New to your site-husband has progressive MS

I just located your site.  None of the traditional MSi treatments has helped my husband, and now they want him to go on stronger Rebif.

We thought he may have lyme which has new info showing a relationship between MS and lyme-found in the same geographic locations.  Now I have found your site with a new bacteria.

Please tell me how some of you with MS are doing on this protocl? We see his doctor tomorrow.  None of the Neulogolists we have seen have considered looking at the Cause of MS.

Thanks for your immediate help!

Comments

Hi kfpad,I'm 24, been on

Hi kfpad,

I'm 24, been on abxi 1 year for a new-ish case of rather severe CFSi (definitely not MSi in my case, no motor issues). I have been fortunate; I am over 95% improved.

Personally I thought Fritzsches paper was often too speculative, tho this criticism does not apply to every point therein. Anyways, you can google the full text of the Brorson paper on direct detection of spirochetes in 10 MS patients. Unlike the Vanderbilt works on Cpni in MS, this one has not been responded to in print by any other scientist except Fritzsche, to my knowledge. If you want to show it to a doc, email me for the actual journal version which has an electron micrograph of an immunolabelled spirochete! I've always wanted to show that one to a specialist and see what they think, but of course I dont see MS specialists, having CFS.

I think these protocolsi are excellent for borrelia. One thing you might want to check into, eventually, is the confusing world of various other tick-vectored microbes, specific treatment of which seems to have been critical for certain patients, according to their reports. Lymenet has a large population, hence a huge amount of raw patient information, tho I am afraid the majority of the scientific rationale one reads in postings there is incomplete or incorrect.

Another note is that rifampicin is inactive against all spirochetes. However, all the abxi most commonly used in this sites protocols are broadly used by people with a lyme diagnosis - ie people of various disease phenotypes who have a tickbite hisotry or serologyi suggesting refractory borreliosis may cause their disease. Physician-researcher Sam Donta concludes the macrolides are ineffective without the addition of lysosomotropic drugs like hydroxychloroquine, tho my personal reading of patient testimony (which, regarding this issue, has been very casual and nonsystematic) does not noticibly reenforce that view.

Personally, I have no idea what the hell is fundamentally wrong with me, and I dont see how anyone really can, for sure. I could well have multiple pathogens, and the one making the firmest stand between me and total recovery might not be the most numerous one, the most evident one, or the one that originally got me sick. Therefore, tho it is well worth learning about specific pathogens and their specific exploitable weaknesses, and tho the deep exploration of Cpn here is tremendously valuble, I favor modifying antibacterial treatment largely empirically. I have done 10 or so antimicrobials and had varying improvements. After about 3 months of taking tinidazole I realized my recovery was accelerating, so I locked into tini; now almost nothing could make me dream of stopping it anytime soon. I've been taking it with a stiff dose of doxyi for several months now and will soon be adding a third drug.

Good luck! My impression is that my luck with antimicrobials has been significantly above the median, but I find that the majority of people with idiopathic diseasesi of immunei activation do have at least a good response to abx that pleases them, tho there are certainly a percentage who respond little or none. Improvement can be reeeeaaaaal slow. I am off to go run a few miles myself, something I certainly couldnt do a year ago or even 4 months ago. When I first did it was like a hallucination. I'm not even that much slower a runner now than I was pre-illness, tho exertion doesnt feel quite right. I felt little hope thru most of my treatment, as I gained function but still felt like complete crap month after month - but now that too has changed very dramatically, after much patience.

We went to our local doctor

We went to our local doctor today, and I am pleased to report he is open to have my husband re-tested for Lyme a second time.  There is a recent article stating the geographical relationship between MSi and Lyme on the Library of Medicine from a doc in Norway.

Our doc is open to trying one of these protocol if the Lyme test come back negative.  It seems this protocol could treat Lyme too.  Does anyone know?

If my husband ever gets better, I hope to send a video tape of him walking (hopefully running) to the top noche neurologistswho rebuked me for questioning the diagonsis and treatment.

Are any of you on the MS drugs in addition the protocol? I look forward to reading more of your stories.

Yes, this treats Lyme's The

Yes, this treats Lyme's
The combination abxi and flagyl pulses is a common approach to Lyme's as well. Some add plaquinal as well for Lymes. Like Cpni, it's a long term thing.

 

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

How am I doing on the

How am I doing on the treatment? It's been only a few months. I began on August 1, 2005. Had all the symptoms talked about in the documents cited here on CpnHelp. I was feeling really bad last week and then on Sat and Sunday began to feel very hot like I was running a fever. It seems I am feeling better after that. The constant brain fog is gone but not the ringing in my head. I am learning to discern the endotoxini reaction.
It's a sequence or cascade that begins with the ringing in the head, stiffness in muscles, soreness in joints, disorientation, bowel irritation and overall body pain. After it resolves, I feel like it never happened.
As I understand, it will take a long time to purge the organism from my system. I have had no worsening of disability during this time.
Raven
on Vanderbilt protocol since Aug 1, 2005

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

One of the best things to

One of the best things to print out to show your doctor is this:
It has actually been printed in the "Hospital Doctor" which is a weekly UK paper for the medical profession to read over coffee.  A surprising number of doctors have responded to this, especially if a family member is also a sufferer!  I think I ought to split it up to make it more user friendly: not everyone has got an A3 printer.  If I get the time later, I will put a link to the printable version at the bottom of the web-page.
Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

 KF - I'm only on day ten

 

KF - I'm only on day ten of antibioticsi, so I'm not the one to ask (too soon to tell much of anything yet).  What I did for my doctor visits was print out Dr. Wheldon's Protocol, all twelve pages of it (it's been expanded a bit since then) multiple sclerosis caused by a response to chronic infection: treatment possiblities< (<click here).  I also printed out the 'Adjuncts' article, which is another dozen pages Easing mitochondrial stress in chronic Chlamydia pneumoniae infections< .  I then printed out Sarah Longlands - MS page-2<  , which outlines what happened with his wife, Sarah, and her treatment and recovery.  Be prepared for the comment, "But this is just anecdotal", which every doctor has said to me (and, apparently to Sarah), some not so kindly.  Also, write down the web address for CPNHELP.ORG  for the doctor.  If they're serious, they'll do the reading.  If they aren't, there's nothing in the world that will convince them... until we all jog back into their offices and prove it works!  Take a quick read of LifeontheIce's story here on cpnhelp, as well as Marie's,  JimK's and Katman's.  It will help convince you that you're on the right path.  They have all had great successes and there are others here who are relative newcomers who are all having good results, as well.  BEST of luck with the doctor tomorrow!                             

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

But how are you doing on

But how are you doing on this treatment? Are you improving?
Are you staying the same with no further progression?  I just wanted to share something with his GP so he may consider giving him this RX.

Thanks

I truly can't figure out why

I truly can't figure out why the Neurology community is in such deep denial about MSi and infection. I think I will have to go with the conspiracy theory.
They are being manipulated by the drug companies who have everything to lose if the truth gets out. Imagine all the drugs for all the diseasesi thought to be caused by Cpni that would no longer be profitable. It staggers the imagination.
Raven

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Neurology community? Deep

Neurology community? Deep denial?  Say it isn't so, Raven!  My theory is they are heavily invested psychologically in the 'status quo'.  They learned to believe the world was flat (i.e. MSi is autoimmune) and they have proceeded on that belief for lo, these many years.  Now, the possibility that they are wrong has reared its ugly head.  Imagine the loss of standing, the uncertainty, the attack on the very ego!  There are several neurologists in the midwest who have built incredible wealth and reputations on the basis of their cutting-edge MS treatments.  They are doing stem cell work, blood/plasma transfers, all sorts of wondrous stuff.  How demeaning, if mere antibioticsi turn out to be solution to most cases!  They have a vested interest in total denial.

 

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

KF - Most neurologists

KF - Most neurologists we've encountered have little interest in the cause of MSi.  I've had two belittle me for broaching the very possibility it might be an infection. They will offer one of the standard treatments and basically tell you to hope it's a mild case.  Those of us here, in various stages of treatment for cpni (chlamydia pneumoniae) infection, have had to be VERY proactive and either insist (doesn't work too often), beg (it occasionally works) or resort to nefarious means (i.e. internet drug purchases)  to get ourselves on the protocol. 

I can speak from experience, having cruised the internet for three weeks, two to six hours a day, after my 19 August 2005 diagnosis, this is by far the most informative site to visit.  Most everything you need to know about cpn is here or is linked here.  Jim's right; if you want to read about people's experiences with treatment, go to ThisIsMS, but the info can be really fragmented there and you'll have to plow through a lot to get 'the big picture'.   Stick with the 'regimens' topic and 'antiobiotics' and you'll find more than enough to point you in the right direction. Keep us apprised.  Everyone here is unbelievably supportive.                                                                              

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

KF-Look through the Basics

KF-

Look through the Basics page, then especially the Patient Stories links for specifics on MSi, then specifically check out David Wheldoni's protocol under Treatments/Protocolsi link. His site has the most specific info for MS. 

You should also look at the ThisIsMs< forum on antibioticsi. Lot's of actual MS users of these protocols there. You'll get some immediate user-data there.

On Wheldon/Stratton protocol for Cpni 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