This Is MS Multiple Sclerosis Community: Knowledge & Support

I want to thank you all for posting this information. I haven't yet went on antibiotics as I have an appointment at a major MS center shortly and want to have my diagonsis solidified first- I'm only "probable" at the moment.

I've had preliminary discussion with the nursing staff at the center and it sounds like they might even be open to testing my CSF for C.Pn .

I also have wondered about Lyme disease, since it appears that there are lots of cases where it is difficult to diagnose (seronegativity is common, Lyme is difficult to find in CSF, etc- a nice scientific listing of these issues is available at http://www.lymeinfo.net/LDSeronegativity.pdf).

Anyway it occurs to me that this regimen of antibiotics would probably also be quite effective in Lyme.

Yet another reason to seriously consider treatment with antibiotics.

If and when I use this treatment, I'll be sure to post my experience on the board.

Since my first attack last winter, I have been posting on this site. You will see some postings about ABCRS drugs and my side effects. After three months, I decided to come off the Inteferon due to the side eefects. I began to become interested in the idea of that my symptoms was due to a possible infection. Since Minocycline is well tolerated, I persuaded my GP to give me a prescription. Although, I posted my results of this last month, I thought it was prudent to copy/paste it here for people to read it again. Let me add that I want to thank Sarah for all her responses. God bless ya. I don't know ya, but I love ya.

[list=]After giving up on one of the ABCR drugs due to the side effects, I felt the need to at least do something for my newly diagnosed MS. I convinced my GP to give me a prescription for Minocycline.

The first thing I have noticed on being on the antibiotic is that it makes me slightly lightheaded. I haven't experienced any stomach problems yet and I am thinking of adding acidophilus to my diet of daily supplements.

10 days into the medication, I thought I was experiencing flu like symptoms. I was having the chills and felt achy all over for two days. Then, after that stopped, I started to have some respiratory problems. A cough developed like I needed to expel something within my chest. This has been continuing for three and half days. Today, it feels a little better than yesterday.

I do not know if the above issues is due to the fact that the antibiotics are fighting an infection within me or it is just a plain old cold. I wasn't experiencing any other cold symptoms, such as a sore throat or sneezing.

I had another reaction. It would be hard to accredit the antibiotics for it, though. I have had back pain for the last 6 years. I thought it was due to my lifestyle of golf, snowboarding, and plus just getting older. I have a slight bulge disk and I see a chiropractor regularly. One day last week, my back stops hurting... completely!!! It has not done that for six years. The chiropractic visits would make it feel better a little, but the pain and stiffness would never go away completely. Today, it feels really good, even after playing a round of golf. Actually, it was a little stiff after golf, but that went away the next morning.

The chiropractor says no way that the antibiotics could have caused the turnaround. But the coincidence of it getting much better after a week of antibiotics is hard to overlook.

I still have my tingling sensations on the affected right side. This hasn't diminihed... yet.

Has anyone else tried the antibiotic treatment?[/list]

I also like to add a brief blurb about my past visits with my neuro.

After waiting for hours in his office, it is finally my turn to talk to him. He looks over my MRIs and says, "Yup looks like MS to me." Here are your ABCR options. Pick one." My second visit with him a few months later was uneventful. I didnt even get to see him because he was too busy with other patients. I just saw his nurse. My third visit two months after that, I ask his office on whether they are going to have a setup for the Antgren IV. The response was... "Antgeren? Whats that?" I fired them immediately.

I need a neuro. Since I am going down the path of using antibiotics as a treatment, I need an open - minded neuro. Does anyone know of a good doctor in Colorado?

Please help.

Thanks

You wrote:
I need a neuro. Since I am going down the path of using antibiotics as a treatment, I need an open - minded neuro. Does anyone know of a good doctor in Colorado?

If you find one, please let me know!

I am intrigued by this thread as I've wondered if West Nile Virus was a trigger for my MS. I never had any MS symptoms (unless my periodic winter time Raynaud's disease symptoms were/are MS related) until 5 months after having WNV. I know you're all talking about microorganisms, not viruses, but just the same...

Wilson, are you still on the Minocycline (I presume you were taking 100mg every 12 hours)? If not, for how long did you take it?

Have you had an MRI since starting it?

Thanks.

My girlfriend also lives in Colorado (Denver area) and has had very little luck in finding a non-dismissive neurologist. We ended up getting antibiotics over the net. Please see my previous post and Sarah's about some cautions if you decide to pursue it this way.

Hi Carolsue, very interesting post you made, I am going to ask you alot of questions, hope you dont mind ..

So until 5 months after you had WNV you had never been diagnosed with MS? And until then what were your symptoms? what did they use to diagnose your MS, what did they say showed them you now have MS?

Had you been having long term medical problems that the doctors were uncertain of the cause/causes?

What was used to treat your WNV?

Hope you dont mind me asking all these questions and if you would rather not answer, that is understandable, I just find this very interesting and would like to know more about your situation..

Thanks , Philip

Hi Philip,
For 40 years I've been an extremely healthy person who catches a cold once a year that slows me down for a couple days.

In Aug 2003 I was backpacking in an area thick w/ mosquitoes. About a week later I had a fever and body aches and fatigue that were not typical of a normal cold/flu. I knew I had not had this bug before. Fever lasted several days and when it ended, I broke out in a non-itchy full-body rash that lasted about a week. I compared notes with friends in the then WNV-epidemic Denver area and was convinced that I had indeed had WNV.

In Jan 04 I had slight numbness in my left leg. Seemed esp. odd to me so despite feeling like a whining hypochondriac, I saw a GP who said "wait and see." Numbness went away within 3-4 weeks.

In April 04 I developed a hemifacial spasm. Saw same GP who said "get an MRI. Today." The MRI showed lesions, some active, so I saw neuro. He seemed to think the MRI was pretty straightforward, and since I'd had 2 events separated in time (blah blah blah), he was ready to dx RRMS, but ordered a blood test to rule out all those other things (including lyme, etc.) I asked him to include WNV in the test which came back positive: I had indeed been exposed to WNV, which, of course, I already knew!

I've no idea if my WNV is related to my MS. To date I haven't found any literature connecting the two, other than that WNV can cause MS-like symptoms (e.g., spasticity and dizziness). I "believe" that I recovered on my own from the WNV. I don't know when the demyelination started. To my knowledge, I never had any MS symptoms prior to the leg numbness in Jan 04. But we all know the lack of correlation between disease progression and symptoms. Maybe I've had MS for years.

so, what are your thoughts about this?

I'm seeing a different neuro (MS specialist) in Oct just for "fun". I'll see what he thinks about WNV.

carolsue

Hello, Everyone,

I thought I would just make a few comments about taking the antibiotics:
Although the instructions in the packet might read differently, the instructions given on the typewritten blurb stuck on the packet/jar by the pharmacist just says 'twice a day' or 'three times a day' in the case of metronidizole. I thought at first that this meant I had to take them exactly spaced throughout 24 hours, so when to take the acidophilus? 'Don't worry,' said my husband, 'take one lot with breakfast and one with dinner and the third lot of metronidizole with lunch, then you can take the acidophilus before you go to bed.' Great relief. It has worked, anyway. He is the specialist microbiologist, after all!

Now my thoughts about WNV for Carolsue: C PN infections, whether they cause MS in susceptible people or any of the other implicated diseases, often take hold after a virus infection: in my case 'flu just before the MS became progressive. This led to a mild adult onset asthma, now gone.

Sarah

I take 100 mg of Minocycline twice daily. I persuaded my GP of giving a prescription for a 2 month supply. He will not, however, give me a prescription for the other med, metronidizole. This is needed according to Sarah's posting. Sarah's postings are in harmony with the Vanderbilt team.

I currently do not have a neuro. My faith in these specialists have been severely undermined. I truly hope they are some decent, open-minded neuros out there. I do not need a list of many in Colorado. One will suffice.

If any knows of a neuro that supports treating the MS as an infection, please let me know. I am willing to travel outside of Colorado for the first initial visit if I can have most of the future consultations over the phone.

Thanks and looking forward to some feedback.

Wilson,

Do you really need a neurologist to oversee the antibiotics? Could you perhaps just find a friendly family practitioner, the sort of person you see for everyday things. You could give him David's pages, including the two pdf files detailing the treatment and the research. The letters after his name show that he is a bona fide specialist, and the doctor would be quite free to email him if he has any questions.

Then, when you go for your next MRI and neuro appointment and he comments on how well you are doing, you can tell him why!

Perhaps it isn't so easy in the US, though, but have a think about it.

Sarah

Wilson, I would like to add to what Sarah just said (based on what she said much earlier. ) If you are taking the Minocycline, you don't have to hurry to take anything else. The bacteria is suppressed and is no longer causing damage. Lesions should be healing, according to whatever timetable is natural for your body.

If you kept on taking Minocycline for years, eventually all the bacteria would get flushed out, the metronizidale just hastens the process. Furthermore, as you no doubt know, Minocycline is very safe. Millions of people have taken it for years at an end - it is often given to help heal acne and people just keep on taking it forever.

So it is doubtful that you will have problems with the drug itself and hopefully your MS should also be put into semi-permanent remission for as long as you keep on Minocycline. I would speculate that you also had Chlamydia pneumoniae infections in other parts of your body, which are now also getting better. The other improvements are probably useful ammunition in persuading your doctor to continue giving you prescriptions for Minocycline.

When the time comes for your next MRI, discuss the results with your radiologist yourself and decide for yourself whether it is working or not.

Hello Wilson!

At the risk of sounding like a Byron and Sarah double act, I would just like to reiterate what he said about C Pn infections in other parts of the body, especially with regards to your back ache. David has found that several of his patients being treated for various C Pn infections have had long term aches and pains in various parts of the body, often just put down to age or whatever, which readily clear up. I would have mentioned this before, but wanted to see if the pain stayed away.

A note of caution, though, you do need to stay on the minocycline for at least a year to avoid things just slowly returning. If you give those three papers I suggested in the 'Regimens' forum to your GP and tell him to email David if he is unsure about anything, I would hazard a guess that you will eventually amaze your neurologist.

Take care,

Sarah

PS: The three papers are as follows:

http://www.davidwheldon.co.uk/ms_treatment.html

http://www.davidwheldon.co.uk/cpn-treatment.pdf

http://www.davidwheldon.co.uk/cpn-ms.pdf

The first details his treatment of me and my response, the second is a regime of treatment, where doxycycline can just be replaced with minocycline and the third is a resume of current research.

It has been mentioned in many of the info sources on using antibiotics for treating MS that the window of opporunity for successful treatment is narrow. Is this simply because the accumulation of irreversible disability without treatment? Or is this a more complex issue... such as infectious agents becoming too prolific in the body after time. What are the theories? I didn't see specifics in David Weldon's papers.

Just caught me in time, before going for dinner.

'The window of opportunity is narrow' means that the longer one has had progressive disease, the less likely it is that there will be a successful
outcome. It is not known exactly why at the moment. This may be a complex situation. It may be that the repetitious damage following myelin decay actually produces a true autoimmune myelinopathy. However, at some point in very late PMS the disease progression often stops. This may be because the organisms are now few - the immune system has won, but with severe collateral damage.

Against this, antibiotics like doxycycline, minocycline and roxithromycin may be trialled because of their powerful immunomodulatory as well as their antichlamydial powers.

I must have had progressive disease for about three years and RRMS for much longer, in a minor form, yet I responded straight away. It is always worth trying even if you have had progressive disease for much longer, because the longer you leave it, the less likely it is to be successful. If you don't try it, you will never know.

Sarah

Please check the latest story on the front page where researchers have just linked bacterial infection to Crohn's disease. This could be huge.