Weekly roundup

We finally heard from the hospital about my Dad’s lumbar puncture this week and it was devastating news – they still don’t know what’s causing his severe, progressive, axonal sensorimotor polyneuropathy.  They thought it was most probably down to CIDP, but there was only a very slight increase in protein in his spinal fluid so they’ve now ruled that out.  My Dad is angry, frustrated and terrified.

His blood work this time did show decreased B12 at 140 (normal is 200-900) so he’s been referred for B12 injections, however I’m not sure when this has happened so can’t say whether it’s connected to the neuropathy or not.  He’s had enough blood taken to sink a whole fleet of ships in the past two years, so if he’s never had his B12 checked before I’ll fucking sue the NHS, and if he has had it checked it must have been normal so can’t be the cause of his 18 month long neuropathy.

The consultant now wants him to have a full body CT scan.  I assume she’s looking for cancer, but she can’t be that concerned because it’s been a month now since his lumbar puncture and we don’t even have a date for the scan yet (you’re supposed to be seen within 2 weeks if cancer is suspected).

We just don’t know where to go from here and all the while my Dad gets worse and worse…….and worse 😦  I’m hoping to speak to his GP on Tuesday to arrange his injections and I’m going to ask if he’s ever been tested for Lyme disease.  He’s been an avid walker his whole life and we live in an area which is endemic for tick borne Lyme disease which, if left untreated, can cause neuropathy so I’m going to ask the question – we’ve nothing to lose.

I put in a formal complaint to the Managing Director of RMB Automotive about the terrible experience I had at RMB Darlington where I bought my new car, and have not even had a reply let alone an apology.  The fuckers tried to rob me and not even the MD of the group cares :-/

I have been having a serious bash at losing some weight since Christmas.  I usually like to be around 8st 5lbs (119lbs) but in December was 9st 1lb (127lbs) and realized all the peri-menopause induced guzzling of sweeties had to stop.  I’m currently having 2 slices of toast with jam at 8am, a main meal at lunchtime, then just having a fruit & yoghurt smoothie and some cashew nuts for supper with the odd handful of grapes if I get really hungry inbetween meals.  I’m delighted to announce that so far I have lost 3lbs, go me! 😀

Speaking of smoothies, I decided to re-introduce organic, plain yoghurt into my diet.  Some of the info I’ve read online states that live cultures, as is used in yoghurt, contain histadine however I’ve no idea on what tests or research this is based.   From the limited testing which has been done (as shown on my Histamine & Foods: The Evidence page), yoghurt has been shown to be low in histamine so I thought I’d try it and see how it went.  When you haven’t eaten a certain food in five years because you’ve been incorrectly brainwashed into believing it’s bad for you it’s hard to re-train yourself to think of it as fine, and I admit the first night I tried it I was anxious.  I shouldn’t have been, though, because I’m not allergic to any food so it’s not like I’m going to have an immediate anaphylactic reaction.  Histamine Intolerance is more of a bucket effect so even if yoghurt were high in histamine, unless my histamine bucket was already high (which it currently isn’t) it should have been fine.  As it is, I’ve been eating 3 tablespoons of yoghurt most nights for three weeks now and I’ve had no HIT symptoms at all.  I’d forgotten how lovely a banana, passion fruit and yoghurt smoothie was and I’ve been really enjoying them 🙂

I’ve barely picked my camera up since last November, so this morning I decided to try an idea I’d had in my mind for a while.  The resulting picture, ‘Reading by Candlelight‘ is OK I think, though nothing to write home about.

Tomorrow is a friend’s birthday, and he’s invited me out for lunch to a lovely hotel up the Lakes.  That’s my diet scuppered then, and I’ll probably gain back the 3lbs I’ve lost in one sitting, but life is too short not to eat pudding, especially when someone else is paying for it 😉



3 thoughts on “Weekly roundup

  1. Melanie Odell

    Has your dad been checked for Diabetes, or hypothyroism. I think that type of neuropathy is most commonly associated with some sort of metabolic disorder. He should see an Endocrinologist to have a full evaluation.

    Vitamin B12 is most commonly seen with gastroinstinal disorders. So an evaluation by a GI specialist might be something to consider also. B12 deficency is certainly a leading cause of neuropathy but I think it causes loss of sensation also. But heavy metals and yes, as you were thinking infections, are also a leading causes of neuropathy.

    Cheers on the diet. One thing I noticed though. If you eat carbs, ie jam on toast, or fruit and a snack of grapes at dinner always eat protien at the same time. The protien causes the carbs to be released slowly into the bloodstream, that way there is no blood ssugar spike, and your energy stays up for hours, and you don’t get hungry. Calories are therefore released slowly and are burned up by the body far more efficiently. Never put sweets in your mouth without a protien bar, or protien smoothie. It is great for diabetics managing blood sugar, dieters, or for good health in general.

    A book you might be interested in is “Understanding Histamine Intolerance and Mast Cell Activation” by Mariska De Wild-Scholten. It has endless tables of the histamine values, and mast cell degranulation effect of all kinds of foods, medication, and supplements. It is pretty fabulous. I found mine on Amazon.


    1. Jak Post author

      Hi Melanie

      My Dad is being seen by one of the best neuropathy units in the country, so yes he’s been tested for just about every disease known to man and they are still baffled :-/

      I hadn’t heard of the book you mentioned. Can I ask who she cites as the sources for the food testing for histamine? Only, the reviews says she directs people to the low histamine chef and even she admits she can’t find a lab to test for histamine in foods, so I’m wondering what info the author bases her food histamine levels on? If there are now accurate food lists out there I’d be very interested to hear of them!

      Jak x


  2. d

    I’m very sorry to hear you are getting nowhere with your dad diagnosis Jak. So frustrating! I hope something turns a corner and you start to get some answers.

    I have been eating plain yogurt (no gelatin) for a while now as well. I use it as a substitute for sour cream or mayonnaise, or as a dip for veg (just add some salt and/or fresh herbs), as well as mixing it with carmelized onions for a sauce, or tahini and a bit of lemon juice for a dressing. In a pinch you can make chocolate yogurt with some cocoa and maple syrup or sugar. Not as good as real chocolate but it can take the edge off!



Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.