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Thanks for the hint Diana but I’m on top of it!!
My MCAD doctor says that the only reason I’d want to disolve the powder before drinking is if I had lots of mouth/throat symptoms which I don’t – all my GIish symptoms are mostly at my stomach or “later” in the GI tract so the capsules are 100% fine for me. And they definitely help with the explosive diarrhoea and other gut symptoms which is a relief!
Unfortunately my MCAD guy seems to be irrationally biased against Ketotifen 🙁 He tried it on two patients and they both had uncontrollable weigh gain and had to come off it, so he’s very very reluctant to try it. Because of the prescribing rules in Australia I can’t get it covered by insurance unless he specifically prescribes it, otherwise I have to pay full price and I can’t afford that! So I’m working on him about it still … *touch wood*. I’ll keep you posted!!
For GI-based mast cell issues, oral Sodium Cromoglycate (aka “Nalcrom”) in capsule or liquid form seems to be the best thing. The dose I take is 600mg per day (6 capsules) and I’ve seen other people on 8 per day. For me it helped a lot with nausea, diarrhoea, bloating, and reflux.
The main drawback in my case is that it’s fairly expensive for me but that will depend on your insurance situation! Everything I’ve read seems to indicate it’s a quite safe medication to take.
rSeptember 9, 2012 at 7:48 pm in reply to: Did you see the new vid about thrombosis and my MTHFR results? Please let me know your thoughts. #2906
The website http://geneticgenie.org/ can help you with interpreting the 23&me; results into a format that says which of these genes we’re interested in, and it helpfully colours the results red/yellow/green so we can see which ones are best/middle/worst! I offered my programming skills (such as they are!) to the guy so hopefully the rest of the site will be operational soon too.
I am also quite doubtful about whether this is very relevant to us – there’s definitely a potential but it seems to me like a fairly low probability thing to be trying. There have been so many people in the ME/CFS/Fibro communities focussing on this methylation stuff for years and years and admittedly without the gene testing part but most of them aren’t any better than they were when they started … so I remain fairly skeptical about whether it’s very helpful for many people.
On the other hand I have the most common mythylation defect being C667T homozygous, plus being homozygous for the MAO A and two COMT defects so there is a *potential* thing there for me. But yeah, I’m not actually going to do anything about it as yet … if it really is helping people, that’ll become clear pretty soon I figure.
This is really interesting to me … I fit the clinical “mito” picture pretty well too. Well enough that I have had the full “official” workup including muscle biopsy (ouch!!) and all the scans/tests/bloodwork/etc that you can imagine. The official mito docs decided that I didn’t have a classical mitochondrial disease in the end, and my muscle biopsy was reported normal.
That was before I had the EDS/MCAS/Dysautonomia diagnoses, and apropriate meds/treatment for those three has helped quite a bit so I am thinking my current diagnoses are likely to be correct. It says a lot about how our cases can present though, that we’re getting worked up for mito!
He sounds like me! ha. Thank you for your kind words — they mean so much. (BTW, comments on Amazon can make or break a publication, if you are so inclined. I’d be so grateful). I was working on the paper copy again last night– my hubby is my volunteer, poor guy. We’re getting closer! 🙂 Diana
No worries – I left reviews on both parts, so hopefully they show up for you!!
I don’t suppose it’d help you to have more volunteers? I’m good at computer stuff and would be willing to help with that. Let me know if there’s anything I can do, OK?
I love my waterbed!! I can set the temperature a touch lower than normal so I stay cool and don’t overheat and it is so flexible it cradles me! I have mine what the waterbed guys think of as a little bit under-filled so it’s more “cradling”. It’s unusual but fantastically comfortable.
And I have cups with handles and lids and straws so that when I tip them over (I always tip them over!) they don’t spill so much.
What’s a “complement” I don’t think I’ve ever heard of those …
Unfortunately I have one of those doctors who’s basically allergic to technology – he doesn’t do email, he’s not on the net, he doesn’t have a Kindle, he isn’t interested in reading stuff on the screen 🙁 I’d be THRILLED to buy him a copy for $0.99 but it’s just not practical 🙁
Also I think if I give it to him on paper than it’s easier for me to go through it first and highlight bits and stick sticky notes on the pages explaining which bits seem to apply to me most strongly, etc. I must be old-fashioned but I really do seem to “think better” when I can scribble on paper instead of typing notes on a screen!!
I totally understand your frustration at the document ending up all over the place and the message getting distorted, etc. That must be infuriating when you’ve been so careful to put it all together for us!
After 37 years of not really properly fitting into any category fully, it’s like a *miracle* to read this and recognise myself in practically every paragraph! From the huge head to the EDS to the mast cell and POTS and fatigue and … the whole thing. And because of that, I want to give my doctor every chance I possibly can to react positively to it! Most of my doctor’s reaction I can’t control, of course, but at least I can present it to him in a form that he’s most likely to want (i.e.: paper) and write notes so it’s obvious to him which bits of it most match me. I guess that explains why I so desperately want it to be in hard-copy form.
I really hugely HUGELY appreciate all your time and energy and effort that you’ve spent on making this available for us. THANK YOU 🙂 🙂 <3
Ohhh good that will be wonderful Diana! I really want to print out a copy for my various specialists and trying to print from the kindle app is hellishly hard!!
This is why we need to have a PDF version – it’s almost impossible to print an ebook 🙁