i am so scared right now..i don't want to get worse..i have made a steady progression downhill and really only want to go up from here..my anxiety are levels are off the charts..thanks for any input or encouragement from others who have succeeded at this dose!
we'll see what others have to say. 200 mg of doxy *may NOT* cross the blood brain barrier ( whcih is where you need it to go,a nd any llmd should know this)
BUT there is also the general perspective that if a dosage works- FREEZE. Dont push it...
but then there is the worrry that if you DONT
you will get worse.
Trust me, I fully understand- trust me! Go with your gut is pretty much all I can say for now,
but ok if I were you - but Im not- but if I were, I would ask my LLMD to backup, regroup and check himself again.
Maybe..
I dont really know about the dosage amounts.
I just finished a month of doxy 200mg twice a day.
Within just a couple of weeks my knee, elbow and joint pain improved greatly.
I stopped the doxy only because im starting Mepron/Zithromax for babesia.
From everything i have read on these boards, it seems like 400mg a day is what most people take.
I wish i could help you more.
Good luck to you,
Jordan
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It sounds like you are making small improvements? It took me 8 weeks to really start feeling better. I have been taking doxy 100mg 2x day and for about 10 weeks and have had great improvement.
If you search for my user name you'll find out more information about my journey.
We wanted to use Rocephin IV, but I am allergic. I had lyme symptoms for just under a year when I finally went the doctor and got diagnosed.
We tried to up the dose - worried about not crossing the blood brain barrier, but I could not tolerate it.
We will be sticking with the doxy until I plateau and then reassess my situation.
If I am still having issues, particularly neuro issues, we'll look at other options.
My idea is - if it's working leave it be.
I am taking 200mgs.---felt so good-asked if I could incease to 300---One said-ok.-try it. Was ok for a while then OUCH. Had to ramp it down.
Now the 2oomgs and Flagel are kickin' butt to dem critters.
My point is--please check with your LLMD to be sure the weight thing is how dosage is determined and then be sure that whatever else you are on -dosage wise--is not too much stuff altogether.Close supervision-I guess is what I'm concerned about.
Hang in there with it-took a while before I could say Wow.
Good luck with getting it all straight.
If doc allows you "med breaks"-take them. I would find that after a couple of breaks it was like "where's my Doxy, !"
Chocolat
Keep us updated on whats going on. I would like to know what you end up doing.
You can e-mail me anytime if you have questions. At least i know a little about doxy.
Chocolat:
I was just asking this question about weight and ABX. I was taking 400mg of doxy and i weigh 100 pounds.
Now, my LLMD wants to swich me to mepron/zithromax. She wants me to take the mepron THREE times a day 5ml (teaspoon) and the zithro TWO times a day 600mg.
I called the office and asked if the prescription was right and the nurse told me it was. I didnt get to talk with my Dr. though.
So, im wondering how a LLMD decides how much medicine to put you on? I dont want to disagree with her, but i think im going to start with less than she wants and see how i do.
Interesting subject.
Jordan
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NONSENSE!
YOU are paying him/her to treat you. They are a consultant in your health care. This gives you the right to question them. I would go so far as to say that you have an obligation to yourself to do so.
Just because you ask a question about your health care does not mean you are questioning their credentials. It means that you are an informed patient participating in your treatment.
I would not want to be seeing a doctor if I did not feel that they welcomed my questions as an opportunity to educate me.
Just look at the anxiety it is creating for you. That is not working in favor of your recovery. Your doctor whould WANT to allay your fears.
I would bet that your doctor would welcome your questions. But the only way to find out is to ask them.
I go to every medical appointment with two copies of a prepared document. Included on that document are sections for:
SYMPTOM UPDATE
OTHER UPDATE (other doctors I've seen, status of disabilty application ... )
QUESTIONS
OTHER (requests for medical records, test results, supplement purchase...)
As soon as the doctor walks into the exam room, I hand it to him. I don't know if they LIKE this, but none have seemed to mind. Some may even appreciate some written guidance in what you hope to achieve at the appointment. As for me, it makes sure I don't forget anything!
I do not in any way mean to criticize. I used to be afraid to ask questions. I'm too sick to care much anymore what anyone thinks of me. I highly recommend that approach! :-)
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When I'm old, I don't want them to say of me, "She's so charming." I want them to say, "Be careful, I think she's armed." -G. Stoddart
I weigh 100#, too.
The Md.'s (regular ones-like PC, etc.) seem to always take my weight into consideration for meds.
But specifically, the 2 Lyme guys I have seen ( one an ID-but now a real LLMD) based the Doxy. on weight.
Guess there are alot of factors. Makes sense to base it on weight. To me, anyway.
Just took my 7# and 14# Schtzu's (sp) (dogs) to the vet yesterday. They were both given abx. -Frontline-mange med. for one. The vet rx.d all their meds on their weigh like he always does. Food for thought- ?
Can't help you on the Mepron. Haven't taken it-my Zithro. was never over 600mgs.
Are you kinda frail from being Lyme-loaded ? I am-maybe why the weight thing.
Trust your gut !!!!!
tickedntx-
Glad you pumped me up re: being assertive with these dr's. Sometimes when you have been so beaten up-scoffed at--passed on to the next doc in line, etc.-you ( I ) lose your edge.
What do you and others do when say-you have had lab work done and you don't hear about it for what seems like forever. This is one thing that really makes me mad.
Yeah--I do call but am I expecting too much to think that if I forget, a nurse or someone should call and say-hey, we got some labs back--they look good-s-----,you're dead-or just at least send a copy ?
Guess they did that in the ol' days and I was used to it.
Also-I find myself rushing-pleasing them! If thats not stupid. How long do you usually spend with your doc --with documents in hand ? It obviously speeds up the process and I do go in with notes and questions.
Any other advice about how to be gutsier ( don't believe thats a word-but you know-)
Use to be very assertive but this disease has changed alot of things I USED to do.
How do the rest of you folks handle your docs these days ?
Chocolat
[This message has been edited by Chocolat (edited 16 June 2004).]
Donta treats people with tetrocycline which doesn't cross the bbb and has had some success. I bet he's had some dramatic failures too... I think it depends on which strain you've been infected with. There are some strains which don't have a prevelance for the CNS. Maybe there's some of those strains near Boston where he practices. Personally I don't like to gamble with my brain...
Smiles - is doxy the only abx you are taking?
Chocolat - Did your doctor start you on doxy at first or did your doctor do a combo of abx? Thanks for the info on weight..I am 5'3" and 125 lbs..I used to be 140 but I lost 15 lbs when I started getting sick..
Jordan..I will keep you posted..thanks for the offer to email you..that was very nice of you!
ticketntx..your message to me was very important..I don't seem to have a "voice" when it comes to my own health..when I am sick I get scared..I just checked my calendar and I don't see the doctor for anoher 25 days..I don't think that emotionally I can wait that long..I have never had such bad axiety in my life..i mean my hands are shaking as I type..I will have to call..I am just scared that I won't beat this thing!
Cathy - Doxy is the only abx I take. I too was worried about the dosage, but I did not tolerate the 400mg. As I am seeing improvement, we've decided to leave it alone for now.
Chocolat - never thought about the weight factor - hmmmm....
tickedtx - what an empowering post! I too type up questions for doctor, but never thought to type up all symptoms and give it to him. I agree, we are our best advocates!
caat - forgot to put in my post that my symptoms are primarily neuro - tingling arms and legs, brain fog... and still have seen an improvement with the 200mg.
Cathy - please keep us posted on your progress!
[This message has been edited by smiles (edited 16 June 2004).]
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waiting and praying for a miracle
In November started Zithro.-600 mgs.
Then: IV Rocephen-2 mg-only for 3 weeks cause had trouble with infection-not drug.
Zithro. along with this.
Then Ceftin/Zithro
Ceftin/Doxy.
Just Doxy.
Doxy/Flagel
To date still on Doxy./Flagel but have lowered the Flagel---Think I told you-can't remember---did try 300 mg. Doxy. but had to ramp it down.
BTW-just had to talk to my PCP's nurse about another matter-asked her if Doxy. is usually Rx.'d by weight. She said as far as she knew, it was.
I think--maybe I am wrong--that with Lyme and "friends", your LLMD can increase your dose depending how you tolerate it-what results you are getting from it, etc.
Lyme is so diferent that I believe your MD's call is broader--different thiking than the regular MD's (good ones and ducks ).
They can allow more flexibility due to the nature of this stinkin' disease and because they know what they are doing--or we hope they do. Takes tougher doses because they understand the disease-whereas the others, as we all know, don't know S--- from Shinola about it-nor do they want to.
Hope this is what you wanted.
Take care-Hope today finds you with peace in your heart.
Chocolat
Annetsky..thanks for your words of wisdom
Chocolat..thanks for checking on the issue about doxy and weight...I don't weight much right now so I know that is probably a big factor in all this..I like your user name!!
Hope you are all doing well!!