Mystery Illness for 8 months really need help

Allergies, blood and immune system
1

Hi,

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

Dizziness

Feeling hot

Painful nodes in neck

Bloating

Nausea

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.

Thanks,

2

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

goodluck

James

3

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 :-)

4

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 

cheers

James 

5

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.

6

Hi,

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 ☺

7

are they mixing you up with another mandy?

8

I dunno but all the mandys on this thread are me lol

9

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?

10

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...). 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.

11

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

12

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

13

Thanks, a lot of people have suggested Lyme but I'm unsure as haven't had any tick bites. Lots of flea bites but no ticks.

14

Mandy fleas can carry Lyme research is now finding. Get advice from Gill on EuroLyme group-Get antibiotics-really helps. Dont wait too long-Mine eventually caused severe arthritis (bone damage0

15

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.

16

Hi Mandy

Have they definitely ruled out Coeliac disease?

17

You could have a combination of things wrong. It does sound like some of your symptoms (itchy anus and unexplained weight loss despite increased caloric intake) are from intestinal worms and since you have cats, it's quite likely, even if you worm your animals. Go to the chemist and buy worming tablets and take them. It won't hurt you to take them if you don't have worms, but will kill them if you do. Don't bother getting tested for worms, it's a waste of time, just take the worming tablets, as I said they won't hurt you either way. That will at least definitively rule out one possible problem. Get tested for Lyme disease and get someone to check you ALL OVER for possible ticks or tick bites. If you have low ferritin levels go on a complete iron supplement. If you're vegetarian it's recommended to be on an iron supplement anyway. You can get chelated iron supplements that don't cause as much intestinal distress or constipation. You may have to try different ones to see which one suits. Good luck