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Tania's journal of drug treatments and other ME things

Discussion in 'General Treatment' started by taniaaust1, Dec 28, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

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    great advice. I cant thou in my case as there isnt any other ME/CFS specialists about the place (3 year wait it was for just that one) and the doctor I have has said she wont have me on as a patient unless Im under a ME/CFS specialist as its all too complex for her.

    (many other doctors have rejected taking me on as ME/CFS case they see as too difficult and the ones who have... all have seen ME/CFS as like a mental illness thing.. so Im are happy to have now finally found a new doctor who dont have that attitude).

    Without a doctor I cant get prescriptions refilled and will be completely stuffed.

    Im going back to the specialist next week.. so I see then just how much he is going to push exercise thing at me once he reads my activity journal. Ive had to ring and cancel the day today as I ended up couldnt get transport there on the appointment which was made.
  2. taniaaust1

    taniaaust1 Senior Member

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    update

    The SA CFS/ME society has contacted me back over my query asking what services others with ME/CFS over where I are, are using.. they suggested I contact a social worker and get him/her to advocate and help (so I still dont know what services others with our illness are using.. Im glad thou they tried to look into it and have replied back thou).

    One of their suggestions were local council but in my case I dont qualify for their help as one needs to be 55 if disabled. I have had a couple of social workers involved in my case in the past and they didnt help me access home support thou they knew how much trouble i was having.

    (I will thou there try again.. thou I havent seen a social worker since one badly offended me.. by trying to prove to me i didnt have memory issues when I did and I was being quite affected by my issues.. she didnt believe me and put me thou a simple dementia test and then declared my memory good after it). My memory issues were so bad at the time that they'd even almost got me into trouble with the law (I busted some boom gates to get out of a car park after my memory of how to get out of carparks and how to work the ticket machines went).

    So Im kind of all back to square one and dont know which major gov org is this state is funding home help for ME/CFS.
    IF anyone in Sth Australia knows anyone who is getting home support here for the illness and who is under 55 years old but not a child (they have other support services) please please share with me the details.

    What I said of done in my reply letter, (poor guy, my letter back was so long) was I should of asked for social worker recommendations, as I think I need one who understands ME/CFS. I think I will do that but not today. I cant stand the thought of running into another social worker who is supposed to be supporting me but who isnt believing how sick I am.
    ..............


    Today Ive had enough energy to be looking up complaint numbers. Maybe some of these will be helpful to another in SA.

    Office of the Health and Community Services Complaints Commissioner Telephone: 8226 8666 Toll Free 1800 232 007
    (free service and they can talk about your next steps)

    Disability Complaints Service Telephone: 8234 5699

    Equal Opportunity Commission 8207 1977
    Toll Free 1800 188 163

    I think Im going to ring the Equal opportuntity commission over disability discrimation as far as ME/CFS goes. Maybe it would thou be better to do them a letter sometime.

    I found an interesting number so rang it.. it was a 24hr health advice line called "Health Direct Australia". I wanted to know if they could advise me of any other service orgs I have missed in my efforts to get home support. The lady at the other end of the number was extremely nice and really wanted to help.
    The phone number for Health Direct Australia is 1800 022 222.

    She provided me with some other phone numbers DisabilitySA (08) 8391 3022
    (they are the ones who keep knocking my home support application back etc and who Im waiting on to see if my third application will go throu.. but its taking them months to sort out if they will or not on this occassion. I guess that is better then an instant knockback just due to me having ME/CFS)

    Community Living and Support Services (08) 85 363 599 (they are an org which provides home help who Ive already chatted to in the past, the people there are nice but their clients are funded by other orgs eg DisabilitySA. Without another org funding me.. they are a ridiculous price to use (i think it was $34-36 dollars per hour ..I may have that a bit confused.. it was thou very very expensive and paying for any petrol on top of that).

    Final number she gave me was for the Dept of Health (South Australia). To phone if I have no luck anywhere else. 08 8226 6000 Maybe I should phone them due to the ridulous time its taking for DisabilitySA to tell me if they are going to knock me back again or what... after now trying to get support for years.
  3. taniaaust1

    taniaaust1 Senior Member

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    Upset today

    Late last night my boyfriend told me that he wont be seeing me till Friday to take me to my specialist appointment then. I was expecting a visit and some help from him Today.. Im out of some of the food basics and have been for a couple of days, I have dirty dishes stacked up on the sink from past few days already so my kitchen is a dirty mess (he does them for me when he visits as Im unable to keep kitchen and keep rest of house clean.

    Im also nearly read every library book (I speed read as long as its something I dont have to think about much) Ive got and watched every DVD Ive borrowed.. so that means by tomorrow the sitting activities left I can do and enjoy will be just the computer (which I get bored with after a while and I dont like to be on that night and day). If Im activity less.. I then "think" about my situation too much which then can end up making me feel depressed and hence then just make everything worst.

    Im crying right now at all the dirty dishes on my sink.. it discusts me (I hate a unhygenic messy house and just cant do anything about it. My activity level only allows me to focus on keeping at least the rest of the house tidy or only my kitchen tidy where the rest of my house then goes to shambles... so I try all I can to ignore just a messy kitchen).

    We've just got over a few days of hot weather to which I then couldnt even do rest of the house inside I usually can manage.. so several days where I didnt do much more then lay and a bit of sitting. So today (and did some yesterday) will be working on getting the rest of house up to being ok again.

    I just wish I could go shopping so Id at least have milk, get to the library so at least I have some more enjoyable things to do then just the computer (I only get 3 TV stations on my TV here so usually nothing to watch there)... and so so wish my kitchen and that high pile of dirty dishes and my pots and pans could be cleaned up.

    Ive been taking the doxylamine succinate for my sleep for past week or so but took my Temazepm last night, only to find it didnt work as well as it had before :( . I dont know if that is cause I took it too early by taking it at 1am after two nights of not going to sleep till 4-5am as with the hot weather.. it was just too hot in my bedroom so I didnt take my other med at 1am as I couldnt bear the thought of going into that hot room to sleep (and my lounge is very uncomfortable to sleep on).

    I caught the diarrhea thing which is currently going around here of late the other day (both my boyfriend and daughter and granddaughter have had it in past 2 weeks.... fortunately it lasted in me less then 24hrs (my daughter had to spend 5 days on the loo). I took some Gastro stop pills and tollerated them well.

    Yesterday I was getting chest pain again.. I had it for many hours, this time just on right side of chest. I hate it when I get that as it makes me concerned due to all the heart problems in my family.
  4. taniaaust1

    taniaaust1 Senior Member

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    New med for period pain

    My new GP has prescribed a new med for my period pain.. she's got me on the anti-inflammatory called Ponstan http://en.wikipedia.org/wiki/Ponstan which she said is specific for that kind of pain. My menstrational cycle this month was 48 days long.

    Ive also currently got another steroid cream to try to fix the skin discolouration thing on my foot/ankle thou that failed last time a doctor prescribed steriod cream for it. When I told the doctor it becames more distinct when I shower.... she said that could show its a vascular issue.
    ah well.. let me see how if this Clonea (clotrimazole) works or not.

    Tomorrow I go back to my new ME/CFS specialist. I hope I got wrong impression when he mentioned exercise to me last time as Im very sensitive to that word "exercise".. I will soon see.

    ....

    ohhhh i just found out from my boyfriend that we may have issues getting to my specialist appointment tomorrow as due to the Grand Prix, many roads in the city are blocked and my appointment is in the city. This may pose a HUGE issue for me as I cant to walk far and dont have a wheelchair so was relying on my disability parking pass to help get a disablity park close to the specialists clinic.

    Boyfriend has told me not to stress about it so Im trying not to do so. (I hope it dont turn out to be a case of him trying to carry me to an appointment).

    Cause of the grand prix (its a car race).. there has also been huge traffic jams, so that unfortunately means we are going to have to leave far earlier for what is really a too early appointment for me in the first place. Im not looking forward to tomorrow, getting to this appointment is going to be nightmarish and I'll be doing it on hardly any sleep

    Ive been getting to sleep between 2.30am and 5.30amam of late.. which is a lot better then the past but its still going to be bad for me for a morning appointment in the city.. Im in the country.. specialist only had morning appointments.

    If my boyfriend wasnt dropping a family member who's going back to England, to the airport the day before, I would of got him to pick me up night before and would of stayed the night in a motel close to that appointment like Ive often done for morning appointments. (umm motels probably would of all been booked out thou anyway, due to the grand prix)
  5. taniaaust1

    taniaaust1 Senior Member

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    I didnt make it to my specialist appointment last week, ended up having to cancel it that morning as I couldnt get myself out of bed, I was in tears just thinking about getting up as my lethargy was so so severe, I was terribly exhausted and I didnt know how I could do that appointment when like that.

    Lucky I did cancel it as I then spent most of the next two days in bed due to the extreme exhaustion (if I'd gone I would of been even worst). (I think I'd done too much the day before in trying to get ready for the appointment).

    So the appointment was remade for this coming Thursday
  6. taniaaust1

    taniaaust1 Senior Member

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    Second appointment with ME/CFS specialist Dr Del Fante

    This appointment went far better then my last one, I'll give how this one went, a 10/10.

    I was left feeling quite concerned last appointment as he'd mentioned "treatment program" and the word "exercise' had been mentioned during the first appointment. Him talking about the PACE trial and how that shows how we can be helped (which I know was actually a crappy trial) .. and also saying that ME was no different to CFS, further worried me on that first appointment.... so I went to this one very nervous about it, with lots of concerns about him there.

    When I got to the appointment there was too much left over from others perfume in the waiting room thou only one person was waiting there. (My eyes started instantly stinging and weeping down my face and I started feeling not good). So I ended up embarrassingly having to sit in the cooridoor on the floor just outside the waiting room. (I ARE going to get myself one of those sticks with a seat on it real soon.. there are so many times one would be so handy).

    This appointment I decided to like try to go in and take control and lead my appointment (rather then how the specialist taking it to places I didnt like) and the way it would go (rather then being more timid like I naturally are when seeing a new ME/CFS specialist) .. so went in there with 3 actual goals in mind, to control the way the appointment would go.
    1/ Get a new Melatonin script
    2/ See if I could get a script for something else to trial for my sleep (whatever he'd recommend) to add to the current things I take
    3/ To try to get on the Transport assistance scheme.

    I had no idea how that would all go as we hadnt even got a chance to go throu my meds on the first appointment (cause I hadnt taken them in nor had time/energy to get a list together) but I took a list of all the things Im on with me this appointment. (In my next post.. I'll put up my current treatment list)

    It turns out he seems to be fine with all the meds I was on so I got my melatonin script and was quite okay allowing me to trial another sleep med to my sleep med mix... so now Amitriptyline (endep) has been added to my meds to try. 10mg and Im going to trial 10-20mg at night to see if it does help me sleep any. (I are a bit concerned with that med as I think its one which raises serotonin? and in the past Ive reacted badly to anything which does that but I will give it a trial).

    When I asked about the Transport Assistance thing (which if I get will allow me to get half price taxis), he seems to think I wouldnt be able to get it as the criteria are rather tough but told me to take the forms and booklet home and go throu it and get back to him about what I think.

    Ive had a look at it and it is different from the forms they used to have and there is a question there now which would allow me to add in that MCS stops me from being able to catch buses, so that possibly may be one thing extra which may help me to get it. There forms thou still dont cater for an illness which varies each day so much.
    ......

    It was my birthday the day of the appointment (yesterday) but seeing we were in city for the appointment we had a quick trip to a shop I really like and I spent my birthday money while there... so my birthday even with having specialist appointment, turned out to be quite enjoyable.

    (With my birthday money I replaced some of the essential oils I use for various reasons which had been stolen in housebreak in in the past. Ive been missing them).
  7. merylg

    merylg Senior Member

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    Happy Birthday Tania! Glad your specialist visit went well for you & that you had a nice day! :balloons::birthday hat::victory:
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Happy happy birthday tania, glad your appointment went well.
    That dose of endep is quite low and i dont think it should cause too many problems, i have actually started on 25mg of endep, although not sedating it is helping with sleep some plus i still use sleep meds with it but using less.

    cheers!!!
  9. taniaaust1

    taniaaust1 Senior Member

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    Thanks for the birthday wishes :).

    My boyfriend brought me another enamal frypan seeing I like the smaller one so much. My mother is going to give me some money for my birthday so when I get that Im going to go on ebay or somewhere and try to buy a few ME/CFS books Ive wanted for ages. (I'd really like to get hold of Hillary Johnsons one).
  10. taniaaust1

    taniaaust1 Senior Member

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    Amitriptyline trial for sleep

    I ended up waiting another night before starting this trial as I had several symptoms when I'd planned to start the trial and thought I may not be able to tell the difference between ME symptoms and drug trial symptoms seeing the ME was flaring.

    Last night I started the trial. I took 10mg of the amitriptyline at 2.30am (Past two nights my sleep pills hadnt worked as well (as fast as normal) and I thought it may of been due to me trying to move my sleep time forward another half an hour again..so to give this new drug the best chance of appearing to do something, I decided to take it a bit later when already tired some).

    I dont know if it just works slow or what, (CFS specialist said if its going to help my sleep I will be able to tell if it is after only trialing it a couple of times but he didnt say how long it actually takes after taking it takes to feel the affect).. but I was still awake at 4am after taking it. (Maybe I was expecting it to work too quick??). One thing which was a bit strange is I woke up more after taking it..went from being sleepy and tired to not being sleepy.

    I didnt get any bad side effects from 10mg of it, thou had a slightly dry mouth this morning but that may of been due to the POTS.

    This morning Im feeling tired and sleep deprived as thou I got a light blockout blind on one window.. I havent been able to find one to fit the other window (Im going to end up sticking cardboard to that window some time)..so the light this morning woke me up so I havent had much sleep. Ive misplaced my eye mask so couldnt use that.

    Tonight I'll trial it again.. this time doubling the dose so will be trialing 20mg.
  11. Mary Poppins

    Mary Poppins PJ Princess

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    Happy birthday darlin xoxo

    I've taken Ponstan before, it's not too bad. Hopefully you can find some relief with it.

    How are you going social service-wise? Sorry, I can't read all the thread at the moment :hug:
  12. taniaaust1

    taniaaust1 Senior Member

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    Update on Social Service going ons

    I had a surprise visit from DisabilitySA guy this week (they've changed their name to "Disability Services"). They may of been the ones who tried to ring one morning when I didnt answer the phone but waking me up, (specialist has told me to tell EVERYONE to ring me in afternoons rather then waking me up in the mornings but it seems Im ignored).

    He came to tell me how my case is going. He's said he's putting something in this week (im confused as I thought he put my submission in before). He says he's aware that I do need some help and that I'll know in about a week whether Im accepted in getting home help or not.

    So its ****fingers crossed*****
  13. taniaaust1

    taniaaust1 Senior Member

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    brought myself one of those cane/chairy things

    I brought myself one of those walking stick chair thingies this week. Im sick of the embarrassment of having to sit on the ground or floor of places with everyone looking at me which happened to me again last week when I couldnt wait in the doctors surgery room re perfumes. It should help me a bit, thou I often need my legs up or level with my body after Ive been on my feet for a short time, I dont know how much.

    My boyfriend thou is making me wish I hadnt brought it.. as he wants me to take it EVERYWHERE with me, even to the local shops where there is a seat I usually sit on. I much prefer to sit on a seat already there then be having attention brought to myself by a cane chair.

    I hate to have my disability showing when it comes to this small country town in which some horrid things are some times said. I know as my boyfriend says I shouldnt worry about what others think.. but I do esp if they are people I often have to come across.

    (Gotta talk to my psychologist about this at some time.. I hate how my boyfriend is trying to force this issue at the times when there is a chair at the place I already use there.

    I know embarrassement is a stupid feeling to have but I have it and cant see why I should be put into an unnecessary embarrassment situation. I dont know how to get throu to him to stop pushing me in this way).

    There is a difference between being forced to use something by choice then being forced to use something by another person even if they think they are acting in ones best interests. How I feel about it, even if my feelings ARE STUPID, are not being heard.

    thank God he's currently keeping his aggression levels down so he's not currently getting frustrated at me and yelling at me over this.

    I need a little time to get my head around having to use this new aid.

    Just because I brought it as I KNOW I need something.. it dont mean that Ive instantly accepted the situation completely and easily esp when using it locally, I know its going to make things so some noisy locals will be approaching me and asking me questions about it. I dont want that to have to happen unless really necessary.
  14. Mary Poppins

    Mary Poppins PJ Princess

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    Your feelings are valid, Tan. Take all the time you need to adjust to the new aid and the complexities that arise from that. :hug:
  15. taniaaust1

    taniaaust1 Senior Member

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    thank you Mary. I think I do need to hear at times that my feelings even if they are stupid are valid to have.
  16. taniaaust1

    taniaaust1 Senior Member

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    Nightmares... could the Doxylamine Succinate be going me more of these?

    I noticed the other day that I seem to be having more nightmares then I usually do while taking the sleep aid (anti histamine) Doxylamine Succinate. While I was trialing the other drug for 10 days I had no nightmares at all... The first night I start taking this med again, I have a nightmare then have another nightmare on the third night Im back on it.. Maybe its a coincidence, or maybe it isnt.
    ...
    My nightmares arent of the kind in which Im running from a monster (I think cause I do accept the fact I have ME, the monster dreams were in early ME days), but rather all about my Aspergers and ME and the issues I face in my life with dealing with these.

    The emotions I manage to keep down in my real life, come out in my dreams to the point Im just screaming and sceaming in my dream over things to the point where Im actually trying to tear my hair out, then waking up at times with tears over my face.
    ......
    The Dream

    I really want to go to college so I go there (in real life I had to give up college due to the ME). Im in a room with the other students and we are discussing the classes and which we want to do.

    Im having trouble interacting with the others, dont know how to join convo, so just sit there and dont say a thing. (In real life I have Aspergers, so its near impossible for me to know when to enter a convo when with others, even in one to one, I have issues with talking to someone I dont know well. By the time I realise there is a gap for me to speak its gone so I rarely get to say a word in group situations. When I was in college I didnt speak and hence never made any friends at all there even after a few years).

    I think this part of my dream was set off by someone at this site recently pming me that I should make friends so I have people to help me more with the ME stuff.... that was upsetting to me due to the extreme difficulty I have of making real friends due to the Aspergers, its something I dont usually manage even before I had ME. I so so wish it was that easy.

    An Aspergers person being told that they need to make friends so they get more help, is just like a severe ME person being told that they need to exercise to help themself. The comments hurt.

    I know the person didnt mean to upset me and was trying to help me but I are upset over that comment as it shows me yet again how people (HUMANITY IN GENERAL..this isnt at all about that one person) understand my situation. My lack of friends and inability to make real friends, is a point in which already is emotionally hurting me).

    (dream) A few other students including one I really like and wish I could be friends with are discussing an article. They are saying the person in it is bad. I dont really understand the issue at all but as I so much "wish to fit in" that I just decide I wont like that person in that article either and with dish them one could say. I try to be liked and join in the class by doing this but get the opposite reaction.

    Everyone is appalled at me for it and start sticking up for the person who Im being mean about. I dont at all understand the whys of this as I think Im doing what they did earlier. (In real life due to Aspergers I make same kind of stupid mistakes when Im trying to make friends... I often go about it all wrong.. and I study others interactions trying to work it out and copy them but doing that dont seem to work for me).

    In the dream Im now rather distressed as now the one I really liked and wanted to be friends with hates me.
    Some in authority places in the college notice I have issues and decide to try to help me. They pull me aside and start offering suggestions. Unfortunately each suggestion they make isnt suitable and further upsets me eg they suggest that I go hiking with class members to try to form bonds with the others.. thing is I have ME and cant do that. They go on and on with the suggestions.. none of them Im capable of doing.

    The situation worsens due to those who are trying to help me now not believing me, as Im telling them I cant do each thing they suggest and they end up believing that its not a case I cant do but just dont want to do. In my dream some of them like then give up and start rolling their eyes at me on hearing what I say when others are still trying to suggest things.

    Im aware how stupid I must sound to them... thing is all this is TRUE. Nothing Im saying is just an excuse but real reasons why I cant take up each suggestion. (I think all of us who have ME have been treated like this).

    They end up giving up on me and walking away and just leaving me. (In real life I have a fear of abandonment as it has happened so often to me by those who should help me... in my dream them doing that was horrific).

    I cant emotionally stand the situation so like go half crazy at this point.. I start ripping my hair out and hitting myself in the face. (In real life when Im extremely overwhelmed, that can be my actual emotional response when under severe stress but one I usually manage to bottle up).

    I then flee (another real life emotional response of mine when in a very bad situaiton I cant deal with). Im running histerically crying and feeling abandoned and that no one cares. I wish someone would come after me and comfort me but know no one wont as no one cares enough about me. (its kind of how I feel in real life but i have in real life got my boyfriend who cares. in real life my sister when I was having a breakdown just turned around and said "they should just lock her away". I will never forget her saying that).

    Im away from everyone.. all alone and hiding in a bush, extremely emotionally messed up to almost the point of insanity. I feel like I cant face people as they as no one understands my illnesses and hence I kept being treated very wrongly/unfairly. I cant trust anyone not to emotionally hurt me. (In real life that makes it even harder for me to get close to anyone. I do my best to protect myself as I cant bear the poor treatment I get otherwise).
    .........
    :( I really hate how my life stuff is so often coming out in my dreams. I guess thou my subconsciousness thou has to try to process all those feelings I constantly need to block and make out to others that Im fine when they say unsuitable things to me and trigger emotions off even more.

    I probably need to go and see my psychologist again and talk to her about my life stuff and let some of this emotional stuff out some (with the Aspergers I usually cant cry without a trigger.. so I can manage to bottle it all.. till I explode with the pain..at that point the emotional pain is so great that it has lead to trouble with the law).

    One little innocent suggestion put to me which Im incapable of putting into action... can just trigger things and bring my pain more to the surface...

    Nightmares. I hate nightmares

    I think the impact of having mutiple things affecting ones fuction in the world isnt 1, 2 , 3 (3) but rather 1 x 2 x 3 (6)
  17. Nina

    Nina Senior Member

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    Tania, I get horrible nightmares from anti-histamines as well. I didn't know that was common but it's very clear to me they are responsible.
    taniaaust1 likes this.
  18. taniaaust1

    taniaaust1 Senior Member

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    I think I'll do a post on the forums at some point to try to find out if nightmares from anti histamines are common or not, it may not be common or maybe its an issue which is more common in ME/CFS people?

    Last night, still on antihistamine, I had yet another bad dream... tonight thou Im going off of them again for a week or so, so it will be interesting to see if I get no nightmares again then.

    Thanks for sharing your experience of them.
  19. taniaaust1

    taniaaust1 Senior Member

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    CFS specialist Dr Del Fante.. another appointment

    :D I think this was my 4th appointment with him (Im choosing to see him every 2 weeks) and it was another great appointment. It was ONLY the very first appointment he mentioned the word "exercise" and also about how good pace trial is :( and nothing on those things has been said since, since ive been taking more control of my appointments, (in what exactly we are talking about).

    Today.. I went to the appointment with the aim of discussing 3 things so choose the following
    1/ How the med for sleep trial (amitriptyline) is going. (That trial of 10-20mg dose of it was a complete failure).
    Result: have been told now to try it in slowly increased doses up to 50mg.

    2/ Tell him about my POTS and see his response and if he'll help me with it.

    3/ Took in the photos of the outbreak in my throat which happened the other day (but is now clear.. I never seem to be able to get to a doctor to show them things when they are happening). His response was it was an outbreak of herpes type 1 or 2. For the photos I took of my throat I put them on following thread http://forums.phoenixrising.me/showthread.php?16893-Mouth-issue-Can-anyone-tell-me-what-this-is
    ........

    I was terribly nervous before the appointment.. to the point of bursting into tears a couple of times due to my past experiences with doctors when it come to telling them about POTS etc .. so was very scared I may be again ignored. Fortunately... Dr Del Fante was great about it.

    He told me what steps he uses to treat it.. I've already tried all his first steps which dont involve medications for it eg drinking a lot (only helps some), strengthing my legs (calves) (that did nothing), salt loading (does nothing) etc except doing the support stocking thing, so it now is a trial of support stockings for me. I'll share more about these probably in my next post (tired and needing rest).
  20. rlc

    rlc Senior Member

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    Hi Tania, sorry to hear youve been having such a bad time and your doctors have been crap! It sounds like what you have been seeing is not ME specialists, but docs who believe the psychologists view of ME and are pushing GET, and using drugs to mask your symptoms.

    Reading through what you have written, a couple of things stood out, you said you had test results that said you had an Imbalance of LH and FSH, and that you had two 24 hour cortisol tests show low cortisol and one that only just reached the bottom of the low level, have these results been followed up on?

    LH and FSH are made in the pituitary gland, if there is an imbalance in these hormones the patient is supposed to be sent to an endocrinologist to find out why, not given psycho babble treatment. There is information on LH here http://labtestsonline.org/understanding/analytes/lh/tab/test and on FSH here http://labtestsonline.org/understanding/analytes/fsh/tab/test

    Low 24 hour cortisol results are also supposed to lead to an extensive investigation to find the cause which can be one of these 24 possibilities http://en.diagnosispro.com/differen...ree-cortisol-24-hour-decreased/14948-153.html all of them diseases of either the adrenal or pituitary glands, and GET is not a good idea for anyone who has any of these conditions.

    The pituitary gland also produces a hormone called ACTH this sends a message to the adrenal glands to produce cortisol, if the pituitary gland is damaged and doesnt produce enough ACTH the adrenals dont produce enough Cortisol, it is called secondary adrenal insufficiency or secondary Addisons disease. The symptoms of Addisons and secondary Addisons are the same except you dont get the increased pigmentation in secondary Addisons, and sound very similar to what you are describing, the symptoms are described here http://www.nhs.uk/Conditions/Addisons-disease/Pages/Symptoms.aspx this site has some of the less common symptoms http://www.freemd.com/addisons-disease/symptoms.htm It even includes oral lesions

    Addisons has been mistakenly diagnosed as ME in the middle of past ME epidemics, because the symptoms are so similar!!

    If you have a serious adrenal problem taking very low dose hydrocortisone wont do anything it is not enough to make a difference.

    My feeling is that because you have failed LH, FSH and 24 hour cortisol tests, if these havent been followed up on and extensively investigated then they should be, it is what is supposed to happen! Otherwise serious and potentially fatal diseases can be missed and it is a very dangerous assumption to make that any failed test results are caused by ME, until every other possibility has been properly ruled out!

    You need to see and endocrinologist, you may have one of these conditions not ME, or maybe both, but most of these endocrine problems can be treated, dont let anyone tell you that having a morning cortisol test in the normal range rules this out, it garbage, lots of people with these conditions dont fail that test, what is needed for adrenal problems is an ACTH stimulation test. If you want to post your LH and FSH results I will see if I can give you anymore ideas on what they might mean.

    Regarding your Vitamin D, the test you need is for vitamin D3 it gives the true measure of what is going on, if you have a vitamin D deficiency as well it will only be making things worse.

    I feel very sorry for you, reading between the lines of what you have written I get the impression that your doctors have been thinking youre nuts, and are treating ME as if it is a mental illness, and prescribing you psychiatric treatments, while not following up on test results that indicate the possibility of a serious endocrine disease, and your basically just being given the run around and left to suffer. Keep being strong and get yourself to an Endo as soon as possible to find out why you are failing those tests.

    All the best

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