Feeling worse before you feel better could be the mantra for this treatment. You WILL revisit most of your old symptoms before it's over.
Sounds like you will be like me: I found this treatment within a few weeks of being diagnosed and I started it less than seven weeks after my first MS episode (optic neuritis). My rapidly cascading symptoms subsided within ten to fourteen days and I have been better and better ever since. I think, because I caught the incursion into the brain so early, my recovery has been a breeze and I wish you the same easy ride.
Are any neurologists taking notice?
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MacKintosh
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Wow, I almost fell over when I read that your neuro suggested treating you with abx. Surely he/she must be an angel who fell from heaven. or the word is getting out.
Your reaction is typical among those who start the abx and yes, I believe you are correct that the sooner you undertake treatment the better. My husband is one who started before any disability set in and he is doing remarkably well. Although, we were surprised at how strongly he reacted to treatment even though we didn't think he was that bad off.
I laugh now thinking that I thought he might not have any reaction and we would never know if it was working!! That reaction, similar to the ones you are feeling came swiftly and reassured us very quickly that, indeed, "Something" was happening.
I am glad to hear you are taking the NAC and would recommend highly the vitamin adjuncts to therapy listed on the Cpn site. This is without a doubt the most complete compilation of helpful vitamins I have ever seen (and over the last 18 months I am always researching, talking and looking for add- ons) anywhere. Anyone with MS even if they don't do abx would be smart to look at them.
Wish you luck,
Lexy
Your reaction is typical among those who start the abx and yes, I believe you are correct that the sooner you undertake treatment the better. My husband is one who started before any disability set in and he is doing remarkably well. Although, we were surprised at how strongly he reacted to treatment even though we didn't think he was that bad off.
I laugh now thinking that I thought he might not have any reaction and we would never know if it was working!! That reaction, similar to the ones you are feeling came swiftly and reassured us very quickly that, indeed, "Something" was happening.
I am glad to hear you are taking the NAC and would recommend highly the vitamin adjuncts to therapy listed on the Cpn site. This is without a doubt the most complete compilation of helpful vitamins I have ever seen (and over the last 18 months I am always researching, talking and looking for add- ons) anywhere. Anyone with MS even if they don't do abx would be smart to look at them.
Wish you luck,
Lexy
Hi Lexy
Thanks for your words of encouragement. I'm glad to see that others are doing well-that gives me a lot of hope.
The neuro has me taking other vitamins as well. I just didn't list them. I am doing a vitamin B12 shot every week, vitamin D, probiotics, and a few others that are in the formula with the NAC.
I am only doing the minocycline as of now. I don't know what else I'll be doing. I think it will depend on the results of the various tests took. I see him in about 3 weeks and then will know what other changes I'll be making.
I'll keep you posted.
Lori
Thanks for your words of encouragement. I'm glad to see that others are doing well-that gives me a lot of hope.
The neuro has me taking other vitamins as well. I just didn't list them. I am doing a vitamin B12 shot every week, vitamin D, probiotics, and a few others that are in the formula with the NAC.
I am only doing the minocycline as of now. I don't know what else I'll be doing. I think it will depend on the results of the various tests took. I see him in about 3 weeks and then will know what other changes I'll be making.
I'll keep you posted.
Lori
I realize this is an old thread - but the title made me click on it and I thought I'd throw in my experience.
2005 I suffered from extreme fatigue - hadn't really felt good in several year..... passed it off to life stress, etc.
October 2005
I developed patchy blindness in both eyes. MRI revealed 20 brain lesions (3 active & angry), & 1 spinal lesion. Spinal positive for OCB. Methyl Malonic Acid (assoc. w/B12 deficiency) was sky high (>550). They gave me IV Steroids for 5 days and started me on Copaxone (they recommended Avonex but I chose Copaxone).
I researched online and found the "Best Bet Diet" and began that strictly (continued that for 9 months without any "cheating") - also started an extensive regimen of supplements and vitamins.
Eyes recovered after 4 weeks of being unable to drive or read.
November 2005
I developed severe tingling in my lower legs and lower arms (stocking-glove), a night I would wake with my entire body buzzing, and my left hand began to lose strength and function. I continued to have debilitating fatigue.
December 2005
Some improvement with the diet, began Naltrexone (LDN) at the recommendation of my Neuro to try and stop the tingling which was driving me mad. Fatigue very high. Quit Copaxone due to multiple site reactions and minimal improvement.
February 2006
Some improvement in the tingling - had read about abx at this point and talked to Neuro and after signing a waiver, he agreed to prescribe.
Doxycycline 200mg - Fluish reaction, felt yucky, subsided within a week or two.
March 2006
Started Azithromycon 250mg - don't remember much reaction.
Began to feel better finally - fatigue lessened, mental fog cleared very quickly.
May 2006
Started Metronidazole 500mg - Ahhh man within an hour of taking the first pill thought I was going to DIE. Had to stop after 3 days of being unable to get out of bed for more than an hour at a time, felt utterly poisoned. Excessive clear nasal discharge, night sweats, chills - YUCK.
Continued pulses of Metronidazole - 5 days at a time, once a month.
Have been taking the LDN, Doxy, Azith, and Flagyl since 2006 - last Flagyl pulse was a breeze.
2006 Showed one possible new lesion, none enhancing.
2007 MRI showed no progression at all - NO new lesions!
My neuro is hesitant to buy in to the abx theory - but he refills my scripts and is very impressed with my progress and dramatic recovery. So sick, 20 lesions, rapid decline to my current NO symptoms and feel great...
I have seen Drs from the famous "Baird Clinic" / "Jacobs Neurological" in Buffalo NY - and they are 100% against antibiotics - or anything that isn't Avonex or Steroids.
Saw one in October 2005 and spoke to one last week - despite my vast improvement, the (former) Baird Dr. (had moved to my Neuro's group and I got her because my Dr. was away at a conference) still tried to convince me that Abx didn't work and that I should go on steroids immediately...!
WHY are neuros so quick to discount new ideas?
Particularly when there IS improvement?
If I was going downhill, I can see a Dr. trying to convince me to try something else - but with my vast improvement... What is the threat?
Especially if starting EARLY is so very important in preventing permanent disability.
BTW - did I mention that I now have NO symptoms and feel GREAT??
2005 I suffered from extreme fatigue - hadn't really felt good in several year..... passed it off to life stress, etc.
October 2005
I developed patchy blindness in both eyes. MRI revealed 20 brain lesions (3 active & angry), & 1 spinal lesion. Spinal positive for OCB. Methyl Malonic Acid (assoc. w/B12 deficiency) was sky high (>550). They gave me IV Steroids for 5 days and started me on Copaxone (they recommended Avonex but I chose Copaxone).
I researched online and found the "Best Bet Diet" and began that strictly (continued that for 9 months without any "cheating") - also started an extensive regimen of supplements and vitamins.
Eyes recovered after 4 weeks of being unable to drive or read.
November 2005
I developed severe tingling in my lower legs and lower arms (stocking-glove), a night I would wake with my entire body buzzing, and my left hand began to lose strength and function. I continued to have debilitating fatigue.
December 2005
Some improvement with the diet, began Naltrexone (LDN) at the recommendation of my Neuro to try and stop the tingling which was driving me mad. Fatigue very high. Quit Copaxone due to multiple site reactions and minimal improvement.
February 2006
Some improvement in the tingling - had read about abx at this point and talked to Neuro and after signing a waiver, he agreed to prescribe.
Doxycycline 200mg - Fluish reaction, felt yucky, subsided within a week or two.
March 2006
Started Azithromycon 250mg - don't remember much reaction.
Began to feel better finally - fatigue lessened, mental fog cleared very quickly.
May 2006
Started Metronidazole 500mg - Ahhh man within an hour of taking the first pill thought I was going to DIE. Had to stop after 3 days of being unable to get out of bed for more than an hour at a time, felt utterly poisoned. Excessive clear nasal discharge, night sweats, chills - YUCK.
Continued pulses of Metronidazole - 5 days at a time, once a month.
Have been taking the LDN, Doxy, Azith, and Flagyl since 2006 - last Flagyl pulse was a breeze.
2006 Showed one possible new lesion, none enhancing.
2007 MRI showed no progression at all - NO new lesions!
My neuro is hesitant to buy in to the abx theory - but he refills my scripts and is very impressed with my progress and dramatic recovery. So sick, 20 lesions, rapid decline to my current NO symptoms and feel great...
I have seen Drs from the famous "Baird Clinic" / "Jacobs Neurological" in Buffalo NY - and they are 100% against antibiotics - or anything that isn't Avonex or Steroids.
Saw one in October 2005 and spoke to one last week - despite my vast improvement, the (former) Baird Dr. (had moved to my Neuro's group and I got her because my Dr. was away at a conference) still tried to convince me that Abx didn't work and that I should go on steroids immediately...!
WHY are neuros so quick to discount new ideas?
Particularly when there IS improvement?
If I was going downhill, I can see a Dr. trying to convince me to try something else - but with my vast improvement... What is the threat?
Especially if starting EARLY is so very important in preventing permanent disability.
BTW - did I mention that I now have NO symptoms and feel GREAT??
Dx MS 10-05, multiple symptoms. MRI 20 brain lesions (3 enhancing), 1 spinal lesion, positive spinal, MMA>550.
Started: LDN 12-05, Wheldon CAP: Doxy 2-06, Azith 3-06, Flagyl 5-06.
Now: All is well, no symptoms! 4/2010
Started: LDN 12-05, Wheldon CAP: Doxy 2-06, Azith 3-06, Flagyl 5-06.
Now: All is well, no symptoms! 4/2010
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MacKintosh
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Robbie, First off, stopping progression is key. Then, killing the bacteria and clearing its sludge makes way for new, healthy cell growth. Then you still have to rebuild or reroute pathways. It may take time, but the time is better spent on abx than on continuing downhill.
I do think 'earlier is better' but I also believe in 'better late than not at all'. No matter what stage I was at, I'd rather have the option of abx therapy than not have it.
I do think 'earlier is better' but I also believe in 'better late than not at all'. No matter what stage I was at, I'd rather have the option of abx therapy than not have it.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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SarahLonglands
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Here's one who was "almost better late than not at all." I say "almost" because although I developed MS at 24, it was very benign and manageable until 2001, over twenty years later. Therefore many symptoms hadn't been in place for a great time, which is why at first I made great recoveries, but why it has slowed down greatly, whilst still not progressing at all. No matter how much I want to be perfectly better, I don't suppose I ever will be, but I can live with that, since my neuro thought I wouldn't even be here today, since in the end I was progressing so fast.
Sarah
Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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gibbledygook
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Not everyone experiences benefits from the antibiotics. I've been soldiering on for 2.75 years and have deteriorated. This recent deterioration may have been due to taking continuous metronidazole and using an infrared sauna or it could just be that not everyone with MS responds to antibiotics.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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MacKintosh
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Last night, I had a conversation with my prescribing physician about exactly that. We speculate that co-infections may be hampering the effectiveness of the treatment for a very few who perceive they have slow or no improvement.
This is not an excuse for 'abx is not working for me', but rather, a likely explanation. (The doctor had just ordered a bloodwork series for someone who isn't progressing as well as expected on abx.) I certainly think that's worth pursuing in such cases. Unfortunately, the possibility always exists that there is an unknown factor, just as h.pylori was unknown in recent memory and cpn was unknown (and still is, in many quarters). Maybe we'll get lucky and the missing puzzle pieces will be found soon.
This is not an excuse for 'abx is not working for me', but rather, a likely explanation. (The doctor had just ordered a bloodwork series for someone who isn't progressing as well as expected on abx.) I certainly think that's worth pursuing in such cases. Unfortunately, the possibility always exists that there is an unknown factor, just as h.pylori was unknown in recent memory and cpn was unknown (and still is, in many quarters). Maybe we'll get lucky and the missing puzzle pieces will be found soon.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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gibbledygook
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Well, I'm adding plaquenil to my metronidazole pulses and am trying a fibrinolytic, lumbrokinase to my daily regimen to see if the latter can break down the fibrin deposits which prevent oxygen and nutrients reaching sites of scarring. So far my symptoms all feel a little worse so am not sure what to make of anything! 
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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SarahLonglands
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Mac, coinfections could well be the cause in such cases, because I am not aware I had any.
Alex, you would have deteriorated very much by now without taking antibiotics. You haven't and at the very least have stopped progression. Your neuro knows that and told you to carry on with what you are doing. The recent little deteriorations are due mainly to overheating your brain and spinal chord with far infra red on top of continuous metronidazole.
Sarah
Alex, you would have deteriorated very much by now without taking antibiotics. You haven't and at the very least have stopped progression. Your neuro knows that and told you to carry on with what you are doing. The recent little deteriorations are due mainly to overheating your brain and spinal chord with far infra red on top of continuous metronidazole.
Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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MacKintosh
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