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    Old 05-05-2007, 01:37 PM   #1
    bubbalyme
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    Angry Oral antibiotics with disseminated disease?

    I was wondering if anyone has ever been treated or gotten their life back after being on only oral anti-biotics. I was wondering. I am on my six months of widespread lyme disease in my system. I am one of the lucky ones that has tested positive both ELISA and Western blot. Thankful for that.

    But I am so tired and I am only new at this. Somedays I feel as if I am so dizzy, I am wondering if it is the ammonia. Other days my heart decides to do a jig all the while suffering a million other things in my body. I was seriously considering many strange thoughts this week.

    But I wonder if anyone has ever been treated without IV with a six month history and been successful. I have lost all of my vitamin D in my body or am really low by the last blood test. Losing a tonne of other vitamins. Having trouble absorbing wondering if there are problems in my gut that are hurting treatment.

    Dr. Pittman wants to treat the GI so better absorption will be acheived. I pray to God this will work.

    I feel for everyone who has come into contact with this nightmare illness.

    Last edited by bubbalyme; 05-05-2007 at 01:38 PM. Reason: Wife of Bubbalyme

     
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    Old 05-05-2007, 01:58 PM   #2
    Bill S
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    Re: Oral antibiotics with disseminated disease?

    Quote:
    Originally Posted by bubbalyme View Post
    I was wondering if anyone has ever been treated or gotten their life back after being on only oral anti-biotics. I was wondering. I am on my six months of widespread lyme disease in my system. I am one of the lucky ones that has tested positive both ELISA and Western blot. Thankful for that.

    But I am so tired and I am only new at this. Somedays I feel as if I am so dizzy, I am wondering if it is the ammonia. Other days my heart decides to do a jig all the while suffering a million other things in my body. I was seriously considering many strange thoughts this week.

    But I wonder if anyone has ever been treated without IV with a six month history and been successful. I have lost all of my vitamin D in my body or am really low by the last blood test. Losing a tonne of other vitamins. Having trouble absorbing wondering if there are problems in my gut that are hurting treatment.

    Dr. Pittman wants to treat the GI so better absorption will be acheived. I pray to God this will work.

    I feel for everyone who has come into contact with this nightmare illness.
    YES, I've been only treated with orals, despite having disseminated disease for 2.5 years, with major symptoms and multiple relapses. My LLMD said he tries to reserve IVs for those with mostly neurological symptoms, which mine were "mild", despite significant brain fog and memory issues...

    My doc put me on Vit-D3 supplements (initially 2000IU, raised to 4000IU recently), along with 6g fish oil, Tindamax, Cefzil, and Benicar. It's been working out WELL so far, albiet slower than I like. In treatment with this regimen since late December '06. I'm at about 98% of normal, with some persistent minor symptoms. My CD-57 is rising, though it's not yet where we want it to be (that'll take some months).

    My doc says that the low Vit-D test results are because I have so much inflammation in my body; the Lyme spirochetes apparently go into cyst form and create inflammation around themselves as protection from the antibiotics. You have to keep the Vit-D levels up, and the Benicar regimen seems to help with both reducing the inflammation and helps keep the die-off reactions down.

    Last edited by Bill S; 05-05-2007 at 02:00 PM.

     
    Old 05-05-2007, 03:41 PM   #3
    bubbalyme
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    Wink Re: Oral antibiotics with disseminated disease?

    Thanks for writing back Bill. I have been so worried about this. Because I don't want if I can help it to go into the world of IV antibiotics. All of the nurses and expense and I am just plain frightened.

    I have had twitching and some neurological involvement. Your doc sounds very knowledgeable. I am worried about my situation my doctor couldn't tell me why my vitamin D was so low. What is CD 57, what does that mean? What is Benicar? I seem to have so much to learn.

    Good luck to you. I hope you will be feeling 100% soon.

    Michelle

     
    Old 05-05-2007, 03:47 PM   #4
    bubbalyme
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    Re: Oral antibiotics with disseminated disease?

    Bill,

    I had a question. I was wondering where your doctor was located. I was thinking about leaving NC and looking elsewhere so we would maybe have some better luck. Our first doctor is under restriction so we know we have to change to be able to continue treatment unfortunately.

     
    Old 05-05-2007, 04:03 PM   #5
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    Re: Oral antibiotics with disseminated disease?

    Quote:
    Originally Posted by bubbalyme View Post
    Thanks for writing back Bill. I have been so worried about this. Because I don't want if I can help it to go into the world of IV antibiotics. All of the nurses and expense and I am just plain frightened.

    I have had twitching and some neurological involvement. Your doc sounds very knowledgeable. I am worried about my situation my doctor couldn't tell me why my vitamin D was so low. What is CD 57, what does that mean? What is Benicar? I seem to have so much to learn.

    Good luck to you. I hope you will be feeling 100% soon.

    Michelle
    Trust me, the oral antibiotics can get quite pricey too (runs me about $250/month), but if you can be treated effectively without resorting to $4000+/month IV antibiotics, great.

    It's VERY important indeed that you get treated with 2 different antibiotics; one to kill the spirochete form, and one to kill the cyst form. If you didn't know, the spirochete can react to changes in it's environment (like antibiotics) by burrowing into tissue and changing into a cyst which then waits until things become more favorable and come right back out. You HAVE to kill the cysts or the Lymes will come back again and again, despite multiple courses of antibiotics. Many docs don't realize this. Flagyl or Tindazole are very useful here - the Tindazole is a second generation Flagyl with fewer side effects. I use it myself.

    CD-57 is a test that can be run by lab corp that checks for levels of a particular white blood cell type. As far as is known, ONLY Lyme affects that number, so if it's low, it's indicative of active Lymes. The Lyme disease spirochete has the ability not only attack that type of white blood cell, but it can suppress the body's production of it. 60-360 on the test is considered "normal" by most lab's criteria, but many Lyme docs want it to be closer to 200. Under 60 is a real concern.

    Benicar is a blood pressure medication that is being used by some docs. It is only a so-so blood pressure reducer, but it has a useful side effect; that of reducing the "cytokine response" and reduces inflammation. I believe it was the Marshall Protocol guys who came up with using it for inflammatory disease, though it's not a commnly accepted use of the drug. It seems to also have some activity versus the Lyme spirochete directly, but I haven't seen any actual studies of this (this was merely an observation of my doc because I had dieoff reactions - in my case, many red spots over my body - BEFORE I started antibiotics but was on the Benicar).

    One school of thought is the Marshall Protocol guys who think Vitamin-D is bad and one should greatly reduce it to help with Lymes. My doc is of the opinion that one should bring up Vit-D levels to a normal range. Folk with inflammatory diseases like Lymes, Lupus, ALS, etc seem to have lower than normal Vit-D levels, and my doc has noticed great improvement raising Vit-D. The Marshall guys say the Vit-D acts as an immune suppressant, suppressing symptoms and the Lymes simply gets worse. My experience is that the Vit-D has helped me, and my CD-57 numbers are steadily increasing, which is what we want.

    There are many wrinkles and new things to be learned in the treatment of this awful disease; it's very crafty and adaptable.

    Last edited by Bill S; 05-05-2007 at 04:08 PM.

     
    Old 05-05-2007, 04:05 PM   #6
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    Re: Oral antibiotics with disseminated disease?

    Quote:
    Originally Posted by bubbalyme View Post
    Bill,

    I had a question. I was wondering where your doctor was located. I was thinking about leaving NC and looking elsewhere so we would maybe have some better luck. Our first doctor is under restriction so we know we have to change to be able to continue treatment unfortunately.
    My doc is in MD, near DC. Dr. B. Robert Mozayeni, Rockville MD. If you go to the stickied "great docs thread", near the bottom of page 1, I have more info there.

    He's quite knowledgeable about Lymes, and I think he's right on the ragged edge of state of the art concerning it. Get in touch with his office,and good luck. Let us know how it turns out.

     
    Old 05-05-2007, 05:46 PM   #7
    sarah92202
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    Re: Oral antibiotics with disseminated disease?

    Bubbalyme, my son was infected with LD 6 years ago, and was not diag. until last Oct. He was put on only oral ABX's no intra, and he has shown alot of improvement, he was to the point where he wasn't even leaving his room and was homebound because he couldn't make it through a day of school. He was having alot of problems with anxiety and seeing phantom images and would be scared for no reason, his fatigue has let up about 50%, he isn't seeing things or scared anymore, his twitching and tremors have completely stopped, he still only goes to school 4 hours a day 3 days a week but that is improvement. His main complaint is the neck pain and fatigue now. He has been off his ABX's for 3 weeks and is going back on them Monday. He takes Biaxin, which is a macrolide, minocycline, which is a tetracycline, these are both Protein synthesis inhibitors that attack and kill the spirochetes in the blood system, then he takes Plaquenil which is an anti-mylarial, that kills the cyst form. His doc said 6 more months of this combo and then the plaquenil will be switched to flagyl( which is a protozoal that kills cyst form) for 3 months and then she said he should be done. This combo has been very good for him. We were offered the IV therapy but turned it down. Everyone responds differently to ABX's though, and what may work for one may not for another.You just have to find the ones that work best for you. Good luck, Sarah

     
    Old 05-05-2007, 07:27 PM   #8
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    Re: Oral antibiotics with disseminated disease?

    Hi bubbalyme. There are many oral and IV antibiotics that can be prescribed for Lyme. Orals are often used first because they are less risky, less expensive, easier to administer, and they can be effective. Which meds are chosen depend on many factors such as how long you have been sick, the type of symptoms you have, if you have co-infections, other health issues etc.

    It seems that many Lymies, including myself, have low Vitamin D levels. Are you taking Vitamin D?

    It can take time to recover and it is normal to feel worse before feeling better. If you do need to go on IV antibiotics, they really are very simple to admnister. It may seem overwhelming in the beginning, but after a few days it becomes a very easy process.

    If you need other doctor recommendations, let me know.

     
    Old 05-06-2007, 02:12 AM   #9
    bubbalyme
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    Red face Re: Oral antibiotics with disseminated disease?

    Thank you Ticker.

    Thank you Sarah.

    My son is being tested on Monday. I am so worried about him being so young, but the llmd said that it is possible for him to have it.

    Sarah did your son have it from birth. Did you have lyme before? I know when my symptoms began, but I don't know when I was bitten. Because I had a tick attached to me but no symptoms for years. I had a bite site after they found out about erlichiosis. We are pretty sure though that we have to change doctors. Being treated so far away from home is kind of difficult, but we think it will be worth it in the end to travel to MD or NY.

    Thank you for all your help.

     
    Old 05-06-2007, 02:05 PM   #10
    cbsoapfan
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    Re: Oral antibiotics with disseminated disease?

    I see Dr. P too. What treatment does he have you on? I'm on 3 antibiotics and go in for IV nutrition. I've been given supplements to take as well. Have you spoken with the "vitamin guy?"

     
    Old 05-06-2007, 04:54 PM   #11
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    Re: Oral antibiotics with disseminated disease?

    Hi Bubbalyme. How old is your son? I am sorry he may be infected, but it is better to know so he can get the treatment he needs. With proper treatment, he can get better.

    The best Lyme pediatrician in the country is Dr. Charles Ray Jones in New Haven, CT. He and his staff are wonderful. He sees patients from all over and he has helped many children. If you see him, you can stay at the Ronald McDonald House down the street from his office for about $15.00 per family per night.

    It is not easy to travel to get the proper help, but it definitely is worth it. Many doctors will spread out appointments somewhat and/or do phone consultations in between for people who have to travel.

    Hang in there okay?

     
    Old 05-06-2007, 05:14 PM   #12
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    Re: Oral antibiotics with disseminated disease?

    Quote:
    Originally Posted by bubbalyme View Post
    Thank you Ticker.

    Thank you Sarah.

    My son is being tested on Monday. I am so worried about him being so young, but the llmd said that it is possible for him to have it.

    Sarah did your son have it from birth. Did you have lyme before? I know when my symptoms began, but I don't know when I was bitten. Because I had a tick attached to me but no symptoms for years. I had a bite site after they found out about erlichiosis. We are pretty sure though that we have to change doctors. Being treated so far away from home is kind of difficult, but we think it will be worth it in the end to travel to MD or NY.

    Thank you for all your help.
    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

     
    Old 05-06-2007, 08:33 PM   #13
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    Re: Oral antibiotics with disseminated disease?

    Quote:
    Originally Posted by Bill S View Post
    YES, I've been only treated with orals, despite having disseminated disease for 2.5 years, with major symptoms and multiple relapses. My LLMD said he tries to reserve IVs for those with mostly neurological symptoms, which mine were "mild", despite significant brain fog and memory issues...

    My doc put me on Vit-D3 supplements (initially 2000IU, raised to 4000IU recently), along with 6g fish oil, Tindamax, Cefzil, and Benicar. It's been working out WELL so far, albiet slower than I like. In treatment with this regimen since late December '06. I'm at about 98% of normal, with some persistent minor symptoms. My CD-57 is rising, though it's not yet where we want it to be (that'll take some months).

    My doc says that the low Vit-D test results are because I have so much inflammation in my body; the Lyme spirochetes apparently go into cyst form and create inflammation around themselves as protection from the antibiotics. You have to keep the Vit-D levels up, and the Benicar regimen seems to help with both reducing the inflammation and helps keep the die-off reactions down.
    Hi - are you seeing dr. M at optimal H in MD?

     
    Old 05-06-2007, 08:37 PM   #14
    mere71
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    Re: Oral antibiotics with disseminated disease?

    Quote:
    Originally Posted by bubbalyme View Post
    I was wondering if anyone has ever been treated or gotten their life back after being on only oral anti-biotics. I was wondering. I am on my six months of widespread lyme disease in my system. I am one of the lucky ones that has tested positive both ELISA and Western blot. Thankful for that.

    But I am so tired and I am only new at this. Somedays I feel as if I am so dizzy, I am wondering if it is the ammonia. Other days my heart decides to do a jig all the while suffering a million other things in my body. I was seriously considering many strange thoughts this week.

    But I wonder if anyone has ever been treated without IV with a six month history and been successful. I have lost all of my vitamin D in my body or am really low by the last blood test. Losing a tonne of other vitamins. Having trouble absorbing wondering if there are problems in my gut that are hurting treatment.

    Dr. Pittman wants to treat the GI so better absorption will be acheived. I pray to God this will work.

    I feel for everyone who has come into contact with this nightmare illness.

    i am not cured yet but I am on the mArshall Protcol and I spoke to a woman who was sick with Lyme for over 20 years almost dies several times b/c of cardiac involvement and spent her 20's and 30's in bed - she now runs 3 plus miles a day and claims she is symptom free! She did the protcol for 3 years but only noticed any improvemnet after 10 mos in it - its a tough mental game to stick it out...Im getting results but its slow...I start phase 2 soon. Best wishes.

     
    Old 05-07-2007, 02:58 AM   #15
    Bill S
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    Re: Oral antibiotics with disseminated disease?

    Quote:
    Originally Posted by mere71 View Post
    Hi - are you seeing dr. M at optimal H in MD?
    Yes.

     
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