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A thread to discuss lyme disease*  This thread currently has 172,523 views. Print Print Thread
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Spring
Monday, February 6, 2012, 4:32am Report to Moderator Report to Moderator

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Ee Dan
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Quoted from JJR
I don't care what their website says.    

Maybe you don't, but we can be glad that drug companies are honest about some things! Tylenol does more harm than good in my opinion, and there are other things that are beneficial in so many different ways. I don't want to mess up things by taking stuff that I know are not good for me. Just remember there are plenty more of us out here that could be having all sorts of inflammatory problems with the right/wrong regimen.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Spring
Monday, February 6, 2012, 4:47am Report to Moderator Report to Moderator

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If I start burning up inside and out, I take lots of lysine and/or chlorophyll. My new pet one though may be chlorella. Doing great so far. Do you ever check your pH when you are having those "spells," JJR?


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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TJ
Monday, February 6, 2012, 7:28am Report to Moderator Report to Moderator

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I used to take acetaminophen but I find more relief from ibuprophen.  Tylenol doesn't play nice with Lamictal, either.
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Kim
Monday, February 6, 2012, 7:06pm Report to Moderator Report to Moderator

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If you have Lyme disease, you shouldn't be drinking ANY alcohol at all.  
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Ribbit
Tuesday, February 7, 2012, 5:27pm Report to Moderator Report to Moderator

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Every so often, Kim, you've got to so something to calm down the nervous system.  That's what I was turning to.  I'm not drinking any anymore, but it served its purpose for a while.  

I've been on Ibuprophen for a week now.  I had another metal bridge removed and my jaw is so seized up from the injections that I'm having to take pain relievers 'round the clock.  I saw the chiropractor yesterday and he adjusted my jaw.  Hopefully I won't have to use as much Ibuprophen now.  Arnica cream isn't helping.


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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Kim
Wednesday, February 8, 2012, 11:55am Report to Moderator Report to Moderator

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Quoted from Ribbit
Every so often, Kim, you've got to so something to calm down the nervous system.  That's what I was turning to.  I'm not drinking any anymore, but it served its purpose for a while.  

I've been on Ibuprophen for a week now.  I had another metal bridge removed and my jaw is so seized up from the injections that I'm having to take pain relievers 'round the clock.  I saw the chiropractor yesterday and he adjusted my jaw.  Hopefully I won't have to use as much Ibuprophen now.  Arnica cream isn't helping.


I use Ashwaganda and L-Theanine to calm things down.  Not perfect, but it helps alot.  However, when you are herxing badly, the rage does come back.  I do know that with those two supplements, it is not very often that I have a melt down. Thank God!!!!
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Rev144
Thursday, February 9, 2012, 2:49am Report to Moderator Report to Moderator

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I am not sure if this has been posted or not.  I just recently listened to the the whole show.  
1 hour 35 min on Youtube.  Dr. Mercola Interviews Dr. Dietrich Klinghardt about Lyme

Dr. Dietrich says that 80% of his lyme patients have parasites.  And the very first thing he makes new patients do is stop using cell phones and get rid of all Wifi in the house.  Very interesting listen!

http://www.youtube.com/watch?v=RkXqxRfG0jk
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JJR
Thursday, February 9, 2012, 10:33pm Report to Moderator Report to Moderator

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I don't drink alchohol.  


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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JJR
Thursday, February 9, 2012, 10:41pm Report to Moderator Report to Moderator

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Quoted from Spring

Maybe you don't, but we can be glad that drug companies are honest about some things! Tylenol does more harm than good in my opinion, and there are other things that are beneficial in so many different ways. I don't want to mess up things by taking stuff that I know are not good for me. Just remember there are plenty more of us out here that could be having all sorts of inflammatory problems with the right/wrong regimen.


There is nothing "regemin" about when I take it.  I've had all of 320mg give or take 80mg, in the last 6 months.  That is not a regimen, it's a hail mary.  I know there are other things that fight inflammation that are probably better.  I have other things that I do too that are natural, but they don't seem to be as affective in the real bad times.  Until you've lived through what one of my real bad times are, you might reserve some judgement.  Whatever the case is, it HAS worked to help me through those times.  I do need to possibly try some other things mentioned here.  As I have not tried all of the herbal remedies.  There's probably something that might work well for me that I haven't hit on yet.  I guess I should get some of this "Ashwaganda" before spring hits.  I think there were some other things mentioned here.  I'll have to go back and look at it.  But like I said, I don't think one or one and a half pills in six months is really going to set my health back so badly that I shouldn't do it.  

No, I don't check my PH when I'm feeling really lousy.  I checked it about a week ago though.  My urine was 6.25.  It's been higher before, but 6.25 is probably pretty typical.  I doesn't go below that much though.  Which I think is a good thing.  


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
Tuesday, February 14, 2012, 8:03am Report to Moderator Report to Moderator

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Quoted from TJ
I just bought some nattokinase tonight.  One poster on Buhner's website had lots of good things to say about it, and suggested that it could help the herbal protocol to be even more effective.
I have observed that when I'm taking nattokinase I feel terrible.  Depression, confusion, fatigue, muscle weakness, etc., all worse than usual.  I've done a little research, and from what I've read, nattokinase breaks down collagen.  For us with Lyme disease, this is NOT a good thing.  The Lyme spirochete does enough of that already, breaking down our collagen and using the resulting soup as food.  That breakdown causes some of the pain and sensitivity we experience.  Collagen is what holds our bodies together.

Nattokinase also affects some other enzymes, metabolic processes, and tissues in ways that seem counterproductive in ways that aren't as serious as the collagen effect.  It seems like it's best used only by people with serious clotting or artery blockage problems.

Needless to say, I'm done with that stuff, and I warn you all to be very wary of it, too.
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Ribbit
Tuesday, February 14, 2012, 1:36pm Report to Moderator Report to Moderator

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Thanks for the warning, TJ.  I didn't even know what collagen was till my ND said I needed collagen support last time I was in to see her.  Then I read about it in Buhner's book.

I start the Cowden protocol today.  I'll keep y'all updated.  I had a pretty rotten day yesterday and nearly passed out because I was so dizzy. The wall kept me upright till I could get to bed and do the tapping that Debra O+ told me about (I think I've mentioned it here before) and three sessions of that brought me out of it. The children were making so much noise (at least in my mind) that I was shaking and crying and I told Rob I couldn't do this anymore and I just wanted all the kids to leave so I could sleep the rest of my life away.  Seems like he hears me better when I'm crying.  I don't cry much.  Maybe I should be more honest with how I'm feeling and allow myself to cry instead of stuffing it.  We are talking about asking someone to come help me during the day with the children.  I can't handle the arguing or the "schooling" that's supposed to be taking place.  We do some lessons, but I don't think it's enough.  And I hate using videos to keep the littler ones occupied while I'm working with the older ones, although it's becoming necessary.  A friend from church came once last week to spend the day and it was a huge help.  I can't think through the process of organizing the school room, and she was able to help with that.  It wasn't disorganized, it just wasn't working for the 9 y.o. and it needs to be restructured so it doesn't overwhelm her visually.  

I don't really get the rage.  I get very overwhelmed, like yesterday, but it's not rage I feel.  Maybe it's because I'm an introvert and am not likely to fly off the handle and say things.  If I get up the nerve to say something mean, it's because I really do mean it and it just took certain circumstances for me to admit it.  Or maybe I'm lying to myself and it really is rage.  Honesty with feelings wasn't something that was encouraged as a child, and I do a good job of hiding it all.  I guess that's why people are surprised now when I say anything about Stage 3 Lyme disease.  Because I don't look or act sick.  I push myself and force myself to appear normal because I've had to for so many years without a diagnosis.  I had to appear normal because I was often accused of being imaginative or just wanting attention.  Or "not trusting God" to help me with stress.  It's my default state.  Suck it up and smile, make people laugh to distract them from the problem, get off your rear end and do your job. I've been good at that. But I can't do my job if I have pin prickles in my vision and I'm too dizzy to stand up.

Enter Cowden protocol.  Like I said, I'll keep you updated.


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
Tuesday, February 14, 2012, 3:09pm Report to Moderator Report to Moderator

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Oh, and I'm running fevers again every night.  Never much over 99, but it's indicative of something going on.


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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ruthiegirl
Tuesday, February 14, 2012, 3:38pm Report to Moderator Report to Moderator

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I think fevers are a good thing- it means your body is actively fighting off bad germs. I went for YEARS without ever having a fever, even when I had an acute illness, and I really don't think that was  a good thing. I've had a  couple of fevers in the past few years, since starting BTD, and I think it's a sign of healing.


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


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ABJoe
Tuesday, February 14, 2012, 4:16pm Report to Moderator Report to Moderator

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Quoted from Ribbit
Maybe I should be more honest with how I'm feeling and allow myself to cry instead of stuffing it.

Honesty with feelings wasn't something that was encouraged as a child, and I do a good job of hiding it all.  I guess that's why people are surprised now when I say anything about Stage 3 Lyme disease.  Because I don't look or act sick.  I push myself and force myself to appear normal because I've had to for so many years without a diagnosis.  I had to appear normal because I was often accused of being imaginative or just wanting attention.  Or "not trusting God" to help me with stress.  It's my default state.  Suck it up and smile, make people laugh to distract them from the problem, get off your rear end and do your job. I've been good at that. But I can't do my job if I have pin prickles in my vision and I'm too dizzy to stand up.

My wife and I had this discussion about 5 or more years ago...  I would push until the body couldn't generate enough energy to maintain the muscles in a standing position and I would just wilt to a sitting position.  She said that this was just too hard on her and she NEEDED to have more honest assessments of how I felt.

I think the prickles and dizziness are signs of healing - probably cranial /brain healing.  My healing for the last 3 or 4 years has been cranial / brain / spinal - and I have had lots of dizziness, sinus, ear, TMJ, and pain in the spine or radiating from it...  I believe the nerves are more sensitive during healing than they were during the "damage" phase, or else the damage was either more shock, so masked; or more gradual so it didn't register what it was as much...  I realize it is really tough to get anything done when you feel like this, but I do believe this is indicative of healing - at least in my case I can tell it is.  Praying for your continued improvement.


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Spring
Tuesday, February 14, 2012, 4:41pm Report to Moderator Report to Moderator

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Just sent you a PM, Ribbit.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Spring
Tuesday, February 14, 2012, 4:58pm Report to Moderator Report to Moderator

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Quoted from JJR


There is nothing "regemin" about when I take it.  I've had all of 320mg give or take 80mg, in the last 6 months.  That is not a regimen, it's a hail mary.  I know there are other things that fight inflammation that are probably better.  I have other things that I do too that are natural, but they don't seem to be as affective in the real bad times.  Until you've lived through what one of my real bad times are, you might reserve some judgement.  Whatever the case is, it HAS worked to help me through those times.  I do need to possibly try some other things mentioned here.  As I have not tried all of the herbal remedies.  There's probably something that might work well for me that I haven't hit on yet.  I guess I should get some of this "Ashwaganda" before spring hits.  I think there were some other things mentioned here.  I'll have to go back and look at it.  But like I said, I don't think one or one and a half pills in six months is really going to set my health back so badly that I shouldn't do it.  

No, I don't check my PH when I'm feeling really lousy.  I checked it about a week ago though.  My urine was 6.25.  It's been higher before, but 6.25 is probably pretty typical.  I doesn't go below that much though.  Which I think is a good thing.  


When I used the word "regimen" I was talking about what other people take to keep down inflammation. It would be interesting to know what your pH is during one of your episodes. Ashwaganda, that Kim mentioned, is something that I keep around all the time. A really good supplement.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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JJR
Sunday, February 19, 2012, 9:23pm Report to Moderator Report to Moderator

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Having that oxygen starvation symptom today.  It's annoying.  Headache too.  And  little lightheaded when I get up.  It's unseasonably warm too.

I'm really trying to not get all worried about the changing of the seasons.  And something tells me I'll fair a little better this year.  Which is good mentally.  But something also tells me I'll still have some troubles.  It'd be nice if it was more of a smooth transition.  Which it seems like it might be.  It's been so warm up here all winter.  And we've seen the sun so much more than we have the past 5 years or so.   No where near the amount of snow and storms. And then last spring was like the epitome of extremes, up and down in the weather and it really seemed like it messed with me.  


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, February 20, 2012, 12:34am Report to Moderator Report to Moderator

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It's hard to see it as healing when it's all the symptoms of the sickness.

Observation about the Cowden Protocol: neurologically I am worse.  Digestive-wise I am better.  

Also, my test results from the LLMD finally came (it was Thanksgiving when I had them done).  Disappointingly, everything was completely normal except my blood glucose was low, 54 (and that was after a normal breakfast with plenty of protein) and Alkaline Phos (phosphate? was 28.  Supposed to be b/t 38 and 126.  Whatever that means.  Oh, and Antithyroid Peroxidase was 39 and it was supposed to be below 35.  I don't know what that means either.  All the Lyme tests and all the vitamin, mineral and hormone levels were normal.  Which I don't believe because I KNOW how much better I feel when I take supplements for certain vitamins and minerals.  It pretty much goes to show me that blood tests are still a joke.  Even the sensitive ones.  Just because a spirochete isn't visible....or just because an antibody isn't detectable doesn't mean I don't have it!  And just because potassium at normal levels are in my blood doesn't mean I'm using it correctly, hence the need for supplementation.


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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JJR
Monday, February 20, 2012, 10:07pm Report to Moderator Report to Moderator

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Usually they do blood glucose levels after fasting.  When you eat, it will do something to all of it.  But strange how low it was despite eating.  How long before they drew blood from eating breakfast.  It could be you were getting hypo from not eating again.  

I hear you on the blood tests not showing much.  It was the same with me.  At mayo I had a few things not be completely right, like vitamin D.  But then when they did the neurological test, it was a big fail on all levels.  But nothing in my blood tests would show that.  So......  

I'm sure sticking with your ND will continue to help you.  I guess it's one of those things.....  Either our bodies will fight it off and get better like we should be believing, or it's going to kill us a slow death.  I haven't struggled as long as you Leanne, so, I don't have the same level of fear and frustrations and doubts.  But I know you've had some up times.  Last year during summer it seemed like you were doing so well.  Maybe those times will come again.  Were you doing well?  It seemed like you had energy to do gardening and all kinds of stuff.  I know for me I've been up and down.  Some points were real low and other points were like, dang, I feel half human again!!!!  I've been having that lately.  Sort of up and down.  But the ups aren't overly bad.  I need to work on my stamina and strength.  I have a long way to go, and maybe I'll never get to where I want to be.  But lately I can't help but think there's a chance to overcome.  I've heard people do.  Some fully.  Some, maybe not so.  That's in God's hands.  We can only do as much as we can and the rest is up to him.  I know you know that.  Or believe that.  I'm just talking.  We prayed for you as a family the other day and I will try to remember to continue to do that from time to time.  Thank you for being there for me so many times.  


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, February 23, 2012, 6:54pm Report to Moderator Report to Moderator

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I decided to try Niacin (real Niacin, the flushing kind) for the first time last night. It was recommended by someone in another group and my father swears by it.

I bought a bottle of 500mg capsules and took one with dinner. I was of course expecting flushing of the skin and tingling, but I had a much more severe reaction.

1 - I had intense flushing, my skin looked fluorescent, and was pretty painful.

2 - The flushing/tingling was in my head, my upper chest, my arms, and my knees.

3 - My legs broke out in a rash and became swollen.

This lasted about three hours and then I started having a strong (Babesia) herx reaction, I think. This is the kind of reaction I get if I take too high a dose of Artemisinin or A-Bab.

1 - This includes, constriction of my heart (the feeling you get on your finger when a band aid is too tight, my heart feels like this) and severe pain

2 - Racing and strong pulse

3 - Weakness

4 - Intense inching (mostly my upper chest and back)

I had to take several pain pills to ease the pain in my heart and could not go to sleep until 5 AM.

Of course I didn't make it to work today. I just got up a little while ago and my heart is still hurting.

Question - Has anyone else had a response like this? I'm trying to decide if this was a herx response or niacin response. If it's a herx, I believe I should try a much lower dose as I might be killing my Babesia bugs.

Any thoughts? Of course I'll check with my doctor when I see him next month. But if someone has had a similar experience I'd love to hear about it.

Thanks,

Connie


"Anxiety is the gap between now and then"

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JJR
Thursday, February 23, 2012, 8:17pm Report to Moderator Report to Moderator

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I've never had niacin before I don't believe.  You gotta love these crazy reactions.  Ugh.  I'm sorry for your pain!!!  But yeah, if it was a good thing, it will probably help you in the long run.  Hopefully you'll get the inflammation under control here so you're not in pain.  Do you eat pineapple?  I'm a pineapple junkie and I think it helps with inflammation.


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
Thursday, February 23, 2012, 9:05pm Report to Moderator Report to Moderator

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Quoted from nowishow
I bought a bottle of 500mg capsules and took one with dinner.

I think this was too large a dose to start with.  I also don't like to take 1 B vitamin by itself.  This reaction seems a bit harsh to repeat...

I am much more comfortable starting with a small amount of Nutritional Yeast and working up in dosage to obtain the desired effect.  With the NY, your body has various B vits available and can use what it needs and flush the rest...


RH-, ISTJ
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Spring
Thursday, February 23, 2012, 10:23pm Report to Moderator Report to Moderator

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Quoted from ABJoe

I think this was too large a dose to start with.  I also don't like to take 1 B vitamin by itself.  This reaction seems a bit harsh to repeat...I am much more comfortable starting with a small amount of Nutritional Yeast and working up in dosage to obtain the desired effect.  With the NY, your body has various B vits available and can use what it needs and flush the rest...

I'm certainly with you on this Joe. I was just thinking yesterday that it horrifies me to see the astronomical amounts people will throw down of stuff they have never used, and I guess just hope for the best! I would think just a cursory search online would show that niacin is administered in a gradual dosage. Maybe not, but this has always been my understanding that it is widely known that this stuff has to be taken carefully and increased over a period of time. I'm beginning to think that supplements are a whole lot more powerful than people realize!


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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nowishow
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Age: 56
Quoted from Spring

I'm certainly with you on this Joe. I was just thinking yesterday that it horrifies me to see the astronomical amounts people will throw down of stuff they have never used, and I guess just hope for the best! I would think just a cursory search online would show that niacin is administered in a gradual dosage. Maybe not, but this has always been my understanding that it is widely known that this stuff has to be taken carefully and increased over a period of time. I'm beginning to think that supplements are a whole lot more powerful than people realize!


I was told by my doctor to start out on 500 mg and work my way up to 2000mg. It's a theraputic dose not a regular supplemental dose.


"Anxiety is the gap between now and then"

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nowishow
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B+ 51% Swami Explorer - D'Adamo diet since 1999
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Posts: 678
Gender: Female
Location: Sonoma County, CA
Age: 56
Quoted from JJR
I've never had niacin before I don't believe.  You gotta love these crazy reactions.  Ugh.  I'm sorry for your pain!!!  But yeah, if it was a good thing, it will probably help you in the long run.  Hopefully you'll get the inflammation under control here so you're not in pain.  Do you eat pineapple?  I'm a pineapple junkie and I think it helps with inflammation.


Yes I've tried a lot of different things to help with inflamation. My favorite are tumeric and enzymes, but they never seem to help with the inflamation of the heart or the brain. Thanks anyway.


"Anxiety is the gap between now and then"

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