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GEORGIAGIRL WHERE ARE YOU???

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Posted 10/12/2008 5:20 AM (GMT -8)
Hey girl,

How are you doing! Have not seen you on line in a while unless you are reading and not posting!

How are you feeling? I hope you are getting used to the IV's!

Please keep in touch!!  Also see my post about wanting everyone's Lyme stories! Liz is collecting them and presenting them to the senators and congresmen!

I forogot to ask you if you ever called her to discuss showing the DVD at your chruch?

I hope you are OK! Call me is you get time!

Hugs,

Diane

Posted 10/15/2008 8:20 AM (GMT -8)
hey ! I just saw this after I talked to you today. I have not had much time to do anything lately.
Posted 10/15/2008 9:27 AM (GMT -8)
georgiagirl - how are the iv's working for you? I think of you often, hope you are seeing improvement
Posted 10/15/2008 3:35 PM (GMT -8)
Jginkc - how are you doing? Havent heard from you lately? What treatment are you on?
Posted 10/19/2008 12:40 PM (GMT -8)
jginkc

I'm doing better since i've started the IV's. I have been on the iv rocephin for about 8 weeks now. I am also taking rifampin for possible BLO. It still seems to be a VERY slow process but at least I have seen some improvement. 

I seem to feel the best when I stick to an anti-candida diet plan, but it is extremely hard for me to do everyday. I do the best I can.

My next appt. is tues. We will discuss some tests that I asked them to run. CD57, vitamine levels and heavy metals, so we will see......

Thanks so much for asking about me.

How are you doing with your treatment? 

Posted 10/19/2008 1:50 PM (GMT -8)
I'm hanging in there - I know Dr. J. in Wichita reads this post and I haven't told him yet, but its my life and I have to make decisions that are best for me and my family.

I got a call the day I got back from Wichita from Dr. B. office here in Kansas City. He's an ID MD that actually believes in the iALDS guidelines and is up on all the treatments, etc. I had been on his waiting list for over a year. He is that backed up.

He spent an hour and a half with me. We went over everything - all my blood tests, SPECT scan tests, etc. He told me that since I had an abnormal SPECT scan that showed some improvement with oral antibiotics, (improvement, but not back to normal) that I was a prime candidate for IV rocephin since he believes it is the only way you can get your CNS symptoms in remission.

Between that and reading "Cure Unknown" and all that has been written about IV rocephin crossing the blood brain barrier, etc., I decided to go for it.

So I have just finished day 10 of IV rocephin. Thursday was the best I felt in months - now terrible fatigue has set in that I imagine is a herxheimer reaction.

The good news is that my insurance covers all of this and as long as Dr. B wants me to be on it, they are ok. So let's all hope for the best.

My four year old and six year old son (not to mention my beautiful wife) deserve to have me back to where I was.
Posted 10/19/2008 5:20 PM (GMT -8)
The rocephin has definently helped my cns. I think you have made a good choice. What do you have to loose? I really hope this will help you.
I went to a friends 40th b-day party last sat. night and danced for about 3 hours! I could not have done that before the iv's. I was really tired the next day but it was totally worth it. It was the most fun i've had in the last year and a half. It was nice to know that I can still cut-a-rug! I'm sure I was a sight to behold!
Posted 10/20/2008 4:37 AM (GMT -8)
I am soo happy for you! You are the Dancing Queen! I laughed when you told me that!! You are very lucky ýou are feeling better that fast after starting IV's!

I am not sure if you have seen other posts but I have to have my adrenal gland removed due to the doubling in size and the density! I am þhabkful he is thinking ouitside the box and taking it out verse just biopsying it and missing what may be inside it! I am going to have it sent to a very good lab and tested for Lyme, Bart,Babaesia, and Candidia!! Then I can prove BCBS wrong!! 4 weeks of IV's does not rid the body of Lyme and coinfections!! I will call you layer on today! Hugs, Di
Posted 10/20/2008 10:12 AM (GMT -8)
Georgiagirl - great to hear you are getting energy back. I am in the middle of my first major herx with this - the fatigue is unbelivable!
Posted 10/21/2008 4:50 AM (GMT -8)
Georgiagirl and jginkc- I hope you both have great success with the Rocephin. It was the best for me and hopefully next month I will be getting another round of it. I was on for six months and it was like a miracle but once I came off within a few months I did relapse. I am not sure if it was because my immune system was not strong enough to hold if off.

I see Dr. H next month and we will decide if I am going to get another PICC. I am currently on Zithro/Mino and it is killing my stomach.

I saw a huge improvment in my energy as well..I wish the best outcome for you both!

Kim

Posted 10/21/2008 5:11 AM (GMT -8)
Thanks Kim:

My LLMD here told me that the minimum I will do is 3 months - most likely more and then he will have me on orals, maybe indefinitely. The nurses that change my bandages say that Dr. B. has lots of patients now on just orals after doing IV

I have never got close to remission during this - not with orals for a year, not on zhang's for 6 months, etc. I am hoping this will be the thing that finally gets me symptom free so I can lead a normal life for awhile.

My symptoms are all CNS - fatigue, some brain fog, numbness/tingling, etc. I never did have joint pain at all.
Posted 10/21/2008 6:11 AM (GMT -8)
jginkc - Good to see you back in the forum. Have been thinking of you and your recovery. I am from KS just like you I live 30 miles south of Olathe on I-35. I also have an appt with Dr. B. and have also read Dr. J. book and comtemplating visiting his office. Very curious to hear why you decided to go back to IV's? It would be a pleasure to talk to in private if that would be better for you. Please, I know you are a very busy person and you have your family to think about. Would really like to speak to you in regards to Dr. J and Dr. B

You can email me anytime @ jsmcgill@sbcglobal.net or call my cell phone 785-418-1033
I know this info I put on here is a chance I have to take but I really feel we can help each other in this process. My husband and kids are rooting for me just like yours are....I just want to be normal again and I know you feel the same.

Stacy
Posted 10/21/2008 6:52 AM (GMT -8)

Hey jginkc- I have all CNS symptoms too. I think that is why the Rocephin helped me so much. It is the only thing that stopped the twitching/shocking/buzzing/pain in my calf. Nothing else has come close.. Fatigue is probably my worse most debilitating symptom and the Rocephin made me feel about 80 percent so I am going to do everything I can to go back on.

Also I wanted to mention that my CD57 went from 21 to 60 on the Rocephin. I was just re-tested for co-infections to see if the Bart is gone.

Keep us posted on your progress and I pray it will bring you relief..I did want to ask though are you on any oral's at all now. I only took Plaquenil/Malarone/Rifampin while on Rocephin.

Take care

Posted 10/21/2008 2:21 PM (GMT -8)

Hi all,

It's been a wh9ile since I posted, but I keepo reading. I saw my LLMD yesterday and my CD57 went from 2 in march to 60 currently. I think it is because of the Bactrim regimen which I have ben on for about 4 month's now for BLO. Honestly, I have enough energy to get through the day compared to a year ago and 2 years before that. My main symptoms are serious bone, muscle and joint pain aling with mediocre sweating. I think I am on the right track for the BLO, I just need to find a way to stop the pain and sweating. I feel like they are connected in some way as when I'm in a good bit of pain I also sweat a good bit but only day sweats. The night sweats have gone away mostly. I'm not sure what to do next, go on herbal or go hard core with IV's whihc I haven't done before. By the way, if you don't remember, I have Lyme, Babesia and Bartonella/Mycoplasma? Thoughts? It would be nice to visit with some of you sometime. How, I don't know, but I've been on this forum for a year now and it has been a great help!     

Posted 10/22/2008 7:37 AM (GMT -8)
Stacey, I will try to call you at some point in the next day or so. The rocephin is currently kicking my butt. I am having to take time off from work. Dr. B says its a big herx.

Right now I am just doing rocephin, artemesia and ceftin. Dr. B says he will add something in on top of it in the next couple of weeks for possible bartonella. We don't know if I have it or not - the fry test came back as negative, but I do have some symptoms.

My brain seems clearer on rocephin, so that's one good thing. It is a heavy drug - good lord I thought I was exhausted when I had mono.
Posted 10/22/2008 7:41 AM (GMT -8)
Lymebean - I think you should discuss IV's with your LLMD. It is a choice that everyone has to make in concert with their doctor.

I wasn't big on going on it - but the Dr. Fallon study showing the effects of rocephin on the CNS really got me to thinking. Also, My CD 57 was at 100 in April after a year of oral antibiotics, and had gone down to 73 in September, after 6 months of Zhang's consistently.

Lastly, Ann (pain in florida) posts affected me a great deal - the fact that her and her children got well on IV's (Ann hasn't been on here in months) made me think it was the way to go.

I hope we all see remission soon.
Posted 10/23/2008 10:26 AM (GMT -8)
Hey Kim!
How are you? So you want to get back on rocephin? What did your doctor say about your relapse when you got off the rocephin? Does he think it was not long enough?
It seems to be helping me but the process is slow. I worry about the relapse rates. This is alot to go through to regress backwards when the line is pulled. Not to mention the expense.

I have tried to give myself a break from the computer lately.....it sucks me in and confuses me even more than I already am.
I have been busy trying to get all my paperwork filled out for SSDI. It is rather stressful and time consuming. It is also depressing at the same time! I never would have thought I would be disabled at the age of 35. But I owe it to my family to try to get some help, especially for these doctor bills! I know it's going to be a long process but I have an advocate that is helping me. Wish me luck!

Lymebean, it's good to hear from you. I have the sweats also but it seems like it's the worst for me when I go someware. I get nervous when I have to get out in public feeling so bad. I had to leave church Sun. because my shirt was getting wet. I think what set it off was all the perfume that people had on. It made me so sick and nausious.
Posted 10/23/2008 4:01 PM (GMT -8)

georgiagirl-Hey I am glad to hear you are having some success with the Rocephin. I definately want to go back on..I never would have stopped if it hadn't been for the gallbladder problem.

I was on mino/zithro but the zithro is making me so sick so now I am just on mino/plaquenil and malarone. My doctor here in NH wants me back on IV but I have to wait until I see Dr. H next month. It is the ONLY thing that helped me and I think that maybe if I have another 6 months I won't relapse.

I honestly think my immune system was not strong enough to keep the bugs away because I will tell you I felt really good while on IV. So I am willing to give it another go no matter what.

Please keep me posted on how you are doing and I will let you know what happens with my appt. on the 14th. I am sorry you have to go on SSDI and I wish you luck getting all the paper work done and being approved for benefits. My sister has MS and is going through the same process.

Dr. H did say that some of his patients do relapse after coming off IV but that everyone is different and he has had patients not even notice any progress for 9 or more months. I noticed within 6 weeks. I believe he keeps patients on as long as they are feeling better and progressing. All I can say is I want my Rocephin!

Take care

Posted 10/24/2008 4:37 AM (GMT -8)
Georgiagirl and Kim:

This disease sucks, doesn't it? Hard to believe that age 40 I would feel like I am 80. Georgiagirl, I am so sorry you are having to do SSDI.

Hang in there -it is good to hear you are having some results.

By the way, all my sweats went away again once i started artemesia again. I haven't had any in weeks.

Rocephin is rough - I am exhausted from it. Haven't been able to work all this week at all.
Posted 10/24/2008 10:49 AM (GMT -8)
jginkc- I had to take 2 months off work when I started Rocephin. The first month I was exhausted but it got better as time went on. I am lucky in the fact that I only have to work part time. My boss was very understanding and let me come back when I was feeling better.

Hang in there and I am sure you will start to notice a difference. As I told Georgiagirl my doctor said sometimes it takes months for you to feel better but everyone is different. I can't wait to go back on and I will beg Dr. H if I have to!

This disease does suck and it is hard to think back 4 years ago when I first got sick that I would still be stuck in this horrible nightmare. Keep us posted on your progress and hopefully I will be joining the PICC party soon.

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