Need to find out what's wrong with me

Posted by jeffrow @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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@casey1329

Jeff, I don't know what to say, other than I'm sorry that you are suffering so much and for so long. My 71 yr. old husband had a condition that I don't think is properly diagnosed. It started when he tried to get out of be and fell 8 months ago. He called it "Jello legs" and at one point needed a walker. The ER doctors said he had "Deep Vein Thrombosis" and discharged him. He did have DVT and it was treated. A month later he fell again. We spent 6 days in the hospital and again given the DVT diagnosis and in addition Parkinson's. The vascular doctor cleared up the DVT and a second opinion neurologist removed the Parkinson's diagnosis and gave us a new one CIDP. This requires regular antibody infusions. We're still not sure that he has CIDP. My husband had been a heavy drinker but recently gave it up. We used google to help us figure out what is going on and came up with the possibility that he could have "Alocholic Neuropathy". We saw another neurologist who isn't so sure but agreed to gradually withdraw the infusions in the belief that if he doesn't have CIPD the withdrawal shouldn't effect him. We don't have an answer but found googling helpful. I wish you all the best!

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@casey1329 I’m sorry that you’ve had to resort to google to try and figure out your health problems. Have you been to a large medical center or university hospital? You can call and say that your husband needs help. He’s been given several conflicting diagnoses to include recurring DVTs, questionable autoimmune diseases and/or Parkinson’s disease. And, he has frequent falls because his legs give out. I know you want some answers, but sometimes you need to go beyond community hospitals.
Do you think think this might be work a try?

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Thank you very much for your interest. We currently have a N.Y. Presbyterian Hospital-Columbia & Cornell
affiliated neurologist. This is the doctor that said the only way to tell if my husband has CIDP is to stop the infusions and see what happens. He has my husband going from every 4 weeks to every 6 weeks for the infusion. The plan is to keep increasing the time between treatments till they're eventually gone, provided that there are no problems.

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I’m going through something similar. First I was told to get off clonazepam which I take to sleep. .5 mg. Life became hell tapering off. I only take .25 now at bed. But I feel the same way. Heart issues. My body feels hot inside and the bed is actually hot and I move around all night looking for cold spots. Three years ago I played tennis 5 days a week now im lucky if I can walk my dog around the block without feeling like I am going to last out. I can’t catch my breath heart rate resting is 110-135.
I have seen over 30 drs.
Here are a few things I have done that have helped, I got this gene site gene test. It shows how you metabolize drugs. I found out that Ivan a rare ultra rapid metabolizer. This helps so if drs do prescribe meds you don’t have bad reactions. Why a Dr didn’t tell me about this years ago . Just crazy. Have you had your endocrine system tested?

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Sorry for the typos it’s late for me

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