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A thread to discuss lyme disease*  This thread currently has 172,129 views. Print Print Thread
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Ribbit
Tuesday, January 10, 2012, 3:11pm Report to Moderator Report to Moderator

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1. Support collagen structures so that damage to the body systems ceases;
2. Enhance immune function so that the body can deal with the organism itself;
3. Shut down the inflammatory pathways the spirochetes initiate, especially in the CNS;
4. Treat symptoms;
5. And only then, try and kill the spirochete.




That's sort of what my ND has done.


I'm considering getting the whole collection of tinctures in the Cowden protocol and dealing with this myself.  


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

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Kim
Wednesday, January 11, 2012, 12:05am Report to Moderator Report to Moderator

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I am also now using acupuncture to boost the immune system.  Also helps with all the other Lyme symptoms.  
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TJ
Wednesday, January 11, 2012, 12:34am Report to Moderator Report to Moderator

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Ribbit, what is the Cowden protocol?
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ABJoe
Wednesday, January 11, 2012, 3:13am Report to Moderator Report to Moderator

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Quoted from TJ
Ribbit, what is the Cowden protocol?

TJ,

Here is a link to the Nutra-medix website that talks about it - Month 1 shown, other months are accessible in left menu bar...
http://www.nutramedix.com/store/pc/viewPrd.asp?idcategory=5&idproduct=15#details


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Kim
Thursday, January 12, 2012, 10:35am Report to Moderator Report to Moderator

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I just found out I have inflammation of the optic nerve in my left eye which is typical of lyme disease.  The lyme doctor said topical steroids were okay.  

In the next few days if my vision doesn't worsen, I am good, but if it does worsen the only way to stop permanent vision loss is oral steroids.

I consulted my lyme doctor and she said to take the steroids with my antibiotics and of course save my eye.  There is a chance I could lose the vision in my left eye.

This is very common in Lyme patients.  The steroids are not good for lyme disease at all but losing vision in an eye isn't either.  
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nowishow
Thursday, January 12, 2012, 6:36pm Report to Moderator Report to Moderator

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I'm so sorry Kim. That sound very scary. I'm wishing you the best.  


"Anxiety is the gap between now and then"

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nowishow
Thursday, January 12, 2012, 6:41pm Report to Moderator Report to Moderator

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Has anyone heard from spinnakertech lately? I just tried to send a PM but her box was full.


"Anxiety is the gap between now and then"

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TJ
Thursday, January 12, 2012, 7:17pm Report to Moderator Report to Moderator

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Quoted from Kim
I just found out I have inflammation of the optic nerve in my left eye which is typical of lyme disease.  The lyme doctor said topical steroids were okay.
I have trouble with my left eye, too, but it's nothing as serious as that, thankfully.
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JJR
Thursday, January 12, 2012, 8:28pm Report to Moderator Report to Moderator

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Oh my.  I'll be saying a prayer for you Kim.  


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"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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TJ
Friday, January 13, 2012, 5:49pm Report to Moderator Report to Moderator

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Article: Herxheimer Reaction Is A Good Thing. The Worse, The Better! REALLY???

Quoted Text
When a doctor uses an antibiotic to kill some Lyme spirochetes in a patient, there is often a resultant Jarisch-Herxheimer reaction (Herx) — a worsening of the patient’s symptoms in response to the increased release of bacterial die-off toxins. The toxins are deposited into the bloodstream and are circulated throughout the body until they can either be eliminated or become lodged in areas of weakened tissues. As neurotoxins, they are preferentially taken up by nerve tissue. These lodged toxins are one of the reasons that symptoms can persist even after the actual Bb infection is gone; the toxins can remain as an irritant in the tissues for years.

In truth, a severe Herxheimer reaction is a sign of poor elimination pathway drainage, poor organ support, and poor treatment by your doctor!
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JJR
Friday, January 13, 2012, 5:53pm Report to Moderator Report to Moderator

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Interesting.


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ABJoe
Friday, January 13, 2012, 6:07pm Report to Moderator Report to Moderator

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Quoted from TJ's post
In truth, a severe Herxheimer reaction is a sign of poor elimination pathway drainage, poor organ support, and poor treatment by your doctor!

This is why you need to heal the gut first or at least be doing things that will help it while you are doing any bacterial killing.  

You have to continue to keep the gut healthy as some of the waste can be very difficult to move out, but you want it to move out as quickly as possible.


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JJR
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I have to say something about this.  My doctor is really into eating probiotic foods.  Like kefir, cultured veggies, etc.  It's supposed to be really good for you and help populate your gut.  But I'm so sensitive to the amounts of these.  If I just eat just a hair too much of that stuff, I get the herxing so bad, it's just no fun.  My body just really gets tore up.  I get so inflammed.  And I tell them that.  And I personally, have just quit eating stuff like that for now.  I know it has actually done good in the past though.  Despite the herxing.  I KNOW that it helped heal my gut from where it was to now.  And believe me, it's a whole lot better now.  But man, those herxing sessions really mess me up.  At times I would just feel like every cell in my body was on fire and it was really crazy.  

Now, the problem therein lies the fact that I know all of that work helped.  But it was very painful in the process.  How does one actually "Shut down those inflammation pathways".  That seems like more of a challenge than the actually putting the words down on paper.  Does the book talk about different methods of doing this TJ?


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"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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ABJoe
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Quoted from JJR
But man, those herxing sessions really mess me up.  At times I would just feel like every cell in my body was on fire and it was really crazy.  

Now, the problem therein lies the fact that I know all of that work helped.  But it was very painful in the process.  How does one actually "Shut down those inflammation pathways".  That seems like more of a challenge than the actually putting the words down on paper.  Does the book talk about different methods of doing this TJ?

I know exactly what you are talking about, JJ...  I have a practitioner that works with homeopathic remedies that help me tremendously.  Thing is, once I get one thing under control, another pops up, so it is a continuously changing game.

The On-Fire feeling is when the body is ripping toxins away from nerves or nerve centers.  If anyone can tell me how to eliminate the pain, without pharma drugs, I'm happy to listen.  I'd rather have the pain than drug induced brain fog - at least I know pain is a real indicator.


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TJ
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Quoted from JJR
I have to say something about this.  My doctor is really into eating probiotic foods.  Like kefir, cultured veggies, etc.  It's supposed to be really good for you and help populate your gut.  But I'm so sensitive to the amounts of these.  If I just eat just a hair too much of that stuff, I get the herxing so bad, it's just no fun.  My body just really gets tore up.  I get so inflammed.  And I tell them that.  And I personally, have just quit eating stuff like that for now.  I know it has actually done good in the past though.  Despite the herxing.  I KNOW that it helped heal my gut from where it was to now.  And believe me, it's a whole lot better now.  But man, those herxing sessions really mess me up.  At times I would just feel like every cell in my body was on fire and it was really crazy.
I'm there.  I went through a period in which probiotics were big trouble for me.  Then I had a period in which they were no problem.  Now they are giving me trouble again.  I quit taking them because I have a life to live.  Perhaps there is a strain in my current supplement that is incompatible.  Who knows?  I'm not going to force myself to suffer for a benefit that may not materialize, or worse, do something in the name of healing that leaves me worse off than before.

Quoted from JJR
Now, the problem therein lies the fact that I know all of that work helped.  But it was very painful in the process.
Something good for you can feel bad if done to excess.  JJ, I don't doubt that treatment helped, but couldn't it have still helped if done more slowly and moderately, without causing such suffering?  If you expect to feel miserable during treatment, how can you distinguish between a mere Herx reaction and an adverse reaction to the treatment itself?  If I try any treatment, and find that I feel worse for it instead of better, let that be a sign to me that I need to either reduce the intensity or discontinue it entirely.

Quoted from JJR
How does one actually "Shut down those inflammation pathways".  That seems like more of a challenge than the actually putting the words down on paper.  Does the book talk about different methods of doing this TJ?
The herbs in the core protocol do this.  These herbs have anti-bacterial properties, but their main function in Lyme disease is to get the causal mechanisms of the symptoms under control.  There's too much to write out in this post -- 15 pages on the #1 priority herb Japanese Knotweed.  Stephen Buhner doesn't believe that the borrelia spirochetes can be completely eliminated from the body, but that the symptoms can be controlled and the spirochete activity shut down to a minimum, or so I understand it.  His approach deals for symptoms as causal factors.
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Chloe
Saturday, January 14, 2012, 12:13am Report to Moderator Report to Moderator

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Quoted from TJ
I have trouble with my left eye, too, but it's nothing as serious as that, thankfully.


I have trouble with my left eye too...A vitreous gel tear...macular pucker...I need eye surgery
because i can barely see out of my left. But something caused my left eye to disintegrate...I
attribute it to Lyme too!

Yikes, Kim...I hope you will be alright!  Sending you my best wishes.



"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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JJR
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Quoted from TJ
I'm there.  I went through a period in which probiotics were big trouble for me.  Then I had a period in which they were no problem.  Now they are giving me trouble again.  I quit taking them because I have a life to live.  Perhaps there is a strain in my current supplement that is incompatible.  Who knows?  I'm not going to force myself to suffer for a benefit that may not materialize, or worse, do something in the name of healing that leaves me worse off than before.

Something good for you can feel bad if done to excess.  JJ, I don't doubt that treatment helped, but couldn't it have still helped if done more slowly and moderately, without causing such suffering?  If you expect to feel miserable during treatment, how can you distinguish between a mere Herx reaction and an adverse reaction to the treatment itself?  If I try any treatment, and find that I feel worse for it instead of better, let that be a sign to me that I need to either reduce the intensity or discontinue it entirely.

The herbs in the core protocol do this.  These herbs have anti-bacterial properties, but their main function in Lyme disease is to get the causal mechanisms of the symptoms under control.  There's too much to write out in this post -- 15 pages on the #1 priority herb Japanese Knotweed.  Stephen Buhner doesn't believe that the borrelia spirochetes can be completely eliminated from the body, but that the symptoms can be controlled and the spirochete activity shut down to a minimum, or so I understand it.  His approach deals for symptoms as causal factors.


It was really hard for me to control amounts.  Because I was so sensitive.  I mean for example, I'd take an 1/8 of a teaspoon of fermented butter/ cod liver oil, and I would herx for a day.  Or, Manuke honey.  Or, insert certain fermented food.  Now I would make carrots and then eat a 1/4 of one, and work up slowly each day, but then by the time I started herxing, it was too late to control how painful it got.  It just didn't take much is my point.  One time, I put the last 1/3 of the tines of a fork into kefir and ate it, and it sent me into a bad herx for a day.  Just that little bit.  Kefir really caused strong reactions from like practically nothing.  It's just bizarre.  It seems really strange, but my doctors assistant has said the same would happen to her with certain things too.  So, I'm not alone, but it's just crazy.  She is battling lyme's also.


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TJ
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Man, this stuff is pure evil.
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I hear these stories of people drinking gallons of kefir, or how passion princess took a bunch of coconut oil and got rid of a bunch of junk in two weeks and I'm like, NO WAY AM I DOING THAT!!!  I think my head would explode or something.  Hehehehe.  I'd be so inflamed that, well, I don't know what.  I've had a mind to try it and just get it all over with, but my doctor said that wouldn't be good either.  Those inflammation pathways are just blocked in me.  I've always wondered if some NAET wouldn't help that.  But I have no clue how you'd do the treatment for that.  As it's not really an allergy.  I don't think.  Or maybe I could use the food that causes the inflammation during the treatment and then see if I could handle it better.  My son really benefited from NAET when he was about 2 years old.  It helped his allergies a lot, helped calm his system down and eliminated a bunch of eczema.  But the chiro that was doing the treatments is no longer there, and I've yet to find another I want to try to go to.  It's something I may do someday though.  What about you Joe, have you ever tried to use NAET for the inflammation part?


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Ribbit
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I bet NAET would help you not be so sensitive, JJ.  Maybe.

Joe, I've been wanting to tell you about something.  I've been reading "Healing Lyme" that TJ has talked about, and one section about skin problems really stuck out in my mind because it sounds like some of what you've dealt with.  If it's what they're describing, it's a pretty rare reaction, but it does happen.

It's my left eye that's weaker too, and that's the one that the migraines show up in.  That said, the last two times I went to the eye doctor, they changed my prescription to be not as strong...because my eye sight has improved.  Cool, huh?  Surprising.

I'm not doing very well, y'all.  I have good days and bad days, but I think the truth is, it's only a matter of time.  I have asked God for ten more years.  For my kids' sakes.  But I don't know if I'm going to make it or not.  I've convinced myself that my family would be better off without me because I'm such a drag.  All I'm doing is slowing them down.

I'm not sleeping very well.  I'm so cold at night and I can't get warm.  It took me 9 hours in bed last night, under lots of covers, for me to finally warm up.  I mean, most of the time I was asleep, but I still felt cold all the way down to my bones.  Twice I woke up sweating and chilled.  The heat was set on 68, so it's not like it was really all that cold.

I have quit alcohol.  I was using it to help calm my nervous system, but when we figured out how much we were spending (estimated) per month on red wine, we decided that was better used for supplements.  So I just use earplugs nearly all the time so my nervous system isn't on as high alert.

I was eating about 75% raw, or better, but it's not enough.  I still can't digest my food, even taking digestive enzymes and using magnesium oil to keep things moving.  I was needing more than 1 heaping tablespoon of CALM (magnesium) every night to even loosen my bowels a little by the next morning.  I've managed to fracture 3 bones in the last few months.  My digestive system, my central nervous system, my muscular system and my skeletal system are disintegrating.  I'm forgetting how to spell words and I have red squiggles everywhere in my typing and I have to go back and fix them.  I can't think well enough to figure out what's wrong with the word.  And I've always been a good speller.

Oh, well, that should cheer you up real good.

It's NutraMedix I'm going to get the Cowden Protocol from if we chose to go that route.  After finishing this Buhner book, I might do that instead.  We'll see.  They likely overlap a good bit.


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

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Oh Ribbit...I feel so sad for you....the struggling you endure...making no progress with this horrible Lyme disease is heartbreaking to hear...

Just wanted to reach out and send you some {{{{{hugs}}}}}.  Wish I had some answers...Only person
I can think of you contacting would be Dr. Nash. I think she's had success with her Lyme patients.
Ever contacted her?  I know, she's far away..but just wondering if she'd have any suggestions for
you...


"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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TJ
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Ribbit, you can't give in to that pessimism!  "It's only a matter of time" for all of us.  Your family would be lost without you.  Mothers and wives are the heart of the family.  You aren't holding them back; you are holding them together, like the hub of a wagon wheel.  You take the love you receive and multiply it and send it out again to the rest of your family.

I'm not saying that to put pressure on you, just to remind you how important you are just for being there.  If you don't believe me, show Rob what you wrote here and he will set you straight!  The Lord knows your suffering and will provide for what is needed in every way that you can't provide for on your own.  Remember that your children were his children first.  He gave them into your keeping, knowing that the experience they would have with you was an experience they (and you) needed.

I hope you'll also remember that Job was in pretty bad shape for a while, then he came back better than ever.  You and I may yet do the same.  Don't lose hope.
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Oh my God.  Hear her voice.  Lift her up, close.  


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"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Quoted from Ribbit
Joe, I've been wanting to tell you about something.  I've been reading "Healing Lyme" that TJ has talked about, and one section about skin problems really stuck out in my mind because it sounds like some of what you've dealt with.  If it's what they're describing, it's a pretty rare reaction, but it does happen.

Thanks, Ribbit,

I'll have to see if I can find the book.  I'm pretty sure that I've never had Lyme, but some of the nerve damage in my spine / cranium may be similar enough to be indicated in the Lyme symptoms...

As for not being able to regulate temperature well...  I go through that all of the time.  It is rare for me to not fluctuate from too warm (usually only briefly) to too cold and have a long time getting warm.  Sometimes I need to eat more, take some supplements or just rest / sleep.

I'm not able to do much either, so share your frustration.

There are so many times my WW has heard me say something very similar to your "I don't know how much longer...".  None of us knows what time we have left, but I will tell you from my experience, that healing (nerve damage especially) is harder than getting sick.  When I was getting more sick, the body blanked out so much pain that I can't even imagine how much it was.  Now that I'm healing, I seem to have so many more symptoms - in spite of all of the muscle testing showing improvements.  My suggestion is to keep following the diet, doing what the practitioner suggests, and praying that your suffering is beneficial to someone.

I will keep your family in our prayers.


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ABJoe
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Quoted from JJR
What about you Joe, have you ever tried to use NAET for the inflammation part?

Sorry, I missed this question earlier...

I still use the body balance technique that I've shared on this forum several times...  It balances the nerve energy in the body - as much as possible, usually relieving the pain to some degree...  

I can test to determine if the pain is due to an allergic reaction or just nerve pain.  If it is an allergic reaction, and I can determine what the allergen is, then I get major relief from the treatment.  If it is pain from nerve healing, then not as much relief.  Usually I can find some homeopathic that reduces some of the pain, but not to the degree that I can go do anything, just so I'm not pulling hair out, etc...  My body maintains the pain so I remain at a low activity state to allow it to use the energy to do more healing or to not push too much toxin out at once...

Yes, JJ, the Dr. is right.  Pushing too rapidly may just kill you.  It is far better to maintain a steady pace, even if it does seem like it is never going to end, than to end it because you rushed it too fast.  The body will do what it can, as long as we continue to provide what it needs as it goes along.  My practitioner and I just talked about this AGAIN at my last visit.  

Here I am starting my 6th year of major healing and most of the time I still feel like I really don't care whether I continue or not...  It is just that there are those around me who care deeply, and God hasn't chosen to take me yet.  I must still be doing good here.  I submit to his will and continue the fight.


RH-, ISTJ
Wonderful Wife = A+ Teacher; Darling Daughter = A- SWAMI Explorer
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BTD Forums    Diet and Nutrition    The Encyclopedia/ D'Adamo Library  ›  A thread to discuss lyme disease*

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