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Posted 1/15/2009 2:16 PM (GMT 0)
I went off antibiotics a few weeks ago (after 3 and a half months). For the first week or so after the abx, I felt OK - I've been trying to work out 4 times a week even if it's just for a little bit. Last week, I had a very nasty period that made me sick. This week the achyness and stiffness has come back along with fatigue and just the general "bad" feeling I had at the beginning. I am worried that this means the lyme has come back already or that it wasn't killed off enough when I got off abx. I am worried that it's lyme related but am thinking it could just be the January doldrums or my body adjusting to normal activities or something. I'm going to report these symptoms to my doctor next week but I'm dreading the possibility of getting a bad report from him. Has anyone had a similar experience? I thought that I'd be improving gradually instead of getting worse periodically.

Also, should I have my bloodwork re-done? I've heard that a couple of your bands can still be positive for a lonnng time even if you're clear of lyme pretty much.

Posted 1/15/2009 2:26 PM (GMT 0)
I would have my blood work re-done.. Before I got sick and I would start a new exercise program my body would hurt for weeks. it could be just that.
Or it could be that you did not kill off all the Lyme. I would spend the money and check to see if you still have it or maybe even Co-Infections. Were you checked for Co-Infections?
Posted 1/15/2009 2:30 PM (GMT 0)
I was never checked for co-infections but I don't have any of the co-infectoin symptoms... I didn't even have lyme AS bad as some other people on this forum. I believe it was caught pretty early by chance - I never woudl have thought that I had lyme
Posted 1/15/2009 2:45 PM (GMT 0)
Well there is not real way of telling if it's lyme or not.

Are the symptoms you're having the same as before you did abx?
You say you're working out 4 times a week, are you eating enough to replenish the energy?
Are you well hydrated?
Posted 1/15/2009 2:52 PM (GMT 0)

Hi abanana07, welcome to the board!

How long were you sick before getting diagnosed? Are you having the same kind of symptoms as when you were diagnosed?  Were you treated aggressively and was it by a Lyme knowledgeable doctor?  Many doctors under-treat tickborne illnesses.

I believe it is important to be tested for the co-infections Babesiosis, both types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many people who have Lyme are co-infected, and it may affect treatment choice and progress.

Which test did you have done initially and which lab did the testing?

Posted 1/15/2009 3:04 PM (GMT 0)
Hello,

Thanks for responding. Peacesoul I stay hydrated and eat plenty - the symptoms are similar to how I felt before antibiotics.

Ticker, I started feeling bad last Spring - I passed out at the gym one day (the doctors ruled out any heart complications) and ever since then I just didn't feel right. I had been doing a lot of walking and running outside so that's probably when I got it. I was tired and achy all the time (sometimes with fever) and thought it was my thyroid. I saw my endo at the end of the summer and he insisted I get tested for lyme. I got the western blot, igg and igm at quest diagnostics. The doctor I see is very familiar with treating lyme as I live in an area where lyme is very common.

What kind of tests should I ask for for the coinfections? I think that I would know by this time if I had one of the co-infections. I don't have any symptoms of them. My main symptoms while very sick were fatigue, achy joints, weakness, and sometimes lightheadedness.
Posted 1/15/2009 3:06 PM (GMT 0)

abanana07 said...
I saw my endo at the end of the summer and he insisted I get tested for lyme. 

This is something I don't see a lot  :-)

I hope more dr's suggest to their patients to get tested.

When you passed out at the gym, were you lifting weights or doing cardio?

Posted 1/15/2009 3:10 PM (GMT 0)
I know - I am SO LUCKY for that doctor. Before I got the results back I was like - "this is crazy, I can't have lyme. I'd be waaay more sick."

I'm in Montgomery County MD - lyme is SO common here it's unbeleivable and a tragedy that nothing is being done about it. My dr. says he now tests anyone complaining of fever in the summer for lyme just to be safe.

I was doing some lifting and a little cardio - nothing more intense or out of the ordinary from my normal routine. I had had plenty of water that day and eaten a small snack an hour before. It really was out of the blue. I started feeling lightheaded and just sat down where I was before passing out.
Posted 1/15/2009 3:35 PM (GMT 0)

Hi abanana07.  If you were sick for several months before starting treatment, you may not have been treated long enough.  Most Lyme doctors will treat until the person is symptom free plus at least two months longer.  Which antibiotics and doses have you taken?

Thyroid disorders can cause some similar symptoms of Lyme.  Do you have hypothyroidism or Hashimoto's?  Does your doctor regularly test your Free T3 and Free T4 in addition to the TSH?

Many symptoms of Lyme and co-infections can overlap.  Quest is not the best lab for this testing.  They do not list all the Lyme-specific bands on the Western Blot that IgeneX Lab does.  You may want to consider getting tested there.

 

Posted 1/15/2009 3:52 PM (GMT 0)
Hi ticker - I would say I was actually sick and really not feeling well for 6 weeks before I got tested. The endo tested my thyroid (all levels as well as cortisol levels, prolactin, etc) at the same time i got tested for lyme. My mom and dad both have thyroid disease and I may develop it one day - but for now, he said my levels are all within normal range. He tests me every 6 months to make sure these are stable.

Unfortunately, quest is the only lab on my insurance plan. I started on doxy 200 twice a day and then switched to cefuroxime 100 twice a day (since the doxy was too hard on my stomach). My doctor kept me on antibiotics until I was feeling a bit better and then for another 4 weeks after that just to be safe. I was planning on having the blood work re-done in like February or something. I have a follow up visit with my doctor next week and will ask him then about co-infections. My guess is he's going to say that if I am feeling well enought to work out for little bits at a time that I am probably fine. I just hope that like a month from now it's not going to be worse. He did say when I went off abx that it takes 6-8 months to really feel well and be back to normal again.
Posted 1/15/2009 4:04 PM (GMT 0)

abanana07 said...
I know - I am SO LUCKY for that doctor. Before I got the results back I was like - "this is crazy, I can't have lyme. I'd be waaay more sick."

I'm in Montgomery County MD - lyme is SO common here it's unbeleivable and a tragedy that nothing is being done about it. My dr. says he now tests anyone complaining of fever in the summer for lyme just to be safe.

I was doing some lifting and a little cardio - nothing more intense or out of the ordinary from my normal routine. I had had plenty of water that day and eaten a small snack an hour before. It really was out of the blue. I started feeling lightheaded and just sat down where I was before passing out.

that is good news that dr's are waking up a little. I had a dr ask me if I was in CT b/c i have Lyme. I'm in canada and the dr's here believe there is no lyme in the entire country. Dr's are so out of touch with what's really going on.

I work out all the time (well when I am strong) and I get lightheaded a lot when I lift weights and always fear passing out. Do you think the passing out was related to lyme or something else?
Do you still get lightheaded when you work out?

Posted 1/15/2009 4:49 PM (GMT 0)
Hi Peacesoul - usually I only get lightheaded while working out if I am REALLY pushing it. But when I passed out it was different and I felt sick for the next day or two. I believe it was related to the lyme because ever since that happened I just did not feel right. I went to 4 cardiologist appointments and they said I was fine. They did say though that my bloodwork showed that it looked like I was fighting some kind of infection. They thought it could be a UTI which I obviously did not have. They said I was probably fine and to come back if the fainting happened again. Ever since then I kept telling my family I just didn't feel right, something was off. I guess I found out what it was!
Posted 1/15/2009 4:53 PM (GMT 0)
Just curious, why did you go off antibiotics if you knew you were not 100% yet? I would try and get back on them right away.
Posted 1/15/2009 4:58 PM (GMT 0)
ABA, I know what you mean about just not feeling right.
I was not even lifting and just driving to work last yr and I didn't feel right and poof, started to pass out in traffic. Scary I tell ya!

I would either get back on a low dose of abx or try some herbs since you more than likely lowered the germ level. You sound like you're super healthy so keep that up and I am sure you''ll fight this
Posted 1/15/2009 4:59 PM (GMT 0)
I thought I was 100% - I was feeling A LOT better a few weeks before going off than I was through all the herxes and what not. I was feeling really optimistic that I had beat it and bloodwork I had done in November showed a huge improvement from the original bloodwork they used to diagnose me. At that point my doctor said let's stay on the abx for another 4-6 weeks (which I did). I am feeling better more often than not and I know I'm probably going to be paranoid for a little while that every little symptom I have is lyme related - but my primary concern was whether it was possible for lyme to bounce back (quickly) like that after 3+months of heavy abx. Maybe I'm still purging some toxins or something or maybe I'm just paranoid...
Posted 1/15/2009 5:00 PM (GMT 0)
Thanks for the advice peacesoul! Do you use herbs or supplements? (if so, which do you recommend?)
Posted 1/15/2009 5:18 PM (GMT 0)
I was on abx for about 5 months, got off, tried again for a month or so, then decided to just strengthen my body with a cleaner diet and a lot more working out.
I did do cyccles of herbs like Olive Leaf extract, oil of oregano and suppliments and they were helping. But I also was dx with Lupus, so still struggle with that.
I'm so unsure if lyme causes the lupus effect me, but as we know, these illnesses are such a mystery.

I've tried homeopathy and it didn't do much for me. I am a lot better than I was a yr ago, but still have some bad days.

And what you say above about "purging toxins" can be a huge possibility. Were you detoxing while on abx?
Posted 1/15/2009 6:22 PM (GMT 0)
That has been my philosophy as well - working out and eating well. In fact, I think that the reason that I wasn't more sick by the time I was diagnosed was that I was in really good physical shape and my body was just in better shape to fight the infection off initially. I've always been the kind to try to "sweat it out" at the gym whether I'm under physical or emotional stress.

I have heard of people using oil of oregano and I will look up that and olive leaf extract. I'm looking into doing a really good vitamin/mineral/supplement program through pharmanex. I wasn't detoxing much on abx except for occasionally using a sauna. Now I am trying to use the sauna at least twice a week. I assume that the lupus complicates your detoxing and lyme treatments - has that been a problem? Do you think the two are connected?
Posted 1/15/2009 7:17 PM (GMT 0)
hi peacesoul! I would like to join abanana07 `s last question about your experience / assumptions about connection of Lupus and Lyme; there is somebody in my familiy with Lupus erythematodes and I wonder if Lyme may trigger Lupus. Did you get Lupus after Lyme? Have you been tested negative for Lupus before you got Lyme?
Thanks in advanve for answering; dorit
Posted 1/15/2009 7:59 PM (GMT 0)
Aba, lupus was never an issue when detoxing. I was detoxing with baths, lemon water, milk thistle etc
I really do think the lyme and lupus (or other auto immune illnesses) are connected. If I go by instinct that is.

Dorit: I got ill like 16 yrs ago with what I thought was a flu for 4 months. I went to an ER and they kept me for hrs and found nothing wrong. Then it was a full yr seeing this dr or that dr and finally a dr with enough smarts checked my ANA tiler and it was +. I went to see a rheum and he said "You may have lupus"
I never went back to him because I didn't want to believe it.

I then spent the next 14 yrs changing my life with diet and exercise. I went from a size 14 to a 3 and worked out 6 days a week. I was in the best shape of my life. I would have "flares" every 3 months that lasted a day or so but nothing that stopped me from living.
Then two yrs ago exactly, I got odd symtpoms of joint cracking, joint pain, horrible vertigo, depression,fatigue everyday, hair loss etc and went back to the dr.
Just to mention, the entire 16 yrs I've had a + ANA also

My GP urged me to get back to the Rheum and he again dx me with Lupus from my ANA, symptoms and a elevated sed rate. But it just didn't sit right with me so I researched more and read about lyme. Got tested at igenex and found an LLMD in NY (I'm in canada). My blot showed many lyme bands and the LLMD dx with lyme.
My rheum and my LLMD worked together to treat me with abx. Though my rheum did not believe it was lyme, he listened anyway.
This is where i stand today. I still have some symtpoms but I am functional again.

Was I infected YEARS ago with lyme, went undiagnosed and it effected me like a lupus? Perhaps, but I will prob never really know.
Posted 1/15/2009 8:20 PM (GMT 0)
thanks very much for letting me know, peacesoul! dorit
Posted 1/15/2009 9:55 PM (GMT 0)

Hi abanana07.  The Doxy dose you were on was in the treatment range for Lyme.  Are you sure the Cefuroxime dose was only 100 mg twice daily?  I believe the recommended dose for Lyme is 1000 mg twice daily. 

I highly recommend seeing a Lyme knowledgeable doctor for an evaluation.  If the infection is still present, which sounds possible, the sooner you get properly treated the better.  It sounds like you started treatment early in the infection, which is good.  Early infections are the easiest to cure.

If you need a doctor recommendaiton for your area, you can email me at [email protected]

In my opinion, it is important to learn as much as possible.  I recommend readind Dr. Burrascano's Lyme Treatment Guidelines at http://www.ilads.org/files/burrascano_0905.pdf  I also recommned the follwing books:  "The Lyme Disease Solution" by Kenneth B. Singleton, "Everything You Need To Know about Lyme Disease" by Karen Vanderhoof-Forschner, and "Healing Lyme:  Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections" by Stephen Harrod Buhner.

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