Omg...i Might Be On To Something

[mftnchn]

That's a good sign Sherry

Yeah, I'm excited! This might be at least one missing piece that will make a difference. I'm trying to remember how many times I've been disappointed and stay balanced though!

[CarlaB]

Carla!!!! OMG, you have kept this from us, you know how we like hearing about this stuff

I guess I haven't said much because I find it so disgusting!!!! I am usually nauseous for a while afterward. Enula is a Cowden herb for babesia. www.nutramedix.com

And when you get your teeth whitened you need Vicodin? Is it painful?

Have you ever had a tooth sensitive to hot or cold? After getting your teeth whitened it's like all your teeth are sensitive to cold and you're sucking on ice cubes. It only bothered me for a short time, but the dentist said normally it bothers people for a few days.

What you said about being told you had a low tolerance of pain really struck a chord with me too.

My mom always said this when I was a kid. If I was, for example, telling a doctor about something, she would whisper this .... or if I was telling her about a problem, she would whisper it to her friend standing there. I guess she thought I was deaf, too, LOL.

My sister just told me that my mom and other sister talk about what a hypochondriac I am and how I finally found a label for my supposed symptoms. Grrr. Yeah, I found a label .... and I tested positive ..... doesn't mean my symptoms are fake.

Anyway, the irony in what the dentist said really made me chuckle.

[confusedks]

How are the infusions going?

They're going well. My skin is having a really hard time with the dressings though. The home health nurse got the kind for extremely sensitive skin, and my skin is still almost bleeding when we change it. No fun.

So far all the labs have been coming back normal, except my hemoglobin is dropping about a point every other week. I think I've been losing too much blood from my period.

My sister just told me that my mom and other sister talk about what a hypochondriac I am and how I finally found a label for my supposed symptoms. Grrr. Yeah, I found a label .... and I tested positive ..... doesn't mean my symptoms are fake.

Ugh, that pi**es me off! That's what I'm worried my dad will think when he watches Under Our Skin...that I've found "others" like me.

[CarlaB]

Ugh, that pi**es me off! That's what I'm worried my dad will think when he watches Under Our Skin...that I've found "others" like me.

Be glad you have found others like you.

Yeah, makes me mad, too. I didn't make my mom prove she had cancer, why can't she just believe me? Of course, this is exactly the reason I broke off communication with her .... she talks bad about me behind my back. I guess some people have to talk bad about others so they can feel better about themselves.

Still, it doesn't feel good to know your own family just plain doesn't care.

[mftnchn]

Be glad you have found others like you.

Yeah, makes me mad, too. I didn't make my mom prove she had cancer, why can't she just believe me? Of course, this is exactly the reason I broke off communication with her .... she talks bad about me behind my back. I guess some people have to talk bad about others so they can feel better about themselves.

Still, it doesn't feel good to know your own family just plain doesn't care.

Carla that's really sad that they treat you like that. They are missing out on a relationship with a fine person.

I keep a bit of distance with my parents, too. Not so much the same issue, mostly there is just some missing pieces of emotional support and I get pulled into emotional emeshment. I figure there is some talk behind my back but don't know if it is positive or negative; I try not to think about it.

It comes up more when I am in the USA, LOL!

Sherry

[Nanjkay]

Band 31 is very significant and specific to Lyme. Your is not positive, but it is not negative either. My LLMD treated my daughter on results like that because she had a few symptoms as well .... and not as many symptoms as you have. With her reaction to abx treatment, we had a confirmation of Lyme. She was treated with abx and herbs for 8 months .... she has been off the abx since Jan. but still takes herbs.

An LLMD is a Lyme Literate MD.

Thanks all again- I can't tell you how much better you all make me feel... information is power, and you all have tons of info. but also I don't feel so alone and that is more important than anything.

Carla and everyone-

How did you find your LLMD. After I googled what LLMD meant (thanks for telling me, though), i did a search for my area. I am in Central/Northern NJ. I could go into NYC if I had to, but would rather stay local. Any recommendations for the search?

Carla- good news about your son and interesting about your daughter. Is she doing better?

Also, I have a friend who owns a health food store, rather, he became a friend because I am in there so much. He showed me this new book about lowering vitamin D to control Lyme flare ups. Has anyone heard of this book or theory? He has Lyme and gets a flare up every early summer, when he gets more sun exposure here on the East coast. I'm wondering if I should stop my vitamin D supplementation until I know more.

Nancy

[Nanjkay]

Carla that's really sad that they treat you like that. They are missing out on a relationship with a fine person.

I keep a bit of distance with my parents, too. Not so much the same issue, mostly there is just some missing pieces of emotional support and I get pulled into emotional emeshment. I figure there is some talk behind my back but don't know if it is positive or negative; I try not to think about it.

It comes up more when I am in the USA, LOL!

Sherry

Sherry and Carla-

I can relate to both of you. I recently saw an e-mail my Mom wrote to my brothers about me (we were dealing with my Dad's finances, long story), and she wrote some pretty mean. shallow things about me.

I am going through much of the same with my Mom. I love her more than anything but she will never understand, or can she understand what it is like to ALWAYS feel badly in one way or another and how our emotions are affected. She recently had cancer and cried to me that she felt like she was dying. I drove and picked her up, prepared her gluten-free meals for a few weeks...gave her all the compassion in the world, because i know that is how I wish I were treated when I am feeling awful. I also think they resent us for being sick. Just as people get mad and impatient with their aging parents as it is hard to watch. However, my Mom is also very intolerant of my bad and sad days and that only worsens the problem. I end up feeling like a leper. I finally had to accept that she is not a reliable place for comfort and unconditional compassion for me and it is easier not to see her. But accepting this fact is very sad for me.

I guess this is a common problem with family.

Nancy

[mftnchn]

Nancy,

I recently did a couple days worth of study on the Marshall protocol which is the approach that espouses the idea that you should lower Vitamin D.

Although it seems some people respond to this approach, it seems better for sarcoidosis patients, and it is a stretch to apply to others. I decided the approach was not safe, and was concerned about a number of things I read about the author of the approach and the way people on their forum can be treated. There is a squelching of anything that questions the dogma of the approach. Also some people have been much worse on this approach, apparently, but that is not allowed to be referred to on the protocol website.

I've actually chosen to take an opposite view--that I need to increase my D levels. I'm still in process with that, but the 3rd day after tripling my supplementation to 6000/day, I felt almost back to normal and had a full day of work at home after over three weeks of illness. I had almost no herx symptoms after taking the D today.

I'm to hold at 6000 until the 30th when I have the levels checked to see where I am at.

Let me know if you want to study this further and I'll send you a link of someone who researched all the science of the approach and discusses all places where the science doesn't add up.

You should also know that the approach was developed by an engineer using computer simulation, not by a doctor using clinical approaches. However, it seems the author is a sarcoidosis patient and has really improved on the approach.

I also discussed this with my LLMD, who first brought up the Marshall approach to me. He also said he had come to a similar conclusion as I had and was glad I had decided not to try it.

This is my own conclusion though...you may wish to study and draw your own.

Sherry

[mftnchn]

Nancy, I'm sorry about your Mom, that is so sad. My sister and I have talked about how we are trying to make new choices that leaves a different legacy to our own children. Break the cycle so to speak, and move the family system toward health.

Sounds like your kindness to your Mom was a pure gift, and hope that as the giver, you are blessed.

Sherry

[CarlaB]

Carla that's really sad that they treat you like that. They are missing out on a relationship with a fine person.

It comes up more when I am in the USA, LOL!

LOL about the USA. My mother and sisters are in TX, so the drama is far away, but not as far away as yours, LOL.

Thank you. I actually stopped communicating with them a couple years ago. They have always done this and as I got sicker I was unable to handle it anymore. You guys probably know the "real" me better than they ever have.

How did you find your LLMD.

A local friend got diagnosed with Lyme about the same time I did (interesting story, we were both sick and neither knew the other was being tested for Lyme). I went to her Dr. because Dr. J, the famous children's Lyme pediatrician in CT recommended him to her.

My Dr. is in NY ... I fly there from Ohio. There might be docs in NJ, post under seeking doctors on LN and someone will send you names. Remember though to ask if anyone has been to these docs as not all LLMD's are as good as the next. The people who answer probably are looking at a list.

Carla- good news about your son and interesting about your daughter. Is she doing better?

Yes, she is. I still am concerned about her monthly flares during menstruation and yesterday she was tired and grumpy, but she may just be overtired from staying up later. She is on the Cowden Protocol right now.

Also, I have a friend who owns a health food store, rather, he became a friend because I am in there so much. He showed me this new book about lowering vitamin D to control Lyme flare ups. Has anyone heard of this book or theory? He has Lyme and gets a flare up every early summer, when he gets more sun exposure here on the East coast. I'm wondering if I should stop my vitamin D supplementation until I know more.

I came to the same conclusions as Sherry.

I think when you are getting sunshine your immune system works better and you feel worse because it naturally kills off the Lyme. That's my personal theory .... I've put this in remission three times with sunshine, rest, and exercise. Those three times I was not as sick as this time.

I guess this is a common problem with family.

Nancy

I think so. I also think it is very common in those with chronic illness. We've discussed on the thread before that there is an emotional component to disease that needs to be addressed. Even the CDC recognizes this component.

My sister and I have talked about how we are trying to make new choices that leaves a different legacy to our own children. Break the cycle so to speak, and move the family system toward health.

That is what Adam and I are doing, too. My daughter was at the same place as my mother and sister last year. She came home and asked how her dad and I knew to raise them because she could tell it was totally different than I was raised.

[dlp252]

How did you find your LLMD. After I googled what LLMD meant (thanks for telling me, though), i did a search for my area. I am in Central/Northern NJ. I could go into NYC if I had to, but would rather stay local. Any recommendations for the search?

I live in the same area as Rachel, so I went to all her doctors. You can ask on LN too.

[dlp252]

OMGosh...I had the strangest dream last night, lol. A little background...I have an appointment next week with Dr. R my GI. This is a followup to the enlarged ampulla thing from a couple of years ago. I don't know if he'll be willing, but I want him to do another endoscopy to check the growth. Okay, so my dream. I dreamt that while he was in there he found villi damage and I was officially diagnosed with Celiac, lol. I was so darned excited, you'd think I'd won the lottery, but then I was shocked and sort of bummed out. What the heck is that about, lol. Maybe deep down in my subconscious I am hoping the sensitivity is from lyme/metals/mold and will go away, lol.

[AndreaB]

My mom still doesn't believe my amalgams are behind my health problems, or a part of them. She's not fighting me openly about this though and I don't know whether she has talked to anyone else. She believes what she's be told (and read recently in the paper) that you just get them replaced as needed.

Still reading along for the most part. Feel better energy wise but still have a low grade fever and I'm getting tired of it. T and I have been the worse through this, just hoping it goes away soon......

[AndreaB]

Donna,

I don't think I'd push it with having a celiac gene......

[dlp252]

Aw Andrea, sorry you're still not feeling well! I have been thinking of something that might at least cheer you up...I'll PM you today or tomororw.

[Nanjkay]

L

A local friend got diagnosed with Lyme about the same time I did (interesting story, we were both sick and neither knew the other was being tested for Lyme). I went to her Dr. because Dr. J, the famous children's Lyme pediatrician in CT recommended him to her.

My Dr. is in NY ... I fly there from Ohio. There might be docs in NJ, post under seeking doctors on LN and someone will send you names. Remember though to ask if anyone has been to these docs as not all LLMD's are as good as the next. The people who answer probably are looking at a list.

Hi--

I can't tell from the thread who lives in Ohio but flies to NY to see their LLMD? I live in NJ...where in NY is this doctor and could I have his/her name if that is OK? And what is LN?

nancy

[dlp252]

Sorry, lol, LN is LymeNet...there is a whole forum for seeking a doctor. We don't post the doctor's name on the forum, but someone can send you a private message or email with names.

Here is a link to the LN forums: Open Original Shared Link

[CarlaB]

I sent a PM to Nancy.

[Green12]

My mom always said this when I was a kid. If I was, for example, telling a doctor about something, she would whisper this .... or if I was telling her about a problem, she would whisper it to her friend standing there. I guess she thought I was deaf, too, LOL.

My sister just told me that my mom and other sister talk about what a hypochondriac I am and how I finally found a label for my supposed symptoms. Grrr. Yeah, I found a label .... and I tested positive ..... doesn't mean my symptoms are fake.

Anyway, the irony in what the dentist said really made me chuckle.

Thanks for the info about the enula, I had forgotten And thanks for explaining the discomfort that comes after the tooth whitening, makes sense.

I understand what you went through growing up, my situation is just a little different in that I was always told and talked about as being "sensitive", and for many it hasn't been such a surprise I am sick, which pisses me off.

Just because someone is sensitive doesn't make them weak or not strong. I actually have a strong constitution and a very high tolerance for pain, and I suspect we all do. Most all of us have dealt with and continue to deal with a lot of physical pain with a lot of our symptoms and we get through it and endure.

I'm sorry you have had to deal with all of this Carla with your mom and sisters Sherry said it well, they are definitely missing out.

They're going well. My skin is having a really hard time with the dressings though. The home health nurse got the kind for extremely sensitive skin, and my skin is still almost bleeding when we change it. No fun.

So far all the labs have been coming back normal, except my hemoglobin is dropping about a point every other week. I think I've been losing too much blood from my period.

Glad they are going well Kassandra, other than the trouble you are having with the dressings. OUCH!

Yay on the labs, hopefully the hemoglobin will normalize.

Still, it doesn't feel good to know your own family just plain doesn't care.

No, and that is what sucks. You would think your family would care, they are supposed to! But that unfortunately isn't always the case. I love that saying, you can't pick your family but you can pick your friends. Friends can become famly.

Glad you have such a wonderful husband and children!

ANd yes Kassandra, finding people just like you are the best people to find

I keep a bit of distance with my parents, too. Not so much the same issue, mostly there is just some missing pieces of emotional support and I get pulled into emotional emeshment. I figure there is some talk behind my back but don't know if it is positive or negative; I try not to think about it.

It comes up more when I am in the USA, LOL!

Not you guys too Sherry and Nancy, makes me sad to hear

My sister and I have talked about how we are trying to make new choices that leaves a different legacy to our own children. Break the cycle so to speak, and move the family system toward health.

That is what Adam and I are doing, too. My daughter was at the same place as my mother and sister last year. She came home and asked how her dad and I knew to raise them because she could tell it was totally different than I was raised.

This is wonderful Sherry and Carla, so often these patterns of behavior are passed down from generation to generations so it's great to hear the cycle is being broken

What the heck is that about, lol. Maybe deep down in my subconscious I am hoping the sensitivity is from lyme/metals/mold and will go away, lol.

What the heck does it mean?!?!?!?

Sorry Andrea about your lingering fever, and poor T too Hope you guys get better soon

[aprilh]

I guess I haven't said much because I find it so disgusting!!!! I am usually nauseous for a while afterward. Enula is a Cowden herb for babesia. www.nutramedix.com

Have you ever had a tooth sensitive to hot or cold? After getting your teeth whitened it's like all your teeth are sensitive to cold and you're sucking on ice cubes. It only bothered me for a short time, but the dentist said normally it bothers people for a few days.

My mom always said this when I was a kid. If I was, for example, telling a doctor about something, she would whisper this .... or if I was telling her about a problem, she would whisper it to her friend standing there. I guess she thought I was deaf, too, LOL.

My sister just told me that my mom and other sister talk about what a hypochondriac I am and how I finally found a label for my supposed symptoms. Grrr. Yeah, I found a label .... and I tested positive ..... doesn't mean my symptoms are fake.

Anyway, the irony in what the dentist said really made me chuckle.

UGG! So frustrating our families can be!

I am wondering if I have some kind of parasite problem. I might try the humaworm - even though it really made me feel bad last time.

[confusedks]

My mom is forcing me to go to my OB/GYN. I don't want to see a "normal" doctor. I'm afraid of getting harassed by her about Lyme. And, I can't really avoid it because I'm on SO many meds, including IV's, so she has to know.

Ughhhhh. I wish Dr H would call me back so I wouldn't have to go see the gyno.

[AndreaB]

I'll be hoping for the best Kassandra. If you have to go in maybe she'll surprise you and not bother you about the lyme.

[Green12]

UGG! So frustrating our families can be!

I am wondering if I have some kind of parasite problem. I might try the humaworm - even though it really made me feel bad last time.

Hi April, how are the chiggers??

My mom is forcing me to go to my OB/GYN. I don't want to see a "normal" doctor. I'm afraid of getting harassed by her about Lyme. And, I can't really avoid it because I'm on SO many meds, including IV's, so she has to know.

Ughhhhh. I wish Dr H would call me back so I wouldn't have to go see the gyno.

Oh no Kassandra! I hope Dr H calls you back in time. If not and you have to go just stand your ground, don't let them intimidate you, and just deal with the gyn issue you are there for.

But like Andrea said, maybe they won't make a big deal about it.

[Guest tamedandfoxed]

Kassandra I wish you could go see the gyno i saw a few weeks ago, she was the best! first real doctor who's ever actually LISTENED.

[mftnchn]

That is what Adam and I are doing, too. My daughter was at the same place as my mother and sister last year. She came home and asked how her dad and I knew to raise them because she could tell it was totally different than I was raised.

Now there's some feedback!!! Yay! Kudos to you both.

Sherry