Omg...i Might Be On To Something

[happygirl]

x

[rinne]

Patti, sorry to hear about your experience with the zoloft, sounds awful. Have you ever tried Rescue Remedy, I think it is a Bach Flower Remedy. There is also a tea I have drunk, Tension Tamer, which is surprisingly effective. How are your B12 levels?

Besides the pain and weight loss this past year, I have begun to notice a kind of fearfulness about encountering the world which is unlike me and it has made me suspicious of the ways in which Lyme manifests as dark thoughts. Now I study those thoughts more thoroughly and I see how much I participate in the reality that arises out of those thoughts.

Celiac may also do the same kind of damage and given I have a brother and sister diagnosed with Celiac, what are the odds? (I've been hoping for gluten intolerance just so my sweetie could have treats in the house with gluten.)

I'm thinking about my sauna experience. The handle of the door was the trigger that said "slide me open" and I was in that mental loop for that minute of, am I locked in.... So, every moment there are triggers and loops and what is really going on? Is the door locked or can it be gently pushed open?

One symptom of Lyme is the feeling that we are losing our mind. Think about it, it is literally true, once the bugs establish themselves they can do all sorts of things like turn our body temperature down because they like the cold. They can turn us into clumsy fools that ride straight into telephone poles.

[AndreaB]

The doctor said she could prescribe something else, but this scared me so much that I'm going back to the drawing board to try and come at this in a more natural way.

I have begun using my treadmill again--I used to be able to hop on and do a mile in no time. This time around, I'm working up from 3 minutes. I've also re-started Pilates.

I still think all I have going on is a case of long standing Celiac and a very leaky gut. I think the only answer for me is to be "patient" forever.

Your med reaction sounds scary.

I think you have a good plan and excercise is supposed to help us feel better. If excercise can help with anger, stress releaser etc I would think it would have a soothing effect for you.

You're doing good Patti. Look at how far you've come already.

[jerseyangel]

Your med reaction sounds scary.

I think you have a good plan and excercise is supposed to help us feel better. If excercise can help with anger, stress releaser etc I would think it would have a soothing effect for you.

You're doing good Patti. Look at how far you've come already.

Thanks Andrea

I have come a long way, and I do need to keep that in mind!

I wasn't going to mention the Zoloft debacle here, but I kind of felt like I was hiding something. Strange, but we all just tend to share everything with regards to our health.

I'm sticking with the treadmill--but like I said, I have to build back up my time. Just talking about this with my husband and others like you guys helps, too. I kept a lot of this stuff to myself for a long time, and it feels good to be open about it.

I plan to try the tea Rinne suggested.

[AndreaB]

I am going to look today for the results from igenix if I can't find my copy I am going to get it from my doctor. I might post them here or at least compare them to ours and rinnes so I can get an idea of what they mean. I am anxious to do this but my test results are at my parents so Ia m going to have to head over there later and look though them - I hate waiting.

Hope you have a successful and refreshing time over at your parents.

[Rachel--24]

Do you have a built in stereo system with speakers through the house or an actual stereo in various rooms of the house?

We have built in speakers only in one room of the house. I just have stereos everywhere....cuz I love music.

In the kitchen I have one of those under the cabinet ones with a celiac disease player. I installed it under the cabinet....like those can openers that you can put under the cabinet....its like that. Its actually got great sound...I probably use it more than any other stereo in the house.

[CarlaB]

Patti, I take St. John's Wort, but if you're on other prescriptions, check with your pharmacist for interactions. A friend of mine who didn't know I had started taking it noticed a difference with me a few months into it, enough that she mentioned something.

Like Rhonda and Patti have mentioned, I don't like the personality changes that have come with this. Even though I've dealt with chronic illness for YEARS, ever since I got an infection in my lungs four years ago and was on doxycycline for 21 days, I've been much sicker. Every other time I've been really sick, I've pulled out of in in about four months time. This time I can't. I get a certain amount of fear when I go out just because sometimes when I'm out I get so disoriented that I get upset. I've always been one to try new things, go new places, etc. I'm not now. I also used to love to be around people in social situations, now I feel so disconnected that unless I really know them, I don't want to be around them. It's too hard to get to know new people when it's such an effort just to remember their name and face.

Rhonda, even though your last post was silly and completely funny, it's so appropriate and sad at the same time. That describes me perfectly. My dad lives in Florida and said if my body temp. was so low, would it help to move down there? I said it didn't really matter because Adam's job up here is impossible to duplicate ....

Mia, I'm glad your eos test came out negative even if it means no diagnosis from Santa this year. Maybe Santa would be better able to diagnose all of us ... doesn't seem like medicine can.

I have a question about this eos. Doesn't it seem that there STILL would be something underlying it that would be causing this immune reaction and all these sensitivities? Isn't it like fibro or CFS in that it seems to describe a reaction more so than the underlying problem? Even though you could feel better off all the foods you are allergic to, wouldn't there be something causing these sensitivities? Or is it like celiac in that it's triggered and never goes away? Laura, I'm thinking about you with these questions. Maybe you're part of the Lyme clan, too. Not that all of us have it .... but it just seems weird that you would all of a sudden be allergic to food.

[Rachel--24]

How long ago was this? I don't remember if I commented on this or not.

The moldy peach smell was something I was noticing before I got sick. It was bothering me alot....making me want to puke. It was during the 2 years that I most likely already had Lyme but wasnt really sick yet. I felt fine and didnt have any sensitivities yet....but the peach thing was out of the ordinary.

The thing is...as time passed it seemed like the smell got even WORSE. Of course to a "normal" person this wouldnt make sense and so it just seemed as if I was just being difficult...wanting to drive my own car all the time.

What are you dancing to Rachel?

I was dancing to latin music...on Saturday nights the radio station broadcasts from a club. Thats what I listen too....dance/club music. I probably listen primarily to latin music, sometimes a little country (if I'm feeling mopey), sometimes hip-hop, sometimes old school, occassionally some classic rock. It depends on my mood.

[AndreaB]

I have a question about this eos. Doesn't it seem that there STILL would be something underlying it that would be causing this immune reaction and all these sensitivities? Isn't it like fibro or CFS in that it seems to describe a reaction more so than the underlying problem? Even though you could feel better off all the foods you are allergic to, wouldn't there be something causing these sensitivities? Or is it like celiac in that it's triggered and never goes away? Laura, I'm thinking about you with these questions. Maybe you're part of the Lyme clan, too. Not that all of us have it .... but it just seems weird that you would all of a sudden be allergic to food.

I posed this same question and line of thought to Laura yesterday in a pm. We are thinking alike.

[CarlaB]

I posed this same question and line of thought to Laura yesterday in a pm. We are thinking alike.

That's what they say about great minds ... which I have when it's here with me ... when it leaves, it's still great, I just don't have use of it.

[DingoGirl]

That is the hard one for me. I think of a friend of mine who is being crippled by arthritis and knows that sugar is harming her and yet she continues to drink four cups of coffee a day and two teaspoons of sugar in each of those cups. I worry about her, she is four years younger than me and in increasingly worse health but she will not look at it, being a nurse doesn't seem to help either. I just know that I have to respect everyone's right to an early death by stupidity. Mine too.

death by stupidity ....that's a good one. I am observing, as I get older, that many people are so entrenched in their unhealthy habits and USED to their lesser quality of life that it is easier to stay with that, with the familiar rut, than it is to change. Think about it.....just think about how radical it is to completely remove gluten, for example - that one alone takes lots of planning, effort, discipline, reserach, and vigilance. It is MUCH easier to stay in one's bad habits and familiar state than it is to change and seek health....and also, when a person changes and regains health, more is expected of that person. Many people hide in their illnesses, it is easy to do. But ultimately as we all know much more terrible in the end.

Your med reaction sounds scary.

I think you have a good plan and excercise is supposed to help us feel better. If excercise can help with anger, stress releaser etc I would think it would have a soothing effect for you.

I don't know if exercise helps my anxiety, but it does help my energy. Patti, so sorry about your debacle.....I think that was a terrible but unusual reaction. Carla's suggestion of taking the St. John's Wort is a good idea.

Miamia.....so sorry you're down, don't ever worry about posting that here.

My gosh, we haven't heard anything about Evie in quite a while, have we? OR have I missed something?

Very bad poop today. Very bad tummy ache, and the only new thing was a Stash black chai tea yesterday.....could that be it?

[Rachel--24]

I was like, no big deal, remember I had just found out I had Lyme disease.

No kidding. Not eating gluten??? Thats small potatoes...

About the anti-depressants. They tried to push them on me for 3 years. I finally relented when the OBGYN tried to convince me that if only I gave it as chance I would get better...he *guaranteed* that 2 months on Prozac would change my life. I finally said ok....and guess what....nothing happened.

When I went back I told him that nothing changed except my sex drive is gone now. He said "Oh....common side effect...we can just counteract that with Wellbutrin."

WTH??

I told him I had a better idea....why dont I just stop taking the Prozac cuz its obviously NOT WORKING. Ummm....DUH.

When I got to my worst and they were telling my mom to maybe bring me to the mental facility (I wanted to go by the way) or to get me in to see the psychiatrist.....we ended up seeing the shrink. My mom went with me....I couldnt even walk very good or hold my head up cuz I was really weak. The psychiatrist said she couldnt help me....my problem was physical and she couldnt do anything for me. She told me that she could prescribe something that could make me deal with everything better but it wouldnt "fix" the problem...just help me cope....if anything.

I was gonna get the anti-depressants because I didnt know what else to do. When I went to the pharmacy to pick them up the Psychiatrist had made a mistake when filling out the script. The pharmacy couldnt fill my prescription until they could get ahold of the psychiatrist and speak with her. They were having trouble getting ahold of her and during those couple days is when I started experiencing miraculous changes from being on the organic foods and elimination diet the naturopath Angel lady had put me on.

I believe it was MEANT for that script not to get filled. If it HAD been filled I would have been on the anti-depressants and all of the miraculous changes would have been attributed to the meds. It would have appeared that all of my problems were indeed "in my head". Who knows what path I would have gone down if I would have ended up taking the antidepressants....it would have been disastrous for me. I never went back to pick up those pills because all of a sudden I wasnt depressed anymore.

[jerseyangel]

Hi Carla--The St. John's Wort--did you have any side effects at the beginning? My alternative practioner didn't actually tell me to take it, but he said that it was better, in his opinion, than the Rx meds and that they use it routinely for depression in Germany (where he also teaches)

The only med I take is for high blood pressure--probably wouldn't be a problem, but I'd ask

I wonder if something shifted the last time you were sick--I know that autoimmune disease is sensitive to trauma and illness, apart from Celiac triggering. Maybe that's why you haven't come back as well this time.

I always blame the surgery I had in March of 04 as my "trigger" for the Celiac to move into high gear. I was thinking the other day, and suddenly remembered in 03--January, I had the flu. I was working at the school at the time, and had to take several sick days. Even when I did go back, I was not really better, and finally went to the doctor. All during the spring/summer of 03, I was sick to my stomach, and the emergency trips to the bathroom increased. I remember, because Matt graduated high school in 03.

I went back to work in Sept., but only made it to November. That's it--it was the flu that was the final trigger.

Not that it changes anything But I was thinking of you as I was piecing all of this together.

Susan, The Stash Chai Tea--I drink it all the time. I love Stash--they don't use gluten at all in their factory. Actually, I make the Chai, add sugar and a lot of Vance's and it is very close to Starbuck's Chai Latte.

[Rachel--24]

While I don't think its necessarily my underlying problem I think ridding my self of it it may be key in getting to whatever that underlying problem may be. Does this make sense?

It makes sense.

Keep in mind that you might not be able to get "rid" of it completely *because* of the underlying cause....but you might be able to feel better which is the main thing.

I'm gad you're gonna look for your results....hopefully you can find them....if not.....no big deal because your Dr. will have them.

That does suck about how Dr.'s speak to us.....with no bedside manner.....like we arent really people who are suffering and desperate to get better....like our lives arent affected by this every single day.

Patti

((((((((((hugs)))))))))))))) for you.

I'm sorry to hear about the bad reaction.

I agree about getting exersize...and trying other things. I dont blame you for not wanting to try another med after that experience......I would be scared too.

I'm glad you feel comfy to talk about it here though.

I hope the tea Rinne suggested works out better for you.

[jerseyangel]

Patti

((((((((((hugs)))))))))))))) for you.

I'm sorry to hear about the bad reaction.

I agree about getting exersize...and trying other things. I dont blame you for not wanting to try another med after that experience......I would be scared too.

I'm glad you feel comfy to talk about it here though.

I hope the tea Rinne suggested works out better for you.

Thanks, sweetie And thanks again for this wonderful, comfy place where we can come to talk things over. I don't know what I'd do without it or all of you! Group ((((((hug))))))))

[Rachel--24]

I don't know why, maybe it's just been so long that I haven't felt well, and there just never really ever seems to be anything wrong when they test me.

Yeah....thats how I felt!! Nothing ever showed up...making it look like I was some kind of hypochondriach freak.

I was starting to think it was all some kind of cruel joke.....that I was getting punished for something in a past life or something. How could I feel like this and everything is normal???

They just werent running the *right* tests...so when they run the *right* test....something will show up.

[Rachel--24]

One symptom of Lyme is the feeling that we are losing our mind. Think about it, it is literally true, once the bugs establish themselves they can do all sorts of things like turn our body temperature down because they like the cold. They can turn us into clumsy fools that ride straight into telephone poles.

Hilarious.

When I was a kid...rollerskating through Gloden Gate Park (SF)...I skated right into a telephone pole.

I cant really blame it on the Lyme though...

Rinne....

Good scientificness about the bands. I had one positive 58 and one negative 58. Did Lymetoo ever get back to you about your results? She had told me that 58 and 66 were indicative of Lyme...those were the ones I had but one was on the IgG and the other on the IgM. Did you have any differences on your results...IgM and IgG?

It seems like the 39 band is the most specific for Lyme...we both had IND's on the 39 band.

Ok....time to start the band research.....

In the kitchen I have one of those under the cabinet ones with a celiac disease player.

Why do I always forget about this.

I have a question about this eos. Doesn't it seem that there STILL would be something underlying it that would be causing this immune reaction and all these sensitivities? Isn't it like fibro or CFS in that it seems to describe a reaction more so than the underlying problem? Even though you could feel better off all the foods you are allergic to, wouldn't there be something causing these sensitivities? Or is it like celiac in that it's triggered and never goes away?

I was wondering about this too! I have to admit.....I didnt read all of the EOS info.......but I wasthinking the same thing? Wouldnt there still have to be an underlying reason for this type of reaction to be occurring? I dont know if there is a cure or treatment for EOS...because again...I didnt read all the scientificness.

If it *is* like Fibro or CFS or IBS...in that its just something you have to live with...then I'm inclined to believe its another diagnosis defining a cluster of symptoms affecting a certain body system but not really getting to the underlying cause that is triggering this response to begin with.

I dont know really know though....Laura is the EOS expert and I havent read all the material.

I posed this same question and line of thought to Laura yesterday in a pm. We are thinking alike.

haha..

I've been pre-mature posting...I got really behind.

That's what they say about great minds ... which I have when it's here with me ... when it leaves, it's still great, I just don't have use of it.

Me too....my brain goes on vacation sometimes. It doesnt give me advance notice or anything....just comes and goes as it pleases. At least when its here....its functioning quite well.

All of the *stupider* things that I do....well thats when my brain left and I cant be held accountable for those moments in time.

[AndreaB]

I believe it was MEANT for that script not to get filled. If it HAD been filled I would have been on the anti-depressants and all of the miraculous changes would have been attributed to the meds. It would have appeared that all of my problems were indeed "in my head". Who knows what path I would have gone down if I would have ended up taking the antidepressants....it would have been disastrous for me. I never went back to pick up those pills because all of a sudden I wasnt depressed anymore.

That naturopath (was that what she was) was definately place in your path to help you. I shudder to think where you'd be now if you'd had that script filled.

Group ((((((hug))))))))

Back at you.

[CarlaB]

Patti, I didn't have any side effects from the St. John's Wort at all. I need to wear sunglasses when it's bright out, but other than that, nothing.

I think the last time I was sick did make things worse, but I think that the gluten intolerance has always been there. It was several months after I was sick that I read that if you eat something every day you are probably allergic, so I cut out wheat for a couple weeks. I felt horrible for a few days. Then I challenged it and got sick from the wheat. At that time there were no digestive symptoms. I got the digestive symptoms 2 years later when I started eating it once in a while because the book had said sometimes people can eat the food that causes trouble if they don't eat it all the time.

So, I don't think the gluten intolerance was triggered by the illness. It is suspected that I had chlamydia pneumonia, which is a common co-infection for Lyme. It was never verified because no matter what it was, it would have been cured by the doxy. We had a new bird die three weeks before I got ill, and the bird had the symptoms of psitticosis, which is chlamydia. I was "nursing" the bird when it died, but it was weird that I was the only one in the house who got sick from it.

I think the bacteria infection stirred things up a bit. Lyme makes a lot of sense. I look forward to seeing my results.

[jerseyangel]

I think the bacteria infection stirred things up a bit. Lyme makes a lot of sense. I look forward to seeing my results.

Yes, it really does. I can't wait to see your results either!

One more question Is there a good brand of St. John's Wort--or are they all about the same? Should they be just the one ingredient, or do they put other things in also? Tee Hee--that was 2 questions

[CarlaB]

I take Solaray. I'm sure they're all about the same. Check it out for yourself though ... I stopped all supplements yesterday and d went away today. Obviously something was bothering me. It could have been the vitamin C as it's always been a problem for me. I'm going to start adding them back slowly this week. But I have to cook Thanksgiving dinner for 13, so maybe I'll wait till Friday.

[Rachel--24]

Rinne...

I found this...it just gets more confusing to me. I dont think any of the positive bands on my test can totally confirm Lyme Disease. The *most* significant on my test would be the IND's on band 39 and band 34. I think IND's are significant but I would still rather see a positive here.

Several studies have shown that

the first band to show up on a Lyme disease patient's IgM blot is usually the one at 41 kDa,

followed by the OspC band and/or the one at 39.

The OspC and 39 kDa band are highly specific for Bb, while the 41 kDa band isn't. That's why the 41 by itself isn't considered adequate. Here's the rub, though: the CDC doesn't want the IgM criteria being used for any patient that has been sick for more than about six weeks. The thinking here is that by this time an IgG response should have kicked in and the IgM criteria, because they require fewer bands, are not appropriate for patients with later disease.

A number of criticisms have been offered of the CDC criteria since their adoption in 1994.

The first is centered on the CDC's failure to make any qualitative distinction among the various bands that can show up on a patient's Western blot.

A number of Lyme disease researchers feel that different bands on a WB have different relative importance -- that "all bands are not created equal."

For example,

many patients with Lyme disease will show reactive bands at, say, 60 and/or 66 kDa. However, these correspond to common proteins in many bacteria, not just Borrelia burgdorferi, and so are of limited diagnostic usefulness, especially in the absence of other, more species-specific bands. The band at 41 kDa corresponds to Bb's flagella (the whip like organelles used for locomotion -- Bb has several) is one of the earliest to show up on the Western blots of Lyme disease patients. But for some reason it is also the most commonly appearing band in control subjects. This may be due to the fact that many people are exposed to spirochetes at some time in their lives and so their sera might cross react with this protein.

On the other hand, certain other bands are considered highly specific for Bb -- the aforementioned

31 kDa band, for example, or

34 (OspB) or

39 or OspC (anywhere between 22 and 25).

Also thought to be species-specific are

The 83 and

94 kDa bands. Many Lyme disease scientists believe that any patient whose IgG Western blot exhibits bands at, say, any three (or even two) of these locations almost certainly has Lyme disease, regardless of whether or not any other bands are present. They feel that these bands on a Lyme Western blot are simply more meaningful than other, less specific ones and that a rational interpretation of a WB result should take this into account. Unfortunately, this does not often happen, and will happen even less with the new CDC criteria.

[jerseyangel]

Carla--Good idea about waiting till after Thursday! I am actually off all suppliments, as they all affect me. I've tried several, and I feel better off of them. I think it's my body's way of telling me something.

This is all so hard to navigate...

[DingoGirl]

All of the *stupider* things that I do....well thats when my brain left and I cant be held accountable for those moments in time.

she said stupider (a word I particularly like that isn't really a word, one of many)

okay...so not the Stash tea..... I don't know what then but I DO know that I can't eat grapes any more. But there was nothing new yesterday.....that means it was the QUANTITY of flax seed chips yesterday from Trader JOe's....I can't eat half a bag. WHAT is with the binge eating, I ask you?

BTW don't bother renting The Breakup if you haven't already...they wrecked that movie. Could have been SO adorable and they were just mean to each other and fighting all the time after the first 15 minutes. Heinous.

[CarlaB]

BTW don't bother renting The Breakup if you haven't already...they wrecked that movie. Could have been SO adorable and they were just mean to each other and fighting all the time after the first 15 minutes. Heinous.

I agree. There were some cute things, and funny things (like the "Telly Savalas" ), but all the fun scenes were on the commercials, the rest just showed all the garbage that goes on in a breakup. Definately not a "feel good" movie.