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My meeting with the neurologist was inconclusive as he suggested a wait and see approach. Laughably he said that people often feel worse before his appointment as though the disease reacted to future doctor's appointments. I will have to wait and see if I want to go back on the interferons.
I have stopped all infrared sauna sessions as it is these which seem to have provoked this new attack/deterioration. I have also stopped continuous metronidazole as up until now it hasn't seemed to have done anything very much except increase the desire to kill oneself.
At this stage the abx protocol is looking very shaky for me and I may shortly stop roxithromycin and flagyl altogether. The neurologist did at least say that I should continue with the doxicycline.

Alex, doing what you were doing, aiming the infra red bulb straight at your head and spine, despite the warnings given in the instructions, you must expect the sort of peripheral neuropathy you have been experiencing. It gives a new meaning to the Northern phrase, "Go boil your head!"

Peripheral?!! Feels pretty central to me!! No more brain blasting. Fingers crossed the inflammation will die down. At least that's what the nurses and doctors keep saying.

I have experienced intense late evening tingling in the lower spinal cord area, not dissimilar to the sensation immediately after using the infrared sauna in that area. So far I have had no further deteriorations and the new numbness and stiffness is limited to the lower body area. My right hand stiffness, swallowing problems and movement-induced phosphenes have been entirely absent in this latest downswing. The bladder seems no worse either. The night spasms affecting my legs were curiously absent last night and very weak in the previous few nights. It's as though there's so much inflammation that not even the twitchiness can make it through. Both legs continue to suffer a new numbness and stiffness especially in the knee areas and the right foot is now very spongy and sausage like. Curiously this has impacted my walking less than I had feared and there is even a certain inexplicable jauntiness to the right foot tread. Curiouser and curiouser. I am still necking doxicycline and roxithromycin.
I meant to add that since last sunday when this new deterioration started I have been struggling with what seemed a minor cold but has now transformed into a full-on gastric flu and I can't seem to eat anything especially antibiotics! My partner thinks that the whole deterioration is down to this cold as he was vomiting last weekend and spent two work days in bed. At least the numbness in both knees seems to be better in the mornings. I had to stop all antibiotics last night as I'm feeling too unwell.

ALex good post. I too have my spasms gone to almost nothing on cont tini. They are so mild I take nothing for them at all.

Like you my spasms went away early on at about pulse 4 then came back after the hysterectomy. They had been almost full on again when I went to full time tini 3 months ago now. Last night I lay in bed and just thought my God my body is so quiet...it feels wondrous and lovely strange. I was really happy drifting off...

It is odd how it went away and came back, but I see it personally as really important and a clear sign of improvement in my case anyway.
marie

Unfortunately my spasms have not gone at all and I'm now back up to 12mg of zanaflex per night to control them. My walking has deteriorated quite significantly with vice-like tightness across both knees which is an entirely new deterioration for the left leg. The left foot also now has new motor dysfunction as does my right hand. The only good thing is that I haven't noticed any movement induced phosphenes over the last few days. The infrared sauna would appear to have provoked a full-on relapse from which remission looks increasingly unlikely. Quite where this leaves the antibiotics is rather hard to say. They clearly haven't prevented the infrared induced deterioration and so may not have been doing anything very much prior to using this machine. I can't say that I've felt the metronidazole doing anything good or bad for a long time and I had been consuming it continuously for many weeks. I'm now inclined to believe that only the doxicycline was having any effect as per existing research on the tetracycline's anti-inflammatory effects. But then again...The only thing that is clear is that I have suffered quite a setback in motor and sensory function in the legs.

My new motor function loss in the right leg and sensory problems in the left leg remain unchanged although I'm now inclined to think that some of the new sensory problems in the left leg are once again related to an achilles tendon injury from December 06. However the new stiffness in both knees has not improved and is unrelated to the achilles. This is obviously looking more and more like a typical MS relapse rather than the die-off associated with antibiotic/infrared sauna use.
I am now also very concerned about the loss of appetite from which I've been suffering for about 2 months. This could be an acute attack of porphyria relating to the continuous metronidazole treatment or it could be a stomach ulcer. I have come off all of the antibiotics in an attempt to sort this out.

But Alex, if your neuro thought it was a relapse, wouldn't he have put you on steroids when you went to see him again?

Of course, I am no expert, but I tend to think it is neither die-off nor a relapse but inflammation due to the over enthusiastic use of metronidazole and using the FIR machine on your head and spine. And as I said over on CPN, I never had any appetite whilst taking metronidazole, even just for five days.

Sarah

My appetite is still terrible even having stopped the metronidazole 3 weeks ago and 3 days ago the doxicycline and roxithromycin. My poor stomach/liver/pancreas/something is in revolt. I can barely manage 2 weetabix in the morning, for lunch and supper. I have no idea whether it was a relapse or die-off or what but none of my new symptoms have improved and especially not my stomach/liver/pancreas/something! I am going on antibiotic holiday. I should be alright for 3 weeks?! Oh boy I wish I hadn't bought that infrared sauna. I'm even thinking that it is this that has made me aware of how sick I am feeling or even made the nausea worse. this seems entirely plausible. Anyway I'm going to eat oats for about 3 weeks and see what happens in the gastro-intestinal area. Am feeling absolutely terrible regardless of my bad legs.

Alex, the makers of weetabix now make something called oatabix, made largely from oats. Have you tried them? Also glucose, bought in powder form from Boots or a home brew shop, eaten by the tablespoon-full dissolved in water, or good old lucozade should help you, being easily tolerated and packed full of energy. Funnily enough, I'm not eating much at the moment and I'm not on anything. Long term endotoxin release maybe? I tend to run out of energy mid afternoon, so I get a glass of glucose water, which works within minutes!

Yes! I have just started a pack of Oatabix. I think they're better than weetabix. I put sugar on them in the end to get them down. Have just managed some beef consomme and two bits of toast covered with butter so am not quite at death's door! This morning though, I couldn't bring myself to eat. It's most perplexing. I'm worse gasto-intestinally now than I was on the metronidazole all those days ago. I sure hope it's just endotoxin/die-off/etc not new weird relapse/brain damage/infrared sauna brain boil.

Brain broil? Now that's a new one! Tell you what, just try coddling it instead. Eat plenty of sugar with the oatabix: you need it at the moment!

Sarah

My liver function tests showed elevated gamma gt levels so I will remain off the antibiotics and alcohol for the forseeable future until the liver feels stronger although my boyfriend wants me off them altogether. The latest deteriorations which occurred after using an infrared sauna still show no signs of improvement and my walking is now extremely limited and painful.

Alex, stop everything, get your liver back in order, get over the inflammation caused by attempting to broil your head and then reassess matters. Your neurologist knows what you have been doing so ask his advice.

Sarah

I have had an odd week involving 4 days on 20mg of seroxat, a selective serotonin reuptake inhibitor or anti-depressant. This gave me terrible side effects including an inability to pass water, to eat or to sleep. My walking also seemed even harder. So yesterday morning I decided to stop this and spent all day asleep. I'm still feeling pretty zombied today. Even after a coffee. Very strange. My new left leg sensory deterioration or paresthesia which has spread from the sole of the foot up the front of the leg was quite painful last night so I have decided to resume doxicycline for it's antiinflammatory properties. I added the roxithromycin just in case.