Update: I finished my IV Glutathione and vitamin IV's 6 weeks ago and so far the improvements I have had have been holding. Before I went to the clinic for 6 weeks treatment I was mainly in bed all day, I couldn't stand up to cook for more than a brief time and I hadn't vacuumed the house at all for a year...small cleaning tasks left me exhausted and crashing and I wasn't even sure if I was well enough to travel to Brussels.
Since August I have had more energy, been up in the day more and able to cook again - I have even cooked for pure pleasure once or twice! I can clean a little and vacuum. I haven't tried any exercise or even much walking yet...still feel like I could crash easily back to were I was. But last week I went out for a couple of hours to the shops with my daughter in her car, I took my wheelchair but didn't really use it, I walked a little holding on to it, stood in shops, had lunch in a very noisy café and then went to a few more shops. I was tired at the end of it, but not too wiped out! went home and rested in bed for a couple of hours and then still ok to help cook dinner for everyone.
This improvement must have been related to both the IV's reducing inflammation, and I think to the intense rest I had for 6 weeks (away from my family with no day to day stress). I have only had 3 GG injections so far as the last one made me itch terribly (but delayed reaction....) so I have stopped them again, so not sure these can have been having any effect.
I feel the anti-inflammatory effects of the Glutathione must be beginning to wear off as my bottom pain is back and is worse than ever - hard to sit down at all! and my lymph nodes are sometimes swollen again (these went down for the first time in 7 years at the clinic). My pain levels are also creeping up a little again in my joints, especially fingers, hand and ankles.
I was finally officially dx with MCAS last month by a Professor Arshad in Southampton (privately). He has written to my GP with suggestions about drugs and says if I treat the underlying infections and immune dysfunction it will go away, but he has said again that I need to be very careful what I take to try and achieve this as I could then prolong the MCAS. he felt confident that I would eventually stop reacting to things, but it could be weeks, months or years. He did say I definitely shouldn't ever take Tetracycline antibiotics again (this was something I was unsure about before) So that makes treating the Cpn, Lyme and Bart a little harder if I ever get to the point of being able to take abx.
I'm going to give the GG a go again starting this week and luckily this time have an Epi pen to hand that my UK Gp prescribed for me. Professor Arshad said the itching might settle as my immune system accepts the drug or it might not so I am going to see - I feel renewed confidence in my treatment plan as this trip worked out so well so far. Then I go back next month for an apt and am going to have a Glutathione and 'athletes' (like Myers cocktail) IV while I am there, just to top me up a bit.
Keep going, warrior spirit.
