I'm Feeling Hopeless

[Darn210]

Bubba's Mom,

Just wanting to wish you well on your upcoming trip/appointments.

Also just wanted to share that when I switched docs for my daughter, I spent days coordinating all the testing that was done by different hospitals and doctors and getting copies sent to the new doc. I took copies with me which was good because they had received none of it.

I also wanted to suggest that you take a few of your "cold" weather items . . . I always get cold in hospitals/medical buildings.

[squirmingitch]

We are all wishing the very best for you on your trip & hoping the doctors are brilliant & give you the answers you need to get you back on track to healing for once & for all. Hang in there. You're probably shaky in part with anticipation & not a little anxiety. It won't be long now. You'll no doubt be pretty busy while you're there but give us an update if you can. If not, we'll talk to you when you get back home.

Great big hugs!

[Bubba's Mom]

Bubba's Mom,

Just wanting to wish you well on your upcoming trip/appointments.

Also just wanted to share that when I switched docs for my daughter, I spent days coordinating all the testing that was done by different hospitals and doctors and getting copies sent to the new doc. I took copies with me which was good because they had received none of it.

I also wanted to suggest that you take a few of your "cold" weather items . . . I always get cold in hospitals/medical buildings.

I found out my records were sent to Minnesota, but the nurse called and talked to the people in Florida to set up the appointment. When we were confirming things they said they never got the records. I called and had the nurse resend them...to the right place. We have gotten confirmation that they recieved them.

I'm carrying an accordian file with the same info plus a few more of my medical records, separated by blood tests, diagnostics, etc. for easy reference.

I've written out a time line of tests, and deteriorating symptoms. Will write out a list of my concerns and questions this evening, so I can go into the consultation prepared.

I hadn't thought about bringing a few warm clothes, but you're right, sometimes it's cold in the Hospital. I'll be wearing warmer clothes for traveling, but I should bring a sweater too..just in case?

I'm a little nervous, but eager to see if they can find some answers for me.

Thanks so much for your support girls! I don't know if I'll get a chance to pop in while I'm gone? If not, I'll be sure to check in when I can.

[Blue-eyed bandit]

Please let us know what they find out. Although I'm new to these boards- I've read your posts and sending my thoughts and prayers ur way

[Bubba's Mom]

I'm home from the Mayo Clinic. They did the extended endoscope to check for Whipple's disease, a CT scan, lots of bloodwork, and a brain MRI.

They didn't find Whipples, They don't think I have Refractory Sprue because I have less T lymphocytes than they would expect with that. I have a lot of esinophils(sp?).

The damage to my intestine seems to be getting worse rather than better. I'm on a strict gluten-free whole foods diet. I've cut out soy because I react badly to it, and have cut dairy as a test.

I was told it's obvious that something is terribly wrong, they just don't know what it is. They told me to quit taking my cholesterol med., and Singulair (for allergies).

They put me on Entocort to see if they can stop/slow the damage.

The Dr. I saw in Florida is referriing me to Dr. Murry in MN.(she consulted him via phone while I was in FL) I have to resend my medical records to MN, along with some other past medical test results. They want slides from my prior endoscopes too. I'm told they won't try to schedule an appointment until they have ALL of my records and have reviewed them. It could be 2-3 months. I hope I make it until then.

I was hoping for better answers.

[Aly1]

I've been waiting for you to post and wondering how things went. I'm so sorry they were not able to give you any answers. I know how that must make you feel, you were at your wit's end before going. Sigh.

I've said this to a couple of others - I have a good doc in NYC who specializes in medical mysteries, if this next doc doesn't work out. He's not a god but does not give up and says he has a success rate for helping people of 95% or so. I would be happy to pass his info your way.

I'm sad for you that you are no closer to feeling better than before you went to Mayo. Hugs.

PS re the NYC doc. He is required to see you in person one time but then can treat from a distance, fyi.

[Bubba's Mom]

Thanks Aly. I'm quite a ways from NYC, so I don't know how it would work with your Dr. "House"?

It scares me that I'm not getting any better..and they don't have any answers. Traveling was difficult, even though I used a wheelchair in the Airports.

Some of the tests at Mayo were scheduled for dates that they knew I wouldn't be there for. We told them how long our stay would be. Most of them I went on "walk in-stand by", (where they'll squeeze someone in if someone is running late or miss their appointment). To do that a person has to be at the test site and just sit and wait...for hours sometimes.

I was able to get everything done but meeting with a Neurologist. The fact that my brain is getting spacy and sometimes I lose my balance and stagger to the side a few steps has me pretty nervous.

[squirmingitch]

(((HUGS)))

I have been so worried about you. I don't know what to even say. I was sure you would get some kind of answers. How long can this go on?

Maybe the doc in Mn. can help. But I tell you I would try Aly's Dr, House if this doesn't work or maybe even before the Dr. in Mn.

So sad.

[Bubba's Mom]

It's extra hard because my hubby travels for his work, so I'm on my own most of the time.

He went with me to Mayo. I wouldn't have been able to travel without him...no way!

He's really needed at his job and they weren't happy about him taking the week off when I went to the hospital here, and then when he took me to Mayo.

This week he's traveling within driving distance so he'll be home at night. I need to try to cook. If I wait for him to get home to do it, it will be awfully late at night.

Next week he'll be far away, so I'm on my own. In March he'll be in France for one week.

It bothers me that I keep getting weaker and shaky. I can't go anywhere on my own. It makes me wonder how sick a person has to be, to be admitted to the Hospital..and if I get too bad here they won't be able to do anything for me if I go anyways?

I hoping with all my heart that the steroids will help me! I dunno what else I can do...check into Hospice?

[Simona19]

Hi!

I'm very sorry that your trip didn't come out as you have planed. If I could, I would hug you right now. I hope that doctors in Minnesota will find the answer for you soon. I don't understand why doctors in very prestige hospitals don't have even slight idea what can be wrong. Other doctors already checked for common things. If we go there, we assume that they would check for special, and very, very rare diseases. We don't won't them to repeat what was done many times before. You read my story. In a way they are similar. In my case it has been 21 now months without answers, pills and diagnosis. I hope that somebody would find what is wrong with us. My mom is always saying to me: "Doctor is healthy. He will listen to you, but at the end of the day, he will go home to his family. Nothing is hurting him, he isn't in your shoes. You need to find the way how to help yourself because nobody will." I thing we just need to keep looking for doctors that would have better knowledge about rare diseases until we will find the right one.

[Aly1]

Thanks Aly. I'm quite a ways from NYC, so I don't know how it would work with your Dr. "House"?

It scares me that I'm not getting any better..and they don't have any answers. Traveling was difficult, even though I used a wheelchair in the Airports.

Some of the tests at Mayo were scheduled for dates that they knew I wouldn't be there for. We told them how long our stay would be. Most of them I went on "walk in-stand by", (where they'll squeeze someone in if someone is running late or miss their appointment). To do that a person has to be at the test site and just sit and wait...for hours sometimes.

I was able to get everything done but meeting with a Neurologist. The fact that my brain is getting spacy and sometimes I lose my balance and stagger to the side a few steps has me pretty nervous.

Apparently my doc - Dr. Thomas Bolte - can treat by phone or email but you do have to travel to NYC for the initial consultation (required by malpractice laws I believe).

It sounds like Mayo dropped the ball in a number of ways with getting you in quick to see them, which just sucks when it's a one shot deal. I'm sure when they got to the end and they didn't have any answers you must have wanted to cry (I did). Someone out there has got to be able to do something for you!

[squirmingitch]

You know, I can't even count how many times in the last year or so that I have had friends or heard stories of their family or friends who had problems which were weird & turned out to be caused by cholesterol meds. One woman was at a fast food place with her grand kids when she just fainted out of the clear blue ~~~ cholesterol med. One man who was eerily like you in that he was just wasting away & they tested & tried everything. He had NO health issues except high cholesterol. They finally linked it to his cholesterol med. Another kept getting pancreatitis that would send him to the hospital ~~ cholesterol meds. I could go on but you get the picture. Seems these cholesterol meds do some very weird & scary things to people. Things "they" don't even know about.

[Aly1]

By the way, can I ask a weird question? Is there any chance that there are things in your environment that are contributing to your illness? I ask this because for me it's not just that I was eating gluten (and other allergens for me) all these years, but I have been living in an apartment with a serious mold problem. Dr. Bolte is convinced that that is playing a big role in keeping me sick. (We are really trying to find a new place but wheelchair accessible housing is a problem...)

I ask it only because I imagine it's one of the things he would be thinking while dealing with you. When people get as sick as we are "for no reason" that docs can find, there are usually several different things that are causing it.

Anyway. If you were able to come out this way, I'm sure my hubby and I could help pick you up at the airport and get you to your hotel (we live in a 1 bedroom with a 2 year old so I can't offer you a place to stay. Besides as I said it's moldy!). I don't have a lot of energy so would rely on hubby's help, and he is only available on weekends. But Dr. Bolte takes weekend appointments. Anyway. I know you are nowhere near contacting him or anything, but just to let you know if you were coming out this way I'd offer whatever help we could give.)

[squirmingitch]

Aly, you are very kind to offer such to Bubba's Mom!

[Aly1]

I've been where she is and I know what it's like to be getting worse and worse and fear what might happen next. My heart goes out to her.

[AVR1962]

Bubba's Mom, I do hope you are able to get the help you need and get the situation corrected. You have been thru an awful lot. Take care of yourself and keep us posted.

[Bubba's Mom]

The only med I'm taking now is the anti-depressant, anxiety med, and the steroids.

I hate being on steroids. They have a lot of side effects. A big fear of mine is becoming diabetic and steroids can bring that on.

I was surprised they didn't do more testing too. Most GIs don't do the extended endoscope, so that's the main one I went for. I think they should have tested stomach acid, pancreas production, stool sample, SIBO test, and anything else that might help them figure this out?

Every Dr. I've seen acts like whatever is going on is no big deal. I'm getting so I can't function on my own, and feel like I'm slipping downhill. It's a VERY big deal to me!

They want to make appointments for several months from now..and I don't think I'll be here, or at least not mobile and able to eat/think clearly months from now?

On the outside I look skinny and very pale with dark circles under my eyes. The way I feel on the inside is dire. I don't know how to get that across to them..or maybe they don't care?

Even my hubby thinks I'm "over reacting". He's given me a couple of errands he wants me to run this week..and he needs laundry done.

Aly..you're so sweet to offer me help. I'll keep it in mind. I may go back to the first GI I saw and tell her what's been going on. Maybe she'll have ideas for other things to test for? At least I'll have a Dr. to call on if I need to go to the Hospital?

[Bubba's Mom]

By the way, can I ask a weird question? Is there any chance that there are things in your environment that are contributing to your illness? I ask this because for me it's not just that I was eating gluten (and other allergens for me) all these years, but I have been living in an apartment with a serious mold problem. Dr. Bolte is convinced that that is playing a big role in keeping me sick. (We are really trying to find a new place but wheelchair accessible housing is a problem...)

Dr. Bolte takes weekend appointments. Anyway. I know you are nowhere near contacting him or anything, but just to let you know if you were coming out this way I'd offer whatever help we could give.)

We've thought about environmental things. Nothing seems wrong here though? In the past our basement has had dampness, but my grown son moved back home last May and lives in the furnished basement with no problems.

Our son is 32, but of no help to me at all. He's actually more of an agrivation. He's messy and has a drinking problem. Very unreliable. He gets sporadic work, so is always "borrowing" money. His 2 dogs make a lot of messes.

He was in charge of taking care of the house and dogs while we were gone. We came home to huge mess, and he said he had cleaned up the house. The cooktop was crusty, and had a filthy pan with dried on mess, but he had loaded dishes into the dishwasher and ran it.

[Simona19]

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.

I read your first post one more time. Your symptoms could be associated with SIBO- bacterial overgrowth, if you also have problem with yeast infections. I don't know, if somebody told you about the test, but I had one and I also had milder SIBO. The test is Hydrogen breath test. Open Original Shared Link The assistant will let you drink sugary water and every 20 minutes you will bread in little device which will measure 1, or 2 gases. Please, tell your doctor to measure both gases. I was negative on one, but positive on Methanol. 2 weeks on two antibiotics cure it.

　

"Right after the scope he said my tummy was very red and I had intestinal scalloping indicting damage."　

Red stomach in my opinion means inflammation- gastritis? I had mild gastritis myself at the beginning. My doctor gave me Nexium to treat it.

Check this: Open Original Shared Link

You might have it because your gallbladder works only 30% which can also cause gastritis. Check the reasons for gastritis. Open Original Shared Link

You have both -sibo and gastritis, or non. I just wanted to mention this.

I hope this will help little.

Do you know the results from your endo at Mayo? What was the reason for the redness? Did they check for bacterias (H-pylori,..), sibo, candida, cancerous cells, or just celiac?

[RuskitD]

Bubba's mom, I am new here, and have little to offer you, but a hug! Your story is ripping out my heart.

Because I 'crashed' myself, in January, before figuring out on my own that I cannot eat gluten, the memory of the weakness and hopelessness is still very fresh in my mind. I wonder how you are able to force yourself to do all you are doing now!

My own Dr suggested a trip to Mayo, in Rochester, like it would solve everything for me. I simply do not have the money. Just thinking of being so weak, with my every half hour BM's and trying to do a trip frightened me!

Now reading your experience, I am glad I didn't bother. I am so thankful I found the info I did here, and was able to figure some things out on my own, and begin to heal!

I am so so so very sorry you have no answers! I know what that feels like also!

My husband didn't understand why I cried when the dr told me he found only severe inflammation in my colon. My hunny said it was good news. Yes, but it still didn't give me a diagnosis!

I can offer insight on the cholesterol medicine. Though it sounds like just a guess on their part that they stopped you from that. Your blood work should be showing your liver suffering if it is the statin.

My late husband was on a statin, back when they were new and touted to be so safe "everyone should go on one". He went through a year of barely existing, with numerous neurological problems...like you he wasting away before my eyes and doctors unable to help.... until he finally crashed.

In ICU he was seen by 25 doctors (he had very good care), tested for everything they could think of. His bowels shut down and began to die and they were going to remove them. They put him on 'life support', high doses of steroids and antibiotics. He kept his colon.

They got him back on his feet again, after a month in ICU, but he wasn't well.

It was six months later his neurologist read a med journal article and figured it out. She contacted Merck Labs for a prognosis of healing. They had none at the time, because those with a reaction did not survive. (now the tv ads mention a serious side effect, back then they didn't)

His quality of life was diminished because of this reaction.

He lived another 15 years, and his passing was not due to the statin damage.

The statin could very well be your problem!!!

Again, gentle loving hugs going out to you, with prayers they will help you SOON!

[Bubba's Mom]

I read your first post one more time. Your symptoms could be associated with SIBO- bacterial overgrowth, if you also have problem with yeast infections. I don't know, if somebody told you about the test, but I had one and I also had milder SIBO. The test is Hydrogen breath test. Open Original Shared Link The assistant will let you drink sugary water and every 20 minutes you will bread in little device which will measure 1, or 2 gases. Please, tell your doctor to measure both gases. I was negative on one, but positive on Methanol. 2 weeks on two antibiotics cure it.

　

"Right after the scope he said my tummy was very red and I had intestinal scalloping indicting damage."　

Red stomach in my opinion means inflammation- gastritis? I had mild gastritis myself at the beginning. My doctor gave me Nexium to treat it.

Check this: Open Original Shared Link

You might have it because your gallbladder works only 30% which can also cause gastritis. Check the reasons for gastritis. Open Original Shared Link

You have both -sibo and gastritis, or non. I just wanted to mention this.

I hope this will help little.

Do you know the results from your endo at Mayo? What was the reason for the redness? Did they check for bacterias (H-pylori,..), sibo, candida, cancerous cells, or just celiac?

When I went to the new GI in December I told him I wasn't getting better and asked if it could be SIBO, yeast, or parasites. I told him I wasn't tested for it. He asked me if "Dr. Google gave me that diagnosis"? He said when he did the endoscope he'd check for fluid to test. He found none..and left it at that.

When I was Hospitalized and he said he was referring me to Mayo he said to tell them I should be tested for it. A couple of days later his office called and told me he was prescribing Xifaxin for 10 days..which treats SIBO.

Mayo didn't test for it. I guess they saw I had just done a course of med. and figured I didn't have it, or it was now treated?

When I had my meeting with the Dr. after my tests at Mayo, again I mentioned that nobody has ever tested me for SIBO, Yeast, or parasites. She had me pick up a stool collection kit which I was to ship back overnight, so they'd have it within 24 hours. It was to test for parasites. It's kind of scary that they put me on steroids without testing first. Any one of those 3 will get worse with my immune system suppressed.

[Bubba's Mom]

Bubba's mom, I am new here, and have little to offer you, but a hug! Your story is ripping out my heart.

Because I 'crashed' myself, in January, before figuring out on my own that I cannot eat gluten, the memory of the weakness and hopelessness is still very fresh in my mind. I wonder how you are able to force yourself to do all you are doing now!

My own Dr suggested a trip to Mayo, in Rochester, like it would solve everything for me. I simply do not have the money. Just thinking of being so weak, with my every half hour BM's and trying to do a trip frightened me!

Now reading your experience, I am glad I didn't bother. I am so thankful I found the info I did here, and was able to figure some things out on my own, and begin to heal!

I am so so so very sorry you have no answers! I know what that feels like also!

My husband didn't understand why I cried when the dr told me he found only severe inflammation in my colon. My hunny said it was good news. Yes, but it still didn't give me a diagnosis!

I can offer insight on the cholesterol medicine. Though it sounds like just a guess on their part that they stopped you from that. Your blood work should be showing your liver suffering if it is the statin.

My late husband was on a statin, back when they were new and touted to be so safe "everyone should go on one". He went through a year of barely existing, with numerous neurological problems...like you he wasting away before my eyes and doctors unable to help.... until he finally crashed.

In ICU he was seen by 25 doctors (he had very good care), tested for everything they could think of. His bowels shut down and began to die and they were going to remove them. They put him on 'life support', high doses of steroids and antibiotics. He kept his colon.

They got him back on his feet again, after a month in ICU, but he wasn't well.

It was six months later his neurologist read a med journal article and figured it out. She contacted Merck Labs for a prognosis of healing. They had none at the time, because those with a reaction did not survive. (now the tv ads mention a serious side effect, back then they didn't)

His quality of life was diminished because of this reaction.

He lived another 15 years, and his passing was not due to the statin damage.

The statin could very well be your problem!!!

Again, gentle loving hugs going out to you, with prayers they will help you SOON!

I think only someone who is crashing can really understand what it feels like? It's not that you just feel bad..it feels hopeless..dire!

I'm shocked at what your hubby went through! It had to be very scary for both of you?

I have some muscle wasting now. I've heard of that happening from statins, but it could be my body is just eating itself up because I'm not absorbing what I need from my food?

My last liver function tests looked Ok.

I asked for an A1C to see if my sugar is off. It must have been ok because the Mayo Dr. didn't mention it?

I asked for copies of my test results from Mayo. I was told they'd be mailed to me. It will be interesting to see what they say.

I was very surprised that more tests weren't run. They're supposed to be the place to go to get a good DX and treatment plan. It seems like the Rochester Mayo is better for Celiacs IMO? Dr. Murry there has been in several published articles I've read.

He has asked for slides from all 3 endoscopes, which I requested. Maybe he can get a better read of the situation when he can compare them?

[squirmingitch]

Bubba's Mom, do you eat a lot of brown rice? The news about the energy bars containing high amounts of arsenic got me to researching. Read this:

Open Original Shared Link

Plus I read that the brown rice syrup used to sweeten the energy bars is full of arsenic. Brown rice is the worst with arsenic because the arsenic is mostly deposited in the brown part which gets polished off when making white rice.

[Bubba's Mom]

I eat Aldi's version of brown minute rice about once a week. I eat Koala Crisp cereal every day though. It's made from Organic brown rice flour.

I swear..no food is safe to eat!

[squirmingitch]

How true! Then I don't EVEN want to get into what they do to potatoes to make them last without sprouting. And many other fruits & vegs.

Bout time to start growing our own.