abx

Tell us what you are using to treat your MS-- and how you are doing.

abx

Postby wiggy » Thu Apr 06, 2006 5:40 am

Here we go , I started doxy on Sat. working up to 200 mgs by yesterday as pharmacy wanted me to work up slowly due to questionable allergy problems to tetracycline as a child.

So far so good, I felt like I was coming down with cold first day and it went away.

I meet with my doctor next week to discuss addition of zithromax, I wrote her a 3 page letter explaining I need to take antibiotics together and I need to do it right the first time.

Here is where I am at for those that do not know:


I have been diagnosed with MS for 10 years and I am over a 6 on EDSS scale. I am from Michigan.
1994- began having problems - right foot drop
1996 - finally diagnosed
1996- Swank Low Fat Diet
1998- To Germany to see Dr. Hans Nieper, Calcium EAP program for MS, 1998-2006
2003-Copaxone for 1 year, 3 attacks and still have bruises from injections
2004-current LDN, worked up to 4.5 mgs

No changes on MRI for past 2 years, stable
Prior to LDN having MS attacks every year.

Also tried histimine and estriol with no results.

Physical Therapy Exercise- 3 x a week

Current Situation:
Walker - all the time - in home
Scooter - Long Distance - outside of home

Diffculty standing for long periods of time 45 min. longest without sitting down.
Difficulty putting socks and shoes on -
Difficulty tying, with buttons, cutting tough foods (meats), typing

Started Wheldon protocol supplements 1 month ago and just beginning antibiotics.

I will let you know how appointment next week goes.

I hope everyone is doing good.
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Postby SarahLonglands » Thu Apr 06, 2006 6:12 am

Wiggy, you've started! I thought you would probably be alright with the allergy thing because very few people have an allergy to doxycycline compared to the earlier tetracyclines. You will be alright just with doxycycline for a few weeks: it took me about three weeks before I managed to get roxithromycin imported from France. We didn't know then that azithromycin was equally good. If your three page letter doesn't do the trick, get her to write to David or to Stratton. Very best of luck: you are nothing if not determined!

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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Postby wiggy » Thu Apr 06, 2006 2:20 pm

Sarah,
Yes, you were right - no problem. However, I went to pick up script and I was told I had to talk to pharmacist :o
I buy LDN mail order from recommended compounded pharmacy out of Chicago and I have not been on any other meds except Copaxone - but in my profile it was listed that I am allergic to tetracycline - so he told me be careful and work up my dosage and what allergic signs to look for.

I thought one more obstacle but I again I made it through :D

Yes, determined - I have always been, Its what keeps me going.

Take Care
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Postby Arron » Thu Apr 06, 2006 7:54 pm

Hi Wiggy, thank you so much for your detailed report, and we wish you good health and good fortune in your experiment!
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby wiggy » Fri Apr 07, 2006 5:37 am

Arron,
Thanks for your support.

I am thank-ful for this site as I didn't know abx existed until I came here and started reading the testimonials.
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Postby MacKintosh » Fri Apr 14, 2006 5:37 pm

Wiggy - Best of luck on this journey. I know what you mean about the 'see the pharmacist' message. I have my presriptions filled at three different pharmacies, as my prescribing doctor was concerned I would be denied if all three were at the same place. As it is, one pharmacist insisted on verifying the prescription for zithro, as he said it was very rare to receive one for monthly refills, instead of a one-time shot. Scared me, but the doctor promised a prescription a month (by phone) if I was denied monthly refills and the pharmacist agreed to go with the one prescription, refilled eleven times. I can imagine the fuss if I came and filled three antibiotics every single month in one place.
I've been asked a couple of times what I take it for, which is probably a violation of a bunch of privacy laws, but now I just say chlamydia pneumoniae infection and they nod and say 'oh'. I figure they probably run to the computer to find out what that is as soon as I leave the counter! :D
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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Postby wiggy » Sat Apr 15, 2006 8:52 am

MacKintosh,
Thanks for the information, when I get my next script I will also be following your Dr.'s advice of finding other pharmacies. Anything to make life easier. I think the Costco pharmacist was also interested in why I was going on Doxy, I almost told him I really want clear skin :lol: while sitting in my scooter.

I think I will also use the "cpn infection" if I am asked in the future.

My appointment is next week with my doctor - will hope all goes well.

Have a great weekend. It is 72 degrees in MI today!
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Postby MacKintosh » Sat Apr 15, 2006 1:54 pm

Wiggy - Think positive about your doctor visit and remember you can always do a long weekend and visit my doctor and your family, too, if no luck up there. Something like eighty degrees here today. Quite bizarre.
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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Update

Postby wiggy » Fri Apr 21, 2006 4:12 pm

This is just an update - I have been on doxy for 3 weeks and the only side effects were runny nose in morning which clears up by afternoon, a little nausea and some stiffness/pain in calves in morning. It has not held me up at all.

My sister-in-law said my energy is up, it was Spring Break this week and my daughter and I were busy everyday.

My husband noted last weekend he did not have to help me into car. I have problems lifting my feet up high enough to get into car and he helps me on weekends making it quicker to get in car.

I started zithromax today and will let you know how that goes.

Have a great weekend everyone!
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update

Postby wiggy » Mon Aug 21, 2006 3:28 pm

I saw my doctor this week and noted the following improvements that come and go but so happy to have them:

more energy, less brain fog, better fine motor skills: buttoning, tying, cutting, less spascity, better gums (use to bleed a lot).

We discussed starting my first pulse in Sept. and she picked 9/11 date and we both laugh - told her I am not sure about starting on that date and she said she likes the date as we will never forget it. So 9/11 it is.

It showed up that I am running anemic in bloodwork - and this happened to me before a lot before starting abxii so she is having me triple vit. C and come in for b-12 shots every 2 weeks. I do not eat red meat and my mom says I probably do not get enough iron and I do not take iron supplement - which I will add if I need to - she will check again in a month.

My blood pressure was 110/70

all for now..
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Postby MacKintosh » Mon Aug 21, 2006 3:36 pm

Wiggy, In addition to the supplements list, I add in a multivitamin with iron, as I also have had an iron deficiency most of my life. Maybe that will change after the antibiotics clean up the mess that is cpn, but I'm trying to help my body all I can in the meantime.

I'm glad you posted this here as well as on CPn Help, as we tend to forget to post our successes here, of late. After all, this is where most of us learned about antibiotics and cpn!
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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Postby wiggy » Mon Aug 21, 2006 4:27 pm

MacKintosh,
I have a multivitamin here and it has iron as well - I stopped taking this when I started the protocol but I will add it in - its just one more pill and if it maintains my iron level it is so worth it.
I post here as well as this is one of my favorite sites because I found out about abx here.
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Postby SarahLonglands » Wed Aug 23, 2006 11:27 am

Wiggy, if you are anaemic, the amount of iron in a multi-vitamin is neither use nor ornament. What you need is a good, easily digested source of iron such as the chelated iron supplement in this, from vitacost: http://www.vitacost.com/NSIFerrochelIron. This is not like the small red ferrous sulphate tablets forced on pregnant women in the UK, it will not make you constipated or bloated.

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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Postby MacKintosh » Wed Aug 23, 2006 12:30 pm

Sarah, I'm so glad you posted this. I will alter my intake, as well. Just about to make an order with Iherb today, so I'll just add it in. Your suggestion on the B-12 'cherry' flavor has made me a happy camper; now I can tolerate the taste of the stuff, so I use more of 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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Started 1st Flagyl Pulse Today

Postby wiggy » Sat Sep 23, 2006 5:25 pm

I started my first pulse today - I finally felt much better today and do not want Sept. to slip by without starting my first pulse. My timing isn't good as next week is going to be a busy week after my daughter gets out of school - she has activities that she has to be at M-Th. which is unusual but I have asked a few other moms to help me out if I need it.

I am starting slow as I want it to be as easy as possible and I have a feeling I have plenty of cpn to kill. I will plan to add more every pulse and if flagyli doesn't agree with me - I will be asking for tinii.

I will let you know how it goes.
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