Continued Progresson on protocol

A forum for the discussion of antibiotics as a potential therapy for MS

Continued Progresson on protocol

Postby PattiD » Mon Nov 28, 2005 9:37 pm

My husband has been on the protocol about 6 weeks, and his progression seems to have increased. His walking seems so tenuous, and his balance has deteriated more. He is falling more.

He quite the Copanxone that he felt was not doing much when he started the protocol. He finished his first flagg pulse last week.

We are trying to stay positive, but we are fearing this progression will continue. Did anyone have this difficulty walking when they started the protocol? Did it turn around at all? I know it did for Sarah, but anyone else? I keep thinking (hoping) it will get worse and turn around.

His neurologist wants him on Rebif, but he does not want to do that if possible. Any thoughts?

Thanks-PattiD
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Postby SarahLonglands » Tue Nov 29, 2005 4:14 am

Patti, you might do better asking this on CPn Help.org, rather than tucked away as a new post in antibiotics here. I think you will get more replies. What I will say is that many people who have started the Stratton/Wheldon protocol do report getting worse before they start to get better, whether on flagyl or not, but you obviously can't just take my word for it.

I'll copy your letter now and put it both in the Regimens section here and also on http://www.CPn Help.org, because I am in the UK and you are in Alaska, so you might get a reply before you are even awake.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby yguner » Tue Nov 29, 2005 5:56 am

Hi Pattid,


I was not able to walk when i started the abx treatment but my ppms progression stopped after 3 months with the treatment.


Guner
On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)
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Postby gibbledygook » Tue Nov 29, 2005 6:39 am

Patti,

Hi, I do hope that things are not too frightening for you and your husband.

When I started the protocol nothing very much happened for a while and then my walking got very much worse before it got surprisingly better than it had been before starting the antibiotics. Then after taking flagyl once more the walking deteriorated and I'm now roughly speaking a bit better than I was when I started the antibiotics in Feb/April 2005.

My ride on this has been very much up and down but I would say that after 7 or 9 months (I started with internet ordered antibiotics so am not sure whether these were genuine meds or not) on antibiotics the trend is for neurological improvements.

I hope that this offers some encouragement. I would definitely recommend that people try the antibiotics and the N acetyl cysteine for a year but that they should expect to get worse before they get better. That has certainly been the case for me.
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Postby kc » Tue Nov 29, 2005 7:40 am

Patti,

Hi. I have been on the protocol since sept 12th of this year. I knew I had to start slow, meaning like just the doxy first then added the zithromax. If I go too fast I have terrible die off where my walking gets soo bad and I cannot even think.

But I can tell good things are happening. I have not even done a flagyl pulse yet because I am waiting for 6 months so I don't feel like I am dying.

Also, when the die off gets really bad I do extra vitamin c. I mean like up to 10grams a day because that binds with the endotoxins that are being released and it makes you feel better. Have your husband try it.

keep the faith, you guys are on the right track.

kc :D
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Postby natgas » Tue Nov 29, 2005 9:42 am

Hello Patti,

I just finished my first pluse of flagg and nothing earth shattering so far but give it some time. We didn't get here overnight it may take a some time before you see any forward progress.

I was DX w/ PPMS and I'm a 8-9 on the disabity scale so the only way to go is up. Ask your/most any nero what you read on this site and CPn Help's site is unheard of cause there is no cure for MS, right! There are alot of folks here that can say that is BS.

Are you folks in the energy business up in Alaska?

Wishing you the best and keep the faith.

Roy
The hurrier I go the behinder I get....
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Thanks for your enouragement

Postby PattiD » Wed Nov 30, 2005 10:00 am

We were not expecting the abx as a quick fix, but were not prepared to see a visible progression as quick as we have. Not only is his walking deteriorating, but his hand dexterity is declining rapidly.

I am more hopeful that the abx will help him than my husband is. In the past 3 years, he has tried everthing available with no improvement. His boss asked him if he was planning on retiring on disability yesterday. All of his dreams seem to have disappeared, and he is very frustrated that he cannot perform even simple daily tasks.

Do any of you have any suggestions for me? I am miserable living with him. We are going to counseling, but it does not help much. Thanks for listening.
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Two years ago....................

Postby SarahLonglands » Wed Nov 30, 2005 11:26 am

Two years ago I had started the abx about three months previously. When I started my right arm was a useless lump held against my waist. I couldn't do anything with it, which being right handed made things very difficult. I couldn't even do up buttons without struggling for ages with just one hand. Things weren't much better three months on. Now, though, I have improved so much that I noticed only yesterday that I was now using my right hand in preference to my left for beating up omelettes and that sort of thing. Also hitting my husband hard on the head when I saw a mosquito about to bite him!

If he is declining that rapidly from the MS, like LifeontheIce and me, he should manage to make tremendous recoveries. This time two years ago, though, I was crying in frustration because I couldn't tie my boot laces or do up the buttons on my nubuck jacket at all: they were far too unforgiving. Someone said "Be easy on yourself, buy outer clothes and shoes that use Velcro fastenings." Great, I wanted to wear my nubuck jacket and lace up ankle boots, not miles of velcro. The next year I could.

Nothing is ever guaranteed in life, so all I can really say is stick with it for at least six months, probably a year, before giving it up. You were saying that he wanted to stop and go onto rebif, but this certainly won't stop progression. There is no reason why he shouldn't do both, though, for that extra little bit of immunomodulation. He might also care to try LDN and/or statins, but as an addition not an alternative. Several people do this also. So do try to get him to stick with it: you have nothing to loose and much to gain. If he is depressed, melatonin might well help to give him a good night's sleep, without being addictive. This can work wonders.

Sarah :)
Last edited by SarahLonglands on Thu Dec 01, 2005 4:00 am, edited 1 time in total.
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby gibbledygook » Thu Dec 01, 2005 1:55 am

Patti, I'd try LDN, antibiotics and statins. Just to be on the safe side. It might sound rather unsafe to try all three but I reckon when the disease has started to gallop you have to gallop with it for a while until it calms down. These largely safe drugs could well calm it down. Best of luck, Alex
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Postby CureOrBust » Thu Dec 01, 2005 4:19 am

gibbledygook wrote:I'd try LDN, antibiotics and statins. Just to be on the safe side. It might sound rather unsafe to try all three ...

I'm on all three, and would not be the only one. Actually, I just realised I am on the max dose of LDN (4.5mg/night) as well as the max dose of Statins (80mg simvastatin).
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LDN resource

Postby PattiD » Thu Dec 01, 2005 3:00 pm

My husband's doctor is traveling and asked if I had a resource to show how LDN assist MS patients. Do you know of any convincing ones? He sounds open to prescribing it if I can give him some info.

I looked at the Library of Medicine-nothing. The UK MS Society page questioned its use. Thanks for the info.

Patti
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Postby CureOrBust » Fri Dec 02, 2005 3:18 am

http://www.lowdosenaltrexone.org/ldn_and_ms.htm
http://www.remedyfind.com/rem.asp?ID=4393
http://www.remedyfind.com/hc-Multiple-Sclerosis.asp

hope this helps, others would know some more links.

The other thing to point out to him is the low likelyhood of negative effects with such a low dose.
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Postby Arron » Thu Dec 15, 2005 12:37 am

Patti, wishing you all the best-- and congratulating you on keeping your doctor's closely involved. To head into the experimental treatment realm is a major risk and having medical supervision is critical.
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby MacKintosh » Fri Dec 16, 2005 1:14 am

Patti - Contact LifeontheIce. She is a physician (and I believe - but am not positive - she is on LDN, as well). Regardless, she can give you sound advice on it. MAcKintosh
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
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Postby MacKintosh » Fri Feb 10, 2006 11:30 pm

Patti - What's the latest?
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
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