How Can I find AntiViral Doctor (Non Holistic) CFS Expert

[AverageJoe00]

I see posts about Co-Cure site but that's for holistic docs and there is only 1 near by.  I've been diagnosed for 3 years now.  I get frustrated and want to scream (nicely) at docs who say cognitive therapy and graded exercise.  

      If you had breast cancer or lung cancer and the doctor says our suggestion is take this for the pain and our suggestion is life style changes, cognitive therapy and 5 minute walks... you know the doctor was saying... "There's nothing we can do".   So why do doctors seem to think they've provided you with a plan when they say these things for Chronic Fatigue Patients.  It just frustrates me.  They sit there like they've treated you and mean while I keep telling my doctor all the meds he's giving BARELY get me through the day. I'm on the same things people list here.

   I've asked him and several auto immune specialists about treating CFS with AntiVirals because I read the Standford Studies.  I get the response 'there is no evidence it will work'.   Why not try...I see no end in site.  I see NO END IN SITE.    I don't want to take 20 different herbal supplements that really don't do much. I'm sure there are plenty of people that believe in holistic medicine on this board. I don't want to offend you but I often read people stating something has helped them, then 2 weeks later they are posting what a bad day they are having.  Some (some) herbs may do some good but I really don't want to delve into this area.  I want to focus on clinical answers. I used to run 3 hours a day. I did plenty of exercise.  Now walking up the steps is exhausting.   My primary doctor is nice/helpful but like the medical community says.. he says there is no cure.   Other docs I've seen have been anything from a waste of time to insulting because they belittle me.  I had 1 doctor tell me I just need to get up and exercise and be more social. He never listened to me. I told him I was at the gym 6 days a week before this all hit me. He said 'well you need to be there 7 days'.  You can tell when some people just don't want to listen and help.

So my question is 'How do I find a doctor who prescribes Anti Virals or is more assertive or knowledgeable on treating CFS.  I don't want to do the Chronic Fatigue Clinics and their SHIN treatments. I want to find someone who's at the forefront.   I'm in the Mid Atlantic Area (North East States).   I thought about using consumer reports for a doctor or the angieslist but I don't know if you can do any searching by CFS.  None of the doctor rating sites that are open to the public are really that helpful.  Calling my insurance company wasn't helpful.  My doctor wasn't helpful in referring me to someone more knowledgeable.   So....where do I go from HERE....  I know some people say they haven't been successful with AntiViral treatments.  I wonder if the people that HAVE been successful just never come back to bulletin boards.  They are health now...they have moved on.   So you only hear from the ones who weren't helped.   I'm at a lost.

Please no responses with herbal suggestions...thanks

[littlefilly]

Call the CFS support groups.  The Boston one is very helpful and gives names of doctors.  They are the best resource.  I am having the same problem in MN.  I have to fly somewhere else.  Let me know if you find someone.  take care, Nan

[jon799]

Hi Jelly
How did your psoriatic arthritis detected?
Rheumatologists?
Jon

[jon799]

Hi
What kind of doctor can detect defieciencies in growth hormones?
endocrinologists?
How can they determine if your are deficient?
What tests?
Thanks

[gymdandee]

One of the most common hormone deficiencies that can cause or exacerbate fibromyalgia is growth hormone.Growth hormone is secreted from the pituitary gland. Like all hormones, growth hormone levels peak at a young age and decline as we get older. Growth hormone is one of the master hormones of the body. It can control the release and
balance of the other endocrine glands
Growth hormone can be given only by injection. It is a bioidentical hormone. There are supplements which are reported to stimulate the release of growth hormone.
those supplements has been mixed at best. They are expensive and do not work nearly as well as the real thing: growth hormone.
Growth hormone therapy can be miraculous. more than 80 percent of patients who try
human growth hormone have a positive experience with it.  From what I read more than 17 years of using low-dose human growth hormone has shown very little adverse effects associated with its use.

[jon799]

hi jelly,
how was your psoriatic atritis detected?
i think i may have the same experience.
thanks

[jellylegs]

Totally agree with you there although I really think we are/were victims of neglect, indifference or whatever you want to call it. I live in Ireland and I was told I had chronic fatigue initially I asked my GP if there was a clinic or specialist that I could find treatment or help at(was willing to pay) anywhere in the country and guess what! Not one in acountry of over 4 million not one medic has opted to specialise in chronic fatigue. That soon spelt it out for me and I decided I would pursue a real reason for my misery and I got diagnosed eventually with psoriatic arthritis at my own expense not before damage was done of course. Medicine as far as I can see is gone to hell these days, if something doesnt fit in a box or fall outside a range of normal values then you are destined to the trash can or treated as if it is your own fault. My life changed in a few weeks from being a happy healthy fit non drinker non smoker with my own business to the miserable git I am today with nothing to live for and it could have been so different if I had met a doctor in time who mabey admitted that he didnt know what was wrong but did care enough to try and help but there's not much chance of that nowadays.

[terri540]

"I get frustrated and want to scream (nicely) at docs who say cognitive
Mental status tests
therapy and graded exercise.

If you had breast cancer or lung cancer and the doctor says our suggestion is take this for the pain and our suggestion is life style changes, cognitive
Mental status tests
therapy and 5 minute walks... you know the doctor was saying... "There's nothing we can do".   So why do doctors seem to think they've provided you with a plan when they say these things for Chronic Fatigue Patients.  It just frustrates me.  They sit there like they've treated you and mean while I keep telling my doctor all the meds he's giving BARELY get me through the day. I'm on the same things people list here."

Same here, A lot of these morons and quackes that call themselves doctors need a severe attitude adjustment.  I'm so tired of hearing "take your antidepressants and keep moving"  
As far as I'm concerned that would be just as asinine as telling a soldier that had his legs blown off, that he needs to start running matrathons to feel better.
In my case doctors simply dismiss the joint swelling as well as many other real physical symptoms that you can see.  I know not why.  It's almost like they know more that they are telling about these disorders and simply put people off so that they will eventually give up and live their life in misery or die.  Given some of the comments I've heard from docs I wonder if its a big coverup of some sort.  Maybe certain people are effected by some element or poison in food that now comes from all over the world or genetically modified foods, etc and they are trying to keep it quiet.
I know that probably sounds crazy but why else would these rheumatologists and other doctors say the things they do?  It's just not logical.
I had one doctor tell me that I was "looking for something that wasn't there"
I didn't really do or say anything but get into a heated argument with this doc.  If I had been 18 years old I would have knocked all the MF's teeth out.
I'm a 34 yo man with what I feel will be terminal medical issues.  I don't know if the man has some sort of death wish or what but as far as I'm concerned you dont say something like that to someone like me unless you are ready to get your *** kicked.

For doctors like this it should be mandatory that they be infected with whatever this stuff really is when it is eventually "diagnosed".  Then they should be put in some sort of solitary confinment with no access to medical care.  When they complain about severe pain, insomnia, etc......  Sorry sir there is nothing wrong with you.
I know some reading this will think I'm some sort of nut but that's not the case.  It's just the normal thought process when you are essentially denied medical care.
It's not right, it's not fair, it's not moral.
If doctors can not figure this stuff out then we as patients need access to experimental treatments as we see fit and the pain medications to try to get us through the day.

I didn't really help amswer your question, but I'm having a bad day and couldn't help but vent a little after reading your post.

[jellylegs]

Well I am with you on the herbal remedies for the most part, they wont cure anything but then I dont even believe there is a condition called chronic fatigue. To me it's a symptom of an undiagnosed condition that doctors are just too lazy to find out. I was told I had chronic fatigue after a bout of atypical pneumonia 3 years ago that I just never recovered from. It was a long difficult, expensive and depressing 2 and half years later when I got my real diagnosis! Psoriatic arthritis is what got set in motion by the infection initially but docs do not listen to what their patients tell them and if they had in my case looked into my history there might have been clues but no the only thing they look at nowadays is bloodtests and if they are normal  you are going to get the gentle exercise and anti depressant treatment treatment with no regard for the chaos your suffering has impacted on your life. So I would advise you to stop wasting money on herbal "cures" and get tough with doctors who dont want to look into your symptoms properly. There is a reason for everything that we feel. I live in a country with a socialised healthcare system but I had to still go private in order to get a diagnosis and am doing better with REAL treatment. So much for herbal crap, they just prey on people like us.

[inga511]

Have you checked out any of the Lyme disease experts in your area? A lot of times they will run the same tests as an infectious disease Doc, and give you better answers which seems to be what you are looking for. I wouldn't stop looking, I definately think it's viral, I have had FM for seven years.