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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. H

    Anyone improve from bed/housebound to high level of functionality?

    Wonderful hope she continues to do well!
  2. H

    Feeling Cold...

    Is that tea time? I have high blood pressure I cannot go near salt. I do love salt and vinegar potato chips. Omg I love tea too!
  3. H

    Miami VA/Dr.Nancy Klimas research volunteers wanted

    Stress test?... Never had one How long would it last? On a treadmill?
  4. H

    Miami VA/Dr.Nancy Klimas research volunteers wanted

    Have not heard back yet. We have to pay for this study?
  5. H

    Feeling Cold...

    You took the words right out of my mouth. About 5 or 6 pm everyday for years now I get really cold. It is weird that it is the same time everyday. My family just looks at me like I am crazy. I put on socks, housecoat you name it to warm up. The time is the same everyday!
  6. H

    Miami VA/Dr.Nancy Klimas research volunteers wanted

    Emailed last night Got a reply this morning right away. The reimbursement is 200.00 and 3 visits to Miami. Susie
  7. H

    son over 30 was to see Dr Lapp tomorrow. We hit a deer so he cannot get there.

    Dr lapp in Charlotte nc not Cheney. How do you test for pancreactic insufficiency?
  8. H

    son over 30 was to see Dr Lapp tomorrow. We hit a deer so he cannot get there.

    I am rattled it was not dr Lapp it was Dr Cheney he was going to see in NC. I really am at a loss what to do? Can you tell?
  9. H

    son over 30 was to see Dr Lapp tomorrow. We hit a deer so he cannot get there.

    Went to doctor gastroenterologist?? spelling? Thank goodness no hep c and no giardia. Still no answers but I got him off cymbalta and he does not seemed so fatigued. The docs have given him an ultrasound of abdomen and cat scan and one more I cant remember. His alt was just slightly elevated...
  10. H

    Do You Have Fibromyalgia

    your fibro went totally away??? no pain? That is awesome as I sit here now freaking hurting all over. Is your main symptom now severe fatigue?? Who was the autonomic specialist? Thanks Susie
  11. H

    Stools almost white color and mucus! how many have had this symptom??

    He had all these symptoms before he started the cymbalta. He was on Celexa before this and klonopin at night. Due to pain in his lower back slipped disc and other disc issues he was put on cymbalta. Now he has had a epidural for the lower back and that does seem to be helping. Granted he is not...
  12. H

    Stools almost white color and mucus! how many have had this symptom??

    He is getting a test for giardia and hep c. the only drug he takes is cymbalta 30 mg. Thank you Tristen, Docs think he just panics right away. This has been happening off and on since april 2011. I am thinking should he get off the cymbalta??
  13. H

    Stools almost white color and mucus! how many have had this symptom??

    I hope so too Enid Thanks how high dose of amoxicillan and for how long?? what is removal of roots?
  14. H

    Stools almost white color and mucus! how many have had this symptom??

    Thanks Rich This doesnt happen everyday. His doc liver doc thinks he is over reacting. Since he has a panic disorder!! He has had a ultrasound of abdomen of liver and stomach also a cat scan. Yes his urine is very dark. No he is not jaundiced. My husband is jaundiced. He has had hep c for...
  15. H

    Stools almost white color and mucus! how many have had this symptom??

    Son gets extremely fatigued and then bam it hits he has this stool color. Not all the time way before he was on cymbalta. He is on milk thistle and vitamins c and b. Doing a parasite (giardia) stool test. Being tested for hep c. Thought he had but no one ever tested him. Hope not. Hubby...
  16. H

    Klimas is GONE from UM !

    I called today to see if son could get in to see Dr Klimas. The lady said we are in a transition. So hopefully she will call me back.
  17. H

    Is it normal to for a son to say I would rather stay asleep than be awake.

    Marg, He is on cymbalta and takes it in the morning. That is the only pill he is taking. I wonder if he brought it down some would it help? I have the problem going to sleep and staying asleep. I use earplugs 1mg klonopin and quiet. Oh yeh and I take one 5 mg valuim. I also wonder if his panic...
  18. H

    Is it normal to for a son to say I would rather stay asleep than be awake.

    I ask him why? He said because I am so fatigued I cannot move.
  19. H

    son over 30 was to see Dr Lapp tomorrow. We hit a deer so he cannot get there.

    Thanks Justy, He needs to change some circumstances around him but he does not want to leave his daughter. He would be 2 states away. He has no room he sleeps on the couch. He has had slightly evlated alt enzymes. Done an ultrasound on liver and abodomen and cat scan everything was ok. He...
  20. H

    son over 30 was to see Dr Lapp tomorrow. We hit a deer so he cannot get there.

    I do have all wood floors and no carpet. He has animals in the house I dont. I do not drink milk and he did not drink milk at home. He drinks a lot at his home. His house was built about 3 years ago mine 40 years ago. Both are brick homes. He has 4 children under his roof and I do not. He had...
  21. H

    son over 30 was to see Dr Lapp tomorrow. We hit a deer so he cannot get there.

    Everyone is fine but the deer are running like crazy. Two nice size deer hit the car we were all in and now to get it fixed. On the other hand talked to Pam and we are going to make another appt with Dr Lapp. Whenever we ( meaning all of us can go). Let me ask you something. He was fine while...
  22. H

    son 30 who is feeling tired and ill. Dr Lapp nov 30 th

    Yes, he does not live but 2 hours from Charlotte NC. I am going to record everything he says. There is no way you could remember it all. Well I couldn't anyway. As you can tell from a lot of my post. lol
  23. H

    son 30 who is feeling tired and ill. Dr Lapp nov 30 th

    Yes, I am going with him. I read some reviews on md reviews and they werent encouraging. It was more or less Dr Lapp talks to you a lot. I am going to give him some hope and told him he needed to know he was going to feel better and not die. Every week you could see Dr Lapp or Dr Black did not...
  24. H

    son 30 who is feeling tired and ill. Dr Lapp nov 30 th

    Did not remember if I had posted that he was going to see Dr Lapp Nov 30. Just to let everyone see so we can follow his progress and see if he thinks he has CFS. Friday he is having the epidural injection for a slipped disc in the lumbar region. Say a prayer it will help for that pain. He...
  25. H

    HUNTER HOPKINS IN ASHEVILLE NC? ANYONE? Dr Lapp or Dr Black???

    Trying to reach anyone out there? Seen reviews on Dr Lapp google some not so good. Then again I think people put reviews up usually when they dont like a doc. I would love for anyone to talk about this place and what it has meant to them. Thanks Take Care Susie:cheeky grin:
  26. H

    son 30 what to do? his ultrasound came back fine doc thinks it is all in his head!!!!

    Thanks Kurt I understood no bad feelings. In fact where would I be without all of you? I am very sorry for your daughter suffers from this dreaded crap. My problem, he calls at 9:45 wife gone to store. He has been home all day all 4 kids gone to school. Cannot function I am non existent, cannot...
  27. H

    son 30 what to do? his ultrasound came back fine doc thinks it is all in his head!!!!

    The moons on my thumbs are only left now. I appreciate all the help from everyone. It is like are we missing something God forbid? That could make him feel like this? I am just assuming it is cfs but I would have a hard time convincing him of this. Kurt you did not offend me but it is his state...
  28. H

    son 30 what to do? his ultrasound came back fine doc thinks it is all in his head!!!!

    I called Hannah and she got my number and that was it. She was not a happy camper that we had cancelled. Thanks Susie
  29. H

    son 30 what to do? his ultrasound came back fine doc thinks it is all in his head!!!!

    It was 350.00 for the first visit that was no testing. Tilt table 500.00 etc and you file.
  30. H

    son 30 what to do? his ultrasound came back fine doc thinks it is all in his head!!!!

    He has Blue Cross of Nc and they Hunter Hopkins lets you file??