posted
I am interested in a good link describing recovery from acute lyme. I am on Doxy (100mg 2x) adn just ending week 2 which started with the worse headache of my life. I figure this is the Herx reaction everybody talks about. What kind of recovery can I expect? Should I start excercising again during breaks in fatigue? Do I wait until off antibiotics to excercise? I am officially going to go back to work next week but am sure I will have to take it slow. I know symptoms differ for everybody - I had one woman tell me she never took off work when she had lyme (right, she obviously did not have the killer headache and body aches and fatigue). Just saying I am tired is a misnomer - it is beyond exhausting to go get the mail. Folding laundry requires an hour of resting! ALl web sites say acute lyme generally clears up with month of doxy - but how long of a recovery can I expect??? thanks for info...
-------------------- JLT Posts: 25 | From Columbus, OH | Registered: Nov 2005
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
I am NOT a Doctor, But....Two weeks of Doxy at that dose...not what the Lyme Doc's recommend..they say 300mg to 600mg six to 8 weeks.
Don't expect recovery after that dose...it MAY happen...but don't expect it.
Read Dr Burrascano's guidelines...available on the landing page of Lymenet.
The American Lyme Disease Foundation....is NOT connected to any group of Lyme experts. (So I say...read with caution.)
Most acute cases....caught early...will be fully treated with the RIGHT amount and length of antibiotics.
Good Luck,
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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posted
I would like to add a second question - is there anyway to tell if it is acute vs. chronic?
thanks
-------------------- JLT Posts: 25 | From Columbus, OH | Registered: Nov 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
You MAY recover on that dose and duration although you don't sound like you're doing too good so far, but you probably have what I would consider an unacceptably high risk of not recovering completely, or the disease becoming chronic at that rate.
My advise is same as Trouts - read Dr B's guidelines.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Acute vs. Chronic-
When were you infected and when did you start treatment after that (that day/following week/month or year)?
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
I think I was infected Oct 5-6 2005. Symptoms Began Oct 24. Doxy 100 mg started Oct 31. Symptoms today are Headache that waxes and wanes throughout day, lack of concentration, fatigue. I am supposed to be on Doxy for 2 more weeks+3 days.
-------------------- JLT Posts: 25 | From Columbus, OH | Registered: Nov 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Please, please listen to the above advice and read Dr. B.'s guidelines......and see an llmd. I doubt there is any other disease that requires the patient to learn so much about treatment and diagnosis. This disease can be so isolating!
My son removed a tick This past January and he was immediately treated for six weeks.
I wasn't treated after removing my tick in February. Stupid......stupid me!
We both had Igenex testing in July and saw an llmd in August. Our doctor has been aggressively treating the lyme & coinfections and we drive 100 miles to see our llmd each month.
I actually am doing better than my son...... he is having a tougher time with his symptom mix. It could be babesiosis so he is now on 3 meds for that.
I expect we both will be on abx for many - many months.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Our doctor is in Baltimore and I think I sent you an email yesterday if you posted on the Seeking Doctor page.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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The window between acute and chronic is small. It is also much too complex to try and determine. It involves variables like the bacterial strain, coinfections, your system, stress level, etc.
The advice given is good. Find a llmd. I would seek higher doses for a longer duration.
Just to give you a reference point: My first significant symptoms appeared Feb. 18, 2004. I started treatment March 26, 2004. I'm still in treatment.
Posts: 153 | From Watertown, CT USA | Registered: Feb 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Ecowoman. Love your name! Now is the time to strike, as others suggest. 100 mg x2 a day won't do it. Find an LLMD or you'll soon tire of arguing with your non-LLMD doctor.
I was bitten several years ago, had an EM rash, ignored it (didn't think there was Lyme in California), and a year later got the nonstop killer headaches you describe. Nothing could fix them and it took about four doctors to get to the bottom of it (till a smart radiologist finally looked at my brain MRI and said, "Hmmm, lesions sure look a lot like Lyme..", whereupon the little light went on in my aching head.)
And yeah, I've never taken off work, either, though it's not always pretty. I take Relpax on bad head days and Provigil to stay awake.
You do NOT want your head to always feel like this, so go to a specialist.
If you had breast cancer, I know you wouldn't go see a podiatrist for it. That's how wide the gap is between a non-Lyme-literate doc and an LLMD. You might pay for it for a long time.
Read everything you can get your hands on, come here often and ask questions and get support! With luck and the recent time frame of your bite, your treatment could be short, but you want to make sure it's really thorough.
Best of luck and WELCOME!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I would not trust that the treatment you describe will be curative. My husband was bitten 27th June 04 with rash appearing a week later. Fatigue, limb pain, loss of appetite and flu-like symptoms began after a further week.
Treatment began 27th August 05 - 200mg Doxy once per day. Remains of rash disappeared within 5 days, appetite returned at day 7. Three scary herx episodes late in week 2 and early week 3 - strong rigours throughout body. Several new symptoms appeared late in week 3 - numb patch on forehead, tingling sensations over scalp, urinary delay, anxiety, emotional distress.
No further treatment since and health has deteriorated significantly - extreme limb pain, 24/7 headache, depression. At last with a doctor who admits that continuing active LD possible - so IV treatment starting next week.
If I were you I would demand that treatment be continued at an increased dosage, especially if you still have symptoms at the end of this course.
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I've come to the conclusion doxy is a very poor choice esp at the levels they tend to give, in lyme. Your killer headaches indicate CNS involvement already and doxy at those levels won't get into the CNS in sufficient quantities. It is also only bacteriostatic (inhibit) not bactericidal. You'd need to be on doxy for 6 months imo.
I like amoxicillin better, it makes more sense to me and even then probably a minimum of 6 weeks. Yes I've heard it creates more cyst form or some such but nobody has seen this in action in vivo. At least it kills the lyme outright. And you can take high doses. So maybe 3 grams a day for 3 months would be wise.
That sounds crazy coming from me who doens't like abx but I recently have been taking amoxy for the first time ever, for tooth issues, and it has very nicely impacted the lyme without bad herx side effects at all tho the fatigue from candida issues is marked and I doubt i can do endless longterm amoxy. And some friends have confessed that in late stage lyme it was a couple years of amoxy high dose that got them better.
Its also a relatively gentle antibiotic--ie you can take high doses without toxicity, AND it certainly doesn't cause me nausea like doxy.
So for a slow dividing CNS bacterium (12-24 hours) why prescribe moderately low doses of doxycycline?
Do they ever do that for syphilis? Nope.
Posts: 2276 | From united states | Registered: Jun 2004
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Ecowoman
Low dose of doxi is not very effective-- When I started treatment I was on Low dose also-5 months
I upped dose to 600mg a day-Much better--
--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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WildCondor
Unregistered
posted
Hi Ecowoman...good name, I like it!
The advice you have been given above is good! You need to be on 400-600 mg per day of Doxycycline and for atleast 8 weeks. Are you being treated for a frssh tick bite, or have you developed symptoms and did not get treatment when you were first bitten? It depends how long you have been sick as to whow long to treat. Doxycycline is usually the first choice drug because it kills both Lyme disease and Ehrlichia. Amoxicillin only works on Lyme, and thats what the doctos have you on Doxycycline. You will do fine on it as long as you double your current dose and get tested for co-infections. The headaches could indicate Babesia, which requires anti-malarials, plus different antibiotics to kill it. That treatment lasts from 4-9 months.
Please make sure you get yourself to a Lyme literate doctor. Let me know if you need help, i do have some names for you from California. Read up more on Lyme and co-infections too. The treatment guidelines are essential.
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