We are experiencing a glitch in the system. My Father-in-law has the highest titers on the WB that my lyme doc has ever seen. He also has Normal Pressure Hydrocephalus(NPH). We feel there is a connection. There are several documented cases where NPH has resolved upon antibiotic treatment. He has had 5 days of IV treatment so far. As it is we are driving 100 miles a day to reach him and take him into the city for IV therapy at a hospital cancer unit. Our doc gave us a script for getting the IV at the emergency room but we found out today that they said they don't do that. We are still waiting to hear the final word.
My question is if 2 days were skipped due to this problem...would it affect his overall outcome? A friend told me that she pulsed the IV. Anyone else heard of this?
Posted by dulcamara (Member # 5691) on :
quote:Originally posted by daystar1952: My Father-in-law has the highest titers on the WB that my lyme doc has ever seen. He also has Normal Pressure Hydrocephalus(NPH). We feel there is a connection. There are several documented cases where NPH has resolved upon antibiotic treatment. .......
My question is if 2 days were skipped due to this problem...would it affect his overall outcome? A friend told me that she pulsed the IV. Anyone else heard of this?
I don't know too much about pulsing IVs, but borreliae are supposed to divide pretty slowly, so skipping two days probably won't be a tragedy. Have you tried to get in contact with your LLMD and ask him or her?
Posted by Deb (Member # 4393) on :
Check your e-mail.
Posted by lou (Member # 81) on :
I believe Dr. B's guidelines mention this. See newby links. On this basis, I pulsed IV rocephin for 5 days on, 2 days off in order to try and avoid gallbladder problems.
Don't know what drug he is on, as it might depend on the drug. Zithromax, for instance, stays in the system pretty well.
Posted by daystar1952 (Member # 3255) on :
He is on Rocephin. It's good to know that the treatment wouldn't totally be lost if he missed a couple days. I just called the emergency room myself and the head person said they wouldn't deny him treatment ...so...I guess we are on. Thanks so much for the info and experience
Posted by lou (Member # 81) on :
Is he on actigall? If not, would be good to ask your LLMD. This drug seems to fend off the gallbladder problems that are very common with rocephin.
This is a prescription drug.
Posted by arg82 (Member # 161) on :
I pulsed Rocephin last summer - 1 gram twice a day four days a week. Pulsing can help reduce the side effects and may actually help prevent the bacteria from going into the cyst form where the antibiotics can't kill it.
I didn't have success with this treatment because my body had a lot of trouble tolerating the drug, but I do know of others who have been helped by this.
Have you looked into getting a nursing/infusion company to handle the treatment? It sounds like you're travelling a logn way for the treatment and it could be done at home.
the fact that he has high +'s on his western blot could just mean he has 1. just been infected and his immune system is working really hard to over come it with buillding strong antibodies, or two he just has a very strong immlune system that is fighing hard and building strong antibodies...
the amount of +\s does NOT indicate how sick he is. some of our sickest people on here can't even show +\s anymore because their immune system is show shot from years of being sick their immune system is too tired to build antibodies anymore so no + show up at all...
find a good llmd who really undertands this..ok I have no doubt he's sick, and there is a connection..I just don't want him overtreated etc..
