After taking an antiviral therapy for 6 mos I am now ME/CFS

I hope Gary will recover enought to play again.  What kinds of treatments are there out there?  All I get are run arounds and none of my doctors agree on anything among one another.  I can't even find a doctor who will read the print outs I bring to them.  I have this one pain management doctor who said flat out:  YOU have physical ailments and you have to taker what I prescribe and stop reading those phony sites.  I know I have physical problems as well but this is total body.  I feel like I am wrapped in a coccoon tightly-despair sets in.  I can deal with a hurting back-it is the dreadful fatigue-so tired can't life arms up sometimes.  Laying still I think -okay I will go out on the lake or work in the garden and by the time I have my shoes on I say to heck with it and crawl back in bed!

 

Yes, we can totally relate to all of this.  Garry used to be so weak of course, that he was totally bedridden etc. but after being that way for over a decade, and even after getting to where he could spend some time on the couch instead of bed constantly, we had moved to a different county a little further east (in Arizona) and so we had to find a new doctor that would accept Garry's insurance (Medicare).  So this new doctor we found was really nice and caring (even though he, like most doctors didn't really know hardly anything about CFS or Fibromyalgia) but he was able to discover that Garry was extremely low in testosterone.  It was around 150, and the doctor was amazed, and said "I've never seen such low testosterone levels!"  Then he said that the working testosterone was only 2.  I guess the normal range for the working testosterone is at least 8-10, and the total testosterone should be at least 300 - 1000.  So he started out with the testosterone gels, which didn't seem to help at all.  So the doctor suggested a fairly new procedure for testosterone replacement called Testopel.  They are little pellets that are implanted into the hip area that are time released, and are released into the system slowly and as needed.  Years earlier Garry had tried the testosterone injections, which caused him all kinds of problems because it (the energy levels) came in sperts and was totally unpredictable.  And then of course when it wasn't peeking, he would still be as weak and unable to get out of bed as he was before.  The little bit of energy it did give him (the injections, that is) only lasted for a short time and wasn't barely enough for him to even leave the house & go out to eat.  So anyway, these implants called Testopel actually helped him and made quite a difference.  It was just a matter of figuring out how many he should get implanted at once. He started out with six because that's all that Medicare would allow.  And although six wasn't nearly enough, we did see a difference.  Before the implants, he could barely even speak he was so weak and out of it.  He also could barely even think.  He had been unable to take a shower for over 20 years, and had to be bathed in the tub (which was also extremely difficult for him. but not impossible).  He was doing good just to get dressed with my help and make it out to the car to let me drive him to his doctor's appointments.  Many times we had to cancel his appointments due to his severe weakness and inability to function.  But after starting the Testopel treatments, it was like he was a new person.  He was actually able to stand up long enough for a shower.  He was able to think more clearly, and talk much better without forgetting every other word!  He was able to sit up in a chair for short periods instead of always having to lay down.  He was able to start walking around the house without my assistance.  It was an unbelievable change.  He was still very weak and sick, but had improved and could actually do these things for the first time in over 20 years!!  Then as time went on, we increased the amount of pellets because his testosterone was still too low.  We are now up to 14 pellets every three months, and although Garry is still very sick and pretty weak, at least he can function somewhat and do things he hasn't been able to do in decades.  It's unbelievable and very exciting to see him getting around the house without my help, and seeing how much more alert he is etc.  If you don't mind me asking, how low are your testosterone levels?  This might be exactly what you need!  Oh, I forgot to mention, that since going on the Testopel, Garrys severe congestive heart failure and heart problems that he had have also improved greatly, because the energy levels have increased enough for his heart to start working properly again.  He nearly died from severe cardiomyopathy, and the doctors didn't expect him to even live.  The heart could barely even pump anymore, and he was at death's door, but the heart miraculously improved and he lived!  Then later on, the heart started to act up again, and that was about the time he started the Testospel, which helped his heart failure to improve.  If you would rather use my email so you can write to me personally, rather than everyone on this forum, feel free to do so.  We still have a lot more to talk about.  Talk to you later.

Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

Thank you Sandy.  No.  Suicide is really not an option.  In the back of my mind I think it is an option but I have children and grandchildren after all and they need me.  My wife passed away 15 years ago next month.  My only child would never forgive me.  She lost a mother when she was only 14 and we have few living relatives so she would be mostly alone. She married a loser who can't even pay child support.  She works hard and child care alone tcosts her almost half her income so I take up the slack and help as much as I can.  Sounds like you have expereinced alot with your husbands illness and he is lucky to have you.  I think the worst part of this illness is having doctors who are skeptical or think I am trying to get pain meds.  I used the VA hospitals in the late 60s and 70s because I was exposed to Agent Orange and went through years of chelation treatments and also I was diagnosed with delayed stress-that was what they called PTSD in those days when it manifested a while after disconnect with the military.  I was newly married and was quite successful as a musician and had some pretty big named colleagues and friends and was drinking alot but never did drugs or used needles and the hangovers kept getting worse and worse and memory was going.  I'd forget numbers and when I'd write I would know what I wanted to write but it was almost dyslexic.  So my work suffered and my wife and I only 3 years into marriage were having problems so I checked into the VA and had group counseling and things got a little better so I'd check out after about 6 weeks when that program was over and things would go well for a few months and then I'd feel bad again and things would repeat.  Then all was going well.  Years went by and I was my old self and I forgot about it.  My daughter was born prematurely and she had so many problems and surgeries.  The first 5 years of her life she had a trach tube and my wife was very ill form the birth and she never recovered.  I found myself caretaker of wife and daughter and spent 5 years living off of my savings and insurance and my wife had been an attorney so her insurance also paid and daughter was getting disability.  We got by and when daughter got the trach tube removed things were easing up so I could work clubs and I got some contracts in the movie industry sound departments so things were humming along until my wifes illness spiraled down and down and finally she had to go into a hospice.  Then I got sick.  Always felt hungover and blood work was done and I was diagnosed with Hepatitis C.  I never did intravenous drugs and was faithful to my wife and she didn't have hapatitis C and even though my daughter had to have blood transfusions thankfully she didn't contract Hepatitis but I had blood after an injury in the military a number of times and my doctors said I easily could have gotten it there or even a Tat I got in a dirty parlor in Vietnam was likely but my buddies didn't contract it and thee guy used the same gun on several of us at the same time.  It was just not something we even thought about at such an early age with everything else going on and we were all hammered.  So I had not only Hep C I had cancer-Multiple Myeloma and so I was getting two treatments at the same time-Interferon and Campath.  The chemo for cancer was nothing but the interferon made me reallly depressed and I gave myself 3 injections a week for 6 mos.  I never got over it.  I would tell doctors long after treatment I suspected the interferon but they would say:  No.  Just depression. I'd believe them and like I said I went to counseling and I'm sure all the stress with my wife and, oh, I forgot to say while I was on treatment for cancer and hep c my daughter was sent to  live with her only aunt which she did not want to do so she hated me!  All this stress made me believe it was depression.  Depression and a shattered back.  I had ruptured discs

and the Multiple Myeloma dissolves bone and my liver hurt alot and I was actually at one point told I had end stage liver disease so I figured I would die which is why I sent my daughter away.  We are fine now, by the way.  When she matured she realized it was the only option we had.  He aunt is now deceased.  So my doctors said it was all in my head.  And my Psychologist with a PHD would counter:  Tell them yur head is attached to your body and I say it was caused by the Interferon which triggered CFS plus you have so many stressors in your life you wouldn't be human if you weren't freaking out!  He told them ther same and flat said he was a palliative care doctor and couldn't see me because I wasn't dying and anybody wouold be depressed in this case so I could continue seeing a counselor if I wanted but I actually have more education than them and it isn't going to cure me anyway but if it makes me feel better to talk then go ahead.

So....!  Chronic Fatigue syndrome, I found out has a tail.  Some doctors believ it-some don't.  Some treat it with this and that and others treat it with that and this.  I had doctors give me stimulants and end up in icu-norco or ms contin and end up needing more so I wouold stop taking and find myself going thru withdrawal.  I was not taking anything but my heart med and found myself in bed 24/7 and in need of a caregiver.  I wouldn't answer the phone.  Stopped associating with everyone including my daughter until she had my first grandchild.  Then I made an effort and she lives about 500 miles away.  Well this letter is so long and I'm sorry.  I don't want to just write a book.  I found out CFS now has an ME on the front of it and I am desperate to get answers.  I realize doctors who do not know how to cure someone classify us as difficult.  I heard there are persons getting help with ME/CFS amd I told my primary physician and even brought print outs on the subject and he just sneered.  you asked where I live.  I live on a lake fropnt property in Onalaska, Texas.  Me, my two dogs-A mastiff, Great pyrenese mix and they are like my children.  I get out on the lake when I can and work in my gardens of herbs and vegetables.  My life would be idyllic if only I were well.  I'm not feeling sorry for myself but I would hate to miss out on a treatment because I didn't try.  I've never been on a forum.  Never told anyone as much as I am telling this forum.  Not sure if it is a good idea but I figured if I could meet people who have been through this and know where to go for treatment  I can't be wrong-what would it hurt?  I hope I don't have to type this much-sorry if it was too long to read.  Thank you for responding.  I was having issues resigning into the site.  Hope you get this.  Thank you very much and like I said-no-no plans to commit suicide. 

and because I have some little cabins on the property

Thank you Sandy.  No.  Suicide was a passing notion.  

Hi Frank, you certainly have been through a lot!  I can relate - since I too, have been through more than people could ever imagine.  Anyway, I wanted to let you know that I wrote you earlier and included my personal email address, and so when I went to send it to you, I got a message that it had to be moderated and ok'd, probably just because it had my email address in it.  But I shared with you one of the treatments that has helped Garry the most, so I hope you get it soon.  Talk to you later.  By the way, we live in Arizona.

My 3rd attempt to answer.  I keep hitting some key to my right hand and everything goes away!  I have a doctors appointment at 9 and it takes me a while to get ready.  I actually got in a couple hours ago from Luckenbach, Tx --have to hurry.  The moderator removed your link-will contact you when I get back-thanks again!

Hi Frank, I can't believe the moderator removed all that information I sent to you.  All that work - for nothing.  I really hate it when I work on something like that for a long time, only to have it "vanish" and be gone.  I'm not even sure why they removed it, and the only thing I can think of is the fact that I sent my email address to you because I wasn't so sure you would want to discuss all this publicly.  So anyway, there is a way to send private messages to people, but I haven't been able to figure out how yet.  Garry will help me with it, since he's a very knowledgable computer guy, and then I'll attempt to re-write all the information I had in that message, so you can read about what has helped him do so much better.

No problem Sandy.  I just got back home.  I read everything that you wrote.  The moderator just said if we wanted to share emails I had to follow a link that was attached to your message at the bottom-it is gone now however.  I guess if you send it again I'll click on the link and we can then exchange emails.  I'm sure they mean well-well, I'm not really sure but I think they do it so if you trun out to be a business or something-anyway you mentioned Testosterone and mine is in the dumps.  The doctor said I was in the dirt!  Both for testosterone and estrogen-I didn't know men had estrogen but apparently I lack in both.  Problem is he said I cannot take a supplement because of my heart condition.  I have both A-Fibrillation and V-tach after a doctor prescribed aderall to give me a boost of energy.  Woke up in intensive care.  He also said that people in their 50s are at a great risk after  a while if they take testosterone substitutes and there are alot of law suits going around right now because alot of men are dying or stroking out.  He is a senior fellow at Debakeys Methosit Hospital Cardiologists Associates.  I was raring to take the T subs but he said absolutely not.  Maybe because your husbands heart was so weak he had a positive effect.  My heart is good except for the rhythm disorders.  My heart med Betapace has many, many bad interactons with various vitamins, foods and many medicines.  I aksed for a pacemaker and was told people on medicare have to be on the dying list now and I am stable.

This ME/CFS is so common to persons who took anti-virals and or chemotherapies.  Maybe thats why many doctors do not want to aknowledge it or maybe they just don't have an answer.  I get the feeling they think we are malingering or seeking drugs.  How do you cope?  With the stress from your husbands CFS?  My family has all but given up on me-brothers and sisters-my daughter is good and understands.  She offered to come and stay with me but I refuse to put her life on hold.  I'm volunteering at a cancer treatment center to bring kids music and stories with a small group of others.  We call it Spirit Healing-the Medicine that doesn't hurt.  Before I had cancer I never knew how many orphaned children there are with cancer and their treatments are so scary to them so we try to take up the slack the nurses can't do when they get busy.  It is exhausting but I feel better after.  I noticed diet has much to do with CFS-stress triggers it.  Mornings are worse.  My pain management doctor has me getting 3 massages a week-ankles-hands-back and legs and neck and it helps.  They prescribed a cream you may know or may ask about.  It has 3 ingredients-Meloxacam, Duloxetine and Lidocaine and it does wonders for a while.  Medicare approved it.  I am into herbal remedies and there is a tree that grows around the world-don't know about Arizona but in Texas it is everywhere.  Native Americans call it The Toothache Tree and so did pioneers.  It is Prickly Ash tree and the bark has a powerful pain killer.  I mix or was mixing this in Vitamin E and a quality olive oil and applying it to my wrists and hands-well my caretaker was, and then I would put my hands in surgical gloves until I had to go on stage-one night I was  about to go in front of a huge crowd and before I went out I tried to take off the gloves and couldn't feel my fingers-I had to cancel-lol  So I decided to leave the medicines to someone with more knowledge.  Okay my friend i hope to hear from you again.  Really glad the T is helping yur husband-I wish that I could take it-thanks for mentioning it. How is your singing?  What kind of music do you sing?  Husband is able to work now some?   Hope I'm not beeing too nosey.  Frank 

No, not too nosey.  You can ask anything you like.  No, Garry is still way too sick and weak to work at all, but just the fact that he can get out of bed without falling onto the floor, and can get around the house on his own is a tremendous improvement from before.  After the T took effect, he took out the garbage without my help for the first time in 26 years!  I always had to do it during those years, but once in a great while, he helped (just a few times).  But after the T started working, he actually did it by himself.  It was like a miracle.  Sounds silly, I know, but it still was exciting to see him have enough strength to do something like that. Also, the fact that he can now sit up in a chair without getting too sick is a big improvement, because before it was nearly impossible for him.  How low are your T levels?  Are they in the 200s or below?  If it's that low, it's very unhealthy and causes more problems than just a lack of strength and energy.  I read somewhere that levels as low as Garry had were equal to that of a 90-100 yr. old man!  Anyway, I realize your doctor said no way due to the heart problems, but the kind of T I'm talking about that is implanted under the skin, seems to be much safer (as well as much more effective).  I've also read some new articles on how those claims on testosterone being bad for the heart were not accuarate, and that they have now found it to be perfectly safe.  I'm pretty sure that if your levels were up, you wouldn't be nearly as fatigued.  I don't know, but you may want to do some research on Testopel treatments.  But then again, maybe your levels aren't as low as Garry's were, and plus you are ten years older than him, and so they naturally would be lower due to age.  Garry's severe congestive heart failure is pretty much under control now, but he still can't do much of anything.  But before it was under control, his heart would act up even while just resting and doing nothing.  At least now, his heart is usually fine while resting.  He's on three heart medications - Coreg (a beta blocker to help with systolic heart failure), Lisinopril (for diastolic heart failure), and Flecanide (to help prevent the arrhythmias he was having).  I also have him on high doses of CoQ10 which is wonderful for heart function, and also for energy levels.  Are you using CoQ10?  It's great for congestive heart failure and I put him on it many years ago when we found out his ejection fraction (blood pumped out of the heart with each pump) was only 12%.  Usually by the time the heart ejection fraction is that low, the person is already dead.  It was a miracle that he even lived.  Ejection fraction is supposed to be 50% - 70%, and when it gets to below 25%, they start tests to get you a heart transplant, which is what they did with Garry.  But miraculously, his heart improved on it's own, and the heart transplant wasn't needed.  His ejection fraction last time we checked was 55%.

So are you on any pain medications at all?  They tried all kinds of pain medications on Garry for years before finally letting him try ms contin, the extended release kind.  Of course, the side effects weren't nice, but the fact that he could finally get some pain relief was definitely a good thing.  Garry has Fibromyalgia and arthritis, and was in tears every day from the severe disabling pain, even though I gave him massages every day. He definitely needed some strong pain meds.  He also has to use a muscle relaxant to help with the severe pain.  Being in AZ is good for his pain because it is dry here.  Whenever a storm is rolling in (which doesn't happen very often here) the humidity causes the pain to flair up more, and he's hurting much more.  He started out on 30 mg of ms contin twice a day, but surprisingly after starting the Testosterone, the pain levels decreased a great deal!  Awesome!  He was able to then cut back on the morphine, and is now on only 15 mg. three times a day.  He still is in pain of course, but at least it is bearable.  Something else we use to help with his pain is Magnesium with malic acid, which definitely does help.  Most Americans are low in Magnesium which is extremely important to hundreds of bodily functions.  People with Fibromyalgia are always low in Magnesium.

I can't resend that other message to you with the email address because like you said it's gone, and I can't find it anywhere.  I'm a bit confused now and am not sure I can send you my email address without the moderators deleting the message.  But we'll figure out something.  Hope you have a good night.

Oh yes-my Testosterone is 58 and estradol is 13.6 so thats is pretty darn low  Send the email if you want.  The message wasn't deleted-it just said we can't send an email and then there was a link the moderator put up that said we could exchange emails in  a praivate message.  When I came back from Onalaska it was gone.  But I typed a long message and my right hand hit something on the key board and that deleted everything.  Like I said I read the message and was answering what the moderator said.  No biggy.  I have sevedral pain meds- MSContin extended release and Imm release as well as norco-they tried dilaudid but was allegic-.  Because I have a form of Cancer I have serious bone pain in spine and long bones-some doctors suspect I am just end stage for cancer-others think the fatigue an all associated with it is from my overall health but still others compare the health of others and it doesn't fit the bill  I believe my cardiologist doesn't want to rock the boat.  I am looking at my labs from True Health diagnostics and my CRP or hs CRP is High risk at a 10-lp PLA is High Risk at  454 and normal is below 291 B-12 is high risk at 148 and I get a B-12 plus packed red blood cells about 1 a week for the leukemia.  Liked my Neurologist said:  with these labs who wouldn't be fatigued?  but the ME/CFS is new to me and thats how I found this forum-I wanted to know just what the ME part means.  I also learned that anemia in people above 50 is dangerous.  When anemia in blood shows a low level it is much lower in the brain and this causes depression and fatigue-the only way it can be diagnosed is with a spinal tap and there is a doctor in Baltimore who does that exclusively-he infuses iron up there and then when the levels in brain are adequate he sends them home and from there on they maintain the levels with iron supplements.  My blood is so screwed up with cytoblasts and all kinds of blast-lol- I don't know if I'm coming or going.  I someties think the dsocs just don't want to say:  hey -it is not going to get better so make your peace and go to sleep-but I will mention the pellets and you will have to mentio that supplement again-that post is gone now.  Okay?  thanks and good night to you also, Frank

So sorry you're going through so much.  Wish I could be more helpful to you.  ME stands for Myalgic Encephalomylitis (I think I spelled it right).  But it means brain swelling.  And they believe that CFS is really ME, but was given a stupid name (Chronic Fatigue Syndrome).  This is one of the main reasons that so many doctors don't believe it is really an illness, and they think people are either over reacting to their tiredness, or that they are just lazy or malingering like you said.  I've made it very clear to many people that Garry is anything but lazy, and that the reason he is forced to stay down is because if he does more than he is doing, he ends up involuntarily collapsing down onto the floor, and can't get up because of the extreme weakness.  Plus his heart failure is do to the body's inability to create energy.  Anyway, not sure what supplement you wanted me to mention again, but the testosterone pellets are called "Testopel" and the other supplements I mentioned were CoQ10 and Malic Acid with Magnesium.  Gotta go get some sleep so I can get up for work tomorrow. Hope you get this.

I have not removed the post in question - scroll up the page and you will see it or click this

https://patient.info/forums/discuss/after-taking-an-antiviral-therapy-for-6-mos-i-am-now-me-cfs-506821?page=0#2050276

As per my comment there you can use the Private Message service to exchange contact details. The link I included with my comment tells you how to do this. Do not post your email address in open forums otherwise you just open yourself up to spam attacks.

Regards,

Alan

thank you Sandy.  You are very  helpful and please don't answer unless you have time for heavens sake!  thaniks for the name and the moderator said the post you sent was not removed so we can excange emails

thank you!  I appreciate your help