This Is MS Multiple Sclerosis Community: Knowledge & Support

10/05/05
Diagnosed with MS after hospitalized for sudden onset bilateral 'gaps' in vision, spinal tap positive for oligoclonal bands, MRI showed 20 lesions on brain, 3 enhancing, one on spinal cord)
Methylmalonic Acid level 575 (normal 80-220)
Negative for Hughes, Lupus, Lyme, Sjogrens

10/10/200505
Started Best Bet Diet (Ashton Embry)
Started Supplements: Multi vit (GNC), Multi mineral (GNC w/ many minerals inc. Ca 1000mg/Mg500mg), Ultra Pure Fish Oil (EPA 2200mg/DHA 750mg), EPO 1-300GLA, CoEnzyme Q10 200mg, Alpha Lipoic Acid 200mg, Vit C 3g, sublingual B12 5000mcg, Vit D 2900-3600iu, Vit E 800-1200iu, Acetyl-L-Carnitine 500mg, N-Acetyl-L-Cysteine (500mg twice a day), Concentrated liquid berries (Very Berry), Gingko 240mg, Lecithin 1200-2400mg)

10/26/05
Started Copaxone Injections (site reactions, swelling, itching, redness, lumps and bruises)
*Stopped Copaxone end of January 2006

11-12-05
Started having bilateral, symmetrical tingling and weird feelings on both arms from elbows down, and both legs from knees down. No muscle weakness.

12/22/05
Started LDN, difficulty sleeping, vivid dreams.

2/15/06
Started Doxycycline 200mg /day

2/23/06 Upped LDN to 4mg at night - no problems or adjustment side effects at all

3/3/06
Started Azithromycin - mild fluish symptoms off and on, tolerable.

So glad you are so sensible and keep good records. Please look at www.CPn Help.org. You will find many there with such symptoms. You are wise to begin early.

Rica

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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.

Wow. You seem to mirror much of the same path that John and I have traveled on since Jan 2005. The worst part is it is hard to tell where the improvements stem from. John like you is also doing great right now. I have noted with Xmas snacking on fatty foods and chocolates he has needed a few naps. I hauled him back on track early (yesterday )as initially I said I'd let him have a week off but it makes me nervous when he needs to nap in the afternoon. Always on my mind is a relapse we can't recover from. You see I tend to do the worrying for John and he agrees to do as I say. Keeps him stress free most of the time as long as he believes I'm in control of it all. Looking forward to your post. I keep a journal as well so I can try in the future to see where the improvements stem from.

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John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.

Hi there Mamahawk

Sorry that circumstance has meant that you find yourself here. Given the unofrtunate MS, this is a great site to be part of.

You seem very thorough! I am also on LDN and the swank diet - one of which stopped the tingling and the twitching. I am now on the abx (since Aug 05).

Good to hear that you are feeling much better now. I hope it stays that way for you.

Welcome to the site.

J.

Jaded - Ummm, yes... 'thorough' would be a polite word to describe my reaction to all of this. Obsessive, anal, compulsive would be more accurate maybe?
I guess I tend to like to feel in control and for the past few years, I definitely have not and my body betraying me like this just pushed me right over the edge!
I think that is why the diet is no trouble for me to stick to... it gives me something I can have control over to make a difference. Even if they are wrong and the MS is not helped by food - it helps my body as it is a ridiculously healthy way to eat.

You say the tingling went away - how long did it take?



Rica - so are you recommending starting the antibiotics even when a person is asymptomatic? I'm afraid of feeling worse - - I read about the reactions from the AB's and getting worse before getting better, etc - Just wondering if by building up the body nutritionally and with endorphins (LDN) that the body wouldn't fight the cpn if that is indeed the cause here...??


Melody - John is very lucky to have you! I hope he continues in this good health!


Thank You~~

You ask good questions.

We who are on abx come with a very wide range of disabilities from almost non-existant to almost quadriiplegic, the main common thread for those who have been on it long enough to see improvement, have.

The premise is that our disease is caused by Chlamydia Pneumonia, a bacterium not even discovered until 1986.
Some, but not many, were tested for a titer, but most are doing this "empirically" based on symptoms. I was not tested and am in my 16th month and have made such a dramatic improvement that I am now not even taking my Avonex. As far as I know, no one has ever stopped taking Avonex because he/she did not need it any more. Now I take only the Dr. David Wheldon regimen with consultation with Dr. Charles Stratton.
You need to go to www.CPn Help.org and do some reading. It is definitely an advantage not to wait, before this nasty thing gets an even better grip. With me, it was 9 years. This is a very difficult bug and given the alternative, not that hard.

Rica

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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.

Thank you Rica - will do more reading there....

Mamahawk

It's difficult to say - the tingling stopped shortly after I started the LDN (a month, I think) but I had been on the Swank for about 2/3 months by then. Whether it's the endorphins or lack of sat fat, I can't say.

I have had no major symptoms being on the abx, although I do have a cetain amount of disability, which is why I decided to try it - I don't want any more!!!

J.

I updated my regimen in the first post in this thread.
I'm on the antibiotic therapy now and really feel the best I have in years. I do have fluish side effects that come and go sporadically since starting, but nothing I can't handle.

Breakfast w/vitamins/supplements + NAC + acidophilus + fish oil
Lunch w/antibiotics (Doxy 200mg and Azithro 250mg MWF)
Dinner w/vitamins/supplements + NAC + acidophilus
Bed - LDN

I am not sure if it is the diet, the LDN, the acupuncture, the reduced stress, taking better care of myself, the antibiotics or all combined or WHAT... and I really don't care LOL but I feel really, really good... like I am on the right path, and regaining my health.

Flagyl will start next month. A bit nervous on that one....

Still having tingling in my feet and hands sporadically, but all else is normal.

Will post if anything changes and after the first Flagyl...

Mamahawk,
I am right behind you as far as abx goes, I am on the supplements and I see my doctor Monday snd I will take my husband with me for support.
I am impressed with your quick response in fighting this disease - as I also have been on Swank for 10 years and I do not know if it helps MS but I do feel better when I eat well.

LDN - I have been on for 2 years and it really has helped - no progression on MRI over two year period.

Copaxone - I was on for 1 year, 3 attacks (2 more than my usual) and I still have injection site bruises - why did I stay on that so long? I also had 4 cavities the year I was on Copaxone

I have had this for over 10 years and use walker all the time.

I will start a thread of my progress as soon as I get my hands on some doxy.

Rica - Do you know if CPN show up on the people who had the titer blood draws? Just curious as my doctor was checking if I had 1. A current infection and 2. A previous infection
I am not expecting either to show up but it will make my case easier if there is a chance that it will.
I still need to do more reading before my appointment Monday.

Hi Wiggy -
Yes, I jumped right online (even when I couldn't see without the font being HUGE) and started researching as soon as I got home from the hospital. I researched obsessively for the first 3 months after diagnosis.

My uncle has had MS for as long as I remember... and has been bedridden for the last 20. That is my "picture" of MS, so understandably, I was petrified... and determined to regain my health - or at least do every single thing I could to prevent disability.

I have 3 children and a full and active physical life. I would not handle his kind of life well at all.

I am still very afraid, but "trying" and being proactive helps me feel some level of control over life.

Great Luck to you at the Dr. ~~

Hi again Wiggy

Very few of us have been tested for Cpn and those who have have ranged from high to none. We are doing this "empirically" based on symptoms; some have MS, some CFS, some RA, and some Fibromyalgia. We have had 4 people whose high blood pressures have dropped dramatically and unexpectedly. It will be seen why this has happened in the future. This is not a silver bullet but a very inportant discovery and a well thought out protocol for a very nasty bug causing havoc.

This protocol is an incredible trade-off for those of us who have a set of symptoms probably caused by this bacterium. We can "pop a few pills every day" and get out from under an enormous number of these spirit-crushing burdens. I wish the people who DON'T do this would say why. It does not make sense to me not to do it if one has MS. It is not very expensive and IF YOU DO NOT HAVE THE BUG YOU PROBABLY WILL NOT REACT AT ALL.

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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.

Well, since my last post I have had ZERO episodes of tingling. Absolutely NO symptoms of anything physically or mentally wrong with me.
Unbelievable energy....each week, I feel better than the previous - it is just exciting to KEEP getting better, and kind of sad to see I didn't even realize how little I was settling for out of life before.

I am on Doxy 200mg/day, Azithro 250mg mwf, LDN 4.5mg every night, and the same slew of supplements/vitamins. Flagyl will be started in April or May.

I am following the Best Bet Diet for the most part, was VERY strict for 6 months on it. My Allergy tests (prick test and injected) all came back negative for all foods... so I have recently added wheat a couple times a week and this week had some beans. My weight kept dropping and food was tasting like cardboard (still does somewhat - I REALLY miss cheese) so I am experimenting with adding in some foods that are allowed on the Swank diet.
I keep my saturated fat between 0 and 15g, usually around 5g/day.

The biggest thing for me is my return of energy - I worked in the garden yesterday for **3 hours**... and could have gone longer but the family thought they needed dinner - the nerve! lol
I used to work like that, years ago.... but last year, before I was diagnosed, after 30 minutes I just was wiped out. I feel better physically than I have in at least 3-4 years.

The loss of the tingling is a welcome thing.... and my complexion is so nice now thanks to the abx....

So - Diet, antibiotics, LDN - I will continue to do all 3.
MRI in October - I want to see those 20+ lesions disappear.

Will continue to post any changes or developments.

Another success story! Isn't this just the BEST? Congratulations!

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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

Mamahawk

I am so, so happy for you!!! Not to be a wet rag - please remember all this when flagyl time comes!

Rica

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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.