I'm Feeling Hopeless

[Bubba's Mom]

I've been sick for a long time. I kept telling my Dr. I felt awful and had pain in my upper right quadrant, sometimes nausea. My Dr. ordered a gallbladder ultrsound in May 2010. It showed no stones, and my Dr. said there was nothing wrong with me.."eat Tums". I had rectal cancer in 2003, so having digestive "issues" scared me. I also had a yeast infection/vaginitis which was given 3 courses of treatment and then the Dr. said "we're just not going to treat that anymore". I've lived with it.

My health has gone downhill since then. In early Jan. of 2011 my husband came home from Mexico with some kind of bug. I got it too. Don't know if it was a virus or some other kind of bug? He got better..I didn't.

I got so I was so nauseated I couldn't eat, and what I did eat caused bloating and gas and GERD bacame much worse. I had pain in the URQ and LRQ. I started losing weight. My Dr. said there was nothing wrong, but when I insisted SOMETHING wasn't right he ordered a CT scan. It showed enlarged intestinal lymph nodes. He said maybe I should find a GI specialist in a snarky tone.

I did and she ran the blood panel for Celiac, a stomach emptying study, and an endoscope. I was found to have severe villi flattening and a duodenal ulcer. The blood test came back negative, but she DXed Celiac.

I went gluten free and the severe bloating, GERD and gas went away, but I didn't feel better. A food log showed that soy was bothering me. I omitted that. Still felt bad and went looking deeper into supplements and found that some had trace soy or things derived from soy oil.

PCP didn't agree with my Celiac DX and was unco-operative about blood tests to check vitamin/mineral levels. My insomnia and anxiety became much worse, to the point of me only sleeping an hopur or two a night. I asked for thyroid testing and my TSH level was checked and found to be "fine"(1.14) Was given sleep med that didn't work. Then was given Trazadone and it helped some.

I saw a different Resident when mine wasn't available, and asked for the blood tests again. He ran them and found I was very low on iron and said to start a supplement right away.

Still not feeling good, I went to a new GI. He ordered the genetic testing for Celiac, a HIDA scan, and rescoped. Right after the scope he said my tummy was very red and I had intestinal scalloping indicting damage. He said I might have refractory sprue? He said the biopsy report would tell more.

I called for the result of my tests and was told my gallbladder was working at 30%-I should consult a surgeon about having it removed, my blood work was negative for Celiac, and the scope showed moderate to severe villi flattening. I was told I should see an allergist because I don't have Celiac.

I HAD allergy testing, by skin prick (90+ items) and ELISA for the main allergens,and showed no reaction to any food.

I've cut out dairy, soy, gluten, most carbs. I have to take anti-nausea medicine to eat, and I break out into a sweat as the food leaves my stomach and enters my intestine. I still have trouble sleeping, high anxiety, still losing weight. I feel like I'm just slowly dying.

I got a "new" PCP. He's 93. I just saw him. He recommended I try to keep my gallbladder, it might heal? He gave me an RX for nausea med. and ordered a blood count test. He says he doesn't know what else he can do for me. When asked if I could try going off my PPI he said it was a good idea. Long term use has a lot of side effects.

I'm at a loss! Each day I feel weaker, and I feel like I'm slowly slipping away. Anybody have any ideas what I should do next?

[rosetapper23]

Regarding the doctors, FIRE the lot of 'em!! My gosh--so much incompetence, it makes me scream! First, I do NOT agree with the physician who says that you don't have celiac. If you've been following a gluten-free diet, then your bloodwork is, of course, going to come back negative. It sounds as though a lot is going on with you, and I don't know if it involves your endocrine system, your gallbladder, or your vitamins/minerals, etc., but you definitely need help. Perhaps you have a yeast overgrowth? I can't believe your doctor told you to "live" with your yeast infection--that is incredibly lacking in compassion. I realize you've already seen a lot of doctors, but it sounds to me as though you need to find some COMPETENT ones.

[Bubba's Mom]

I wondered about a yeast overgrowth. How do they test for that? My new PCP has told me he is willing to order tests if I want. I just need to tell him which ones to ask for. He's 93, and very sweet, but he told me that Celiac was a rare disease, so I don't think he knows much?

The new GI ran the genetic test. He said I test negative. He has suggested I find a surgeon for the gallbladder, and I was told he is going to refer me to an allergist when I go back for my next appointment.

I was supposed to go back to him 2 months after my first visit in mid December. When I tried to make my appointment I was told "the book doesn't go out that far. Someone will call you to set up an appointment." I never heard back, so I called on Friday. I was told they're completely booked for Feb and are working on March. They don't know why nobody called me.

It's amazing to me that the GI would tell me I *might* have refractory sprue (intestinal lymphoma) and not get back to me on that!

I have NO idea how to find a GOOD Dr.

[rosetapper23]

Bubba's Mom,

I'm sorry--I'm sick with the stomach flu right now, so I'm not prepared to do a search on candida and candidiasis...though I wish I felt well enough to do so. Perhaps you could re-post with a thread asking about testing for yeast overgrowth.

I do hope you start feeling better soon--I'm worried about you!

[ciamarie]

My (not an expert) opinion would be to get some good probiotics. Udo's choice has one for yeast control, with a spectrum of bacteria (8 I think) and extra acidophilus. Some on here suggest Culterelle, I'm not sure if it has acidophilus though.

Second idea would be to eat (drink) meat and vegetable broths, and very well cooked vegetables and see if you handle those. Maybe add in some soggy rice or rice noodles. It sounds to me like your digestion needs to heal and needs food that's easy to digest. Do that for a few days, or weeks?

About the 93 year old doc, it used to be that Doc's were told that Celiac is very rare, only affecting 1 in 10,000, and one site I visited recently said it was thought to be 1 in 5000 until about 2001 when they realized it's more like 1 in 133. So it's far, far more common than previously thought. Especially with the newer 'higher protein' wheat that's grown.

[Bubba's Mom]

thanks so much for your responses.

I sort of crashed yesterday. I got like I was going to faint when I went for my allergy shots. I came home and sat down and got very weak and dizzy..and threw a couple of PVCs (short burst odd heart beats) Which then gave me chest pain and an axiety attack. I thought maybe it was low blood sugar, so I quickly ate a yogurt and ate a handful of blueberries and took a Xanax. I went to walk to the chair and my knees sort of buckled. I called my husband who was out of town. My mind wasn't working right. He got ahold of my son and he took me to the Hospital. They kept me overnight. My blood sugar had dipped and I was dehydrated. The combo nearly took me under.

They kept me over night all of today for observation. I was discharged after eating tonight with orders to call in the morning to get the referral and arrangements for Mayo clinic.

My Dr. suspects Whipple disease, which I haven't looked up yet. Just wanted to check in and will report back later.

You guys are the best.

[Darn210]

Bubba's Mom,

I don't have any advice. I just wanted to send some moral support your way. I hope the Mayo clinic will take a look at the big picture and provide you with some answers and some solutions . . . and I hope it all happens quickly.

Hang in there and let us know how things go.

[pricklypear1971]

Good luck and keep us posted.

[squirmingitch]

Dear Bubba's mom, I am praying you are at long, long, last getting the testing you need to get the answers you need & getting the proper treatment you need! You are certainly one sick girl who needs to be listened to instead of shuffled around & blown off.

I just looked up Whipple's & it does seem like a good possibility. The enlarged lymphs in the abdomen, the malabsorbtion & other things you mentioned.

Whipple's or no; at least you are finally getting some doctors who know what they are doing & that's way overdue. I hope you are finally getting some much needed nourishment & will be on the mend. Whipple's is a long treatment road if it is that.

Please let us know how you are doing when you can. We're pulling for you!

[rosetapper23]

It sounds like Whipple's to me, too. That would explain what your doctor saw in the scope and the enlarged lymph nodes. At least, Whipple's can be cured with antibiotics. Please keep us posted on what you learn, okay?

[Bubba's Mom]

I finally heard back from the Mayo clinic. We thought I'd be sent right there. Nope..they said they could get me in in April. I told the lady I probably won't be alive in April. I told her that I'm still losing weight and growing weaker by the day. I told her my Dr suggested I may have Whipple's disease, and left untreated it's fatal. I have had it bad enough to have strong symptoms for almost a year now. She said she'd see if they could get me in sooner.

Several phone calls to my Dr's office asking if they could pull any strings and the booking people from Mayo my appointment is now March 6. I can call daily to see if there have been any cancelations that might get me in sooner. I hope I can make it until then, and have enough strength to get through the Airport and sit upright to fly.

When I went to the hospital because I threw a couple PVCs and got chest pains and almost fainted, my Dr. came in to see me the next day, and he asked "what I hoped to accomplish by going to the Hospital?" I told him I was hoping to not die.

His attitude has been very flippant and he's acting like my health problems are no big deal.

[faithforlife]

Have you looked into the candida diet.com ? My mom is doing it and experiencing a lot of relief from constant abdominal pain. She too has a resistant fungal infection. She also has had cat scratch fever (from Mexico) and was sick for months with that some years back.

[squirmingitch]

Oh Bubba's Mom, this is heartbreaking! Okay, can you try for a different Mayo Clinic? You are aware there are ones spread all over the country right? Barring that; how about the nearest BIG city to you? A specialist there? Or some other well known hospital such as Shands. I'm assuming you are in the US. You need treatment NOW!

Was it a Dr. at the hospital who said he thinks you may have Whipple's? Can you not go to him?

And yes, there is a candida diet And I know someone who did it & it's the only thing that cured her. She had been getting shunted too. But if you have Whipple's then you have bigger problems than the candida & that diet will likely do you no good at this point.

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DO NOT GIVE UP THE SEARCH! And if you can't get an appointment then just GO there & go through their ER.

[Bubba's Mom]

I had started on a diet that's supposed to starve out yeast. Unfortunately, it cuts out all grains, starchy vegetables, and sugar. It's pretty hard to take in enough callories to sustain me.

Since being in the hospital I've gone back to eating some grains, and starchy vegetables. I was told I need to take in at least 1800 calories a day. I figure I might as well get the calories in and hope they test for Candida at Mayo?

In December I also asked this GI Dr. about SIBO. He brushed me off on that, but someone called from his office this morning and said I'm to start taking Diflucan for it. They faxed the order to my pharmacy and they can't get it in until tomorrow. If I have Candida, the anti-biotics will make it worse? On the other hand...I hope it doesn't sku any tests that Mayo wants to run?

The Dr that first mentioned Whipple's was my GI's assistant. He came in to the hospital in place of my Dr. who was in surgery that day. I saw my GI later in the day. My GI is thinking that's what I have. He said they can't test for or treat it here. I need to see a specialist.

My appointment at Mayo is now moved up to Feb.6. That's better. I was told I should still call daily to see if there are any cancelations that might get me in sooner.

[squirmingitch]

Hallelujah!!!!!!!!!!! Feb. 6th is a LOT better than March! I'm so glad to hear that. Whew! And hoping you can get in even sooner.

As far as candida & antibiotics go I have heard things along the lines of what you're saying but I personally can't say. I know there are others here who have a far better grasp on that than I. And if it will sku any tests at Mayo ..... why don't you ask them to check on that next time you call them? I don't know if you can get an answer out of them as to that but it's worth a shot.

As far as your eating goes; I say at this point it's more important for you to get some calories & whatever nourishment you can than to worry about if you're getting gluten or worry about starving out yeast. Just IMHO. I do imagine they will test for candida at Mayo. Be sure & talk to them about it. Make your notes for talking points to them & make sure to take them with you. You could also take a highlighter marker & scratch each point off as you cover it with them. Remember to take your records from this most recent hospital episode as well as everything from all doctors since this stuff all began. I know you know all this --- I'm just trying to remind you.

And fire ALL your present doctors!!!!!!! Bunch of jack$%##%!

Please keep us posted. I know we're all worried about you.

((HUGS))

[Bubba's Mom]

Thanks so much for your support!

My GI was supposed to fax my medical records. I was told it was 26 pages. I also have all of my medical records because I was in the process of switching PCPs and haven't delivered them to the new Dr. yet.

I have my folder with important points written down. Thanks for reminding me of that.

I hope Mayo can get me sorted out. I don't know if I'm going to want to follow up with the newer GI? He's an arrogant *****!

[squirmingitch]

Screw the newer GI. I always think it's good for docs to be a bit cocky but there's a big difference between a bit cocky & arrogance. It really riles me the comment he made to you about what were you hoping to accomplish going to the ER. Rubs me wrong.

[Aly1]

Wow I can't believe your doc said that about going to the ER! Um, they only keep you overnight if you need it! What an a$$, pardon my french, I have absolutely had it with docs.

I am so sorry for everything you are going through! My heart goes out to you. It's so hard to keep fighting when it seems no one gets it and you haven't got any energy left at all. Please keep us posted. Re the antibiotics - yes they will make candida much worse. Make sure you take as much probiotics as you can to battle it.

Good luck, I will be thinking of you. I went to Mayo in MN and it was very comprehensive. They failed to dx my GI, but I present totally neurologically and this was back in 96 before most docs knew GI was a real issue. So I don't hold it against them. Too much.

One last thing. If by some chance mayo does not work and you are still physically capable, I know of a great doc in NYC who has been coined "the real dr house". He specializes in medical mysteries and is the only doc out of about 20 I saw, to ever help me. He LISTENS, BELIEVES and TAKES YOU SERIOUSLY. He does not, however, bother with insurance companies because they interfere with his ability to practice medicine the way he wants to. He's pretty much a genius who loves to figure out difficult cases that other docs avoid. For anyone who's interested, his name is Dr. Thomas Bolte. (Small caveat: He has a lousy phone manner and since he is on his own with no office staff he is not great about returning calls. So you do have to be persistent at times. But for the desperate person who can overlook those faults he is...priceless.)

[Bubba's Mom]

Thanks Aly. I hope they can find some answers for me.

The Dr. you found is really interesting. I'm so glad you found him!

I hope he doesn't have a crew that will go to my house to snoop..and he skips the part where, like House..he decides he just HAS to open my brain and poke around?!

[Aly1]

Lol, well hey, whatever it takes to get better, right?! He did actually have a case where he went to a woman's home and discovered it was located over a previous chemical dump site. He's a very interesting guy.

Do keep us posted, I will be thinking of you when Feb arrives, and remembering my own Mayo trip. Are you going to the one in MN or ?

[Bubba's Mom]

LOL..that Dr. really is like House!

We're going to the Mayo in MN. We found a Hotel with a kitchenette so I can get a few things for meals. Cereal and coconut milk at least.

I don't know if they admit people for testing? The appointment I have is considered a consultation. We're expecting the tests to be done as an outpatient? I hope they can do whatever tests they'll do in the one week time frame!

[Aly1]

Did you go with a hotel recommendation from them? I ask bc my mom and I stayed in one that was super close - and connected to an underground tunnel system that takes you up into Mayo. It's...kinda cool . So you just go back to your room between tests to rest if you so choose, or there's a small shopping concourse on a lower level where you can kill some time. I got a great sweater there actually .

There's a Mayo store in the main level where I rented a scooter; I think it was $25/day but who knows if my brain is remembering that accurately. It was also 2006 so the price could have changed.

When you arrive at some point they will give you a schedule of the tests they will be doing, when and where in the building, and they will add tests if they see fit.

For the airport I recommend if you are weak that you ask your airline for a wheelchair. They will give you one and someone will even push you through the airport to and from your gate (and, you get to jump security lines and get on the plane first.)

[squirmingitch]

Glad you popped in here Aly1! What great info. for Bubba'sMom! How fantastic that you've been where she is going & can give her all the 411. We're all so worried about her. Your Dr. House sounds tee-riffic!

[Aly1]

Glad you popped in here Aly1! What great info. for Bubba'sMom! How fantastic that you've been where she is going & can give her all the 411. We're all so worried about her. Your Dr. House sounds tee-riffic!

I have no idea how I missed the original post but when I read it tonight I was worried too. Bubba'sMom gives such great advice...it's funny, for some reason I assume everyone on here who gives great advice must be all cured and feeling well, so I was really sad to read about all that's been going on. It wasn't very long ago that I was so weak I had to choose which counter in my kitchen I would wipe that day -and I was only able to do that two days a week. I know what it feels like to see your life fading away and have no one figuring out why, despite your best efforts to get help. They really do such a comprehensive job at Mayo so hopefully they will figure out what's going wrong here.

PS. I love your screen name Squirmingitch!

[Aly1]

Oh another note Bubba'sMom - the tunnels under Mayo are pretty long. I don't know if it's the case with you but if walking is a problem for you energy-wise perhaps you can send hubby to get that scooter and bring it back to the room for you. Something to consider if you need to conserve your energy, it sounds like you do!