So, the good news is that I seem to be doing much better... many better days... fewer bad days. The bad days are primarily on my 4-week cycle days. So about every 28-29 days for 1-3 days I feel blech. Does this indicate anything? Is there anything I should do treatment-wise to knock out this "monthly herx" effect?
Posted by bellajo (Member # 28738) on :
My understanding is that lyme cycles. I can pretty much predict, within a couple days or so, when I will get symptoms.
I don't know what to do myself. I try to detox before and during these days -- epsom salt baths and drink lemon water.
Posted by TF (Member # 14183) on :
Just continue treating. Continue keeping track of the cycles. Let your doctor know month to month if things are getting better or staying the same. Keep track of number of good days versus bad, etc.
The doctor relies on the patient's reports to know if the patient has plateaued and therefore needs a medication change or if the patient is continuing to improve on the current protocol.
What you are describing is typical and can be expected to continue until you are done treating lyme.
Congratulations to you that you are getting more and more better days and fewer bad days.
I echo the above advice to drink lots of water with fresh lemon in it, especially when the bad days of the 28 day cycle are going to occur.
Posted by thomasx (Member # 13431) on :
The whole monthly cycle is quite interesting. I generally try to forget about my symptoms while I go about my busy day-2-day life. However, some days the symptoms are elevated and harder to ignore. After awhile I noticed that they were occuring about every 28 days or so, like clockwork. In fact, just for fun, I wrote a little computer program that works out the dates into the future months. When I'm feeling funky, I check the date and my little table and voila. "Like a glove." Fascinating.
Posted by TF (Member # 14183) on :
I wrote "bad day" on the next month's calendar to tell me when the bad time was going to be.
Then, I made sure I didn't plan anything important on those few days. This way, I knew I could just take it easy if I wanted to.
It is almost 7 years now since I completed my treatment. Almost seems like a dream, it was so long ago.
Posted by thomasx (Member # 13431) on :
How long did your recovery take after you got to the place where your primary bad days were these monthly days?
Posted by TF (Member # 14183) on :
I did not have a good lyme doctor and was not getting adequate treatment for about 1 1/2 years.
I plateaued and stayed there. So, my experience will not be helpful to you.
Once I got to a good lyme doctor, he treated me for lyme (this time, with a cyst buster included) for one month. Then, just the cyst buster for another month while he added bartonella treatment for one month. (So, he treated my lyme for a total of 2 months.)
Then, babesiosis treatment for 11 months. Then, I was done. 30 days to restore the gut at the end of treatment.
So, as you can see, if you have coinfections, you also have to go after them. My inadequate previous lyme doctor did not worry about coinfections, didn't test me for them, etc. So, that is another reason why I had to switch lyme doctors.
You live and learn. So, if you have not treated coinfections, if you stop lyme treatment, expect that within 2 weeks you will be back to square one. You can't get rid of lyme if you have untreated coinfections.
You can have them even without any symptoms of them. That's the way it was in my case. In fact, it seems to me that Burrascano is now saying that EVERYBODY has coinfections. That corresponds to my experience helping many, many lyme patients.
My new doc tested me through Igenex (at least 2-3 different tests for each co.) and that's how it was discovered that I had 2 other diseases--not by any symptoms.
So, you can't always go by symptoms. If you have no symptoms, but you quickly relapse as soon as you stop lyme treatment, think coinfection.