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lillimul..how are things going

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Posted 1/3/2009 9:18 AM (GMT -6)
Hi Leslie-I just wanted to wish you and your husband a Happy 2009 and hope that we all can find the road to recovery. I am very happy to hear you are doing so well off the abx. It just seems as though I have been on these meds long enough and if I am not well then I don't think it is going to happen.

I have been going through I guess a Rocephin herx. The fatigue was brutal as I couldn't even leave my bed. It was exhausting to walk from one room to the next. I am on day 11 of this and it is wearing me down. I want to quit treatment. My picc I believe is bad and since my doctor here was on vacation last week they couldn't help. So now I have had extreme soreness for 2 weeks but am seeing him on Tuesday. I am just not sure what I want to do.

Has your husband had any improvement on the Rocephin? You know I still have in the back of my mind that something else is going on and maybe I do just have CFS which of course abx will do nothing for. My right leg has now begun to burn, twitch, have currents running through it.

I spoke with John briefly last weekend and he just told me to detox but I am not sure he realized I was in such rough shape.

I hope your husband is feeling some glimmers of hope in his recovery. I really feel as though I am at a dead end. I will keep you posted on what happens and what I decide.

My son is getting married in October (we just found out) and I really wanted to be well. Take care and please keep in touch.

Kim

Posted 1/3/2009 11:22 AM (GMT -6)
Kim,
I've been thinking of you and wondering how you were doing. I hope you were able to have a nice xmas with your sons home.
We also had both our grown kids home for xmas which was really uplifting. Our daughter is still home for a couple weeks before she heads back to the midwest for her last semester of college. Congrats on your son's engagement! Hopefully you'll be feeling better by next October.

Here's the update on my husband- he's now on his 11th week of rocephin. the first 2 months were absolutely brutal fatigue and cognitive symptoms although he also became pain free (headaches, muscle and joint pain, improvement in neuropathy) after about a month. He experienced some depression which we thought was a herx as well because of the way it manifested.
Around the 7th or 8th week of rocephin, the fatigue and cognition started to improve and he started feeling better (but not as good as he felt prior to treating lyme). He had a couple of weeks of that improvement before Dr. H started him on minocycline and tindamax in addition to the rocephin. Minocyline brought back herxes(aches, severe fatigue) and then he got a flu bug on top of the herx. John took him off the minocycline about a week ago and he's just starting to be functional again. We think he'll probably be on the rocephin for months more and it does seem to be helping finally. Again, he's still not where he was prior to treating lyme where he was able to work 25 hours a week. In my husband's case, we're sure he has lyme, not just CFS- because he immediately herxed on Doxy, re-experiencing all his worst symptoms from early in his illness and also his testing came back cdc and igenex positive and his bartonella was very high (160). He/we feel that treatment is worth is though sometimes do question what pandoras box we opened by treating this. What could happen though by not treating it- other worse illness down the road....also he still periodically got disabled by his symptoms even when not treating the lyme....

Are the symptoms in your leg a herx? Those sound like symptoms of lyme(radiculopathy?). How long total have you been on the rocephin? Did you get worse/herx when you started abx? From our end, we wonder whether a lot of CFS has a root in lyme disease. We still remember when my husband first got ill almost 22 years ago, when I was 6 months pregnant with our daughter-
it started with a flu with high fever and then extreme fatigue, body pain, headaches and neuropathy. He always called it "the flu that never stopped". It would periodically cycle with remission and relapse. I understand how confusing it can be. I guess our confusion isn't so much about what diagnosis it is, but whether, as i wrote above, we opened a pandoras box by treating it....

I would think that you are starting from the beginning again with the rocephin so it could be 2-3 months before you see improvement again like you had before. I'm sorry you're going through so much illness and discouragement. I know it's hard- my husband has very similar symptoms and many days that he is bedridden.

Please keep in touch. I wish you better health in the New Year.

Leslie
Posted 1/3/2009 12:45 PM (GMT -6)

Leslie-Thank you so much for the update..I am at the point of total discouragement and just not sure what to do. I am almost on week 4 of Rocephin and the fatigue has been brutal. I was fine the first two weeks but at day 15 it hit full force. I have never at any point in my illness experienced it this bad. I guess I am comparing the last time I had the Rocephin and I never felt like this. I am also taking oral Zithro so I am not sure that is playing a role in this.

I agree that I do not feel as well as I did before treating the Lyme. I now long for those days when I felt at 40 percent. I am not sure why I question the diagnosis as my bart titer was 180. Maybe it is just because I feel so terrible again I start going over things in my mind. When I started treatment two years ago I herxed within a week so that should mean something. Although oral abx never helped me improve any.

I have always had the leg symptoms from the very beginning. It was actually my first symptom other than the "flu". It did resolve last year by about 75 percent but never quite went away totally. John said that sometimes Lyme gets into a certain muscle group and just lives there. There is actually a name for it but can't remember what he told me.

I was suppose to start on IV Zithro but John wants to wait until I can tolerate this better. Reading your post does give me some encouragement. Maybe I am just hoping for a miracle too soon. I am unable to work right now too which hadn't happened to me before. When I get down I will re-read your post and it will give me the inspiration to keep on with treatment.

We did enjoy the holidays. I did as much as I could but spent alot of time resting. It is always nice to see the boys and spend some time with them. Keep in touch and I will too. I hope for much healing in 2009.

Kim

Posted 1/3/2009 4:41 PM (GMT -6)
Kim- Your story from the beginning sounds so similar to my husbands! I appreciate your support through all this. He also didn't experience improvement on months of oral abx or bicillin shots. It was at least 2 months into the rocephin that he began to see some improvement. My husband's fatigue on the rocephin was also brutal for at least 2 months- he couldn't even drive at all during that time. I hope you keep the faith, stick with treatment and experience improvement soon. You've given me hope many times. We all need to give each other inspiration....I so value the connection that we've made on this forum.

Glad you enjoyed the holidays and being with your boys. Definitely, lets keep in touch and wishes for healing in 2009.

Leslie
Posted 1/4/2009 6:54 AM (GMT -6)

Leslie-Thank you again for all your support. I know my husband will not let me quit treatment so I am sure I will just have to hang on. I will probably have to get the Picc pulled on Tuesday as I am still having lots of discomfort with it. I am not sure if they will replace with another or go to a chest port.

I was thinking back to when I was first on Rocephin last year and I was not on any other abx to kill the different forms of Lyme. I am not sure why but I was just on IV, malarone and rifampin. Maybe that is why I relapsed. I will certainly talk with John about this when I have a phone consult in a few weeks. I just really can't make the trip out there right now.

Yes I hope for much healing and a happy 2009. Please keep me posted on your husbands progress and if he changes any of his meds. Take care.

Kim

Posted 1/5/2009 6:52 AM (GMT -6)
Kim,
Good luck with the PICC tomorrow. My husband's original PICC started oozing and leaking after less than 2 months so he had to have it pulled but had it replaced the next day in the other arm. I know someone who switched to a chest port after going through two PICCs and is very happy with the port. I'm glad to hear how supportive your husband is to your continuing treatment. Take good care,
Lesie
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