My daughter had been on IM Rocephin, 800mg Ketek and Mepron. Had horrible head pressure

eye pressure and ear pain so Dr. H had an MRI done. He took her off the Rocephin and Mepron last week.

He called last night hadn't seen the MRI yet, but took her off the Ketek now for 4 days then wants her back on it but only 400mg until a week from Tuesday.

Any ideas as to why he did that? I am SOOOOO confused.

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ICEY

Sorry you and your daughter are going thru this. Did doc tell you the reasoning behind doing this? Just a guess, but it may be to back her off the meds because perhaps a herx (dieoff) reaction is too much and is causing the severe symptoms and inflammation.

Think of it as riding a wave: you have to be
exactly on top of it or you'll get pounded by
it. its a lot of backing up and starting slowly again....there is a real balance that is attempted.

Someone here told me once that slow and steady
wins the race and that the meds should kill
the lyme etc without killing you. So sometimes
its good to back off and allow the body to recover.

You may want to have your doc explain things
better or tape record the phone visit so you
can remember everything that was said. It gets
overwhelming and its easy to forget important things later.

Hope this help....sorry I can't do more...
Hang in there!

-pip

one talking to Dr. H. but I try to let 24 year old daughter handle this on her own as

much as possible. He told me what he wanted me to do when I was giving her injections of recephin, he was VERY careful to tell me exactly what to do.

She says he told her she was really sick and she was a mess and then told her what he wanted her to do........LOL, she is a mess alright!!

He did tell her that he had lots of Ideas for her. She is to call him in 10 days.....he is taking a much needed vacation, I am sure!!

We fly into Reno on the 22 of Aug to see him again.

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ICEY

A good friend who has a 22 year old daughter with lyme advised me or my husband to be in the room when seeing the llmd.

We let our 22 year old go three months himself to his appointments and that caused miscommunication. He played down his herxing/symptoms and forgot things to ask/tell.

My friend said to explain that it is best to have an advocate and someone to take notes.......

We see this fairly often.

If it helps....

I would have done the same.

But I am NOT a doctor... just been there in her shoes and have seen others who have.

I went back to my LLMD since I felt I had no choice. I was ok one month - then the next on deaths door.
My LLMD gave me Ketek, Sulphur, Mepron, and Plaquenol. I herxed so bad for 16 days that I wound up in the hospital emergency room thinking I was poisoned and had sepsis. I was further rushed to the emergency room 1 other time because I had stiffness in my neck and chest muscles, ribs, etc. and I felt like I couldnt breathe. The doctors said I was getting ari concentration.

We stated pulsing the meds including the Ketek, and herx started again, and I became suicidal. I pulsed again, and stated with just sulphur and then added Ketek ( no Mepron yet or plaquenil) and herxed again. My whole body started twiching, felt like I couldnt breathe again, ( I also have it in my throat box and ridge of my nose) not to mention my face as well.

Ketek is a VERY strong drug, and not everyone can tolerate it. You amy be able to tolerate it later as sprirchete level is lowered, but it may not be the best drug to start early in treatment with. I have had Lyme for 16 years and was high functioning for 6 years, but screwed myself up by not going to the doctro earlier- and not taking enough doxy to keep my disease under control.

People can yell at me- but my worse fear of relapsing happened, and it hit me like a tanker. I did not feel any of the symptoms that I came out when I herxed. I had some problems during the year, insomnia, waking up gagging sometimes, but thought it was normal stress related items.

I would not take Ketek for your daughter right now. I am currently trying biaxin with Mepron, and plaquenil. LLMD says that it will take longer to work, but I cant live on a Ketek herx because I thought it would kill me.

when she was "offically" diagnosed? Then he added Mepron for the Babs and then the Rocephin shots.

Took her off the Mepron and Rocephin last week. Is starting her back on Ketek on Wed. but only 400mg.

Maybe the slow and steady? He told her in 10 days he had some other ideas for her. Such a nice man and VERY genuine. Mentioned a total body cleanse.

He hasn't gotten the MRI results yet.......seem this is a common issue for Lymies.

Feel so bad for all of you.

HUGS,

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ICEY

I know that I couldn't deal with those doses and work fulltime and take care of my family.

My activity level and energy level is slowly increasing bit-by-bit, every month since last Nov.

With a 20-something yr old child,I would want to sit in on the consultation, but would just listen. I would want to be aware of the treatment process and the llmd's theory/progress on my childs illness. (but, my daughter's not even 7 yet).

Sounds like she had a lot of meds to work with and the herxes are very disturbing and frightening. The doc is doing the right thing.

I'm glad your daughter's doc is taking a look at her MRI shortly and giving her a little break in meds till he knows what's what. The "exploding head" thing can be pretty hard to bear.

If she doesn't mind you coming along to ask questions/take notes, I'd be stowin' away on her next appointment fer sure!

Let us know how she does, please!

quote:

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Originally posted by valymemom:
A good friend who has a 22 year old daughter with lyme advised me or my husband to be in the room when seeing the llmd.

We let our 22 year old go three months himself to his appointments and that caused miscommunication. He played down his herxing/symptoms and forgot things to ask/tell.

My friend said to explain that it is best to have an advocate and someone to take notes.......

---

I definitely know how important this is. I have been to very few doctors appointments on my own and always feel more comfortable having someone else there to listen and absorb the information I can't grasp.

However, I can say that I much prefer whichever parent who is with me to not talk much during the appointment. I prefer for them to be more of a silent observer. They don't know nearly as much about Lyme as I do and they can't tell how I've really been feeling so I prefer for them to leave that up to me. My dad's great with that and I prefer having him take me to my appointments, my mom has a little harder time not bringing things up that I don't need to talk to the doctor about.

It is rough being a young adult, technically supposed to be independent and in charge of our own care, but still having to rely on parents for so much. But I guess it's just the way things are and I'm thankful I have parents who are understanding and supportive.

Peace and healing,
Annie

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