I'm getting desperate

[sonnyp]

i'm pushing 60. my whole life i've been a bull physically. played 12 years of football, trained horses most of my life, hunted, fished etc.

i started sliding, physically, about 7 years ago. 1 knee, then the other. 1 shoulder then the other. oh well...i'm gettin old i thought. used over the counter, then vioxx, now celebrex. nothing helped.

last 2 years i went into a downward spiral. couldn't sleep started hurting all over....even my eyeballs (dry eye). started using a cane, can hardly do steps.

doctor treated me as though i had arthritis, but no rhumatoid in blood work.

did real extensive bloodwork about 2 weeks ago and i;m as normal as a guy my age can be except for 1 test. EBV (epstein barr virous) what ever the hell this is, reading should be < 100. mine's 2,985 ! i'm exhausted all the time. hard to get around.

now, the doctor's talkin fibromyalgea and chronic fatigue. he started me on an increasing dose of "savella". i think the cure may be worse than the problem. the side effects are going to kill me.

anybody out there familiar with this new drug or has anybody been through something like this ?

i appreciate any input.

[johnhannibalsmith]

I'm no expert, but I believe that Epstein Barr is essentially the same thing as mononucleosis, but that it can be a chronic issue rather than a "one-time" affliction as is the case with most bouts of mono.

I have a similar background to yours and some similar issues and have been reluctant to buy into the "catch-all" diagnosis of CFS or the like, but in your case, if the blood work showed levels that high, treating the symptoms of CFS could actually be quite helpful I would think.

Perhaps 46Zilllllly will lend a little help here soon in navigating through the chemical solutions - but I'm pretty sure that since EBV is seen as an immune issue that rest, recovery, and vitamin supplementation are usually highly recommended.

Good luck and don't take anything I say to the bank... I had a girlfriend that was in med school and got stuck quizzing her so I know just enough and much too little to be taken too seriously... :)

[boxcar]

i'm pushing 60. my whole life i've been a bull physically. played 12 years of football, trained horses most of my life, hunted, fished etc.

i started sliding, physically, about 7 years ago. 1 knee, then the other. 1 shoulder then the other. oh well...i'm gettin old i thought. used over the counter, then vioxx, now celebrex. nothing helped.

last 2 years i went into a downward spiral. couldn't sleep started hurting all over....even my eyeballs (dry eye). started using a cane, can hardly do steps.

doctor treated me as though i had arthritis, but no rhumatoid in blood work.

did real extensive bloodwork about 2 weeks ago and i;m as normal as a guy my age can be except for 1 test. EBV (epstein barr virous) what ever the hell this is, reading should be < 100. mine's 2,985 ! i'm exhausted all the time. hard to get around.

now, the doctor's talkin fibromyalgea and chronic fatigue. he started me on an increasing dose of "savella". i think the cure may be worse than the problem. the side effects are going to kill me.

anybody out there familiar with this new drug or has anybody been through something like this ?

i appreciate any input.

Very sorry to hear about the poor overall state of your health. It's no fun not feeling well. Have you considered alternative/natural approaches to try to get a better diagnosis? Feel free to email me if you're interested in exploring this avenue.

Boxcar

[JustRalph]

Don't leave out a chiropractor when chasing these things down.

From experience........ it helps.......but you have to stay with it at least 6 months

[boxcar]

Don't leave out a chiropractor when chasing these things down.

From experience........ it helps.......but you have to stay with it at least 6 months

With that advice, expect heat at any moment from ZilZil.

Boxcar

[sonnyp]

from my dealings with vets on horses, i realize at best, whether your consulting a doctor or just people with experience, there are NO absolutes.

i really, really appreciate any and all feedback.

thanks

[Tape Reader]

[QUOTE=sonnyp]i'm pushing 60. my whole life i've been a bull physically. played 12 years of football, trained horses most of my life, hunted, fished etc.

Chiropractor :ThmbUp:

I had very good results.

[Robert Goren]

Not to be a downer, but sometimes your health just turns bad for apparent reason. Follow your Doctor's advice or try a different Doctor if you think he might be wrong. The only thing you can do is deal with it as best you can and keep a stiff upper lip. I know, I have been there. Good luck and I hope you get better soon.

[Johnny V]

Very sorry to hear about the poor overall state of your health. It's no fun not feeling well. Have you considered alternative/natural approaches to try to get a better diagnosis? Feel free to email me if you're interested in exploring this avenue.

Boxcar
This may be something you may want to look into. You mentioned the side effects of the medications you are taking. If the approaches your doctor is recommending are not working and as you indicate may be making you worse, a less invasive more natural approach may help get your immune system and health back in balance. I wish you the best and hope you feel better soon.

[HUSKER55]

if you are hyperglacemic it can be very difficult for your body to get enough energy from the food you eat for your body to do anything.

consult an endocrnologist. it is a lonshot but heh,...they do come in.

sorry the hear about your health. good luck

[Grits]

Sonny, if your diagnosis was with your local primary physician, ask him/her to refer you to a major medical center. (If by chance they hesitate, you don't have to have a referral.) A large teaching hospital will have more experience, and will have seen a far greater number of patients with such a diagnosis as you have been given. Too, there may be several different doctors called in to consult on your condition, all having different treatment protocols that you can benefit from. Also, there may be clinical trials that could help you as well.

This didn't come quickly, and there may surely be other avenues beyond giving you one medication, and sending you home.

Hope you get the help you need, and feel much better soon.

g

[Dave Schwartz]

First, let me get this right. We cannot stop Zilly from posting, here is a guy that asks what Epstein-Barr is and he has no response?

It's Herpes. I was shocked when I tested positive about 25 years ago... until they told me that like 70% of people tested positive for this.


In the 1980s I was diagnosed with "chronic fatigue syndrome." Now, truth be told there was really only one diagnosis approach accepted by the AMA - You stand/lay against a near-vertical table for about 20-30 minutes and if your blood pressure suddenly drops you've got it.

Well, I never took the test but had what seemed to be all the OTHER symptoms - especially these long bouts of no energy. I mean they lasted for WEEKS! I worked in gaming then and called in sick at least once a week and sometimes twice.

Then I got the right doctor. She says, "I think you have allergies." I know this sounds crazy, but every six months I got a Kenalog shot and I never had the problem again. Then, about 10 years later, my doctor says, "No more Kenalog. Let's see what happens." I have never had another episode!


BTW, it is one of the main reasons why I went into business for myself. I just could not stand the idea of calling in sick all the time. I felt I needed to be able to keep my own hours.


Looking back on it, I am convinced that much of my problem was psychological, and it was reinforced by my doctor. I don't believe I ever had CFS. I think I had allergies - I STILL have allergies, but not as bad as when I was working in the gaming industry. I think it was the cigarette smoke in the casinos!


Sonny, is there any possibility of allergies? Could your house have mold? If you go on vacation to a place (say) by the ocean does it go away?

Anyway, I'd look for something like that.


Okay, so now Zilly can come in and offer some insight into early speed.
:lol:



Regards,
Dave Schwartz

[sonnyp]

dave,

thanks so much for your time and effort and to all the posters.

its the wee hours of the morning and soon im heading back to this doctor to try to get some relief from what i now think is a reaction to this savella medication i started a few days ago.

i never thought a person could get so messed up. this thing is all immune related but i rule nothing out. i can't sleep so i read on the internet.

allergies could very well be a source of this. i had no idea they could be so debilitating ! i was reading how bad people got who had no tolerance for gluten in their food. until the found out, they were crippled. i.m going to look into the allergy angle it makes sense.

[racko]

I did pretty much the same thing. I have been searching for the answer for 4 years. Stomach never settles down, eyes watery hard to see. They say it is an allery yet all tests aren negative. searching.... live is miserable and yes it is disabilitating

[46zilzal]

Don't leave out a chiropractor when chasing these things down.

From experience........ it helps.......but you have to stay with it at least 6 months
for an infection? Old Daniel David Palmer and son BJ continue to influence the uniformed with that malarkey about nervous energy and subluxations.

Want to know how old Daniel discovered his "science?" He straightened up a hunched over fellow named Lillard, heard a pop, and, without a clue as to where the 8th cranial nerve actually was, claimed he had "cured" him of deafness.....

D.D. Palmer's effort to find a single cause for all disease led him to say:

"A subluxated vertebra... is the cause of 95 percent of all diseases... The other five percent is caused by displaced joints other than those of the vertebral column."
Boy people are gullible when it comes to health choice.

Go to legitimate sources for health care information, as it is in your best interest.

http://www.cdc.gov/ncidod/diseases/ebv.htm


Since I work all weekend at the track I do not have a chance to look at what is posted for three days per week.

[46zilzal]

A hard and fast rule to remember: LAB TESTS only report what was going on at THAT MOMENT, and isolated, they have no value.

It is only over time that lab values, IN CONTEXT with other labs and symptoms, take on any prognostic value.

For example, most of the rheumatoid test all come along with what is called a titer, HOW many dilutions of the test material are required until that positive test turns negative? The amount of dilution it requires tells how strong a positive it was.

[46zilzal]

Another thing I always told my patients was to help me QUANTIFY symptoms and better describe things. Just don't say it hurts, tell me if it is sharp, dull, well localized, diffuse, lancinating, ...is it associated with color changes at the same area? etc etc..

I tell them the PQRST system

What are the Provocative or Palliative factors in the pain?
What is the QUALITY of the pain?
What is theREGION of the pain?
What is the Severity (on a 1 to 10 if ten is the worst you have ever felt)
What are the Temporal characteristics of the pain?

[46zilzal]

Third, if you have a feeling you are just being coddled with no definitive diagnosis in site, RUN, don't walk, away from that practitioner and try to get into a medical school clinic, where they have the latest technique and fresh eyes to look you over.

This is what I did with my late wife and she was made much more comfortable her last several years.

[sonnyp]

A hard and fast rule to remember: LAB TESTS only report what was going on at THAT MOMENT, and isolated, they have no value.

It is only over time that lab values, IN CONTEXT with other labs and symptoms, take on any prognostic value.

For example, most of the rheumatoid test all come along with what is called a titer, HOW many dilutions of the test material are required until that positive test turns negative? The amount of dilution it requires tells how strong a positive it was.


a value that s/b <100 for normal but shows up at 2895, is that a meaningful
flag and how would you expect ebv to manifest itself ?

[46zilzal]

a value that s/b <100 for normal but shows up at 2895, is that a meaningful
flag and how would you expect ebv to manifest itself ?
Follow the cdc reference in a previous post

[Grits]

Third, if you have a feeling you are just being coddled with no definitive diagnosis in site, RUN, don't walk, away from that practitioner and try to get into a medical school clinic, where they have the latest technique and fresh eyes to look you over.

This is what I did with my late wife and she was made much more comfortable her last several years.

This is what I told Sonny last night. It could be any university medical center, in any state. Here at home, its been Duke Medical Center for 33 years. And there are many others all over the country that could help Sonny. They see, and attend to so much more than one's local primary doc.

Again, I hope you get the help you need Sonny.

[Trotman]

Sonny P I have a pretty good idea what your going through
I went through a period where every bone in my body hurt.
Tired all the time this was around 60 my doctor rather than go extreme right away gave me a B-12 shot and then a steady program of time released B-12 and C&D along with CQ 10. Four years have passed and I feel great,no aches or pains, full of life. Good luck to you my friend.

[sonnyp]

thank you...thank you all for responding. the response shows me we all will go through physical problems. for me, god knows, i've been challenged mentally but i've never been up against it on the physical end.

i'm comfortable tonite. saw the doc and based on your responses, told him to forget the "designer " drugs and get back to basics.

i took a shot of kenalog and B-12 (both suggested here) and i'm feeling much relief for the first time in many, many months.

thanks again

[Grits]

Sonny, this is great to read!!!!

None of us handles pain; the relief, I'm sure is welcomed, finally.

Rest well.

[46zilzal]

i took a shot of kenalog and B-12 (both suggested here) and i'm feeling much relief for the first time in many, many months.

thanks again
That steroid is only going to cover the symptoms for awhile....NEVER let them give you more than three injections, spaced over at least 4-6 weeks on the side effects can start showing.

PERSONALLY, I always was fearful giving a steroid in an established infection.

[Robert Goren]

My doctor when I was a kid. If you came in with a flu like symptoms, He would give you shot of streptomycin and shot of calcium and B-12. When I learned a few years ago that I have to take B-12 shots because my body doesn't absorb it from food, I told my present day MD about that and he laughed. He said a lot of MD in the 50s gave B-12 shots. B-12 is an upper. It didn't really cure anything, but it made you feel like it did while the antibiotic did. If I were you I would want to know why he is giving you all that B-12. You should get plenty from almost any diet. I wish you well.

[jognlope]

I fight constant fatigue, but a good night's sleep, good food, sunshine and there and doing something your own helps so much I can't say. I make western show shirts with all the sequins and rhinestones and stuff. Something creative your own, that helps. I refuse to take medication because of the weight gain and the results are marginal. But that's your choice and it took me years of false starts then going back on them to finally get off them. I think people get overwhelmed with bad news, it's too much for any one person to carry. Take time for yourself!!

Ensure works wonders but that's just for me, if I don't take it, I get weak sometimes.

[jognlope]

You can drop your medication down to a lesser dose. Docs just prescribe the same dose to everyone. Like Lexapro, 10 mg, well that's too much for some people and they ended up reducing it to 5 and even 2.5 mg or alternate the latter.

[MONEY]

Along with you medication try some light exercise & some good music.
It works for me.

Schenectady Jazz Band
http://www.youtube.com/watch?v=TI51i-lK4Pc

money

[46zilzal]

You can drop your medication down to a lesser dose. Docs just prescribe the same dose to everyone. Like Lexapro, 10 mg, well that's too much for some people and they ended up reducing it to 5 and even 2.5 mg or alternate the latter.
The intelligent physician remembers the basics called the dose response curve and titrates patients to get the same pharmacological effect with the dose that best fits their physiology.


One starts with what is the minimim effective dose and then increases it over a period of time to get the best result SPECIFIC to the patient's response not the PDR "cook book" dose.

[jognlope]

There was something PBS about how the SSRIs repair neurotransmitters, so you can take them for awhile and then stop and be improved. That's nice news, because that means it's not a life time having to take them.

[46zilzal]

There was something PBS about how the SSRIs repair neurotransmitters, so you can take them for awhile and then stop and be improved. That's nice news, because that means it's not a life time having to take them.
Selective serotonin re-uptake inhibitors REPAIR anything? I would really be interested in that malarkey...It is all biochemical and there is feedback inhibition to any chemical we make in our bodies...it is called homeostasis.

maybe they mixed it up with this study http://www.nadh.com/site7/SYSact20.htm

[jognlope]

That's what they said. I guess they were saying even after the SSRI is discontinued, the neurotransmitters keep firing.

[46zilzal]

All of these drugs work on the same mechanism: MAKE the neurotransmitter chemicals stay around longer by selectively blocking re-uptake or block the monoamine oxidase enzyme that normally breaks all of them down.


The physical neurotransmitter is unchanged.

[jognlope]

They must have meant only while taking the drug ... most likely.

[johnhannibalsmith]

Selective serotonin re-uptake inhibitors REPAIR anything? I would really be interested in that malarkey...It is all biochemical and there is feedback inhibition to any chemical we make in our bodies...it is called homeostasis.

maybe they mixed it up with this study http://www.nadh.com/site7/SYSact20.htm

If you are actually interested in the theory:

http://mentalhealth.about.com/cs/psychopharmacology/a/neurogenesis.htm

[46zilzal]

If you are actually interested in the theory:

http://mentalhealth.about.com/cs/psychopharmacology/a/neurogenesis.htm
as I thought QUOTE: Other studies have shown that antidepressants can trigger neuron growth, termed neurogenesis, in the hippocampus; but the significance of this was unclear.

[johnhannibalsmith]

If you are actually interested in the theory:

http://mentalhealth.about.com/cs/psychopharmacology/a/neurogenesis.htm

I probably should have sought out a better link that deals a bit more directly with the specifics being discussed here... I remember reading a long piece on the subject and now that I read that little excerpt that I linked to, it doesn't really delve into the subject in quite the way I was hoping (expecting) it to.

[johnhannibalsmith]

as I thought QUOTE: Other studies have shown that antidepressants can trigger neuron growth, termed neurogenesis, in the hippocampus; but the significance of this was unclear.

I appreciate it when studies admit to being unclear... conclusions that are perceived as certainty make me skeptical...

I'm not endorsing the concept as legitimate or not, but it is interesting research.

[46zilzal]

CORRECT cells do increase.

http://biopsychiatry.com/newbraincell/index.html

The clinical benefit of drugs that increase serotonergic neurotransmission encouraged one of the authors (Jacobs) to test fluoxetine (Prozac), which increases brain levels of circulating serotonin by inhibiting it from being taken back into neurons that release it. We gave adult rats a three-week, systemic treatment of fluoxetine and found an approximately 70-percent increase in the number of cells produced in the dentate gyrus. Ronald Duman’s group at Yale University confirmed and extended that result. They found that fluoxetine, antidepressants acting preferentially on norepinephrine and chronic electroconvulsive shock all increased cell proliferation in a rat’s dentate gyrus.

In combination, the above studies demonstrate that serotonin can dramatically augment cell proliferation and that it does so, at least in part, by action at the 5-HT1A receptor. Consistent with this, the hippocampus--especially the dentate gyrus--has an extremely dense concentration of these receptors.

[jognlope]

So does this mean patients can d.c. an SSRI? Or just for a time?

[46zilzal]

So does this mean patients can d.c. an SSRI? Or just for a time?
I think twenty years hence, doctors will not believe they used these.....Withdrawal can be brutal with many suicide lawsuits out there against Paxal

[jognlope]

I know, brain zaps, you gotta wonder how great is a drug that gives you them evil brain zaps. I read a story about one woman who went through these for 6 months after dcing Paxil. It's all about money. I mean they work, I've seen it in friends, but also saw the weight gain. There is also something they do to the mind that makes it less able to do things like enjoy music, I guess what you'd call contemplative right side of brain things...

[46zilzal]

I have heard them called chemical lobotomies and one step above electroconvulsive shock therapy.

[jognlope]

All the ER reports I do, I bet 99% of the Ct scans come back negative, it's too much. Order for this, for that, for a headache, for nothing much.

[46zilzal]

All the ER reports I do, I bet 99% of the Ct scans come back negative, it's too much. Order for this, for that, for a headache, for nothing much.
THAT is a direct result of lawyers, UNTRAINED TO DO SO, practicing medicine and one of the many reasons I never practiced there.