posted
Okay, I know that sounds weird, but I also know that you guys can relate to this. I have taken 6 months of minocycline & doxycycline. 2 months now on IV rocephin and last week started Ketek and still no bad herx. Am I just so used to feeling ****ty that I have overcome it and can tolerate anything or am I just not herxing and what does that mean? My Lyme tests are positive and I have had my legs stop working now for 10 years. Wheelchair for 5. Do I indeed have Lyme? Why haven't I Herxed???? Will be seeing my LLMD in one month- but in the meantime I am very confused. Any great pearls of wisdom out there? I'd be much obliged.
Posts: 85 | From Eugene | Registered: Jun 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi earth
I usually get herx on first day of new meds--Perty strong and within hours of taking meds--- Lasts 1 day then nothing much after that--
Doc told me this is somewhat more common in males--
I may not get herx because I took low dose of doxi for several months before I started higher doses and different meds-- --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi Earth,
First, I am sorry that you have suffered for so long.
Do I understand that you have been treated for under a yr?
We have had lyme for 5yrs. My daughter is on 2nd round of IV, this time we will go 4mos or longer. The dr. plans to rotate several abx.
Where I am going with this is that it can take quite a while to see improvement if you have had lyme for a long time. Dr. B's guidelines say 18mos-3yrs abx for patients with late stage.
May God grant us patience. I am sure others will be along with wisdom.
Best Wishes, Char
Posts: 1230 | From US | Registered: Nov 2005
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Jim Bayliss
Unregistered
posted
Hi Earthsong15: Very sorry to hear how deep it has affected you. Have you done any herbs yet? Many people NEVER get cured with antibiotics, many relapse. Different things work for different people from everything I have read so far. I am feeling MUCH better now after just taking minimal dosages of herbs for a little over a week. I got pretty sick at first with one, but I feel better now and much of my arthritic symptoms are disappearing. I got started trying to cure this thing, after I met up with a gal in Iowa, who has had it for 21 years. I guess she has been on this network for a while, as she gave me the email address for it. Her name is Victoria. She too was bedridden, in and out of hosptials, misdiagnosed for almost 20 years. But after about 14 months of LLMD care, she is up and running, jumping, skipping and SMILING. She said she STILL has bad days and good days. But the bad days are less and less and milder and the good days are much better and more frequent. SHE really gave me hope. Take care. Check into the herbs along with your antibiotics. Jim. ###
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I too am in a similar situation as you are. I have been on abx for over 2 months and have not seen anything I would consider a 'herx'- just that my symptoms are getting worse. I've had my lyme-related problems for over 5 years including severe neuropathy and spacticity in all major joints. I've questioned the lyme diagnosis but I trust my LLMD will do whatever he can to make me feel better.
From what I've read here, it seems that the longer you have been ill the longer it will take to see any noticible improvement. Also, some people don't have real bad herxes and others show differently (like new symptoms popping up they've never had before).
I think this is going to be a very long road for both of us. Hang in there, try to be patient and keep in touch with the great folks on this board. They are very informative and supportive because they know what you are going through.
Posts: 21 | From Connecticut | Registered: Nov 2005
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Jim- Yes I take many herbs. I actually am an herbalist and own and run an herbal manufac turing business, so I take many tinctures.
So now for more questions folks. Today my liver function test came up elevated. Is it the ketek? Or could it be the 2 shots of tequila that I had Sat night? I don't usually drink. Can just a small bit of alcohol once boost up the levels or is it the ketek ? Should I stop in the meantime- my doc hasn't gotten back to me yet and it could be quite a few days til he calls since he works in 4 cities. I am not quite sure what to do!!!!!
Posts: 85 | From Eugene | Registered: Jun 2005
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posted
I don't know much about Ketex but I highly doubt a little tequila (or "to kill ya" as I call it - heehee) would elevate your liver function. I would think that would be a result of something more long term and cumulative. However, taken together with the use of other things, it could have sent it over the edge?!?!?!
Posts: 331 | From virginia | Registered: Nov 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
I have heard Ketek is hard on liver.
Newbie site has links to sites to research drug side effects.
Seems like its one thing after another with this evil bug.
I went for almost a year without a herx. I had taken doxy, ceftin and biaxin at different times and nothing. I switched to tetracycline and that's when the herxing started for me.
I never had monthly flares. I just was sick all the time. It is believed that I have been infected multiple times and the different strains along with my 6 coinfections kept me from seeing any changes.
Once I was treated for Babesia, I now have 2 monthly flares. This pretty much supports the idea of multiple strains.
Have you been treated for coinfections? I only tested equivocal for Babs once out of 3 tests and treating it made me a whole lot better than I was. So, even if you tested negative, you still might have it.
Ketek actually made me feel better and gave me some energy back. A lot of people have had that result. Unfortunately, I started having heart issues and had to stop.
What liver enzymes are up? My amylase has risen some and I had a rise in billirubins for a while. Neither of these problems required any changes in my treatment. I'd wait to see what the LLMD says.
Hope this helps,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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I don't usually drink. Can just a small bit of alcohol once boost up the levels or is it the ketek ? Should I stop in the meantime- my doc hasn't gotten back to me yet and it could be quite a few days til he calls since he works in 4 cities.![[woohoo]](graemlins/woohoo.gif)
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