I was MISDIAGNOSED!

Oh, my gosh! You're not going to believe this! I have posted, for the last several days, over on MSWorld and someone there, who's never met me, who isn't a doctor, who has challenged every single thing I have said about cpn and who tells me this protocol is DANGEROUS, has decided I do NOT have MS! Furthermore, he's determined what I do have! It's a miracle.

Here's the post: Are you aware that possible side effects of Flagyl can be polyneuropathy...pseudomembranous colitis, etc. What you had dear was most likely what was at first a possible dx for me. ADEM. It is a one time nonrecurring attack on your CNS by either a bacteria or virus. (usually but not always occurs in children, a more limited case can appear in adults). It isn't recurrent, nor progressive. Which doesn't mean that symptoms can't wax and wane with heat, stress, due to whatever damage was done that turns out to be permanent. By definition you didn't/don't have MS. A healthy body most definitely reacts to antibiotics. Many including Flagyl prevent RNA and or DNA replication which for short periods of time in a "healthy" body doesn't cause lasting problems. You kill the bacteria responsible for production of Vit K and your blood doesn't clot. there are so many body functions effected.. your recommendations are actually dangerous to the average person let alone the "healthy" one.

 Now, don't anyone pop a gasket.  I'm absolutely not looking for an influx of cpnhelp friends to go over there and rescue me.  What I would like, though, is some conversation - here on cpnhelp - on this subject. Thanks in advance...

 

 

The use of the term "dear" is a giveaway for patronizing. You are relegated to a dimunuative "lessor one" whose addled little brain just doesn't understand and it all must be carefully explained to you, impressing you with the big words too.

The arrogance of this poster is further confirmed by his (it just has to be a guy to be this patronizing) ability to diagnose you via internet post! Obviously this person has seen your x-rays, read your chart, and is medically qualified to diagnose in absentia. Real doctors would not hestitate to diagnose someone on the internet, would they? 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tini pulses.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Whoa, Mack.... I just got back from an "other" website. Am I still in one piece? I'm almost afraid to look. Expecting to see shredded flesh, but oh joy...I survived. ;) As for your new 'diagnosis' of ADEM, I really think you should go back there and get a second opinion...maybe from another non-medically trained member, but this time from one who doesn't breathe fire. kk2 ;)

 

On Wheldon regime [Doxy, Azith, and Flagyl]  for rrms since October '05.  EDSS was 6.5, now 5.5.  United States.

Wheldon Protocol for rrms since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGG's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

kk2, I saw it! Nicely done. Your flesh is intact. The same non-medical non-doctor just pronounced me 'maybe a nice person, but deluded' again and challenged me because I haven't had a follow-up MRI.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Patronising certainly, in situations where a sales rep (hazard of my previous profession) "deared" me, I replied with "Sonny". It certainly made his jaw drop.Image removed.

Anyone who doesn't know the difference between "effect" and "affect" just cannot be taken seriously. Why, prior to MS symptoms did I never react to abx in this way and I was definitely healthy then?

 

New Forest, UK. Progressive MSi dx 12/06 LDN 3/07 CAP 6/07: Wheldon

speedbird

MacK, exactly what speedbird said...first the dear & then the wrong affect...genius Image removed.!!

so we are all in dreadful danger then????   RIGHT!!

We march on, there will be critics, misdiagnoses & Lord knows what else.  We are but mortal afterall. 

I was thinking today, we should always be open to new information, providing good source, of course.  This thought after I was reading "the newest, latest & greatest medical information from Immune Support.  As soon as I saw this doc was connected to the CDC I wanted to scream.

Chin Up

Peace

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, 8-21-07 1st 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<

Image removed.Jim, Was that your professional opinion? Image removed.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

We could take up a collection and buy him a small pack of commas, too.

There's a good story in the book Plato and a Platypus Walk Into a Bar. Two guys are arguing. The first thinks it is true that bread always falls butter-side-down; the second contends that you merely remember it better when it happens. They ran an experiment: buttered a piece of bread and dropped it. It fell butter-side-up. The first guy says, "I know what happened! I buttered the wrong side!"

The authors use it to illustrate a principle: if there is no possible result that proves the hypothesis false, then it was really not a test at all. So: if you do a CAP and fail to improve, the CAP is ineffective. If you do a CAP and get better, then you never had MS. It's not really a test of the theory at all.

Frustrating as it is, though, it's unlikely that you could make a dent in the troll's hide with valid arguments. Anyone who is that anxious to establish ascendancy and simultaneously so unaware of his logical error probably isn't going to start thinking logically even if presented with clear evidence and reasoning.

He seems to be so threatened by any idea that contradicts his conclusions that he has to neutralize it by rhetoric before it's properly tested. Very sad.

Ron

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

Currently: doxy & zith -- continuous; metronidazole -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

Ron

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

Began rifampin trial 1/14/09

Currently: on intermittent

No, no. Just speculating!

Ron- where can I find a pack of commas? I seem to be out? and only have question marks.

Someone send me the page link so I can see this in the flesh. 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tini pulses.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

I am being drawn in.  Could that link be posted here for viewing as well as being sent to Jim? 

 Louise, USA, Northern New England. CPn, Bb(Borrelia B., Lyme,) CFS.     Started CAP 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 1200 mg.

  • 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

Mac, there are lots of nut cases out there on the Web.I prefer to keep my council with this group who I feel are rational decent humans.It is easy to be vulnerable emotionally when you are just trying to be sincere and helpful. I have fallen into that trap too many times. I say those that won't listen with an open mind deserve their fate. History is littered with countless examples of this mindset. Don't let this turd get to you. You are above all his petty machinations. Raven CAP since 8-05 for Cpn and Mycoplasma P. for MS and/or CFS

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

Raven, I only ventured out of the nest to see if anyone was alone over there, doing abx, or if someone who was open to it wanted some information. Instead, I was shocked at the vile response and behavior of more than half who posted. We may get a couple of new visitors, however, as a result, and they are very nice people interested in pursuing abx information over here. I know we'll treat them with more kindness and generosity than I received, and really that is all that matters. (It was a strong reminder, though, of how fortunate we are to have this site, which is a haven in the storm.) Now could someone tell me what this ADEm thing is that the guy is so hot on?

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

MacK

I am proud of you for jumping out of the nest & into the fire storm. 

Occasionally we get a little Troll like here, but all in all, we are a civil bunch.  I am happy we can speak here without getting turfed for trying to be helpful.

We have a wonderful generous caring spirit here.  I am very thankful.

Praise God, it's a brand new day!

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, 8-21-07 1st 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<

Mac, your post brings up my frustration with the opinions of others. On the one hand I have the medical profession who tell me that I am in denial and that I need to 'embrace my MS'; and then on the other I have 'friends' who always seem to know one person who has MS, but who lives a completely normal life and has never allowed it to effect them (i.e. it is all in my head).

I think the one thing that makes a difference is whether someone either has MS (or insert your condition here) or has a close family member (spouse or child) with the illness. Because when someone has that close personal contact with it their attitude changes dramatically and they are much more open to possible explanations and solutions.

I hate the word denial, because it implies head burying, but non-acceptance is not denial. Not accepting the diagnosis and the proffered drugs has led me here to this extraordinary site. Acceptance is really a form of denial in my opinion and the medical world seem to just want patients to blindly accept their word, which in the case of MS, is fatal.

My little rant....

ADEM is probably: http://www.encephalitis.info/TheIllness/TypesEncephalitis/ADEM.html

Malcolm

Doxy 200mg since 13 Sep 07 (100mg since 26 July 07), Nac 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MS Aug 06.

Malcolm

Wheldon Protocol since July 07. Doxy 200mg July 07, Nac 1200mg July 07, Azi 250mg 3xweek Aug 07, Flagyl pulses Oct 07, diagnosed MS Aug 06. Intermittent Aug 08.

Here's the link, Louise, just added to for the second time in two days by me; and I was never going to go there again. http://www.msworld.org/forum/showthread.php?t=70114   KK2, your reply was brilliant, but Malcolm, I would hope you are right about the close family member, but I know from experience this isn't always the case........Sarah    An Itinerary in Light and Shadow   Finished Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving with no exacerbation since starting. EDSS was 7, now 2, less on a good day.
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.

 Thanks, now I get a better idea. Every community has it's culture. This one (or at least this thread) seems dictated by the double blind standard (pay no mind to the low levels of sucsess of those authoritatively tested drugs). It was heartening that people checking in from elsewhere in the site were outraged at the attitude and treatment you received, which certainly says that this is not a site-wide norm. 

Some of the most vociferous responses are from those who have been disappointed in prior expectations, and so are understandably angry and suspicious. It does strike me that K, who reports 99% recovery from IV Rocephin (which understandably made her feel horrid-- die off anyone?) none-the-less adamantly attributes all her wellness to "Mr. Copoxone." Not sure of the logic there, but she clearly has strong feelings of having been fooled or let down by the abx treatment or promises.

Overall, Mac, the key is exposure. If even one person reads this thread and becomes curious it 's worth a foray. The good news is that, due to your health recovery, you are up to it!

We are still a young and very anectdotal approach. We don't have "proof" yet in the scientifically accepted use of that term, we have observations and reports. I just read a discussion about the MP dominated, of course, by the true believers of that protocol. They think we are deluded because "Where are the molecular models (such as BM has drawn) that show their case?" I was flabbergasted that people take molecular models (computer generated pictures) as evidence for God's sake rather than the kind of hard science measurement and experiment shown in the Mitchell/Stratton patents. They also, inaccurately I believe, include Cpn as a "cell-wall deficient" bacteria, as that would include it in their paradigm rather than require their paradigm to change i.e. to account for multi-phasic organisms.

But it's not worth the breath, or the typing equivalent, to get into rebuttal as the amount of background each arguer is referring to within their own camp seems to all of us so self-proving. I include us in this as well. We are all arguing from a set of explanations and data, and pointing to our successes as the obvious outcome, when in fact they could be due to other factors. My belief is that it is in the availability of high quality information, and the diversity of approaches, that people will be able to choose what makes most sense to them. That's why I appreciate your getting the word out, even if your reception was poor. You did a fantastic job of presenting your own experience, and that there is an alternative view. God speed. 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tini pulses.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

D W

This reminds me of a dark night several years ago; Sarah and I were walking home. At one point there was a sharp bend in the road, and the surface was wet and greasy. A young woman riding an old Triumph motorcycle took the corner; although she was going at a reasonable speed she skidded and came off. She was wearing dark leathers, and was completely uninjured. The risk came from other traffic. We directed the traffic round her while she made her way to the pavement. Her bike was rescued. She took off her helmet and shook her hair and began to talk to us. At this point a young man ran up, having seen the accident, shouting at the top of his voice: 'She needs a tourniquet! Apply a tourniquet!' We invited him to leave. Why, Mack, your experience should remind me of this vignette I don't quite know, but it does. Containers for punctuation: that's a novel idea. A kind of extension of the collective noun. Examples which come to mind: a packet of periods; a quiver of question-marks; a carton of commas; a sack of cedillas; a tin of tildes and an 'amper of ampersands. D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now; just supplements and IR sauna. Morning BP typically 105/75]
D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

I've just read the thread on MSWorld. Somehow I feel a vague need to apologise to Mac for people in general. I am not really surprised at the content of the posts, since, in my opinion, fear is an underlying emotion behind all MS sufferers.

We (and I speak as a sufferer) have had very little hope to cling to for sometimes long periods of time, so if anything appears to want to take away that small hope, fostered by the med. profession, with a radical new theory(?), why then we might attack it out of blind fear. They truly are more to be pitied than condemned. Anyway I'm off upstairs to screw some floorboards down.

Robert - MS for 16yrs. CAP since Jul 07, NAC 2400mg, Doxy 200mg daily, Azith 250 mg MWF.

MS for 20yrs. CAP since Jul 07, NAC 2400mg, Doxy 200mg daily, Azith 250 mg MWF, Flagyl for 4yrs.

 David- how did you restrain yourself, or restrain Sarah, from suggesting he apply his tourniquet around his gushing throat? Must just be me.

Your collective suggestions certainly give wing to thought: how about and extension of hyphens? And I'm glad your notation helped seperate for me the literate packet of periods from the biological collective, a menstrual of periods. And of course a gaggle, derived from 'to gag," of supplements. 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tini pulses.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Luckily for him, Jim, it was in my dim period, otherwise I might have been inclined........Sarah    An Itinerary in Light and Shadow   Finished Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving with no exacerbation since starting. EDSS was 7, now 2, less on a good day.
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.

Mac, I want to commend you on your diligence to get the information to others.  I only read the first page of the thread. They were malicious, sarcastic, and bitter.  And you kept your composure the entire time.  You handled the situatin with style and grace. Well, the information is out there. Like JIm said, I want to stand up and give you a standing ovation.  (stand, and clap, clap, clap).   

Mphs, TN. hypothyroid, weak adrenals, 37 yo with hormones of 80 yo, fatigue. 6/26/07- CPN Titer 1:256 (normal 1:16); 6/27/07- NAC; 7/2/07- doxy 100, 2xday; 7/19/07-Biaxin 250 day. 9/7/07- stop Biax, start azith 250 a day.

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpn, myco, EBV, CMV, HHV-6. Cap began in 6/07. NAC 2400mg, mino 100mg bid, biaxin 500mg bid. cytomel, flagyl bid continuously.

You guys are great. Part of the success of this site is due to its foundation by intelligent, compassionate people. Much of the rest of its success has to do with the subsequent 'collection' of intelligent, compassionate people. When I say, 'collection', I mean people who were collected or culled, perhaps, from different sites, different, countries, different strata. What we most have in common, apart from our disease, is kindness, generosity of spirit, an unusual amount of personal determination and a quiet strength.

I am, again, humbled to be in the company of such amazing friends.  It sounds cliche to say this is such a safe, supportive place, but when one goes elsewhere and experiences such a vastly different environment, it makes one appreciate 'home' all the more.  I think the standing ovation belongs to all of you.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Just came home from a visit to the aformentioned site.

Thanks for dropping the info links on that Pharmaceutical company sponsored site.  That whole distasteful encounter could be a good thing, free information to those who may begin to think for themselves, how wonderful that someone even thoughtfully included the link to this very thread.  And some folks that are wanting and open to the rhelm of all possibilities could come on over, stay for healing through CAP, and bye and bye, as we say here abouts, get weller!  (Better as some may correct).

I, having much of the healer-warrior disposition, (genetically based I am sure Image removed. 50% Scot herritage here)   My goal is to foster  the of Johnny Appleseed appoach to health education in sharing CPnhelp.org and CAP, spreading the seed (internet address) trusting that some will sprout, take root, prosper and make more fruit/seeds. 

Hope abounds here and has been demonstrated to move folks here to improved states of being.  Moving towards better is better.  Hope is the turning point that carries the process and the improvement forward through the ups and down.  Today I can say, I am better. 

Louise, USA, Northern New England. CPn, Bb(Borrelia B., Lyme,) CFS.     Started CAP 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 1200 mg.

  • 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

Mac, congratulations on remaining rational in an irrational forum. I wanted to scream reading that thread on MSWorld. Some of us had a similar experience on MSRefugees several months ago. It's very upsetting. I can only hope that at least one person will benefit from the information you provided! On CAP since June 2006 for high blood pressure, nasal allergies, restless legs, memory and cognitive problems. Currently: Doxy 200 mg/day; Azith 250 mg 3X/wk; Flagyl pulses every three weeks 400 mg 3X/day for 5 days
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

Maybe we shouldn't be surprised at the treatment you got there, Mac. When Dr. Semmelweis realized that washing hands and instruments prevented death from infection after childbirth, he was not able to convince doctors within his lifetime. He wound up being put in an insane asylum. Combined Antibiotic Protocol minocycline, azithromycin, metronidazole for muscle pain, insomnia, interstitial cystitis, sinus, CFS, weak constricted voice, dry eyes, stiff neck, veins, thyroid.

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Cutting edge thought, yes that's what we have here and observable results. Janice thanks for the history insight on the slowness of change for of much of the normal and customary treatments.  There is some saying like medicine is x number of years behind the reasearch. or something like that.  Perhaps someone will fill or correct that adage  properly for me.

Louise, USA, Northern New England. CPn, Bb(Borrelia B., Lyme,) CFS.     Started CAP 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 1200 mg.

  • 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

Jim and D W -- while we're about it, we might find some term for a collection of @'s. To borrow from David, an 'atful of @'s, or I might go so far as a venue of @'s.

I'd also like to propose a flat of #'s. I know there's someone out there wondering, "A flat of octothorpes? A flat of number signs? I don't get it." 

I'll also take the blame for a fistful of $.

If we have enough of these, we could write a book, The Man Who Mistook His Wife for an @, who was also the only person who could say the phrase "Where is it, @?" gramatically correctly.

Anyway, it sounds like the young man with a tourniquet fixation was a victim of Maslow's law. It's just as well he didn't know how to do an appendectomy.

 

Ron

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

Currently: doxy & zith -- continous; metronidazole -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

Ron

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

Began rifampin trial 1/14/09

Currently: on intermittent

Yes I say again Ron, cutting edge thought.  It is here on this site.  Oh, better is also the return of an appreciation for the absurd. Image removed.Image removed.Image removed.Image removed.Image removed. 

Louise, USA, Northern New England. CPn, Bb(Borrelia B., Lyme,) CFS.     Started CAP 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 1200 mg.

  • 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

 Ron- didn't they convert from #'s to Euro's?

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tini pulses.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Arrgghhh! You guys are nothing, if not persistent! Bad puns all around.

Now, seriously.  Thanks for those who went over and posted their stories in a sincere attempt to clarify that I am not one lonely voice singing into the wind.   I do recall asking that no one go over there and rescue me, yet several good souls did, and left compelling posts.   I'm not going to continually rebut and debate the biased ranting of a few people who skew their 'research' to fit their agenda, so no need to keep going back and forth between sites, guys.  

The one question I will posit on that site is, "Were you getting better before you started the antibiotics or did you get better after starting the protocol?"   For those who have already posted over there, would you please check in and give me a one-sentence long response?   Thanks!

As I said over there, let people make up their own minds.  Brain fog causes a lot of poor judgement and misconception, so I'm not going to continually spar over there.    My brain fog has cleared and I put my time to better use these days.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Mack, you didn't NEED to be rescued - and we didn't. What you did was commendable and it is true that if one person IS rescued it will all have been worth it. I don't necessarily want to go back - it is such a negative, aggressive place full or people who can't see beyond the ends of their noses - but I will to answer your proposed question. It will have to be after the show this weekend.

 

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 46 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