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Old 06-14-2011, 11:34 AM   #1
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Can anyone relate?

Greetings,

Well, I have exhausted so many avenues that I don't know where to turn. I thought I would post my story here and see if any of you good people might have any suggestions.

I am a 45 year old male, 6' 2" and 185 pounds. Never smoked. Was a daily drinker (at least a beer or two) for many years, have now quit. My cholesterol is moderately high at 240-250 total, 180 LDL and 70 HDL. Have had hypertension for years but take medication for it and keep it below 140/90. My usual readings for a long time were 130/85 and these days 125/80. No family history of early diseases, however my father did have MS.

Around the end of last September (and I am not certain that this isn't just a coincidental happening) I came down with a virus of some kind that gave me the usual cough, etc. I also felt generally weak and tired. I might also mention that this bug gave me a run of PVCs that were constant. I woke up with them and I went to sleep with them. I am prone to getting them, but this was ridiculous. On day 3 or 4 of the virus, I had a fever of about 99.5 to 100.0 (high for me as I normally run 97.3-97.8 at home and 98.0 at the doctor's). During the fever the PVCs stopped, but my normal resting heart rate of 60 was a constant 95.

After the virus was over I felt very run down and could not work like I normaly do. Shortly therafter I started to notice that drinking alcohol gave me a somewhat unsettled feeling. I couldn't quite put my finger on it, but it just didn't agree with me.

In November I noticed that everytime I drank my shoulders hurt, like I had strained them. Then, gradually through that month I noticed that not only did my shoulders hurt after drinking, but my abdominal core in general started to ache much like the feeling of "stitches". After a while I just quit drinking. It wasn't worth it.

Also during November I experienced what was to be the first of 3 episodes of severe hypertensive spiking. I wound up in the ER twice, once with a reading of 180/120 and the other 190/130. My medication (Cozaar and HCTZ) was no longer controlling my BP.

I saw the cardio in November after the first episode and performed a stress echo. Walked for 12 and a half minutes total. Was told all looked fine.

I started losing weight (unplanned) in December and went from 204 down to 188. I retrospect I believe it was due to stopping the drinking coupled with a lack of appetite due to feeling poorly. Still, I had all the typical tests, scans etc. and nothing was found.

TSH is normal at 1.00

I have discovered on my own due to my obsessive BP monitoring, that I have orthostatic hypotension. Although at other times I have actually experienced orthostatic hypertension, that is, my BP has gone up to 150+ from 130 by merely standing up, though these episodes have been infrequent.

Current symtoms: Fatigue, intolerance to exercise. If I do any kind of mild work my pulse will easily go up to 120 and my BP will drop a little, sometimes only 5 points, other times 20 points. Major brain fog (which I actually have had for 6 years straight now). My stamina is gone. I still get the weird pain with alcohol so I don't drink anymore. I have a very sensitive stomach now and have to be careful what I eat or it will hurt and sometimes burn. I am seeing a gastro and he wants to do an endoscopy. I had one done a year ago for swallowing problems and it was clear, of course I was not symptomatic then.

After several months of having difficulty controlling my BP I tried several different meds. I started Benicar which is an ARB very similar to what I was taking (Cozaar) and my blood pressure went down quite suddenly. Now I am averaging 120/80. However, this too seems strange as an ARB is not a very potent BP med, and considering the problems I was having keeping my pressure down between November and March, it doesn't make any sense.

Any thoughts? I don't know what else to do.

Regards, Brenden.

 
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Old 06-14-2011, 09:14 PM   #2
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Re: Can anyone relate?

don't have time for a full reply right now, but I definitely suspect leaky gut syndrome...look it up, and also look up a diet to help it...the gut is a huge key to beat fatigue.

 
Old 06-15-2011, 09:57 AM   #3
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Re: Can anyone relate?

Greetings,

Will look into the LG syndrome. I don't know if I have ever been bitten by anything. I do work outside during the Summer and Fall as a housepainter, so it wouldn't surprise me if I have been bitten by something. The other day I was working in the garage with a friend throwing out some things, getting a mild to moderate work out. After a little while I just had to rest so I went to the kitchen and drank a glass of water, I felt winded so I took my BP staning up and had 110/76 with a pulse rate of 120. I sat down for a few minutes and my BP was 124/80 with a pulse of 75. As I say, I get orthostatic hypotension. I know there can be a myriad of causes for this, but I fear the doctors have missed something.

Regards, Brenden.

 
Old 06-15-2011, 08:09 PM   #4
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Re: Can anyone relate?

I spent the 600 bux for Ingenix testing and no Lyme for me...I was almost certain based on what I had read that I'd have it. But not for me but I am aware many w/ CFIDS find that out later. And vice versa...some w/ Lyme diag find out later it is really CFIDS

 
Old 06-16-2011, 01:23 PM   #5
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Re: Can anyone relate?

I believe there are others tests, but not positive...
You need to ask your Dr for a referral to a Rhumetologist. I've had Chronic Fatigue Syndrome since January 1999. I didn't know what it was until last year. I was diagnosed with Fibromyalgia shortly after. I'm in the process of getting tested for MS. I have also had Derealization & Depersonalization since shortly after the Fatigue hit. I've called it Brain Fog all these years & found out the real names just a few days ago. I also have Brain Fog which has gotten worst since last year. Never had Anxiety or any sort of Depression before this all hit. I do have Hypothyroidism & Back problems which hurts more since the Fibro kicked in.
They will need to do many, many tests so they can rule things out & give you any diagnosis. A Rhumetologist is a great Dr that can give you a diagnosis.
Have you had your vitamin D levels checked? If you are low on Vitamin D it give you many of the CFS & FM symptoms. You can start taking Vitamin D3 pills to see if it helps. When my daughter was low, she took a dose of 50,000 IU once per week for 8 weeks. I buy 5,000 IU pills for a maintenance dose... She takes about 15,000IU weekly. IT takes allot to overdose on it. Maybe you should do some reading on it...
Hope this helps I truly hope it's something simple like this. I wish mine were.... Wishing you the best
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 06-16-2011, 07:29 PM   #6
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Re: Can anyone relate?

Quote:
Originally Posted by jenj770 View Post
Lyme is diagnosed primarily by symptoms, not tests. Are you aware that a large percentage of people with lyme test negative? Antibodies may or may not be present during testing. If you have the symptoms you may very well have lyme. Seeing an LLMD (lyme literate medical doctor) would help to confirm. Visit the lyme board here for more information.
I am aware of this and that is why I tested twice with my regular doctor, then spent the money for the BEST test available which is actually a "battery" of tests from Igenix. Based on what others have said about the accuracy of the Igenix tests, I have taken Lyme off my list. But I do appreciate you pointing out some important things for others who might not be aware.

 
Old 06-16-2011, 07:34 PM   #7
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Re: Can anyone relate?

Quote:
Originally Posted by jenj770 View Post
Lyme is diagnosed primarily by symptoms, not tests. Are you aware that a large percentage of people with lyme test negative? Antibodies may or may not be present during testing. If you have the symptoms you may very well have lyme. Seeing an LLMD (lyme literate medical doctor) would help to confirm. Visit the lyme board here for more information.
I find this interesting... My mom keeps thinking I have Lyme, but I don't have all the symptoms. I think I have just a few of them...
Does everyone with Lyme have all the symptoms?
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 06-17-2011, 09:02 AM   #8
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Re: Can anyone relate?

Quote:
Originally Posted by jenj770 View Post
Hi Tori,

Everyone presents differently so you do not need to have the whole slew of symptoms associated with Lyme. Also, you can have some symptoms at one time and months later others. Tests are not conclusive, even with Igenex, so lyme docs go primarily by symptomology, not tests.

As I've already stated, if you should test negative, even by many tests, this is not an indication that you may not have Lyme. Visit the lyme board here and you will see how many people, even in a chronic stage, who have never tested positive but are bonafide lymies.

If you suspect you may have LD the best thing to do is see a qualified lyme doctor, called an LLMD - lyme literate medical doctor. No other type doctor is qualified to test, diagnose or treat lyme disease.

Wish you the best,

Jen
Thanks for the info! I'm going to check into it.
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 06-18-2011, 11:01 AM   #9
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Re: Can anyone relate?

Hi Brenden,
Sorry to hear your having so many problems. I posted a thread "things that have helped my cfs", I think there are some things in there that will help you. I posted it pretty fast to try and help people with this because I know how much they suffer from it being I have it. The magnesium was hugh for me and Bio-Strath. The bio-strath achually helped clear my brain fog. I don't know if the timing was right for it to work for me or what but it worked. I also take d-ribose. When I would get stressed I wasn't hungry and didn't eat and I would get worse. Eating helped me maintain my enegy level. After I would come out of a relapse after a couple days I would always have to eat more to try and build my energy level back up. I noticed if my nose was plugged up even a little I always felt worse. Once I got it unplugged I instintly would fell much better. Getting as much oxygen in me is hugh. I try to keep my nasel passages open as much as possible. I never really got depressed, but my anxiety is high. I could never understand why. Then it occured to me that cfs for me was debilitating. It's more then just being tired, when I tried to do something there was no energy to beable to do it. Before cfs if I was tired I still had some energy left in the tank to keep going. Now I try there's nothing there. Also with cfs I could instintly being exhausted, so my anxiety would always be high if I was doing something not knowing if I could finish it. From a year even 3 months ago I've improve dramatically. I hope something helps you here,
wigs.

 
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