posted
My history.. I was bit on 5/23, started having symptoms about 10 days later (muscle pains, fatigue, stiff neck, headache, low grade fever). Finally went to the dr when I saw a round red circle on my arm yesterday (about 3 1/2 weeks after bite). (I'm 40 years old and only medical issue is hypothyroid).
Tested positive for Lyme from the bloodwork.
PCP put me on 100 mg doxycycline twice a day for 21 days.
What else should I be doing? Should I wait to see how I feel after the 3 weeks on the antibiotics before doing anything else? Is there anything else I should take (supplements), eat or do? Do I need to see a LLMD yet?
Thanks for any feedback. I'm just scared after all there is to read about Lyme.
Posts: 9 | From Massachusetts | Registered: Jun 2012
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
No. You shouldn't wait to see how you feel. The abx dose you were given is not strong enough and you haven't been prescribed a long enough script.
It should be 200mg twice daily and I would want to take for at least 6-8 weeks. Maybe even more. Depends on if you still have symptoms.
Seeing an LLMD now may save you a lot of problems in the future.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Take PHOTOS of that rash before it fades. You might need these photos for some time to come. Keep them.
1) Put a clean coin or ruler beside it for scale. Be sure the lighting is good and as true to life as possible.
2) Find something today's date to have in the photo or otherwise be sure your camera can stamp / verify the date.
3) Get your face in at least one photo with the rash in that same frame, if possible. This will prove it is YOUR rash. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The current treatment is far too low and you need more than just doxy, alone. Doxy will not address the cyst form of lyme -or some other infections that often go with lyme.
You need to consult an ILADS "educated" lyme literate doctor. So sorry for all that you are about to learn - but this information can save you from a life of pain and misery.
One author says that minimum SEVEN MONTHS treatment is needed.
Most LLMD say you need to treat for 2 solid months past being symptom free.
Treatment is detailed here, too. See BURRASCANO's link first.
(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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I would hope your doctor gave you this key advice:
PROBIOTICS must be taken, but timed away from any Rx, supplements and food.
A no-sugar, no white flours, diet is also key to help prevent system fungal infections that can occur from antibiotics.
Olive Leaf Extract or Allicin capsules can also help to prevent fungal infections. Candida is the most common.
AVOID THE SUN - when on doxy, even cover up in the car. Some need gloves to drive.
Doxy can cause severe sunburn - even weeks after stopping.
Minocycline could be used instead, however, that can create a bit more dizziness and nausea. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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200mg doxy twice a day .. for at least 6 wks .. more if you are not well by then.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Glad to see that you have posted in "Seeking Doctor" forum and you have at least one reply so far.
You a very lucky that, up to now you been healthy and that you are addressing this right away. You stand a far better chance at a good strong long remission that way - as long as you can get care in line with ILADS' recommendations.
Good luck. Take care. Breathe. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Call your doctor's office and just ask the person who handles the paperwork to send you a hard copy of that lyme test.
They sometimes disappear so you need to get your own copy ASAP. If you feel the need to explain to the clerk, just say, "just a good practice to keep all my tests together in my own file, too."
You may have to sign for it.
Try not to draw the doctor's attention to your request, although she/he may have to sign off on it.
If you request the copy before you go back and ask for a more comprehensive treatment, you are likely to have a better chance of getting it.
Do NOT tell them (or anyone in any regular doctor's office) who the LLMD will be. After you read the articles in the links above, you'll understand why I say that.
This will all be especially clear after you watch the documentary, "Under Our Skin." -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
It's so frustrating to see so many doctors under-prescribe and under-treat!!! This is affecting so many lives.
From the research I have done, at a minimum, you should be on 200mg twice per day. And you should stay on 6-8 weeks AFTER EVERY LAST SYMPTOM IS GONE.
Also, you should take a cyst buster so the meds can penetrate when the spirochette goes into this protective form. A natural cyst buster is grapefruit seed extract.
Also, to cover bases for the common co-infections of Bartonella and Babesia, I would take Una de Gato and Artemisinin. Artemisinin you need to pulse...there are several ways to do this.... something like 4 days on, 3 days off. Or one week on, one week off. This is done so babesia will not become resistent to it.
Babesia and Bartonella are just as complicated as Lyme and are just as dangerous.
Stay on Lymenet and keep reading and researching for yourself. There are many bright, caring people here to help offer suggestions. So many of us say "I wish I knew then what I know now". So many of us would be in much better shape had we known that you need to treat aggressively and long-term in the beginning. Catching it early and treating it properly gives you the best chance at remission.
Good luck.
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Thanks for all the advice. I called my PCP and he said they have never given an rx for 200mg of doxy because it's not FDA. He said he's treated many lyme pts and it should be fine in a few weeks. Then I told him I think I have some palsy in my face and he said he would do some research on steriods. Even in my brief research, I know that steriods are a NO NO.
So I have a call in for an appt with 2 drs in my area (one ILADS, one not). I will just continue with the 100 doxy twice a day and hope I can get in someplace else soon.
Posts: 9 | From Massachusetts | Registered: Jun 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
The FDA has nothing to do with the dose you were prescribed.
Be sure to get a copy of that test result.
Posts: 2888 | From USA | Registered: Mar 2004
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