Strange symptoms that start at 9 AM sharp and disappear every evening at 10 pm sharp.Is this Lyme ?

Jack,

I'm so very sorry to read that you've had such a rough path. I've had a lot of the symptoms you describe, including a radiating arm pain (sometimes extending from the jaw to the fingers), and certainly the anxiety and panic attacks, including a couple episodes of psychosis (basically paranoia that everyone was staring at me like something was wrong with me, even though I was still rational enough to understand that what I was feeling was not reality)...it's all very scary when it happens, and when there are no answers.

I can't diagnose you, but I can relate.

Your specific question is about the circadian nature of your symptoms--I *can* tell you that many of mine are time-sensitive, and I have read here that in some cases (particularly fatigue-related ones), that can be due to adrenal exhaustion and benefit from detoxing with things such as lemon water and burbur supplements, which my doctor prescribed to me.

My pattern is that I usually wake up feeling pretty crappy but with a fair amount of energy, and I almost always crash HARD around 11 am. Then, around 7 or 8 pm, I usually start to pick up energy. This doesn't work well with the whole office job thing.

I have had a few freakishly clockwork-y symptoms over the past several years:

1. Almost every day between 3:30 and 4:45 pm, my legs begin to feel hot; they turn bright red and then eventually get itchy, like a heat rash, and then are back to my normal super-pasty color by 5:00. Sometimes this doesn't happen for months at a time and then resumes as a daily thing. This began, out of the blue, in July of 2009. I was on a "break" from this pattern when I began antibiotics two months ago and literally the day after I started antibiotics, it began again. My doctor thinks that it is caused by babesia, and she explained that babesia is a parasitic life form not unlike malaria and that it does indeed have its own circadian rhythm.

2. Cluster headaches. Holy carp. I've only had one cluster, in November 2012, but it was a living nightmare. The pain ALWAYS came at either 7:00 p.m. or 3:30 p.m. I came to dread those times of day waiting for the pain to come on. Just like the leg issues, the cluster headaches would last 45-90 minutes and then wear off.

3. General observation (recently discussed in a thread someone started about moon cycles): in documenting all my symptoms daily on a calendar, there *appears* to be a general pattern in my case of feeling much better during full moon periods and having flare-ups of all my most limiting symptoms during new moons. You might also look for this type of relationship. I believe there's some evidence--I think others here could guide you to specifics--that some of the tickborne parasites have both circadian and lunar life cycles, just as many other animals do. The only difference is that they use our bodies as their playgrounds.

One of the reasons I am so defensive to people about my bizarre illnesses is because they do follow patterns like these, and that just seems so contrary to Western medicine's expectations of how infections work. Infections that start and stop at specific times of the day or month, and especially symptoms that present while lab reports show no anomalies, tend to make people think that the symptoms are imagined. They're not.

Now this is going to be a real tangent, and potentially controversial, but you used the word "desperate," and that concerns me. I was feeling absolutely desperate a few years ago: I was sick with inexplicable health issues, all the doctors said my tests were normal, I was seeing a psychiatrist (I still see her--she has helped me a lot! Just not with the physical illness.), and eventually I took to drinking. A lot. I think it was half motivated by self-medication/numbing the symptoms, and half motivated by a desire to pollute my body and speed up what seemed like my inevitable demise. Sorry--that's very blunt, but I really was desperate and suicidal. I actually used to read research on substance abuse and addiction for a living, and here I was willing myself to become an alcoholic. I've never so much as puffed on a cigarette...but through the music of my favorite artist, I learned about something called ayahuasca and spent 18 months researching it, and then I took the greatest leap of faith in my life and I took it. It obviously didn't treat what I now know is Lyme, but it, honest to God, saved my life. A few doses turned out to be 20 years of psychotherapy and my anxiety and depression improved 90%, and since then I have not only had genuine hope that things can improve, but I've learned to live, without too much self-pity, accepting that my life may well be full of pain and discomfort. It doesn't feel like a dire situation anymore. I am not recommending that you or anyone else take ayahuasca necessarily, but if you feel sincerely desperate, you might want to read about it.

I hope that you get some answers and start to feel better. Whatever the outcome, at least please believe that the abrupt starting and stopping of your symptoms is very real. We are part of nature, not separate from it, and all you have to do is look outside your window to see that all animals and plants become active and dormant in circadian patterns. It's no different for the little microscopic buggies that invade us.

Hi jack, I responded to your other post but now see that this one is much more detailed. i will *try* to keep this response simple, now that I know that reading is a challenge for you.

1) Many of your malaise/anxiety attacks followed vaccinations. There are many stories out there of people who didn't know they had lyme until getting a vaccine & having unexplainable reactions. For some, the vaccine triggers the lyme to "show itself"--probably because the immune system is lowered as it adjusts to the vaccine.

2) Coffee--YES, most of us have noted that our bodies can't handle coffee at all when we have lyme, or anything with caffeine like Green Tea. I can do a little decaf, others can have just one cup of coffee a day. But for most of us, COFFEE=BAD LYME SYMPTOMS.

3) Tilt table test--Often recommended by LLMDs to see what else might be going on in our bodies. Lymies often struggle with vertigo/dizziness/lightheadedness, so the tilt table test helps determine what is causing it. There are so many symptoms Lymies experience that look like something else--low blood pressure, heart arrhythmia, etc--but these are caused by the ROOT problem of Lyme.

4) Many forum members here use herbs instead of/in addition to antibiotics. Based on your sensitivities, their posts may be most helpful to you so you can feel like you're making some progress.

No one on here can diagnose you, but your symptoms sound like Lyme to me. Your doc is a lyme specialist and you got a positive lyme test result. Read the very first post on this forum called "New to Lyme? Start Here!" for lots more info. And keep posting your questions, everyone is here to help each other! I am praying for you and your healing! (((HUGS)))

*Americanlymie, GREAT post! Thanks for the openness and details.

Maui