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A thread to discuss lyme disease*  This thread currently has 159,887 views. Print Print Thread
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C_Sharp
Wednesday, January 25, 2012, 1:05am Report to Moderator Report to Moderator

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Sa Bon Nim
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Quoted from Ribbit
I'm not doing very well


I am sorry to here this.

You have always been an inspiration to me!

And you continue to be!

I wish you did not have so many challenges.  But I know my wishing does not mean they go away.

One thought in parting. When we are strong most of us like to rely on our own strength. When we are weak, God is strong.


MIfHI                            I follow a SWAMI diet.
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TJ
Wednesday, January 25, 2012, 4:13am Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from C_Sharp
I am sorry to here this.

You have always been an inspiration to me!

And you continue to be!

I wish you did not have so many challenges.  But I know my wishing does not mean they go away.

One thought in parting. When we are strong most of us like to rely on our own strength. When we are weak, God is strong.
I wish there was a "Like" button for posts here.
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ruthiegirl
Wednesday, January 25, 2012, 8:08pm Report to Moderator Report to Moderator

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Kyosha Nim
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I still don't know what's wrong with me. I read some of the posts on this thread and I think "I can't have Lyme's Disease. I'm just not sick enough." But then I read about people with fibromyalgia who completely heal after a few months on BTD, and I know that something else is going on with my body, and if diet alone was going to heal me, I'd probably be healed by now. I just don't know WHAT the problem is with my health or what to do about it.


Ruth, Single Mother to 19yo   O- Leah , 18yo O- Hannah, and  12yo B+ Jack


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Kim
Thursday, January 26, 2012, 11:04am Report to Moderator Report to Moderator

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Ee Dan
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Seeing a new Lyme doctor today.  She and all of her family have had Lyme and she lost a sister to late stage Lyme that went into AlS.  She is more aggressive and adds homeopathics from the beginning with the antibiotics.  I should be going on IV antibiotics in a few weeks, as soon as I can have a port put in.  I will be doing a double lumen port, so that I can do IV magnesium, or glutathione if needed.  I really need to do major detox and with all the malabsorption that is going on, IV is the best way to jump start that.  The melthylcolbalamin injections I do daily are really helping.

The Lyme is destroying my spine.  I am hoping that the IV antibiotics can stop that damage so that I am not going to be an old lady in a nursing home being spoon fed.  

The new doctor follows Weston Price, so I emailed her the print out of my swami to show her what I am eating.  I am hoping to educate her about individuality and the work of Dr.D'Adamo.  

She does not use a cookie cutter approach for treatment so she should be open to the Geno Type way of eating.  I have been on Swami almost a year now.  I should redo my fingerprints to see if anything has changed.  I still can't eat a lot of my beneficial foods, but now I can at least eat quinoa. Yea!!!

My eye is better but the cornea is still inflamed.  Friday I see the eye doctor and hope that my vision loss is restored.  Unfortunately, this is a common problem for people with Lyme and will most likely reoccur because I have such issues with my eyes.

If anyone wants to follow my treatment on caringbridge.org, just pm me for the website.  I am being extremely transparent in what I am going through and hope it will help others.

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Kim
Thursday, January 26, 2012, 11:07am Report to Moderator Report to Moderator

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Ee Dan
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Quoted from ruthiegirl
I still don't know what's wrong with me. I read some of the posts on this thread and I think "I can't have Lyme's Disease. I'm just not sick enough." But then I read about people with fibromyalgia who completely heal after a few months on BTD, and I know that something else is going on with my body, and if diet alone was going to heal me, I'd probably be healed by now. I just don't know WHAT the problem is with my health or what to do about it.



Ruthie,
My husband also has Lyme but with only a few symptoms.  It can't hurt to find out from a Lyme Literate physician if it is possible.  Not everyone is very sick with this until they have had it a very long time.  Might be worth checking out as this has to be a clinical diagnosis.
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ruthiegirl
Thursday, January 26, 2012, 6:50pm Report to Moderator Report to Moderator

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I'm just not sure how to go about paying for a LLMD. It's not like I can work, and SSI barely covers the bills. My ex can't pay child support until he finds a job, and he'd need to work for a year (good luck with him holding a job that long) to pay back the money he's borrowed from the kids and then to repay me for months of no child support so I can repay what I  borrowed from my Mom. There is NO money for out-of-pocket treatment, and my list of doctors is very limited with Medicaid.

The logical place to start is with my PCP when I go for my annual physical next month, if I can figure out which tests to ask her to run and/or which specialists to ask for a referral to. Would a rheumatologist check for Lyme's? Or a different specialist? I know I can get a rheumatologist refferral due to the fibromyalgia; I've been to him before. It's just that all he had to offer me was pain meds, and the side effects were worse than the symptoms.


Ruth, Single Mother to 19yo   O- Leah , 18yo O- Hannah, and  12yo B+ Jack


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Ribbit
Thursday, January 26, 2012, 9:59pm Report to Moderator Report to Moderator

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Kyosha Nim
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All of your words mean more than I can express.  Thank you.


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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Chloe
Thursday, January 26, 2012, 11:41pm Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from ruthiegirl
I'm just not sure how to go about paying for a LLMD. It's not like I can work, and SSI barely covers the bills. My ex can't pay child support until he finds a job, and he'd need to work for a year (good luck with him holding a job that long) to pay back the money he's borrowed from the kids and then to repay me for months of no child support so I can repay what I  borrowed from my Mom. There is NO money for out-of-pocket treatment, and my list of doctors is very limited with Medicaid.

The logical place to start is with my PCP when I go for my annual physical next month, if I can figure out which tests to ask her to run and/or which specialists to ask for a referral to. Would a rheumatologist check for Lyme's? Or a different specialist? I know I can get a rheumatologist refferral due to the fibromyalgia; I've been to him before. It's just that all he had to offer me was pain meds, and the side effects were worse than the symptoms.


A rheumatologist might or might not be literate in diagnosing or treating Lyme...but it's a place
to start if you can't find a LLMD who takes Medicaid.  Another thought is an infectious disease
specialist....You're going to have to see who your PCP can refer you to....and pick the best of
the best, even if you wind up having to see many different doctors. If I were you, I'd just go
through the system that you're financially able to use....because it doesn't seem like you have
any other options right now.  Perhaps someone can test you for basic Lyme plus some co-infections like Bartonella....erlichiosis...etc.



"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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TJ
Friday, January 27, 2012, 3:21am Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from ruthiegirl
I know that something else is going on with my body, and if diet alone was going to heal me, I'd probably be healed by now. I just don't know WHAT the problem is with my health or what to do about it.
Right on!  I've been on since August 2007 and have experienced clear benefits, but I'm still struggling beyond what makes sense if there was nothing else holding me back.  Pretty clearly, my gut hasn't healed yet even though I've been on a low- to no-gluten diet since 2008.
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JJR
Friday, January 27, 2012, 6:33am Report to Moderator Report to Moderator

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Yeah, I'm in with you all.  I have faithfully followed this diet, closer than anyone I know of, not counting the hardcore people on here, and it has not "healed" me.  BUT, I think it helps.  I think the foods recommended on my swami make a difference and a positive impact on my health.  So, I'm not discounting it.  I just don't think it's enough on it's own to overcome certain issues.  Some of us just need more help.  I've been attacking it from every angle I can.  Spiritual, emotional, physical, mental.  And eating is just one aspect of that.  Albeit a very integral, important aspect.  And now that I'm to a point where I'm eating to point of not starving myself, I can see it has made a big difference.  But there have been times that even that didn't seem possible, as my stomach just didn't want food.  

Anyways, what a blessing it is to have a place where we can come and bounce ideas off of each other and support each other.  Because the roads we've been given are not easy.  I'm not saying people that don't have our specific problems aren't struggling.  I'm just saying it's nice to be understood.  Because it is a significant health challenge to deal with.  Meaning lyme's.  But I'm not limiting it to just that.  I know there are others on here who might not have lymes that still have real, painful issues to overcome.  Grueling ones.  We are all stronger for it.   Well, in some way we're stronger.


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
Saturday, January 28, 2012, 1:08am Report to Moderator Report to Moderator

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Quoted from TJ
Right on!  I've been on since August 2007 and have experienced clear benefits, but I'm still struggling beyond what makes sense if there was nothing else holding me back.  Pretty clearly, my gut hasn't healed yet even though I've been on a low- to no-gluten diet since 2008.


Yep.  Same here.


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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Spring
Saturday, January 28, 2012, 4:31am Report to Moderator Report to Moderator

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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.  

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 assume that you take Boswellia for the inflammation? It really works wonders for me.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Spring
Saturday, January 28, 2012, 4:45am Report to Moderator Report to Moderator

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Quoted from TJ
I wish there was a "Like" button for posts here.


Me too!!


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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JJR
Sunday, January 29, 2012, 1:51am Report to Moderator Report to Moderator

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Nope, never had boswellia.  I've had quercitin.  And I've had wobenzym.  And every once in a blue moon when things are really bad, I'll take tylenol.


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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Spring
Sunday, January 29, 2012, 5:15am Report to Moderator Report to Moderator

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Quoted from JJR
Nope, never had boswellia.  I've had quercitin.  And I've had wobenzym.  And every once in a blue moon when things are really bad, I'll take tylenol.

Take boswellia - not Tylenol. It isn't worth the time of day for inflammation!


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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JJR
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Well Spring, maybe I'll try boswellia, but I beg to differ on the latter.  Now, I'm not one to take drugs.  And when I say once in a blue moon, I mean once in a blue moon.  The last time I had it was in November.  I took it 3 times.  I was having a real bad spell, where my heart rate would get real high, I'm in bed, I'm slamming water all day, I'm inflamed and when I take the tylenol, it calms my body down.  My heart rate drops some, I don't hurt as much everywhere, and I feel like it escaped me from ending up in the ER.  And for what it's worth, I take 1/4 of a tablet of 320mg.  That's 80mg.  I logged it in a little notebook to know.  I don't take it very much, and it does work.  Now, is it the best thing for me in the long run?  Probably not.  And I can experiment with boswellia too.  I will ask my doctor about it.  But make no mistake, the little bit of tylenol works for me in the very accute times that I've experienced.  YMMV.     


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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akolley
Monday, January 30, 2012, 9:15pm Report to Moderator Report to Moderator

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Positively fasinating perspective from a neurosurgeon.

http://jackkruse.com/hey-lyme-disease-meet-leptin/


We are Gods pot of clay that he molds to edify his glory.
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nowishow
Wednesday, February 1, 2012, 12:20am Report to Moderator Report to Moderator

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Quoted from JJR
Well Spring, maybe I'll try boswellia, but I beg to differ on the latter.  Now, I'm not one to take drugs.  And when I say once in a blue moon, I mean once in a blue moon.  The last time I had it was in November.  I took it 3 times.  I was having a real bad spell, where my heart rate would get real high, I'm in bed, I'm slamming water all day, I'm inflamed and when I take the tylenol, it calms my body down.  My heart rate drops some, I don't hurt as much everywhere, and I feel like it escaped me from ending up in the ER.  And for what it's worth, I take 1/4 of a tablet of 320mg.  That's 80mg.  I logged it in a little notebook to know.  I don't take it very much, and it does work.  Now, is it the best thing for me in the long run?  Probably not.  And I can experiment with boswellia too.  I will ask my doctor about it.  But make no mistake, the little bit of tylenol works for me in the very accute times that I've experienced.  YMMV.     


I know what you mean. I have intense pain in my heart that nothing else will touch except pain medication. When I need it, I really need it. Or I'll end up in ER where they'll really give me some meds.  


"Anxiety is the gap between now and then"

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Spring
Wednesday, February 1, 2012, 1:29am Report to Moderator Report to Moderator

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Quoted from akolley
Positively fasinating perspective from a neurosurgeon.
http://jackkruse.com/hey-lyme-disease-meet-leptin/

You are right about that! Fascinating! I have noticed for several years that some people will get really sick after losing a lot of weight. I had read that toxins were released from fat cells when people lost weight, but it didn't seem to affect some as bad as others. Which reminds me, this was nearly fifty years ago when I read that! How time flies!!


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Ribbit
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Here's an interesting chart outlining the different lyme symptoms.

http://www.lyme-symptoms.com/LymeCoinfectionChart.html


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
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Kyosha Nim
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Lyme should be capitalized.  I can't spell anymore.


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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Andrea AWsec
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Ruthie--- maybe you can go to UB explain your situation and see what they say. Since it is a clinic they may help.

Also consider what wellness means emotionally for you-- might it mean you would have to go to work and not collect your SS payment anymore?

Something else is keeping you from health and it may be time to think deeply about this.


MIFHI

"Do not try to satisfy your vanity by teaching a great many things. Awaken people's curiosity. It is enough to open minds; do not overload them." Anatole France

"Healthy people have the least overt symptoms from eating avoid foods." Dr. D'Adamo
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Spring
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Quoted from nowishow


I know what you mean. I have intense pain in my heart that nothing else will touch except pain medication. When I need it, I really need it. Or I'll end up in ER where they'll really give me some meds.  

I never meant to suggest that there is never a time to take pain medication. But this is from the Tylenol site itself about whether or not Tylenol helps inflammation:
Does Tylenol help inflammation (swelling)?
Acetaminophen, the active ingredient in Tylenol, has not been shown to reduce inflammation.

Inflammation was what I was posting about.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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JJR
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I don't care what their website says.  It works for me.  And maybe it isn't "anti inflammatory" per se, but it sure calms my system down, helps reduce what seems like inflammation in my whole body, including my aching head, and takes something very accute and dulls it a bit.  I was recommended tylenol because of the other aspirins and what not don't clear my system as well.  

Again, I take it very seldom.  I haven't taken any since that last bout in November.  So, the little bit I take it, I'm not beating myself up over it at all.  


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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Chloe
Sunday, February 5, 2012, 7:23pm Report to Moderator Report to Moderator

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"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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BTD Forums    Diet and Nutrition    The Encyclopedia/ D'Adamo Library  ›  A thread to discuss lyme disease*

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