27 Apr 2018
Author
Michèle
Title

I seem to be stuck in a time warp.

Body

Is there anyone there?I seem to be stuck in a time warp.   No new posts, not sure whether this one will show up.   Is it just me or are others having the same experience.   Is it brain fog? 

Comments

I see the same, Michele.

Prague, The Czech Republic, On Wheldon protocol for Cpn and Mycoplasma since 02/18/2006.

Stratton/Wheldon protocol 02/2006 - 10/11 for CFS and many problems 30 years

 Lala ,you are very funny .I thınk everybody went to the goat show.

On CAP's protocol for Cpn in PPMS since June 2004

Currently:  Doxy/Roxi, Flagyl pulses 

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

I didn't go, but I have been very busy!  I think a lot of people have gone to the goat show and a lot of people have gone elsewhere.  Its just that time of year and school holidays start earlier in the US than here.  Rica won't be back until nearly the end of the month, but at least one very prominent poster should be back sometime next week.  In the meantime perhaps we should organise a coup.

SarahImage removed.

 

Started the Wheldon regime in August 2003, due to very aggressive SPMS.  Moved to intermittent therapy after one year.  In May 2006 still take this, two weeks every two months.  EDSS was about 7, now less than 2.

An Itinerary in Light and Shadow  Berger.

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.

blackeyedsusan

Hi Michele. I'm new to the site so don't know what to expect in terms of action! But it does seem quiet these last few days. I'm here, however, and interested in your story since you said it is similar to mine! Hope you're doing well.

On CAP from June 2006 to July 2008 for high blood pressure, nasal allergies, restless legs, memory and cognitive problems. On intermittent CAP from July 2008 to August 2009. Currently: using RIFE Machine and under treatment with a Naturopath, symptom free

 I've been immersed in kitchen redo, so no energy for anything. Seems the summer doldrums here-- vacations, home projects and the like.

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA

Don't know what to say. I'm in a holding pattern until the weather cools down, so I haven't much to say. I'm still here, if that helps any.

Aggressive SPMS, EDSS 9, on CAP since 2005. Doxy 100mg 2x/day, Azithro 250mg MWF, NAC 2400mg/day, Metro 1250mg/day 5 days on, 10 days off, charcoal 1250mg/day during Metro pulses.

 Hi guys,  Spotty and I have been busy with putting on a family barbecue/birthday/graduation/welcome-home party at our place Saturday, and Sunday was spent visiting his aunt, uncle, and cousins near Ft. Worth today.  The heat here is brutal right now.  We had a flat tire on the turnpike about 1 p.m. today, and we were delivered by an angel of mercy in the form of a friendly young man who pulled over at the same time we did---he changed the tire with Spotty helping and me holding a sun shield over them.  He did a beautiful thing for us and refused any compensation.  Spotty was wearing his cooling vest, but it was well over 100 degrees Fahrenheit. 

Michele, you're right...the inactivity right now is eerie.  Cypriane

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Whew, that's a relief, everyone seems to be there just busy with other stuff...

I expect its all down to the goats, the heat and the decorating. 

We are doing OK here.   Ella is making (scary) plans to move closer to her place of work and trying to get help to go back to work part time.   Her knee has made a miraculous recovery.   No more pain or slipping, her only complaint at the moment is that its taking a long time to grow her bum again!   Still not ready to do a pulse, as Doxy and Roxy are still causing some fall out.

I'm noticing some improvements in my various ailments, my hair is definately growing!!!, I can breath better and my sinus is not so sore...

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMS

Sussex, UK

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

 Michele- Sounds like everything is on the right track. I can easliy imagine that any steps towards independence when Ella's course of improvement seems still in the delicate stage is a scary thing. The good new is that the doxy/roxy is stabilizing and improving things, and she can start the pulse mega-slow and not have any fallout for very long.

It's great, also, to hear your improvements on the CAP- a good indicator of the things which Cpn effects even if our focus is on some other set of worrysome symptoms. Here's to hair! And to the results of longevity, lowering cancer risk, maintaining your vascular system, cleaning up any "aging" effect on your joints, and all the other cumulative Cpn effects. To life.

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA

Most of the time I lie in the bed with my notebook, feel sick after my last tini pulse and recovering..so not in the mood to communicate much. All my friends went out of Prague for holiday. I hope next year I will be able to go on goats or perhaps on turtles. In the freetime I am trying to translate ms-treatment, but it goes wery slowly..

I am glad Michele, you see some improvements.

Prague, The Czech Republic, On Wheldon protocol for Cpn and Mycoplasma since 02/18/2006.

Stratton/Wheldon protocol 02/2006 - 10/11 for CFS and many problems 30 years

Great Guys,

Keep up all the real life activities.   I'm pleased everyone is busy and active.   I'm thinking I may have turned a corner, and am making some noticeable progress.   Also seem to be getting some positive results from taking an antifungal supplement called Tanalbit.   It and the CAP seem to be working well together and reducing my abdominal pain.   I take it over and above the probiotics that I take everyday.  (Not cheap, but cheaper that Threelac and seems to be working better for me than Threelac did, although of course I was not on the CAP when I was taking it (3L), so can't be scientific about it)

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMS

Sussex, UK

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Michele,  You seem to be moving through the CAP process very quickly and successfully.  How good is it to feel good again?  Once Spotty is well on his way, I'll follow your lead and do the CAP for my own collection of maladies.  I was whining to Jim the other day about how I didn't think I had the mettle to watch Spotty go through the herxes at the same time I would be herxing...I had been thinking about delaying my CAP start for a year.  He gently chastised me and suggested I wait only a little while to establish a staggered schedule for Spotty and me.  How right he was for discouraging a delay---it's being demonstrated to me right now by the quickly declining health of the "Mom" of this Mom-and-Pop business where I work.  She is in the hospital with non-functioning kidneys and calcium deposits in her soft tissues.  She's been nauseous for days and dehydrated.  She has type II diabetes and hasn't taken it seriously...until now.  I hope and pray it's not too late for her.  She is just a few years older and further down that "PBS road" than me...Spotty will need me in the future as he needs me now.

Cypriane~~~MS caregiver and care advocate - Dallas, Texas, USA

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

hganavaC

Things did seem to be mighty quiet around here! Now that the "goat people" have returned...there is more to read about! I was "into" showing rabbits for awhile, so I can kinda relate to the excitement & fun of the show! Sounds like a good time was had by all. Welcome back!

 
Well, I thought that I was doing so GREAT switching to Tini...Spoke too soon, I guess, cuz I'm smack in the middle of my 2nd Tini pulse & I feel like crap! Pain in places I had forgotten about & my mood went from being full of energy/optimistic to bottoming out in the major duldrums today. If I didn't know me; I'd think I was Bipolar! Yikes! Can this protocol mess with your MIND as well as your bod? "Good grief", as Charlie Brown would say...

I'm off to see Michael at Dr.P's tomorrow.Image removed. It's been 100+ here for days..."Hi" from Sunny California!

 Hugs,

Annie

Primary Dx:FM, On CAP since1/06, On Dr.Powell's protocol, Currently taking: NAC/Azithromycin/Tini/Oodles of Supps, Northern CA.

Hi Cypriane

I know from my experience that the treatment is not pleasant, but in a way I wanted to experience the fall out before Ella had to go through it.   I wanted to know how it felt.   In the end of course each of us will have different reactions and Ella in particular might have reactions that could disable her... but knowing at least how it feels to be taking these antibiotics helps me to help her.  

In the end pain is only pain and so far depression, nausea and discomforts have been bearable for me, which is why I am doing a full pulse every three weeks.   I think I would be going a lot slower if I had MS or CFS as it debilitates people so much...    

Why not try it out and see how you feel on it.   It is important in our position to feel well enough for two but my experience has been OK, and the better I feel the better I can help Ella, by example and in a supportive capacity. 

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMS

Sussex, UK

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

We were out of town as we went up north MI to the lake and I was so happy as it was about 10 degrees cooler.  My daughter had strep and we got her on meds right before we left and she was fine and the family survived too.  I increased my zithromax for a couple of days as I was worried about getting strep on vacation and my throat which seemed questionable cleared right up.

 

 

On Wheldon protocol for MS since April, 2006.  doxy 200 mgs daily, zithromax 250 mgs 3x/ week , LDN 2004

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.