It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lyme Disease Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 09-15-2007, 07:41 AM   #1
Senior Veteran
(female)
 
Join Date: Jan 2002
Posts: 5,818
ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Sarah92202...

Hi Sarah. How did the appointment go with Dr. F.? I hope it went well!

 
Sponsors Lightbulb
   
Old 09-15-2007, 04:42 PM   #2
Veteran
(female)
 
Join Date: Mar 2007
Location: USA
Posts: 493
sarah92202 HB User
Re: Sarah92202...

Quote:
Originally Posted by ticker View Post
Hi Sarah. How did the appointment go with Dr. F.? I hope it went well!
Ticker, hi, I have been meaning to get on the boards the past couple of days but have been sooo busy!! I think that it went very well. I really liked him, he is very nice and knowledgable and so is his entire staff. he diagnosed me with Babesia, which is not surprising, and I started taking 750 mg of malarone today. He also has me taking flagyl and Zithro. Also I am taking B12 injections twice a week because my levels were so low and I will be continuing with the armour also. He saw my son and my husband also. My husband is taking zithro, plaquenil and malarone. My son is taking Zithro and flagyl. Thank you for asking about my appt. I will comment more when I have more time. I hope that you and everyone else is doing well. sincerely, Sarah

 
Sponsors Lightbulb
   
Old 09-15-2007, 06:39 PM   #3
Veteran
(female)
 
Join Date: Oct 2006
Location: Kansas City, KS
Posts: 422
KeyLyme HB User
Re: Sarah92202...

Did your LLMD make your babesia diagnosis w/out any tests run? I think I have Babesia as well but my LLMD wants to do the testing through Igenex. I'd rather just try mepron or Plaqueril and see if I feel better...I sick of having tests!

I'm glad that your appt went well!

 
Old 09-16-2007, 07:50 AM   #4
Senior Veteran
(female)
 
Join Date: Jan 2002
Posts: 5,818
ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Sarah92202...

Hi Sarah. I am glad your appointments went well. Make sure you eat something fatty when you take the Mepron (cheese, peanut butter, etc.) or it will not be absorbed properly.

When taking Flagyl, make sure you do not have alcohol of any kind including mouthwash etc. or you can get very sick.

I hope everyone's treatment goes well!

 
Old 09-16-2007, 12:51 PM   #5
Veteran
(female)
 
Join Date: Mar 2007
Location: USA
Posts: 493
sarah92202 HB User
Re: Sarah92202...

Quote:
Originally Posted by KeyLyme View Post
Did your LLMD make your babesia diagnosis w/out any tests run? I think I have Babesia as well but my LLMD wants to do the testing through Igenex. I'd rather just try mepron or Plaqueril and see if I feel better...I sick of having tests!

I'm glad that your appt went well!
KeyLyme, no he did not run the tests for Babesia. I had been tested through Quest for Babesia a year ago, and then had the WA-1 babesia tests done through IGeneX in May. Dr. F went through my history and symptoms (without me even mentioning that I suspected all along that I have babesia) and said that He felt that I have it and that it is pretty much useless to test for it because there are at least 2 dozens different strains and the labs don't test for all strains. he said that him and Dr. C treat by symptoms and history. I was very happy with this because I honestly have believed all along that I had Babesia, I have had the symptoms for years, and the basic Lyme treatment has not helped me at all. also Plaquenil will not treat Babesia. One thing you should know about Mepron and Malarone, they are very expensive. I don't know what type of prescription plan you have. But even on my son's and my husbands the basic co-pay did not apply for the Malarone. My son's ins. usually has a $30.00 co-pay for Brand name, the Malarone for him is $227.00 a month with INS. without INS. it is $758.00. For me the Malarone with my INS helping is $358.00 month. I know this is cheaper than IV, but still, UGH. And there is no generic form. But getting better is the goal here and what is the point of having any money if you are bedridden or too sick to enjoy life!! that's the way we have to look at it. I know I'm gonna get better now!!! Does your doctor feel that you have Babesia, and will not treat unless he has a pos. test? Sarah

 
Old 09-16-2007, 12:55 PM   #6
Veteran
(female)
 
Join Date: Mar 2007
Location: USA
Posts: 493
sarah92202 HB User
Re: Sarah92202...

Ticker, thanks for the advice, Dr. F. said the same thing, and the phamacist told me about the Flagyl, she said it would make me VERY ILL. she said don't even take cold medicine that has alcohol in it. I don't drink anyway, except a glass of wine at a friends maybe once a month, so it's not a hard thing for me to give up. I am so glad that Dr. F is treating me for Babesia!! I am very impressed with him, and he was so wonderfully nice and caring!! I hope that you are having a good weekend. Sarah

 
Old 09-16-2007, 02:37 PM   #7
Senior Veteran
(female)
 
Join Date: Jan 2002
Posts: 5,818
ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Sarah92202...

Hi Sarah. I suggest contacting the manufacturers of these meds to see if you can get them through their prescription assistance program. You are paying a lot with insurance.

I don't know who manufactures Malarone. Glaxo Smith Kline manufactures Mepron and they do have a patient assitance program for Mepron.

Many people herx on day three and week three when taking Mepron. Good luck!

 
Old 09-16-2007, 08:25 PM   #8
Veteran
(female)
 
Join Date: Oct 2006
Location: Kansas City, KS
Posts: 422
KeyLyme HB User
Re: Sarah92202...

He said that he wanted to get me tested for Babesia (after I told him that I think I have it). I have horrible fatigue and used to have terrible night sweats...the night sweats are better now. I used to completely soak through our bedding and would have to change it in the middle of the night. I eventually ended up sleeping on towels and would just remove them when they were wet.

I just wish that he would try me on the Mepron to see if it helps...if it doesn't then, I probably don't have babesia.

How long does it take to know if the Mepron is working?

 
Old 09-17-2007, 08:55 AM   #9
Veteran
(female)
 
Join Date: Mar 2007
Location: USA
Posts: 493
sarah92202 HB User
Re: Sarah92202...

Quote:
Originally Posted by ticker View Post
Hi Sarah. I suggest contacting the manufacturers of these meds to see if you can get them through their prescription assistance program. You are paying a lot with insurance.

I don't know who manufactures Malarone. Glaxo Smith Kline manufactures Mepron and they do have a patient assitance program for Mepron.

Many people herx on day three and week three when taking Mepron. Good luck!
Ticker, checked out the assistance program already. Don't qualify again!! If I could just get one of my step-children to come live with us, then we would, but only being able to claim 3 puts the income level just under what we make. It sucks!! You are a great help with all your suggestions, though, and a great asset to this board!!! Sarah

 
Old 09-17-2007, 09:21 AM   #10
Veteran
(female)
 
Join Date: Mar 2007
Location: USA
Posts: 493
sarah92202 HB User
Re: Sarah92202...

Quote:
Originally Posted by KeyLyme View Post
He said that he wanted to get me tested for Babesia (after I told him that I think I have it). I have horrible fatigue and used to have terrible night sweats...the night sweats are better now. I used to completely soak through our bedding and would have to change it in the middle of the night. I eventually ended up sleeping on towels and would just remove them when they were wet.

I just wish that he would try me on the Mepron to see if it helps...if it doesn't then, I probably don't have babesia.

How long does it take to know if the Mepron is working?
KeyLyme, I have had the same problem with the night sweats, it's awful. It also happens to me when I eat. I just start sweating terribly, or if I have to stand for very long. I don't sweat under my arms, it's my neck, forhead, chest, it will just be dripping down my back, UGH!! It is so gross. But there is no smell!! I don't even have to wear deodarant on my under arms and I won't sweat or smell. (found this out last week when I went to LA to see LLMD and forgot mine, went all day without and didn't smell or sweat at all, and I was in Louisiana, where everyone sweats!! I also have this thing where I will gain 10 lbs in a few weeks, and then in 2 nights sweat it all off. It drives me crazy. I have like four different sizes of clothes because I never know what size I'll be wearing. and it's not because of period bloating, because I don't have periods, no cramps, bloating, anything, but not in menapause either. It's just strange Babesia symptoms. As for how long before I will Herx, I don't recall him saying how long it would take before I herxed. I just remember him saying I would be on it for 6 months to a year. ticker siad 3 days to 3 weeks, she has babesia, so she would know more. I think your doctor should put you on it w/o the testing, because if the test comes up neg. then he won't even try, and that could be a very costly mistake. Have you showed him Dr Burroscano's report. Babesia info is on page 22-23. He explains about the problems with testing, and says be prepared to treat based on clinical symptoms even with a neg. test. You will not get completely well if you have Babesia and don't get treated for it. Believe me I know this one for a fact!! And I too knew that I had it. who is your LLMD? I know that you have mentioned it before, but I am having Lyme brain. Believe it or not since I started taking the Malarone, I am having alot of trouble thinking clearly. I'm getting confused, and disoriented. I had this mildly before, but only sometimes, now I just can't even think!! This is a good sign, yes?!! If you cannot get your doc to prescribe Mep/Mal you could go see Dr C in MO. or Dr F in Louisiana, both these LLMD's treat by clinical symptoms and history. sincerely, Sarah

 
Old 09-17-2007, 10:27 AM   #11
Veteran
(female)
 
Join Date: Oct 2006
Location: Kansas City, KS
Posts: 422
KeyLyme HB User
Re: Sarah92202...

my dr is Joseph Brewer in KCMO. He's a great doctor and really hard to get in to see. I'm supposed to contact him at the end of this month to tell him how I'm feeling. I'm making a list of all my questions and concerns..babesia being one of them. I really don't want to get anymore testing...it's just so unreliable. Hopefully he will prescribe the mepron...we'll see.

 
Old 09-18-2007, 06:14 AM   #12
Veteran
(female)
 
Join Date: Mar 2007
Location: USA
Posts: 493
sarah92202 HB User
Re: Sarah92202...

Quote:
Originally Posted by KeyLyme View Post
my dr is Joseph Brewer in KCMO. He's a great doctor and really hard to get in to see. I'm supposed to contact him at the end of this month to tell him how I'm feeling. I'm making a list of all my questions and concerns..babesia being one of them. I really don't want to get anymore testing...it's just so unreliable. Hopefully he will prescribe the mepron...we'll see.
If he will absolutely not prescribe Mepron for Babesia w/o a pos. test go see Dr. C in Springfield MO and see what he has to say about your symptoms. Good Luck Sarah

 
Old 09-18-2007, 07:20 AM   #13
Inactive
(female)
 
Join Date: Dec 2006
Location: NH
Posts: 171
ktp812 HB User
Re: Sarah92202...

Hey Sarah
I haven't been here for a while. Having some levaquin problems. I am seeing the doctor tomorrow. Anyway, I have a question about Babesia. One of my first symptoms was night sweats which only lasted three months. Just a month ago I started having sweating during the day just like yours. Down the neck, chest and forehead. I have it on and off all day and of course I still have the terrible fatigue. Now I am wondering if I also have Babesia. I tested negative for it but positive on the Bart. I am not sure if I should bring this up tomorrow or not. I am definately going off the levaquin. I don't have headaches very often so am not sure these symptoms are caused by something else.
Are you still taking the cortef? I am still on it and the thyroid also. If you have a chance write and let me know what your other babs symptoms were.
Thanks
Kim

 
Old 09-18-2007, 12:03 PM   #14
Veteran
(female)
 
Join Date: Mar 2007
Location: USA
Posts: 493
sarah92202 HB User
Re: Sarah92202...

Hi Kim, good to hear from you. Have been wondering how you have been!! I was having the night sweats, and sweating at other times, but also having fatigue, migraines, sence of imbalance at times, trouble breathing. I would be fine one minute and then couldn't breath the next especially when bending down. The testing is so unreliable because of the amount of strains there are and the fact that only 2 are tested for. Discuss it with your doctor maybe he will treat you by symptom history without a pos. test. I am so glad that my LLMD did because I knew without even mentioning to him that I had it. I just let him diagnose it without my input, if he hadn't suggested it I would have asked. this impressed me very much, that he was so knowledgable about the disease, symptoms and testing failures. Plus I have gone almost a year on just Lyme treatment ans wasn't showing any improvement, that is alot of times a sign that there is a co-infection that is keeping you from getting well. Good luck and keep in touch!!! Sarah

 
Old 09-18-2007, 12:22 PM   #15
Inactive
(female)
 
Join Date: Dec 2006
Location: NH
Posts: 171
ktp812 HB User
Re: Sarah92202...

Thanks Sarah-I will talk with him tomorrow. I can't take the levaquin anymore so I am not sure I need to go on something else for the Bart. I don't know if two months is long enough but it did make my sore throat go away after 10 long months!!! I know he is going to put me on IV. I still have all my CNS symptoms and I just don't think the oral meds are going to help with that. I hope you feel better on all your new medications. I will let you know how it goes tomorrow. I am really afraid of IV but I might have no choice. Take care.

Kim

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
To Sarah92202 Avalou Lyme Disease 2 08-22-2007 10:02 PM
Sarah92202-we went got dx mome22 Lyme Disease 14 05-04-2007 06:45 AM
sarah92202 mome22 Lyme Disease 36 04-27-2007 05:16 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 11:51 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!