Jan Figtree2019
Submitted by Jan Figtree2019 on Sat, 2019-11-23 12:46

Really glad to hear your eyes are healed.   

Have you ever had any retinal tears (before starting the protocol).

Thanks for kind words about Borzou .... he was a lovely dog (half Shiz-tzu and half poodle)... loved by family and friends.  Jon and I keep seeing him out of the corner of our eyes... hearing him.  Strange.

Jan

Blog comments

katman

24 Nov 2019 10:18 am

 

Not at all strange.  They stay in our hearts forever.  Maybe you could consider going to the shelter/pound and rescuing another poor soul.        

Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Jan Figtree2019

3 Dec 2019 12:19 pm

your comments.   Thanks.

I think we will eventually get another dog or two.... I'm thinking about an older female (maybe a bonded pair)... I don't think I can do puppies anymore.

Jan

 

56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.

Jan Figtree2019

29 Nov 2019 05:01 pm

Hi Lizzie!  Hi Neena!  Hi Sarah!  

We are all lazing about after an enormous Thanksgiving feast yesterday.... luckily my sister-in-law did all the cooking.  All I had to do was eat.

I've had some trouble with my eyes in the last year or so.  Last fall I had a small retinal tear that was repaired with a laser.  I was left with a floater which is bothersome, but it could have been a lot worse if I hadn't seen the doctor right away.  

I am running down some leads about things that cause dry eyes... I think this might have contributed to the tear.   

Which leads me to a pressing question:

I have to have a bit of lab/bloodwork done, and need to know if NAC would cause any interference in the results.  Is it OK to stop NAC temporarily before going for lab work?   

Cheers,  

Jan

 

PS... We got some great rain here in the desert.... it filled my water tank!

56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.

neenavyas

1 Dec 2019 08:37 am

Hi Jan

what a feast it must have been . There was a time when Sonal had a kind of double vision but I think that went away even before the protocol started in April. I will ask her and get back to you, but recently she has not been complaining about her eyes. I have dry eves and regularly use eye drops to keep them lubricated.

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

ElizabethAnne

3 Dec 2019 04:48 am

Hi everyone,

Ten, nearly eleven months in to the programme now. What an incredible, wonderful thing.

I remembered this morning something I'd had for ages. You know those very soft pouches immediately under your eyes? Well, my right one used to randomly start fluttering on and off for days at a time. Months with nothing, then on it would come. It felt like it was twitching really fast. Not painful, but not good and evidence that something was wrong.  Anyway, I'd completely forgotten this used to happen, because it's been so long.

Thanks, D-W and Sarah.

Best wishes, 
Lizzie

Elizabeth Anne

neenavyas

4 Dec 2019 02:35 am

Lizzie

absolutely wonderful! keep at it. Hopefully all your symptoms and nagging stuff will disappear!

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

ChristopherJ

3 Dec 2019 10:45 am

Hello everyone,

I haven't posted for awhile but I wanted to say that I still read everybody's comments every morning! Four months on the protocol and haven't experienced any improvements yet but reading about yours Lizzie and others keeps me determined. I started a new  pulse yesterday and know I have quite awhile to go in this fight so reading all of your updates and comments is obviously very helpful.

Keep'em coming!

Christopher

 

I am a retired guitar repair/restorer after 35 years. I live in Colorado and am wanting to now restore my health!

neenavyas

4 Dec 2019 02:33 am

Hi ChristopherJ

so good to hear from you. I nearly posted a hello to you two days ago but then I thought maybe you dont want an intrusion into your privacy and dont want to post anything. So good to see you are carrying on with the protocol. I know how impatient I am getting about Sonal's lack of serious improvements, but she certainly has more energy and can do much more around the house, even if just supervising. And there are very tiny things that are better, like better strength in the right hand. She has finished eight pulses I think -- beginning to lose count.

Keep at it. Lizzie's story is so wonderful and so inspiring for everyone else.

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

ElizabethAnne

5 Dec 2019 05:15 am

Hi Neena and Christopher and everyone else,

Yes, my improvements have been tremendous. I had some immediate ones in the first week of taking Doxy (sleep better, memory and concentration returning), but it was 3 months before I took my first Pulse. My husband and I were walking in a park 6 months ago (5 months in; 2 pulses completed) and that was when we first noticed my walking had improved. Everything is gradual, and then bang! you notice you can do things you couldn't before. Emotionally it's been fabulous.

I know I have a long way to go. Walking is about 6/10; right hand strength about the same. I will be patient and relaxed.

BTW: I feel a bit of a rebel when asked by a doctor if I'm on any medication -- I say 'no'. 

Bye for now,
Lizzie

Elizabeth Anne

Sarah

5 Dec 2019 06:57 am

I'm a rebel too Lizzie! Nobody is able to believe that I am medication free and I am currently being pestered by the Community Psychiatric Nurse who must think that I am in denial of my illness. Really, she is wasting my time and should concentrate on someone really in need of help: one of those people on the BBC today. I shall tell her in ten minutes when she has finished with her current patient! 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah

5 Dec 2019 02:53 pm

And so I did: I neither want nor need to see either a psychiatrist, psychiatric nurse or an occupational health person and I won't. If people can't be persuaded that I have been cured from an 'incurable disease' then let them think as they want, but please leave me alone. My husband found Chuck Stratton in the nick of time: I had probably had the disease for about twenty five years when I was diagnosed with SPMS and by that time I was tumbling down the mountain very fast.

I suppose I ought really to put this in my blog in a little while!

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

neenavyas

7 Dec 2019 01:34 am

Hi all

So good to hear about Lizzie's improvements. Once one can manage d aily functyions and go back to work, like she has done, other stuff can take its time. Sarah why dont you let the nurse come and see how well you are. Maybe then she will believe when she sees it herself, or maybe not, because neuros have persistently refused to see what is before them.

By the way Sarah, would yopu or David have any answers to when someone on the protocol who is in a bad way like Sonal should be seeing improvements. She certainly has more energy and has been coping with stuff which she herself says she wouldnt have been able to six months ago. But nothing else much. She has spasticity and her back hurts from not being able to get up from bad without putting all the pressure on the back.

And Kiki havent heard from you. How are you? Is your fatigue situation better? Because that is what has improved first for Sonal. Take care and keep well keep you spirits high

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Sarah

7 Dec 2019 06:42 am

Neena, I will not go to see a psychiatric nurse: She is concerned about my mental health, nothing else and that is fine. We have both seperately told her to look at us on Catalyst and yesterday I told her that she should get on with seeing all the people who really need her help: someone might commit suicide whilst wauting to see her.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah

7 Dec 2019 08:19 am

Neena, the first stage of getting better is not getting any worse, but actually, there are members who haven't even been able to start pulsing by this time in Sonal's treatment.

Both Sonal and.Kiki have the double load of young children pulling them in various directions too. I am childfree which is maybe a good thing in this case.

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

neenavyas

9 Dec 2019 02:58 am

Dear dear Sarah

of course you are right. I keep telling Sonal to let the children deal with their own issues but she keeps very involved. With severe limitations to her mobility, she keeps herself busy dealing with the children's homework, projects their outings day spends with friends and so on. And she keeps a good house of course with some domestic help. But this is her way of also dealing with the huge blow life has dealt to her.

She does say repeatedly she feels her head is a lot clearer than it was six months ago. But severe spasticity in her legs keeps her from easily using even the walker. And with so many hours in bed  for nearly two years now her back gives her a lot of trouble.

I hope the New Year brings her some  little improvement in mobility. By the way you mentioned somewhere that you also took Rifampicin perhaps six months into the protocol. Did that make a huge difference? Sorry to keep on about this. Somehow its got fixed into my head that Rifampicin may do good to Sonal like to Katman and you.

Cheers. Any news from Kiki?

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Sarah

10 Dec 2019 12:58 pm

Neena, Katman was taking rifampicin from the start, but I took it after about six months because those were the early days and David thought it might be better not to take doxycycline for too long. I did not like it at all: I could walk better when on doxycycline and was very glad to get back on it. My tendency to veer to the left when on rifampicin was OK when walking up the road, because the worst thing I could do was to end up in someone's hedge, but going down the road, I had to be careful not to end up in the road.

I was lucky in that most of my big improvements happened in my first six months, so I really can't say what help rifampicin gave me.  I think honestly that I would be just as well now had I never taken the stuff.

I would advise Sonal to steer clear of it until her spasticity gets rather better: just think, a hundred years ago, there would have been no hope for any of us..

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Jan Figtree2019

3 Dec 2019 12:09 pm

Hey Lizzie!

I have a twitching eyelid... I'm hopeful that will dissipate like yours.  I just had an episode this past week.   Like your twitching, it isn't painful, but highly annoying and symptomatic of something else.

Cheers,

Jan

 

56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.

neenavyas

15 Dec 2019 12:38 am

Dear Sarah

thanks for further clarification on Rifampicin. Sonal started her seventh pulse two days ago and she copes fine with it, except for fatigue third day onwards and nausea, mostly mild and bearable.

Let us see what the New Year will bring. Of course, it is very obvious that compared to the previous eight months before she started the protocol in April this year, she had gone downhill rapidly. That decline has definitely halted. As far as mobility is concerned she is where she was in April. But othwise generally feeling better (and she looks better).

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.