This Is MS Multiple Sclerosis Knowledge & Support Community

I plan to take this to my GP as soon as I can get in to see her. I have had MS for 10 years and have not had any success with treatments accept symptom relief with LDN. I am from the states. I will need scripts for:
doxycycline 200mg once daily
roxithromycin 300mg once daily (azithromycin 250mg three days a week is an alternative.)
Short courses of metronidazole will later be added to this regimen.

What is the dose on metronidazole?

When I start this I will post my results like the others are doing - I ordered my probotics today

My husband and I were so happy to hear another viewpoint on MS.

Thank-you

Hi Wiggy and welcome

Your attitude is wonderful! If you have not already been to CPn Help, you should. Happy to have you here.

Rica

Hello Wiggy,

Welcome as well. There are several things you need to do. Firstly, as Rica said, look up CPn Help

Next look up my husband's website, which you can find on CPn Help, but is probably easier to find here:

http://www.davidwheldon.co.uk/ms-treatment.html which it sounds as though you might have done already from your writing. On this, though, pay particular attention to the following page: http://www.davidwheldon.co.uk/supplement_rationale.html , as well as the adjuncts mentioned on the first page. Of these, a very good start before even getting going on the abx is n-acetyl cysteine or NAC.

Since you are from the States, you will not be able to get roxithromycin, so ask for azithromycin in the amounts you mentioned. Metronidizole, or flagyl as it is more usually known in the States, is best not started until three months or even longer into the treatment, but the amounts here are: 400mg three times a day, eventually for five days every thee weeks, but start off on just one day and build up from that.

Your GP might be very wary of all this, so glean as much info as you can from both sites before you go to see her. You are also quite welcome to email David or Charles Stratton and so is your GP.

Take your time to take in all the information and write to me if there is anything you are unsure about.

Sarah

Hi Rica,
Thank-you. I guess what has always kept me going is I have never thought I would have this forever - I know I will get over this disease, I just do no know when and my family. I am married with 1 child and they are very supportive. I will review CPn Help, I have been there a few times but I will admit, I am a little overwhemed with the whole process.

Hi Sarah,
I have been to your husbands website and I have printed out a lot for my doctor. I am lucky in that she is pretty open minded. For example, she wants me to come in every 2 weeks for glutathione IV's. I have done these and they help very much. Its hard for me to get to her office every 2 weeks.

However, last year I went in with sickness, affected my whole body, I was begging for antibotics and she sent me home with steroids. So convincing her that I need to try this will not be a walk in the park.

My sister (a nutrionist) is working on your husbands list of supplements - how long do you recommend being on the NAC before I begin abx?

Thanks for letting my GP email your husband - that will help and thank-you for making this available to us.
My appointment is next Monday and I have a lot of reading to do

Hi again Wiggy (cute stage-name!)

Sarah and David will give you great direction. I know how overwhelming it is- I fell into this last July. Concerntrate on Sarah, LifeontheIce-- (Barbara) and me to start - this is not vanity- we have MS and are in it longer with good documentation and lots of improvement. Won't take long and you wiil get a good feel: Barbara in her "story" on cpn, her postings here, Sarah's blog and my blog should give you a very solid foundation.

Rica

You can start on the NAC right away, it's easy to get at the local health food or even some pharmacies.
How long to be on it before starting other antibiotics depends on your reactions and tolerance for the NAC. You will probably get the "NAC flu" within a couple weeks of using it-- just like it sounds! If your load of EB's is high, you'll feel crummy for a while on just the NAC. When that stabilizes then start one of the antibiotics. Could be a couple weeks, could be a month.
The good thing about the NAC is that it will also protect your liver from the effect of toxins in the die-off. And it's a great antioxidant. Good luck on getting started.

Hello Wiggy,

A quick reply: its better to start on the NAC as soon as possible. It seems from what Jim says, it is much more readily available in the States than over here, where it is difficult to get serious amounts of any supplements. (Hey, I have just had a thought about why I seemed often to find the treatment easier than many people. I got the typical fluey herx reaction within two hours of starting abx and the same with the NAC flu, which I only started a few months ago. I'll go into this more somewhere else, when I've time.)

You can take it for a long time if you have difficulty in persuading your GP, in fact, a good thing is to build up a strong supplement base before you start. It will do you nothing but good. Don't forget that David is more than willing to discuss things with your GP if that will be a help.

Sarah

wiggy wrote:...she wants me to come in every 2 weeks for glutathione IV's. I have done these and they help very much.

I have missed something, I have never heard of this before; glutathione, yes, but by IV, no. How has it helped you specifically?

I go to an Alternative MD and she recommended it years ago but I couldn't find anyone using it at time. I would go in during relapses and they would give me IV pushes, during a relapse she would give 3/week, I think they ordered vials from Europe. It helped with fatigue and brain fog. It isn't covered by insurance or I would go in more often as she said I can come in for IV push every 2 weeks.
She read it helped people with MS.

The funny thing was I did not realize glutathione was sold in a supplement form, but my Dr. probably sells this too - I will find out Monday. I never had any bad reaction to glutathione. It was mentioned I may get NAC flu after being on the supplements it for 2 weeks - but maybe I never had enough in my system. I have only done IV pushes about 6 times total.

Wiggy - Thank goodness you found the right (and most unbelievably helpful) bunch of people to help you through this!
Now - NAC 'flu' can range from a drippy nose and general 'blah' feeling to an actual flu-like response, with all the achey feeling and stuffiness and malaise. Either way, it pushes the little beasties out of their comfy little hiding places and puts them on the road to oblivion, so it's worth a bit of an uncomfortable feeling for those of us who want to get well. I'm not in this to alleviate symptoms; I want to be cured.
Come on over to CPn Help.org and read, read, read. You can order your supplements online, so don't feel tethered to your new-age doc for supplies. I must say, the supplements made a world of difference for me even before I started the antibiotics, so get going on those right away.

You've got a built-in cheering section here! All the best to you!

Thanks MacKintosh,
I am so happy to find this group - My sister is ordering all supplements for me (she gets a good price for good supplements) I take a lot of supplements, but NAC, ALA and CoQ-10 are new to my regime.

I am just hoping I can talk doctor into scripts .

I plan to start supplements and add antibotics one at a time.

I am anxious to get started.

I will let everyone know how it goes.

I met with my Dr. today and she is Asian so there is a little language barrier. I took in one of David Wheldon's reports, his article and a letter explaining I would like to try the protocol.

She told me definitely start vitamins and she took a lot of blood, determine CPN infection, Epstein Barr, Yeast level............I explained that this does not usually show up positive in lab tests. She already ran lyme test and came up negative.

Her concerns were 1. Treating Secondary Infections, 2. Side Effects of Antibotics, told me she does not want me on them for a year. She wants to come up with a reason to start antibotics- an infection.

But she did not say no. I told her I will start supplements and build up system and discuss again in 1 month.


I think she will start me on them and I will report in on how it goes and if I can make some progress, she should keep me on them.

I told her she can contact your husband if she had any questions.
She took more interest in my gait, watched me walk.....
We will see

You might give your doctor the information on serology at CPn Help in the link CPn Help/?q=diagnosis_issues . Many people don't show up with positive serology, especially in MS where the infection is localized and not necessarily widespread. That in addition to the general inaccuracies of the test.

On the issue of the long term affects of abx: the long term affect of MS is devastating disability and death. Kinda puts a scale on things.

You can reinforce with her

• that these antibiotics were especially chosen to have minimal long term effects,

• that they are used long-term for other diseases simply as immune modulators,

• that the more toxic ones (eg flagyl) are used in pulses minimizing their harm potential,

• that the dual abx prevents resistance from arising in long term use,

• that the gut flora effects can be readily balanced by probiotic flora supplements

• and by anti=yeast medicatiohns (eg nystatin, diflucan) or herbs.

• That the use of NAC instead of amoxicillin not only further protects gut flora, but protects the liver as well.

She just needs a little support for gpoing against the grain of her training.

Jim - Your brain fog has lifted and left the building! That was one of the most succinct and direct descriptions on abx usage I have ever seen. I'm printing out your response to hand to the high-end neuro when I see him next month. Thanks again for being there for all of us.