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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

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    Hopefully as that is one of the main reasons Ive contacted the complaints advocate for.

    As Ive only lived where I are this year and are homebound except when taken shopping or out to get something important, I dont have any idea what groups are around here. Ive no idea what churches are here etc (I actually havent even seen a church in my suburb).
     
  2. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Maybe your advocate could tell you. ;)
     
  3. taniaaust1

    taniaaust1

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    Update

    The hospital rang me today again and confirmed my appointment on Monday with CFS specialist re the study Im in.

    Helene (DisabilitySA) also rang today to let me know that my wheelchair application which had been put in, has just been approved and it has actually been granted a "critical" status. (maybe those who had to do the approval were more knowledgable of ME/CFS?, unless they actually based it on how I are for once and how often I collapse?. Maybe Helene finally returned my support workers phone call re my collapses and found out just how bad things are?).

    I remembered for once to ask her about if my cane chair can be fixed but was told they only fix disability aids they themselves have supplied and cant fix ones I've myself brought (so I'd still like to find somewhere in which I can get disabililty aids fixed). I also mentioned my garden issues and she gave me two places I could call and see if they can help.

    I forgot to ask her thou what is happening with my contract re unpacking support (the one in which I only got 2 out of the 6 hours which were supposed to be allocated to me and supposively, according to the support agency, being redone..but DisabilitySA hasnt mentioned anything about this since the contract expired without me getting my hours.

    She was nice on the phone and asked me if I'd called out a doctor for my cough after asking me how it was. So I explained to her once again, its to do with my ME/CFS and I dont want to see any doctor who isnt aware its a reactivating viral thing to do with it. Hopefully somehow Im getting throu to her (this time she didnt give me the "CFS doesnt cause that!" thing).

    She also said their the occupational therapist will be seeing me to give me ideas around management (umm that's going to be interesting, I wonder if the OT will understand ME/CFS and give good advice. Last OT I saw years ago did me harm by bad recommendations after I'd been long term bedbound for a while.. It was like I tore something trying to do as she suggested, trying the very first thing she told me to do and then spent quite a few days in pain)
     
    madietodd and Valentijn like this.
  4. taniaaust1

    taniaaust1

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    The ME/CFS Study, an appointment with ME/CFS specialist Dr Richard Kwiatek

    After my grandsons 1st Birthday on Saturday (I was soo happy to get to this one as I missed my other grandsons family 1st birthday party due to not being able to get a ride there), my sister took me back to her new place to stay the weekend (as I had no way to get home) and I had an appointment re the ME/CFS study on Monday. It was great as this was the first time Ive got to see my sisters new home thou she moved in there several months ago.

    I had a wipe out at the party on Saturday and ended up so sick I had to go to bed after 2 hrs so missed rest of party (I couldnt last 3 hours it went for). The next day both me and my CFS sister were wiped. She was too sick to go to church so her hubby took her kids there and her and I slept till the afternoon trying to recover from that party the day before and then we both had to laze about once we were out of bed (her hubby trying to do all the work), not able to really do anything much (I did help her with dinner that night).

    By Monday, I had my energy back (thou woke up with some body pain and stiffness but it went away once I got moving) and my sister was finally feeling better too. She dropped me off at the specialists and after a 30-45min wait, I got to have an appointment with Dr Kwiatek for the first time.

    This was very interesting as seeing I was there for a research study and not there for a medical appointment, he was able to say what he liked and he was telling me how he is very restricted in what he can say being a specialist (he's a rheumy) when he has patients due to the medical board. He said that GPs can say a lot more but he has to take lots of added care under normal appointment situations due to being a specialist. So under the research situation, he got to openly share his views with me.

    I got to listen to him say so many things which I myself often tell people. It was great. I just sat there listening, happily for once that finally I was chatting to a doctor/specialist on the same wavelength as me about so many things to do with our illness. He told me that the Adelaide CFS specialists tend to be conservative over here then in some of the other Aussie states (something I sure know already), told me how the name CFS has messed things up for people, , he said a big issue with ME/CFS is cause it hasnt been given its own medical speciality to go under, hence our issues with getting doctors and that why it didnt have its own speciality was cause the CFS people were all different groups coming under that.. (I hope Ive said nothing here which could get him into trouble, anyway, he was very well aware of the issues surrounding CFS). I wish I'd remembered to ask him exactly what he thought of ME verses CFS.

    I'd love to have this specialist as my doctor (but unfortunately he's a rheumy and I dont anymore get FM) but its sad that if he ever become my doctor, he wouldnt be allowed to be being open with me about his true views of the illness and off all the issues which go on around it.

    Anyway. He said my case was an interesting one (all ME/CFS specialists tell me that), he said i was different to most of his other CFS patients as he's commonly found the POTS subgroup of us is. He went and rang the "pathways" person when he heard I dont have a doctor at all (he completely understood about me not having a doctor as that was one of the things he'd spoken about, how ME/CFS patients cant find good doctors!! He understood I cant go to anyone) and mentioned me to her and Im going to ring her back and have a convo with her about things again, (she's trying to arrange a group of doctors where I are, willing to see ME/CFS patients and learn about the illness).

    I wasnt expecting him to do any testing at this appointment so wasnt really prepared for that. (I went on my best after resting ALL the day before). He did look at my BP and pulse but I'd done what I'll call watering up (waterloading) to get me throu the appointment okay so nothing was showing (other then me having to go to the loo 3 times while there due to how much I'd drunk). He then did a memory test which he said was a proper memory test (I wish he'd done that off my drugs and while I wasnt fluid loaded). With this test he showed me 50 pictures each at the rate of 4 seconds each and after that I was shown pages with 2 pictures at a time and I had to pick which picture was the one which I had previously been shown.

    To my surprise I found my memory good in that area (but give me a number or a name to remember or say a name of an object to me, I forget) .. but visually my memory was good there. I did thou find that if I didnt stop to think at all, the test was easy (just immediately guess the answer and the guess was always correct even if I had a lot of doubts) The moment I stopped to actually "think" I'd end up feeling confused and start to wonder which picture it was I'd seen before. Amazingly the first time I did that test I got 43? right and the second time I got 50/50 (as the same objects were shown). I even put my legs down the second time, trying to trigger off the memory issues I so often have, but they didnt happen. (Unless our visual memory is less affected then other kinds of memory???).

    I did ask Dr Kwiatek if he could help with educating the states disability service and help me with that, but he said I cant expect them to know about ME/CFS as they are not medical people. He said its the medical profession who needs to be educated and which he has been trying to educate.
     
  5. taniaaust1

    taniaaust1

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    I just posted the following on an OI thread where someone asked about abdomenal compression garments and thought I'd post it too in my thread seeing I just also took a photo of the result of this for the other thread.
    ..........

    my skin is STILL trying to recover from a week or two ago of wearing an abdominal compression garment (Ive worn it one day a week for about 8hrs for past few weeks) ... I just took a photo to show how my skin is looking right now due to the garment last worn on Saturday (and then once the week before that). That horizontal scar looking line is from a half a finger length sized blister 2 weeks ago from the garment. My skin is very sensitive (sighs, like everything else of my body), Ive got blisters at times from my compression stockings too esp in summer when I sweat. As Im not even wearing the recommended compression for POTS and having this going on, its looking like I'll need to have my medical compression stockings specially made :rolleyes: (I do currently have them properly fitted but have the issue with those).

    I STILL got severe POTS while wearing the compression garment and lasted only two hours at a party where i was mostly just sitting before I had to leave the party area and go and lay down due to the POTS (and flare up of ME viral reactivation cough).

    anyway.. here's what my skin is currently looking like due to that compression garment (note there isnt even a seam running in the area which blistered from it).

    [​IMG]
     
  6. taniaaust1

    taniaaust1

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    Update

    Thou I really should of been resting yesterday (today Im at high risk of a collapse while my support worker is here cause I didnt rest yesterday) but decided to sort out some of the phone calls I needed to make (as that REALLY needed doing). Cause I didnt rest yesterday, my cough was worst again last night after having the first night the night before, in over 2 weeks in which I wasnt woken at some ungodly hour due to coughing fits..

    I have wrong gear which has been sent to me which wasnt as Ive ordered which has now been here for 6 weeks unsorted out, I have ordered supplements which havent arrived which were supposed to be here approx 10-14 days ago (I didnt get that sorted yet), I have had my printer pack up (it was going to cost to fix the same as what a new one costs to buy) which I need as I often print off things to give to people who im having to deal with illness wise and often are printing off letters. A new printer has now been arranged, I was having to use my support time to get my worker to take me to library to print stuff last week, I have countless other phone calls which need doing re stuff Im needing or medical stuff to sort out.

    I rang Cathy (the one Dr Kwiatek rang the other day about me) from Bridging and Pathways (which helps those who have Chronic Illnesses and those who have severe ME) and chatted to her yesterday and then did a follow up email which left me exhausted and had to go to bed at that point. She's rather concerned that I arent getting to my specialists, have no monitoring for all the things Im on and dont have a local GP and said she will help me find one and doesnt mind advocating for me to DisabilitySA. Im hoping she'll help me get the extra support put into place quicker (Im still waiting for them to start what they've said they would do) by helping Helene understand ME better. Im really hoping too that she will help me to get more transport then just once per month to one of my specialists once that it is put into place.

    The hospital rang me yesterday re the study and wanting to book the dates I go back or have study things done, we've made tentitive dates as I want to have another hair test done before I go off my drugs and supplements which I need to be off of before going further with the research studies. If all goes to plan I'll be stopping taking everything for two weeks starting on Saturday (which may be an issue with my asthma due to reactivating viral flare if I dont rest enough). They are going to ring me again tomorrow to sort it out.

    Today, Im very nervous as Im going to a GP ive never been too and who knows what will be like, to ask her if she can support me getting the hair test as the supplement recommendations they send due to ones results can only e sent to a dr. As I dont know how the dr views ME/CFS or the other conditions I have, Im not going to tell the dr I have ME/CFS and have said at the desk that I only want to see a dr re a hair test and do not want to have to go throu all my illnesses with the dr (it would need 90 mins to do that without trivalizing my condition!!). The clinic said that would be fine but Im expecting it wont be as after I said that, they still handed me a form to fill out which asks one for all ones conditions.. which Im not about to fill out. If I end up finding I like the dr, I'll get Cathy to talk to her about ME/CFS and see how the dr is with that.

    Cathy thinks what Im trying to do here isnt going to work as not many drs support hair tests and I think Cathy is probably right. Im expecting this not to go well but Im desperate to have that test done again (and need it done before I stop the supplements for the study so I now need to find someone local FAST, even if it means going to every single doctor in this area and asking. A HUGE issue when I can hardly be in waiting rooms re perfume, Im sure that is what caused my last collapse in a drs waiting room).

    It's been over 2 years Ive been on supplements due to my last hair test results and hence Im really wanting to know how things are going there. If this dont work out today.. I'll have to rely on Cathy finding me a suitable dr (pity they wont let one talk to drs via phone to find out suitability to be my dr or not and expect you to go and see each dr but anyway, Cathy can get around that and interview all the doctors on the phone for me).
     
    merylg likes this.
  7. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Pity indeed! Can't you even call and ask if they do hair mineral testing? Then you could save everybody some time by not talking to the ones that do not. Naturopathic doctors might be a good place to start.

    Is the doctor that used to do your hair testing still practicing? If so, could s/he receive your test results and send them on to you. This is all just so much more complex that it ought to be.
     
  8. taniaaust1

    taniaaust1

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    My previous specialist who had me do hair testing 2 years ago, had a stroke last year and Ive heard is no longer practising due to that. (He's an old guy).

    and no, I couldnt find out much about the doctors when asking at the front desk. I couldnt even find out if any were seeing ME/CFS patients at any of the 3 local clinics when I asked.
     
  9. taniaaust1

    taniaaust1

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    Update

    I just got back from the doctor and thought I'd update before hitting the bed for the rest of the day. It turned out the doctor was great!! (I cant believe I got lucky for once). She was actually interested in hair testing, said my timing to ask her about this was interesting and coincidental as she's currently got an American friend doing research in hair testing who's she had been talking too, so she was interested in the company I was going to get this done throu, the previous findings of my past hair test and how that had helped me etc etc.

    She respected my wishes and didnt press me for anything else, she was lovely .. only for my allergies (which is fair enough seeing she will be giving me the supplement report). When I then told her I have MCS and issues with perfumes, she actually understood that stuff :) . She also brought up the topic of Aspergers during our appointment too (cant remember why she brought that topic up maybe it was due to the perfume issues) so at that point I did tell her I have Aspergers. I didnt mention that I have ME but seeing this doctor was so great with personality and open to new things, Im going to ask Cathy to talk to this dr to see if she is interested in learning about ME/CFS and taking me on as a patient.

    So maybe I have finally found a good local GP :cool: (amazingly on the first round of dr russian roulette if it pans out). So now she only has to pass the ME/CFS test (and not be a GET/CBT pusher and willing to learn the basics of ME). Even if she turns out not good for ME, at least I will know I will be able to use her for other things.

    The clinic is ideal too as they have a HUGE waiting area which is in two areas and they have hardly anyone in it (there was just one other person there so I just sat in the other area, it was empty last time too with only one other in one of the areas, so I was able to sit completely away from anyone). The drs seemed to be all very relaxed there.. standing around chatting to each other in the doorways. Obviously this clinic doesnt over book its patients. Its the most relaxed clinic Ive ever come across (that's really saying something as Ive been to a heck of a lot).
     
    Marlène, Ritto, Valentijn and 3 others like this.
  10. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    It is great to hear that you have found a good doctor who works in a good clinic. It would be the icing on the cake if she is willing to deal with your ME. Cathy sounds like a capable person, so I hope she talks her into it.
     
  11. taniaaust1

    taniaaust1

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    I'll talk more about this later, Im too upset about it right now, been quite upset since yesterday when I read an email from Cathy yesterday in reply to a long one of mine (which I'd put energy into, due to that email so I'd got none of the things I'd wanted done on the day I did that email done.. I'd spent hours on doing the latest email to her trying to clarify things). Anyway, she's now saying that she/they dont do advocacy. :confused: Im so confused who does what and I truely had thought she was going to help me from the things she'd said. I'd come to believe that Bridges and Pathways (or whatever they are called) were helping severe ME patients find good doctors and were speaking to doctors about ME/CFS as that is what Id been told by her.

    Why do I keep being told to contact places who cant in fact help me? Both the CFS specialist researcher and DisabilitiesSA had both told me to contact her for help (I'll post Cathy's mail to me here later.. Im just too upset about another knock back for help and wasting my very valuable energy on that when I could of been doing other things, when every activity I do is impacting on whatever else I can do.. well its upsettting. My energy is like treasure to me and so much of it ends up being wasted on useless stuff).

    Due to the nightmare time I've had over GPs.. Im currently too fearful to bring up ME/CFS with that dr who could end up being okay. I probably now wont. I think Im going to try to illegally get my prescription drugs from overseas as Im about to run out of things, cant get to my ME/CFS specialists (due to my transport issues havent been sorted out still) and are in too much fear of bringing up ME/CFS myself with a new doctor who I dont have a clue how she thinks about the illness. I dont feel comfortable enough to talk to the dr about it due to my past experiences (I'd be okay if another who had ME/CFS had refered me to the doctor but no one has). I dont fear like I can myself bear another ME/CFS doctor rejection.

    (Note.. my last GP I had for 2-3 years, completely betrayed me.. made out he thought ME/CFS was a real illness while the whole time he obviously didnt :( . I only found that out when I'd gone to him distressed, telling him I'd ended up in another horrific situation out in public due to a collapse (I'd collapsed and hadnt been able to get home from his appointment before, stuck in a gutter one could say, it was a horrific experience about to pass out and not able to get home) and he turned around and coldly said 'You arent disabled!!" (his comment after having him for that time as my GP hit me to my core.. I hear his words replay in my head over and over with some of the emotion (extremely deep hurt, betrayal and also fear. Fear I could die due to the false beliefs drs have around this illness) . I feel the emotions coming back each time I rehear his words in my mind. Im crying about it right now again, I struggle to get over this on top of everything else. The thought of going to a GP who may end up being the same over ME/CFS, makes me inside feel very sick.

    At that point I also understood all the other bad treatment I'd got from him eg so many of my appointments he cancelled on me etc). That GP had ignored my specialist, the specialist thought he was following things up things with me and I thought my specialist had basically abandoned me as the GP never told me the specialist was contacting him and suggested things for me). (Before him.. I'd been throu over 30 GPs who had either rejected taking me on in the first place due to ME/CFS or all believed in GET and CBT or didnt believe this illness truely exists.

    I feel I cant myself trust GPs now and really really need someone to check one out for me or suggest one who is okay for ME/CFS. The whole idea of bringing up the subject of ME/CFS with a new GP completely freaks me out and after that betrayal of that other GP I had for a couple of years, I now dont even trust my own judgement of who could be a good GP for one who has this illness severely. So at this point I'd rather get my prescription drugs illegally for my ME/CFS stuff then risk another GP if I dont have another to be helping me.

    I hope the mods dont remove this post as this is my current reality and I suppose Im not the only person in this situation who doesnt have a GP (and who cant get to their ME/CFS specialists) and is now at the point in which its become unbearable to keep "trialing" (non ME/CFS) GPs out randomly . I feel liike I really could do with some professional counselling after that last GP betrayal thing last year (Im still very upset about it) and the fact I now feel like I cant trust random GPs at all due to it even if they act nice (that other who decieved me acted nice.. even when he kept on cancelling out my appointments, he always gave excuses I believed at the time. I stupidly did not want to think that yet another GP was majorly betraying me .

    (several years ago.. my boyfriend slept with a GP (unprotected sex) I had after getting me to move in with her as she said she'd help me (so double betrayal, she used me and my illness. the ME/CFS, got me to come and live with her to so help me, to get to my boyfriend!!). I had to have a lot of counselling over that one (over 10 counselling sessions as that incident made me suicidal) and my emotions around that but she got away with it as it was my word against hers as far as the sex went as my boyfriend wouldnt admit to the medical authorities what he'd done with her (he just told me 6 weeks later!). I dont know if she got into trouble for living with a patient. Ive been throu hell and back as far as having issues with GPs.
     
  12. taniaaust1

    taniaaust1

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    Update

    I have lots on the go trying to sort things out. Ive been overwhelmed with things and really struggling so didnt feel up to doing an update on my situation till now (I'll post that email from Cathy saying she cant help advocate for me.. from Bridges and Pathways.. another time)

    Cause my garden is so bad right now (weeds out front thigh high, one cant even see the rose bushes) I finally rang the local council today to ask if they had any form of gardening service for disabled people (I couldnt remember if I've already tried that avenue previously, Im probably going round and round in circles with things trying to do the same things over and over as I keep forgetting what Ive tried :( ), I think disabilitySA may of told me to try the local council but I couldnt remember (and still havent found again their letter to me) .

    Anyway when I rang the local council today, I was told the council do not do weeding or lawn moving at all (they can tidy up gardens in a non gardening way thou but that isnt what I need), the council person said DisabilitySA should help me out with sorting something out there **sighs.. the same old issue, one person refers me to another and that person refers me back to DisabilitySA, I strike that a lot in my phone calls, places saying DisabilitySA should be helping me and they are mystified when I tell them DisablitySA wont help (Im sure its the discrimination against ME/CFS thing as why are these places are mystified that DisabilitySA isnt helping if DisabilitySA wasnt helping others with these things??).

    *Note.. my normal gardener is now avoiding my place as he dislikes weeding (he did this last time too) so now not only do I have high weeds but a very high lawn too. Ive having issues finding a gardener to weed as they like to spray and I cant have spraying out there due to the MCS.

    ............

    I now have the medical supply place on my back as the support stockings I was fitted for and ordered and which had to come in from overseas and there now, waiting for me to get them but I still havent managed to get to my specialist (Dr Del Fante) to get a referal for and it seems that DisabilitySA has ignored his phone call to them saying I need my transport situations sorted out so I can see him for the referal. Im STILL waiting for some contact to be put in place to help get me to specialist appointments.

    Im very nervous about it but Im going to try that local GP again and see if she will do me a referal for them even when she dont know a thing about my condition (I still do not wish for her to know I have ME/CFS thou as Im not at all comfortable bringing that up when I have no idea how she thinks about ME/CFS people). What are my chances of getting a referal for a very high compression stockings from a doctor who wont know nothing about POTS and who doesnt know me?

    Maybe my hair test results are in too but it doesnt matter if I go and they arent as I know I will take up all the appointment time just to explain about having POTS and the need for a referal to be sent to the medical supply place.
    ..............

    Getting my fasting blood test done (the one Ive been needing to get done for one of my specialists since Jan! as its meant to be monitoring my treatment plan) screwed up last Thursday. My ride showed up (for a change!) but when we went there, the blood place said it was too late in the morning to do one of my tests :eek: The test needed to be done before 10am (it would be great if someone would tell me these things in advance!!) and I was taken there at 11am. Sooo frustrating. So I had to rebook with a support worker to take me tomorrow (and cause things didnt work out the other day it just wasted my support time). This was the FOURTH time things had screwed up around this fasting blood test (the other times the agency screwed up with arranging the worker to take me so I fasted but had no one show).

    So now Im going to have 2hrs taken away from my already not enough support for my housework. At least the support agency has asked me what day i want to loose my home support from so I've picked a day 3 weeks time. Anyway, this is going to mean that I wont have any support to have my floors done for over a month due to other things which have to be done or local appointments at the new dr (I have to go back for my blood test results and hair test results..so more support time needed there) and Ive had glass in my foot twice since Friday due to dropping things which shattered really bad not just throu my kitchen but glass ended up in the next room too. My floor hasnt been vaccummed since the shattered glass (which was only just swept up but obviously a lot of little pieces got missed so hence ending up in my feet). Unless I can somehow fit those two floors into my activity pacing (which floors right now just dont fit into things unless I miss meals), it means I probably will get more glass into my feet.

    Its a horrible situation choosing do I get to a needed drs appointment (seeing I now have medical supply place on my back to do so) or do I get important house stuff done by my support worker (I dont like dishes sitting on my sink for a week so choose that over getting the floor vaccummed as it is due to the taken away time, it probably means the dishes wont even get finished by the support person so will be going a whole week anyway). Last week I cheekily used an extra hour of support time and almost got all my floors which hadnt been done for 4-6weeks done (but then shattered that glass over the floor 2 days later).

    Today I begged Margie from home support agency when she messaged asking what support time I prefered to loose (it was probably that Margaret person Ive previously had a lot of issues with) to phone DisabilitySA and tell them I need more support hours as they are having to dock me on hours I need as Ive already used them for blood tests and local medical appointments but she wouldnt ring them and said its between me and them to sort. I want to know why the extra hours they said they were going to give me, is taking soo long to get put into place

    The Disability Complaints Advocacy place should of rang me back by now (they were going to come out to my home and see me) but havent rang back so I do not know what is going on there. They said they'd organise an appointment with me in around 10 days but now its heading towards a month (are I getting avoided due to saying my issues were based around support and ME/CFS and I need advocacy help around that?). I dont know what to think.

    .................

    My dad showed up at my house with my nanna the other day, she'd been begging to see my place since I moved in here on Jan 4th, my dad hadnt seen my house either. I was sooo terribly embrassed due to the house being such a shocking mess. I think she was shocked, they didnt even stay for a coffee.
     
  13. taniaaust1

    taniaaust1

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    Im tired and headache this morning as I slept terribly last night due to situational stress. I was stressing about this mornings fasting blood test as I collapsed last blood test in the carpark right after the test (which caused some problem at the clinic as I had to them be helped to one of their rooms to lay down and while I was there, the dr couldnt use the room for her patients which made me feel guilty when she asked me a couple of times when I'd recover enough to be able to walk myself as her patients were waiting), Im also stressing a lot about the local drs appointment I have on this arvo (aussie slang for afternoon) as who knows if the dr will give me the referal I need for my compression stockings re my POTS.

    I really regret putting these things on the same day rather then spreading out the stress things, due to the stress both are causing but both are now urgent things with others waiting for me to have them done and phoning me about them cause I havent.

    ...............

    I forgot to say in my last post that my 23andME test last week was sent to the lab (there is currently a 4-6 week wait there for results).
     
  14. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I hope the day went well. :hug:
     
  15. taniaaust1

    taniaaust1

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    Second appointment with GP Dr Jasmine MacIntyre (not a ME/CFS specialist)

    The appointment didnt at all go well as for getting what I went to her for sorted out She said she couldnt help me with the referal for the support stockings as she knew nothing about POTS so the appointment there went just like I'd thought would happen. (I'd taken some POTS info in with me but it wasnt enough as I'd struggled to find the info I needed to back up the compression level for POTS etc etc even thou I'd spent hours in trying to get ready for this appointment :( ). I just keep forgetting where everything is, I'd photocopied this info before but in my messy house which has piles of paperwork, couldnt find it.

    She did thou refill my clonidine prescription (I only had a few pills left for my orthostatic hypertension and hyperadrenic POTS) so it wasnt at all a wasted drs trip. It was still upsetting I couldnt get the referal I really needed thou understandable she wouldnt refer me for something she knew nothing about.

    I was quite distressed over her not being able to do the referal (without my stockings which I dont have right now, Im 15-20% worst with what already is bad POTS) and she could see that I was upset about this so said (and she did do this and sent it after I left) she'd write a letter to DisabilitySA saying that I NEED to be able to get to my specialists.

    Anyway.. Ive had a second appointment with her (one the week after this other one due to other stuff Im about to get into trouble with.. I had an emergency connection done on my phone when I moved in as it was summer and I had no electricity and I pass out in the heat with my POTS. I was supposed to get a form filled out by a dr re me doing that or they can charge me for the special priority connection in which was done within 24-48hrs due to my health issues.. and as yet havent had that form filled in to prove I needed it..so another thing I need to see a local GP for without knowing if one who dont know me or the seriousness of my issues, will fill it in for me. Another stressful trip in which the dr may say "I dont know enough about your condition to fill in the form".

    Update on how the third appointment with her (Im seeing her on Thursdays) went next.
     
    heapsreal and Valentijn like this.
  16. taniaaust1

    taniaaust1

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    Third appointment with Dr Jasmine MacIntyre

    I went to see her to fill in the form which needed to be filled out (I'd got a letter to say I could be fined for misusing the phone priority connection if one didnt have the grounds for it).

    To my surprise she happily filled out the form (I wasnt expecting that).

    I'd also since my visit to see her last week, after a lot of searching online for the info (sighs.. full time job having ME/CFS).. found some articles which stated what the compression of support stockings in POTS could be, so took them in to her too to see if she'd do the needed refer with the better info on what I was needing. She read thou them but the info thou she could now see exactly what I was needing, wasnt enough medical backup for her to do the referal as the sites I got the info from werent medically acceptable (eg medweb etc). So she then went searching online herself from more drs sites but unfortunately thou the two medically accepted sites she went too did state about compression stockings being used, they didnt in fact give the details for the pressure so I was still out of luck.

    She then said she didnt mind a challenge (I cant remember when the last dr said that too me, I dont think she's got any idea as yet just what a challenge my case is, Im still yet to tell her 90% of my symptoms and other issues or that Ive got ME/CFS) and said she would do some research on the right compression for POTS and told me to come back in to see her the week after. I couldnt do that thou as that would mean my dishes would be left for a week (as Im using my support time for these appointments, my support worker to get me there and home and had no spare time which wouldnt affect the time my dishes get done) so have put my next appointment with her the week after next.

    My hair test results which I didnt realise had come had, so we then went throu those results (she knows nothing of hair testing but supported me in doing that as I went throu an accrediated lab). She wasnt allowed to photocopy the doctors report of it (which sucked as that was the whole reason I'd gone throu a dr to have it, so I could have the drs report), so has allowed me to take it home to photocopy and bring back (Im soo liking this dr, finally a reasonable dr who is trying to be as helpful as she can be). Next post is on my hair test results.

    I think I was in the appointment for maybe 40mins? This clinic is great, Im never rushed and I arent even booking double appointments, they must make sure their patients get plenty of time.
     
  17. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Why couldn't she just call your specialist and ask. Or better yet, just take your word for it that they had been 'prescribed'. If the doctors won't trust one another, how can they expect us to trust them?

    Did you tell her that you were putting off the appointment to get dishes done? If things like that happen a few times, maybe she will back you to get more support hours.
     
  18. taniaaust1

    taniaaust1

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    Cause my "CFS" specialist who knows a bit about POTS (there is no ME specialist in my state, all the ones here think the PACE trial was great etc) prescriped the wrong compression in the first place and he says he wouldnt talk to me about the referal unless I come in an see him (which I cant get to him cause DisabilitySA STILL hasnt put transport to get to him in place. He has rang DisabilitySA about me needing to get to him but they still havent arranged anything.. and now on top of that, the new GP has also written them a letter about me needing to see the specialist and asked me if they'd called me yet in regards to her letter.. umm fat chance of that, the state Disability service just dont give a crap about me, I think its cause I have ME/CFDS).

    She said its not that she doesnt believe me and she said she does in fact believe me.. but said its her back on the line if something went wrong, so she's got to feel herself like its all safe for her to be doing. (It's the normal case of simply a dr not being comfortable dealing with my stuff.. it is at this point I often get "dumped" by doctors).

    Another thing.. she goes also strictly by the medical guidelines with things, that was also clear in my last appointment. So I now know that there is no way that this GP would support any kind of experimental treatment or something which wasnt the "norm" (fully accepted and recommended), she's very careful to cover her back. This is okay with me, I wasnt expecting anything more from her then to be a reasonable doctor (GP) for me.

    Just finding a reasonable dr here as far as having a patient with many issues they dont know about, is very very hard, many drop me for that saying my situation is too complex and they dont feel comfortable being my dr due to that (that's the better ones who actually are honest with me).



    I did ask her to ring him but she wouldnt as he's already said no unless I come in and see him, she said it didnt feel right for her to do that when he's already said that.




    Yes she knew that... I had an aggivtated discussion (cause Im soo peaved off about my situation and being even put in the situation where I cant get to my appointments) about what I should do with my support worker right in front of the dr.. whether I should go without my dishes being done for a week or go back to the GP like she wanted me to do and then I ended up making my appointment time one week later due to this.

    Issue is now it may be clashing with a week in which I have already too much in my sensible pacing schedule.. I have a week in which I have 3 appointments for research (brain scans etc.. study people provide all the transport) and those appointments the dates were the other day changed on me.. there is no way I could do 3 appointments in which Im already loosing one of my rest days* and then have this other appointment in the same week as well on one of my other rest days, so I will have to change the appointment time and put it off yet another week on top of the week Ive put it off now due to the support situation if it is the same week.. Anyway.. I got to try to work it out and what Im going to do where when I can pull my brain together enough to sort all the appointments out.

    * I have scheduled rest days during my week (one mid week and also Sat/Sun.. it often takes me to late Sunday night to get back to my baseline for Monday), as what I do on the other days when I are doing things, just accumulates as far as impacting on how my health is.
     
    Little Bluestem likes this.
  19. taniaaust1

    taniaaust1

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    Hair test results

    Below are my hair test results. The first one is my original one from over two years ago and since then I'd been supplementing ever since trying to improve on those results

    - lower my copper (via selenium and sometimes Vit C. The selenium did help my hair and nails)
    - fix the basically nil molybdenum level (taking molyzinc daily and this did help my brain, within 4 days of this supplement I could do maths in my head again which was something I hadnt been able to do for years)
    - fix my basically nil lithium level (so was taking lithium orotate daily. Taking that almost doubled my borderline (low) white blood cell count so now that is at a better level)
    - Thou I didnt have much toxins showing, my specialist wanted them lower (another reason for the selenium)

    Unfortunately after 2 years of daily supplementation my issues werent all fixed :( only the copper and some of my toxins are now almost completely gone. Unfortunately I hadnt been able to afford another hair test sooner to see how things were going. My molybdenum is still quite low (only half way to a normal level but at least the supplementation is helping) and for some strange reason, my basically nil lithium hasnt budged!! (why would that be so? does anyone know?) and now I have a new thing also showing as being basically nil. Not only that, now I have some things too high (calicum and magnesium thou I arent taking supplements for them).

    My cobalt is WAY OFF chart cause of my methylB12 for my MTHFR polymorphism. What the heck is my Bismuth doing, I went from having an abnormally low amount to having it going so high its off chart and that is a toxin (the last number on the high range is .059 my level came back a crazy .341!!!). Can anyone work out where I'd be getting a MASSIVE Bismuth exposure from?

    Here's my 2 hair tests (first one the old one and the second my latest one). I'll discuss these findings in more detail another day and my latest supplement plan due to these (If I take more molyzinc to try to get the molybdenum into the normal range its going to put my zinc to high :rolleyes: . If I try to have it in multi supplements not only the same thing but Im also going to make my high calicum and high magnesium worst....I wish things were easier to sort out). Im right now trying to get my head around what I should try to do (the lab made a heap of suggestions but they are ones I cant follow due to my other health stuff.. I'll talk more about that in another post).

    [​IMG]


    [​IMG]
     
  20. Valentijn

    Valentijn Activity Level: 3

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    taniaaust1 - Australia is a big source for bismuth. Maybe there's some in your water, or soil? It's also used in pharmaceuticals (mostly GI related), iridescent pigments, and metal alloys. The good news is that the body can process and excrete it quite easily. If there is an overdose issue, you'd probably have a black line on your gums called the "bismuth line".

    Otherwise, high levels in your hair might just indicate exposure to it and normal excretion.
     
    taniaaust1 likes this.

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