Lisa Brown
Forum Replies Created
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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.
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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”
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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.
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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 catheter for Xmas as even relatives toilets are too low to get off.
I have even been stuck sat on a hospital toilet, crying as I didn’t have help.
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Are there any updates on this?
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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.
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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. Mexico was a bit too far up my worry scale. As my decline appeared to be speeding up, coupled with family pressure, I opted for a medical holiday. Stem Cell Care in India. Questionable -Yes, deep down, I didn’t believe it would help. However, it did help my lungs briefly, maybe 4 weeks better breathing.
To sum up, and this is only an opinion, stem cells are great for injury repair.
I believe best course of action for all pALS is to find a ‘Functional – Root Cause’ doctor. Just like ADHD was rare in 1978 ( 1:150,000) but now 1:40, could ALS just be a virus?
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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. GI Health. (Leaky gut)
I knew I had toxin exposure with my sign making vocation and weed killer from a teenager (245T)
If you want tests find a ‘functional medicine’ doctor. FXMED do the tests.
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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 b in a wheelchair, speech going, arms on their way. I found a ‘functional’ doctor who arranged the tests – all of which were performed in the USA. They found other problems with gut flora and deficiancies which I am addressing. My research for a magic cure has been fruitless. However, there is a way forward and it starts with gut health. Most of us have a leaky gut and in my experience, if your not farting you’ve got a problem.
Tests include: tick borne diseases-borrellia, gut health, GI health, viruses eg HSV,CMV, pathogens.
Find a Root Cause doctor.
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@valentina, you can see people who visited Bodyscience on their website and facebook page.
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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.
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Don’t you think that kinda destroys the thread of original topic?
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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?
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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 with your post, there is plenty of ‘research’ but there is not one actually looking to find the root cause in each individual. Body science does this and this is the answer I need to move forward with my sporadic reversal protocol. At the moment I am only guessing.
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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:-)
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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.
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thankyou for spelling the out Ann.
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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.
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Thankyou for your input.
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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?
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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.
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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 naturopath and kill off all viruses and address other needs from tests.
Start with cleansing the gut and detox diet – fulvic/humic acids – medical medium detox. Makes me feel great and with energy to get up and last all day before collapsing in my arm chair.
Hope this helps.
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Hi Bill, can you advise where to purchase Clenbuterol? Thank you.
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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 meds.
Look after yourself.