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  • Oral antibiotics with disseminated disease?

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    Old 05-07-2007, 05:33 AM   #16
    Yourtroubl
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    Re: Oral antibiotics with disseminated disease?

    Benicar is a blood pressure pill. Why did your doc put you on it. I just started taking it last week because my blood pressure was so high.

    I want to get well on orals too. But its not happening. I am at wits end.

     
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    Old 05-07-2007, 05:47 AM   #17
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    Re: Oral antibiotics with disseminated disease?

    Quote:
    Originally Posted by Yourtroubl View Post
    Benicar is a blood pressure pill. Why did your doc put you on it. I just started taking it last week because my blood pressure was so high.

    I want to get well on orals too. But its not happening. I am at wits end.
    Benicar is a Blood pressure med. but is used in the Marshall Protocal because Benicar has the the ability to block the type of inflammation that occurs in LD w/o blocking the other immune system funtions that allow the body to fight the infection, and has been shown to increase the effectiveness of other lD treatments. It has not been found to have a neg. effect on people with regular blood pressure, such as droppong it too low. Hope this answered your ?, Sarah

     
    Old 05-08-2007, 03:26 AM   #18
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    Re: Oral antibiotics with disseminated disease?

    Quote:
    Originally Posted by sarah92202 View Post
    My son is 14, he got Lyme when he was 8, but wasn't diag. until Oct. of last year. we live in Texas but he sees Dr. Jones in Ct. We went in Oct & Jan to see him, he is a wonderful caring man. I have never met a doctor that I liked more than him. My LLMD is an associate of his in Ct. so my son and i go see our LLMD's there. If your son is pos. for Lyme you can get free flights to Dr. Jones office through Miracle Flights for Kids with a letter from Dr. Jones and then stay at the Ronald Mconald house that is a few blocks away from his office. Do you think that your son was born with LD? Is your son being tested by an LLMD? Are they using Igenex Lab? Sarah
    Sarah, my son shows no symptoms, we are not sure to test him or not. We are very in the dark about this. He seems to be normal. But he is 17 months old. We do not know what he is thinking. A llmd in NC said just to watch for symptoms. Obviously they don't treat unless they are present. Another non-llmd said to get him tested by Western blot. We are not sure whether without symptoms he will test positive or show antibodies. The llmd in NC said he thought I was infected before pregnancy. It is terribly confusing. Do you know why that doctor Charles is being sued. We wanted to send money for his defense. We might need him some day.

     
    Old 05-08-2007, 04:06 AM   #19
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    Re: Oral antibiotics with disseminated disease?

    I got a phone call yesterday from our LLMD reminding me about the seminar tonight from 7 to 8. It's on Lyme Disease and the use of the hyperbaric chamber. It's at the Carolina Center in Raleigh.

     
    Old 05-08-2007, 07:46 AM   #20
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    Re: Oral antibiotics with disseminated disease?

    Quote:
    Originally Posted by bubbalyme View Post
    Sarah, my son shows no symptoms, we are not sure to test him or not. We are very in the dark about this. He seems to be normal. But he is 17 months old. We do not know what he is thinking. A llmd in NC said just to watch for symptoms. Obviously they don't treat unless they are present. Another non-llmd said to get him tested by Western blot. We are not sure whether without symptoms he will test positive or show antibodies. The llmd in NC said he thought I was infected before pregnancy. It is terribly confusing. Do you know why that doctor Charles is being sued. We wanted to send money for his defense. We might need him some day.
    Is your son having any developmental delays, or had any other health problems? Recurring infections, ear, upperrespitory? I am pretty sure that I contracted Lyme twice, once 3 years before my son was born in WA. ST, and then in 1997 inTexas. But my son didn't start having Lyme symptoms until he was 8, and his dad was taking him hunting on our lease all winter. Doc Jones said that he doesn't feel I passed it on to my son because he was very smart and did everything early, he also played multiple select sports at the same time, and had more stamina than any of his friends. It is really up to you, if it will give you peace of mind, get him tested. Dr. Jones is being sued by a man who is in a custody battle with his ex wife over their kids. Dr. Jones was treating the kids for LD, and the father doesn't believe the kids have Lyme, and is claiming that their mother is making the kids sick herself. He called Dr. Jones and threatened him by telling him that if he didn't testify against the mother that he would sue him also, basically he tried to black-mail Dr,. Jones into testifing that the mother was harming the children.This father had also harrassed the doc in their hometown to the point where they would not see the boys. Of course Dr. Jones told him no, so this idiot took him to court, and it is still going on. this man is just taking it out on Dr. Jones. There is alot more detail to this story, if you have read things about treating beyond protocal, and the other controversies surrounding Lyme. It is a ridiculous attack on what I consider the most caring wonderful doctor there is. He has over 10,000 ped Lyme patients, and he truly cares for each of them. He spends over an hour each visit with his patients, and explains everything to you. He is almost 80 years old, crippled and is still practicing, and dealing with this ongoing circus of a trial. Please if you can send money to his defense fund. If we lose this doctor it will be a tragedy to the Lyme Community. sincerely sarah

     
    Old 05-08-2007, 03:01 PM   #21
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    Wink Re: Oral antibiotics with disseminated disease?

    Dear Sarah,

    We will be sending money to Dr. Jones. It is quite an injustice for these people to do this kind of junk. I think I will get my son tested after I am in treatment for a while, he has had a cold for a long time and has developed allergies and excema. These are quite common in babies. But I want to see if I can if he is exposed or is band positive for now.:I don't want to disrupt the normal flow he has ongoing. But I will keep my eyes PEELED.

    Take care of yourself, I will check in with you later

    Last edited by bubbalyme; 05-08-2007 at 03:01 PM. Reason: mistake

     
    Old 05-08-2007, 03:03 PM   #22
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    Re: Oral antibiotics with disseminated disease?

    Quote:
    Originally Posted by cbsoapfan View Post
    I got a phone call yesterday from our LLMD reminding me about the seminar tonight from 7 to 8. It's on Lyme Disease and the use of the hyperbaric chamber. It's at the Carolina Center in Raleigh.
    Dear CBsoapfan, I just talked to the office today, they didn't mention anything. Maybe because I am not on full therapy. You see I have some gallbladder problems and have refused IV's. But they were nice and have started me slow. Hopefully I can tolerate this regimen and they will bump me up in two weeks. Then I will get as many oral vitamins into me as possible. I hope you are doing well. Write me back.

    Last edited by bubbalyme; 05-08-2007 at 03:06 PM.

     
    Old 05-08-2007, 06:11 PM   #23
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    Re: Oral antibiotics with disseminated disease?

    They didn't really talk about the hyperbaric chamber that much. They talked about Lyme in general. Very interesting seminar. I knew most of it already because I had the handout already, but it was nice none-the-less.

    Has he mentioned the gallbladder flush to you? He talked about it a bit. Before I knew I had Lyme, I had my gallbladder removed. It had stones and infection. Anyways, he was talking about this concoction to help improve gallbladder function.

    Was your son tested on Monday? I was up there today getting my IV's of Vit C and other stuff (whatever the other stuff is). Then I stayed for the seminar. I am definitely exhausted. Tomorrow I"ll probably have a burst of energy.

     
    Old 05-09-2007, 06:34 AM   #24
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    Re: Oral antibiotics with disseminated disease?

    Hi bubbalyme. Are you on IV Rocephin? Some doctors pulse it five days on and two days off to prevent gallbladder sludge.

     
    Old 05-09-2007, 06:55 AM   #25
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    Re: Oral antibiotics with disseminated disease?

    He's probably not on it. Two reasons I think this is that our doctor usually sends his worst patients on somewhere else so that he doesn't have to handle that many IV cases (for Rocephin), but now he's going to have to start since Dr. J is moving his practice and several of his patients are now coming to Dr. P. Second is that I think Bubba mentioned refusing IV because of Gallbladder issues. Dr. P does prescribe Actigall when he does IV Rocephin. He talked about it last night at his presentation.

     
    Old 05-09-2007, 02:58 PM   #26
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    Re: Oral antibiotics with disseminated disease?

    Dear CBSoapfan, By the way, my husband set me up so I am actually a female. I will get my husband to change the choices under my name. I didn't know that Dr. P did any IV antibiotics? Did he say at his seminar that he did? It sounds like Dr P. might be a little overwhelmed with Dr. J moving to DC, that is what our PCP told us. I checked with the pharmacy they said amox. and biaxin was okay and it should cause maybe only a stomach ache.
    Before your gallbladder was removed what was your symptoms. They are worried mine will go bad with the lyme as a seconary g/b infection. Dr. P. said I may have to wait until I get infected to a point a regular surgeon will take it out. I have to go to the office tomorrow to get more vitamins. I am feeling good tonight and it scares me because I don't know what wierd symptom is going to come next, hours or days? Very frustrating.

     
    Old 05-09-2007, 03:46 PM   #27
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    Re: Oral antibiotics with disseminated disease?

    I didn't get him tested. I am holding off for more info. I don't see any symptoms and Dr. J said just to watch him very carefully. I am wondering if he was right. I am still on the fence without any symptoms to even put him through the bloodtest. Dr. J said that even if he tested positive without any symptoms they don't treat. So I think I will just talk about it more until I can make a definate decision.

     
    Old 05-09-2007, 05:22 PM   #28
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    Re: Oral antibiotics with disseminated disease?

    First, call me Jennifer! ;0 If you use L-Glutamine and the Probiotics that they give you, it should help the stomach issues. Jeff is wonderful. When I had my GB removed, it was an emergency surgery. I didn't know I was having problems. Every once in a while I would wake up with severe abdominal pain. I thought it was gas. One night it happened and it wouldn't go away. My husband took me to the hospital and upon a CT Scan of my belly, they found several stones blocking my bile ducts. It was also inflamed. They had an emergency spot open up and performed surgery right away. I didn't have an option of thinking of other options. It happened within 15 minutes of them telling me I was having surgery.

    Apparently, he was sending his worst cases off to Dr. J. He doesn't like to do IV Antibiotics because of how the NC medical board is so he was sending them to Dr. J. Now I guess he really won't have any other options. I am sure he is a little overwhelmed. Is your PCP in Raleigh? I haven't seen my PCP since my diagnosis and I'm a little nervous to go back. I'm sure I'm in for a few eye rolls when I go back and tell them what I found.

     
    Old 05-09-2007, 05:29 PM   #29
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    Re: Oral antibiotics with disseminated disease?

    I meant to ask you if you have been to any of the meetings through the NC Lyme Disease Foundation in Raleigh? They have a meeting coming up in June. I myself have never gone, but was thinking about it.

     
    Old 05-09-2007, 05:49 PM   #30
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    Re: Oral antibiotics with disseminated disease?

    Hi Jennifer, I am Michelle M. I have switched PCP's on the basis that the other one I had was truly cruel to me after a few months of looking for what was wrong with me he said I had muncheusen (SP) syndrome. It really set me back and was quite disturbing to me.

    I have not been to a Raleigh meeting of NC Lyme disease. I might go I am not sure where it is. I do have the name of a pcp if you need one I won't type it because they are inquiring into why she would prescribe so many antibiotics. I would have to give you my email first. So if you need her name just tell me.

    I am sitting here with this gallon in front of me thinking I will develop the first icecream treatment. I am a big girl I don't want to come out of the other end of this even bigger, but for now it is good therapy.

    Have a good night.

     
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