Does this Roller Coaster End? (Wheldon)

Hello,

    I am a 39 year old male and have been on the Wheldon protocol since Febuary 15, 2015.  I am now at the stage where the antibiodics are given intermittenly (14 days every month).  On Dr. Wheldon's website it says to do this for several months.  I wanted more clarity on what several months means and how long to continue on with this protocol before I extent the periods between taking the antibiodics and eventually completing the protocol?  Are there particular signs I should be looking for to know I am near the end?  I am confused about how to get off this roller coaster ride.  Thank you very much.

Comments

The reference to taking

The reference to taking antibioticsi for 14 days a month doesn't sound like the Wheldon Protocol that I did. 

The treatment I undrwent was:

  • Doxycycline, 200 mg daily, taken continuously.
  • Azithromycin, 250 mg 3 times a week, taken continuously.
  • Metronidazolei, 500 mg, 3 times a day, working up from one day a month to five days per month as the medication can be tolerated.

This was done until there were no symptoms consistent with bacterial die-off following a pulse.

In my case, the Wheldon Protocol as described above went on for approximately two years.  Others have been at it longer.  I was fortunate enough to find out about the Wheldon Protocol shortly after my MS diagnosis.

CAPi for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazolei + INHi completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

hdwhit,  They're talking

hdwhit,  They're talking about moving to intermittent antibioticsi after completing the full protocol, instead of stopping cold turkey.

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

Why are you withdrawing from

Why are you withdrawing from the full protocol?

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

I wouldn't even attempt to

I wouldn't even attempt to answer your questions unless I had more information.  When did you start the full protocol (that means taking both antibioticsi and starting the third, for pulsing)?  How long were you on all three antibiotics?  How many full five day pulses did you complete?  What is your interpretation of intermittent treatment?  How do you feel now, as opposed to before you started treatment?  Were you diagnosed with something?  If so, what?  Have your symptoms disappeared?  Have you had any testing to confirm your disease is minimized or gone?  For starters...

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 for the reply.  Here

Thanks for the reply.  Here are my answers to your questions.


I wouldn't even attempt to answer your questions unless I had more information.  When did you start the full protocol (that means taking both antibioticsi<i< and starting the third, for pulsing)?

I started doxyi antibiodics Feb 15, 2015 and Azthromycin April 13, 2015 and Metroi May 15, 2015.  Starting June 1, 2015 the pulses of metro started.  i did one week on then one off.  After I did three 3 week pulses with one week off inbetween.  I did four 4 week pulses with a week inbetween after that.  Then I did one 5 week pulse with two weeks in between.  I then started the intermitten treatment for 14 days with a two week break after.  Followed by a 14 day intermitten treatment with a 3 week break inbetween.  Now I have one day left in the last 14 day intermitten treatment I just did.

  How long were you on all three antibiotics? 

Is the above enough information.

How many full five day pulses did you complete? 

16 full five day pulses I have completed up to this point.

What is your interpretation of intermittent treatment? 

That's what we are attempting to find out.  It looks like you do the 14 day treatment every month (So a two week break inbetween treatments.)  Do that for several months and then cautiously increase the break between the 14 day cycles.  How much is several months?  And what does cautiously mean?

How do you feel now, as opposed to before you started treatment? 

Minor and moderate spasmes gone.  Most severe spasms have subsided.  My vision is brighter and clearer.  I feel more alive and have more energy, I am able to go out on adventures in my chair now.  My body seems to heal quicker (cuts etc.).  Over the last 3 months I started to get some movement in my right thumb and just yesterday my right index finger.  Prior to that I had zero movement in my whole right arm.

Were you diagnosed with something?  If so, what? 

The first symptoms I noticed were in 1995 where I started to get numbness and tingling in my right hand. Then I was diagnosed with Relasping Remitting MS officially in 2001.  Then I stopped seeing a Nerologist after that.  It progressed to a 9 on the EDSSi scale where I am currently at.  I am currently in a power chair and am able to move my left arm a bit to eat etc.  I am reliant on all day care.

Have your symptoms disappeared?  Have you had any testing to confirm your disease is minimized or gone?  For starters...

(See above ) I am feeling better and I have not got any tests to confirm my disease is minimized.


This Roller Coaster, as you

This Roller Coaster, as you call it ended for me after four years and I have had no new symptoms since, but there was no secret as to what was wrong with me and I posted regular blogs so that I and others could keep a check on my progress.  This was not my normal way of doing things but eventually it became like second nature, so ease up and tell us a bit about yourself.........................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 for responding

Thank you for responding Sarah.  Please see the above post to see more information about my story.  Let me know if you want to know more. 

Thatguy, considering how

Thatguy, considering how disabled you had become before starting the treatment, you have done amazingly well.  I started on intermittent treatment after just over a year and did it for a further three years, gradually increasing the spaces between pulses until I was leaving bout three months or so between.  If at any time I had felt any symptoms returning, I would just have restarted full time treatment.  This happened with some people but not others: everybody is different.

Luckily I got the use of my arm back very quickly but I did have to work on it, in my case by doing some painting every day and eventually reaching the stage where I didn't just throw everything away!

My theory is that my C pn infection was quite low but it just struck some wrong parts in my brain, which might well be the case with you, so I would say carry on with the intermittent treatment, gradually increasing the space between abxi: if you are in the southern hemisphere, don't make the spaces much bigger until spring, but just see how you go: there are no set rules, but you know how you feel better than anyone.

The very worst thing though, is to think that you feel so much better that you don't need the treatment any longer.  Somebody who lives very nearby thought this after about nine months treatment for CFSi, then ended up having a stroke.

One thing, I don't know if you are taking any n acetyl cysteine, but that will be very useful before you consider spreading the abxi free periods, because it will stop the new nfection from becoming chronic and maybe causig more trouble.

I notice that you are another one who has had improved vision: though there are lots of other things that you could wish for, brighter and clearer vision is an excellent start!.........................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.

You have a positive confirmation of an active CPn infection.

(Thanks, Sarah - post now relocated to proper thread - sorry)

 Smile

G.

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

―    Abraham Lincoln<

Supaguy, I think you were

Supaguy, I think you were intending to reply to Ivan!............................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.

Hi there,Excellent news about

Hi there,

Excellent news about regaining feeling in your thumb and fingers.  I hope that this is the beginning of more good things to come!