posted
I am new here. I was experiencing severe fatigue and light-headedness in February. I was unable to work and ended up with a diagnosis of neurally mediated hypotension (positive tilt table test).
I received beta blockers and began to get better. I was able to return to work although never got up to 40 hours a week. I'm a graduate student and so my schedule is very flexible - if I don't get the work done, it just means it'll take forever to get my PhD. And that eventually my salary will run dry. I didn't even have to do FMLA for not working March & April.
Now it is starting again. The last time, my boss got annoyed with me. She has three children who all have medical issues, so I was very surprised she wasn't understanding. I think that I failed to communicate the state that I was in. I want to communicate clearly this time.
My boss is a scientist and so it is best if I go into this conversation armed with facts. My question to you all is, is this cycle of flares ~4 months apart common? Is it something I can explain in terms of the bacteria's life cycle or something like that?
I'm looking for good scientific resources on this although anecdotal would be better than nothing.
I have read Dr. Burrascano's guidelines and he says it's been observed that symptoms will flare in cycles every four weeks. This isn't what I'm experiencing. I've been experiencing a gradual decline over the past 2 weeks that suddenly accelerated. I experienced the same thing in February/March, and it got much worse before it got better.
Thank you very much for your help.
Posts: 25 | From PA | Registered: Sep 2011
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
When I first got ill I was very sick for about a week then got better. Then a year later I crashed with POTS (hypotension) and a slew of symptoms. Im not sure about your 4 month cycle, but if you are positive for lyme (get tested thru Igenex if you haven't already). You should get treated before you feel sick all of the time.
Perhaps a positve lab test and diagnosis would get your boss off your back?
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You may not really be experiencing a 4 month cycle. What you could be experiencing is the beginning of feeling sick from fall until spring, and only feeling good in the warm, summer months. Many lyme patients notice this in the beginning.
As the lyme progresses, you won't even feel good in the summer. But, just letting you know that lyme is definitely often episodic in the beginning.
I had this warm weather/cold weather pattern for the first 5 years I had lyme. I would be sick for 7 months and then well for 5 months. So, as time goes by, you will see if you are fitting into that pattern.
I don't have any documentation for this pattern. It is just being on this board for 7 years that has shown me that cold weather is harder on folks with lyme than is warm weather.
As I say, this can go on for a while before you are just plain sick all the time.
In March, it was 6 years since I completed my lyme treatment and I am still symptom free, enjoying my life.
I got symptom free just as winter was approaching. My lyme doctor told me winter is a stress on the body, and so could cause me to relapse if I stopped treatment that time of year. Therefore, I had to continue taking high dose antibiotics ALL WINTER LONG UNTIL SPRING CAME before he would allow me to stop.
That is the only "proof" I have about what I am saying. It is not the life cycle of the bacteria. It is more about the body's immune system (which has to keep lyme in check) having more stress on it in cold months.
In the winter, there is more sickness in general because we are indoors, cooped up together, spreading our germs. Outdoor air is safer than indoor air.
Also, the body has to work harder to stay warm in the winter, so that is a stress on the body.
Sick, frail older people start dying before Thanksgiving, if you ever noticed. There always seem to be a lot of funerals among the elderly from before Thanksgiving until Christmas. That is the inability of their bodies to deal with the stress of cold weather.
Lyme likes cold and dies with heat. That is documented somewhat in Burrascano here:
"Although the scientific basis for the benefits of exercises is not known, there are several reasonable theories. It is known that Bb will die if exposed to all but the tiniest oxygen concentrations. If an aggressive exercise program can increase tissue perfusion and oxygen levels, then this may play a role in what is being seen.
Also, during aggressive exercise, the core body temperature can rise above 102 degrees; it is known that B. burgdorferi is very heat sensitive. Perhaps it is the added tissue oxygenation, or higher body temperature, or the combination that weakens the Lyme Borrelia, and allows the antibiotics and our defenses to be more effective." (page 31)
Many folks with lyme report a low body temperature--generally up to several degrees below normal. That changes back to normal once they get rid of lyme. Could that be the power of lyme to create the cold environment that it loves? I don't know.
None of these infections--lyme or any of its coinfections--have a 4 month cycle. So, you will have to look elsewhere for the explanation. Perhaps time will tell. But, with this crazy disease, if you said that you are regularly experiencing 4 months of relative wellness followed by 4 months of sickness (4-month "flares"), I would believe it. Having had lyme myself has made me a believer in even the craziest symptoms. I experienced many of them.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I wonder whether a change of meds could have triggered the worsening symptoms? I very slowly improved over the first three months of treatment but plateaued in month four so we switched meds. Month 5 was awful, awful, awful and I blame the change in medications/target infection.
-------------------- ------------ 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
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posted
Jamers, thanks for sharing your experience. I want to get treated ASAP. I'm in the process of choosing a doctor and should be making an appointment in the next day or two. I'm going to ask my PCP to do Igenex testing. I'm not sure that he would have the knowledge to interpret it. Also not sure if my boss will be any more understanding with a diagnosis, but we'll see.
TF thanks for your thorough reply! You are right, since I have only experienced two major episodes it's impossible to say if this cycle will continue. Perhaps a bit of wishful thinking on my part! If I'm sick for 2 months, well for 4, and that repeats, I can still manage to get my PhD. (I'd be about a year away, if I were healthy.)
But I guess it's time to stop focusing on my PhD and focus on my health. I hadn't really considered the possibility that I'd be sick from now until next summer. Or beyond. I just have to hope and pray that I can afford all the treatment I'm going to need.
sbh, I haven't yet really been treated for Lyme, only neurally mediated hypotension (similar to POTS). However I have gone through a change in my meds lately - have been trying to get off of Effexor. I've been doing it very gradually but my decline did start around the time I dropped down to 1/2 of a 37.5 mg capsule. It's something to think about.
Thanks everyone for your input.
Posts: 25 | From PA | Registered: Sep 2011
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