Hello new to board

A forum for the discussion of antibiotics as a potential therapy for MS

Hello new to board

Postby mrhodes40 » Fri Jul 29, 2005 3:56 pm

8O
Gosh, Hi! My name is Marie. I am a nurse and I've had MS for about 15 years. I am about an edss 4. I read pubmed all the time and am into the non autoimmune model for MS (big believer) and am also into antioxidants and other supplements. I also use LDN. It makes me have a sense of well being and improves my sleep but impacted my mobility not at all.

My MS attacked after a week in bed with a URI and a high fever. When I came out of the bed I could not walk with out spasticity and I had obvious arthritis. It was seronegative for 7 years. I developed sciatica about 5 years ago with radiculopathy. All of these things can be caused by CPn or Lyme. I had a large hike in Mt Rainier in shorts (what was I thinking) about 3 months before getting ill. I had lots of bites.
Luckily, I found a local MD who treats MS with abx and I copied and gave her the Whledon stuff and VU stuff. I am very excited to use this regimen.

Oddly, the last time I took an abx for a UTI I had to take Bactirm as I was resistant to my ususal rx. Instead of feeling well on day 2 with a return of energy and sprightlyness, my head ached I was extra off balance and kept hitting the door jamb, and dizzy. Stayed that way until I got off the med at day 7 when I bailed. I had worried it caused an exacerbation. Now I read that bactrim is a med that can kill CPn. I'm thinkin' this is a very positive sign! A little herx!
Does anyone recommend waiting until it's cooler to go through that herx reaction time? How big a deal is it? Are we talking terrible? What helps?
Shall I keep the LDN while on abx? I beleive the Medical Hypotheses version of what happens in LDN with it intervening the the glutamate and peroxynitrates cycle. In part that might hamper immunity locally though it should also be protective of the nerve. Does the abx we use require the immune system to kill the bugs or just to come in and clean up the dead material? IF it just cleans up the peroxynitrates are not important to the cleanup operation, in my understanding (which is modest). We get to cellular levels and it's complex.

Hello to everyone! I will read with interest you posts. I am thankful to have something new to try. I am convinced traditional medicine will be years away from using this routinely. I am grateful to have a chance to use it now. Thank you to Sarah and David for sharing this protocol with everyone.
Blessings!
Marie
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Postby LifeontheIce » Sat Jul 30, 2005 3:54 am

Marie, very glad to meet you.

I am on Dr Wheldon protocol and LDN. I started LDN in May 2004. By that time I did not have any neurological symptoms, but the very next day I felt like a havy weight was lifted from my shoulders. It came as a surprize because I believed I was doing fine. Another benefit was an addition of beautiful, colorful dreams which I still enjoy.

LDN strenghtens immunologic system while antibiotics wipe out Chlamydia. I don't see any negative interference.

Right now I am on my seventh pulse of Metro and still getting minor paresthesia in my left thigh. I assume this is a Herxheimer's phenomenon.

Wish you great success with the antibiotics.
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Postby mrhodes40 » Sat Jul 30, 2005 8:46 am

:D
Thank you Life on the ice! What a great resource. I will keep the LDN then. I am so anxious and excited to start that I feel like hurryingup the appointment. On the 16th I meet with the antibiotic doctor. She beleives that all autoimmune diseases are caused by polymorphic bacteria of some kind that we simply cannot culture so treats all patienets with them. Her specialty is chronic illness. I made an appointment after having lunch with her for something else as soon as I realized I'd found someone who believed as I do. I gave her the Wheldon protocol and the VU stuff so she could see how they are doing it. I believe she will work wiht me on this and do it that way.

My last neuro appointment was a total bummer. I'm SP now and he said What did you expect? you have MS. He wouldn't even talk about the Prineas research. He wanted me to take novantrone. He said we know it's autoimune because other wise the meds we use now wouldn't work I thought you bozo, who says they work? No way in heck I'm supressing my immune system and hurting my heart with novantrone just because you are myopic.

A big challenge is feeling positive. You know, I want to hope and I'm afraid to. I was so pumped for LDN.....I'm glad it helps me sleep and feel a sense of well being, but I wanted to walk farther than across my house without a cane. That it did not do that was a let down. So as I go on this journey a part of me is saying well maybe it'll work. Don't get your hopes up. Thank you to all of you who articipate here so others can have that support. You know when you color outside the lines people around you caution you to, get back in line. It's great to have a place to be you and take control of your own health with support.
blessings
Marie
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Postby LifeontheIce » Sat Jul 30, 2005 11:19 am

Problem with most neurologists is they don't appreciate patient's intelligence. Mine is my colleague who offered me Antegren in March 2004 ignoring the fact I was neurologically asymptomatic while taking Lipitor on my own and much better than the patients with MS we share. He worried I took my knowledge about MS from the Internet.

Katman (another one on Dr Wheldon regimen) described what modern neurology has to offer as poisons delaying final disaster. I could not agree more. Novantrone falls in that category.

Marie, you can take care of yourself without anybody's help. It is so easy to order the medications on line. Now, that you have the right doctor it is not necessary.

Hope is in human nature. Chlamydia is the culprit and you will recover. Best wishes.
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Postby SarahLonglands » Sat Jul 30, 2005 12:57 pm

Hello Marie, here's another one very glad to meet you too!

I liked your comments about your neuro. I do try to think kindly about mine, but I'm sorry, I can't! Mind you, having aggressive SPMS at the time of diagnosis, at least I should be thankful he didn't offer me novantrone. Perhaps it isn't available over here, though. :?

No, keep on taking LDN along with the antibiotics, no harm there at all.

David does now recommend that people don't start the metronidizole/flagyl pulses until they have been on the other stuff for at least three months, so that should tie in with waiting until weather gets cooler. This is the one that actually kills the bugs. Not entirely necessary, because sooner or later the cells in which they hide will die and be replaced, but this could take years and years. In the meantime, of course, new ones could come along. So it is far better to do the whole thing. My worst reaction was after the third bout of metronidizole, but the good thing about this abx is that you can time it around your life. If you are going on holiday, say, don't start a bout until you get back. (He also thinks you might well be right about your reaction to bactrim as well.)

As I have said to many people worried about having neuro-lyme disease as well as MS, it doesn't really matter in a way, because the treatment is the same for either. Well, it is if you are a microbiologist, anyway. If you are a neurologist, on the other hand, the preferred course of action for more advanced cases of MS seems to be to blast away at the immune system, and as for Lyme........................

Either you or your antibiotic doctor would be most welcome to write to David. You can find his email address at the bottom of the first page of this:

http://www.davidwheldon.co.uk/ms-treatment.html

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby mrhodes40 » Sun Jul 31, 2005 9:44 am

Gosh! Thank you Sarah and Life on the ice.

Lifeontheice I apprecite you comment that I have a right to figure out my own health care regimen. My neuro made me feel like an idiot for not taking advantage fo modern medicine, but I think novantrone is poison as you quoted Katman.

Also as to the comment that your peer feared you were getting information off of the interent, Gosh, I'v heard that one too. I think medicine in general would be better off if more people would read the NIH research on pubmed instead of the Journal of the American Medical Association. A study was done on MD's who read the JAMA and on a test some time after reading the journal, the information they retained came from the advertisements, not the peer reviewed research which was the feature article. This explains why my doctor is so quick to recommend novantrone and play down it's cardiotoxic side effects; he has allowed himself to be influenced unduly by the marketing literature and is probably even unaware that this has happened. Since I saw him last there has been , I believe, a black box warning on novantrone about the cardiotoxic effects even years after taking it and even in young people, so I bet his face was red when he read that since I was very adament about not taking it due to that exact problem. He told me it was not an issue in my case, only for the elderly who already were at risk and that the cardiotxic concerns were overstated, which is directly out of the marketing material . It goes back to the issue of intelligence. I am intelligent and though not an MD, I can read and discern good from bad information on the net. The VU work and the Wheldon regimen are well thought out and well backed by research even if not common knowledge yet. I believe the aveage doctor has in fact accidentally given his mind over to marketing influences and ahs forgotten to think about physiology and to think for himself. The Abx doc said to me "I do not believe in autoimmunity. The body is simply smarter than that. it's reacting to something and we're just too unsophisticated to figure it out." That's a free thinker who learned her physiology.

But I do not blame him in a way either. His clinic is a research clinic and they get a significant portion of the $$ they use to run the clinic from the pharmaceuticals. He absolutely totally believes the autoimmune model and cannot be swayed from it, partly because to do so is to question his own approaches. He must be treating hundreds of people with immunosuppressant drugs. All the other ideas out there are unproven and equivocal in his mind, and if I talk to him about the VU work he points out quickly the research done by the gal that stated that VU was using questionable culturing tactics and none of her MS people had CPn as well as pointing out the notion that minocycline is antiinflammatory proving once again autoimmunity. It is almost as if every approach which is not autoimmune must be molded and forced throught the autoimmune model
which causes this enertia in research.

At any rate, I am thankful to have an opportunity to use this approach and for every contributor to his board. Thank you very very much. I am glad to know that there is availablity of the Rx through the net. If my abx believing doc says she just uses minocycline alone for two months or something, I'll be doing the real regimen this way.


Gosh I hate to be bothersome but should I take copaxone while on the rx? Copaxone increases t-suppressor cells and is somewhat neuroprotective because of it. Does this approach rely on inflammation of the area at all to clean up the disabled bugs? Macrophages must get in there to clean up. Is it important to have the t-killers in there to do a part of the activity? my guess is no, but I am not sure of this not clearly understanding yet the lifecycle of the germs and the way these particular abx work. if so maybe going off copaxone is good so my immune systme is un "modulated" by it's influence.
I also take estriol, which reduces lesions in the brain on MRI. A lesion is an area of fluid essentially which the MRI can see as I understand it so apparently Estriol closes the bbb perhaps or increases toleralce to foreign proteins since it is the pregnancy estrogen (ie it increases tolerance to your fetus..) once again the immune system is modulated by this mediction. Any thoughs on dropping these items for success? I'm keeping LDN
Thank you for the offer to write you kind husband Sarah. I hope tha answer to my questions will be useful to others and can be written and answered here. It sounds as if you run things by him then post the answers here and I hope this is not a burden to you.
Blessings
Marie
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Postby LifeontheIce » Sun Jul 31, 2005 2:07 pm

Marie, you either believe in antibiotics, or not.
If you believe that Chlamydia is the cause you should go for the antibiotics alone.
Copaxone has a poorly understood mode of action, in fact some studies showed that it is not better than the placebo. The good thing about it is that it's harmless except, perhaps, for the occasional terrible skin necrosis and the scary immediate post injection reactions. How do you know that increased number of T suppressors is what your body needs?
You already have two safety valves: LDN and Estriol. Do you really need the forth one?
I can relate to what you are going through, in the beginning I was afraid I'd lose all improvements and get beyond the point of repair. I gave up Lipitor that made all my neurological symptoms go away and started antibiotics. The benefit? My mental functions increased dramatically, although my short span memory still needs improvement. I hope I will regain it , but the extent of the brain damage was enormous.
Another thing that makes me respond to the antibiotics so well is the fact that my brain lesions were a lot like encephalitis. I hope what I have is Chlamydia pn encephalitis.
If your form of MS is caused by this organism you will get so much better. If not? We all take risks. People on traditional therapy get worse with time, no matter how well they initially respond.
The truth is we take the best we can as long as our brain allows intelligent decisions. We are in avant-garde.
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Postby SarahLonglands » Sun Jul 31, 2005 3:14 pm

I was just thinking about this over dinner and about to say pretty much the same thing myself, but now I don't need to bother, so thankyou, LifeontheIce aka Torpedo Pilot! Your short span memory will certainly improve. :wink:

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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