at my wit's end

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

at my wit's end

Postby donushka » Sun Mar 08, 2009 10:54 am

Hello. I am a 29 year-old woman living in Israel with secondary progressive MS (diagnosed with MS when I was 20) that has tried every treatment there is possible (as far as I know).

This includes (in chronological order):
Avonex
Betaseron
Copaxone
Rebif
Hemonoglobin
Cytoxan
Tysabri
Novantrone

Currentlyl, I am in a wheelchair, and in a recent visit to my neurologist, he told me that he's not sure what I should try next, because, as he said, there isn't anything else to try.

The visit left me angry, frustrated, and confused, and I am at a loss of what direction to take with regards to my treatment.

I am very interested in reading about any experiences, tips, advice or information any of you may have.
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Welcome, donushka

Postby lyndacarol » Sun Mar 08, 2009 12:11 pm

Welcome, donushka. You have definitely worked your way up to the "big guns."

Let me make two suggestions: 1. Since you obviously have excellent command of the English language, please read the book, Multiple Sclerosis: the History of a Disease by T. Jock Murray, OC, M.D. 2. Please consider the simpler treatments of the past when pharmaceuticals were not available, for example, diet.

Since I believe that the MS cascade begins with excess insulin, I follow a low-carb diet (basically, though not strictly, the Atkins' diet); my aim is to lower blood glucose and, consequently, my insulin level.

The diet is healthy and cannot hurt you; reading is good for the mind; and my own personal thought is "What have we got to lose?"

We have MANY, differing opinions (respectfully allowed) here. I'm sure others will share their ideas with you, too.

My best wishes go to you.
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Re: at my wit's end

Postby AndrewKFletcher » Sun Mar 08, 2009 12:32 pm

Donushka

Read up about my research into Inclined Bed Therapy, put your pills in the cupboard for a few months and tilt your bed to see what happens.

Read also Dr Franz Schelling and Professor Zamboni.

Andrew

donushka wrote:Hello. I am a 29 year-old woman living in Israel with secondary progressive MS (diagnosed with MS when I was 20) that has tried every treatment there is possible (as far as I know).

Currentlyl, I am in a wheelchair, and in a recent visit to my neurologist, he told me that he's not sure what I should try next, because, as he said, there isn't anything else to try.

The visit left me angry, frustrated, and confused, and I am at a loss of what direction to take with regards to my treatment.

I am very interested in reading about any experiences, tips, advice or information any of you may have.
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Postby jimmylegs » Sun Mar 08, 2009 12:36 pm

hi there, sounds very frustrating.
there are a few of us on here using biochemical indicators and trying to normalize these using nutrition. do you have a nutrition regimen already? do you know your status for some of the nutrients that are lower in ms patients? such as b12, 25(OH)d3, uric acid, zinc, selenium?
JL
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Postby cheerleader » Sun Mar 08, 2009 1:10 pm

Donushka...
Shalom to you. I am so sorry for your difficulties, and cannot imagine how hard your struggles have been.

If I lived in Israel, this is where I would go:

Hadassah

The new Multiple Sclerosis Center at Hadassah provides innovative treatments and is operated by neurologists who are world leaders in research, as well as rehabilitation physicians and advisors in the fields of urology, ophthalmology and social work.
A treatment developed at Hadassah, still in the research stage, has been tested on 25 multiple sclerosis and ALS (Lou Gehrig's Disease) patients. Professor Dimitrius Karussis, a senior neurologist at Hadassah and the director of the new Multiple Sclerosis Center, working in collaboration with the University of Athens, and Professor Shimon Slavin, the former director of the Department of Bone Marrow Transplantation (BMT) and the BMT Laboratory at Hadassah, discovered that it is possible to remove stem cells from a patient's bone marrow, to isolate these cells under special conditions and to generate over 50 million cells within two months.


I do not know if autologous mesenchymal stem cells are an option for you...but I wish you well in your search-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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HI

Postby LR1234 » Sun Mar 08, 2009 2:04 pm

Hey Donushka,
I am about to embark on the antibiotic protocol by Wheldon, I know some have found it helpful I also know that some have not had any results from it but I am going to try.

I also eat a low saturated fat diet and am taking supplements i.e Vitamin C, D3, Zinc, NAC, Tumeric, Pycnogenol, L-Tyrsine, Taurine, B12, probitoics, Flaxseed, fish oils and licorice root (an extensive list I know!!)

There are so many people on here trying lots of different things so have a read and see if you fancy trying any of them!

L x
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Postby dignan » Sun Mar 08, 2009 2:17 pm

donushka, there are a few things being tested for progressive MS right now. See here: http://www.thisisms.com/ftopict-5288.html

A few of these substances are currently available for other indications, so you might be able to get them off-label. I'm thinking of lamotrigine, prozac (fluoxetine) and zocor (simvastatin). Cannabinoids are also being tested.

Finally, one of the drugs being tested for SPMS is dirucotide. It will complete a final-stage international trial in July. If it is successful (a big "if") it shouldn't be long before it is available.

I think you came to the right place in any case. There are a lot of people with a lot of good ideas here.
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Postby skydog » Sun Mar 08, 2009 9:48 pm

Hello Donuska I know your frustration. My first diagnosis was PPMS and at the time was told not much could be done. I was lucky in the since that I didn’t have to go through all what you have gone through. We share a path that may seem hopeless, but truly it is not as it seems. Do this for you. Say right now. I am well and the better I feel about where I am in the journey to health the better I will feel. Keep this thought. Repeat this thought over and over every day… Now you have started down a new path with endless possibility. Follow a strict healthy diet fashioned to your liking that includes the beneficial nutrients you need. Read what others here are doing for their health. I know you have come to the right place. This is a big family that truly cares about you. Keep the faith… Peace and Health mark
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Postby DIM » Mon Mar 09, 2009 12:12 am

I second what Cheerleader says as you need the soonest possible some nerve repair, of course other suggestions as diet, antibiotics etc are of great value!
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Postby jimmylegs » Mon Mar 09, 2009 5:28 am

d, dignan is a good advisor on pharma developments. he keeps a pretty darn close eye on all that work that is being done.
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Postby raykp » Mon Mar 09, 2009 2:32 pm

Dear Donushka,
I wish you all the best and hope some of the ideas on this sight really help. I was officially diagnosed 10 years ago but an orthopedist suggested possible MS 20 years ago so I started reading everything I could find at that time. I gave up all dairy incuding eggs at that time. I more recently gave up wheat because of problems that led to steroid treatments which I found very difficult to tolerate. Since stopping wheat and all gluten 4 years ago I have not needed the treatments again. I decided to try Low Dose Naltrexone 3 mg because of problems with stiff, spastic hands. That problem hasn't improved but my walking has improved substantially over the past 8 months. I had gotten to the point of needing a cane but no longer use it except in very hot weather. I did have brief periods when I used the CRABS but got worse. I really believe that my diet has been very important and LDN has definately helped. Stress also causes flareups. Sleep is also very important to resolve problems as well as prevent them (8 hours at least). Sorry this reads like a laundry list but I wanted to present all the things that have helped me and I hope will help you. Shalom.
:D
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Postby Scott1 » Mon Mar 09, 2009 10:15 pm

Hi,

Have at look at my comments about Avonex in conjunction with Valtrex earlier on this section of the forums. I don't for a moment pretend I am cured but I have been able to stay stable by using Avonex (a really horrible injection to be frank) in conjunction with Valtrex (a herpes specific drug called acyclovir). There has been a lot of work showing an association with Epstein Barr Virus. I assume with my approach that the immune system needs to be modulated by the Avonex so that I remylinate faster than I demylinate but it's useless on it's own as there is nothing in that approach to lower the viral load. If EBV is an underlying causitive agent (not proven but there is deep suspicion) then you need to do something to decrease the viral load. If the problem is EBV, every time you make a new cell you are making a new infected cell as all herpes family viruses need a host cell to replicate. Acyclovir lets you make clean cells as it interfers with the replication cycle for EBV. As you are beyond remitting/relapsing then the use of acyclovir may need to be more aggresive than my regime. I don't think acyclovir will work on it's own either as you immune system needs to be modulated by something (eg Avonex). I think primary progressive MS is just remitting relapsing without a break. If that's true (who really knows!) then you may have a very high viral load and an overtaxed immune system. You need to lower the viral load and slow your immune system down to get remylination ahead of demylination.
None of the above will reverse damage that has been caused. I will now say something herectical - try a hyperbaric chamber. This is definitely not a cure but by flooding the body with oxygen you will attack any aneorobic bugs which maybe playing a role and encourage your system to reverse the buildup of scar tissue. It is impossible to objectively measure this but if you are looking for left field ideas it may be worth considering in conjunction with my suggestions on medication.

In summary

Avonex - to modulate the immune system
Valtrex - to lower the viral load
Hyperbraic - to reverse some of the damage to date.

None of these things will work on their own in my experience. It needs to be all together or at least the medications together.

Good luck
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Postby SarahLonglands » Tue Mar 10, 2009 5:44 am

Hello Donushka,

I will send you a private message with detail of the treatment I used, which is the one LR1234 is about to start. I will also tell you of the experiences of someone who lives in Haifa who is using the same treatment.

I suggest you take a look at the Antibiotics forum, where you will see many other people doing the treatment, including Katman, primary progressive who has made amazing progress and Notasperfectasyou, husband and carer of Kimscupoftea, who herself started just over a year ago and is also making very good progress.

I had very aggressive secondary progressive disease which developed after about fifteen years of mild relapsing remitting. My right arm was so bad that it became virtually paralysed but now I am back to work as an artist, doing very large canvases. I have had no relapses or progression of disease since starting back in late 2003.

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 robbie » Tue Mar 10, 2009 7:14 am

hi i don't try anything anymore, the wheelchair is the norm for most,try and enjoy your life as much as you can,we get caught up trying to make it better with many disappointments.it can drain you of what you have left
Had ms for over 19 years now.
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Postby skydog » Tue Mar 10, 2009 10:56 am

Scott I think you have hit the nail on the head with your statement (primary progressive MS is just remitting relapsing without a break) Kinda the way it has been with me. Aside from a few weird issues early on before my diagnosis it has been just a slow slide downhill. I am currently interested in doing the Whaldron Stratton antibiotic protocol and was considering adding acyclovir to the mix. Have not done any of the crab drugs yet. Didn't like the risk of side effects as my overall health is excellent. I have tested positive for the herpes viruses and cpn as well. Had mono at twenty and the chickenpox at forty. Now 51 yrs old with ppms. Glad you are doing so well. Gives hope for the rest of us. Peace and Health Mark
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