Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, May 27, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi chrissy....hope you are still doing well!

    i was wondering if you could tell me where you stayed when you did the IV antibiotics. you mentioned the apartment was clean and nice.

    i have stayed once at the apartments that the beaumont hospital has. they are quite spacious but the locks on the doors are shabby and the beds are awful.

    the travelodge is not very clean and again, has awful beds. i can never sleep a wink.

    i have no more money for the westin or the radisson! lol

    [This Message was Edited on 05/27/2009]
  2. chrissy12

    chrissy12 New Member

    I am doing okay. I just got my labs from Dr. Lerner and my heart came out okay, but my mycoplasma went up again. I don't know what to make of that. I am still feeling better than I did a year ago, so I still have hope to improve. I just talked to another girl that goes with me to MI and she thinks she has turned a corner. She started at about 3.5 and is up to a 5 or 5.5 on some days. She started with Dr. Lerner last May. She has high ebv, cmv and hhv6. She is on valcyte and valtrex.

    I stayed at a place in West Bloomfield called Aldingbrooke. It is about one half hour away. It is really nice. They have some apts that are furnished that they rent out by the month. It costs about 1850 which came out to about 60 a night which is better than hotels. How long will you have to stay for your IV's?? I don't think they rent by the week. If you have to stay for a month, this is a great place!!!! I have never seen an apt. this nice where I live. It is a gated community and very well kept. I think this chain has some cheaper apts. nearby. If I can find my paperwork, I could get a phone number if you need it.

    The other idea that worked for me the last time I had to stay in May was I went to I typed in I wanted a 3 star hotel for $50.00 I couldn't believe it, but I got to stay in the Mariott for 50.00. It was really nice, especially for the money. I think the rooms normally go for around 150. It was 10 minutes from the hospital.

    I have been reading your other thread. I really hope this helps you. You have been through a lot. It sounds like Dr. Lerner is willing to try it. Does he think it could help you??
    You will be in my thoughts and prayers.
  3. ladybugmandy

    ladybugmandy Member

    that was a big help, thanks. i will need to stay 1 night every 2 weeks i think.

    that's odd...i have searched for hotels in the area online a lot but never came across a mariott! once i got an $80 deal at the westin on though but it was a pretty long cab ride from the hospital.

    the only reason i never try priceline is because they do not accept canadian credit cards...but i have an american friend i can ask to book it for me.

    can you tell me exactly which mariott it was? looks like there are a few: pontiac, troy, etc.

    thanks again..this really helps me.

    hope you continue to improve!

  4. chrissy12

    chrissy12 New Member

    I typed in Detroit/Southfield. It is about 10 minutes from Beaumont. You go to 11 mile road and turn right and then it is not far from there. I saw several motels around this area. I want to say a Holiday Inn, but I am not sure. You really can't ask for a hotel, you just say you want at least a 3 star which are all pretty nice. I tried 4 star first and didn't get one. It is definitely worth a try. A friend of mine from here does it every time she goes to MI and it has worked. I did it a few days before I was going which may have helped, too because they knew the hotel wasn't full. Let me know if this works for you..

    Sending you blessings!!!


  5. ladybugmandy

    ladybugmandy Member

    cindy..may i ask you a few questions about your antibiotic treatment?

    which bacteria did you test positive for?

    which antibiotics did dr. lerner use orally before he put you on IV ones? how long did you take the oral ones?

    did lerner have you stop valcyte during the oral antibiotics too or just the IV ones?

    thanks a lot for your help...

    [This Message was Edited on 05/29/2009]
  6. chrissy12

    chrissy12 New Member

    I was diagnosed with mycoplasma pneumonia. My IGG titers started around 600. He said he was going to watch them. They went up over 800 and that's when he says he starts treatment. I started with doxycycline for about 2 months, then he put me on azithromycin for about 3 months and my titers kept going up. They were around 1300 when I went on the IV's.
    They really haven't gone down much, but he doesn't seemed concerned by it. I still say I am feeling better than when I started. I plan on asking him why I feel better, but my numbers are going down. Last time I was there, he said they take a long time.

    Yes, he did take me off the valcyte for the entire time I was on IV's. He had me stop it 3-4 days before I started IV's. When my IV's were over, he put me back on valcyte right away.

    There was a girl from Australia getting IV's the same time I was. She was younger and had mycoplasma pneumonia, too. I would love to know how she is doing.

    I used to talk to a girl from Florida who saw Dr. Lerner and he wanted to start her on IV's right away. I think he wants to start IV's earlier than with me. He told me he was trying to see if he could do it orally first. I think he would have put me on IVs sooner, but he was going out of town and I think he wanted to be there.

    If you have any other questions, let me know. Cindy
  7. ladybugmandy

    ladybugmandy Member

    cindy, thanks for the info:)

    did dr. lerner keep you on the antivirals while he tried to treat you with oral antibiotics?

  8. chrissy12

    chrissy12 New Member

    Yes, I am/was on doxycyline, valcyte and valtrex. I get accupuncture once a month and I like to believe that is why my liver has held up. I have never had to stop taking them. He backed me off of valcyte for 3 weeks a long time ago, but then went right back to regular dose.

    Take care. Thinking about you and sending you many blessings.
  9. ladybugmandy

    ladybugmandy Member

    {{chrissy}}} thank you.

    how much valcyte do you take?

    maybe i should try really believe it helps you? my cousin used to keep telling me to try it but i never took her seriously.

    i am so glad you are better. it gives me hope.

  10. chrissy12

    chrissy12 New Member

    I take 900 mg of valcyte in the morning.

    Yes, I believe the accupuncture has helped me. I have been doing it for about 2 years. I have an excellent one. He always checks my major organs and gives them a boost. I have no scientific proof, but so far I have been able to take all the meds Dr. Lerner has given me.

    I just returned home from a birthday lunch with my sister, friend and mom. It was wonderful to have that hour out and to not feel sick. I am tired now, but am grateful for the chance to have some normal moments.

    I just keep believing I am going to improve. You will get there. You never give up and that's what it takes... Remember you did have some times where you improved, so you know you can again. Keep hoping!!!! Cindy