Haven't been on the board for a while and have some questions or need an opinion or suggestion with someone who has been dealing with the same thing. I am not a severe case but at any rate would like some answers that give me a little insight. Here is my history.
Diagnosed with LD in 02/05 and I first started with Doxy and then switched to Ceftin which I have been taking for the last 10 months. I do pretty good with an exception of a few bad days a month. I feel generally good except for a couple of headaches on my right side behind my eyes and pain that I would describe as floating around. Sometimes it is in my fingers and other times in my toe or foot. Alot of times it is unilateral (right-sided)in my head and right leg. Dr. D. in PA is treating me and I am for the most part feeling okay. There are days when I have to lay down or just tolerable pain in my right side. After 10 months of Ceftin at 1000 mg. I don't understand why it doesn't go away completely. I still have facial twitching (elvis lip) and at night when I lay down it grabs my spine so much that it makes me arch my back. I wonder if I have chronic neauro lyme and if it will ever go away. My liver looks good and I tested negative for co-infections a couple of months ago. My last Lyme titer was negative but on the high side of negative. Since my last BW to check my immune system my NK cells have dropped by two points. The Nurse Practioner seems to think that by itself is not significant and that it could have to do with a simple matter of hydration. She said if my immune system dropped way down then she would tend to think that their mode of tx is not working. Now since my last check-up they want me to drop my dose of Ceftin to 250 mg twice a day (one pill instead of two) I am scared to do this since they tried it a couple of months ago and I started getting pain back again. But I guess at some point I have to move toward that. I am also taking herbs for conception purposes. Heres all that I am taking.
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Hi Nuke,
I don't know what to tell you except......
I switched to my LLMD permantly because my insurance LLMD was going to wean me off the meds. Even though he assured me if I continued to feel badly we would go back.
As long as you are comfortable with their experience......... I just wasn't ready and I knew it.
I was told there are other ways to boost your immune system. Such as vit c 1000 3x a day.
I'm not a Doctor and don't know very much about the medical feild I just went with my instinct.
For my husband and I the cash LLMD is right on.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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bettyg
Unregistered
posted
Nuke,
Welcome to the site.
I have a big favor to ask. Please go back into your post here and EDIt/USE THE PENCIL ICON, and break it up into SHORT paragraphs of 6-8 lines of text and DOUBLE space between them.
We long term lymies can't read & comprehend such long paragraphs. Help us out so we can help you too. Thanks.
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
It appears as though the ceftin has taken you to a certain amount of healing but no further. Pretty common for lyme patients.
Perhaps, you could ask your doc for something like biaxin which penetrates deeply, and/or plaquenil to assist in deeper penetration.
The other thing you may possibly need is a cyst buster like flagyl or tini to throw in the mix as the cyst form may be hampering a full remission of symptoms.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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liz28
Unregistered
posted
If you agree with the Dr. B protocol, you are supposed to combine a cephalosporin (rocephin, omnicef, ceftin) with a macrolide (ketek, zithromax, biaxin), and maybe a cyst buster. Dr. B's latest trend is also to treat co-infections as a matter of course.
Ceftin is one of the weaker drugs out there, and is rarely taken on its own. Rocephin is a much stronger version of ceftin, and as you probably know from reading the board, even that often doesn't work. If you are able to afford it, one of ketek's selling points is that it is the latest macrolide generation, and doesn't require plaquenil as a co-agent.
Personal opinion here: ten months is way, way, way too long to go without seeing improvement.
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I have seen improvement but not to the point where it should almost be completely gone. It was interesting what was said about the cyst busters. Dr. D. did point that out that the spirochetes may be encapsulated. If that is the case then he should have put me on a combination therapy. When he comes back from vacation I want to talk to him about that. Maybe what I need is one last one two punch to kick these little things in the teeth! Does Ketek break the cysts up by themselves? Also, that just shows what I know. I thought Ceftin was pretty strong. But I guess not for the Lyme maybe. Thanks for brainstorming this.
Posts: 204 | Registered: Jan 2005
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posted
Nukegirl, I have a question for you, please. Have you had any side effects from long term use of antiboditcs? I've recently started Doxycycline and have concerns of long term use. Thanks, Dalphia
Posts: 97 | From Tennessee | Registered: Nov 2005
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so many pills! 
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