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A thread to discuss lyme disease*  This thread currently has 174,165 views. Print Print Thread
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Ribbit
Saturday, August 27, 2011, 2:54am Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from Kim


  The science talks about biting flies and mosquitos transmitting lyme.  Lyme, a distant cousin to syphllis, has some doctors believing the spirochetes are sexually transmitted.  


That's not the first time I've heard that.  DH told me it was like syphilis.  He e-mailed me a controversial article about it.


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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Quoted from Kim
With Babesia, you may experience weight loss or weight gain.  


I have only read that weight loss is a symptom.  But I have had to deal with weight gain as well, and it makes sense because the bacteria attacks your thyroid just like it attacks everything else, bringing down its function....and causing you to gain weight.

When I read through the insanely long list of Lyme symptoms, there are only four that I don't have: weight loss, hair loss, Lyme "rage" and sensitivity to alcohol.  I have every neurological symptoms possible, although with herbal/homeopathic supplements and a mostly raw diet, they have greatly diminished.

I still wish I could think, though.

JJ, when I get to where I can't think of a word (which only happens when I'm talking, not when I'm typing, oddly enough), I picture it in my mind--the object, then the word written.  After I picture the written word, I can read it and then say it.  I know that sounds silly, but if you try it maybe it'll work for you too.  And it's only with nouns.  I don't have trouble thinking of adjectives or adverbs or anything else although I have been known in the last year to mix up pronouns.

I believe my Vagus nerve is a problem too.  I learned about it from Paul Clucas when we were talking about ADD and super-sensitive ears.  Now I know that the nerve runs the entire length of your body and is responsible for a good many things.  Fish oils and B vitamins have helped.  I also wear an ear plug in my left ear now (the sensitive one) and it helps me relax.


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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nowishow
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Quoted from Ribbit



JJ, when I get to where I can't think of a word (which only happens when I'm talking, not when I'm typing, oddly enough), I picture it in my mind--the object, then the word written.  After I picture the written word, I can read it and then say it.  I know that sounds silly, but if you try it maybe it'll work for you too.  And it's only with nouns.  I don't have trouble thinking of adjectives or adverbs or anything else although I have been known in the last year to mix up pronouns.




That's what I do too!  


"Anxiety is the gap between now and then"

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JJR
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Kyosha Nim
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My symptoms of a gummed up spleen is pain on the left side of my rib cage.  It feels the same as kidney pain, I think.  And my blood has been thicker lately.  I know this because I need Vitamin E regularly now.  I was off of that for a long time.  

Thanks for the tip on the word thing.  I'll have to try that.  Yeah, I usually have less problems while typing.  Every once in a while I'll be at a loss for a word, but it's a lot more rare.  Some days it feels like I walk around searching for words to communicate.  It's not horrible, but it's there.  But my wife says she gets that sometimes too.  

This thread has been sooooooo good.  Because it has really made me feel at home with my symptoms.  I don't feel alone and it explains why I feel like I do.  Instead of the big question hanging over me.  Before it was always a big mystery as to why I was going through this.  I don't know if it really makes it any easier, but I feel, safer knowing what the cause of my problems are.  Or I'm sure at least a large part of it.  I mean we've had our house tested for Mold, which this last test the guy said it was really really good.  The only stuff that showed up was the same stuff as outside in such a small amount that he said you can't get away from what's outside.  We try and eat the most pure foods, water filters, etc etc.  This diet.  And despite my strictest efforts, that wasn't necessarily fixing me.  It helped, and I'm sure if I didn't do all that stuff, I'd be worse off.  But grasping at straws, trying to figure out why I feel like I do, has been no fun. Now, I see that other people have the same exact symptoms.  Or may be a little different but some are exactly the same, and I just feel more relaxed about it in my mind.  

I'll bring up another symptom, I have noticed at the New Moon, it seems to affect me more.  I've brought this up in other threads.  But I didn't sleep real well last night, and the New Moon is Monday.  And usually my digestion takes a hit around the time of the new moon.  Meaning I'm not as hungry and I seem to struggle in the gut more.  It seems opposite, as others say the Full Moon may mess with them.  But for me it's the opposite.  


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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Lola
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JJR
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I haven't finished watching it yet.  It's kind of a lot to take in at once when you know you have it in your 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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Ribbit
Monday, August 29, 2011, 2:28am Report to Moderator Report to Moderator

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Kyosha Nim
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Yeah it is, JJ. We watched it several months ago and Rob and I just sat there and thanked God that I'm not as bad as I was a year ago.  I'm also thankful we've been on this diet as long as we have been.  I knew 6 1/2 years ago, before I had a name for it, that the diet threw "it" into remission.  I remember telling Rob that.  That "it" was better than it had been in a long time.  I'm glad I have a name for it (thanks to Chloe's patience explaining it to me more than once!) so I can figure out what to do from here.

I often wake up during the night and first thing in the morning with pain in a particular rib on my left side.  It's been that way for years.  It's in the back, not the front.  I just assumed it's from having a mattress that's not comfortable.  I have learned to sleep with multiple pillows tucked in every-which-way to relieve the strain on my joints and ligaments during the night.

I keep injuring my joints, and now I know why.  I complained to my chiropractor recently that my wrist hurt (the one that hasn't stopped tingling since my paralysis episode last summer), and he felt around...and then felt around my elbow and shoulder and knee and ankle (because I'd complained about them too) and he said, "The tendons around your joints are thin and not developed--they're child-sized.  It's almost like they didn't form completely."  I was so glad he said this to me because I always KNEW something was wrong, but no doctor/chiropractor had ever confirmed it!  I knew I always wore out too fast, had no endurance, and got hurt more than anybody else.  My mom made me wear high-top sneakers for years because my ankles were so weak I kept spraining them.  We should have known something wasn't right.  Anyway, my assumption now is that the Lyme bacteria in my joints at such a young age kept  my ligaments from forming like they should.  I'm not little--I'm 5 ft 6 1/2 inches tall and I currently weigh just over 125. Yes, seriously--I amazingly lost all the weight I was holding onto after the last baby was born, that I never thought I would lose because of my inability to exercise.  But my wrists are very small--5 1/2 inches around--and every joint in my body snaps and crunches.  They always have.  The joint/ligament issue paired with the muscle jumps, left arm jerks and left ear flutters ... and my severe pelvic organ prolapse....and you've got one body over here coming apart at the seams.  It all makes sense.  All my health issues over all these years finally make sense.

Thanks for letting me talk, y'all.

Now I have a question for you ladies.  If you had Lyme during pregnancy, did you have a particularly rough time of it?  Did you have rashes on your belly?  I'm not prone to rashes, but when I'm pregnant, I get a blotchy rash all over my belly.  The president of the GA Lyme Disease Association said pregnancy seems to cause bacteria flare-ups in some people, and that one of the symptoms was a tummy rash.  I gasped when she said that, because my doctors and midwives never had an answer.  They said it was heat rash, but I didn't believe it.  Were you unusually nauseated?  Did you have unusually severe postpartum depression?  Did it take forever for you to get to feeling normal again after a baby was born?


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
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Oh I had all of those symptoms.  (referring to the pregnancy stuff, which of course I'm joking!!)

Man Leanne, just man.  God has to be powerful in you.  Keeping you held together.  I just pray he keeps keeping you together and healing you.  He hears our prayers.  I know it.  

And yeah, that pain is probably your spleen.  Or kidney.  But I'm guessing it's your spleen.  The gal at my doctors office says that's what Lyme does. It could either be attacking it, or it just gets gummed up so bad because your body is trying to clear the dead stuff your body is killing, which is in large amounts.  Or something like that.  I remember one time I went into the ER with so much pain in my whole upper torso.  This was probably over 2 years ago.  Elizabeth can attest to this, the pain sort of went from my whole upper body and zero'd in on that left side.  AND, that left side of my back was hotter and redder than everywhere else while I was in the ER.  I bet my spleen was messed up bad that time.  They said it was fine, but my pain said differently.

Are kidney stones a sign of lyme?  Because I had a few of those and of course no one ever knows why with them.  Although that might have been something else my body brought to the party.  When I was a young man, I barely ever drank water and had an outside job, sweating all the time.  I drank lots of soda though, and I'm sure that could've done it.  And having Genetics that they lack glutathione doesn't help I'm sure.


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
Monday, August 29, 2011, 1:26pm Report to Moderator Report to Moderator

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In the Under Our Skin documentary, I am like Dana....with pain, pain, relentless pain!!!  I have fatigue too, but I am in so much pain all the time.  One day, my ribs feel like someone is trying to break them in two, then the next day, I can hardly walk my knees and hips hurt so much.  There are days, I can't lay my head against my pillow because the nerves in my neck and back of my scull are so sensitive to pain.  I get leg pain that feels like someone is breaking my legs.  I don't know how I do this day in and day out.  I use pain meds sparingly when I just can't take it anymore.

I see my LLMD this Thursday.  He is one of the doctors featured in the documentary.  I am thinking about using the website Caring Bridge to document my treatment.
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JJR
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I'm so sorry about your pain.  Is that the girl that toured with U2?  

Does anybody have the floating stool symptom?  I've been having it this year.  It might be linked to the fact that I stopped eating cultured vegetables and my gut flora just isn't working that well.  Or, some people say it's a sign of parasites.  But, it's been worse this year than I remember.  It will go away sometimes but it's been pretty consistent and I know it's a sign of something not completely right in the gut.  Which I already know is an issue, but this didn't used to happen.  So I'm not sure why it's doing it.  Thank God my bowels still seemed to moving at least.  I would hate them to be stopped up.  But yeah, I became really sensitive to anything cultured or fermented.  I can't decide if it's because they're killing stuff and it just makes me feel bad, which I know they can.  Or, if I have some kind of problem with fermented foods.  Somebody on here said people can have problem with high histamines, and fermented foods have lots of histamines.  Or something like that.  So I just quit them all together.  But I know at one time they had helped me a great deal.  But I just get this feeling I need to cleanse and support, instead of kill.  Except for the lyme stuff.  I'm killing that.  


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
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It seems that sometimes I am affected by the moon (new or full) but not always so I don't know if it's a coincidence. I am having a pretty bad day today. Last week was excellent (relatively). Babesia seems to run on a three week cycle with me.

I've never had a baby so I can't answer to the pregnancy questions.

JJR - Do you know what kind of kidney stones you have? Uric Acid type or other? I think Uric Acid type can be caused by soda.

I've never had the floating stool, but for a while it seemed like I had extremely heavy stool! Lead poop!   Maybe I was getting rid of metals?

Kim - I really related to Dana as well. So much pain! I was grateful for her story.

I'm also grateful for this thread. I belong to another group (Buhner Lyme group), but none of them eat this diet so it's easier for me here. It makes me feel so supported and not alone.

Thanks everyone!


"Anxiety is the gap between now and then"

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Kim
Monday, August 29, 2011, 9:19pm Report to Moderator Report to Moderator

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I belong to three other Lyme groups and the conversation always revolves around what the best diet is for someone fighting Lyme/coinfections.  I always provide the link to Dr. D.  
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JJR
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Another gal I know is fighting it and she was talking about the diet they told her to eat.  I should ask her what it is.


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
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Quoted from JJR
Another gal I know is fighting it and she was talking about the diet they told her to eat.  I should ask her what it is.


Most talk about avoiding grains, dairy and sugars.  
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Ribbit
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Huh. The Lyme forums I've been on revolved solely around what antibiotics everybody was taking.  When I started talking alternative stuff, nobody was interested.     I quit posting on them.

I know you can't smear your entire body with BioFreeze, but I have found that 1. total avoidance of nightshade plants and 2. topical use of BioFreeze--has helped with my pain.  I don't have the stabbing pain I had last summer.  Every so often I'll have a "low" day, but it's nothing like it was.  I'm still disoriented and maybe I'm not doing as well as I think I am, but I'm not as bad as I was a year ago--that's all I can say.

Yes, JJ, God's not done with me yet.  I've got kids to raise.  


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
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There are a lot of people using just homeopathics for Lyme and then there are some like me that plan to use both fòr treatment.  I won't wait for just homeopathics to work when neurological issues are getting severe.  I plan to use both.  I will be starting with IV antibiotics and finishing up with homeopathics.  I have been sick a very long time and my husband is sick with Lyme too.

There is a good mix of both types of treatments on the groups I belong to.  We all respect what each person does for their treatment.  There is not a universal Lyme treatment.  Coinfections complicate everything.

I have used biofreeze before, but I would have to soak in it.  I have horrible muscle burning all the time.  
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nowishow
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Quoted from Kim
I belong to three other Lyme groups and the conversation always revolves around what the best diet is for someone fighting Lyme/coinfections.  I always provide the link to Dr. D.  


What groups do you belong to?


"Anxiety is the gap between now and then"

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JJR
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Quoted from Kim


Most talk about avoiding grains, dairy and sugars.  


Yeah, those are the hardest for people to give up I think.  This gal was a religious coke a day drinker and she actually gave it up.  I gotta check in with her.  

Ouch, my spleen is twinging as we speak.  Maybe it's getting cleaned out. I can only hope!!! Hehhehehe


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
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Quoted from nowishow


What groups do you belong to?


The one I help out on is lymenet.org.  I also belong to lymefriends.org which is not a very active site but still good for information.  The last one I read but really don't participate in is mdjunction.com. The information is okay but there can be some drama on that site.  

I stay mostly on lymenet.org which I think is the best one.  
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Ribbit
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JJ, I explained to Rob where my pain is in the mornings and he said that was my kidney area.  But it's not really inside me--it's a rib.  So I think that rib hurts because I have a couple of bulging discs and they're annoyed by me sleeping.


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
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Yeah well, I mistook my kidney pain for the spleen for a long time.  Or, it may be both.  I have no clue what's hurting on you.  ABJoe says that's one of the main reasons he goes to the ND, to see what organ their machine says is struggling.  It's hard to tell.  Spleen, Kidney, Back, whatever it's all messed up.  I get the same thing too because I sit more than I should and I slouch.  I'm a sloucher and my lower back will sometimes get sore.  Monday was the first day in a while that I actually did some stretching in the morning!!  

So, I can't help you on what organ or part is hurting.  But I'm just saying it's possible it's your spleen.  It has to keep up with filtering the blood out.  For me as a Nomad, Dr.D talks about it being an issue also.  Along with the Kidneys as an Explorer.  Hehehehe  

Have you eaten any Watermelon or Asparagus lately?  Or dandelion greens or collard greens or something like that?  


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
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Quoted from Kim


The one I help out on is lymenet.org.  I also belong to lymefriends.org which is not a very active site but still good for information.  The last one I read but really don't participate in is mdjunction.com. The information is okay but there can be some drama on that site.  

I stay mostly on lymenet.org which I think is the best one.  


Thanks Kim!  


"Anxiety is the gap between now and then"

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nowishow
Wednesday, August 31, 2011, 6:11pm Report to Moderator Report to Moderator

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Quoted from Ribbit
JJ, I explained to Rob where my pain is in the mornings and he said that was my kidney area.  But it's not really inside me--it's a rib.  So I think that rib hurts because I have a couple of bulging discs and they're annoyed by me sleeping.


It could be the cartlidge around the ribs. I have some rib pain as well and that's what my doctor said it was. But who knows...


"Anxiety is the gap between now and then"

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Kim
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Tomorrow is my 3 hour appointment with my LLMD. I have waited two months for this.  I have to leave my house at 6 am to make it to DC for an 8:30 am appt.  Lots of traffic in the am in the DC area.  

If you have watched the documentary "Under Our Skin", you would have seen my LLMD speak in the documentary, he is Dr. Jemsek.  

Will post an update tomorrow afternoon.
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Age: 39
Quoted from Ribbit
I keep injuring my joints, and now I know why.  I complained to my chiropractor recently that my wrist hurt (the one that hasn't stopped tingling since my paralysis episode last summer), and he felt around...and then felt around my elbow and shoulder and knee and ankle (because I'd complained about them too) and he said, "The tendons around your joints are thin and not developed--they're child-sized.  It's almost like they didn't form completely."  I was so glad he said this to me because I always KNEW something was wrong, but no doctor/chiropractor had ever confirmed it!  I knew I always wore out too fast, had no endurance, and got hurt more than anybody else.  My mom made me wear high-top sneakers for years because my ankles were so weak I kept spraining them.  ...But my wrists are very small--5 1/2 inches around--and every joint in my body snaps and crunches.
Wow, I sure can identify with that.  Although I didn't sprain my ankle until I was 29 -- even though I rolled them often, they were so flexible, and my reactions to shift my weight away from that side, that they never sprained until I stepped on a rock while carrying a heavy toolbox.   I also feel like my muscles and joints aren't put together very sturdily.
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