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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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    So 12 of us to 11 controls. 1 control hetero.. while 3 of us have some mutation of it. I wonder if the 3 of us who have some form of mutation of this, if we all have MCS? I really follow what you have done there with interest. I hope some time you can expand on what you are doing there :) . I really want to know how a larger groups of both would compare.
    ........

    For anyone interested, today I came across a list of conditions found in mastocytosis and lots of them are ones found in us http://www.mastocytosis.ca/perelated.htm so maybe there is some close connection between this illnesses with some of the same pathways involved?
  2. taniaaust1

    taniaaust1 Senior Member

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    update

    The lawyer never got back to me re my query so I had to ring there and ask (the secretary appoligised that they hadnt rung back). Turns out they dont do pro bona there at all and I got told if I want to come in and discuss a legal case it would be $300 per hour!

    So it looks like I will be ringing the law society to try to find a lawyer who would take my case on pro bona.
    ..............

    Yesterday late afternoon, I tried to ring me GP about me having had ended up in hospital again on Friday after the last time we spoke but she was already left and wasnt going to be in today. Hopefully she'll ring me tomorrow (thou Im not sure how clear I made on the phone to the receptionist that I want to speak to my GP).

    I tried to ring the HCSCC twice today and left messages asking the one dealing with my case to call (as I want to tell them I ended up in hospital yet again and they need to put pressure on Disability services to be helping me NOW not waiting like they have been which in the meantime I just have gotten worst and worst due to that). Its looking to me that they probably arent going to call me back today.

    The way things are.. its looking like I'll die from OLD AGE before this is sorted out!! Its ridiculous.
    ..........

    While I was writing this my advocate Leatha Henry just rang and tells me there has been an issue and that disability services asked her to contact me to find our my doctors address as the letters they have been sending have been just keep being returned back so they think the address is wrong.

    What!!! That makes no sense at all my doctor works at the same 9not small" clinic she has always worked and if they had the address wrong..surely they could of looked it up in a phone book or something.

    :( I just forgot to tell my advocate on the phone that Im wanting to go back and see my GP after my latest collapse. Hopefully I'll remember to do so tomorrow when she calls me back again tomorrow.
    Last edited: Jul 9, 2014
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  3. taniaaust1

    taniaaust1 Senior Member

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    Update

    My advocate rang back the next day and I think I've peaved her off, I think she hang up on me!! . Im so desperate here that Im starting to push her more that this is all URGENT, I cant afford to be left getting worst (she'd been dealing with my case since late last year, early this year and we are getting NOWHERE). I NEED to be able to get back to my doctors and have the tests they want me done done!!

    She frustratedly replied back she was doing all she can (her voice seemed to raise up a bit) and then she hung up while I was still talking. I still havent seen what letters she's done for me so far. The last thing I asked her before she hung up was when can I expect to hear back on what is going on, could I expect DisabilitySA to respond back to things if I give it a week. She said yes.. so I will wait a week and follow this phone call back.

    She also said DisabilitySA has been trying to ring me. Well Ive had no calls from them (unless they are ringing while Im asleep, they have been told so many times to not ring me till a certain time as I arent always up till a certain hour). I no longer trust them on the telephone anyway due to the mindgames they've played with me and things said. I think I need to do them a quick letter saying, I want anything they have to say to me in WRITING!. I do not trust anything they have to say at this point.
    ...........

    Teneal? from the SA lyme group phoned me today (thanks GcMAF) and we had a chat. She's trying to convince me to use facebook but I find that all too much for me (last two times I tried to join up with FB over past few years on my computer, my computer completely stuffed up, it hates something FB puts into the programming to monitor.. it caused me a ton of issues and I had to get stuff removed, couldnt use my computer for a couple of weeks, so I dont want to do that again. And my family would be also all too much if I use FB. I always end up getting very distressed if I use FB due to the issues it causes me :( so I feel very uncomfortable now.

    I find PR very challenging.. all the headings, trying to find posts and not being able to remember where they are, trying to remember what people put into their messages, trying to remember who is who who normally chats to me. This is hard enough for me and Im here all the time and its still hard!

    I do not feel like Im well enough to be using FB (I cant even keep up with my email!! so dont even check that, the only thing I manage to focus on without getting overwhelmed due to how much things sap me is this website) even if my computer could cope with it (which it dont) . I can understand her point thou of that I could really do with the support and it could be how I could get some physical support which I do need. If I could get FB and joined there, it would basically probably mean I wouldnt be able to come to PR and then would be cut off from my friends here, it would too much to be hanging in two places for me. :(

    :( isnt there another way to possible make contacts and get some physical support without something which is going to stress me out? and possibly make me sick then due to that stress.

    Im thou not even convinced I have lyme... I more think I have a mast cell issue (innerly, a part of me is certain I have issues with that.. .lyme? I just dont know thou). She did mention about trying to get me to the lyme meeting so I can meet others who are sick and form contacts, that would be good for me if there is a way for me to get there (and Im not even sure if I could survive an outting like that either! as much as I would like to go. I'll give it a go thou if there is a way to go but there is probably a 35% chance that an outting like that is going to put me into hospital).

    She kept saying she was extremely sick herself but I keep thinking she doesnt understand how sick I are (she didnt seem to realise that I may be unable to be taken to a meeting without an ambulance maybe having to be rung).

    Last time I got taken out to anothers place for just a chat, I think I lasted only 30 minutes sitting legs up, before I had to lay and then half an hour later talking WHILE LAYING.. I was collapsed when I went to stand as even laying with people talking had wiped me out so much to the point I was no longer physical functional.

    ***sighs*** I guess Im going to have to go to something like that before people release how sick I actually are as sooner or later I would collapse at such a meeting (what's worse, I think it would be FMC the hospital I'd be taken to in such an event and that one is heaps worst then the one Im ending up going to now).

    Last time I met with another who was very sick, I collapsed on her (she didnt understand when I say I need to go, that I really need to go NOW) and she never invited me to her place again.

    Teneal kindly is going to ring Dr Belinda Coyte and ask if anything can be done for me (Dr Coyte is the lyme doctor I saw once last year and havent been able to go back and see due to my transport issues. I collapsed at Dr Coyte's clinic in her waiting room on the only time I got there but refused an ambulance as back then I was recovering not too long after collapses, unlike how things are now).
    Last edited: Jul 11, 2014
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  4. taniaaust1

    taniaaust1 Senior Member

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    Todays update part 2

    Today was "almost" disaster and also was more screwups. The support agency stuffed up again.

    I'd been stressed since I wake up this morning worried that they would stuff up again and sure enough they did. A support worker arrived at 1.30pm to take me shopping (I get 1.5 hrs for that) and the other wasnt coming till around 3.30pm-4pm and they were both needed together take me shopping. I'd told the support agency person who'd arranged the second worker, that she'd best check with my normal worker when she made time with another but as per normal I hadnt been listened too so this stuff up happened with them being arranged to come at different times.

    Beck then denied I'd told her to check first the time before booking the other person. (I dont know if this Beck is my new coordinatior for the home support agency or if they still got to give me one since last one left agency).

    I found out the reason why my normal support worker hadnt been on my shift on Tuesday (the shopping trip I had to cancel due to that), was cause they'd pulled her from it saying she wasnt allowed to come as she didnt have epi-pen training. Caught up in rules again, the agency has a rule that no one without this training in these is allowed to attend if someone has one. So instead of giving me my normal shopping support, she was in training over that.

    They got in my normal Tuesday worker today to be as my second shopping support but she had to leave by 4pm (she'd be out having fun at a band right now), so it wasnt going to work out if she came back later when my normal Friday worker now comes (who's now coming at a different time due to her new job). So this then meant my normal Friday (today's) worker had to be cancelled due to the other already being here, so they then had to find yet another worker for me today to get to me quick!

    As the other one was already here, I got upset, hoping that they wouldnt pull more time from my time due to their screwups (we had phone calls going everywhere) as I still needed to go shopping and the worker here was worried they may not pay her thou it was their screw up. They admitted thou this time it was their mistake and said I wouldnt lose support time over what happened today. stress, stress, stress

    Anyway..after an hour??? things finally sorted out and another new worker arrived and we got to go shopping.

    My MCS seems to be getting worst (does stress worsen MCS????). I usually avoid the chemical aisle but today I had to buy some natural fabric softener, so had to go into there to check those out. If it wasnt for my wheelchair I would of been on the floor as I badly reacted to the chemicals there even thou I grabbed the two natural fabric softeners and was wheeled away from the chemicals while I was reading their labels. I was wrecked by those chemicals.. slumped then in the wheelchair cause I then went very weak, blurry vision and my support worker said my eyes went all red and bloodshot.

    Lesson for me today. Stay out of of the chemical isle of the supermarket completely! Next time I'll just send a support worker into there to hunt for the natural products. (Why do supermarkets put the natural products with the chemical ones?).

    Had to go after that to the loo at the shops and almost ended up on the toilet floor, my legs were starting to give way when I got out of the wheelchair to go. We only JUST managed that shopping trip without a disaster.

    Last edited: Jul 11, 2014
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  5. taniaaust1

    taniaaust1 Senior Member

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    letter with phone numer out.jpg "simple test" Well its not simple if a person is unable to get to a place to have it done! Is my specialist pissed off with me??? His letter I got yesterday I think it was, carries a strange tone?. Maybe he's peaved with me as I havent had the tests he told me he wanted me to get done, done yet. Its hard when I cant get places to get them done!!!! (I felt like he didnt really listen when I'd told him that at the appointment).

    I think I need to phone him again and tell him, I cant get to the places to get the tests as even with my advocate, DisabilitySA isnt paying any attention to my medical needs (but Im feeling scared/intimidated to phone him and try again to get him to listen about my issues when I couldnt get him listening at my appointment. Im going to have to do so thou.. feeling sick with nerves at the thought).

    Many doctors just think including this one I believe as he just didnt listen, they think you can get family to help you and dont listen that I dont have enough support around me (he's aware Im in a wheelchair). I dont think I even got throu to him either that my support workers are only here for a short time a couple of times a week and are not given time to take me to appointments (His appointment was the last medical appointment I'd been granted support to get too and now Im fighting to get support to get to other medical things). I gave up at the appointment trying to get throu to him as he was being too hard for me to talk to, he kept cutting me off.

    He's a good old school kind of doctor but with his aging (he's not young and he's not well), he seems to have lost his ability to be able to listen well (his nurse at one point stepped in to get him to listen to something I said as she could see he was misunderstanding me).
    Last edited: Jul 12, 2014
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  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I use white vinegar for fabric softener. When I get 'unscented' fabric softener sheets for my Mom, they have picked up so much scent from the things next to them on the shelf that we have to leave them outside to air out for a few days.
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I have to avoid going anywhere near aisles with cleaning products in them, or hold my breath and dash in and out, which leaves me out of breath and exhausted, barely able to stand, and there is nowhere to sit down. I had to take back some loo rolls once as they stank of the chemicals from the other products in the aisle. That's another reason why shopping online can be so much easier - the only perfumes I am exposed to are those worn by the delivery drivers (which can be overpowering but I hold my breath as much as possible and put the extractor fans on, after keeping the drivers from coming too far into the house). Some of the carrier bags smell a bit but it's not too bad.

    I have commented, both direct to a staff member and in writing to the managers, about these problems, but the staff can't seem to smell the perfumes at all, and the managers never replied.

    I now use soapnuts, aka soap pods, for my laundry. They are completely natural and can be composted afterwards. They leave the fabric lovely and soft, although they don't perhaps clean as well as the harsher detergents.

    Maybe Tania could try using soapnuts as fabric softener? I buy mine in bulk, and they are not expensive.

    Ebay Australia have them on this page.

    Some charge high postage rates, but some are more reasonable.
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  8. Gingergrrl

    Gingergrrl Senior Member

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    @taniaaust1 I would be really careful with posting your full name/address and other details from the doctor's letter in your above post. I am not trying to censor you in any way, and am mentioning this because I feel protective of you and want you to be careful!
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  9. taniaaust1

    taniaaust1 Senior Member

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    :)
    ah thanks, I'll have to try that. I use vinegar on my hair as a conditioner and it works so well for that, I never thought about trying it in the laundry.

    I never knew that fabric softener came in sheets, Ive only ever seen it in bottles (maybe sheeted fabric softener is an American thingy?). Yeah there would be no way I could use it in sheets unless it was completely sealed.
  10. taniaaust1

    taniaaust1 Senior Member

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    Thanks for the idea, I'd never heard of soap nuts before. I do have the natural fabric softener now (its really nice in smell and is obviously to me natural too).

    I may thou I think try the vinegar next time as it would also be a cost saver thing.

    and ohh..at the other part of your post, I hadnt even considered that problem with ordering. Its like every option out there for us carries issues of some kind of another.
  11. taniaaust1

    taniaaust1 Senior Member

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    I always post that as Im so needing help and hopefully someone in some high up place will see my posts and do something about the shocking experiences Im having here or even wish a newspaper would pick up on how some of us are being treated and stop what is going on. People pay more attention to things if people arent anonomous.

    but thanks for the warning. (many of the people who have treated me shockenly, deserve to be outted with how they are treating us.. by that I mean the disability services people who are discriminating against ME/CFS. I dont really have issues with my own doctors, thou I wish they could do more).

    As long as PR doesnt get into trouble, I do not care if the authorities I speak up about try to take me to court for slander, as all I said is truth and I can prove nearly everything Ive said. (it would probably be a godsend for me if they tried to do that as then I would be given a legal aid lawyer for free and I'd bring the discrimination Im getting from them into court!).

    I also do believe that Im going to probably end up dead due to this illness.. so my posts, this thread will be what I will be leaving behind to tell my story of what happened to me. A moment of time in history, a document of how badly ME people were treated by the authorities who are supposed to help.

    Im not going to end up becoming completely bedridden again and then possibly dead (I will die if I get to that point again as I dont have the help) with just silence left behind. Unseen and unheard, that is happening to too many of us.
    Last edited: Jul 12, 2014
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @taniaaust1 I guess I didn't realize that you have always posted your full name and address in your journal b/c it was the first time I had seen it. I had read a post on PR earlier in the day (I think by @JoanDublin but I am not certain) of someone on-line whose disability benefits had been taken away due to things they posted and it had me worried for you when I saw that. I feel protective of you but also understand that you are posting things in this way for a reason, so I do not want to interfere- just want you to be careful! I only wish the best for you.
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  13. taniaaust1

    taniaaust1 Senior Member

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    yeah.. I strongly considered how open I'd be about things when I started this thread and started giving out so much details. Thank you for the concern and it is something people do need to be careful about.

    If they go to investigate me, which could well happen anytime as I got told my disability pension would be relooked at in 2 years and its been way over that now! (maybe 4 years now??), I guess as this thread has dates of hospital admitances and all the other issues Im having, it could only really help back that I certainly need to be on disability. Its the best medical record seeing I can hardly get to doctors visits, of what goes on with me.

    I dont think anyone is going to read this thread and go "look at what a great time she's having on a disability pension", I wish I more positive stuff to say.
    ......

    You probably wouldnt have read back far into this thread but I have already been threatened by the high ups of Disability services over this thread towards the start of this year (they threatened to get me into trouble with the phoenix rising mods too, told me they'd dob me in for this thread and the name mentioning which they insisted went against PR rules). They have no morals! they tried to blackmail me into silence.

    The state disabilty service people hate this thread and its very upset one of them (Helene their social worker, she treated me shockening, told me she didnt believe my ME/CFS symptoms etc, I wrote a lot about what she did including she refused to refer me for the wheelchair I needed for a almost a year). I told them try to sue me for slander then and told them as long as they keep doing as they are, I'll keep blogging it.

    So I blog about the ME discrimination and unfairness. (this thread is supposed to be about my medical treatment but as I dont recieve the help Im needing to get tests I need done or go to doctors when I need to.. Im not getting the treatments I should be getting. except saline IV when I end up in hospital).

    Im really looking forward to when the day comes in which I can start blogging about treatments again.
    Last edited: Jul 12, 2014
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  14. JoanDublin

    JoanDublin Senior Member

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    Hi @taniaaust1 and @Gingergrrl43 yes it was me who posted about the Spanish guy whose pensions were taken away because of his online activity but it was a completely different reason. He is president of an ME support group and they took his pension away because they said if he could offer online support then that meant he could work as well....dreadful.

    I completely understand why anyone would want to post their full information online if it helped to expose bad practice, etc but I would be cautious myself esp about posting the other party's contact details as it could encourage anyone to contact them or harass them and if that were the case they may not take too kindly to it! You are between a rock and a hard place knowing what to do for the best though :(
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  15. taniaaust1

    taniaaust1 Senior Member

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    oh crap.. I just realised the letter the specialist sent to me has his mobile phone number on it. umm not sure if he'd mind that or not. I'll check his website and if his mobile phone number publically on that anywhere. If not, I'll take off the letter and block that out mobile number and put the letter then back. (the other phone number would be just the clinics number)

    thanks all.

    edited. Turned out his email on his letter too wasnt the public one on his public website, so Ive removed that from public view too along with his personal mobile number. (ME got to my brain. I certainly do not want to peave my doctors off).
    Last edited: Jul 12, 2014
  16. Gingergrrl

    Gingergrrl Senior Member

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    @taniaaust1 That was part of my concern for you, not just for your confidentiality but also that you could anger your doctors by posting their personal info. Glad you checked it!
  17. taniaaust1

    taniaaust1 Senior Member

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    Im a bit slow, it all went over head there for a while what people were getting at.
  18. taniaaust1

    taniaaust1 Senior Member

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    Update

    Teneal rang me again today, after talking to the doc, she seems to think my lyme test back was positive, Im like what? She's asked for a copy, Im now very interested too as I never got to go back to that doctor last year (or was it year before?) to talk about my results due to my transport issues but I did get a copy of it which did say negative. **completely confused now, I need to find my copy of that test** Im sure it said negative.

    Teneal is being a great help and is giving me ideas for things Ive never heard of before eg juiced cucumber is supposed to raise blood volume. I cant take up her coconut suggestion due to my carb issue thou. She also said that someone is looking into getting me another computer so I can join the FB group. I guess that will be probably very good idea for me for more ideas (thou I wasnt out of ideas at PR) even if I have to leave PR for a while if both places are going to be too much. (A social worker? from one of the financially counselling places was supposed to have put my name down for an old gov one but I dont know what ever happened there, they never rang me back when I tried to find out).

    This time I remembered to ask about her IVs and she actually does her own.. wow so it is possible after all!. She said she didnt find it all that hard to give herself an IV. (so if I can do this, the issue for me then would only be the cost of having 2 bags of saline each time etc.. not cheap). Anyway, that possibly would be very helpful so Im certainly wanting to catch up with her to learn how she does this one handed!

    She also mentioned I should get in touch with a Cathy from a ME/CFS group out my way but Ive already spoken to Cathy 2-3 times in the past and she'd told me there wasnt anything she could do to help me (as she's too busy educating doctors etc on ME/CFS, so wasnt able to help me with advocating for me at DisabilitySA), and she didnt see saline IV as a treatment for us so I couldnt get help there from her either when I asked. (I think its the Cathy from Flinders Hospital Bridges and Pathway?? program if Ive got the right Cathy).

    Some times I feel like Im sent around in circles but its cause noone realises where Ive already tried and who Ive already spoken too. Anyway.. it does look like Teneal will be able to help me some (she's lovely and doing a lot to try to help those with lyme in SA), with learning how to give myself an IV at the very least. (Im soo scared that her other suggestions arent going to help at all as Ive already tried so much).

    I dont feel like I can get my hopes up too much about other suggestions (thou I will be trying them) as I just dont think I have lyme (and I just dont want to end up feeling let down by whatever I try again, that's already happened far too much). This illness is so confusing as anyone who has a lot of symptoms could have so many different things.
    Last edited: Jul 15, 2014
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  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    What coconut suggestion did she make? Coconut isn't high carb.
  20. taniaaust1

    taniaaust1 Senior Member

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    She's suggesting coconut water. Coconut oil hasnt got carbs but coconut juice/water has and quite bit. (I tried coconut oil in the past and it didnt help).

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