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Rachel--24

Omg...i Might Be On To Something

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I didnt get my blooddraw today and I didnt get my "OAT" test kit :( ...but I did get the CDSA test kit and I did get the porphyrin results. So I guess I accomplished 50% of what I wanted to get done today. :rolleyes:

The nurse forgot today was Friday...and there are no blooddraws on Friday. I had thought that somehow I got "lucky" and that this *one* time they were gonna be able to do it. No such luck though. :P

Also, Dr. S. is saying that the plasma zinc/serum copper is the same as the RBC test that I've already done. I actually dont think its the same test...and obviously Dr. Amy didnt think so either because she wanted this test in *addition* to the RBC that I've already done.

So I have to talk to her so I can explain to Dr. S. exactly what she wants. I didnt reschedule the bloodraw because I dont really see the point in repeating the same test...which is what they'll do. I think what I want is just a regular blood test from a local lab...and not the Doctors Data RBC test (again).

Apparantly they are out of the OAT kits and its gonna take at least two weeks to get more! I'm too impatient for that! I know Amy has the kits so I'm gonna have her send me one instead of waiting all that time.

The porphyrin results were exactly what I was afraid of. "This finding is inconsistent with the presence of active genetic porphyrias or toxic effects from mercury, arsenic or lead."

I kind of felt like Dr. A. was thinking this was a strong possibility because it seems like the phenols have become more of a priority and the metals are kind of in the backseat. So, I guess there was good reason to think the phenols might be a bigger problem.

They werent actually ever tested in ART until the very end of my last session....after we'd been discussing it and they went and found the phenols/sulfation panels. We were just kind of "experimenting" with my theory but it turned out to be a big enough stressor and directly linked to the areas where the majority of my symptoms are.

So now its gonna be a whole new "adventure" trying to determine what set this whole thing off. I think the OAT test will tell us alot and I think the epinephrine might be important as well. Also the high copper....something has to be causing that. The yeast is another problem.....and Im pretty sure that one will show up in the OAT test.

I dont know what role the metals play in all of this or if any changes in biochemistry caused by metals can remain... even after metals are no longer an issue. Thats something I have to talk to Amy about.

My friends are saying that metals could have still been a factor but the "damage" needs to be corrected now. I dont know what to think but it seems clear that the toxicity itself is not caused by the 3 metals that were tested...its not caused by Lyme (or any biotoxin related illness)...and it *appears* to be caused by phenols.

I'm thinking back to Dr. M. saying that mercury was having a "profound" effect on my body....he demonstrated that point by placing a vial containing mercury in my lap and testing me. However, he *also* said that my body was accepting just one single LED treatment for mercury....while most people who were mercury toxic needed 2-3 treatments (at least).

So I dont know if I might have been particularly sensitive/susceptible to the effects of mercury...but not actually having a huge burden which would have been evident in the porphyrin test. I dont know if the exposure to mercury itself could have set this off and the problem remains even though mercury itself is not causing the toxicity in my body.

If thats the case...then like Amy said we dont need to be chasing mercury. We need to find the "glitches" and correct them. We'll have to find the imbalances and work on correcting those as well. I think the OAT test will be good for that.

My friends are also saying that since I did 6 months of chelation it might be that mercury truelly WAS a problem but its actually gone now. I dont really think thats the case....mercury was coming out the whole time and I'm sure it would still be coming out if I retested. The main thing is that I did not experience significant improvement and Amy feels that I definately should have noticed that by now...if we were getting to the source of the symptoms.

So even if mercury played a role...getting rid of it doesnt appear to be having any effect on this phenol problem....and the phenol build-up is the cause of my toxicity/symptoms.

So I think now we will be focusing all of our attention on this phenol/sulfation issue and trying to get things back into balance.

I dont think I'm totally done chelating mercury and I think there is still some "trapped" in that area where it always shows up...but I think it would be better to focus on the pathway problems first and go back to that later.

Anyways, even though this changes the direction of everything I'm glad we know this and I wont be wasting time/money on the metals issue right now. I'm also glad we found out about the phenol issue first....because otherwise I'd be feeling very "in the dark" right now.

Since the phenol issue came up I think that Amy feels that this is the source of my toxicity. I have to agree because my toxicity has always seemed linked to foods and chemicals....I can actually control it with my diet. Hopefully the more testing we do the more we can get it all sorted out.

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Rachel, thanks for the update. Wow its a switch to be moving away from metals as the main issue, isn't it?

Hope you can find some other directions very soon, and glad you have Dr. Amy looking for possible answers.

Sherry

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Rachel,

Ditto to what Sherry said. :)

I'm glad you have a good team working for you. You'll get to the bottom of this. :)

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Rachel, thanks for the update. Wow its a switch to be moving away from metals as the main issue, isn't it?

Totally!! :blink:

But yeah...after talking to Dr. Amy the other day I was kind of prepared for this and we had already talked about how we'd proceed if the porphyrin test was normal. She wasnt looking at it like it we'd be hitting a roadblock...but more like we'd be getting something out of the way and kind of narrowing things down.

So I feel good about that part of it. I want to focus on the main issue and if we're focusing on the wrong thing I'm not going to be making any gains. Thats what we're looking for...GAINS! :D

Hope you can find some other directions very soon, and glad you have Dr. Amy looking for possible answers

I'm glad you have a good team working for you. You'll get to the bottom of this

Thanks guys. :)

I do feel very fortunate to be working with Dr. Amy and the rest. Its complicated but I think we're up for the challenge. ;)

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Dear Everyone,

I am only responding to what I read on this last page, since catching up with all the reading I have missed recently would be impossible. Responding to it all would take up to much room! So, for the sake of brevity, I decided to respond only to the most current posts from page 1994. My appointment with the chiropractor went well. There were reservations, since yesterday was Friday the 13th. You know how superstitious I am.

Dr. D feels the primary issue needing addressed is the digestive distress. Severe malnutrition is what he believes the trouble to be. I am also happy to report he is open to the possibility of Lyme Disease as a cause of illness. He told me it was a bad idea to get my gallbladder out, since your body needs it to process and convert good fats into hormones. This can wreak terrible havoc on your endocrine system. Who knew?

This was also the first appointment with a doctor that actually was worth the money, for 45 minutes. Most appointments are generally ten minutes if you are lucky with doctors. The next thing you know, it will be drive-by medicine, where you go through a drive-thru similar to MacDonald's! Dr. D believes that getting to the root cause is important, not just treating symptoms. Finally, someone who is on the same wave-length as I am!

Considering all of the systems that are problematic, he knows we are going to have to take small steps.

He is having me try Zypan, a combination supplement of HCl and enzymes in place of the Prilosec. I am to take one pill 15 minutes before each of my six small meals, or two with three larger meals daily. If I feel worse, he said to stop taking them immediately, and he will try me on something else. Keep your fingers crossed! Like Mia, I am afraid to even try anything, since my system is in such bad shape. Dr. D told me that I am really far down the road to health oblivion.

He does not want me doing any detoxing, because I am not in good enough shape to do that. At this stage, that would likely cause more harm than good. Another interesting thing is that the sugar cravings are likely the result of the severe malnutrition. His hope is to get me to the point I can get out on my own and work and move out of my parents' house, and improve my digestion to the point I no longer need medications and have a violent reaction to accidental gluten exposure. There was also another surprising thing about him: his height. I told Dad he has got to see this guy, because I finally found someone taller than him.

Dad is 6'2, so not many people are even that tall. However, my doctor is different. He is 6'8! You can imagine how amazing this is. Since I am only 5'1 1/4, everyone towers over me anyway. Dr. D makes me feel like a Hobbit!

The cause of the hotflashes and difficulty sleeping are probably Thyroid related. This is something that is very frustrating. I am not sure what we will do about this yet. I see him again the 27th. Hopefully, we will figure things out!

Dear Paula,

I am so sorry about your aunt! A day before death is cutting it close! Thank goodness she got to the hospital when she did! We all will pray for her and send good energy her way! Please keep us updated.

Biotoxins are important to address. It is good to hear you are doing so much better with the mold removed. I had a classmate who lost a kidney from exposure to Aspergillus and Penicillium. The reason I did not post anything to your question about the mold was because you found as much or more than I did on it! I could not tell you anything else that you were not already aware of!

OMG! You have arsenic in you?! No wonder you have felt so rough. Arsenic is very dangerous. Do they use chelation for that as well? Sometimes seeing a toxicologist is best for that. That is what my classmate had to do for the mold.

We have mold up the rear in this place. It is growing in the downstairs toilet, on top of inside the dehumidifier. I hate to think where all else it is, but suspect the floor and underneath here in the basement.

I bet it is toxic, too! Dad argues that there is no such thing as toxic mold, and that if so, we do not have it.

What is a VCS test? I have never done one of those. Is it for toxins? This is one I have not heard of.

Is it a blood test, or something else?

Thank you for the Calorad information! I used to hear of something called that being advertised on the radio. The one I heard about was for weightloss primarily, though. Is this different? Or, is this the same product?

Dear Kassandra,

I am sorry to hear you are dealing with insomnia, too. I have not slept decent in a month. I have had two or three days where I actually got enough sleep. That was all! That is odd about the Lunesta working so quickly that one time. My Promethazine sometimes make me tired like that, and other times, it seems to hype me up. If your Thyroid is hyper, that might be some of it.

This also might cause your hair to come out a lot. Mine does more when it is hyper. The heart palpitations are really scary sometimes. You fear you are having a heart attack! A lot of the time I just toss and turn when I try to sleep because of them. That HerbSom does sounds expensive. I worry that the Zypan or any other supplement will be too expensive, too. Anything that actually helps you is expensive.

Herxing is no fun! I hope that gets better soon. It is absolute misery going through this type of thing. That may be what was going on with me when I did that course of Flagyl that seemed to cause the backslide I experiences with digestive symptoms. Dr. D thinks all of the antibiotics I have taken over the years may have destroyed my intestinal flora completely. We have suspected this.

Dear Sherry,

That is very fascinating about herxing and the Vitamin D deficiency! Thank you for the link and information! I know sunlight plays a role in this. When I go outside and see the sunset, I do not have as much trouble sleeping. I also tend to get a better quality of sleep on those nights.

In those books I read, they talked about Circadian Rhythmns, and how they are out of whack since the invention of lightbulb. Artificial light interferes with our body's ability to produce sleep hormones such as serotonin and melatonin. Sunlight going into the skin (without sunscreen on) produces melanin, which converts to melatonin. That is why we get sleepy when we lay in the sun.

I hope your herxing lessens soon. That is always rough. It is frustrating being stuck on the sofa or in bed most of the day. Having no energy interferes with everything. Not being able to get anything done is miserable! All you can think about is what you need to do, and that you are completely unable to do it.

Dear Carla,

I am so glad you had fun with the girls! Plus, you were able to keep up! That is even better! I am glad at least you are not herxing right now. At this point, I am just trying to figure out how to get my Lyme bloodwork done. Affording anything is impossible, and it is so frustrating.

Dear Lynne,

Welcome to the thread! I do not know much about elastase. It sounds like some sort of enzyme. I can try to find some information. I am sure if I poke around enough, I will find something of use!

Dear Andrea,

It is wonderful to see Rachel making such progress! She has had a long, difficult journey to where she is now. Although she is not in perfect health yet, she is on her way. We can certainly give her tenacity!

Good things come to those who wait.

Dear Rachel,

I am glad your appointment with Dr. Amy went well. There is always something new, exciting, and fascinating when you see her! The focus shifting from the metals to phenols is huge! A connection to phenols is very apparent from the metals. I know there is bound to be more on this somewhere. The studies on it are likely not easy to find, if there have been any, though.

Sincerely,

Jin

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DUH, all molds ara toxic and the only useful one is penicillin and cyclosporin.

By chance I ran across a posting in a thyroid forum about vitamin D, and there is a test for polymorphisms in the vitamin D receptor that the autist parents community are trying out now.

Here is an interesting posting where they pasted in a recent vitamin D newsletter (which is permitted) and they mention autism and glutathione and that vitamin d helps:

http://forums.about.com/n/pfx/forum.aspx?t...uk&tid=4119

I had my D tested and it was 57 nmol/l and it shoulod be at least 80 nmol/l . Note we use mols here.

About porphyrins, there are severla forms of pyloruria and some are just stress related and if you took any b-6 or zinc before the test it is invalid.

nora

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I'm glad you're progressing Rachel.

Jin, good to see you again. Adam is 6'2" and my son is at least an inch taller than him. Fortunately, I'm 5'8" so I don't feel like a midget around here! Two of my kids are taller than me .... so far.

I'm glad you've finally found someone who might know what they're doing. :)

I feel good again today .... this is kind of weird, LOL. After the busy days I've had, you would think I would crash like Adam did last night .... he feel asleep on the couch and I tried to wake him up ... I asked him why he covered himself up instead of going upstairs to bed ... he said, "Because the day's too short." :blink: I knew then, there was no way I could wake him. :lol: He had been gone for a whole week.

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Jin,

Good to see you! :D Glad you appointment went well. This doctor sounds promising. Keep us updated as you can. :)

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Dear Nora,

Yes, mold does have its uses! :) For the most part though, they are harmful. This is especially so for those of us with Candida and mold allergies. :( I even have a skin reaction to it, which may explain the constant on-again off-again hives. I am sure whatever is in our home is making everyone ill.

Thank you for the vitamin D information and link. I certainly would not have found this on my own! It is very interesting. Low vitamin levels are likely a major contributor to my illness. Sunshine does help, but you still often need supplementation to get the proper amount daily. Also, thank you for the pyloruria information.

Dear Carla,

You are so fortunate to be tall! I was standing on a chair the other day, and was like "Wow! This must be what it is like to be tall!" :lol: I thought I had half a chance, since Dad is 6'2, although Mom is only 4'11 1/2. If only I had found out about Celiac sooner, maybe I could have been tall! :o What a bummer! I am glad your children are doing well in the height department!

This doctor certainly appears to be aware of the nutritional aspect of things. That is rare in doctors. I was surprised that he does not necessarily advocate organic food, but whole foods. He said organic foods do not have any more nutrients than the regular kind. My concern is more of what is not in them, like pesticides and such.

I am glad to hear you are doing so well! :D Poor Adam! He must be really exhausted! We all are doing a bit better now that we are not eating tomatoes. All three of us were sick in the past few weeks, due to salmonella.

Dad got the sickest, because he eats the most salads, due to their low carbohydrate content. Dad never gets sick like that!

I told him "You know how you felt with the food poisoning? Well, I feel that way every single day! Now do you see why I cannot work?" :blink: I should not have had sympathy for him, but I am not capable of it. Stupid empath abilities! :angry: So, I ended up sharing my Promethazine. I knew I was feeling worse than usual, but since I feel rough so often, it was difficult to tell. :rolleyes:

Regardless, we are now all afraid of tomatoes. It is bad enough to have be scared of gluten, but now bacteria?!

Even worse, our dog started gagging because Dad was sick! Poor Dart! Dogs are very sensitive to our energy, so they tend to absorb it when we are physically and emotionally distressed. He has not been eating well lately, and we hope that he does not have another hairball.

Dear Andrea,

I have missed everyone so much! :wub: I am trying to get back in the swing of things. Everything has been somewhat crazy lately. We have been trying to get the house cleaned up. Last week, we managed to clean up the kitchen some, and get the large table out of there. Then, we moved the bistro set up to save room in the kitchen.

Sincerely,

Jin

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Rachel, sounds like you are onto something :lol: Thanks for the update. I know you and your team will put your smart brains together and figure this all out and GAINS you will make :D

Jin, so good to see you! I am glad you had a good appt with your new chiropractor guy, I think it's good he is trying to get to the root and starting you out slowly since you don't tolerate many things. Please keep us posted!

Carla, sorry I didn't get to post a "have fun" with the girls at the softball tourney (was it softball?) in time...and now you have already been and you're back :lol: SO happy to hear you had a great time and even better that it didn't wipe you out. I know that would be progress for me, so YAY for you :)

Just to add to the height convo, my uncles on my mom's side, tall, tal, tall, 6'6 and 6'7, that whole side of my family is tall. I however did not get any of that height :lol:

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Hello everyone...still in a weird place, so not posting much, but AM trying to stay caught up.

Hooray, a Jin sighting and good news from Rachel!

Carla had a great time and is feeling well.

I've been doing a lot of thinking the last week or so....I think I've decided to ask Dr. S to retest me for molds. The blood test we're working from is over a year old and at the time I was still getting allergy shots (or had JUST stopped them)...one of the big things in my mix was molds.

I've also decided to ask for the RBC and another urine challenge.

I may have to wait until after my surgery for all that, but that's my plan. I'm hoping I can get in to see Dr. Amy, but I think she's due down in July and that's when my surgery is, so I'm only half hopeful that that will work out, lol. If I can't see her here, I'll try to make an appointment up in Washington as soon as my foot is healed well enough.

So that's it, that's my plan. :) Haven't really had a plan, and I'm not sure how much of a plan this is, but it's a start. :blink:

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So that's it, that's my plan. :) Haven't really had a plan, and I'm not sure how much of a plan this is, but it's a start. :blink:

Sounds like a good plan Donna.

I'm still hoping to see you up here, if the timing with Amy down there doesn't work out.

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Kassandra, YAY on the sleep!!! I know the feeling about being in bed herxing, seems like the last three weeks I have hardly been out of bed.

Sherry

It didn't work again last night. <_< I'm going to definitely call Dr H back and ask for something else or something in addition to.

I'm glad you're progressing Rachel.

I'm glad you've finally found someone who might know what they're doing. :)

I feel good again today .... this is kind of weird, LOL. After the busy days I've had, you would think I would crash like Adam did last night .... he feel asleep on the couch and I tried to wake him up ... I asked him why he covered himself up instead of going upstairs to bed ... he said, "Because the day's too short." :blink: I knew then, there was no way I could wake him. :lol: He had been gone for a whole week.

Ditto to all of that!

Adam is SO funny! :D:lol:

Everyone,

I think the Rocephin is starting to kick in. I'm extremely exhausted (after sleeping a whole night) and in a lot of pain. Just everywhere body pain. No fun.

I always forget why I've been in bed so much, until I try to get out of bed to do something else! :lol: My friend was asking me what I've been up to the past couple days and I said nothing really. I was explaining that I lay in bed and beat my self up about what I could be doing, but then I try to do something as simple as shower and I have to "recover." Normal people don't think twice about showering! :lol:

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Donna,

i think its a good plan, a beter plan then what i have lol.

Rachel,

Interesting appt. Im still trying to digest everything u said. Im still brain fogged I guess lol

Today i ate some turkey bacon and 5 minutes i got an huge headache. What could of caused that in turkey bacon.

Im really thinking of ordering those sulfur test that kassandra did, if i get my rebate check next week.

Kassandra,

HAve you tired lavender on your pillow to help you relax before bed. Im thinking maybe u changing sleeping meds all the time is causing some of the insomia. I have noticed that I am sleeping much better now cause im so busy with the kids with baseball and tball almost every night. Im not sure if its from being in the sun, or just being busy.

paula

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I think I remember chlorine bleach kills mold and one other thing I forgot. One does not need to use much bleach, just follow the instructions on the bottle. One must never mix chlorine with any other soap, especially not with salmiakk (ammonia-smelling detergent). Often paint that is labeled for bathrooms contains anti-mold things.

Diflucan for 50 days: what dose?

Sorry you have salmonella from supposedly tomatoes going on in the US. I did read about it here and the farmers cannot get the ripe tomatoes sold and it is the tomatoes from california or florida, I forgot which.

Here we sometimes have a salmonella outbreak but always from imported food or ingredients. We even had salmonella from imported grain for feed from ethiopia. The nespapers asked why ethiopia, a country with a war-like state and the answer was that that was the very reason, the war lords needed money so they sold grain. we have grain here at our local mill from afghanistan. Same reason I suppose, someone needs some valuta there. There can always be salmonella in imported feed here. Food for humans is usually tested.

They put a lot of effort in finding the source of salmonella or strains of agressive E.coli or the like.

I remember the scandal when they found out that some sponges they used to wet the lips of sick people were not sterile, (they were not supposed to be sterile but clean) because the plece they manufactured them never rinsed the hose connected to the tap. This should have been desinfected often.

Completely off topic, you may delete this: I read some days ago in an interview with our most famous fortune teller, Henning Hai Lee Yang (originally from China but he has lived here from childhood) that it is gonna be Hillary after all. I wonder what is gonna happen or what he sees will happen.

nora

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Today i ate some turkey bacon and 5 minutes i got an huge headache. What could of caused that in turkey bacon.

Im really thinking of ordering those sulfur test that kassandra did, if i get my rebate check next week.

Kassandra,

HAve you tired lavender on your pillow to help you relax before bed. Im thinking maybe u changing sleeping meds all the time is causing some of the insomia. I have noticed that I am sleeping much better now cause im so busy with the kids with baseball and tball almost every night. Im not sure if its from being in the sun, or just being busy.

paula

It might by why I can't sleep well Paula. But I haven't actually changed my sleep meds very often. In 7 months I've tried 4 things.

About the Turkey Bacon, it could be nitrates that you reacted to. Was it organic? We always used to buy Trader Joe's nitrate free turkey bacon...it's one of the few things I can usually tolerate no matter what.

Everyone,

OMG!!!!!!!!!!!!!! You all HAVE to see Under Our Skin! It is INCREDIBLE! (sorry to shout, but this deserves shouting, LOL!) I am so amazed...it's life changing. I'm going to figure out a way to send copies to everyone in my family. I am sick of people not understanding, and in my case people want to understand, but don't know how to.

This will leave NO questions in people's mind about the severity of Lyme! AMAZING! :) :) :D

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Nora,

I heard from my mold inspector that bleach is the worst thing to kill mold.

Kassandra,

Why did i think you have changed sleep meds like 10 times lol. I guess 4 times in 7 months is not bad at all lol. I will have to ask hubby what kind of turkey bacon it was, since i threw the package away lol.

paula

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So that's it, that's my plan. :) Haven't really had a plan, and I'm not sure how much of a plan this is, but it's a start. :blink:

Donna....sounds like a plan. :D

I'm crossing my fingers that you'll be able to see Amy next time. :)

Nora,

I heard from my mold inspector that bleach is the worst thing to kill mold.

I've heard this too.

Jin....I'm so glad that you finally got a Dr. who's spending some time with you and that you're feeling good about. YAY! Its been a long time coming for you. :)

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Everyone,

I have an off topic computer question.

I have AOL and I have my instant messaging set up so that when I'm not on the computer a person can IM me directly to my cell phone...and I can instant message back from my phone....just like a text.

I've only ever done this with a person who also has AOL (like my mom). Does anyone know if a person with another internet provider can instant message to my phone like this? My friend in Germany is gonna have Yahoo...so I wanna know if we can communicate this way??

That way while I'm at work we can message each other.....otherwise by the time I get off work its after midnight in Germany. :(

Does anyone know??

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Rachel,

I didn't know you could do that, but I do know that it is very easy to set up a yahoo email/IM.

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Everyone,

I have an off topic computer question.

I have AOL and I have my instant messaging set up so that when I'm not on the computer a person can IM me directly to my cell phone...and I can instant message back from my phone....just like a text.

I've only ever done this with a person who also has AOL (like my mom). Does anyone know if a person with another internet provider can instant message to my phone like this? My friend in Germany is gonna have Yahoo...so I wanna know if we can communicate this way??

That way while I'm at work we can message each other.....otherwise by the time I get off work its after midnight in Germany. :(

Does anyone know??

He should be able to download AIM (AOL Instant Mesesnger) on his computer and then he will be able to talk to you through his computer.

If he wants to talk to you from HIS cell phone, then he would need to have the same type of thing you do with AIM, etc. on his phone. That has to be the same program as you have (AOL).

I think that answers your question. If you need more help, let me know.

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Rachel, what we use all the time is Skype. If you both have internet access from your cell phones, that would work. Also he can call you using Skypeout from his computer to your cell phone and it should be about $.02 a minute. That's what I use to call my kids.

Sherry

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Jin, it's fantastic that you have found a doctor that is really willing to help and that are beginning to take a step at a time in a safe way. So sorry to hear you have all been ill.

Sherry

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