On Wheldon regime and loving it

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

On Wheldon regime and loving it

Postby GPlover » Mon Apr 25, 2005 5:40 am

Hi Everyone,

This is my first post although I have been eager to post earlier. Just wanted to make sure that the positive changes are not temporary and are here to stay.

A bit about me: I am a 33 year old woman with 3 young children, 1,2 and 5 years old. I am not diagnosed with MS but have had a lot of MS like symptoms since august 2004. I am a Taurus and stand with both feet on the ground. This will be important later when I talk about how the GP's think my symptoms are psychosomatic. (Sorry about spelling and grammar, I am not a native english speaker.)

I had a stubborn lower backache since about February 2004 but thought it was due to the pregnancy. I had my third child in May 2004 but the backache didn't go away. Shortly after that in August two fingers on my right hand went numb for several hours. Then in October our whole family, including me, suffered from an upper respiratory infection with a very bad throatache. After that in November one day I started feeling dizzy and this dizziness has been there for hours every single day coming and going throughout the day accompanied by blurry vision and mental fog. A few weeks later my right hand and right foot started to tingle and felt heavy for hours. This would come and go throughout the day. My left ear became very sensitive to noise and popped once in a while. I also started to feel a lump in my throat which was a chocking sensation and tingling on my face.
I went to see my GP (new one since we just moved to the area). He checked my reflexes, and done bloodwork which all came back normal. I also told him that I had sufferred a bit from postnatal depression in the summer after my son was born.
So he came to the conclusion that all these symptoms were from my depression and wanted to prescribe me antidepressants.
I told him that I wasn't interested because I knew my body. I might have been feeling a bit low, but there was no way my symptoms were from postnatal depression from last summer. He was quite offended :?

I started checking the internet and insisted on an MRI which came back negative. (What a scary experience though) My GP had a grim on his face :x How nice. Not only I have the responsibility to look after 3 children with all these symptoms but now instead of helping me and supporting me both the neuro and the GP was saying that I am a psycho. (Hence my nickname here.) The GP tried to convince me again about the antidepressants, but I saw no point as I wasn't even depressed!

I was so scared in December that I cut out all wheat and dairy from my diet immediately and started taking fishoil, curcumin and other supplements recommended for MS and lived on greens and fish. I lost so much weight although I only had a little extra even after 3 kids. My backacke got a lot better from all the inflamatory stuff I was eating.

Despite this drastic change in my diet my syptoms were there more and more often lasting longer and I even got a new one in January: muscle twitches.

Then I found this webpage and read about Sarah and the David Wheldon therapy which made a whole lot of sense even for me non-medical person. So I decided to give it a try. It definitely sounded better than taking antidepressants!
I went to see David who is a wonderful person and extremely helpful and started on his treatment just over 2 months ago. His attitude, understanding and devotion to help was amazing especially compared to the GP and neuro above! (My GP refused to give me an NHS prescribtion, so I had to fund my medication.)

During the first week on ABX my backacke of one year came back very badly for several days, then it gradually disappeared and NEVER came back since. (My husband likes to think it's his massages that helped, so let him believe that. :) ) I also felt extremely tired and felt pressure in my lungs which made me cough. During the second week all these stopped and I had 3 or 4 days without any symptoms. Even my dizzyness was gone which did not happen since November! Unfortunately a few days later I got a cold. Luckily it was quite mild but during it my syptoms did come back. During the first month the lump completely dissappeared from my throat.

In the following weeks it was like a roller coaster: for days I could feel very little of my symptoms if any, followed by a few days of worsening (but still lighter than before starting treatment.) This could be very confusing, until one figures out a pattern in it.
As weeks go by the periods without symptoms get longer and consequently periods with symptoms get shorter and also much lighter.
Now after two months the only symptoms I have left is an occasional little bit of heaviness in my right hand and foot that's barely noticable and is only there for minutes as opposed to hours and hours before the treatment. And the muscle twitches which are almost unnoticable too.
The dizzyness I had since november completely dissappeared about 3 weeks ago. Funny enough I just noticed this a week ago, that's how much I miss it :wink:
Seeing these improvements I soon gave up on my drastic diet (I love fresh bread) and the pounds of supplements I was taking and now only take the ones recommended by Sarah. I still eat quite healthy though.

Since starting the treatment I am also experiencing occasional aches in different bones and joints in my body. They are quite sharp at times but thankfully only last for minutes.

I just finished my first pulse of metronidazole. I didn't experience anything with it. That could be because my bacterial load is not very heavy or maybe more bugs will be killed with the second or third pulse. We will see.

I am extremely thankful to Sarah and David for helping me and helping others and be totally devoted and unselfish in doing that. All those textbook GP's and neuro's should give back their diplomas and do something that doesn't involve helping people.

I will keep you updated.

All the best to everyone!
Timea
User avatar
GPlover
Getting to Know You...
 
Posts: 20
Joined: Sun Apr 24, 2005 3:00 pm

Advertisement

wow!

Postby treez » Mon Apr 25, 2005 7:47 am

I think that is a super post.

I would be on the Antibiotics if it were easily feasable. Unfortunately, it's not 2500 miles to California is the closest Dr. I could see. We'll keep that in the back pocket for now :lol: .

Another positive pseudo.........antibiotic trial.........that's working!!

Sure wish I could get some locals to read all these!!

Treez
User avatar
treez
Family Elder
 
Posts: 128
Joined: Tue Jul 27, 2004 3:00 pm
Location: Michigan, USA

Re: On Wheldon regime and loving it

Postby Daunted » Mon Apr 25, 2005 7:51 am

Excellent post. I've had three negative MRIS (in sixteen months) at this point so I can relate to your frustration. (Although once I had positive VEPs I wasn't seen as a 'psycho' from that point forward).

I've been on the protocol for coming up on four months, and haven't had as dramatic of results as you, but my doctor tells me that everyone reacts quite differently to treatment.

Please do keep us updated!
User avatar
Daunted
Family Elder
 
Posts: 271
Joined: Sun May 30, 2004 3:00 pm
Location: University Town, USA

Postby GPlover » Mon Apr 25, 2005 8:25 am

Treez,

Do you really need a doctor? You could order the antibiotics on the internet. I ordered my second lot from a Canadian drug delivery company which was much cheaper and they sell the proper brand without prescription. I am not seeing any doctors other than the first visit with Dr Wheldon who based on my symptoms evaluated my case. Perhaps you could e-mail him.

Timea
User avatar
GPlover
Getting to Know You...
 
Posts: 20
Joined: Sun Apr 24, 2005 3:00 pm

Antibiotics

Postby treez » Mon Apr 25, 2005 10:32 am

I suppose you could get by without ever seeing a Dr. I was always under the impression that you needed a prescription even for internet orders. There is always the fear that you're getting what you think you're getting too.

I guess I'm just a little bit scared to get involved in that regimen without even having a consult such as most here have done.

My wife is a pharmacist, she has looked over all the popular regimens posted here, specifically Dr. Weldons'. She hasn't seen anything contraindicative, although there are some questions as to why a particular med. is being used. Remember she is a pharmacist not a cellular biologist. Technically, this whole treatment is "off label" though.

Don't get me wrong! I buy into this enough that if my current treatment regimen seems that it is failing, I'll make a trip to CA. (Dr. Stratton). I haven't done any real checking other than this board though.

Many people say "your wife's a pharmacist? Well there you go, you can get any drugs you want!" She works for a large chain, dispensing drugs without a legitimate presciption is probably the easiest way to lose her job. The only thing easier that comes to mind would be dispensing C2's(controlled substances). With that one you could lose your job AND end up in jail!

Treez
User avatar
treez
Family Elder
 
Posts: 128
Joined: Tue Jul 27, 2004 3:00 pm
Location: Michigan, USA

Postby SarahLonglands » Tue Apr 26, 2005 7:58 am

Hello Timea,

I'm pleased you found David so helpful and not out of a textbook! :)
The trouble with neurologists is that there are so many other things for them neurological things for them to specialise in that many appear to be totally unhelpful. As for GPs, they will have seen far more people who actually are suffering from post natal depression than anyone with MS. I think that mine, a member of one of the largest practices in town, only has about three MS patients. She doesn't know how to deal with me and keeps asking me how I got there, as though she can't believe that I walked. We are less than half a mile away, if you trespass on the private school grounds.


In the following weeks it was like a roller coaster: for days I could feel very little of my symptoms if any, followed by a few days of worsening (but still lighter than before starting treatment.) This could be very confusing, until one figures out a pattern in it.
As weeks go by the periods without symptoms get longer and consequently periods with symptoms get shorter and also much lighter.


I'm glad you mentioned the roller coaster: hopefully for you it won't go on for too long, but people who have had the disease for longer or are harbouring more germs find it goes on for much longer and this can make them very down, understandably because they don't know what is going on.

Take care,

Sarah
SarahLonglands
Family Elder
 
Posts: 2109
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby GPlover » Tue May 24, 2005 2:05 am

I just finished my second pulse of Metronidazole a few days ago so I thought I write an update.

Before starting the pulse I almost had no symptoms at all. During it my symptoms got stronger, dizziness came back, migrating joint ache came back and I experienced 2 new things: pain behind both eyes and night sweats.
Now, almost a week later things are on the way of disappearing again.

One other thing: I have been experiencing abdominal pain on my left side just under the ribs that's very minor. It got worse during the pulse though. Anyone else on antibiotics has the same???
User avatar
GPlover
Getting to Know You...
 
Posts: 20
Joined: Sun Apr 24, 2005 3:00 pm

odd abdominal pains

Postby gibbledygook » Tue May 24, 2005 8:38 am

Hi!

I have also recently finished a 2nd pulse of flagyl and I do remember experiencing quite sharp but brief pains below the ribs but these stopped after stopping the pulse...I think they were related to the intestinal flora situation which was definitely not good and required anti-candida treatment last week...
hope this helps.
User avatar
gibbledygook
Family Elder
 
Posts: 1414
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Postby GPlover » Wed May 25, 2005 2:42 am

Hi Gibbledygook

Many thanks for your reply!
How did the doc diagnose that? And what treatment did you get? I am eating yoghurt and acidophillus tablets daily but maybe not enough....I do not have any candida symptoms though. Maybe I should get myself check out anyway.....

Thanks again!
User avatar
GPlover
Getting to Know You...
 
Posts: 20
Joined: Sun Apr 24, 2005 3:00 pm

Postby gibbledygook » Wed May 25, 2005 3:55 am

Hi GPlover!
I just bought over the counter produce called canestan. I'm afraid I don't know the generic name but it is a classic treatment option for candida in the UK. Once one has experienced this delightful yeast one never forgets it so I don't need get a professional diagnosis. Still if you've never had an overgrowth of this yeast then you won't know what to look for. It feels something like ants in your pants!
Keep downing the acidophilus and you should be fine. I stopped taking my vitamins and acidophilus and went on a bit of a alcohol session so I don't think I had any nice gastric bacteria left to counter the candida.
User avatar
gibbledygook
Family Elder
 
Posts: 1414
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Postby SarahLonglands » Wed May 25, 2005 9:56 am

Well, let that be a lesson to you!! :wink:

Hmm, I shouldn't talk too soon, should I?
SarahLonglands
Family Elder
 
Posts: 2109
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby Daunted » Wed May 25, 2005 10:07 am

Lesson: Skip the charcoal, take a day off from supplements, drink alcohol, you can even skip a dose of antibiotics, but never, ever, ever skip the probiotics!
User avatar
Daunted
Family Elder
 
Posts: 271
Joined: Sun May 30, 2004 3:00 pm
Location: University Town, USA

Postby GPlover » Tue Jun 28, 2005 10:11 am

I am now 4 months into this treatment and just after my 3rd pulse on metronidazole. After the 2nd pulse my symptoms were almost completely gone, only noticed a bit of heaviness in foot or arm a couple times a week and only lasted for a few mintutes. However this 3rd pulse brought them all back, especially the muscle twitches all over my body, migrating pain in joints and pain behind my eyes. I also got something new which I am not too happy about: occasional myalgia in my right leg. I don't know what to make of this one :?
Also, after this 3rd pulse symptoms came back much stronger than after the first or second and don't want to go away so quickly this time which is a "bit" worrying.
But I consider myself lucky because other than symptom flareups and a bit of abdominal pain metronidazole does not give me a hard time at all, oh and apart from insomnia.

As I am not diagnosed with anything I am still trying to do that "DIY" :lol:
I recall having a rash on my leg several years ago which was there for about a month. I read a little about lime and how it can produce very similar symptoms, and I am suspicious....but I don't remember any other symptoms before my neurological ones started last November and that rash was ages ago (10-15 years ago)...so I don't know.

Does anyone know a reliable place in England to get tested for Lyme?

And if it is lyme, does anyone know if I should alter my current therapy or is it just as effective?

Thanks
Timea
User avatar
GPlover
Getting to Know You...
 
Posts: 20
Joined: Sun Apr 24, 2005 3:00 pm

Postby SarahLonglands » Tue Jun 28, 2005 10:53 am

Hello Timea,

First of all, this treatment is totally effective against lyme disease, so I really wouldn't bother about being tested for it. It is just as difficult to test for as CPn. I was tested for both, lyme came back resoundly negative and CPn vaguely positive. Before I met David, I had done all sorts of unwise things in lyme endemic parts of France, so maybe that was part of the problem. :oops: I don't know.

As to the metronidizole, the third pulse for me was the worst by far. The muscle twitches, migrating pains par excellence and so on. Eventually I was hit in my right arm by the most excruciating pain which moved from my shoulders, went away, then returned a few minutes later in my wrist, then my elbow, then back to my shoulders............. This lasted at its worst for about two weeks, then gradually lessened. Oh, yes, legs as well, mainly the right one, but my arm was so bad that everything else kind of paled into insignificance. I was using a trekking stick for balance purposes, normally using my right arm, but the pain became so bad that I just couldn't use it that way round. I remember that when I went for my second scan at six months, my shoulder was still causing me some pain, because I remember the radiographer seeing me trying to get comfortable and asking me if I was OK.

With any luck you should find things easing up from now onwards. I can't say that for certain, of course, because everyone is different. Remember that if you are really worried about something, drop David a line. That's what he is there for after all! :wink:

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.
SarahLonglands
Family Elder
 
Posts: 2109
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby GPlover » Wed Jun 29, 2005 3:00 am

Thanks Sarah! I just don't want to disturb David with my little things when there are so many out there with problems much worse than mine.
But thank you, again!
User avatar
GPlover
Getting to Know You...
 
Posts: 20
Joined: Sun Apr 24, 2005 3:00 pm

Next

Return to Regimens

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service