Up and Down and Down Again

The Cast of Stand By Me

Over the past couple of months I’ve had relief from my head pain. I’ve been making plans to get back to my life. I’ve been thinking ahead, not just considering how to get through the day.

Most of my Lyme symptoms have gotten significantly better. Some symptoms have completely vanished. My legs and joints don’t ache constantly and I can see that I’m making progress.

Except last week, when the head pain came back. I’ve been on antibiotics for five months now. The head pain was with me for several days last week. This morning I woke up to it.

Just like old times. My head has hurt all day and it is crazy to me that I just accept it, like an comfortable old sweatshirt pulled out of the bottom of my closet.  I’m thankful for the break I’ve had from the pain. I’m worried that it will be here tomorrow again, just like old times. I don’t want to be so comfortable with the pain. It shouldn’t be expected in my life, yet it is.

Pie eating contest in Stand By Me

I start a new antibiotic tomorrow. If I drink alcohol while taking it, it causes projectile vomiting. I don’t know why, but every time I think of it, I remember the movie Stand By Me and the pie eating contest. And the projectile vomiting. And I laugh. I may have to have a glass of wine just to see what it’s like. It would certainly entertain my kids. Well, maybe not.

Ah, the things I do for entertainment. I think I might watch the movie again. I guess it’s a classic now (am I really that old?).

Thanks for standing by me through this.  This is a long road we’re on, eh?

I’d love to hear from you all. I’d love to hear that someone out there is getting better, but if not, a simple check in would be great.


Comments

Up and Down and Down Again — 3 Comments

  1. Hi there….Sorry to hear about your ups and downs. I do though want to thank you for your blog. I have been learned much and been very encouraged. I have had NDPH now for 1 1/2 years. Upon hearing your Lyme diagnosis, I had a test done through my local clinic. It came back negative. I wasn’t ever really content with that result as I’ve had other bizzarre things through the year happen such as constant heart palpitations for months, chest pain, eye twitches, facial pain, and the list goes on. And my head feels so much like inflammation (top of head mainly and can feel things moving!) So, I had a test done through my ND and Igenex labs and 1 band (31) came back positive. I was so over joyed and believed that this was my answer to prayer. I have sought out a LLMD who follows Dr. Joseph Jemsek’s protocols. It is a pulsed antibiotic schedule using Clindamycin, Doxycyclin, Clarithromycin, Artemesinin, Metrondidazole, and Diflucan. However, I’m freaked out by the Herx effect and worry that my headache could get worse. Ugg! What was your experience? It’s almost like I don’t want to take the risk of getting worse to get better.

    Anyhow, prayers out to you and everyone else. We just need to keep on having faith and trusting that God has the plan.

    🙂 Michelle

  2. Hi Amy,
    I am glad to hear you are slowly getting better and finally able to make plans for the future rather than just coping day to day. I have not been tested for Lyme but it is pretty much unheard of in Australia so it is highly unlikely that I could be positive.

    It is disheartening when your headache flares up again after so many good days. I certainly know what that is like as mine is also misbehaving at the moment. I was on Dr Rozen’s doxy/singulair combo for @ 6 months and stopped it in April this year. At the time I didn’t think that it had a dramatic effect on my headache but it did make me feel alot better health wise i.e less fatigue. Now that I have been off it two months my headache has become very unsettled with many more days of higher pain levels. I now think that the anti-inflammatory effects of the doxycycline and singulair had a beneficial effect on my headache keeping my pain levels much more stable @ 2 or 3/10 most days. Needless to say, I have started both medications again today in the hope that they will help again.

    Wendy

  3. Hey Amy, I’m sorry to hear your headache has returned. I really hope it will only be temporary this time! I had a couple of things I really wanted to tell you and your followers about. First of all, I have had mild asthma since childhood, and I started taking singulair to prevent attacks a long time ago, maybe ten years? Anyway, about a year ago, I started to get a lot of pain in my hands and forearms which rapidly turned into a pretty serious carpal tunnel syndrome. I could barely use my hands or bend my wrists because of the pain, and I wore wrist braces to bed every night, sometimes during the day as well. My hands were also numb or asleep and tingly frequently, especially when talking on the phone or driving. I was also getting very achy joints, one place at a time and it constantly jumped around.. A hip to an ankle to a knee and so on. My grandmother has pretty bad arthritis so I assumed it was something hereditary or possibly it came from all my texting and typing. Around this time, I ran out of singulair and didn’t have money to refill it. After a few days, my pain started to improve. After a week, I was drastically better and after two weeks, I was completely healed. I spoke with my primary dr. and he said he had never heard of such a thing happening as a side effect of singulair and couldn’t find anything in his research resources either. I know that a lot of us have done the doxy/singulair combo and I know that there are a lot of aches and pains with Lyme, but I wanted to suggest that everyone consider that the joint pains could be a side effect of the singulair and to consider stopping it.. Even if only briefly, to see if those symptoms go away. It was only two weeks before t seemed to be totally out of my system and that was after many many years and rozen’s Rx is usually short term so maybe relief could come even sooner. The other thing I wanted to recommend is a really good documentary movie about Lyme. It’s called “under our skin” and it follows the lives of several people who have the disease and it talks a lot about some serious issues in the medical world surrounding it.. Like how biased studies have been and how doctors frequently refuse to diagnose or treat Lyme. it’s pretty scary, fascinating, informative, andmakes you realize how important it is to be an informed patient and to stay involved in your treatment. I think this movie has been on tv recently and I got it thru Netflix. If you haven’t already seen it, please please check it out. It’s something everyone should know, whether you have gotten a Lyme diagnosis or if you believe you might have it. I really learned a lot from it. Good luck to you, I hope you get some relief very soon!

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