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^)