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A thread to discuss lyme disease*  This thread currently has 164,759 views. Print Print Thread
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TJ
Saturday, September 29, 2012, 12:24am Report to Moderator Report to Moderator

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Turkey is a regular for me. I take Bs in my multivitamin, and I take a 1 gm cap of fish oil 3x daily, in addition to all the other herbs and supps. (sneeze, cough)
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Amazone I.
Saturday, September 29, 2012, 8:25am Report to Moderator Report to Moderator

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Kyosha Nim
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just got the info from inductionsanalyses-    it seems I've been suckled from those ticks giving special infos from bor.afzelli, bor.duttoni and bor.recurrentis ... I never visited those countries where those beautiful little beasts are living
(sauf in 1986 I stayed for christmas in Haiti but didn't got any infection at all!!!)
...ok more PT sessions and antibacterial protocols, included
antivairal and antifungals ......I'll hope to be pretty clean and neat soon.... ..............


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TJ
Saturday, September 29, 2012, 4:14pm Report to Moderator Report to Moderator

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I'm sorry to hear that Amazone. Good luck in your treatment!
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JJR
Saturday, September 29, 2012, 7:24pm Report to Moderator Report to Moderator

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I think you can get it from other sources than just deer ticks.  I hear articles bantered about that you can maybe get it from mosquitoes too.  I would think any little beastie that clings to a carrier vermin, like a rat or something, and then goes to the human, could transfer it.  I know it's not real comforting if that is the case, but I think it's possible.  

Just like we know someone that caught the west nile virus in Wisconsin here.  A brother in law of my wife's friend from work.  I'm not sure there is a way to stay away from these things.  They're just taking it to us.  All you can do is pray that God will protect and heal us, whether or whether not we get these things.  

And Amazone, supposedly it came from Europe anyways.  There was a guy they dug up out of the ice that had been there a while and they said he had it.  Over there somewhere.  It was something that happened this last year.


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
Sunday, September 30, 2012, 12:21am Report to Moderator Report to Moderator

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Isn't "Alpine" indicative of where you are Amazone?  It says the University of Switzerland were the ones doing this test, I think it said.  It was probably one of your forefathers.  Hehehhehe

Thanks for the line TJ.  At least people know I wasn't making it up.  .


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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Amazone I.
Monday, October 1, 2012, 7:36am Report to Moderator Report to Moderator

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must be decades ago the visit of such a beast on my skin .... but it still scarries me only the thought....

do you speak about swiss provinience and ticks ...JJR Hmm... I don't know... I grew up merely in southern-mediteranien  regions.....


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JJR
Monday, October 1, 2012, 3:44pm Report to Moderator Report to Moderator

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Aaaah.  But you're still closer to this guy than I am.  Hehehhe  And I still got 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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TJ
Thursday, November 8, 2012, 3:05am Report to Moderator Report to Moderator

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I got my test kit from Igenex yesterday. Now to decide who I should take it to.

Revision History (1 edits)
TJ  -  Thursday, November 8, 2012, 1:35pm
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TJ
Thursday, December 20, 2012, 1:47am Report to Moderator Report to Moderator

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IGenex faxed my results to my physician's office today, and I picked them up after work:

Lyme IgM Western Blot: NEGATIVE. All bands negative except **41 and **83-93, which were marked indeterminate.
Lyme IgG Western Blot: NEGATIVE. All bands negative except **41 and 58, which were positive.
Serum and whole blood PCR's: both NEGATIVE, for both genomic and plasmid DNA.

** From the report: "Presence of only one double starred band or indeterminate double starred bands in a negative report may indicate clinical significance. Therefore, we recommend testing with another method and/or retest in 4-6 weeks."

I'm not sure what to think at this point. This is iGenex, after all. If they couldn't find it, I don't know of anyone who can. If I do have it, why wouldn't it show up? I contacted the cardiologist's clinic and requested them to prepare a copy of my records for me to pick up. In the meantime, I'm trying hard to avoid anything that will put my heart under a load, which is when it seemed to be leaking. It really makes me crazy.

Cross-posted from Waiting, waiting, waiting: Lyme disease? ASD/PFO?
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Spring
Thursday, December 20, 2012, 4:15am Report to Moderator Report to Moderator

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Quoted from TJ
In the meantime, I'm trying hard to avoid anything that will put my heart under a load, which is when it seemed to be leaking. It really makes me crazy.


I can certainly sympathize with you, TJ. I went through that same anxiety when I had the awful reaction to Clorox. I would be so nervous at night with worry about my heart that I was calling my doctors regularly around ten o'clock because I would be having all the symptoms of a heart attack. Finally, one of them told me in his office one day that the only way they could be absolutely certain that I didn't have a life threatening problem with my heart was to do a catheterization. Of course, I eventually recovered from the reaction after several months and lost nearly 40 pounds during that time. I'm thankful that the anxiety and the effect it was having on me is gone now. I do have a little arrthmia now and then if something comes along that is upsetting.

I do hope you can soon get this sorted out once and for all. You have spent so many years trying to get better.....  


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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TJ
Thursday, December 20, 2012, 5:19am Report to Moderator Report to Moderator

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Thank you Spring.
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JJR
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I highly recommend going to an ND with a biofeedback machine that will show what is going on with you.  I trust those systems more than I do just about anything else.  

It seems like you're skeptical of what the cardiologist said.  Although I can understand it, you can't live like that.  One thing you could do is take the results, (they can download it on a CD for you) and take it to another guy.  For some peace of mind.  But at some point you have to trust that they know what they're talking about.  Or you'll never have peace of mind.  Yeah, I understand that doctors aren't perfect, they make mistakes, and we need to be proactive.  But we can be proactive to the point that it's too far.  I don't know if that's what's happening with you or not.  But I can just feel the anxiety in your posts.  

It's going to be OK TJ.  You're still with us.  You're breathing.  You're alive.  Yes, you don't have optimum health and that is a big pain.  But maybe you can get to a point where you are just OK with where your body is at right now.  You are fearfully and wonderfully made.  God knit you together and your body has a capacity to heal all on it's own.  Be patient with it.  Let it work.  You don't always need a drug, supplement or the perfect food to make it all work.  Those things are good and things we need to strive for.  Yet our bodies and the world is imperfect and I know I need to rest in that.  

Do you have someone near you that you can talk to about these things that will understand?  I pray that you do and if not, that someone comes into your life that is that person.  If I didn't have my wife and a few other people to lean on, I'd be a mess.  More than I was and am.  And you can lean on us too.  Sometimes a fleshly person, right next to you helps though.  

I'll be praying for 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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TJ
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I had an appointment with my Doctor.  His next thing for me is to take a probiotic.  He thinks that it will help kill the lymes. Something about the probiotics getting into the cells and dealing with the invader at a cellular level.   For some reason I'm skeptical about his thinking.  Not so much because I think it's a bad thing, but it just seems like his focus is the probiotics for just about anything.  Maybe they do cure it.  I don't know.  

I'm worried about taking them from the detox pain I get from them.  Although I do know that in the past it has helped my gut.  And I've been off of them for a year because I felt like I needed a break from the ups and downs of taking, then detoxing.  It just seemed hard on my body and I was focusing on gaining weight.  Which I did.  My scale said 139 last night.  YAY!!!!!!  November of 11 I was 114 pounds.  Scary.  

Anyways...  what do you guys think.  Do I need another opinion.  Another doctor?  Or just do what this one says and take probiotics.  He wants me to take something called "complete probiotics".  


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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Averno
Thursday, January 17, 2013, 10:48pm Report to Moderator Report to Moderator

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AB  Polyflora probiotics have worked miracles for me. I'm rather surprised that given all your health issues, you haven't been on them all along.  Does your doctor understand that each blood type has a specific bacterial requirement?

I would be concerned about introducing colonies into your gut that would compete with the specific bacteria that your AB gut requires.  You should find out if there are caveats to the BTD approach before possibly diminishing the gut that you're trying to build.
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TJ
Thursday, January 17, 2013, 11:23pm Report to Moderator Report to Moderator

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Quoted from JJR
I had an appointment with my Doctor.  His next thing for me is to take a probiotic.  He thinks that it will help kill the lymes. Something about the probiotics getting into the cells and dealing with the invader at a cellular level.   For some reason I'm skeptical about his thinking.
I agree with the approach but not the rationale. Probiotic bacteria escaping your gut and putting down roots in other parts of your body is called sepsis, I believe, and that can kill you! As far as the detox/adjustment to the probiotics goes, just go slow. It took me a few weeks to get through it. Trust me, it's worth it.

Quoted from JJR
My scale said 139 last night.  YAY!!!!!!  November of 11 I was 114 pounds.  Scary.
You outweigh me now. I'm down to 132 since I quit grains again.

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ABJoe
Friday, January 18, 2013, 6:29pm Report to Moderator Report to Moderator

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Quoted from JJR
His next thing for me is to take a probiotic...  He wants me to take something called "complete probiotics".

The "Complete Probiotics" is a product put out by Mercola.  Here is a link to it's description / sales pitch:  http://probiotics.mercola.com/probiotics.html  

It seems that there is some real thought put into this product, however there are some things I DON'T like about it:
1) The 2 Probiotic strains that are in Polyflora AB are missing from this.
2) There is no indication what source of the prebiotic "Fructooligosacarides" is.  Does it contain some lectin that will cause me significant discomfort / damage?
In my opinion, we AB's need to ask these question more than other types since we are the minority.  Things that work for the majority are less likely to work for us...
  


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JJR
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Quoted from TJ
I agree with the approach but not the rationale. Probiotic bacteria escaping your gut and putting down roots in other parts of your body is called sepsis, I believe, and that can kill you! As far as the detox/adjustment to the probiotics goes, just go slow. It took me a few weeks to get through it. Trust me, it's worth it.

You outweigh me now. I'm down to 132 since I quit grains again.



Yeah, the grains seem to keep weight on me. AT least help it.  I think potatoes help me do that too.  

TJ and Averno, I've been on probiotics quite a bit throughout my journey.  I took a break from them this last year because of the detox.  TJ, it's not just a couple of week break in for me.  I've taken them for years and always had to take and then cut back or get off to detox and cleanse.  Up and down, up and down.  It's always the case for me.  Two weeks is nothing in that process.  

Thank you Joe.  That is valued input right there.  My concern is that nearly every other Lyme Practitioner or people with their heads in that game do more than just a probiotic.  And that's bothering me.  There are a couple of other things that are bothering me about his input to me, but I don't know if it's just me not understanding, or if some really is off.  

For example:  He is a holistic doctor and has recommended books that preach a "If you believe it, you can heal" theology. Or basically the power is in your hands.  Yet I asked him at my appointment if my body could fight off the lymes all on it's own, he said basically no.  And said something like "Americans" systems are not robust enough to root it out at the cellular level.  Or something to that degree.

To address the first part of that, it seems contradictory.  I'm supposed to believe I can heal and I will, but then he says we can't with lymes disease.  Personally, I don't like the whole "you can do anything you want" theology, as I think it leaves God out of the picture.  But whatever, people can believe what they want. I'm not saying there isn't power in our beliefs, I just believe there is a higher power that has it all figured out and is shaping it all.  Not me.  

And that second part about "Americans" not being able to do so, in comparison to foreigners, maybe there is some truth to it.  I don't know.  But it kind of has me scratching my head.  

He has helped me a great deal through my health problems.  But he's not the only one that ever has.  I like it because he's an MD and can prescribe medicine if needed, but relies on other methods to a large degree.  But for some reason with this lymes thing, I feel like something is off.  And I don't know if it's me, or if it's the truth.  But I'm trying to get counsel from different places to see if it's time for me to move on.  I may go back to the ND I saw and have him hook me up to the machine and see what he says.  I suppose I could use both doctors.   Is that a terrible idea?


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, January 19, 2013, 2:42am Report to Moderator Report to Moderator

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[quote=2879]TJ and Averno, I've been on probiotics quite a bit throughout my journey.  I took a break from them this last year because of the detox.  TJ, it's not just a couple of week break in for me.  I've taken them for years and always had to take and then cut back or get off to detox and cleanse.  Up and down, up and down.  It's always the case for me.  Two weeks is nothing in that process. /quote]Ouch, that is miserable.
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Tuesday, January 22, 2013, 12:28am Report to Moderator Report to Moderator

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I believe that our bodies are more powerful than most people think they are;  that to a great extent, we DO have the power to "think positively and heal from minor ailments" without drugs or supplements. Nor do I see that as being anti-religion. G-d certainly has other tools at His disposal, but He also gave us some healing power for ourselves. Some people use prayer as a way to tap into that "innate healing power".

But some things are just bigger than that. Not all things can be fixed with prayer or "the right mindset". Sometimes G-d wants us to reach out beyond ourselves and ask for help from others. Sometimes this means having to place some faith in a human doctor (because it's something our soul needs- maybe we're too prideful and don't want to accept help?) Sometimes we need to swallow our pride even further and borrow money to pay for medical treatment. Sometimes G-d wants us to be sick in bed so we have to ask for help, or He wants us to be just sick enough to sit at a computer all day helping people all over the world (which we couldn't do if we were bedridden and we wouldn't do if we were fully healthy and outside doing "stuff".)

Whatever G-d's reasons for giving us the specific health challenges that He does, the fact remains that many of us need actual, physical help from doctors, medicines, supplements, etc in order for us to heal. A positive mindset may make us happier people while we're sick, and it might reduce some symptoms, but it's naive to think that "positive attitude" can heal everything.

It could be that "Americans" are too sick (from living in a polluted world, eating GMO foods, etc) can't heal ourselves with "positive thinking" but people at other times and places (with a less polluted world) that might have been possible.


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


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JJR
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I don't disagree with you at all Ruthie. I think it is very well put.  

My quandry now is to figure out if I need to see a different doctor.  At least for the lymes.  I like my Doctor in many ways.  But for some reason I feel like something is missing with this.  I do think it might be wise to go to the ND I used to and see what he says.  I just feel like I'm at an impasse.  


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, January 22, 2013, 7:40pm Report to Moderator Report to Moderator

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I agree, JJ, that perhaps it's time to move on to a different ND. Many (most?) doctors, including NDs, have their own beliefs that they will press, even if it's not best for everyone.  

I do agree that America is toxic.  BUT we have a distinct advantage by being on the BTD.


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

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Tuesday, January 22, 2013, 8:16pm Report to Moderator Report to Moderator

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JJ,
Follow your instincts.  I have been seeing a mix of traditional, holistic/ND, Acupuncturist over the past 10 years and I find they have all helped in different ways.  
I am curious what type of probiotics you have done?  I do use Dr. D'Adamo's but I've also used others including Dr. Ohira's which are stronger.

Lin


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Thank you both.  I think I need to view each doctor like another tool in the kit.  Because I don't think we'll stop going to or using the current one, but I think for my particular situation, something more feels needed.

Let me think of what I've used over the last few years lin:

AB probiotic, healthy start by....  I forget who, primal defense by that Jordan Rubin's company, some cultured cod liver oil, manuke honey which I think is fermented, and lots of cultured veggies I made myself, using Donna Gate's culture starters.  All of which I think helped my guts.  But definitely had to take a little at a time and then stop from detox symptoms.  The main symptoms are headaches, high heart rate and I feel like I have a horrible sunburn.  Like it goes down into my whole body.  Basically, inflammation I guess.  I always would say to my wife, MY skin is on FIRE!!!!

I guess my next step is to probably set up an appointment with my old ND.  Ch ch ch changes....


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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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