What types of cycles can Lyme disease re-occur on?

For over the last year I have been having serious health problems (undiagnosed after many tests) that appear and disappear on a reoccurring schedule. I had Lyme disease re-brought to my attention today and am wondering if anyone is familiar with it following a three month schedule (I've heard of one month...)

Every three months I start an episode of that lasts about a month, and then goes away for about two months. I have just started my fifth episode. Episodes include pain/stiffness all over body (ALL over), and is worsened by exercise (exercise may include routine activities like washing a few dishes or standing for 10 minutes). Exercise can leave me feeling broken and bruised, and sometimes like there is glass being pushed into my bones. The pain is all over and if I focus on specific body parts, it doesn't seem high (pain level), but all together it adds up to awfulness that often brings me to sobbing. I get really stiff and moving my body parts can feel exhausting. I sometimes get overwhelming feelings of irritation or impatience, but through mindfulness I can usually identify that the cause is pain, and if I'm able to lay down immediately, those feelings pass. During episodes I'm EXTRA tired. Sleep becomes more problematic due to pain. I'm extremely limited, and going to work (where most of my energy goes during episodes) is all I can do for the day. I notice when my pain is worse, my respiratory system feels off, like I might be getting a cold or something, but it will recede when I feel better and I don't typically get the cold. I find that I seem to have short term memory glitches that may be increasing. In recent episodes my extremeties seem to get numb/tingly/fall asleep much more quickly and intensely than in the past. I experience restless leg. Various body parts throb.

Outside of episodes (two month "breaks") I never feel great, but can be active (hike for several hours, bike for hours, etc.) but not to the extent that I used to be able to do. I still seem less capable of general every day activity then many people my age (housework, making meals, going places), and this was not the case a couple years ago. I haven't had a night of rest producing sleep in about a year and a half.

Even before my first episode, I can track back minor symptoms that follow the 3 month rule (primarily intense, unexplained stiffness without other symptoms).

I've removed a number of ticks over the past couple years. I live in the Pacific Northwest, where Lyme disease isn't particularly common. I traveled to Nicaragua and Costa Rica about a year and a bit before the significant symptoms appear. Don't recall removing any ticks there.

I hate ticks.

Is anyone familiar with Lyme disease following such a pattern? One month on, two months off, almost like clockwork (until the most recent, the last episode lasted a few weeks extra due to stress and the most recent episode started a few weeks late). I'm at a loss, as my symptoms could also be fibromyalgia, etc. I've tried to learn more about Lyme disease testing, but am still confused about what is most reliable, and hitting up all the panels seems outside my financial reach.

Sorry this is so long. I feel lost.

My pattern was like this for about 3 years and then i started feeling bad all the time. I was still working and taking care of all my own responsibilities. I'd get sick and go to the doctor and 3 weeks later I'd feel better so I'd never follow up. Literally for years!

It came to a head about 2 years ago. I progressively got so sick and now I can't lead a normal life.

Get to an llmd. Get tested through igenex. Just get to a good doctor before it gets out of control.

40 years of dealing with those odd patterns here- and as Astroman has said, basically unpredictable in the long term. I had some patterns show up, but they would eventually change.

With that said, your symptoms are consistent with having Lyme, so you really need to be evaluated by a doctor that knows what they are doing. Do you have a Lyme Literate Medical doctor that you wish to see yet? If not, we can likely help you find one.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD/LLND in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​You can send me an email by clicking on my screen name or the small blue envelop under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get.​


You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74


​ You can also now email TBDA (Tick Borne Disease Alliance) at [email protected]​
​ and ask for LLMD referrals also.
​

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your Lyme journey.www.ilads.org/lyme/ILADS_Guidelines.pdf

That's what the 'officials' say here in Arkansas as well, which I find incredibly interesting, since doctors don't even recognize a bulls eye rash and refuse to diagnose Lyme. No wonder there aren't any cases being reported!!

Lyme in in a pandemic state - meaning it's at alarming numbers all over the world. I've been both shocked and amazed watching this forum for the last 7 & 1/2 yrs at how far and wide this has spread and is continuing to accelerate.

Quite simply, there is no place that is safe from these infections - too many different types of insects now carry these infections. Who hasn't been bit by a mosquito? Or bed bug? Or horse fly or deer fly?

I have had cycles vary in length. Longest up to 3 to almost 4 months and as short as 4 weeks. This last time was the longest stretch I had in a while which was just about 4 months but when it flared again it knocked me on my @$$.

Hi dislikes_ticks,

After reading about your experiences, I feel inclined to share my experiences with Lyme.

I hope to offer you validation (not that anyone wants to be reassured they may have Lyme), but also an understanding that Lyme is different for everyone.

If there is one thing I've learned about Lyme, it's that no two cases are identical- it hits everyone a little bit differently (this could be due to so many different factors- where you were bit, geographically; if there are coinfections present; your overall health and lifestyle before and after infection; etc.).

I know what it is like to be searching for someone, anyone, who has the exact same symptoms or patterns as yourself. We desperately search for that because it is so validating! I did the same thing, and sometimes still do! Lyme leaves you feeling so alone, because we all know that doctors don't understand, and neither does the general public (often times including our own friends and family). So we are left feeling alone, crazy, and in need of validation.

That being said, you will likely find someone, somewhere who had happened to have had a similar cyclical pattern, and I, myself was having a similar cyclical pattern before I started progressively going downhill. I'll share more on this, but first I would highly encourage you to listen to your own body. You know something is not right or you would not be here. If you are suspicious of Lyme, I encourage you not to stop until you have a diagnosis. It sounds like you're working with a great naturopath who is willing to talk about Lyme- that's so encouraging. It was my naturopath who ended up diagnosing me, and now I'm seeing an LLND for treatment. I'd still encourage you to find a Lyme Literate Medical or Naturopathic Doctor in your area.

I have had Lyme for 16 years now (I'm 27) and was just diagnosed this last summer. For those 16 years, it was cyclical. But the cycles were constantly changing, and that made it so hard to follow and track, and piece together. If you mapped out the 16 years, I'm sure you'd find more cycles, but they're not always easy to track. And some are so easy, they're easy to get stuck on, and you think "this is exactly what's happening every (2-3 months) and unless anyone else is experiencing this as well, it must not be what they have!" But I always knew something wasn't right and wondered if everything I was experiencing was all related, but doctors thought I was crazy. In the last two years, I started having different cycles- they were more severe and more often- starting at only every 4-6 months, then 2-3, then one day when the next one hit it never really went away, and this is what caused me to push even harder to find a diagnosis.

Lyme is ever-changing, ever-morphing to evade detection by your immune system or treatment. Tracking your symptoms and seeing if there are cycles is very helpful- and it will be helpful for your Lyme Literate Doctor. Just try not to get so caught up in it that you don't listen to what your body is saying overall.

I live in, and was infected in the Pacific Northwest as well. Lyme is here.

Best of luck to you in your search for answers. We're here to talk if you need. Keep us posted!