1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

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

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    Half the time when I feel like Ive got a fever and take it.. I actually do. Actually a hospital was the first ones who made me aware that I get fevers without even knowing I have one (as they pointed it out to me that I was running fevers when I was in hospital one time, nurses kept becoming concerned when taking my temp .. I ended up having to tell them not to worry about the fevers as I felt fine and they were normal for me due to the ME.

    Ive got a lot of fevers since the start of the ME (originally I used to always run extremely high fevers whenever I was sick with the ME).

    I have also been thinking of late about if autonomic issues could be involved in some of my fevers as I know they can affect temp regulation. I think thou it is likely that my fevers may be reacting viruses??? as I often also get a sore throat (recently too noticed I was having outbreaks of herpes with ME crashes) or maybe sign of inflammation as I also was almost in the abnormal range (on the border at times) with inflammation markers.

    But thanks for your post.. it is another issue to watch out for.. autonomic dysfunction causing fevers.
  2. Marlène

    Marlène Senior Member

    Messages:
    441
    Likes:
    210
    Edegem, Belgium
    For sure, it is a combination of everything together! I recognize everything you mention.
  3. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    Update.

    Im back to the Bowel specialist on Monday and also got blood tests to do then too... things "may" be under control now with that. (the answer to my issues seems to be having fibre daily and also 10mg Epsom salts every second day..so far with that.. Im avoidng using enemas and things arent prolapsing with that. Having Epsom salts daily as a maintence thing was too much for my system and swung things other way. It is interesting how my bowel wasnt sensitive to ANY dose of Coloxyl (double max dosing didnt work) but is very sensitive to Epsom salts (I can have it work maintence wise with less then normal dose). Seems these laxatives must work some how differently??? thou both work by som how causing peristalsis.
    Then I see my CFS specialist the Monday after,

    On the alternative side of things.. I also have booked in some some psychic surgery after I see my CFS specialist, with a very good healer I occassionally go to, I have an large negative energy which is breaking down and parts of the energy are lodging in my chakras so its annoying me. If I could get energetic clearer, maybe my health would improive? (I can only hope). Anyway.. I always feel emotionally great after a spiritual healing even if I are still sick with ME/CFS.

    Im really wanting my spiritual self back.. the bitterness I carry over how badly Ive been treated due to the ME/CFS is aweful and not really me Its like clouding myself. Coincidently I was drawn yesterday to do an online search for online group I used to be in but I knew the site had gone many years ago.. I was involved in this group (a dream study group who was close and they became like family) 10 years back, for a couple of years. Turns out a new site of the one from past times is being done and its only been online for less then 2 weeks. Concidence? no i dont believe it... Im spiritually being called back. Hopefully I can regain like my truer self.

    Im sad today .. should be happy but still feeling sad. One of my sisters is going to visit me for the first time this year. Thing is she told me she'd take me out to lunch so I got all excited about it ... I told her that it would be great if we an go to a certain restaurant as I know there is a meal that I like and which is ALSO ok for me to be eatting there (the food at most places is far too high in carbs for me to eat without repercussions and I dont like plain salad like lettuce). She rang today and told me her new boyfriend wants to go to another restaurant... and its one in which at times I cant get anything I can eat there.

    So she said I could eat at home first and then just have a coffee (I would of brought my own tea bag and sweetener) at the restaurant with them while they eat. I know thou that would of made me sad.. watching them eat very yummy looking food even if I'd already eatten at home, Id still be really wishing I could be eatting the yummy food with them. I said maybe she could pick me up and take me there to look at the menu and discuss the foods with the cook just in case there is something I can eat and would like there but bring me then back home if there was nothing suitable but she didnt want to do that (thou both restaurants are only 5mins away.. I just didnt feel up to trying to work out if there is anything I can eat there by ringing them and having a long discussion on the phone).

    sighs.. I hate having to be on a restricted diet. I really wish my sister would of agreed with us going to the restaurant where I know they have one thing I can eat without bad effects.

    I dont know if Ive screwed up my meds both today and yesterday.. right now Im not sure if I remembered to take the Florinef or not so are going to go and take some.. same thing happened to me yesterday so I dont know if Im taking double the dose of what I should be or not. (I really got to organise myself around my med taking better).

    I do thou also have some good news :) . I ordered a DVD cause is "building great sentences: Exploring the Writers Craft" (it isnt on correct grammer but rather on doing good sentences). Course is 24 half an hour lessons on this. Im interested in writing a book one day and hopefully this cause will improve how I'd write one.

    Anyway.. this course has come in the mail and Ive done the 1st lecture and enjoyed it :) . It has thou made me really aware of how I wouldnt be able to handle going back to my collage studies which ME/CFS interrupted, which I think at times of going back doing. Now I know just how stupid that idea is.

    I had to rewind the half an hour lecture several times due to my brain going slower then the great lecturer was speaking. I also had to stop and have a break after only 15-20 mins of the lecture and then continue on later. The course Im doing is from www.thegreatcourses.com.au (they do have nutrition courses too.. Ive no idea if they would be helpful to those who have ME/CFS or not).

    I really want to be able to one day look back at my time with ME/CFS and know I still bettered myself and did some things even if they are small achievements during this time. Its thou only cause I get the home support etc.. that Im now able to take more onto myself and do even this course in my own time.
  4. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    correction for my last post.. it was meant to say 10g of Epsom salts .. Im going to have to ask a mod to correct it.

    Update

    I saw the bowel specialist and he was happy with what Im doing with the Epsom Salt Laxative and the fibre and my blood tests for my electrolites came back good so it looks like im going to be okay on both Epsom Salts and Florinef :) (Id got worried just after bowel specialist had put me onto the Epsom salts as the medical sites say it shouldnt be taken with Florinef). So as long as things now stay okay on this treatment plan for my bowel issues, I dont now have to go back to him.

    I also saw my CFS specialist again (really hoping to have my POTS dealt with further as I'd had two collapses, one which put me into a dangerous situation.. onto a road, since I saw him last) but things didnt go as planned there.

    My blood test results had come back showing that very high cholestrol was even higher still. I'd been avoiding being put onto Statins for years but my hypercholestrolemia just goes up and up and my specialist, it had got to a point now where he really wanted to deal with it (He wants under half the level it is at now). So I ended up agreeing as I can see its no good just ignoring it as its going to need some kind of treatment as it cant just be allowed to consistantly keep going up every 6mths. (low cholestrol diet didnt work.. and neither did treating my hyperinsulinemia with low carb diet work. Taking fibre which is supposed to lower cholestrol too obviously isnt working).

    After he wrote a prescription so I could trial a statin drug for the cholestrol issue "Crestor" rosuvastatin 20mg, I then asked him if we could try to sort any of my other medical issues out more (1 tablet of Florinef isnt enough for my POTS.. I did accidently take 2 just before his visit and that seemed to help more) but he said "you can only trial one thing at a time", which is a fair enough statement and sensible so Im ok with that. He said to go back to him in 1mth and I need another blood test done before then.

    So I'll have to keep putting up with POTS collapses in the meantime. (he thou did say he wouldnt allow me to up the dose of Florinef and said he'd have to refer me to someone else for the POTS :( .. so once again.. Im in situation where a specialist cant cope with my case..due to too little knowledge of the POTS... as far as I know.. there is no one else I can see in my state for it so it will be interesting if he can come up with someone to refer me too..
    Ive already seen the autonomic specialist (pathology professor) at main city hospital before for it but she knew more about issues like pure autonomic failure so just ruled that diagnoses out.. (I knew I didnt have that to start with). She didnt know much about POTS and didnt even do any tilt table testing.
    ................

    Ive had 4 doses (4 days) of the Crestor. The first 2 days went well so I thought I was going to have no issues with this new med. Yesterday was a hellish brain day.. worst my brain has been for ages. Today.. well bad brain day too (someone picked me up and took me to the secoond hand shop sale. I brought some skirts actually FORGETING that when one buys clothing one needs to find out the sizes of it!!!.. so brought them without knowing the sizes or even trying them on (and due to it being a sale, they were things I couldnt take back) .. Im forgetting the most basic logic stuff. I didnt even realise what I'd done until a couple of hours after I got home, after I rested.

    Anyway.. after two bad brain days where Im not brain functioning to the point where Im incapable of functioning when out without help (huge brain gaps).. I suddenly realised maybe it was an affect of the new drug Im on??.. the Crestor (rosuvastatin). Sure enough when I then read about it.. I found out the following http://articles.mercola.com/sites/a...-studies-show-statin-drugs-are-dangerous.aspx
    I also have an offical diagnoses of metabolic syndrome .. and also have mito dysfunction (self diagnoses, very strong evidence of it due to the precise manner I burn out and the symptoms).. Im not surprise Ive probably reacted to Crestor. So Im now stoping taking it and hopefully my brain will come good again. (once I'll go again I'll trial it once again to see if these past 2 very bad brain days were a coincidence or not..but I think that's unlikely from what Im reading, I always seem to react bad to drugs which do bad things to mito.

    I guess I now should bring my medical appointment forward and tell my doctor I seem to be having issues and maybe we should leave the high cholestrol issue for the time being and focus on instead, what is being done next for the POTS. (I'd thought the cholestrol issue was going to be an easy issue to sort out with just a drug, hence why I allowed the specilaist to talk me into a month trial of that). Seems nothing is never medically easy in my case.
    ........................
    Overview of just how bad my brain was yesterday.

    My support worker, I told her to take me to the post office so I could pay a bill. We almost get there when I suddenly remember I have no money in my purse so I need to be taken to the supermarket to get money out.

    So she turns around and drives all the way back to the supermarket. I get money out and we drive back to the post office. I start to wait there (on my cane seat) but then perfumes start getting to me so I have to leave her in the queue with my money to pay my bills. After about 10 minutes (long quenue) , she get s to the counter but then finds out I gave her not enough money. I'd worked the amount I needed out wrong. So we drive all the way back to the supermarket for me to get out more.. and back to post office again.

    She waits in queue again (another 8mins or so).. once again Ive worked out my money wrong.. my brain was being so poor I couldnt add up right to work it out.. So we have to get money out at the supermarket a THIRD time and then drive back again for her to pay my bill at the post office. (at this point I'd asked her to do the maths for me)

    Frustrating.. after getting money out the third time at supermarket (very embarrssing as I wasnt even buying anything each time but my bank has moved so it isnt even in my town anymore), I realise Ive only got the mmoney out for the bills I need to pay at post office.. and Ive forgotten to get money out for something I needed to buy at a shop. By this stage Im far to embarrassed to ask to get money out a fourth time so tell my carer we are going to forget about getting the other thing I was needing and to take me straight home.

    It was terrible.. a job of paying a bill which should of been a 20 min job or less, of just getting some money and going to the post office turned into something which took about 90mins (maybe more as I then also needed to go to the loo twice). I wasted most of my support time that day just due to how non functional my brain was being and the usually quick outting which I usually would of been ok with.. well it ended up wiping me out due to it taking so much longer. I really cant stay on this Crestor if it is possibly doing me mito damage to the point its doing that to me, so hence Ive stopped it.

    Im now feeling nervous about having to go back to the specialist and tell him I believe it may of made my brain a lot worst.
  5. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    Sleep Drugs side effect

    For a month my sleep was starting to be better. I wasnt even needing to take melatonin every night but unfortunately Im now back to taking the melatonin nearly every night again.. and unfortunately finding that isnt always being enough. The night before last with only the melatonin, I didnt get to sleep till 4am.

    Last night Im unsure what I took .. I ended up in an extremely confused state. I know I took the melatonin and that it didnt seem to be working well... unsure if I then took the anti-histamine I take for sleep as well (doxylamine succinate).

    I woke up during the night to go to the loo but was in such a confused state (my brain wasnt with it) that I actually got lost in my bedroom (which is only 3m by 4m).. a bedroom Ive been sleeping in for the past 17years!!.

    I got of bed and was instantly confused.. my bedroom door is only 1.5m from my bed but the light crack under it was appearing 4m away. So I walked that distance feeling confused and reached for the door knob but couldnt find it.. so then Im trying to find the light switch.. couldnt find that either. So i went back to my bed and walked again to what I believed to be the door (still it was wrong distance from my bed). Another couple of minutes fumbling about, confused what is going on... I head back to my bed again and sit there trying to make sense of things.

    I tried a third time to find my door this time I feel my handbag holder with bags.. but my brain was so not working well that I couldnt even remember in what part of my room that usually is. Im lost to the point that I now have no orinatation at all so now dont even now know where to even find my bed again!! (by this time Im feeling scared cause Im so badly confused and lost.. and start to cry.. I needed to go to the loo and started to think I may have to actually pee on my floor as Im STUCK in my bedroom).

    At this point I also realise I have my doxylamine succinate pills in my hand (hence Im unsure If I took them). I ended up finding the bed.. .. then feeling my way about my room bit by bit and FINALLY finding my door. .. but I'd been stuck in the bedroom for about 5 mins or so by that time. Ive never been claustrophobia before.. but that feeling that was coming in by the end of being trapped.. well was a bit scary. Darn pills (fortunately they dont often do this to me.. probably about once every couple of months I really get my brain screwed up with them causing strange experiences of not knowoing if Im asleep or awake and things like that.. this time I must of been basicaly half sleepwalking I think but with some awareness).

    I cant believe I almost had to pee on the floor due to this. I almost ended up having a panic attack over it. I think I must of been trying to leave the room by my window and my closet door.
  6. xks201

    xks201 Senior Member

    Messages:
    610
    Likes:
    181
    High cholesterol means you are in endocrine failure most likely...the body is not converting the cholesterol to pregnenolone and then on to all the other hormones.
    taniaaust1 likes this.
  7. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    Update.. Todays CFS specialist Appointmen

    Im really liking Dr Del Fante.. He's very efficient as a doctor with me being in and out of the appointments so fast but always coming out with something new to try. (thou the speed of the appointments sometimes does my head in).

    I asked him today if I could try Clondine for the high noradrenaline/POTS/orthostatic hypertension (on top of the Florinef Im already on for the POTS) and he said yes and even knew what drug was refering too when I couldnt remember and hence just said to him it starts with a "C". (darn brain.. I had thou written it down and was still going throu my notebook trying to find the name). He's put me on a quarter of a pill of this and told me to monitor my BP etc and go back to see him in one month.

    After the last failed med trial, the very high cholestrol is being left in the meantime (Im fine about that) as he only allows one thing to be trialed at a time due to knowing how much CFS patients get bad reactions to things and hence need to start and trial meds slow... and I really wanted the POTS/BP issue sorted more first.

    I didnt bring up the strange leg/spine post excertaional symptom which kept me up nearly all night the other night.. as I knew he wouldnt prescribe anything else seeing Im starting the Clonidine trial.

    I did thou have time to ask him to fill in my electricity rebate form for those who have health issues in which heat/cold makes them worst, which he did.. thou he said he doesntd think I can get it by that as it states on the form its supposed to be filled out by a "specialist".. and of cause CFS specialists arent recognised offically as being actual"specialists"... so thou he is the top specialist for CFS in this state..as he's only a GP (and head of a wholemedical division).. looks like that isnt going to be good enough for this form :rolleyes:

    (i see another complaint to the Gov (or a MP). which is going to be coming from me when that rejection comes throu). The whole system is set up very unfairly as far as CFS goes...when our "specialists" in the field just arent recognised so cant be filling out the forms we need filled in. If we had MS we'd have a neurologist but instead we have a sucky illness which dont come under a set specialist field and many of us have CFS specialists who are just doctors.

    I wonder if our local CFS society can take up this issue with gov that those in this state are having with this... in some of the other Australian states things are working differently and CFS patients are having no issues getting electricity rebate forms filled out and accepted but in SA.. hardly any of the CFS specialists here, those who know about our illness are actual "specialists".

    ohh i just had a thought.. my allergist.. I havent been there for a while but he would qualifiy in filling out that form as a specialist, he knows some about ME/cfs, I wish I'd thought of that earlier.

    (the gastro I saw recently, he dont know about CFS so it may be difficult to get him to fill out of form saying im heat and cold sensitive etc and I dont have apointment to go back to him now that I have that side of things back under control re laxatives. My gyno, he knows nothing of CFS stuff either so wouldnt be suitable in trying to fill out CFS stuff on a form either).
    heapsreal likes this.
  8. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    Update

    Since my last specialist appointment I'd brought a new BP monitor after having trouble with three different ones Ive tried due to arrthymia when Im standing causing them to error out, the specialist wanted me to keep some notes of my BP but that is hard to do when the monitors wouldnt work everytime ones body is having issues.. I was getting a ton of frustration from all the erroring out.

    Im soo happy with this new monitor...unlike most monitors, it can cope with also those of us who get arrthymia (irregular heart beat) with this illness (note..something I still havent been diagnosed with due to doctors/specialists not testing me while Im just standing!!! which is when it happens. I cant get anyone to give me a tilt table test..thou 2 standing tests have been done by my specialists.. one in which showed orthostatic hypertension of 170 in 1 minute of standing.. I had to stop the test at that point..on that occassion specicalist did note my irregular heart too.. and refered me on to another specialist who didnt do a tilt table test and did nothing).

    Its been a 4-5 year saga trying to get my orthostatic hypertension BP/POTS/arrthymia/narrowing of the pulse pressure properly diagnosed and treated... I probably have NMH too as Ive once noticed on a monitor in the past along with getting symptoms, a very sudden huge BP ditch. I dont understand why doctors are ignoring such conditions which are so easily testable to see!! yeah they cant often see symptoms in CFS..but if they tested, they can see these!. There is no excuse to be ignoring and not testing properly such things and then doing whatever treatments necessary to help. Why does heart clinics Ive been sent too.. NEVER do the standing tests Im needing?

    For more on my monitor and some of my llatest readings http://forums.phoenixrising.me/inde...ed-out-readings-bp-monitor.19251/#post-294668

    So Ive been now getting a good grasp on how my heart and BP is currently while on 1 tabet of Florinef.. and also testing things with and without my graded compression to thigh tops support stockings (which have a pressure of about 22-32). 3 out of 3 poor mans tests I did (on different days) showed up POTS when I havent got my stockings on... usually showing up around the 8min mark (before Florinef it usually showed up from the first minute).

    I stopped standing at the 10 min point so dont really know how much orthostatic hypertension Im having currently as that usually manifests for me sometime after that and I sooo hate doing those poor mans tests. (sometimes will wipe me out for most of the rest of the day).

    With my stockings on.. only 1 out of 3 of the poor mans tests I did showed up POTS. I slept last night with my stockings on and did a test first thing.. woke up thirstly this morning thou I do drink during the night and it did then show up with a heart rate increase of 35 thou my heart beat on waking this morning was 17 higher then it often is. (without my stockings the POTS is far worst).

    I made myself keep standing there longer then the 10 mins this morn as I really did need to find out if I still are getting orthostatic hypertension before I start the new drug Clonidine. By the 18 min mark.. I was showing orthostatic "dystolic" hypertension which is also thought to be caused thou blood pooling in legs (with the stockings till on :( ) and was STILL showing up the POTS at the SAME TIME. Starting BP reading on laying was 106/65 .. and with just standing it went to 120/89 (I stopped at this point, it may of gone up further had I continued) .. a dystolic standing increase of 24. So it looks as if choosing to trial the Clonidine for POTS and orthostatic hypertension may be a good idea.

    Im kind of worried thou .. this is an area my specialist doesnt seem to have any or much knowledge in (orthostatic hypertension of the kind the person also has low readings at times too). Its possibly a case of the blind trying to lead the blind (Im very happy thou he's listening to me and my ideas of what I could possibly trial for it). Clondine is contraindicated for those who have an irregular or slow heart beat as it can further slow things down (its a hypertension drug.. my BP ditches during the night to my dystolic being in the low 50s). Last time I was there thou my specialist found out when he looked it up, that it can balance things..so fingers crossed it is going to help and not cause me to pass out.

    nervous or not.. Im going to start trialing it today, Im desperate to have my BP and POTS under some control so Id be far more able.. I just WANT to be able to leave my house alone rather then only being able to do so with another with me in case I collapse.. (if i dont show up again.. realise its probably put me in hospital or killed me... yeah Im so nervous about this trial.. but I cant get what would probably be a safer option of saline IVs. My specialist says he doesnt know how saline IVs could be arranged .. so this has left me in the situation where I can only trial potentially dangerous drug after drug.. and the drugs now Im trialing have very low odds of working. Saline IVs according to a recent large patient survey have thou a 75% change of helping those who have the issues I have (with only a 4%? of patients having a negative experience with them).

    This shows a HUGE issue with our medical system which prefers to support pharma companies with giving patients all their drugs but wont support patients with therapies far more likely to help their cases and which could be less dangerous. Its the medical professions lack of willingness to give me suitable treatment for my POTS (the IVs since the Florinef and stockings arent helping as much as I need) which is making me mostly housebound.

    Maybe I should take my case to a health minister? but on the other hand I havent even had a tilt table test done to actually PROVE what Im saying (as they wont do it, the big hosptial actually has gotten rid of its table).. the system is leaving me in a huge hole. Im just fortunate I do have a CFS specialist who is trying to help me and is allowing me to trial medicines to help the issue and which has helped me a bit. No one should be left basically housebound when they have an issue with is probably fixable!!!

    fingers crossed the Clonidine is going to help me and not harm me. (im fed up with trialing things which have not much chance of working).
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    Clonidine

    Yesterday morning I took my first dose of it for the POTS, orthostatic hypertension (at times when standing eg up to 170/138 when I get an attack of that) and high nor adrenaline .. CFS specialist told me to start trialing it at only quarter of a pill. Yesterday I noticed no change in my BP due to this.

    This morning I get up, do things around that house (which can put my BP up) and took a quarter of a pill of it and 5mins later took my BP when standing after doing the things (that is when I get the most issues with high BP when it occurs)... I was shocked to find that my BP has dropped right down to 88/57 (its usually 110/73 or way over at this point). Now Im concerned what it could be doing when Im laying as that is when my BP is usually very low. Im also very concerned as I just took my second dose of this drug.. only 5 mins before I took that low reading and if this second dose drops it at the same rate.. its going to make me end up in hospital. :(

    I have been slightly dizzy this morn but nothing like the dizziness I get when I go triggering the POTS and have that affecting me (I havent done a poor mans test yet to see if this drug could be helping the POTS).

    I'll be monitoring my BP the rest of today.. and hopefully it dont go dropping much lower. If I have a pass out at home, no one is due to come and see me again till late tomorrow morn.. so could end up laying all night on a cold floor (last time I was unconscious on a floor overnight I ended up with double pneumonia and having to be on an antibotic drip for almost a week).

    sighs.. just wish my doctor would give me saline IV instead of all this desperate experimenting with things which are unlikely to work.
  10. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    Maybe this drug will work after all?

    Ive been taking my sitting BP all day and when Im sitting, it is now always higher then the one I took this morning when standing..my sitting BP is staying around a nice healthy 125/75.

    (where's before.. my sitting BP was lower then my standing one but higher then my laying one.. so its appearing my whole BP pattern is being shifted around).

    So it looks like the clonidine may be just balancing things and only dropping the side of my BP which I was hoping it would help.. the nor adrenaline which causes it to overly rise on standing. :) . Its like Ive been taken back in time... before I got the orthostatic hypertension. (Im yet to take more readings while standing and havent taken any yet after laying for a while).

    Im far less concerned now then I was earlier today when I saw that standing BP.
    merylg and heapsreal like this.
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    Its almost 5am in the morning right now and I havent gotten to sleep yet :( thou Ive been in bed since 10.30pm so I just got up. Looks like my sleep issues which were going better past few months and had decided to be managable with melatonin alone... have gone and completely screwed up again. I was still awake at 4.30am the night before too, so didnt get much sleep.

    So Im back to having to take Doxylamine succinate on top of the 3mg of melatonin (the other night thou the doxylamine succinate didnt work so well at my original dose so it looks like I'll have to increase it to the highest dose I take at times). Its a worry as I build up tollerance easily to both the doxylamine and also to temazapam so really trying not to take either but if I dont take something else Im going to be being awake for 36hr periods again or more.

    I realised tonight that I have a specialist appointment this mornbut have asked my boyfriend to cancel it first thing in the morning as im going to be too wrecked to go. Also not prepared for it anyway as I'd been thinking it was next week. Hope the specialist isnt going to mind an on the day cancelation from me yet again.

    Im hoping my ME isnt getting worst again. Past few weeks Im having more like narcolespy post exertional attacks, falling asleep while doing things. I only like get a few minutes warning Im tired and then Im alseep. Then I wake up a short time later eg 10-30mins as I dont sleep wellduring the day, only falling asleep again over and over. This can be happening for several hours thou sometimes it passes after a very short sleep. This issue isnt due to my current severe insomina issue as my the severe insomina has only been back past few days.

    The clonidine appears not to have worked for my POTS either.

    I really really hope Im not getting worst. Im not sure yet, maybe Ive just been doing a little more (but I do seem to be being a bit worst.. it seems to be taking me 6 hrs longer recovery time after stuff then it usually do. Im "trying" not to worry about it.. hoping its just a temporary thing as its really going to be disasterous to me if Im worsening as I really dont do much on my feet now.
    heapsreal likes this.
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    Fill in home support worker gets a crash course in ME people

    My regular home support worker needs surgery so was away seeing a specialist so I got a fill in (a young girl who is doing home support work while also putting herself throu nursing school).

    Things were going well at first.. she did my dishes and then cleaned up all the dried up spilt milk all over the kitchen (half a litre of milk over the floor, splashed up the cupboards, I'd dropped the litre of milk when tired and was too far gone to be able to clean it up so it had ended up dried there so was an on hands and knees scrubbing affair).

    Then we went to go shopping.. I couldnt find my phone thou I'd had it that morning. We both spent 20 mins looking for it (house is neat due to the home support but we still couldnt find it). To top that off I also had lost my diary/address book which has my phone number in it so she couldnt ring my phone to find it either. So we ended up heading out without my phone.

    We reached her car outside when I realised the keys I had in my hands were the wrong ones.. ME mind fog had me grab a set of keys I havent used in over a year.. so I'd locked my house keys in the house and couldnt remember IF I had a spare key hidden somewhere outside or not or where it would be. I suspected my boyfriend had hidden one outside for me...but due to me loosing my phone (and my address book so we didnt have my number to ring my home).. well now we couldnt ring my boyfriend to find out IF there was a spare key and where it was. I couldnt remember what he'd said in the past about it.

    So by this time Im distressed as locked out of house with no way to get in with my support worker also wondering what in heck we were going to do .... so in desperation the support worker rings the agency to ask by any chance they had my boyfriends phone number (I didnt think they had it as we dont live together and only see each other a couple of times a week) ... but FINALLY I got lucky and it turns out he gave his number to them some time. After an hour we managed to get hold of him and LUCKILY turns out he had hidden a key outside my place knowing what Im like. (I'd have never found it if we hadnt been able to ring him). So issue was finally solved. :D He also gave us my phone number so we could find my phone.

    The phone ended up being IN A WARDROBE IN like a A SHOE BOX!!! I'd put the box I keep my support stocking stuff in and unknown to me my phone had fallen into the box.. it was hard to find even with ringing my phone (6 calls to find it).

    Guess she will be one day one nurse who will now have more of an idea of the day by day struggle ME people go throu.... she's not going to forget her short time (2.5hrs) with me in a hurry.
  13. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    New hormone, CFS, MTHFR polymorphism, insulin issues Specialist

    I went to a doctor who is known as being like a wonder doctor (who fixes many people who other doctors havent been able to help esp as far as hormone stuff goes). Very expensive $350 for 90mins but hopefully I'll get a bit back on medicare.

    He went over my old test results and started writing a list which as this list got longer and longer, I assumed he must of just been making some notes but. it actually turned out thou he was listing all the things wrong with me which he could see other doctors had missed or which I wasnt being treated right for. (3 of the issues I already did know I had and that doctors werent treating right but the others I had no idea I either had or didnt know it wasnt being treated right).

    This is what he listed which needs treating or has been recieving wrong kind of treatment.

    1/ hyperinsulinemia

    2/ subclinical hypothyriodism

    3/ MTHFR gene defect (I was right.. my specialist was giving me all the wrong supplements for it..ones my body with this defect wouldnt be able to respond too). Told I NEED to be taking methylfolate and methyl B12.

    4/ "Bad" Testosterone (apparently just like there is good and bad cholestrol...there is also good and bad testosterone... and my body is converting my good testosterone into bad testerone (hence why I had a lot of hair on my face.. I get a beard but at the same time have low free testosterone (something which had confused my gyno who had tried to treat my low testerone with a testosterone implant which I then responded badly too.... does that mean my body responded to it just by then making more "bad" testosterone?

    5. Adrenal malfunction with low cortisol and hormonal imbalance

    6. Vit D3 deficiency.. (thou Im finally just within the normal range at 60 something.. he says my levels are still too low and the Australian lab minimum recommendation is going to be upped to 80 as it is now recognised as being too low whereas before it was 60. He says thou for someone with all the issues I have that my D3 should be taken up to 120 for optimin health. He said that Im using this up fast due to hidden infection inside of white blood cells.

    7. Polycystic ovaries (he was shocked no doctor had put me onto metformin for that).

    8. Collagen - Connective Tissue Disorder - auto-immune reaction to collagen (hence my frozen shoulder before I was even 40 years old.. abnormal healing response.. also he says those who have had FM also often have this kind of collegen -connective tissue disorder thing going on which can be coming and going (he says mine is just currently dormant right now.

    9. Adrenal-Hypothalamus-Pituitary Disorder
    ........

    He said that my hypercholestrolemia (which doctors had tried to treat but couldnt due to me reacting to statins) is due to my hormone issues and he'll treat that throu the hormones. He said that my low iron storage would be happening due to infection going on in my body.

    So the plan is now to have blood tests all done (as he wants up to date tests to see what my body is doing since those old tests.. some were many years old (including another 2 hr glucose tollerence test with insulin).. Im going to have all that done on Monday.. He said it has to be done ASAP as next week our government here is bringing in new regulations re medical tests.. and only 3 tests can be done free at a time when that comes in or otherwise you have to PAY for them. (he's having me do 27 different tests on Monday). phew!! :balloons: so Ive gone to him just in time to get all these tests redone.

    This new regulation is going to really be horrible for anyone living in a country area like myself in which one needs to go and get another to drive them somewhere else often to get tests done .. just imagine how many times one may have to go back to get blood tests if only getting 3 at time done!!! (that could of been 8 different trips to the next town for me)

    I think I will run into issues with this "wonder doctor" at some point as he dont seem to believe in ME (he seemed to think that CFS is other things in the body going wrong..often many other things together and that ME is when CFS is even more going wrong in the body) and also he has no idea about POTS.

    When I was drinking in his clinic (I forgot to take my Florinef this morning so got dizzy just sitting in his clinic) and said I had to drink a lot due to POTS.. he responded that I shouldnt be "thinking" like that and said that there is nothing which proves that drinking more fluid stops POTS and the dizziness. I dont need any lab test proof that my blood volume is low as fitting POTS diagnoses based on what my heart does and experiencing that drinking a lot does STOP me from passing out at times is proof enough for me. I do and WILL collapse if I dont keep my fluids right up. (it reallly confused how a doctor could be so intellegent about all those other things but then give me a little bit of a hard time over the POTS and needing to drink.

    So unfortunately this new CFS doctor is going to be no good for my worst symptom (unless its being caused by one of those other things) which is the POTS... but I really think he may help a lot with some of the other issues I do have.

    So its now blood tests Monday.. then I see him again in 3 weeks. (I think he said he'll phone after he has the blood tests with the first part of a treatment plan.. he didnt want to decide on what to work on first till he has up to date tests)
    Valentijn, heapsreal and merylg like this.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,136
    Likes:
    4,391
    australia (brisbane)
    Sounds promising tanya, he might not be as knowledagable with POTS but like u said, maybe treating all your other dysfunction will improve your POTS.

    cheers!!!
  15. madietodd

    madietodd Senior Member

    Messages:
    2,421
    Likes:
    1,600
    East Coast, USA
    Yes, this sounds great. I'm thinking he might just resist the label CFS, but be perfectly willing to treat all of your individual issues. Also, I don't hear him saying POTS isn't real...........he's just disagreeing with how you deal with it. Well, OK, later you can ask him how you CAN treat it better.
  16. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    Hi, Tania.

    This is the first time I see this post. I have only read about your last visit but can't wait to read the rest of it.
    Thank you for doing this.

    BDF
  17. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    A run down on some of the Sth Australian CFS Specialists

    I now are placed in the following CFS specialist situation where Im going to have to see 3 different CFS specialists at the same time..something I was really hoping I wouldnt have to end up doing (as no one is dealing with everything). I have the new specialist which of cause Im going to follow throu with but who obviously has very little understanding of POTS (if he knows what it is at all), he also doesnt believe in hair testing.

    I took a form I needed to get filled out to get hair testing redone as its been over a year since I last had it done and Ive been on supplements trying to fix the things found on that ever since and want to know how its going but Dr David Mitchell said he dont beleive in hair analyses so I still now need a doctors indorsement for that .. its much cheaper to get done if done with a doctors endorsement). That's okay with me if he dont believe in it but the findings on that test and supplementing what that test said i was deficient in (molybdenum.. in form of molyzinc supplement) and what previous specialist (Dr John Graham) then told me to take did help my brain a bit (this happened right towards the end of so many years going to him..so by this point i was soo fed up with not having had treatment help before this). The selenium he put me on due to my hair test results, I too think helped. . This was the CFS specialist 3 CFS specialists back from latest one.. not my last 2 before the new one but the one before him). I also want to know if my copper level is now lower on a hair test (been working to get that down and this time made sure that there will be no hair dye coming into the test at all.. just in case that had anything to do with the high copper result).

    So I now need to go back to the CFS specialist I used to see (Dr Graham) re hair analyses test (IF he isnt now fully retired and still seeing old patients of his). I stopped seeing him right at end of last year, after 6? years as he didnt help me much at all treatment wise (he was great for forms thou and I didnt ever feel guilty for needing to ask him to fill in forms) but he didnt listen to me about so many things eg on to test me for POTS, he ignored so many of my symptoms. He was was focusing instead of getting me emotionally/mentally stronger (but didnt tell me that so I kept on going to him trying to get my ME treated without luck)..but he's the only doctor I have which will support the hair test. He didnt medically try to treat my severe symptoms, leaving me with severe insomina and so many other nightmarish things.

    Then my last CFS specialist (Dr Del Fante) who ive been with since close to start of this year (and was seeing every couple of weeks there for many months).. I started seeing Dr Fante after seeing the CFS specialist Dr Buttfield for 2 mths just before he retired.. (Dr Buttfield was the very first CFS specialist to seriously start trying to help my symptoms).

    Dr Del Fante is a very decent doctor but things progressing way too slow for my liking with trying to treat one symptom at a time (he doesnt like doing more then that soo its a VERY SLOW process throu him). As I get and have had over 90 symptoms with the ME.. this treat one at a time approach is highly frustrating.. and in ten appointments with him.. we've only managed to get ONE symptom fully resolved (to the point it isnt an issue no longer.. unfortunatley too he had to refer me to yet another specialist to solve it) and another symptom only partly resolved (to which he's now considering sending me to another specialist for). He IS really trying to help my symptoms but most of my ME symptoms are beyond a CFS specialist level (hence why Im big on that ME specialists need to be being trained in ME.. the severity of ME symptoms puts nearly all CFS specialists at a loss so they then need to be refering one to so many other specialists)

    Its hard when all these appointments are in the city and I live in the country (all my specialists are in the city).. its hard to be going soo often and working on things so slowly. I dont want to be trying to sort out just symptom management and getting them in some better control for the next 10 years. :rolleyes: . I need to stay with him thou as he's the only one thou who knows a bit about POTS.. (he has a good manner towards his patients.. I found Dr Mitchel thou a bit harsh.. he actually told me off and lectured me for saying the word "but"). Dr Del Fante thou missed seeing all the other things this new specialist has seen from my abnormal test results (not so up with recent science etc or well read as Dr Mitchel seems to be)..He also only does symptom management (so no experimental things and things just to the aussie ME/CFS recommendations)

    So anyway.. looks like I'll be having to see 3 different CFS specialists to try to sort things (on top of all the other specialists who I usually end up being sent too). They all have their pros and cons. Right now Im trying to get my head around how Im going to do all this.. (I cant travel a lot and can only manage a visit to the city once a week with another driving me if Im going ok). Im not looking forward to seeing the CFS specialist (Dr Graham) who would be willing to approve the hair test again as Im still angry with him for me putting so many years seeing him when I thought he was going to really try to help my symptoms but just kept on not treating. He was very nice and I trusted him to try to help.. his lack of not doing and not making me aware that he just had his focus on my mental health fells like a betrayal

    *** I've just added the doctors names in as I thought that there may be people who could read this in my state who may be wondering what various doctors are like and who does what. Maybe it could help someone find the right CFS doctor for them as these are all good for different things.

    If anyone in the government health system ever reads my post.. note just how much all the doctors visits I do .. many of them useless as the doctors dont know how to treat me, this is costing our system.. all the referals on to other specialists.. all the doctors who have said my case is too hard, having to go from doctor to doctor etc etc. All cause no one is training our doctors in ME and there is no specialitiy field for it which it comes under so no specialist is trained to be able to deal with most of its severe symptoms. (one day Im going to try to work out just how much my illness has costed the goverment). We need good ME research being done and the government putting money into this illness.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,136
    Likes:
    4,391
    australia (brisbane)
    When it rains it pours ;)
  19. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    UPDATE

    Ive had all the blood tests done and now are waiting to find out what the latest results are. I rang back Dr David Mitchells office, end of last week to get my results and the treatment protocol like he'd told me to do but he hadnt gone throu them yet (which I was fine about). I rang while my boyfriend was here so he could listen in cause I confuse things and wanted another to hear what I was being told about the treatment plan. Ive been in hospital once this year already and put on a drip as I ODed as I confused my drugs and treatment and dont want to be risking doing any more drug confusion things.

    I also cant be on phones too long as I find it extremely hard to keep my concentration there after a short time (so need my boyfriend present so he can take over once my brain like shuts down). So when the receptionist told me he hadnt looked throu the test results yet and she'd get him to ring back later to give me the results and the treatment plan he said he would... I asked if he could instead post me out the test results along with the treatment plan.. so she said she'd ask him.

    She rang back today saying no... he never does written treatment plans for anyone :rolleyes: so I have to get it and the test results by phone. I told her I didnt want to without another being present with me to make sure I was getting it right so are going to have to ring back when my boyfriend is over again. I told her that I'd be slow on the phone too as I cant follow fast phone convo. (she was talking too fast for me while telling me this so I had to get her to slow down). She then said that they want someone to be fast on the phone when taking down the info so she wants my boyfriend to do it and to get him to sign something so he can do that and then he can pass all my new specialists said onto me. :(

    Are I being ridiculous in being unhappy about that? Its making me have to be even more reliant on my boyfriend then I already are... Im already having to rely on him FAR MORE then I wish to be (we dont even live together and dont even have a normal relationship). Im as independant as I can be.. as I truely hate this. Im hating how they want him to get all the info for me and then just tell me all which was said.. cause doctor dont put in writing anyones treatment plans. I hate being competely reliant on another, which is even worst when the other one is having to be reliant on..cant fully be there for you anyway.

    I wish Dr Mitchell understood that instead of helping me be more independant .. little things like this make me be just more reliant on others like I dont wish to be. It is a little thing but when one isnt managing to do much oneself in the first place.. this dont help my confidence when I have to be more reliant on others (having to be reliant on others I find saps life confidence and of cause makes one even more needy).
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    The weather is warming up here in Australia and the whole time Ive had my support worker, she's been wearing no deodourant for me... so today.. took her shopping (well she drove me), to find a deodourant she likes but I wont react too. Im not 100% sure yet if Im going to be okay with the natural one she's picked or not as sometimes I dont react to them immediately (thou the worst I do) but we'll see.. I paid for it so if its no good its no big deal and we'll just try again.

    There is something weird about the Australian Organic Biologika brand (certified organic) of roll on deodourant.. Im fine with the Vanilla one but react to their other one they call "live it up".
    I think this is weird as they appear to have the same ingredients listed or have ingredients I know Im okay with (eg the one Im reacting to has sodium bicarbonate in it as an extra ingredient but I know im fine with that)..... They must be not listing something they are putting into their other one or one of their suppliers of their ingredients is supplying them with something which has another thing in it which they dont know about. Maybe I should ring the company and tell them that there is something not right about that one.

See more popular forum discussions.

Share This Page