Submitted by Len O on Fri, 2011-04-29 22:20

Has anyone had NO reaction to Flagyl whatsoever up to three days after completing the first full (400 mg X 3 times a day) pulse?  It makes me worry that perhaps Cpn is NOT the cause of my interstitial cystitis after all. Here's why I thought Cpn WAS the cause (and after conversations with Dr. Statton, led to my trying the protocol empirically even though an antiibody test was negative which his writings say does not preclude Cpn):- 2008 after only one day on mycobutin (rifabutin) experienced major chills, shaking, lost of appetite and ended up in hospital several days later with severe neutropenia (Dr. S had mentioned this reaction in Cpn patients) - I didn't know about Cpn at that time- had a positive improvement in bladder symptoms in 2009 while only on clarithromycin, but they returned upon stopping - still didn't know about Cpn at that time- have had one die-off reaction since starting the Wheldon protocol in December 2010 when I added the second doxy dose of 100 mg and 3 days later experienced a 1-2 day die-off and/or porphyria which subsided with charcoal Any input would be appreciated.  Am now just in wait mode to see if there might be some kind of "delayed reaction", but with all the comments on this site about the severe reactions to Flagyl I was expecting the worst - or at least something more than nothing. Could this be because I may have had this for over 20 years and it may take time to provoke a reaction?  I do not have any neurological/MS symptoms at all - all of my symptoms are associated to chronic cystitis that was diagnosed as interstitial cystitis.  I should say I am also dealing with biofilms and hypercoagulation with di-sodium EDTA and boluoke which has found to be necessary for many chronic bladder patients with an infectious cause that woulld not resolve with antibiotics. Hopefully some wisdom sent my way may help me understand how this could still be Cpn but not provoke the usual reaction most are getting from Flagyl?  Maybe a second pulse will be different? Increasing to 500 mg 3 X day?  Any ideas?  Gratefully, Len

If you have the flagyl, keep pulsing.  And if you had a good reaction to a Rifampin drug, why are you not taking that, too?  I, for one, do not think that one pulse of 400 mg X three is a final test.  I did 56 pulses and then daily flagyl for the past year (except the months when I took caffeine instead).   If you doubt, add Rifampin and Amoxicillin.

Rica

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

Every once in a while, I go on a tear about how the problem with a board like this is that people don't come here to complain about how well the protocol is going for them. They generally come here to post they're in distress, they're scared of some reaction, they need advice, etc.

So, unfortunately, a lot of people get the impression that this protocol is always difficult and always has huge, dramatic side effects. It just isn't true.

I've never had much reaction at all to the different antibiotics. Except, of course, to recover my health.  

So, be grateful you don't feel awful.  Don't judge the efficacy of the treatment by how lousy you do or don't feel; judge it by whether your symptoms improve or disappear.  And that, by the way, will not happen anywhere near as soon as you wish it would.

You may sail through treatment, as I have.  Or, you may find, over time, that the abx certainly DO lay you low at some point.  You need to give it more time, either way.

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

Thanks Rica for the reply. Does that mean that one may not get any die-off with the first Flagyl pulse but it can happen any time during a subsequent pulse?  If yes, that's encouraging news. Any sign that I'm on the right track is what I'm hoping for...

I am starting with the Wheldon protocol which recommends Flagyl on top of the NAC, Azith and Doxy because I wanted to follow advice I'm seeing and go slow enough to continue to be able to work.

Could you describe your protocol exactly?  I had never considered the Rifampin (if it's available in Canada) and was scared to consider again using Mycobutin. Is that approach documented anywhere on this site so I can bring it to my doctor for future consideration?

Do you know the diff between the Rifabutin (Mycobutin) and Rifampin?

Started Wheldon CAP Nov 2010 for interstitial cystitis suspected to be caused by Cpn. Now on all supplements, Doxy 100 mg 2/day, Azithromycin 250 mg M,W,F, one complete Flagyl pulse completed.

Rica,

  What are your amounts of Flagyl that you now take daily.  I am at over 30 months of pulses now and thinking of changing something a bit.  thx.

Cpn, Mycoplasma, Chronic EBV, M.S.(MRI, Spinal Tap-greater than 5 oligoclonal bands and VEP), PANDAS(OCD). Wheldon CAP (started 12/08), Azithromycin/Clarithromycin(12/09), Lithium, Lamictal, NAC(2.4g/day), D3(15,000IU/day)

Len, I did my first pulse of flagyl for 5 days. I did not see much of the difference, I was just very miserable constantly as I was before pulse. Nothing extraordinary happen, so after one month I did my second full pulse 5 days 400mgx 3 daily and it hit me really bad. Reactions can take time and also some pulses produce less reaction than others as there are also other factors in game.

Rifabutin is much much stronger than rifampin. 

 

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

I did the first pulse 5 days 3x500mg metronidazol and no special reactions. Then the second pulse I could do just a day 3x500 and got swollen very much (half part of my face, forehead, nose and ankles). From that time I must be very careful with pulses and have various bad reactions.

MS for more than 30 years, WP since July 08, break Jan 09-March 09. NAC 2x600mg, Doxy 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDN, supplements.Since May 2013 without abx.

D W

The ‘die-off’ reactions seem to depend on a number of factors.

Metronidazole’s active metabolites sever bacterial DNA at the AT bond. A critical number of these bonds have to be broken before bacteria die and release their endotoxins. In my case, the first pulse of metronidazole did nothing; the second pulse made the earth move.

The second consideration is the bacterial load. People with multisystem problems do seem likely to have a high bacterial load and often seem to have unpleasant ‘die-off’ reactions. Others may have a more restricted bacterial load and have very few reactions.

The third consideration is that of personal susceptibility to bacterial endotoxins; some individuals react much more strongly to neisserial endotoxins than others, and it would be reasonable to think that this variation would apply to chlamydial endotoxins as well. (Chlamydial endotoxins are very much weaker than neisserial and enterobacterial endotoxins.)

So - one might conclude by saying that if you experience ‘die-off’ reactions, that’s great; if you don’t, that’s even better.

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]

Thank you so much D W and eveyone else for your replies.  That explanation helps to put the individual differences and reactions into context and clears up my misconception that everyone was knocked flat from their first Flagyl pulse!

I am honoured to receive the information offered so generously and earnestly on this site.  And grateful for the work of Drs. Stratton and Wheldon, without which many (certainly, myself) would never have embarked on this path, hopefully, to complete wellness!  Len

Started Wheldon CAP Nov 2010 for interstitial cystitis suspected to be caused by Cpn. Now on all supplements, Doxy 100 mg 2/day, Azithromycin 250 mg M,W,F, one complete Flagyl pulse completed.

That sounds very reasonable, David. Then why it is, that treatment take so long? I understand there are differences in tissue penetration, but why some bacteria died first year and some apparently forth year in the same place (e.g. shoulders)? I know we can have also problems with biofilms, but since cpn is intracellular pathogen it should not be so important, should be?

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

Mackintosh

I am pleased with the protocol 

Every Pulse gets me a little healthier it's almost a miracle after decades of illness 

I am currently experimenting with pyruvate because it helps energy and seem to enhance the abx 

But as I have mentioned if I go to heavy I get kidney pain so I have to ramp up 

But I am feeling better just after a short time 

I have less PEM Post Exertional Malaise

Sleep is more refreshing 

Easier to get to sleep 

Able to do more during the day 

I am not where I want to be but I figure at this rate in a year I can work as much as I want and maybe start some other activities too

So There

DAILY:  NAC 2400MG , DHEA sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

I hope you stomped your foot, too, along with that "so there".    Image removed.  You'll get there.  (You neglected to say you hate us all.  I think you're coming over to the dark side.)

For anyone concerned about this exchange, it's more than amiable and it's carried over from an earlier, different, thread.

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

Oh Yeah

I HATE YOU ALL with your pulses and your improved lives 

 

DAILY:  NAC 2400MG , DHEA sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

Gee, Homina, I wish you could hate me too!

 

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

Give it time Arttile

Ha

DAILY:  NAC 2400MG , DHEA sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

4+ years? Anyway, of course.

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

Hmmm Arttie

maybe a little yoga or sauna or something else would help

DAILY:  NAC 2400MG , DHEA sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

I don't know. I think my stamina has improved, although I'm probably expecting less of myself. I can feel the muscles in my leg now. But I really can't walk as well as even 3 years ago and sometimes fall backwards because of a momentary loss of balance. I also get some really deep pain in areas that are not even being used. As of the last 2 pulses, I handle the medication better.

So, yes, I'm better and Yes, I'm worse.

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

lee

I ditto what everyone says here about the second pulse. If you go read my blog on page 2. I was so encouraged that for my first pulse of 250 for 5 days didn't floor me that I was looking forward to the second one. Well the second hit me so hard I had to wait 6 weeks to do the second and then I did only 1 day and slowly added more days with each pulse.

200mg doxy daily, 500 zithromax mwf,flagyl 1000 m-fri.rifampin 2x daily,chloestryramine 2x daily

Why do you take coartem along with cap, Lee?

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

lee

Lala,

I did 2 rounds of it because I see a llmd and he wanted to treat babesiosis even though my test was negative. I agreed because chlamydia is responsive to artemisia.

http://www.ncbi.nlm.nih.gov/pubmed/12516457

200mg doxy daily, 500 zithromax mwf,flagyl 1000 m-fri.rifampin 2x daily,chloestryramine 2x daily

Very interesting, Lee, thanx. Artemisia is active against borrellia, too.

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