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AU

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Thu, Jul 4 5:53am · Living with Neuropathy - Welcome to the group in Neuropathy

I have had peripheral neuropathy in my feet for at least 10 years and probably about 5 years ago it got to the stage where I couldn't walk bare foot on our outside paths which are exposed aggregate concrete or even on our lawn. I always had to have shoes on because of the extreme pain. I initially was put on Lyrica which after about 6 months I stopped taking because of nasty side effects. I then changed to Endep (amitriptyline) which helped but still had to wear shoes outside. About 9-10 months ago I read about Mindinsoles (www.mindinsole.com)which supposedly helped people with back pain. Ever since I started wearing Mindinsoles in my shoes I have not taken any medication and can walk on grass and rough surfaces without shoes with some soreness but not the extreme pain I used to get. I suggest checking out the website for info but purchase on eBay if it interests you. I bought 2 pairs for about $23.00 Australian including freight.

Nov 27, 2018 · CLL in Blood Cancers & Disorders

I have been buying my EGCG online from Piping Rock for about two years now and it has definitely helped reduce my lymphs levels. I take a 600mg capsule each morning and night. This is the link to their website. https://www.pipingrock.com/egcg.

I don't know what dose should be taken so I took a punt and settled on one capsule morning and night. Anyone know?

Dec 30, 2017 · Gabapentin use for neuropathy in Neuropathy

HI @parus. No I haven’t had any side effects at all. The only thing was being very careful not to drive after taking it. It actually did me a favour by helping me sleep. Until a couple of months ago I did long distance coach driving for three years. On average once a week I did an overnight trip of about 950kms starting at 4.30pm and getting to the destination about 6.00am the next day and back home the following night. Obviously I had to sleep during the day before and after those trips. By taking Endep before going to bed it helped me sleep for much longer during the day and consequently getting less weary driving all night.

It definitely is Endep that I take. From memory my GP said it was an antidepressant that settles your nerves.

I haven’t had Lyme Disease. In fact I have been tested for it by my eye specialist several times over the last 15 years when I have had unknown viruses give my optic nerves trouble.

Dec 30, 2017 · Gabapentin use for neuropathy in Neuropathy

HI Jim. I live in Australia and the first symptoms of peripheral neuropathy I had were probably 15 years ago but very minor and not diagnosed until 3 or 4 years ago. The neurologist claims that I got it from diabetes which I didn’t have until 4 years ago. Go figure! My GP put me on Lyrica which I was on for perhaps 4 or 5 months. In the meantime my wife searched the internet for remedies and found http://www.realhealthproducts.com who do a “Nerve Support Formula” which has Vitamin D, B1, B2, B6 & B12 in it. I ordered some and they contacted me asking what medicines I took. They got right back to me when they saw I was taking Lyrica and told me to look at the side effects on drugs.com. I did and was amazed to see that some things that had recently been affecting me were due to Lyrica. I can’t remember them all but included blurred vision, large bags under my eyes and weight gain. It is also suspected of possibly causing the symptoms of Peripheral Neuropathy!! I went to see my GP and told her of these Nerve Capsules and side effects of Lyrica that I was having. She gave me her blessing to try the nerve capsules but to wean myself off the Lyrica. I did that and blow me down if the capsules gave me just as much relief as the Lyrica. I kept increasing the dosage which helped even more but got to the stage where it was costing me $170.00 Australian a month which we really could not afford. so back to my GP and she put me on Endep (Amitriptyline) 25mg and that was as good as the large dosage of the Nerve Capsules and less than $10.00 per month. It was increased to 50mg tablets 12 months ago. I take it at night because it can affect your driving.

Dec 19, 2017 · CLL - newly diagnosed in Blood Cancers & Disorders

@dougmann

I’m an Australian male aged 69 and live in Queensland Australia.

I was diagnosed with CLL in April 2015 although my white cell count had been just over and just under the Ref Range limit for 18 months prior to that. My GP referred me to a haematologist at The Mater Cancer Care Centre in Brisbane our state capital. He ordered scans, blood tests and a bone marrow biopsy (ouch) which proved the diagnosis.

After a visit to him in August 2015 he authorised my GP to monitor my Full Blood Count blood tests quarterly until the lymphocyte level got to 20. Obviously the Ref. Range in Australia is done differently to the USA. The lymphocyte range here is 1.0-4.0 and the WCC range is 4.0-11.0. Don’t know what it means but in both cases the ‘Units’ are x10^9/L.

My lymphocyte levels have slowly increased over time until 1 November just gone. For instance this year three monthly from January they were 13.08, 13.62, 15.83 and then bang…..jumped to 19.56 which is almost the threshold that the haematologist has allowed my GP to monitor me. She rang me and suggested I have another blood test in early December which would surely put me over the magic 20.

I started to get a little concerned and decided to do an internet search for ‘Symptoms of CLL’. Amongst the suggested web sites was Mayo Clinic which I knew to be a respected organisation. I ticked a few boxes with the suggested symptoms and continued reading through treatments to alternative treatments. An extract from green tea, EGCG, has shown promise in killing CLL cells in initial clinical trials so I thought I’d give it a go. I ordered 600mg EGCG capsules and started having one of a morning and one of an evening from about two weeks before a blood test on 6 December. Miraculously the Lymphocyte result dropped from 19.56 on 1 November to 16.40 on 6 December. The reading had never gone down since diagnosis. I told my GP what I was taking and she said ‘keep taking them!’. Looking forward to my next quarterly test to see if really is helping.