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lillimul did you make it to NY for the appt.

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Posted 12/14/2008 7:58 AM (GMT -6)
Hi Leslie- I am using a borrowed computer since we have been out of power for almost 3 days now. It is a mess here and I guess 92 percent of Rockingham county is out of power. On our street alone there are 5 power lines down in the roads and on driveways. Did you get the bad ice storm in Maine too. I know my parents are out of power too. Luckily we have a generator which we have been sharing with the neighbors so they can at least take showers.

I had my Picc put in on Monday and it is terribly bruised. The doctor must have hit a vein with the novacain. My husband had to change the bandage since our insurance hasn't been approved yet. I have started the Rocephin and feel nothing yet. I have to contact John sometime this week and let him know so we can start the Zithro.

I really am writing to ask if you made it to NY and how the appt. went. Whenever you have a chance please write so I can know how you are doing and if your husband is feeling any better. Take care and I hope you didn't lose power up there.

Kim

Posted 12/15/2008 6:37 AM (GMT -6)
Hi Kim,

My husband's appointment with Dr. H was on the day of the ice storm and it was freezing rain in Dutchess County too. the appointment was really helpful in looking at improvement in his body pain, headaches and neuropathy and the remaining issues of severe fatigue and cognitive brain fog stuff. We left with some changes and a plan. Dr. H added Minocycline(and he took out Septra) and Tindamax to the Rocephin and Zithro along with a strict hypoglycemic diet. In a month he may add Rifampin. Are you taking oral abx along with Rocephin? I wonder sometimes if he's going to be fatigued as long as he takes oral abx, but there is improvement cognitively since the Rocephin. His fatigue isn't as bad as it was initially with the Rocephin but it comes on very suddenly- like narcolepsy, when it does.

The drive back was long in the ice storm the whole way. We lost power only for a few hours, but my office lost power for 2 days and there are still some other pockets in Portland without power. The storm was a mess. Do your parents in Wiscasset have power back yet? It sounds like your area got devastated with the power lines and trees down....great that you have a generator yet what a mess this storm was! I hope you get your power back soon.

Sorry to hear you got bruised and I hope you start to feel better on the Rocephin soon. Please keep me updated and I'll check in with you.
Thanks for thinking of us and writing. Take good care.

Leslie
Posted 12/17/2008 11:53 AM (GMT -6)

Hi Leslie- We just got our power back last night. Much of the town is still without it. Today it is sleeting and snowing.. I am happy you could make it out to your appt. I think I am suppose to see Dr. H next time but I haven't made an appt. yet. I have to get in touch with John and find out when he wants to add the IV Zithro. I am currently taking Malarone, Plaquenil and oral Zithro. I am not sure if he will change any of that once I talk with him. I definately already am feeling some lessening of the fatigue and it has only been a week. I worked the whole weekend and did great. I think there will be ups and downs but I am very encouraged.

Did Dr. H give your husband a time table on how long he might be on the Rocephin? I was on oral Mino for a short time but it only made me dizzy and not much else. I have never been on Tindamax. I just really feel that the abx causes added fatigue and loss of energy. Like I had said before I started abx I definately had more energy. I will give the Rocephin a good try (John says probably a year). Hopefully this time it will stick cause I have had no luck with orals.

I hope your husband continues to see improvement. I will let you know when I start the zithro. I did want to ask are you using IV bags for the Rocephin. Last time it was in a syringe but since we are buying it ourself it is much easier to mix it this way. Also why did Dr. H put your husband on the hypoglycemic diet? Maybe that is something I should be doing too. I was suppose to have a hypoglycemia test but never did.

My parents lost power for 3 days but they had a generator so they at least had heat. Keep in touch and I will too! Take care

Kim

Posted 12/18/2008 7:02 PM (GMT -6)
Kim- great to hear that you are already responding to the Rocephin. Dr. H didn't indicate how long my husband will be on the Rocephin yet it seems like he'll be on it a long time. His PICC line starting leaking and needed to be replaced on Tuesday so he's thinking about getting a port if it will be a long time. He's still struggling with fatigue and now depression along with brain fog that comes and goes. It's hard to tell what's what and if he is reacting to the minocycline which he started on Monday. He also is taking oral zithro, plaquenil and mepron(all of those he's been taking for a long time) He was so much better and able to work before treating the lyme- I know its a long haul yet just hope that treating with the abx is the right decision in the long run. I think it is... I trust Dr. H and John and their knowledge of lyme. It's steps forward that seem promising and then slippages.

My husband was put on the hypoglycemic diet because of the suddenness of oncoming fatigue, particularly in the afternoons.
More big snow storms coming- at least not ice! Take care, lets keep in touch.
Posted 12/19/2008 7:31 AM (GMT -6)

Leslie-I am very interested in the diet. I also have fatigue that comes on suddenly and I just have to lay down. It can happen anywhere. I will mention it next time I got out there. I think the Rocephin kicked in yesterday. I was sooo tired I couldn't do anything. I feel the same today. I am thinking maybe I should have waited until after Christmas to do all this. My sons are coming up for 5 days and I only see them a few times a year. I don't want to be in bed the whole time.

I know that Doxy made me extremely exhausted which is a side effect. The mino just didn't do much either. I am faxing John today with an update since I just got my blood work done. You know my doctor here wanted to put in the chest port but John said he wasn't really comfortable with them since you are prone to infections. So we agreed to start with the PICC but I am figuring I will eventually get a port since I am also looking at a year or more.

I question the abx treatment all the time but I have to trust that it is what will get me well and I can't imaging living the rest of my life feeling as I do now. I will keep you posted...yes more snow on the way. We are looking at 8-12 inches yikes and more on Sunday! Have a nice weekend. I am suppose to be working both days but we will see.. Take care

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