posted
My Dr. and I have been unable to pinpoint an actual cycle with my lyme disease. I also do not get sicker around my period. (There seems to be absolutely no correlation there.)
I have been fastidiously logging my "rating" for the day, along with meds, changes, anything unusual, for 3 1/2 months now.
I have been studying the calendar that I log it on, but it took until today to finally notice a possible pattern. The day that it starts to get worse has been 15-17 days from the last day that it started to get worse for about 5 "cycles" now. Before that I was pretty close to "solidly sick", so cycles would be impossible to see. (20 out of 31 days in July I was not functional, but it was due to being on "detox 1" which was too much for my body that does not want to detox.)
Anyway, could this 15-17 day thing that I noticed by my cycle? Does this mean that they Lyme is "growing" in population every 15-17 days?
This disease is SO very confusing... I feel like I have worked almost the hardest I have worked at getting better this past month. I'm gearing up for my Dr. appointment at the end of the month, and hoping that we can figure some things out.
Thanks for thinking about it with me, and for any insights you might have!
Posts: 60 | From PA | Registered: Jun 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My lyme doctor would say that you are flaring every 15 to 17 days.
Interestingly, babesiosis has a 7 day and 14 day cycle. So, it may be babs that is causing these flares.
As soon as my doctor began treating me for babs, I had a 7 day flare cycle. It always started on Friday evening and ended on Sunday evening.
With good treatment, it eventually just flared mildly on Saturday of each week. Eventually, it jumped to the 14 day cycle. I flared very, very mildly every other Saturday. With continued babs treatment, eventually the flares were totally gone. That is how we knew that I was finished treating babs.
So, my guess is that this is babesiosis.
You are correct to count from the beginning of one flare to the beginning of the next flare.
If you are not currently treating for babs, this may be the time to start. Often, after we have treated lyme for a while, the babs or bart comes to the fore.
Some doctors treat for lyme and babs simultaneously, or lyme and bart. Some docs treat all 3 at the same time.
Hopefully, you are now seeing a cycle because you have knocked down some of the disease(s) and so a particular disease cycle is now noticeable.
I don't think this is lyme because the 28 day (or around 28 days) cycle is the only flare cycle I have ever heard of for lyme.
Doctors don't really know what causes these flares. It may be that the particular disease starts its growth cycle then and the meds can kill it then, so you are getting a herx from the toxins of the dead germs. It seems that we aren't sure what these flares represent. I just know that I didn't get the babs flares until I started treating babs. So, it does seem to me that it is a result of killing germs.
When I started lyme treatment, I could readily see the 28 day cycle. I had no cycle before treatment. So, these things just seem to occur with treatment. Hence, the theory that the flare is a herx (die off) symptom.
I suggest you drink lots and lots of water with wedges of lemon squeezed into them, especially when the flare is due. See if that helps you have milder flares.
My doc told me to eat 4 lemons per day! (I never got past 2 per day.) He says that lemons are a natural cleanser of the body and water flushes out everything.
You can also take Alka Seltzer Gold with lemon squeezed into the water. This is a detox method recommended by Dr. H. It has helped many. See if it doesn't lessen the flares.
Posts: 9931 | From Maryland | Registered: Dec 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Mama-awesome job on keeping a daily journal! Huge high five for that.
I am one of those lazy journallers-kept one for the first 3 months.(I really need to get back to doing it daily). It was neat to compare the frequency and severity of my symptoms in the first month-compared to the third month.
I could see some progress when I compared the two.
Everything TF said is bang on.
When you mentioned 15 days, my immediate thought was maybe a coinfection.
My lyme flares the week before my period. then I get my period which sucks at the best of times, so for about 2 weeks a month I'm out for the count.
So I am the same as you-don't really notice a flare during menstruation.
Anyways great job on the journalling! I bet your doc will find that very helpful at your next appt. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Thanks for the information! I just got OUT of the tub and searching everywhere I may have put my last test results... I was recently tested for 2 co infections, and both came back negative, though my Dr. still says it is possible I have them since I have symptoms. I wanted to see which two. I am probably the WORST person to take care of my health, since I forget everything. (Even where I put test results.)
I am definitely doing better than I have. It has been a year since I have been able to rate a day anything below a 5. (1 is the best possible rating, 5 is "symptoms are present but manageable"... I manage them by being up for a couple of hours then resting until I feel better. Those have been my best days for 12 longs months.) For the past month or two, I have had a lot of 4.5's, and even a couple of 4's. (Still mostly 5's, with it going up to 6-9 during the bad times.)
Anyway, maybe we have hit a lot of the lyme. This is slightly encouraging.
I'm looking forward to my next appointment!
And guys... work on your charts! I am so glad I have since July charted. I have been in treatment since last October, and I charted it all for the first 2-3 months, but I was just always sick so I gave up on it for a while. It has become a useful tool though, now that I am not constantly too sick to sit up.
Posts: 60 | From PA | Registered: Jun 2012
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I am so glad I have since July charted. I have been in treatment since last October, and I charted it all for the first 2-3 months, but I was just always sick so I gave up on it for a while. It has become a useful tool though, now that I am not constantly too sick to sit up.
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