Kind regards
Jeannine
 

I know this is difficult. Is there a reason to have a neurologist if you have a good llmd? Just wondering?

Anyway, email me if you want , maybe we can share resources.
 

Check with your insurance company. They may pay to have a visiting nurse or home health care worker administer the antibiotics.

My husband had his first 4 or 5 IV's done in the office by his primary care provider and then I did the rest at home myself. I had no medical training until my huband got sick.

Just about every IV I had to stop during the treatment and give my husband IV Ativan to stop bad shaking/"seizure-like" episodes.

I have to do this 4 - 6 times a day anyway, so after the first couple of IV's it didn't worry me too much because the episodes weren't any different than his usual episodes.

I mixed the Rocephin in D5W instead of sterile water to help it cross the blood brain barrier easier.

If you are worried, couldn't your husband help give you your IV's ??? Or try to find a Dr. who belongs to ACAM to use as your primary care provider.

My husband has never found a regular neurologist who believes his Lyme diagnosis -- he does not have a positive Western Blot although he does have changes on his brain MRI's.

You don't really need a neurologist if the insurance will pay -- a good primary care doctor is more important.

The important thing is to start slow. My husband started with either 125mg or 250mg per IV and built up to the 2000mg (2 grams) dose quickly. We only did IV's 6 days a week.

If you trust your LLMD you don't need to be overly scared of IV meds. My husband has had PICC lines in for about 2 years now with no major problems.

Good luck.

Bea Seibert

[This message has been edited by seibertneurolyme (edited 07 December 2004).]
 

I think you need to give meds more than 1 week before a change, especially going to IV.

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Sorry you are having a rough time.

Lyme is a disease of the central nervious system, so all lyme is neuro, some people just have fewer symptoms.

I did 2 three month courses of abx before I did IV rocephin, which was not followed up by orals so I ended up on long term orals anyway. BTY I did the PICC at home by myself, it really was no big deal.

I have improved a lot in a year and a half. Long term orals are proving to be effective for many people.

Some people have to start out more slowly on the abx and build up to the proper doses.

Mel
 

Check your e-mail, I have sent you the name of a Dr. not too far from you who may be of some help to you.

Please stay on orals for awhile to see if they make a difference. My husband had 5 months of IV followed by orals. He crashed after 5 weeks off the IV and has been sicker than ever.

Let me know if I can help with any more information. You can send me a private e-mail.

Wizard
 

How long has your husband been sick? 5 months of IV should clear up most of the lyme, shouldn't it?
 

a spinal tap has a much lower yield (approx 7%) than an a elisa blood test (30%) which is lower still than a western blot (50-70%).

it is rare to get a positive diagnosis for lyme disease from the csf of a spinal tap. a spinal tap is best used for differential diagnosis, like MS.

an MRI also would not likely diagnose lyme disease. an MRI may show lesions on the brain, or white matter, but usually when those are found they are thought to be indicative of MS when read by a neurologist.

so your stuck in a loop.

the rocephin can be very good, but should be taken with orals concurrently.

the ceftin is a antibiotic in the same class as rocephin. if you up the dosage you may get the same amount of antibiotic desired as the rocephin would administer into the blood stream, and the cns.

best of luck and don't give up!!!
 

[This message has been edited by Paisley (edited 09 February 2005).]
 

If I had the whole shebang to do over, I'd treat for babs, then smack the Lyme with minocycline, if I had a lot of extra time to herx. It's a lot safer than rocephin, cheaper and more effective.

Omnicef is also a strong alternative to rocephin, and flagyl or tini will help with the Lyme cyst form. You can never rely on one abx as a cure-all. It usually takes a specific combination to work.