No "Herx-ing" - no metronidazole -

 I was on the Stratton Protocol for cPni from Dec. 1998 - January 2004.  I had chronic fatigue and a multitude of symptoms/illnesses. I am curious in reading now about all of the problems people are encountering with tolerating the various antibiotics and the "herx-ing" which seems to be so very common.  I am not sure I have read of anyone who didn't have die-off symptoms of some kind, and I believed now, looking back that I might have had a few, but I was not cognizant of it at the time. Are there others?  And if so, I think we need to let people know that this CAN and DOES happen for some people, that you won't feel worse in any way after beginning the protocol, but instead feel gradually better and better.

 My other question is the fact that I never used metronidazolei (I had an allergic reaction the first time I tried it and was told by Dr. S not to continue with that)...and now it seems this is a necessary med to really conquer the cPn.  Yet, I am well. I have been off the meds for 2-1/2 years and feel fantastic.  No residual problems at all.  Has everyone used the flagyl?? I know my friend did and others she knew on the protocol did.  Do we know of others who did not use it and still got well again?

 My protocol was as follows:

500mg Zithromax   M- W -F   (I began with this)

 500mg amoxicillini - twice daily    (added this the second month)

500mg Probenecid - once daily    (added this the third month)

300mg INHi   - once a day       (added this after 6 months)

Charcoal capsules 4 grams, twice daily - separated from meds and food by 2 hours each time

B12 shots IM - three times a week

 I had been mega-dosing vitamins and supps since the 70's and lots of antioxidantsi...this stuff I continued while on the protocol, but spaced them appropriately at least 2 hours or more from my meds...I did use a lot of Ibuprofen, which had always been the case so that didn't change and I was not on any antidepressants. 

When I went into the protocol, I only had my friend (who was doing very well on the protocol) to gauge my progress by and she also told me simliar things about others she knew who were on the protocol.  She more or less told me that I would continue to improve, get more energy and have more days where I felt well and the bad days would decrease. We weren't in touch more than twice a year.  She was in touch with Dr. Stratton constantly I believe.  When I began the protocol, I was plunged right into full doses and believed that since we added something new each month, I was going gradually. Yet i have been reading that not all people tolerate going head-on into the protocol and must do things VERY gradually.  I had always felt really well when on abxi and so I also think this may have played into my wonderful tolerance of it all. My friend told me that the charcoal was meant to block die off toxins from being recirculated and that the B-12 shots would prevent die-off from affecting me.  I had nobody to network with and there were no group likes this where people on the protocolsi could communicate and share their experiences.

 I am wondering if I really didn't have a lot of herx symptoms because didn't expect them - and I don't want to imply that these things are in anyones head, but more that I simply was ignorant, and so somehow, blissful about this kind of thing possibly happening and so in my reality, they did not - OR when they did, I simply dismissed it as nothing new, the illness and not the treatment, and so it didn't register with me?  Did the charcoal and B-12 shots protect me from experiencing a lot of it?  (my friend used neither did report that she had horrid die-off pain, so I figured this was why).  Was I so used to pain and feeling unwell that I simply figured i was having more of the same I had experienced for years?  Do I have a high pain tolerance - this I know is true. I was so used to feeling sick and flu-like all the time, IBSi, sinusitis, fibromyalgiai, swollen glands and sore throat, chronic bladder infection, chronic cough, rosaceai, ear infectionsi, that I am not sure if anything felt different. As promised, and as time went on, i had more and more good days and less of the real killers.  About 6 weeks into the Zithromax (which incidentally, I later found out I was given double the dosage of) I had an episode which lasted one day. I felt like I was dying with the absolute worst flu and diarrhea I have ever experienced.  I ached, felt I had a raging fever, and had a pounding headache and sore throat.  This was what I NOW figure was "herx-ing". Other than that - nothing.  symptoms got better, pain got better, everything progressed nicely on the protocol.  The other thing that must have been a herx reaction was about two years into the protocol until late in my fourth year, - I would get chills and feverish and exhaustion about an hour after my Zithromax...I would go to bed early, and wake up the next day feeling really good...so that I looked forward to my M-W-F's.

I can honestly say that each week on the protocol, I felt better and had more energy.  Are there others like this? I believe my friend was the same way...I need to get in touch with her and see how she is doing and report back.

 

Wow! All I can say is to consider yourself extremely blessed, Astrodiana!!! Really, I'm being serious. Your recovery road of feeling better & having more energy each week on the protocol is not typical! At my last Dr's appointment, I was told that this protocol brings a zig-zag line of improvement...(If we mentally plot our recovery on a line graph...) There will be periods of improvement, and then decline, and then improvement... Eventually, the periods of improvement will lengthen in duration. Eventually, reactions to treatment will not be as severe. Eventually, the healing will come.

This protocol has been so difficult for me to tolerate, that if it wasn't for this web site's support & 2 fellow protocol patients/friends; I'm sure I probably would have bailed! If I had as little support as you had, I'm sure that I would not be persevering through treatment. Without listing them all here, I have experienced FIFTEEN new symptoms while on the Cpni protocol! (And most of these are not minor symptoms or to be possibly confused with the usual waxing/waning symptoms of my condition(s).) I am often in touch with my Dr's office & my protocol has been tweeked to respond to my reactions every month since beginning treatment in January.

Again, I believe your recovery is not typical. I certainly rejoice with you that your treatment period was bearable & your recovery appears to be holding steady! Thanks for sharing your amazing story. I believe what makes this site so wonderful is that it gives us the chance to share both our joys & challenges during treatment. Knowing that others have similar reactions to the protocol is comforting, especially when you are in the midst of experiencing nasty endotoxini symptoms and/or reactions to AB's/supps.

P.S. I did 5 Flagyli pulses, but experienced peripheral neuropathy from them, so I've been switched to Tinidazole. I've never heard of Provenicid. Was that used in your treatment instead of the Flagyl/ Tini? 

Blessings,

Annie 

Primary Dxi:FM, On CAPi since1/06, On Dr.Powell's protocol, Currently taking: NACi/Azithromycin/Tini/Oodles of Supps, Northern CA.

Thanks Annie. I feel so badly for all of the people I read about who can't even get to first base in trying to beat this thing. I don't even know what to begin to tell people that would help,  except that there is so much hope for you who have found your way to the protocol and that feeling well (more than well - FANTASTIC) and being healthy again is an amazing thing...AND that I believe that every one of you can achieve this - so hang in there!

 The probenecid has the ability to maximize your meds by holding them in the cells a little longer.  I guess the normal reaction for the body is to quickly remove anything that gets into the cells thru the blood, even if it is beneficial or doing something "good", like a drug.....so the probenecid holds the meds in there just a little longer before they are "spit" out by the cells trying to clean house.

Diana- The one thing we know for sure about this treatment is that everyone has their own pattern of reactions. David Wheldoni  had a CFSi paient who did the whole protocol for a year, including flagyli, with no reported reactions except improvement. i wish. Your story is a good example that what occurs in the lab is not always what occurs in a live person. Perhaps the treatment you had, especially the INHi, restored your immunei system enough to become competant to kill any "hatching" cryptic Cpni. Perhaps you simply had less cryptic Cpn for some idiosyncratic reason, some body chemistry that interfered. Perhaps your strain of Cpn had less capacity to convert to cryptic formi.

Please don't worry that your example is too atypical. Your story is so inspiring, with such a complete recovery, that it stands alone. And as Sarah Wheldon notes, her and others have had rather mild reactions to the CAP, so it's not good to scare people off (as some get scared reading the 'agony posts' we often write needing support) by having the view that there is one predictable outcome.

Probenicid is used specifically to keep the amoxicillini from being excreted as rapidly so your blood levels stay up and kill more EB'si. it doesn't have the same effect for other abxi.  

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

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Thanks for your comments, Jim.  I went into the whole protocol so totally sick and exhausted that I just gave myself up to it and tried to do as I was directed to do.  It's only NOW that I am questioning my own experience after reading the experiences of others.  Mostly, I wonder WHY I didn't seem to need the flagyli and yet that seems so integral to everyone's protocol. But, yes - I am aware that it is individual enough that nobody seems to be taking the exact same meds or reacting in the same ways.   For the most part, my experience on the protocol each time I introduced a new antibiotic was the same one I had every time I could "score" some antibioticsi from a doctor - increased energy and feeling better all around. As a child I never once had an antibiotic, although there were times I know I could have benefitted from them.

Someone asked me if I have ever had signs of it coming back, or feared that the problem was returning. I guess I should get tested and see what's REALLY going on with me...but my answer in this past 2-1/2 years is that I have FEARED that it might be coming back (like that movie "Awakenings") but it NEVER has shown any signs of returning in any way at all. In a way, I am afraid to see my blood test results...I just want to ride the wave of wellness a little longer completely ignorant of new cPni blood test results, for fear my bubble will burst and I will find out there is still some of this stuff in me and getting ready to rear its head again. I believe I have more energy and a more complete feeling of health  and strong immunei system than I have ever had in my life...including my childhood.

Hi Astrodiana,

Thanks for sharing your story.   Your mention of rosaceai peaked my interest.   Can I ask, what were your rosacea">i symptoms before treatment (did you have flushing, burning, swelling, p&p's, broken blood vessels, etc), were these symptoms confined to facial areas only, and did you have any ocular rosacea symptoms?   Finally, how are these symptoms now after treatment?

Many thanks again... 

 

On Combined Antibiotic Protocol for Cpni in Rosacea since 01/06

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

My rosaceai began at about age 40 and disappeared the last year I was on the cPni protocol, age 54. it began with flushing and burning, usually when I was active, but there was no predicting when it might happen.   It  was mainly on my face, but sometimes down my neck, and after a couple of years of this, it progressed to a few broken blood vessels and occasional breakouts around my mouth and chin usually. I would describe it as cycstic acne...and my skin had always been very clear. I used to love the sun and tan well, but after the rosacea">i began, I would just break capillairies when I would be out in the sun.  Went to the dermatologist, and began taking minocycline 100mgs daily and using topical metrogel on my face day and night - this was age 43. I was told to avoid hot showers and baths and hot drinks, alcohol, and spicey foods...I don't drink but I had one sip of wine a couple of times on holidays and went into a full flare up of the skin.  The dermatologist also told me that sinus problemsi go hand in hand with rosacea, and i sure had those.  Her treatments seemed to do little or nothing for my rosacea, but when I mentioned to my holistic MD that I had been dxi'd with rheumatoid arthritis at age 26, he talked about The Road Back Foundation having found that many cases of RAi could be treated with minocycline for at least 48 weeks and see at least some imrpovement, all the way up to remission (back then, they did not realize it was MYCOPLASMS they were attacking the the minocin)...since I had already been on the minocin for about 5 months at that time, my MD suggested that I stay on it, add DHEAi and see what it could do for my rosacea. I stayed on the Minocin @ 100mgs daily for one year. At the end of that time, my RA was gone!  Sed rate normal, RA factor GONE, and seemingly complete healing. I have had no signs of RA since then. 

But the rosacea stayed with me...and was only slightly less likely to flare with the use of metrogel day and night.  I found that an injection of Medrol for allergies given by my internist works well to calm down and clear the skin of rosacea symptoms...and for a few years I got those shots as often as he would give them to me...every two months.  It now seems to have disappeared completely, and that happened sometime in 2004, a few months after I finished my protocol.  2004 was the first year i could go without the shot of medrol and not have the rosacea flaring up. The last two years, I have only gotten one shot a year, during tree pollen season in Spring. I just looked in the mirror...the broken capillaries are gone from my face and around my nose, and there are only a few very faint traces of broken blood vessles left on my nose.  I flush still, probably once every few months, but it goes away and leaves no other skin problems behind. 

 

Not sure what ocular rosacea is, but i imagine if it is bloodshot eyes, YES - I had that as often as it would flare.  My eyes would get dry and itch a lot too.  All gone now  :)

 Hi Astrodiana

Delighted that you are here.  Your story is fascinating.  Maybe someone can explain to this breathlessly attentive audience why it worked for you with no flagyli and no tinii.  But it worked!  And apparently very completely!  Seeing your blood work won't be a difficult thing to face, I'm sure.  You still eat well and probably take supps every day - I bet you could take NACi if you show positive.  Meanwhile, enjoy a great ride! 

Rica        EDSSi 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

 Thanks Astrodiana.    Wow, I posted a study linking Cpni and Rosaceai here on the site early this year and started abxi treatment myself (with great hopes and actually great results so far), but you're the first case where I've heard that treatment for Cpn seemed to actually resolve symptoms.   Interesting that the broken blood vessels have cleared up too.   Most of us have had to go in for IPL or other laser treatment to remove them (although I've suspected that resolving the inflammationi should allow them to clear up naturally).

Without hijacking this thread too much about this one particular ailment, can I ask if you still have any sensitivities to topicals or can you wash your face with soap and water and go like "normal people" now? 

Thanks so much for this info.   It's very encouraging... 

On Combined Antibiotic Protocol for Cpn in Rosacea">i since 01/06

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

I haven't thought about it until you asked...which is GOOD, I guess - but I actually CAN use just about anything on my face now - and usually just use the safeguard soap in the shower to wash my face or a light facial cleanser... before, could never even use makeup, a moisturizer, any product made for senstive skin. If I tried to make my face up, I would be so broken out by the time I got to wherever I was going, I looked worse than with no make up.  Rosaceai and vanity cannot coexist. the best I could hope for was clean.

 The fact that my skin is clear now is a bonus I never expected or dared to consider. I am also very surprised that the broken capillaries are gone...that is something NOBODY  told me could happen. I can now wear make-up or look good without it.  I can travel without a lot of junk in my cosmetic bag that won't help anyway. yes....YES!!!  I go like "normal people" now!

Yes...I would LOVE to know why I didn't need the flagyl.  I took 100mg metrodiazole one night before bed when my friend on the protocol suggested I try adding it in with my other meds...this was about 2 years into my protocol. Within about an hour of going to bed, I felt lots of intense itching on my face - the next morning, I woke up with huge itchy hives all over my face and neck, my eyes were swollen shut and itching, my face looked about twice it's normal size, the inside of my mouth and nose itched and my lips were swollen and itchy and I was having some trouble breathing.  I knew this had to be an allergic reaction. I am thinking I got up and took benedryl, either that night, or in the AM when I saw myself in the mirror.  I called the pharmacist and asked if he thought this was allergy and he said it sounded like a classic allergic reaction.  So I stopped it and when I wrote to Dr. Stratton and told him about my reaction, he said it was probably not a good idea for me to take it. Luckily, I did okay without it.  But the metrogel I used on my face contains metronidazolei, doesn't it?? No problems with that.

 I am trying (and not succeeding) for the past few days to find out what NACi is...it is not in the glossary and I have no idea :)  Yes, I do eat well and take supps. 

Diana- It is in the glossary. If you hold your cursor over the little 'i' superscript at the end of NACi in this post, a little definition window should pop up.

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndromei &amp; Fibromyalgiai- Currently: 150mg INHi, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Oh! okay, thanks..here i go.....

Amazing Astrodiana.  Safeguard soap even, and probably in a hot shower now rather than having to take cold ones to prevent flushing and burning?     This is better than my wildest dreams!   I was just hoping for a little relief from the constant facial burning even if I had to continue with all special skincare products.

You have just made my evening.   Actually my week, or maybe my year.   Thanks so much for sharing this info.   I can't tell you how encouraging this is to hear... 

 

On Combined Antibiotic Protocol for Cpni in Rosaceai since 01/06

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-
Yes...I agree, VERY encouraging...and I just stumbled into this without realizing it would happen...ha haaaa    Actually, this is the first time I have verbalized it other than when my doc asked the other day, "how's the rosaceai doing?" and I answered that it hasn't flared up in years......then I made the connection that since I completed the protocol, it has been gone.  That and the fibromyalgiai were the last things to leave me just months before I stopped taking the abxi. Everything I had read or been told by the dermatologists about rosacea">i took a very dim view of ever getting totally rid of it or the capillaries ever going away on their own.

BTW, metrogel (and metrocream, metrolotion and noritate) are all topical low dose (less than or equal to 1%) metronidazolei formulations used to treat rosaceai symptoms.  


On Combined Antibiotic Protocol for Cpni in Rosacea">i since 01/06

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Yep, from what I understand rosaceai is widely considered chronic and manageable, not curable so your story is amazing...

Allthough those of us with more severe forms of rosacea">i don't really consider it all that manageable even though our derms often seem awfully proud of the slight decreases in redness and p&p's that current therapy (low dose doxyi and the topical metros) provides.  Meanwhile we continue to flush, breakout, deal with broken capillaries, and many of our faces constantly feel like they are on fire! 

Wow, I'm totally thrilled to hear your story.

BTW, for anyone interested, here's the study which links Cpn and Rosacea< (it's also available from the Cpnhelp Research Articles tab at the top of the page).

On Combined Antibiotic Protocol for Cpn in Rosacea since 01/06

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Add one more to the group: no significant reactions to ten moths of protocol except eradication of MSi symptoms.  I think you'll hear more of the same from LifeontheIce, too.

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

 None of the diseasesi we are treating -  MSi, hypertension">i, Fibromyalgiai, CFSi, etc., are "curable" as most (not all, it seems, thankfully) of our neurologists very flatly tell us.  I am hopeful that the ones who have realized there is a life-changing discovery NOW will go to some meetings and suggest to or demand the attention of their fellows  - medical education shouldn't stop with a degree.

Rica        EDSSi 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

That's fantastic! I think we're out there, but don't have the need to post like the people who are suffering so much with the symptoms from the meds. Or maybe we feel bad about breezing though the treatment in comparison to those who are having such a tough time daily. The one thing I always kept in mind was that the sicker I got, the more it meant the organism was dying an ugly death, so the few times I experienced something unforseen, I was almost excited about it. No telling what I would have felt or done if I had this wonderful network of kindred spirits to share it with, rather than pretty much going it alone, but I think "going with the flow" is my way of dealing with life in general, and that was the main thing that kept me on track. I feel very fortunate to have gone thru it all so easily.  I hope that, at some point, everyone gets to that place in their treatment.

You story is extremely useful, Astrodiana.

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

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

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