Closed: Either/or? moved to "Finding a Doctor"
A lady I know, who has MSi, took some materials I had printed for her from here and David Wheldoni's site to show to her neurologist. He did, to his credit, examine the papers.
His response? "You don't have this, you have MS." Like she can't have both? No testing, just -- well, what basis, at all? Very odd, to my way of thinking -- I mean, what does he risk by testing for C.Pn.?
Now I wonder: would people be better off to just 'go around' the specialist (neurologist, rheumatologist, whatever) as far as C.Pn. goes? Just go to, oh, an Infectious Disease specialist and say "I think I have a chronic C.Pn. infection." and get treated for the C.Pn. as its own issue? It would avoid all the territoriality (if that's what prompted the reaction) and just get the bug splatted.
Then, if the MS (or CFSi, or RAi, or whatever) improves, deal with the injury, whatever it is, to the specialist. First order of business ought to be to kill the C. Pn.; regardless of anyone's opinion of its relation to MS, it's not living in your body to benefit you. Why not get rid of it?
Ron
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Ron, I am beginning to believe that many MSer's best hope for being treated by a physician for an infection might be through a Lyme doctor. ILADS docs recognize MS as an infection and are willing to treat as such.
Of course, they will treat as having Lyme's, however, since the Wheldon protocol is also effective against Lyme and other coinfections, the docs might be willing to follow it.
I have had direct contact with Steven Phillips (Lyme doc and past president of ILADS)and he indicated as much. If one contacts the Lyme Disease Association they will give three referrals of Lyme literate docs in a given area. These references may be checked with ILADS to see if these docs are members. I would only see a lyme literate doc who is also a member of ILADS.
I continue to think it is a true shame that people with MS self treat and are not afforded the opportunity of being cared for by a physician.
Lexy
Ron and Sojourner,
I absolutely agree. The first thing I did, I contacted Patient Union and their club for treating Lyme. They gave me at least basic info about chlamydia chronic infection, unfurtunatelly they could not help me as the borelia treatment is also very problematic these days, but still better than chlamydia.
Stratton/Wheldon protocol 02/2006 - 10/11 for CFSi and many problems 30 years
This is so important, I think it should have its own topic title, or at least re-post the info to the 'finding a doctor' subject. The chance we take on ordering internet drugs is not to be ignored and finding a treating doctor is one of the greatest hurdles in the whole process. Thanks, Lexy, for posting this.
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
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
minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)
The problem with lyme drs. is that most don't take insurance and have thier own agenda. I went the lyme route and it was very expensive. In lyme drs. eyes everything no matter what is lyme. They also believe in slamming it and not going slow.The lyme dr. that I saw started me on 500mg of zithromax when he added 200mg aday of minocin I went crazy. My whole face and neck and swallowing was numb. I wanted to slow down. He told me he was the dr. I the patient and patients don't come up with thier own protocol and promptly dismissed me. My local gp agreed to treat me and was told by Dr. S to let me go as fast as my body will allow. I did have a postive cpni test. Also a friend goes to another lyme literate which treats msi patients with peroxide iv's. So chose wisely.
200mg doxyi daily, 500 zithromax mwf,flagyli 1000 m-fri.rifampin 2x daily,chloestryramine 2x daily
I like Mackintosh's idea: Let's repost this whole discussion to the "Finding a Doctor" forum. Wish I'd thought of posting there to start with. I will cut and paste all the discussion over. The only problem: They'll all look like mine -- or at least the envelope will. Oh, well.
Ron
On Stratton protocol for CFSi starting 01/06.
Ron
On CAPi for CFSi starting 01/06 (NE Ohio, USA)
Began rifampin trial 1/14/09
Currently: on intermittent
First order of business ought to be to kill the C. Pn.; regardless of anyone's opinion of its relation to MSi, it's not living in your body to benefit you. Why not get rid of it?
Ron
[/quote]
Normally, I would agree. However, in this instance, I do have an answer. Fear. I have been lurking / reading for several weeks on the site, as it is quite possible CPni is the culprit responsible for my problems over the last many years. However, lately I have been feeling quite good, and especially compared to some of the tales I've seen here. Fear of feeling worse has definitely kept me from pursuing this further.
Don't believe everything you read! Since people use this site to get support for difficult times, you hear that more than you hear those for whom it's been a more gradual or less symptomatic process. The key is to go gradually and take your time, especially if you are in a stable condition. Cpni can build up sneakily while you are in apparently "stable" condition, then treating it when your load is higher is indeed a challenge.
On Wheldon/Stratton protocol for Cpn in CFSi/FMSi since December 2004.
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
Sarah said "since it was me who started this onlne business I sometimes feel awful about it"
Oh my Sarah, feel good about it! I have huge gratitude for you coming out about your treatment. Kudos and honor to you! Maybe I feel worse some days but I am thankful to use this empirically and see what happens. ANd Bethae, I have more energy, no spasm medication, and have not felt bad in general. I am personally doing well overall I feel, though I still can't walk well and in December I did fall more often than usual for me. I have not fallen at all in Jan or Feb. so if that is a measure of how I'm doing I'm better
I am going to do flagyl 4 today and am going to use the 2gram approach outlined by Paul. We'll see what we get and I am working tomorrow, and am not worried about how that will be interestingly enough. One thing I do know I will be agressive with my vitamin c and other supplementsi.
Marie
Sarah,
do not be in any doubts. It was the best thing you could do. Where we would been without you, David, Jim and this server. I would never started treatment. I only investigated that some abxi were helping me, but treatment is another thing..Not speaking about fact that without this server and downoloaded information I would never persuaded any doctor.
Stratton/Wheldon protocol 02/2006 - 10/11 for CFSi and many problems 30 years
Bethae3, please, if cpni is the cause of your problems, just do it. I keep saying this over and over, but I am one of the lucky ones, if one can be lucky with cpn infection. I caught it SO early, the reactions have been all but non-existent and I have been able to work at a physically and mentally demanding job every single day. I am in my fifth month of the treatment and I run up stairs, I paint walls (not canvas, like Sarah), I take care of my mom with her broken hip and no one but a handful of close friends even knows about my condition. The apprehension will drive you mad, but the reality of just doing it is nowhere near the anticipated awfulness!
I am not criticizing you, but if you think you have this time bomb inside you, why would you want to wait until it blows up and does some kind of permanent, irreversible damage when all you had to do to prevent it was start abxi now? If you knew you would develop, say, cancer for certain sometime in the future, but you could absolutely prevent it just by taking three pills a day for maybe a year, you would do it. This is no different. Why would anyone deny themselves a cure out of fear of some reactions they might never even have? And, if you do, so what? Compare a couple of bad days or bad moments to the hell that can come, out of the blue, with cpn infection's results. I weigh my ability to walk on my own two feet as a lot more important than some twitches or discomfort I might temporarily experience. Hmmmm, I think I choose to walk, swallow, have my energy back, know my brain is firing on all cylinders again.
We were all afraid to start this before we did it. The reason we all post here is because we want newbies to know the process and to have support as they, too, go through it. Fear accomplishes NOTHING. Taking charge of your own health and determining the quality of your own future? Now THAT's an accomplishment!
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
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
GrannyC- You can stay on the minocin, it's considered equivalent to doxycycline on any of the protocolsi. You will want your doctor to add 3 times a week azithromycin and stay on that. You can start on the NACi as soon as you get it. Then pulses of the flagyli (or tinidazole) while you continue on the others.
Now, here's what you do for your doctor visit. Go to each one of these pages in the Handbook, click the "printer friendly" link at the bottom of each and print the resulting pages:
http://www.cpnhelp.org/?q=simple
http://www.cpnhelp.org/?q=strattonprotocolupdate
http://www.cpnhelp.org/?q=wheldon
These are the main ones he needs to understand in order to appreciate the rationale for the full protocol and why, without it, you just relapse because you aren't killing the EBi and Cryptic forms with mino or azith alone.
Then you might also print the following to give him for additional support:
http://www.cpnhelp.org/?q=bloodtests
http://www.cpnhelp.org/?q=dr_stratton_answers_some_
http://www.cpnhelp.org/?q=liverprotection
http://www.cpnhelp.org/?q=reactionstoCAPs
On Wheldon/Stratton protocol for Cpn in CFSi/FMSi since December 2004.
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
Bethae3,
Dr. Stratton proposes at http://www.cpnhelp.org/?q=strattonprotocolupdate [quote] I would still give just one 250 mg azithromycin tablet and then wait two weeks to see if there is any reaction to it. [/quote] There -- just one single dose of Azithromycin as a means of testing for C.Pn. empirically. Presumably, it would cause an endotoxini reaction, and then an improvement. One dose. Then, armed with that knowledge/preview, you could make a more informed decision.
Besides, if you do react strongly, it might be good to know that before some Doctor innocently prescribes a two-week course for a sinus infection or something! You'd be getting all the herx and none of the benefit!
But please think about what the others here have said -- that lady that I spoke of in my original post went for years with mysterious digestive problems, numb patches, etc., before she came down with MSi. What if this protocol had been available then and she'd got rid of the C.Pn? No one knows for sure, but I don't think she'd have been the worse for it, and she might have, might have, forestalled the MS, or at least delayed its onset.
Ron
On Stratton protocol for CFSi starting 01/06 (NE Ohio, USA).
Ron
On CAPi for CFSi starting 01/06 (NE Ohio, USA)
Began rifampin trial 1/14/09
Currently: on intermittent
Also, I do understand about doing it before the load gets huge, but it's already been 8 years. I also know what Jim K means about the posts - I belong to two other message boards for medical issues, and the flavor of support and information exchange is very similar. I guess I maybe wasn't very clear.
After several dxi over these 8 years, and many different docs / scrips, I am feeling very stable right now. At one point, I was nearly housebound, and I cannot afford, emotionally, physically, or financially, to return to that time. If I had found this site even three years ago, I'd have been hounding my docs to get me started. However, now, my fear is that in this case, the cure would be worse than the disease. Especially since the protocolsi are relatively new, and I "hear" very few who have been able to stop treatment. If this requires permanent meds to keep it in check / kill it off, then is that really much different than taking other meds permanently to keep the symptoms in check? With CPni being so prevalent, does the risk of reinfection go up after you've killed it off? I guess I just have more questions before I'll be ready...Bethae3,
yes, high prevalence is also one of the question, which very dissatisfy me. If I go trought the treatment, then what to do, if all people around me have some chlamydia load?
But I have no doubt at starting treatment. I was so sick, lost my work due to the illness, that there was no choice. Maybe today you are not dying, so it is good time to read info, try to find a doctor for consultation and think. After your problems return, it will be much more difficult to do anything you will need, especially go around the doctor and organize treatment.
If I had only mild problems and generally would be healthy, I would not start, but if I had serious problems for years and now feel little bit better, I would start, because it is a time bomb and you cannot know day, nor hour..better to be prepared than wait for creature wake up in the day you will most need to be healthy.
Stratton/Wheldon protocol 02/2006 - 10/11 for CFSi and many problems 30 years
Sarah,
how slowly do they grow? I should stop abxi some time before pregnancy totally..
Stratton/Wheldon protocol 02/2006 - 10/11 for CFSi and many problems 30 years
Affordable, easy, orally administered abxi or ridiculously expensive, injectable msi drugs with all their own charming side-effects? Something that has helped nearly everyone who has taken it or something that barely helps anyone and only claims to slow down the certain, deadly progression of the disease? Of course everyone must make their own decisions, but why would anyone choose not to be helped and maybe attain a cure? Like they say in the lottery commercials, "you can't win if you don't play". And the odds are so much better than the lottery, too
!
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
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
Granny C: As our sales manager used to say, "the one with the best data wins". Hurray for the cpnhelp.org site!
Ron
On Stratton protocol for CFSi starting 01/06 (NE Ohio, USA).
Ron
On CAPi for CFSi starting 01/06 (NE Ohio, USA)
Began rifampin trial 1/14/09
Currently: on intermittent
Bethae3- your questions are good ones. On having taken doxyi and azith without problems: this suggests to my mind that you don't have as much to worry about in terms of treatment side effects. The suggested pace of the protocol is just that, suggested. Dr. Stratton also is clear that each patient has to learn their pace based on their reactions and how long it takes their body to recover from them. So if you aren't reacting, you can ramp up to the dual abxi and NACi more quickly. Likewise with the Flagyli pulse. I would take the first pulse as a single 500mg dose, just to see how much I reacted. If you have little reaction then next pulse you could challenge longer. Again, a number of patients have had little or no reactions to the protocol agents except improvement. Others, like myself, have experienced major reactions at each step. You are already saying that you have littel reaction to the basic abxi, so there seems little reason to hesitate for you.
There is some evidense to suggest that if you are able to fully clear the immunei cells of Cpni (macrophages and monocytes) you are much more resistant to future infection. In the Mitchell/Stratton patent research, infected mice proven to have been completely cleared of Cpn by use of INHi and Flagyl were reinoculated with Cpn and did not get renewed infection (as proven by the highly sophisticated tests developed in the patent).
Now, I also know of one person who had felt well, stopped all abx, and in a few years time was gradually going down hill again. He is back on the protocol now to clear it and plans to do a longer period of periodic courses (as Sarah describes) to clear any residual and keep it in check. This same person knows people who were on the original clinical trials in the patent research who to this day are clear of disease having done the protocol for 6 months to a year many years ago.
It seems to me what Mac is saying to you is: what's the risk on the other side of "should I or shouldn't I?" If you know that you can't let yourself get so nonfunctional as you once were, it seems fairly clear. Or to put it another way, what are your choices, really?
On Wheldon/Stratton protocol for Cpn in CFSi/FMSi since December 2004.
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
Sarah, how nice of you. But do not worry. I am not so stupid. I am feeling better, yes, but in comparison with my image of wellbeing it is still horrible. Yes, there are two sides of view. There is a big progress in comparison with my condition three months ago. But the following treatment depends on my ability to get medications and it will be big problem. NACi I can buy without prescription, but azithromycin or metronidazol is not available. I can only dream about really "Combination Antibiotic Treatment Protocol's", this is our reality. I wasn't able to get needed combination with doxycycline. And as well we have to manage this treatment threefold. We have had troubles for many years and we have read many diagnosis, we are sick of these troubles and missdiagnosis, so we can't it give up. First time I heard of any chlamydia on 8.11.2002. I read it in report from allergist. But she insisted, the doctor, on innocence of this germ. You see, sometimes I think that the globe is still flat.....Thanks to people like you we have got chance to overcome Middle Ages settled in minds of our physicians and our autorities.
Jan
On CAPs:12/01/2005 till March 2013; 20 years CFSi,IBSi, fibromyalgiai; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertensioni...