I am new to this board and would like to say HI. I have gotten so much information from reading old posts and I'm trying to absorb it all.
I was diagnosed with neuro lyme a couple of months ago after 5 or so years of many weird symptoms and a few diagnoses of MS. (even though I did not meet any of the MS criteria) I started abx treatment and have been on it since October- 400mg doxy and 200mg diflucan daily.
My neurological symptoms have not lessened and if anything they are getting worse. (very stiff knees and ankles, can't feel the bottom of my feet but top are 'prickly', skin on stomach very sensitive-burning feel, joints seem to ache in the cold weater, 'crawly' around my legs, etc.)
I's getting harder and harder everyday to walk and stairs take me forever to climb. I have a young son and it's nearly impossible for me to get down on the floor with him.
The only improvement I have seen in the last 2 months is that I am finally sleeping though the night and I seem to be thinking a little more clearly. I don't believe I've had any herxing- maybe a few weird stabbing pains in various parts of my body but that's about it.
I am concerned that the treatment is not doing much for me and that it may be MS afterall. If I don't have these terrible herxes that other people have had does it mean that it's not lyme?
Is it normal to feel worse before feeling better? I know I have a long road ahead of me, but I am starting to get a little discouraged and need some advice.
If anyone has gone through similar things and could shed some light I would really appreciate it.
Thank so much! Posts: 21 | From Connecticut | Registered: Nov 2005
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posted
Not everyone has these big herxes. My theory is that bacteriostatic drugs like doxy do not cause much herxing, didn't in me anyway. Someone else will probably come along and say the opposite!
It is a little early to decide it isn't working, since you have had this so long. At some point, there could be a question about whether you would need to add another drug to this combo, like biaxin or something else that works intracellularly. Have you had any discussion with your doc about a treatment plan? Have you been tested for other tickborne germs you might have acquired along with the lyme?
Some people only use diflucan in a pulsed fashion, not every day. It can be hard on the liver. Might consider restricting your diet, cut back on sugar and carbs, add probiotics and yogurt in correct timing with drugs. Then you would make the yeast issue less prominent and less needy of diflucan constantly.
Something else to read is the newby links top of page. Just pick a few and work your way thru them gradually, as needed.
Posts: 8430 | From Not available | Registered: Oct 2000
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"Is it normal to feel worse before feeling better?"
...actually describes what a herx is. It's a worsening of symptoms or new symptoms.
I've had the prickly feeling from Doxy before. A bunch of us have. I don't know if that is really a symptom but more a side effect. All the other things sound like herx to me.
I just started bactrim along with my minocycline and I have jaw pain. I've never had jaw pain before. Guess what? You got it. It's a herxheimer-like reaction to the spirochetes dying and releasing toxins in to my system.
Hope this helps,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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posted
Thank you so much for the replies. I'm trying to make sense of all this and I appreciate your insights.
Lou: I actually have an appointment with my LLMD next week and will discuss adding another med to the mix- guess I'm just a little inpatient and would like to see some results. I have been tested for the co-infections which were negative but he's going to check for babs again because from my symptoms he thinks I could still have it but not showing positive on blood test. (something about antibodies?)
I hadn't had a yeast problem but my doc prescribed the diflucan in conjunction with the doxy as treatment for the lyme. Guess it's a new combo that is being tested out?
Would I know if I was having any liver problems or is a blood test necessary? Now I'm a little concerned..
I appreciate your help and will check out the newby links. It's all a bit overwhelming but I will take in a little at a time.
Corgilla: I'm glad to hear that someone else has the wierd prickly skin thing. It's really annoying and I thought I was just imagining it. I hope it will go away with my continued use of antibiotics. I had my prickliness a few months before I started the doxy but now it's much worse. My LLMD said that it's a neurological symptom. Maybe worsening prickliness could be considered a herx? Sure hope so.
Those darn little critters have done a lot of damage to my nervous system. Hope it's not too late....
Posts: 21 | From Connecticut | Registered: Nov 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Yes! Worsening anything can be a herx symptom. Doxycycline was my first drug, after at least 11 years of untreated infection. I was on it for five months, and I only felt worse. It wasn't until I was switched to Omnicef that I finally began to see some improvement.
Now, I don't know for sure that nothing happened while on the doxy. I could have been killing so many bacteria that my body just couldn't clear them. But if I had to do it again, I would have switched sooner, maybe at three months.
Still a long time to feel bad. But this infection can take a long time to treat. Especially if you have neurological issues, which I have, and you have. I did, and still sometimes do, have various neuropathies. Mostly they have improved, but sometimes they come back for periods. So far, never as bad as at the worst.
posted
You need to get your blood chemistries checked on a regular basis. My llnp has been checking mine once a month, and after only two months on abx, my liver enzymes were elevated and I had to stop taking them for a while.
It's a drag to have to feel worse before feeling better, but unfortunately that can be a indication that the abx are working.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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