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A thread to discuss lyme disease*  This thread currently has 151,404 views. Print Print Thread
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nowishow
Wednesday, November 9, 2011, 10:41pm Report to Moderator Report to Moderator

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Quoted from TJ
Nowishow, have you looked for supps that don't have stearates or stearic acid in them?  That stuff is believed to reduce absorption.


Yep I stay away from that, I usually feel naseous if I take a supplement with those additives in them. Thanks for the advice.


"Anxiety is the gap between now and then"

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Kim
Thursday, November 10, 2011, 12:30am Report to Moderator Report to Moderator

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Finally got out of the hospital today.  This particular hospital had great service in their cardiac wing when my husband was there a few times, but on the surgical floor, they actually are horrible.

It took two hours to get anything from them.  Because they found stones in my bile ducts, there had to be a second procedure done on Tuesday.  They have to go after the stone endoscopically.  Meanwhile, I was NPO from Sunday evening until this morning.  Major migraine going on from that.

The second procedure was rough.  I had to lay on my stomach on a table and turn my head to left.  Between the surgical pain and my neck pain they had to heavily sedate me.   At some point last night, my heart rate ended up in the 40's.  Thank the Lord, I did wake up.

I also think the anesthesiologist did not listen when I said I had herniated discs in my neck and that he could not bend my head back far to put in the breathing tube.  So I still have a raging headache.  

This morning after fighting with the nurses, they finally brought me a gluten free tray.  Now tell me, if someone hasn't eaten in three days, you don't bring them scrambled eggs and sugary gluten free cereal!  I wasn't going to eat that.

I got so mad, that I called the nurse, and 15 minutes later when she showed up, I told her to take the IV out because I was going home.  I said if the doctor won't release me, I am leaving AMA.  Told her that the service at this hospital was not adequate to take care of someone that was sick and they took hours anytime I needed anything.  

They took the IV out and my husband was up in 30 minutes to get me.  Now I am hoping that my neck isn't injured or I am going to have to contact that doctor and do something.

Ate a little bit today.  Trying to go slow as I am full after a couple of bites.  Still pretty sore, but with 3 stones in my bile ducts, I really dodged a bullet.  Still more stones in the gallbladder, but the ones in the bile duct could have really caused an ER visit.

Thanks for all the prayers to get me through this.  I was scared to death, but am so happy to be home.  My dogs were a wreck until I came home.  They haven't left my side since I got home.  Those slobbery kisses are the best medicine.
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deblynn3
Thursday, November 10, 2011, 12:39am Report to Moderator Report to Moderator

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  Glad your home, hope no damage done.  I checked myself out at midnight once. Never went back or saw that Doc. again.  But I really liked the Doc. etc the one other time I had to be in.  Wish there was a way to know "the bad, the good and the ugly" before we go.


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ruthiegirl
Thursday, November 10, 2011, 12:56am Report to Moderator Report to Moderator

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I'm sorry you had such a horrific experience in the hospital, but I'm glad it's over, and you're home and on the mend.

Be gentle with yourself. It may take you a few weeks to fully recover.


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


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JJR
Thursday, November 10, 2011, 6:36pm Report to Moderator Report to Moderator

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I'm glad you are home!!!

I had a horrible day yesterday.  But better today!!  Praise the LORD.  

I have been really anxious about everything having to do with food.  Is this going to hurt me, is that.  Did that, is this dirty.  Etc Etc.  It's getting out of hand.  I think I need some seretonin.  I'm real germ anal, washing my hands a lot and worrying about if the food is clean, like lettuce.  Last night I ate oatmeal and had an anxiety attack because:  It was the only thing different in my diet the night before and I thought it might have been what made me feel real bad the next day.  And I didn't think about it until after I ate half of it.  So I freaked.  But I got over it.  Then, here's a funny one for you.  I have a friend that is over in Tunisia, and he had sent me a gift.  My wife brought it in and opened up the box.  It is a beautiful, hand woven basket, with a polo shirt from the US Embassy.  And I got a wiff of the basket and I was like, oh no!!!  Who knows what germs he sent me from Tunisia.  He told me he gets the runs every 3 days because of the food and I was just having a hard time not thinking I've been poisoned with the tunisian dropsy.  So I had my kids open the windows, despite it being 40 degrees out.  Run a fan.  Then I had them tape the box back up.  Then, after thinking about it further, I had them put the box in a garbage bag and put it out in the garage.  HOW TERRIBLE OF ME!!!!  A friend sends me a gift and I freak about getting some kind of tunisian terror.  That's bad.  Can anyone relate to this?  Or are you guys like, OH MY, you need a life!!!  I know being low on minerals or the right things has helped do this to my mind, but I'm not sure what to do about it.  Same with the food.  It's all the times in the past, feeling lousy after eating something, my mind is not doing well with the thought.  Anything that just tastes slightly off, I'm spitting it out.  Etc.  It's distressing.  Anyone deal with this and have ways to overcome this?

ribbit, my spleen has been killing the last couple of days. It's either that or my kidneys.  Or probably both.  I get a twinge there now and then.  Actually it's not as bad today as it was yesterday.  But yeah, the spleen is not happy.  I take spleen PMG or dessicated spleen by standard process and it does seem to help.  I haven't tried the red root yet.  

My hands are terribly dry and cracking.  Anyone got a solution that won't freak with my mind?  I don't want to use coconut oil because I'm having a hard time with wanting that lately.  I was thinking of just rubbing a little olive oil on it.  We have this "Kiss my face" olive oil butter my wife has, but I don't know if it has other junk in it.  It doesn't say on the canister.  I should look it up.

Signed Crazy in Wisconsin.


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
Thursday, November 10, 2011, 7:24pm Report to Moderator Report to Moderator

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JJR, I think I'd be in the same crazy neighborhood without my meds.  The Prozac helps me to physically relax and slow down.  The Prozac is supposed to be for anxiety, but the Lamictal does a lot of good for that, too.  Without the Prozac, I'd have a hard time falling asleep at night; I'd be rushing around like a spaz, wearing myself out, then totally crashing; and I'd be somewhat germaphobic myself.  Without the Lamictal, I'd be getting emotionally depressed in addition to the other "depression" symptoms; and I'd be constantly assuming the worst about other people's motives.  They both tone down the intensity in my brain.  My brain shouldn't be working that way, but that's how it is right now, and it might always be that way, depending on if the damage can be healed.

The meds are a crutch for me, and make it much easier to use my limited resources to deal with other things.  This has been my experience.  I'm not trying to sell you on meds, but still, it may be a good idea to talk to someone about your anxiety and getting medication for it.
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TJ
Thursday, November 10, 2011, 7:25pm Report to Moderator Report to Moderator

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BTW, I decided to drop the rest of the supplements today.  Genoma Security has Siberian ginseng in it, and I figured a few days off it won't make much difference for the biofilms.

Kim, how are you doing today?
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Chloe
Thursday, November 10, 2011, 7:59pm Report to Moderator Report to Moderator

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Glad you're home Kim. Hope you're feeling better today.


"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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ABJoe
Thursday, November 10, 2011, 8:11pm Report to Moderator Report to Moderator

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Quoted from JJR
Anyone deal with this and have ways to overcome this?

Just because you're paranoid, doesn't mean they aren't out to get you...

Seriously, my overreactions were of a different nature, but were mostly handled once I accepted that I really was as sick as I was and that I couldn't continue to pretend that I was functioning "normally".

I have put things out to air when I had a problem - usually with a scent, but generally don't "create" problems when not experiencing one.  In these cases, I allow the item to breathe so anything "wrong" can dissipate without me being around.

If I'm not sure whether something is bothering me, I usually try it again later when I can focus on any possible symptoms before I make a decision.



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JJR
Thursday, November 10, 2011, 8:46pm Report to Moderator Report to Moderator

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Joe, I don't quite understand all of what you're saying.  As far as the "scent" goes.  I talk to my wife about it, and other people, and it helps.  It doesn't make me less germaphobic though.  As far as waiting to feel how I feel when eating something, it's been a real battle.  I like to be feeling at least somewhat normal before introducing something new.  Oatmeal isn't new.  I have at times found it hard to digest, especially if it's real thick.  But last night was different.  It was a rush right away.  Now I figured it was 2 or 3 things.  It was a ruch of minerals that I needed, and was beneficial.  Because my wife said I got hot.  Or, it was anxiety.  Which can probably do that too.  Or it was a little of both.  Because I feel better today than yesterday, even with eating the oatmeal.  Although it was about half of what I ate the night before.  But the night before, I felt completely fine after eating it.  It's just one of those things.  It could've been the oatmeal.  But was it a good or bad thing is the mystery.  And one that's hard to reconcile in my brain.

Another thought I had is it might just be that my body is craving cooked foods more now.  Which is why maybe I'm having a deal with the salads more.  I find myself wondering about how clean the leaves are, etc.  But when I cook veggies, I'm not really worried about them.  Except if the dishes I used were clean or not.  


TJ, I've been off of my seretonin support for over a week now.  And I'm pretty sure that's what making it worse.  I would rather try supps before a drug.  Although if it was bad enough, I'd go the drug route and understand.  But it would be a last resort for me.  You could see if your ND might could prescribe a supp that might help.  But, I totally understand.  We have to function.  Plus I know you don't have a job now.  I pray you find a replacement soon.


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, November 10, 2011, 10:02pm Report to Moderator Report to Moderator

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JJR - The fact that you notice how anal or anxious you are says, to me at least, that you are not too bad. If you were really crazy you would think you are reacting perfectly normally. But still, I would start taking some 5HTP (seritonin precursor) and/or Ashwaghanda. Both of these have been really helpful for me.

I sympathize and I really know what you're going through. I've felt much the same at many times. It's all part of the illness. Hang in there  


"Anxiety is the gap between now and then"

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nowishow
Thursday, November 10, 2011, 10:05pm Report to Moderator Report to Moderator

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Kim - I'm so glad you're home   my dog was very concerned about me while I was in the hospital as well. Dogs make the best nurses, don't you think? It sounds like it was a really good idea you had the operation. I hope your recovery is very speedy, but take it slow  


"Anxiety is the gap between now and then"

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JJR
Thursday, November 10, 2011, 10:36pm Report to Moderator Report to Moderator

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Quoted from nowishow
JJR - The fact that you notice how anal or anxious you are says, to me at least, that you are not too bad. If you were really crazy you would think you are reacting perfectly normally. But still, I would start taking some 5HTP (seritonin precursor) and/or Ashwaghanda. Both of these have been really helpful for me.

I sympathize and I really know what you're going through. I've felt much the same at many times. It's all part of the illness. Hang in there  


It does make me feel better to know it's somewhat normal to be feeling like this.  Thank you.  I have another supplement I'm suppose to try also called L-Theanine.  Supposedly that helps and it's in green tea.  But I do have seretonin support which is: 500 mt or L-TYROSINE and 50mg or L-5 hydroxytryptophan.  Which must be what you're talking about.  So, tonight I'll be adding it back into my regiment and see how it works.  They had me off of it since my last appointment, but now I need it again.  



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, November 11, 2011, 2:05am Report to Moderator Report to Moderator

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IIRC, L-tyrosine increases dopamine, not  seratonin. The  L-5 hydroxytryptophan sounds like a form of tryptophan, which does increase seratonin,


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


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JJR
Friday, November 11, 2011, 3:49am Report to Moderator Report to Moderator

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Well, the supp I take has both of that.  It has seemed to help me in the past.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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ABJoe
Friday, November 11, 2011, 4:28am Report to Moderator Report to Moderator

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Quoted from JJR
Oatmeal isn't new.  I have at times found it hard to digest, especially if it's real thick.  But last night was different.  It was a rush right away.  Now I figured it was 2 or 3 things.  It was a rush of minerals that I needed, and was beneficial.  Because my wife said I got hot.  Or, it was anxiety.  Which can probably do that too.  Or it was a little of both.  Because I feel better today than yesterday, even with eating the oatmeal.  Although it was about half of what I ate the night before.  But the night before, I felt completely fine after eating it.  It's just one of those things.  It could've been the oatmeal.  But was it a good or bad thing is the mystery.  And one that's hard to reconcile in my brain.

JJ,

I've had that reaction - the hot while or just after eating...  I found that when this happens, I either hadn't been eating enough to power the body as needed, or I had a bunch of toxic junk that I flushed out after eating a specific food, etc...  I have to be careful to eat (and supplement) often enough to maintain energy levels so the detox can continue without bogging me down...

I fully understand the not knowing whether some reaction is good or bad...  I have had to just trust the practitioner, whether it be Dr. D.'s recommendations or my other practitioner(s).  I've had some doozy reactions that were very beneficial for me...


RH-, ISTJ
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TJ
Friday, November 11, 2011, 12:44pm Report to Moderator Report to Moderator

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Quoted from JJR
Another thought I had is it might just be that my body is craving cooked foods more now.
It is getting cooler now.  Cooked food is warmer, temperature-wise, and I suspect it is also warmer energetically.

Quoted from JJR
TJ, I've been off of my seretonin support for over a week now.  And I'm pretty sure that's what making it worse.  I would rather try supps before a drug.  Although if it was bad enough, I'd go the drug route and understand.  But it would be a last resort for me.  You could see if your ND might could prescribe a supp that might help.  But, I totally understand.  We have to function.  Plus I know you don't have a job now.  I pray you find a replacement soon.
I don't have a ND.  The meds are working for me, and I don't want to fix what ain't broken, even though I'd rather not be medicated!

Quoted from JJR
But I do have seratonin support which is: 500 mg of L-TYROSINE and 50mg of L-5 hydroxytryptophan.  Which must be what you're talking about.  So, tonight I'll be adding it back into my regiment and see how it works.  They had me off of it since my last appointment, but now I need it again.
Tyrosine is a precursor to catecholamines.  ABs are like Os in that they have trouble clearing those out.  You may want to do some research on how tyrosine can affect that.
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Kim
Friday, November 11, 2011, 2:44pm Report to Moderator Report to Moderator

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I spent all of yesterday in the ER.  Someone, I am assuming the anesthesiologist, bent my head back beyond where he was supposed to to put in the breathing tube.  I am trying to figure out how to get transcript of the surgery to find out which doctor actually put the breathing tube in.

If I have more damage to my neck, I am going to sue the doctor.  I am on heavy narcotics so that I can even sit up.  You don't have to worry about belly pain from a lap chole when your neck is all screwed up.  

This is the first full day I will be home actually resting.  Trying to eat now.  No foods bothering me but weight went up 6 lbs with 3 days of no food.  Hospital said that was just fluids.  I thought I was going to lose it when I got on the scale and saw that 3 days of just water made me gain 6 lbs.  
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deblynn3
Friday, November 11, 2011, 3:04pm Report to Moderator Report to Moderator

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Are you talking "hospital fluids"?  As in IV ?  If so then your talking sugar  water. If your holding water, once you loose that your neck might get somewhat better.  I sure hope so.

Wishing you a speedy recovery


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JJR
Friday, November 11, 2011, 4:47pm Report to Moderator Report to Moderator

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Quoted from TJ
It is getting cooler now.  Cooked food is warmer, temperature-wise, and I suspect it is also warmer energetically.

I don't have a ND.  The meds are working for me, and I don't want to fix what ain't broken, even though I'd rather not be medicated!

Tyrosine is a precursor to catecholamines.  ABs are like Os in that they have trouble clearing those out.  You may want to do some research on how tyrosine can affect that.


Thank you for the tip!!!


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
Friday, November 11, 2011, 4:51pm Report to Moderator Report to Moderator

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Quoted from ABJoe

JJ,

I've had that reaction - the hot while or just after eating...  I found that when this happens, I either hadn't been eating enough to power the body as needed, or I had a bunch of toxic junk that I flushed out after eating a specific food, etc...  I have to be careful to eat (and supplement) often enough to maintain energy levels so the detox can continue without bogging me down...

I fully understand the not knowing whether some reaction is good or bad...  I have had to just trust the practitioner, whether it be Dr. D.'s recommendations or my other practitioner(s).  I've had some doozy reactions that were very beneficial for me...



I also figured out last night I might be passing a stone.  I had more pain in my groin like I've had in the past when passing one.  And I think when I eat, it may be causing internal pain.  The stomach might move the kidney or put pressure on the area in general.  And my spleen.  That might be a factor.  I'm not completely sure, but my urine was much darker last night too.  It's a distinct possibility because last year at Mayo they told me I had 3 left.  So.....  But what you say makes sense too.  It does seem like it might've been the rush of minerals because I didn't eat real well that day.  It really tasted good too.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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TJ
Friday, November 11, 2011, 9:50pm Report to Moderator Report to Moderator

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I feel royally cr*ppy today... and I thought yesterday was bad.  On the right side, I'm achy from the base of my neck down to my shoulder muscle (deltoid).  My brain was off wandering in space until I roped it in to check the forums.  I'm clutzy and off-balance: I dropped one of my glass casseroles, but amazingly it didn't break, and when I stood up and turned in the same motion I almost lost my balance.  I went to bed around 10 pm, woke up around 3:45 am, went back to bed around 7:15 and didn't wake up again until around 11:30.  I'm in slow motion mode.  I feel lethargic and depressed, and I can't seem to get it together to get anything else done today.

I have to admit, I deal with most of this most of the time in small amounts, but this is not typical.  Is this what I'm really like without the supplements as a crutch???
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JJR
Friday, November 11, 2011, 10:20pm Report to Moderator Report to Moderator

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Probably so.  I know that so many times in my journey dealing with health issues, the supps seem to really fuel me.  But, you may need to lay low for a bit and let the body recoup.  Maybe tomorrow will be better.  Maybe time will tell with patience.  But I realize you have a life to live and that makes it a little tough.  Especially if you have to get up and feed yourself.  Stay strong man, it will get better.  Our bodies want to heal.  It just takes time.  !!!!!!!!!!!!!!!!!!!!


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
Saturday, November 12, 2011, 12:39am Report to Moderator Report to Moderator

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Location: Atlanta, Georgia
Age: 36
Man, we are a really depressing bunch the last few days, aren't we? I think it's funny that TJ and I are both going off our supplements/drugs/whathaveyou at the same time.  I'm spiraling downhill by the hour and it ain't funny.  I'm hardly eating anything.  My appetite is totally 0.  My body hurts.  I'm dizzy and disoriented and I had a friend tell me yesterday that I look awful.   GOOD.  Maybe a doctor will actually take me seriously.  The cramping in my left hand is coming back and it's tremoring a little.  GOOD.  I can't think of words. I yelled at my kids because I was  mad at myself for forgetting what the word "blanket" was.  I couldn't think of it, so I gestured and they totally ignored me.  I glared at DH and said, "I can't think!  They get to be sloppy and messy because I can't THINK!"  He said, "Then go away.  SHOO."  I thanked him and came down here to report my activities to the only people who understand.   I guess they're cleaning up their junk under Daddy's supervision.  'Cause I can't do it. *fume*  I tell you what, people.  As soon as this trip to the LLMD is over with, I'm going back on all my supplements in time to see our inlaws at Thanksgiving.  I can't seem too crazy in front of them.  No, I'm not paranoid at all.  *extra fume*

JJ, you're scaring me.


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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~W~A~R~R~I~O~R~ Defender, Survivor
Kyosha Nim
Posts: 8,156
Gender: Female
Location: Atlanta, Georgia
Age: 36
And my ankles and lower legs hurt really bad.

And I have to tell myself to breathe.

Isn't breathing one of those nervous system responses that's automatic?  I find myself suddenly thinking, "I should breathe now," and I take a deep breath as if I breathed in a while.  I don't mean to hold my breath.  I'm not trying to.  It's just that whatever it is in my brain that's supposed to tell my body to breathe isn't working all that well.  That had gotten better.

Oh, yes, I'll be good and sick by the time my appointment rolls around.  It's been a good reminder for DH to see that our ND really is doing me a whole lot of good. (You know, since he's dishing up the money to see her.)


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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BTD Forums    Diet and Nutrition    The Encyclopedia/ D'Adamo Library  ›  A thread to discuss lyme disease*

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