ME/CFS and the Change of Seasons: How Does This Affect You?
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New drs are painful???

Discussion in 'General ME/CFS Discussion' started by heapsreal, Sep 12, 2018.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    My doctor who i have had for a few years now has retired. Caught me by suprise as he did retire early.

    Now im back with a doctor who my wife sees and who i saw in my early days of cfs and i moved on because he was useless then.

    He's prescribing me the meds i need but isnt comfortable with antivirals. Still doesnt believe they help me with my cfs. My last visit said i should try and cut back on my famvir from 500mg twice a day to 500mg once a day and eventually try and stop them. I said to him i went up to that dose as lower doses werent helping. He's trying to be polite but basically said he doesnt think cfs and or the shingles rash that flares up with headaches etc has anything to do with an active virus and that its just neuralgia. I told him it doesnt take long if i stop avs for things to go bad but i said i will try it once a day. I was thinking that dr lerner has written that several years on avs and the virus can burn itself out, so it was a thought i had?? 9 yrs now on famvir, looks like its a forever med for me.

    So 3 days now on 500mg once a day of famvir. Last 2 days off work as insomnia has been bad. Basically sit up until 5am to call in sick then load up on more drugs to sleep which is from 6am to 10am. I have been taking sleep meds at night but of no help. My body clock has gone bonkers. Today ive been feeling fogged out of my skull. Doesnt feel shingles related yet but reminds me of cmv being active. All this in 3 days on a lower dose.

    So ive just gone back to my normal dose. These drs?? You just know he's going to say its a coincidence that i feel shit on lower dose of famvir. I even gave him copies of my nk function study i was in, im sure he hasnt read it yet. I hate dealing with clueless drs. Hopefully ive got this reactivation early and hit it hard.

    Ive looked online to see the price of famvir and self treat but the cost of famvir and another med i use are costly and much cheaper getting it on prescription, if he continues too, that is.

    Changing doctors after you have found a good one can be up their on our list of things that frighten us and frustrate us. Especially since ive been managing it ok with only minor hiccups every so often the last couple of years.

    This shit never ends, the depth just varies.

    Cheers
     
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  2. alex3619

    alex3619 Senior Member

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    Good luck. I so know the issue. Right now I cannot get to see docs when I want, or dentists. So I might have to change docs again. So I know the issues you discussed, though I am not on antivirals.
     
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  3. AndyPandy

    AndyPandy Making the most of it

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    Hi there @heapsreal

    Have you thought about approaching NCNED?

    I think they might have stopped operating their clinic but they might know of a sympathetic dr up there who might be more open to prescribing famvir.

    Best wishes Andy
     
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  4. AndyPandy

    AndyPandy Making the most of it

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    PS I recently met someone down here with ME who basically lied and said they had genital herpes so that they could be prescribed antivirals on an ongoing basis. Said they are lost without them.
     
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  5. Judee

    Judee Senior Member

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    My doctor also retired in December so I can understand your frustration on finding a new one who will work with you on this disease.

    I was hopeful that my new doctor would be sympathetic to ME/CFS because she has worked with the vets who have PTSD and some of the aspects of that are similar to ME/CFS but then she started pushing exercise and CBT. :(

    It took me a while to find her too because I have state insurance and most clinics around here only have certain doctors you can go to and most of those doctors are booked out more than 3 months so the effort of looking for someone new right now is too much.

    I mentioned ME/CFS to my mom's new doctor even though his clinic isn't taking new state patients. He seems very nice but I could tell he doesn't want to deal with this disease at all so that's out. :(

    I hope you can get someone to work with you. It sounds like you really do well with having a regular dose of the famvir and that everything goes haywire for you if you don't.

    I don't know if this would be safe with what you are on now so you would have to check with your pharmacy but RMA (Red Marine Algae) is suppose to be very helpful with shingles. I have HHV6 and it seems to help me a bit on the crash days.
     
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  6. RuralRick

    RuralRick

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    Here's my advice. Do everything he suggests and let them fail. Let him see that you are trying and following his suggestions. After a few failures, he will feel like he has done his best to find another solution and he we eventually relent and give you the antivirals, if for no other reason than to stop you from coming in so often. So, just completely exhaust him by coming in over and over and at the same time following his advice.

    Good luck!
     
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  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    This dr basically hinted at doing this so he may be open to it and also by pharmacist did too, lol. Its hard to believe avs make such a difference but i took a big dose yesterday and actually slept better and feel better today. It cant be placebo, its happened several times in the past when stopping and starting avs. I wish in australia there was proper viral testing to show viral load etc.

    Cheers
     
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  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    As soon as CBT gets mentioned it takes the wind out of your sail that theres any hope with that dr.
     
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  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Lol. Thats probably the best plan.
    Chronic sinusitis which responds to antibiotics he thinks is allergy related and recommended a double dose of nasonex and zertec every morning. When i went back to him and said it didnt really help and i only felt better once i did the antibiotics, he was really suprised the nasonex and zertec didnt help. I was actually suprised at his reaction. So now i have a blood test to check for allergies and ige levels that ive had before. I stopped the stuff he said and im taking an antibiotic (self prescribed) and its much better.

    Funny thing is when i first saw him recently i said im over any investigations etc and what i want is someone to help me keep my current treatments going. But he's digging around still. So like you said, i will just let him burn himself out trying to prove me wrong.
    Appreciate your advice, it made me laugh. Lol
     
  10. AndyPandy

    AndyPandy Making the most of it

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    Hi @heapsreal

    My husband has shingles for the first time.

    He has been prescribed antivirals for the virus and also low dose antidepressants for the nerve pain.

    Is there anything else you can suggest might be of benefit?

    Thanks Andy
     
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  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Adequate pain relief as this can also reduce damage to the nerves and prevent postherpetic neuralgia. Antidepressants are suppose to help nerve pain but not always adequate and dont be scared of some type of narcotic analgesia like endone etc for short period of time and or lyrica. With shingles the pain can be an indicator the nerves are becoming damaged and irritated. If you chat to the chemist, they can advise you on certain creams that can be put directly on the shingles for pain.

    I hope that helps
     
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  12. AndyPandy

    AndyPandy Making the most of it

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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    If he's not a cfser, things should be fine
     
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  14. AndyPandy

    AndyPandy Making the most of it

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    @heapsreal

    He doesn’t have a diagnosis but has some symptoms consistent with ME. He previously had mono and his immune system is compromised with multiple fungal skin infections for the past four months or so. I’m keeping an eye on him.
     
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  15. Judee

    Judee Senior Member

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    @AndyPandy, I know you meant the question for someone else but I wondered if he is able to take additional supplements with that prescription? Red Marine Algae is suppose to help a lot with Shingles.

    Also in the book Foods that Heal by Maureen Salaman she said her friend Dr Jonathan Wright, M.D. told her about a DIY salve that he says brings almost instant relief for the discomfort of the rash (I'm quoting almost word for word).

    It is made from otc zinc ointment (she didn't say how much), 1 Tablespoon of aloe vera, and the content of one 1000 iu d-alpha tocopherol vitamin E (not DL-alpha per her book), mixed together and applied to the vesticles.

    I may have also heard of lysine cream for cold sores. Maybe the pharmacy could advise you on that.
     
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  16. AndyPandy

    AndyPandy Making the most of it

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