rocephin. About to start 30 day IV

Hi Lymechick, welcome aboard. I had neuro lyme and did the oral antibiotic equivalent to Rochephin with very good results. I am still on it 8 months later but most neuro stuff has subsided. You may be able to switch over to orals after the 30 days.

Diet is very important. Mostly all protein and veggies are recommended and green veggies are best. If you read Burrascano's guidelines he gives very good information on diet etc. Supplements, vitamin D, alpha lipoic acid and Acetyl-L-carnitine.

Acetyl L Carnitine is an amino acid (a building block for proteins) that is naturally produced in the body. It helps the body produce energy.

Acetyl-L-carnitine is used for a variety of mental disorders including Alzheimer's disease, age-related memory loss, late-life depression, thinking problems related to alcoholism, and thinking problems related to Lyme disease. It is also used for Down syndrome, poor circulation in the brain, cataracts, nerve pain due to diabetes, nerve pain due to drugs used in the treatment of AIDS, and facial paralysis.

The body can convert L-carnitine to acetyl-L-carnitine and vice versa. But, no one knows whether the effects of acetyl-L-carnitine are from the chemical itself, from the L-carnitine it can make, or from some other chemical made along the way. For now, don’t substitute one form of carnitine for another.

BarnGurl said...
Hi Lymechick, welcome aboard. I had neuro lyme and did the oral antibiotic equivalent to Rochephin with very good results. I am still on it 8 months later but most neuro stuff has subsided. You may be able to switch over to orals after the 30 days.

Diet is very important. Mostly all protein and veggies are recommended and green veggies are best. If you read Burrascano's guidelines he gives very good information on diet etc. Supplements, vitamin D, alpha lipoic acid and Acetyl-L-carnitine.

Acetyl L Carnitine is an amino acid (a building block for proteins) that is naturally produced in the body. It helps the body produce energy.

Acetyl-L-carnitine is used for a variety of mental disorders including Alzheimer's disease, age-related memory loss, late-life depression, thinking problems related to alcoholism, and thinking problems related to Lyme disease. It is also used for Down syndrome, poor circulation in the brain, cataracts, nerve pain due to diabetes, nerve pain due to drugs used in the treatment of AIDS, and facial paralysis.

The body can convert L-carnitine to acetyl-L-carnitine and vice versa. But, no one knows whether the effects of acetyl-L-carnitine are from the chemical itself, from the L-carnitine it can make, or from some other chemical made along the way. For now, don’t substitute one form of carnitine for another.

Wow! 👍 I can't thank you enough for that amazing information. I greatly appreciate it. I'm assuming I could get that at the vitamin shop that I visit frequently. The owner is actually a pharmacist who treats a lot of lime patients so I will bring this list with me. I purchased dr. Horowitz's book, but I seriously don't have the mindset you read anymore and I used to love to read. 39 years old and my brain feels like spongecake! As soon as I start reading I just simply have to stop so it's been hard to do any research.. But I greatly appreciate that. Yes. My doctor mentioned that as well. He said after the 30 day IV, he usually goes to oral as that's the protocol, but if insurance allows it, you can stay on the IV. I just want to feel like my normal self. I can deal with aches and pains, I just can't live with my brain feeling like I have Alzheimer's. It's crazy because I didn't know why my sensory issues were happening and that is what brought me to the doctor to begin with. I seem to have a very hard time driving lately with lots of traffic, bright lights, etc. and I start to feel like I'm in the twilight zone and start bugging out. I then just go back home... Ughhh... It's great to read and encouraging outcome. Thank you so much. <3

mystery1 said...
keep us posted. I am going to talk to my md about getting iv antibiotics. I have been on oral for 6 months. my neuro symptoms are better, but I am so stiff, feel like I can't move, alot of fatigue. just started mepron hoping that would help.

I most certainly will. I was bouncing around from doctor to doctor thinking that it was all in my head. While sadly, my MRI did show white spots so I guess it is all in my head :-/ i'm only thankful that I found a neurologist who would rather treat Lyme disease then actual every day neurological disorders if I making any sense. He such a lime advocate that it's beyond belief! He's my Korean godsend

But I will absolutely keep you posted. They come out Tuesday to start the line. I've always read IV is better, but like I mentioned above, most doctors will not do that. Fingers crossed xoxo

Dannarahn said...
Lymechic, Your symtoms are just like mine: "My main issues have been a lot of neurological with remembering, balance issues, bright lights, forgetting, stuttering, not feeling sharp, incomplete arm and leg Pain... "
I have been on oral abxs for almost 2 months. The slurring has improved ever so slightly, but the other issues are still very real (especially balance)

Anyway,
My LLMD and I will discuss a PICC line next week at my next visit. I will need it for 6 months, and because of that, I would really prefer a Port.

**question for anyone: Will insurance ever pay for a port, or strictly PICC?

Thanks....

Wow. Yup. Those are my exact symptoms to a tee. It is in fact the only symptoms that started after getting sick the end of November of last year, just five months ago... At first we thought it was Gilian beret, because I got what I thought was the flu with the common aches and pains, but after the flulike symptoms subsided, my arms and legs never regained their strength. It was as if I did 50 squats every second....

I also started noticing some very scary things. For instance I would leave my house and I drive so much, but I would leave my house and get to the corner and all of a sudden for a split minute would feel like I was lost. It started scaring me. Then I would get out onto the highway and with all the traffic, bright lights, honking horns and what have you, it would throw me into a frenzy. I couldn't tell sometimes if a light was red or green and had to doublecheck like 50 times, I was always very hypervigilant and took all the back roads and finally I just said forget this and did a time of research and found a neurologist who strictly deals with neuro lyme disease..

I first tested false-positive through lab core then the neurologist sent my blood to MD labs and I tested CDC positive with Annaplasma? All other co-infections so far were negative. We just did a third one with hygienic's and a CD 57 but haven't received those results yet. I basically told him that let's forget the antibiotics and move street to an IV and he agreed... Looking forward to getting those results back.

Back to the pick line or heppa lock.

I'm not sure really what the difference is with a pick line and the other that you mentioned, and I'm not even sure what I'm getting, she told me what it was, but Lord knows if I can remember and it was just this afternoon. All I know is it will be moved around to a different part of the body in those 30 days. Insurance is covered. But I do have to dish out 1400 because it didn't cover 10% of the medical supplies. But I'm okay if it helps my life.

The company said they would take payments and they were wonderful.

Has anyone seen the video limelight with the Olympic snowboarder? I read the story on her and she had no neurological Lyme and it shows her explaining IV and how wonderful it worked

Post Edited (Lymechic2014) : 4/12/2014 1:25:31 AM (GMT-6)

topdocumentaryfilms.com/under-our-skin/

Documentary on Lyme, See Video

I recently started IV abx and am starting to feel some improvement. I'm still herxing pretty bad but I've had more good days than I ever had on 5 months of orals. Good luck!

Picture of health, when did you start IV, and how long have you been you sick?

That's what I have, lyme, Bart and Babs like many of us here. I am supposed to get my picc soon. I'm very nervous, I'm herxing badly just from AL complex.

Hi Sue-

I live in an area that is dominated with the disease and yes, surrounded by many cities like New York city, and Philadelphia, but it just so happened that the psychiatrist that I had been going to four years prior to my diagnosis, treats Psychiatric lyme and a member of illads.. The neuro is as well and i googled

Insurance paid for my pic line, and I'm 7 days in and I still feel the same :( . I also know that I have bar and that needs to be addressed.