So, I know a lot of you helped me in the beginning. But, I really am ready to die. At night, I have spasms in my head, jerking me awake...like seizures. My brain hearts like hell, can't think, can't do anything. I have had one major seizure. I have heart pain nonstop, a burning in my heart, chest. I've had sensitivity to noise, light. MAJOR burning in my back. MAJOR nervous system attacks...sort of like MS attacks. Major shaky, can't think, can't do anything. I've had brain inflamation where I've almost passed out, spine inflamation, vertigo, SEVERE twitching. Not to mention, when the die off happens, I go into a coma like state and convulsions on the floor. Made it to a doc, but i'm only on doxy. He has also given ceftin, and will take that today. I am hoping the herx kills me, cause this is too much. the Lyme and babs has won. I can't stand what this is doing to my family, and I am trapped in a body slowly deteriating, slowly eating itself, so much pain I can't stand it.
I don't have access to a good LLMD, I don't have access to IV's or herbs or anything that good LLMD's give. I passed this on to my kids and husband. I will die a young 34 year old mom. My life is over.
Been to ER, been to several docs. Have had this for at least 10 years. I know I sound so hopeless, but I can't stand it anymore. I know when I start the ceftin (cyst buster), I will be in such pain and agony. It is such entrinched my my nervous system, I can't stand it. I have appreciated all ya'lls help, but I'm done. sorry. I'm taking two ceftins today and hoping it will finish me. The pain is too much, it goes all over my body, shooting nerve pain everywhere. Makes me crazy, literally. I've hallucinated, wanted to jump off a bridge, swollow pills, whatever. I know I sound hopeless, but I can't stand it anymore.
Posted by Dekrator48 (Member # 18239) on :
Brandimc,
Please listen.........
I know you are suffering greatly.....many people here understand what you are going through.
Please do not give up.....your children need you.
Your children can't be that old if you are 34.
Do not leave them in this world alone.
Sometimes our pain clouds our thinking so much that we aren't thinking about how your dear children would be affected by losing their Mom.
They will have enough to deal with in their lifetime, let alone knowing that their Mom wanted to die.
Please......if you are suicidal, go to the suicidal hotline info at the top of this board, or call your local mental health center or crisis hotline.
If you are not suicidal, but are so depressed that you cannot find the strength to go on, please do something to get psychiatric help.
Call your psychiatrist/psychologist/counselor immediately if you already have one.
If you don't have one, call your local mental health center and ask about crisis counseling for low income people.
Tell them how desperate you are.
Are you on antidepressants? Call whomever prescribes them, if you are, and tell them how you are feeling, and ask for help.
I am so sorry that you are so sick and are feeling isolated from the care that you really need.
Brandi, please, do not give up and leave your children......they love you, they need you, they depend on you.
You do not want to miss them growing up.
Others will be along with more advice, I'm sure.
I am praying hard for you....please listen to what I am saying.
love and hugs, Dek
Posted by BHealthyNow (Member # 22537) on :
I am so sorry you feel so bad. I have had days like that when I feel so awful and no one knows what's wrong and can't imagine living like this.
But I know my son needs me. And I have to fight this for him.
I hope you can call someone today and get some help. Antidepressants might help if you aren't on them.
Sending lots of thoughts your way.
Posted by JamesNYC (Member # 15793) on :
BRANDI,
I'm so sorry you're going though this! Do what Dekrator says. But also call the DR and tell him to GIVE YOU PAIN KILLERS!
The depression and pain are making you feel this way. Get it under control.
Do not traumatize your children and husband. If you die, they will live with guilt the rest of their lives. YOU CAN'T GIVE UP!
Tell your husband and have him find someone who can get the pain under control!
THINK OF YOUR FAMILY! PLEASE.
Ceftin is not a cyst buster, it's another abx. So the herx may not be worse.
You can't let these damn microbes win.
Hang in there.
James
Posted by just don (Member # 1129) on :
Antidepressants and PAIN meds are in order. If you have them,,get some better ones!!
You WILL make it!!! One day,one breath at a time!! One foot in front of the other,,if thats what it takes.
Posted by sutherngrl (Member # 16270) on :
Your children need a mother that shows them how to fight, not how to give up.
Take the steps, one at a time, whatever they need to be to survive. As said above, get pain meds, antidepressants, whatever you need to fight this fight.
Whatever choices you make will affect your children for the rest of their lives. Show them how to be a surviver!
Posted by liesandmorelies (Member # 15323) on :
I am praying for you!!!!!
We are all praying for you!!!!!
You will make it. You can do this. Yes, it's so hard, but you can fight this and beat it.
Know we are there for you.
Everyone above is correct. Your kids love you and need you more than you know. The pain is real, but keep telling yourself that it's your bodies way of letting you know that something is wrong and just needs to be fixed.
It's a hard road, but one that can be fixed. Will it ever be perfect, maybe not, but you can get to a point where you will feel a lot better and the pain will not be so bad.
Have you called your doctor yet and told them just how bad you are feeling and what your thoughts are? This is really important and you need to do that right away.
Can you tell us if you have called your doctor this morning????
Big gentle hugs Posted by Brandimc (Member # 22017) on :
I'm sorry guys, I refuse to die in a psyc hospital or slowly go into a coma while my body is dying in pain. My girls lost their mom 4 months ago when I got sick. I can't even take care of them. They all have it also, I gave it to them. I've had to have help everyday. The lyme is in my brain, ...deep and my bones vibrate at night. I can't feel these damn things in my bones, muscles, and my nervous system is going crazy. Ya'll dont understand, I'm dying a slow painful death. When I can type and read, I've done so much research its unreal. There is no cure, unless you can get help like Wildconner who had help 24/7 plus IV's plus orals, and fight them tooth and nail. I'm losing my hearing, my eyesight, the bugs are in my spinal cord, I can barely walk at times. There is no way I can survive, so why put my family through hell trying to save me. They will be at my funeral now or later....I can't bare to have them see my wither away. my doc said Ceftin is a cell wall braker, I'm already on marlorone, and doxy. I haven't herxed yet, but know it's coming. I AM IN BAD SHAPE< BAD BAD BAD There is so much research that says antibiotics don't kill the lyme. I know I just sound depressed and suicidal, but even my husband knows it's too late for me. I'm taking the 2 ceftin pills today and hoping to be with Jesus before too long. I don't know why he let this happen to my family...we were so happy. But when you give birth to 3 daughters, ages 4,2, and 4 months, and now you are dying. life isn't fair. Now they have it and so does my husband. We are out of money, selling the house. And I believe that we are re-infecting each other with our saliva. There is research that it is that contagious...in all bodily fluids. This is the next swine flu epidemic.
The infection is in my heart....there is not much more to be done. sorry guys, I know you just want to help...but its too late for me. too late. The medical community has failed us. ALL this suffering and misery from a little ****ing bug.
Posted by wtl (Member # 19883) on :
Brandimc - I am speechless and powerless in finding anythign that I think will have lasting effect to help. But I feel like you might want to seek someone to talk thing out. I know it is hard to find anyone who has the knowledge of Lyme disease, but I tend to believe that any sensible psychological professional will have the training skill to listen and understand, theerfore, provide you with the proper help you need.
I believe, no matter how sick you are, your kids would rather have you around than without.
My wife is in the similar situation as you are, but my 3 year old can't do without her, even just being around and gives her a smile, that was all she wanted to see on her mom's face.
Please...you mean more to them than you realize...
Posted by feelfit (Member # 12770) on :
Brandi,
Hang on sweetie. I have been where you are coming from and I am here to tell you it can and will pass, though it doesn't feel like it right now.
Lot's of good advice here. Know that you are NOT alone! If you need to talk, PM me and I will give you my number.
Stay strong, Feelfit
Posted by peacemama (Member # 17666) on :
They didn't lose you 4 months ago. They need to have you here, physically on this planet, in whatever state you are in. Kids are resilient when it comes to super, super, super, sick mom. Super dead mom, not so much.
You can get through this. And heal. You have to keep knocking the bacteria down. Lower the levels.
Keep going. I know where you are coming from Brandi. My kids are 14 and almost 5. Babs is in my husband's heart and the kids are sick, the little one is very sick. And even when I want to die, I know I can't. They can't do it without me, and your family can't do it without you. If you give up, they give up. So, fight. Fight for them. When you get well, you will have the strength to get them well. No one else will do it for you.
You have to be here for them. I know. It sucks that we, as mothers can't make the choices we want to, but we signed on as their parent, and we can't change that. They will be amazingly compassionate adults because of what you are going through now. Give them the gift of that. Fight. Fight. Fight.
I am sending you love, compassion and hope. Today I have it to give. And selfish me? I need you to stick around and fight so when I am where you are, you can remind me that I need to stay here and fight. The lyme is NOT winning, Brandi. It just feels like it is.
(((((((((((((hugs)))))))))))))))
Posted by Pinelady (Member # 18524) on :
There are lots more to help.
Posted by merrygirl (Member # 12041) on :
hi there. I have been where you are and it is not a good place. I fought through it and I am doing pretty well now. you definitely could use some pain meds and antidepressants to get thru what your going through. What kept me from killing myself was picturing my kids at my funeral, and my hubby telling them i wouldnt be coming back. please hang on.
melissa
Posted by liesandmorelies (Member # 15323) on :
Is there any way your husband can get on here so we can write to him?
We are all thinking of you and praying for you.
When I first started my Abx, I thought I was going to die. I am doing much better. Not perfect, but so much better than I was.
The herxing was horrendous and my head felt like someone was stabbing me with a knife. I had heart issues and body pain constantly. Dizziness, vertigo, tinnitus and panic attacks. Heart symptoms and buzzing, shaking, sensitivity to everything.
I thought I could not make it. I never new constant pain like this before. But, I kept telling myself to be a fighter and told myself that the herxing was actually all the bad stuff being killed.
You can do this. You have everything to live for. A husband and a wonderful family. It's normal to feel so completely helpless, but I kept reading here about all the many success story's and it has helped me.
You can be one of those success story's. Many of us have been where you are and we want to help you.
You need to call your doctor or local home health and tell them what you are feeling and get some help.
Please write back
Does your doctor know this is how you are feeling? Have you told your doctor how desperate you are?
Please hang in there.
Posted by Lymetoo (Member # 743) on :
Brandi, please listen to everyone here. You need to be there for your kids. They are the most important things on earth.
I know this disease is rough, but you can do it. One step at a time.
Go easy on the meds. Taking more won't kill you. It will make your herxing worse.
I hope and pray you can see your way to staying on earth with your family.
Posted by KS (Member # 12549) on :
I have sooo been where you are.
2 years ago I prayed I wouldn't wake up the next morning I was suffering so badly. I couldn't take care of my 1 and 4 year old and felt many of the things you are feeling now.
I remember telling my mother I was done fighting and was ready to die. She sat at my bed crying and said to me "...what if after 6 months of treatment you were able to be outside running around with your kids and you just gave up now?"
I honestly didn't think I'd live another day and felt so alone. In my mind I thought "yeah lady, you'll see I have no choices here, I'm dying". I just kept at treatment, took it a day at a time and sure enough, with each month of treatment, things SLOWLY started to improve.
Today I am regularly able to run around with my kids and function normally again...something I didn't ever think was going to be possible. However, it was a brutally slow process.
Many of us here have been where you are and know the physical and mental pain you are going thru. We also know there are better days ahead if you continue to fight for your health and proper treatment.
Forgive yourself for being sick and know that you can make up for any lost time in the years to come.
Posted by kam (Member # 3410) on :
You only job right now is to keep breathing. Breath in. Breath out.
Things will get better.
Posted by seibertneurolyme (Member # 6416) on :
Brandi,
If you are feeling worse since you started the Doxy then you are herxing.
Please hang in there.
Sometimes it is better to stop or decrease the dose of meds for a few days to calm things down.
Call a pastor if you need someone to talk.
There is help available.
Your kids need you. Don't give up. People just as sick or even sicker than you have gotten well -- but it doesn't happen overnight. Slow and steady is the way to go.
Bea Seibert
Posted by Dawn in VA (Member # 9693) on :
You are absolutely, positively not alone in your struggle. We understand, we totally get it. Your body will feel like a different one after more treatment and the desperation will begin to lift. You can do this.
If you need to talk with someone today: USA National Suicide Hotlines Toll-Free / 24 hours / 7 days a week 1-800-784-2433
Hugs, dawn
Posted by BC (Member # 20675) on :
I really can't offer anything that others haven't, I just wanted to let you know that there is one more person out there praying for you.
Posted by Dekrator48 (Member # 18239) on :
Brandi,
It seems that you do not even have the mental /physical strength right now to follow our suggestions of getting help....you are at rock bottom.
From the bottom, the only way is UP.
You must let others help you.
PLEASE get your husband on this board...on this thread, so we can talk with him.
God does not cause our suffering.
He does expect that we will do everything to help ourselves.
He did not guide you to the discovery of the cause of your illness, so that you could give up.
Some people are very sick with lyme but will never discover the real cause.
He does expect that we will pray, fight the fight, and be there for our children, even if you can't physically care for them right now.
As others have said who have been in your shoes.....so very sick...the lowest of the low.....they fought one day at a time.....and they did get better.
You are worth it....your children are worth it....your family is worth it.
Posted by JamesNYC (Member # 15793) on :
Brandi,
Have you told your DR about how you're feeling? Has your husband told him? You need to be in the ER, NOW.
Tell them you're having chest pains, and massive headaches, they'll have to admit you. Then maybe you can get someone to actually listen. They will have to DO SOMETHING!
Does anyone here have your phone number?
James
Posted by randibear (Member # 11290) on :
does your husband work? does he have an insurance plan or something that would pay for you and the children?
i assume you're not working.
have you tried goodwill, aide to dependent children, there are some charity christian groups.
i don't think the er can turn you away. i'd pack up and go and sit until i got attention.
Posted by JamesNYC (Member # 15793) on :
Brandi,
Fortunately, you're probably NOT actually dying. If you want to die the ceftin won't do it. It's a cell wall buster, not a cyst buster.
The seizures are known in lyme. My friend has them. She looks like she has epilepsy. But they WILL stop,The heart pain is probably chest muscle seizures, not actually your heart.
This isn't necessarily as bad as it feels. You may be bottoming out. Unless your vital signs are actually dropping, it's probably much more of feeling like dying than actual death.
The whole thing is almost certainly a herx. If you can get on real painkillers you can ride this out.
Also, babs can cause deep, deep despair depression.
You need to find the strength to ride this out. You can't give up on your kids.
James
Posted by JamesNYC (Member # 15793) on :
and what about Medicaid? It sounds like you can qualify.
Does anyone know of any help she can get in Texas? Isn't there a LLMD somewhere near her that will forgo high fees to keep this mother of 3 from dying?
What is wrong with our community?
LLMDs will help you ONLY if you have the $$$ for their extreme fees?
What kind of country is this? With all the "Good Christians" in bible belt Texas, where is the help? Where are the "Good Neighbors"?
Would Jesus stand by and let her die???
This is unreal!
Posted by springshowers (Member # 19863) on :
Brandi I am so sorry you are feeling this way. Everyone has added so much here and i hope it will help you pull out of this..
I agree first off with Pain management. The pain is grueling and I am on Ms Contin and getting some relief is huge.
Second. The malarone has the same ingredient as Mepron. It can cause severe severe suicidal Depression.
The other meds can cause more herxing which can cause more pain and more fatigue and symptoms.
SO I can not help but think maybe you should stop the ABX for now and see if it gives a bit of a break for you.
And get some big time pain killers .
It is amazing when the pain is under control the symptoms feel better too. I think the lyme travels and lives along the nerve lines. So when those are all irritated and inflammed everything is magnified.
I have felt suicidal on mepron and when i stopped the Mepron it went away. I still felt horrible but did not feel as horrible.
The Atoquovone in the malarone is the same as the mepron.
If you read the "MEPRON BLUES" thread it is about that medication that is in Mepron and Malarone.
I hope you find some relief. Me and i am sure the whole community are willing to send you any items you might need to help if you are willing to let us.
Please hang in there and hold on to your family. That is all that has pulled me through many times.
GOD BLESS
Posted by springshowers (Member # 19863) on :
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?
I know it says I live in austin, but I'm in kansas staying with people that "dont understand" chronic lyme. I have no doctors, and have seen an LLMD in denton.
I am not herxing, all these symtpoms were before starting doxy. I've been to er numerous times, they wont admit you if your aren't dying in 5 minutes. And I don't have a regular physician to admit me. They DON"T believe in chronic lyme and will admit me to a psyc hospital if I talk anymore about it.
I'm sorry guys, I don't want to commit suicide, I really don't. I really want a herx to do it so I don't have to. And I'm realixing that ceftin probably won't make me herx enough to do it.
The pain in my heart is not the regular chest pain, it's a BURNING in my heart, and it all started after a major spider bite. The bite spread along a blood vessel and up my stomach to my heart.
Anyway, I'm not just talking about few symptoms here and there, everyday is a living nightmare. I don't want to give ya'll my number, cause if my family hears that I'm this down, they will have me admitted. And I will not be admitted, they have tried that once. I'm just ready to go and pray everynight for it to be over. I just need a way to die that isn't suicide. I've talked to friends, they know how serious it is. They pray for god to take me, that way family will BELIEVE me, will understand that this disease took my life. I'm sorry, I know ya'll want to help. But the nerve pain, and burning, and MS like attacks, plus nighttime is HELL. I can't sleep, when I try to go into REM sleep, my nervious system jolts me awake, brain attacks, severe. I've seen those websites of people in wheelchaires, unable to feed themselves cause of the jerking, unable to find releif from pain, getting 60 pills a day fighting this disease,. I don't want to end up like that, but that's what I look like on a bad day. I loose reality. I was this suicidal before malarone. SEVERE panic, anxiety, these stupid bugs are hiding in my cells. And I read about parasites, detoxing, herxing, changing meds a hundred times. I can't do all that. I swear I can feel something moving in my intestines at night. It freaks me out. I put my hand there and feel something move. I don't have time to do humaworm and I've mentioned parasites to my family, thats when they tried to admit me. It's seriously too late for me. I want this disease to kill me so my family can get insurance and they can get meds for my kids and husband. But it won't kill me, no matter how much I PRAY for it to everynight. I've woking up gasping for air, insomnia like crazy. I've lost 30 pounds....skin and bones. I just really want it to be done. And I don't want to do it myself. I'm not catholic, but the thought of hell scares the **** out of me. I want to be with jesus right now...please please please. I am christian, have done church ministry most of my adult life. But please don't pray for me to survive, pray that god takes me. Enough is enough.
Right now, on doxy 200 miligrams morning, 100 night. malarone twice a day. starting ceftin today.
please pray for god to take me. please please please.
Posted by Brandimc (Member # 22017) on :
The pain radiates up my body, starts at my ankles, then my legs, then my tailbone, then my spine, then my neck, and then my brain. IT's too much. Then my immune system starts attacking itself. I'm dying in agony.
Please, I just want to die. Like a cancer patient, i just want to end the suffering. But my heart won't stop, no matter how much a try and pray for it too, it won't stop.
All this was before starting treatment. My vitals show nothing at ER. nothing. Once this ceftin kicks in and the herxing begins, I'm literally going to lose it.
In texas, I had great support, people donated money and all. But my 3 girls needed daycare and we are out of money. So, I'm staying now with husbands family. They don't get it....far from it.
The bug load is too high...too severe. I'm too sick to do anything. The pain is too much. I refuse to die a slow and painful death where people have to feed me and bath me and watch me wither in pain.
I just need to die. I want to peacefully die in my sleep. Please god take me so I don't have to....please. I'm 3 steps away from my sleeping pills. 3 steps away.
Posted by Renee K (Member # 21220) on :
Brandi Your state of mind is part of the herx, you need to have someone help you, you are not able to do it alone right now
Please listen to the suggestions of all of those on the board
Posted by Brandimc (Member # 22017) on :
ps. I've had spinal tap, MRI"s all those tests...nothing. The hosptial won't be able to do much. The texas version of my test didn't qualify, so I only have Igenix results. My insurance doesn't recognize chronic lyme...except 30 days of pills.
I know this next "attack" is going to be too much for me. It is usually every 4-6 weeks, severe CNS issues, cognitive issues....I feel crazy and insane. For the safetey of me and my family, I need to die. I need to. hopefully god will take me. soon.
Posted by Brandimc (Member # 22017) on :
I promise, I'm not herxing, I can actually think clearly right now. It was before starting treatment I was like this. So SEVERE, I could hardly know what day it was or walk. The left side of my body severely disabled, shaking. I felt the disease slowly go to my brain and my heart.
I've talked my head off to friends....one friend listens and knows how severe it is. She wants it to end also. I can't live like this...my body can't take much more. Either can my mind. Before the meds, My face drooped, I would try eating, and 30 minutes later, I am convulsing on the ground. My brain is swelling, and I can't stand it. The pressure. The pain. It's way to much. My husband is severely depressed just watching me suffer.
he has seen me deteriate to nothing.
I just want it to be over. The herx will probably start soon from the ceftin.
But I will say I appreciate ya'lls help. I just don't think people know how serious my case is. I haven't left the house for months...so sick..sooo severe.
It's crazy how it comes and goes...that's why family doesn't believe me. One minute I can walk, the next my feet don't listen....nerves don't work. it's like ALS or something.
I feel like I have ALS, MS, and lyme all wrapped into one.
Posted by Dekrator48 (Member # 18239) on :
Continuing to pray for Brandi.....
Posted by Dekrator48 (Member # 18239) on :
Brandi,
PLEASE do just one thing right now....call your LLMD and explain how desperate you are feeling right now.....you can do it.....make the call.
Posted by luvs2ride (Member # 8090) on :
YOU ARE TOXIC! INFLAMMATION IS CAUSING YOUR PAIN!
Sorry to yell. I'm not mad, but I am so far down the list I'm afraid you won't see or hear me.
Inflammation is the thing causing your symptoms. Something is causing the inflammation but right now you just need relief.
Anything that will stop inflammation.
Here are some free or nearly free things to try. You must do these, but know these may not be enough as you are in severe pain. Still they will help.
#1-Anti-inflammatory diet pronto! Veggies. No animal products at all. No sugar. No prepared foods that have preservatives, flavor enhancers, dyes, etc.
You really need to go down to plain veggies. I wouldn't even do fruit yet. You can do gluten free rice, quinoa.
Do you have a juicer? You need massive amounts of vit C and can get them from juiced carrots, celery, spinach, etc.
Vit C (buffered calcium ascorbate is best) and magnesium are anti-inflammatory. So is Vit D3.
These are not so expensive.
Lots of water and green tea (hot or cold). White tea is even better. Has more catechins which are very good for the brain.
Coffee enema. Must be organic REGULAR coffe, not decaf. Take 2 level tablespoons in 4 cups of purified water (distilled water is ok, reverse osmosis even better). Bring to a boil and then cool to room temperature and strain out the grounds.
Put in an enema bag and fill bag with 1/2 the coffee. Lay on one side and insert the coffee. Try to hold for 15 mins (LOL). Expel and repeat with the remaining coffee while laying on the other side.
The enema should do wonders. The vegan diet and the juices should make a big difference within 2 weeks.
Beyond that, I can only suggest a good integrative doctor. You could benefit from IVs of glutathione among other things.
Just today I received my Blaylock Newsletter and here is just one article I read that could apply to you.
TEA PREVENTS NEURODEGENERATION
Much research has been conducted on the ability of tea, especially green and white, to protect the brain and spinal cord cells and to restore function after damage.
Teas contain a number of compounds, but the most interesting are the catechins, which include epigallocatechin galate (EGCG). These compounds have been shown to reduce brain inflammation, act as powerful antioxidants, protect blood vessels, and chelate (remove) iron.
The ability of EGCG to bind and neutralize iron's powerful toxic effects on the brain may play a major role in this protection. We know that in most neurodegenerative diseases, such as Alzheimer's dementia and Parkinson's disease, iron accumulation occurs early in the process, even before the earliest symptoms begin.
Drinking white tea several times a day, either as hot or iced tea, can offer a great deal of protection and healing for the brain.
White tea has the highest level of these protective chemicals and the lowest level of neurotoxic fluoride and aluminum -- black tea has just the opposite mix.
Tea is also high in quercetin, which is a powerful antiinflammatory and has been shown, in higher doses, to reverse paralysis in experimental spinal cord injuries.
Half of the animals on a high dose of quercetin were able to walk, compared with none taking the placebo.
Quercetin is also a powerful iron chelator and reduces excitotoxicity, a major mechanism in brain and spinal cord injuries.
Brandi, These are inexpensive options that you can try right now. Please do!
Adding my prayers for you!
Luvs
Posted by WildCondor (Member # 434) on :
Brandi, Your life isn't over, it just seems that way. It sounds to me like your symptoms all flared after you gave birth. This is very common with Lyme patients and can cause the feelings of doom you are describing. Hormones can cause post partum really bad in Lyme patients and flare all these other symptoms as well.
Do you, or does anyone here know if you have a decent LLMD? I wonder if your doses of antibiotics are strong enough, and if you have supportive measures in place to handle your symptoms, things like..B12, anti-depressants, pain killers, magnesium, anti-inflammatory meds, etc) to carry you through this time and control your symptoms. Ceftin is not a cyst buster. Flagyl is. Magnesium supplementation will help the twitching, mag malate or mat tab SR. Vertigo can be controlled too, as well as all the other symptoms you describe. Be careful with tea, as the caffeine can make all your neurological symptoms worse. I would just stick to a plain diet, low in sugar for now. A detox might make things worse as well. It doesn't sound like toxic stuff to me, sounds more like treatment is inadequate and/or supportive measures are lacking.
Don't give up okay. WE DO UNDERSTAND. I know you feel hopeless, but there is always hope. If you have been sick only for 4 months you can get better, people sick for 10 years can get better. Many of us have been right where you are and we climb out of the darkness and we do win the fight. You sound overwhelmed right now, which is understandable. Try to take things one day at a time, without thinking about all your circumstances at once. Those kids need their mother, so you should probably be that much more determined to fight to get well. Where is your determination!!
We will do what we can to help, but you must be willing to fight. That has to come from within, even with the pain, it has to be there! Stay strong..let us know how we can help. Post your meds and doses here too. Thanks! Posted by luvs2ride (Member # 8090) on :
Green and white teas are naturally decaffienated.
Posted by randibear (Member # 11290) on :
what did the doctor say in denton? i go to him and he's great. i drive about an hour or so and have to pay for out of pocket. you're right tho, he does not take insurance and office visits run around 175.
Posted by Dekrator48 (Member # 18239) on :
Brandi,
Are you saying that you saw a LLMD in TX, but do not have one in Kansas?
I do not know what state Denton is in.
Posted by imagine2 (Member # 3136) on :
Brandi, Many, many lyme patients feel like they are dying. Please know this and that you will get through this awful time.
Lyme symptoms come and go, the inflammation, toxins, etc. I know you are discouraged, in terrible pain, and feeling overwhelmed, however, there will be a shift.
The symptoms wax and wane but when the symptoms are at their most unbearable, its difficult for us to see that they will definitely get better and you will again get a break. Happens all the time.
You DO have the strength inside you and are surrounded by people here who KNOW what you are feeling.
Please listen to the wisdom of this group!!
Tender hugs!!
Posted by randibear (Member # 11290) on :
denton, texas, north of fort worth.
Posted by Robin123 (Member # 9197) on :
Reading through what you've written, it seems to me that one huge issue is lack of understanding in your family and in the medical community about what's going on with you.
Is there anyone you can think of who might be on your side there and able to listen to what everyone is saying here about what may help you medically get through this? A friend maybe?
If so, is there any possibility that person could come online here to talk with us?
I think you need some support.
You say your husband is depressed about what's going on. He could be part of your team, if he was more aware of how treatment works to address the illness.
Have you called your LLMD office to tell them how you're feeling? Could they prescribe you some pain med and possibly an anti-depressant? Could you ask them who you could talk to in your area who could be supportive?
Also, I think people here would be certainly willing to talk with you by phone and give you support and also medical knowledge about the process of getting through these illnesses.
Getting through this is also in how we talk to ourself. Like,
I'm going to make it through with some help from my friends. I'm going to learn how to make it through. Even if others don't understand me, I'm going to learn how to make it through. I'm going to pick up the phone and find some people to help me through. Step by step.
Posted by Pinelady (Member # 18524) on :
I just saw you post about the movement in your intestines. I BELIEVE YOU!! I have been where you are..praying to die....until I started the salt/c protocol and started getting these MONSTERS out of me.
I had 20' worms exit and a very large tapeworm along with numerous other parasites. When I first got sick I couldn't walk or talk.
PLEASE try the salt/c because it puts the parasites into osmotic shock and it chases them out of your body.
I will hold your hand and try and guide you thru it. It works much quicker than the Humaworm. PLEASE TRY...it is cheap and can start moving you into getting better.....I am praying that you will try this...I am here for you,
Gael
Posted by Topaz (Member # 20216) on :
Brandi, my heart is breaking for you. I know it feels like you can't take anymore but life is so LONG. And so many things change! You've got many more years to go. Your situation WILL change, it always does. That's one thing you count on...NOTHING stays the same.
With that being said, two years from now, you could be looking at your kids and smiling and saying how happy you are that you are feeling so well and that you didn't end your life. For real! I know it doesn't feel that way right now but please please PLEASE give yourself(and your family) a chance.
You need to be away from anyone negative right now, anyone doubting your emotional and physical feelings. Try to surround yourself with positive people.
You also need to beg, borrow, or steal in order to get the proper treatment. You are worth it. You need to stick around for those children of yours.
Many many good thoughts being sent your way.
Posted by AliG (Member # 9734) on :
The Malarone causes the depression. Most who have taken Malarone or Mepron have felt what you are feeling.
Trust me your family IS NOT better off without you. You can not imagine the horror that haunts children for the rest of their lives when one of their parents abandons them by taking their own life.
That's NOT the answer!!! You WILL get through this!!!!
Repeat these words: This too shall pass..This too shall pass..This too shall pass!!!!
It seems like this will never end but somehow you will get through this & you will be a stronger person for it.
Please call your doctor & tell him/her EXACTLY what you are feeling/experiencing. They may want you to change your meds.
Might they have said "cell wall inhibitor"? Ceftin is NOT a cyst buster. As a matter of fact, it did absolutely nothing for me so I wouldn't count on feeling worse.
Drink plenty of water to flush the meds & toxins through your system, you can squeeze some lemon in it if you want.
You ARE being treated, whether it's a "LLMD" or not makes no difference as long as you get the treatment you need. Your doctor is Txing you for this & that's a GOOD thing!!!! You are very fortunate!
A Herxheimer reaction is caused by the release of toxins from the die off of spirochetes. It causes a worsening of existing symptoms and sometimes new symptoms.
It usually hits you within a couple of days after starting an ABX that targets Bb and then becomes cyclical. With each herx cycle you should feel a little bit better & a little less worse as they progress.
If you can, try to get as much sleep as you possibly can right now & keep up your fluid intake.
With Babesiosis, the Tx crushes you like a sledgehammer or a Mack truck but you WILL feel SO MUCH BETTER when you get through it.
If you start a thread to see what others are feeling while treating Babesia, I'm sure you'll find that you are SO not alone.
You can do a search up top for Mepron or Malarone & find threads from others who've BTDT. It will help you see what's what, what will go away and about how long it might take to feel improvement, etc...
Hang in there! We need you too! THIS TOO SHALL PASS!!!!
If your family is not supportive, get them to watch "Under Our Skin".
Up at the top of the board there's a number for the suicide prevention hotline. I'd call it before you do anything that you might truly not want to.
Herxes in Neurological Lyme can also cause an awful lot of symptoms, depression being just one of them.
You're being treated...THIS WILL GET BETTER!!!!
When did you start which meds & what are the doses? What supplements are you taking?
I'm sorry if you already said this & I missed it.
Also keep in mind, it seems that different meds may cause different herxes, Ceftin MAY not be the problem you are anticipating....
Please hang in there with us Brandi!
Hugs & Prayers, Ali
Posted by bettyg (Member # 6147) on :
brandi
brandi is going to a good llmd in denton, texas trained by dr. burrascano.
i just called his office; he's on vacation until oct. 5th;
i called the bck up; after hours so no one there...
i read this post last night and copying her 1st post here and will EMPHASIZE the paragraph where she talks of her MOM COMMITTING SUICIDE WHEN SHE WAS AGE 5 OF OVERDOES OF PILLS ...... ***************************************
Reaching Out To Everyone...My Story
Michele Member Member # 13669 posted 28-09-2009 12:36 AM
Sorry if this should be posted somewhere else. Please let me know..
Thank you all for being here.
Back in August I posted asking for advice regarding an upcoming appt with my llmd and the fact that I hadn't quite followed my protocol. I received some good advice and thought I would follow up and reach out for yet some more support.
Most of my family and co-workers are tired of hearing about LD and how I feel (even though I try my best not to complain).
I've never really posted my story (I guess I thought noone would really want to listen). But, maybe if I let you all in I'd feel a sense of belonging.
So here goes...
My journey with LD began September 8, 2007 when my family (me, my husband and two kids)were attending a family reunion in TN. We spent a total of 6 hours outside at the picnic!
I sprayed everyone with Off upon arrving! On the way home (a 3 hour drive) on of my relatives called to tell me she and a couple of others found several ticks on them and to check everyone upon arriving home.
I checked everyone and did not find any. Everyone changed into their pjs and wet to bed. Needless to say....
I DIDN'T HAVE ANYONE CHECK ME and I fell asleep with the same clothes on. So....I have myself to blame for the events that would follow and for allowing this to happen. If only I had checked myself!
I found a tick on me on 9/10/09 (2 days after the reunion) after a hot shower. There was a red area on my chest above one of my breast and was itchy.
I couldn't remove it due to the location so I asked my husband to help. He tried a couple of times and told me it was a mole. I got a magnifying glass and said "see that mole has legs!"
He tired again and got it. It was the tiniest tick I'd ever seen. I placed it in a baggie for some reason.
I went about my life and 10 days later on 9/20/07 the spot was itching like crazy . I went to look at it and saw a large circular bullseye rash. I looked it up online and LD came up everywhere.
I went to my doctor the following morning (9/21/07). He measured the rash and documented it and put me on a 14 day round of Doxy. He said it was only pre-cautionary and that it probably wasn't LD. I was relieved and went on my way with script.
I took Doxy as prescribed for 14 days. I felt okay but once off the Doxy felt worse so I went back to doctor and he put me on penicillin. Penicillin did not help at all so he put me on Doxy again.
Went back again on 10/16/07 feeling like I had the flu and was given Prednisone.
Went back again on 10/222/07...More Doxy.
Went back on 10/23/07 feeling extremely weak, painful muscles, headache, dizzy, more flu-like symptoms x 10, crying uncontrollably. Doctor admitted me to the hospital. They ran every test under the sun including a spinal tap. All came back negative.
I was discharged on 10/25/07.
Re-admitted 10/28/08 with a spinal tap headache.
Remained in bed for 7 days until headache subsided.
After that I saw another doctor locally who believed I had a tick borne illness and treated me with 30 days of Doxy and several steroid shots/dose packs.
After many physician visits (including a infectious disease specilist who diagnosed me with CFS and wanted to put me on Ridalin) a co-worker recommended I see the LD physician her husband was seeing.
I made the call and had my first appt with him on 1/30/08. He felt without a doubt that I had a tick borne illness and told me he thought he could help me. I left with much information and my scripts.
I went back home and started my meds...long story short for the past 2 years I've been on and off meds but haven't been able to stay on the regimen prescribed by llmd due to other issued popping up (gut and bladder).
To complicate things I have always had an issue with taking medication due to my mother ending her life at the age of 25 via pills (I was 5). ***********************************************
So, here I am now. I went to my follow-up appt in August and I explained everything to my llmd. Including the reasons for not taking my meds. He said he understood.
As of today I'm still able to work my full-time job and get my 11 & 9 year old where they need to be and keep my household somewhat in tact.
My main symptoms are muscle aches, joint swelling (mainly in my ankle), joint pain (toes, knees and thumbs), some back pain, head pressue, ear pressure, some diziness but comes and goes, feet hurt. Blood tests now show elevated candida levels and now thyroid problems (hypo).
I have never been a very calm person nor have I been an individual with much determination. Two characteristics that seem to be pertinent to conquer this disease.
So, here I am I filled my scripts from my August appt but to scared to begin them. I have fears of side effects, c-diff, herxing, not being able to work and help support my family, losing my mind and doing what my mother did so long ago.
I do believe God brought me to this situation for a reason. I just wish I new the reason and that I could find someone close by to be a "cheerleader."
My kids pray often for me to "be like I used to be." When I ask my husband for help with my fears and with remembering to take my meds he tells me "I'm a grown up." Although, he does believe that I have ld and supports me when I'm feeling well.
I'm not sure of my reasoning for writing all of this other than to just get it out there.
Very tired now...going to bed. Thanks everyone for listening.
Posts: 75 | From Indiana | Registered: Oct 2007 | IP: Logged | **************************
brandi, please call the 1-800 suicide no. given by another member above; they are trained to help folks who are going thru what you are right now.
your llmd is gone for 1 wk; his stand-in is off work....after hours.
but if you call your denton llmd phone no., they will give you the next phone no., and she will give you another no. to call after hours...
brandi, you ARE LOVED by us; we care very much about you and your 3 young children.
we pray to god to carry you like footprints in the sand and get your thru your deepest dark hours right now.
brandi, do NOT give up; your children need you.
my only sister died at age 41, brest cancer to liver when her 2 kids were: 11 for daughter and 14 for son.
my brother's died at age 40, early onset ALZHEIMER'S which she had 8-14 years, and leaving 2 kids: son 13 who never knew his mom well and daughter 16.
both families of the YOUNGEST child have had major problems in their lives; both turned suicidal and the son 3-4 times even missing his sister's wedding.
if you take your life now, your pain is over, but the pain you have caused your CHILDREN WILL HAUNT them the rest of their lives ....
brandi, i love you; please stick around so we can help you thru this to LYME REMISSION spending quality time with your kids/husband.
is there anyone who SUPPORTS you where you could go live with them; you're in negative environment since they don't understand nor do they want to of lyme, so they are dragging YOU DOWN not up. Posted by Brandimc (Member # 22017) on :
I started doxy at 300 m two weeks ago. started ceftin today. Been on malarone one week.
I appreciate your feedback, but i don't FEEL like I'm dying...I am dying. I have read so much about natural vs. antibiotics and how antibiotics done work and how it just suppresses the immune system...about all the different protocols. I do feel that I am in toxic overload...I can feel the toxins rotating in my body. My body does not know what to do. I just got chlorella in the mail today. Don't know what it does but saw it so many times online. The bugs are in my lower spine, eating at my nerves. I am going to wake up and not be able to walk, be paralized. It's one thing if this was only Chronic fatigue, but it's come fast. Had rash 10 years ago...had vertigo since. Only symptom until 4 months ago. Then rapidly declined.
I really do appreciate yall's encouragement but I was waaaayyy suicidal before treatment. It's not the drugs or the post delivery depression.....its that I know my life is over. And to know that I passed it on to my children and husband.
Ok Sorry to repeat myself. But I'm desperate to die. desperate. yes, my LLMD is in denton, texas. He is ok, but my case is so serious I doubt he is going to continue with me. I know 3 people that have moved on from him to california LLMD's cause he wasn't able to help. And I'm too sick to go back to him for follow-up blood work to check liver stuff. Much to sick. We picked him cause we were in austin at that time. There is no way for me to survive killing this bug.
Posted by seibertneurolyme (Member # 6416) on :
bettyG,
I think you have 2 different people mixed up. Do not think Brandimc is the same person as Michele.
Brandi posted several weeks ago about Dr C in Missouri who only prescribed 50 mg of Doxy to start. That thread may have been pulled -- not sure. Anyway she has obviously seen a 2nd LLMD now who also prescribed Malarone plus Doxy and Ceftin?
Bea Seibert
Posted by Dekrator48 (Member # 18239) on :
Brandi,
Please pm me your phone #.
Where are you at in Kansas?
Please......I know you cannot see your way out of the darkness and that is why you need someone else to help you.
You DO NOT need to die.
You are only starting treatment, so you will get better.
I know it seems like you will die before you make it that far, but many others have felt the same way and they made it.
Please.....let me help you....let all of us help you.....and let God help you recover.
Posted by Dekrator48 (Member # 18239) on :
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.
Posted by Dekrator48 (Member # 18239) on :
Brandi,
Could you pm me your address and name so I can send you some things?
Posted by Robin123 (Member # 9197) on :
Brandi - I think you need to get in touch with someone here - Dekrator is offering to talk with you. She is also a nurse.
Posted by Brandimc (Member # 22017) on :
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 by Robin123 (Member # 9197) on :
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?
Posted by Dekrator48 (Member # 18239) on :
I'm talking with Brandi on the phone.....
Posted by BHealthyNow (Member # 22537) on :
Glad to hear that dekrator.
Posted by Liz D (Member # 16739) on :
feel so useless but sending hugs and prayers.....
Posted by Dekrator48 (Member # 18239) on :
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
Posted by liesandmorelies (Member # 15323) on :
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:
Posted by AliG (Member # 9734) on :
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
Posted by Brandimc (Member # 22017) on :
I will go to sleep and keep ya'll posted for tomorrow. one day at a time. b
Posted by Robin123 (Member # 9197) on :
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)...
Posted by Pinelady (Member # 18524) on :
Dekrator if you would please get her address so who can may send her some things to help out. Thanks.
Posted by Brandimc (Member # 22017) on :
I will talk to my doc. he is out of town this week, but will talk to him when he returns.
Posted by JamesNYC (Member # 15793) on :
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
Posted by bettyg (Member # 6147) on :
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...
Posted by bettyg (Member # 6147) on :
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 Posted by Lauralyme (Member # 15021) on :
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.
Posted by Melodymaker (Member # 16434) on :
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.
Posted by Brandimc (Member # 22017) on :
thanks guys. I feel better today. had a decent night sleep. Will try some salt/vit c. where do I get coffee enema's? that sounds so strange.
I will lay off the molarone for now...probably making my mental state worse.
one day at a time...right.
This is just so hard...and gets worse every day. But I made it another day. thanks again.
Posted by gwb (Member # 7273) on :
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.
Gary
Posted by gwb (Member # 7273) on :
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! : )
Gary
Posted by Brandimc (Member # 22017) on :
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.
Posted by Dekrator48 (Member # 18239) on :
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.
Posted by Melodymaker (Member # 16434) on :
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!!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by bettyg:
brandi is going to a good llmd in denton, texas trained by dr. burrascano.
trained by dr c of mo
Posted by glm1111 (Member # 16556) on :
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
Posted by Silverwolf (Member # 9196) on :
<<<<< Brandi' >>>>>,
Praying for you and your loved ones!!!
This is a good bunch of folk here, their info' will help!!!
Jus' Silverwolfi-Swampthing
Posted by Brandimc (Member # 22017) on :
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.
Posted by sutherngrl (Member # 16270) on :
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.
Posted by glm1111 (Member # 16556) on :
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
Posted by Silverwolf (Member # 9196) on :
<<<<< 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!!!
Posted by Haley (Member # 22008) on :
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.
Posted by Brandimc (Member # 22017) on :
thanks everyone.
Posted by Dekrator48 (Member # 18239) on :
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
Posted by Robin123 (Member # 9197) on :
Hi Brandi - good to see you posting here!
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.
Posted by greenbow (Member # 21463) on :
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
Posted by bettyg (Member # 6147) on :
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... Posted by Lauralyme (Member # 15021) on :
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
Posted by randibear (Member # 11290) on :
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!!
Posted by just don (Member # 1129) on :
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!!!
Posted by Carol in PA (Member # 5338) on :
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
Posted by IckyTicky (Member # 21466) on :
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.
Posted by Topaz (Member # 20216) on :
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. Posted by joalo (Member # 12752) on :
I was just thinking about you and wondering how you are doing tonight.
I hope you are feeling better!!
JoAnne
Posted by Robin123 (Member # 9197) on :
randibearcare to the rescue...
Posted by Dekrator48 (Member # 18239) on :
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!
Posted by joalo (Member # 12752) on :
Brandimc,
Please check in and let us know how you are doing.
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As a matter of fact, it did absolutely nothing for me so I wouldn't count on feeling worse.![[kiss]](graemlins/kissing.gif)
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hugs/kisses to you both...
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