Well, I've had two of my appointments over the last couple of days, one with Osteopath and the other with the dermatologist. The osteopath was really nice and helpful which was good. He said there is only a small curve in my spine and that it appears to be a compensatory curve which could have numerous causes and may be related to the problems with my endocrine system. He said top of my spine seems to be very flat and that I have issues with the lymph nodes to the side of my spine - which is where all my pain comes from. He worked on my spine for a couple of minutes but said he didn't want to do any more as it could be dangerous. He then moved on to my head and did Cranial osteopathy. Apparently it is through this technique that you can observe how the pituitary glandis working through light touch to the temple area (I think). I think it is kind of similar to putting your fingers on your wrist to check your pulse. Obviously not as easy and you have to be trained. He said mine was like a dead battery and basically my endocrine system is flat and toxic. So that was that. He wants me to come back for two sessions next week to try and help a bit.
And on to my dermatologist appointment, which was this morning. I was looking forward to this one to see what she thought of my theory... Hmmm.... Didn't go exactly to plan. I had to wait over an hour to see her as she was running late. During this time I had a lot of pain and then I got a bad headache. I had a lot of brain fog so I was taking forever to get to my point and kept forgetting words. She didn't seem in anyway interested about my history of being ill over the last few years. I definitely think she falls on the negative school of thought when it comes to ME/CFS.
I was trying to tell her about first getting sick in India and how my rash started around two months after this and about my Lyme theory. She wouldn't let me finish a sentence. I found this frustrating and stressful and my brain fatigue didn't help matters as I felt I wasn't able to coherently get my point across. The stress of all of this made me feel very emotional and I was almost afraid to talk in case I started crying, something I did not want to do in fear of suggesting I have psychological issues. She said a Lyme test always comes back positive if a person has it and that (which is not what I have read) there is no such thing as co-infections such as Bartonella. From all my research, I told her I thought she was wrong. I have read all about co-infections in Lyme disease, an example being the International Lymes society website. Anyway, we agreed to disagree. In my experience the majority of specialists do not like suggestions being made to them.
So what had she to say about my back rash?? Well, I was wrong about acne. Apparently some acne can be very itchy and I have acne. But on a positive note I also have Pityrosporum folliculitis, which is what I thought I had (see "here's hoping" post for my thoughts on that if you haven't already). Therefore I will be holding on to my theory for now until I talk with someone who is very knowledgeable about Lyme disease.
I did find this whole experience very draining. I felt deflated and and very emotional afterwards. Apart from my own doctor and my family GP I always feel like I am fighting a loosing battle. This kind of situation when you are not feeling well and you have brain fog can be very emotionally stressful. I don't understand why people are doctors if they don't genuinely want to try to help or at least listen to someone who really needs their help. I know I'm probably allowing things to get out of perspective. I'm not my usual strong self after the last few weeks. I wish I could have a bit more support from the people around me with trying to solve all these medical issues that come with these "mystery illnesses". I feel emotional drained right now and very teary all day. It's difficult to stay positive and believe in yourself and deal with all the crazy things that are going on with your body, and all the things that you've lost.
I'm seeing the top tropical disease specialist in Ireland next week. One positive to come out of this is to have myself more prepared emotionally for that and not allow any potential negative energy to get to me. I'm certainly not going to go in there so positive and think he will definitely want to help me. I was going to go and see the Infectious disease specialist that dealt with me four years ago. However after sending in my referral letter and ringing up I got the feeling I was meeting with resistance from him and (I always found him difficult anyway), so I decided to go with this other guy, who seems to have a special interest in Lyme Disease. I think between the old tropical specialist trying to fob me off and the dermatologist, and also being called back for my second medical after getting denied the disability this week has all been a bit much emotionally. I'm feeling vulnerable. It's very easy to see how this illness can tip people over the edge.
I'll be better tomorrow. I will have to dust myself off and find my fighting spirit again.