My first visit to see Dr Klimas and team (Success in the End)

[Belbyr]

The doctor mentioned IVIG for the fact that I have low IGG and IGM which he thought maybe something good could happen... After this last visit I could tell he was ready to hand me off to someone else.

I'm not sure if they are far enough along to do punch biopsy with endoscopy or not... Maybe it requires a surgical cut. This same hematologist recommended a local neurologist that knows a fair amount about autoimmunity, IVIG, and muscle issues. He also recommended a Dr Abell in Louisville that knows the ins and outs of GI motility disorders and tries to get at what causes them (muscle or nerve).

I've already submitted all my info to the neurologist, Dr Abell is a 9 month wait.

I think we have hard evidence now something is being attacked, is it muscle or nerve? That is the question.

 

[Belbyr]

New update, I think we have found why I have consistently high creatinine and protein in my urine. I just had a kidney stone last week and it still has not come out after 5 days. They found another stone bigger than 1cm in my other kidney!

Now I have to get the roto-rooter done to get both stones out. 2019 can go to hell...

 

[ljimbo423]

Now I have to get the roto-rooter done to get both stones out. 2019 can go to hell...

I heard they can use sound waves to break them up. Is this true?

 

[Belbyr]

I heard they can use sound waves to break them up. Is this true?

I think you are correct but I don't think it is as easy as it sounds apparently. I see they have to put you to sleep for it which strikes me as odd.

 

[vision blue]

Hi. I havent' read thru th emiddle 5 or so pages of postes and also haven't gone yet to see if can find your whole story from beginning.

The intense stomach pains and nausea reminds me of something i just read about- its in the first chapter of a self-published book by a layperson who also had this thing- whose name is suddently escaping me - in addition to MCAS. its the MCAS she wrote the book about (not worth reading) but she also had this other thing in addition- guess that's not helpful, so i will try to look at the book again. the pain would be so bad she's lie on the floor in agony and no one could find what it was. also nausea with it.

i'll assume with all that blood they tested for simple things like old e-coli infections. again, have to read thru everything on your history to see if your immune issues were acquired and consistent with your body trying to fight off a chronic infection.

i just saw a hopless pcp today. not even sure why i keep him except i need someone. doc i like retired. He said himself, "he likes to keep things simple". But us zebras are on the opposite end of the spectrum and simple does not work for me.

will try to follow your story. i can't get on here very often anymore.

that blood draw would kill me btw. my limit is now up to 8 ml. That's less than 2 standard 5 ml tubes. just went through hell squeezing in as many tests as possible for that 8 ml which requies cajoling and getting docs to call the lab after the draw to add on more things. EVen when they know to do "minimum draws" , even then, that's about double what they really need. So did squeeze out 13 tests i think which i'm proud of- but still getting nowhere. I'm in a adreniline overdrive state still (always am now but visits make it worse) and think maybe i should not have gone. all choices are bad with this illness. ok, i better stop rambling and co-opting the thread. blame the adreniline...

 

[Belbyr]

Things have taken a turn for the absolute worse. My parents are now having to monitor me 24/7 as I deteriorate. My throat/esophagus are very painful now and swallowing is becoming a chore. Food is just about out of the question. Nausea/abdominal pain on a scale of 1-10 is consistently a 7 or above, mostly around an 8.5 with no end in sight. Ativan has stopped helping as well.

It is good to know you all. It makes me me feel less alone, but I am still overcome with the loneliness, sorrow, and fear. I'm just so tired. Thank you.

 

[Gingergrrl]

@Belbyr I just came on PR about a minute before you posted that and am so sorry to see how much things have quickly deteriorated. This very quick turn for the worse could turn around again for the better and sounds like something is acutely going wrong (either new or an exacerbation of existing issues).

I am glad that your parents are with you and I hope they are supportive (I think that you said they were but cannot remember). Do your doctors know about this acute worsening of your throat and swallowing? Would going to the ER or calling one of your doctors help?

For what it's worth, I had a doctor tell me if my lungs did not plateau or get stronger, I could end up on a ventilator. But then by mid 2016, I found the right treatments. If you would have told me at that time that I would breathe normally, walk normal/ unlimited distances without a wheelchair, drive my car again, and stop having anaphylaxis to food, I would NOT NOT NOT have believed you.

I am saying this comparison b/c I believe that the true cause of your suffering has not yet been discovered (as it was not for me for several years). Please do not give up. You have been a rock star/ warrior in trying to sort this all out, and I totally understand why you deserve a break. So many of us are following your journey and we care about you so much.

 

[ljimbo423]

Things have taken a turn for the absolute worse. My parents are now having to monitor me 24/7 as I deteriorate. My throat/esophagus are very painful now and swallowing is becoming a chore. Food is just about out of the question. Nausea/abdominal pain on a scale of 1-10 is consistently a 7 or above, mostly around an 8.5 with no end in sight. Ativan has stopped helping as well.

It is good to know you all. It makes me feel less alone, but I am still overcome with the loneliness, sorrow, and fear. I'm just so tired. Thank you.

I just want to let you know that I hear you. I can't even imagine how lonely, sad, scared and tired you must be feeling, but it makes sense given all the suffering you have been enduring.

Although I wasn't in nearly as much pain as you are. I was mostly bedridden for several years and in a lot of pain.

I had accepted that my life would be like that forever. I have since learned ways to treat my CFS that have dramatically turned my life around. My quality of life is quite good now.

I guess I'm just saying, hang in there, you never know when you might learn something that can help get you out of this agony and on the road to a much better life.

 

[Mary]

@Belbyr - like ljimbo423, I can't imagine how lonely, sad and scared you must feel. I can't imagine your suffering either. But I can imagine an answer for you. Despite everything, I believe our bodies are made for health and just as Gingergrrl found some answers after firmly believing there were none, I think there are answers for you, and all the rest of us. And I know they can't come soon enough either!

This may sound absurd and simplistic, but I've just started looking into grounding or earthing because I'd read it was supposed to help with sleep. like for most here, sleep is still a battle for me. Anyways, I found that sitting with my feet on the ground (cement actually - only rocks in the high desert where I live) for roughly 30 minutes twice a day helped my sleep. I've only started this recently, too soon to tell for sure.

You said that Ativan stopped helping you. I'm just wondering if your parents got you a grounding mat or sheet for your bed, it might help take the place of Ativan and calm down your system. And it might help in other ways too. It is soothing sitting with my feet on the cement. I used to take Ativan (lorazepam) for sleep but had to stop because it's addictive, developed a tolerance etc. So I did my cement experiment again today, and will see how sleep goes. But I'm seriously considering getting a grounding/earthing mat or sheet for my bed.

Take care -- we're here for you --

 

[vision blue]

@Belbyr Hope you feel a tiny bit better today. And even if not, it's not as bad as you think if you need a pic line for nutrition for a couple months til the throat settles down. You won't be an invalid like you think from that.
View it from your parent's point of view- they do NOT view you as a burden. From their point of view, the burden would be if you checked out.
I know you think when you read stuff like this that "You do not understand". But some of us have been there.
I need to find your whole story to see if i can be of any help. Will try clicking on your name and maybe that will point me to it.
Hope your suffering is less today
Hang in there!

 

[Sushi]

It was good to know you all. It made me feel less alone, but I am still overcome with the loneliness, sorrow, and fear. I'm just so tired. Thank you.

Belbyr, I am so sorry for your suffering. You have been going through so much! Reading your posts, though, it seems like you and your doctors are coming close to understanding underlying causes and this could well lead to treatment that will benefit you a lot. Please try to tough it out and hang in there. I know that when you are in the kind of pain and disability you are experiencing that this is a lot to ask....yet you seem so close to some answers. Yes, you must be so very tired, but you are not alone. Please hang on to the thread of hope.

 

[Zebra]

@Belbry,

I am so saddened and dismayed by your latest post, but I am so glad you reached out to us via PR.

I hope (and pray) that we will hear from you again as soon as you are able.

I have been following your thread since March, and I HONESTLY believe you and your team of doctors are getting quite close to a diagnosis, which will finally provide you with a prognosis and treatment options.

I know this year has been absolutely BRUTAL for you, and it sounds like just when you didn't think you could feel any worse, you hit a new low. I am so sorry.

On a practical note, I am hoping that perhaps your parents are frightened enough to take you to the ER and raise enough hell to get you admitted for a few days.

My mother and sister did this for me when I could no longer swallow food or water and the pain in my chest and abdomen was so severe I couldn't even sit in a chair and I could not speak without gasping for air.

While being admitted to the hospital was scary for me, it helped get me stabilized.

*I received much needed IV fluids
*I was fed thru a temporary nasal gastric tube to completely bypass my esophagus, which was in near constant spasm
*I received a low dose of morphine every few hours, and boy did I underestimate the value of pain relief
*Later I was given a trial of a drug called Reglan (to promote GI contractions) and instructed to follow a pureed food diet when I got home
*I also had chest CT of lungs to screen for aspiration pneumonia

Did my hospital stay fix me? Not even close, but as we can't survive very long without food or water, I am not so subtly advocating for immediate medical intervention.

Please know that many of us care about you, and would love to hear from you when you are able.

Zebra

 

[sue1234]

Have you been to the Mayo Clinic in Rochester, MN? I can't remember if I've read that somewhere or not. If not, it might be worth a shot to go to them. Technically, they are supposed to look at the whole picture and figure it out. I've seen some good stories, and I've seen some not so good stories. Since you are complicated, may be worth a shot.

 

[maybe some day]

I dont have much to add, since these are really supportive posts. But since reading your last update a few days ago, I do think of you daily, and sincerely hope things turn for the bettter

 

[Kes]

@Belbyr I'm really sorry that you are going through such a horrific nightmare. I've not experienced what your going through but I've read a fair bit of what you've been posting here and I urge you like the other guys who have posted to try to hang in there. Try not to look ahead, just take it moment by moment. It's the looking ahead that makes things worse because you need all your resources to just keep keeping on moment by moment.

You may be really close to getting some answers as others have said. When you're in such a state we're not good at making decisions. Everything gets distorted. Try to hang in there. I really hope things start to pick up for you soon. You've been through an unbelievable amount and you're still here. Sorry if this sounds lame but I saw Rocky Balboa recently in short bursts over a few days. I was just thinking of a line in it, "It's not how hard you can hit. It's how hard you can get hit and still keep moving forward." Well you've already shown unbelievable strength and determination to keep going so long with so much pain and so many problems. You need others to give you hope when your hope is feeling crushed. Moment by moment try to keep on keeping on. I hope and pray there will be some help for you soon.

 

[BeADocToGoTo1]

Just thinking of you @Belbyr.

 

[Gingergrrl]

Just thinking of you @Belbyr.

Likewise and I am hoping you will let us know how you are doing @Belbyr when you can.

 

[Belbyr]

I'm still holding on. I feel like I'm in the Navy Seals 'hell week' just longer. I'm averaging about 3 hours of sleep per night due to pain.

I just got another blood test back (my GP ran it) that shows my phosphorus (which has never been tested) is really high. Yet another sign of poor kidney function...

The nephrology clinic wants to see me tomorrow morning for more lab work. I think maybe they are about to start taking me more seriously instead of chalking up my elevated creatinine as nothing. Could this be autoimmune?

Also turns out I don't have a 1cm stone in my right kidney on CT but 5 stones ranging from 1-2mm each . Hoping my report comes back to show what my body is pumping out to create so many stones.

I got my new neurologist appointment moved up to later this week as well. I really hope he is good because I don't think there is anywhere else to go if he is a dud. Thats all I know for right now.

 

[Gingergrrl]

I'm still holding on. I feel like I'm in the Navy Seals 'hell week' just longer.

It is great to hear from you @Belbyr and perfect analogy with Navy Seals "hell week" (just a bit longer... ) ... Thank you for updating us.

The nephrology clinic wants to see me tomorrow morning for more lab work. I think maybe they are about to start taking me more seriously instead of chalking up my elevated creatinine as nothing. Could this be autoimmune?

I hope this appt went well and I think that it could definitely be autoimmune from everything that you have described. A lot of the tests that I did had results that were either cancer or autoimmune (and ultimately turned out to be autoimmune). Since you have thankfully ruled out cancer, it makes sense that it could be due to autoimmunity.

Also turns out I don't have a 1cm stone in my right kidney on CT but 5 stones ranging from 1-2mm each . Hoping my report comes back to show what my body is pumping out to create so many stones.

I hope they figure out what is causing all of those kidney stones!

I got my new neurologist appointment moved up to later this week as well. I really hope he is good because I don't think there is anywhere else to go if he is a dud. Thats all I know for right now.

Best wishes that this Neuro is one of the good ones and helps figure out this puzzle. Thanks again for keeping us posted

 

[Dakota15]

Hi @Belbyr, I just stumbled on this thread from last year and just wanted to reach out.

Are you still seeing Dr. Klimas (I assume the pandemic put things into a bind, but wanted to ask)? Have you experienced any improvement?