posted
Where I live I am unable to get infectious disease doctors to help me.
My internist is willing to prescribe doxycycline for a year- but he says that it will probably help as an anti-inflammatory rather than treatment.
I have lost feeling on my left side, have weakness, confusion, and other neurological symptoms.
Is there any evidence that any combo of oral antibiotics has helped anyone with neurological symptoms?
I have never been able to get a long course of any antibiotic prescribed to me. Doctors in St. Louis keep telling me I should have gotten better after a short course of doxy.
Obviously this is ridiculous, but I'm scared. I have gotten worse and worse in the last several years.
[ 24. February 2007, 02:08 AM: Message edited by: she7 ]
Posts: 35 | From st. Louis | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear She7,
Have you started the doxy? You may be herxing and that is why you are feeling worse.
I had confusion, difficulty speaking, word recall problems, no short term memory, difficulty with swallowing
balance, issues, etc. My first treatment was doxy.
It took about 4 weeks, but very gradually I did notice an improvement with my neuro symptoms.
That was on oral doxy, 300 mg a day as I only weigh 115 lbs.
You need to find a LLMD as soon as possible.
Hoping you are feeling better soon.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
HAVENT STARTED DOXY AGAIN YET. ALREADY FREAKED OUT OVER THE BIZARRO HERX FROM A Z-PACK.
I THINK I SHOULD TAKE DOUBLE THE AMOUNT PRESCRIBED SINCE MYINTERNIST ISN'T SURE HOW TO TREAT ME, BUT A LOT OF PEOPLE HERE SAY THAT A HIGHER DOSE IS NECESSARY.
SO CONFUSED.
Posts: 35 | From st. Louis | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear She7,
I have learned the hard way to start slow with all meds.
I am supposed to be on 300mg of doxy again daily beginning yesterday.
I only took one and yes the big herx truck is running over me!!!
I usually take one for two or three days, then two and so on and so forth.
Let's me handle my herx a little bit.
I know from this board that it does take at least 300mg of doxy to crosss the blood brain barrier.
You may want to start slow. Watch your diet. Get some probiotics as yeast is a problem with most antibiotics.
Drink lots of water. I take my doxy with meals with 8oz of water to minimize stomach upset. Also don't lay down for at least an hour after taking it.
Extra precautions for sun sensitivity. I once drove to Texas from my house. Sun was on my hand about the whole way as I was driving.
Hand was so sunburned it blistered.
Initially, I was prescribed 200mg of doxy a day. I did feel mimimally better, but I felt like it was just masking my symptoms.
I had a two week herx from 200mg of doxy.
I should add that I have two young children and have to be able to at least semi-function.
I see Lymetoo pm'd you. She is wonderful and her advice is always solid based on years of experience.
Maybe I am lucky that I have had some relief via oral doxy for neuro symptoms.
I know everybody's system is different. Doxy helped me get some quality back to my life.
Hang in there. You're in for a bumpy ride. Know that you can always come here for support and answers from people who know what you are going through.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I took doxy for six months at the dose the doctor prescribed--200mg a day. For my weight (145), I should have theoretically been taking twice that.
However, I spent the entire time in herx hell, no good days.
When I gave up, I felt better than I did before I started but had major symptoms unresolved.
That doctor was an old guy with lots of experience, but no flexibility to indivudual differences.
I am very sensitive to medicine. The hard part is knowing that my herxing may be worse than the benefits I'm getting.
If I were you, I'd start out doing what the doctor says. See how it goes. If the herx isn't intolerable, maybe you can get your duck to increase the dosage.
Posts: 353 | From Florida boonies | Registered: Nov 2005
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posted
Ramping up can be a good idea for newbies to lyme treatment.
Herxing is sometimes confused with getting worse because of the disease processes. Not always easy to tell which it is, except in retrospect.
Your reaction to z-pack is a sign that it will be a good drug to combine with doxy. Usually it takes two drugs that work in different ways to be effective. A dentist prescribed a z pack for me before I was diagnosed with lyme and it sure amazed me at what happened! This was part of deducing later what was going on, part of the diagnosis. Big reaction to antibiotic = herx?
A year of low dose doxy might not be the optimum treatment. Good that you have something to start on, but you need to find someone who is better informed about the disease, and who will consider coinfections too.
Posts: 8430 | From Not available | Registered: Oct 2000
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
I think you're right with that Lou. It's a weird thing. The more I read about Lyme/Masters disease when I started learning about it, the more I heard about Herxes and how we were to avoid them. I was scared for my hubby and what he was going to have to go through...and still does.
But he is getting better and better.
It's really hard to know if it is a true herx sometimes, or just as general die off reaction. Of course, that is easy for me to say, cause I'm not the one who is going through it. I just know it's HARD for him.
Best wishes to all.
Posts: 1366 | From Southeast | Registered: Sep 2005
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