I was wondering about taking two meds at the same time. I go to dr. C in MO and he only prescribes one med, and says to stay on it till you feel ok, and if not, switch to a different one. Well, I've read others that take two at a time and switch to "surprise" the bacteria. I thought you have to switch and also treat co-infections too.
I'm on my death bed with neurolyme and ready to start treatment but don't believe 50mg of doxy will do it. Have any of you had luck with neurolyme with just orals. Since I live in texas, I can't do IV's. What about shots? He says shots are just as effective.
Posted by MorningSong (Member # 19989) on :
My LLMD wants to do three antibiotics at one time -- each one to to destroy the different forms Lyme takes (cell wall, no cell wall, and cyst form).
She first started me on 2 abx to see how body will respond, and then wants to add a third to destroy the cyst form. She then wants to pulse the 3rd one (ie. only take it on certain days).
Regarding the Neurolyme, it would be important to have an antibiotic that crosses the blood brain barrier as not all do.
Praying that you will find the help you need and for progress in your recovery.
Posted by Abxnomore (Member # 18936) on :
You are on mono therapy and 50mg of doxy isn't going to do a thing for you. I've never heard of such treatment. Dr. B's guidelines advise that you can go up to at least 400mg of doxy and I believe up to 600mg but I'm fuzzy on the upper limit. You are only on 50mg.
You are not on a cyst buster, either. 50mg of doxy will never cross your BBB. You need high doses of orals to cross the BBB, preferably in combos.
Many patients see doctors out of state and are on IV's. Mono therapy is a waste of time, if you are that ill.
Shots are effective but it doesn't sound like you have a well rounded treatment protocol.
Without sounding rude, I can only advise you to consider getting a new LLMD and stop traveling so far.
There are plenty of good LLMD's in CA and other western states. Your treatment protocol sounds totally useless to me. It may work for other patients but it clearly is not working for you.
Put a post in the "seeking a doctor" section and ask for help finding a new LLMD.
[ 08-24-2009, 10:50 AM: Message edited by: Abxnomore ]
Posted by seekhelp (Member # 15067) on :
For the most part, I agree with Abxnomore. When you say on your death bad, I'm not sure how fragile your health is. That's a huge piece that needs to be addressed. That dose IMO is useless. I can't fathom why it's being Rxed.
Posted by Leigh Rivera (Member # 21801) on :
My MD prescribed 400mg of Doxy before my confirmation even came in. I thought it was a lot but Im reading that, that is the way to go. Good luck! In case you have not read ahead, the higher doses will make you feel more sick like I did. Its normal.
Posted by Ocean (Member # 3496) on :
Hi,
50 mg seems awfully low. Are you sure it isn't 50 mg several times per day? Perhaps he is starting lower as to not overwhelm you body?
I don't really know as I've never gone to him. My LLMD started me with 300 mg of Doxy, and I think he started me on that lower amt because he said I was thin...otherwise probably would have been 400 mg.
I'm so sorry that you are so sick and I hope that you are able to get the help that you need.
perhaps someone who sees your same LLMD will pm you or something, they may have insight into this protocol.
Take care, Ocean
Posted by JamesNYC (Member # 15793) on :
Wow,
I agree with Abxnomore, get yourself a different Dr. An ILADS LLMD.
No way that is the right treatment. If you're on your "deathbed" you need more aggressive treatment. I'm not even sure the ISDA guidelines would start with that low a dosage.
I looked up Doxy, the initial dosage is 100mg twice a day. 100mg is the maintenance dose. I have no idea what 50mg is.
Is this the same Dr C who gave us the WB explanation? If so, I have no idea what he's doing, he seems very out of step with ILADS.
Unless he does not believe you have lyme. How were you dxd?
Good luck,
James
Posted by seekhelp (Member # 15067) on :
Kathryn, glad to hear you're doing better. Doxy did me in too. I wish I saw that type of steady improvement.
The million dollar question is does this treatment result in cure/remission in the long-term or do we have to be on Abx for the rest of our lives suppressing symptoms because the infection never got pummeled? That makes me sleep uneasy at night, though remission would be a miracle anyways. The 5-10 year plan will bust me financially and emotionally.
Posted by purplemom (Member # 21064) on :
maybe is he starting you slowly so you do not go off the deep end?
i'm taking 2 abx and started at half the dose very other day
![[Smile]](smile.gif)
Doxy did me in too. I wish I saw that type of steady improvement.