I've looked in to the forum a couple of times, but have been too busy to read everything thoroughly or to post a reply. Thanks so much for checking on me though Corrij - your attentiveness to everybody is a great support, and I have really appreciated your knowledge and willing assistance. It really is amazing
Things became very complicated for me. I'm feeling well most of the time, except for problems with arrhythmias that can be very disabling at times. The main problem for me is that I'm allergic to some of the supplements, and it's taken time to work out how I can manage the protocol with the allergies. When I first started on the protocol, I would feel really well for a while, and then I would start to feel unwell again. Then I'd start another part of the protocol and the same thing would happen. I'm now back on the full protocol except for the MSM.
I had gotten so ill that I could eat very few foods, which is a big problem for basic nutrition. And worse, I had significant arrhythmias every time I ate something that I was allergic/intolerant to - there were so many of them! I've lived with allergies and chemical sensitivities for as long as I can remember - it's also why I was having problems with my blood pressure medication last year. I deteriorated significantly when I was on it, until I worked out what was causing the problems. However, once I stopped taking it I felt so much better, but it left me with far worse food intolerance and chemical sensitivities than I'd had before.
I'm now working with a new treatment that is a little 'fringe' or 'experimental', although there is some science behind it based on acupressure and acupuncture. It's been my only hope apart from strict avoidance, which is my usual strategy, and avoidance doesn't help if I need medications - it was no longer a solution anyway, because of the number of things I had to avoid. My allergy specialist is a harsh critic of the treatment, because it's not mainstream - as he has to be. However, I have more episodes of anaphylaxis during his treatments than when I manage it alone, and he cannot treat me for most of the food intolerance and chemical sensitivities. So I stopped having the desensitation injections in 1997. I've been undergoing the new treatment for a couple of months now - and was very, VERY sceptical when I started - but I'm amazed at the improvement. I can now have basic things like toast and milk coffee (decaf, of course!) for breakfast if I want to, or oatmeal - things than most other people take for granted. I have a long way to go, as each treatment is specific to the allergen. But it also means that I'll be able to take heart medication again soon, as they can treat me for my allergy to beta blockers. I'm trained in the sciences, so it's been quite confronting to my sensibilities on a number of levels, but it works - all my symptoms are reducing and some have disappeared.
A related problem has been that I can't have an ICD because the leads into the ventricle have a coating made from a petrochemically based substance. This needs to be sorted out some way, and I'm hoping the allergy treatments will allow an ICD at some time. The hospital is pressuring me to have one, because it looks bad for their statistics if I keep postponing - not a very supportive approach! So...it's all very complicated!!
I realise this all sounds pretty strange and difficult, and for a while I was quite worried. However, I've now subscribed to private health insurance and will start working with a new cardiologist in a few weeks. I need someone who is willing to help manage my cardiomyopathy with the allergies, rather than pressure me to have treatment (ICD) that may end up damaging my heart or killing me anyway! I'm also going to start treatment for my sleep apnoea, as this seems to be making things worse too (although I'm not nearly as bad with it as my daughter is).
Oh dear - when I read this back, I sound like a sad sick old lady (well, not so old!). In fact, I'm feeling better and better and taking more control of my health...but it's a long and winding path! And that's why I've been a bit quiet on the forum - I wanted to see how things were going - and it's still a bit early at this stage. Rest assured that I am still taking my CoQ10 and amino acids, as well as the vitamins - I've been treated for the amino acids allergy, and have to be careful about the purity of the vitamins I take. Apart from that, it's all systems go
And I keep reading more and more of the research...
PS - Karla was interested for a while, but is not so sure now. She seems to be happy managing with the CPAP and ICD, and is actually quite well. I suspect, however, that her allergies will worsen later, as mine did - but hopefully not! If she sees me getting better, she's more likely to take notice - but that hasn't been the case lately and she's been very worried about me. I'll keep you posted about her though, in case she changes her mind.
Warm regards to you Corrij - I hope you and your family are keeping well and happy!
Stay happy - warm regards.