About

 

As I write this for the new site it seems so long ago that I was diagnosed with Multiple Sclerosis. While there were signs before the one that resulted in my diagnoses the diagnosis symptom ultimately became crippling. The solu-medrol did not help and it took months to recover. Certainly plenty of fear and uncertainty of what the future held, probably common among most MSers. The length of time to recover made me wonder if it was primary progressive. Heck I still standby my assertion that MS is not a disease but a syndrome, and this further leads to despair and frustration.

As I am sure with many the MS continued to get worse. My neurologist at the time was concerned at my relapse rate. He ordered a $1000 test from Athena to see if I had antibodies to the Rebif. (Athena billed the insurance incorrectly and I could not get them to fix the mistake. Now their is a billing cost dispute. Just perfect.) No antibodies were found and there was a discussion of changing medications, but that did not happen.

Fast forward a few more years and I finally paid attention to the response I got to the MS Rash. That was certainly a blessing. With a lot of work I got the necessary blood work that showed I had Lyme, the rash was Bartonella. Tracking down a Lyme Literate MD (LLMD) was a challenge but we did find one. I started a treatment course of IV antibiotics for 3 months out of town. I return from out of town to have seizures; Lyme and Bartonella both carry an increased incidence. Seizure drugs are nasty and one attempt to pull down the dose shows I still need them. Fun. Currently I continue to see the new LLMD who focuses on oral antibiotics. As a quick side note I never remember being bitten by a tick nor did I get a bulls eye rash. It is only by reversing back through symptom history that the tick bite happened in 2001 on trip to Pennsylvania.

As I ponder where I have been and how far I have come I am amazed. I have not had any new problems since beginning treatment, other than the seizures, and have been slowly getting better. Considering I was originally misdiagnosed and the MS treatment was making me worse this is amazing. There is more ground to cover and by the Lords grace I am confident that I will be done with all of this.

For those curious as to why I continue to tag my posts MS. Due to my view of MS being a syndrome and my Lyme is neurological with lesions I meet the criteria for MS.

 Posted by at 7:00 pm

  11 Responses to “About”

  1. Hi there. Just came across your blog and it’s been really helpful to hear about someone else’s journey with Lyme and natural treatments. Based on your posts it sounds like you’re intelligent and educated. Ive been looking everywhere for longitudinal evidence of what treatments work and which don’t. I was bitten when I was 18 and aside from a really bad flu the week after I pulled an engorged tick off my leg, I had no strange symptoms that made me think I had something chronic lurking. Flash forward 8 years and it hit me like a ton of bricks. Thought i would be disabled but then it got manageable once i ate raw and gluten free, did yoga and saunas. Symptoms would come and go, the most annoying being terrible migraines and forgetfullness. Its tough when ur smart and competant most days at work but have an off week. People start to question you. Had no idea what it was until my husband thought he got bit by a tick and I have a chance apt with an llmd. Anyways, I’ve done a ton of research on treatment and I am starting to go to an llmd I trust, not one that has a hammer and sees everything as nails. I haven’t started ax yet but have been on naturals, infrared saunas, and accupuncture for 2 months now. I got worst before I got better. My regiment is arteminisin, grapefruit seed extract, coq10, magnesium, multivitamin, 2g of salmon fish oil, sometimes garlic instead of gse, and Ayurveda and a gse or garlic with a coq10. I’m adding mimosa and knotweed to the mix in a couple weeks because I feel my heart skips and neck pains slowly reappearing but not as intensely. Since my body was able to hold this bug dormant for so many years and my western blot shows a crazy high amount of antibodies for flagella, I think I’m prone to biofilms and cysts. I am also really interested in treatments that cross the brain blood barrier since the cns seems to have been affected. Anyways, I would love to know how you are, what’s worked for you and other tips we can swap. Also any tips about insurance or work is also appreciated.

    Vk

  2. My experience has been almost completely with antibiotics. I have dabbled in other stuff, but not to the point that it was serious. LymeLight could probably give some better advice: mylymediary4me.blogspot.com

    Since I went with Abx, and BCBS was pretty open, everything was covered. Unfortunately I can’t offer much advice since it just worked.

    Good luck with your LLMD!

  3. Hi Erik,
    Thanks for your blog. I’m recently diagnosed with MS and friends have encouraged me to make a blog myself. I was hesitant but i made one. I hope you don’t mind but I linked your site to mine for further info for my friends on MS and insights on the world Im just entering.
    Please link to mine if you think its appropriate. Thank You and Much Luck in your day to day.
    http://criscare.org/blog/
    Cris Basham

  4. If there is anyone that might be able to talk to me. My legs are numb and am wondering if it is possible to recover sensation?

    Maia Marie

    maia.calloway@msn.com

  5. Not a lot of details in your comment, but the short answer is yes. For more details you can look at my posts tagged with numbness: http://blog.thesmithlife.com/?tag=numbness

  6. The one symptom that doesn’t seem to go away are the twitches. Random and mostly on my right side. It makes me question……is it Lyme? Some days are better than others. I start to second guess Lyme and consider MS and should I be seeing a Neurologists? Seems like some lit connects the too. Do you feel like they are two diff. things happening to you or one in the same?

  7. I have MS and am interested in lyme connection

    • Chris,

      I work for an LLMD here in Palm Harbor Fl and I wanted to share with you an amazing video of a 14 year old girl diagnosed with MS. She came in a wheelchair a few weeks ago and left running in the parking lot in 42 days.

      Share it with everyone if you like. This doctor is truly amazing.

      Thanks,

      Matthew

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