posted
I was diagnosed with lyme a month ago. I have just finished antibiotic treatment. I am still experiencing leg numbness and weakness. Do I need additional treatment? Will this go away? Is my infection cured?
Posts: 5 | From Lafayette, LA, USA | Registered: Aug 2004
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posted
Godwin1, If you have had lymes disease for any real length of time, often 4 weeks of antibiotics will not kill off all the bacteria. How long were you sick? Do you currently have any other symptoms and have you seen a regular physician or a Lyme Literate Dr.? ...
Posts: 158 | From Vancouver,WA 98682 | Registered: Aug 2004
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BarelyBreathin, Thanks for reply. I was bitten mid-july, rash and symptoms developed about a week later. My family physician prescribed the Doxycycline for 4 weeks. My neurological symptoms developed a few days after I began the treatment. They have continued since then somedays worse than others. Lyme disease is not common in La. I contracted it on vacation. The docs here don't have many answers so far.
Posts: 5 | From Lafayette, LA, USA | Registered: Aug 2004
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Godwin1, Most Dr.s here on the west coast dont know alot about lyme, but there are some Lyme Literate Dr.s in Cal. Go to lymenets seeking Dr. and Post for a Dr. in your area. If you still have symptoms after treatment then I would say its urgent that you get further treatment to prevent long term or persistant lyme, that would be a nightmare, trust me I know! I wasnt diagnosed for 3 years and can now barely manage to get out of the house. Dont let them tell you your symptoms are post lyme, all in your head, or some other illness. You know if your still sick or not. Find a Dr. Who will treat you until all symptoms are gone. Also in the mean time, make sure you are eating good, steer clear of sugars, lyme bacteria feed on it, get lots of good rest, exersize when ever you can, they(lyme bugs) also hate heat, and drink plenty of water to flush out toxins. Let me know if you find a Doc soon, I know Ive talked to people here on the net who have good LLMDs in Cal. Even if you have to travel out of town and pay a bit out of pocket, trust me you need to do this if you are still sick! Not trying to scare you, but IF you still have symptoms please seek treatment, for your sake and your current of future familys. Keep me posted.
Posts: 158 | From Vancouver,WA 98682 | Registered: Aug 2004
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Barelybreathin, So grateful for your input. So you think if I still have the symptoms, it's quite possible I still have "bugs" present. Should I continue with the same antibiotic, a different antibiotic or something different all together? How do I know if I'm cured and this is just some residual damage or if I'm still carrying? I understand blood tests are not reliable. At what point do you say "I'm well" or "this is the best I get"? I'll try to locate the doc like you suggested. Thanks again.
Posts: 5 | From Lafayette, LA, USA | Registered: Aug 2004
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Godwin1, Yes it is my humble oppinion that if you still have symptoms you still have lyme. You havent seemed to have it long enough for further symptoms to be the residual damage. So far as antibiotics aka abx goes I would leave that up to a LLMD (lyme litterate medical doctor), how ever people on here have had some good results with Zithromax combined with Flagyl and other combos like Ketek/Tinidazol, Amoxicillin/Flagyl, Tinidazole/Doxy Mepron/Doxy...etc. reasons for the combos is because many have co-infections or because one abx will kill cyst form(flagyl, tinid) and the other spirochete form. Were you tested for co infections? So far as lab tests go, your right they arent a sure way of diagnosing especially if you send the sample to a poor lab. People on here seem to think Igenex lab is pretty good. When are you well? A LLMD will be able to advise you better on this, but Ive heard you should take abx until your symptom free for a few months, but i suppose it depends on how long you've been sick. Others on here who have gotten full treatmen and an LLMD will be better at advising you on that.
Take Good Care Of You BarelyB
Posts: 158 | From Vancouver,WA 98682 | Registered: Aug 2004
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Welcome to Lymenet, godwin!
I agree with BarelyBreathin that you are very likely to still have Lyme disease. Your best bet is to see a Lyme Literate MD (LLMD), someone with lots of experience and lots of happy patients. Lyme can be a very serious illness if allowed to become chronic.
It's likely that your doctors did not give you a high enough dose of doxycycline. Even if the dose was high enough (400mg or more), with neurologic symptoms, you need a much longer course of treatment than 30 days.
There is also the possibilty of co-infections with the Lyme disease that should be addressed.
I'm going to give you some links to some important reading. You'll need some support to get the kind of treatment you need, and you will probably have to travel to see a doctor, so I want you to be educated enough to be able to insist.
There is lots more, but those are a good place to start. Notice what is recommended for treatment in Dr. Burrascanno's protocol.
DISSEMINATED DISEASE -- Multiple lesions, constitutional symptoms, lymphadenopathy, or any other manifestations of dissemination.
EARLY DISSEMINATED -- Milder symptoms present for less than one year and not complicated by immune deficiency or prior immunosuppressive treatment:
1. Adults: Oral therapy until no active disease for 4 weeks (4-6 months typical)
Doxycycline Adults: 100 mg qid (4 X a day) with food; doses of up to 600 mg daily are often needed, as doxycycline is only effective at high blood levels.
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Riversinger, Thanks for the great info. Y'all have me scared now! I obviously need to continue treatment. I have a good friend who is an internal MD who I just stared consulting about all this. I will pass all this info on to him. It sounds like the combo of drugs is the way to go. I have not had any lab test done so far. I was diagnosed purely on the red rash around the bite and the symptoms I developed within a few days (flu-like). The neuro symptoms developed a few days later and persist. I was especially interested in the cyclic nature of the symptoms. I have definately noticed this trend. Thanks again for all the great info. I believe in being an informed patient.
Posts: 5 | From Lafayette, LA, USA | Registered: Aug 2004
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Well, usually I'm a pretty nice person!
But I did want to scare you enough to get you motivated to treat this. I'm sorry you have Lyme, but if you have it, you need to treat it well. If you had the diagnostic rash, there is no need to test for the Lyme.
You may, however, need to treat co-infections. If your friend is willing to help you, maybe you could get the name of a LLMD for him to consult with. Treating Lyme can be tricky, as can testing and treating the co-infections. It would be great though, to have another doctor learn.
Keep asking questions, there are lots of knowledgeable people here. If you ask in the medical forum, you'll get more answers than you know what to do with.
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Thanks for the great support! I spoke to my friend/md tonight. He knew of one case of lyme in the town where he practices and knew she had been treated with at least 2 antibiotics for 6 months so he's already ahead of where the other docs I talked to are. He also has a good friend who is an infectious disease specialist he's going to talk to. I told him he should study up and become the Lyme expert for La. since we don't seem to have one. I e-mailed him the articles you had attached. He is going to start me on new antibiotics tomorrow and find out if the infectious d. doc can do the tests for me. This is a great web site and even though you scared me at first, it was great to get some answers. I'll keep in touch and pass this site on to my doc.
Posts: 5 | From Lafayette, LA, USA | Registered: Aug 2004
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