I'm not sure when/where I got infected, but now that I realize what's going on, I see that I've had symptoms for years.
I grew up in the Midwest (Iowa and MO) and lived there until 1997. I've camped in Michigan every year for the past 22, and I was a Girl Scout camp counselor in southern IL in 1990. I also did a lot of camping in the summers of roughly 1977-1980 in the Rockies.
I give the info/dates in case anyone's familiar with what ticks might've been where and when.
The earliest symptom I can think back to was overwhelming fatigue -- the kind we're all familiar with -- when I was a camp counselor in southern IL in 1990. It only lasted for a day or so, but I'd never experienced anything that extreme before. Same thing happened the following year as a camp counselor in Iowa.
That's the only potential symptom that stands out from that time period -- is that a possible symptom of acute infection?
I did have a tick out here in southern CA probably 15 years ago, although I didn't have any acute symptoms at that time, and I think I may have already had Lyme by then.
By that time I had already started with drenching night sweats periodically -- they'd happen frequently for a while, then stop for maybe 6 months or so, then hit again. I was in my early 30s at the time and didn't have any hormone issues that I was aware of.
I guess my main question at the moment is whether the fatigue as a counselor back in 1990 might've been a symptom of initial infection. Idk if this even matters really -- maybe I'm spending brain power on something that's irrelevant at this point?
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(breaking up the post for easier reading for many here)
[ 06-04-2016, 03:26 AM: Message edited by: Robin123 ]
Posted by TF (Member # 14183) on :
I don't think I would count overwhelming fatigue that only lasted 1-2 days.
But, periodic drenching night sweats I would count.
For the first 5 years I had lyme, my symptoms were episodic. So, I would have extreme muscle weakness for about 7 months, then be perfectly normal for about 5 months, then wake up one day with the extreme muscle weakness again.
I have talked to people with fibro that say that for the first few years, their fibro was episodic. Eventually, it becomes continual. That is the way it was with me also.
So, I would count episodes of symptoms as significant.
If you were bitten when you were a counselor back in 1990, perhaps that is why you had the short episode of overwhelming fatigue. Then, your immune system fought off the germs and you were fine again. Then, the next year the same thing.
Eventually, when the germ count gets too high for the immune system to control, then the symptoms blossom. (Each bite adds to the germ count.)
So, that is my analysis. The more you learn about lyme and coinfections, the more you can look at your past and see indicators of disease.
We all wonder when we got this illness (if we didn't get a rash and see a tick.) So, what your mind is doing is typical for a lyme patient.
I think it is a relevant thing to think about. Lyme docs often ask "how long have you been sick?" or "when did your symptoms begin?" and other questions that relate to the past history of symptoms, so think on!
Posted by SLH516 (Member # 48060) on :
The fatigue thing is interesting. About a year and a half ago I had it for several months, and it was just debilitating.
Recently it's been an intermittent thing, usually several days at a time, but even lasting just a few hours on occasion. One minute I'm fine, and the next I'm devastatingly fatigued and my body just stops moving...same exact feeling as the longer-lasting version.
That's why I was wondering if the early fatigue experience was a reaction to infection, since it's not unheard of for me to have short-lived periods of fatigue.
I didn't think it would be necessary to pin down when it happened for treatment purposes, but I figured docs would ask, and I'd rather bumble around now trying to come up with a reasonable guess than when I'm sitting in someone's office!
Thanks for your feedback, TF.
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(breaking up the post for easier reading for many here)
[ 06-04-2016, 03:27 AM: Message edited by: Robin123 ]
Posted by TF (Member # 14183) on :
I strongly suggest you start a symptom diary.
Lyme has a 4 week cycle (approx. 28 day cycle). So, mark down when the overwhelming fatigue happens. Write how long it lasts--a few hours, 2 days, etc.
When you begin lyme treatment, you should definitely keep a calendar. You will see that about every 28 days, you will feel AWFUL! You will think your lyme is getting worse and will be all upset. BUT, if you keep the calendar, you will see that it is just a lyme flare. You are due to get one every 28 days or so. Treatment magnifies the flares.
So, start now looking for patterns. Do it for the night sweats and all other symptoms. Just write it on a calendar or make a Word document, chart, etc.
When you begin treating, you will also be told to rate each day (from great to terrible--1 to 10 or whatever). This is another way to see the lyme cycle and to see slow improvement with treatment.
So, keep analyzing what is happening and recording it.
When I had lyme, all of a sudden my energy would be gone and I HAD to lay down, that instant!
We could be at a restaurant and just placed our order. It didn't matter. Hubby had to get the waiter, cancel the order, and drive me home so I could fall down onto the couch.
So, this is typical with lyme. You just "run out of gas." Some have the "spoon story." You have so many spoons. You use a spoon each time you expend some energy. When the spoons are gone, you are DONE. No more energy that day.
Posted by Robin123 (Member # 9197) on :
Perhaps I'm one of the rarer ones here - I have a known tick bite and can date every symptom. Fatigue was a growing symptom in the first couple years. It wasn't crushing, however, so I'm wondering whether you might be dealing with any babesia as well, which can cause profound fatigue?
When the fatigue got stronger, I was introduced to a natural flower pollen product, so I lived on it for a number of years, until the company ended.
The flower pollen gave me my energy back. So that's an idea for you.
Also malic acid and magnesium helped. I think the product is called Super Malic. We're deficient in magnesium, so finding a magnesium product that works is a big help.
Posted by TF (Member # 14183) on :
"Clues to the presence of Babesiosis include a more acute initial illness- patients often recall a high fever and chills at the onset of their Lyme. Over time, they can note night sweats, air hunger, an occasional cough, persistent migraine-like headache, a vague sense of imbalance without true vertigo, encephalopathy and fatigue." (p. 23 of Burrascano)
Babesia flares every 7 days and also every 14 days. I experienced both.
Burrascano says it can flare every few days.
The flare can manifest as overwhelming exhaustion. Or, a feeling of doom.
Lyme causes no obvious sweats (p. 26 of Burrascano).
See p. 26 for a quick list of symptoms for lyme, babesiosis, bartonella, and ehrlichia. It may help you figure out what illnesses you have besides lyme disease.
Posted by SLH516 (Member # 48060) on :
Robin123, do you remember what flower pollen it is? Of course the company you got it from would've gone out of business!
Also, I asked my internist to check my Mg on some recent blood work and it was normal...are levels that are a bit higher better for us, or is normal range fine? Idk where in the range it was, but I can find out.
TF, you give such valuable info. I'm all too familiar with the "hey, I'm feeling better!"..."oh, I'm still feeling like ****" cycle. :-( Actually, I've experienced the back-and-forth, but I hadn't picked up on any specific patterns or cycles, so I'll start documenting the symptoms. That'll be good information to have.
I've had depression since I was a kid, though it's gotten gradually worse as I've gotten older. That happens frequently with bipolar depression, so idk if that would be related to the Lyme/co. No way to know, but meds have kept me pretty stable for years now.
Thanks for the Burrascano link -- I haven't read any of his/her stuff yet, so I guess it's about time.
Posted by Keebler (Member # 12673) on :
- Southern Illinois, where you first noticed intense wave of fatigue as a summer camp counselor, ticks can carry the Missouri strain of babesia. Ticks don't honor state boundaries. -
Posted by Robin123 (Member # 9197) on :
SLH516, it was Cernitin flower pollen, from Sweden, collected by machinery, not bees, so pretty pure stuff. I don't know why the company went out of business - I have never seen better products.
Key indication of need for mg - if you have tight/spasming muscles. Magnesium is needed for the ATP cell cycle to provide energy. It's also used for over 300 enzyme reactions. The borrelia use it for their reproductive needs, so that's why fatigue is one of the early Lyme indications.
There are several kinds of magnesium inputs. You can do a search here by using the Search function at the top of the page to type in the word and read through archived discussions.
Hm - I just googled Cernitin pollen and learned something - looks like companies are selling it - I'm going to make a new post about this - thx for inquiring!
Posted by TF (Member # 14183) on :
Regarding the magnesium level in the blood test you got:
"Magnesium deficiency is very often present and quite severe. Hyperreflexia, muscle twitches, myocardial irritability, poor stamina and recurrent tight muscle spasms are clues to this deficiency. Magnesium is predominantly an intracellular ion, so blood level testing is of little value." (p. 6 of Burrascano)
So, find out which mag test he did and then you will know if you got a junk test or a good test.
See this site to learn about the various mag tests:
In the book "The Lyme Disease Solution" the doctor says "The usual serum magnesium level is of little value because the vast majority of magnesium is inside cells. Better tests would be the red blood cell magnesium or ionized magnesium." (p. 121)
Posted by SLH516 (Member # 48060) on :