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Robbie, I think she is on vacation..........Sarah

Apologies for not answering but Sarah was right, I have been away since early December and without much time to make any updates to the site. To answer your question regarding why I continue taking abx I still can't help thinking there is something behind the theory and trial data keeps pointing to the benefits of minocycline. The fact that I have experienced a bad relapse after prolonged metronidazole use and 21 hours of infrared sauna doesn't absolutely rule out the theory although it does make me much more skeptical. It has been suggested that people do a minimum of 3 years and even up to 5 years on the abx and I always swore that I would try to do 3 years. This is fast approaching.
I added fibrinolytic enzymes to the combined antibiotic protocol in october 07. Initially I was quite cautious with the dosing and I seemed to have quite substantial reactions with bad spasms in the first few days. Then these improved quite substantially and I gradually increased the dosage of lumbrokinase and serrapeptase and nattokinase until I was exceeding the recommended dose. Around this time the deficits which had first appeared during my relapse in the summer reemerged and my walking became very poor once again although it wasn't quite as bad as the summer; I could manage more like 20meters as opposed to about 5meters in july 07. I therefore reduced the level of enzymes to the recommended amount and gradually my walking improved although it is still quite some way away from before the summer relapse. I guess I could manage about 400 meters although I haven't even tried. I have rather lost the hope and energy to try. Since starting the enzymes I have had low-level but absolutely continuous sneezing and nasal mucous production not dissimilar to but much more extreme than when I started taking N acetyl cysteine. I have also noticed an increase in bruising which was particularly noticeable when I was on the high doses of enzymes. These have now calmed down except for one rather remarkable bruise which looks like a section of vein.
I am now on my 41st pulse of metronidazole. I have noticed that pulses in combination with the enzymes go hand in hand with much worse deficits than when on flagyl alone. #Although this could be random. To conclude; after 2.75 years on the cap I now have much worse walking and new painful sensory deficits in the left leg, all other deficits such as phosphenes, right hand numbness/coldness, bladder and bowel problems remain the same.

Alex, I'm not surprised you were getting spectacular bruises, taking three blood thinners, each at three times the recommended dose. I'm glad you have cut back on them. It seems to me that it is all this self-experimenting that is making you worse.

But happy new year!

Sarah

Happy New Year to you too!
Without experiments we won't get to the bottom of this perplexing disease. I'm about to do another long pulse of metronidazole but this time with enzymes to see what happens there. I'm on day 6 already and intend to do as many days as my appetite holds out but no more than 65 days. In April I will come off all the antibiotics so the experimenting will end then. Fingers crossed some good comes of this round!

Good, and then your next experiment will begin: I found when I stopped, I was still getting subtle improvements. I still am now.

If you will then be making use of your frozen embryos, the very best of luck!

Sarah

I am on my last day of a 15 day pulse. This is my 41st pulse although including the 73 days of continuous metronidazole this is my 55th pulse. I think 15 day pulses are probably to be recommended if one doesn't notice anything very much on the 5 day pulses.
The last 16 days have been noticeable for the absence of night spasms. I have needed zanaflex only twice and I haven't had any alcohol which usually helps rather better than the zanaflex to stop spasms though at least half a bottle of wine is required. I think that this is something of a record since I started getting spasms in the fall of 2004. This could mean the nerve has entirely died or it may be a temporary improvement. I don't have much faith in the constancy of improvements since the burning went but then returned. Indeed the burning paresthesia which appeared in my left calf in the 07 relapse has been very active of late. My walking remains very poor and I can only manage 400 meters.
I have added the antioxidant, superoxide dismutase (SOD), for the last 6 days. This is another enzyme which must be taken away from food. I believe from reports on pubmed that this antioxidant helps to prevent the breakup of hyaluronic acid by (bacteria activated?) hyaluronidases which seek to break down the protective barrier of hyaluronic acid to infiltrate other cells. I started out trying to find a hyaluronic acid scavenger as hyaluronic acid also prevents remyelination by sitting in the lesion but ended up with a hyaluronic acid protector! Curiously I have felt somewhat better over these last few days which I am obvioulsy attributing to this antioxidant, fool that I am. The SOD pills smell really nice too as do the combined serrapeptase/nattokinase pills that I continue to take with the lumbrokinase.
I furthermore added 500mg daily of penicillin V 7 days ago. This perhaps ought to be amoxicillin but the doctor misunderstood my request but it should be active against many bacteria.

I've discovered that we, MSers, have virtually no superoxide dismutase (SOD) in our cerebrospinal fluid unlike controls. We have even less of this antioxidant enzyme in our spinal fluid than other neurological diseases. I can't paste the link as it's a pay per view article from Science direct although I'll gladly send anyone interested the article.
I've been ramping up on this enzyme quite a bit and I'm feeling a bit better especially the burning paresthesia but that could also be that I'm not taking the flagyl. I've still only taken 2 zanaflex in the last 18 days. Long may this last.

Alex,

Thanks for the updates! I would be very interested to see the article. In my husband's genetic testing done this past summer the results indicated he was genetically an underproducer of SOD. He is currently taking GliSODin but I am always unsure of how much to give.

Hi Daisy,

Could you send me your email address? I don't know how to send attachments over the forum.
I take 8 of the 500iu of sod per day.

gibbledygook wrote:I can't paste the link as it's a pay per view article from Science direct although I'll gladly send anyone interested the article.

It sounds interesting especially with my interest in antioxidants. Can you post a link to a PubMed citation/abstract?

Thanks, NHE

Hi, I found this article on pub med <shortened url>. The above article is actually written by the same researcher as the article I have on pdf file! I found the pdf article through google scholar on around page 6 of the search terms superoxide dismutase multiple sclerosis.

Here's another link on SOD and the Epstein Barr virus;
http://www.jem.org/cgi/content/abstract/180/5/1995

SOD in Crohn's trial;
http://www.ncbi.nlm.nih.gov/sites/entre ... xed=google

SOD in mycoplasma infection;
http://www.pubmedcentral.nih.gov/articl ... tid=425088

I have ramped up consumption of superoxide dismutase (SOD) to 12 pills of 250iu each, sometimes I have taken 16. This is partly as a reduction in the painful paresthesia affecting my left leg seemed to correspond with taking the sod. However none of my other deficits feel much better so the SOD may not be doing anything very much after all. Still it's nice not to have the burning pain around the calf and the needling sensation in the knee area. I have also noticed much worse stiffness in the right leg in the mornings especially if I've had alcohol and have been feeling rather dehydrated. This seems to be more noticeable since starting SOD.
On second thoughts I think the SOD IS having quite a bit of an effect but at present it seems to be both calming the pain in my left leg and the phosphenes but increasing the stiffness in the right leg and a feeling of exhaustion from which I don't usually suffer. I continue with the antibiotics.