Kitkat2's "Ax"-cellent Adventure!

[kitkat2]

My mino and doxy have arrived apparently just in time for me to be thoroughly confused about the protocols. The "latest" seems to be quite different.
??
Began mino. yest. Two doses so far and have increased spasticity throughout, nagging neck pain which radiates down arms, sudden bouts of hand pain, ringing in ears[sometimes sounds like 'jingling coins' for short bouts], sinus/facial pain, sneezing, non-productive cough, feels like BP is lower than usual; also, interestingly, a change in libido.
-until next time

[SarahLonglands]

Kitkat,

There does seem to have been a sudden explosion of different regimes, but they are all aimed at doing the same thing! Basically you want mino or doxy, then a macrolide - azithromycin or rifampicin, maybe amoxicillin and then eventually minocycline (flagyl) or tinidazole. You don't really need both minocycline and doxycycline and out of the two, doxycycline is much more readily tolerated.

Try this:

Doxycycline 200mg once a day

Azithromycin 250mg three times a week

Amoxicillin 500mg once a day not at the same time as doxycycline

Flagyl 400mg three times a day, 5 days every three weeks, after three months.

Sarah

[Jimk]

We've gotten to the point where we suddenly have too much information available rather than not enough! A milestone, I guess.
I've posted a forum comparing the protocols over at CPn Help (CPn Help/?q=node/147) and hopefully we will get some commentary from David Wheldon and Chuck Stratton to straighten things out.
But Sarah has the essence in her post here: mino is fine but doxy is a little easier, if you have that and a macrolide you have the basics covered, then the flagyl for the big kill! If you have the mino and can work with it, use it up. You can always switch to doxy. Mino may have more tissue penetration, but also has more side effects over time. And the doxy is cheap and quite effective.

[natgas]

Hello folks,

Glad to hear that everything made it to you kk2.

You can always made a change in the protocol, but main thing is to get it started. Wishing you the best.

Roy

[kitkat2]

Thanks, Sarah, for your input about protocol. You have been patient and kind, and now I am finally clear on the what/whens of the protocol. I started Doxy 200 every a.m. yest. I will begin the azith. 250 [3X/wk]soon.
Reaction so far:
Increased muscle aches, neck, radial[arm] pains, low back pain. Very stiff, uncomfortable gait, unsteady; burning eyes. Very tired today-got kids off to school and returned to sleep for 3 hrs(!?)
*****************
Something new: A longstanding depression is dissipating! I have successfully cut back to half my usual dosing[working w/ my doc], and it is going very well.

Could it be the Ax? Not sure yet.

Until next time,
Kitkat2

[gibbledygook]

Kitkat,

I went through several flares of stiffness when I started the antbiotics and several months into the course. It is now finally dissipating a bit more consistently.

Good luck!

[whyRwehere]

I'm glad to hear about the depression lifting...my husband will start soon on abx, and if it could lift his depression, it would be worth it for that alone! Might I ask what you are/were taking for the depression? We are very wary to try anything, as the side effects seem so horrible...

[kitkat2]

I was taking the maximum dose allowed of Zoloft, an SSRI. It may be sketchy for some people, but it is my "magic bullet". At least I'm down to 100 mg once daily. In my dreams, I hope to be able to continue cutting back as I continue the Ax treatment. It is a great feeling to be laughing again, and feeling part of life!
Best of luck to your husband in his treatment. Hopefully he won't ever need depr. meds.

[kitkat2]

Mini-update: Going into 4th wk of doxy/azith protocol. I continue to need a nap every day, but hand/neck/arm pain is greatly diminished. The "jingling coins" ear ringing also greatly diminished.
Ankle/foot swelling[L>R] is virtually non-existent. Balance/walking are still challenging, however. Yest. awoke from nap to enjoy a near-normal gait--not without probs, mind you, but a basic straight line.
Left leg/hip flexor still dull however. Will try stretching.

Something new: Had a lower body massage 2 days ago. For the first time since my ms dx, it did not increase spasticity.(!!) I could actually feel my hamstrings relaxing a bit, with a resulting increase in sensation in my feet. It felt absolutely heavenly!
Until next time

[kitkat2]

f/u Neuro visit yest. to discuss meds per worsening mri last aug. After 2nd exam in 3 mos, neuro says I'm a bit worse. I kept telling him that I felt much much better(less pain, reduced depr. meds), but he is quite cynical. Wants me to consider monthly preventative steroid infusions, which I don't want to do. In aug. had a small new inflam in cervical cord with noticeable gait symptoms.
However, I did not allow his neg. attitude to suck me into a downward spiral. I have only been doing the protocol for a few short weeks and I refuse to give in, or give up.
I have much hope in the benefits of the protocol. Has anyone ever done the monthly steroid thing? While on the protocol?
Thanks!
Kitkat2

[kitkat2]

P.s. related to above^^

I did not tell my neuro about the protocol--I can only deal with his backlash in small doses.
-Kitkat2

[whyRwehere]

we have had at least 2 neuros tell us that steroids make no difference to the course of the illness. I think this idea of his is a bit stale.

[gibbledygook]

Hi Kitkat2

I think steroids can be useful for acute flares. I certainly found that they helped this time last year with an increasing gait problem but the renewed walking strength only lasted about a month.

This was before I started the full antibiotic protocol but I was on internet ordered minocycline. I mentioned this to the steroid infusers but they thought it would be fine. Which it was.

[Melody]

we have had at least 2 neuros tell us that steroids make no difference to the course of the illness. I think this idea of his is a bit stale.

Ditto here we were also told it would not alter the outcome. I must admit we chose to steer clear of them as the long term affects on your body are not always good. We researched them and found them lacking. Just an opinion.


Kitkat says:I kept telling him that I felt much much better(less pain, reduced depr. meds), but he is quite cynical.

Time to find a new neuro. He must have forgotten the part about not needing added stress. I'd say he adds stress if you can't discuss your own treatment with him.

[SarahLonglands]

Time to find a new neuro. He must have forgotten the part about not needing added stress. I'd say he adds stress if you can't discuss your own treatment with him.

Quite right, Melody! It is now over two years since I saw "my" neurologist. I haven't bothered to find a new one because I haven't felt the need. David or my GP can sort the prescriptions, the chief radiologist can do and interpret the MRIs, so I can keep away from stress.

With regards to steroids, as Gibbledegook says, they are useful for acute flares, but on the other hand they encourage the growth of CPn, which Kitkat doesn't want. A monthly top up of them seems rather counter productive. I have never taken them, nor would I.

(By the way, does anyone know where I put a posting yesterday describing a certain neurologist sloping round the hospital trying not to catch David's eye? Either here or on CPn Help. I can't find it.)

Sarah