posted
TF posted a great quote about timing of symptoms and corresponding treatment to Nicole's thread. It is about the importance of continuing treatment when the four-week cycle of symptom flares is evident. I was going to respond to that thread but realized it would be like hijacking it.
I don't mean to confuse anyone on this issue, but if the flare is every four weeks how can someone say that week four of treatment will be the worst?
Meaning, what if the bacteria were in week 2 of their cycle when you started treatment? Wouldn't the worst flare then be two weeks later, not four? Do the bacteria adjust their schedule when we start treatment? [just making a point ] Also, do we know that all the bacteria within a body are in the same stage, especially when some can hide or go dormant for awhile?
Sorry folks, but since learning about lyme all discussions about timing of herxes and symptoms in general seem very flawed, and I feel like trying to put logical order into it just makes us focus more on day-to-day symptoms then on overall progress and feeling better. I worry that analyzing the ups and downs of every one of 50+ symptoms rather than the overall picture just will make people depressed (more than we may already be anyway).
For example, I have been treating for eight weeks now. I have three never--before-seen symptoms while a few others are starting to ease up. I'm sure I'll still be asking people on here about some of them for reassurance, but otherwise I know I have to let it go or I'll just be a basketcase every day.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
| IP: Logged |
posted
I totally agree. I get very blue reading here and have stopped visiting as often--because I don't fit any of these ideas of symptom flares or herxes. So I feel like I'm not getting the right treatment if I have no herx, etc. I have wanted to ask questions about length of treatment etc, but there IS no answer cause some are back to normal after 2 yrs, 6 yrs, and not back to normal after even 10 years. So I have quit analyzing. When people ask me how I am, I usually say I have good days and bad days and I think that I might be having a few more good days I believe that everyone is different and you can't count on any kind of pattern. Also, of course you're right that the bugs don't sequence their lifecycle on when we started antibiotics!
Posts: 236 | From Zionsville IN | Registered: Jan 2011
| IP: Logged |
posted
Thanks so much for your response, Beth. It's good to know that I'm not the only one confused by the cycles information.
Maybe there's some obvious explanation I've missed that makes it all clear? I wouldn't put it past my brain to have misunderstood something I've read. My brain went on strike about a year ago.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
| IP: Logged |
posted
wow. I am still trying to absorb this treatise, but I have no menstrual cycles, and neither do men. How is this explained in men and in menopausal women??
Posts: 236 | From Zionsville IN | Registered: Jan 2011
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I have never had obvious symptom or herx cycles. I've been infected for over 20 years, and in treatment for 3 years.
I herx every day, 1-2 hours after taking my antibiotics. Sometimes it's mild (headache). Sometimes it's dramatic (exhaustion! pain! where's my brain?!)
I believe my bacteria do adjust to the antibiotics, to some degree. When I take a break from antibiotics, I still herx at the same times of day. How weird is that? But that phenomenon only lasts a few days when I'm off abx.
But I don't "flare" in relation to antibiotics. I don't even think I flare. Like you state, I have a variety of symptoms that come and go and vary in severity.
I am making excellent progress on my antibiotics. I hope the 3-year and counting timeline doesn't intimidate you. I've had periods of being nearly symptom-free, but I am choosing to treat until I am completely symptom-free.
posted
I'm not sure what this thread is about. Bad brain fog day maybe?
But I have had the four week cycle for three years, even when my female hormones/menstrual cycle has been all over the place and even when it (menses) flat out went away. I know a lot of women get worse on their menses but you're right Beth, that can't just be all there is.
I thought it was common knowledge that the bugs take 3-4 weeks to replicate, or whatever word you want to use? Mycoplasma has a similar, slow growth rate. Most antibiotics only treat the infection during this phase, which is why Lyme treatment takes so much longer than the coinfections (which replicate every few days--many more chances to kill them).
I'm in my "Lyme week" right now, which is about four days of worse Lyme symptoms. Every time I've ended up in the hospital has been during this "lyme week," as well.
After a few doses of grapefruit seed extract (a cyst buster?) I started getting two sets of cycles. After four months of Rifampin (also a cyst buster) that second cycle, is gone. I still have my "original" one.
I also get bartonella flares every five to six days.
I think it says this in the burrascano guidelines: IF YOU HAVE the cycles, they can help guide your treatment. If you don't, then it doesn't apply to you.
A lot of people can't figure that out because their symptoms are all over hte place. But a lot of us do have a symptom cycle, and we can use it to help figure out how well treatment is going. I've noticed now, I dont' have fevers with my Lyme cycles. This happened the first time I treated, too.
Hope this helps
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i think it is pretty well agreed by the llmds that if you got infected by ONE bite ONCE then the cycle may happen
but so many of us have been bitten so many times we have many different groups of bugs reproducing inside us at different times so the BAD week doesn't really stand out
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
quote:Originally posted by lpkayak: i think it is pretty well agreed by the llmds that if you got infected by ONE bite ONCE then the cycle may happen
but so many of us have been bitten so many times we have many different groups of bugs reproducing inside us at different times so the BAD week doesn't really stand out
Yes...or if you start a cyst buster and open up more spirochetes that previously weren't causing symptoms. It's a mess!
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
| IP: Logged |
posted
I have logged symptoms daily since May 2008, along with abx/sup protocol, diet, exercise and basic measures such as weight, pulse and blood pressure. I have crammed all lab findings into Excel. Data is part of work and I have done it as an athlete for years.
The symptom cycle has been a challenge. I have had one real cycle over the years. 14 days +/- 1 day on the headspiltter headaches.
I noticed, like Dr. B's has noted, increased sweats on day 4 and at week 4 of Mepron/Zith. That was two plus years back.
I have noticed a bit of a pattern since I started Rochepin. I was a mess when I had the PICC installed. Stiff necked, tired and brain fogged. A couple hours after the first dose I felt extreme emotions. Then I felt better over the next week.
4 weeks later the emotions came back hard and then I felt better. Earlier this week the emotions were like a wave over me.
March 21, April 20 and May 19.
Still I do not know for sure if it was a herx, or if I am just sicker than ever. Or if the meds/sups just make me feel like crap.
So I I tend to cringe when I see posts where people speak with definatives. This symptom is caused by this illness. Take this med for this illness.
Sometimes it just sounds insane. But whatever it is sounds less insane if the collective experience is the same.
So I keep on the data, and I keep reading because last I checked I am not well, still.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
| IP: Logged |
posted
Wow--thanks for all the input! Lpkayak, multiple tick bites makes sense--I'm sure I'll never be one to notice a general cycle, though I have noticed it for certain symptoms (and they don't line up with each other at all).
Boxermom, I experience that too, about a couple hours after abx every time. I thought I was nuts.
Little olive, I probably could have asked my questions more clearly. But you hit my questions with helpful answers spot on! You affirmed my suspicion about multiple cycles happening at once.
JMB, it's good to know that people who've been treating a long time still can't be sure whether something is a herx or med reaction, etc. I respect your decision to track everything for sure, and can see it's usefulness. I just think in my case it would be a bad idea, at least while I'm still in shock from these last few months and trying to pull it together.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
] Also, do we know that all the bacteria within a body are in the same stage, especially when some can hide or go dormant for awhile? 
![[Big Grin]](biggrin.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic