Need a rdest from caps

Submitted by jennie riley on Mon, 2010-01-18 07:04

 

 

 

 

 

 

 

 

 

I have been on the caps protocol for 3 almost 4 years, have taken 31 pulse, taken a mountain of vits and    supplements and i now feel like i need rest. I have several negative symptoms now which are causing me great conceren, i have picked a considerable amount of weight especially around my tum and bum i look like a pot bellied pig, i am sweating day and night to the extent that my cloths are soaked  i have never sweated in my life, i have to take antihitamines to combat terrble itching problems i am always feeling tired and ill. I do not want to give the caps entirely and would be grateful for advice  on maintance courses. MS is the pits of a disease and even though i am still seriosly disabled with MS who nows what i would be like without taking the caps and will probly recommece in about 6-12 mnths.So if anybody can help i would be grateful jen

 

 

 

 

 

 

 

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If I may ask what type of antibiotics are you on and have been on generally from the start?

How much improvement from the start until now?

What infections are you treating beside Cpn if any?

Cpn, Mycoplasma, Chronic EBV, M.S.(MRI, Spinal Tap-greater than 5 oligoclonal bands and VEP), PANDAS(OCD). Wheldon CAP (started 12/08), Azithromycin/Clarithromycin(12/09), Lithium, Lamictal, NAC(2.4g/day), D3(15,000IU/day)

Hi Jennie

It sounds like you and I are at about the same place in terms of longevity of taking the CAP.  I see that you're treating SPMS.  I've been treating RRMS though I do wonder if it hasn't progressed and become SPMS sometimes since it's quite a bit worse now then when I started.  Like you, again, I have picked up between 50 - 60 lbs. since I started, distributed between my thighs and abdomen.  Then there is sweating, which is where we differ.

Sweating is a common symptom you will have while going through the protocol.  I had it about 2 years ago for no apparent reason.  I would wake up with night sweats and my bed shits would be soaked at times.  I haven't had that in quite a while now.  I think that's a condition that will pass in time and it's probably a good sign that your body is responding that way, to clean out things.  I wouldn't let that concern you too much as it will pass, in time.

I know it's hard to stick to the protocol, lord knows I've had a lot of reasons to stop....but I didn't.  It is the only possible way of righting your body and getting out of the hole the M.S. is.  So I urge you not to stop for as long as your suggesting.  Cpn isn't going to know that you're taking a break and just stop what it's doing.  It's going to take the opportunity to get in and make things that much worse, so don't do it.

We're here to talk to and give you suggestions and support through this.  Rica has gone from EDSS 6.5 down to 1 on good days.  I'm hoping that I can follow that pattern and get to the same place.  Stick with it!  Don't quit, it does you no good so don't do it.

best, John

RRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
nac 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day

Jennie

People will someday (if not now) be tired of my question about Vit D level?  Has yours been checked"  How much are you taking?  And are you drinking coffee? And do you take lots of moppers? They are so necessary to get rid of the stuff that just goes round and round.

 

John (farandwide) and I are both trying to confine our caffeine intake more to the limits of our abx.  We won't know for sure whether this will have a great effect, though I believe after only a few days it has with me.  Anyway, the point is, if you are having lots of coffee outside of abx target times, cool it - I think. 

The sweating is part of this, as are so many miserable symptoms.  At 26 pulses, I think you are in the middle of the war, with casualties all around you, and it's unpleasant.  I see this so much in terms of a war - sorry.  Even when I reached 56 pulses, I discovered I still had a long road to travel.  This is the only one that is open and darn if it isn't a toll road!  But, eventually it gets little glimmers - you may have had some.  They are incredibly exciting.  Stay with it if you can.

Rica

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

Jennie, Has menopause been considered, have you been screened for hyperthyroid? 

My point is what has been done to evaluate you in a general medical sense since starting CAP, (at about the same time I did), particularly about these specific complaints? 

I support Rica's questions and particularly emphasize the moppers to get the porphyrins and endotoxins out of your system.  Most of the adjuncts that I have used to make my tx easier and my life smoother are listed in my signature.   

Cessation of progression is a big event with SPMS in my opinion.  In my experience some of us need to use adjuncts along with CAP for support.  Have you considered doing CAP intermittently to get a bit of a break as well as exploring some of the Adjuncts.  

Have you tried LDN? Or Looked at the Biofilm information, the methlylation detox support information, the Vitamin D information as Rica suggested?

  Even the recent information that Michele posted in her most recent Blog on Inclined Therapy might be considered as a possible adjunct. 

Then there is looking at your diet and bringing it in line with the actual amount of physical activity that you do, when one is movement restricted the amount of calories needed is much, much less. 

None of this is easy but might help you with your current distress in the long run. 

I am sorry to hear about your situation and do hope all the best for you.  Louise

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

I believe the key to defeating chronic infections is eating a low-carb diet with zero cereal grains (no cereals, no bread, no pasta, no wheat or corn of any kind).  I doubt any antibiotic program will be successful as long as you have wheat to block the immune system and high glucose & insulin levels to feed the bacteria.

Sweating day and night is suggestive of thyroid hormone issues.  What are taking for thyroid medications and what are your test results?

Blogger at http://perfecthealthdiet.com. 17-year chronic illness cured with diet and antibiotics, nearly fully recovered.

Hey PaulJ, have you started a CAP yet?  And how about a signature or starting a blog to share something about where you are at in your treatment and what you are treating and from what personal success perspective comes from?
  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Hi Louise - Yes, I started antibiotics around Thanksgiving, they've been great, every week is better than the one before.

I first noticed symptoms about 16 years ago, adopted a low-carb diet and started seriously trying to heal myself through diet and supplements 5 years ago, hit bottom 2 years ago, and have been healing ever since, just from diet and supplements. The antibiotics have really helped with cognitive/neuropathic symptoms -- hard to reach the brain through diet alone -- and I feel better in every way since starting them. 

Yes, I've been meaning to do a blog posting summarizing my experience.  I wanted to get experience with antibiotics before posting, but looks like I should start.

First thing I have to do is thank everyone involved in this site, it really helped me put the last puzzle pieces in place.

Blogger at http://perfecthealthdiet.com. 17-year chronic illness cured with diet and antibiotics, nearly fully recovered.