wanna try CPN.help pls

Hello,

I am from India, 23 years old. Recently diagnosed for MSi.I don't know what is inflammationi (MS), nothing happened overnight.I had problem of balance, walking difficulties and urine incontinence.My Doc(neurologist) asked me for multiple test including CFSi,MRI and put me on steroid for 5 days. Except urine incontinence, I am free from all symptoms. MRI shows few lesson in my brain and spine. Doc was quick to conclude it MS, asked me to start the medicine (Interferon, Avonex etc).

I am not ready to puncture myself through out my life and injecting poison. I am fortunate enough to come across this site.

Please help me. How should I proceed further from there on ?I would be more than happy to start Dr wheldon's protocol.

Samit

Before doing anything, read Dr. Wheldon's pages on MSi and CPNihttp://www.davidwheldon.co.uk/ms-treatment.html< 

This will explain the treatment and the rationale for the treatment.

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

Thanks Mack.I have read that one... Inspired by Sarah enthusiasm and Dr wheldon's perseverance.

I am confused between.. Should I go for cpni test or I start  abxi following Dr Sheldon protocol.I read somewhere even if the report comes negative,it doesn't  mean I don't have cpn. How could I be sure?Should I go for Lyme test too..?

Except for lession in my brain and spine all the reports came negative (CFSi,NMO). Should I consider it as MSi? I have approached few neurologist... They were very reluctant to accept that this could be cpn.. They  want me to be on medicine that will cost 1000$ a month.

Hope is the best thing.

Hi samit!

You a right; you are indeed fortunate to have come across this site.

At the top of this page there’s a “Getting started” tab.  Either click the tab or click this link:

http://www.cpnhelp.org/cpn_and_cap_overview<

http://www.cpnhelp.org/treatment_protocols<

Being in India is good in one respect in that you shouldn’t have much difficulty in getting hold of the medications if you cannot get a doctor to prescribe.

Just as is says in the link, start by taking 100 mg of doxycycline a day WITH FOOD, washed down with plenty fluid.   You may be interested to know, doxycycline is commonly used as an antimalarial prophylactic.  When I visited India, there were more than enough mosquitos to go around.  Like you, I have MS; if I lived in India I think I’d be taking doxycycline regardless.

Oh, by the way, this medicine is dirt cheap … so no one’s going to be making a buck on the back of your illness.

It’ll take you a couple of weeks or so to get used to taking that doxy pill each day.  During this time you should have started some of the supplementsi that are listed:

http://www.cpnhelp.org/recommended_supplements<

Being in India, one of those supplements you’ll already be familiar with: Turmeric.  Another that I take (from Ayurveda) is ashwagandha.

The 2nd antibiotic that you’re going to take is from a class of drugs called a macrolides.  You can have either 300 mg of roxithromycin every day or you can choose 250 mg of azithromycin 3 x per week.

I think that’s enough for you to be getting on with for now.

You say that you are free from all symptoms at the moment.  That is probably because you are “Relapsing, remitting” i.e. at this stage of your illness, you only have symptoms during a flare up.  If you allow you disease to progress, you will become chronic progressive – where there are no periods of remission.

You ask what “Inflammation” is.  Generally speaking, inflammation is just swelling – often a means of protection.  When it comes to swelling and inflammation of the brain & spinal cord, it’s generally a bad and damaging thing.  The purpose of doing this treatment is to stop these germs attacking your body and thus reducing the occurrences of inflammation.

You ask about “Tests”.  If you want to test, then take NACi and see if you get NAC flu.  Mind you, if I were you, I’d just get on and do the treatment.

I wish you good luck my friend.

Kind regards,

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Duplicate

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

For me, the medicine - Copaxone - would have been $1800/month.  I refused it.  That medicine will not heal you; it will only slow your progress, maybe.

Yes, you know you have cpni if the test says you have it.  But, if the test is negative, you might still have cpn that the test didn't find.  I started treatment long before I knew I had a positive test.  The treatment began to help me within a couple of weeks.  How long will it take?  It will take as long as it takes.  Don't be in a rush to end your treatment when you haven't even begun your treatment. Wink

I would start taking vitamin D3 and N-Acetyl Cysteine now.  Have you tried the NACi test? 

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

Hello supaguy,

Thanks for the whole lot of information. True, it's not very tough to get medicine without doctors prescription:) . turmeric, Ashwagandha there are lot more Ayurvedic supplement around me which m not aware of.

I shall start the abxi ASAP.

Hello Mack,

I didn't try NACi test yet. Thought of going for cpni test first.please advise what suits best.

Hope is the best thing.

Hello Friend,

Would you mind if I ask you how you are progressing with abxi? Anymore flare up??

Samit

Hope is the best thing.

Hello Friend,

Would you mind if I ask you how you are progressing with abxi?? Any more flare up?

Samit

Hope is the best thing.

Hi Samit!

Unlike you, my illness is not Relapsing Remitting; I was labelled as Primary Progressive ... which means there is no remission, you just go steadily downhill.

In taking this antibiotic treatment, I believe that I have stopped many aspects of progression; in particular, I think cognitive impairment & brain fog have been halted.  My biggest issue remains the unremitting muscle atrophy of my upper legs and in particular, gluteus maximus.  Due to that, my walking, stability and ability to negotiate stairs is now very poor.

It is a fact that the downhill journey of this illness is not linier ... and neither is the recovery.

Your thread mentions tests a couple of times.  Let me give you an analogy.  Imagine that you are in a burning building.  You can fight your way through the acrid smoke to get to the flame to find out whether it is really hot and whether it'll really burn.  See my point?

Get your ass out of that building and get yourself on the antibioticsi.  Those that start early seem to increase their chance of success.  Another question to ask yourself is this: what if you test for CPni and it were negative?  As an MSer, you will be very susceptible to trips and falls.  When your face is in the dirt, you'll have confirmation that this MS is real.  Consensus medicine has nothing to offer you.  The immunosuppressants they've offered you don't even promise you much.

Take the reins to your own destany.

Good luck.

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Mac is right - read - you have lesions in your brain. You need help with this - hope you do it. Linda

ThanKs supaguy,linda,Mack.

I am having acute knee pain.. It has anything to do with cpni or because of cold outside?? 

Samit.

Hope is the best thing.

Hello Samit, you have brain lesions and a neurologist has diagnosed you with MSi: he is more than likely right.  However, you have come to the right place if you don't want a lifetime of injecting yourself with things which do you no good whatsover: I know the theory is that they make your relapses less and further apart, yet I don't really know how they can be sure because some people relapse every month or so yet my relapses were never more than every couple of years at first and that was on no medication.  Everybody is different.

You have been given lots of good advice already so I won't repeat it all but I would suggest that you get started promptly because at your age you are lkely to be able to hit it quite easily.  India must be about the best place to be able to buy the abxi online.  PM me if you want any asvice as to wear to go. and I will look forward to seeing your progress................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thank you very much sarah ! 

Day before yesterday i was a kind of lost guy.Always looking for a answer Why me? What i have done?? I have just finished my college and then this MSiRUINED !!

Definitely i have regained my hope with the cpni family support.I will have my abxi very soon ! 


Samit.

Hope is the best thing.

Oh, another one! I developed MSi just after finishing my university studies as well, but the difference was that I ran away from the diagnosis, since there was nothing really that could be done in the 1980s.  I went lots of years without being too badly affected, though.

Do keep in touch and ask us any questions as you go along, though...........................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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