posted
I've been battling lyme and coinfections for three years.
I am back on rifampin and once again this drug has thrown me into the pits of hell-I'm either so down and out that I'm suicidal or I'm ready to chop off someone's head (mostly the first though)
I've gone through this so many times now and know rifampin is the only thing to kick bart (had it for 25 years)
I've tried staring and stopping and sometimes that does the trick but right now, I'm ready to swallow a bottle of pills. I can't see right now and need someone to pull me through this
Posts: 298 | From usa | Registered: Aug 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I've been there with Bart - it's not fun.
Try putting on some music and maybe drink a calming tea. (chamomile)
L-Theanine helps calm the brain too.
Activated Charcoal knocks OUT a Bart herx for me. Take 1-2grams
Have you ever thought of rife therapy? If you've been after this for a long time and are still at square 1 with Bart you may need to experiment with alternative therapies (salt/c, CS, rife, MMS)
Hang in there Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
I know where you are. I have been there SO many times...just a week ago, actually. The rage, the suicidal thoughts...thinking if I had to live one more effing day with this disease...
But it passes. It does.
I liken this to cancer treatment. If the cancer doesn't kill you, the chemo/treatment will. BUT, we have to be stronger than that. Look how many members are on this forum. You are NOT alone. There are SO many of us fighting this fight.
Do you have family or someone that ives with you? People you can count on and/or call? For me the ONLY thing that gets me through this time is my kids. I don't want them to grow up without a mom or with the memory of a mom who killed herself. How about a pet, do you have one? Sometimes focusing on someone/something outside yourself can get you through the worst of it.
Is it possible to do a smaller dose of the rifampin so you don't have to feel so bad? You are not alone, lyme987...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Suicide hotline may be a good start seriously. I don't know the number. Can someone here post ASAP. Please talk to someone to help. I wish you the best. I know treatment is brutal.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I second the L-Theanine... it's very good for depression and mood disturbances..
I don't know if you are willing to try any herbal formulas but they can seriously pack a punch and you might just feel better taking them.
For Bart, Samento and Cumanda work really well! You can order them today and have them before the week is up. I have an address where you can get them fairly cheap. If you can handle it add in Banderol and you will see a difference. Burbur will help with those herxes.
Another really great product is Bar-1, I also have an address for that. Usually, it can only be bought through a practitioner.
PM me if you want those addresses..
Hang in there, maybe if you back off again you can supplement with something natural.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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fflutterby
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Member # 28081
posted
Prayer from me too ...
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Stick it out, you're stronger than that infection. Imagine if you ended your life now and had you lived, only to find out that within a few weeks, or even months you would have felt much better and had the infection under control.
Don't stop digging for gold out of frustration, you might be only three feet away and then what? It was all just wasted time.
Never quit, never be the cause of your own demise when you've invested everything you have and are into finishing this. If the illness takes you, that's one thing, but hang onto your head as long as you can.
Beat it down. Show no mercy to those organisms. It's your body, not theirs. Take it back!
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I've done all the herbal protocols-they don't work for me-I have also used a KPU machine-Dr. k's machine for 4 months-did nothing
No, my body only seems to react to pharmacueticals-I tried a md natropath, accupunture, scar therapy, many natural approaches, even he was at a loss-put me back on mepron for babs
I do have children who I love with all my heart and a wonderful husband but I wonder what good I am to anybody in this state
Posts: 298 | From usa | Registered: Aug 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'll tell you that I've been where you are and that inspite of the agony you feel in your heart right now -- the darkness isn't all consuming. The shadow proves the sunshine, it's there waiting for you, so take it just one minute at a time.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I was on the edge a few months ago, same thing, just wishing for death. Treating Bart has brought me pretty far. I 've been feeling very well for 2months now. every day getting better. Hang in there, you will beat it! Don't leave us!
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by lyme987: thank you all for the kind words,
I've done all the herbal protocols-they don't work for me-I have also used a KPU machine-Dr. k's machine for 4 months-did nothing
No, my body only seems to react to pharmacueticals-I tried a md natropath, accupunture, scar therapy, many natural approaches, even he was at a loss-put me back on mepron for babs
I do have children who I love with all my heart and a wonderful husband but I wonder what good I am to anybody in this state
Being alive alone is enough. You don't have to do more than that. In a child's mind, that is everything.
It sounds to me like you need aggressive IV therapy, combined with oral therapies to kill the Bartonella, Babesia and Lyme.
Get your hands on some IV Vancomycin and Bactrim, Levaquin, Ivermectin/Artemesia/Malarone or Mepron. Go for the huge guns if you feel the risk to benefit favors that over dying (self inflicted or not).
Ask your doctor what his "big guns" are -- and make sure to treat the symptoms (including depression) with medications if necessary.
If you end up coming really close to the edge and think you might lose it, stop treatment. Reaching out here is good but you can only take so much before you break. Everyone can break.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Have you tried Homeopathic medicine? It may not make the physical symptoms better, but I have found it work wonders for my mood and attitude. There is an excellent homeopathic physician (MD and homeopath) in the northern part of Philadelphia who saved my life when I was a teenager. I really do believe that if my family had not moved out West, I would have stayed under this doctor's care and probably would be healthy and doing great today. PM me if you want her contact info.
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Have you tried cryptolepis tincture from Woodland Essence? Hubby started with maybe 1/2 dropper 3 times per day and worked up to 15 droppers (1/2 ounce) 3 times per day over a couple of months. That stopped the Parkinsonian tremor he had had for 9 years at that time. Also the daily night time seizure-like episodes.
Unfortunately the herb was in short supply for several months and he lost his improvements within a couple of weeks of stopping the herb. It took us over a year on various combos and doses of levaquin, rifampin and factive to get back to the same place. But this time the progress has stuck for over 8 months.
His WBC and RBC have stayed in the normal range and his most recent bloodslide was clear.
He started at 50 mg of rifampin and took 8 months to get to the 600 mg dose. But he treated with the levaquin first -- started at 250 for a couple of months before increasing to 500 mg. If you can get the load down first with either herbs or levaquin then the rifampin is much easier to tolerate in my opinion.
Hang in there.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I've done everything and beyond. 1 and1/2 years of IV-ended up with tygacil-this is the big gun- not to mention about 12 other iv drugs-intramuscular shots 5 months, all types of alternatives
I think I've just had this too long-
Posts: 298 | From usa | Registered: Aug 2009
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Believe me, I understand all too well. I've been going through the same thing myself. The link given above for that website is great! And it's good to have the hotline number, too.
Please reach out to people. Get a therapist, if you possibly can (through insurance??). Is there a local support group you could go to, or to call people from?
And, yes, please get help from your dr or from a psychopharmacologist for meds for depression/anxiety. This is nothing to fool around with.
I'm not negating the validity of your feelings in any way. Please reach out, while you try to find the right treatments. Tick-Borne Illnesses are enough to break a saint! However, I think there are many saints on this board!
Posts: 3771 | From around | Registered: Mar 2008
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chiquita incognita
Unregistered
posted
Maybe your doc can cut down the medication dosage to cut the intensity of the experience for you? You could ask.
And maybe you could ask about what your doc thinks of your stopping for a while to "cool out" and then start an antidepressant prior to going back on abx? So you can deal with it better later on? Just a thought.
If you do that, then L-theanine and other amino acids should not be mixed with mainstream anti-depressants. The combination can raise too much serotonin. It should either be one or the other, unless under a doctor's guidance who knows how to adjust the dosages.
I see that you tried a number of alternatives. But remember, there are many things out there and what works for one person, may not work for the other. Keep on searching until you find what does work. Here is something that worked for me:
I second Lulumom. I can't make recommendations for you, as that is for your doctor to do. But I do want to share my own experience with you.
Doing the Bar 1 product by Healthy Directions that Lulu mentioned has helped me a lot in only six months. And herx's were short-lived, only twice were they uncomfortable, for the rest if they happened they were residual and in fact, most of the time I had no herx's at all.
Yet I had very real progress, and have not relapsed in those areas of progress either.
My LLMD said that resveratrol is good for bartonella.
Since starting bactrim I Have been miserable and ill, not sick, for six weeks. Still recovering.
Yet no relapse in the areas the Bar 1 helped me with.
I hate these abx and have decided at least for myself, that the herbs are gentler and *more!* effective (for me they have been) and that I am going to do them first, then abx later to peel the last layer. NOt to peel teh whole onion in one big bam with abx! That's been my decision.
FYI I too have been infected, for more than 30 years in my case. We never had the right dx.
Still all this good progress with so much less drama.
I hope this brings you some hope.
Meanwhile I also second the activated charcoal idea. It really can help to take off the edge.
Epsom salt baths, strong ones, have been very helpful to me too.Long, nice soaks with essential oils like lavender or geranium oil have been very helpful to me.
Coconut oil topically has helped ease out nerve agitation a lot. The medium chain triglycerides in the oil are used for epileptic seizure control, said MIchael Murray, ND in a lecture of his which I attended (had nothing to do with lyme). It really helped me a lot to rub the oil all over my body during times of high stress or lyme-induced agitation, nerve shocks, emotions, etc.
The above is for adjunct support and not intended to be a replacement for your doctor's care.
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease.
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chiquita incognita
Unregistered
posted
Please remember too, dear friend, that things pass. We make the assumption that hell is forever. That's part of the lie of it. Evil lies.
We think all is a downhill spiral. That is a false assumption.
YOu are on an upward spiral. You have got lots of support here, and you will get better.
Please reach out to friends and don't be alone with this.
Please join a lyme support group and have people to talk with, locally, at any time. Post here and we will support you too.
So long as the doc said it won't interact, I myself also might be inclined to start a milk thistle supplement to build up liver cells and aid detox later on in lyme die-off therapy. With a stronger liver, detox symptoms should be better, hopefully. And your body should be able to better tolerate the process. I really like teh Paradise Herb product http://www.iherb.com/Paradise-Herbs-Milk-Thistle-60-Veggie-Caps/4238?at=0
Perhaps this can help you right now with the detox that (I am making an assumption, but am not a doctor so this is a hunch, not a diagnosis) could be contributing to your emotional state. If the liver is toxic, according to Traditional Chinese Medicine, emotions in general are elevated, particularly anger but also depression and sadness. If the two emotions or others alternate, bupleurum is an herb that is used to calm down the liver.
Be easy on yourself, and remember that this too shall pass. There is nothing permanent under the sun. Everything changes and everything passes.
A really good cognitive therapy book which has been enormously helpful to me:
The Feeling Good Handbook by David Burns, MD wonderful!
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease.
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posted
I have another twist on this, but you have to know it's a twist and NOT reality -
if I imagine myself dead when I'm suffering through something, I find it a relief, because if you're dead, you can't feel, right? So it's a form of hypnosis and actually provides some relief -
only to be done for limited periods of time, after which, do something else to ease it if possible.
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
"I do have children who I love with all my heart and a wonderful husband but I wonder what good I am to anybody in this state "
Let me tell you something...one mom to another. If you ended your life, your children have to live with that pain for the rest of theirs. I have asked myself what good am I as a mom/wife when I can barely get off the couch? I can still love them, hug them, hold them, listen to them...all of that counts. All of that is important to THEM. For me, I remind myself that I NEVER want to do anything that would hurt my children. Living with this disease is bad enough, but to leave them? I often feel guilty for 'what should be' as far as their childhood goes. But though I cannot do as much as I wish I could, I can love them with all my heart and they KNOW I love them.
Same with my husband. Did he sign up for this? Yes and no. He did agree for better or worse/ in sickness and health...neither one of us pictured this when we got married and started a family. But this is what it is and we are in it for the long haul.
I am back on abx now as well. It sucks, and I feel like crap. But I HAVE to hold on to hope that things will get better. We can't give up! I have had this for at least 19 years, but 'full blown' for the last 5. I am getting worse, not better. BUT I still hope that I will find the magic combo that will give me relief. You will too. Please hang in there, you are not alone...we are all here...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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chiquita incognita
Unregistered
posted
Hello again Friend
I think taking care of the body is really key during tough times. We think so much is in our head, but a lot of it can be physical. In fact, in my experience, it *usually* is physical. Especially if you are "going through it" after taking the antibiotic, that would make sense, right?
I think to ease the burden on your body during die off, detox is really important. The lack of support (physically) during that time can push *all* of us over the edge.
Lots of charcoal, epsom salt baths, chlorella can help too (my doc said to take it a few hours apart from medication so it doesn't interfere with drug absorption). To empower you with hope, Linda Rector Page, ND writes that chlorella has been used by the US Army to mitigate the effects of chemical warfare, in her book "Healthy Healing".
That same book, Healthy Healing by Linda Rector Page, ND has lots of information about detox, juicing et al. The more I think about it, the more I think that juicing is an important adjunct in any detox therapy.
Milk thistle constituents (that's different than the whole herb), fed to laboratory rats prior to feeding them the poison aminita mushroom which ordinarily causes liver hemorrhage and death, grants the rats 100% protection! They show zero symptoms, writes Elizabeth Williamson, ethnopharmacist, in her book Potters Herbal Cyclopedia. The constituents in the herb give that much protection! Incredible. The herb has also been shown to aid new liver cell growth. I am just writing this to offer you tips for empowerment and encouragement.
A good quality product is important, herbs can be lifeless if not cultivated and processed under the right conditions. Then people conclude that "herbs just don't work". The truth is they needed the right product, one that had life in it. Again my favorite is the Paradise Herbs product. Really good quality and highly concentrated too. Again I write this just to empower you. You can read a study here about its protection of the nervous system from toxic assault (helpful to us Lymies) on this pubmed study: http://www.ncbi.nlm.nih.gov/pubmed/20868716
Please don't be alone. Please surround yourself with love, hugs and friends. Lots of beautiful music, candlelight, stargazing, beautiful photos in books, a funny movie.....please take care of yourself and please make us a promise.
You won't allow yourself to be alone. Not even for one minute.
YOu take care of yourself. We are thinking of you, visualizing you being well and applauding your progress!
Be encouraged, not discouraged. If you are "feeling it", the antibiotic is working! You are going to be okay.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by lyme987: I've done everything and beyond. 1 and1/2 years of IV-ended up with tygacil-this is the big gun- not to mention about 12 other iv drugs-intramuscular shots 5 months, all types of alternatives
I think I've just had this too long-
I feel ya. I've been there too. I felt better after awhile but then gradually slid back down. I managed to stop sliding when I did the Bionic therapy, which I've now followed up with Rife.
Could be coincidence, but I've never been off antibiotics in almost 10 years. Every time I'd stop I'd slide back fast. I didn't slide this time but I also didn't go forward very much.
I've had it since I was a little kid. I'm now 33, so I really do relate. I'm still searching for a solution. I know I will find one though.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
quote: Could be coincidence, but I've never been off antibiotics in almost 10 years. Every time I'd stop I'd slide back fast. I didn't slide this time but I also didn't go forward very much.
That's why I think that to balance and tone up the immune system is key to our recovery, alongside any abx therapy.
To modulate the body's own defenses would seem to be key to any get-well program, true? ALongside, not instead of, tackling the task of killing off the bugs.
A good book about strengthening and modulating immunity:
"Boosting Immunity" edited by Len Saputo, MD
I hope I am not being pushy by bringing this up yet again, but honestly to our friend above...it sounds to me like the alternative therapies you tried, at least from what you described, may not have been the right ones.
I also want to tip you off that in herbal studies, they have found that a combination of herbs all working together to target the appropriate body system, is more effective than taking a single herb.
As above, if people use herbs of inferior quality they then conclude that herbs "just don't work".
This is just not true! I myself have recovered from environmental illness with its MS-like symptoms, endometriosis, and more...using herbs alone and nothing else. Diet, yes. Nothing else.I also have been really pleased with the progress I have made with Bar 1, and yet I had very few if any dramas along the way.
If abx are the way you want to go, then maybe the doctor can cut back the dosage so you don't go through it as intensely. And maybe a really good detox protocol will help lift a lot of your depression. Or even just some of it, easing up the burden.
There is hope my friend. And you are going to be okay.
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posted
I can relate to being at the end of your rope- I too have been extremely ill with many symptoms, the worst being chronic severe pain from nerve damage. I've tried to start rifing with a Doug Coil machine but have been too sick to deal with the toxins (from killing Lyme and babesia bacteria). I've tried every treatment from IV Rocephin to many orals and alternative approaches.
Last week I believe I've found the key, which is getting rid of toxin buildup in my lower intestine using "colonics". This is a European method of using filtered and purified water to soften the "crap" that's built up in your large intestine (which for me caused toxins to re-absorb into my body). In my first colonics visit I expelled over 7 lbs of crud, and today I'm going for my 2nd treatment. Five of these should help remove most of the toxins that have kept me horribly ill. I HIGHLY RECOMMEND TRYING COLONICS BEFORE TRYING ANYTHING ELSE. Without first doing this I believe many of us CAN'T GET WELL. It's not a fun process but is necessary- now I feel more hopeful seeing how much junk was removed. Good luck and email me if you want more info in this!! [email protected]
-------------------- m2 Posts: 13 | From Redmond, WA | Registered: Aug 2008
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posted
Sit in the tub and SWEAT. This is the only thing that helps me when I get to that point...
-------------------- Urge Congress on EMF Safety, FCC Must Change Exposure Guidelines for Microwave Radiation Exposure: http://tinyurl.com/2cjq54y Halt Universal Broadband, A Public Health Hazard: http://tinyurl.com/3x7xrmq Posts: 495 | From USA | Registered: Mar 2010
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
It's so hard to cope with the instability of this. I think that too but then realize when I'm ok it's the furthest from my mind. This puts you in states unthinkable. I hate saying one day at a time. I'm tired of it too, just started psych Meds. I'm not proud, but I have o function, whatever makes you get though this you do. With the grace of god,well look back on this and see that this was a horror not to be remembered.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
Praying for peace for you today. Listen to raw vegan, she's right. Your kids do need you, yes, even like this. This time will pass, it really will.
Posts: 246 | From south florida | Registered: Mar 2010
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posted
Lyme987...thinking about you today...your mailbox is full...please check in and let us know you are ok. We are here for you...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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chiquita incognita
Unregistered
posted
Hello Lyme 987 I also tried to pm you and wanted you to know that I am thinking of you. Feel free to pm me and we can talk. Sending best wishes and support, CI PS suicide is the ultimate guilt trip to those left behind. They may struggle for hte rest of their lives to recover from it. Don't do it. Take care of yourself and get better instead. Take care of your self....now (on an inner level, not just medically) to get through this. BReaks as needed, uplift, love and hugs....take care of yourself, CI
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