I'm too depressed and can't take this anymore. I've ruined my marriage, won't see our second child or our
baby grow up. I need to sign off on life and go to heaven so I won't suffer anymore, but mostly not be sad
about the life I had before and what I have now. I have no reason to continue life. If no one cheers me in
30 minutes I will end it. Thank you to everyone who has helped me or supported me in anyway.
[ 11-20-2014, 05:10 PM: Message edited by: Lymetoo ]
Posted by poppy (Member # 5355) on :
You had a doctor appointment. What happened? You are just at the beginning of treatment. Don't give up now. It will get better, I promise. A lot of us were in very bad shape and long untreated, but we are still alive and functioning, if not cured.
Talk to us, call the suicide hotline. DON'T GIVE UP.
Posted by Lymetoo (Member # 743) on :
Hang in there, Dale .. Tell us about your Dr's appointment. How did it go?
Posted by lookup (Member # 44574) on :
Hey DaleS- stay with us. You are precious. Stay in
touch. Posted by Jessiep (Member # 35399) on :
Dale, Think of your kids!! They need you. Please get help. Don't let this disease win!
Posted by poppy (Member # 5355) on :
I don't understand. Your last post on another thread said the doc appt went well and you had hope.
Posted by Silverwolf (Member # 9196) on :
<<<<< DaleS >>>>>,
Please keep fighting,don't let this illness win. Keep going, yeah,it is discouraging sometimes, but lease please,please don't give up hope.
Please keep talking to us,and don't end it all. Is there a Minister, a Priest, anyone you can talk too???
Think of your children,suicide is a horrible thing for family to go thru. Our family, hubbies and mine,has lost three loved ones who took their life. Please don't!!!
You can fight this, please respond and let us know you are holding on...
Jus' Silverwolfi ...praying
Posted by linky123 (Member # 19974) on :
Dale, we care about you and are here for you whenever you need it.
Hang in there, we understand here on lymenet. Please stay with us.
I am lifting up a prayer for you right now. Posted by jlcd1 (Member # 18138) on :
Dale, I think a lot of us have felt like this one time or another, during herxing which in the beginning, its very very hard to get through. Please hold on....praying for you!! You can do this!!!!!
Posted by dogmom2 (Member # 23822) on :
please take this a day(or a moment) at a time. I want to leave sometimes too, but don't have to do it today or tomorrow, or ever.
please find comfort/support wherever you can, you are worth it. Hoping for the best for you.
Posted by Maia_Azure (Member # 44330) on :
I sent him a message earlier but it is unread still.
I hope all is well here..wish I had responded to his private msg earlier, but I have been sick all day in bed.
I don't think there is a single one of us who hasn't felt this way. I frequently imagine driving myself off a road. Or hoping another car hits me.
But talking to others with the same problems helps me to keep going. I tell myself its the lyme talking, not me!
I too have many relationships I need to repair because of Lyme. It ended my last relationship, he thought I was lazy and had mental "sickness." He also made fun of me for gaining weight.
While I never want to talk to THAT person again, I have plenty of friends and family I am estranged from. My job now is to get better, and worry about the others things later.
Getting well is what is important now, not all the things you can't do right now.
Posted by Lymetoo (Member # 743) on :
I think the authorities have been called. We'll just have to hope and pray that they got to him in time.
Posted by Robin123 (Member # 9197) on :
Dale - if you're still reading here, most if not all of us have felt as you do. This illness is h*** and we know that.
However, just because you're feeling this badly today doesn't mean that you will always feel this way. It is possible to turn it around with treatment that you respond to.
Ditto what Maia said - it's about working to get well, not dwelling on everything you can't do or think you won't be able to do - it's really not even about your marriage right now, or most of the things in life you'd like to do - it's about you, and getting you better.
You cannot predict the future - it could be a lot better than what's happening right now. You will need to find what improves your situation.
Posted by poppy (Member # 5355) on :
Sure hope they got to him in time.
Re-reading it, sounded more like family issues. A lot of us are familiar with that. And he has apparently been sick for at least 3 years, maybe more. People who have courage may still be worn down by lack of correct diagnosis and treatment, and all the problems that come after that with work and family.
Posted by mamalicious (Member # 43611) on :
I had some texting back and forth with him for a while right after his post then no response to the last couple.
Dale, let us know you are ok! Hope you are in a better place today.
We really have all struggled with what you are going through!
Be strong!
Posted by Phoiph (Member # 41238) on :
He replied to my PM at 6AM this morning...
Posted by jlcd1 (Member # 18138) on :
Well thats good news
Posted by poppy (Member # 5355) on :
Yes, good news.
A lot of us have been where you are now, Dale. Any problems you are facing will be familiar to us, so let us help if we can.
It sounded to me that you really didn't want to end it, that your last post was a cry for help.
It was a comfort to me at times in the past, and even today, to be reminded that it is only necessary to get thru today. Enough days of getting thru may lead to something more tolerable.
Posted by randibear (Member # 11290) on :
I've been there too. stood in the shower and just squalled...
it's not easy.
Posted by lymeboy (Member # 24769) on :
Have I ever been here. My life has been destroyed by Lyme. It can tear a family apart, and mine has been no exception.
Poppy couldn't be more right. There are times when every day is a challenge with Lyme. You have to get through the day in front of you, and tomorrow is usually better.
YOU HAVEN'T RUINED YOUR MARRIAGE. Lyme has made your life terrible and I know it feels unbearable right now. Do not blame yourself for getting sick.
I was bed ridden a few years back. My neuro symptoms were out of control, and I was only just beginning to get a comprehensive understanding of Lyme and all of the nonsense that comes along with it (politically, physicially, financially).
I wanted to die many times and I said so on here more than once. But I stuck with it and kept changing docs until I found a good one. That doc got me to a good place, and when my money ran out, and insurance was cancelled, I was able to self treat without antibiotics, and while there is more for me to do, I am working full time and SOMETIMES even enjoying my life.
I still have days where I don't want to be alive. This disease sucks. I'd give anything to be rid of it.
But I'm not even close to where I was a few years ago. I just got another side job, so I'll be able to move soon and leave this awful place and all of its bad memories behind!
A side job was unthinkable 2 years ago. In fact a full time job wasn't possible until a little over a year ago.
I'm living. And I think I can make it better as long as I keep my head up and keep treating in any capacity that I can.
Believe me, there was no one that could convince me that things would get better a few years back. But they did. And I know I can get better.
You WILL get through this. And you'll learn a lot. And you WILL see your children. Things are going to be ok, however screwed up they may feel now. If you want to swap screwed up stories, feel free to PM me. I have a LOT. And plenty of screwed up stories from before my Lyme days. You are not alone, though you may feel that way. We are standing here with you. Don't give up.
Posted by Sammi (Member # 110) on :
DaleS, you have gotten some very good and kind responses. Everyone here understands how you feel. Some days you have to just get through the next minute, then the next, then the next.
Going through treatment can be so challenging. Know that tick-borne diseases can also cause depression and many brain-related symptoms. This can make you feel like you are not yourself. It is not you, it is the disease. Please speak with a counselor and/or your doctor. Good help is available. You are not alone.
Please let us know how you are today. We care.
Posted by Brussels (Member # 13480) on :
A very good reason to live is your child.
Lyme can destroy families, ruin anything you find is precious. You can be sure, it is not YOU.
Many of us here are survivors. Maybe the majority of us here even???!!
The pain you have is NOT only yours, it belonged to so many of us, before you even fell sick.
You never knew about such suffering either, before you fell sick, right?
Don't blame the others, it is just the way things are. You didn't care about us, old lyme sufferers before you fell sick with it, right?
Well, most people can't understand us when most docs say we are all fine. They think it's only in your mind!
Just hang on!!! Your children deserve to have a father.
Imagine they fall sick with lyme later, and no one listens to them, to their pain, and docs say they are healthy, and faking all up. At least, they will have a father to back them up!
My daughter fell very sick one year after I almost died, with lyme. If I had let myself die, maybe she would also be dead, or at least, handicapped.
Everyone here had days with 20, 30 different symptoms, or even more in the same day!!!! Do you think we are all crazy? Nope, unfortunately not.
Some days are better, some others, you start thinking you are not even sick anymore. I swear!
My daughter and I are healed, back to life for more than 5 years now. And so are many here.
It was not an easy way, but only today, looking backwards, I can see how much this disease taught us, both of us.
Be there for your children. Even if you ruined you marriage, your children deserve you as a father. No one could understand what me and my daughter were going through, years of treatment, crazy nonsense treatments, without stop.
It paid back. No one now remembers she had been once so sick. She does, though.
If all these children with lyme are fighting for their lives, so you can do.
Posted by DaleS (Member # 44571) on :
I'm sorry everyone. I just want to thank you all for reaching out to me. I am so sick but also depressed. Thank you for everyone that texted me, pmed me, prayed or responded. I'm still suffering like crazy but alive. One of the hardest parts for me with this
disease is that it is so lonely. Only you guys understand how much this sucks and what its like. I feel like no one else gets it.
The llmd I saw is having me do a detox. Then I'm going on abx. Just got tested with igenex. I pray that it is some strong crap because I need it bad.
I'm sorry to put everyone through that. I feel guilty, ashamed, embarassed etc.
Today the headaches, ear ringing, popping noises in my head, upper spine pain and head pressure are bad. My feet and ankles are weak because of the neuropathy. I've been using pepppermint oil for headpain, seems to help a little. I just am worried I'm sick
beyond repair.
Posted by rowingmom (Member # 41213) on :
Do not feel guilty, ashamed or embarrassed. Most of us have felt what you are feeling now. Good for you to reach out and not act on impulse.
You can get better, just please don't think that you need to hit this hard. You need to go slow or herxing will set you back.
Killing bacteria increases brain inflammation. which produces depression. You need to address inflammation and detox ALOT.
Our daughter has healed from multiple diagnoses of Asperger's, Tourettes, ADHD, motor delay and PANS/PANDAS. Her autoimmune markers have declined to zero. All with treatment for lyme/bartonella and babesia. She was under an LLMD's care for 2 years, but we have now weaned to herbal protocols that seem to be working extremely well for her in addition to plenty of detoxing and probiotics.
In treating myself (with herbs/detox/probiotics) for what our LLMD feels are the initial infections which were passed on congenitally to our daughter I have resolved my own symptoms of derealisation, rage, palpitations, anxiety attacks, foot pain, tendon pain, suicidal ideation, brain fog (so bad I actually forgot how to turn on a light switch)and exercise intolerance.
You can get better, but you have to think outside the mainstream. Your LLMD will help to get you started, but you have to do your own research as well. Be your own advocate and you will heal.
In my opinion toxins in our food and medicine (especially vaccinations) are taking a toll on everyone's immune systems, making us more susceptible to chronic infection. People are effected more by depression and chronic disease than they ever have been.
You will learn a lot during this journey of healing you are about to undertake. You will be a source of knowledge for your children, and they will need that knowledge if they are to grow up healthy and strong. Start reading and researching.
I used to think these sites were run by kooks, but they are right on the money:
Cancer is also the result of a malfunctioning immune response, just like the chronic infections we are all dealing with. The healthier your body, the more capable it is of addressing infection.
Posted by randibear (Member # 11290) on :
we have all been there. makes it worse when you have family and spouse who think you're crazy ot a hypo or jus wantng attention. then add docs on top of that. no fun at all...
nobody but the people on this board understand. you can rant, rave all you want.
we understand truly...
hugs..
Posted by lookup (Member # 44574) on :
Sooo good to hear from you DaleS! No reason to feel
guilty or embarrassed. You are not alone--so feel
free to rant away. Do you think you could
manage a coffee enema?
Posted by LilaLee* (Member # 43649) on :
DaleS, i had your same symptoms (and others as i'm sure you do) and after 6 months of treatment, the
last month on IV Rocephin, i feel incredibly good, better than i have in years.
I'm still ebbing and flowing but the difference is beyond remarkable. There
absolutely is hope that you will feel good again.
Posted by Lymetoo (Member # 743) on :
You are NOT beyond repair! NOPE! A positive attitude will take you a long way when you have Lyme.
Posted by norcal (Member # 29829) on :
DaleS,you need to understand alot of us had these feelings once upon a time. I just spent this whole day thanking God that I am finally well after the nastiest life experience that was Lyme. Trust that this is treatment rearing its ugly head. Can you ask your doc if maybe cutting back on meds is an option? I am a male ,I get it, I am available via Pm.
Posted by linky123 (Member # 19974) on :
We are so glad to hear from you. Do not feel guilty or ashamed, we understand.
I don't know how many times I have been in that dark place and my lymenet friends have been there for me.
We will be there for you too whenever you need us.
Take care and God bless.
Posted by GretaM (Member # 40917) on :
The supportive folks and their kind hearts on lymenet has saved my life more than a few times.
Posted by Lymedin2010 (Member # 34322) on :
Pheeeew, glad your are here.
The best thing for the Lyme migrating symptoms for me were (below) & maybe you can try them too. Always good to add in babs & bart ABX, herbals, & detox as you are. Those are generally the best ABX that I hear from others as well.
-IV Rocephin -Bicillin LA shots -Doxy
Posted by Robin123 (Member # 9197) on :
No, you are not beyond repair. You will repair your body, your life, your relationships. It just takes time and patience, sleuthing, alliance with your doctor, tips and clues from others going through this.
And yes, I hope you will start to slowly feel better as you find what works for you - that's the way it is for all of us - we have to find what works.
In the meantime, don't beat yourself up. I suggest an exercise - write down a negative thought, then counter it.
Example - I'll never get better.---> There's no way I can know the future. I have a right to try to get my health back, and certainly plenty of others have done so.
Example - I ruined my marriage.----> No, I didn't - I am not at fault for Lyme and whatever other infections I have and the havoc they have caused me. Any normal person would have a hard time too, considering the burden.
Example - I feel depressed.----> Well, it could be the illness causing me to feel this way, as it affects my mind. Again, not my fault. I will do the best I can to turn this around.
And whatever statements ring true for you - these are just examples. I find that we can be our own worst enemy. Better to change our thoughts and get on our own side because we need our own support too - it's also an inside job. To forgive ourself for what we didn't do is key.
Posted by DaleS (Member # 44571) on :
Thanks for the support everyone. The truth is I know everyone says I'm not beyond repair, but I know deep down inside I am a lost cause. Even a month ago my meningitis symptoms were a lot less than they are
today. Something funny happened when I got bit by the tick. Every single symptom I've had has progressed rapidly. I know it cant be stopped. I know I shouldn't be posting this but I have faked
epididmitis to get doxy. The first time was last nov and it stopped the tingling in my feet and I felt normal. I did again in june and no matter how much I took it didn't do anything. How would it do anything
now. It's almost like every single symptom I have is progressive chronic. I know I shouldn't have done that . I know this is all from the tick. I just dont know why in june it didnt do anything and now every
day I think how am I alive, that's how bad I feel. Every night I wake up because my upper spine pain, headaches, head pressure, ear ringing, nausea are so bad and each day it is worse than the previous. It's
like this disease is way too strong. I take my supplements and sometimes herx 10 to 15 minutes after. But then they symptoms are just worse the next day. Its like it helped but didn't if that makes any sense.
I only have weeks left, I can just feel it in my body.
I never really had any signs of infection. There were a couple really subtle moments now that I reflect back on what happened. I have always had muscle twitches, especially n my calfs. One night I noticed
they were worse than normal, then they went back to what they normally were. I didn't think much of it because I have had increased twitches before. Then another day I felt like I had a fever very briefly,
but I was so tired since I was getting up for work at 4 am and was sometimes up later since we just had had a baby. Then after that I felt normal. After that I just felt like myself, then one day I had a 4
sharp pain in my left foot. I had no idea what that was. The same thing happened happened to my upper spine, right foot, chest and hands and I had no other symtpoms except my feet tingled right before I went.
Now wherever I had pain I HAVE symtpoms and they are bad. I don't understand why I didn't have symtptoms other than pain. And the pain was random and very short. So then I went to the drs and then I felt
normal. No pain or anything. The areas that I had a very brief pain in are all the areas I'm having health issues. It doesn't make sense. ANd why would I have pain then they symptoms show up after abx.
Is my body reacting to where the infection was and is attacking those areas or do I still have a very bad infection?
I'm not trying to be a debby downer but I can just feel it, that this is going to end badly.
Posted by Razzle (Member # 30398) on :
Dale,
I understand what you are saying and feeling. But I am convinced these bugs (Lyme/coinfections) have a way of influencing our thoughts and feelings way more than is recognized.
Please don't give up. I believe there is an answer for everyone here - including you.
I've had antibiotics trigger symptoms that never went away after stopping the antibiotics (vertigo 24/7). It's the nature of these infections. They get mean & nasty when we try to kill them.
But we can't stop fighting. We can't give in and give up.
Posted by poppy (Member # 5355) on :
You need to put your projecting of the end result on hold. Give your new doctor a chance to help you. And stop analyzing what is happening. This is a tricky bug full of surprises. And lack of response to one drug does not tell you what will happen with another.
Check the support groups listing in the menu box on the left side of the page. If there is one near you, try to make some meetings.
Posted by randibear (Member # 11290) on :
you said you just had a baby. that's a tremendous amount of stress. it will certainly cause symptoms to increase and lack of sleep I another one.
Posted by lookup (Member # 44574) on :
DaleS said "cramps in calves"
Hi DaleS- inner leaf aloe vera by Lily of the
Desert might help that. I find when minerals are low
the first place it shows up, in me, is in my
calves. Aloe sounds so weak and mild- but it is
loaded with bio-available minerals.
Posted by Kudzuslipper (Member # 31915) on :
DaleS feeling well does happen! It doesn't happen overnight. It doesn't happen at the end of abx. It happens slowly. When you start abx you are going to feel worse. Much worse. But then your going to have days where you remember how you used to be! You'll crash again, feel better again, plateau, start all over. Your body/mind might say no more abx and you'll stop for a while... Each time your better days will be better, your bad days won't be as bad (but they will emotionally feel worse because the good days made you so happy) take it one day at a time. And after a while, you'll notice you'll have the energy to do more than just exist! You'll start wanting to do good things for yourself, for me it was exercising, you'll start living again. And that's when you know you are well!
It's a very long journey! I begged my husband to read cure unknown when I first started treating.. He wouldn't, when I was having a bad flair he would refer to it as my fibromyalgia. He didn't read cure unknown til I thought I was better! I was so hurt and confused, and worried that I was showing outward symptoms that I didn't even notice... But they kind generous people here explained to me that "that he may have been to afraid to understand it" Lucky for him I had a relapse after he read it, and he was very different, he did get it.
If you can get your wife to read that book, it may help her understand what your going through and also realize it dies get better. You can tell her it reads like a mystery novel.
I'm really glad you came here. I'm glad you have an llmd.
Posted by Brussels (Member # 13480) on :
Glad you are here with us!!!
Your symptoms look too familiar, Dale. They sound more like herxes than only infection, but probably both.
they sound like the end of the world for you. But believe US, they are very common and we all know what you are talking about!!
You feel crap, and worse, when using killers, specially if you do not take any binders. Everyone here is an expert in herxes (or almost everyone).
Herxes are worse than the disease itself, in my opinion. I lived on detoxing substances when I was sick with lyme.
Without detox supplements, I would be in:
- terrible pains - my digestion would go mad - liver pressure and pain - kidney pain - high blood pressure (no sleep, terror during the night) - ear tinnitus (ringing, no stop) - body paralysis (usually partial) - tingling on many parts of my body, specially hands and legs - nausea - total brain fog - extreme fatigue (bed bound) - heart stabbing pains - heart palpitations - light intolerance to the point of puking - multiple food allergies - electromagnetic sensitivity - feeling extremely cold (hands, feet, whole body) - low body temperature (extremely low) - great anxiety, irritability
In short, I felt like I was dying. I had a clear vision about that. I think I was right, that is why I started a crazy treatment schedule. Like many people here did.
When I found the right binders, life could go on almost as thought I was not sick. The critters kept dying with killers, I used binders for toxins, and I barely had any symptom anymore (just lightly).
--------------
Some people here in lymenet take YEARS to fall sick, very sick.
For me, it took first just 2 months to fall sick, and only about 4 months to have my near-death experience. No more energy to stand up on my feet. Or even sit up.
My daughter went from a normal child, to very fussy the day she got bitten. Her arthritis took just a few days to develop, and she was just 2 years old. The knee pain she had was unbearable, her knee was so big, hot...
We both got encephalitis, my daughter included, from lyme or from multiple tick bites.
Encephalitis is very common. Don't get too scared.
Dale, you are JUST A NORMAL PERSON, suffering from lyme.
It looks like the end of the world, like it looked for us ALL, but it is JUST LYME!!!!
What you are going through, the majority of us have gone through. Some passed away, indeed. But we are here as proof that many survived. And some healed!! I am, and so is my daughter.
I lost teeth from infection, one after another, from weakness. My vision got so much worse, almost all my hair got white.
I'm still alive. The biggest danger in lyme, is suicide. Either you fight for your life, for your children, or for something you believe worths living, or you end up like many, meaning suicide.
that is the danger. Lyme does not usually kill, if you treat it.
If you fight, I promise you, it's been YEARS I come to lymenet, MOST PEOPLE DO IMPROVE to the point they get back to life again, with or without continuous treatment.
But I swear, MOST IMPROVE, no matter what treatment they choose. You see them disappearing from lymenet when that happens.
If you give up, there is no way to improve, I believe, as you can see for yourself. This disease is nasty and strong (for some), and if you fall very fast sick, you are EXACTLY like me and my daughter.
It is not worse or better to fall very sick very fast. It's just that you feel the end is approaching much faster, like you are counting your minutes.
You probably have bad detoxing pathways (like most of us), and that makes infections progress much faster than most. At least, this is our case...
Just hang on, Dale. You're just one more lyme sufferer.
Can you imagine that you NEVER thought about us, who lived what you are living now, a few years ago? That you didn't know about all that suffering, pain, multiple symptoms that a huge lyme community has been going through, for years, decades?
Well, your wife and people around you are like you, a few months ago. They simply cannot know, as you couldn't. It's not an excuse for them, it's just a fact.
As much as you didn't know about lyme before you fell sick, so do the people around you now.
[ 11-22-2014, 06:22 PM: Message edited by: Brussels ]
Posted by Sammi (Member # 110) on :
quote:Originally posted by DaleS: -Even a month ago my meningitis symptoms were a lot less than they are today. -Every single symptom I've had has progressed rapidly. I know it cant be stopped. -I take my supplements and sometimes herx 10 to 15 minutes after. But then they symptoms are just worse the next day. -The areas that I had a very brief pain in are all the areas I'm having health issues. It doesn't make sense. ANd why would I have pain then they symptoms show up after abx. -Is my body reacting to where the infection was and is attacking those areas or do I still have a very bad infection?
DaleS, all of these things you mention are how most Lyme patients feel when starting treatment. It is normal to feel worse, it is normal to have new symptoms come up. It does not make it easier to deal with, but it is good to know that this is normal.
Couple this with having a new baby and being sleep deprived, it can make you feel even worse. It can feel overwhelming.
Are there support groups in your area? If there are, it may be helpful to connect locally with someone.
I still think it would be a good idea for you to see a counselor and to let your doctor know how you feel. As posted before, these diseases can cause brain-related symptoms. They will get better with treatment, but they can be treated in the meantime. So please let your doctor know.
Keep posting here too so we know how you are doing. Hang in there okay?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by poppy:
You need to put your projecting of the end result on hold. Give your new doctor a chance to help you. And stop analyzing what is happening.
- Dale, Many of us here were sick for 10, 20, 30 and even 40 years before finding help for our Lyme disease.
[ 11-22-2014, 07:45 PM: Message edited by: Lymetoo ]
Posted by Rivendell (Member # 19922) on :
Dale,
My decline was very slow - it took years.
When I finally hit bottom, I couldn't believe the symptoms. it was so scarey, so traumatic. No one understood. And guess what - I didn't even know I had Lyme. I had the diagnosis of Chronic Fatigue Syndrome. That diagnosis is even less respected than lyme.
Yes, I had the EM rash several years before, was treated with a few weeks of antibiotics and told that was all I needed. I knew absolutely nothing about lyme. So when I gradually went down hill, I thought it was something else.
and when I hit bottom, I had so much brain fog, that I totally forgot about the EM rash and the lyme diagnosis. That bite was in 1996.
I was bittin again in 2009, had another rash, found this website, became educated and realized it had been lyme all along.
But it wasn't until 2011 that I could see a LLMD because of money. I won my disability case and then a LLMD appeared two hours from my home.
So, I have had many many years of intense suffering. Now treatment is helping me find my way back. But, it has been so hard to kill this stuff. Partly because I have acid reflux and the meds make the reflux worse. So, we have had to be conservative with oral medication. I am considering IV's.
We have all been through H.....!!! I know I have thought of suicide so many times, I can't count.
Hang on. Part of the problem is that the symptoms are so traumatic and they are new to you.
It will get better.
Some herbs that may help with brain inflammation and depression are Japanese knotweed, eleuthero and fish oil.
You might check out the websites below.
Posted by valeriedc (Member # 24950) on :
Dale,
Like others, this is a note to say, "hang on friend' as you will improve, although no one can say when. If you have a new baby you are sleep deprived which simultaneously worsens your symptoms as sleep is critical to healing and puts you in an emotional state. Please, ride the wave of treatment knowing it will pass and take time to enjoy your new baby!
Posted by Silverwolf (Member # 9196) on :
<<<<<< DaleS >>>>>>,
It's good to see you posting,Please don't feel embarrassed or ashamed. As has been said,it is the disease.
They are right,it can attack our brains, and muddle tho't patterns,and so on. It is confusing,and can be discouraging.
Very glad for you,that you have a LLMD, some here are trying to treat on their own w/o access to an LLMD/ND. And Lymenet is a huge help for us.
I know the discouragement,and utter weariness first hand, and yes it is a long process. But you have to hang on... TxCoord[hubby] and I are praying for you,and yours.
Love Silverwolfi
Posted by DaleS (Member # 44571) on :
Thanks everyone. Two years ago I never gave lyme a thought and never realized how much this crap sucks. I'm discouraged because all this should have been avoided and also I didn't know about lymenet or ilads for a long time. I tried to see other
drs but no one helped. I'm scared that I'm going to die from this. I just think that its too late, it certainly feels that way too me. This infection has been going for too long. By the time I put a dent into slowing this crap down it would be too
late. I know people do make it, I'm just not one of them. Everything that seems is rare when you google it I get. The llmd said i had heart block a long time ago and that is rare too. I am taking knowtweed, eleuthero, cats claw, androphais,
magnesium, probiotic, activated charcoal, and gold alkaseletzer. I get mad fun of for taking the knotweed. We just started a car trip and I didnt bring the knotweed with me but I did
bring the other supplements. I am tired all the time because of this head/neck crap. And when i'm tired my other symptoms are worse. I feel so trapped sitting in the car for so long. Does anyone else have this?
Who knows about my wife and I, I somehow get the feeling that we might be done. rarely text or talk. I sent her under my skin before but I don't think she watched it
I'm just worried lyme is too trecherous now and I won't respond to treatment.
Do you guys switch llmds much or not? I'm not sure what to do. I have an apt with the llmd on dec11th and i want to know the igenex test results. But the llmd i have wanted to see I have an apt on the dec 9th. Not sure what I should do. I know
the llmd on dec 9th does iv abx and I think I need that for neuropathy and brain issues. Or can oral abx take care of those issues at high doses?
Posted by rowingmom (Member # 41213) on :
Dale, my daughter and I are using a combination of Buhner's bartonella and babesia protocols and with low doses (1/4 of his recommended dosages) have healed to 99%. Buhner does say that some people require long-term treatment so we will not be weaning any time soon. It looks like your LLMD is treating you with a good herbal lyme protocol to start. That is wonderful!
My husband was also not on my side when our daughter got sick. He did not believe in lyme and thought I was crazy for wanting to take her out of the country and pay out-of-pocket for her treatment.
We verbally fought daily and several times it got physical. I had made reservations for the local women's shelter.
The best thing I did was to make an appointment for us to see a marriage councillor. At this point neither of us was speaking, but we weren't ready to end the marriage because of the children.
The councillor made my husband realize that it was not his job to change my behaviour. That if he didn't like it he could leave. And I told him that - if he didn't want me as a wife, he was free to pack and go. But that I wouldn't be giving up on treating our daughter.
He said he wanted to stay, but seriously we didn't speak about anything significant for the next 2 years. He didn't want to hear about treatment, he didn't want to hear about appointments. So I just kept all that information to myself.
When our daughter started to improve, he then became more sympathetic. But he needed to see obvious improvement before he changed his attitude toward her infections.
He now realizes that lyme and coinfections are real and that they can cause overt physical/psychological disease.
It is hard going it on your own, but if we made it through so can you. Our marriage is not what it was, and will probably not ever be the same. But we are working together to raise our children and put them through university, college etc.
We don't argue anymore because I realize it's not my job to change my husband's mind about anything. I simply do what I feel is required to heal myself and our daughter. The better we get the more harmonious our family is.
Things change; not always for the worse, just different.
Posted by randibear (Member # 11290) on :
dale, we all could probably tell you stories that would tear your heart out or make you want to smack somebody.
some have very loving and caring fanilies, others do not. some are flat broke struggling, others are more fortunate.
we all here do what we can to support each other. whether its tears and hugs , some mail, or maybe some gifts or cash when some can afford it.
never be afraid or ashamed to ask for help. I have and others have too.
I've been on other boards but left because of lack of understanding and compassion.
You won't find a better group of people than here at lymenet. you truly won't.
now that I've tooted our horn. I'm off to the store and hoping I can remember what for.
Posted by Robin123 (Member # 9197) on :
You say, "should have been avoided" - ha, most everyone has no idea what's coming down the pike - life happens in ways we want, and also in ways we don't want - and we have to deal with both. The former is fun, the latter makes us learn more survival skills.
I think it's best if we get rid of the "shoulds" - it's a judgment that we beat life up with - best to move on to finding out what's going to help you now.
I don't think it's too late - I've seen too many people, for instance, come to a support group really, really sick, and turn around with good treatment. And that includes all symptoms, including heart symptoms.
What you'll need is a really good doctor. Sounds like you have two in mind. You'll need to sound them out as to what they think and what treatments they advise.
Agree with rowingmom - you focus on you, and everyone may come around later as you start to improve.
Thx for the plug for Lymenet, Randibear - I agree - this is an excellent community for support and info.
Posted by Rumigirl (Member # 15091) on :
Dale, you've been given lots of good advice here.
One thing that I will offer is that you said that you thought that you would need IV treatment for the neuropathy, etc. Everyone is different in what works for them and what they can handle.
But in my case, and probably more often than not, IV antibiotics help neurological cases the most (other intense cases, as well). In my case, I just knew it was the case (after trying natural
treatments for 3 1/2 years, where I only herxed and got way worse). IV abx was the first thing to really help---along with oral meds.
Also, it sounds like you need help with the pain and symptoms, so you can tolerate the symptoms and herxing. That is, both natural treatments and meds for pain, depression, etc. It's a SERIOUS need when your pain and depression are that bad, as yours is. Ask your LLMD for help with that.
Also, detox is essential. Coffee enemas are a life saver IMO!! There are lots of other detoxes, too. IV pushes of glutathione would help you a lot, I'm sure. If you get a central line for IV treatment, you can do them yourself at home.
Onward and upward!
Posted by Judie (Member # 38323) on :
"Every night I wake up because my upper spine pain, headaches, head pressure, ear ringing, nausea are so bad and each day it is worse than the previous. It's "
This and the pain reminds of two things.
1) A coinfection like babesia
2) Fluoroquinolone poisoning. These are adverse drug reactions from cipro, levaquin and avelox.
You get progressively worse after STOPPING the drug and it causes terrible depression/anxiety. This can go on for YEARS and mimic Lyme which confuse everything.
The Lyme doctors seem to be CLUELESS about the 2 black box warnings and at least 3 FDA warnings.
Quinolones interrupt your body's ability to heal by altering your DNA. It only takes 1 pill to set off a reaction.
With what's going on with you, I'd be VERY cautious to take any of these in the future. They are given routinely for suspected UTIs and sinus infections. Also given for Bart), but Bart then develops resistance.
Ask what they are putting in your IV.
2013 FDA Warning about Fluoroquinolone antibiotics causing PERMANENT damage
Dale, if your symptoms are worsening as the days are becoming shorter it could be a sign that you need the sunshine vitamin, vitamin D.
In reality, the way it works in the body is more as a hormone, so its name is a bit misleading. It regulates the development of immune system cells of all types, antibody producing cells, natural killer cells, signaling cells, etc.
When it is low, and it is often low for unknown reasons in Lyme sufferers, you are unable to absorb calcium from the foods you eat, and calcium stores will be mobilized from the bones,
as they soften, they become distortable by the simple effect of weight distribution, and the pain fibers in the outer covering of the bode will fire like crazy, resulting in a deep feeling pain.
It is not the only thing, but it is a very important one. Get a high quality vitamin D 3 that is in liquid form and preferably extracted from fish liver oil. Start at a low dose and titrate up.
There is tremendous controversy over what is appropriate for dosing, and what appropriate blood levels are. Ideally, you should have your blood level tested prior to supplementing.
Don't stop the magnesium, but make sure it is citrate and not oxide, the latter is poorly absorbed.
..............................................
Breaking up the post for easier reading for many here -
[ 11-24-2014, 01:43 PM: Message edited by: Robin123 ]
Posted by LisaK (Member # 41384) on :
DALE, you said: "like this disease is way too strong. I take my supplements and sometimes herx 10 to 15 minutes after. But then they symptoms are just worse the next day. Its like it helped but didn't if that makes any sense."
a herx can last days.
I felt jsut like you. I was ready to die. I ran out of money. I lost all hope.
all I could do was pray.
I met someone that was sent to me as a miricle I think of at the very least a helpful messenger.
thru them I found a dr that could help me at this time in my life with the financial aspect of the tx way better.
now, a year later, I am a totally different person.
a year seems long, but it went so fast now that I look back. tough tough times , tough sx and herxing was unbearable at times and I did want to end my life for sure
but I hung in and know now that it was all worth it. there is a reason for your life. if you end it yourself the purpose will never be realized and you help no one. especially not yourself.
tell yourself you WILL get better and it will happen in one way or another- either physically or spiritually, or what ever way YOU personally need to get better.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Judie:
2) Fluoroquinolone poisoning. These are adverse drug reactions from cipro, levaquin and avelox.
You get progressively worse after STOPPING the drug and it causes terrible depression/anxiety. This can go on for YEARS and mimic Lyme which confuse everything.
The Lyme doctors seem to be CLUELESS about the 2 black box warnings and at least 3 FDA warnings.
Quinolones interrupt your body's ability to heal by altering your DNA. It only takes 1 pill to set off a reaction.
With what's going on with you, I'd be VERY cautious to take any of these in the future. They are given routinely for suspected UTIs and sinus infections. Also given for Bart), but Bart then develops resistance.
Ask what they are putting in your IV.
2013 FDA Warning about Fluoroquinolone antibiotics causing PERMANENT damage
Very possible... and as for Vit D .. if you take that be sure to take LOTS of magnesium because Vit D will lower your magnesium levels.
Magnesium deficiency will cause many of the symptoms you are describing.
Posted by sonee123 (Member # 18632) on :
hang in there! Thats all i can say...keep faith in God and yourself.
Posted by dali (Member # 24458) on :
Dear Dale,
Your story hits home. I just had a meltdown myself this morning. I just didn't feel like dealing with it anymore. And like many on this forum, relationships with family and partners can get very difficult.
The effects of the bug on the brain are unknown. Also, I do believe that killing good bacteria while we are on antibiotics does influence and affect serotonin production (most is produced in the gut).
So with all of this plus herxheimer reactions, treatment can be worse than the original presentation of the disease. I have found this out for myself.
But, I think of my daughter-and that makes me get up and take the one step at a time that I need to take in order to get through sometimes difficult days. I won't give up.
And I have started having good days again. As will you-but it takes a strong will and a lot of faith to get there Blessings.
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Breaking up the post for easier reading for many here -
[ 11-24-2014, 01:48 PM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
Wanted to add a couple comments to what Docluddite mentioned. It's easy to get a bloodtest level for Vit D. It's nice to get it done before doing the liquid D drops, just to see where you're starting from.
Re magnesium, there are a couple kinds. I have responded without side effects to mg glycinate. We all find out which versions we do best with.
Hang in there - folks will help you here -
Posted by DaleS (Member # 44571) on :
Thanks for the support everyone. I will fight this the best I can, but my symptoms are getting worse fast. I even think back a few
months and I felt so much better. I wish I had made an llmd appointment earlier I somehow got the infor on the dr I'm going to see
on the dec 9th, but I went with someone else that I could see quicker, should have made two apts and would have been seen in May
probably.
I dont think I have Fluoroquinolone poisoning, haven't used any of those drugs. I will try the d3.
Today was dreadful. We drove 12 hours today and today was nothing short of one big massive flareup. I felt so trapped in the car. I
usually walk around during a flareup or get some fresh air. Any ideas on how to deal with one in the car better?
Also wondering survival chances of Tick-borne encephalitis is in late stage lyme? I also seem tired all the time today as well. I
wonder if thats because of the flareups today
Also seemed to get a bladder infection today. Drank a lot of cranberry juice and bought some cranberry pills. Seemed to help, but
quite better.
I just see my life flashing before my eyes and its sad.
I'm spent, have a goodnight all.
Posted by Robin123 (Member # 9197) on :
Here's another idea for you - to experiment with natural anti-inflams. Like turmeric powder is an easy one - you can get it in capsules or as bulk powder that you dip an empty capsule into. I am feeling better on it.
Another is drinking mangosteen juice. I like the Mango-Xan variety. There's also noni juice, grapeseed extract capsules, boswellia and papain - any of these have the potential to lower the inflammation you're dealing with and help you feel better.
All the above can be found in healthfood stores.
Just curious - why are you traveling 12 hours in a car?
Posted by DaleS (Member # 44571) on :
Thanks.. I was drinking. organic raw apple cider/crushed garlic/natural hone/tumeric a while ago but wasnt doing anything for me. maybe i didnt try it long enough. vacation . gotta go. feel like
going to hurl and have bad fever
Posted by surprise (Member # 34987) on :
Everyone here has reached out with fundamental outpouring, and if this in itself doesn't give you faith in the human race,
not sure what will. Except taking your newborn baby, and rocking the gift to sleep on your shoulder in a quiet room. Bond with your child, that will get you to hold on when nothing else will.
Also, a low dose antidepressant might be exactly what the Dr. orders as you get more lyme/health treatment under your belt. I think one of them helps with body pains- Lyrica.
So my advice is rock, feed, love that baby who needs you, and you will find you need it. And the Lyrica/ antidepressant. Then work the lyme.
Posted by Brussels (Member # 13480) on :
The car problem... Yes, I had many problems in the car. It is dangerous to drive, if you are neuro-lyme like many here.
It consumed too much of my energy, to drive. I needed to use my reflexes, and it was too much energy consuming, and brain inflammation didn't help either.
I had a car accident during lyme, because I just looked and didn't see any car coming. The car was not in front of me. And I crashed on it.
A neuro-lyme guy is pure danger in the car! If the normal people knew what we are, they would be damn scared of us, neuro-lyme drivers.
I got lost many times, driving, in streets I knew by heart for ages. Very simple ways. The car made me so confused, exhausted.
So many times I kept turning round a round-about, just because I didn't know where I was going.
Either I forgot my way, or I simply forgot the reason I took the car.
When I finally remembered, I had anyway to go back home, because I had forgotten something else (like if I wanted to go shopping, I had forgotten my wallet home....). The worse is when I forget how to get home. Then I pulled the car off the road, and waited.
One year before that, I was defending a doctorate thesis on two languages that were not my own, without problems.
During lyme, I could barely buy a loaf of bread at the baker's, as I didn't know anymore how much money I should give or get as change...
Taking binders after killers made my energy back, treatment made my brain inflammation get better, and things got better.
Hang on Dale! Read about natural treatments, try stuff on your own if you don't trust your doctors or you can't find help fast. The only thing that can kill you, is if you just give up trying treatment.
Posted by still winning (Member # 44439) on :
DaleS,
Hang in there. We all understand. We’re all with you. I’m starting over once again because of lyme.
I’ll make this short. Have you been on Rocephin? (I think shots work as well as IV). Here’s a good oral protocol: Omniceff, plus the Natural Andrographis.
But my experience is that for some reason, sometimes some of my meds don’t work for me. Example: Ketek. I was on that for a long time. Great for the brain. Then couldn’t get Ketek. Then found an independent pharmacist who ordered it for me. But it looked different and had a bad effect. So I stopped taking Ketek. Perhaps some of our meds, even natural ones, get influenced by outside sources. So you have to make sure the source is good.
Are you well enough to exercise at all? Even when you are feeling horrible, if you can do some type of resistance workout, pushups for example, this might make you feel emotionally better. (If you do any exercises, do some stretches first to warm up. Though might want to check with Dr. about heart block).
About exhaustion. Someone mentioned low Vit D. My Dr. said I was low and ordered me to take 2000 units of D3 everyday. It has helped my exhaustion.
We’re all on your side.
Still Winning
Posted by hope4best2012 (Member # 38473) on :
Dale, please hang in there. It's been a long struggle for me, and throughout this time, I've thought of ending my life too. I could not get the thought out of my head, and I was barely living.
I literally thought about killing myself every single day. But, as horrible and different my life had become since all this happened to me, I just kept on hoping and praying that some greater power up there would hear my pleas for help.
My life is nowhere near what it once was before the tick bites, but it's still a life. I can see my nieces grow up and start talking, and I can take joy in the very simple things in life. Humor is something that gets me through the really tough days.
My prayers to the powers that be, whoever they are up there, are with you. I hope you will keep on fighting and remember that you are not alone. All of us are here together fighting. Feel free to pm me if you need to, I'm here. Please stay strong, please keep fighting for each new day.
![[group hug]](graemlins/grouphug.gif)