27 Apr 2018
Author
Mark Hall
Title

Caregivers And Family Of CAP'ers

Body

As mentioned in this blog http://www.cpnhelp.org/question_can_my_cpn_be_daI thought I would start a new topic.Paula is bedridden with CFS as you all know.  She has also had sinus issues for many years.I have had sinus issues for most of my life.  I can't remember when I last went without carrying a handkerchief in my pocket.  I used to take anti-histamine for it as it was mostly bad summers only so I put it down to hayfever.  For the last 10 years, I have had sinus issues all year round.  I now carry vicks vapourub with me every

Comments

Mark, this is an astute observation and plays into my remark about a shortcut in the future about "beginning the protocol earlier" in life. How about doing an NAC test? Not very expensive. And as for the other vitamins, I think it is a good idea. My husband, Dr R, used to say that if you eat well, you don't need to take a vit/min. I haven't heard that for years from him. I think it is the least everyone should do. Selenium starting so early in life (13) should be curtailed, maybe halved, because it CAN be toxic in large doses over a long period - like Vit A, but it is very important. Now - have I stirred up a minor storm?

 

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 50 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

  Mark my kids never get sck and I give them a lot ofthe vitamins from our list. Especially B<C<D BarbaraNAC and glutathione push for years all supplements in protocol)IV vitamins b1-12,C50gm,magDoxy200 10-/14/07, NAC 2400Doxy200mgAzithMWF10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyl 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days

NAC and glutathione push for years all supplements in protocol)IV vitamins b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyl 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008

Mark - Smart to think of these things!

the chronic sinusitis could be CPN induced but it could also be mold induced. 

Have you had your home mold tested?   I did and was shocked.  Live in a nice newish house that I built myself with no carpet and no drapes (blinds), no wet walls, insulation, ceilings, sheetrock, etc.... 

Did a mold abatement program (it wasn't too hard) as well as nasal sprays for molds and voila - my sinus life cleared, improved dramatically and stays improved.

Also - re the CPN treatment - I decided for me that I wanted to treat myself- but to do so initially via the Far Infrared Sauna.  I was going to start antibiotics recently but for several reasons decided to hold up and keep up the sauna for a while longer.

You might get a sauna for you and your step daughter to use with the hope that it may someday benefit Paula as well.   I bought a really nice one delivered from the West Coast to the East Coast for under $2000 US - vents, fans, cd player, window - I splurged.  I am sure you can get them in the UK.   Some clever folks here have built them in their homes for nominal amounts based on materials purchased at local hardware store.

Some things to think about...

Daisy - Husband on CAP 5/07.   Roxy, Diflucan round three 4-3, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxy, Azithromycin, Flagyl, Mino

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

NAC would be a good idea and does not cost much.   The way a Cpn infection manifests itself is different for each person, so it is difficult to recognise when it happens.   Sinusitis is a common complain on this website and is certainly one of my symtoms which has improved substantially.   I'm not saying that sinusitis is caused only by Cpn but judging by the number of people on this site who have it, it certainly is a strong contender.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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