just read this and found it interesting, I definitely have major problems with medication effectiveness and digestive issues. When first diagnosed i had no stomach issues 5 and half years in i have problems with my digestion not initial stomach breakdown of food but digestion through the intestine causes havoc with medication. I wonder if the medication is adding to these problems or even the root cause. My neurologist has never looked into this even though i tell him every time no matter what i eat it brings my slowness n stiffness on, even fruit or a home made vegetable soup avoiding dairy gluten or sugar seems as if any food can trigger it now. wondering if the medication I need is destroying my intestinal biome. Starting to consider bacterial replacement therapy. i was sent to see a gastroenterologist. didn't manage to get a sit down appointment only a phone conversation no tests where done and after a brief phone call i received a letter basically saying he couldn't help. this was all done on the NHS which for my condition i am now realising i can no longer depend on for any real in depth research into my problems they are basically a prescription only service not interested in delving any n further than a diagnosis. I always have struggled with medication efficiency only ever getting around one hour relief from a 125mg Sinemet even less as i have progressed. therefore I'm taking seven Sinemet through the day and one slow release at night alongside usually one or two more instant release to get me through the night otherwise i don't sleep due to stiffness causing me discomfort. unless i basically dont eat anything my medication is basically useless. i know this is a unusually high amount of medication for someone relatively not that far into my life with yopd.
im not that bad with the disease i have no tremor and strugle with only stiffness and slowness of movement when in off state.
im just concerned that my medication while short term relieves these symptoms may be harming me more than anyone realises long term.
my neuro has suggested dbs or the levodopa pump in my stomach but at forty years of age i didn't really want to undergo this type of treatment until absolutely necessary
im taking high dosage thiamine along with most other recommended supplements.
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Todd-pw
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also privately diagnosed with lymes and successfully treated. which improved my condition tremendously leading to the judgement my condition is definitely caused by a immune or bacterial problem.
Hi there, the one thing I’ve learnt in my 77 years on this earth is that you must have a good team of doctors around you. It’s not easy, but we have finally managed it. The most important thing is that they must care.
My husband’s neurologist is accessible and will fit us in to his very busy schedule at short notice when necessary. He also doesn’t think he knows it all and been quite happy for us to try vitamins and supplements (B1, Mannitol, coronet).
Our GP has been the same. His diagnostic skills are exceptional. Ditto his Pharmacologist, who manages his low and high blood pressure. We also have a pharmacist who has over the years has spent a lot of time checking research (Mannitol etc)and interactions between supplements etc.
Your neurologist doesn’t seem to qualify, and as for the gastroenterologist, wow!
Many years ago (45) I had a bleeding ulcer, misdiagnosed by 2 GPS and a specialist. Our now just retired GP took one look at the file and knew the immediately what was wrong. By which time the bleed had stopped. I went to a naturopath (recommended), who gave me a diet low in fat and with a list of foods and how much of what I could eat. A couple of examples were no fruit juice, one orange a day, avoid soups, casseroles, just to mention a few. It was so helpful. All the medical profession could recommend back then was No Coffee.
I have been on Somac (Pantoprazole) ever since. I’m not as good as I could be, but who’s perfect). But knowing what causes your stomach to play up helps.
Too acidic, I think. Juice of a lemon every morning. Porridge rather than muesli, as gentler on the stomach. Lots of steamed vegetables. I’ve just been reading it again. I’m nowhere near as good as I was back then, but then I needed to be. There is soup, but no meat stock AND of course, no alcohol or tea and coffee! oops 😏
It certainly was a great help, as like Todd-pw, I felt as if everything I ate made me feel off.
It says “meat broth or soups, meat extracts or gravy”. It actually doesn’t say all fruit juices, but orange juice in particular, and only one orange a day.
It’s interesting to see the list of vegetables. Of course, we are talking the 1970s. We’ve come a long way since then, thank goodness.
We didn’t have dietitians back then, like we do now, so this naturopath was a godsend for me. She didn’t prescribe a heap of vitamins etc, just a low fat, low acid diet in great detail.
Ah, I see that was a long time ago. I guess packet stock powders have lots of salt and additives and sugar. Bone broth seems to be recommended these days but only from organic animals. Oranges I suppose have lots of sugar. Citrus is something my husbands genetic report says to avoid for some reason. Low fat now seems to be discouraged in favour of low carbs. Funny how things change.
No, acid was the base of the instructions. Oranges are very acidic, consequently only one a day. Fatty foods still really upset my gut, including eggs, cream.
Plain foods, steamed vegetables and grilled fish or meat was the order of the day. My stomach is still much happier if I stick to this diet, BUT it’s too boring.
I see that bone broth is supposedly alkaline, whereas animal meat generally is acid forming.
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Anyone trying LDN or interested in it?
Thiamine therapy for yopd
Problems with extended release Carbidopa Levodopa .
Is my neurologist right?
