6 Months enough time for Wheldon?

[LifeOnTheFence]

Thanks in advance for any feedback.

I tried to post this on CPN help and could not get past the preview button under New forum topics, so I copied and pasted here:

I have been on the Wheldon Protocol for 6 1/2 months with 2 complete Flagyl pulses.

While I had a severe reaction to NAC, I've had little or no reaction to Flagyl and wonder how appropriate it is to continue. I am getting tired of the stomach queasiness I feel.

I have gotten rid of all my residual sensory MS Symptoms and my left leg motor weakness. My neuro exam is completely negative, I have been able to return to my desk job part-time.

I will stay on Beta. Okay to stop now?

[Jimk]

Karen- Sorry you had difficulty posting on CPn Help. Sometimes folks forget to select a forum under which to post, and the system can't place your post. You can always use a blog, which doesn't require a category to post under, just your username.

The If's- If you got the infection early, and if you got it all, and if you had it in only a focal area, it's possible that 6 months did the trick and you could be going to Dr. Wheldon's spaced once per month protocol for a year (2 weeks abx with last 5 days of this including Flagyl/Tini).

But from where I am at two years into the protocol and really starting to improve, 2 complete flagyl pulses does not sound like much assurance to me that you've cleared the cryptic form of the bug. Some people have little reaction for a couple of pulses, then stronger reactions in later pulses. Remember that the antireplicants (doxy & zith) are used not only to stop progression of the illness, but also drive the replicating form into cryptic form where it can be killed by the flagyl. So it may take some time to get all the resident EB's to convert to RB's and be forced into cryptic form.

If you are getting nauseated from the flagyl, you might try Tinidazole instead, as it is better tolerated by many, and stay with it at least a year. Personally I'd want at least 6 pulses under my belt with no reactions before I'd taper to the once per month mode for a year-- who wants to cut it short and risk relapse!

[Jimk]

Ran across this in another post and thought it might be relevant to your question. It's a response from Dr Stratton to a question about how long to continue treatment, and what recurrance of symptoms might mean:

From http://www.thisisms.com/ftopic-2502-day ... asc-0.html

Dear Colin-

I suspect that some persons may need up to three years of therapy. We have an ongoing study in MS patients in which the treatment is going to be three years. As your symptoms returned, I would definitely go back on therapy for at least another year. The good news is that one can go back on antibiotics whenever the symptoms recur, so no matter how long one is treated, if symptoms recur off treatment, one simply goes back on treatment. Hope this helps.

Take care.

-Chuck Stratton

[SarahLonglands]

And further to this, David has seen people stop too early, at less than a year, because they felt so much better or other personal reasons and they had all their original symptoms return. Tinidazole is much gentler on the stomach than flagyl, it just costs a bit more.

I didn't get any serious reactions to flagyl until pulse five or six, but some people never do but just quietly get better, as you sem to be doing, so please carry on.

Sarah

[SarahLonglands]

Further to this yet again, David would not recommend going onto intermittent therapy until at least a year is up, but you are more than half way there already. Remember that you don't have to do the pulses like clockwork: if you don't feel like it when you are due, or are going on vacation or have a house full of guests, leave it until it is more convenient, because the bacteristatic drugs are just that.

Sarah

[MacKintosh]

Karen, I'm kind of in the same position you are. Symptoms have pretty much retreated and I feel 'good' instead of okay much of the time.
When I started this, I committed to doing this for a year, no matter what. (I never went on any of the CRABS so I could prove to myself it was the abx and nothing but the abx that cured me, if indeed I improved.) So, here we are, at almost my ten-month anniversary on abx and I have never had more than a draggy feeling from flagyl pulses. My reactions to the therapy have been almost nil, EXCEPT my MS symptoms are gone, my hair is growing in fuller and with almost no grey (it was going grey fast as the MS started), my thinking is clear and I have decent short-term memory again, plus my confidence in myself and my future has returned. Hmmmm, I think I shall continue the abx a while longer. By my reckoning, I have had cpn for several decades and I wouldn't risk it rearing its ugly head again. I figure another six months of abx cannot hurt me, can only help me and may penetrate into tissue it hasn't yet reached, thereby benefiting me in ways I may never even know about. I'm a firm believer in 'killing this bug DEAD' and if it means a few more months of inconvenience, taking a bunch of meds, I'll do it. My big fear is that I've done a fine job of driving the cpn into hibernation but they'll just come back with a vengeance once they realize it's safe to come out of hiding because there's no abx in my system to finalize their demise. I keep saying this, but it bears repeating; this is an investment in my future, my life, the QUALITY of my life, and I will invest the proper amount of time to ensure I beat this disease, not just temporarily, but permanently.
I've only done seven pulses and I noticed, at month eight, that there was a strange and welcome change in my health and my mental outlook. I've heard this about the eight and nine-month mark several times. I figure, if that happened at eight months and I had quit before I got to that point, I would have shortchanged myself. I would encourage you to keep on for the full year, minimum. Try the tini; people say it makes a huge difference for those sensitive to flagyl.
Remember those instructions on all the abx bottles? It says to finish the course ordered by your doctor, even if you feel better before you finish the pills. It's kind of the same thing; trust the guys who wrote the protocol. You feel better, but you haven't finished the prescribed course. Stay with it.
*** Oh, would you like one of us to cut and paste your initial post over to CPn Help's site, so you can kick the question around over there with the others? Maybe someone else has insight that can help you. I know one of the guys over there did abx, stopped too soon, relapsed a few years later and started all over again. You might want to touch base with him.

[LifeOnTheFence]

Your feedback was enough to convince me to continue. It's actually the doxy that makes me sick but I am going to experiment with taking it later in the day so I don't get sick at work.

I will commit to at least 6 symptom-free flagyl pulses and yes it is worth it. I started my 3rd flagyl pulse a few minutes ago.

[SarahLonglands]

Hi Karen,

You don't take doxy without eating anything as well, do you? I can be violently sick if I do that. Unlike the older tetracyclines you can eat with it, which I have always known and even drink milk with it, which I didn't realise at fist, because the first pack I got was from a slightly out of date company which gave the older advice. The next lot came from a different source, but I didn't bother reading it at first.

I am so glad that you are going to continue, having experienced more than one person stopping too early.

Sarah

[MacKintosh]

Good for you! I just sent you a pm about this, but just wanted to say I think you're doing the right thing. Isn't great to feel so good again?!?

[mamahawk]

Doxycycline makes me really nauseous if I don't take it with a meal - so I always take it at lunch and I have limited the queasiness.


Great post MacKintosh - I feel exactly the same way!