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Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
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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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    Following photo was taken about 1 week after stockings left one of the rows of sores and marks (I then didnt wear them for a few days allowing my leg to heal) and then worn them again.. only to develop another row of these (some were actually open sores). This photo got taken then a few days later when they were healing. (sorry photo is blurry). This is putting me off of wearing the medical compression stockings for the POTS which I sooo need to wear. (Ive had problems with what a doctor thought was staph in my leg before for over a year which turned a section of my leg completely black (it got treated with quite a few courses of antibiotics but kept coming back..it was very hard to get rid of) so I now worry about open sores and getting staph again. The staph I had in my leg in the past was in the thigh area (where these stockings are now causing issues).

    **note..before the move and over doing it.. I'd never been even marked by my stockings let alone them causing me any sores. (I do have some slight bruising too in that photo but cause Im clumbsy.. I currently arent bruising easy but tend to walk hard into things). Anyway..that is the showable things the move over the 2 weeks caused to happen (dont u hate how the most aweful symptoms thou cant be seen!!!)

    [​IMG]
  2. taniaaust1

    taniaaust1 Senior Member

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    Advocacy

    One of the most important Advocacy things for probably this year is getting Ampligen approved so at least those ME/CFS who think this "may" help them, have an opportunity to try it to see and hopefully be one of the lucky ones and improve. This drug will not only help some but will also help this illness be seen more as the serious illness it actually is. I havent been doing much at all advocacy of late due to the house move and trying to sort stuff out from that but felt I had to make an effort and do another email to Kathleen Sebelius requesting for Ampligen to be improved. (I would of done more but couldnt use my email before)

    I ask that those even who dont think this drug would help them, to help those who do think it will (or those who have tried it and know it works for them) and send an email supporting the rest of us to have this drug approved. The address to send emails is kathleen.sebelius@hhs.gov .

    Here's the advocacy email I did and sent to kathleen sebelius... share your stories with those who need to hear them if you are able to do so. We all need to support each other with getting various medications approved for us, no matter what subgroup we are in.

    "
    Hi, I emailed you 2-3 weeks ago and said I planned to share each day a day of my life as I know gov people just arent understanding how severe this disease is for some of us. Unfortunately my planned failed due to my ME/CFS brain issues.. and for a while I forgot how to get into my email so couldnt send emails again till now. (I have trouble doing simple tasks with this disorder).

    Yesterday was a very good day for me as Im currently on new supplements (methylation protocol supplements) which are helping... I managed to wake up at a decent hour and then managed to push myself, something I shouldnt do, for 30 minutes digging in the garden (weeding) but was only ok for the first 20 mins. After I'd rested for the rest of the morning due to feeling dizzy with headspins. In the afternoon I managed to unpack 4 boxes of stuff (as Ive moved house 3 weeks ago and even my basic daily useage stuff is still in boxes as I dont have the help to do all which needs doing.. I still dont even know where the sheets for my bed is so going without!).. I also managed to cook a nice dinner for myself.. which is something I manage only to do half the time.

    Today due to what I did yesterday.. I had to sleep an extra two hours and couldnt get out of bed till late morn. Today.. Im also feeling generally unwell due to the overdoing it yesterday.. itchy sore throat, congested nose... and I suspect by tonight when the night air hits that Im going to have the cough back that I'd had for the past 3 weeks and only just had got rid of. With my ME/CFS I get a lot of VIRAL symptoms.. so I suspect that Ampligen is more likely to help me. (Im getting a lot of reactivating viruses too ..herpes, HPV and also seem to be getting croup). I got ME/CFS 16 years ago and are on Disability for it, I cant even work part time.. I get home support as I cant even take care of all my needs..

    Please please approve this drug. Long term severe patients like myself understand that this drug even if it is improved may not work for us..but the thing is it just may too.. we'd like to give it an opportunity and give us then an opportunity to have a normal life again and do things like get back to work.

    Yours Sincerely
    Tanya Selth"

    ...

    I know I have a silly word error in that email (improved instead of approved) which I didnt see until I'd sent it thou I corrected the email sooo many times.. ah well. it will still get the point across.
    heapsreal and merylg like this.
  3. taniaaust1

    taniaaust1 Senior Member

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    Feeling Down ..things not working out in the new home

    Ive missed and been cancelling medical appointments as I have no one to get me there.. this has been happening for the past SIX weeks.

    Missing my blood tests etc etc (I do have the path forms but havent had anyone who has time to take me to the lab let alone back to the doctors for followup for my last shocking test results). I finally today thought I would be able to get to at least one medical appointment that I made for Friday but once again.. Ive just found out no one can take me (reactiving viral thing which I get at times when I over do, which I want to get blood tested while coughing as I have been for past 2 weeks as Im wondering one of the pneumonias will show on it then. want go now for tests before it goes again.. Also this doctor knows a bit about lyme testing too).

    Im truely upset at that Im having to cancel out medical appointments due to no way to get to them.. Ive never managed to get all my symptoms in good control due to lack of easily being able to get to doctors. It makes me feel like the world dont care.. my sisters are too busy to help, my boyfriend is going interstate again.. and the disablity agency does nothing but just keeps saying it will arrange the support org (Im sure the guy IS in fact doing that) but then that support org never rings back. Its been 2-3 weeks now since I moved in.. and they were going to arrange it right away and told me it wouldnt take long to sort out.

    I rang DisabilitySA again today over it all and they are once again going to ring the support agency to find out why they havent rung me yet.. and said they doubt if anything can be arranged by Friday .. so told me I probably will have to cancel my medical appointment. I dont know the result of them ringing them as they never rang me back to tell me what is going on.

    My family too who just threw everything mixed into boxes and promised they'd come and help sort.. of cause never did either (I thought that would happen). An elderly friend of my mothers thou came down today (she got her daughter to drive her) so she could look at my new place and give me a hand for 2 hrs. She fortunately did my dishes..so FINALLY i do have a clean sink and helped me put books into the bookshelf so at least that is now sorted. At this rate its going to take 6mths to get blinds and curtains in my windows so my house isnt completely open to everyone starring in (someone was watching me from the street last night in a car throu the uncovered windows then I thought someone was in my back yard last night).

    Anyway..right at this moment I feel depressed over it all. Depressed I cant get the help Im needing and esp depressed I cant even do anything for my health right now cause I cant even get to doctors (if I was bedridden I'd accept that better then accepting the situation now where Im well enough to go to a doctors appointment but just cant get there).

    I wish someone could advocate for me and get throu the the Disability agency that i NEED to be seeing doctors specialising in things and who arent close to me as I need to see many for many different issues I have and unfortunatley they are all about the city and more then just 5-10mins away. I cant even get a half price discount on taxi's as doctor wont say I cant walk far..even thou I often cant.

    I'll try to get hold of the following place tomorrow, I tried ringing them tonight but those they say I need to speak to are only there in business hours so I'll try again http://www9.health.gov.au/ccsd/usr_general/gen_home.cfm
  4. taniaaust1

    taniaaust1 Senior Member

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    Oh i'd like to share what happened with the disablity agency and the home support too.

    I had a home support org ring and arranged time and came out and saw me .. they were very nice when two of them came to my home and talked about my situation. They said they'd look into my condition to make sure they found me a worker who'd be right and they did all that (they read the info I sent with interest and everything). They arranged a worker for me the next week. I couldnt have been happier... this support agency was very efficient and good.

    The day before the home support was meant to start and come and help me, I got a phone call from agency to say the DisabilitySA hadnt sent them the paperwork so the home support agency couldnt start work here till they got that.

    So I phoned DisabilitySA and after a brief moment of confusion.. we discovered it was the wrong agency who'd contacted me and that DisabilitySA has sent all my paperwork and given the contract for my support to a different agency. .. an different agency who hasnt even bothered to ring me and still hasnt done (thou its been a couple of weeks).

    The nice DisabilitySA guy told me what had happened is that they had rang the agency who had contacted and arranged things with me.. but that agency had been too expensive and I wouldnt have gotten my normal 5 hrs home support per week so they had to then go throu a different agency (it was all about their budget..obviously they werent willing to give more funding so I could go throu that agency). Anyway.. all this dont help me any and so Im still waiting, waiting, waiting with not enough support for the standing jobs eg doing dishes which I cant do without flaring the POTS and possibly causing a collapse. No support to get to any appointments etc etc.

    I would of starved by now had my boyfriend not been coming twice a week for a short time to take me shopping... and pay urgent bills etc. I cant go to the shops alone as I too often get sudden collapses with the POTS etc.
  5. taniaaust1

    taniaaust1 Senior Member

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    Im still trying to sort out the transport issue to get to my doctors appointment. Ive rang http://www9.health.gov.au/ccsd/usr_general/gen_home.cfm today (1800 052 222) asking for help. The lady on the phone was nice but said that DisabilitySA should be helping me with this **Sighs..I know that..everyone keeps telling me that but what does one do when an gov support org refuses to help in an area?**. She told me to speak to them (Ive been telling them for over a year now and begging for help to medical appointments for over a year..well 2-3 years to be more precise). She asked me if they'd given me a case worker so I told her what they told me just before my move..that they'd think of giving me one after I moved (which they havent.. Im still dealing with whoever is the duty officer for the day.. thou the guy there is nice..he has no solutions to getting me to the medical appointments I need).

    She's told me to ask for the DisabilitySA team leader.. so I'll be doing that next. She said if I then dont get anywhere.. To ring the Disability Advocate (83404450) and get them to deal with DisabilitySA.

    She's also suggested ringing my local council to ask them about transport options. She went to their website and tried to find out for me but there was nothing on the website on this. Thirdly she's suggested to ring the red cross (8100 4550) as they have volunteers for taking people to appointments (but she told me they were full so it looks like it is unlikely i will be currently able to get help there but I'll give that a go).

    There is also thou I dont know if it would be helpful or not.. a complaints resolution and referal services (part of the disabilty services).. maybe they would be able to refer me to somewhere to ring if these other places dont work out.
    Valentijn likes this.
  6. taniaaust1

    taniaaust1 Senior Member

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    update on my latest saga to get to a medical appointment

    **fingers crossed this is now sorted thou its way expensive.. im waiting to hear back if its sorted and if it is sorted, it still may not work out..going to play it by chance**

    I rang the red cross and she said (another nice lady) to try ringing the local council first and then get back to them if I didnt have any luck and then they would attempt to get a driver for me. I asked them to book me in anyway and that I'll then just cancel with them if another option is going to work (seeing my appointment is on Friday and the sooner Im booked in the better) so she did that.

    She put me onto someone higher up there when I told her that I cant be around some perfumes.. she also told me it was their policy to have air freshener in ALL their red cross cars so for a moment I thought there was no way this is going to work due to my MCS but it turned out that the air freshener is a spray natural orange one, so that will be fine.

    Big issue thou is that they have others they pick up in the car at the same too.. so I will be in an enclosed areas with perfumes :confused: on others and if someone is wearing one Im going to react too.. Im not going to even be able to get into that car. (If that happens well that is one thing.. I just then cancel my medical appointment just before Im supposed to be there.. my major concern thou is..what if that occurs AFTER my medical appointment.. and I then cant be in there to get a ride home... in this case Im going to be stranded with no suitable way home at all). This is very stressful. (last year I had a collapse and was left not able to walk at all after getting into a car in which somoene was wearing a perfume I reacted too.. I was only in the car for 3mins but it left me unable to walk. I had to be left on on the ground on a side walk (where the driver helped me too off the road) while the support service I was with...rang for another car and driver).

    The other issue with the red cross is going to be the cost. I have quite a few specialists and the trip for Friday.. sounds like its going to cost me well over $60 due to the fees to get there and back for the transport cost (paying like the cost of petrol but like double that cost again). On top of that there is an annual fee (but the annual fee cost isnt that big). At that rate relying on these services, I wont be able to get to my specialists as often as I need too but Im more worried about the perfume exposure due to the way they run this service and it making me quite ill or collapse.

    When I rang the local council as the red cross suggested.. the lady there couldnt figure out why the red cross told me to ring them. They only take clients who need short term transport eg a few times after an injury and getting out of hospital and dont take on long term clients themselves. (they do thou take on the red cross clients if the red cross is full but that is arranged thou throu the red cross themselves). They stated thou that they were booked out for the first time ever.. on Friday when this appointment is. **just my luck** so if the red cross does need to ring them to fill in for them.. they wont have anyone able to help.

    Direct phone numbers to red cross transport service I was just given : 8100 4586 and 8100 4587

    Now I just need to wait for a phone call back from the red cross today to say they found someone to do it.. and then just pray that no one will be in the car wearing perfumes which have chemicals I cant be around. One reason I know my health has improved some long term..is the fact I avoid perfumes.. too many exposures will take me back into a very bad place.

    I just rang DisabilitySA back again.. and asked to speak to their "team leader" like the commcare place told me to do. Team leader isnt in and they just want to put me onto the "duty worker" yet again.. and get the duty worker to pass on the message to the team leader. Anyway..they said they'd get the duty officer to ring back.

    If my head wasnt being with it or I was sicker right now..there is no way I'd be able to be making all these calls.. trying to get the help I need. The whole disability system sucks... esp when the states disability org say they cant help with important certain things while not even helping one then find out who one should be ringing then to get support in those areas. If they cant help themselves..shouldnt they then be giving people the names of the orgs or places to phone who may be able to help instead??? Instead of making it so the disabled and sick who also dont have a clue, has to ring place after place trying to find places who do this and may be able to help.
    .....................

    edit. DisablitySA just rang me back (the duty officer again).. and this time they claim they never knew I had issues getting to appointments!! Its extremely upsetting them saying that as ive spoken to the various ones there many a time.. telling them that is a MAJOR issue I have and now they deny knowledge of my situation. (Ive been telling them that all along but cause they never give me a case worker.. seems it was never put on my records there!!). Ive cried to various of their workers at times over this situation of not being able to get to appointments, I even had someone from there tell me I SHOULD move to the city due to my issues getting to appointments.. well I have done just that now and I still have the issues.

    If they gave me a case worker from the time I became thier client (2 years??? I became their client but they didnt give me any support at all for about a year.. not even home support!!. I was a client of theirs in name only for a long time). Maybe they would have some idea of the MANY life issues I face. I cant believe I just was told they didnt know I had issues with transport.......are they even keeping records on their clients??

    I personally think what is going on with me with dealing with gov agencies who almost ignore those who have ME/CFS (Im sure if I had MS I would of been given a case worker from the start).. this shows we need to be getting EVERYTHING IN WRITING and we cant trust what we are telling them is being noted down in our records at all. It appears now that they can sort the transport thing out but its going to take a long time to do (after years of being told they couldnt help.. and now denying they knew I needed that. They probably are saying they can do that now cause now I know they can and are on their bascks about it due to OTHER
    places telling me that DisabilitySA SHOULD be helping me with my trasnport to medical appointments).

    I had the same situation with the Mt Barker Mental Health when I was depressed and suicidal in the past.... they wouldnt help me (wouldnt give me any counselloring or support.. I ended up like going private thou Im on a pension) and kept denying my requests to become a client there (they even wouldnt after a serious sucide attempt) as they dont see "CFS" people who are having severe sucidal mood swings but dont have diagnosable depression (which I didnt have).. then later they denied they had ever knocked me back (that was said when I brought up a complaint about them to another agency). I had been dealling with them via phone.. and no proof of all the knockbacks even thou I had suicial mood swings at the time going on. I even rang them one time at the main city hospital on discharge as hospital was recommending it..but once again told they wouldnt help me. Three knockbacks over and over by the same gov agency..who then goes and later denies that ever happened and gives false reasons for the knockbacks eg they said another agency was helping me.. thing is I'd applied everywhere for years trying to get help and EVERYONE was knocking me back.. the other so called agency helping was a very very temp thing while another one didnt even take me on and rejected me too.

    Thank god I dont know have mental health issues nowdays going on.. shocking services.. rejections due to one not having "common" mental health issues but rather ME/CFS and severe mood swings (that arent bipolar.. if I had bipolar they would of helped my suicidal mood swings but rather mine were hormonally induced so they didnt give a crap that I was sucidal and needing help at the time). (Anotehr case of you are ignored if your issues arent common, no matter how serious those issues are).

    Im thinking they are only going to try to do something now (DisabilitySA) as Ive been complaining to the other orgs that I cant get transport and it was their responsibilty to try to help me in this manner all along (according to the other orgs).
  7. taniaaust1

    taniaaust1 Senior Member

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    Red cross has ring back and they are going to take me to Fridays appointment (thou it will cost me a lot for the transport fee). Im happy Ive finally got some transport sorted thou it took ALL day to sort out with ringing agencies/orgs (and a couple of days before ringing others I know and family trying to get a ride from them). Its sooo hard work and so much stress every time I need to get to medical appointments (if my boyfriend isnt around to take me).

    FINALLY found my medical file too (that was lost for a while in the move and no doctor has got all my test results as Ive never found a dr to coordinate my medical stuff and specialists etc).

    Ive been working out what tests Im going to request to be done on Friday and have now come up with these tests.
    - lyme (the doctor Im seeing has some lyme patients and was recommended by them)
    - Chlamydia pneumonia (cause of the reactiving cough I get). I previously thought I had been tested but I just found out Ive never been tested for it.
    - Mycoplasma pneumonia and hopefully I can be tested for all the mycoplasma stuff while im at it... (M. fermentans, M. hominis. M genitalium. Ive love to know if I have that common ME issue or not of Mycoplasma). (seeing this dr treats chronic lyme disease, hopefully if Ive found to be carrying one of those that she'll treat it properly).
    - CD-54_CD3 subsets (suggestion of someone who has lyme.. so i guess issues show there if one has lyme)
    - CMV reactivation (I carry CMV but never had reactivation ruled out at all).

    Anyway..hopefully it goes well at this new doctors thou its going to cost me heaps (Im going to have to probably borrow money to get the lyme test done).
    merylg likes this.
  8. taniaaust1

    taniaaust1 Senior Member

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    Today Im feeling quite stressed over this afternoons appointment. Still wondering if Im going to be able to get there.. what if one of the others in the pick up car is wearing perfume which is going to make me sick and I cant take the red cross transport there due to it. Im starting to feel sick over it thou Im trying not to think about it. Trying to live via luck and just hoping its going to turn out.. probably isnt a sensible thing to have done.. its like Im rolling a dice.. hoping for the best .. but with a good chance (50%) Im not going to be able to get into the car to get to the appointment and will be having to cancel out on the new doctor at the very last moment (if that happens I can only hope she wont mind). I probably wont do this again.. its all too likely not to work out and leave me quite upset then when it doesnt (or sick or collapsed from perfume). Its too stressful not knowing if its going to work out or not cause its likely not to... gambling like this on outcome with odds like this isnt sensible (but I was desperate to get to medical appointment).

    Please send some good thoughts my way.. I need some luck today. Trying to focus on the 50% chance it may end up not being an issue.
    madietodd likes this.
  9. Lynne B

    Lynne B Senior Member

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    Tania,
    I've just caught up on your transport and other problems. What a bummer! My advice, for what it's worth, is keep a file of your own of every treatment from every source—get the doctors to note on the blood test requests to send you copies. The information is yours, you are entitled to it, but you must get the doctor to order it in the first place.

    When ringing organisations, get the names of the people you talk to on the phone, even if it's only their first name, along with dates of contact and what's been suggested or decided. Note it all at the time or soon after you've recovered from the call.

    Put all this information into one folder and take it with you on every appointment, refer to it to refresh your memory before you go or before you contact anyone. Sometimes you may even find in it suggestions you haven't yet followed up.

    In your new suburb, check out any available sources of help, perhaps through the council, and keep on checking from time to time.

    I don't know how far you are from the city centre, but how much would it cost to go to a particular doctor or specialist in a taxi or hirecar?

    That's all I've got for now, but above all, for today,
    Good Luck!

    Lynne
    Valentijn and taniaaust1 like this.
  10. taniaaust1

    taniaaust1 Senior Member

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    Todays Drama at Doctors

    A lovely red cross person came and picked me up.. I was so so relieved to find he hadnt others in the car and that there was no perfume/deoderant issue with him... So after a stressful wait for the driver to show up..that fear went unfounded.

    We got to the doctors and there was a bit of a wait.. I had to change chairs several times due to those coming in with perfumes I was going to react too. After quite a wait, I ended up being called into the doctors clinic and after being in there for a short time but then she got a phone call and due to that, said she had to see another patient who was quite sick and who had to be sick and would I mind going out again and waiting while she did. :eek: What could I really say to that??? I did tell her I had a red cross driver waiting for me.

    I really wanted to be telling her how hard it had been just to wait as long as I'd already had but didnt want to make myself sound like I was being selfish by saying "no you need to see me first" and besides.. not many understand how hard it is for us anyway. So i left the room while she then went and took in another patient instead.

    Im sitting out waiting.. getting sicker and sicker. Ended up grabbing one of the clinic chairs to put my feet up on.. then ended up laying across two chairs.. but still was getting illner and illner.... at the end I was struggling to stay half laying/half slouched in a chai. I got up to go to the loo and went down onto the floor, picked myself up ..went to the loo and went down again.. got back to the waiting room (staggering by that point) and by that time couldnt even safely judge something to sit in a chair.. so went to sit. toppled over and ended up on the floor again. By this time I was a trembling, sweating mess... so on floor gripping the legs of a chair, while shaking like crazy. At that point I was feeling so sick that I then started to cry.

    People went into action to get help for me but at that point the dr walked out and saw me shaking on the floor so quickly came over.. asking if I needed an ambulance. My reply was "no way".. Ive had too many bad experiences at hospitals and its best for me to avoid them.. they never know what to do with me anyway, they know nothing of MCS or POTS.. and I didnt need more perfume exposure..eg nurses wearing perfumes.

    So the doctor and another helped me up off the floor and into the room to the bed ..and she then monitored my heart rate and BP (from the beating of the monitor I think I may of been in tachycardia) and was asking me again if I wanted to go to hospital. After a while things settled and I was able to sit up (with legs up) and continue my appointment fine.

    The new dr was lovely.. she listened and asked me what tests I wanted done and handed me quite a bit of info on lyme and the various coexisting things to read when I was in the waiting room (before I'd collapsed). My cough which was brought on by having to move house and which Ive now had for about 3 weeks.. sounds like she thinks its asthma and she's prescribed me puffers for it. Hopefully that will fix my chest which has been feeling uncomfortable for the past few weeks.

    She's given me the blood test stuff but she told me not to get it done there today as she thought I was too ill to be having blood tests done today (they had a blood part there), I agree after that horrible collapse that. Im probably too ill to put my body throu blood tests today so they'll have to wait (with the others from my other doctor which were meant to be done first week of Jan but are still waiting to be done).

    She looked at my skin looking for signs of things and found some things on my back which she said could indicate that I also have Babsia (i think ive spelt it wrong..coeexister of lyme).. she wasnt sure if i had scratch markes on my back or the indication of that. She took some photos and showed me the marks on my back.
  11. Sea

    Sea Senior Member

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    Tania is it the inhaling of perfumes that is a problem for you? Is it possible to get a chemical mask to filter them out so that you are not exposing yourself to that risk when you're out?

    Glad to hear that the doctor was nice, I hope she can help you
    Valentijn likes this.
  12. taniaaust1

    taniaaust1 Senior Member

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    For anyone wondering about what I said the other day about Dr David Mitchell saying they are only allowed to do 3 blood tests at once now (or you have to pay the rest). The new doctor said the same today. She said it was to do with those doctors who like to do a lot of tests.. the alternative kinds of ones.. the gov has had a crackdown on them and how many tests they can do and be covered. This new policy is in now. (sorry I didnt ask if it was just for SA or if it includes other states too)
    merylg likes this.
  13. Lynne B

    Lynne B Senior Member

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    Tania, sounds like you had a big day. (It's babesia, by the way, infection from ticks, just like Lyme, as you thought.)

    I'm not as badly off as you from your account of your waiting room horrors, but I try to remember to stick to a few rules, namely, always taking water and food with me to help during long waits. Also I try to get up and move around before things get too bad from sitting for too long. You might even be better off sitting on the floor with your knees up than in a chair. In addition, my feet have been swelling and burning so much over summer that I'm seriously considering taking a small cold pack in an insulated container to put my feet on if things get too bad.

    But, like you, there's no way I can stand in queues for long or sit too long, so I lounge on any available bench or stand, or keep changing from one foot to another. If someone else is with me I can leave them standing and I've even sat on the floor sometimes. It's hard, I know, to try to do small things to alleviate the strain when you don't want to seem peculiar, but then people generally seem to want to help when they realise something is really wrong. It's hard to signal this before you collapse in a heap but we really have to be prepared to do it. (Talking to myself here as much as you!)

    Anyway, I'm glad you had a car to yourself and it's great that the doctor understood, and I hope you can do the blood tests soon.

    cheers, Lynne
  14. taniaaust1

    taniaaust1 Senior Member

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    Im feeling a bit better today so will give more details today (wasnt feel well enough to post much yesterday).

    The tests which dr put on a pathology form for me to get done re cough for weeks and all my other issues are
    - Chlamydiae Pneumonia titres, pertussis titres (she said whooping cough is going around right now), resp viruses
    - FBE/ESR: E/LFTs carnitine -total, free and acyl, TFT B12 folate, prolactin, dheas, ASOT, ANA, lactate CK influenza tires, IgE, RAST-wheat, milk, iron studies (non fast), testosterone, free androgen,LH, FSH
    (hopefully I arent charged for some of those tests as they are more then she's supposed to do.. the gov. is cracking down on integrated doctors here and limiting the number of tests they can request from a visit).

    On top of that I will be paying $410? i think it was to get the lyme test I wanted done (whole blood and also urine test). I need to pay in advance so will be arranging that soon.

    I also told her about how my hair analyses in the past had come back extremely high and she thought that is due to me having the MTHFR polymorphism. She said something about those with this can build up copper. So I then asked her about a heavy metal challenge test to see if I have definately got very high copper stored in my body or not (copper doesnt store in blood so normal blood test dont show true copper load in the body). She said she can arrange a heavy metal challenge test in a future visit. (Im quite impressed with this doctor.. her knowledge of things was very good).

    My chest which has been an issue for the past 3 weeks is feeling much better today due to the salbutamol the dr yesterday put me on. I seem to be coughing less too.
    ....................

    This morning.. at about 5.30am I had to ring the out of hours doctor as I had something crawl into my ear while I was asleep and woke me up.. it was moving around inside my ear. It was freaking me out as I didnt know if it was a poisonous spider or what (Ive had a couple of whitetail spiders in my new house so far) and wasnt game to try to start poking anything in my ear or even put my finger in it, in case it was a spider. So I rang the out of hours doctors (after ringing my local sister at 5.30am asking her what should i do as I didnt even know the out of hours doctors around here). The out of hours doctor home visit people said they had no home visit times available till this afternoon :eek: , so advised me to ring the 24 hr health advice line so I did that.

    So anyway.. here I was at 6am freaking out over what is in my ear... pouring oil into my ear with not knowing what was moving around in it. Its turned out to be an ant. My house due to not having any home support yet like I was told I would, reassured before I moved.. and having dirty dishes on my sink all the time.. well the house now has an ant issue. I even got bitten a few times since Ive moved in while sleeping with ants waking me up (cause currently my mattress is on the floor as my bed got broke in the move and I dont know how to get it fixed. (it needs welding) sighs.. so now its got to the point where Im ringing for a doctor to come out at 5.30am due to the issues the mess has caused me.
    ...................................

    DisabilitySA AGAIN yesterday (victor office).. to tell them that the home support agency they've arranged for me STILL hasnt even rung me. I had to ask their duty worker and thou she was very nice, she tells me that Im expecting too much as it hasnt been long yet and as Im not in a wheelchair or bedbound the time Ive been waiting is reasonable. Now here is what has really made me angry.. she goes on to tell me an application got only put in for my home assistance THREE DAYS ago and hence the home support agency they are putting me onto dont even have it yet. Then she goes on to say that it must get approved first. (I'd like to know why as Ive been a disabilitySA client for a year and have been needing and getting the home support for this time till I had to move house).

    The guy Ive been dealing with there told me my contract was given to the home support agency a couple of weeks back!!! .. that was after the wrong home support agency came out and interviewed me cause they thought DisabilitySA was giving them the contract. Has the guy whos been dealing with me from DisabilitySA lied?? what on earth is going on?? Why did he tell me all that and now this other there goes and says the contract hasnt even gone to CSI (community support incorporated ) yet?. and besides I do not think it is reasonable to leave anyone who cant do standing jobs eg dishes, nor even leave their house alone without someone to accompany to do important life things eg to go shopping.. THREE weeks without any home support given for those things. (I was even without the very basics during the first week Iwas here.. no milk, no so many things I needed and no gov support I'd been assured would be arranged fast. I couldnt even have my nightly hot chocolate which helps me to sleep, it truely was a miserable situation..

    then the DisabilitySA people each time I ring them ask me are I happy in my new house as if I should be when things are like this :confused:.. well its been a nightmare due to the lack of support!!! ). At least now I have found the sheets so actually have got sheets on the bed!!. I should be enjoying the new house and in joy about it but instead.. all I have is a load as stress while I struggle. All Ive been left with is broken reassurances and lack of support. Oh the other thing.. DisabilitySA Victor branch hasnt as yet transfered my file over to my local DisabilitySA branch but say they will do soon (makes me wonder why??? are they trying to hide something??. This is the agency which unreasonably knocked back support for me for 2?-3? years before finally approving me in the first place..the reason why I was originally knocked back I believe was due to me having ME/CFS, it wasnt based on my capablities at all which were even lower then they are now back when I first started applying). So Im not surprised Im being treated poorly now.

    I blame the lack of support on why I ended up having to ring out of hours doctors in the wee hours of the morn due to the ant in my ear !!! due to the mess the house has been in.. ants probably going to be so much harder to get rid of now.. after they've been living it up here for weeks. (ant rid isnt working as there has been too much mess). Gov agencies do not recognise that ME/CFS patients can have high needs.

    I need a high up advocate stepping in and finding out why DisabilitySA is taking soo long to arrange the support I need and why they've told me diferent things about the home support org and the contract there. Lies?? or are they making genuine mistakes in what they are telling me? I also want to know is it true or not that they cant arrange for those who need to get to medical appointments but cant in other ways.. to get there??? Ive heard different things there too so wonder if Im being treated discriminatory due to ME/CFS but have no way to find out. (If a had an illness they more recognised and were needing to get to specialists.drs for it.. would they then organise it?? discrimination?? or is it just an issue with our whole system here no matter what medical issue?
  15. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    I'm glad you survived the waiting room (more or less), and it looks like the doctor is running some good tests :) Hopefully the support agency gets its crap together ... with their history of delay, I think CYA emails are a good option for you.

    CYA = Cover Your Ass. Basically any time you have a verbal conversation, whether on the phone, at their office, at your home, etc, you write them a letter or email politely thanking them for taking the time to talk to you (listing the date of the conversation), restating what was said, and restating what you expect from the meeting. No new information basically, just an excuse to create a written record of what happened, with a date stamp attached. Then it's a lot harder for them to pull the usual bullshit and engage in delay tactics by claiming "you never said X" or "we didn't get info about X until Y".

    A CYA letter also hints to them that you mean business and that you WILL follow up on things, even though you don't explicitly say so.
  16. LucyS

    LucyS

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    Hi Tania,

    I hope things have settled a little for you since what sounded like a pretty horrific Friday!! Just curious as to how you're getting on with David Mitchell and his regime, and very curious as to who this new female Doctor is you saw?? Are you happy to share her name and where she is? She sounds pretty amazing, certainly clued up!!
    Thanks and take care,
    Lucy
  17. taniaaust1

    taniaaust1 Senior Member

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    Fridays event unfortunately was just really a normal kind of event for me if I stay upright when I need to lay. The reason why I dont go out much and wont go alone.

    Lucy.. the female dr I saw who I'd recommend if you are needing more tests done (she's very smart!! I dont know if she's a CFS specialist thou, I didnt ask her views on CFS, she thou say anything bad when I mentioned it) is Dr Belinda Coyte. She works at the drs clinic in Melrose Park and at another place too not far from there. She's quite easy to get into.

    Im so glad she's given me an asthma puffer thou originally I hadnt thought that would help till I tried it. My chest is better now with it and the cough is nearly now completely gone too (im still needing to take it occassionally thou).
    ......................................

    Update on the services saga
    Ive today ended up ringing myself CSI (community support incorporated) instead of waiting for a phone call as the person (guy) at DisabilitySA kept telling me they'd told him they'd ring me (something Ive been being told for 2 weeks). And that last person I'd spoken to at DisabilitySA (the female duty officer) turns out she gave me the true facts.. that my home support was still being approved for a new agency and in fact CSI didnt have my contract yet like the other guy assumed me they did. He kept blaming CSI for not calling me whenever I asked what was going on. So this other has been lying to me all along.. why I dont know?? (maybe it was some kind of test on me??? of how sick I are and if I really reallly need the services or some bullshit thing??)

    Anyway .. all I can say to everyone is GET EVERYTHING IN WRITING when dealing with this states disability services or any other gov depts as one so often gets told bullshit otherwise, people lie.

    I had the housing trust agency give me wrong info too twice last week due to their stuff ups.. ringing me up and not having their facts right and stressed me out. (Im wanting to insist they do letters to in future). They rang and told me they'd been sent the electricity bill for my "last" house... Im like What!!! cause I'd paid it. To confuse matters further the electricity company they were telling me I owed money to was a different company to my own. I struggle heaps on phones and all this on a phone.. well it was stress as I struggle to often understand on phone in first place. I ended up having to ring my boyfriend to sort it out. Turned out it was someone ELSES bill but obviously the gov housing agency hadnt even checked the name the account was too.

    A few days before that.. they ring me up and tell me I own them money for the bond to my new house.. again Im like "What!!" as I was told I had to pay that before I moved in a few weeks before and had to get someone to take me to the post office to pay it and did that.. that was the condition to me geting the keys. They then confused the heck out of me on the phone.. The call was so draining on me that I lost my ability to make sense of sentences in the end and had to hang up before it got sorted out.. I asked them to ring me back the next day but then WITHOUT MY CONSENT (they had his phone number still from all the shit he's had to already sort out for me), they rang my boyfriend about it.
    turned out the money wasnt even for what they told me it was for..

    Would it be unreasonable to say I dont want the gov housing people to be contacting me by phone??? and instead if they ever had any issues please write to me instead??? Do I have a right to insist they dont ring me when I rent from gov housing agency? I can make sense of things when they are put to me in writing (maybe they would then too be more careful of the facts of things rather then saying incorrect stuff over the phone). I have no hope of sorting things out much of the time in the telephone..and Id rather be handling my own affairs when Im able to be.

    Im currently emotionally and mentally exhausted from all the crap which has gone on.. soo wish I could have a holiday. Cause Im so very drained in those ways now.. its now affecting me physically and taken away my motivation to be doing anything at all so everything is being even a more effort then the big effort it usually is to start with.. (I just want to run away frm things). Its causing me now to stop unpacking things.. so now everything just sitting with nothing being done.. while im struggling to just get throu my day ok with doing bare minimums (if one can call it that.. cook, sleep, shower and try to look after my emotional health which now needs looking after or Im going to end up crashing there). Ive had far too much stress put onto me the past 6 weeks and now im feeling like im 80-90 years old.
  18. Lynne B

    Lynne B Senior Member

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    sydney, australia
    Tania, Yes, damn it, tell them to write to you in future! And maybe suggest they check their facts before they do. And if you need to take the day off, then take the day off! Take two days off...

    Enjoy yourself for a change,

    Lynne
    taniaaust1 likes this.
  19. Lynne B

    Lynne B Senior Member

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    sydney, australia
    On second thoughts, maybe asking a department to write, not phone, might slow their service delivery process even further. So perhaps it would be better to stop them right at the start of a call and just check that the issue they're calling about concerns you and not some other person and that their file is up to date before getting into the reason for the call.

    One thing I learned when working in film and television was that even work done by very prestigious production houses could contain important errors and that you could never take the quality of the work for granted. Everything had to be checked at the beginning before accepting anything.

    Sorry, I was feeling reckless yesterday...

    Lynne
  20. taniaaust1

    taniaaust1 Senior Member

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    CYA letters :) .. I like that.

    The issue with that is that cause DisabilitySA has always refused to give me my own case worker like many there have thou Im a client.. it means that Im supposed to be dealing with whichever duty worker is on that day (and different people always say different things).. but not having my own case worker means I dont have an email address to be dealing with them (I dont even know if DisabilitySA has a general email thing to be doing emails like that).. hence why I was trying to type DisabilitySA a letter TO POST (but then I have the issue that I cant get to post offices without someone to take me). But yeah...otherwise what you said would of been an ideal thing to do.
    ............

    It seems to be sorting out now... my boyfriend has rung them and the guy told him it was now sorted (im not trusting things yet to I see it is). My boyfriend to further speed things along rang the support org like I did the other day but this time instead of saying there was nothing which could be done right now, they made an home appointment time to come and see me (Friday Afternoon).

    Unfortuantly he didnt give them all my details (and Ive no doubt that DisabilitySA hasnt either cause they always get it wrong) and I was too unwell at the time to be able to get on the phone and talk to them, so Im not sure what is going to happen as they told him they'd found a worker but i dont think they were aware at all of my perfume (MCS) issues (and probably not aware of the other things too).. and that whoever comes is going to have to not be wearing perfumes or chemical deorderant or have any air fresheners in their car. I truely do not want to have a second collapse this week!!

    My boyfriend has since rang them twice trying to get clarification that they wont be wearing anything to set off the MCS (or mast cell issue??) but kepts hitting an answering machine. So Im now stressing out about that :( .

    The Red Cross too is currently trying to get hold of me for some reason but Im having no luck in returning the calls back as I hit their answering machine (or they are ringing me while Im still asleep or in bed). I think the Red Cross is trying to get in touch with me to either offer me discounts with getting me to appointments or things have gone the other way and they want to cancel my membership and return my fee (after my collapse with them the other day with dr wanting to ring ambulance in front of their guy, they may of been deemed too sick for them to be transporting which Ive been told can happen).
    Valentijn likes this.

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