posted
I have Lyme and was prescribed 100mg doxy twice daily for 3 weeks. I started the medication the day after pulling off the tick, but was in very serious pain for a few days before that(went to the emergency room only to be sent home with muscle relaxers...)
I have been taking the antibiotics for 7 days now and I'm still suffering with terrible neck pain. So bad I can not get out of bed. Overall still feeling very sluggish and tired.
I am wondering if I should be taking a higher dose of antibiotic for a longer period of time. My father keeps saying that I just need to give the meds more time to start making me feel better, but I can't take feeling like is anymore. I went from being able to run 30 miles a week to not being able to get out of bed the next week. I'm nervous of being under treated only to have the disease get worse in the future because it was not properly taken care of now.
Is the prescribed dose of 100mg 2/day for 3 weeks enough or should I be taking more for longer?? Btw I'm female 22, 5'8, 150lbs.
Any input would be greatly appreciated
-T
Posts: 17 | From NJ | Registered: Jun 2012
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Check out www.ilads.org for treatment guidelines. Dr. B's diagnostic and treatment guidelines have a thorough section on new bites.
He recommends there 200 mg doxy TWICE a day, so you're taking HALF the dose he recommends. He also recommends taking it for at least 4 weeks PAST the last symptom. That means you're not even counting the four weeks until you're feeling better. You may be on it for several months.
You are correct that you want to treat this properly NOW so it does not become a chronic issue.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
If it were ME, I'd definitely want 200mg twice a day for 6 wks... keeping in mind the rule about continuing 4- 8 wks after the last symptom is gone.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
The lyme docs ask tons of questions and base treatment upon your answers and your medical history. Some prescribe 100 mg 2x a day and others prescribe 200mg 2x a day.
Most tick bites come with co infections, which require more meds other than just doxy.
Is your doc an LLMD (lyme literate medical doctor)? If not, go to www.lymediseaseassociation.org and they will email you some names. You want one who is ILADs (International Lyme and Associated Disease Society) educated (cutting edge when it comes to lyme). IMO, the other docs are just a waste of time and money.
And no, 3 weeks is not enough. You should also start on some probiotics.
What kind of pain were you in prior to getting bit?
You may want to google Dr. Joseph Burrascano's 16th protocol on lyme. It's also in the meds section of this blog (first line). It is filled with info on what meds you should be on, diet etc.
I had serious neck pain too when I got bit the last time. It turned out to be babesia.
Set up an apt with an ILADs LLMD soon. Get on their cancellation list. I was able to be seen 3 days after calling due to a cancellation.
You may also want to get the book, "Cure Unknown". It explains the whole lyme controversy really well. Great read.
Also, when you have a chance, google Under Our Skin, hulu. Hulu has a free download of this incredible documentary.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
get to a LLMD ASAP, this is what happened to me, 30 days of 200 mg doxy a day did not wipe it out and came back even worse, you need to be on 200 mg doxy twice a day. Go ahead and Order some for yourself NOW, u may also want to take some flagyl too. PM me for a safe source to order !!
Posts: 532 | From Texas | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Prior to finding the tick I had really bad back and neck pain. Dizziness, tired, headache, overall heavy feeling in my head. I could not sit up or stand for more then a couple minutes without having to lie down. Since I started the antibiotic my back pain has gone away, but the pain in my neck is still unbearable at times.
I was not aware co-infections. A llmd will test for them?
Posts: 17 | From NJ | Registered: Jun 2012
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posted
I never heard of this LLMD before, but after reading your responses I'm seeing that this is the most important part of treatment.
Thank you so much for all your quick replys and helpful information.
Posts: 17 | From NJ | Registered: Jun 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Jolteon, it sounds like you may have been bit prior to the tick you actually found. I'm no doc, but it sounds like you have babs (babesia) too.
An LLMD will test for co infections for you and will ask you tons of questions to clinically determine what you have as well.
Hang in there Jolteon, you're not alone. Start calling LLMDS tomorrow. You can also go to Seeking section here on lymenet and post for finding an LLMD near you. I found mine at www.lymediseaseassociation.org
Remember, specialists who follow ILADS protocol are the very best.
Lymetoo, I know of one who does prescribe 100mg. My husband has kidney issues and is on 100mg because of it. Also, if a patient is small (low weight), they often prescribe a lower dose. They have to take into account other factors as well.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Cat girl is correct, same here for me,I was already infected and the new tick bite really put the icing on the cake, get an early start for yourself, right away insist on MTHFR testing, correct methylation, I'm glad I did that but was a bit later, will help the antibiotics ,etc work better.
Posts: 532 | From Texas | Registered: Oct 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Also, contact your state lyme support groups (see Support Groups on left side of page) and find out who the good lyme doctors are who are getting people well.
The doc is the key to getting rid of this disease. Can't emphasize that enough.
Get personal recommendations about the doc you are considering. Don't just go to the closest or cheapest one.
The good doctors generally have longs waits. So, be sure to get on their cancellation lists. Get on a few lists and see who calls you first with an appointment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Is there a way I can talk to my doctor and tell him I want to up my doxy to 200mg for 6 weeks? Maybe by showing him the ilads treatment guidelines?
This way I can up it sooner without having to wait for another doctor...
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Based on experience, you can tell the doc what you want, but most likely he won't give it to you.
He is following the guidelines set down by the IDSA (Infectious Diseases Society of America) when he gives you that dose.
You never went to med school and he doesn't want to look at what some other doctor (Burrascano) has to say. He has been brainwashed to believe that lyme doctors are the scum of the earth. In his continuing education classes, he has been taught that they are taking advantage of poor sick people who think they have lyme. They charge them huge amounts of money to give them dangerous treatment--long-term antibiotics at high doses.
So, it won't work.
Lyme is in the middle of a major medical controversy. The doctors are divided into 2 camps. You need to get over into the lyme-literate camp where they will treat you like Burrascano says.
Did you know that Burrascano was harrassed and hauled up on charges by the state medical board for his way of treating lyme disease? This is being done to many of the top notch lyme doctors who get people well and have become famous.
It is a war.
It all started after Burrascano testified before the U.S. Congress about the conflicts of interest in the IDSA regarding lyme disease. You can read about it in the Congressional Record, early 1990s.
A Boston TV station did a show on the controversy a few years ago. Here is Part 1 of the Boston Chronicle video on YouTube:
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