This Is MS Multiple Sclerosis Knowledge & Support Community

Dear Sarah,


I have noticed those people who have given up the treatment too.I think it is not only being brave but it also is to believe in the infection theory.From the day i was diagnosed with ms ,i didnt believe that my t cells were attacking my myelin.It never sounded logical to me.Abx treatment is full of rollercoaster situations which gives you alot of pain and unwanted reactions.When a person faces these obstacles and doesnt have the belief in infection theory can easyly get scared and give up the treatment.

I am so thankful to your husband and the other intelligent microbiologists who have developed this treatment.

Take care,

Guner

Hello Guner,

Have you had a look at CPn Help/ yet? There is lots of intersting information there about the latest research and includes many other diseases implicated as being often caused by CPn. It was strted by JimK who writes here and is moderated by him and Marie (mrhodes40) who has just begun the treatment herself.

Sarah

Hi everybody,


This is my update for october 2005.I just finished my flaggy pulse yesterday and i didn't have any bad reactions like i used to have.The pain in my spinal cord is getting less everyday,muscle spasms are getting milder also.I started to take NAC last week but i had to stop taking it because of increased pain and spasms due to its inflammatory effects.My body temp. stayed in normal range during october.
My energy level is better than before (just a little bit) and my ms symptoms are still same as an improvement.
I will start to take NAC to see what it is going to do without the flaggy.
Thats all for now.

Guner

Hi folks,


I forgot to report in my previous posts that a rash has developed behind my left leg, right in the middle of my knee and hip three months ago.I googled Erythema Migrans rash pictures and found it similar to mine.
I had a lyme test back in 1993 which was negative.I thought i didnt have lyme bacteria since then, but this rash stays there for three months which gets smaller one day bigger and painfull the next day, indicates that i have lyme bacteria too.


Guner

The trouble is they aren't one of the centres that use Vanderbilt's very much superior testing methods for CPn, which you can find out more about here:

CPn Help/?q=node/70

CPn Help/?q=node/137

But at the end of the day, the same protocol will treat both CPn and borreliosis.

Sarah

Hi all,


Here is my update before exciting year 2006.I should start with what abx combination and vitamins i take at the moment.

Doxycycline 100mg x 2 daily
Roxithromycin 150mg x 2 daily
Amoxicillin 500mg x 1 daily
Flagyl 500mg x 2 daily 5 day pulse (I don't take Amoxicillin when pulsing Flagyl)

vitamin c 1000mg daily
milk thistle daily
omega 3 daily
COQ10 daily
Vitamin b 1,b 6 daily
vitamin b 12 by injection x 3 a week


I started to take Amoxicillin 2 months ago because of the rash behind my left leg and realized it really helped.The rash has never bothered me since then, i still have the rash but it is very small and not painful.
The activity (tingling,burning,itching) in my spinal cord is still there ,it was in its peak level last week.
I sometimes have sweating in my lower back area.And recently my feet start to change skin, it looks like moons surface on my feet,dry and old skin peels out by time but it only happens below my ankle esspecially under my feet.One other thing is i have a dilation of the superficial vein on my left leg.

I wish a happy new year and healty 2006 for everybody.

Guner

Guner

It was wonderful that you posted. You have been in my thoughts every day. It sounds like you are responding still. Keep pounding away at this nasty thing!

The bell went off to tell me a new message had arrived and it was yours saying you pulse Flagyl. At the time I was writing that I thought Guner took Flagyl every day! Did you in the past or was I remembering wrong?

The thing I have wondered so much about is whether you do maintenance physical therapy.

Yes Rica, i did take Flagyl every day with Rifadin and INH for about 3 months last year, i was herxing like crazy so i decided to pulse it instead of taking it everyday. And for the physical therapy question .No i am not doing it yet because i have spasms everywhere below my shoulders.But i hope to start it soon.

Today i am starting my 5day flagyl pulse and am thinking to take 3 pills of 500mg.Flagyl instead of two pills.It is going to be the highest dosage i used until now.I felt no difference when i was pulsing Flagyl last month,i tought it would be better to see if my body tolarates as well as last pulse and help to kill more cpn bacteria.I will update soon..........

wow Guner Way to go! How many pulses haveyou done so far?
And in your year end update you did not make a list of the things that are better for you, do you have more energy or other signs of relief? It is such a relief to have an approach that makes sense isn't it?
Marie

Hi Marie,

It is really a great relief to have an approach that makes sense more and more everyday and your posts are helping us to understand how cpn can be related with the diseases.I would like to thank you for that in advance.
I started to pulse Flagyl in my 6th month after taking it continuously for three months,so this is my 13th pulse.
And after 18 months of abx treatment,
I have better energy than before
I don't need to urinate often and don't need to rush.
I don't need to breath too much
I feel my legs and feet are very light and painless
My ms progression has stopped(most important)

Take care,

Guner

thank you guner for the compliment. I am just trying ot understand it well myself, I am so happy for your improvements. I hope they continue well in to this new year
Thank you for posting
Marie

I completed my Flagyl pulse today and felt no difference with 1500mg.per day dosage.

My little update for jan-06

The activity in my spinal cord changes everyday, it sometimes feels like a cat scratching or itching inside my spine and sometimes i feel light pain in the middle and lower area.This activity in my spinal cord is getting less and moving to my lower back where my first lesion appeared.Besides all this i don't have any other pain or activity in my body.Everytime i pulse Flagyl i happen to feel more activity in my spine and get more spasms all over my body though.

Guner