MediTest
Submitted by Alexandra Gibbs on Mon, 2007-08-27 06:52

I'm afraid I have been guilty of inaccurate reporting. In the turmoil of the last month I haven't referred to my hand-written diary which logs all the drugs and walking distances I have managed. I last managed a good walk on the 25 April 07 which was over a kilometer. I had at that point not moved onto continuous metronidazole which I start on the 8 May. On day 7 of continuous I manage 1 kilometer and the night spasms seem quite subdued around then. By day 15 I am struggling with 600meters, by day 21 walking is "terrible", by day 30 I am having acute pains in the left foot especially the 4th toe area. By day 40 I am evidently in the throws of quite severe depression and can only manage 600 meters before needing rest. I start the infrared sauna on day 56 when I report "right leg terrible". By this stage my appetite is appalling and I'm having some kind of gastric flu/beginnings of stomach ulcer. On day 72 I start having the latest relapse. Mmm. The metronidazole seems to cause a deterioration in motor function as well as the infrared sauna. Am going on a long break from that nasty pill!

  Alex, you do sound as though you are getting out of metronidazole gloom at last, even if the short lived sun seems to have vanished.  If you want to eventually, go back to short pulses: they were devised to give your body a chance to recover, but remember that if you are experiencing nothing but depression and appetite suppression, you don't need to, but just concentrate on finding new pathways and so on.  No amount of abx will do that.........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, hopefully will soon be less.

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.

Yes, I am definitely feeling better mood wise and very slightly leg wise. Not having the spasms last night was excellent. And the left leg knee area may be less stiff although I could be just getting used to it. I must say I'm now confused as to whether the worsening during metronidazole was due to more die-off or just the toxicity of metronidazole. I know you seem to think that I've killed all the cpn but the recommendation of continuous metronidazole for those not doing so well still lurks at the back of my mind. Could I still not have a high load which would explain the last few months' deterioration? At any rate I'm on metronidazole holiday. I think the doxicycline is already helping the pain in my left leg but again this could be delusional! My god this really is a perplexing up and down disease and therapy!

I have not been doing this treatment as long as you but is has been 18 months now and I cannot tolerate the metronidazole for more than 5 days at 1200mg per day.   I get the severe gastric symptoms you describe.   So I have been experimenting with an intermittent but more frequent schedule of 3 days on three days off, 5 days on 5 days off.   As a result of this, my hair which has been a great barometer of my reactions to flagyl, has started falling out again in small but numerous patches.   So from having a fairly stable scalp with just the occasional patch I now have quite an active alopecia relapse.

I'm explaining this here, because it may be relevant to your experience of little or no reaction to flagyl on a pulsed schedule which suddenly shows more severe die off effects after the additional load of FIR heat and a sustained flagyl load....

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

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

Alex- I'm thinking a lot about the same thing: "whether the worsening during metronidazolei was due to more die-off or just the toxicity of metronidazole. I know you seem to think that I've killed all the cpni but the recommendation of continuous metronidazole for those not doing so well still lurks at the back of my mind."

With two seperate meds, continuous flagyl/tini and full dose INH I gradually descended into a flattened state of anhedonia and depression over a period of about 4-6 weeks with each, alleviated immediately but gradually when I stopped each of them. So, I don't think it was the toxicity of the drugs, as they work very differently, but rather the increase in concentrations was penetrating the brain and other tissues and getting to more Cpn. But a lot of Cpn kill in the brain will precipitate reactivity in whatever part of the brain the locus is: motor areas, cognitive areas, emotional areas, etc.

Like you, I'm on break from these "add ins" but it leaves me frustrated with how to get at these more deeply embedded areas without loss of function (physical, emotional, cognitive). The evidence of my own experience tells me that diminished or absent reactivity to abx or flagyl pulses is not a good criteria, as testing by upping the ante tells me there is more not being reached by regular abx and pulses. Maybe I'll blog on this more, but wanted to support your thoughts now that you are coming out of the fog.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 300mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Taking a break from continuous protocol)

One of the most difficult (and perplexing) parts of all this IS, as Alex ponders, the remaining load. I seem to remember that David mentioned that in the late 90's may be when he contracted his main "dose" of CPn, and Sarah's may have been 20 to 25 years ago. For those of us who have been unwittingly letting our "pet" cpn bugs penetrate our joints and brains for upwards of 50 years, it stands to reason that we have a big "load" remaining. (As a matter of fact, most of us "long-timers" are animal-people of many years.) Certainly, most veterinarians treat (and have been exposed to) many animals with Chlamydia. Be that all as it may, flagyl still hits me very hard, - BUT NOTHING - like it did 2 1/2 years ago.

I am so happy that you are better, Alex. Be a little more gentle with yourself; there will be another round down the road, should you decide to take on the assignment.

 

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 44 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

  Taking continuous metronidazole is a good thing for some people who have been carrying the infection for many years, but Alex is not not old enough.  Younger people tend to throw it off much quicker.  When I was 24 I obviously had the infection but then I was fit enough to get the better of it which is why I only had a few, far apart relapses which left no deficits.  Later, David and I got the same reinfection at the same time.  It seemed to be a very virulent strain, and with me it still lodged largely in my brain and was only just starting too creep down my spinal cord.   It was with David's encouragement that I decided to finish and he also is of the opinion that Alex, from her reported reactions, has rid herself of the infection.  Being married to him, he wouldn't want me to unless he was pretty much sure and as a microbiologist who has also worked in neuropathology I trust him in this but Alex must obviously make up her own mind after a good metronidazole holiday.   Now, I am just talking about my reactions: nothing after about nine months, but I still even now have an EDSS of about 2.  Looking at my scans, this must surely be due to the lesions.  They aren't changing except that some of the newest, brightest ones are gradually fading.  My brain is big enough to find paths around them.  With spinal cord damage this will take longer.  In the periods I haven't been taking any antibiotic I still find gradual improvements.  I can catch most of the corks thrown at me unawares and I can close my eyes and touch the tip of my nose, no problem, my plantar reflex, once very active in both feet is now much better in my right, but even reversed in my left.  My handwriting is as good as when I was a teenager and you all know about my painting. When I was still art school I won the form prize every year, then I went rather dim but now I am bright again. Yet I still can't walk very far without my trekking poles before tiring or stumbling.  Given time, I probably will never be able to walk 40 kilometres in just one day in the Camargue, but I'll be able to walk more than most people ever do.  That's why I have finished, I can now let things take their course, but not in the direction mapped out for me by my neuro..........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, hopefully will soon be less.

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.

It is indeed hard to know whether or not I should in the future give the metronidazole another good bash. However, given my latest experience I'm obviously more of a short pulse candidate! I think I'm with Jim K on this in that I think I may still have a load of cpn. But then it's nice to be told that I'm not old enough still to have a large load!! I'm 36. I feel about 100! And the bad reactions to metronidazole sort of makes me think I still have loads of bugs about. Mmm. Tricky, tricky tricky.

Alex, you are way too young to stop completely.  I wish I had known about this when I was your age as I likely would not have progressed into full blown ME which automatically comes with the falling apart syndrome & can cause permanent damage.

Go easy on yourself, be patient, you have time.

Blessings

Ruth

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 250 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<

I'm wondering about Jim's question of the cyst-buster (Tini or Flagyl) getting to more deeply embedded areas that perhaps wouldn't be reached by pulsing. That theory postulates that doing the drugs continuously penetrates more deeply in ways that pulsing won't. But, I'm wondering if that's actually the case, or does it merely take longer to get to those areas by the pulsing method? I have been pulsing for slightly over a year and have noticed that different areas of the body seem to react to different pulses which makes me think the pills gradually whack away at whatever Cpn is there, but it may just take longer by the pulsing method. Also, do we know for sure that the reactions to prolonged use of Tini or Flagyl are due to die off and not something else?

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

Pulsing was devised primarily because so many people would drop out if they did continuous metronidazole: your body needs time to repair.  Later in the regime it is more effective if some people finish off with a course of continuous metro or tini, to make sure that everywhere is accounted for.  Many people with MS, though, seem not to need this because they don't have an infection lurking in all the various parts of the body.  I didn't, for instance, and I am over ten years older than Alex.  Marie, on the other hand, is dong nearly continuous tini because she has rheumatoid arthritis in addition.   It makes sense, especially when the locus of infection is in the brain,  to go easy with pulses.  David, for instance, has seen people with meningococcal septicaemia die in little more than an hour because there is such a big and sudden die off with the antibiotics used.  In that case, its a chance you have to take, because that disease needs to be treated quickly and vigourously.  With Cpn you can take your time..........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, hopefully will soon be less.

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.

Right, I'm going to do longer pulses of say 10 days once I've got over this last deterioration. I do think that I must still have some cpn left over as I deteriorated on the metronidazole after only 15 days on the stuff. Or it's just the disease...! God knows. The burning in my left leg has moved away from the the front of the leg and is now back on the sole of the foot. This has been for the last 2 days so I'm hoping that it won't creep back up. The doxicycline seems to have helped. I have also managed 200 meters without tripping although my good motor function leg is really straining to accomplish this. Still it's better than a week ago when I kept tripping on the 5 meters to the kitchen. Off to Scotland tomorrow, home to the highest density of MS sufferers and dipsomaniacs on the planet. Yippee!

I'm so glad you're doing better.

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)

 Alex- glad to hear you are improving.

Susan- the continuous protocol is recommended by Dr. Stratton, at some point in one's treatment, actually because with all three agents (phases) covered the bacteria has no escape route for survival. So you get the most efficacious coverage. He also says that you more likely reach tissue saturation levels (where there's little difference between tissue levels and blood levels of the flagyl/tini) this way as well. We make an assumption that it is getting at tissues perhaps not penetrated during a pulse, but it is an assumption. Your explanation has as much validity (that we get different tissues at different times over the course of pulsing).

Another approach (I'm not recommending this!) is to do a pulse consisting of, say, 2-3 grams in a single dose, period. This is commonly done with flagyl for certain protozoan infections. There may be an argument for hitting with a big saturation level before the cellular efflux pumps get going to pump the drug out of the cells (and lower cellular concentrations of the drug). I recall Marie trying this way back, and having a big decrement of function, so not recommended for anyone with MS, or anyone early in the protocol. However... I'm thinking about it to see if I get anything useful from it without the depression build up that has happened from continuous usage. Am I a wild and crazy guy, or what? 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 300mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Taking a break from continuous protocol)

Alex, Great to hear that you are feeling well enough to travel.   Its a bit of an undertaking that I don't think you could have contemplated when you were feeling so depressed and unwell a couple of weeks ago.   Your tone is definitely more cheerful and confident.   I'm cheering here.

I agree with you that your continuous flagyl has caused some die off symptoms, abetted maybe by the FIR sauna.   My experience when I try increasing the flagyl (I can't do it for long periods) is similar to when I did my first pulses.   I've a long way to go before I can try continuous flagyl, I'll try again when I've been doing the protocol as long as you have.

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

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

On Wheldon protocol for MS since April, 2006.  doxy 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDN 2004

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.