Please google ‘ NIV for ALS’

Apparently worthwhile.

My lung capacity is down to 30% – I had to request NIV – currently in hospital getting peg and had bipap overnight. Makes for easier, slightly deeper breathing.

Hi Peggy,

I did a lot of stem cell research last year. I came up with a list of requirements to enable me to select a clinic. 3 most important items on my list that would offer best chance:

1. Must be ISPSC

2. Must be embryonic (Mexico or Israel)

3. Must be lumbar puncture

I am from NZ and my dollar doesn’t go far in the north. Israel too risky.…

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Why did I test for toxins? I have always been fit and healthy and suspected nothing but intuition said somethings in me. Yes, viruses too. My research has led me to a list of tests that should be performed on all pALS:

1. Tick Borne diseases especially Borrelia and other parasites

2. Moulds

3. Pathogens

4. Enderovirus

5. Enterovirus

6. Toxins

7.…

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I grew up in the country and exposed to weed killers and insecticides all my life. Glyphosate is in potatoes and other mass produced vegetables. It is used as a drying agent especially on grain crops. There is plenty of info on YouTube. I live in New Zealand. It has taken 4.5years to find someone to do the testing for root causes. 4 years to…

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I have tested off the scale with Glyphosate. This is known neurotoxin. And yes it is probably a buildup over many years. Combined with bad diet and physical combined emotional stress in recent years before diagnosis BANG left foot drop ALS diagnosis.

@valentina, you can see people who visited Bodyscience on their website and facebook page.

Hi Mel, thankyou for your post.  I would love to know more about your research. PM me if you like.

Here in NZ very few tests are done before be labelled and shovelled into the ‘make comfortable to die’ ditch.  Mine was EMG and a yearly history visit to check progression.

Don’t you think that kinda destroys the thread of original topic?

Amy, would it be possible that you as part of an ALS organisation and on behalf of all pals and other interested parties, be able to ask body science all your great questions?

Hey Danny, thanks for that.  I am trying to find somewhere to do the tests here but being out of the norm it seems to be specialised.  I have an appoint, Monday and hope the tests can be done.

From what I’ve read a leaky gut is a big issue with bacteria etc crossing boundaries. I. Would be happy with that result:-)

Yes it is stressful planning an international trip.  That is why I asked the question.  My rate of progression has sped up and I think I’ve only got a couple years to go.  So it is worth throwing all my savings at this.

thankyou for spelling the out Ann.

Amanda, while I applaud your research and advice given, I do believe you are off track from the original question.  Time and time again on this forum site you and Dagmar caution people. All i did was ask to hear from people whom had anything to do with BodyScience. This is part of my research which I believe would help others. Whilst I agree… Read more

Brian thank you for your info. From what I understand reading available info I agree.  It is currently not a cure, but certainly seems to help halt and even regress from some.

Thankyou for your input.

I have recently been searching or my next healing alternative and came across BodyScience.

Does any tone have any input on this company?

If I decide to go ahead, I will need somewhere to stay for four weeks.

all advice greatly appreciated as travel from NZ is expensive enough.

Keeping hope alive …

Lisa

Yes I had a gene study performed by Auckland University, however hey were only looking at a certain number of genes.  I have small mutations in several but not enough to classify as a singular variant.  I am currently trying to find the best place to have the full gene investigation – any ideas?

Thank you Amanda.  I wish there were doctors let alone clinics that could help pALS in New Zealand!  Access to drugs is made doubly difficult by our drug company laws here.

It is hard to lie.  I usually cry and say not to ask when they know I’ve got MND.   If they don’t know then I say “I’m fine”

Congrats to the 10%. – How can we sporadic pALS get the research companies to trial their targeted gene drugs on us?  I have an SOD1 mutation, along with others but not enough to allow me access to Tofersen.  It is a crime.

As my journeys are at lease 4 hour trips (rare now), I quickly found out that disability toilets are:

1. Not always solely wheelchair accessible

2. Are not the nicest place to visit even when in need

3. When the legs are useless and the arms aren’t strong a carer is need to get me back off the toilet to my chair.

I am planning a short term… Read more

Hi Kim,  I am slow progressing.  However speed has increased dramatically in last 3 months.  I attribute this to slackening of my strict diet.   Do not eat dairy, eggs, milk, wheat, gluten, cheese.   90% greens – preferably fresh and organic – avoid mass produced foods.  Add Leap2bfit amino complex and vitamins and minerals.

See a… Read more

Hi Bill, can you advise where to purchase Clenbuterol? Thank you.

Are there any updates on this?

I am sporadic and find it extremely frustrating that most trials are for less than 10% of ALS sufferers.  My gene test shows some deformity in the SOD1 gene among others, however, I am refused the Tofersen EAP.  I was wondering if I could throw the ‘Right to Try’ spinner in the works?

I feel and live your frustration.  I monitor my own decline and have been pretty good at diagnosing timelines – from walking sticks to power chair.  I speak drunkardly when tired.  I choke occasionally.   My hands are disappearing.  I feel I have a couple more years, hoping for 10 more as the research/trials are just gaining momentum for new… Read more

Hi, Thankyou Louis.   I will start taking L-serine more seriously now!

I too was interested in Clenbuterol, however was unable to find a doctor to prescribe so I could import.  My partner and I tried everywhere, vets, body builders and put the word out everywhere we could, unsuccessfully.   Which led me to find that the sports people aren’t doing ‘Clen’ rather they are using peptides. Mostly GHRP-6. – growth… Read more

Me too!  Dagmar – can we have a separate thread for Treg therapy please?

Hi, I started with left foot drop. Walking with cane 6 months ago now in chair unable to walk. I have stenosis in the usual places and also am a “its the stenosis” person. Now my arms have atrophy, carpel etc you all know. My best pain management has been CBD oil with low THC content. I use stronger CBD gummies if sleep is required. I take… Read more

Hi everyone,  I stumbled across a new ‘ailment medication’ platform on google called ‘Stuffthatworks’

It is a not only a place to share your medications, ask questions and get peer answers, but, the data is analysed by google in a statistical manner which I find makes it easy to see what people are doing that works.

With certain… Read more

Hi,  Before I was diagnosed I had foot drop and the first AFO was a simple L shaped brace – I could walk again – this came at the right time too, just before a quick trip to Australia to meet my new in-laws.  It wasn’t long (6 months or so) before walking once more became awkward and painful on the back. Then came the plastic, custom,… Read more

Creighton, you absolutely nailed our ALS story. Can I please repost on my facebook page?

John, My experience exactly mirrors yours except my progression has slowed 77% according to the ALS scale, by taking RCH4 and appropriate supplements, magnesium for cramps and fasciculations. I too have stenosis – L4/L5 and cervical.  To me the possible 3 months extra with Radicava or rizulole is not worth the side effects.  It is a patch not a… Read more

Sorry for your loss. Please follow this link and have their names printed on flags to be flying in NYC Times Square.

https://iamals.org/action/show-als-can-impact-anyone-at-any-age/

Please everyone impacted by als follow that link for more publicity to help our fight.

Duane, I totally agree with you. I have recently been tested by a naturopath and found multiple  * points to work on – eg: high mercury, low zinc, unhealthy liver….Which is very frustrating as I had my bloods tested fully including toxins through my GP which found everything OK.

I tried ropinirole as a trial was promising, however I stopped it… Read more

Thankyou.

Bill, can you post a link to the site you are referring?

This article is from 2017.  Note the side effects are due to high doses of Clenbuterole.

”The effects that clenbuterol can have on the heart and muscles will depend on how high a dose someone has been taking and for how long. The risks increase with the dose and duration.”

Even Dr Bedlack noted the dosage used in his open label trial and… Read more

I was wanting to know Dr Bedlacks opinion re side effects.  He already knows that the dosage was way too high in the trials and perhaps the lower dose alleviates the negative side effects?

Has anyone asked Dr Bedlack about the side effects of Clen?

Betsy, would you be able to start a new topic when you do have that next appointment and let us know the results?

Hi Dave,  I too watched with interest that video. I would love to try Clenbuterole however in NZ it is illegal other than veterinary use for Horses.  My research also shows that ‘Clen’ is used for doping. I’d love to know where these guys get it from 🙂

 

AFO = Ankle foot orthosis   These take on several forms – plastic, carbon fibre, dictums which is fabric and uses your shoe laces to hold up your drop foot, to name a few.

In my case my leg has weakend up through my hip and I can’t lift my knee high enough to stop my toes hitting the floor when I step, the AFO helps tremendously.

I live in New Zealand and also do not have access to clinical trials.  Although, since researching the internet, I probably wouldn’t participate due to the 50/50 chance of taking a placebo.  I instead read with interest trial results and try to work out whether the drugs might be right for me.  This is a costly exercise as most drugs are not… Read more

Has anybody thought of Chemotherapy?