrared sauna would be enuf, but it’s the minerals this is supposed to release that makes this different.
Here’s a link the same lamp Dr Chi sells, but this place sells it at a much lower markup than he is presently- for 185 bucks for the stand up model I have to hope it is helpful if not can return it within 60 days minus shipping & 15%. I have no association. http://swordintheuncutstone.com/index1.html?c21.html&1 3 different MIT lamps, table top only 2 1/2 inches deep, but 2 standing both at 3 1/2 inches deep manual timer VS digital 180 bucks for the manual timer stand up & 5 bucks for shipping.I am posting as some folks were asking about lamps this is supposed to help circulation but also is antiviral bacterial is supposed to help kill & supposed to be antiaging as well.
Somehow I am going to have to get out of this hole.
Best – Jill SD, Lyme & CPn
The 2 1/2 inches VS 3 1/2 inches is the depth the bulb can penetrate – you can do both sides of the body in order to max the effectiveness of the MIT Lamp.
I hope it is worth this, if not it’s going back.
Jill SD, Lyme & CPn
Jill, just read your update above….really glad to hear that Dr. C. has got you on a Glutathihone nebulizer. This may be exactly what is needed to prevent and reverse further lung issues in addition to the zith. They are using the Glut Neb in addition to Adult Stem Cell therapy now for COPD and lung fibrosis. It’s a mucolytic, so don’t be surprised if it really causes you to cough up a lot of mucous…it’s just the body clearing out the muck. NAC can do the same, but the nebulized form of glutatione is more direct.
Sounds like the new doc is right on his game, along with Dr. C. I have no doubts that Lyme & Co are at the root of a lot SDers probs, but just my humble lay opinion. The correlation in numbers is staggering.
Hang in there…one thing at a time. So wish you could get back on the mino and IV clindy, though….so great for SDers.
Can you share more about the “AutoSine?” What exactly is it? Haven’t come across this before.
Hi Maz I am back on Mino. but only on some days – just only Thurs & then Sat which is not alot but Tues & Sun is when I am doing the Bicillin injections so i dont want to take Penicillin & Mino on the same days & MW & F I take 500 Mg’s of Zith.
AutoSin or however it is spelled is on Dr Chi’s site & the link I posted also has some info about it. It is supposed to stop the production of auto antibodies that folks who have a autoimmune condition make – Dr Chi wants me to use this for my SD. Supposed to stop the fibrogen will see if it is of any help it’s enroute to me should have it in a couple of days.
People who have RA Lupus SD some testimonials but when I looked at effectiveness it can be only 33% effective in some cases, but others have been in the 80’s%.
It was like 40 bucks for 3 wk’s for me to try – since the Bolouke & Enzymes have not been too effective for me, & I felt since Dr C. endorsed this Doc will try it.
The MIT lamp is way more expensive with Dr Chi but I got it from the link I posted, same thing for way less! The herbs cost about the same direct from Chi Enterprises or from a distributor – with Dr Chi i had to pay 80 bucks for a consult other distributors can suggest what you should start with & dont charge a fee I later found out. The AutoCine I will be using something called Vein lite too to purify the blood & open the vascular. I am to use his Oxy power & the MIT lamp to help open the lungs & help my heart.
Am a bit leery of how much it can help but will see. Dr Chi has some U Tube videos out there that can be searched. He goes by color of the nailbeds & the moons & tongue color. He said my immune is weak well yeah I think right now it is.Hope that answers your questions. Dr Chi his Lab makes everything in Calif. all made from Chinese herbs.
Will let u know when I get it and i have had a bit of time to try it, but Dr C. knew of the AutoCin & suggested I ask Dr Chi about it.
Best – Jill SD, Lyme & CPn
I sent someone i know who has a child who has a mitochondria disease, some basic info about the Oxypower Dr Chi has as it works at the Mitochondrial level, she works for a doctor who runs the HBOT center. I spent some time with her when I was doing the HBOT dives. She mentioned Dr Chi to one of her friends who works at Vanderbilt in the medical profession, her friend sent me this in regard to Dr Chi – “Also want you to know Dr. Chi has been correct and spot on every time I have come across him with a patient in common. Simple Chinese diagnosis spot on!!!”
I hope both she & Dr C. are correct & that this will also be spot on for me.
Jill SD, Lyme & CPn
This is what is in the AutoCin -Autocin “Original Formula” for rheumatoid arthritis, psoriasis, IGA Nephritis, Lupus, Pemphigoid
Autocin contains the herbs Phytolacca esculenta, Scutellaria baicalensis, smilax china, and plygonum cuspidatum.
Studies have shown it to be effective for various autoimmune diseases.
It is important to note that autocin should not be taken with steroids, cytoxins or anti-inflammatory products because it will enhance its effect.
I have a whole PDF & references, testimonials etc. that the company sent to me, but it’s copyrighted so I dont know if I can reproduce it here.i also spoke to the Owner of Barlow Herbs today. Another doctor who has patients with Lyme told me about her & this product & to contact her. It’s called LDM100 & they make a capsule form too SEES-2000 their website is – http://www.barlowherbal.com/ Both the liquid & the capsule form kill the lyme spirochete & are antiviral, & bacteriocidal. It was said that the capsules help the lungs more which mine are pretty bad, so I went with the capsules as obviously I need a good broad spectrum anti viral right now. One can use this with AP.
Best – Jill SD, Lyme & CPn
Am seeing a positive response to the 500 mg’s of Zithromax as opposed to the 250 mg’s. I did this as a test to see if perhaps I just needed more & when I saw there was some improvement I contacted Dr S. who was fully supportive saying it made sense that my GI was not utilizing the zith as well, due to the SD being in the digestion.
My skin lesions are less thick & softer. I am using the Mino as well.
My stomach is not perfect but better FAR better than it was, so upping the dosage seems to be what I needed.
Still need to be aware & try to give good heart support & lung support as those 2 are hard hit.
My Raynauds also improved much more since upping this dose along with better circulatory help.Sending this update as it may encourage someone that if something is not working well, it does not mean AP does not work just you may have to change the dosage or add in a 2nd ABX. What works for others doesn’t matter it’s what it takes to work for you – some cases have been going on for longer & are deeper set in, all the more reason to not give up. I have had the flu since the 1st of Jan. but i think once i am past this I can more fully appreciate the progress, my lungs have been hardest hit by the flu.
Best – Jill SD, Lyme & CPn
Jill, thanks for the update and glad to hear about your more recent noticeable improvements. 🙂 The mino/zith protocol was a great one for me, too.
I also found the link to Autocin on Dr. Chi’s website, as you mentioned it above. Would be interested to hear how this goes for you, although I know it’s tricky to decipher “what is helping what” when on various things, but perhaps it will have some synergistic effects? Will have to check out the herbs in this product to figure out their actions.
http://www.chi-health.co.uk/p_Autocin.htm
The following statement has me wondering whether it has some immune-suppressive or immune-modulatory effects or just that it might potentiate certain drugs:
“It is important to note that autocin should not be taken with steroids, cytoxins or anti-inflammatory products because it will enhance its effect.”
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