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A thread to discuss lyme disease*  This thread currently has 175,821 views. Print Print Thread
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Goldie
Thursday, December 1, 2011, 3:02pm Report to Moderator Report to Moderator

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Sam Dan
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Ruthygirl, I work with microorganisms.. many times several will come to the fore front, some times Lyme is included, other times not but the reason I respond is that there are hundreds of such names... would they all mean that one might have this or that.. yes and no.. only further tests would prove it out...  With LYME I think it comes down to symptoms first and test second and follow up third.. I hope no one new has it.. stay out of the 'out of doors'.  


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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JJR
Thursday, December 1, 2011, 5:05pm Report to Moderator Report to Moderator

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Kyosha Nim
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I think teasel might address parasites and junk in general.  Just as garlic or something like that.  I don't think it's necessarily designed to go to a specific target.  I could be wrong though.


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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nowishow
Thursday, December 1, 2011, 9:16pm Report to Moderator Report to Moderator

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Quoted from ruthiegirl
So would a herxing response from Teasel mean that I do in fact have lyme, and "no reaction" would indicate that I don't have it?


Maybe but not definitely, is my opinion. But that's why I thought you might want to try it. That is one of the ways my doctor confirmed that I have Babesia. I show a strong herx response to two different Babesia remedies so that makes a strong case for me having Babesia.



"Anxiety is the gap between now and then"

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Kim
Thursday, December 1, 2011, 10:19pm Report to Moderator Report to Moderator

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Goldie, when Lyme doctors hit Lyme bacteria with antibiotics they usually use 3-4 different types of antibiotics at the same time and alternate them with another antibiotic that is a cyst buster.  

Lyme evades antibiotics by taking on different forms.  It actually alters it's DNA.  The different antibiotics at higher strengths get all the Lyme forms.  Also pulsing, gives the immune system time to wake up and start working while giving the body time off the antibiotics to prevent any resistance.

There is no one process that is totally successful, but of the people I know who got well and stayed that way, usually used either or antibiotics, homeopathics and either rife machines, bionic 880 or the PE1.  
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spinnakertech
Thursday, December 1, 2011, 10:35pm Report to Moderator Report to Moderator
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Quoted from Kim
Lyme evades antibiotics by taking on different forms.  It actually alters it's DNA.  The different antibiotics at higher strengths get all the Lyme forms.  Also pulsing, gives the immune system time to wake up and start working while giving the body time off the antibiotics to prevent any resistance.  


Kim is exactly right.  Lyme Disease spends much of its time as a spirochete, which is a spiral bacteria, like a corkscrew.  It uses its corkscrew shape to quickly get out of the bloodstream and drill through blood vessels into organs and basically any part of the body that it wants to invade.  When the spirochete form is threatened, the Lyme bacteria can straighten itself out like a worm.  When the worm form is attacked, the Lyme bacteria can form itself into a cyst, in which it creates a strong outer shell around its core.

Some antibiotics work against the spirochete form, some against the worm form, and some against the cysts.  That is one reason why the best Lyme doctors use different types of antibiotics to attack the different forms of Lyme Disease.

And, as Kim said, pulsing is very important to train the immune system, which has been too overloaded and too confused for too long, to finally start recognizing the enemy and start fighting against it.  Pulsing does this because the antibiotics expose the enemy and when the antibiotics are pulsed off, the immune system then starts to recognize the enemy and can start fighting it.


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spinnakertech
Thursday, December 1, 2011, 11:19pm Report to Moderator Report to Moderator
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I just had a follow-up appointment with Dr. Jemsek yesterday and I wanted to report some great progress.  In June, I was finally diagnosed (after 10 years with the disease) with Lyme Disease, Babesia, Bartonella, Mycoplasma, and several viruses including Epstein Barr virus.  I started my IV treatment with Dr. Jemsek in July.

I have been on various pulsed IV antibiotics (focusing, at different times, on Lyme Disease, Babesia, and Bartonella) and several oral medications (including anti-malarials for Babesia) for five months now.  In addition, have been on a cyst buster (Flagyl) during the entire treatment program.  And recently Dr. Jemsek added a biofilm scrubber into my program, which will continue now through the rest of my program.  The biofilm scrubber has released even more hiding bugs that are being attacked and eradicated by the antibiotics.

Yesterday, Dr. Jemsek reported that I was doing very well and was a little ahead of schedule.  And the best news of all was that he said I have killed off most of the Babesia bugs and finally got the Babesia under control!!!  Most LLMDs agree that Babesia is the toughest bug to eradicate and that patients with Lyme Disease and co-infections will not get better without dealing with Babesia early on.

Dr. Jemsek said that my immune system is getting stronger and is starting to take a more active role in the battle against the bugs.  He also estimated that I only need two more treatment cycles and that I should be able to finish up my IV treatments by mid-January!!  I'll be on orals after that just a few times each month--a cyst buster, a biofilm scrubber, and one antibiotic--as a maintenance program and those will end after a few months.

I feel like I finally turned a corner in November.  I feel SO MUCH better than I did before I started treament.  Dozens of my previous symptoms are gone, I have so much more energy, and I now only need 8-9 hours sleep each night to feel completely rested (as compared to the 10-11 hours sleep I needed earlier this year).  I've also lost about 10 pounds since July, mainly because Babesia messes up one's metabolism and causes weight gain, which it did for me for many years.  I've got a much better metabolism now and with the increased energy, I am so much more healthy.

So there is hope out there.  Patients need to work closely with their LLMDs to find the best treatment program for them.  But the experts are out there and in my opinion their protocols work!
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JJR
Thursday, December 1, 2011, 11:41pm Report to Moderator Report to Moderator

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Gaining weight has not been my problem.  But I think that's more of a mental thing with me and food.  I started viewing food as the enemy and wasn't eating enough.  My Pastor brought up an issue that was so timely for me.  He said I need to eat 2k calories a day or more in order to not be messed up.  If I'm less, I'm going the have problems.  So, I started tracking it using this pretty good online calculator at http://www.everdayhealth.com.  And the first day I did it I was only at 1157 calories.  So, I've been eating as much as I can ever since.  And it seems to be helping my energy levels.  I was starving myself.  

I think it's also helping my anxiety not be as bad.  It's not the only answer for me, but it seems to be helping and my doctor wants me to get stronger before we really go after the lyme and coinfections.  They use something called Transfer Factors.  So, hopefully I'm getting stronger.  I'm at least not losing weight and I've hit just over 2000 calories a day a couple of days.  It took me a while.  I want to get to 2250 or so.  Or in the neighborhood.  I'm not really sure where I should stop, I'm so underweight.  But I'm sure my body will let me know.  


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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ABJoe
Friday, December 2, 2011, 12:02am Report to Moderator Report to Moderator

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I am glad that you got that figured out.  Healing does take much energy.  I have at times also not eaten enough, but I have to keep in mind that I need it to get better.  

I'm not going to say that everything will magically be a bed of roses, but it will get better.


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spinnakertech
Friday, December 2, 2011, 12:07am Report to Moderator Report to Moderator
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JJR, I've heard that Babesia makes people gain weight and Bartonella makes people lose weight.  Who knows what happens when you have both??  I had both, but the Babesia showed up stronger on my blood work, so perhaps that's why I gained weight with Lyme and co-infections.

Best of Luck!
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nowishow
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JJR - Anorexia can be a sign of Babesia as well as weight gain. You might want to check out this link http://www.personalconsult.com/posts/babesia-checklist.html Dr Schaller is the leading expert on Babesia.


"Anxiety is the gap between now and then"

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JJR
Friday, December 2, 2011, 1:06am Report to Moderator Report to Moderator

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Kyosha Nim
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Interesting.  I used to weight 165.  Now I weigh 115.  I'm 5'7".  I am an ectomorph, so 165 was overweight.  At that time I used to exercise and I couldn't lose weight.  But I had a terrible diet.  But I think I might have had lymes then.  

My goal is 140.  Hopefully eating more will help.  It's at least a start.  Because I certainly wasn't eating enough.  


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
Friday, December 2, 2011, 3:39pm Report to Moderator Report to Moderator

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On Wednesday I started taking the Astragalus and Cordyceps sinensis supps I purchased.  They are already working!  I had a sore throat and sinus congestion by the time I went to bed last night.  I feel like I have a cold.  That means they are working, right?  Unless I actually caught the cold?
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JJR
Friday, December 2, 2011, 3:57pm Report to Moderator Report to Moderator

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Kyosha Nim
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Well, it could be either or.  I've taken astragalus in the past though and it's supposed to be an immune booster.  


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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Goldie
Friday, December 2, 2011, 4:23pm Report to Moderator Report to Moderator

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KIM... and others... I found that a cold gelpack rolled up in a thin sock makes for a good neckroll for comfort, the cold is nicer then ice.. try it.. it stays soft and molds to the neck.. about 7.- at the chiro..  


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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spinnakertech
Friday, December 2, 2011, 5:49pm Report to Moderator Report to Moderator
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Quoted from Goldie
KIM... and others... I found that a cold gelpack rolled up in a thin sock makes for a good neckroll for comfort, the cold is nicer then ice.. try it.. it stays soft and molds to the neck.. about 7.- at the chiro..  


Just a note:  people with suspected Lyme Disease or co-infections should not use cold to reduce inflammation.  Heat should be used instead to relax the area and reduce pain.  The reason is that the bugs like cold and not heat.  They can reproduce in cold but often die off in heat.

Traditional anti-inflammatory remedies don't work with Lyme patients--it often makes them worse.  Diet is a good way to control inflammation--stay away from sugar and the nightshade vegetables.  And take Bromelain or other natural anti-inflammatories.
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JJR
Friday, December 2, 2011, 7:09pm Report to Moderator Report to Moderator

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I've been eating pineapple on a regular basis.  I think it helps.  


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, December 2, 2011, 9:11pm Report to Moderator Report to Moderator

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Quoted from 11080


Just a note:  people with suspected Lyme Disease or co-infections should not use cold to reduce inflammation.  Heat should be used instead to relax the area and reduce pain.  The reason is that the bugs like cold and not heat.  They can reproduce in cold but often die off in heat.

Traditional anti-inflammatory remedies don't work with Lyme patients--it often makes them worse.  Diet is a good way to control inflammation--stay away from sugar and the nightshade vegetables.  And take Bromelain or other natural anti-inflammatories.


Wish I could do the heat.  I have herniated discs with spinal cord involvement so I have to use ice to bring down the swelling.  And, the neurologist said that with this type of injury, heat increases the inflammation.  Dr. J knows I am using ice.
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TJ
Saturday, December 3, 2011, 5:24am Report to Moderator Report to Moderator

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Quoted from TJ
On Wednesday I started taking the Astragalus and Cordyceps sinensis supps I purchased.  They are already working!  I had a sore throat and sinus congestion by the time I went to bed last night.  I feel like I have a cold.  That means they are working, right?  Unless I actually caught the cold?
I talked to my brother Josh today, and he caught the cold.  My little sister has it, too.  Looks like it's not (just) the supplements.
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JJR
Saturday, December 3, 2011, 5:52am Report to Moderator Report to Moderator

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Well, it should help fight off your cold.


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, December 3, 2011, 7:33am Report to Moderator Report to Moderator

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Yay, I finally have a fever!  It's a good sign.  I can't remember the last time I had one.  My immune system is awake at last.
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TJ
Saturday, December 3, 2011, 7:36am Report to Moderator Report to Moderator

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I was about say I spoke too soon.  I could keep my eyes open by 11 pm, but I didn't sleep and was back up at midnight.
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Goldie
Saturday, December 3, 2011, 8:24am Report to Moderator Report to Moderator

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Yes I think.. Getting a real case of temp is a good thing, but one seldom gets it..  If I ever have temp I go to the hospital.. yet I think a lot of illnesses could be fixed with high temps if one survived it..

I hope you feel better soon, go to bed, read a book, stay warm and drink..


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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Goldie
Saturday, December 3, 2011, 8:25am Report to Moderator Report to Moderator

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Just a note:  people with suspected Lyme Disease or co-infections should not use cold to reduce inflammation.  Heat should be used instead to relax the area and reduce pain.  The reason is that the bugs like cold and not heat.  They can reproduce in cold but often die off in heat.

Traditional anti-inflammatory remedies don't work with Lyme patients--it often makes them worse.  Diet is a good way to control inflammation--stay away from sugar and the nightshade vegetables.  And take Bromelain or other natural anti-inflammatories.


awesome post


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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Kim
Saturday, December 3, 2011, 3:06pm Report to Moderator Report to Moderator

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Quoted from Goldie
Just a note:  people with suspected Lyme Disease or co-infections should not use cold to reduce inflammation.  Heat should be used instead to relax the area and reduce pain.  The reason is that the bugs like cold and not heat.  They can reproduce in cold but often die off in heat.

Traditional anti-inflammatory remedies don't work with Lyme patients--it often makes them worse.  Diet is a good way to control inflammation--stay away from sugar and the nightshade vegetables.  And take Bromelain or other natural anti-inflammatories.


awesome post


I emailed my doctor about this question of ice vs heat with someone with lyme disease.

The quoted email:

Question in email "ice on the  injury with someone who has Lyme disease makes the bugs replicate faster and you should use heat".

This is not true and I can't imagine who came up with this and why!"

end of doctor's quote,
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Ribbit
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Actually, it makes total sense with what I've experienced.  I think Lyme brings the body's temperature down.  Don't we all have underactive thyroid?  I feel *horrible* when I'm cold.  I hate winter.  I used to be afraid of it.  Now I wear wool sweaters and wool socks and I build fires in the fireplace.  My body shuts down when I'm cold.  In the rare times when I can actually run a fever (not counting the times last year when I was running a low-grade fever just about every afternoon), I feel fantastic afterwords.  I think getting a fever is one of the best things for me.  For 10 years now my husband has been telling me the reason I feel so good after a fever is because it's killing something off.  We believed it was Candida, but now I think it's Lyme bacteria/viruses.

I don't want to talk about the disability stuff anymore.  I got the info I need from someone on the Facebook group I moderate and she knows exactly what's going on--she's in an identical situation to mine.  Yes, Ruth, I was seeking employment because we face loosing the house if I don't work.  But I can't work, and my "bad days" are more than just twice a month headaches.  Anyway, as soon as we can, we will pursue the next step.  First we have to wait till all the tests come back from the LLMD, and then I will see the neurologist at Emory I saw 1 1/2 years ago.  He'll be the one I'm most likely to get help from.  No, Goldie, a doctor is not a doctor is not a doctor.  It matters very much who I see.  Because I have an invisible illness and I do not look sick (unless I'm having a skin breakout like I am now--then I look like I've been stung by 100 bees).  I have to be very particular about who I see.  And nobody should welcome CPS into their homes.  They cannot come without a substantiated report.  All they can do is make noise and talk to your lawyer.  You do not have to let them into your home.  This is America.


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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