This Is MS Multiple Sclerosis Community: Knowledge & Support

Just sent you a private message about this! Of course, we want to reduce your current physician's stress, at all costs!

_________________
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

Thanks for your help!

My doctors appointment was a success - we feel the letter we wrote really helped and will post a copy online later for others interested in the program to take to their doctor if needed.
She gave me my script for zithromax to take with doxy and told me call her if I have any problems.
She asked me if I noticed any changes. I do not think so, however my 6 year old daughter tells me I am walking better .
My husband wants me to keep daily journal. He said to my doctor he noticed it was easier for me to get into car this weekend. A lot of times he helps me in as I sometimes have trouble lifting feet up to get in - he did not help me this weekend.
All for now

Wiggy - What good news! Your doctor is a peach! And, of course, you can tell your husband he's right; a journal is a great idea. You will forget the little details as time passes and you will lose a great deal of your perspective, so a daily log is a help. I no longer see my great improvements because I've accepted them, yet when I read back over what I really went through, I see how far I've come in six months' time.

_________________
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

Wiggy, I second that!

A journal is definitely a good idea. I started one then got annoyed and deleted it all. Now there is much that I don't remember. David has to remind me and there is much I simply don't want to remember, I must admit.

Mac obviously has kept one, but I think she is much wiser than me.

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.

Hello,

My husband has recently been diagnosed with "early MS" and we would like to begin the Weldon/Stratton treatment as soon as possible. Is it possible for us to get an appointment with either of these doctors? If so, how does one contact them to make the appointment? We live in the US so it would be easier for us to see Dr. Stratton, but we are also willing to travel tot the UK to see Dr. Wheldon if we need to do so. My husband wants to speak with one of these doctors directly prior to starting the treatment. Thanks for your help!

Alykat

Alycat,
I know sooner is better than later regarding all treatments, I wish I knew of this one 5 years ago.

I think you should talk to Sarah, Dr. Wheldons wife and MS patient regarding treatment and seeing doctors. I emailed both Sarah and her husband Dr. Wheldon before I started treatment.

I am not sure where you live in States but some Dr.'s in the States do happily follow protocol.

I understand your husband wants to see one of the main doctors and if you can fit it in to your lives I think that is wonderful. My husband and I went to Germany 7 years ago to see an MS specialist. We turned it into a vacation and have great memories of that trip and all the people we met.

I went back to an old thread of Sarah's and she said the following:

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



You will find the protocol, Dr. Wheldon's email and many people here that can answer your many questions.
Best of luck to you and your husband and let us know what you decide to do.

Sarah should see your post soon and is very helpful - with time difference in UK she may be sleeping now but she will be in touch very soon.

Alykat - Welcome aboard the roller coaster. I, too, found antibiotic therapy very early after diagnosis and it stopped my downward cycle right in its tracks. Go to David WHeldon's webpage http://www.davidwheldon.co.uk/ms-treatment.html and send him an email. The email address is at the bottom of the pages there, at the end of the twelve pages of protocol information. He will respond quite promptly (which always amazes me). Come over to the CPn Help board, as well, where you will find several people who are seeing each of these doctors and they will help you, if you don't get quick response here. I know Sarah/Anecdote reads here more often than I and will likely step in any moment now! So glad you found us!

_________________
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

Not sleeping but painting! I've sent a private message with Charles Stratton's email. You can also write to David, whose email is at the bottom of his first page. Both he and Stratton are in regular contact. Stratton will probably be the best one to organise treatment because of the slightly different regulations regarding prescriptions in the two countries, but do write to them both because the more information you can gather the better. What he often does is oversee a local GP in the treatment, which means regular checks can be made without travelling to Vanderbilt all the time.

By the way, David's twelve pages have now been abbreviated into a smaller pdf file!

That's all I need to say, really, with Wiggy and MacKintosh springing into action. Best of luck to you both.

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.

Thank you Wiggy, MacKintosh and Anecdote for your prompt responses!

I plan to email Dr. Wheldon and Dr. Stratton as soon as I have completed this post. I have already visited www. CPn Help, and I will be posting there in the near future. Also, I have read all the information on Dr. Wheldon's web site, including his pdf file and the papers authored by Le Gac (very interesting).

Can anyone tell me what side effects they experienced on the treatment? Are the side effects there all the time, or only during the "pulse"? Will my husband feel ill for a year?

Thank you all for your responses - it's so nice to know you are out there and ready to answer questions!

Alykat

Alykat - My abx experience has been pretty uneventful. I think the earlier you catch this disease, the easier the abx protocol is to tolerate. I had the 'NAC flu', which was drippy nose, a feeling of 'about to come down with the flu' and a bit of lethargy, for a few days to a couple of weeks when I started taking NAC before getting abx prescriptions. The sinus draining went on the longest, the lethargy was just a few days. My sinuses seemed to be 'moving' inside, for lack of a better description, on and off for a few weeks.
Here and there (I've been on abx therapy since 06 October 2005) I feel 'pressure' in my ears, like when the elevator comes down too fast or when a plane is coming down from higher altitude. This seems to be azithromycin related. I've only had a few sporadic instances of feeling weaker or feeling like MS symptoms are showing themselves, but these last moments or hours and I think it's just areas that are healing, so it's no big deal. I have worked a physically and mentally demanding job every day since diagnosis, so you know it hasn't had much effect on my life, except having to down umpteen pills each day.

I have not had any of the mental angst described by others, regarding depression or debilitation when doing flagyl pulses. My mood doesn't seem to deteriorate, nor does my physical well-being. He will not feel awful for a year! He will notice mental fog clearing very quickly, which is a great lift for all of us trying to heal ourselves. Feel free to ask any questions you may have as you travel the road. Right now, get him on all the adjuncts. NAC hits cpn infection as soon as you start taking it, so that's something you can do even before starting abx, and the rest of the adjuncts will really help his body deal with the dying bacteria. Send him my best!

_________________
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

I have not started pulsing yet but I was concerned after reading some of the stories of reactions people were having - all my reactions have been pretty mild.

I started NAC one month before doxy and I had runny nose, some aches, they call it NAC flu, but I could still get through my day. This lasted a month.

I added doxy and my nose continued to run every morning but clears right up - I still have a runny nose every morning. Three weeks later I added zithromax and my new symptom is achey legs at night and stiff, spastic but these symptoms have not held me up at all. I still have my same daily routine.
I think the longer you have had the MS and where it strikes, mine has affected my legs, is where the problems arise. For example, if you have eye problems you may get eye pain, arm problem - arm pain, numbness....Symptoms you had before with a MS flare seem to come back, some people think they are having a flare.

I am actually feeling pretty good, energy is up, a little better than I did before I started the protocol but expect to get a little worse when I start pulsing and than a little better. I will be posting future improvements/symptoms.
I think your husbands advantage will be a newer diagnosis and less problems to fix, or bacteria to clear up. I have been diagnosed 10 years, I have some work to do

Will your husband feel sick for a year? No, everyone is different but I think he may experience some symptoms but should be able to function fine.
Good Luck

Hello again,

Thank you everyone who has contributed to this website; I'm learning so much from all of you!

As I stated in a prior post, my husband has been diagnosed with "early MS" and has decided to pursue the Wheldon/Stratton treatment. I have been corresponding with Dr. Wheldon, and he indictated we should follow the Stratton treatment as we live in the US. We plan to discuss the treatment with my husband's neurologist next week, however, we are concerned he may not be willing to write the scripts. We live in Connecticut; is anyone aware of a MD in Connecticut, Mass., Rhode Island or New York who is willing to write the scripts? Please let me know.

Also, my husband is currently experiencing his first MS "exascerbation". The first symptom, a numb foot, began about six weeks ago . By the time of diagnosis, which was May 4th, his whole body was numb, his balance was affected, he couldn't swallow properly and he was very fatigued. Thus far he has had three courses of IV steroids: the first course lasted for three days, and was followed by ten days without steroids; the second course lasted for two days and was followed by five days without steroids; the last course lasted five days and ended today. Unfortunately, there has been very little change in his symptoms, and he is very worried that his symptoms aren't going to subside. We asked the nurse whether his symptoms would go away and she said "hopefully they will". We would appreciate any guidance regrading how long it may take for these symptoms to subside. We have heard it often takes months.

Thank you so much for all your help and support.

AlyKat

Alykat, Oh, damn, I hate hearing that. I recall VIVIDLY what my first episode was like and it lasted nearly two months. NOT pleasant. I said the same thing; this seems like it is not ending. After talking to several friends and acquaintances about MS episodes, I learned it's not unusual for one to go on as long as mine, though I'm told a few days to a couple of weeks is common. Get him started on the adjuncts/vitamins right away, as NAC should have an impact straight off and the antioxidants will help ease what he's currently going through. D and B 12 (which are on the protocol) have a real effect on symptoms, too.

Try the CPn Help board for prescribing doctor info near you, or order off the net if you have to. I ordered off the internet and the prescription arrived the same day I found a local doctor to prescribe for me. Either way, I was going to start right away!

While I don't know how long his episode will last, I can tell you mine subsided within a few days, once I started taking doxy/azith. I did not 'ease into' it, as I was determined to kick this in the rump immediately, so I started azith and added doxy within four days. Within ten days, most all of my rapidly spiraling MS symptoms stopped in their tracks. Within two weeks, I saw noticeable decline in the numbness, tingling and spastic legs. It worked pretty quickly and I don't think it was a natural end to the episode; things were going from bad to worse with new symptoms almost every day. (Remember, I was a very early diagnosis, too.)

Tell him I'm wearing high heels (not that he'd want to), working every day, running, jumping, lifting heavy boxes, restoring a big old house and life is basically normal. And it's been that way since the end of the first month of abx. I'm seven months into it now and, with a few bumps in the road, it's been an easy ride. A far cry from the total devastation I felt in August last year.

_________________
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

Alycat,
Sorry to hear the news, Mackintosh is right, for me normal flares last 2-3 weeks but can last a few months. I was usually in bed for the first week and the next week symptoms would get more tolerable, or I could function better, but it was at least 3 weeks until I was better.
I have never tried the steroids, my doctor never prescribed them so I can't answer that question.
I can help you with a doctor if you want to come to beautiful MI (its 90 degrees today last week it was 50) but Mackintosh is giving you best advise to look for a dr. at cpn help as there are a lot of people on the program from all over the world at that site.
I hope he pulls out of the attack soon.