My "MS" updated

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

My "MS" updated

Postby Cleremond2000 » Thu Nov 12, 2009 1:54 pm

Hi all...

Its been a while since I posted. You'll find most of my posts in the Copaxone forum, but I'll most likely be posting here from now on.

I'm 39, Male, 5'9", 155lbs, U.S. Army veteran turned IT computer geek. If you read my previous story, you'll discover that I was Dx'd with RRMS in Feb of '08. For the prior two or three years to that, I had slowly began to have gait issues, revolving pains in my joints (knee, back, and neck), weight loss, balance problems, borderline drop foot in both legs, and acute onset fatigue if I was on my feet for any length of time.

After MRI's and an LP my neuro dx'd me with RRMS and started me on Copaxone daily injections.

I was NEVER satisfied with the dx. Namely because I had NEVER suffered what I'd call an "episode" or "relapse" that is usually associated with classic MS. My symptoms were just a steady reduction in my physical ability to walk normally. I have completely lost all ability to run or jog and will fall if I try to. Its tough because I used to be a tremendously active person (Skiing, swimming, hiking, all manner of outdoor activities). I'm only good at sitting on my duff or sleeping these days.

In Nov of '08, I began digging into alternative therapies cause quite frankly I hated giving myself Copaxone injections each day. I discovered Low Dose Naltrexone and convinced my neuro to rx it for me in Feb '09. I rapidly improved over three to four months, only to begin to get worse. Researching this revealed this is a classic reaction to LDN for those that have Lyme disease....start LDN, get better for a couple months, then get much worse.

On the LDN Yahoo Newsgroup, I made contact with people who had my EXACT disease progression who were dx'd with MS only to discover that Lyme was causing their issues.

I decided to treat myself as if I had Lyme, and over a two month period, self treated using Samento and Cumanda natural herbs from Nutramedix. 15 days into my Samento use (I had worked up to 15 drops/2xdaily at that point) I had a pretty sizable herx reaction. I felt like I had been hauled out behind the tool shed and beaten with rubber mallets all over my body. It was pretty harsh and lasted for nearly 3 days.

I took this as an indication that I certainly had some kind of systemic bacterial infection. I opted to have myself tested at IGENEX. My IgM was POSITIVE, showing bands 31 (++), 34 (+), and three others. My IgG was IND, despite band 34 (++) also showing positive on that test.

I think in order to get a positive result (if you DO have Lyme), you have to already be TREATING it successfully. Something about the human body can't develop the correct antibodies in any real amounts unless you are already killing the bugs off. I had been tested for Lyme before with an ELISA that had come back negative. Its been shown that the live bacteria hides too well and the body can't generate enough of the appropriate antibodies normally, but if you are killing them, the carcasses can't hide and your immune system can then be developing the correct antibodies that will show up on the test.

My advice to anyone that has been diagnosed with MS, Parkinsons, ALS, Alzheimer's, or any other auto immune disease to have their doctor immediately prescribe a 4 week course of doxycycline and see if they herx, THEN get tested at IGENEX labs in California. They WILL check bands 31 and 34, where other labs will not. Very important that those two bands be checked since they don't cross reference to any other kind of bacteria and are specific to Borellia (The bacteria that causes Lyme disease).

I took my IGENEX results to an LLMD here in Dallas, Texas two months ago who, after seeing my results, immediately moved me to the top of his waiting list and I got to see him that week.

In addition to my LDN 4.5mg every night, he has put me on Doxycycline 100mg 2x daily and Amoxicillin 500mg 2x daily. He has also prescribed Nystatin to combat yeast and Lyrica 50mg at night to help with the cramps and spasms I sometimes get. I also have an Rx for Baclofen, but I haven't filled it yet.

My first 4 days on Doxy were pretty horrible (refer to the rubber mallet beatings described above).

So far I've been on this rx for 1.5 months.....and I certainly feel worse and am having pronounced difficulties walking. I'm chalking it up to "Its gonna get worse before it gets better".

I will say this....our medical system is FUBAR'd. If it wasn't for my tenacity and not blindly accepting my neuro's dx of me, I NEVER would have discovered my real issue. I would just have this mysterious disease called MS that has no cure and is basically a prolonged death sentence according to the medical establishment.

Now I know what I have and it can be treated and cured.

I watched the movie "Under Our Skin" and it made me furious to know how "profit" driven our health care system is and the conflicts of interest that are one step short of criminal corruption.

So...my big question....

Has anyone had success treating their "MS" (read as Lyme + co-infections) using these abx and if so, how long was it before you began to feel any improvements?

I'm willing to share my story with anyone. So if you, or friends, loved ones, co-workers or what not is suffering from MS or another autoimmune disease, don't hesitate to contact me. I'm making it my mission to help as many people as I can with getting the right information. You will NOT get the whole story from your neurologist. So...let me know if I can help.

Sorry this is so long.....if you made it this far....I applaud ya. 8^)

- KenC.
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Postby agatha » Mon Nov 16, 2009 10:50 am

Hi Ken

What an interesting story - I can't answer your question about Lyme but I hope things go really well for you - let us know what happens next.
Agatha
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Postby SarahLonglands » Tue Nov 24, 2009 7:26 am

Ken, I was treated for my MS with doxycycline, roxithromycin and pulses of metronidazole but on the assumption that I had a chlamydia pneumoniae infection, rather than lyme. Cpn is the main bacteria being investigated as causing MS. Neuro-lyme can appear very similar to MS but the good thing is that both infections will respond to the same antibiotics.


I was tested for both pathogens about three weeks after starting treatment but the lyme tests came back absolutely negative. I did, though, have definite relapses before by MS became progressive after about twelve years.

I wish you well,with your treatment!

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 whyRwehere » Sun Nov 29, 2009 9:14 am

Ver y intersteing story to me as well. You sound much like my husband...I think his weight loss was caused by the copaxone, and he hasn't had any since stopping in 2004/5? well, he's not fat, but he isn't just bones anymore...
keep updating here!
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Postby Just_Me » Wed Dec 02, 2009 12:34 pm

Your disease progression sounds like me. I hope you don't mind, but I printed your post and am sending to to my GP in the hopes he will start me on abx.

Thank you for posting your story. I hope you continue to improve. Please post updates.
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Postby Cleremond2000 » Tue Jan 26, 2010 1:08 pm

Well....its been another 2 months...

My LLMD had to take me off of doxy/amoxy because I had new MRI results in December that indicated I had a new active lesion in my neck and a new one in my brain.....both VERY small....but active.

He has instead started me on Minocycline since it penetrates the BBB into the central nervous system and can get at the bugs that way. Doxy and Amoxy don't get passed the BBB.

My ability to walk has continued to get mildly worse over time since beginning Abx.

The LLMD states that this is due to the constant healing crisis I'm experiencing as a result of killing the bugs. he said as these things die off, they release toxins that get stored in local fat cells....but since I'm only about .5% body fat, the excess toxins store in my muscle and nerve tissue.....cause the aching and neurological dysfunction.

He has also started me on a drug called MetaNX. This drug is made up of the core compounds that B6, B12, and Folic acid breakdown to in your body once they have been processed. They use MetaNX to treat diabetec neuropathy and they say over time it can help in the body's ability to re-meyalinate damaged neural tissue.

We'll see.

Is anyone else out there having any success with doxy, amoxy, or mino and feeling better as a result?


KenC.
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Postby SarahLonglands » Tue Jan 26, 2010 4:14 pm

The thing is, your LLMD is wrong abut doxycycline not passing the blood brain barrier: otherwise why else would I with very progressive MS have improved so much? My husband decided to use doxycycline because it does penetrate the CNS. I also used roxithromycin.


Interesting about the MetaNX though.

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 Katman » Wed Jan 27, 2010 10:10 am

Hi Ken

Fascinating story!

My abx regiment is much like yours but with the addition of Rifampin 600 mg - 300 mg bid. I am also on twice daily metronidazole. It has been five years and over four months for me on this and I continue to improve. Rifampin does indeed penetrate the BBB, but requires a good bit of self-discipline (as if the rest of it doesn't!), because of the time window involved in taking it.

You are correct in your knowledge that you will get worse before you get better, but if you cintinue, I think that you, too, will be a success story.

And thank you for your military service.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby Shaka » Tue Feb 23, 2010 8:58 pm

Hi Ken, I was first diagnosed with MS 6 years ago even though I always tested positive for Lyme on the Elisa and Western Blot. It took me a long time and lots of fights to get my first Doxy. Doxy was very hard on me stomach wise and herxing. They swithched me to Mino easier on my stomache. I finally saw an LLMD 3000 miles away who Perscribed IV Rocephin for 90 days. I got so much better after that saw an LLMD closer who kept me on oral amoxy. My next MRI showed almost all of my 11 lesions gone. MY MS Dr was shocked still would not admit antibiotics helped. I was better about 9 months got pregnant stayed on antibiotics threw pregnancey and breastfeeding to make sure not to pass Lyme to Baby. She has tested negative for Lyme and so far so good.

I stopped the antibiotics when I was done Breastfeeding thinking I had been healthy for over 2 years now I am good. 4 months later 13 New Lesions numbness from my waist down and feeling worse than ever. Drs where I live won't give me antibiotics so I go back the 3000 miles see original LLMD he says my Lyme he cured but I also tested positive for CPN and he puts me on Minocycline easier on my tummy, Azithromycin 3 days a week, NAC, and a Flagyl Pulse every month.

Its been about 6 months I havent had any new symptoms but alot of herxing. I am now getting ready to find a new Dr closer to home that knows about CPN. I am not truly convinced the Lyme is gone but I am going with what I got. I hoped that all made since it has been along 6 years.

Now I have a question for you. I have had 2 LLMDs tell me I should also take Copaxone and my MS Dr always forces the issue. Well today I broke down and took the Perscription I am just so scared of more damage to my walking and Copaxone seems to have few side effects. What was you experience with Copaxone?

Thanks for reading!
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Postby whyRwehere » Wed Feb 24, 2010 1:13 am

Shaka,
You may be asking Ken, but I just wanted to share my husband's experience of Copaxone. It wasn't good for him. He lost a lot of weight on it and he became allergic to it in the end....we didn't have this officially tested, but after the injection, he was getting the chest pressure thing, then he would start shivering and then he would break out in hives. This happened more often than not, so he stopped. Could have been exasperated by his lack of fat to inject into.
But everyone is different, it might go better for you.
Another thing, is that it didn't seem to make any difference in his progression.
Why
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