Im desperate, severe lyme, probably coinfections. LLMD only prescribed doxy, 50 mg. Then he switches to cefton after doxy stops working. I am so sick, almost in wheelchair. Having seizures, you name it, I have it. Neurolyme. Need advice. I am scared to start treatment, cause I've heard that you need two antibiotics at once to surprise the bacteria. Doxy is enough? I would love IV but I think it would kill me cause my case is so severe. Help!
Posted by Geneal (Member # 10375) on :
I started on 200mg of doxy and that wasn't enough.
Has to be 300-400mg to really address Lyme.
My LLMD started me off lower to avoid putting me in herx heck.
Allowed me about 6 weeks (of which I felt worse the entire time)
Then upped it to 300mg. I only weighed about 120lbs then.
Doxy is a good place to start.
I did doxy for 4 months prior to starting babesia treatment.
Hugs,
Geneal
Posted by catskillmamala (Member # 12536) on :
I think doxy is the right approach, but the dosage seems low. Maybe your llmd is starting you very low to see how you tolerate it?
Posted by Starfall1969 (Member # 17353) on :
I agree that that is a low dose--mine was low too, 200 mg a day.
It helped, but not enough. After a month he added Rifampin, and adding that did the trick (I also have Ehrlichia) till the little buggers migrated into my eyes.
See what happens by your next appt.
Posted by LindaS (Member # 20251) on :
My llmd advocates detoxing with chlorella and lots of water, using Pro DHA/Fish oil, (good for the neuro stuff) and Magnesium malate which helps these exhausted muscles, and using high quality probiotics including Saccromycies,and Acidophillus.
I herxed like crazy for a week when first on Doxi, 200 mg per day. After a month we combined with Flagyl as the Dr. identified more of the co-infections and parasite issues.
Now, at 5 months since diagnosis, I'll be starting Omnicef. Again, the choice of antibiotics depend on what co-infections are determined to be present.
Do you trust your Dr.s judgement and have you told them about the herxing?
Posted by WildCondor (Member # 434) on :
What is with that ridiculous low dose of Doxycycline? The treatment for Lyme with Doxy is 300-600 mg per day!
Posted by Tincup (Member # 5829) on :
Brandi...
Sorry to hear you are so frail and so ill right now.
Do know please, it can get better. I'm glad you have a diagnosis and a LLMD to help you and guide you.
Please note- Not everyone is the same and not everyone can handle high dose medications or combo's, especially at first.
Doses, therefore, will be different for different reasons.
I do NOT agree with anyone advising you or encouraging you to do something that is not what your own LLMD advises... or making you feel like you will not be treating properly if you follow your LLMD's advise and not theirs.
That is dangerous!
PERIOD!
If you are ALREADY having seizures... have multiple untreated infections... and complications like you've described... you should NOT increase your doses or start too quickly.
To do otherwise can be extremely dangerous to some people.
Remember, no one here knows you, your history, how long you've been infected, your exact problems, your tolerance to drugs, your current condition, your age, etc...
AND THEY ARE NOT DOCTORS!!!!
Listen to your doctor and if you have questions, run them past the doctor... not a bunch of yahoo's (lovable ones but still NOT doctors) on a website.
You said.. "I would love IV but I think it would kill me cause my case is so severe."
BINGO!!!!!
Orals can kill too. That is why your doses are made to be lower to start out with, to see how you tolerate them.
Please know that starting slow IS acceptable, even preferred in many cases... and that there is NO scientific literature proving that resistance is caused by starting with lower doses.
Or that you won't be cured starting with lower doses.
On the other hand...
Herxes from too much medication can and have KILLED people.
And too much meds have sent people to the hospital. NOT fun!
So please listen to your doctor and know he/she will adjust doses to tolerance as he/she sees fit.
OK?
Good luck!
Posted by Melanie Reber (Member # 3707) on :
Ditto to the above. (well, except for the lovable Yahoos part)
Hope you are feeling better soon Brandi.
Posted by Brandimc (Member # 22017) on :
I have babs, ehr. and Lyme. thanks for feedback.
Posted by kitteagirl (Member # 20629) on :
We think I've had Lyme's for 20 years. I just did doxy 200 mg/day for 6 weeks. Now I'm off it for 10 days, and then we are going to do the IgG and IgM Western Blots again. I did notice that after about 2 weeks on the doxy my severe knee pain got considerably better, but not gone. My severe fatigue is still with me though. I didn't have any bad side effects from the doxy though, although it sounds like I wasn't on any super high dose compared to some of you.
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