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A thread to discuss lyme disease*  This thread currently has 174,102 views. Print Print Thread
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Ribbit
Thursday, September 1, 2011, 2:27am Report to Moderator Report to Moderator

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Kyosha Nim
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JJ, I juice dark green leafies nearly every day.  So I'm constantly doing stuff to help my liver.  I also do things that harm my liver, and I know that, but the things I do calm my nervous system in the evenings when I'm overworked, over-stressed and the children are cranky.  


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

Family: 3 As, 1 B, 1 AB, 1 O
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JJR
Thursday, September 1, 2011, 3:49pm Report to Moderator Report to Moderator

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Quoted from Kim
Tomorrow is my 3 hour appointment with my LLMD. I have waited two months for this.  I have to leave my house at 6 am to make it to DC for an 8:30 am appt.  Lots of traffic in the am in the DC area.  

If you have watched the documentary "Under Our Skin", you would have seen my LLMD speak in the documentary, he is Dr. Jemsek.  

Will post an update tomorrow afternoon.


That is exciting for you.  I'll pray for a safe, quick and fulfilling journey.  Peace be with you.


The poster formerly known as "ABNOWAY"

"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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JJR
Thursday, September 1, 2011, 3:52pm Report to Moderator Report to Moderator

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Kyosha Nim
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I need to start doing more of these "greens".  I have avoided them for a long time for some reason.  When I eat beets I feel awful, so I've always been shy of eating stuff that goes after your liver.   And when I had liver I felt awful too.  So, I'm shy of the foods that cleanse your liver.  I think I felt awful because it probably really needs to be cleaned out.  When I take betafood from standard process, ugh.  But I do take silymarin from time to time and it's good.  

How do you "hurt" your liver?


The poster formerly known as "ABNOWAY"

"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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Kim
Friday, September 2, 2011, 12:11am Report to Moderator Report to Moderator

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Three hours for a doctor's appt is a long, long time.  I have multiple coinfections and severe neurologic problems.  Even though  I have to go up stairs several times a day for my dogs, I have so much muscle weakness in my legs.  It has been getting worse and the weakness showed up on the exam.  My reflexes were extremely slow.

Antibiotics will not start until late October.  My central nervous system is going nuts and I have lots of nerve pain.  We are adding a few supplements to my regimen and some medications to try and quiet the CNS before the antibiotics start.  Right now, my body can't handle the antibiotics yet.

They also said I need to finally get the bad gallbladder out.  It hasn't been working well and it is a source of inflammation.  I am supposed to see if my insurance will pay for a brain spect scan.  Cognitive function is at an  all time low and I panic when I am so forgetful.  

The  doctor also explained that there is no absolute way to know you got rid of the spirochetes totally.  These little critters can morph their dna and hide so well in the body.  Getting your immune system to recognize them and fend them off is the goal.  If I can get to remission, that is a good place.  It is just going to take some time.

As far as diet, I am on the best possible food  plan with swami.  The digestion problems are  going to get better with time as the lyme load goes down.  For now, I follow swami and make sure that I keep tract of any foods that bother me even  if they are a beneficial.
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Drea
Friday, September 2, 2011, 12:39am Report to Moderator Report to Moderator

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Well, even though the diagnosis isn't the best, at least you know where you stand (or sit ) and can move forward. You also have validation, which I find to be helpful.

I'm sending you some positive energy and a {{{{hug}}}}.


It is not my responsibility to convince anyone of anything.
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Ribbit
Friday, September 2, 2011, 1:16am Report to Moderator Report to Moderator

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Kim, I understand the neurological stuff.  I asked the chiropractor Wednesday if I could see my 8 y.o.'s latest x-rays to check the improvement on her scoliosis.  I didn't remember that I'd already seen them.  It makes me cry to realize that my memory is so horrible.


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

Family: 3 As, 1 B, 1 AB, 1 O
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Ribbit
Friday, September 2, 2011, 1:22am Report to Moderator Report to Moderator

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Kyosha Nim
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JJ, I indulge in a glass or two of wine to calm my nervous system.  I know it destroys my liver.  But I struggle to function without it in the evenings cooking dinner with the insanely loud chaos that happens around here, particularly when Rob is traveling.


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

Family: 3 As, 1 B, 1 AB, 1 O
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ABJoe
Friday, September 2, 2011, 3:42am Report to Moderator Report to Moderator

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Quoted from JJR
I need to start doing more of these "greens".  I have avoided them for a long time for some reason.  When I eat beets I feel awful, so I've always been shy of eating stuff that goes after your liver.   And when I had liver I felt awful too.  So, I'm shy of the foods that cleanse your liver.  I think I felt awful because it probably really needs to be cleaned out.  When I take betafood from standard process, ugh.  But I do take silymarin from time to time and it's good.  

How do you "hurt" your liver?

You're just going to have to bite the bullet and get started.  You can start slow, but do it.  If the liver can't filter more junk out because it is too sluggish to get rid of it, you'll never feel better.

From all of the reading I've done, the liver gets sluggish from simply too much toxin.  It gets overloaded and starts storing the toxins, the more it stores, the less it can process...  Ugh...  Part of the task is to get / keep the gut operating properly and the rest is to clean out the liver / spleen / pancreas.

I think it all happens together slowly - with the body choosing where the focus should be at the time.


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JJR
Friday, September 2, 2011, 3:59pm Report to Moderator Report to Moderator

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Thank you for the kick in the butt Joe.  I will take it to heart.  I do take Silymarin, as I said, and I'm sure other foods may help.  But yeah, there are quite a few that are supposed to be good for your liver that really mess with me.  Or have.  I haven't really tried any of the greens, yet.  Well, not a lot of them.  I also drink Dandelion root tea regularly.  Once or twice a week.  



Kim, thank you for the update.  I'm so glad you're going to someone that knows how to treat it.  I will say this though, some Arthichoke Leaf Extract may be a good thing to try before removing your gall bladder.  My doctor thinks it is very effective at cleaning it out.  My leg muscles feel pretty weak at times also.  Every once in a while, my legs will feel like buckling.  But I don't feel like I have a problem getting up and down stairs too much.  Although I avoid my basement. More so because it just doesn't seem that clean down there and can mess with me.  We are working on that though.

Leanne, I'm sorry to hear about your memory stuff.  Maybe it will get better.  I wonder if there isn't some kind of food or supp that will help.  Like Cod Liver Oil or Lutein.


The poster formerly known as "ABNOWAY"

"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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Kim
Friday, September 2, 2011, 4:14pm Report to Moderator Report to Moderator

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JJ, what brand of artichoke leaf extract do you use?  

I don't want to get my gallbladder out.  I think that the dieting I have done in the last 18 months has to do with some of the problem.  DH wants me to get it out, but I would try the artichoke leaf extract first.  
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Ribbit
Friday, September 2, 2011, 5:21pm Report to Moderator Report to Moderator

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What?  Did somebody say something?


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

Family: 3 As, 1 B, 1 AB, 1 O
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Kim
Friday, September 2, 2011, 7:16pm Report to Moderator Report to Moderator

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Quoted from Ribbit
What?  Did somebody say something?


If you are referring to my post about my gallbladder...the doctor I saw yesterday said to get my gallbladder taken out because I was sensitive when she examined the upper right area under my ribs.  I had a hida scan 3 years ago and the ejection fraction was 26 when optimal is 32.  The GI doctor did not tell me to get it out, but with all the dieting I have done to get over 120 lbs off in the past 18 months, it does  act up sometimes when I eat too much fat.  It has been much, much better since starting GTD/Swami.  

I was told that about 70% of lyme patients have diseased gallbladders.  Seems that the spirochetes love to live there.  They said that it is more than likely causing a lot of inflammation and it will make treatment very difficult if my gallbladder is inflammed.  

I ordered some artichoke leaf extract and am going to try that for a while.    I don't want to get another hida scan.  Laying on the table for a 45 minute test was brutal on my back and neck.

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ABJoe
Friday, September 2, 2011, 7:40pm Report to Moderator Report to Moderator

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Quoted from Kim
If you are referring to my post about my gallbladder...the doctor I saw yesterday said to get my gallbladder taken out because I was sensitive when she examined the upper right area under my ribs.

Are red beets a beneficial food for you?  When I had gall bladder problems, they were recommended for me in large quantities (or take some concentrated beet in supplement form).  I still use them when I have pain...


RH-, ISTJ
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Kim
Friday, September 2, 2011, 8:47pm Report to Moderator Report to Moderator

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Quoted from ABJoe

Are red beets a beneficial food for you?  When I had gall bladder problems, they were recommended for me in large quantities (or take some concentrated beet in supplement form).  I still use them when I have pain...


Yes, beets are a diamond for me.  I eat them everydaý.  Never get tired of them.  Also, if I have pain, dandelion tea gets rid of it most of the time.  
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JJR
Friday, September 2, 2011, 9:20pm Report to Moderator Report to Moderator

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I didn't know beets would do your gallbladder too!  Cool.

My doctor has his own blend made up, but before that he used I think it was called Integrative theuraputics.  

http://shop.elementalshealthfood.com/SPD/artichoke-extract-120-caps---8542986641344659199.jsp

His prices are reasonable for his blends.  And they seem to do the same thing.


The poster formerly known as "ABNOWAY"

"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
Saturday, September 3, 2011, 12:44am Report to Moderator Report to Moderator

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Quoted from Lola
Dr Nash just posted this on FB
https://www.facebook.com/UNDEROURSKIN
I just finished watching it on Hulu.  More and more I am convinced that I have been dealing with chronic Lyme myself.  Me feeling better back when I was on the antibiotics, then feeling worse again off of them, makes good sense now in that context.
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JJR
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It does make sense.   Maybe when you get the biofeedback done again you could ask them to check it out, eh?


The poster formerly known as "ABNOWAY"

"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
Saturday, September 3, 2011, 12:57am Report to Moderator Report to Moderator

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Tomorrow is my 3 hour appointment with my LLMD. I have waited two months for this.  I have to leave my house at 6 am to make it to DC for an 8:30 am appt.  Lots of traffic in the am in the DC area.  

If you have watched the documentary "Under Our Skin", you would have seen my LLMD speak in the documentary, he is Dr. Jemsek.  

Will post an update tomorrow afternoon.
So he is back in business?  Awesome!
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TJ
Saturday, September 3, 2011, 1:01am Report to Moderator Report to Moderator

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Quoted from JJR
It does make sense.   Maybe when you get the biofeedback done again you could ask them to check it out, eh?
I don't think she could check for specific diseases with her equipment.  It was just to look at body systems suffering from inflammation or degeneration.  Thankfully I had none of the latter going on!  I am going to start looking around for a practitioner that is Lyme-literate or at least open-minded to the idea of chronic Lyme disease.  I'd be surprised in my NP doesn't fall into one of those categories.

I sure am glad I've been taking Genoma Security.  It will be on my program for a long time to come.  I think I should go up to 3x per day instead of only twice as directed.
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JJR
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You might be surprised what they can figure out with those things.  Plus, if there programs have a protocol for that "spirochete" or "babesia/maleria" or any other co infection, I bet it can see it.  But yes, typically they see what is on the top of your priority list.  But that doesn't mean that can't have a look see at other things.  Sometimes just thinking about it, brings it to the front.


The poster formerly known as "ABNOWAY"

"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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Ribbit
Tuesday, September 6, 2011, 2:39am Report to Moderator Report to Moderator

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Quoted from Ribbit
What?  Did somebody say something?


Just sort of making a joke about being so scatter-brained.


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

Family: 3 As, 1 B, 1 AB, 1 O
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JJR
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I caught it!  

How are you today?

It's been cooler up here and it seems like my body likes it.  


The poster formerly known as "ABNOWAY"

"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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Tuesday, September 6, 2011, 7:26pm Report to Moderator Report to Moderator

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Does anyone else get depressed? I get so depressed when I have my Babesia symptoms. I just cry and cry.  


"Anxiety is the gap between now and then"

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JJR
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I'm sure it has affected my emotions.  But to be honest, I've always been sensitive.  I'm one of those types that'll cry at a hallmark commercial.  I think it's just all I've been through.  I also have struggled with temper forever.  I'm getting better though, praise God.  I actually get more irritated and short fused when I'm feeling better.  But maybe I've been dealing with this longer than I think and that's what makes me emotional.  I don't know.  

I'm sorry you're depressed.  A better day is coming!!!!!!!!!!!!!!!!!!!!!!!!!!!  What a difference a day makes!

I'm not skilled enough to know what type of bacteria is messing with me at present.  I just know I go up and down with fatigue.  Then during the herxing sessions, I feel awful.  Which, I think it will be time to start doing soon again.  For a while I've felt like just support and flush and no killing.  Except for the Homeopath.  But I think my body and mind is gearing up into killing mode.  I'm craving fatty meats, like lamb and whole turkeys or whatever.  And my body has been real calm the last couple of days.  Almost, too calm.


The poster formerly known as "ABNOWAY"

"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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