Peripheral Neuropathy

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Peripheral Neuropathy
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    What's New in Peripheral Neuropathy
    Community Voices

    My day today

    <p>My day today</p>
    9 people are talking about this
    Community Voices

    Let life surprise you…what’s an obstacle you have that is holding you back from happiness?

    <p>Let life surprise you…what’s an obstacle you have that is holding you back from happiness?<br></p>
    1 person is talking about this
    Community Voices

    This gem shares so much wisdom. I grew up w/ the rhythmic, lyrical words in Dr Seuss books & enjoyed the beautiful pictures but there was so much more

    <p>This gem shares so much wisdom. I grew up w/ the rhythmic, lyrical words in Dr Seuss books & enjoyed the beautiful pictures but there was so much more</p>
    6 people are talking about this
    Community Voices

    It's definitely Monday

    Hi folks.
    New to this group so still navigating. I'm a type 2 diabetic and have only been diagnosed since 2018. 2018 was a horrible year. It's the year I learned I was diabetic, the year I lost my ovaries due to endometriosis and a radical hysterectomy. And it was also the year I lost my mom. Yeah, it was a bad year. I'm hyperglycemic AND insulin resistant. Yep, tons of fun huh? So even now, my diabetes is still uncontrolled. It's been a huge fight. I'm currently on the Dexcom system which has helped with my choices. I do ok for the most part. I really am doing my best. Since my bs is not well controlled, I've gotten peripheral neuropathy in my feet and legs. Makes wearing shoes so painful. I'd do anything to get rid of it. So today's Monday has been filled with being a klutz and dropping stuff on my feet. Yep. Ouch. Honestly I'm just looking for a friend who understands. I so need a hug.

    11 people are talking about this
    Community Voices


    I’m really worried. My health is so bad. I’m a mystery to the doctors. I have so many. I’m sad. Upset. I don’t know know how to change things. I’m afraid. My neuropathy is so bad. I don’t know how to change it. I could use some words of encouragement. Please. #PeripheralNeuropathy

    2 people are talking about this
    Community Voices

    My Dad used to say he was “collecting smiles” Being an open hearted and kind person isn’t always as easy it sounds! But a smile goes such a long way!

    <p>My Dad used to say he was “collecting smiles” Being an open hearted and kind person isn’t always as easy it sounds! But a smile goes such a long way!<br></p>
    10 people are talking about this
    Community Voices
    Community Voices
    Community Voices
    Community Voices

    This part wants to tell the story of my close encounters with systemic mold (Aspergillosis) and the almost as devastating CIRS, Chronic Inflammatory Reaction Syndrome, that these encounters triggered. For once, food was not enough to fight this monster, but it definitely played a part.

    In 2015 I moved to a house with a peculiar smell, like decades old curry. Everyone told me I was imagining it. For me the smell was overwhelming and sickening. The moment I set food it in, I started having intense allergy-like reactions, sneezing, swollen nose, bronchitis.

    Why did I not leave? I had to study for some exams and I really wanted to pass them. I felt I had no other place to go. I was quite depressed for other reasons and I wanted to be with someone who cared for me. All this made me ignore my health and force myself to keep going. After all, it was just an allergy, probably to dust (I had been diagnosed one year earlier). Allergies will make you feel awful, but they won’t kill you, do they? So I thought.

    I suffered more than expected for 6, 7, 8 months. In the meanwhile, strange, terrifying symptoms popped up: the usual discomfort and insensitivity in arms and legs that I had for many years (I discovered lately, thanks to never treated Epstein Barr Virus) became full blown neuropathic pain. VERY intense. A heatwave made me realise that my body had stopped sweating, like, completely.

    Two almost fatal heatstrokes, followed by hospitalisation and weeks of recovery on a mountain, suggested this new development was a problem.

    I did connect this with what I thought was “just” an allergic reaction, but I had no idea how the two things could be connected.

    After 8 months I passed all my exams and, as I was suffering too much, I moved back to my old city.

    After some weeks I started sweating again, in two months time I started feeling better. The peripheral neuropathy was still there, but in lesser measure. One neurologist thought i had peripheral neuropathy for “idiopathic causes”, and said he would give me a diagnosis after I got an electromyography. Either the technician messed up badly, either there was something really wrong in my nerves (mold?) but the Electromygraphy gave me horrifying pains 24/7 and completely paralysed me for 3 good months. The neurologist's only comment: "it's not possible". How do you argue with that?

    My mother had to move in with me because I couldn’t hold a cup or move my feet.

    I was given Gabapentin which barely touched the pain. I promised myself that I would bear that only for maximum one year, and if in one year’s time it hadn’t improved, I promised myself that I would check out of life and be free of pain.

    Again, I looked for natural remedies.

    With crippled hands, I typed for hours each day and night (it’s not like I could sleep) searching for solutions. Google scholar came up with some surprising suggestions; research showed that sour cherries juice showed around 70% of the effectiveness of Gabapentin. After 3 articles about that, I sent my mother to look for sour cherries. The juice was not available but frozen sour cherries were very popular. I ate one pound of sour cherries. Weird, weird. Placebo effect? Who knows? Who cares?! the pain was cut in half.

    I was not in agony anymore but still suffering. More searching. The essential oils of Frankincense and Elycrisum can help with peripheral neuropathy. Frankincense didn’t do much, but the ridiculously expensive Elycrysum worked! if only for some hours.

    The anguish was lessening, I was finding solutions.

    I read that fermented foods were useful in reducing

    toxicity and reducing toxicity will help peripheral neuropathy.

    I called a taxi and went to a specialised shop to buy bottles of kombucha and water kefir and fermented vegetables.

    That didn’t help with the PN, but it made me discover that I was hosting a whole collection of parasites.

    Finally I managed to find a simple protocol by a Bob Diamond who researched nutrients to heal peripheral nerves and who combined a really good list of supplements and foods. That helped immensely, and between that and getting rid of some parasites in six more months I had recovered most functionality (although I will never play guitar properly again, thank you Electromyography technician).

    I found a nice apartment to rent, moved in, and after two months I discovered the true source of all my troubles. Remember the house with the strange curry smell? All my stuff, 6k + books, two closets of clothes (my weaknesses) had been stored in that house while I was searching for a permanent apartment in the other city.

    I was feeling pretty fine the day the boxes arrived, I had enjoyed some weeks of almost well being, then I opened the boxes and bam! nose swell instantly, like breathing in ground pepper, chest clenched strikes with instant bronchitis, eyes started to tear out, the pain in arms and legs was back. In two days time, again I could hardly stand. And the whole room I had put the boxes in smelled like ancient curry. This time things were clear.

I got a test kit for mold and I put it in the room with the boxes. 3 different species (Aspergillus Niger, Aspergillus Flavus and A. Fumigatus) came out.

    But I was a newbie to the mold world and I didn’t know what to do. My poor mother came back again and we started washing. Like 8 rounds of washing, with all sorts of natural and chemical mold killers. At the end of all the washing, the clothes didn’t look worth keeping, and they still gave me a terrible reaction upon wearing them (weak knees, pain all over, random nerve pains like in teeth and sciatica, burning on the skin and my personal toxicity indicator, occipital neuralgia). Same with books, precious research books and rare editions, we tried to cook them in the oven, douse them in baking soda, shower them with UV light, and finally resorted to enclose each of them in a ziplock bag. By this time, half of the new apartment was giving me terrible reactions. We cleaned all the walls with essential oils, EM3, borax, alcohol, whatnot, to no avail. Two whole months had passed in these amenities, and now I was again bedridden in constant suffering.

    Thanks to some Facebook groups I learned about toxic mold. The members all said unanimously “toss everything”, but sadly I read it (or accepted their advice) too late, only after I cross contaminated the new apartment. Needless to say, I wasn’t used to losing everything I ever owned, so I plunged into a deep depression. It took me another month to bring all the boxes downstairs to the cellar and to begin accepting the new situation.

    In the meanwhile the Great Parasite War was in full bloom, but I was winning it. I thought everything was sorted out in that department, but I was wrong.

    My hydrocolon therapy lady suggested me Nystatin for candida, and just some days after, Lo and Behold, something new. A bit of candida, clearly recognisable (because, err, really white) but aside from that various pieces of an unseen before spongy beige / grey matter, as thick as my little finger, looking a bit like the inside of a mushroom.

    (continue the gross, horrific mold story)