MY BATTLE WITH MULTIPLE SCLEROSIS

Hello everyone...I am a 33 year old female and Mom of 2. I got diagonsed with RRMSi about 3 years ago..my first issues began about 10 years ago, after a car accident. The pain started in the back of my legs. I was diagnosed with Fibromyalgiai then. The symptoms kept coming, fatigue, then vision problem (spotted), this would come and go...then throughout that time, my balance was lost. After 7 years of different Doctor's, MRI's, and people thinking I was simply crazy (including myself at times)...I prayed to God for an answer, opened the phone book and a name stood out at me for a Neurologist (name not important as he just helped diagnose me, then wanted to just fill me with toxic medications that made me worse)...he did a Lumbar Puncture and that is how I was diagnosed. I had to quit my occupation as a Nurse because it required standing (floor Nurse)...I knew I could not continue, as I had almost fell on my patient while giving medication...so that was 3years ago...my cognitive dificulties slowly deteriorated for the initial 7 years before diagnosis. I have had CCSVI procedure (which held many improvements, but only lasted a month, then re-stenosis)...prior to that, it was Avonex (felt like it was killing me), FDA clinical trial, LDNi, you name it I tried it...the past 3 years has been a blur to me, just time passing by, me feeling useless and having to depend on my daughter and family and friends for everything...i can walk to the bathroom (i am what is called a wall-walker). Outside of the house now i am declining so much, no more cane, must use wheel-chair. I did however just start the Wheldon protocol and about a month and a half ago, waiting till the 3 month mark to pulse in the Flagyli...no NACi as of yet...My faith in God helps me through this as well as the blessing of finding all of you here...I will keep you updated...so far I am having a lil more trouble walking (herx), and fatigue extra bad (herx)...

Comments

HELLO EVERYBODY...THANK YOU

HELLO EVERYBODY...THANK YOU ALL SO VERY MUCH FOR ALL OF THE RESPONSES!!! Upon advice from a very reliable woman:)) I am going to wait on pulsing in flagyli until end of September possibly a little earlier (depends on my trip date)...as far as NACi goes...I believe as a Nurse that how Sarah eased in the NAC after much die off (this made it alot more tolerable for her) so sounds like a solid plan for myself...too many pills to swallow right now :))...today, my left hand seems a little stronger (i can snap my fingers)...dunno if this is because of the protocol or not because I have not pulsed yet...but found it amusing (smile)...@ MSMOM...thank you for the kind words...and yes i do believe that because of this unfortunate and unfair experience my kid's will be GREAT WIVES AND MOTHER'S AND PEOPLE IN GENERAL...so at the very least, they have compassion and are wonderful care taker's...so yes I am BLESSED AS WELL AS ERICA AND ANYONE ELSE WE HAVE EFFECTED because of these horrible CPNi SUCKER"S! lol...May God Bless us all...i will keep the update's flowing as they come :)

I wouldn't have thought so.

I wouldn't have thought so. To make EBs needs a lot of energy and raw materials; the protein-synthesis inhibitors like doxycycline push the organism into a tick-over state. Metronidazolei kills.

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

With regard to EBs.In acute

With regard to EBs.

In acute infection huge numbers of EBs are formed, and may be spread in the community by coughs and sneezes. However, as the infection becomes chronic, the organisms become persistent. The production of EBs is curtailed greatly. (This may be an evolutionary strategy to keep the organism hidden.)

Nontheless, there seems to be a tissue loadi of EBs which last for an indeterminate length of time. It is this tissue load of EBs which we kill with NACi; their death and the host response to the resulting mess is the likely cause of the respiratory symptoms when NAC is taken.

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

Can become active when u

Can become active when u take abxi or flagl pulse. to protect themself from getting killed in those forms. so can change to EB'si.

2009: Asthmai, 10/2010: Dr.Hahn protocol(6 month) , 4/2011:capi doxy100 bid  azith 250x3(mwf)  rifampicin 450 

naci 1200 bid  flagyli pulse (taken 4 pulse),      7/2011 : After  L F test ldh high   :

reduced abxi.  Added  turmeric.

(No subject)


2009: Asthmai, 10/2010: Dr.Hahn protocol(6 month) , 4/2011:capi doxy100 bid  azith 250x3(mwf)  rifampicin 450 

naci 1200 bid  flagyli pulse (taken 4 pulse),      7/2011 : After  L F test ldh high   :

reduced abxi.  Added  turmeric.

Bharat, sometimes people

Bharat, sometimes people find NACi too much at first.  I agree with you that it is better to take it, but the antibioticsi should be taken first if taking everything is too much.  Later NAC should come more easily.  I actually still take it nearly every day!.....................................Sarah

A  Journey through Light and Shadow

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.

I myself has experienced 

I myself has experienced  that I started taking  600mg of NACi then I increased to 1200mg and then 2400mg without much side effect , then I started taking flagyli pulses and also increased other abxi,and then I have problem in liver and stomach. I reduced antibiotics and still not getting much better. And then  I started dropping NAC  2400 -> 1200 -> 600 . And I found NAC is playing major role in porphyria  kind of reaction and also effect on liver .Now its normal  and I am  taking 600mg NAC daily.
I mean to say that it is possible flagyl pulse killed too many cpni in cryptic body form ,but result into generation of large no . of EB'si and large dosage of NAC killed large no of EB's i.e  why porphyria .
 
 
And yes,   I didn' t mean to frighten someone. Please don' t take in that way.    

2009: Asthmai, 10/2010: Dr.Hahn protocol(6 month) , 4/2011:capi doxy100 bid  azith 250x3(mwf)  rifampicin 450 

naci 1200 bid  flagyli pulse (taken 4 pulse),      7/2011 : After  L F test ldh high   :

reduced abxi.  Added  turmeric.

Evita I can understand ur

Evita I can understand ur feeling . I don't  mean it in the way  that ur family should stay  away  from u or should not support u.  neither do I want to give any  wrong message. I only want to say that we should  take NACi ,we won't like to take a chance and its available so we can take,isn't it.?
 
And secondly its not my theory. u can check following links.
 
http://www.cpnhelp.org/handbookintro
http://www.cpnhelp.org/http%3A/%252Fwww.cpnhelp.org/%3Fq%3Dsimple
http://www.cpnhelp.org/slides
http://www.cpnhelp.org/twar/twar-syndrome.htm
 
And many others.     

2009: Asthmai, 10/2010: Dr.Hahn protocol(6 month) , 4/2011:capi doxy100 bid  azith 250x3(mwf)  rifampicin 450 

naci 1200 bid  flagyli pulse (taken 4 pulse),      7/2011 : After  L F test ldh high   :

reduced abxi.  Added  turmeric.

Bharat, it isn’t my theory

Bharat, it isn’t my theory but a medical fact.  David assured me that this was the case and he is, after all, a consultant medical microbiologist.  Have you read this page?: http://www.davidwheldon.co.uk/ms-cpn-qa.html<   You might be frightening people unnecessarily.  I will have first got infected nearly thirty years ago, so if your theory is correct, I must have infected about 5% of the English population, plus numerous French people, Dutch and Italians.....................................Sarah

A  Journey through Light and Shadow

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.

Bharat I can tell my case. I

Bharat I can tell my case. I have had cpni for sure since I was 5. I am seriously ill almost disabled. I have two adult children, a husband , we sleep in one bed. According to your theory everyone in my family should be ill seriously. For sure they have cpn, but they live full lives with no limitation. It's the worst thing to have fear from cpn. They are everywhere and you don't know who coughs at you.

MSi for more than 30 years, WP since July 08, break Jan 09-March 09. NACi 2x600mg, Doxyi 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDNi, supplementsi.Since May 2013 without abxi.

Bharat, I’m afraid that

Bharat, I’m afraid that you are not quite right about the danger of Leetz giving her whole family a Cpni infection if she doesn’t take NACi.  Once someone has a chronic infection, they are not in danger of giving it to anybody.  An acute infection is different, but you can catch an acute Cpn infection from ayone you meet, especially if they are coughing and sneezing.

I didn’t start NAC until well over a year after starting treatment.  It was only then that David suggested it to Stratton as being a good replacement for amoxicillini, which Vanderbilt were then using for the same purpose.  I never took that either.  Most of my improvements were before I started  NAC..............Sarah

A  Journey through Light and Shadow

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.

I am not sure  Sarah ,

I am not sure  Sarah , about the  basis of your theory  that infection can be transmitted only if it is acute and not when it is chronic. I think the number of bacteria will grow only, depending on the duration since you have  infection. And  this is also true in case of  cpni. Hence it should be more likely to  get infected from a person with chronic infection . If I take  tuberclosis  as an example of infectious disease  just to understand , do you mean to say  that a person whose is infected can infect others, only  in starting and not later when infection grows older.( or chronic) ?
As the case of cpn is concerned , as much I have read it ( I mean in theory) ,  has 3 forms of life cycle . In order to  eradicate the bacteria it is must  to kill it , in all the  three forms.  And one of the form is Elementary bodies which is responsible for spreading  it from lungs of one person to another . Now do you mean to say  that  after  cpn becomes chronic there  is no more  EB'si ?  But  this could not  be true  if you have started taking flagyli pulses,  because  it may trigger the cryptic bodies to burst out in the form of large no of eb's. So  one should take either  Naci or amoxicillin  when start   taking flagyl pulse or even otherwise. Also a reason ,  I  recommended it for  Leetz  because she has plan to start flagyl pulse .
 
Practically speaking..., I also has cpn infection for 2 years , and I don't think someone has got infected from e . But  earlier I didn't know that I had infection (and all this theory) , if I would have  known  then I must have taken care.... because    sometimes I  think why I got ill ?, ... perhaps infected from someone.
 
If you know some other mechanism  to  support what u said   please elaborate that ,sothat it is more clear.                                                                                                             o

2009: Asthmai, 10/2010: Dr.Hahn protocol(6 month) , 4/2011:capi doxy100 bid  azith 250x3(mwf)  rifampicin 450 

naci 1200 bid  flagyli pulse (taken 4 pulse),      7/2011 : After  L F test ldh high   :

reduced abxi.  Added  turmeric.

Hey, Leetz,You and

Hey, Leetz,

You and Erica appear to be at similar places in MSi progression and treatment. Early on, by an astute member of this site, we were advised that the Wheldon protocol is not a 50 yard dash; it's a marathon. All along the route, we've found significant information and encouragement by others who have "made it"and/ or ARE making it. I find the generosity of spirit here AMAZING! I am SOOO grateful for it.

I wrote a couple of ideas for you and the relatives underneath your post on the MSmom blog. Erica endures the same kind of ignorance you do. I read once that unasked for advice is actually disguised criticism; which explains why hackles rise when we have to listen to it and respond courteously(!) 

We'll celebrate improvements; we know they will come. Did you read the limerick (out loud; limericks need to be read aloud!) about Chlamydia pn. I think it is important to insult it; dam#  parasite!!!

Erica is a single parent. Her son is now 20. He is compassionate in a way he would never have been, had he not watched his mother's pain. Your kids will get that extra dimension of understanding also. (What an AWFUL way to get it though)!

Hope you have a GREAT, interesting time on this visit coming up.

Betsy

 

 

 

I hope you will get well and

I hope you will get well and your misery will come to an end, because till now what  they  prescribed you was for  the management or control of symptoms and was  not a cure at  all, while these potocols are developed  to target the root cause of illness( bacterial infection ) and hence cures human body  by eradicating that bacteria  out of cells.
However I am not sure why you are not taking NACi , it not only protects your liver but also kills contiguous form (EBi) of the bacteria , that means your family is at risk of getting infected from you untill you start taking NAC.
Probably   you can start  taking 600mg of NAC daily and then build up gradually later.(as tolerated)
 

2009: Asthmai, 10/2010: Dr.Hahn protocol(6 month) , 4/2011:capi doxy100 bid  azith 250x3(mwf)  rifampicin 450 

naci 1200 bid  flagyli pulse (taken 4 pulse),      7/2011 : After  L F test ldh high   :

reduced abxi.  Added  turmeric.