Mystery Illness for 8 months really need help

Posted , 8 users are following.


I will try to keep this as simple as possible.

Basically I started getting unwell around 8 months ago & am getting worse & worse to the poi t where I'm losing the ability to even fight for help.

My symptoms are:

Weight loss (20lbs) despite eating more than normal & having high calorie shakes on top. (Normally I find it impossible to lose weight even if I dont eat).

Itching skin with small red spots

Pain in ribs, shoulders, hips, all up my spine, and now my neck & head.

Numbness in neck & head & sometimes muffled hearing

Sore nose that bleeds a little


Feeling hot

Painful nodes in neck



Lots of flem & pressure in throat that makes me cough

Very sore & itchy anus

Those are the main ones.

Since it started on my upper spine & neck I've been getting horrendous neck & head pain where I can hardly move my neck. When this happens my hearing goes muffled & I feel very slow and numb mentally. Often feels like I'm slipping unconscious. It got so bad I was admitted to hospital last month but neurology found nothing.

I've had many blood tests, mostly normal apart from slightly high white cells, Ferritin Anaemia & inflammation. The Nuclear antibody was positive but my GP did nothing.

MRI brain & neck was normal

Ultrasound of stomach normal apart from fatty tissue on kidney.

Upper endoscopy - normal.

Lumbar Puncture - normal.

Chest X Ray - normal

ENT saw nothing up my nose or in my throat just a bit red.

I'm getting desperate for a diagnosis & treatment as seem to get worse weekly. I'm not sure if the pain is in my bone or tissue but its a deep itchy burning pain.

If anyone can help please do. I can't take much more. I'm too ill to do anything much, if I move my head around too much the numbness & pain gets bad. I keep trying mind over matter & go out but end up collapsing.


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16 Replies

  • Posted

    Hi Mandy

    i'm really sad to hear of your health problems. I have no medical solutions for you from me but maybe and hopefully you might try a different approach. One that comes with a route a nourishment. I have had a wonderful experience trying the 80.10.10 diet. I haven't been able to enforce the diet 100% of the time but I give it a jolly good go. Its a wonderful way to give you body a break from toxins and clear iself out and reduce inflamation.

    its surprising how much your body can adjust in three days.

    I hope you'll give it a go for your wellness sake



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    • Posted

      Thanks for your reply James.

      My diet is actually pretty much like the diet you mention as I'm vegetarian & eat lots of fruit, veg, nuts & seeds. I also eat a lot of chocolates, doughnuts etc which aren't so great.

      Not sure why I've been logged in under a slightly different name!

      Anyway thanks :-)

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    • Posted

      No problem on the reply 😀


      hahaha, absolutely, life has so many delicious foods available 😜

      The 80.10.10 has a different point of view towards food. Lots of clarity on combinations of food. Worth a read 



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    • Posted

      tee hee

      ode to be mandy!!

      Please do consider that you maybe burdened with worms. The symptoms fit but standard med drs are not familiar with this. How to get you some help?

      maybe ask for a stool test for parasites. also please know that this is an increasingly common problem. After all we worm our animals so why not ourselves?

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  • Posted

    Hi Mandy-Have you been tested for Lyme and co-infections?  Although the tests in UK are not very good i was tested in US and German lab and after 22yrs of being ill tested positive for Lyme-Even so if I was you i would try to get Amoxicilling 500mg 4 day. Dont go with steroids.
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    • Posted


      Not sure if I've been tested for Lyme....does that cause lots of itchy pain?

      I'm waiting for some autoimmune blood test results.

      I've been worried about cancer cuz of all the itching & weight loss but guess many things can cause that & my scans so have been reassuring. I just cant cope with the neuro symptoms I've had since the ligaments/muscles/tissue in the back of my neck started itching & hurting.

      I would love some of the treatment u mention but they won't give me anything until I get a diagnosis.

      Thanks for your response ☺

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    • Posted

      jacquibutter is right...when there is a constellation of symptoms muscular, neurological and organic in nature and nothing's been ruled in or out, think Lyme -- or another tick-borne illness or combination. I found that out after 15 years of mysterious and crippling sickness...but the politics of Lyme make it impossibly difficult to get properly diagnosed and treated. Meanwhile people get sicker and zoonotic diseases get more powerful. Do some research on this (and do remember it IS possible to have more than one thing -- such a happy thought...frown). If you can manage any way to get an experimental trial - at least 6 weeks - with antibiotics, you may find some answers - and there are naturopathic routes to try as well. Keep the faith, good luck.
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  • Posted

    can you ask for more testing mandy? keep searching and insisting x there is a test for lymes too
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  • Posted

    Syptoms sound like Lyme disease-look up euroLyme support group-loads info on there
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    • Posted

      I get tons if flea bites off my cats as the anti flea stuff hasn't been working well the last few years. So i comb them off. My cats are alright though.

      It was the Egyptian mosquito's I had a weird thing happen with a couple years back. Thought I'd escaped bites as felt nothing over there apart from a couoka tiny spots that didnt itch. Then two weeks after I got home the spots got huge & a ring appeared. But I felt fine & have felt fine for over two years after until last year.

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