The people in the waiting room thought I had lost my mind...

Submitted by hdwhit on Sat, 2012-03-17 18:02

...but what else is new?

I didn't get a tutu, but I did dance into my neurologist's office as discussed in my blog here last year.  The other patients - none of whom looked any more disabled than I am looked at me like I was insane.  I just wished them a good day and told them I was happy that my neurologic problems were getting better.

The neurologist confirmed that I was continuing to get better.  Even though he/she will treat Lyme disease patients with long-term antibiotics, he/she doesn't buy into the idea of a bacterial cause for M.S. even though the evidence was sitting there in front of her.  Unlike most of the other patients, I am still continuing to (slowly) get a little bit better every time I visit. 




We have missed you!  And, as usual, congratulations on your continuing recovery.  I am getting better, too. 

Thanks for stopping by with a wonderful, and, as always, entertaining update.  A pox on all those short-sighted (blind?) neurologists!


3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

I love my neurologist.  As I said, she accepts a neurologic presentation of Lyme and is willing to treat it with long-term antibiotics - and then fight with the state about it - so even though she hasn't been able to make the jumpt to M.S. being caused by a bacteria, I won't criticize.  Besides, if I continue to do well, it's got to start raising questions.


CAP for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INH completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

I live in the most conservative medical area I think in the world, Richmond, VA.  No one wants to venture outside of what was done 50 years ago.  Well not totally, but there is much truth to that.   I worked at the medical collegehere and saw a lot of that and  KNOW this is not just an exaggeration.  In my quest to learn why I have been so sick for so long, I have seen far too many doctors and tests.  This year alone  I have seen 16 doctors and no one has been willing to take the bull by the hornes to give me a diagnoises, even though I just learned they have known for awhile now.  Thanks to one sweet doc, who let it slip that, "you do know you have multiple mycoplasma don't you?" and then was started to learn , NO, no one had ever told me that.  Plus two other doctors who hinted at it as well, I finally have answers.   BLESS my neurologist, who told me, "I have good news! Your neurological symptoms are just that, symptoms and not a neuro disease like MS or anything.  But you do have some other disease outside my field that is causing the symptoms and you need to find out what it is."  I began to ask if Multiple Mycoplasma could cause this, and before i could spit the whole thing out, he was shaking his yes and telling me what I should do next to get help.  Everyone of my specialists has been waiting for my GP to take action. I will cut this short and just say, that very unlike myself I had to really demand that my GP think out of the box and take action.  Now, I do not know how I will find another doctor to help me do the rest of what is needed here.  I know my GP will not.  But I have faith and great hope and know it will happen. So glad to hear your good news. Good luck and stay well. 

Oh, but don't you miss the national tour of ER waitimg rooms?  I'm guessing, NOT.

This is such good news!  I remember how rough things were for you.  Validation is a wonderful thing. Good health is even BETTER!

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Actually, the little hospital in the town where my father lives is having financial difficulties and could use me to pay them another ER visit, but that's the only part of it I miss.

CAP for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INH completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  


minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Your update is so wonderful to hear.  Might you say a bit about what symptoms of MS are better for you each time you go back and she examines you (or you report them to her).  It would help me to inspire some of my MS aquantances to give them some examples of someone who started this treatment about the same time that I did!   I have no MS dx so I am not so believeable it seems.   It is not enough that my life has become very functional again since I "only" had incapacitating CFS fatigue and sever brainfog!  Some of your specific examples of improvement might give a lot of encouragement.   

Thanks,   Louise

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

After the first exacerbation that was recognized as an exacerbation (now that I know what they are, I realize I had several beforehand that were not recognized), I had:

  • Optic neuritis
  • Inability to speak (without first consciously thinking about where to place my tongue)
  • Loss of fine motor control in my hands (including the inability to write a capital "D" so that I could no longer sign my name)
  • Inability to comprehend spoken language if it was spoken very fast.
  • Difficulty starting to walk upon standing
  • Foot drop (with resulting inability to climb stairs)
  • Confusion/inability to concentrate
  • Bowel/Bladder issues (simultaneous constipation and incontinence)

Everything has now recovered to some degree with the exception of my optic neuritis.  For example; I can talk clearly for about two hours, but after that my speech begins to slur again.  As a result, I have acquired a reputation for holding some of the fastest negotion sessions in our office.


CAP for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INH completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.