posted
Going to doctor on Thursday for first appointment for son since diagnosis. He is on 2 tablets a day but only 50 mg. He had some herxing at first when on 50. The herxing has leveled off but the headache continues to be bad and he is unable to attend school. Wish there was something for the headache pain at this point!
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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posted
My son is 16 and is 6 foot tall and weighs 123 pounds. Thought that might be helpful when asking about amount of med. We are seeing a Lyme doctor. Not too many of them in Michigan
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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posted
100mg a DAY?? GADS!! It will take a long time to get well on that....if ever! All the dr is doing is making the keets angry in my humble opinion.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Thanks I will question him on Thursday. It is so hard with not many doctor here specializing in Lyme and not many know about it. When my son is better I'm going to get involved in spreading the message around here in Michigan!
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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posted
I took 600mg doxy each day. I didn't herx badly though. I know that at a higher dose of doxy (I think above 400mg) you cross blood-brain barrier. That's something to consider.
-------------------- Be well, SAK Posts: 371 | From Up North | Registered: May 2005
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posted
Lymetoo, to your knowledge, what is the normal ml. of Doxy. that most LLDD start their Lyme patinets on, especially mature adults? Know you're not a doctor but I take much interest in your post. You seem very knowledgable and experienced with this disease. Any info. will be appreciated. Dalphia
Posts: 97 | From Tennessee | Registered: Nov 2005
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My first month of treatment I was on 200 mgs doxy. The following month I went up to 400 mgs of doxy which, you are right, is the amount to cross the Blood Brain Barrier.
I herxed pretty hard on the 200 mgs. Now the 400 mgs is not causing me to herx at all, I just feel like I am going absolutely insane from the psychological/head related side effects due to the crossing of the BBB.
I think my doseage is pretty standard for the LL that is treating me.
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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posted
P.S. I forgot to mention that I am 33 and tip the scales at 218. And yes, that's pounds. Weight gain courtesy of Lyme. AAAAA! LOL
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I started at 200mg doxy and im now down to 100mg because i was herxing so bad. Im still herxing now on the 100mg... I stopped for 2 days and things calmed down, but other things got worse. My llmd plans on slowly getting agressive.
i only weigh 100lbs, so that affects my dosage as well.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Most LLMD's prescribe 400 mg. Many go for more if the patient can handle it.
"Can't" ... at least you are herxing on that 100mg. You can go up as soon as your body can handle it. The sooner the better....but then again, don't overdo it. Always consult your LLMD.
concerned...Do you need the name of an LLMD in Michigan or do you have one?? Doesn't sound like you have one....?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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the headache could very likely be caused by the doxy, which too often is an effect of doxy!
its called intracranial hypertension; non-medical people often call it "head pressure." in infants and children, one visual sign of this are pulsating temples; you can see the temples going "in and out." as an adult, i experienced this increased head pressure as a result of only 100mg. of doxy.,AND i could feel the pulse in my temples.
if this is the case, then ask your son's doc, or PM nurses, and docs on this board, and ask how to mitigate against this, minimizing the head pressure. ask about spacing doses further apart, and/or lowering the dose. i forgot to say, check with a few pharmacists, not just one pharmacist, to learn all you can.
also, gingko combined with doxy are an absolute no no! check supplement containers,if any, for this herb!
Posts: 2708 | Registered: Feb 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Concerned. So glad you're hanging in there with this. Sorry you aren't with an LLMD, but until you are, TuTu is right: 50mg is just about enough to aggravate the spirochetes -- and definitely NOT enough to be curative.
Please check out the newbie links at the top of the page. Read Dr. B's treatment guidelines at ILADS. It's pretty much 'standard operating procedure' to give 200 mg twice a day.
Increased intercranial pressure (i.e., screaming headache) is both a "herx" effect as well as a side effect of doxycycline. It won't last forever, but might last a while. Along with it, don't be surprised to see extreme tiredness, mental fog, and the like.
"Diamox" is a med that helps about 50% of people suffering from what I call 'exploding head.' It did not help me. However, maybe your doc will give you a sample to see if it helps your son. Other prescription headache pain meds might help ease him through the headaches, if regular aspirin won't do it.
Watch out for sun exposure -- it takes next to none to fry him senseless! I mean CRISPY! Even just having his arm exposed in the car for a nice hour's drive will do it.
Please print out relevant portions of the ILADS guidelines and ask to be upped to at least 400 mg a day. Please continue to try and get in with an LLMD. Remember, most chronic Lyme stems from people who were treated incompletely, like this doc would probably treat your son (however inadvertently!!) Keep him gently educated and lobby for your son's health.
Make sure this duck knows about co-infections. Ask him offhandedly how he intends to address the cystic form of Lyme (read up first). His answer will almost assuredly convince you that you need an LLMD.
Keep posting and asking questions!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
quote:Originally posted by SAK: I took 600mg doxy each day. I didn't herx badly though. I know that at a higher dose of doxy (I think above 400mg) you cross blood-brain barrier. That's something to consider.
Sak.......what do you mean about crossing blood-brain barrier?
posted
I was told by my LLMD that 200mg/day is too low. I'm not sure if weight plays a factor in the amount, however. One thing that can be done is to check blood levels..both trough and peak. This may help determine the right dosage.
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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posted
I think good docs vary in their approaches. And dose according to response. Therefore, it is perfectly legit to start out low and ramp up. Responses to dosage are very individual. If he has a headache from low dose, a higher dose is going to make him feel a lot worse. I don't see a problem with going up gradually. This is not a torture contest. Yes, higher doses would be a good goal, when your son is able.
Posts: 8430 | From Not available | Registered: Oct 2000
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I just want to comment here again. It seems like more and more LLMD's are prescribing 200mg of doxy a day to start. I think we all know the reasons for this, so im not going to bring attention to it here. I was angry my LLMD did this and now im thankful he did as im having trouble with 100mg now.
I would be leary if he continued to treat at that low of a dose.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
How old is your son? Young teen agers and younger children metabolize drugs at a different rate than adults ( This is true for people over 65 too).
The normal theraputic dose for adults is 5mg/kg of body weight. A kilogram is 2.2 lbs.. so divide your weight by 2.2 then multiply by 5 = dose of doxy in milligrams for body weight-
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
About 25% of the serum level crosses the blood brain barrier with any dose of Doxy. The problem is getting high enough levels in the CSF which do any good. That is the reason why a high dose is prescribed for neurological infections.
My LLMD uses 200 mg/d in combination w/other abx, 300 mg/d or more as a monotherapy.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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