In mid-May, I noticed a numbness in hands, feet, and face, and weakness in my hands. Two weeks later, I discovered a red ring on the underside of my arm, near the armpit. I went to a doctor who thought it could be Lyme disease and gave me a five day antibiotics treatment (this was in the US). The numbness went away after one day.
Two weeks later, in Norway, the symptoms returned and were much stronger. The numbness was back in my hands, feet, and face, and now also tongue and mouth (and a bit later lower arms), along with stiff neck, very strong brain fog and grogginess, and fatigue. (The initial extremely strong fatigue and brain fog could be related to jet lag, and I also have a baseline fatigue and brain fog from the CFS. Although the unusually strong grogginess remains now even after the jetlag is gone.) I also have weak grip (things slip out of my hands), and when I get up after resting I move and feel like an old man.
I had gathered that Lyme is a controversial topic in Norway. The official position seems to be that the infection itself doesn’t last very long. (If the symptoms are longer lasting, it’s something else.) Doctors who treat this “non-existing” disease in Norway risk loosing their license, and one did even last year.
When I called my regular doctor, I got an appointment the same day by the receptionist. She called back within an hour and said that when the doctor had heard why I wanted to see him, he cancelled the appointment and said I could possibly get an appointment two months later. A bright spot: Some days later, I was able to get an appointment. My doctor looked at the red ring, did some neurological tests, and agreed that Lyme is a probable diagnosis. He gave me a relatively mild two-week antibiotics treatment.
From what I understand, it’s important to treat it more thoroughly, especially early in the process, to prevent problems later on. I got the names of some doctors who may be more knowledgeable about Lyme, and contacted several of them. The pattern was the same with all of them: When they heard why I wanted to see them, they either didn’t respond or said they possibly had an appointment about two months in the future (and to call them then to set it up).
The last one I talked with was initially friendly and welcoming, and when heard why I called responded “that’s a controversial topic in Norway, I need to go now and will call you back later, goodbye”. And then didn’t respond to my later attempts at contacting him.
The essence is that it seems impossible to get quality treatment for Lyme disease in Norway. That’s why most Norwegians with Lyme disease go to Germany or Poland to see doctors there.
Several things come up for me around this:
I had expected Norwegian doctors to at least have the integrity to tell me they can’t treat me since they may loose their license if they do. Instead, they either cancel my appointment, don’t respond, or tell me to call back in two months. (Which seems irresponsible considering my symptoms,)
Since there is disagreement about Lyme internationally, I would expect the Norwegian doctors and government to take a precautionary approach. To treat any possible or likely Lyme disease thoroughly (initial four or six week antibiotics treatment + anti-cyst medication). Instead, they chose to not treat it, avoid patients who may have it, or they treat it in a minimalistic way that may make it worse in the long run.
I don’t know the politics around this, but the official policy on Lyme in Norway does seem to be influenced by politics, and perhaps arrogance and wounded egos.
I should mention that I am among the more cautious when it comes to using medication and antibiotics (also to reduce the risk of creating more antibiotic resistant strains), but in this case, the risks of leaving it untreated or wrongly treated seem serious enough so I chose to go the medical and precautionary route.
This also triggers the victim identity in me, since it comes on top of my existing struggles with CFS, and it happened just as I left the US (where I could have received proper treatment) for Norway (where I can’t).
Update: It seems there are three possibilities when people are infected by Lyme. (a) It lasts for a relatively short period of time, and then is gone, perhaps due to antibiotics treatment. (b) It can become longer lasting, due to continued infection. (c) There may be an auto-immune response which creates problems. I am sure there are other possibilities too. I haven’t read much about it yet.
Update 2, mid-July 2015: I went to Poland to see a Lyme specialist there. It turns out that he also specializes in CFS. It’s possible that there is a weakness in my system that makes me more susceptible to both CFS and Lyme. He took a good number of tests to get an idea of what’s going on, and what the best course of treatment may be. One of the main questions is why my mitochondria seem compromised, and unable to produce as much energy as they normally would. I feel a little better, partly from what he gave me, and partly from feeling I am in good hands and that someone actually takes my case seriously and may be able to do something about it.
Update 3, July 16, 2015: I had an appointment with my regular doctor in Norway (about referal to nevrologist for CFS), and he interrupted me and changed the topic as soon as I tried to give him an update about the Lyme. I still have numbness in arms, legs, and face, a stiff neck, strong headache, very strong grogginess, memory problems, diarrhea, and more, so it seems irresponsible by him to dismiss it – to the point of not even wanting to hear about it. (The symptoms are stronger some days than other, and obviously quite debilitating.)