latest update:
Just back from my trip to Brussels to see KDM and still taking stock and trying to make decisions, also trying to recover – the trip was quite brutal and I spent most of my time in bed, which was sort of OK as the apartment was nice. The only issue for me is i have to take my own bedding because of MCS and perfume smells so arrived exhausted only to have to change the bedding, air the room and set up my air filter, before I could get into bed.
The biggest decisions are financial right now as we also took my daughter who has been ill on and off for some years. I imagined he would order pared down testing for her (don’t know why I thought this), but he ordered 3,000 euros worth and neither she nor I had the money. We got it down to 2,000 and my testing was 700 (when I got the bill though it says 880 – yikes!) plus I paid for all the accommodation, food and appointments and fuel. My treatment fund is now empty and I have to beg borrow or steal the money to pay my daughters testing fees.
We spent a long time in the clinic waiting for appointments bloods etc and it was really hot in there, thankfully I took my wheelchair to sit in, which is more comfortable than a normal chair. Kdm was in fine spirits and I felt very kind energy from him, I think he can see how ill I am and felt truly empathic to me. We discussed how much worse my health has become since I first saw him last May and how reactive I have become with mast cell activation issues etc. He said that this is what happens when you are ill for so long – the immune system is disarrayed and everything starts to go wrong. He also said my daughter has immune dysfunction but not as progressed as mine – he called what we have an Acquired Immune Dysfunction Syndrome, but said that that name was already taken.
I asked him if my daughter could have picked up something from me in the womb or a genetic susceptibility and he said sure, but I shouldn’t feel bad about it, he said society has a lot to answer for, for all these people as sick as you – nearly had a tear at this moment. The upshot for me is that he needs to do treatments to get my immune system working a bit better and get me strong enough to tolerate antibiotics to kill the infections. He felt this would be almost impossible with me in the UK, and I suggested I might be able to go to Brussels for a few months over the summer.
His suggestions were that I come for three months and start with daily IV Glutathione. He also wanted me on 5HTP as I said I can feel kind of OK if I do absolutely nothing but stay in bed, but as soon as I start doing anything again I crash. He thought the HPA axis was all out and could be brought back on line slowly with 5HTP at first, although he doesn’t want to fire it up too quickly. I told him my concerns over taking 5HTP as I have had problems with SSRI’s and we talked about that and finally gave me an explanation for why I had such severe akasthesia from them in the past. He said this would not happen with 5HTP – he said he saw extreme reactions to SSRI’s as I had reported in his patients with very LOW Serotonin, 5HTP would help to slowly make more and also make melatonin which could help with my constant awakening and early waking issues.
He also said he couldn’t make a plan there and then as my case was complex he needed to look over my notes and get some more tests and then decide – perhaps LDN, perhaps Quercetin for the mast cells – he wasn’t sure. His plan is 3 months in Bx now, then 6 months at home, then back to Bx for three more months (i presume for iv abx). His concern is that I am not well enough to try killing anything for now – although he said my reaction to Rifampicin with feeling psychotic and suicidal was common and normal with Bart die off.
So it looks like I am going to stay in BX and I have a lot to organise – am having trouble finding a place that is suitable for me because of the crazy stairs they have everywhere, the lack of accommodation in Northern Brussels, and the cost is so high. Later in the summer my kids will also come out so we need a two bed place. There are literally only a few places like this in Brussels for rent, the rest are either unsuitable or ruinously expensive. As it is I am going to have tor raise about 10,000 pounds for each trip I think (most of that will go on housing and taxis). I will probably have to get a bank loan and pray that we can afford to pay it off. But I cant go on like this with no treatment as I can only expect to get worse over the next few years and im sure I wont live to be that old if this continues.
I forgot to add that he is testing me for molds and we talked about the moldy house I used to live in years ago - he gave me amphoceterin B (andtifungal antibiotic) for nasal irrigation twice daily for 25 days to take home with me. They started it straight away in the clinic so they could check I tolerated it ok and it was fine - although my technique is rubbish and rather than coming out the other nostril it tends to just fall out the one I put it in. Sometimes it trickles down my throat and sometimes it works just right.
