This Is MS Multiple Sclerosis Knowledge & Support Community

No, I haven't lost my mind. Having observed the herxheimer reactions of my husband who is on the Wheldon protocol, the thought came to me of a certain advantage he and others with progressive forms of MS "enjoy" as compared to protocolers with RRMS. Since, for progressive MSers, life is one long exacerbation with the intensity of symptoms varying from one day to the next, the temporary worsening of symptoms due to herxing is not something to necessarily cause skittishness with regard to the protocol. There are any number of things that might happen to temporarily worsen the ever-present MS symptoms: heat, gluten intolerance, casein intolerance, secondary porphyria, excitoxins, run-of-the-mill viral and bacterial infections, stress, poor sleep, etc. A progressive MSer knows these experiences, and when they have passed, the base exacerbation is still there. On the other hand, a relapsing/remitting MSer might be highly susceptible to protocol skittishness, as that experience has been one of having had ON/OFF-ON/OFF MS life in terms of exacerbations.

It must be very frightening for someone with RRMS to experience a pseudo-exacerbation while on the Wheldon or Vanderbilt protocol. This reminds me of the other advantage of progressive vs. remitting MS for folks on one of these protocols. The progressive types have a brutally clear view of the direction their MS had been heading before starting the protocol. The remitting types have only been getting mixed signals.

Cypriane~caregiver and advocate for husband with SPMS

Well, the title might make it sound as though you have completely gone out of your mind, Cypriane, but unlike before in the General Interest section where I disagreed with you somewhat, I am now totally in agreement. If you have progressive disease and are used to just going downhill, whether slowly or, like me, very rapidly, you know when this stops and then hopefully starts to go in the opposite direction. When I had a mild relapsing, remitting disease I would get totally better between relapses despite not taking anything at all and the space between relapses would be years rather than months. As time passed, the relapses came closer together and the remission was less total. Throughout both of these stages I think I might have found a pseudo-exacerbation difficult to deal with, but more especially in the second stage. In 2001 though, my disease plunged into progression and relapses stopped. From the moment I first started taking doxycycline, two years later, I sensed something happening. It sounds corny, but the brakes had been pulled on. I had lost the use of my right arm. This shouldn't have changed but within the month I was stiltingly drawing with it again. Ok, I kept dropping the pencil and hadn't much power there, but I was using it nonetheless. This steadily improved even if during pulses of metronidazole, I felt too drained to do much with it. My walking was the most badly affected at times during what probably was a pseudo exacerbation, but never my arm, so I knew I wasn't getting worse and it would pass, which it did, leaving improvements in its wake. Because I knew from the prognosis I had been given, I should just be getting worse I could cope with all this.

If I had started this much earlier I wouldn't have known where the hell I was. Was I having a relapse or not? However, ideally, you do want to start treatment in the relapsing remitting stage, when your deficits are less. Antibiotics don't cure the deficits, just stop new ones happening, then you have to work on improving the deficits, knowing that nothing is going to come along and attack you whilst you do. I know that eleven years ago I was on my honeymoon and walking 20 miles some days, up hill and down, and wasn't tired at the end. By 2003 I could hardly walk to the end of the garden path unaided, but now I can walk probably 4 miles if I take a trekking pole, mainly for confidence and to aid fatigue at the end. That suits me for now, because above all else, I can stand at my easel and paint all day.

Sarah