Multiple Sclerosis

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Multiple Sclerosis

Personality Changes in Multiple Sclerosis

Personality changes in Multiple Sclerosis


I first put up this page< two years ago, but I have made substantial changes to it. Please feel free to comment.



Vanderbilt Referral Required

Diagnosed with MS in July after 3 years of symptoms.  Not taking DMDs, just LDNi, NACi, NAGi and Vit D and fish oil.  Progression has increased in last 6 months and I'm interested in ABXi.  Contacted Vanderbilt about 3 weeks ago and was told I neeed to get a referral from my treating Neuroi before they will see me.  My insurance doesn't require referrals so I'm at a loss to understand why they're asking for one. Can anyone who has beeen seen at Vanderbilt explain? nfslg

26th pulse, plaquenil

3 days ago I completed the pulse. I did 5 days, 3x500mg metroi with no problems just after the last dose my stomach started to feel uncomfortable and my hips started to hurt more. I existed as if not on the pulse just on the first day I did less work at home. During the pulse I was even in my cottage a whole day. I had never gone to the cottage before during pulses .

LDN and stopping CAP

I have read several times here that the problem to stop the abxi is because of the lack of immunomodulation when stopping doxyi. I got the idea if LDNi can help with the immunomodulation. It has immunomodulatory properties. I stopped taking it several month ago I can't remember exactly when it was. I simply felt it did nothing for me so I stopped taking it naturally without planning. It seems doxy is enough for me. But I may come back to it in the future when I am in the point to stop doxy. I think it should work and it could be "a crutch" to manage the period after the stopping abxi.

Research: New clues to MS nerve damage<

A met the friend of an ms-er who had been in a wheelchair for 22 years and now, after using the supplement Isontronix opc3 is walking and biking again. This is all I could find that relates to his recovery except that the supplement is a combo of anti-inflammatories that is believed to strengthen the blood-brain barrieri..

***Volunteers Needed*** Possible Study of Bacterial induced CCSVI in Dallas / Fort Worth

I have previously posted my experience regarding a recent presentation from a prominent LLMD in the DFW area. He stated that they are trying to conduct a study regarding the possible CCSVI induced MS (and others ) caused by bacteria and how to treat it.

I spoke with the Dr.'s office in the last hour to make sure it was okay to post this. They said yes but please be aware that the study needs to be approved by the IRB so they are in the screening only process at this time. The Dr's are looking to make this a major study. The Doppler screening is currently 1/2 price for the next 3 slots available only this week. Next week and on, the test will be full price.

Anyone else had these side effects?

Just wondering if anyone else experienced these side effects from antibioticsi:

Loss of sense of taste

Muscle weakness (a kind of rubbery feeling all over!)

Jaw weakness

Facial tingling

Clumsiness and disorientation

A kind of 'out of it' feeling

Back pain

I am currently taking minocycline 100mg twice a day and roxithromycin 150mg twice a day. Just 1 NACi capsule brings on all sorts of side effects, sore eyes, sneezing, running nose, etc, plus makes the above side effects a lot worse.

The muscle weakness is really scaring me.

An overactive bladder

What's that? I don't believe in something with no cause. And overactive bladder has no cause. But I think there must be some bacteria and bladder is lucky to be able to get rid of bacteria  in natural path. So the more often and the more urgent urination is the more bacteria are there and the bladder wants to get rid of it the soonest so a few meters are sometimes too far. 

From Here to There

Yesterday I had my several-times-a-year checkup. My doctor is ecstatic over my progress. He has been pleased almost since the beginning, but is now even more delighted.  

A woman's prerogative...

I started a blog a while ago then deleted the whole thing!

But after some kind words from an articulate bug I am re-starting my blog :\

I am a little scared by the lack of positive stories on here, and the number of people who are still on an antibiotic protocol years after starting.

Am I clutching at straws?

Since starting antibioticsi I have had glimpses of hope that I am not sure are real, and a lot of negative reactions that are really scary. 

I can't really write at the moment, my head is not in the right place.

Family reunion summarized by my son on his live-journal

Rocky Gap Golf Resort
This month I spent a couple of weeks in Maryland with Mom and Dad.  My maternal grandparents flew up from their home in Florida.  Then the five of us drove to the Cumberland Mountains, where we were joined by some of my mom's family from New York. We checked into our rooms at the Rocky Gap Golf Resort< in Flintstone, Maryland.

International genetic research into MS susceptibility

My little ladybug antenna have been wiggling furiously.  I am starting a new thread as I don’t want to intrude on Myra’s thread Melbourne Treating Doctor for Cpni<.


More Vitamin D validation

If this is a duplicate of something on the site, please let me know and I'll remove it. Found this in Lab News Daily today...


Have others found this treatment such a rollercoaster?

I felt great yesterday, my kidney and liver function tests came back fine, my dizzyness and nausea seemed to have calmed down and I had more energy.

Today I am having extreme muscle weakness, even chewing is hard. I have pins and needles all over my head and face, I am extremely tired and anxious, and have spent most of the day in bed. I seem to be able to sleep for 14+ hours a day. I don't know if this is the treatment, MS, depression or some sort of sleep addiction!

The creepy-crawly feeling on my face is quite frightening. I am now wondering if I should go back on the Copaxone just to hedge my bets. I never felt that it was doing much but I am really scared of going into a downward spiral.

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