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A thread to discuss lyme disease*  This thread currently has 151,458 views. Print Print Thread
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Goldie
Friday, December 9, 2011, 4:39pm Report to Moderator Report to Moderator

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Sam Dan
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Yes that moment when we can surrender - to life - as it is, can be peace.  A way of living the moments.  A worthy discovery.  and once done, it make life less expecting, less hassled, less competitive.

All that in my life yes, but Ribbit (tip my hat) and others have so much more to consider.  Children and adults who depend on us.. I have near none left and that is freeing. It makes it easier... and yet I expect to have a long life which is a burden in some ways.  Like: I did all my suffering while young and feeling well now, and having little do do with it.. not complaining just stating facts..  I used to wish to make a difference, today I accept that I will only do so in very small ways.. knowing 'that' is also taking a burden off, but it does leave one wondering what will come alone.  

    


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
Friday, December 9, 2011, 5:55pm Report to Moderator Report to Moderator

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Yeah, and living for the day at hand.  I used to always been so concerned about how I would feel when this was coming up or that was coming up.  I'm trying to focus on one day, this one.  And doing what I can.  I have been a lot more peaceful internally also.  Still working through some anxiety issues with germs, but it's working.  My pastor has helped me a lot with a Bible study and his counseling.  And I'm sure eating more has helped the old noggin.  


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
Friday, December 9, 2011, 6:03pm Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from Ribbit


That's the thing.  It wasn't scary.  It was okay.


For YOU in that moment it was OK. For those who care about you, it's scary to know about it after the fact, thinking we could have lost you. That the time you were in NY and my son was sick so I told you not to come, might have been my only chance to meet you in person.


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


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Chloe
Friday, December 9, 2011, 6:26pm Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from ruthiegirl


For YOU in that moment it was OK. For those who care about you, it's scary to know about it after the fact, thinking we could have lost you.


I agree...but Ribbit,

Am I right or wrong in assuming that the kids were home alone and totally on their own for 3 1/2 hours while you slept?  How old is the oldest child and how responsible could that child be if
there were an emergency?

If this is true and the kids were alone while you didn't care if you died in your sleep, then from that perspective, it's rather terrifying for me to even read this! You were in a complete state
of disconnect and delusion and I find it beyond just scary.  It's so terrifying that I'd want to suggest you let a neighbor know or someone know if you're going to go to sleep when
you're in charge of the kids........or that you make some kind of safe arrangements for your children before ever doing this again.  I can't tell, Ribbit, if you're sending
out an SOS signal to us and nobody is really tuning into your situation or saying the right things
so you get the right kind of help.....or was this just one strange afternoon?

It sounds like you could use some help at home so you can get adequate rest.  Do you have
any family nearby?  Anyone you could hire?  A high school kid, even for a few hours so you
could take a planned nap?



"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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JJR
Saturday, December 10, 2011, 12:20am Report to Moderator Report to Moderator

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Her oldest is old enough and smart enough to handle it.  There's a lot more I could say but I'm not sure if she'd want me to, so I'll just leave it at that.  I'm sure they were fine.  But I can understand your concern.  


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
Saturday, December 10, 2011, 2:46am Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from JJR
Her oldest is old enough and smart enough to handle it.  There's a lot more I could say but I'm not sure if she'd want me to, so I'll just leave it at that.  I'm sure they were fine.  But I can understand your concern.  


Thanks for adding that oldest child is totally capable.  It's a big relief knowing this!  


"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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JJR
Saturday, December 10, 2011, 4:40pm Report to Moderator Report to Moderator

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Kyosha Nim
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No problem!!!!  


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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spinnakertech
Saturday, December 10, 2011, 9:28pm Report to Moderator Report to Moderator
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Quoted from Kim


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,


It's a published fact by LLMDs that the bugs don't like heat and are not as active or able to replicate in heat.  Was it a LLMD who you asked?  And the way you asked the question in your e-mail misses the point.  I wasn't saying that people who need ice because of a herniated disk should not use it.  Just a caution that people with Lyme Disease should understand how temperature affects their disease. I think my comment led to a very productive discussion by many members about temerature and Lyme Disease, so I'm glad I made the comment, even if you felt you had to run to the doctor and misinterpret my point to him.
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Kim
Sunday, December 11, 2011, 1:53am Report to Moderator Report to Moderator

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Quoted from 11080


It's a published fact by LLMDs that the bugs don't like heat and are not as active or able to replicate in heat.  Was it a LLMD who you asked?  And the way you asked the question in your e-mail misses the point.  I wasn't saying that people who need ice because of a herniated disk should not use it.  Just a caution that people with Lyme Disease should understand how temperature affects their disease. I think my comment led to a very productive discussion by many members about temerature and Lyme Disease, so I'm glad I made the comment, even if you felt you had to run to the doctor and misinterpret my point to him.


I just asked the question of the doctor to make sure I wasn't causing further damage as far as the lyme disease goes by using ice on my neck.  The email is below.  

Here is the response from Dr. J's office.

Hi Kim,
I am of an opposite view to your friend’s. In a study done in 1995 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC173648/pdf/634535.pdf ), it was revealed that the spirochete replicated and migrated faster at 35 0 C as compared to 230C. This makes sense because the spirochete replicates in the human blood which is closer to 350C than 230C. (Most people have a normal temperature of 370C).
So, I don’t think cold temperatures will increase the replicative abilities of the spirochete. Also, cold padding is encouraged in the treatment of all forms of arthritis including Lyme arthritis. Cold padding numbs the inflamed nerves and this reduces pain, while hot padding relaxes the tension in the tendons and this also reduces pain.  

End of email from Dr. J's office.
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TJ
Sunday, December 11, 2011, 4:29am Report to Moderator Report to Moderator

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Now y'all play nice, ok?
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Ribbit
Sunday, December 11, 2011, 2:28pm Report to Moderator Report to Moderator

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All I know is that when I'm cold, I'm miserable.  When I'm not, I'm miserable.  When I'm luke-warm, I'm comfortable.  But when I'm hot, I'm less miserable than when I'm cold.  Before I started taking vitamin D, I dreaded the beginning of every winter.  I moped and dragged myself around.  I wear layers upon layers especially when I go anywhere because my body's reaction to temperature change is extreme. This early menopause thing isn't helping matters any.


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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TJ
Sunday, December 11, 2011, 3:09pm Report to Moderator Report to Moderator

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What really annoys me about being cold is that it makes my metabolism slow down even more.  Shouldn't it be picking up the pace to keep me warm???
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JJR
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Are you eating more warming foods now?  That might help.  


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
Monday, December 12, 2011, 12:02am Report to Moderator Report to Moderator

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Yes, stews, meats, grains, etc.

I recently saw a TV on eating disorders.  The episode I watched featured a woman with anorexia and a woman with bulimia.  The anorexic complained of being cold all the time, and her body temp was typically around 96.  To me it looks like another example of a body slowing down to conserve energy.  She was malnourished from not eating enough calories, and therefore her metabolism was slowed.

It's pretty clear to me that I'm somewhat malnourished.  It's also clear that, for me, it's not because I don't eat enough calories.  Those calories just aren't making it to where they "should" be.  I wish I knew how this is related to Lyme.  Does Lyme cause malabsorption in the digestive system?  Does it interfere with the metabolism of food into usable energy, or the use of metabolized food?  Is the immune system drawing away resources to fight the infection leaving too little for other functions?  This last one seems less likely, seeing how the immune system seems so sluggish in fighting off this infection for so many people.
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Chloe
Monday, December 12, 2011, 12:21am Report to Moderator Report to Moderator

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Quoted from TJ
Yes, stews, meats, grains, etc.

I recently saw a TV on eating disorders.  The episode I watched featured a woman with anorexia and a woman with bulimia.  The anorexic complained of being cold all the time, and her body temp was typically around 96.  To me it looks like another example of a body slowing down to conserve energy.  She was malnourished from not eating enough calories, and therefore her metabolism was slowed.

It's pretty clear to me that I'm somewhat malnourished.  It's also clear that, for me, it's not because I don't eat enough calories.  Those calories just aren't making it to where they "should" be.  I wish I knew how this is related to Lyme.  Does Lyme cause malabsorption in the digestive system?  Does it interfere with the metabolism of food into usable energy, or the use of metabolized food?  Is the immune system drawing away resources to fight the infection leaving too little for other functions?  This last one seems less likely, seeing how the immune system seems so sluggish in fighting off this infection for so many people.


I think once you find out you're gluten intolerant, you have to restore the damage that gluten did to your gut when you were eating it. The gluten flattens out the lining of the intestinal tract,
allowing a leaky gut...allowing toxicity to keep traveling all over your body. Given the large percentage of your immune system that IS located in the gut, it stands to reason that the immune system is weakened just by the gluten damage... Combined with Lyme toxicity, it takes a lot of work to get the gut operating properly.  I honestly think it's better to be a grazer when you have gut problems...and especially if your body feels chilled.  Eating is like gas in your car...You can't
drive without putting your foot on the gas pedal.  Eating often keeps the engine in your body
going.  Make sure your mineral intake is high...and that you get plenty of sea salt...Our bodies
thrive in an alkaline environment...Not talking about the nature for some blood types to make
adequate HCL.  I find on days I eat the most vegetables, the better I feel. Easier to do in cold
weather if you make a vegetable soup and eat it a few times a day. Food usually makes me feel
warmer.  I do avoid drinking or eating really cold food in the winter.

Ever try roasting root vegetables?  Yum...parsnips, carrots, onions, beets, squash...Lately I'm
living on a lot of root veggies.

In Chinese medicine, they speak about constitution...Cold, hot, damp, dry.  We usually wind
up unbalanced when we're ill.  Might help to read up on these conditions.  You might find clues
to help balance yourself with foods.


"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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ABJoe
Monday, December 12, 2011, 3:33am Report to Moderator Report to Moderator

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Quoted from TJ
What really annoys me about being cold is that it makes my metabolism slow down even more.  Shouldn't it be picking up the pace to keep me warm???

It sounds like the body isn't able to keep up with the energy needs.  It may be either the thyroid or adrenal systems at fault, or it may be that the gut isn't absorbing enough energy from the food to allow the body adequate energy to drive the metabolism to create the body warmth.

I'm sure there are probably more possibilities, as well.  


RH-, ISTJ
Wonderful Wife = A+ Teacher; Darling Daughter = A- SWAMI Explorer
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C_Sharp
Monday, December 12, 2011, 3:47am Report to Moderator Report to Moderator

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I just wanted to mention Ginger Nash's recent blog on treating Lyme.

http://genotypediet.com/nash/?p=50


MIfHI                            I follow a SWAMI diet.
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JJR
Monday, December 12, 2011, 4:44am Report to Moderator Report to Moderator

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That is a great little write up.  A lot of potency in a few paragraphs.  


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
Monday, December 12, 2011, 5:29am Report to Moderator Report to Moderator

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Quoted from Chloe
I think once you find out you're gluten intolerant, you have to restore the damage that gluten did to your gut when you were eating it.  ...Eating is like gas in your car...You can't drive without putting your foot on the gas pedal.  Eating often keeps the engine in your body going....

Ever try roasting root vegetables?  Yum...parsnips, carrots, onions, beets, squash...Lately I'm living on a lot of root veggies.

In Chinese medicine, they speak about constitution...Cold, hot, damp, dry.  We usually wind up unbalanced when we're ill.  Might help to read up on these conditions.  You might find clues to help balance yourself with foods.
I've been mostly gluten-free since the GTD book came out.  By mostly I mean no gluten grains, and only traces of gluten contamination.  I still haven't healed my gut.  That's why I suspect that the Lyme is keeping my gut from healing.

I eat carrots and occasionally sweet potatoes, but rarely roasted.

I figured there was something like what you said about constitution.  I mentioned that earlier in the thread.

Quoted from ABJoe
It sounds like the body isn't able to keep up with the energy needs.  It may be either the thyroid or adrenal systems at fault, or it may be that the gut isn't absorbing enough energy from the food to allow the body adequate energy to drive the metabolism to create the body warmth.
That sounds about right.  I don't have enough gas to run the engine at full power.

Quoted from C_Sharp
I just wanted to mention Ginger Nash's recent blog on treating Lyme.

http://genotypediet.com/nash/?p=50
Thanks!  Read it.
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ruthiegirl
Monday, December 12, 2011, 3:13pm Report to Moderator Report to Moderator

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Kyosha Nim
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There are also "warming spices" such as ginger and red pepper that "heat up" the metabolism, regardless of the physical temperature of the food. There are also "cooling spices" that you may want to minimize or avoid. There are lots of spices in both categories, so it should be easy enough to find ones that are compliant for your SWAMI and use them in your soups and stews and such.


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


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JJR
Monday, December 12, 2011, 4:59pm Report to Moderator Report to Moderator

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TJ, you said that you're eating enough.  Well, are you sure?  I thought I might have said this all in here but I've had a huge shift in thinking lately because my Pastor made something clear.  If you're not getting enough calories, it's not good.  He said 2000-2500 calories per day.  And then I talked to my doctor about it and what not.  But I hadn't really tracked my calories for a long time when my pastor brought it up.  So I found a free calculator on http://www.everydayhealth.com and started tracking it.  The first day I tracked it, I was only eating 1100 calories.  That's a 1000 less than I should be.  So I got busy.  It is not easy, but it seems to really be helping.  I have more energy lately (praise God) and am now going up in weight instead of down.  I had thought the problem was my guts weren't working.  And they're probably not completely perfect.  But what I was really doing was starving myself.  I had convinced myself that food was hurting me.  I know you probably don't have that problem, but if you're not actually calculating your calories, it may be part of the problem.  Because some of us when we don't feel good, stop eating.  Others eat when they don't feel good.  I'm the opposite, and I'm training my mind not to blame the food for every ache and pain or weird feeling I might have.  And on top of that, I figured it's better to have some strange things happen from eating, rather than starve myself to death.  

Joe has spoken this truth to me before and I didn't quite get it.  At times we might eat some good food and feel lousy, but it might be because it's helping detox or whatever.  But in the past I started just avoiding things that make me feel lousy.  But that's not really smart, because it might be a one time thing.  So I've been adding stuff back in every day.  And trying to really let my mental guard down and be.  Now of course if we notice patterns and what not, we should probably consider acting on them.  But I was just going overboard with blaming food for everything.  When my pastor came over a little over a month ago, I was down to 114.  Last night I got on the scale it said 117.5.  God is good.  

I'm just saying you might want to track your calories and see.  And if you are still losing, eat more calories.  Even if your gut isn't working well, it's probably good to figure out where you need to be daily to not lose weight.  Brinyskysail has shared in another thread that she was eating 3k a day to gain weight because her guts weren't working great either.  And she's smaller than you and I.  That's a lot.  And she wasn't active at the time.  So....  Anyways, just thought I'd throw this out here for you to chew on.

Oh, and by the way, one of the foods that I started to ease up on when I was losing weight were grains.  Because "grains are bad" type thinking.  And I know B's might struggle a little more than others with them.  But I'm now eating 1/2 cup dried of either oatmeal or brown rice every night with a good amount of nuts and it's a power packed, calorie dense meal.  And it tastes oh so good and is very fulfilling to my soul.  I know that is one food category that has made a big difference.  And more red meats.  Although they aren't all real high in calories.  Lamb is.  But it's funny, the turkey burgers I get are higher than the beef and venison burgers I get.  Anyways...  I'm hungry, gotta go eat some new food!!!  Praise the Lord hallelujah!!!


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
Monday, December 12, 2011, 5:06pm Report to Moderator Report to Moderator

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TJ, chronic Candida goes hand in hand with Lyme.  Candida causes leaky gut too.  So while we've all got gluten damage, we've also all likely got Candida damage.  The reason Rob had his theory about me feeling better after running a fever is because yeasts and fungi flourish at slightly lower than body temperature.


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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114?  JJ?!  Dude!  I'm very thankful your relationship with food is improving.  I've been worried about 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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Age: 42
I was worried about me too.  But, the fact is, I think it was right place and right time, right message, God's timing is perfect.  Because the fact of the matter is, the more I eat, and push myself to eat, the hungrier I am.  I'm not sure if that would've been the case in the past.  There had been times my stomach just didn't like food.  I'd eat something and it's sit like a rock.  But even then, I was eating more than I was when my pastor came over.  I just had to take other things to coax my stomach to digest it.  At times I'd been on several digestive enzymes at one meal.  At one time I was taking 4 digest gold and 2 lypo gold at one meal.  That's TONS.  Right now, I don't need any.  And I'm hungry.  I haven't even been taking a probiotic.  I probably should, but I'll add that in when the time need be.  I don't want to detox right now, I want to build.  And my body seems to be agreeing with that.  Again, it's all timing.  But what I weigh is scary light.  And the plain stupid fact of the matter is, much of it was in my mind.  Yes, dealing with this disease and past struggles has shaped it, but I need to learn to push, instead of give up mentally.  I'm still going about adding foods somewhat slowly, but I try something new every darn day.  It might not always be a NEW food, but it's always some kind of stretch.  Like I just ate two figs that I've never had before.  I've had "black mission figs" before, but I've never had this companies.  And they look a little different than the ones I've been buying.  And that is a red flag to my mind, like it could cause a problem.  Which is crazy.  But that's what I've worked myself into.  And, there is probably some reason for trepidation.  But I have to throw some caution to the wind and just eat.  And not think about how it's going to affect tomorrow.  Live for today and the calories I need today.  I used to constantly worry about how it might affect me and how I might feel lousy and not be able to do such and such the next day.  Well, it made me not want to try any new foods and play it safe.  Again, I'm not saying that's what TJ is dealing with, I'm just saying what I'm dealing with.  

I ate a 1/3 of an egg on Saturday.  It had been about 3 months since I had eggs.  I felt kind of lousy that day and want to blame the eggs.  But there is also a cold going around and it could've been that and I'm telling myself that's what it is.  Now if I see patterns that are real hard to ignore, I'll give them some credence, but I'm done blaming food for all my ailments.  I NEED food, big time.  And this last month has shown me how true that is, and how helpful it CAN be.


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
Monday, December 12, 2011, 6:14pm Report to Moderator Report to Moderator

42% Teacher Rh+ N1, N1b
Kyosha Nim
Posts: 8,967
Gender: Female
Location: Northeast USA
Age: 71
I agree with RIbbit....It's candida/Lyme/gut dysbiosis...all going on at once. I always want fruit because my body is craving something that balances salty/savory...and although it sits well temporarily, I don't always feel well hours later. Does fruit cause rapid detox?  I want and need good carbs.  It's probably very difficult for a blood type A with chronic Lyme to avoid foods that feed yeast and candida...And I'm saying type A because our diets aren't supposed to be unbalanced with excessive protein.  All too acidic..There would never be enough calories in just plant foods minus fruit. Not many calories in soy foods.  How many nuts and seeds/beans can a person eat?  How many calories could there be in vegetables?  For anyone who is trying to gain weight, it's not easy. And trying not to lose is sometimes a great battle as well.  I seem to do best by eating every few hours rather than allow too much time to pass between meals because eating
does seem to generate more energy and make my body feel warmer. Just can't eat huge meals
because then I wind up feeling like I'm not digesting anything very well.

How many of us forget to eat slowly and chew every bite?  Drink fluids away from meals....breathe... exercise....or at least move around often.

JJR...sometimes it isn't just about the food.  I agree with you on that point.


"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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