MediTest
27 Apr 2018
Author
Finch
Title

A Revelation - A CFS Theory?

Body

On March 7, 1991, in the afternoon, I developed a case of laryngitis.  This progressed to a throat infection and a deep fatigue which reminded me of when I had mononucleosis several years earlier.  The throat infection was very persistent and not very responsive to antibiotics.  I was tested for mono, but the test was negative.  I was treated with antiobiotics.  This went on for several months.  Throat infections approximately every other week.  Throat cultures positive for one pathogen after another.  More antibiotics.  All other blood tests were coming back negative.  I just kept getting

Comments

PPMS-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuro. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAP 3/2/07 - 200 doxy; azith MWF. Rockville,Md.

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13

Poor baby! Oh where is Dr. House when you need him?!!

We're all in the same boat as you -- and we won't let it sink.

PPMS-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuro. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAP 3/2/07 - 200 doxy; azith MWF. Rockville,Md.

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13

EUREKA!!!

yes, you were defintely killing bacteria gurl! 

I was thinking about the abx that kills bacteria & wonder, when the pharmaceutical co's did the preliminary testing, did they come up with the "side effects" because some of those people were infected with bacteria of various sorts!  After all, the stuff (abx) we are taking; much of it has already been off patent as long as docs have known about the existence of CPn!

My husband just quit taking the NAC because he has been having reactions! I guess this is a battle right!  I wonder if I have to wait until he has an organ fail, in addiition to the unexplained cough he has had for years that creeps into full blown bronchitis once a year!  Maybe then he will think he needs treatment when I say "I told you so"

 

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 9-30-07 2nd pulse 1 X 250 mg Metro

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Eureka indeed, we often find that our most troublesom symptoms flare up upon starting the CAP.   We take this as a reason to rejoice... Strange people that we are...

Michele (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.

hello finch,

i am new here too - and my ME/CFS problems seem to date from my late teens when i also had a spate of nasty throat infections treated intermittently by antibiotics as well. 

perhaps - as people suggest - that is the site where CPN took hold for us?  i have consistently suffered from sore throats, glands up etc. all through my M.E. even in relative remission.

one further point - i sufferred alot from tonsillitus as a child (though my tonsils were never removed).  perhaps that reflects early problems in that area, who knows.

p.s. its my Day One of Doxy!  The earth hasn't fallen out of the sky yet ...

M.E./CFS 20 years.  Just started NAC, September 2007, considering CAP and Wheldon options.

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.  Changed to Tini in December 2008.  Stopped CAP in February 2009 at pulse 16.

Hi Blackfoot -

Yes, I'm thinking all of my respiratory tract must harbor a lot of the bacteria.  Since starting the antibiotics, I've had constant scratchy or sore throat.  Also what seems to be upper chest congestion, and I've had sinus problems for years.  I still have my tonsils, too.  At the beginning of my CFS, an ear/nose/throat doctor took a look to see if maybe they should come out.  He said there wasn't even enough tissue there to operate on.  I remember another doctor looking in my throat one time and thinking that my tonsils had already been removed.  I guess they must be pretty small!

I did try treating both the viral and the candida aspects all through last winter.  It's funny - I was avoiding antibiotics at all costs.  I even went through a root canal with no antibiotics, because we didn't want the candida to get worse.  Well, obviously neither the anti viral nor the anti candida  attempts were successful for me, because here I am now trying anti Cpn!

Good luck with the Doxy.  I didn't have any problems with the Doxy, but I had just come off my Summer of Cipro, when I was really down and out.  The 100mg per day of Doxy was much less than the 1500mg of Cipro I had been taking, so it was a relief.

Also, don't make the mistake I did.  I started the NAC but didn't start any other supplements until after I switched over to the Doxy.  Be sure to get all the recommended supplements you can!

All the best - Finch

Finch - Western PA USA

ME/CFS since 1991 - CPn diagnosed June 07 - began Cipro 750 mg 2x per day - added NAC 600 mg 2x per day July 07 - Stopped Cipro and began Doxy 100mg 1x per day on 9/18/07 - Azithromycin 250mg M-W-F started on 10/10/07.

ME/CFS since 1991. Cpn diagnosed 6/07. CAP started 7/07. NAC 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyl to Tindamax 500mg 2x per day for 5-day pulse.

Life is full of ironies, i was like that about antibiotics too!  thanks for advice - i have done everything so far more or less to the letter, picking up speed and filling in a few gaps along the way.  i am taking more supplements probably than i imagine Gloria Swanson in her heyday, and i am expecting even more spectacular results, ha ha ha.  When i've been on Doxy a week or two i'll most likely start a blog on progress so far. 

all the best

blackfoot - england

 

M.E./CFS 20 years.  Just started NAC, September 2007, considering CAP and Wheldon options.

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.  Changed to Tini in December 2008.  Stopped CAP in February 2009 at pulse 16.