I am not sure how much help I can be but since your husband and I share horrific fatigue as a primary symptom I thought I would try. I know when I started abx they did nothing at all for me and I actually felt worse on them. When I was diagnosed with CFS I still worked although part time and I was still running. I was told to just do what you can and maybe it will go into remission. Okay that was what I would do. Then I started abx and within a few months could no longer run-had to cut my hours again and just really felt horrible and it wasn't due to herxing.
I began to question the Lyme diagnosis since I didn't have a positive test just some activity on 4 bands. Then I was tested for co-infections and came up with the pos bart titer. I guess I am trying to say that I only felt better on the Rocephin. Orals did nothing but give me side effects and make me feel really bad and I had even less energy. I do believe alot of the times it is side effects we have and not herxing. I have basically had it with orals because they have done zero for me.
I think if your husband can keep on the Rocephin a few more months he will see improvement. Sometimes it can take months especially where he has been sick for so long. I was only sick 2 years before diagnosis. I think when you see John you could talk with him about this. I am so sorry your husband has declined even further and sometimes I feel like I am heading that way too.
I had a bart rash on my stomach a couple days ago and took a picture of it for John. I am not even being treated for bart right now and that scares me too because I was on Rifampin for 8 months and apparently it isn't gone. Sorry I can't be of more help but I totally understand how you are feeling. Keep in touch okay.
Leslie-Please let me know how the appt. goes. I sent a pic of the bart rash to John because I am truly concerned that it is still a problem. I didn't know how to describe it to him. I haven't heard anything as of yet. I still don't have the appt. for the Picc line. I spoke with my doctor here yesterday and was hoping to hear back today. I feel like I am really slipping backwards again. We will be mixing the rocephin ourselves since our insurance will not cover it. I will be pulsing Zithromax too.
The fatigue is so horrible all the time. Some days I can work through it but others I find myself laying in bed unable to do anything. Most days I can't read or watch tv because I am just so tired. I really think the Rocephin will help your husband if he can keep on it. John has basically told me I will be on it a year or more. So it just might take more time for your husband to really feel better. It definately helped tremendously with the fatigue. There were days when I didn't have any at all. There is hope.. Sometimes I feel as though I was better off before the abx and taking them just stirred it all up. I will be very interested to hear what Dr. H has to say. Please take care and keep in touch.
Hi Leslie- Yes I did try glutathione I think in April or May. It didn't do a thing for me. I believe I had 12 treatments and my doctor said I would have noticed a difference right away if it was going to help. You might ask Dr. H about pulsing another abx along with the Rocephin. I am not sure why they have decided to have me do that.
We had a nasty letter from insurance also but you know they don't want to spend money on people with Lyme. That is what it all comes down to just plain money. It is a shame when we have to mix our own medications and travel distances to get treated.
I will keep you posted on what is going on with me. I was suppose to see Dr. H at the end of the month but since I don't have the Picc yet I am not going to make the appt. I would rather see John so I might just make an appt. with him instead. Have a safe trip out to NY. Things will get better..we have to believe that.
Leslie-Just wanted to update you on things. I am getting the Picc in on Monday and what an ordeal that was! They wanted to put it in without using flourosocopy and I refused to have it done that way. Did it last year and developed phlebitis 4 days later and had to have the line pulled. My doctor here had to get on the phone with head of radiology and convince them this is how I must have it done. I was back and forth on the phone all afternoon trying to plead my case. Just what we all need when we aren't feeling well..more stress.
So I will be starting up the Rocephin on Monday the minute I get home! Dr. H's office did call yesterday about the rash. I guess John had given the picture to Dr. H to look at and he said he couldn't be certain it was from bart. Personally it looks like bart to me cause I have seen pictures but who am I to argue with him. I will talk to John about it when I see him again.
I will be thinking of you next week at the appt. and keep in touch to let me know how things are going.