posted
This roller coaster ride of the past two years has been so difficult for me. The last upswing was so high up I could almost taste 100% healthy. I shouldn't be ungrateful, I know some people on here might never even be able to hope for that.
This downswing is brutal. I'm seeing autistic-like behavior from my son. My daughter has difficulty being nice, she is just plain mean sometimes. I'm having minor tingling on my scalp that an EEG indicates is seizure like activity. My husband has an unidentified mass in his brain.
This is all like a bad dream and I want to wake up.
I know that the ABX for the past two years aren't doing any good. If they were doing good then we'd be better by now. Right? I am clueless as to how to do anything herbal.
We have no family in the area. Are lucky to be healthy enough to hold down our jobs. But daily life has become so stressful that I'm out of breath and just about in tears from a simple morning routine to get everyone out of the house.
Simply put. I'm a mess and I have no idea how to get out of this one.
I don't want this to be my life anymore. I hate it and I can't believe this is the reality of so many. Why are we all suffering so and why can't ANYONE make it STOP?!?!?
Just make. it. stop.
Posts: 274 | From United States | Registered: Feb 2012
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
So sorry you are suffering. And watching kids struggle is awful. We can all relate to the "Where is the quality of life?" aspect.
If you had an upswing to nearly 100% it would seem the abx are working. Up and down is a typical pattern during treatment. And a relapse after a good phase is miserable, physically and emotionally. We really get our hopes up when we are feeling better.
Don't stop just because you are in a relapse! Look to what worked before, or what infection may be surfacing.
Give yourself whatever mental break you can, but keep moving forward. People do get well. Or get to a place of manageable symptoms.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
the autistic like behavior you see from your son may be a blessing...i am pming you a phone number
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
YinYang,
Jump on the PARASITE WARRIORS THREAD! The co-infection of parasites/worms is now being recongnized as the number one co-infection of Lyme by ILADS.
Google parasite symptoms at Humaworm. This is probably the missing link for you and your children.
They are finding worms in Austic children. Sorry you are suffering but there is hope.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Thanks for the support everyone. Boxermom, thanks for the perspective. The dives are pretty psychologically debilitating when you think you see a light at the end of the tunnel only to find out it is an oncoming train.
Posts: 274 | From United States | Registered: Feb 2012
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I am saying a prayer for you to know what to do next . I identify with the profound discouragement .
I did 3 years of ABX , and got rid of pain, but felt no better at all . I know several others who did them extensively and had same result - no improvement just endlesss herxing .
Just a thought : there are herbs are reputed to work on parasites and lyme and coinfections .
Do some research on :artemesia annua , grapefruit seed extract ,teasel, sida acuta, cryptolepsis , allicin .
I would also look into a GB 4000 rife for my family if possible . You might ask for users here to give you feedback on their rife experience .
I really DO believe parasites are a real part of our problem BUT , IMO, I think the picture of "lyme " in its entirety is barely known now . Everything is more or less experimental once the condition gets chronic after 2 years - at least I have read this a lot and believe it .
God help you soon! Sending a prayer for direction and encouragement .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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I'm back to thank you for your words of support. It really inspired me to find another way. I wanted to be sure to cme back and tell you that.
Shortly after my post in February we stopped ABX and switched to a completely herbal protocol. Using herbs that do more holistic work than the antibiotics
(nutritive, antiparasitic, antispirochetal, detoxifying, etc). I learned everything I could about herbs and natural treatments for lyme.
We started feeling better, then I worried that it was just because we weren't herxing.
Three months later, I can honestly say that we are doing amazing on the herbal protocol and I see the path to wellness for my entire family.
We are living an entirely different reality than we were just a few short months ago and I couldn't be happier.
[ 05-23-2013, 03:13 PM: Message edited by: Robin123 ]
Posts: 274 | From United States | Registered: Feb 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
YinYang, that is wonderful news! Thanks for sharing because it is inspiration that so many of us need. Happy for you and your family! Posts: 2387 | From New England | Registered: Aug 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by YinYang: Annxyzz,
I'm back to thank you for your words of support. It really inspired me to find another way. I wanted to be sure to cme back and tell you that. Shortly after my post in February we stopped ABX and switched to a completely herbal protocol. Using herbs that do more holistic work than the antibiotics (nutritive, antiparasitic, antispirochetal, detoxifying, etc). I learned everything I could about herbs and natural treatments for lyme. We started feeling better, then I worried that it was just because we weren't herxing. Three months later, I can honestly say that we are doing amazing on the herbal protocol and I see the path to wellness for my entire family. We are living an entirely different reality than we were just a few short months ago and I couldn't be happier.
So what is the herbal protocol (without creating too much work for you to list everything)?
Posts: 3792 | From around | Registered: Mar 2008
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
God bless. I keep remembering what I was told the only way out is through.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
YinYang, thanks for returning here to let us know and that there is hope - I think yours is an important post - I ditto Rumigirl's question about what you all used for your treatments and what effects you perceived that these treatments had on your previous symptoms.
Posts: 13171 | From San Francisco | Registered: May 2006
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I didn't follow a specific protocol, but I started with Buhner's core herbs and as I learned more about other herbs I took it from there. As with all herbal protocols, herbs are specific to the person and their lifestyle. I'll list what I did, but it is worth switching out herbs that you don't feel are working for you.
It should be mentioned that I had a good diet before, but I've also done the final touches on cleaning it up further which has great impact. All organic, minimal sugar (a weakness), minimal gluten (another weakness), lots and lots of plant based food. I was a vegetarian but just started eating a bit of meat and I feel like it has helped my energy levels. I've also tried to manage stress levels better and get appropriate sleep, which is a contributing factor to chronic disease of any type.
Core Lyme herbs: Japanese knotweed, cat's claw. I take half a dropper 2-3x a day. (Any brand will do) Co-infection: Buhner's recommended CSA tincture from Woodland Essence.
Support: Eleuthero, Solomon's seal (this is particularly useful for when I start to feel my stress coming on, just 2-3 drops of Solomon's Seal on my tongue and I'm feeling much more emotionally flexible.)
Nutrition/Detoxifying: Overnight tea. Make it before bed and steep it overnight. My blend includes: Nettles, Cleavers, Calendula, Dandelion Leaf, Red Clover. You can add peppermint or licorice root for taste and all of their great herby benefits.
This is essentially a snapshot of what I do. It's a good starting point for someone, ultimately you'll likely tweak it until it works for you.
I am amazed and humbled by the powerful healing benefits of plants. I feel like my eyes have been opened. I can't imagine ever being on antibiotics again.
Posts: 274 | From United States | Registered: Feb 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Wow, great post! I am so happy to hear about you and yours improving on herbs after ditching abx! Thank you for sharing!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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