This Is MS Multiple Sclerosis Community: Knowledge & Support

NAC hit me within hours and I thought I had a horrible cold, even wrote a blog about it or a post somewhere. Mainly cold symptoms without the mental blur or a cold but a lot of fatigue. It passed in a day or less and never came back.

Rica

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2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

Thanks Rica,
I just went to CPn Help and I found a lot of stories, this is common.
My daugter turns 6 tomorrow and we have a big day planned so I think I will take NAC later in the day. I was just surprised it happened so fast, I thought it may take a few weeks to get into my system.

Wiggy, as Rica says, I felt very quickly as though I was coming down with a cold. This never materialised and I was just left with a rather runny nose for a few weeks. This was two years after starting antibiotics, but when I first started doxycycline I reacted the same way. Certainly take it later in the day on Thursday, after your daughter's birthday party!

Sarah

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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.

Thanks Sarah,
My sister-in-law came over yesterday and said, "do you have a bad cold"? - and she said this is not a good week for me to start new program as my niece will come into town from Texas and my brother (who is turning 40) will come in from Chicago - I call him my "little brother" as he is 13 months younger and we will have a big party. I think around 40 people. My Mom said this is the best time to start this new program as sooner is better than later and there will never be a good time. I am glad to be having NAC flu as I think it is a sign that I have some bad bacteria looming.

I will take all supplements except NAC until tonight and will do the same Sunday when we have a big party.

Yay, Wiggy!

Rica

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2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

Hi,
Back from my doctor, she will try me on doxy 200 mg for a month
she thinks she wants to rotate antibotics instead of giving me two at a time, for example she will try me on doxy for 1 month, run bloodwork and if all is ok give me zithromax for a month - I am not sure how she plans to give me flagyl - alone or in combination.

Sarah, I need your opinion on this - I think her concern is having me on two at a time. My husband and I explained how they are suppose to be given in combination at low doses to avoid resistence.
Will I still benefit?

I was happy to be given a script so I can get started. I will fill it on April 1st when my script insurance will begin.

I do not have any current infection, however, cpn did show up as old infection, or exposure and of course I was thrilled to hear this news.

My husband went with me and this seemed to help, we feel she is not convinced of cpn theory - but believes it could be lymes even though I tested negative.

I will begin new thread in regimes section in April when I start the doxy.

I plan to up my NAC tomorrow - I was initially taking 750 mgs 2 x a day and then cut back to 750 mgs a day due to NAC flu symptoms turned into bad cold. I think my body has adjusted to 750 so I will now up it.
Thanks

Hello Wiggy,

Good news that your doctor has agreed to prescribe, but you do need to take both the doxycycline and azithromycin together to act in synergy and to the danger of resistance. Perhaps your doctor should write to David about this. Also the flagyl or tinidazole should be taken with the other two abx. If there was no reason for this, they would be kept separate in the regime, because no microbiologist wants to prescribe unnecessary things.

The doses for all three are kept low and are quite easy to cope with.

You will only show current infection if you have something like a pneumonia. I showed very small levels of an old infection. Most doctors would not even consider treating this, but I started improving very quickly. David said I actually looked toxic at the time because my disease was so active, but it didn't show, which shows how difficult CPn is to culture. Whether she believes in the CPn theory or not, this regime is more than effective against lyme, so It doesn't really matter. I was completely negative for that. This is another thing which is very difficult to culture.

I'll just say here that I wasn't tested for anything until I had started treatment. It was all done empirically. Also, horrors, I have never had any bloodwork done because David reasoned that if I showed raised levels of whatever, he would be in a fix: either he would carry on and not risk backsliding or he would stop treatment and risk a relapse. I said I would rather not have any test. I hadn't turned yellow, so carry on.

Sarah

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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.

Sarah,
I will ask her to contact your husband. I will write her and explain that both antibotics must be taken together - I will look for more info. on CPn Help to send her. I will fill my script and work on this before next appointment.

Thanks

Wiggy - Oh, my gosh! Great news on getting the prescriptions, but you MUST take the antibiotics together! A month here, a month there, will only end with the antibiotics being useless as you develop resistance! Taking them together, as the Wheldon protocol and Vanderbilt work dictates, KEEPS you from developing resistance! Your doctor's fears will be what causes this to go badly. Insist, demand, protest, stalk her, but get her to email David Wheldon and he can explain it to her. Teenagers are routinely put on this dose of doxy for acne! It's not a big deal. Your doc is behaving as if an experimental drug is being dangled in front of her, for Pete's sake. You could be evil, of course, and just get the Azithromycin and hoard it, taking it only every Mon/Wed/Fri like the protocol dictates, and filling the doxy prescription more frequently or filling in with internet-purchased doxy. You can't do it the way she is telling you, though. So, deal with that later. Take your doxy NOW! Let's get this show on the road and welcome to the group of MSers who have gone into the tunnel and who are coming out the other end healthy!

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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

Hi Wiggy

How exciting that you have (almost) made it! Mack beat me to the posting of her dismay so I will forego that, but it is exactly what I would say. It has been 18 months for me on abx - sometimes 4 but at least 2 and usually 3 at a time. I am halfway through the tunnel. Last year I spent a lot of time looking at the ceiling and impersonating a blob. Today I did all my barn chores, then "mixed grain" -half- for 32 goats for a week which entailed carrying 9 - 50 pound bags of feed 50', lifting it to a height of 4' into a small concrete mixer, then emptying it into several 55 gallon drums. All this was just me. I could not pick up a 2 gallon bucket of water (16 pounds) last year - I tried. Then I cleaned the filters in our fish pond, did errands, bathed, went out to dinner, and did barn chores again (2 more hours). My life is almost back to where I was several years ago with my evergy level at least halfway.

My thoughts were what Mack said - hoard if you
need! But do it right. A thing I love is "You have one chance to do it right the first time". This is like the botany professor directing the kangaroo roundup.

Rica

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2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

Hello again, Wiggy,

I should have added that is is perfectly alright to take just doxycycline for a month, but no longer, because of the resistance thing. No microbiologist worth their salt wants to cause that. I took doxy for about three weeks whilst we were waiting to get roxithromycin from France.

Sarah

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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.

Sarah, Mack and Rica,

I feel so close but yet so far. I will do what I have to do, I am thankful we have some options.

I get so frustrated with our medical system and my husband puts me in check. I really like my doctor and my husband said she does not have time to do research, she was taught to practice medicine that has been proven by clinical trials.

I will write her a letter to thank her for letting me try abx. I will let her know I am aware of risks and take full responsility. I will explain that the antibotics have to be taken together to avoid resistence. I will give her David Wheldons email address again and send her the information that explains dual abx off of CPn Help. I would like her involvement so
1. If I improve she may want to help her other patients on this protocol
2. So she could monitor my progress
3. So my insurance covers - my husband said insurance will not cover med ordered on internet

My husband wanted me to ask you if I should post thread of progress on both CPn Help and thisisms? I think both is probably best so more people can view.

Rica - your recovery is amazing to me and we told my doctor about your and Sarah's EDSS score improvements - I can't lift 16 pounds right now.
My daughtered loved Sarah's scooter - I told her maybe I will be able to ride one day
My husband my doctor that it is because of everyone's improvement that I have to try this.

I have 7 brothers and sister but none are doctors, my husbands cousin is in med school she would write me scripts but can't yet.

I have told my neuro for years I am waiting for better meds (a medication that works) but they never have came up with any that have interested me except LDN.

I finally find a plan but have to talk people into it - seems crazy to me.

Thats all for now

Wiggy

Two neurologists have disowned me - the first because I stopped Avonex and continued to improve (it has been almost 4 months), the other did not give a reason except he does not like the abx and told me if I ever want to see him again I must have a referral, etc. My husband, Dr R, doesn't ask me much any more why I feel hostile toward neurologists.

You mention the same 3 reasons I do in the same order while asking my dr for his involvement. I really like your attitude.

Best luck. Rica

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2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

Rica/Wiggy - I agree. I gave my very young neuro a shot at this so he could be on the front line of the brave new world: one without the hopelessness of MS. He failed, once confronted by his much older and more entrenched partner. I also was sent by my family practice doctor to the chief of infectious diseases at a major Chicago hospital. She ever-so-politely dismissed me in a barely disguised condescending way. In a phone conversation with my neuro, in front of me, she said she had 'no idea why I was there' and snickered and said, "Maybe we'll all be treating MS with antibiotics in ten years. Yeah, right." I was there as a favor to my family practice dr, again to offer myself up as guinea pig and lab rat and had no need to be insulted when I was getting a bill for her 'services'.

I was willing to give up whatever extras I had to, in order to afford treatment. There was a point I was about to book a flight to see David Wheldon in order to get started on the abx protocol. As it turns out, with the help of a wonderful doctor who is now treating cpn patients and a prescription in hand, this is costing me thirty dollars a month deductible and about seventy-five a month in vitamins/adjuncts. So, for a bit over a hundred dollars a month, I can wipe out my MS. Without insurance, it would still be less than one hundred fifty a month. I'd cancel my cable and eat out less and it would be covered. This is what's most important in my life right now, bar none.

You stay with it; you are doing what's necessary and what's right. A year from now, when your brain and body are working SO much better, you will not understand how medical professionals can do anything BUT help us. I think, once we have regained our health and mental faculties, we must band together and force a change.

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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

Makintosh,
Would your Chicago doctor consider treating an Michigan MS patient on abx?
I think this may be a good idea for me if my doctor is not really interested in trying me on this protocol - If she doesn't want to combine antibotics I would seriously consider this. Once I start doxy I feel like I need to have a plan to start Zithromax and flagyl, a script close at hand.

Could reduce everyone's stress, mine, my husband, my doctor....

I have been telling my brother in Chicago that I will come visit for two years now.
Let me know your thoughts.