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Dr. DianaKeymaster
Hi Everybody,
Well, I am fascinated by the thyroid nodules and T3 levels being off… I had 3 thyroid nodules (they removed one large one), and I assumed they were spherules from classic EDS. I know that high cholesterol and triglycerides are supposed to be common in EDS…
Do you all who have thyroid nodules have the classic form of EDS?
๐Dr. DianaKeymasterThere is a wealth of information in this brain trust! My tremors are worse in the morning, which I attributed to my poor drainage of CSF and veinous blood out of my brain causing my head pressure to increase in the supine position. I’m also on xanax and diamox (both are listed as treatments for tremor. Amazing.) So those likely help, too.
With mast cell disease, on the mastocytosis society web page, they have a list of “triggers” and MSG and coloring and flavorings are right there, too. So mast cells may be involved. There’s some evidence that artificial sweeteners mess with our blood sugar, too, so I’ll throw that in the pot. Finally, some of these artificial sweeteners increase acidity in our bodies, which isn’t healthy, but it prevents diamox from taking pressure off of our brains if our CO2 dips below 22, which it can do quite easily.
So for now, I think most of us try to keep sweeteners down to a minimum, ditto MSG. This deserves research FOR SURE. ๐Dr. DianaKeymasterHi Momcat7,
Boy, your family sounds exactly like ours! I told my tall, thin, blonde teenage daughter that EDS could be the best, but could be the worst thing that happens to her! (very tongue in cheek – we try to keep a healthy sense of humor about all of this). I’m hoping it’s the best, since we’re making some real headway in treatment, but she still looks like a model. Ditto my son, but he isn’t really into how he looks, and certainly doesn’t care that girls like tall, lean blonde boys! ha. Give him 2 years…
Ah, a sulfur allergy? I may need to google or ask the pharmacist! It’s been so long since I’ve seen someone sensitive to sulfur (no idea why!). Mannitol can be used, but that is by IV, so likely not your first choice! Let me see what I can find out, if you don’t find out first, OK?
Thanks, great question!Dr. DianaKeymasterOh, and Bearcat PPI plus Zantac — ask your doctor — we’re all different, but I take both, as does my son. We have so much acid we need both. They are also our friends because we take Diamox and need to keep the acidity level down in order for the Diamox to work.
Good grief. Health through pharmacy (it’s that or duct tape!). But please ask your doctor, first, OK? You may need to have your blood checked for a while. I had mine checked every week or two for a while. ๐
Interesting about the sneeze thing. I haven’t heard that before, but I’d be interested to see if that sounds familiar to someone else!Dr. DianaKeymasterHi Bearcat,
Don’t you love new websites? I had a ‘bug’ and couldn’t reply to you! This link will take you directly to the theory: http://bit.ly/moYbIB
This link will take you to the theory, video, with all of the references hyperlinked:
http://bit.ly/mxT4hd
I hope that helps! I’m looking forward to your feedback,
๐Dr. DianaKeymasterHi Momcat7,
Hormones – can’t live with them, can’t live without them. ha. I hate to sound like a broken record (boy, THAT shows my age!), but in my theory I talk about how we may have a low level of pressure on our brains that may contribute to our “endocrinology gone wild” ๐
Will you take a peek and see if that could be you? If so, just taking off a bit of pressure can do wonders. In fact, my periods stopped — I assumed menopause, it was about that time –but when I started on Diamox, my periods CAME BACK. Mixed blessing, but my point is that the pressure may affect a lot of hormones! Not just the “female” ones. Believe me, my husband is thrilled to see he no longer has to wonder which of his wives will greet him at the door – Diana or her mean twin BIPOLAR Diana. ha.:)Dr. DianaKeymasterHi Bearcat,
Thank you, you are so kind. I can relate to SO MUCH of what you say!!!!!! Wow!
OK, you MUST look at the theory because it sounds like your instincts are right — hyperadrenergic POTS, and it SURE sounds like you have mast cell involvement. It’s looking more and more like the two go hand in hand.
In our family (yes, no one escaped this – except my husband. ha), treating the mast cells and taking off a bit of pressure on our brains has made a HUGE difference — and we’re not even on the prescription mast cell medicine yet (still taking lots of the over the counter Zantac and Zyrtec – ASK YOUR DOCTOR FIRST). But you may want to take a copy of the theory with you. Until I make it easier to find on the site you can get it by going to this URL:
http://bit.ly/moYbIB In Part 2, I tie all of the conditions together.
I’m so glad you’re here. PLEASE keep us posted as to how you are doing. Personally, I’ve been through it ALL, to the point I didn’t think I’d have ANY ability to think the next day. I also tried to explain to the Mayo researchers about how the bipolar presentation/suicide ideation would turn on and off like a light switch, and that it HAD to be a change in brain chemistry. It seemed to fall on deaf ears.
Oh, I had to stop my periods for a while (a couple of years) because I was SO sick during that time. I assume the change in hormones caused vasodilation — our enemy!
Big hug, ๐Dr. DianaKeymasterLove that! On one of my videos I talked about how satin jammies combined with satin sheets. Talk about turning over in bed easily!
Love your suggestions, and I learned that I could go for DAYS without changing my clothes if I wore your idea of silk long johns.
And while we’re coping, a friend of mine going through chemo and I figured out that our hair WASHES ITSELF after 4 days. ๐Dr. DianaKeymasterHi BeachSandAngel,
Boy, you have really been through it — as many of us mourn for what we’ve lost, we forget there are incredibly strong people out there like YOU who probably don’t even know what it feels like to feel “well”. Sending you a heart-felt (((hug))).
I am researching this overlap in conditions — there are more out there than you can imagine — I’m wondering if you have mast cell disease (or symptoms of it)? I had angioplasty for CCSVI, but the most help I got (besides the mast cell treatment) was Diamox to take pressure off of my brain. Do you have symptoms of high pressure (occipital headache going down your neck, ear aches, squishy ears, more symptoms with valsalva (straining),etc?
I do think that poor venous and/or CSF drainage is to blame for many of our symptoms and I know I was developing M.S. (my right side was dragging around an invisible toddler for one thing). Did you happen to look at my theory? I’m curious if treatment of your venous and CSF circulation may help you…
Thanks so much!Dr. DianaKeymasterHi Momcat7, Boy, you give me WAY more credit than I deserve! It sounds like you, my friend, are the expert on this, not me! Having said that, I was right there with you on the familial trends of late-onset puberty, migraines, anxiety, etc. Yes — those are VERY typical in the EDS family. I believe, like you, that mast cell proliferation and lousy blood brain barriers are to blame for many of our issues.
Where I’m not sure I follow is the MSG thing. Are you saying that you believe MSG breaks down into L-glutamate (the excitotoxin in the brain)? IF that is your question, my answer is I don’t know! It’s an interesting thought, but as far as I know, there has only been anecdotal evidence of this. (Please correct me if I’m wrong). With our lousy BBB’s, mast cells and likely hydrocephalus, I don’t think we need to look further to find reasons for our symptoms — including tremors. But knowing that mast cell triggers involve some funky stuff, I could easily see how MSG may be a mast cell trigger and should be avoided.
That’s probably no answer (you get what you pay for. ha).Thanks for brainstorming! ๐Dr. DianaKeymasterHi Bearcat,
Well, I’ve learned that not only is dermatographia (mine isn’t raised, either) is not only a histamine reaction, it can be a sign of mast cell disease.
Since I posted the question, I’ve jumped on the mast cell bus and my kids and I are taking double dose Zyrtec and Zantac (ask your doc!) until we can see the mast cell specialist. WOW, is it helping!! Meanwhile, I learn that mast cell dz and EDS/POTS are often related. Holy cow!
I think I know why, and am writing Part 2 of my theory. Did you see Part 1? I’ll have a page for it, but meanwhile it’s the first reference under the video called “Why EDS/POTS patients are so ill”. Please take a look! The references for the paper are all listed with links to the articles. ๐ Any you may want to peek at my 2 videos about my symptoms and see if some of it sounds like you. Feel free to holler back if you have any questions, OK?
Big hug… -
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