Please help me save my wife!!!

[hutch]

I humbly ask for your assistance. My wife has a disease that threatens her very existence. It is very closely related to MS. Torsten is aware of the condition. (I emailed you back in April of 2008, I was the annoying shit that was so desperate for you to open my account) I stumbled across this website at a very low point in my life. Apart from the odd on the odd occasion I was pretty well ignorant to things of the like. Hindsight tells me now that I had a very good opportunity to have a man that I must now admit to having a great respect for offer me assistance and I got scared off. Well I have trolled this and many other sites along related lines and I am now a convert. The experts tell me to make her comfortable. Well to hell with them. I don’t want to loose my wife and I have now begun to find a new spirituality that I have never felt before Thank you the “CORROBOREE“. You have saved my life, now help me if you can to save my wife’s.

Torsten, my apologies for my ignorance, sometimes we learn slowly and when you have a wife that you care for so much you tend to want to take things slowly. I have learnt so much since April of last year. Thank GOD O’barma has lifted the ban on Embryonic Stem Cell Research. How many people lives will be changed for the better. What exciting times. I want to become a shaman and save my wife. If you think you can help, contact me or, (and I hope you don’t mind Torsten) Torsten. I trust that you will give out personal details to those whom you think may help only.

Cheers all...

Hutch

[Gunter]

Can you provide the name of the disorder?

Symptoms?

My wife's family has a history of Huntingtons chorea.

[hutch]

Can you provide the name of the disorder?

Symptoms?

My wife's family has a history of Huntingtons chorea.

Spinocerebellar Ataxia type 1

cheers

Hutch

[Chiral]

Sorry to hear about your wifes disorder...I hope you find what you need to help with it, and I'm sure I speak for others and wish you both good health and happiness.

H.

[planthelper]

reading your opening post, hutch, made me very emotional, and i'm sure the people here will support you and come up with suggesstions.

i don't know how to say this but, if i were torsten, i would feel a bit, taken out of my comfort zone...

in other words it would not be easy, to know people have hopes in you, which basicly regarding to the text books don't excist yet.

my only idea was ayahuasca, but i can't find much on the net linking your wifes diagnose with this term.

there is already one very positive aspect in your post, and that is that you found recently a deep spiritualety within you and that you have the sence that, "you can beat this" and those two are the most important tools for saving your wife's life.

my thoughs and my love will be with you.

More Medical News... Lithium Improves Function in Mice with Form of Ataxia

HOUSTON -- (May 29, 2007) -- Feeding lithium to mice that have a neurodegenerative disease called spinocerebellar ataxia type 1 (SCA1) improved their coordination, learning and memory, even after early symptoms of the disease had appeared, said Baylor College of Medicine researchers in a report that appears online today in the journal Public Library of Science Medicine. "This did not cure them," said Dr. Huda Y. Zoghbi, professor of molecular and human genetics, pediatrics and neurology at BCM, a Howard Hughes Medical Institute investigator and the senior author on this paper. "It improves the symptoms, but we do not know how it will affect the disease long-term." She warns that the drug needs further testing before it can be considered for treatment in people with spinocerebellar ataxia 1. "It needs to be tested first in a few patients to see if they tolerate it," she said. Lithium is best known as a treatment for people with bipolar disorders, which involves wide swings in mood. If it is safe, larger studies can be undertaken.

Edited March 8, 2009 by planthelper

[Torsten]

This could be well out of my comfort zone. I never wanted to treat people, but rather I find fulfillment in providing tools for people to find their own solutions, or at least options. It's not that I shy away from the responsibility... it's just not my thing as I find it holds me back in my own development.

That said, I actually don't think hutch assumes I have a solution and as such his request is not causing me any conflict. I would like to help, but even if I can't there are many great minds on this forum and together we might be able to help. This condition is definitely far removed from anything I specialise in so I hope everyone can get their little research hats on and come up with some options that can be explored.

Hutch, ultimately you and your wife will have to learn about all options that might be made available to you and you will have to make your own decisions. I hope that the good people on this forum can dig up some cutting edge research that your docs might not be aware of yet or are simply not prepared to try here. Essentially all we can do is to lighten your research load so that you have more time to support your wife.

Hutch, can you give more detail as to what your research is up to? Just so we don't cover old ground.

This looks promising:

Gene Therapy Cures Mice with Spinocerebella Ataxia

JAPAN -- (March 13, 2008) Hirokazu Hirai and co-workers at the Gunma University Graduate School of Medicine in Japan recently had a major breakthrough. Mice with neurodegenerative diseases have been successfully treated with gene therapy, according to research published online in EMBO reports this week. Using lentivirus vectors, scientists were able to administer a therapeutic enzyme to treat Spinocerebellar Ataxia, a neurodegenerative disease that currently has no cure.

Mutations in the DNA sequence of several genes cause the proteins they encode to contain abnormally large amounts of the amino acid glutamine. Over time, the build up of polyglutamine aggregates leads to neurological degeneration and the onset of disease symptoms. The Japanese Doctors artificially overexpressed CRAG - the enzyme that naturally assists in breaking down the polyglutamine aggregates - in the affected mice, which where then able to clear the aggregates. Subsequently, neurons were rescued from degeneration and the disease symptoms markedly alleviated.

The team hopes that their work in mice can be developed into a clinical treatment for the nine types of polyglutamine disease, including Spinocerebellar Ataxia and Huntington’s disease, that result from these kinds of genetic errors.

Looks like we need to find some herbs that activate or increase CRAG production as CRAG seems to be the key to the removal of poluglutamine build up.

[faustus]

or find an inducer of NMNAT:

NAD synthase NMNAT acts as a chaperone to protect against neurodegeneration

NAD synthase NMNAT acts as a chaperone to protect against neurodegeneration</h2>Neurodegeneration can be triggered by genetic or environmental factors. Although the precise cause is often unknown, many neurodegenerative diseases share common features such as protein aggregation and age dependence. Recent studies in Drosophila have uncovered protective effects of NAD synthase nicotinamide mononucleotide adenylyltransferase (NMNAT) against activity-induced neurodegeneration and injury-induced axonal degeneration^{1, 2}. Here we show that NMNAT overexpression can also protect against spinocerebellar ataxia 1 (SCA1)-induced neurodegeneration, suggesting a general neuroprotective function of NMNAT. It protects against neurodegeneration partly through a proteasome-mediated pathway in a manner similar to heat-shock protein 70 (Hsp70). NMNAT displays chaperone function both in biochemical assays and cultured cells, and it shares significant structural similarity with known chaperones. Furthermore, it is upregulated in the brain upon overexpression of poly-glutamine expanded protein and recruited with the chaperone Hsp70 into protein aggregates. Our results implicate NMNAT as a stress-response protein that acts as a chaperone for neuronal maintenance and protection. Our studies provide an entry point for understanding how normal neurons maintain activity, and offer clues for the common mechanisms underlying different neurodegenerative conditions.

Edited March 8, 2009 by faustus

[faustus]

i have to get going but if there's any overlap in pathology of ataxia 1 and 6 then this might be a worthwhile read.

Successful treatment of spinocerebellar ataxia 6 with medicinal herbs

A case of familial spinocerebellar ataxia 6 with typical symptoms is presented. A 60-year-old Japanese female suffered from gait disturbance, ataxia and dizziness. Head magnetic resonance imaging revealed a typical atrophic image in cerebellum. Genetic tests revealed an expanded allele of 22 CAG repeats at the spinocerebellar ataxia type 6 locus. She was diagnosed with spinocerebellar ataxia 6. Her mother was also diagnosed with the same disease. A mixture of 18 medicinal herbs (modified Zhengan Xifeng Tang) was given according to the differential diagnosis based on the guidelines of traditional Chinese medicine. All of the symptoms were remarkably improved after 60 days of the herbal treatment. One year after discontinuation of the treatment, she complained of gait ataxia. She was treated with the modified Zhengan Xifeng Tang for 60 days. Gait ataxia was markedly improved by the second treatment. Fifteen months after discontinuation of the second treatment, she complained of gait ataxia again. The same remedy was given for 60 days. Gait ataxia was remarkably reduced again. The results may imply therapeutic potential of the medicinal herbs for spinocerebellar ataxia 6.

fulltext.pdf

fulltext.pdf

fulltext.pdf

Edited March 8, 2009 by faustus

[hutch]

i have to get going but if there's any overlap in pathology of ataxia 1 and 6 then this might be a worthwhile read.

Successful treatment of spinocerebellar ataxia 6 with medicinal herbs

A case of familial spinocerebellar ataxia 6 with typical symptoms is presented. A 60-year-old Japanese female suffered from gait disturbance, ataxia and dizziness. Head magnetic resonance imaging revealed a typical atrophic image in cerebellum. Genetic tests revealed an expanded allele of 22 CAG repeats at the spinocerebellar ataxia type 6 locus. She was diagnosed with spinocerebellar ataxia 6. Her mother was also diagnosed with the same disease. A mixture of 18 medicinal herbs (modified Zhengan Xifeng Tang) was given according to the differential diagnosis based on the guidelines of traditional Chinese medicine. All of the symptoms were remarkably improved after 60 days of the herbal treatment. One year after discontinuation of the treatment, she complained of gait ataxia. She was treated with the modified Zhengan Xifeng Tang for 60 days. Gait ataxia was markedly improved by the second treatment. Fifteen months after discontinuation of the second treatment, she complained of gait ataxia again. The same remedy was given for 60 days. Gait ataxia was remarkably reduced again. The results may imply therapeutic potential of the medicinal herbs for spinocerebellar ataxia 6.

fulltext.pdf

Thankyou all. Our doctor has never raised any these. You are all very amazing people.

This is just so humbling

Cheers

Hutch

[hutch]

This could be well out of my comfort zone. I never wanted to treat people, but rather I find fulfillment in providing tools for people to find their own solutions, or at least options. It's not that I shy away from the responsibility... it's just not my thing as I find it holds me back in my own development.

That said, I actually don't think hutch assumes I have a solution and as such his request is not causing me any conflict. I would like to help, but even if I can't there are many great minds on this forum and together we might be able to help. This condition is definitely far removed from anything I specialise in so I hope everyone can get their little research hats on and come up with some options that can be explored.

Thanks Torsten, I do hope I haven't put you in a difficult position as that was never my intention. You are correct in assuming that I dont expect you or anyone else for that matter will have a cure but isn't science a funny thing! A cure could be just around the corner for many things. All it needed was a little push and a collaberation between very clever people. I am blown away so often by the smarts of some of the people on this and other like minded sites. I may not have been a huge contributor to this site but I have read so much of it at every spare opportunity. The end result! I am nothing like the person I was 12 months ago. I think nothing like the person I was 12 months ago and I like it. Always been searching for something and thank God or what ever universal power there is out there that I found it. Sounds a little like a lost soul saved doesn't it but hey, that might be just what it has been. Ethnobotany! wow. Sharmonism! wow. I feel just like the brain washing is slowly wearing off and I am seeing the light. I am in the early stage's of a very important journy that I know I just have to take. I have no real idea where it is going but I am just so excited to have made a start. My ability to deal with my wifes illness has tripled and I am now ready to take this thing head on. May not be a cure for awhile yet but both our quality of life has allready Improved. I have just started my first foray into Hydroponic tomatoes with a trial plot of 68 plants of 3 different vintage variaties. Never would I even have considered this just 12 months ago.

Hutch, ultimately you and your wife will have to learn about all options that might be made available to you and you will have to make your own decisions. I hope that the good people on this forum can dig up some cutting edge research that your docs might not be aware of yet or are simply not prepared to try here. Essentially all we can do is to lighten your research load so that you have more time to support your wife.Hutch, can you give more detail as to what your research is up to? Just so we don't cover old ground.

Well, we had read a little about lithium and we have decide that this is a trial we are prepared to under take. We have enough documentation together that we are taking to our doctor on Monday of next week. I insist that at all times, no matter what the treatment we decide to undertake that our doctors is aware of it and is monatoring the situation. Even if the treatment is illegal. Her safety is paramount but we know that at times things can be risky but so is doing nothing.

I will keep evryone that is interested up to date with progress of all treatments including dosages, side efects both positive and negative and out comes. This I would rather do as a PM if thats ok.

Once again, Thank You all... Sometimes it is easier to share the road with others than to make the trip yourself.

Peace to you all..

Wayne and Debbie. (Hutch)

[_e_]

sacro cranial might help... as a weekly thing? really helped me when i had encephyllitis.

just an idea.

[hutch]

i have to get going but if there's any overlap in pathology of ataxia 1 and 6 then this might be a worthwhile read.

Successful treatment of spinocerebellar ataxia 6 with medicinal herbs

A case of familial spinocerebellar ataxia 6 with typical symptoms is presented. A 60-year-old Japanese female suffered from gait disturbance, ataxia and dizziness. Head magnetic resonance imaging revealed a typical atrophic image in cerebellum. Genetic tests revealed an expanded allele of 22 CAG repeats at the spinocerebellar ataxia type 6 locus. She was diagnosed with spinocerebellar ataxia 6. Her mother was also diagnosed with the same disease. A mixture of 18 medicinal herbs (modified Zhengan Xifeng Tang) was given according to the differential diagnosis based on the guidelines of traditional Chinese medicine. All of the symptoms were remarkably improved after 60 days of the herbal treatment. One year after discontinuation of the treatment, she complained of gait ataxia. She was treated with the modified Zhengan Xifeng Tang for 60 days. Gait ataxia was markedly improved by the second treatment. Fifteen months after discontinuation of the second treatment, she complained of gait ataxia again. The same remedy was given for 60 days. Gait ataxia was remarkably reduced again. The results may imply therapeutic potential of the medicinal herbs for spinocerebellar ataxia 6.

fulltext.pdf

Thanks Faustus, some real interesting stuff. very complex for lay people like me but the more I read the smarter I'm getting so every bit helps. i have a lot of faith that a cure will come from a fungi, Herb or emronic stem cell. We are on the cusp of some very interesting times. The internet has sped us into the new centery at an amazing pace and I am so excited. So many things I knew nothing about..

Hutch

[Zen Peddler]

'Our doctor has never raised any these. You are all very amazing people

My advice is to take your wife's health and medical situation into your OWN hands. The doctors use arrogance and hubris to hide the fact that usually they have fairly sketchy understandings of rarer medical conditions and they are nearly never abreast with current developments in a given area.

As an example I have a condition that is relatively rare (effects 1 in 200 people or so) -and the specialist I go to is a leader in his field - yet was totally unaware that another leader in the field had made 7 different discoveries about the condition that will result in significant improvements in treatments. And he is a leader in the field - imagine what the average uppety dead shit knows... Other than what Glaxo cline tells him...

[Torsten]

what zen said! It si really important to take charge yourself. Don't be shy in demanding a full explanation from your doc about anything. And that includes cutting edge therapies too. Sometimes you have to travel to get to the right doc. The best ones are those who are somehow attached to a research outfit. That means they already have an interest in the cutting edge developments of that condition, so they will be more likely to help with explaining why such treatments may or may not be suitable for your wife. Do your homework though - you must try to communicate with the docs on a level where they feel you understand what the optins are and what's going on.

Do your research online to see who is involved in such research in australia and who is playing on the cutting edge. Then see where they work. If they are in a treatment facility then book yourself in there. If they are just researchers working in a lab then get in touch with them and ask if they work with a particular facility or doctor.

That's how I found my current specialist. I was searching online for a lab that does a particular sampling and analysis process and ended up with a couple of scientist names, then with a resarch facility and then with an associated treatment facility. Now I am being treated by the leaders in this field in australia. Not in some fancy large hospital, but a little private clinic 800 kms away. It's the first time in my long journey with my condition that I feel the people working on this actually know what they are doing. And essentially that's what you need to find for your wife. A doctor or team of docs where whatever you ask them they either already know it or they aren't shy to look it up.

The difference can be astounding. While previous specialists are using methods that are several decades old and meanwhile disproven, when you get to the right doc you wonder why the other ones are even allowed to treat people. Even my GP was himself treated by a specialist with the ineffective and even dangerous old treatments, so you can see that in this culture of unquestioned authority and total lack of oversight the only person that can make a responsible decision is YOU.