Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Bea,
I was confused at first also, but then I realized that I think betty posted that thread by Michele to illustrate the devastating effects that suicide has on the surviving children.
-------------------- 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
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Brandi,
Could you pm me your address and name so I can send you some things?
-------------------- 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
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posted
Brandi - I think you need to get in touch with someone here - Dekrator is offering to talk with you. She is also a nurse.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
sorry for the confusion, yes, I saw a second llmd after dr. c in MO. since we found someone in texas who was LLMD. and we were in texas at that time. Dr. C only does monotherapy, at least with me, doxy, then ceftin, then zith then flagyl. then he wants to see in you 5 months.
So, I went to dr. W in denton cause I was hoping for maybe IV treatment, but I do not qualify cause I don't pass texas lyme test only igenix plus they would only do 30 days if I even qulaified.
I'm scared to call ya'll cause I'm afraid ya'll will tell my family. they know I'm suicidal.
posted
Well, how about if someone makes an agreement with you that they will not talk with your family for now but just with you at this point?
Posts: 13171 | From San Francisco | Registered: May 2006
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I'm talking with Brandi on the phone.....
-------------------- 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
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posted
feel so useless but sending hugs and prayers.....
Posts: 234 | From BC Canada | Registered: Aug 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
She talked with me....agreed to try her pain med tomorrow that she has, but was afraid to try sooner with her other meds.
Said I could call her tomorrow.
Said she would not kill herself.
Brandi....Thanks for talking to me.
Take it one moment at a time.
Alot of people here care.
Keep seeing a good LLMD....many people have to drive a long distance to see one.
I will call you tomorrow. Go hug your children.
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
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posted
God bless you Dekrator!!!!! I am so happy that she has you as a friend.
And God bless you Brandi, and your whole family. You will make it!!!!!! You will be a survivor and you will regain your life. You will see and we will all celebrate together:grouphug:
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
You may test positive after you've ben treating for a while and then be able to get insurance to cover IV.
I didn't have a fully CDC positive WB until AFTER txing Babesiosis & then Lyme for a while with oral ABX.
The burning pain that feels like your spine is on fire PASSES!!!! I had it too & I WANTED TO DIE!!!! Looking back, it really didn't last that long.
I found relief from the firey pain in movement. If I laid down & felt like I was on fire, I would immediately get back up & stretch wherever I felt it repeatedly until it faded. Then I could lay down & sleep.
It would take 15-20 minutes top to get all of the areas calmed down. If it was in my knees, hips or shoulders I would repeatedly flex & extend or rotate the joints. This would clear it for me by increasing the blood flow in the area & flushing it out.
Hey it could be worse. You could have your DH offer to give you a back rub while your spine is on fire, rub your back for a few minutes & then LAY ON TOP OF YOU & want to do something else! Talk about wanting to die!!!!
It passes! This too shall pass!!!!
If you can get to a health food store or get your DH to get it, Holy Basil (aka-Tulsi, Tulsai) Is an Ayurvedic Herb that helps with depression. It's adaptogenic so it should help balance what you're feeling so you can think a little bit more clearly. I used it to get off anti-depressants.
THIS IS NOT YOU!!!! The spirochetes & the medication are making you think like this. Once you get a bit further through treatment, you should start seeing some improvements & feel more hopeful.
Children are MUCH more resilient than adults and they generally respond to treatment MUCH more quickly. You didn't deliberately give it to your children, did you?
Unfortunately sometimes in life spit happens & it really, really rots. It doesn't help anyone or anything if we think about how things could or should have been.
Don't waste your time thinking about things that happened that you can not change. Instead think about what you need to do to change the path where things are heading.
You are doing what you need to do right now. Take it one step at a time.
First step- CALL YOUR LLMD!!! Find out if/when you can make any changes to the meds & whether he can Rx an anti-depressant until you get through the Babs Tx.
You need to fight back. Your family needs you to fight back. Your BABIES need you to fight back! DON'T LET THOSE LITTLE BUGGERS WIN!!!!
You can call 1-800-273-TALK if you want & a trained counselor can help you think this through.
How old are your children? Are they in school?
Can you refresh my memory, what was the trigger 4 months ago?
hugs & prayers, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Thanks for talking with Dekrator, Brandi - I know that was a big step for you! - one day at a time - Dekrator will be waiting to check in with you tomorrow!
Ali, I like your slogan: sometimes in life spit happens!
Now what we need for Brandi is a respit(e)...
Posts: 13171 | From San Francisco | Registered: May 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Dekrator if you would please get her address so who can may send her some things to help out. Thanks.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Dekrator, GREAT JOB!! That is so wonderful that you talked to her and could give her some realtime support!
And thank you for alerting us to her plight!
And I'm very proud of everyone who cared and rushed to help this stranger who is desperate. It's very heartening that this community of Lyme sufferers will come to someone's aid.
It's very wonderful of all of you.
Let's keep it up and help her get help.
James
Posts: 872 | From New York City | Registered: Jun 2008
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bettyg
Unregistered
posted
quote:Originally posted by Dekrator48: [ Bea,
I was confused at first also, but then I realized that I think betty posted that thread by Michele to illustrate the devastating effects that suicide has on the surviving children.
dekrator, YES, that is exactly what i was trying to show the effects of suicide has on the surving children, and michele is one of them that i just read about last night.
god bless you my friend, dekrator, for reachign out and brandi trusting you so you 2 could talk 1 on 1; we all feel so much better about this situation now.
brandi, as you have discovered, there were MANY different members who joined in to give you morale support, a shoulder to cry on, to give you encouragement as they have been where you are at right now.
brandi, we all pray you will have a restful sleep tonight and dekrator will call you as she said she would hugs/kisses to you both...
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bettyg
Unregistered
posted
brandi, when i called your texas llmd's no; they gave me his "substitute's number'.
I'LL PM THAT TO YOU NOW so you could call and follow up with them since she is a llmd also. ok
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
Ditto as to what Luvs2ride said. She gave you excellent advice. Coffee enemas are real cheap and offer huge relief from lyme symptoms. I would like to add that filling empty capsules with tumeric works fantastic for inflammation. Also avoid inflammatory foods such as fatty meat and nightshade vegetables(tomatoes).Definitely don't eat sugar.
I have that exact symptom that you described when falling asleep and getting jerked awake.....it sometimes happens 20-30 times a night and drives me completely mad so I can totally relate. It does go away once toxin load is reduced from detoxing and inflammation addressed. Someone mentioned chacoal which is real effective too.
It took quite a while of treating to finally learn that I really don't have to suffer so hard during a herx by teaching myself how to detox and reduce inflammation by using coffee enemas, charcoal and tumeric which are all super inexpensive.
Hang in there, you will feel better even if it is difficult to see that in the current moment.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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posted
Brandi, when I was your age I was very ill and didn't know at that time it was Lyme infecting my heart and whole body.
My daughter was 13, and I decided I would do everything I could to get well, though I realized I might not make it. I had a long talk with God and bascially left it in His hands.
I did what I could to get better, and just tried to get through each day, many of them mostly in bed.
The good news is I'm now 18 years older, and just danced at my daughter's wedding.
I know you feel incredibly horrible right now, but giving up on life isn't necessary, and it isn't an option.
Take all the advice given above, keep in touch with Dekrator, and know that we are all praying for you.
God has a plan for your life that includes health. However right now your body is fighting, and you are giving it the medication it needs to do so. Give it the time it needs too.
And definitely give it the natural food it needs to heal, and no sugar. Really, zero sugar. That's very important. You won't believe what nutrition can do for your body. Go with natural whole foods. Doesn't have to be organic, just natural food.
You can win. I did and survived.... I know you can too!!! After all, you have three weddings to dance at girl!!!
Not to mention all the other milestones along the way. That's worth any struggle, and you can win this battle!
Just approach it day by day, and believe that there is a better tomorrow! I'm living proof.
-------------------- 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
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Brandi, I go to the same doctor as you do in Denton. He's a good doctor, yes, but he is limited in his ability to deal with advanced chronic lyme patients.
He helped my wife when she relapsed but her disease was caught early. I had lyme for 12-14 years before we found out. Dr. W is a great doctor but you may need to see someone who is more experienced with advanced lyme disease. I'm not sure Dr. W has enough experience to deal with cases like yours.
He hasn't been able to help me because of the severity of my disease, but he's given me pain pills for pain. When I had my first episode (ever) of anxiety attack he gave me some xanax. That really saved my neck as I thought I was going crazy and it scared the dickens out of me.
It happened over the weekend (two months ago) and he was not responding to his answering service so I looked up his home phone on the internet and called him at home. He was kind enough to call in a Rx for xanax for me. Like I said, that stuff saved my neck because I really thought I was going crazy.
If you aren't on xanax ask Dr. W to prescribe you some as it will help you get through the anxiety attacks when you get them. Take your pain pills! When your pain lessens it will help you to be able to rest better.
I suggest you stay with Dr W until you can get hooked up with a more experienced doctor. Hopefully someone on the forum will lead you to a good doctor who can help you through this.
There is hope--don't give up! Your kids need you and things will get better. One day at a time.
gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
quote:Originally posted by springshowers: Here is a Christian Program that is supposed to help Pay for medical care and I know one person on it who is getting all her treatments covered.
You have to participate but maybe your husband can sign up and see if they can help you in any way?
springshowers, samaritan ministries is a great organization! My wife and son both joined it and they have been wonderful. My son and his wife were reimbursed for the delivery of the first baby and in two weeks their second baby will be covered as well.
We were very surprised when they accepted to pay for my wife's lyme treatment! But they did and she was fully reimbursed for everything she paid out.
However, they will most likely not pay for Brandi's lyme medical bills because it's a pre-existing condition and that is something they will not cover.
It's unfortunate but that's pretty much the norm, even with insurance companies.
Brandi, I'm so glad to see you made it through another day and that you are feeling better! One day at a time! : )
posted
I agree that dr. w probably isn't as experienced, and I've talked to people that haven't been helped by him. But he's all I got right now.
I'm just curious, Have none of you read that lyme disease isn't curable...that the antibiotics just make the bugs go deeper into brain tissue and bones and muscles? I've read so much out there...and saw so many utube videos of people doing the natural route vs. antibiotics . It just seems overwhelming...VERY OVERWHELMING. Isn't that why all those natural remedies are out there...including rife machines, herbals...you name it. I'm just sooo sick and in pain...it just seems like it's too late for the natural route. But then again, I feel it's too late with antibiotics also. My bones vibrate all day...I know the bug load on my system is huge. in my brain....everything. Doesn't antibiotics just ruin an already compromised immune system and let those other viruses and things come out? (EBV, etc.) I have babs ducani...which I've read is almost impossible to get rid of. on tope of lyme and ehr. Have any of you considered the natural route other than years of antibiotics to at least try to get into remission? I want to survive,...I really do. But I know what hell I've been through...and my body is shutting down. Anyway...think positive,...right?
thanks for all ya'lls help last night. I will fight another day today. But I still pray that if it's not Gods will for me to survive, then take me peacefully.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Brandi,
Good morning.
Glad you are feeling better today.
We know that lyme isn't supposedly "curable" , but it is very possible to go into remission and stay there.
That is what you are fighting for.....to lead a normal life.
Do you have good probiotics?
My LLMD says that even though natural methods can have their place within lyme treatment, he has never seen anyone get really better without antibiotics.
It takes long term combination antibiotics to kill all the forms of the bugs.
I am happy to hear you say you want to survive.
I had a time in 2008 when I thought I was dying too. That was before I knew I had lyme.
God wants you to survive. He want you to be there for your children and husband.
He wants you to do everything you can to help yourself.
It IS overwhelming. One step at a time.
Continue to post your concerns and questions on the boards to gain the experience of others who have been through this.
I'll call you later.
-------------------- 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
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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
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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: 96239 | From Texas | Registered: Feb 2001
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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
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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
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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
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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
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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
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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
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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
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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: 13171 | From San Francisco | Registered: May 2006
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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
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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...
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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
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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
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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
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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: 6956 | From Lancaster, PA | Registered: Feb 2004
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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
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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
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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
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posted
randibearcare to the rescue...
Posts: 13171 | From San Francisco | Registered: May 2006
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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
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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
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