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jeffrow
@jeffrow

Posts: 8
Joined: Dec 01, 2017

Need to find out what's wrong with me

Posted by @jeffrow, Dec 1, 2017

To whom it may concern,

My name is Jeff, I am a 38 year old male, and I have the life style and general well being of what would be expected of a 90 year old man in poor health. I’ve been seeing doctors here in Orlando, and getting test after test, and panel after panel of blood work, and no one can seem to come up with an answer, other than the fact that I have been exposed to the Ebstine Barr virus in the past. I’ve also had IBS and CFS thrown into the diagnosis, and the classic depression diagnosis as well. But it’s a cop out, they don’t have an answer, and yes I do have some depression but I think after years of feeling terrible and spending thousands on Doctor visits and procedures and testing anyone would be a little depressed.

Sorry I’m ranting :0)

Here’s the deal…

About 10 years ago this all started with chronic sinus infections when I moved back to Florida from New Mexico. I had a constant sinus infection from 2007 till 2011 and saw many different doctors and specialist. I had septum surgery and remained on antibiotics and steroids for most of that 5 year period, I was never off these medications for more than 2 weeks max. Finally, I self diagnosed a fungal infection that I read about that people can get in their sinuses and took a brief round of Diflucan. That was the silver bullet for that issue, but during that time period I developed incredible fatigue and weight loss, I thought I was going to die. But, I figured it was due to the over use of antibiotics, so since 2011 I’ve being countering with probiotics and a pretty substantial amount of vitamin supplements. I wouldn’t call it “Megadosing” but quit a bit, I take a multi, extra 1000mg of C and a Zinc/Magnesium/Calcium. I also take a half of a Zyrtec once in the morning and once in the evening.

Also, this might be significant. I was prescribed an awful drug called Effexor XR back in the late 90’s for anxiety. I thought the side effects (which are substantial) might be contributing to my condition with the sinus infections so a began to wean off about 2009 and was off completely by 2013. Again, this is a terrible medication with horrendous side effects, especially when getting off, so the fact that I was on this stuff for so long might be an important factor. I do also take St. Johns Wart now because I was having severe panic attacks while coming off of the Effexor.

So anyway, I did marginally better from about 2013 till about a couple years ago. I didn’t feel great, but I was for the most part functional and felt like I was managing my symptoms and felt optimistic that I was on the mend. But, as I mentioned I started having panic attacks a few years ago, sever ones that put me in the hospital twice. My blood went cold, my hands and feet went freezing and then went numb, I’d have a resting heart rate of about 220. these were terrifying, and they happened constantly though out the day. I was also having indigestion, so I had an endoscopy and it revealed that I had a bleeding ulcer, which the doctor thought might be contributing to the panic attacks. So, now I’m managing my symptoms with Colonzopan, not much now, I was taking a lot but the panic attacks have subsided drasticlly so I’m taking about .5 ml a day, mostly at night to help me sleep, and pantoprazole for the stomach, which I’m trying to get off, I’ve been on it for over a year.

Ok, so that’s the last 2 years or so, this is where I’m at as of today. Every night my heart races at bed time which is when I take the Colonzopan. I’m constantly bloated and belching, even with the Colonzopan I never get a full night sleep, averaging about 4 hours. I’m up and down with all kinds of strange sensations, trouble breathing, hot/cold, stomach pains and nausea, panic attacks, racing heart, and other things that I can’t even really describe. I urinate constantly, like every half hour. I’ve stopped sweating all together, no matter how hot I am, even though I’m usually not, I’m usually freezing cold, but my skin feels really hot. If you feel where I was laying down on the bed after I get up it’s like there was a heating pad there. I’m obviously exhausted all day, I feel like I’m going to throw up and I feel like I’m going to collapse at any moment, I’m dizzy, my eye’s are beat red all day. It’s amazing I haven’t been fired because they probably think I’m smoking weed. My left front side hurts constantly, right about at the bottom of my rib cage. My stomach constantly hurts and I can basically only eat oatmeal, even that gives me uncontrollable loud belching. I usually feel the worst in the mornings and evenings, after lunch I usually feel a little better, but still not well, I just don’t feel like I’m going to pass out in the afternoon, usually. I have my not as bad days and my worse days.

Anyway, I’ve scoured the internet and asked all my various doctors and specialists about every possibility and know one seems to have any answers. I don’t know if anyone will actually read this, I know there’s a lot of these sorts of dialogue’s on the internet and I sure didn’t get anywhere by asking for help from Dr. Hyman. But if someone does read this, any help, guidance, or recommendations would be greatly appreciated. I don’t know what else to do.

REPLY

Hi Jeff (@jeffrow), welcome to Connect. I’m glad you found us and I’m hoping one of our members will be able to offer some suggestions for you or share their experience with their similar health problems. You certainly have a lot on your plate. Some days I can relate about feeling like a 90 year old but then at 74 I’m a lot closer than you are. You are doing a good thing here by asking questions and learning as much as you can.

I’m tagging other Connect members that may be able to provide you with more information. @JustinMcClanahan, @kdubois, @kanaazpereira, @lisalucier, @colleenyoung are you able to offer any suggestions for @jeffrow?

If it is a possibility to make an appointment at Mayo Clinic, they are extremely good a diagnosing hard to diagnose health issues. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

The following TED talk by TED Fellow Jennifer Brea may be helpful:
“What happens when you have a disease doctors can’t diagnose” – TED talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Hoping you find some answers soon.

John

@jeffrow I just read your post and I’m sorry to hear what you’re going through. I can relate to the description you gave of your panic attacks with heart rate of 220 and icy hands and also for me, my neck. I had those feelings when I was titrating onto Celexa. I’ve also had panic attacks throughout my life since I was 27 yrs old. However, after being on the Celexa, I stopped having panic attacks. I’ve also lost many of the fears I used to have. I’m finally, at 69 years old enjoying flying and zip lining and other fun things.

I recommend that if you can get to a Mayo Clinic with a referral from your doctor, do so as soon as you can. If your doctor won’t refer you, ask one of the counselors on this site to help you get an appointment. I have used the site in Rochester, MN a few times and my husband was there with a heart attack. They are so excellent and thorough I feel certain they will find a diagnosis and treatment for you. Best wishes and welcome to the Mayo Connect community. GailB

@johnbishop

Hi Jeff (@jeffrow), welcome to Connect. I’m glad you found us and I’m hoping one of our members will be able to offer some suggestions for you or share their experience with their similar health problems. You certainly have a lot on your plate. Some days I can relate about feeling like a 90 year old but then at 74 I’m a lot closer than you are. You are doing a good thing here by asking questions and learning as much as you can.

I’m tagging other Connect members that may be able to provide you with more information. @JustinMcClanahan, @kdubois, @kanaazpereira, @lisalucier, @colleenyoung are you able to offer any suggestions for @jeffrow?

If it is a possibility to make an appointment at Mayo Clinic, they are extremely good a diagnosing hard to diagnose health issues. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

The following TED talk by TED Fellow Jennifer Brea may be helpful:
“What happens when you have a disease doctors can’t diagnose” – TED talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Hoping you find some answers soon.

John

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Thanks so much John. I appreciate the resources. I have a couple more appointments here, but if they don’t lead to improvement In planning to come to the Mayo Clinic in Jacksonville. Thank you again, and happy holidays!

@gailb

@jeffrow I just read your post and I’m sorry to hear what you’re going through. I can relate to the description you gave of your panic attacks with heart rate of 220 and icy hands and also for me, my neck. I had those feelings when I was titrating onto Celexa. I’ve also had panic attacks throughout my life since I was 27 yrs old. However, after being on the Celexa, I stopped having panic attacks. I’ve also lost many of the fears I used to have. I’m finally, at 69 years old enjoying flying and zip lining and other fun things.

I recommend that if you can get to a Mayo Clinic with a referral from your doctor, do so as soon as you can. If your doctor won’t refer you, ask one of the counselors on this site to help you get an appointment. I have used the site in Rochester, MN a few times and my husband was there with a heart attack. They are so excellent and thorough I feel certain they will find a diagnosis and treatment for you. Best wishes and welcome to the Mayo Connect community. GailB

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Thanks so much for your feedback. After what I’ve gone through with effexor In very reluctant to get involved with another SSSRI. Although, if that what fixes how I feel id be open to anything. Im planning to get up to the Jacksonville location after the 1st of the year. Thank you again for your feedback and concern. Happy holidays!

Thanks for tagging me, John.
Hi Jeff, I’m glad you’ve gotten some useful feedback from Gail and John, and encouragement to pursue seeking an appointment from Mayo Clinic Jacksonville. You may wish to read some of the discussions in group called Visiting Mayo Clinic http://mayocl.in/2ACsk5Y. People who have been to Mayo Clinic offer thoughts about preparing for your first visit and schedule appointments when you might have to visit different departments if the diagnosis is unknown.

I’m also bringing in @vdouglas and @thankful to this discussion. They both have experience with multiple conditions related to digestive and cardiac issues, and have experienced panic attacks.

@colleenyoung

Thanks for tagging me, John.
Hi Jeff, I’m glad you’ve gotten some useful feedback from Gail and John, and encouragement to pursue seeking an appointment from Mayo Clinic Jacksonville. You may wish to read some of the discussions in group called Visiting Mayo Clinic http://mayocl.in/2ACsk5Y. People who have been to Mayo Clinic offer thoughts about preparing for your first visit and schedule appointments when you might have to visit different departments if the diagnosis is unknown.

I’m also bringing in @vdouglas and @thankful to this discussion. They both have experience with multiple conditions related to digestive and cardiac issues, and have experienced panic attacks.

Jump to this post

I’m very grateful for all this engagement and concern. I wasn’t expecting anyone to actually read my post. I’m very appreciative and feel much more optimistic that this might actually get resolved. Thank you and happy holidays.

Dear Jeff, my heart aches for you. Have you ever seen a functional practice physician? Your insurance will not pay, and it will cost quite a bit, but it seems like you’ve invested so much already and sacrificed an enormous amount of time and angst not to mention pain both physical and mental.
Do some research on the internet. It’s worth your time. You may have another path to travel yet.
Good luck and God bless.

@colleenyoung

Thanks for tagging me, John.
Hi Jeff, I’m glad you’ve gotten some useful feedback from Gail and John, and encouragement to pursue seeking an appointment from Mayo Clinic Jacksonville. You may wish to read some of the discussions in group called Visiting Mayo Clinic http://mayocl.in/2ACsk5Y. People who have been to Mayo Clinic offer thoughts about preparing for your first visit and schedule appointments when you might have to visit different departments if the diagnosis is unknown.

I’m also bringing in @vdouglas and @thankful to this discussion. They both have experience with multiple conditions related to digestive and cardiac issues, and have experienced panic attacks.

Jump to this post

dear jeff may i please add my small contribution to help you and let you know that there is another person to add on to the others who have responded to you and want you to know that you are not alone. we are here for you. do not feel that you are alone in this. . there are so many, many ailments and even the doctors cannot keep up with all of them especially when a patient has a number of them. it can be just as confusing to the doctors as to the patient. i can relate to you panic attacks as i to have them. they are quite frightening. some how keep believing in yourself. it works. we are here. peach barbara

@colleenyoung

Thanks for tagging me, John.
Hi Jeff, I’m glad you’ve gotten some useful feedback from Gail and John, and encouragement to pursue seeking an appointment from Mayo Clinic Jacksonville. You may wish to read some of the discussions in group called Visiting Mayo Clinic http://mayocl.in/2ACsk5Y. People who have been to Mayo Clinic offer thoughts about preparing for your first visit and schedule appointments when you might have to visit different departments if the diagnosis is unknown.

I’m also bringing in @vdouglas and @thankful to this discussion. They both have experience with multiple conditions related to digestive and cardiac issues, and have experienced panic attacks.

Jump to this post

Thank you Barbara. I agree and I really appreciate your comforting words. Have a wonderful holiday season.

@thedinnymurph

Dear Jeff, my heart aches for you. Have you ever seen a functional practice physician? Your insurance will not pay, and it will cost quite a bit, but it seems like you’ve invested so much already and sacrificed an enormous amount of time and angst not to mention pain both physical and mental.
Do some research on the internet. It’s worth your time. You may have another path to travel yet.
Good luck and God bless.

Jump to this post

Good question. Unfortunately in that field, there’s a few reputable ones, and many charlatans, and you’re right the are expensive. There’s only a couple in my area that seem to be respectable and it’s over $600 just to set foot in the door. I can’t imagine how much I’ll end up spending after testing and procedures. I do believe health is imperative, but I’m hoping to find some answers conventionally for now, that may change though. Thanks for the suggestion, god bless you as well and happy holidays.

@johnbishop

Hi Jeff (@jeffrow), welcome to Connect. I’m glad you found us and I’m hoping one of our members will be able to offer some suggestions for you or share their experience with their similar health problems. You certainly have a lot on your plate. Some days I can relate about feeling like a 90 year old but then at 74 I’m a lot closer than you are. You are doing a good thing here by asking questions and learning as much as you can.

I’m tagging other Connect members that may be able to provide you with more information. @JustinMcClanahan, @kdubois, @kanaazpereira, @lisalucier, @colleenyoung are you able to offer any suggestions for @jeffrow?

If it is a possibility to make an appointment at Mayo Clinic, they are extremely good a diagnosing hard to diagnose health issues. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

The following TED talk by TED Fellow Jennifer Brea may be helpful:
“What happens when you have a disease doctors can’t diagnose” – TED talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Hoping you find some answers soon.

John

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I just watched the TED talk. Wow, she was almost telling my same story. I’m one of the semi functional cases she refered to. I can work at my office job, but spend the weekend in bed recovering. It’s also interesting that she brought up how infection like Ebstine Barr has been linked to this condition. I am going to contact the Jacksonville location and begin the process of setting up an appointment. Thanks again for your help.

@johnbishop

Hi Jeff (@jeffrow), welcome to Connect. I’m glad you found us and I’m hoping one of our members will be able to offer some suggestions for you or share their experience with their similar health problems. You certainly have a lot on your plate. Some days I can relate about feeling like a 90 year old but then at 74 I’m a lot closer than you are. You are doing a good thing here by asking questions and learning as much as you can.

I’m tagging other Connect members that may be able to provide you with more information. @JustinMcClanahan, @kdubois, @kanaazpereira, @lisalucier, @colleenyoung are you able to offer any suggestions for @jeffrow?

If it is a possibility to make an appointment at Mayo Clinic, they are extremely good a diagnosing hard to diagnose health issues. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

The following TED talk by TED Fellow Jennifer Brea may be helpful:
“What happens when you have a disease doctors can’t diagnose” – TED talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Hoping you find some answers soon.

John

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Hi Jeff (@jeffrow), glad you had a chance to watch the TED Talk video. It really is inspiring. If possible, we would love to hear how your appointment goes.

John

@jeffrow Hi, friend. I think I have written earlier, but I have been thinking about you, and need to pump out a little more for you and others. I can only speak from experience and what I have picked up from others. First, There is a company in the UK called “Bindings UK” which puts out many tests and assays for a rainbow of diseases. Any good lab, such as ARUP or Quant (MAYO) will have access to their work. Here is a list of some of their products which I picked up from their Brochure on Multiple Myeloma. (Get their material by Internet.):
• *SPEP = Serum Protein Electrophoresis. Multiple Myeloma (MM) Waldenstrom’s (WM) Smoldering MM *SMM) Primary LiteChain (AL) AL Deposit Disorder
• Serum IFE = Immunofixation Electrophoresis; AL, LCDD
• Serum FLC = Serum FreeLiteChain© AL, LCDD
• SPEP + Serum FLC= initial dX screen for MM, WM, SMM.
• Urine PEL/IFE = Protein Electrophoresis / Immunofixation Electrophoresis. © Bindings UK. AL, LCDD
I have also made reference to Bindings in my story, in pdf, at: https://bit.Ly/1w7j4j8 “Amyloidosis…..
I think everyone on this list should get the available materials from Mayo, AmyloidosisFoundation.org, Bindingssite.com, Alnylam.com and any other sites available. Frankly, one never knows what you might pick up, or from where. Just use your head, and push your doc to get started. All these are covered almost completely by Medicare., especially SPEP and sFLC and sIFE. One last suggestion, Make sure that you are on Plan F or G on Obamacare. The plans cost a little more, but they cover almost everything.

Thank you very much for including me on this information. I would have thanked you earlier but when I tried to reply shortly after you posted this the site was down, so I had to make a note to myself to circle back and thank you later. I have an appointment to see my GP this week and I’ll see if it’s possible to have these tests included in my panel, hopefully they will provide some insight.

Thanks again and happy holidays!

@johnbishop

Hi Jeff (@jeffrow), welcome to Connect. I’m glad you found us and I’m hoping one of our members will be able to offer some suggestions for you or share their experience with their similar health problems. You certainly have a lot on your plate. Some days I can relate about feeling like a 90 year old but then at 74 I’m a lot closer than you are. You are doing a good thing here by asking questions and learning as much as you can.

I’m tagging other Connect members that may be able to provide you with more information. @JustinMcClanahan, @kdubois, @kanaazpereira, @lisalucier, @colleenyoung are you able to offer any suggestions for @jeffrow?

If it is a possibility to make an appointment at Mayo Clinic, they are extremely good a diagnosing hard to diagnose health issues. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

The following TED talk by TED Fellow Jennifer Brea may be helpful:
“What happens when you have a disease doctors can’t diagnose” – TED talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Hoping you find some answers soon.

John

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Ask about Lyme. One of my co workers is on at least a year leave for EB and what is now Lyme and many co bacteria. Lyme is hard to identify. I hope the CDC recognizes it soon. Good luck. Your story sounds like my life and I am so close to disability.

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