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» LymeNet Flash » Questions and Discussion » Medical Questions » Update on my Dad with ALS/Lyme--need advice

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Author Topic: Update on my Dad with ALS/Lyme--need advice
Member # 6962

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Hello everyone--

Hello especially to Tincup, ALSLYME, Lymetoo, mbroderick, mgrimm, and and everyone else who's been so supportive--you guys are fantastic!

Dad just completed 6 weeks on IV Rocephin (dosage was 2 grams/day.) He had one good day, and after that went back to feeling crummy. He feels it did nothing for him. He is a little despondent at the moment.

His physical condition now is as follows:

Breathing problems--can't get enough air into his lungs. His blood oxygen, though, is 98%. He uses a BiPap machine at night and during the day for naps. He gets tired out very easily and feels winded after dressing, eating, walking upstairs, or just walking across the house. He occasionally uses a walker.

Muscle weakness and atrophy--He can't lift either of his arms higher than his shoulders. Lost a lot of fine motor control in his fingers. His grip is weak. Great difficulty dressing himself. Good news: His legs are still quite strong, although they are very thin.

Weight--Dad is 5 ft 7 and now ways about 129 lbs (down from about 150-160 eight months ago). His blood sugar was at 58 and should be at 100. He eats a little bit every few hours, but has little appetite and feels full quickly. He has not continued to lose weight, he just can't seem to put more back on.

Dad suffered from colitis and irritable bowel symptom most of his adult life. It hasn't been as bad since he retired more than 10 years ago. He may have really bad mold problems in his house, where he's lived for about 35 years. He is 75, but he looks about 55, and he was an active long-distance biker, downhill skier, and gardener. He was in excellent physical shape.

Well, Dad saw his lyme doctor on Thursday. His doc is very conservative and refused to continue with the IV antibiotics. So, he is through with that doctor. We have plenty of names of other LLMDs in this area, so that's not a problem.

From reading this list, it seems like 6 weeks is not enough time to be on the IV Rocephin.

Does anyone have any advice as to where he should go from here? Thanks!

Hope everyone is feeling good today (and everyday).

Posts: 12 | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (5K+ posts)
Member # 81

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Has he been checked for co-infections? Babesia can cause anorexia. I had a problem with weight loss but have since gained it back. Also, a lot of people with lyme have bartonella too. Really think he should get good coinfection tests.

Rocephin works for some people. Maybe a longer stint would help. On the other hand, it doesn't work for everyone. IV zithromax was good to me. Generally, two drugs work better than one. Two that work synergistically. A good LLMD will know which ones to combine.

Good luck to you and to him.

Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
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Member # 6771

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I heard a LL pediatric neurologist say that "One month on IV doesn't touch Lyme".

I'd recommend aggressive, long term IV and HyperBaric Oxygen with a very LLMD.


Posts: 210 | From lalaland | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator

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