Before I get ready for the medical appointment, I received an email from Dr TL. He had obtained information about Low Dose Naltrexone (LDN) from a compounding pharmacist, and forwarded the information to me. Funny thing is that this pharmacist ignored my email enquiry, but gave Dr TL extra information about the LDN as well as price and offer of other pain management compounding services.
It was nice to receive the email, though. My doctor kept his promise of finding info and price of LDN for me.
~ * ~
When my turn came, Dr TL called me with Japanese name complete with my maiden name. His cheeky smile was big. The receptionist jumped up from her chair with the confusion of the ghost patient suddenly appeared in her waiting room. As soon as she realised he was calling me, she gave me a big smile. I gave him the signal of “shhh” People would think I’m Japanese, you know. He was enjoying the effect. I warned him that nobody recognise me with the name he just called. He was still smiling with satisfaction, and said, “But you do.”
First, we talked about LDN.
The pharmacist suggested the dose of 4.5 mg based on the article “ Low-Dose Naltrexone Eases Pain and Fatigue of Fibromyalgia “. Dr TL had given me a prescription of 3 mg based on my request. He was preparing to print out a new prescription of 4.5 mg for me while he was talking. I interrupted him and explained. From articles and information I read, it is recommended to start LDN with lower dose of 3 mg for people with ME/CFS. ( lowdosenaltrexone.org, Naltrexone: An Immune Modulator, Fiikus: Low Dose Naltrexone ) I also explained that it is always recommended for people with ME/CFS to start any new medication with very low dose. It’s just because our body reacts mysterious way to medications. He gave me some example of opposite reactions people get from the same medication. He didn’t pursue to start with 4.5 mg. I know that 3 mg is really negligible amount. But I knew my body might have drama-queen-like reactions regardless of how small the medication dose is.
I also informed him that I had already posted the script to the online compounding pharmacy and was expecting to receive LDN the next day. Since the price is compatible, I would post the next script to the pharmacy he contacted. I guess it would be nicer to have my doctor and pharmacist correspond. Only difference would be his pharmacist dispenses 100 capsules at a time, and the online pharmacy does 50 capsules.
He asked if the price of LDN too expensive for me. He cares about me holistically. If I just look at the price, yes, it is expensive. But it is not expensive if I compare it with other non PBS medications. I heard about some cancer medication costing thousands of dollars a month. LDN is cheaper than some of vitamin/mineral supplements. If I weigh the possibility of the medication and the price, it would be the money well spent.
He asked how I feel about starting the treatment. I told him that I feel neutral. I was not excited. I was not worried, either. I could tell he was a little excited, but trying to hide it. We don’t want to place high expectation, and then get disappointed. The chances for ME/CFS patients to improve with LDN are 50/50. He still believes it is a good prediction. We are both carefully hoping that this will work for me.
I’m such a privileged patient. I’m aware that some people are finding it very hard to find a doctor who would prescribe Naltrexone for them. I don’t have to go through that kind of desperation. My doctor is open-minded. And he really wants me to get better. If there is a possible treatment and I want it, he checks the legitimacy and safety, and then gives me a chance to try. Since he already knows me well, his decision is quick as well.
Then, we went through the regular checkups. The Spirometer/PFM result was once again better in his office. He told me that a man with a tie has nothing to do with the temporary improvement. My theory behind is something like this… I feel we have the same energy wave length. Since they make harmony, I’m actually getting energy from it, instead of spending it. Whereas, when I’m with a person whose energy wave conflicts with mine, it will make me extra exhausted as it fights against my energy wave.
Well, I have rather reasonable theory as well. I’m exhausted and weak when I got up from my bed. Then, it takes very long time for my body to warm up to the point I have reasonable strength. When I do the Spirometer/PFM, my body is not warmed up, so the performance is not good. When I come of see him, my body maybe warmed up from getting ready, driving and a little bit of slow walking from the car park to the clinic. So, it performs better.
Then, there was a routine mental health check. He believes I’m coping well with my chronic condition, but made sure I was not hiding anger, bitterness, and/or resentments from him. Although I get depressed every now and then, I don’t carry those negative emotions. I’ve done with grieving, which was filled with lots of negative emotions. To me, those emotions are just waste of my energy and only ruin quality of life.
Sometime during the conversation, he suggested I should be a motivation speaker. I don’t feel I’m up to it. Public speaking is not my forte. Just in case you didn’t know, I’m very shy. And with my condition, my voice becomes too weak for anybody to hear soon after I start talking, and then, I will need to lie down in the middle of the speech… But it was nice to know that my doctor thinks I could motivate people… Does it mean I motivate him as well?
He had a suggestion. He wanted to expand my interests to increase quality in life. I expressed my opinion about how difficult it could be. I’m a kind of person who enjoys activities when I have a company to share the experience and opportunity. I can no longer have passion for an activity only. Since I don’t have friend to share the activity, I’m afraid I would not get into the interest he suggests… Learning something new would be also energy consuming unless someone sit with me and teach me slowly… I used to have the passion to music when I was a teenager. But these days, I don’t have energy and strength to improve skill and technique. My hands are clumsy, slow and weak. I can only sit in front of a piano when I have a good day, and only for up to 30 minutes. And I can only manage to play a slow, calm and easy piece of music if I’m lucky.
Now, I’m regretting that I didn’t ask what “interests” he had in his mind for me. Knowing him, I might want to give it a try anyway… I’ll never know, if I didn’t give it a try.
Since he was checking my mental health, I told him all the things I needed to say. I don’t like my life. I don’t have purpose in my life. I’m not achieving anything. I’m lonely. I want to have someone in my life. And the worst thing is that I cannot do anything to change my life. Before I got to this sick, I tried to change my life when I didn’t like it. This is not me. This is not life. I’m just existing, not living. Although I’m trying not to think about the limitations, in deep down, I’m desperate to get better. (You see…, I’m not the kind of person who would motivate or inspire people…)
He just listened. He knew I was not asking for pity or unrealistic advice. I just needed to say it to a real person, not typing out onto computer screen. Even I said these negative and whingy things, he still looks at me as a capable and strong person. And he understands that it is being human to have these feelings.
He concluded that I’m doing well with my mental health.
He had another interesting idea to try for my lung capacity… Singing is back to his agenda. He explained how singing can benefit my lung and other functions. I agreed with him. He now has a patient who is taking singing as a therapy. The patient improves his Spirometer/PFM performance after he sang. He is not a bad singer, either. Oy, Vey! Mr. Lung Function Problem Patient, I will blame you if I end up singing in front of Dr TL!
For the next week, I will sing everyday. (Just one short song.) Then he would like to see the improvements in my lungs. This time, it doesn’t look like he is going to forget.
Posted in Doctors, ME/CFS Tagged: Fibromyalgia, LDN