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A thread to discuss lyme disease*  This thread currently has 172,130 views. Print Print Thread
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JJR
Saturday, October 29, 2011, 10:43pm Report to Moderator Report to Moderator

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Kyosha Nim
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Maybe tomorrow afternoon might be a good time.  Elizabeth is taking Jack to get his pictures taken.


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
Saturday, October 29, 2011, 11:06pm Report to Moderator Report to Moderator

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Ee Dan
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Quoted from Ribbit
Y'all, I can't even concentrate enough to read all this.  It makes me mad at myself.  

Kim, you have to get better.  If that means having surgery, for goodness' sakes, get it done!  And that's coming from someone who is very anti-surgery.  (I'm so anti-surgery that when I nearly lost all my pelvic organs with the birth of my most recent baby, I refused to have surgery to have it all put back in place even though my body was becoming more and more toxic by the day.  I'm thankful to God for online networks of people whose knowledge and experience direct us to help.)  But wouldn't you rather know you'd done all you could?  I'm also very anti-antibiotics.  But when nothing else is working and you're desperate, you take the drugs!


You are right.  I have been trying to hang onto an organ that isn't helping me anymore.  In fact, my LLMD says it is hurting me.  He is a stickler for getting pain, inflammation and sleep exactly in order before he starts any antibiotics.  He said he can't get me well if those things are not in some kind of balance.

I have been fighting this disease a long time, although I didn't know that it was Lyme, and I think one becomes accustomed to being in pain all the time.  Also most doctors don't want to give you anything to help the pain because either they are afraid to prescribe a narcotic (or they don't work), or they think you are a hypochondriac.  

For now, I am sleeping all night without interruption for the first time in years.  The pain meds have me at a 4/5 instead of the usual 8-10.  The neuro symptoms have me in a panic over anything and everything.  

That is so hard to do when your husband has late stage neuro lyme too.  I don't know who is holding up whom.  By the grace of God, we will get through this.

What I look forward to every day is going into my sauna for 45 minutes and playing praise & worship music on my mp3 player.  I am working on being "Thank full" for what God has given me and for being with me through all this.  I just have to keep reminding myself, that I am not alone in this.  



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JJR
Sunday, October 30, 2011, 12:10am Report to Moderator Report to Moderator

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Kyosha Nim
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I hear you on all accounts.  My doctor is saying they don't want me to start killing the lyme and co infections too aggressively, until I get stronger.  Which seems kind of counter-intuitive.  But, whatever, I need to build up my system to a degree better than it is now.    


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
Sunday, October 30, 2011, 12:10am Report to Moderator Report to Moderator

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Kyosha Nim
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No, you are certainly not alone.   You hold each other up, Kim.  I will be praying for the both of you to be able to respond to each other with grace and patience.

That's fine, JJ.


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
Sunday, October 30, 2011, 12:11am Report to Moderator Report to Moderator

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Kyosha Nim
Posts: 8,156
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Age: 36
JJ, what my ND has been doing for the last year is strengthening my immune system so *it* can fight the Lyme.  She waited this long to introduce these homeopathics.  


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

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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Spring
Sunday, October 30, 2011, 12:37am Report to Moderator Report to Moderator

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Ee Dan
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Quoted from Ribbit
JJ, what my ND has been doing for the last year is strengthening my immune system so *it* can fight the Lyme.  She waited this long to introduce these homeopathics.  


That is exactly what I did when I was so overwhelmed with candida. I was on a very strict diet with piles of supplements - as it turned out, all of them were fine for my blood type. I think Someone was definitely looking out for me there! After several months on all that I started the meds and was able to endure the die-offs without killing myself or someone else. The first thing I started taking along with the diet was probiotics. That was the only supplement I could stand in the beginning.
There is no telling how many people all of you are helping with your posts about how you are dealing with lyme's disease. I think all of you deserve some sort of special public service award!


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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JJR
Sunday, October 30, 2011, 3:04am Report to Moderator Report to Moderator

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Kyosha Nim
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You would've thought that's what I've been doing for the last 2-1/2 years of being with this particular doctor.  But actually, I think I was detoxing.  I was heavy metal toxic.  And I had yeast pretty bad.  And I had H.Pylori real bad.  I don't think any of these are completely wiped out by any means, but I think they are more under control now.  So, I guess it makes sense that now it's the immune system.  Because the immune system is so important.  And that might be the whole thing about red meats for me too.  For a long time, I didn't want them, I couldn't digest them.  And I was better off without them.  Now, I'm craving them, I'm eating them more, I'm not stopped up and my swami says I should be.  And I'm pretty sure red meats will boost your immune system.  At least if they're right for your type.  

So, I guess I need to start talking to my immune system.


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
Sunday, October 30, 2011, 11:25am Report to Moderator Report to Moderator

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Ee Dan
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Link to the IDSA protest in Boston about Lyme disease.

http://www.squidoo.com/lyme-pa.....e-disease-guidelines
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Kim
Sunday, October 30, 2011, 11:29am Report to Moderator Report to Moderator

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Ee Dan
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Quoted from JJR
You would've thought that's what I've been doing for the last 2-1/2 years of being with this particular doctor.  But actually, I think I was detoxing.  I was heavy metal toxic.  And I had yeast pretty bad.  And I had H.Pylori real bad.  I don't think any of these are completely wiped out by any means, but I think they are more under control now.  So, I guess it makes sense that now it's the immune system.  Because the immune system is so important.  And that might be the whole thing about red meats for me too.  For a long time, I didn't want them, I couldn't digest them.  And I was better off without them.  Now, I'm craving them, I'm eating them more, I'm not stopped up and my swami says I should be.  And I'm pretty sure red meats will boost your immune system.  At least if they're right for your type.  

So, I guess I need to start talking to my immune system.



As beaten down as we feel from time to time, it is the fight for our lives right now.  According to the Burrascano Lyme guidelines, those that continually show up for appointments feeling beaten down, never recover well.

So do what ever you must to get your "fight response" up and running.  We must do what ever we can to keep our attitude in the right place.

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Ribbit
Sunday, October 30, 2011, 2:27pm Report to Moderator Report to Moderator

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Kyosha Nim
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I remember being in that very dark place a year ago.  I have told myself over the years of postpartum depression that if I ever lost interest in my music and gardening, that was the end.  The music was the first to go.  And by the end of last summer, I didn't care about the garden anymore.  It scared me.  I honestly didn't care.  It didn't bother me that there were okra pods calling my name or butter beans ripe for the picking.  I couldn't go out there just to putter around or sit quietly.  I didn't care. And it scared me.  My apathy was frightening--looking back.  I figured the baby was old enough to survive with someone else as her mother, and I started wondering who DH would marry after I was gone.  And then I started seeing Dr. E and I began to get better.  Yeah, when the adrenals give up the fight, it's hard to drum up the resistance to keep kickin'.


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, October 30, 2011, 2:35pm Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from JJR
Because the immune system is so important.  And that might be the whole thing about red meats for me too.  For a long time, I didn't want them, I couldn't digest them.  And I was better off without them.  Now, I'm craving them, I'm eating them more, I'm not stopped up and my swami says I should be.  And I'm pretty sure red meats will boost your immune system.  At least if they're right for your type.  

So, I guess I need to start talking to my immune system.
At this point, I don't think my own immune system is enough by itself, no matter what supplements I take or what dietary practices I follow.  That's not to say that it doesn't help to have a strong immune system!  To that end, it's good to be back on the Nomad diet.  Considering the toxic conditions I was in back in NC, the Explorer diet was a good thing then, but once that trial was over it was time to move on.  Realizing that I actually had a "receptor" type immune system (instead of the Explorer "reactive" type) has made a big difference in how I approach diet and supplements.  I'm sad that I needed to spend so long taming down my immune system, but it was necessary at the time.

I've been thinking about the ways in which Lyme cripples me.  I had my doubts, and I'm sure most others who know me do, too.  I still appear "smart", i.e. mentally sharp.  To a degree, I am, but only if I have all the time I need to think things through, or if I've already thought it out.  I can't think quickly, and thinking things through is a huge drain.  If I get caught with something with "time pressure", I often fall apart.  Day to day, I don't look like I have serious balance or coordination problems, but when I get tired I see them clearly.  It's like I can do most things I need to do to look "normal", but it takes a lot more energy and time to do them than it should.  I can (and do) put on a good front, but it's very very tiring.  But what else can I do?  I have to have it "together" to a certain degree to work and interact with other people, and I don't always feel like it's so much work.  Maybe the flare has died down during those times.  When I'm feeling wrecked, I do what I have to do and go home.  I don't look sick during those times, just irritable, tired, and mildly depressed.

I wish there was some good way to get in touch with my doctor and find out if he's doing the research on Lyme that I hope he's doing.  He's very busy with patients at his office, and if I pester him it will look like I "protesteth too much" and that I want a Lyme diagnosis too badly (hypochondriac).  It's hard to be patient, and I'm not sure what I'll tell him when I go back if he hasn't studied and come to the right conclusion on his own.  But I've done what's reasonably within my power to do (state my case and make him aware of the information he needs to study), and now I just have to trust in the Lord that he will prepare the way before me.
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JJR
Sunday, October 30, 2011, 4:58pm Report to Moderator Report to Moderator

33% Nomad, calories calories!!!!!!
Kyosha Nim
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Age: 42
Psalm 139:14
I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.

I didn't sleep well last night because my legs and knees were aching to beat the band.  That is something I've never had before until this year.  It was bad enough to keep me up a good amount.


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
Sunday, October 30, 2011, 9:42pm Report to Moderator Report to Moderator

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Kyosha Nim
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Age: 36
I was up till after 2 a.m. just laying there.


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
Sunday, October 30, 2011, 9:43pm Report to Moderator Report to Moderator

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Kyosha Nim
Posts: 8,156
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TJ, I'm the same way.

JJ, I'm at home.  I just couldn't get to the phone that fast.  Talk longer next time.  


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
Monday, October 31, 2011, 1:22am Report to Moderator Report to Moderator

54% Nomad
Kyosha Nim
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Age: 39
The Physician as a Patient: Lyme Disease, Ehrlichiosis, and Babesiosis — A Recounting of a Personal Experience with Tick-Borne Diseases - a doctor's experience with Lyme disease.

Quoted Text
The [infectious disease] specialist was barely polite. His attitude was dismissive and annoyed. He implied I was wasting his time. The ring had faded by the time I got an appointment. He said it was not possible for the same person to have had two Lyme disease bull's eye rashes over time. He said he would not treat non-symptomatic deer tick bites, even if he were convinced the rash was Lyme related. Anyway, “Only 10% of those bitten by infected ticks get Lyme disease.”

Quoted Text
In my first ever trip to an Emergency Room as a patient, I begged the doctors there to admit me—they refused because my “numbers were good.” Next day, my cardiologist admitted me to another hospital for evaluation. I tried to explain my prostration in the presence of “good numbers” by rambling on to the admitting doctor about trivial stresses. I realized much later that I was trying to make sense of it myself, I was grasping at straws for an explanation of what was happening to me. I had extreme body weakness and severe multiple, specific muscle pains and tenderness that I only can describe as unearthly.

I really identify with this last one, especially the "psychologic timidity".
Quoted Text
Then occurred a dramatic lack of confidence in doing even the routine things I love to do and still was able to do—a daunting physical sense of psychologic timidity. Seeing the usual full day's number of patients was unthinkable because of this alone. I felt as if the self I knew was dissolving. I found myself impulsively irritable at inappropriate times.
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JJR
Monday, October 31, 2011, 3:08am Report to Moderator Report to Moderator

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Kyosha Nim
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Yeah, those last two I've experienced in full force.  It's not pretty.  But regardless, I'm trying to have joy.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Spring
Monday, October 31, 2011, 11:02am Report to Moderator Report to Moderator

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I really identify with this last one, especially the "psychologic timidity". TJ
Quoted Text
Then occurred a dramatic lack of confidence in doing even the routine things I love to do and still was able to do—a daunting physical sense of psychologic timidity. Seeing the usual full day's number of patients was unthinkable because of this alone. I felt as if the self I knew was dissolving. I found myself impulsively irritable at inappropriate times.

I can really relate to that feeling too, TJ. I can create patterns and make decent looking garments from them, but I got so bad with the feelings described here in this quote that I would sit at my sewing machine and cry because I didn't have the courage to attempt anything. I would hang garments in view that I had made before and think to myself, "Did I really make that?" If I finally did make an attempt to sew I would be in a cold sweat. I completely lined the garage with a wall covering when I was a lttle better but not a whole lot. It was over a year before I could walk through there and actually be convinced that I had done the job myself. It seemed like soneone else had done it. I had no confidence in myself whatsoever.

One question I would like to ask all of you is this: Do you take B-vitamins? I tried to take B-12, 1000 mcgs., separately from food, etc., the way the folks at NAP suggested but it does not work for me that way for some reason that I don't understand. A horrible feeling would come over me that is hard to describe but it was basically disabling to the point that I would have to lie down. I found out, though, that as soon as I would eat something the feeling would go away. So I tried a little experiment. Now, I take all my B-vitamins together, separately from food, etc., and I have gradually increased the NAP B-12 until I am around 400-500 mcgs. per day. I intend to keep increasing it until I get to 1000 mcgs. - if no problems turn up.  This regimen has been a tremendous help to  me with the panic attacks etc., and I feel so much calmer and self-assured. One thing I would like to mention is that I am very careful about the balance of the B-vitamins and go to a bit of trouble splitting pills so I can get the right one that works for me. I suggested this way of taking B-vitamins to one of my sisters and when I saw her recently I could not believe how much better she seemed and so much happier and relaxed! Before, she had been otherwise healthy as a horse except for those panic attacks! Just thought I would mention this.........


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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JJR
Monday, October 31, 2011, 3:19pm Report to Moderator Report to Moderator

33% Nomad, calories calories!!!!!!
Kyosha Nim
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I've never been told to take B vitamins away from meals.  Huh.  I always take mine with meals.  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Spring
Monday, October 31, 2011, 6:41pm Report to Moderator Report to Moderator

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Ee Dan
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Quoted from JJR
I've never been told to take B vitamins away from meals.  Huh.  I always take mine with meals.  


I always did before, but the benefits were not even close to what they are now. Not remotely. Dr. D. recommends taking it  away from food in his protocols.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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JJR
Monday, October 31, 2011, 9:32pm Report to Moderator Report to Moderator

33% Nomad, calories calories!!!!!!
Kyosha Nim
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Age: 42
I never noticed that on his bottles.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Spring
Monday, October 31, 2011, 9:58pm Report to Moderator Report to Moderator

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Oh, dear........... It is in the Protocols.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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TJ
Monday, October 31, 2011, 10:47pm Report to Moderator Report to Moderator

54% Nomad
Kyosha Nim
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Today is day 7 on antibiotics.  It's interesting to note that, when I saw the doctor last week, I was well on my way back out of my latest funk -- or should I call it a flare?  Anyway, by Friday I was going back down again.  Should I be sad?  Should I be happy?  It's not fun to be feeling worse and more disabled, but on the other hand, if I feel worse on antibiotics, that's another indicator that there is a bacterial problem involved, and more evidence to support the Lyme theory; otherwise the antibiotics shouldn't make me feel better or worse.

Quoted from Spring
One question I would like to ask all of you is this: Do you take B-vitamins? I tried to take B-12, 1000 mcgs., separately from food, etc., the way the folks at NAP suggested but it does not work for me that way for some reason that I don't understand. A horrible feeling would come over me that is hard to describe but it was basically disabling to the point that I would have to lie down. I found out, though, that as soon as I would eat something the feeling would go away. So I tried a little experiment. Now, I take all my B-vitamins together, separately from food, etc., and I have gradually increased the NAP B-12 until I am around 400-500 mcgs. per day. I intend to keep increasing it until I get to 1000 mcgs. - if no problems turn up.  This regimen has been a tremendous help to  me with the panic attacks etc., and I feel so much calmer and self-assured. One thing I would like to mention is that I am very careful about the balance of the B-vitamins and go to a bit of trouble splitting pills so I can get the right one that works for me. I suggested this way of taking B-vitamins to one of my sisters and when I saw her recently I could not believe how much better she seemed and so much happier and relaxed! Before, she had been otherwise healthy as a horse except for those panic attacks! Just thought I would mention this.........
Spring, I take a 2500 mcg sub-lingual methyl-B-12 lozenge in the morning, if I remember to.  At lunch, I take a multivitamin that has my B vitamins in it.  I have done some experimenting with B vitamins, and I think I'm getting what I need right now.  I don't feel an acute difference on days I forget my B-12 from the days I take it.  If you react to B12, it may be a good idea to do some research on the possible adverse effects of B12 supplementation.  I am happy that it's helping your sister!

I looked at a few of the protocols as you mentioned.  I only saw B12 in those I looked at, but it does recommend B12 on an empty stomach.  Were there "away from food" recommendations for other B vitamins?  When I take my lozenge it's usually in the morning before work and before I eat.
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Kim
Monday, October 31, 2011, 11:59pm Report to Moderator Report to Moderator

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Ee Dan
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TJ- My lyme doctor has me injecting methylcolbalamin twice a week.   With lyme, we need more than healthy people and we usually don't absorb food and supplements well.  

Maybe you could ask your doctor if you might do better with injecting B12.
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TJ
Tuesday, November 1, 2011, 2:45am Report to Moderator Report to Moderator

54% Nomad
Kyosha Nim
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Location: Midvale, UT, USA
Age: 39
Quoted from TJ
I don't feel an acute difference on days I forget my B-12 from the days I take it.
It's still helping, I just don't notice if I miss a day.
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Spring
Tuesday, November 1, 2011, 3:39am Report to Moderator Report to Moderator

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TJ, I was going by your previous post about the feelings you have and wondering if B-vitamins would help that. After I started taking all my B's at one time away from food, I don't have any bad feelings at all, and stopped having panic attacks. There is some info on this Medline site about Vit. C causing a problem with absorption. Maybe a little mini refresher course about what the B-vitamins actually do for us would help to relate to any symptoms we have that they might be able to help. Hope this makes sense - I have been up since 5:30 this AM and I definitely am getting sleepy!
http://www.nlm.nih.gov/medlineplus/druginfo/natural/926.html


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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