posted
As I try so hardd to research on my own this illness I have been battling for 4 years new and different questions arise.
Do lyme patients ever go into remission or have flares that are up and down? I guess I am talking late stage lyme- I was bit at 2 and am now 35. DX lupus but now having it questioned as lyme.
I am well during the warm seasons. i livein iowa so from May to September I am usually 100% healthy. But from October to April I am chronically ill. Common for those with lupus- but is it common with chronic lyme to actually have times of 100% wellness??
Posts: 21 | From iowa | Registered: Oct 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I was bitten many, many times back in the early 1970's. I got very ill about 7 years ago. I am completely in remission or cured, don't know for sure, but I am 100% well.
I don't feel bad in the colder season unless I catch a cold or the flu.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I sorry to ask so many things but I have spent 4 years of my life "wasted" it feels being so sick and docs have ran me back and forth 100 places and different meds and so on.
I am trying to sort through answers myself I guess by talking to others living with similar stuff.
My GP wants the lyme testing. I am going to do but have to wait until I am off meds for an infection.
Posts: 21 | From iowa | Registered: Oct 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Are you asking are we ever well before getting treated? Does Lyme remit/relapse on it's own?
Yes - it can remit/relapse on it's own. Though some people just get sicker and sicker, others can have good periods interspersed with the bad.
I had that experience...
You might know this already:
I was bitten at 11 - have my records with the bullseye rash and was sick for quite some time, needed home tutors for school, etc.
- Incidentally, one thing they did way back then in the early 80s was give me prednisone which made me feel better, symptom-wise. We now know that wasn't ideal, but it happened.
But after that initial period... I had periods when I was very, very well - even prior to diagnosis/treatment.
Enough to distance hike/camp every mountain range I could find.
I would get sick periodically for 6 mos at a stretch - but usually it was in the fall/winter - occasionally spring. Late spring/summers are always my best times.
Now that I've had been in treatment for some time, and doing very well - this winter was a breeze. Nice change!
My LLMD says I had remitting/relapsing Lyme.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Yes that is what I mean exactly. My doc has been flustered with my relapsing and the pattern and thought it would be one indicator it isn't lyme so i want to hear what other shave experienced this way. Each year for me like clock work I am completely well even this summer we had a very cool summer- but I still was completely well.
You know me, and know my horses. In the summers I am able to ride everyday for 2 hours at a time, show on the weekends, camp with my family, hike everything like I had never been so sick in my life.
but my hay fever season here- late august I start downhill slowly and by October I am so sick and in so much pain I can barely function. Then usually about december I have a breif well time- from then until about mid january- then I fall ill again until may.
This is a a 4 year pattern that has been steady and true.
Posts: 21 | From iowa | Registered: Oct 2008
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posted
I dont know if this relates, but our Vitamin D levels fall during the cooler months. Vitamin D helps regulate our immune system. Checking Vitamin D levels during that time may help.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I was going to mention Vitamin D, too.
I didn't understand your question in your first post. Yes, Lyme has it's ups and downs.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
For at least the first 5 years I had undiagnosed lyme disease, I had it episodically. I would wake up one day sick as a dog, unable to do anything due to horrendous fatigue and extreme muscle weakness. I could not stand for more than a few minutes at a time.
This would last for maybe 6-7 months. Then, one day, I would wake up and it would be totally gone!!
This seemed crazy to me. But, when it would leave, I would be so happy that I just hoped and prayed it would never return. When it returned, I would go from doc to doc to find out what was wrong. None of them ever discovered anything.
I am not the only one I know that has had this experience, and, as I say, it could have gone on this way for 10 years. I wasn't counting until the sick times became a regular occurrence. I know for 5 years, I could not go an entire year without a sick time. I would have about 5 months in a year of being well, and 7 of being sick.
When I was well, I was climbing 7-story Mayan ruins all day long in Guatamala, just as an example. So, the difference in how I felt "sick" and "well" was really extreme.
Then, eventually, I was just sick all the time. It took 5 years of being sick all the time and getting many, many more symptoms before any doc finally tested me for lyme disease. Voila!!
I have spoken with a number of people with the fibromyalgia diagnosis who recalled first having episodes of illness for years before finally getting "fibro all the time."
So, you are not alone by any means. When I told my final lyme doc my story, he said it was common. So, lyme can be episodic for years and years before it ever becomes continual.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you all! just what i needed to hear to consider the lyme issue
Posts: 21 | From iowa | Registered: Oct 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I had a similar pattern to cactus and I believe it is very common in lyme patients.
I was bitten at age 5. Was sick off and on for decades but had some very good years in there, especially after a long stretch of abx for bladder infections. Stress of any kind (physical or emotional) would bring it on. I don't remember a correlation with winter but I didn't pay any attention to that.
I was thinking that mold could be a big issue for you. Mold brings down the immune system and would allow borrelia to come out. Mold typically gets a lot worse in the winter. Mold + lyme = disaster for some of us. Just a thought.
I hope you get some answers.
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I keep telling my family doctor I believe I have persistent lyme that remisses and then relapses. I think he is finally starting to believe me, but doesn't know how to treat me. Has offerred to work with suggestions of a doctor more versed in Lyme though. Now I just have to find a doctor like that who accepts my insurance and will advise my current family doctor. I was diagnosed with Lyme in 1996 and again in 2002 both times with tick bite and bullseye rash among other symptoms(Lyme blood and spinal PCR never came back CDS positive though although had some positive bands for Lyme). Seems after a course of antibiotics I feel fairly well for awhile, but after off them sometime, health problems (mainly severe headaches, fatigue, muscle cramps and brain fog) seem to return with no explaination. Well, doctors say CFS, depression, fibormyalgia. It is interesting to hear others with lyme say the same thing happens to them. Yes I believe it can remiss and then flare. My question is how should the flares be treated? ABX seem to work for me, but doctors say that is just a placebo effect, and they instead want to hand me antidepressants and, pain killers that I don't want to take. Are taking antibiotics really more dangerous than taking antidepressants and pain killers or steroids?
Posts: 35 | From Reading, Pennsylvania | Registered: Mar 2010
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posted
I think all drugs are dangerous, so you should pick the one(s) that will actually address the cause of what you have.
Painkillers and antidepressants may or may not help, but they address symptoms, not causes, and they can have side effects.
Steroids will not only not help for Lyme, but can make it much worse, or cause a relapse in someone who had gotten better, by lowering your immune system so it can't fight against Lyme.
Antibiotics have their own risks, so you have to take probiotics to prevent yeast and c. diff. infections, and something like milk thistle to help prevent damage to your liver, etc. But they kill bacteria, so if that's what is making you sick, they have a chance to fix it.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
I know someone who has been on doxycycline continuously for 9 years for acne, and always gets the prescription renewed. No other problems from the drug--no nausea or sun sensitivity or yeast problem. Insurance has no complaint about covering it.
Doctors routinely give out antibiotics for minor conditions and even for viral colds and asthma, for which they won't do any good. Apparently they are not so concerned about the safety of it if the drug is for anything else but Lyme.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
I was the same way - April thru November I was pretty good, able to work and somewhat enjoy the summer. About 6 yrs ago I was placed on heavy steroids for ulcerative colitis and severe joint pain, guess what happened? I became very, very ill within a few months and Iv'e been fighting my way back ever since. Surprisingly my abx treatment for lyme and wa1 "cured" my UC. I know I have had this since the early 80's. Military records verify it. Just wished they had known about it then!! Still Tickn
-------------------- "We can easily forgive a child whom is frightened of the dark: the real tragedy is when men are afraid of the light." Plato Posts: 37 | From OuterBanks NC | Registered: Apr 2007
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