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A thread to discuss lyme disease*  This thread currently has 143,145 views. Print Print Thread
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JJR
Tuesday, March 6, 2012, 5:43pm Report to Moderator Report to Moderator

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Kyosha Nim
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Having a bad morning.  One of those when too many things go wrong while trying to eat and I stress out.  It's not an excuse, because I'm dealing with germaphobic issues.  But I sometimes feel like around the full moon things get more "hairy" in my psyche.  And things just seem to tend to go wrong easier.  At least in my head they do.


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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ruthiegirl
Tuesday, March 6, 2012, 5:45pm Report to Moderator Report to Moderator

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Kyosha Nim
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I find the full moon a stressful time too, but that may be because that's currently about the time my period is due. It's really hard to separate the lunar cycles from my own- something you clearly don't have to worry about.


Ruth, Single Mother to 19yo   O- Leah (in Israel for the school year), 17yo O- Hannah, and  12yo B+ Jack


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Victoria
Wednesday, March 7, 2012, 12:46am Report to Moderator Report to Moderator

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Sun Beh Nim
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Quoted from Kim
Some people put the peppermint on their tummy and get the same benefits


This is a great idea.  Thanks!



Normal day, let me be aware of the treasure you are.
Let me not pass you by in quest
of some rare and perfect tomorrow.
~Mary Jean Irion
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JJR
Wednesday, March 7, 2012, 1:06am Report to Moderator Report to Moderator

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Kyosha Nim
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Yeah, Ruthie, I don't have to worry about that.  hehehehe

I used to rub peppermint oil on my liver and kidneys.  


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
Wednesday, March 7, 2012, 4:00pm Report to Moderator Report to Moderator

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Kyosha Nim
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I'm off to see the doctor today!  My church is going to pay for my care.  The guy I'm seeing is not an LLMD, but he does practice integrative medicine.  I believe he'll be more open-minded toward the possibility of Lyme disease than your typical family practice doctors.  It is good to know that someone else will finally be involved in overcoming this challenge.
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Spring
Wednesday, March 7, 2012, 4:31pm Report to Moderator Report to Moderator

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Quoted from TJ
I'm off to see the doctor today!  My church is going to pay for my care.  The guy I'm seeing is not an LLMD, but he does practice integrative medicine.  I believe he'll be more open-minded toward the possibility of Lyme disease than your typical family practice doctors.  It is good to know that someone else will finally be involved in overcoming this challenge.


I am so glad you have others helping you now, TJ! I hope for the very best outcome!!


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Chloe
Wednesday, March 7, 2012, 4:51pm Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from Spring


I am so glad you have others helping you now, TJ! I hope for the very best outcome!!


I ditto that!  Good luck TJ.



"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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TJ
Thursday, March 8, 2012, 5:36am Report to Moderator Report to Moderator

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Kyosha Nim
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The doctor believes my biggest problem is SIBO, and because of that my digestive system is damaged and I can't get the nutrition I need.  I think this is a good place to start.  I mentioned Lyme disease, and he was a bit hesitant about that, basically saying that the treatment for Lyme is antibiotics, and that's the last thing I need with my gut like it is.  He has advised me to take some huge doses of probiotics, along with Myer's cocktail injections, a powdered fiber and protein supplement called Constant Health, and several others.  He has ordered testing for Lyme disease, Celiac disease, vitamin D, ferritin, hemoglobin, and homocysteine.  I gather that, if I have Lyme disease, he wants to treat it by getting my gut and immune system healthy.

All that he said makes sense to me except for his dietary recommendations, of course.  He wants me on a Mediterranean diet, starting with an elimination stage and reintroducing foods every week.  I will stick with my SWAMI, thank you, but I'm game for the rest of it.  His name is Dr. Hugo Rodier, and he's written a few books and designed some of his own supplements.  On the whole, I feel like I'm in good hands.  I have hope again for getting well.

My treatment protocol isn't focused on Lyme disease, so I probably won't be posting updates on this thread.
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Victoria
Thursday, March 8, 2012, 5:54am Report to Moderator Report to Moderator

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You can't go wrong by working to heal your gut.  And a major percentage of our immune strength originates there anyway.  I don't remember what you're currently taking that might benefit your intestines, but take a look at Dr. D's Intestinal Health Protocol:

BLOOD GROUP B

    Deflect B (ABO-specific lectin-blocking formula): 2 capsules, 2-3 times daily between meals
    Polyflora B (ABO-specific Probiotic): 2 capsules, twice daily
    Intrinsa: 2 capsules, twice daily
    Magnesium: 350 mg, 1 capsule, twice daily
    Rice-derived tocotrienols: 50 mg, 1-2 capsules daily
    Elecampane (Inula helenium): 500 mg, 1 capsule, 2-3 times daily with meals
    Chlorophyll Liquid: 1 teaspoon, twice daily

GENERAL RECOMMENDATIONS USABLE BY ALL GROUPS

    ARA6 (Larch arabinogalactan): 1 tablespoon, 1-2 times daily in juice or water
    Ghee (clarified butter): 1 teaspoon, twice daily



Normal day, let me be aware of the treasure you are.
Let me not pass you by in quest
of some rare and perfect tomorrow.
~Mary Jean Irion
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JJR
Thursday, March 8, 2012, 6:10am Report to Moderator Report to Moderator

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Kyosha Nim
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Yeah, heal the gut.  I'm pretty sure that the work I've done over the last few years of healing my gut has helped quite a bit.  I think I'd be in a world of hurt if I didn't do those things.  Like take probiotics, cultured foods, homeopaths to kill h.pylori and crypto.  Manuke honey. Anti candida shakes with psyllium powder and capryl oil.  ON and on.  And I could tell a lot of those things worked and helped.  

When your body is ready to deal with any underlying disease like Lymes, if you have it, it will all come together.  But like Vicky said, no problem working on the gut.  

I'm not sure the mediteranean diet would be good for a B.  It's chicken and fish and yoghurt and veggies.  There's a lot of good things about it, but red meat is only a once in a while type thing.  I think you're better off getting red meat regularly.  Especially some lamb if you can swing it.

It's great news that you are getting help.  Great news.  As far as I'm concerned, you could post in here.  But I suppose starting another thread might be appropriate also.  But it sounds like he wants to test you for lymes.  So it relates.  Did he say where he's sending the test.  Because from what I hear, that one in palo alto CA is the only one to send it to that knows what they're doing.  Igenex is it?  I think it's somewhere in this thread.    


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, March 8, 2012, 7:49pm Report to Moderator Report to Moderator

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Speaking of testing. Here's something from a lyme forum I belong to (Lyme Aid Buhner).

Quoted Text
i just took the NEW culture test developed by Dr. Burrascano +  
Advanced Labs (Philadelphia).
it's touted to become the new "gold" standard in testing for lyme,  
because, if i get this right, from your own blood it grows the  
spirochete, and then they test antibodies to that.

i had not tested positive for lyme since early '09 (tested for it 3x)  
altho a number of bands were positive.
with this, i test negative for short term exposure (meaning i've not  
been bitten recently), and positive for long-term exposure (meaning i  
have chronic lyme disease).

it costs $595 or so, and can take awhile to get results as the  
spirochete is a slow-growing bacteria (i took my test 12-6-11 + just  
got the results back last week!).
you get your blood drawn at your LLMD + they send it off to Advanced  
Labs.


here is Burrascano's press release last September:
http://www.researchednutritionals.com/information.cfm?ID=255

Advanced Lab's website:
http://www.advanced-lab.com/


"Anxiety is the gap between now and then"

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nowishow
Thursday, March 8, 2012, 7:51pm Report to Moderator Report to Moderator

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Here's more info

Quoted Text
http://lymedisease.org/news/lymepolicywonk/811.html


LYMEPOLICYWONK: New Lyme Disease Culture Test Could be Game Changer

Advanced Laboratory Services Inc. (ALSI) has announced a new culture test for
Lyme disease. It is commercially available in all states except California, New
York and Florida, which have individual state licensing requirements that must
be met before the test can be offered. Direct detection of bacteria through
culture is considered the �gold standard� for diagnosis, but this method has not
been commercially available for Lyme disease using previous culture methods. The
new test is based on research conducted by Dr. Eva Sapi and colleagues, which
CALDA helped fund. Results of the research published earlier this year
demonstrated the improved culture method for Borrelia burgdorferi, the agent of
Lyme disease, and the technique has recently been corroborated using human blood
samples. Larger confirmatory studies of the test are now being pursued. Dr.
Joseph Burrascano, a pioneer in the treatment of Lyme disease, consulted with
ALSI to help make the test commercially available. A sensitive high-quality
culture test would not only permit patients to be accurately diagnosed, but
would lay to rest much of the controversy surrounding Lyme disease.

One of the primary causes of the Lyme controversy is the lack of a �gold
standard� diagnostic test to determine who has the disease, who has persisting
disease, and who has cleared the infection.  Currently available Lyme tests rely
on indirect methods of detecting the disease using antibodies produced by the
patient. The sensitivity of most of these commercially available antibody tests
has been so low that they may miss one out of every two people with the disease.

The new test identifies Borrelia burgdorferi using histology and growth
characteristics in conjunction with fluorescent immunostaining.  Positive
results can be further confirmed using standard molecular biology methods (PCR)
based on DNA sequencing.

The testing is now available for use in all states except California, New York,
and Florida, which require a higher level of lab certification for testing.
Physicians can obtain lab test kits from ALSI in Pennsylvania.  Contact
information about the lab can be obtained from their website.

Those seeking further information may wish to read:

The Advanced Laboratory Services press release.

Dr. Burrascano�s informal release regarding the testing.

My blog post announcing the in vitro culture results.

The research study is also available open access (free).  Sapi E, Kaur N,
Anyanwu S, Luecke DF, Datar A, Patel S, et al.Evaluation of in-vitro antibiotic
susceptibility of different morphological forms of Borrelia burgdorferi. Infect
Drug Resist 2011;4:97-113.


"Anxiety is the gap between now and then"

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TJ
Friday, March 9, 2012, 12:23am Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from JJR
Did he say where he's sending the test.  Because from what I hear, that one in palo alto CA is the only one to send it to that knows what they're doing.  Igenex is it?  I think it's somewhere in this thread.
There is a Quest diagnostics lab in-house at his practice.  I seriously doubt that they will show me positive for Lyme since these are only the standard Lyme titers.  Still, this is progress.  I'll let you all know when I have some results from these tests.

In the meantime, do any of you know if activated charcoal could counteract the negative reaction I get when taking probiotics?  Any other solutions?
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Drea
Friday, March 9, 2012, 12:25am Report to Moderator Report to Moderator

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Quoted from TJ

My treatment protocol isn't focused on Lyme disease, so I probably won't be posting updates on this thread.


I hope you'll consider posting on a new thread because we can all learn from your journey.


Let go of resistance; feel appreciation for what is, and eagerness for what is coming.
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TJ
Friday, March 9, 2012, 1:51am Report to Moderator Report to Moderator

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Kyosha Nim
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I sure will!  I want to document the experience, share it with y'all, and get feedback.
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Spring
Friday, March 9, 2012, 4:15am Report to Moderator Report to Moderator

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Quoted from TJ
I sure will!  I want to document the experience, share it with y'all, and get feedback.


Great!


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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TJ
Monday, March 12, 2012, 3:23am Report to Moderator Report to Moderator

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Kyosha Nim
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nowishow
Friday, March 16, 2012, 11:21pm Report to Moderator Report to Moderator

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Here are a few links that you might find interesting. They were written by my Doctor.

About Babesia
http://www.wayneanderson.com/pages/diseases/babesia

About Bartonella
http://www.wayneanderson.com/pages/diseases/bartonella

Chronic Mold Infections and Lyme Disease
http://www.wayneanderson.com/pages/diseases/afng


"Anxiety is the gap between now and then"

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JJR
Sunday, March 18, 2012, 5:07am Report to Moderator Report to Moderator

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Kyosha Nim
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Oh man.  I was just coming on here to whine about my last two days and your posts might have given me some insight as to why.  

I've been so stressed about stupid things the last couple of days.  OCD big time.  I have a hard time letting things go.  And then I can't remember if I washed my hands 5 minutes prior.  I'll start preparing food and be like, DID I WASH MY HANDS????  I did it tonight while making my oatmeal. I had my son watch me because the first time I rewashed everything because I couldn't remember.  So then I had him watch and I'll be darned if I didn't forget that I washed my hands again.  But since he was watching, he could tell me I did. I was like, What the heck!!!  It was like my memory just blanks it out.  And it's almost like it does it on purpose to stress me out about making food!!!!

But, it could be Babesia.  I don't know. I got new glasses this week and it's been taking a while to get used to the prescription.  That was really playing with my head.  It just seemed like so many things have gone wrong in the last couple days.  I bawled I get so overwhelmed with not being able to remember and let things go about it and just relax.  I had a meltdown today for sure.  And OH, the weather got all of a sudden a lot warmer.  It went from like 45 one day to 80 the next.  Then dipped down to 57 and now 75 today.  Roller coaster.  

I have been getting a pvc here and there, maybe a tiny bit more than I'd been used to.  My wife is sick with a terrible cold and possible fever.  I don't have any of those symptoms, but I'm sure fighting the crazy in the head syndrome.  It's very disheartening.  

I guess things could be worse though.  Any prayers are welcomed.  It's not been easy.  Anyone else having a bad time that I can pray 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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Goldie
Tuesday, March 20, 2012, 12:03pm Report to Moderator Report to Moderator

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Richard Ostfeld, Ph.D. Disease Ecologist with the Cary Institute of Ecosystem Studie... wrote a fab book on the life cycle of ticks.. 3 years .... and this year will be Bad..


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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ruthiegirl
Tuesday, March 20, 2012, 12:58pm Report to Moderator Report to Moderator

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Quoted from JJR
I guess things could be worse though.  Any prayers are welcomed.  It's not been easy.  Anyone else having a bad time that I can pray for you?


I could use prayers too. I've just been having a rough time of things lately. I'm tired and moving slowly and my brain is all foggy. I don't really know what the underlying problem is; I'm just sick and tired of being sick and tired.


Ruth, Single Mother to 19yo   O- Leah (in Israel for the school year), 17yo O- Hannah, and  12yo B+ Jack


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Spring
Tuesday, March 20, 2012, 4:29pm Report to Moderator Report to Moderator

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Quoted from ruthiegirl


I could use prayers too. I've just been having a rough time of things lately. I'm tired and moving slowly and my brain is all foggy. I don't really know what the underlying problem is; I'm just sick and tired of being sick and tired.


Ruthie, it takes me three days to "get over" eating only one food that I shouldn't, and I don't have any known illnesses. I don't eat avoids but some foods that I'm allowed simply don't agree with me for now. Chicken is a neutral for me, but it makes me feel tired to the bone for three days if I eat it. I have only had it once in the last several months because of that. I hate to get into situations like you described, and especially all in the same day!!     Thankfully, all our friends understand that I must not eat certain things because they will throw me for a loop. I decided a long time ago that people who don't understand won't suffer nearly as bad from me not eating something they are serving as I will if I try to spare their feelings at the expense of three miserable days out of my life!!! I can't help it if they want to eat foods that NO ONE should be eating!! I don't draw attention anymore than I can help to what I am eating or not eating. Maybe a little visit to the bathroom would make people not notice what you are eating or not eating!! Sometimes things call for drastic measures! Even loading up a napkin can hide some things when you are simply standing around until you can get to the nearest garbage can! I always have something in my purse that I can pop into my mouth until I can get home. It does seem that there should be some way that your husband could help. The first thing he needs to do since he isn't working is to stop smoking! But, of course, that is a whole lot easier said than done.....


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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JJR
Tuesday, March 20, 2012, 5:01pm Report to Moderator Report to Moderator

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I'll say a prayer for you ruthie.  Hang in there!


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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ruthiegirl
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Thing is, this family has a child with multiple severe allergies and I thought they DID understand!

Also, nobody was forcing me to eat anything. Everything was buffet style. The problem was that I was there the entire day and there weren't any 100% compliant options for me, and I needed to eat!


Ruth, Single Mother to 19yo   O- Leah (in Israel for the school year), 17yo O- Hannah, and  12yo B+ Jack


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JJR
Tuesday, March 20, 2012, 7:19pm Report to Moderator Report to Moderator

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Kyosha Nim
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It stinks that some of us are so sensitive to certain foods.  And it also stinks that the rest of the world eats so, well....  interestingly.  I'm hoping someday to be able to eat like everyone else, if only for a meal and not have to pay dearly for it.  Don't know if that will ever happen or not, but it would make things so much easier.  But, I guess we're given this challenge for a reason.  Maybe to show others that food CAN affect you, and you can maybe heal some things by what you eat.


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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