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lillimul
Regular Member


Date Joined Jul 2008
Total Posts : 104
   Posted 10/24/2008 2:38 PM (GMT -6)   
hi! i saw your posting on another topic and wanted to say hello and that i hope you get your rocephin soon!
it took a month to get all the ducks in a row with insurance, doctors, picc line- but my husband just got his picc line and 1st dose of rocephin yesterday. we saw dr. h a month ago and he said my husband should be on rocephin and changed around a lot of stuff. we're hoping this helps him turn the corner but right now he is just wiped out.
how are you doing with sleep? my husband's sleep study came back unremarkable- he had a few apnea episodes but not enough to get treated. he too has days insomnnia and then hypersomnia. cognitively and energetically, i am really hoping the rocephin helps him. his fatigue is so disabling a lot of the time. we see john in a couple of weeks to follow up.
i seem to be coming out of a funk where it was hard to tell what was lyme or menopause/hormones- may be ready to come off abx soon- but wonder if they do testing first before coming off abx? i've been on abx and antimalarials for 7 months now since switching to the llmd. was never sure if i had bartonella since i didn't test positive for it but tested positive for babesia.
i am hoping i can really nip these bugs. i'll ask john when we see him.
hope you're doing ok and that things fall in place for you to get back on IV.

ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 10/24/2008 4:00 PM (GMT -6)   

Hi lillimul- I hope the Rocephin works well for your husband. It might take some time but I am sure he will have positive progress with it. My doctor here in NH called John and recomended that I go back on Rocephin because I was not having any luck with the zithro/doxy combo. So John called me at ten in the evening-I was actually in bed and wanted me to try mino/zithro first. I just said to John that I would but so far none of the orals I have ever been on done anything. He said he wanted to discuss it with Dr. H when he came back from the conference in SF.

So I have an appt. Nov 14th with John and I hope they will agree. I will have the PICC or Port put in here in NH if I can go back on. Tell your husband to hang in and he will feel better. The fatigue is disabling for me at times too. Each day is different and I never know how bad it will be. It makes it very hard to work. My sleep is okay. I take lunesta with melatonin and sometimes a benadryl. I am sleeping good right now but that could change quickly. My doctor here gave me a prescription for Rozerem but I haven't tried it yet.

I am glad to hear you are doing better. John has me on malarone even though I didn't test positive for Babs. I have been on for almost a year. I just had all the co-infections retested to see if the Bart is gone away. Maybe if you are feeling lots better you could go on herbals for a while just to make sure. I tell you if it wasn't for my chronic fatigue I would be doing pretty good.

I will let you know how things go at the appt. Yours doesn't happen to be on the 14th does it? Mine is at two thirty with John.

Take care and keep in touch!


lillimul
Regular Member


Date Joined Jul 2008
Total Posts : 104
   Posted 10/24/2008 6:04 PM (GMT -6)   
Hi KTP- it's good to hear from you. I'm in the state next door- Maine. Sorry you have to wait till mid November. I remember your saying many times that rocephin is the one tx that really made a difference for you. Does your doc in NH take care of ordering the PICC or Port? Is your doc in NH also an LLMD?

We'll be going to Hyde Park on Nov. 4th(already did our absentee ballots) and will be seeing John. I think Dr. H is in the office that day though. Maybe one of these days our appointments will be on the same day. We have another appointment scheduled on Dec. 11th with Dr. H.

Glad you are sleeping better with lunesta, melatonin and benadryl. I also take lunesta with 1 mg. of clonopin as i have sleep issues. I've had chronic persistant tinnitus for almost 4 years(not lyme related) so the noise in my head disturbs my sleep. My husband takes lunesta and some supplements but is having sleep issues again and talked with his doctor here today.

I'll be interested to know if you get back on the Rocephin. Chronic fatigue (which I so understand through my husband) is disabling. Please keep me posted on how things go for you! Take care!

ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 10/24/2008 6:56 PM (GMT -6)   

Hi lillimul-my parents live in Maine! and my son went to college (Bowdoin) there. John wanted me to wait a month to see how the meds were working out plus he wanted to make sure Dr. H was in the office that day. I am suppose to fax John next week and let him know how I am doing.

My doc here in NH will take care of ordering the PICC. He would have done it last week if I had been given the okay but since he is the one who sent me to NY in the first place then I have to wait. My doctor is lyme literate but that isn't all he does. He went out to the Lyme conference that was in SF last weekend. He is the one that finally diagnosed me..and does understand the disease well. He also suspected thyroid and adrenal problems as well and he is treating me for that.

I will let you know how things work out for me after my appt. I try to only see John because I feel more comfortable with him rather than Dr. H

Keep me updated as well and have a safe trip out to NY

Kim


lillimul
Regular Member


Date Joined Jul 2008
Total Posts : 104
   Posted 10/25/2008 7:42 AM (GMT -6)   
hi kim,
Bowdoin is a great school! My niece graduated from Bowdoin in '07. I just had dinner in Brunswick with friends this week!
Great that you have a really good doctor to work with near you as well.

I'll keep you updated. I also put a post up about diarrhea with rocephin as my husband is struggling this morning. If you have any suggestions, can you let me know?

Leslie

ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 10/25/2008 7:52 AM (GMT -6)   

Leslie-I posted under your other topic..When my husband gets home I will ask for suggestions from him.

My son graduated in '05. My parents live in Woolwich..it is so beautiful up there.

Kim


lillimul
Regular Member


Date Joined Jul 2008
Total Posts : 104
   Posted 10/25/2008 12:47 PM (GMT -6)   
thanks for your suggestions on the other post- we need to order the VSL3. Dr. H had given us the website but we hadn't gotten it yet.
just got back from whole foods with a heavy duty probiotic. Woolwich is beautiful! we're in Portland.
Leslie
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