posted
I'm very new to this whole Lyme thing - tried for 35 years to get diagnosed. I've been on antibiotics for two months and out of nowhere had 5 amazing days with energy and feeling good. But... it's gone and I'm back to my usual "slug" self. Is it common to go through periods of feeling great and then back to square one? Do the great feelings get to where they last longer?
Any sharing would be appreciated! Thank You
Posts: 4 | From Central Texas | Registered: Jul 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Yes, common for me too.
Every month for about 7-10 days are the worst.
Every week on Thursday...awful.
It seems cyclic and points to ongoing infections for me.
Are you on IV or oral abx or both?
That's great you had five days!
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
Other’s can help you better if you list your med’s and symptoms.
COURSE DURING THERAPY As the spirochete has a very long generation time (12 to 24 hours in vitro and possibly much longer in living systems and may have periods of dormancy, during which time antibiotics will not kill the organism, treatment has to be continued for a long period of time to eradicate all the active symptoms and prevent a relapse, especially in late infections.
If treatment is discontinued before all symptoms of active infection have cleared, the patient will remain ill and possibly relapse further. In general, early LB is treated for four to six weeks, and late LB usually requires a minimum of four to six months of continuous treatment. All patients respond differently and therapy must be individualized. It is not uncommon for a patient who has been ill for many years to require open ended treatment regimens; indeed, some patients will require ongoing maintenance therapy for years to remain well.
Several days after the onset of appropriate antibiotic therapy, symptoms often flare due to lysis of the spirochetes with release of increased amount of antigenic material and possibly bacterial toxins. This is referred to as a Jarisch Herxheimer-like reaction. Because it takes 48 to 72 hours of therapy to initiate bacterial killing, the Herxheimer reaction is therefore delayed. This is unlike syphilis, in which these reactions can occur within hours.
It has been observed that symptoms will flare in cycles every four weeks. It is thought that this reflects the organism’s cell cycle, with the growth phase occurring once per month (intermittent growth is common in Borrelia species). As antibiotics will only kill bacteria during their growth phase, therapy is designed to bracket at least one whole generation cycle. This is why the minimum treatment duration should be at least four weeks.
If the antibiotics are working, over time these flares will lessen in severity and duration. The very occurrence of ongoing monthly cycles indicates that living organisms are still present and that antibiotics should be continued.
With treatment, these monthly symptom flares are exaggerated and presumably represent recurrent Herxheimer-like reactions as Bb enters its vulnerable growth phase and then are lysed. For unknown reasons, the worst occurs at the fourth week of treatment. Observation suggest that the more severe this reaction, the higher the germ load, and the more ill the patient. In those with long-standing highly symptomatic disease who are on I.V. therapy, the week-four flare can be very severe, similar to a serum sickness reaction, and be associated with transient leucopenia and/or elevations in liver enzymes.
If this happens, decrease the dosetemporarily, or interrupt treatment for several days, then resume with a lower dose. If you are able to continue or resume therapy, then patients continue to improve. Those whose treatment is stopped and not restarted at this point usually will need retreatment in the future due to ongoing or recurrent symptoms because the infection was not eradicated. Patients on I.V. therapy who have a strong reaction at the fourth week will need to continue parenteral antibiotics for several months, for when this monthly reaction finally lessens in severity, then oral or IM medications can be substituted.
Indeed, it is just this observation that guides the clinician in determining the endpoint of I.V. treatment. In general, I.V. therapy is given until there is a clear positive response, and then treatment is changed to IM or po until free of signs of active infection for 4 to 8 weeks.
Some patients, however, will not respond to IM or po treatment and I.V. therapy will have to be used throughout. As mentioned earlier, leucopenia may be a sign of persistent Ehrlichiosis, so be sure to look into this. Repeated treatment failures should alert the clinician to the possibility of an otherwise inapparent immune deficiency, and a workup for this may be advised. Obviously, evaluation for co-infection should be performed, and a search for other or concurrent diagnoses needs to be entertained.
There are three things that will predict treatment failure regardless of which regimen is chosen: Noncompliance, alcohol use, and sleep deprivation. Advise them to take a break when (or ideally before) the inevitable mid afternoon fatigue sets in (napping is encouraged).
All patients must keep a carefully detailed daily diary of their symptoms to help us document the presence of the classic four week cycle, judge the effects of treatment, and determine treatment endpoint. One must follow such diaries, temperature readings in late afternoon, physical findings, notes from physical therapists, and cognitive testing to best judge when to change or end antibiotics.
Remember- there currently is no test for cure, so this clinical follow-up assumes a major role in Lyme Disease care.
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
yes, ups and downs all along, sorry to say. try to make the best of those good days!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Hi and thank you for the responses! I'm on amoxicillin 1500mg and Plaquenil - twice a day - sorry I don't remember the dosage. I was supposed to be on a third antibiotic but had a bad reaction to it and will be seeing my doc in the next couple of days. I imagine he'll be replacing that one with another one.
All of these are oral meds - have never had the IV ones - yet.
Well after moaning about the down time I shot right back up again to energy!!! It's been two weeks to the day since my last energy boost so perhaps I'll have a two week cycle???? I guess it's all one great big learning experience!
I just feel SO blessed to have had some energy! After probably 10 years of none it's VERY exciting to behold!
Thanks again! Bea
Posts: 4 | From Central Texas | Registered: Jul 2014
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