Discussion in 'General Treatment' started by taniaaust1, Dec 28, 2011.
"Simple" brand make a roll-on anti-perspirant with no perfume.
Update... Test results back
I got my latest blood test results by phone today which I put on loud speaker so I had my boyfriends help of taking down the notes. After telling me they wouldnt post me treatment plan and would only tell me on phone, now they have decided to post me the treatment plan, only cause my phone was bothering the other. My phone reception is very bad in my house so my phone on their end (my end was fine) was cutting in and out the whole time.
My test results had a few surprises for me as well as having many of the abnormalities I thought I'd still have
- High Insulin (worst I think then before.. so I guess that means Im heading even more towards diabetes even with being on a very low insulin diet for a year which is supposed to halt or allow my body to heal and hopefully some time allow my body to manage carbs in a normal way. One of my home glucose tests the other day said I had a glucose reading of 8.9).
- Very low D (I didnt get told exactly what it was but it sounds as if its dropped back down again to a previous level)
- Thyriod borderline low (specialist now wants me to take my morning temp before rising for 5 days). My body temp I know years ago used to indicate thyriod issues in the morning with extremely low body temps but it dont tend to do that now as far as I know (improved in that area past few years)
- Folate (low)
- Iron (ok.. now that was a surprise as I was expecting that to be low again)
- B-12 Good (well it should be.. I was having 2 B12 injections a week for ages and only just have stopped doing that)
- Cortisol (High) .. That one was a huge surprise for me as my coritisol when it shows up at abnormal range.. its previously always been low.. but now its high. I wonder what that means .. could that mean things have improved?? could it mean that my adrenals arent so burnt out as they were so now able to have a high level insteand of a low level?
So now I just got to wait for my treatment plan to turn up in the mail to find out what we are doing next.
The housing trust maintence person unexpectively showed up today, due to the last house inspection I had (which the housing trust maintence guy actually put in a thing to them after his inspection, saying the whole roof of this house needs replacing) but they now just want to do a patch up job and paint my house ceilings. The painter guy who came today said they will be using the very bad oil based paints as the ceiling is so bad (he said otherwise they could of used another kind..thing is..they ignored the situation till it got this bad), so Ive had to tell him that there is no way he's going to be able to start painting this house with those kind of paints, while Im living in it. (the guy was very nice).
I rang my home support agency today, to find out how many support hours that I didnt previously use (cause they took ages to find me a support worker so hours were accumulating) did I have. I got told bad news there.. they changed the rules of it this year so what the disability services guy told me when they first put me onto the agency is all wrong. The new rule is that any accumulated unused support hours now get completely removed each month. So one also now cant accummulate hours now when one is going throu a bit weller patch and save them for a bad patch. It sucks that I lost due to new introduced rules of this year (and wasnt told of change), HEAPS of hours I thought I had there to support me in times of more need and would of used up to help me move.
I hope that dont happen to me with anything else, seems to be an ongoing theme for me of late.. rule changes which I arent told about screwing things up... caught out and couldnt go to free dentist due to new change (removing of the dental scheme for those with chronic illness) which I wasnt told was being changed until it just had and then it was too late (or I would of gone back to dentist before that happened) Now I have to go to private dentist Im going to have to pay, due to that. .. and now that thing with a rule change today..and loosing all the support hours I had spare there for me. (Orgs and our gov.. should have to tell people before they go and change things if it will be affecting them!!)
I have a headache from today currently (also hadmy boyfriend over due to needing someone here to make sure i got all the info from the doctors office call.. I gift wrapped a big present for my nanna today.. did a lot today). By 4.00pm I ended up bed with extreme mental exhaution to the point where I couldnt do anything and wasnt able to get back up till 9.30pm which then has screwed things up for me tonight as now Im wide awake which actually isnt all that unsual at this time for me anyway (but with a headache).
I was not well enough to be taken shopping today after doing those other things.. so just have to make do with what I havent run out of yet. Home support person isnt going to get to take me shopping on Friday either as all my support time will be being used to get me to a medical appointment so I now wont get to go shopping till next week. (Its times like this I could of done with using those extra support hours).
Im being picked up tomorrow to visit my nanna for her birthday..its been about 2 years since I last managed to get someone to take me to her house for a visit, so happy that a family member is actualy going to help me out this once with this (they dont usually agree to taking me places). Im sooo looking for that visit, to actually get to go visiting nanna for her birthday (thou know I probably should be resting tomorrow)
Update includes Treatment Update
I had a great time at my nans thou was more then ready to come home and getting uncomfortable after a couple of hours due to visiting and being upright being tiring for me. Fortunately I havent crashed from a busy couple of days (laying down in between the activity).
Today I got in the mail my first treatment plan from CFS specialist (Dr David Mitchell), Im happy its promptly come after our phone call . The changes which we are making now are:
1/ instead of hydroxy B12 injections I sometimes take .. Im to take Methylcobalamin High Potency 5000mcg chewable tablets (he recommended "Natural Factors" brand). Due to the MTHFR polymorphism I have.
2/ My Folate (which I was supposed to be taking but wasnt anyway as when I was I didnt notice any changes at all).... is now being changed to Folinic acid 800mg (he recommended "Source Naturals" Brand). I currently have Folate deficiency and also due to my polymorphism need this active type of folate..
3/ My D3 4000IU daily (which I'd given up on taking as I didnt have much luck fixing the D deficiency in the past).. is being changed to D3 25,000 IU (Thorne Brand) to get it up very fast from my very low levels.
4/ Ashwagandha Extract .. Life extention brand (is that for my adrenals?? .. I'll need to look it up.. I can see on the thing he sent me about it that it is supposed to help with mental energy and concentration).
I had a friend who I hadnt seen in 5mths take me out yesterday for 5hrs (it may of been a little less). We went driving and had lunch out.. also was taken over to a mutual friends house (I spent the time there laying on the floor some of it with eyes shut..exhausted by that point). The last hour out was extremely difficult for me but I grinned and beared it, just layed there listening to the convo as I knew my friend was having fun but finally had no choice but to tell him I had to be taken home (I was about to go into seizures at that point from overdoing it, I get a sensation just before that occurs).
So I went to bed as soon as I got home and spent the next 23 hrs in bed completely exhausted (I watched a DVD during that 23hrs for 45 mins but that just exhausted me again so I ended up just contentively laying there with my eyes shut).
The exhaustion is currently the thing which is flaring up the most when I crash. A few months back it was still the neuro and POTS symptoms which would flare when I was crashing (headache, shaking, collapsing.. like suddenly no legs etc and nausea) and be bothersome to the point they wouldnt allow me to do enough for the exhaustion to become an issue..but things have once again shifted so Im back to ME manifesting for me as it used to do with exhaustion now being the thing which is affecting me .. I dont know if that is a good thing or not over the neuro symptoms.
Anyway.. from the time I had to spend in bed, I had a big startling realisation today of just far Ive come with my acceptance of how things are for me with this illness. I realised I dont think of it at all as being abnormal when Im stuck in bed crashed and doing recovery. To me its a normal state of being after being ill for so long, its just life ..haha sounds funny to be using the term "life" when describing being stuck in bed! but I have no emotional feel about it at all (unless Im actually wanting to do something at the time.. then I do feel frustrated or irritated about it).
To my surprise, I realised that having to spend a day/night in bed (except to go to the loo or microwave food) dont make me at all sad... it didnt make me feel any anger at all either. I realised that Im very adjusted and content when Im too exhausted to want to do anything.. maintaining peace still at those times (as long as I dont have any painful symptoms, I wouldnt feel that if I had pain). No longer do I get upset or angry at "loosing a day of my life" like I used to do. To me it's just the norm, a part of life.
Im looking back and seeing just how far Ive come.. I have peace as I have acceptance.
Currently trying to deal with state gov (Sth Aust) discrimination issues against those who have ME/CFS after another knock back for the electricity rebate scheme for those who need their temp around them controlled. The state govs letter to and the latest knockback I got this week, after they got a so called "independant expert" to review their gov policy for those who have ME/CFS/POTS, I put on http://forums.phoenixrising.me/inde...t-me-cfs-and-pots-patients.20356/#post-310941 . (did the expert know anything at all about POTS and ME?)
I have to keep fighting this as Im maxing out my credit card due to my huge electricity bills on putting onto it in my attempts to keep the temp within my house within the very small range my body can handle.. To me it could possibly be a life and death thing as Ive gone unconscious on quite a few occassions due to heat and could end up with heat stroke or worst if Im unconscious in a sweltering hot house. On top of that.. Ive suffered chillblaines to the point where my toes were so swollen I couldnt wear shoes and also Raynauds (and then couldnt use my fingers properly) in the past too and when i crash i need an external heat source to keep warm.. if Im crashing, putting jumpers on dont warm me up at all if I get cold. (there is only a 4-5 degree range of temp Im comfortable and dont have any issues with as far as cold and heat goes).
My iherb order hasnt arrived, its taking longer then normal and hence i havent been able to start the things my new specialist wants me to start.
My condition may be slowly worsening again.. maybe due to the weather warming up??? Im getting more tired and suffering from more exhaustion. Im currently getting out of bed about 10.30am and consistantly falling asleep while trying to do things (non physical things) between 5-6pm... very very tired by then... by 7.30pm thou Im ok... but im usually out of action, not even being able to read or watch a DVD during that 1.5-2.5hrs (sometimes I push throu it but its a nightmare as Im hardly functional.. walking into walls when trying to go to loo, dropping my drinks so things end up smashed over the floor etc etc.. its like my brain is partly gone to sleep and just wont wake up properly).
So Ive started formulating a new plan of action to deal with this and avoid just as asleep as awake time and tried the other day going to bed half an hour before the time this usually occurs kicks in.. That worked, I found by doing that, I was able to avoid it happening and hence then was able to spend the time it usually occurs actually in bed doing things, rather then laying there like a zombie unable to do anything for hours.. what is horrible too is thou i get very very tired when it occurs and start falling asleep.. I will wake up constantly and keep fallling asleep and waking again. So its not even like I can use the time to catch up on sleep.
The other thing currently going on is that I may be getting what I think may be absent seizures again (I used to ge this symptom with the ME but hadnt had issues with these for a while). Ive had one possibly two of those episodes this week. I'll describe what happens... I'll be doing something but its like my brain faults and hence then I'll do something weird, while partly knowing what im doing but not really knowing what Im doing.
eg I picked up the veg scraps from the cupboard and was walking across the 3 metres to get to the scrap bin on the sink to put them in.. I took a couple of steps towards that but then I just dropped the scraps onto the floor (so they went everywhere). It wasnt that my hand forgot I was holding them or gave way..but my brain "purposely" just dropped them or something (its soo weird.. I had awareness which my brain told me to let go of the scraps). It was like Id gone into autopiliot but one in which my logic wasnt there.. I dropped them purposely all over the floor and only once I dropped them did my awareness come in on what I just did "why on hell did I do that?".
Could that be an absent seizure of some kind???
Then a couple of days ago.. something else happened which seems similiar but probably this one was just lack of concentration? as this one it wasnt that my brain did it (my concentration is worsening). I picked up my cream to put back in the fridge and was walking to the fridge. I got to the fridge and opened the door.. only then to notice a big pool of cream by my feet.. and a big trail of it leading back to next to where I'd picked it up from (it had been full but was empty by this point). I was holding the cream upside down without its lid on.
My poor concentration yesterday had me squeeze a lemon.. rather then squeezing it onto my fish, I squeezed it straight up into my eyes... and a lot of lemon juice went into my eyes. My support worker found me (she was trying to unload my groceries) with my head in my sink with the tap running full over my head with me trying to hold my eyes open to get the lemon out (that really hurt, it stung so much that I couldnt even speak to tell her what happneed). Fortunately after being washed out, other then very red eyes they were fine. Im having more issues with functioning again due to my brain and have no idea what to do to help this (hope its not the warmer weather doing this eg me warmer hence less blood going to my brain).
Tania, do you document these events for your doctor? Maybe you could just cut and paste these stories onto a page to email or print up for him? Because this is very useful information for a good diagnostician.
I think we get so used to our symptoms that we don't notice when they've gotten WAY out of normal range, even for ME. It's amazing to me that your caretaker isn't forcefully advocating for you with authorities. Any one of these events should alarm her. Forget about calling it ME - what's going on in your brain?????
Obviously I don't understand how it works in Australia. If it was easy, you would have done it. But aren't doctors there afraid of lawsuits - or negative media attention - if they ignore obvious, recurring, terrifying symptoms? In the US, it helps to put it in writing (always with the date!), make sure they receive it, and keep a copy. Your doctor(s) needs to know what your daily life is like, and there's never time at appointments to tell all these stories.
My things from iherb finally arrived so I now have the High potency Methyl B12, D3 25,000 IU, MegaFolinic and the Ashwagandha. Ive started the Methyl B12 right away along with the D3 (as I dont think the D3 is going to do much). I'll trial the Methyl B12 for a week before I start taking the MegaFolinic too. These are my newist specialists recommendations to me.
Im wanting to have one of those saliva cortisol tests where its taken several times a day to get a good baseline of the rhythm of my cortisol cycle and what it's doing before I start the Ashwagandha so I guess I'll have to go and see a Naturopath and arrange that test as my doctors only tend to do the 24 hr cortisol urine testing (which has it just in one lot or morning cortisol blood test.. which for me the morning cortisol test usually dont show an issue thou my 24hr urine cortisol is nearly always out of normal range..so somewhere its really screwed up).
My neighbour who has harrassed me in the past and who Ive written about here and her harrassment before.. she's died (apparently 6 weeks back but I only just found out throu parcel delivery guy. She must of died a month or two after some of my other neighbours stopped talking to her over her poor treatment of me. Guess that's sadly how karma gets a person. So I could get a new neighbour right next door to me anytime.
Still havent had time to do anything for the ME/CFS protest, still planning to sort..Im currently thou having to take one day at a time as Im trying to do too much.
The medical supply place where I brought my medical compression stockings.. my boyfriend has been dealing with them for me as the replacement stockings didnt come to me in 10 weeks like they said they would. (They said they'd get a new pair sent to me as one of my stockings, something was wrong with it and it got a hole in it for no reason just after the first week. its gone on to get 4-5 holes in it..while the other stocking is fine.
They've now said it's taking longer to get the new pair to me as there had been several complaints so the company is changing to making the stockings differently and will have a pair ready for me soon. (These are Sigvaris brand..so top quality ones I had issues with but as I said... one stocking was fine).
Had a ME/CFS specialist appointment with Dr Del Fante today in the city which did go very well.
- He happily wrote me out a new referal for my medical compression stockings for my insurance company (I'd lost the other one he did or I sent it and the insurance company lost it).
- He added more info to my electricity rebate form (ticked another box on the form) and was interested to hear that the SA ME/CFS society is going to help me take up the fight of getting the gov. policy about those who have ME/CFS and POTS not being allowed to have the gov heating and cooling rebate like other conditions which have temp issues, changed. (The SA ME/CFS society rang me back about the issues yesterday).
- He put my clonidine dose up to half a pill (up from a quarter). Still hoping it would do something for my POTS. Happy it does seem to be stopping my nor adrenaline BP spikes up.
- I did mention to him about getting what seem to maybe be something like absent seizures coming back again in the past week (told him about the things which happened which I mentioned in my last post) . After thou hearing I'd had neurological testing in the past which found nothing (other then an "non specific abnormal finding" on my EEGS*.. I forgot to tell him that) and seeing Im not having "many" possible seizure incidences, he's decided to do nothing about them at this point of time.
*The non specific abnormal finding on my EEGS is a common one for ME.
I also went back to the dentist this week as they'd told me to come back for a scale and clean after my dental appointment a couple of weeks ago (now costing me quite a bit seeing the governments chronic health dental plan got shut down). At least I wont now need to see dentist again for another 6mths (I need to go to dentist a lot due to sports drinks I used to take for POTS ruining my teeth enemal).
My next specialist appointment in the city will be on Monday (with my latest CFS specialist Dr Mitchell).
Hopefully having two CFS specialists on the go for me at once will work better for me.. ones working on treating symptoms eg POTS, while the other is doing an approach no other docors have done for me so far, working on treating causes eg adrenals, D deficiency etc etc..
Im sick of having this illness for so long with very very little success of helping it or my symptoms with already seeing a lot of CFS specialists (note.. none were or are ME specialists, I think that's been a big part of the issue) . So many symptoms after so many years, still not under control (feeling very frustrated about it). We really need to get on top of my medical conditions more while Im being ok enough to be seeing doctors again at this point of time.
"We really need to get on top of my medical conditions more while Im being ok enough to be seeing doctors again at this point of time."
YES!!! It's so wonderful that you're getting support and new ideas to try. I love hearing about your journey.
Had my second appointment with Dr David Mitchell today (the doctor who specialises in hormones and the MTHFR polymorphism I have) and got my latest actual tests results so I now can see levels (rather then just being told high or low over phone).
From my temp readings.. he's decided not to try to treat my thyriod which is in the normal lab range but he sometimes does treat those in normal range depending on levels there, my level was at a level where he wasnt sure if it may be giving me issues or not so hence the temp readings I was asked to do. I only then had two temp readings he considered low in the 5 days he got me to take them (so he said my thyriod may be slightly fluctulating a little off at times but often fine). So said its something we'll just keep an eye on.
He says from my tests that he can see Im starting to go into perimenopause. Last few months Ive actually had regular periods.. he's said its the shifting into perimenopause which is causing them to actually go regular as its helping what was causing them to be irregular and helping the polycystic ovulation syndrome (PCOS) I have.. (Ive forgotten now the hormonal explaination of it.. darn.. I thought my body must of been getting better when my periods have stayed good.. not that Im heading more towards menopause). He said both my progesterone and estrogen were low (I guess that was for the time of the month I was in?? he said my progesterone was 5? times lower then what it would of otherwise have been).
He talked about my DHEA being low and impacting on my testosterone and something about how my cortisol is using up and taking things which then arent flowing down the two paths of the steriod hormone path either side of the cortisol path.
He's hoping that by balancing and treating my cortisol..that it will help the other two hormonal paths on either side of it boost up as making things more available for them. The top of this hormonal flow chart is cholestrol.. which is boosted in me and too high (hypercholestrolemia) cause of my insulin issue (hyperinsulinemia). As as we also are trying to treat my insulin issue more too.. this should also help with balancing my hormones.
Thou my serum cortisol was in range (its my urine cortisol tests which usually come back abnormally low). He said that the level I have would be used up by lunch time leaving me low rest of day and struggling to cope with any stress at all, he also said this would affect my sleep. (Im completely confused as when I rang up to get my test results the lady at desk told me my cortisol was high... so I dont understand now why Im being told he considers it low). He's told me to take the Ashwagandha Extract for my adrenals AT NIGHT just before bed (which may also help sleep).
My 1-25 2(OH D) thou as per normal was good (mid normal range) but my 25 hydroxy vitamin D which I was so happy a couple of months ago as it had suddenly come good itself and for first time was "just" in normal range in the low 60s (test normal was 60-160).. well that has ditched again... and that D is now only 36. (sighs..ditched to half of what it was in a couple of months, a level which even then he'd thought was low).
Due to my D deficiency he's increased the D he put me on to four 25,000 IU D3 tablets per week which Im to stay on till at least after xmas.
My glucose on my 2hr glucose tollerance test with insulin wasnt good and neither was my insulin (my insulin was way way up). (my insulin may of been 10 times what it should of been.. I cant remember now what exactly he said but it was very bad). Im going to try his diet for a while but as its hardly different to what my other insulin specialist has had me on from the end of last year.. I doubt if its going to help. The specialist said if my next tests just after xmas with his diet are coming up the same.. he's going to have to put me on drugs for my glucose.
my homocysteine was half the amount of what it has been in the past (so this was very good... having a MTHFR polymorphism my homocysteine is usually higher then most.. with the level it came back this test.. one wouldnt even be aware I had the polymorphism)
My serum B12 was 1303 (normal range 140-700) Result of 2 B12 injections per week for quite a while. He says thou it is high on my test I wouldnt have been getting it properly and be low due to my polymorphism as Ive been injecting the wrong form of it for one with this polymorphism which leaves the hydroxl kind of injections not able to help me. (I need the methyl form).
He's sent one of my blood test out of state to the Prince of Wales Hospital for "Di Hydro Testosterone" Test. (i guess that is something about "good" and "bad" Testosterone testing he was telling me about. My previous appointment he told me he thought I had "bad" Testosterone and that my good testosterone was converting to this (hence all my facial hair growth while having low testosterone levels).
My Ferritin is now within normal range and good at 30 (15-250). It had previously been too low.
ESR which was nearly out of normal range in the past (on border on normal range) but had finally dropped a bit.. seems to now be staying in mid range.
My anion gap which has before came back as low. came back just in normal range now.
I was so surprised to see my white blood count which for past 7? years has been in the low 4s (and at times almost out of normal range, right on the border) which some ME specialists would say indicates chronic infection at these levels (normal lab test range is 4-11). Its actually gone up Its almost had a 50% increase an is now 5.8 . The increase came from my neutrophils going up. Ive no idea what has helped this.. maybe my low carb diet for my insulin issue has?? (Would that mean my body is more able to fight something?)
Serum Beta Crosslaps?? (what on earth is that! Im going ot have to look that one up).. that one is in normal range.
He made me cry this appointment due to his rudeness.. he cut me off completely after asking me what I was eatting for breakfast and started to give me a lecture on how I need to include something like bread into my breakfast, before I had a chance to tell him I had 3 cracker biscuits and cheese with my eggs. He rudely cut me off and started to lecture me (not nicely) about eatting wrong before he even knew what I'd really had. (Im so glad my boyfriend was with me to help calm me down after that.. I probably would of walked out of my appointment bawling if he hadnt been there) Why do the medically smarter doctors have poor patient manners?? while the nice doctors dont offer treatment and cant tell u what is going wrong
Anyway his current action plan is having me on the right things for my polymorphism, helping my adrenals (cortisol), fixing my D deficiency and trying to sort my insulin/glucose issues out, which in turn will all hopefully help some of the other stuff I have going on. (next lot of blood tests to check on all this will be just after xmas)
Sounds good tania. when he mentions cortisol using up your dhea and testosterone, i think he is referring to something called pregnenolone steal . hyperinsulinemia can be caused from high cortisol levels which can cause insulin resistance. Cholesterol can go high as its an indication that your body is trying to make more hormones like dhea and testosterone but because of pregnenolone steal, cholesterol/pregnenolone is being shuttled towards cortisol and away from dhea etc and could also affect aldosterone levels which could be one of the main issues with pots/oi. Im finding ashwaganda/withania helpful for night time cortisol, it might also be worth while trying phosphatidylserine(PS), be interested to see what your doc thinks of PS. Worth asking your doc about pregnenolone and progesterone creams as they can help boost other hormones down stream.Low carbs can help with high insulin levels as can other nutrients like chromium and lipoic acid.
Im excited for you, this guy sounds like he is going to be helpful for you. If u can get past is attitude, but thats the case with alot of docs unfortunately.
Glad someone knew about what I was attempting to say. I've added my doctors chart into my post now if you want to take a look. Basically the same as the one in your post but with some bits added in between.
Its good to hear that you are finding the ashwaganda helpful.. I really hope it helps me.
The specialist isnt interested in trialing anything else on me right now as he wants to see how much my system adjusts and changes to what he's doing now. (I have trialed progesterone cream in the past but it didnt help me any.. but he said part of the issue is that alone wouldnt have helped as I have too much going wrong).
Nods yeah.. low carbs are supposed to help with insulin... that is what my previous specialist trying to treat my insulin issue said.. Ive spent a whole year on an extremely low carb diet and my insulin is just worst then it was before. My new specialist says that one dont even need to eat carbs to trigger off insulin.. just thinking about food can activate insulin release. (so that finally explains why I can freak out completely if I get hungry and cant get food right away.. and can go very mood swingy if not quickly fed).
metformin is something worth looking into if low carb diet isnt helping insulin levels as it improves insulin sensitivity and the body needs less insulin to do its job. Sometimes it can reduce b12 levels but easily overcome with b12 injections. I think your doc is right about progesterone not helping as u have a few things going on and to notice improvement you need to attack all of them. I think this can be the problem of people trying many treatments as 1 treatment might not have an obvious noticeable effect but long term it plays an important part. Many treatments/systems overlap each other and i think adrenal dysfunction and insulin resistence overlap considerably and worth pursuing and something im currently doing, as well as all the other immune stuff etc. Me/cfs isnt a one trick pony as u know.
Here's another diagram I got from my specialist, this one is on the MTHFR polymorphism I have. ..which shows the interplay of the various things which are affected by this polymorphism.. along with showing why those with this need to be taking folinic acid instead of normal folate.
Ive been told as Ive had an issue with folate my whole life due to my DNA due to having the worst form of this polymorphism..that its going to take about 2 years for my body to adjust to getting its needs throu folinic acid (so I also in the mean time need to be taking methyl B12 as its been the B12 my body has been using instead to try to compensate to get its needs met all these years).
Wow! You guy sounds galaxies better than any doctor I've ever seen. Good for you!
I probably dont document events enough for my doctors but have over the years become very discouraged as they mostly ignore things or always ran wrong tests (eg sending me to heart clinic 3 times instead of to someone for my dysautonomia). I used to document but found doctors just wouldnt read.. so nowdays I just quickly mention any very bad incidences which have occured at my appointments
My new doctor isnt approachable as far as POTS stuff goes (wont listen to me at all there or research that).. he seems just so sure that if he fixes all the issues he sees with me (hormones and the MTHFR stuff) that Im going to be good. Im kind of fearful what he's going to be like when he finds out I still arent.. Im sure my issues are more then just those things and sure I do have ME. Ive seen enough of others experiences over the years to know thou treating the hormonal and other issues helps, it certainly is no cure for ME.
Doctors over here dont seem to be afraid much of lawsuits (they often ignore severe ME/CFS patients just like what happens in England too).. I think lawsuits are far more common in America then Australia. Besides a doctor could just turn around and say he couldnt have been expected to know about an illness they arent given any training to treat, so I dont think one would even manage to prove a charge of being negligant in treatment or even getting a doctor into trouble for going "there is nothing wrong with you"after you've been in tears telling him once again you had another collapse (and almost got hit by cars on the road) when heart tests and EEGs have been done in the past.
My home support person doesnt do any advocacy at all for me, her agency employs her to do home support and take me shopping as a support person etc (she doesnt deal with money or helping me deal with people other then do things like stop cars if I collapse in the middle of the road) . I'd love to have a worker to help me with advocacy and other stuff (its why Im so reliant on my boyfriend as there is no one else to do advocacy for me when I need it and to help sort others out).
She didnt want to take my bankcard and go shopping for me one time when I had no money to give her and couldnt go shopping myself (maybe the agency has some rule about their workers dealing with others finances??) She does thou help me with money counting if Im out and my brain gets to state where I cant count my money to give another at all which does happen to me (she doesnt step thou in unless I ask her at the time unfortunately..this has resulted in her having to take me to get more money out 3 times in the matter of 2 hrs as I keep making mistakes in trying to work out how much I need to take out to pay stuff). I know im not the ony person in this situation wishing the support workers were trained in how to be helping us more and comfortable in doing more.
What is way out of normal range for ME thou? 25% of ME patients have it quite bad. My symptoms with this illness have always been quite terrible (except while I was heading into remission) with some very bad symptom or another going on enough for me to need support services helping me in my care.
I had another near colapse only today.. I was laying on my toilet floor after having to crawl up my stairs from outside as I couldnt stand after I'd done too much outside (too warm for me too) and wondering how on earth I was going to get up and sit on the toilet without a POTS passout. I laying there almost peeing myself, trying to work out what to do.. try to sit up and get off floor to pee and probably pass out.. or just continue laying on the floor, dying to go.
Fortuately my mother and sister had come over to help me clean out caravan for a couple of hours.. a rare help as mum cant drive and my sister is busy with young kids..hence a rare 2 hr visit to help me (that's what made me so bad today.. sitting in caravan which is warm.. telling them what to do.. just mostly doing that for a couple of hours was too much for me.. weak as a kitten by the end of that and dizzy as hell)..so then I was able to yell out to my mother after being on the toilet floor for a few minutes. To come and help me and make sure I didnt faint there.
This is just the reality of ME.
ps Im soo glad I got help doing that today thou both my family members were struggling too.. my mum with her wrists bad RSI (she's on disability for them and actually is needing a support worker too) and my sister had bad FM today (and was showing up CFS symptoms) and so was in pain while trying to help me and weak too. We are all a mess.
Update.. Gov Agencies who dont listen
I emotionally blew up this morning as a housing trust worker unexpectively turned up.. not only that she also turned up before 12pm (Ive told them countless times not to contact me in any way before 12pm due to my insomina and reversed sleep cycle and have made them write it down on my file) and I often cant deal with people till my brain is fully awake.
When Ive got each day very carefully planned out re pacing.. unexpected people showing up can end up causing me to overdo and crash. I was extremely annoyed as my mum and sister were coming over for a couple of hours to help me a short time later (so was resting up , trying to make sure I'd be as well as can be before they arrive.. ..and here is this gov worker at my door wanting to come in discuss my housing trust applicaton move and hold an appointment with me. Then she layed a guilt trip onto me when I angrily answered the door saying "oh Im only trying to help you".
What annoyed me even more is we spoke to that agency (I now have my boyfriend dealign with them for me as they dont listen to me well) , last week and they said I woudlnt be hearing from them for a month... then this week I get mail from them saying I need to ring and make an appointment.. which was all what I'd been concerned about as my boyfriend leaves for overseas again today and will be gone for 3 weeks and I want him at the appointment as I tend to confuse things and can drain out fast during appointments.
So he after I rang him and told him about recieivng the letter which I should not even have been sent, rang them again yesterday.. in the morning.. telling them he was advocating for me and had to sort it out before he leaves for overseas, if they cant wait till he returns. So they say they will get the right person to ring back later that day.. which of cause doesnt happen. So my boyfriend rings them back right bfore closing time and the person then takes notes, saying he's rung for me and saying not to bother me till he returns and he gets told they will ring him and sort my stuff out throu him when he gets back.. Then today she shows up at my door!!! Saying no one gave her the message.
What part of "im too sick to be dealing with this stuff myself and have another advocating for me cant they understand?" or "Do not just turn up unannounced or before 12pm".. I have little tollerance for gov depts who continually are paying no attention to me or my health issues at all. And that lady has made me feel guilty for treating her rudely when she just rocked up this morning (she left as soon as I got angry and refused to invite her in). What is sad too is this lady in the past told me she had CFS herself (or used too.. something like that).. so one would think she'd be more understanding then to arrive unannounced on my doorstep.
This all makes me so crazy. I saw a doctor Tuesday about the Lyme and he spent half of the appointment very seriously explaining that what I need to do is see a therapist - I'll be really surprised at how much a little medication can help! - and that in fact I should see a therapist and forget about my CFS specialist in Florida.
That reminded me how badly it kicks us in the gut every single time this #?!!##*&??! stuff happens. I don't ever have to see him again.......he called it my "supposed" Lyme anyway (highly positive IgM test!)..... But it's depressing that in the land of Klimas, Enlander, Montoya et al, I got referred to a doctor who doesn't trust positive Lyme tests, and doesn't believe in CFS.
You know what was interesting? I felt worse the whole weekend before seeing this jerk - having seen him 2ce already. At the appointment I got more and more fuzzy-brained and tired. By the time I got home I was feeling better! Now I would never want to give psychobabble a leg to stand on, but this reminded me why I've cleared my life of friends and family who are stressful.
Your situation is so complicated and so full of jerks! From half way around the world, I sit here wishing there was something I could do. I'm glad you sent the lady packing. That's a loss of money for her bosses, probably the only thing they respond to.
I commented on one of your posts in another thread but then found this journal which answered some of my questions!
I am in Adelaide & was curious as to who your new CFS Specialist was - as I thought it was David Mitchell, I couldn't get an appointment until Feb!! So looking forward to seeing him; also wanted to let you know that Dr J Graham who was my previous dr and yours it would seem, had a stroke earlier this year and as far as I have been able to find out isn't doing any work or consulting any more, hence me having to find a new dr and making an appt with Mitchell!
You haven't mentioned what your MTHFR SNP is, 677 or 1298, and heterozygous or homozygous or compound hetero?? I'm guessing it might be a 677?? I look forward to an update to see how your new Rx program is progressing and how you are feeling! Good Luck,
Sorry to hear that doctor you saw for the lyme was bad and tried to get you to see a therapist **sighs** I feel so sorry for all of us. All the bad doctor experiences cause they dont understand the illness, ends up badly impacting on us. Im almost doctor phobic cause of what Ive been throu with them, so always nowdays expecting the worst when I have to see a new doctor and scared to go alone.
I hope you can find another doctor.
My new doctor was surprised when i first saw him that no doctor had put me on metformin as he thought they should of done seeing i have polycystic ovulation syndrome and the insulin issue. I think that is what he's most likely to do next when I go back to him after xmas and have my tests redone. (if it drops B12 maybe that is why he didnt decide to do that with me immediately.. he's trying to get my B12 currently good with active Bs due to the MTHFR polymorphism and the folate issue I have).
Here's my test results for comparsion (at the 1 hr mark) of how little a low carb diet has helped me with things now far worst. Ive been on a very low carb diet since 2010 (longer then I thought before, I started low carb diet right after this test). The first test by healthscope was in 2010 and the second my current MVS lab one. Sometimes it really is like Im fighting a loosing battle with my health. My insulin thou must go up even higher then that 140 result on that second test there as I didnt get mood swingy at all there like I often do when I have too many carbs. My fasting level my latest one started off in normal range and 9 lower due to my low carb diet (unlike in my first test or my result would of been higher). I dont want diabetes Ive already been told Ive had diabetes complication when I got my frozen shoulder.
Hi Lucy, sorry i missed seeing your other post to me.
A new patient tried to get in which Dr Mitchell when I was there the other day and was told there is currently a 6mth wait to get in. Best luck with your appointment.. if you are like me and sensitive to what another can say, I strongly suggest you take another in with you for support as his manner can be an issue.
Ohhh Im very sorry to hear about Dr Graham as I'd been wondering if I could go back to him as he's the only doctor I knew who was supporting hair analyses and had helped me as far as that (it was something like $30 cheaper getting it done at the lab if I went throu a doctor... I guess this now means I have to pay the not supported by doctor cost for one).. thanks for telling me that... I'll send him a card with my best wishes to him.
If you have any food issues at all going on or suspect food issues.. I suggest for you also to pay a visit to Dr Allen Gale whos an allergist and and who has helped quite a few people who'd been diagnosed with ME/CFS (will do lactose testing, insulin testing, skin allergy tests). Dr Allan Gale is very lovely and old school. He's at hindmash, phone (08) 8340 1566 and is much easier to get in to see then Dr Michell. Here's one of Dr Gales talks at a CFS conference http://www.agale.com.au/CFS.htm and something to be considered if you have any issues with foods or carbs. (I didnt notice I had problems from carbs till after I'd found out throu tests and thought I just had some issues with dairy and breads and a few other food intollerences... it still surprises me how I didnt realise myself till my issue was pointed out to me, that I was getting shocking reactions to carbs. That explained so many of my bad reactions).
You can also try a Google Site Search
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