Twinkle Toes here to say THANK YOU

I am so grateful and appreciative for all of your messages. I know how difficult just typing can be, so knowing you spent some time even replying means so much.

I found out today I still have H. Pylori from about 5 years ago. I had an endoscopy and the gastro. at that time, tried some antibiotic treatments, but I am allergic to almost every medicine that exists. He eventually said well, we will just say you are cured. I told him I am sure I still have it. I told all the doctors I saw at Duke and UCLA about it. But only 1 gastro. ordered a stool test which just came back still positive. So for 5 years I have had that awful bug inside. He says he needs to research how to treat me as I am so allergic. He also says my iron is low so I need an endoscopy and colonoscopy to see if I am bleeding inside.

This never ends. I do have an appt. with a dermatologist on the list Mads (I think Mads) sent me. He is with UCLA. But I talked to his office today to find out if he really works with it or just knows it exists. The front office girl told me she has not scheduled patients specifically with EM. I had to spell it for her. Not a hopeful sign!

I am having such a hard time trying not to take my life, as this pain is so intolerable. I know all of you suffer/have suffered as much. But when I look down the road all I see is a life of managing this hellish condition and good reasons to stick around are becoming fewer each day. My husband and I have been separated for 10 years. He has been helping me for 1 year now, but he has a girlfriend and life .My best friend lives in Florida, and my other closest friend in Florida passed away in July from cancer. I have 3 kids, 2 sons and 1 daughter. 38, 31, 28. My daughter has no empathy for others, and my 2 sons are good kids but I can't ruin their lives by expecting them to take care of me.

Must end now-I am BLOWING UP from heat.

I will let you know what is going on, and I SO DEEPLY APPRECIATE your input.

Twinkle Toes Beth

Dearest Beth,

Use the Dr list I sent you. Also, phone me anytime- you have my number . Or send me your number in private message and ill phone you. I know Alina has sent you her number too. Use us, call us. We know what you are going through.

We are all thinking of you


God bless

mads x

Thank you for letting us know how you are doing Beth.

We want to keep hearing from you please. I wonder if there is hope in treating your H Pylori and if it is successful also help your EM. I know you said it is difficult due to your allergies to most meds but surely they can find something. I know Bugs and worms and such can reek havoc on just about any part of your body so this could be a contributing factor.

I am sorry you are all alone there. You may be physically alone but please know you do have us. I know you don't want to ask your sons to care for you but maybe if they knew how you felt they would just check on you more giving you more to look forward to.

I hope you can get a treatment for that bug and I hope it in turn fixes all or at least most of your other health problems .

Please , please keep us posted. Thank you :)

Take care,


Dearest Beth,

Just as Alina says-please keep all of us posted.Let us know what Dr you access and how that consultation goes. Have deleted u know who ;)

Remember- we are all here for you!

God bless

mads x