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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. brenda

    brenda Senior Member

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    @tania

    I feel so sorry about all of the stress you are under. I think though that the way that you are trying to sort it out will not work and just give you more stress because the main problem is not being addressed. If you were given a diagnosis of a personality disorder some time in the past, it will stick, whether it is written anywhere or not, it will be recorded on your medical history. If you try to see it, you will not be able to as it is classed as 'dangerous' or unsuitable for some patients to know they have the borderline diagnosis. They can legally withold it.

    It is not classed as 'mental illness' as such as mental illness is treatable and personality disorder is classed as untreatable. Mental health workers really detest dealing with people with PD's as they are known to not do anything at all to help themselves and they usually have a bad attitude towards the workers.

    I think that it explains why you have such a struggle getting enough help.

    I think that the best thing to do is for you to get in touch with a borderline support group and tell them you think you have got a misdiagnosis and how do you go about challenging it. Unless you can get it changed, things will not change much and you will not get any openness from your support workers.
     
    Lynne B likes this.
  2. golden

    golden Senior Member

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    @T1

    I was going to post when you originally posted about the misdiagnosis issue.

    I am not suprised this is all stressing you out becsuse they are stressing you out by their whole dealings and unprofessionalism.

    My Mother was diagnosed with:

    1)cystitis
    2)tilted womb
    3)not tilted womb etc.

    as they spent months missing her terminal bladder cancer and plucking diagnosis out of thin air.

    Misdiagnoses are of no relevance whatsoever.

    More importantly if staff would have been more focused on cystitis and ignore the cancer then this creates an unworkable treatment plan.

    I don't know much about Asberges syndrome but you state a characteristic of it is to be a stickler for truth ?

    If I have understood this correctly then this will go in your favour.

    By making sure that you got Helen to assert on the form in writing that the mental label was a misdiagnosis - and not bowing to the pressure to sign it - you have in deed stood up for yourself - and they surely must understand Asberges.

    In future I would consider a personal policy of never signing anything on the day. I would need to keep the form to check I believed it was accurate before signing.


    Could you assert any and all communication to be done in writing or via email.

    I have done this with debt collectors in the past.

    I wouldn't seek out a personality disorder charity anymore than I would seek out a male prostate cancer charity.

    Perhaps an Asberges charity , which is your correct diagnoses - will help advice on correcting misdiagnoses as I am certain you wont be the only one this has happened to.

    In the UK I vaguely recall the only way to change a diagnoses is via the original doctor who made it.

    You are entitled to have a note however on your medical records refuting it.

    Other countries will be different.

    Your current Doctor maybe able to help you? However if they havent bothered reading your past medical history and dont know about this misdiagnosis - its not worth alerting your G.P. to it for all the reasons mentioned.

    If she does know about this past misdiagnosis then maybe she can write a letter to the disability to support your telling them its a misdiagnosis .

    A tape recorder /mobile phone may be of use either openly or privately.

    Also could you try to make sure you are not alone in these 'chats'? Your boyfriend or your neighbour.

    Its amazing how attitudes change.

    Your posts reflect with pinpoint accuracy what its like gettibg through the system.

    Its not you at all. In my opinion. I think you are doing really well.

    My Mother had all these problems for her cancer care and months of disgusting behaviour to try to get even her incontinence pads.


    Another example would be my water company. Do you know it took loads of correspondence - just to make them send me an email address so i couls deal with them that way.

    Why?

    Because they don't usually do this. Not Good enough .

    Their usual email for general customers was onky 1,000 characters long for heavens sake!


    So now if Disabled customers need to communicate via email - I have paved the way.

    The diificulties are coming because they are trying to mould you into their system and you cant have that because their system is not geared up to support you.

    They might be trying to screw you over re:the mental health label if they know you are making a complaint about them. This is y u need an advocate.

    I hope that writing it out on here has helped you get to sleep.

    Thanks for wishing me a happy new year ... you too..

    onward and upward.

    Golden :)
     
    taniaaust1 likes this.
  3. golden

    golden Senior Member

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    p.s. I have just started googling to see if i can find the Australian equivalent of The Consumer Action Group website in the UK.

    http://healthconsumersactiongroupwa.org.au/main/

    I havent got very far yet as i have over posted. The Consumer Action Group here provides templates, legal advice and otherwise little known or used law to help consumers/patients.
     
    taniaaust1 likes this.
  4. Lynne B

    Lynne B Senior Member

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    Brenda, that's a very interesting thought, that people are being difficult because of that earlier misdiagnosis. That would also explain why Helene is so determined to put it on the referral—because she actually believes it's correct. But are there borderline support groups? Alternatively, it might be possible to see a psychiatrist who can overturn the diagnosis.

    Tania, I can see that your first need is to get assistance so you can live properly at home—and that's proving hard enough! But I can see that also you do need an advocate to mediate between you and the government agencies and sort the whole thing out on your behalf. Does SA have a legal aid service where law students volunteer their time for free? Or anything like that? Just thinking, but I guess you really have to concentrate on your basic needs first. It's a big job you have ahead of you. Perhaps one way to help cope is to look back over the past year and consider the aids you have now compared to those you had at the start of the year.Then to set a goal of the things you want to achieve in 2014. If you keep your sights on getting what seem to be the most likely improvements this might help you feel you're actually getting somewhere.

    Best wishes, Lynne

    PS I've just read Golden's posts and she makes some good suggestions. So ignore my first para and read here instead.
     
  5. brenda

    brenda Senior Member

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    Even being just suspected of borderline makes a huge difference in how you are dealt with and will impact how much help is given with physical difficulties from coexisting little understood conditions like CFS/me. The problem will not go away in proving Aspergers either as they already admit multiple problems. Denying being borderline will not help either as that will be considered typical. You have to convince them and to do that will require expert help when one has suicide attempts, self harm, involvement with law breaking and violent outbursts in their history and l think that a PD forum might be a good place to seek advice. There may be programs to help people to accept the diagnosis and to change and get medical support once the condition is admitted to, l have no idea, but l have studied personality disorders due to my ex and l know what comes with that label and the prejudice against people being perceived as unable to change. In short, if this is the problem then l feel that another approach is necessary with advice from those who know much more about it than any of us who feel sorry for Tania being short changed with her physical difficulties.

    This is from wikipedia on BPD

    This is the sort of thing that might be affecting Tanias case.

    After doing a quick search, there is plenty of support out there on forums and therapists one can find locally for BPD. I am sure that many with BPD have physical conditions too and who have plenty of experience in getting help with those.
     
    Last edited: Jan 2, 2014
  6. golden

    golden Senior Member

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    http://aspertypical.wordpress.com/2...n-borderline-personality-disorder-and-autism/

    It seems common for psychiatrists to misdiagnose BPD when in fact an *Expert* in the Autistic Spectrum can pick out the correct diagnoses.

    And in fact just for being female could earn this BPD label.

    This link is just a dash of what I was looking for and is not the best, I am sure there will be better.

    Perhaps understanding differentiating factors would help in some way.



    Golden

    p.s. Tony Attwood seems like one of his centres maybe able to help

    http://www.tonyattwood.com.au/
     
    Last edited: Jan 2, 2014
    taniaaust1 likes this.
  7. taniaaust1

    taniaaust1

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    As Golden said it is very common for females with Aspergers to be wrongly diagnosed. (My CFS cousin has been labeled with "BPD" and "chronic fatigue".. not CFS thou she has got CFS. (Ive no idea if she has aspergers too as I dont see her enough but BPD is a huge waste basket diagnoses they tend to give to females when they cant work out what is wrong with someone (if they cant put a depression label onto them).

    Golden that is very good idea. I do need the backing of someone like Tony Attwood, I wonder if I can get some support (seeing I do have an offical Aspergers diagnoses via Autism experts) there to help get rid of the BPD diagnoses. (I'll put that one in my list of things I could try to help sort things out).

    I also feel like at this point that I also need the backing of a ME expert.. the Autism people as they dont understand ME/CFS.. it felt like they wiped their hands of me. They actually said I couldnt attend Aspergers support group as I had too many medical problems. This was said by AutismSA.

    I do have several "CFS" experts which can back up my "CFS" diagnoses but they dont believe ME and CFS are different and Dr Del Fante one time when I told him I get tremors when I overdo it.. said that isnt part of CFS (so those CFS specialists do not understand ME and its symptoms).
     
    Last edited: Jan 2, 2014
  8. taniaaust1

    taniaaust1

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    So true and hence why that past and wrong borderline diagnoses, I dont bring up with new doctors. A dr will shut down and wont even listen to you at all and judge things for themselves if you've gone and mentioned that.

    Years ago when I'd allowed the doctors to convince me I had BPD (along with my ME/CFS).. I hung out at BPD forums a lot. Those there thou didnt seem wrongly diagnosed and admitted they had BPD. I actually wasnt coming across posts saying there was misdiagnoses (thou Im sure there must be many.. the ones there were just glad to grab hold of something which explained their symptoms).

    I dont have a clue why you just said that to me unless you are suggesting Im not in acceptance of my past BPD diagnoses. I went throu 2-3 years of psych therapy with BPD experts (sometimes weekly..while I was very sick and falling asleep on the couch) due to that diagnoses (cause I believed the doctor it was the cause of my mood swings at that time (I was seeking what was causing major sudden mood swings, I didnt know at the time that it was food issues causing them!!!).

    I saw maybe even 5-6 BPD specailists and they all had trouble figuring me out and nothing they said helped me at all .. I even did DBT which didnt help me at all (which makes sense seeing I didnt have BPD after all and what I really needed was a complete change in my diet). I had several ended up telling me they felt they couldnt help me another kept on phoning a superior in the field to ask for advice on how to treat me seeing BPD treatment wasnt helping me at all.

    It isnt the issue.. the issue was doctors and psychs werent understanding where all my symptoms were coming from and many of my true medical diagnoses were being missed eg POTS, major food issues, the problem I have with my hyperinsulinemia which was going undiagnosed at the time due to not having tests etc etc.

    The issue was I basically had also an emotional breakdown for a while due to my severe ME being ignored and being in fear that it would end up killing me as I couldnt get help for it (thou I had several CFS diagnoses).

    What is crazy is that I didnt even develop the BPD major mood swinging all the time (what I know know were reactions to high insulin) until I was in my late 30s ...when if you research BPD you will read as its a personality disorder, its supposed to start in teens but noone of this others who put that label onto me considered that at all.

    BPD isnt controllable by a low carb diet like my issue is..

    Its completely illogical to label me with having BPD as clearly a food issue is not a personality issue.

    Actually in my experience with BPD forums they didnt seem to have major physical problems affecting them too. I was very out of place in those forums.

    Im very grateful to a leading doctor in insulin issues on figuring out what my mood issue was and getting my insulin tested. He knew just from my symptoms and other medical disorders I had that I had insulin issues but the test confirmed it.
    ..................

    Lynn.. yeah there are BPD support groups but back when I was doing DBT, I was too sick to be able to attend any support group like that (I was needing a wheelchair and not being listened to about that even back then.. no wonder I had the BPD symptom of "feeling ignored"). So at that time I just was hanging out in BPD online support groups resonating with them in some ways but not at all in many other ways.

    eg a BPD person may say they are feeling alone and abandoned but on questioning that person they actually have a lot of support around them eg family etc. It wasnt really going on like it was in my own case with lack of family support and help, hardly seeing my family, abandoned (FOR REAL) by doctors due to having ME/CFS etc etc (the amount of times a doctor told me he didnt want to see me for my CFS again as as CFS cant be at all helped). So yeah some same symptoms but I couldnt at all relate to their experience as theirs were only "feelings" and not actually happening in real life.

    eg to support that Im basically alone and could feel partly abandoned by my family. It is a fact that Ive only been to my sisters house who lives the closest to me eg 10mins away from me, only ONCE in the past 12 mths. She NEVER invites me over for dinner, never takes me over to her place etc. I personally think that is a valid reason to feel like my family isnt paying as much attention to me as they should and not at all abnormal to be feeling like they should be doing more.

    I was going three months without my daughter visiting me (thou she shopped in the town I was living in and it would of been only 5mins out of her way).. my other daughter ..hasnt visited me in probably 5 years (she didnt even come to the family xmas party my sister held. I havent seen my grandchildren of hers for a very long time). So yeah, I have good reasons for feeling as I do.. most would feel the same in my situation. This situation DOES make me feel alone at times.

    There is nothing worst then if one is needing home home and cant get it..so yeah I did feel alone and abandoned by servics who should be (and still should be) supporting me.

    FACT., when I got moved into this house via my family (only when I lost the first place I was being given to move into as I didnt have help to move so couldnt move in time).. very rare occassion I got family help. I then got dumped one could say. I'd chucked out lots of food before the move and didnt even have milk for days and no help to get that (this shouldnt happen to anyone, its very distressing having no help to even get basics).

    I WAS ALONE and without the help I needed (that was until my elderly friend came days later and helped me get very needed things..thank God Im seeing him even if he is married.. oh.. that is just another thing in which they use to help diagnose my so called BPD, the fact Im with a married guy). If it wasnt for him.. I would of been THREE weeks or more without being able to buy food (as the Disability service took many weeks before they organised a new home support agency for me).

    There is a huge difference between feeling something just due to a feeling as in the case of BPD people.. then those things really going on. eg I would get suicidal due to extreme physical pain or something else very very bad going on long term eg denial of my basic human needs etc ..where a BPD person can get suicidal for little things causing a mood swing. A suicidal person doesnt necessarily have to have a "personality disorder"!! The ME/CFS community has seen enough of ME/CFS people cracking under the pressure of this illness to know this.

    Its much like how someone who is in bed a lot may get diagnosed with having depression just cause they arent getting out of bed, while in reality they are physically quite sick and havent got depression at all keeping them in bed.

    Mental health diagnoses are wrongly being given to ME/CFS and patients with other illnesses doctors arent familiar with much due to lack of understanding of the other illnesses.
     
    Last edited: Jan 2, 2014
  9. taniaaust1

    taniaaust1

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    Helene from the state Disability service (DisabilitySA) rang me back today in response to my questions the other day to her.

    Actually I cant now remember what she told me... OMG thou it was only half an hour ago if that.

    I may have this wrong but I think? she said that the 2 hrs of support I missed on getting due to the public holiday, the workers going over time time, can be taken out of this. (Im very confused as Im also thinking Im remembering her not being sure about this and on the other hand think? (not sure) I remember her saying that Margaret (the person I deal with at the home support agency) was away.


    I think? I remember her saying that the physio would be probably away or did she say she was still away?

    Ohhh my memory is soo frustrating.. forgetting things so quickly.. even before I can get them down.

    One thing I do remember her saying, remember this as Im upset about it and this has given me a huge aweful adrenaline rush with the sick feel one gets when one is on adrenaline overload... is she's now questioning my POTS diagnoses.

    sighs..as if letter from my doctor saying I have it, along with the fact he's been treating me for it for over a year isnt enough.. She's still got to question it. She's making me feel like Im constantly on trial and she's stressing me out with all this. Im sick of being treated like every little thing I say could be a lie. :( If I had cancer would I be being treated like this? I think not.. its not right. I should not have to be constantly feeling like Im on trial.
     
  10. taniaaust1

    taniaaust1

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    oh I just remembered something else about the convo I just had with her. Well it appears that my latest test results I gave her when she was her .. last week? are not good enough. She wanted them actually signed!!! This is getting crazy.. my doctors not believed, my test results not being believed!! (when Ive NEVER lied).

    I told her I cant get them signed (yeah sure that the researchers have got time and want to be trying to advocate for me when Im just a study participant and not their patient) and was lucky to get these results at all seeing they are my results from a research study and not from a doctor I see and usually only given out AFTER the study is finished (I had to beg the study nurse for these).. they are named with my name.. and has the medical company they came from.. isnt that darn well enough!!

    Its not my fault my doctors do not do enough tests and I have to enter research studies (which supply transport for me to be in them) to get the tests I need. Crazily both my 24hr BP monitoring tests, Ive only been able to get done by joining a ME/CFS study...so if they want TEST PROOF of that abnormality (when doctors words arent enough) that is all I have.

    At this point Im quite upset at what is going on. I guess at this point seeing the Disability service is doing this.. they probably dont believe my ME/CFS diagnoses either thou I have several doctors and specialists supporting it. The states disability service does not want to think about ME/CFS causing disability and many problems!!!

    excuse my language but why am I fucking on trial.. Ive done nothing wrong. I feel hurt and angry and very stressed right now about all this.

    oh and the report from the study, she wants more detailed too. It isnt enough for her to see my test results (print out of all the BP monitoring) and then have the abnormalities they've labeled me with from the results listed on the report. For christs sake.. whats she want.. ALL the details are there in the report I gave her.. I photocopied 3 pages of test results and the summary of the diagnoses of my BP issues.
     
    Last edited: Jan 2, 2014
  11. taniaaust1

    taniaaust1

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    It isnt just that brenda. How Im being treated is typical for most with ME/CFS in my state. One ME/CFS specialist I used to see (he's retired now) said he'd never been able to get the state Disability service to help one of his patients and he'd basically given up on them doing so. Even the states ME/CFS society doesnt seem to be willing to fight this battle due to it being so big (the response I once got on the phone from someone there was "try not to worry, we all just have to wait till things change).

    Ive also spoken to many others over the years with ME/CFS in this state. Many of them cant even get a dr, let alone any support from the disability service who is completely unfamilar and naive about this illness.

    umm actually that could be a good idea if there was a state BPD support group here to ask that, but as far as Im aware there isnt. (there was DBT BPD groups but you had to be doing DBT throu a psych to be able to access one and Ive done that all in the past (DBT therapy, I was too sick to be able to attend the groups). and they ended up giving up on me DBT wise and telling me they couldnt do anything more as it wasnt helping at all, the BPD psychs quit on me!! (see my other post). I saw a lot of different BPD psychs so it wasnt about the psych themselves but rather that therapy doesnt work for me.. and I suppose that would be on my file too). So I dont even know how I'd access even a DBT BPD group here to ask seeing it is already a completely failed therapy for me.
     
    Last edited: Jan 2, 2014
  12. taniaaust1

    taniaaust1

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    Golden .. I was sorry to hear of your mother when you shared your story. These things with not enough care being taken of patients and there very lives.. is sad.

    (I may add some more comments soon to the posts previously expressed to me but right now trying to stay focused on what I need to be focused on).

    Today's update

    Ive had two phone calls back to my calls last week today (as normal people are trying to get hold of me at the same time so I end up having to ring them back).

    The physio (Jenny Wooden) rang re my wheelchair issues and has made a time to come out and see me on Monday 13th 10.30am (putting it here to help me not loose the time). She said we can write out instructions on the set up parts Im having the issues with and also take photos of exactly how it goes together :) (so hopefully that is going to really help, its so fiddly thou.. i can see a certain part goes in another spot but its getting it in there).

    The person who's been given my case from the Disability Advocacy and complaints place (I forgot her name right away) is back from holidays and hence rang back. She wants to make an home appointment with me too (seeing I cant get in there) and we are trying now to work out how to do this as she's in wheechair and my house due to not being fully unpacked with boxes over the place still, isnt suitable for wheelchairs!!! (my issue too).

    She feels that my issue is that I havent been granted any personal care support and only have domestic support and hence why I cant get any more support hours. She thinks I need to apply for personal care support. She said the food prep help would come under that. Anyway.. not sure how we are going to meet, hopefully she can sort something out (and she's ringing my GP for info.. which probably wont help much as my doctor has said on the very first visit I had to her that she cant deal with ME/CFS and I need specialist to be dealing with that.... and of cause i havent got to my ME/CFS specialists for a year due to my transport issues).

    She was asking me a lot of questions which I was majorly struggling to answer due to my memory issues (and it was at that point she said she'd ring my doctor.. how's advocates meant to help you if you cant even give them the details they are wanting to know due to ones brain issues? I spent all our phone call looking for something which my GPs name on it as I cant even remember my doctors name). I said to her..this is percisely why Im needing an advocate.

    I couldnt even remember that this Disability Advocacy and complaints person sent me forms I was supposed to fill out and send back (she says she did). I couldnt even remember if I saw them or not!!! (they were apparently with a letter with saying she was worker the place had given me but do not remember what else that letter was about.. I do remember vaguely a letter mentioning a name of someone). She told me I've sent her a letter by registered mail but I cant remember at all that or what it was about.
     
    Last edited: Jan 5, 2014
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  13. taniaaust1

    taniaaust1

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    OMG I want to swear.. Im so so frustrated about what is going on.

    Helene (DisabilitySA..state's disability service) just rang me and informed me she'd just put in an application with her manager for me to go and see my "CFS" specialist (he isnt a ME specialist) Dr Del Fante. Im like "WHAT"!!! She'd told me last week to wait a week and she'd sort out me getting to my allergist Dr Allan Gale (who I've already not long ago cancelled out on TWICE due to no support being arranged to get me there. She's then going ..well "you said going to Dr Del Fante was urgent".. Yeah it was SIX MONTHS AGO I first started pushing HARD about getting to him and still havent been able to see him . Ive now been about SIX MONTHS without my medical compression stockings which he needs to do the referal for (I"d been pushing for support to see him actually since the start of last year.. I just got desperate when my compression stockings completely ripped and I couldnt wear them no more. Without these, Im worst!).

    But since then... Ive had a MAJOR ALLERGY reaction which caused me almost to ring an ambulance (I probably should of done when this happened but I hate hospitals).. my mouth, lips suddenly swelled and my tongue was affected. Next time it happens (I dont know what I reacted too as I had breached my diet and had a piece of Pizza hut pizza) it could KILL ME. It's A PRIORITY.. that Im urgently should go and see my ALLERGIST. I cant get throu to her that ITS A PRIORITY and that i NEED TO PRIORITIZE all my medical appointments based on which ever is the most URGENT. Not having my support stockings dont risk my life.

    Saying something was the priority thing 6mths ago, doesnt mean it is now! (and she stupidly didnt seem to understand this at all).

    Why did she tell me last week she was going to arrange for me to go and see Dr Allan Gale my allergist.. but today ring and tell me she's arranged for me to go and see my CHRONIC FATIGUE specialist!!!

    I could cry right now... Im so frustrated.. The disability service.. Helene.. she's being in idiot.. risking my LIFE by not arranging an PRIORITY appointment for me..the fact that Ive been trying for maybe 2mths? for them to help get see specialist for a potentionally life threating issue is shocking (I NEED some urgent allergy testing). Anyway she goes.. we'll go and see your CFS specialist first!. Im goddarn so angry right now at the shocking way she's treating me.
     
    Last edited: Jan 6, 2014
  14. taniaaust1

    taniaaust1

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    ohhh...things are so complex. Why isnt nothing easier?

    I tried ringing both doctors involved (Del Fante and then Gale) to ask them if they could do anything about Helene and getting the contract changed to get me to Dr Gale, one had knocked off early, while the other had a patient with him so said he'd ring me back.

    I rang the ME/CFS support person for my area and had a big chat to him to calm down (I was crying and needed to talk to someone but had no idea who so it ended up being him.. at least alex didnt get a teary phone call from me). Of cause he couldnt do anything except offer me some emotional support.

    Then Dr Gale (allergist) rang me back.. he's going to ring Helene but she would of knocked off by now. Why I say things are so complex is that he started asking me questions seeing I havent got to him for a long time and when he found out that Im a patient of Dr David Michell (a CFS specialist/alternative doc) he told I have to make a choice between him and Dr Michell and said that he wont see me if Im having alternative treatments and that he doesnt at all like Dr Michell (said he makes a ton of money off the sick... which is true. Dr Michell does charge a lot. Then it was like he was delving into Dr Michell.. like as if wanting to gather evidence of malpractice).

    So now Im in another bad diplema. Dr Gale knows all my past and is an excellent specialist on my insulin issue (thou he's an allergist, insulin is his special interest.. (the only dr I know other then Mitchel who also specialises in this stuff). Dr Gale on the phone just told me that Dr Michell went to his lecture and stole his info!!!. (so now I feel like Ive been put in the middle of a war between two doctors).

    Dr Mitchell.. well he's not good at treating my insulin at all, I say this as his treatment advised was what already I'd tried and failed (and he ignored me when I told him I'd tried this already with another doctor.. Dr Gale). Hence I needed/need to go back to Gale so he could readvise my treatment plan with that. I also need him currently re my allergy issue.

    On the other hand Dr Michell is my specialist for my MTHFR and other issues I have (thou a GP he specialises in those areas). Dr Gale just run him down on the phone going .. "he's only a GP and not a specialist like me". **sighs I already do know that**

    So anyway.. Ive now been asked to choice between the two. If it wasnt for Dr Gale I'd never found out about my insulin trouble and been diagnosed (he's a forerunner in that field). but then I loose my MTHFR specialist (who's also dealing with my cortisol issue.

    :( What a horrid diplema to be in when I need both doctors/specialists (seeing they both have their own areas). If I go to Gale.. Im going to be forced to lie about being on supplements (seeing he's against any natural therapies and said he will not treat me if Im on them) either that or he wont see me... I'll be forced into lieing about planning to go back to Dr Michell in the future too. I feel sick just thinking about this (Im so against lying and dont ever remember lying to a dr.. I personally HATE those who tell lies.. I have a real thing about liers.. my mother used to lie to me all the time).
     
    Last edited: Jan 6, 2014
  15. taniaaust1

    taniaaust1

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    Sth Australia
  16. madietodd

    madietodd Senior Member

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    East Coast, USA
    Done! I was relieved to see that my email address and home address are not displayed.

    Edit: I chose 'do not display my name' and only my state and country are displayed.
     
    Last edited: Jan 8, 2014
    taniaaust1 likes this.
  17. Art Vandelay

    Art Vandelay

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    Adelaide, Australia
    Have you tried Dr Coyte? She was very interested in MTHFR issues when I went to see her and she's a lot cheaper than Dr Mitchell.
     
    taniaaust1 likes this.
  18. LucyS

    LucyS

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    Australia
    Yes Dr Coyte bulk bills so no cost there, but I certainly wouldn't say she was any sort of expert at all in MTHFR/methylation issues and treatment - she's really only knowledgeable of what she has learnt from us her patients. Dr Mitchell certainly knows more and has more experience in "treating" MTHFR but his methylation knowledge is also limited & yes he is extremely expensive!
    @taniaaust1 how did you get on with your Lyme Disease testing??
    Results, treatment??
     
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  19. taniaaust1

    taniaaust1

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    I should of warned that it does show name and country (but nothing else).

    edit.. I just noticed that some people on some of the petitions there have "name not displayed" when they have signed one, so there must be a way to not show a name there.
     
    Last edited: Jan 8, 2014
  20. taniaaust1

    taniaaust1

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    Sth Australia
    I have seen Dr Coyte due to my thoughts of having Lyme as I knew she was the lyme expert here. She was really good (did tests other doctors havent thought to do and was very nice) and thou my lyme test did come back negative, she still thinks I may have lyme. (I myself dont want to jump to conclusions as there is another two things which I may have which I fit and are hard to diagnose if my ME/CFS diagnoses was wrong). Dr Coyte would treat me for lyme.

    So much of my case does point to lyme (there is even ticks in my camping spot), my symptoms match perfectly even the weirder ones which I dont hear about hardly ever on these boards eg I had Morgellons for a while which a study now has linked with lyme.. (my gene testing when I analysed my 23andME results shows I have a rare double mutation which makes me more susceptable to getting lyme.. only 3% of people have that mutation). It's hard for me to say that I want to be treated for lyme when I dont have a postive test result (and I cant afford the even better test which would cost me over $1200 with also having to get it done overseas).

    Not long ago, I desperately applied for that Australian ME/CFS study interstate which was starting, looking into lyme and coexisting infections (I havent been tested for most of those thou I also have their symptoms) and begged the researcher to include me too but I missed out as he'd just got enough participants for his study and enrolled them. I could of soo done with being in that research study (joining research studies is how Ive discovered some of my other issues). If I'd known about that study 2-3 weeks earlier I think I would of got in (its frustrating to need more testing so much and not being able to afford it).

    I didnt know that Dr Coyte was also specialising in MTHFR... thank you for telling me that!! She may be a good replacement then for Dr Michell :) . Dr Coyte didnt charge me any gap at all (unlike the $100s of dollars one has to pay with Michell). I was seeing another MTHFR dr before Michell, Dr John Graham (but he's retired now) but he didnt help me at all as he'd put me on the wrong forms of things for it!! (Sadly 3 years of seeing Dr John Graham didnt help with with anything at all.. only just getting me onto the Disability pension I needed). So after a few years of wrong treatment I found Mitchell who finally did help (but he hadnt got to adjust all the things Im on yet so hadnt got to put me onto the right doses.. so Im still at his starting point).

    thanks to both of you, your info about this has made me feel happier.

    oh edit.. I just saw my brain got things wrong and that Dr Coyte only has a MTHFR interest but dont specialise in it. (that was the issue with the dr who I wasted 3 years on things trying to help it, thou he thought knew turned out he didnt know enough about it. I wasted so much money on things which didnt help me due to that). Having MTHFR has caused me huge issues, I had a deformed, disabled daughter due to me having this (similar to spina bifida due to my folate issues).
     
    Last edited: Jan 8, 2014

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