Hi Everyone! Still in Remission!!!

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PainInFL
Veteran Member


Date Joined Aug 2007
Total Posts : 1430
   Posted 2/9/2009 11:26 AM (GMT -6)   
Sorry I have been away for awhile.  LOTS going on!  Good news is my LD has been in remission since July of last year.  Same with all three of my daughters!!!  Dr C in Tampa is my hero and saved our lives!  I am so happy not to have to make that monthly 7 hour trip.  On a worse note, the cost of all this has been huge.  My husband and I separated last year, our home is in foreclosure, the girls and I have moved, but I have found a wonderful new man.
For those of you that get down and out and feel like absolute CRAP.  Believe me, I have been there.  There ARE better days ahead and attitude is EVERYTHING!  Do what your LLMD tells you, stick with a strict schedule and diet and you will prevail.
I have learned through this long terrible journey what is really important in life, and that is health and family.  The rest is just stuff.
If anyone needs any help or advice, feel free to ask, I have pretty much seen all the abx, pain meds, supplements, diets, etc. while having 4 (including myself) in LD treatment.  I am very happy to say that I am done with it all except for one pain med I take as needed for my back.  Other than that I am a new person and have not felt better in the 20+ years I was infected.  My treatment started August of 07 and was finished in July of 08.  My teenage daughters had picc lines and were treated intermittently during that time.  My 16 year old had the worst case and required 4 picc lines over the course of that time.  Rocephin/Flagyl/Zith worked for my 13 year old and Vanco/Flagyl/Zith was the key for me and my 16 & 18 yr old daughters. 
I hope everyone is well and to everyone still struggling with this horrible disease KEEP FIGHTING!!! yeah


Dx-LD, Ehrlichia, Bart, Addison's Disease, Infected 20 years ago.
Tx-Doxy 9-11/07.  Pulsed Rocephin/Flagyl/Rifampin/Zith 11/07-1/08. Infected by contaminated Heparin Syringes with Serratia 
1/08-7/08 Tx-Vancomycin 1g 2x day & pulsing 1500mg Flagyl daily.  
Teenage daughters infected from placental/breastfeeding transmission,  16 yr old two rounds of Vanco x6 wks-finished w/Medron & Zith, 13 yr old finished Rocephin IV/Flagyl & Zith oral combo, 17 yr old finished Vanco/Flagyl.  All kids on Biaxin/Flagyl now. 
                                       ALL OF US ARE IN REMISSION!!!
 Co Moderator for Lyme Disease Forum

Post Edited (PainInFL) : 2/9/2009 10:54:06 AM (GMT-7)


1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 2/9/2009 1:06 PM (GMT -6)   
Anne-

So happy to hear from you and know you are all doing well!!!!

Sorry to hear about husband and home. This illness certainly sets priorities does it not?

I am still seeing Dr. C, not 100% yet, not sure if I will get there at this point. I love him to death, but thinking I need another "look see" from someone else.

Please tell the girls I said Hello!

Melody

PainInFL
Veteran Member


Date Joined Aug 2007
Total Posts : 1430
   Posted 2/9/2009 1:38 PM (GMT -6)   
Hi Melody!

Yes. It seems that this illness dictates your life and then you are left picking up the pieces.

I forget, have you done the IV route or are you still on orals? Orals did nothing for any of us. I know everyone is different.

It is so good to hear from you, keep plugging away!

Anne~
Dx-LD, Ehrlichia, Bart, Addison's Disease, Infected 20 years ago.
Tx-Doxy 9-11/07.  Pulsed Rocephin/Flagyl/Rifampin/Zith 11/07-1/08. Infected by contaminated Heparin Syringes with Serratia 
1/08-7/08 Tx-Vancomycin 1g 2x day & pulsing 1500mg Flagyl daily.  
Teenage daughters infected from placental/breastfeeding transmission,  16 yr old two rounds of Vanco x6 wks-finished w/Medron & Zith, 13 yr old finished Rocephin IV/Flagyl & Zith oral combo, 17 yr old finished Vanco/Flagyl.  All kids on Biaxin/Flagyl now. 
                                       ALL OF US ARE IN REMISSION!!!
 Co Moderator for Lyme Disease Forum


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 2/9/2009 5:41 PM (GMT -6)   
Anne!!!

Thank you for checking back in and letting us know how u are doing! And ur BEAUTIFUL daughters are all doing well! That's such wonderful news! I am grateful you had the help of Dr. C and that his protocol brought you through that long, long journey of suffering.

I am very sorry to hear about your family suffering at the expense of your marriage, Anne.
I cannot imagine what you have been through; but you sound so very happy and loved.
I pray that your strength is your song in the days ahead!

I know that your experience will bless many.

Please stay in touch! Tell your girls hello from Diana and Heth!

Blessings,
Sojourner

alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 2/10/2009 9:43 AM (GMT -6)   
Hey Anne -
So glad to hear you are all doing well! You have such a positive attitude -- that health and family are more important than everything else. I'm glad you decided to check in!
Your post reminded me of something I wanted to share: I went to my psychiatrist last week (I see him once every several months for anxiety, more maintenance now than anything else). I've been seeing him for about 8 years, but I hadn't been in about a year. Anyway, I spent a lot of time telling him about my boyfriend, my business that I'm planning, and how I feel like my life is coming together in a lot of ways. At the end of the visit, he said to me, "This has been a noteworthy session: For the first time in many years, you didn't even mention lyme disease!" Yay! Of course I still think about it all the time, but it wasn't dominating my thoughts about my life during that particular hour.
Anyway, thanks for checking in!
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Treated for two years solid. Diagnosed with Lymphomatoid Papulosis in October 2007. Currently back on abx.

Moderator for Lyme Disease forum


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 2/10/2009 5:48 PM (GMT -6)   
Anne,
If you could can you give me the info. for the Dr. in Tampa directly. I think your daughter gave it to me before..but...lol
I am thrilled that you and your girls are doing so well. And that you have a new man in your life and that you are happy. Some people are not meant to stay in our lives for ever. And a fresh start may be just what you need. :>)
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 2/11/2009 6:39 AM (GMT -6)   
Thanks for a positive post...

Most when they are well, never want to see a Web site for posting about Lyme or any other disorder again!!!

So you are so appreciated as that rare person who cares about those of us still suffering!!!

Question...How long have you guys been in remission?

Thank you and God bless! So sorry about the strain it caused on your marriage. Was probably "for the best".

Since you found a new wonderful man my bet is you'll be in remission forever. Ain't love grand?

teenLymer
Regular Member


Date Joined Dec 2006
Total Posts : 186
   Posted 2/12/2009 12:37 PM (GMT -6)   
Woo-hoo! Yay, you're still doing well! That's great to hear!! Tell your girls hello for me.
~Sierra

Obstacles are those frightful things you see when you take your eyes off the goal.  

Henry Ford

“Nothing can stop the man with the right mental attitude from achieving his goal; nothing on earth can help the man with the wrong mental attitude.”
Thomas Jefferson 


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 2/16/2009 2:59 PM (GMT -6)   
I am so happy for you and pray your new life continues to give you hope and health. Blessings to you!
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!


bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 2/17/2009 10:26 AM (GMT -6)   
Congratulations Anne! Wishing you and your family all the best!! Thanks for checking in on us and giving us the good news. bablymers mom
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