posted
Hi. I'm new here. Diagnosed with neurological lyme on a western blot test. I've had symptoms - headaches, facial neuralgia, etc. for about 8 months but really got worse this past month. I'm allergic to penecillin and cephalasporins so my doc gave me 100mg of doxy to take twice a day for a month. Just started yesterday. Does this treatment sound right? It sounds too short to me. I am also looking for a good lyme doc in CT if anyone knows one. Please PM me some names. Any help you can give me is appreciated. Thanks so much!
Posts: 581 | From CT | Registered: May 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Sorry. That is not enough doxy to do anything except maybe mask the symptoms.
Depending on your weight, a minimum of 300-400mg of doxy needs to be prescribed.
Oh, welcome to the board!
You can post in Seeking Doctors with your state and city.
Someone can help direct you to a Lyme Literate Medical Doctor.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I forgot to add that 30 days is not enough treatment for Lyme.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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WildCondor
Unregistered
posted
That is the wrong treatment dose. It has to be 400 mg per day, plus you need to be tested and treated for co-infections. 30 days is also not long enough!
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Not big enough dose of doxi --400 to 600mg aday and Not long enough-- takes Many months --
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
agree with the others. please find a doc who knows what they're doing when it comes to lyme. (post in 'seeking a doctor' and you'll get some good recommendations.)
posted
welcome to the board; so glad you found us.
i agree with everyone above! when you post in seeking dr. section, please show the largest 4-6 cities with the CLOSEST ONES listed FIRST at top of your post plus the info you have above.
WELCOME, would you like a FREE copy of my newbie package of 120 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
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posted
I agree 200 is not enough. I am seeing a well known llmd and was taken off minocin 200 which I was improving,getting my life back, and put me on 200 of doryx. I am back sliding very bad and depressed. My llmd told me that there would be no difference clearly there is.
Posts: 433 | From new york | Registered: Dec 2004
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posted
Thanks everyone. My family doc is so dumb whe it comes to this. I have a lot of doxy so I think I'll put myself on 400mg a day until I can get t a good doc. I weigh 114lb so that hopefully will be enough. I posted in the finding a doc section. thanks again.
JULIE
Posts: 581 | From CT | Registered: May 2008
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posted
ditto ditto ditto! good move until you can get in with someone else and test for co's too
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
You may also want to consider STRONGLY not starting with the high dose. Yes, you need it but work up to it. Take your first dose. The next day, take a little more...
Otherwise, you may find yourself feeling quite ill (Herx).
posted
I think it must have been late last summer/early fall. I never saw the tick or rash but my grandmother died last August and for a month or so after that I was constantly sick and dragging. I just thought it was due to her death and nothing else. Then in Jan. started getting headaches every so often and by April was getting them a lot with facial numbness and pain. So, now I've got cranial and facial nerve pain and some numbness. My family doc confirmed lyme with a western blot test. There are a few lyme docs in my area and I will be seeing one within the next month. Their wait lists are so long! In the meantime, I will stick witht he doxy, I guess.
Posts: 581 | From CT | Registered: May 2008
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posted
I am seeing a LLMD and he put me on 200mg of Doxy. Most of you know the doc I am seeing and know he is very well respected.
Everybody's bodies are different and i know he is starting me at that level because when I herx my heart goes NUTSO and I get major tachycardia symptoms.
When I was on the MP I couldnt reach 100mg of mino because of this, so to be cautious he has put me on 200mg of doxy to start on.
Weather or not this will even touch my infection...I dont know? I hope so, because I have just about had it with this illness.
But anyway, I just wanted to say that my doc (llmd) also put me on 200mg of doxy. But to be even more cautious I have started on 100mg than I will work myself up to 200mg and than 300mg
Good Luck!!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
Some people post "oh that dosage won't even touch the lyme, you have to be on xxx mg". Some of the LLMD's I've spoken to (highly rated LLMD's) basically say that if it's causing a herx, then it's working, even a lower dose.
Posts: 655 | From USA | Registered: Sep 2007
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
opus: It really sounds like your doc is following SEVERELY outdated IDSA guidelines for Lyme disease treatment. If you've had symptoms for the last 8 MONTHS, you'll likely need to be on abx for ATLEAST as long, probably longer. As this type of treatment falls outside current IDSA recommends (which says very little... & a lot), you WILL need to sek out a Lyme-literate doc
Fortunately there are more in your general area than many have to choose from in other parts of N.America. As noted above, post in Seeking Doctor sectioon here. You might also check with the referral section of the ILADS website (They write you back)
You may luck out & only need a much stronger dosing for maybe 90 days, but something tells me you'll be on atleast 2 different abx protocols before you really begin to truely regain your health.
You must Immediately start to educate yourself about the disease & the "2 standards of health care" involved here. Then find an MD or ND who is willing to follow ILADS guidelines.
I don't know *ONE* person with "late-stage Lyme disease" who's gotten better after being treated by a doc following the IDSA recommends... and has STAYED healthy. Not 1.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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bettyg
Unregistered
posted
boy, this post is 1 yr. old ...
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posted
My wife has been sick at least for four years and has severe neurological symptoms.
She is seen by a good LLMD and was put at 200 mg a day to start. She will go back after three months on doxy for adjustment.
So I think, unless you are sure what the treatment plan is, don't change the doseage your own.
Posts: 822 | From midwest | Registered: Apr 2009
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