posted
Brandi think of it this way... the tests don't even verify for sure if we have Lyme over half the time,so we rely on symptoms and a clinical diagnosis.
We may not be able to know if the Lyme is gone or not, so quality of life is the issue. Living and enjoying it.
It's not so important to me if I can't iradicate the Lyme. I've lived with it for 25 years, and had some very good years.
If I can't iradicate it fully, I'll manage it with meds and healthy eating / lifestyle for the next 25 - 30 years.
It's important to me that I'm able to beat it back enough that I can have a great life!
I believe the meds will help tremendously with that goal. They will beat back the Lyme enough that my body can keep it in check even if it is still present.
If it's gone, then great! But having Lyme is teaching me to live a healthier lifestyle, especially with eating better.
Who knows but that having to do so may keep me from some other disease I would have developed from a poor diet.
Optimism is the key, and I believe that for the rest of the time I'm here, my life can be a blessing to me and others.
I know yours can be too. Now you are in a healing time. Read everything you can to be uplifted girl! you deserve JOY!!
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
| IP: Logged |
brandi is going to a good llmd in denton, texas trained by dr. burrascano.
trained by dr c of mo
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Dek,
Thank you so much for being there for Brandi...you are an angel of angels.
Brandi...
I saw that you are willing to try the salt/c. Make sure it's SEA SALT.
You will start feeling better when these parasites/worms start to leave and I don't know of a quicker way other than salt/c. They hate the salt and can't survive in it.
This is EXACTLY what came pouring out of me...and I suspect you may have this co-infection also.
Start with 1/4 tsp salt and 1/4tsp of powdered Ester C with bioflavinoids dissolved in a large glass of water. (per day) I ramped up 1/4tsp a day according to how I was herxing.
Also drink EXTRA WATER! I buy my salt and vit C (I use Real Salt) at
It is very inexpensive and it works!. Please hang in there and don't let these creatures win!! We all care about you and know how awful this disease can be, but you can beat it!! I will help you in any way I can...
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Brandi' >>>>>,
Praying for you and your loved ones!!!
This is a good bunch of folk here, their info' will help!!!
Jus' Silverwolfi-Swampthing
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
posted
why would ya'll want me to survive when I'm dying a slow painful death? wouldn't ya'll rather me pass away peacefully? why won't this disease kill me? I ask god everyday. And everyday I wake up to the same hell...
I'm not talking about just pain here and there....I'm talking about that it is tearing up my nervous system...my organs....my brain.
if you google "save marie utube lyme" you will see a utube video of a girl with my same infections slowly dying. Thats what I look like but worse at times.
I really just want it to be over. But I will not do it myself...I just want it to do it to me. Please God,...give me relief and let this be over.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
We would want you to survive because you are going to have great days ahead with your children and their children.
You just have to be strong and stop focusing on death.
Believe me, I have thought the same thoughts that you have. I believed I was going to die, even told my husband to do an autopsy, this was before I knew it was LD. I talked to God every day and said please take me; but he didn't. Why, because he has a purpose for us on this earth!
Why not ask God for HIS will to be done, rather than praying for what YOU want.
Think more positive....ask God for "strength" to get through this rather than asking Him for death. Make your prayers positive prayers. Tell God what you will do for Him, when you are healed. Tell Him how you will change your life for His sake. This life is not for "you" anyway, it is for HIM!
Maybe God doesn't want to hear you beg for death, but rather hear what you plan on doing for Him and for His glory.
Stop focusing on death. You are not alone; most of us have felt like we were dying from this too. It does seem like a slow painful death, but it will pass. Just know that you are not the only one that has been through this.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I just watched the Video of Marie. It is heartbreaking. I have been this sick and have been in ICU over 5 x over the last 30 yrs. I didn't get dx until 1999.
I know how brutal this is, and no one wants you or anyone else to suffer with this Horrific nightmare.
Like sutherngrl says you are not alone in this suffering. Since God isn't taking you, you need to start changing your focus from dying to how you can get better. If not for yourself, do it for your children.
We are here to help you...Sending you LOTS OF LOVE AND HEALING THOUGHTS,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< brandi'>>>>>,
Fight this Disease mess honey,Don't give in...don't give up...don't let disease win!!!
There is a reason you are here...I agree w/ suthern' and the many others who want to help you...fight.
Fight this disease,w/laughter,and w/ tears too... fight it w/ prayer,and meds and supplements,anything you can get a hold of to fight it w/!!!
Do it for your children,and for you too...We know it isn't fun...but it is worth the fight!!!
Laughing may seem a strange thing to do...but 'A merry heart doeth good like medicine'!!! And it can help!!!
I lost my Momma a year ago Mother's day weekend to a rare disease...it should have killed her in 24 months...we got to have her on earth from diagnosis in late '85, to last year in May 2008.
She had kidney and heart/lung issues from it,she was carved up on chest and back from so many surgeries...scars everywhere... but she kept fighting!!!
Momma prayed for folks,and watched good things happen...there was sorrow too, and troubled times, but she was there for all of us,as well as seeing seven out of nine grandkids graduate highschool!!!
Moms can do so much good,just by being there!!!Honey,please don't give up On Life..you have so much left to give...
Yes,even in pain and feeling like giving up... Brandi,you have a lot of living yet to do...Fight Dear friend...w/ every breath you take...fight this disease!!!
Just Silverwolfi, Praying for you!!!
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
HI Brandi,
I'm glad you are hanging in there. I know that it can seem very dark and hopeless at times. I have been there and still sometimes go to that place of hopelessness. God does have a plan, although it may not feel like it right now.
There are many people that have been cured by antibiotics. It can take 5 years or more of treatment sometimes. I have been in correspondence with many people that were cured and went from feeling like there was no hope to feeling very very good.
We're all in this together. Accept the support that is being offered. We are not meant to go through this alone.
Hugs and prayers.
Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi Brandi,
2 voice mail messages left for you today.
Call if you want to talk.
Let us know what we can do for you....send you supplies....whatever.
Make a plan to get better. It will happen.
sutherngrl is right.....God wants you to do His will.....not beg to die. Pray alot for guidance so you will know what His will is.
Remember that Jesus suffered greatly for us and our own suffering does not compare, even though it sure seems like it to us.
Perhaps God wants you to become an advocate for lyme patients when you get better.....there is a reason for everything.
I think it would be helpful to you to seek out a pastor.
Even if you don't know any in Kansas, there are lots of churches you can call and ask to speak to the pastor.
They could help give you hope and pray with you and for you.
Big Hugs, Dek
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
I think of it as one step at a time, whatever moves us in the direction of healing.
Any suggestions given to you by folks here can be searched for, in Medical. Past conversations about what people did and how they did it are available for us all to learn from.
Sometimes it can be helpful to make a Helping List - list everything on it that people are suggesting to do, and then also look through Search for discussions as well. And take notes.
Pain is a big issue. When we can find ways to get the pain level down, we can think more clearly. I encourage you to find pain meds that will drop your pain level down while you are exploring treatment options.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
i just saw this post..i totally feel all your symptoms..i think we all really GET IT! i have 2 small children myself and my youngest has had to grow up with a sick mom..it isn't fair to anyone...i have thought many times..if i go they will all be better off..my hub can remarry a HEALTHY woman. i never stopped fighting...i used to be a competitive marathoner...and this really took its toll on me..my hub would carry me to the gym and help me to keep lifting weight even at my lowest weight of 77 lbs...it is soooo hard but, you must keep going...your mind can be your greatest advocate..tell it to tell your body you can and will heal. pray a lot. with sincerest wishes for health, christine
Posts: 94 | From ut | Registered: Jul 2009
| IP: Logged |
bettyg
Unregistered
posted
quote:Originally posted by Lymetoo: [ Originally posted by bettyg:
brandi is going to a good llmd in denton, texas trained by dr. burrascano.
trained by dr c of mo [[/QUOTE]
lymetoo,
fyi, "* He is pretty new to all of this, but has been educating himself and learning under Dr.Burrascano, no. 1 LLMD in USA before he retired his practice in NY.
* Since my whole family is sick , we had the rare opportunity to be treated by Dr.B before he retired."
he may have had additional training ing by dr c....
brandi, good seeing and hearing from you today! glad you had a good sleep.
you've received wonderful advise so i'll just send this to you...
IP: Logged |
Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
There is good news with Marie, the last I heard she is improving and now able to live alone. She is getting better and you will too.
Optimism is key
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
dr.'s wife has lyme so he's really trying. he told me last week that they are looking into training some more people about lyme. now what that means, hey, i don't know, but it's encouraging for us.
he said i am one of the better functioning people he's seen so to me, he's great, but he did admit that he has several patients that he refers on due to the severity of their illnesses.
Praise the Lord for that tho!! at least he's willing to see me and get other people help.
now brandi, hon, i will buy any supplements you think you might want to try. i've also got buhner's protocol which is andrographis, resveratrol and cat's claw. i've also got liquid herbs like samento, burber, parlsey, etc., and i'l be glad to get you some.
i'm leaving town for a bit and won't be back until about the 20th but if you can hang in there, i would be willing to mail a package off.
i take a multi-fish oil, calcium, c, and some other stuff. normally when i send a package to somebody i just send what dr recommends and hope they can use it.
you let me know if you want to try some of these things.
wish i could do more for you but remember
"God never gives us more than we can bear" and I always say He must love me a whollllleeeee lot!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I dont feel good when I forget to take my supplements too many days in a row.
YOU have to find what works for YOU!!
What works for me is a calcium(2 Citrical) and magnesium(1 good 400mg) . IF you are short on either of those your body does not like it!!
I take Osteo Bi Flex,,,glucosomine/clondritin for arthritis or my joints HATE me,,and I wish I had.
I recently had a HUGE improvement,,,like in overnight help,,,by taking kelp,,,for the iodine,,our bodies dont function well without THAT either!! health food store has good kelp.(like natures way or Solaray are good brands as are others I assume.)
NOW get to experimenting and SEE what helps your pain and function.
I read and have not yet tried where cat claw (samento) is supposed to help greatly. MY jury is still out cause I have to get some first!!
See what benefits are had while reading and taking hints from others?? Take something for 30-60 days,,,if it doesnt help move on to something else,,,you WILL find something that helps,,,I am SURE!!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Brandi, Many of the problems you listed are symptoms of magnesium deficiency.
Taking magnesium will reduce inflammation and pain. Also twitching, light and noise sensitivity.
Your liver needs magnesium to make the glutathione that it uses to detoxify the neurotoxins left by the Lyme bacteria when they die.
Can't you stop the antibiotics for a couple days, and let the liver catch up with its work.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Oh honey, you are far too young to be giving up on your life! I've been where you are and I've felt your pain. I'm 31 years old and I have had this disease for at LEAST 21 years. I only started treatment 17 months ago and like you, I gave all three of my kids and my husband Lyme. I know the feeling... I know the pain both physical, emotional and mental.
You can't give up! You've only been in treatment a VERY short time! There will be a light at the end of the tunnel eventually... and I don't mean from death. Don't give up on your children and husband. Don't give up on yourself! Yes.. think positive. And grit right on through that pain. Your bacterial load is probably very high like mine was ... I am STILL on only mono-therapy orals but I've gone from dying on the couch to leading a mostly functional life! Just keep that hope alive where you will be able to enjoy life again. Okay... even if you AREN'T cured... wouldn't you be happy enough being functional a LOT of the time? How will you know if that will happen if you give up and die? *hugs* Keep fighting.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
| IP: Logged |
posted
Wanted to let you know that I'm still thinking of you and sending all kinds of good thoughts your way.
Randibear, there should be more people like you.
Posts: 423 | From Upstate NY | Registered: May 2009
| IP: Logged |
joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I was just thinking about you and wondering how you are doing tonight.
I hope you are feeling better!!
JoAnne
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
| IP: Logged |
posted
randibearcare to the rescue...
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Brandi,
Let us know how you are doing today.
Are you taking some pain medication now to help you get that under control?
Big hugs!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Brandimc,
Please check in and let us know how you are doing.
You are not alone! We all care about you!
JoAnne
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/