MediTest
27 Apr 2018
Author
Annette
Title

'Die-off' vs 'Symptoms'

Body

Hello all,I am trying to be clear on current problems I am experiencing and what appear to be clear die-off reactions eg pain in joints throughout my body against worsening MS symptoms eg unbearable spasticity to a degree never experienced before.It would seem the two are interconnected but I'm a little lost as to what to do and obviously worried about how much worse I will get.I also keep having horrendous bouts of cold sores. This is the second one since starting the CAP and my nose is completely blocked.

Comments

 Annette,  I find myself silently cheering for you.  Having been in the days of real misery with aching joints, I feel qualified to speak on that.  First I still have them, especially during a pulse, but nothing even close to what I used to have.  In retrospect I know now that they were attacks on infection so deep that it really hurt.   After 35 pulses I am amazed that this still happens but there is still the "feel good" time that is much better after each succeeding pulse.  I truly empathize.  MarieR will, I hope, come and tell you that the cold sores are another way of the body kicking out unwanted aliens.  She discovered that eight months or so seems to be a turning point; now it is beginning to appear that approximately two years is another milestone. Another role that is being created for those longer than, say, two years, is Poster Child for "This is How Long it Takes"

Rica PPMS  EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 35 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Annette,

 

I too have a problem with Major spasticity.  I notice when I do more NAC the spasticity decreases.  But I increased to 1000mg two times a week and started peeing my pants, literally.  I was told by Stratton to back off to 500mg per day of Nac.  One thing that does help with the spasticity is magnesium. 

If I do not take the magnesium I twitch at night and it is unbearable.  My face has major deep zits that hurt.  They come during increased Nac or when on a pulse.  My hairdresser commented on how dull my hair was, I do think that is from the nasties coming out. 

Good luck to you.  I am routing for you.

kc

What I wanted to say is that my spasticity increased when starting the protocol as well.  Today it is pretty good. 

start doxy/azith 10/05 Start tini 1/06 switching to flagyl slowly since it seems to provide people with most physical improvement

dx ms

dx ms 1996. started cap 10/05. Started with tini pulses switched to flagyl pulses. Now almost on continous 500mg flagyl but do need breaks. On mino 100mg/day biaxin 1000mg day and NAC 600mg. ldn 2.0mg.

Annette, I assume the cold sores are the result of an activation of  a latent Herpes Simplex I virus infection. L-lysine and lactobacillus acidophilus are usually very effective remedies.

basil. 

If cats are outlawed, only outlaws will have cats.

Annette, KC is right in what she says about magnesium helping spasticity, especially when taken en masse last thing at night!  Try to keep in mind that you wouldn't be going through all this after starting antibiotics unless they were doing something for the good.  As for the cold sores, I'm afraid that is one thing I have never, ever experienced, but I do know that lots of people who have experience a temporary reactivation of herpes simplex when they start treatment,  Basil's idea sounds a good one, but once your immune system has the upper hand, this should cease to be a problem.  This is probably THE worst time of year to be in the early stages of treatment, especially if you have young children around, but this time next year things should, by and large, be so much better when you look back over the last year..........Sarah

An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

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

Been a while since I mentioned this: If you can't manage Magnesium orally, it is absorbed through the skin if you take an Epsom Salts bath. (Granny was right!)

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazole -- 4days on, 7 days off.

RonOn CAP for CFS starting 01/06 (NE Ohio, USA)Began rifampin trial 1/14/09Currently: on intermittent

Here I am! I had lots of cold sores. I swear, for the first several months I had one every month or so. I get valtrex from the pharmacy on prescription and as soon s I think i feel that tell tale tingle I take it and my dose is 2 gms twice a day for two days. I had not had ne for months but I had to take valtrex one week before my hysterectomy as a cold sore started up that day, and with the medicine it never completely broke out and went totally away. L lysine does help also. Arginine is the amino acid that is needed for herpes replication and taking lysine counteracts it so the cold sore is on short rations.
Having a way to deal with those is good (I always got new or worse MS symptoms just after a cold sore. I absolutely HATE cold sores)

My immune system seems to be improving and doing better keeping them in check now, but at first it is amazingly frequent.
Just as an aside and a little OT but when I first got cold sores (not everyone is exposed as a child) I got one every 3-5 years. They gradually got more frequent and by the time I started CAP they were coming every 3 months or so. This I often said to myself is NOT the sign of an "overactive " immune systme as is so often said of MSers! This was one reason that the CAP theories made so much sense to me........the idea is that yourimmune systme is gradually taken over by CPn and the zombie immune cells running around your body are ineffectual and kind of immortal. Then take CAP, boom! some of those start dying off and you have even worse imune surveillance for a while till things straighten out.

At 1.3 years of treatment I am back to much more rare cold sores.
It takes time and I can say as Rica mentioned that slow is the name of it. My EDSS is not changed so far, yet these kinds of things would be very hard to explain away if the theory about CPn were incorrect.
marie
On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini 2x month, all supplements.
"Color out side the lines!"

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Thank you for your helpful replies.

 I do already take l-lysine and have been doing for a while now but it just doesn't seem to help much since starting the treatment.

I apologise for not being able to reply to everyone individually. It's late here now, I have huge dark circles under my eyes, am cold and shivering right next to the radiator, and also have excessive amounts of wind! What's that all about?? Is that part of the symptom package too?

Once again, Thank you all.

Nitey nite.

Began CAP Oct.06 for SPMS. Currently on Doxy/Roxy. No pulses as yet.

Annette, you can't be expected to reply to everyone individually, but I can respond with an affirmative about the shivering and David can respond about the wind.........Well, so could I sometimes!..........Sarah

 

An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

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

Two things:  one, I am sure Valtrex is very good, but I swear by Vick's Vaporub for cold sores. I put it on as soon as I feel the tingling and every couple of hours or so, as often as I think about it, and they rarely, if ever, develop into blisters. My theory is that it kills the virus.

The other thing is the Epsom salts bath - great idea, and many people add a 16 oz bottle of hydrogen peroxide also.  It is supposed to help remove the toxic byproducts of the die-off.  Pat