Josie eyes Hawaiian treatment in bid for better life

[taniaaust1]

We are not expecting miracles in going to see Dr J, but it is likely to improve things for my daughter to an extent, and it's more than is on offer here, barring treatments that have many risks attached.

Thanks very much for your well wishes.

Jayne

Im glad to hear that you arent expecting miracles Jayne. Thou I understand how necessarily it is to hope too.. I really hope you arent basing too much of your hope on hearing about that one she has helped (Im sure she has really helped far more then one). Thou those who have ME do probably have the same illness.. what helps one dont help all.. I think we are in different stages and to different degrees so that too may also make a difference (and of cause there is the different genetics too coming into play).. some just dont seem to respond. I really hope you dont end up feeling shattered if poor Josie is one of those. I hope you and Josie are also emotionally preparedt for the unfortunate event of if it didnt help at all like you think it will. ***fingers crossed it will work out for you both. When one is extremely sick.. even a 10% improvement can be a big thing for a person)**

I suggest to have a second plan of action thought of a bit just in case it dont help. (nothing worst then findin that something one so hoped would work hasnt at all and not having any idea where to head next.. a second plan of action (Plan B) to follow if first fails, Ive found helps keep one hopeful that something will work). A good thing about this illness is that it is hard to run out of things to try which "may" help

Im assuming you did this.. but Im wondering if you have considered all the closer to home ME/CFS specialists (sigh..nearly all of them are CFS ones, it sucks) before deciding to travel so far for Dr. Deckhoff-Jones? (I assume that a less distance travel would put less stress onto Josie and of cause there is also the matter of it being less expense). eg Dr Lewis and other ME/CFS doctors who some at Phoenix rising see and have found helpful. Im currently in the situation where it looks like I'll be having to fly interstate to see a ME specialists. (its looking like I need saline IVs probably daily so I will be needing to find one who can arrange that).

ALL the ones in SA are CFS specialists and thou can treat some things a bit eg POTS if it isnt severe, still arent all that "ME" aware (CFS specialists cant do much at all for me..other then precribe anti nausea drugs etc). Ive just found a hormonal whiz kind of Doc in SA who's found NINE different things wrong with me from my abnormal test results which the over 35 different doctors Ive seen have missed or were treating wrong..so fingers crossed treating those coexisting issues is going to help. (this latest doctor Im trying in SA, dont seem to believe in ME/CFS but thinks the illness is caused by a heap of things going wrong in the body which are different for each person, causing one to end up with this diagnoses. I dont care if he believes in the illness or not (I personally believe ME is a actual disease).. all I care about is fixing the things going wrong in my body and hopefully improving the ME and my current state.

Im currently under 3 different CFS specialists in SA (seen 6 so called ME/CFS specialists all up in SA)...cause each one of those 3 is helping or has helped a wee bit in a way the others havent (either by prescribing something the others wouldnt which helped a symptom or doing a test which showed an issue I had with my body).. I wouldnt currently recommend any of those speciaists thou to Josie..that is unless I get improvement with this new hormonal guy.

If Josie has any at all out of range test results...I really suggest to keep seeking out the reasons why or asking people even here what that could indicate.. most doctors ignore these results and they usually mean something. (I would think it would of been very hard for ANY doctor including Dr Deckhoff-Jones to be up with all the latest research in all the areas where things can go wrong and be impacting with the ME eg till this new doctor, no doctor could tell me why I had the common ME issue of having low or no iron storage happening thou I eat a ton of meat etc etc Each doctor even ME/CFS ones tend to specialise in their own areas.. with being okay for some things but bad or completely naive for other things).

Has Josie been checked for things like coexisting POTS and other OI issues? (if she has these issues like most with ME do, it can sometimes really help the ME issues by having those treated).

Anyway best luck.. and do be prepared for Dr Deckhoff-Jones being sicker then you thought. (yes I agree she seems to have her heart in the right place). Im looking forward to hearing how things go for Josie. Please let Josie knows she is in many of our thoughts, wishing her the best.