This Is MS Multiple Sclerosis Knowledge & Support Community

I have no symptoms right now (posted my regimen on the regimen board)... aside from occasional mild feelings on the tops of my feet and sometimes shins.
I have never had any numbness, weakness, muscle tremors, no disability. I realize I am very lucky and hope this doesn't offend anyone.

How do you test for cpn? Is there a definitive test? Does it always start with a chest cold?

Is Antibiotic treatment indicated for someone like me.... or is it used when there is progression or worsening?

Is it possible (through dietary and lifestyle changes and added supplements and using LDN to enhance your natural fighter cells - endorphins) for your own body to mount a defense to cpn and fight it off naturally?

From all I have read about MS... it is not a "disease" in and of itself... but rather a name they throw on you when your symptoms don't fit any other specific disease - even though many MS patients have VASTLY different symptoms and progression.

Some people get better on a gluten free diet - do they really have Celiac presenting neurologically?

Some people get better with B12 supplements - do they really have B12 deficiency?

Some people get better on the Swank Diet - do they really have an allergy to hard fats?

Then the antibiotic group = cpn, they improve with ab's....


I guess I am looking for an answer for myself... a way to be healthy again as everyone wishes for.... and I just am so unsure about everything.


Those on antibiotics - did anyone start with no disability?

Hello Mamahawk, first let me welcome you to the site.

I am the wife of David Wheldon, one of the two medical doctors mentioned by Katman in the Regimens section and the person who started this all off on ThisisMS and was instrumental in Jim Kepner starting CPn Help. You can read my story in both places, so I won't repeat it here.

I will endeavour to go through your questions one by one:

"How do you test for cpn? Is there a definitive test? Does it always start with a chest cold? Is Antibiotic treatment indicated for someone like me.... or is it used when there is progression or worsening?"

There is no definitive test, because the serology often shows up incorrectly. I showed up only marginally positive, but I very rapidly showed that the infection was a real thing. Since David has started treating for CPn infection, he has rated quite a few people empirically mostly to good effect. The times when less effect is shown, lack of complete compliance is the main indicator. The people who find the most benefit the quickest are those who are the least effected to start off with. Unfortunately none of them posts here, but David will verify that.

"Is it possible (through dietary and lifestyle changes and added supplements and using LDN to enhance your natural fighter cells - endorphins) for your own body to mount a defense to cpn and fight it off naturally?"

I can't speak for LDN because I have no experience of it, but to a certain extent diet and lifestyle changes can play a part, in the early stages. One person in the Vanderbilt trial cleared the organism spontaneously. In the light of my experience I would say it is better to fight it on all fronts straight away rather than waiting to be more badly affected and then have a longer haul to recovery. I am vastly improved but I still have quite a way to go.

"From all I have read about MS... it is not a "disease" in and of itself... but rather a name they throw on you when your symptoms don't fit any other specific disease - even though many MS patients have VASTLY different symptoms and progression."

I would beg to differ and say that MS is disease but it hasn't been fully accepted yet. Too many people have improved just by taking the appropriate antibiotics for it to be anything else. Supplements are all part of the regime and many are similar to those recommended in both the Best Bet Diet and the Swank Diet. Both of these can help, but all to often I have read about people, especially once the disease becomes progressive, who are not helped by these. They hold progression at bay, but that is all.

But at the end of the day, you must decide for yourself. Read through this: http://www.davidwheldon.co.uk/ms-treatment.htmlnd all the information on CPn Helpnd make up your own mind.

Sarah

Welcome.

mamahawk wrote:I have no symptoms right now ...
I have never had any numbness, weakness, muscle tremors, no disability

I have to ask, how were you diagnosed? [whoops.. just read you other post where it is explained...]

mamahawk wrote:I realize I am very lucky and hope this doesn't offend anyone.

I think you will find everyone here is glad for you, not offended. Maybe a little jealous, but happy for you.

mamahawk wrote:Is Antibiotic treatment indicated for someone like me.... or is it used when there is progression or worsening?

I had relatively mild symptoms until one major relapse. I wish i had started all my regimines BEFORE it happened. (ABX, LDN & Statins)

mamahawk wrote:Some people get better with B12 supplements - do they really have B12 deficiency?

B12 deficiency is part of the differential diagnosis. ie your doctor should check for this. I had a whole list of conditions (around 10-15) that I was tested for before I accepted MS as my condition.[your other post shoows it was done...]

mamahawk wrote:Some people get better on the Swank Diet - do they really have an allergy to hard fats?

I dont think it is an allergy, as much as a case of the saturated fats are just not good for myelin.

If I could give anyone any advice, it would be to do as much as you can as soon as you can. Dont wait for this disease to make its mark.

Sarah~
Thank you for responding. Your story is very inspirational and I had read it a month or so ago but just found this site this week.
I will go back to the info collecting focusing on ABX and will read through the CPn Help site ASAP.
I'm sure I will have some questions.... thank you for all help.

Testing for cpn seems unimportant due to the probability of false negatives.
I will read more of the diaries here and protocols people follow and make a plan then maybe post it woth any questions before beginning anything. I have 3 small kids who need me very much and have had a stressed Mommy for a few years and I was very sick after my hospital stay in October (Ha... now that I think of it, I caught a chest cold right after I was discharged....). I need to make a plan that works for all and need to read about other's reactions to the ABX.
I feel so good right now but as CureOrBust says - catch it early to prevent true disability and longer recovery.....
Thank you.... much to think on.



CureOrBust - Thank you.

I am back to researching the cpn and treatment.
My naturopath is very interested in this and my neuro is willing to work with me on anything that is not harmful. We have discussed the ABX route and he said as long as I understood the risks (no pregnancy, sun sensitivity) he would prescribe. He prescribed LDN for me already.

Will be back....

Mamahawk - You and I are in the same boat; few symptoms, a lot of advice to 'wait and see' and to do nothing in the meantime. If I had kids, I would have RUN to find someone to prescribe the antibiotics for me! (As it is, I started withing six weeks of MS diagnosis) It was hard enough to think MS might put me in a wheelchair or worse, but to think about losing my ability to be with and to care for my FAMILY, I just cannot imagine what's going through your mind! It has to be hard.

My advice is to do what I did, which is start antibiotics immediately. You will likely have little to no reaction, which is what's happened with me. The earlier you catch this, the easier it is to stop it dead in its tracks, and, apparently the reactions aren't major, because the infection isn't entrenched. Remember, damage can be done before you even know it and then there might be irrecoverable losses. I wasn't willing to waste one minute letting this miserable bacteria eat away at my future. Not one..... Wishing you all the best!

February 15th I started the Doxycycline. No major response but the tingling in my lower legs has returned with a vengeance.

I just picked up my 4.5mg script of LDN, will be upgrading from 3mg.

My neuro will not prescribe the azithromycin or flagyl yet, and he wants to see me next week. He also is making me sign a waiver which I did.
From what I read, starting slow is good.... but I do hope he doesn't give me a hard time about adding the other abx.

I am taking my vitamins with breakfast and dinner (I take quite a few) and taking the abx at lunch and the LDN right before bed.
I know the abx react to some supplements (calcium, etc) - I'm hoping that the 4 hours in between the vits and the abx will make this a non-issue?
Taking acidophilus with breakfast and dinner and as the filler for my LDN.


Questions:
Anyone see any problems with this schedule?

How much acidophilus is enough and when should it be taken?
Take the doxy for a month or so, then add the azithro 3x's a week, then another month or two and add the flagylpulses?
Do all three for a full year and then start to taper off?
What reactions should be expected? I am particularly concerned re: the flagyl
Any foods that should be avoided with the abx or LDN that anyone is aware of?
Should LDN be taken on an empty stomach?
Should the abx be taken with or without food?

Also....Can anyone give a brief explanation of statins and what the theory is behind them?


Thanks in advance for any help...

Hello again Mamahawk! Now why won't a few more neurologists do that? I'm sure many people would be willing to sign a waver for an officially unrecognised treatment. There is no harm at all in starting just with doxycycline, I did myself for about three weeks before we managed to obtain the roxithromycin from France. Your neurologist does need to add the azithromycin before too long, though, partly because it will work synergically with the doxycycline and partly because it will stop a build up of resistance.

Schedule: I think you are supposed to take LDN fairly close to bedtime but I'm not aware of any foods that should be avoided with it. Someone is welcome to correct me on this. As to how long you take the three abx full-time, I think it will depend on the reactions you have to them. Contrary to popular belief it is not necessarily all irksome. Apart from feeling like I was about to come down with flu at first, and a bout of reflex sympathetic dystrophy at about six months, I felt very little. Within this I gradually improved and had no adverse events, although it felt sometimes as though I was travelling along a slightly bumpy path. What you experience will depend on you, but don't think it isn't working if you don't feel anything in particular.

Best not to take doxycycline on an empty stomach: you might well regret it! Just avoid calcium in food or supplements within two or three hours each side of taking it. The small amount of milk you might have in a cup of coffee is OK though.

By and large flagyl just made me feel very tired and somewhat weepy, but it only has an eight hour half life so this cleared up quickly after each pulse.

As to acidophilus, take as much as you feel you need, but not with any abx! So take some with any vitamins at breakfast and some last thing at night with the LDN, or an hour before or whatever. You'll work it out eventually but don't worry too much bout it. Just remember acidophilus and abx don't mix and only a minimum of calcium within two to three hours of doxycline as well.

I'll leave statins to someone else except to say that they are somewhat stalling of CPn.

One last thing, welcome to the club!

Sarah

Mamahawk - Wonderful news! My neuro wouldn't have thought to offer me a waiver; I think he was too busy backpedaling once his older partner lectured him about 'dangerous' abx. Your doctor is to be commended.

Your schedule sounds workable. I started by taking abx in the morning, vitamins around ten, then the other half of the vitamins around six, b-complex, calcium and magnesium around nine, then melatonin shortly before bed. Now I sometimes reverse the morning abx and morning vitamins (depends how much time I have before work), but I never take abx on a completely empty stomach (makes me a little queasy if I do). For some reason, CoQ10 seems to help my 'vibrating' feet, so I take a little extra if the feet are being unusually weird. LifeontheIce mentioned B-1, I think, for spasming, but confirm with her.

LifeontheIce is a doctor and she recommends no dairy within an hour or two of abx. Now I know why. Thanks, Sarah. It never dawned on me it was because of the calcium inhibiting the absorption of the abx!

You're on the right road, and, since you had an immediate response when you started the abx, you know it's attacking something because those legs are reacting! Good news. Keep us in the loop, MacK

Thank You Sarah and MacK~~
I really do like my neuro - very compassionate, open minded, unpretentious... but very cautious as well. He is actually how I heard about Naltrexone. Many doctors are so stuck in their "I'm the Doctor" mentality (after diagnosis saw a highly-respected, highly recommended 'MS Specialist' and she was simply awful and oh so cold-mannered) I am very relieved to have found him so early.

The legs are somewhat better today... but yesterday was pretty maddening. It feels as though I have very very tight stockings on and the tingling is almost unbearable. Deep, hard massage helps as does jumping, of all things. It seems to short-circuit the tingling for a while.

Not sleeping very well since starting the abx either which I expect will only get worse when I up my LDN tomorrow night to 4.5mg. Ugh.

The thought that I can prevent any permanent disability and be free from a downhill prognosis is so exciting - that may be playing into my sleeplessness also.


Will keep posting with any changes and updates.

OOPS noticed in my other post I stated I was taking the acidophilus w/lunch - meant dinner.... I just edited it.

I take the acidophilus with the vitamins at breakfast and dinner and as the filler in the LDN - not at lunch - which is when I take the abx.


Will I take the Azithro at the same time as the doxy when I add that in 3 times a week??

How about the Flagyl pulses?

Can all 3 be taken at the same time of day when that time comes?

I take roxithromycin rather than azithromycin. This you have to take every day, but I just take both doxys and both roxis together with breakfast. Then the first tinidazole now, or flagy originally straight away after. Also, you might try some melatonin for sleeplessness. I get it from Iherb, just one 300mg timed release, about 30 minutes before going to bed. It works a treat. http://www.iherb.com/melatoninsntr.html

How about a skipping rope for the tingling legs?

Sarah