David Wheldon has commented recently that the stories of bad side effects may scare people away from the anti-Cpn protocols, especially people with early MS, in whom the side effects can be expected to be mild.  So I'll try to do a bit to counterbalance the stories of bad side effects by relating my own experience.  I suppose that as far as orthodox medicine is concerned, I am in the "probable MS" category, as I have had only one attack, which produced numbness in my feet and in one leg.  As an injury, it was no big deal: the worst it did was to make my walking a bit clumsy (due to lack of proprioceptive feedback and thus loss of fine motor control, not due to motor neuron injury); and even that only lasted for a couple of weeks (although residues of it were perceptible for months).  My sense of muscle position was the only sense affected by the numbness; heat/cold, touch, and pain were unaffected.

So I started antibiotics mainly for the purpose of prevention.  I have been surprised to find, instead, that I'm being cured.  Mentally I've sped up; my thought processes are something like 25% faster.  This is something nobody promised me, but it is most welcome.  It makes itself apparent in rather odd ways, since I'm looking at it from the inside: what it looks like to me is that the world is slower.  When I'm operating at my own pace -- as I am doing now, for instance, in writing this -- little change is apparent.  I first noticed the speedup when driving a car: somehow it had become easier; it was like I had a bit more time to react.  The speedup is not confined to motor skills; conversing with others has also become easier.  It had never been hard; but now it is easier.  My memory also seems a bit better, too.

The curious thing about this is that I started antibiotics six days after the first signs of numbness.   (I asked my general practitioner for antibiotics, in case it might be Lyme disease; he prescribed doxycycline.)  So I don't know what the natural course of the disease would have been; the numbness was still spreading up my leg as I started the doxycycline, whereupon it halted.  Its onset did seem to be petering out anyway, so its halt could easily just have been a coincidence; but maybe not.

It might be thought that this start of antibiotics might serve as a model for early treatment.  But in my opinion, I started treatment far too late.  I don't know whether treatment should have started five years ago, ten, or twenty; but this disease has been slowing me down for years, with an onset so slow and insidious that I scarcely noticed it.  The "brain fog" associated with MS occurred in me, it would seem, even before the first attack -- a time which is seldom studied, because it is impossible to identify people who are about to have their first attack in order to study them.

To doxycycline I had little adverse reaction: a day of feeling tired and woozy, after which I felt quite good.  After about two and a half months of it, I saw a neurologist who specializes in Lyme disease.  He did a very thorough series of tests, including a spinal tap and MRIs.  All the Lyme disease tests came back negative -- they were quite appropriate, as I'd had the characteristic Lyme spreading-bullseye rash three years before; but evidently the mounds of doxycycline I'd thrown at that rash at that time had been effective.  My spinal tap was normal (no oligoclonal bands, no myelin basic protein), except that the level of IgM antibodies was elevated.  My MRIs showed one demyelinated patch in the lower spinal cord, maybe one more in the neck, plus three or four in the brain (one "very small", the others "very faint", according to the radiologist's report); none enhanced with gadolinium.

The neurologist put me on minocycline while waiting for the test results, and I've been on it ever since.  A few days before starting minocycline, I started on 4000 IU/day of vitamin D3, which seemed to add considerably to the antibiotic's potency (or else minocycline at 200 mg/day was more effective than doxycycline at 400 mg/day).  Certainly the vitamin D improved my mood; it has given me (and this has been quite constant) the sort of aggressiveness I'd always associated with rednecks, jocks, and others who spend lots of time outdoors.  In any case, I had another couple of days of feeling a bit tired, then a period of about a month when I was experiencing a variety of weird little neurological events: a muscle twitch here, a stab of pain there -- nothing seriously unpleasant, just curiosities.  There also was a strange mental feeling, which as it became stronger resolved itself into a mild anxiety.  For a while I figured that my anxiety was normal given my situation; but when one day I flinched at a not-so-loud noise, I realized it wasn't normal.  (I now suppose it must have been from porphyria.)  But that was the worst of it, and it wasn't particularly bad at that.  Eventually the strange mental feeling and the weird little neurological events died away; and that is when I found myself starting to speed up mentally.  I found at about the same time as I started the minocycline.  On my next trip to the neurologist, he consented to add azithromycin to the mix; that was after a couple of months of the minocycline.  It resulted in a few days of mild tiredness, after which my slow upward trend continued.

After a couple more months, I was feeling really good: I had a generalized sense of well-being which I hadn't had in many years, and was seeing hints of cardiovascular improvement.  This, of course, meant that it was time to start Flagyl.  My neurologist was a bit resistant to prescribing it, and cautioned me to take care with it.  Given the stories here, I was in that sort of mood myself.  I decided to escalate it exponentially, trying just one 500 mg pill at first, then waiting a couple of weeks, then for the second pulse taking two pills (one in the morning, another in the evening), then for the third pulse taking four (over two days), and so forth: never taking more than twice what I'd taken on the previous pulse.  This caution seems to have been worthwhile: the one pill had very noticeable effects, two pills was getting into uncomfortable territory, and with four pills I felt worse than at any prior time during the treatment (although the feelings were still manageable).  It has also been worthwhile as a confidence booster: with just taking Flagyl for one or two days, after the immediate reaction to the stuff dies down, each time, I have felt extremely good for two or three days, before a delayed reaction gradually sets in.  If I had taken the stuff for five days, I think these high points would have been obscured by the overlap of the immediate and the delayed reactions.  Taking it just for a day showed me very quickly that there was more than just suffering to be had from Flagyl.  I would have continued with it even if there had just been suffering, at least for quite a while, since I've looked into the theoretical basis for this treatment fairly deeply; but others might not.  In any case, it is now time for a fourth pulse.  I plan to repeat the two-day, four-pill pulse, and then extend it to an additional day or two if I don't feel too bad at the end of the second day.

At the same time as all this has been happening, I've been dealing with a mechanical problem with my neck, which has produced its own set of foot and leg neurological symptoms.  But that's another story, albeit intimately linked with the above; and that problem is getting better too.

Norman, thanks for your story, it is going to help me and Ella schedule the introduction of metronidazole when the time comes.   It is also interesting to note the sequence of events of your recovery.

Michele: Spokesperson for Ella on Wheldon protocol since 17th March 2006

from Sussex, UK

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

Norman, thanks for sharing your story[thus far].  It has some similarities to mine, however when I got a bulls-eye rash, nobody saw it but me, and it was over a yr later that my neuro based his ms dx on my neg lyme elisa test.  My spinal tap also revealed no oligoclonal bands, but he still called it a "flaming" mri--inflammation I guess.  At the time it seemed like a tacky way to tell me I had ms.

The treatments you have rec'd over time have obviously been to your benefit.  As I read your story of your doctors prescribing Doxy, then being open to adding Azith., I was thinking...if only..if only--

If only we all could be treated empirically, under a doctor's care without having to order meds from overseas.  Your future looks very bright.

"What saves a man is to take a step.  Then another step"

-C.S. Lewis

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.

     Great story, Norman. Lucky you started the antibiotics so early. Not many people can "stomach" 2 gm dose of metro at once, myself including!

Cured of multiple sclerosis, stopped the Wheldon's protocol in Nov,2008. Use only LDN.

Norman, Going back and reading old posts today gave me renewed appreciation for your concise style and detailed observations of your experience.  Keep us posted!

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

In my above account, I neglected to mention anything about the dietary supplements I've taken.  There's not too much to say; I'm basically taking the Wheldon list of supplements, cutting the odd corner here and there when convenient; I started most of them during the period when I was on minocycline alone.  I haven't noticed much effect from them, but haven't really looked for an effect either.  The coenzyme Q10 and acetyl-L-carnitine might have improved my tolerance for cold a bit, but it's hard to say.  The one supplement I expected to see an effect from was, of course, the N-acetyl-cysteine.  There was indeed an effect: one 600 mg pill made me tired and a bit dumber, starting a couple of hours after I took the pill, and lasting for 8 hours or so.  Repeating the experiment a couple of days later produced the same sort of effect.  Repeating it again did the same, except that the strength of the reaction diminished with each successive pill, until after about eight of them it was hardly noticeable; then I started taking it continuously (twice a day), which still produced no noticeable effect.  I didn't seem to have any reactions to it outside the brain: no runny nose, aches, etc.

But that, I recently found, is because 600 mg twice a day was too low a dose to be effective.  Shortly after writing the above message, I increased it to 1200 mg twice a day, as an experiment, and was rewarded with three weeks of NAC-flu: the same sort of tiredness and mental slowness, plus aches, plus a mildly runny nose.  It even went down into my lungs a bit (as the disease had, the last couple of times I'd had a bad respiratory infection).  The total amount of killing of EBs that was done was maybe twenty or fifty times higher than it had been at 600 mg, which seems to mean that 600 mg was not an effective dose for me, even when taken twice a day for several months.

I'm on the same dose.  Had NAC flu a few days with the higher dose, then nothing.  Flagyl seems to bring it on for a few hours each pulse, but that's about it.  I guess I'll be taking it indefinitely, though, considering the benefit. Once I clear my system, I don't ever want to go through this again.  I seriously advocate a year of abx therapy for anyone in middle age; I think so many of the problems we attribute to 'aging' are actually cpn-related.  Don't want to live forever, just want to have good quality of life while I'm here.

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

Higher Dose of NAC? I noticed that Mac and Norman both mention using a higher dose of NAC. You both mentioned increased die off symptoms. Any other side effects to taking more of it? Do you still take the higher dose? Anyone else try this?

CAP since 8-05 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

I know this is an old post but for new people reaching it, seemed sensible to add further comment.

I started on NAC slowly. 600mg a day for 2 days then slowly increased it. I got very few reactions apart from a slight sinusy pessure headache, until I reached 2400mg a day which I took all in one hit. Then I got the runny nose, sneezing, watery eyes, strange stabbing pains, not uncomfortable, just interesting.

This went on for a week or so, then I adjusted the dose by taking 1200mg twice a day and I've been on that ever since. Occasionally I get sinus pressure but nothing debilitating. I think I'll be taking that forever. 

Berkshire, UK. Diagnosed MS Feb 4th 2008.

NAC first dose 600mg Feb 9th 2008. Increased to 2400mg Feb 19th.
No GP/Neuro support. Self medicating with assistance from D W.
Starting Doxy April 2008

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.

NAC 2400mg. All supps. Doxy 200mg. Zith 250mg. Metro 400mg.
No GP/Neuro support. Self medicating with help from David Wheldon.
Started CAP 20th April

I, too, vote for a second look at the stories of those of us who experience very mild response to the protocol, not only for balance, but to allay the fears of those contemplating whether or not to start this treatment.

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

I just increased my NAC from 2.5 gms to 3 which coincided with sore throat feeling & my Herpes I to start kicking & fussing.  I had to increase my L Lysine as well for the time being.

All this, but....I had a travel day from hell on the 15th, went from 100 F to about 20 F, it was far tooo eventful for my liking, so that could have put the stress on my body & not the NAC!

It is time for another pulse! Start tomorrow!~

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

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 also use 2x1200mg of Nac per day. It is recommended in Dr.Wheldon protocol. I noticed new dying off, when I increased dose, but then nothing else.

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

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

I'm still on the higher dose (and, after a month of it, still experiencing some die-off symptoms, although they've tailed off considerably).  I haven't noticed any other side effects.

lots of trouble on this sitr, please pm me if you have ever followed the work of dr. gaeey gordon?

diagnosed MS Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxy 100 mg. 1BID. roxy.150 mg.? BID,adding rifampin soon, pulsed tini. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDN),NAC, nystatin, major wheldon supplemrnts daily,