Jump to content

Mito Disease Diagnosis


Recommended Posts

Hey Everyone. So I am currently at Duke Children's inpatient. I have a lot going on but my main thing is .... Has anyone been to duke or duke childrens and been diagnosed with mito disease? If so how? do u remember the doctor? ... Also has anyone had sucess with being at duke for GI issues? if so who helped you? .... I ask because me and my mom are at our wits end. My cardio admitted me saying all these things were gona be done now they say idk why he admitted you and idk wat all we can do. If anyone has been to duke/duke childrens or taken there children whatever it may be .... does anyone have any comments, suggestions, etc? Thanks.

Link to post
Share on other sites

It doesn't look like you've looked into MCAS - from your info line. Many of us are trying GastroCrom at the moment to help stabilize mast cells. This seems to be how my doc is trying to treat us "resistant" ones. We have tried all the traditional POTS meds and nothing has worked for us. So, now we are doing the protocol for MCAS - quite aggressively. We are also on H1 and H2's. (My doc is wanting us to use allegra and pepcid.) Then when the mast cells are more stabilized to add a full strength aspirin. Aspirin will degranulate mast cells. The idea is to create a slow release instead of a massive dump. Hopefully, helping us to not have those surges.

The other thing I've figured out, with me, I have issues with most all grains, dairy, sugar and foods and supplements with sulphates.

The other possible thing to look into is the methylation cycle.

Hope they find an answer for you!

My doc feels that mito is an issue for some of us. But, the testing is just not quite there to pick everything up. I know, recently Potluck got a DX of mito issues. You might PM him and get his thoughts.

Issie

Link to post
Share on other sites

Issie, my friend goes to your doc and he is telling her to do the same mast cell treatment, he didn't do any tests for it or anything. Weirdly enough, when I look up mcad the symptoms are the same as POTS it seems. Is it one and the same?

and do you know why your doc wants allegra and pepcid over zyrtec and claratin?

Link to post
Share on other sites

I've used claritin and zantac before. I'm finding that the allegra and pepcid seems to be more potent. I also notice that the allegra doesn't affect my brain function so bad. One bad thing ---it seems to dehydrate me more. And I'm having more fatigue. But, I'm told that it will take about 2 weeks and the tiredness should get better.

I don't think POTS and MCAS are one and the same. Just another part of the puzzle.

I think our doc ---has seen enough of us "hard cases". To notice when we are all presenting the same. It seems to be us HyperPOTS and EDS people with the same issues. Other meds are not working for us.

Issie

Link to post
Share on other sites

There is a great pediatric geneticist at UNC who is framiliar with POTS and can look for underlying mito disorders. UnC also has a gastric motility specialist that helped me out. I am sorry you are having a rough time. I would be happy to look up the contact info for those doctors.

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...