In Pursuit of ABX - May I have coffee with my milkshake?

A forum for the discussion of antibiotics as a potential therapy for MS

Re: antibiotics protocol

Postby Theresaa » Sun May 26, 2013 5:57 am

Hi Sarah

I live in the republic of Ireland have had ms for 13 years on copaxone after finishing betaferon due to side effects.. I am interested in trying the antibiotic protocol with a chance to free myself from this horrible disease. When I approached my local GP she thought I was a lunatic! I explained I had done my research and I gave her my papers printed from David Weldons website. Please can you advise me i9f I could come to David to get a prescription for the antibiotics as I am fearful about buying on the internet and getting wrong antibiotics.? :?: Please help I feel like no one is listening!


Anecdote wrote:Hi Ken, thank you for noticing the humour in my chosen name. David saw my choosing such a name was a sure sign that I was recovering!

Don't forget to let me have your email so that I can send you those papers. As you say, David is clearly a real doctor but the real doctor who actually started this off is Charles Stratton a microbiologist at Vanderbilt, who now works in conjunction with one of their neurologists, Ram Sriram.

I think far and away your best choice would be to take the papers along with David's treatment pdf to either your general practitioner or your family friend who is a doctor. If this person then wants to contact Stratton, he works this way with many similar doctors on your side of the Atlantic. When I first started it was very difficult to get a GP to be adventurous and treat MS in any other way than that prescribed by a neurologist. Over the last few years, though, things are changing and there is a growing consensus of opinion that these are relatively harmless and certainly cheap drugs, so why not give them to people for whom there is nothing else available? David hears from patients all the time that their GP has agreed to prescribe.

The difference between the protocols? David can use roxithromycin which isn't available in the US. Other than that he prefers the gentle approach, but that is something also preferred now by Stratton in most cases. Another difference is probably the fact that David primarily treats hospital patients and sees them on a daily basis. Stratton, on the other hand is primarily a researcher and teacher. They are, though, the best of friends and share the same sense of humour.

When I started I didn't think it would work. I had only taken antibiotics twice before and kept hearing from friends that what they had been given did absolutely nothing for them. David came home with a pack of doxycycline. "Right, take two now!" "Well, shouldn't I wait until the morning so I don't have to take them both together?" "No, take the both, NOW!" It didn't take long to convince me.

Sarah :)
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby SarahLonglands » Sun May 26, 2013 8:29 am

Theresa, I'm sending you a PM, so watch out for it!

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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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby MacKintosh » Sun May 26, 2013 1:29 pm

Hi, Ken - I don't know how I missed your recent update. Ditto to Sarah's comment; good to hear from you again. I'm going to go back and read through all of it again, but (just skimming) I did notice your comment about the three-year limit on abx. I ended up taking abx over six years, full-time. No way did I feel ready to stop it at three years. (I really didn't care if I had to take the stuff for the rest of my life, as long as it staved off any further decline.)

Sending good thoughts to both of you. I hope you find your answers soon. And kudos to Kim; I can't handle a Segway, no matter how hard I try! We had several at work and everybody played with them; I can run and I can jump and I can drive a standard-shift car, but I can't pilot a Segway. ;-)
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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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby SarahLonglands » Mon May 27, 2013 7:00 am

Ah, I looked up Segways again when I read that Kim had one, but now I think I will wait. They still aren't allowed here on the public highway in ay case!

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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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby guddi » Tue May 28, 2013 8:59 am

Hi All, I'm a new member & have had ms for 33 years. I am interested in trying the antibiotic protocol with a chance to free myself from this horrible disease. When I approached my local GP he thought yet again I have been on the compuuter! I explained I had done my research and I gave him my papers printed from David Weldons website. Please can you advise me if I could come to David to get a prescription for the antibiotics as I am fearful about buying on the internet and getting wrong antibiotics.? Please help I feel like no one is listening
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby guddi » Wed May 29, 2013 12:21 am

** My above thread in for Sarah.
Thanks
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby notasperfectasyou » Sat Oct 17, 2015 9:09 pm

A self reflection ....

I have come to realize that my hiatus is not so much about stress at work, it's about a lack of excitement about improvement. I figured this out about myself, not through endless hours of self examination, but by observing my own feelings and emotions as I watched KIM WALK UP THE STAIRS TONIGHT, ALTERNATING HER STEPS, JUST AS NON-DISABLED PEOPLE DO ..... and I realized that I couldn't wait to come here and type.

Kim has been on 300mg Biotin daily for 2-weeks. Bladder control is improved. But, tonight, Kim walked up a flight of stairs, much like I do. I was shocked. "Kim, when were you going to tell me about this?". Let me back up a bit. For about the last year, it's been getting a lot harder for Kim to climb the stairs at night. She has needed help at times and one night a month or so ago, she complained on the stairway that maybe we need to move the bed to the main level of the house. That was my motivation to get myself back here to find something that might help. I spent weeks reading new material and Sarah was so very thoughtful to have messaged me about Biotin. Thank You Sarah!

So, this was big for us. Now, you have to understand, and I know we all do, that this is very early, very anecdotal, very much a one time occurrence, very not at all scientific. But, I am motivated to come here and share. I should tally up all of Kim's supplements and update the list here. I think we see Sriram in about a month. Oh, and today is my birthday. best birthday EVER! Ken

Related Post on Biotin Board: http://www.thisisms.com/forum/post237137.html#p237137
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby NHE » Sat Oct 17, 2015 10:41 pm

notasperfectasyou wrote:I have come to realize that my hiatus is not so much about stress at work, it's about a lack of excitement about improvement. I figured this out about myself, not through endless hours of self examination, but by observing my own feelings and emotions as I watched KIM WALK UP THE STAIRS TONIGHT, ALTERNATING HER STEPS, JUST AS NON-DISABLED PEOPLE DO ..... and I realized that I couldn't wait to come here and type.

Kim has been on 300mg Biotin daily for 2-weeks. Bladder control is improved. But, tonight, Kim walked up a flight of stairs, much like I do. I was shocked. "Kim, when were you going to tell me about this?". Let me back up a bit. For about the last year, it's been getting a lot harder for Kim to climb the stairs at night. She has needed help at times and one night a month or so ago, she complained on the stairway that maybe we need to move the bed to the main level of the house. That was my motivation to get myself back here to find something that might help. I spent weeks reading new material and Sarah was so very thoughtful to have messaged me about Biotin. Thank You Sarah!

So, this was big for us. Now, you have to understand, and I know we all do, that this is very early, very anecdotal, very much a one time occurrence, very not at all scientific. But, I am motivated to come here and share. I should tally up all of Kim's supplements and update the list here. I think we see Sriram in about a month. Oh, and today is my birthday. best birthday EVER! Ken

It's great to hear about Kim's improvements. I hope that they continue!
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby SarahLonglands » Sun Oct 25, 2015 7:13 am

Ken, what good news! And a very happy birthday to Kim for the eighteenth! Sarah :smile:
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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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby Loriyas » Sun Oct 25, 2015 4:52 pm

Ken I am SO glad to see you back here! I have often wondered about Kim. I am glad to hear her good news. I wish you both the best with her appointment with Dr Sriram. I just saw him last week. Love that man!

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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby Toffy » Fri Dec 04, 2015 7:04 pm

NHE wrote:
notasperfectasyou wrote:I have come to realize that my hiatus is not so much about stress at work, it's about a lack of excitement about improvement. I figured this out about myself, not through endless hours of self examination, but by observing my own feelings and emotions as I watched KIM WALK UP THE STAIRS TONIGHT, ALTERNATING HER STEPS, JUST AS NON-DISABLED PEOPLE DO ..... and I realized that I couldn't wait to come here and type.

Kim has been on 300mg Biotin daily for 2-weeks. Bladder control is improved. But, tonight, Kim walked up a flight of stairs, much like I do. I was shocked. "Kim, when were you going to tell me about this?". Let me back up a bit. For about the last year, it's been getting a lot harder for Kim to climb the stairs at night. She has needed help at times and one night a month or so ago, she complained on the stairway that maybe we need to move the bed to the main level of the house. That was my motivation to get myself back here to find something that might help. I spent weeks reading new material and Sarah was so very thoughtful to have messaged me about Biotin. Thank You Sarah!

So, this was big for us. Now, you have to understand, and I know we all do, that this is very early, very anecdotal, very much a one time occurrence, very not at all scientific. But, I am motivated to come here and share. I should tally up all of Kim's supplements and update the list here. I think we see Sriram in about a month. Oh, and today is my birthday. best birthday EVER! Ken

It's great to hear about Kim's improvements. I hope that they continue!


Hi Ken,
It is now over a month since you posted Kim's improvements with biotin. Have the improvements continued-has Kim experienced any side effects?
I hope you are having some good results.
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby notasperfectasyou » Thu Dec 01, 2016 9:01 pm

It's been a year!?!?!?!?

Kim has worsened. We just got back from Vanderbilt. There isn't much that can be done without putting Kim at risk. I should back up, it's hard to know what to say when you've been away so long. Scripts:

Gilenya .5 every other day, Kim's white count has been low for over a year now
Roxi 450 daily, this is the remaining remnant from ABX. She has been on/off Mycobutin the last couple years. But, it's really hard to see that it was helping.
Provigil 200 daily
Biotin 300 mg daily
Baclofen 3x 20mg daily
Gabapentin 2x 300mg daily
Desmopressin .3 mg each night
LDN 4.5 mg at night

I'm sure I'm missing something, will add to this later. This summer Kim's leg started to swell and get red occasionally. Got real bad in late July and we went to the hospital. After a lot of negative tests, they said she had Edema, then they sent Kim to an Edema clinic and they said she didn't have Edeam, instead they said she had Reflex Sympathetic Dystrophy, then we when to Vanderbilt and Kim was told that she has Erythromelalgia (I think I got that right). Bottom line seems that there isn't much anyone can do about this. Kim is wearing compression socks most days, but this is affecting her mobility. It's been a very hard year for Kim.

She has been falling more often and I have been doing more around the house. I don't mind, but it is frustrating to Kim to be losing her mobility. Oh, I forgot to mention that she was hit by a car last spring in the rec-center parking lot. While Kim did great on ABX for a few years, it's clear that resistance got her and the dang bacteria was able to out maneuver the regimen. I don't want to get into a debate about that, it's history. ABX is very good, but it's not perfect.

So here we are today. Our Vanderbilt doctor has another patient that has done stem cell treatment, with some success. This is the avenue we must pursue. I'm coming here first as the best MS info place on the planet. I need to discern our way through stem cell methods quickly, but thoroughly. We want to get the best change for success. I'm also wondering if anyone here has ever done a GoFundMe page, we need to consider that for this therapy. As I see it, this is potentially a new and ground breaking chapter - so long as I have experiences to share, I think I will share them here. Ken
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby NHE » Thu Dec 01, 2016 11:26 pm

notasperfectasyou wrote:I'm also wondering if anyone here has ever done a GoFundMe page, we need to consider that for this therapy. As I see it, this is potentially a new and ground breaking chapter - so long as I have experiences to share, I think I will share them here. Ken


1eye has a GoFundMe page for an electronics project to help PwMS. You might wish to contact him.

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic28253.html
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby SarahLonglands » Sun Dec 04, 2016 6:54 am

Ken, this is very bad news, but am I right in thinking that Kim was at first on Novantrone but had to come off it because of heart issues?

I will send you a pm but it does rather seem as though the last option is stem cell therapy.

Best wishes 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.
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby notasperfectasyou » Tue Dec 27, 2016 6:09 pm

SarahLonglands wrote:Ken, this is very bad news, but am I right in thinking that Kim was at first on Novantrone but had to come off it because of heart issues?

I will send you a pm but it does rather seem as though the last option is stem cell therapy.

Best wishes to you both, Sarah


Sarah, it has not been good. We are now trying to raise funds and discern our way through stem cell research to get to a decision about therapy. Here is Kim's GoFundMe Page. There appears to be 2 different approaches to Stem Cell Therapy for MS. They are Hematopoietic Stem Cell Transplantation (HSCT) and Mesenchymal Stem Cell therapy (MSC). Here is a good article I have found that discusses both of them:

Holloman,Jameson et al. 2013 The development of hematopoietic and mesenchymal stem cell transplantation as an effective treatment for multiple sclerosis. There is a link on the page that will take you to a full text article.

One of the first things to understand is that HSCT involves heavy chemotherapy and MSC does not. Kim was on Novantrone therapy years ago, just before starting antibiotics. She had to stop after the 5th of 8 treatments because she could not pass the heart valve test. So we need to figure out if that is a pretty clear indicator that she won't be eligible for HSCT.

Just went back and searched this thread for the word "Novantrone". I may be off on recalling the reason for Kim's Novantrone therapy ending abruptly. BTW, love that I could search this thread for the word "novantrone", thanks TIMS! Ok, so looks like the history I have posted is:

03/2001: RRMS, Ataxic wide based gait, uses cane, cannot perform Romberg Test, Avonex, Provigil.
02/2005: Condition changed to SPMS, Requires cane to walk more than a few steps, first report of bladder dysfunction, Avonex, Provigil
10/2005: MRI
04/2006: Spastic wide based gait, ambulation difficulty, letter of medical necessity for motorized scooter, Initiate Copaxone, Provigil, Discontinues Avonex.
09/2006: Novantrone Infusion 1
10/2006: Improved to normal gait some spasticity, Copaxone, Novantrone, Provigil
12/2006: Novantrone Infusion 2
03/2007: Novantrone Infusion 3
04/2007: Increasingly difficult wide based spastic gait, Copaxone, Novantrone, Provigil
05/2007: Worsened wide based spastic gait, Initiate IVIG, Copaxone, Novantrone, Provigil
06/2007: Novantrone Infusion 4
07/2007: Improved wide based spastic gait, Copaxone, Novantrone, Provigil
09/2007: Novantrone Infusion 5, discontinued chemotherapy due to failure of continued effect. First report of sexual dysfunction.
01/2008: 25-foot walk time 20 seconds. Improved sexual function. Initiated Combined Antibiotic Protocol, Copaxone, Provigil
05/2008: 25-foot walk time 8 seconds. Kim uses the cane a lot less. Noted improved bladder function and body heat. Combined ABX Protocol, Copaxone, Provigil
06/2008: 25-foot walk time 6 seconds. Combined ABX Protocol, Provigil, Discontinues Copaxone
10/2008: 25-foot walk time 5 seconds. Initiated Aqua Aerobics class. Combined Antibiotic Protocol, Provigil.
01/2009: MRI. Completed first year of Combined Antibiotic Protocol.

Also, In November of 2007 I said: "Kim went for her 6th Novantrone yesterday and ......... didn't get infused. The Oncologist Hemotologist said he had concern because of Kim's bursting blood the last time around."
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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