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Rachel--24

Omg...i Might Be On To Something

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I too am fairly new here. I had been lurking for months knowing I was "on to something".

I met Rachel over at YC as well as well as April. I would really try to soak in all that they had to say.

I also met a dear friend Sandi,( who some know passed away recently from ovarian cancer) on the YC and she was instrumental in helping me understand the heavy metals issues I was facing, so I wouldn't be here today or I believe bed ridden if I hadn't found all of you.

Thanks from the bottom of my heart.

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Oh I wanted to ask Rachel

What do you do about vitamins? I know you eat peas for veggies but it seems to me you would be deficient with what you eat from day to day.

I looked at your list of supplements and couldn't fathom that you are getting your vitamins except maybe C's, B's

Please shed some light on my confusion.

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April, all I had to do in Indiana when we lived there was write the school a letter saying I had religious objections to the vaccine. I didn't have to get more specific than that. I know others have.

www.909shot.com is a good website with a lot of info on vaccines and state laws.

Ohio has philosophical objections .... so here I just did that.

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I am new to the thread, but I do appreciate all the support and advice. If it wasn't for Rachel coming on the yeast connection thread every now and then and giving us all the good info on lyme, I wouldn't have even thought of that! A couple of people on that thread were diagnosed with lyme. 3 that I can think of off the top of my head.

Yeah...I can be persistent...thats for sure!! :lol:

A few years ago I bombarded that board with info. on gluten inltolerance/Celiac...at that time I think most people were eating all the gluten grains (except wheat) while on the candida diet.

I think I drove people crazy!! :P

This past year I'm sure I upset some people with my posts but I feel if the info. makes a difference in one persons life its all worth it...so I dont give up. :)

Rachel,

Do your dr's detox children? And how young do they start? Do they do iv chelation on younger ones?

Yes, All of my Dr.'s work with young kids....they all deal with autistic kids or kids who are having problems similar to what you're describing with your son.

All of my Dr.'s do different things as far as detox goes.

My BioSET pratitioner works with kids as young as your son. She detoxes them from vaccines and other issues that show up for them. This is who I saw for correcting problems in my detox pathways as well as desensitizing hundreds of things I was reactive to. She does the same things with the kids.

Dr. Amy is my ART practitioner from Washington...she also works with alot of young kids...she specializes in Lyme, Metals Autism, etc. She identifies the problems...whether its metals, infections or some other type of stressor. She finds the treatment that will be most effective and that my body will handle the best. She gives a list of what I need...some things I can get from her and some things she is not able to prescribe since shes a ND. For those things I go to one of my MD's.

Last time I saw her she wanted me to add in the Transdermal DMPS which is what they would most likely use for someone your sons age. She tells me whats gonna help the most and I then go to one of my other Dr.'s to follow-up on that.

TD-DMPS is a skin cream that has been very effective in detoxing the kids. Dr. Amy suggested I only use one brand though (I have it written down)....she has found the others to be less effective and with this one shes had amazing results with her autistic kids.

My MD also wasnted me to use the cream to start with...but I opted for IV DMPS instead. Now I will most likely be doing both on alternating weeks.

I go to one of my MD's for the IV chelation....he's the only one I see who does the IV's...including the minerals, vitamins, glutathione, etc. I've seen kids there but none as young as yours in the IV room. I asked the nurse once and she said yes...they have some as young as 3...and its difficult because they dont really understand whats going on and obviously they're scared.

I see older kids there getting IV DMPS but I dont know that they're giving it to 3 year olds...unless possibly for a provoked urine challenge. I know my Dr. would opt for TD-DMPS for someone that young. The younger ones may be getting other things in their IV's...but this Friday when I'm there I'll ask if they do IV DMPS for young kids.

The other MD I saw for my LED treatments uses only DMSA, ALA, NAC...and other supplements...but that wasnt the way I wanted to go for this. He doesnt use DMPS at all. He does treat kids as young as yours and even younger....I think they had a 2 year old they were treating awhile back.

So theres lots of different things they do....its just a matter of finding the right combination of things and deciding what will help your son the most. One Dr. might say DMPS is too harsh...or too aggressive and another might say DMSA is problematic and not as predictable as DMPS.

Thats why I had to thoroughly research everything and decide who I wanted to see for chelation.

I think that it would be best not to rush into any type of chelation with him without first getting a clear picture of whats going on with him. Especially with regards to infections such as Lyme. It seems like TD-DMPS might be one of the safer methods of chelation for kids. It can still cause problems if he's not able to excrete well...or if he's reactive to the DMPS itself.

These are just some things you can look into though.

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I also met a dear friend Sandi,( who some know passed away recently from ovarian cancer) on the YC and she was instrumental in helping me understand the heavy metals issues I was facing, so I wouldn't be here today or I believe bed ridden if I hadn't found all of you.

Thanks from the bottom of my heart.

Laurie,

Its very sad about Sandi. :(

She was on that board as long as I've been there....and always talking about the metals. I know she helped alot of people.

I spent most of my time over there posting about Lyme and other issues that werent ever talked about. I didnt spend alot of time on the metals because she pretty much took care of that in all her posts. :)

She will be remembered by many.

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My LLMD treats very young children as well; he treats a lot of autistic kids. However, I don't know all the details of how he treats. The office now has a therapy dog--a beautiful large dog. I assume that is partly for the children, as I have never been formally "introduced!"

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Yes, it is very sad about Sandi. She was always very nice and taught me a lot about metals.

Rachel,

I don't know if you made anyone mad. I always looked forward to your posts because they were always very imformative! I learned a lot about metals, lyme, hypercoagulation, ect! My son got sick one time and i could see all the veins in his body (he's very fair to begin with) and I diagnosed him with hypercoagulation. I warmed him up in baths and extra clothing. How would I have known that without you!!!!

Thats good to know about the TD DMPS. Once I get my lyme tests back I will know where to go with my kids. My daughter did well on the HMD over the summer, but he's a lot more sensitive and I think more burdened than she. I am thinking of taking all our supps and the HMD to the chiro to be muscle tested.

Do all your dr's talk to each other? Or do you choose 1 here and there that you think will work and go from there?

At this point, I have a few, but none work together.

Carla,

For some reason I thought I couldn't claim religious since I had already had him vaccinated previously. I think I will call the school system and see if its that easy to just write a letter. Maybe it is!

April

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Oh I wanted to ask Rachel

What do you do about vitamins? I know you eat peas for veggies but it seems to me you would be deficient with what you eat from day to day.

I looked at your list of supplements and couldn't fathom that you are getting your vitamins except maybe C's, B's

Please shed some light on my confusion.

Laurie,

I dont worry too much about vitamins right now...I just get what I get from food. Its probably better now that I'm able to eat more things.

I've always had problems with vitamins...especially B's...but C as well. I dont test well for vitamins and even with the IV's they never gave me any B's because my Dr. said most patients who are as reactive as I am do not tolerate B.'s. My BioSET practitioner said the same...alot of people react to B's...and I should probably avoid the B complexes for now.

I didnt show up deficient in vitamins in bloodwork but that doesnt mean my body is utilizing them. Right now I think they would do more harm than good and none of the Dr.'s have been conerned except for the Vitamin C...which they do want me to take. Unfortunately, I react to it so its not gonna help me at this point.

I was on Methyl B12 shots for awhile. They were compounded...nothing but the B12. This worked for me because it bypassed the gut. I never reacted to the shots. My Dr. said I no longer need to take the shots...my body isnt needing the B12 right now.

The other big factor is that when you have parasites, yeast and other "bugs"....they're getting most of the vitamins we take...we get very little. I dont see the point in spending the money to feed the bugs. :huh:

B vitamins are usually derived from fungus and I'm very reactive to molds/yeast. They also fuel candida in the gut.

Later on when I've dealt with my gut issues I'll concentrate more on vitamins but right now its not a priority as far as treatment goes.

My son got sick one time and i could see all the veins in his body (he's very fair to begin with) and I diagnosed him with hypercoagulation. I warmed him up in baths and extra clothing. How would I have known that without you!!!!

April,

I remember that! I also remember the discussion about goats milk. I was happy to read (several pages back) that your son improved off of all dairy....no more dark circles...YAY!

Do all your dr's talk to each other? Or do you choose 1 here and there that you think will work and go from there?

They do know each other...or know of each other. My MD recommended I see the BioSET practitioner and she sent reports to him so that he was aware of what was going on.

My BioSET practitioner set me up with Dr. Amy (ART practitioner) because I had so many issues and ART can prioritize things and let us know right away what is causing the most stress. BioSET wasn't able to prioritize. It was showing us ALOT of problems but we had no way to know if Lyme was the main issue...or metals...or what?? ART cleared that up for us.

Dr. Amy recommended I do LED to help with detox and thats when I found out about the MD in my area who does it.

I have another MD that I was seeing before these Dr.'s and she would like to be in the loop...especially now that I'm treating the parasites. She will probably be at the top of my list for that particular issue.

Even though they arent speaking to each other they do have respect for one another. They are not arrogant and are very open to new ideas. My MD really values the info. that both my BioSET practitioner and Dr. Amy are able to provide. It helps him alot since he's not able to do these alternative types of testing and so many of his patients are very sensitive. He needs the help of the alternative practitioners when treating the more complicated patients. He has great respect for the "magic" they do. He doesnt understand understand how it works...to him its magic ( :lol: ) but it helps his patients get better....and thats all that matters. :)

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Everyone,

I have a problem. So, it's obviously been a bit crazy in my life the past couple weeks with my health and now my brother. In the middle of all of this, there is still a leak in my room, and it is ruining the carpeting because it started leaking either during the day when I wasn't home or at night and I didn't know it. So, now there are quite a few really dark brown spots on the carpet because the water is probably turning to mold.

I don't know if I'm herxing or if it's the possible mold exposure, but I have had a sudden increase in fatigue and headaches along with nausea (well, that never goes away, it has just worsened again and I keep losing weight). I don't know what to do. I don't know if I should take the chair out (the one that has been leaked on time and time again) of my room, but we don't know where to put it. I really just am wondering if anyone has any ideas because I am just out of it. ;)

Also, what do people do for headaches? I can't really take epsom salt baths because my PICC line.

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Kassandra, seems like moving the chair temporarily, even into the hall, just to see if it is bothering you might be in order...what about into your brother's room temporarily just to try?

Headaches I don't get a lot of. Chinese people do the gua sha for it...on the back neck areas.

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You know how we've talked here about people having pain in their neck and shoulders, and how many of us do?

Well, it was very interesting today when I did the gua sha. I hadn't done the neck and top of the shoulders before. Well, it turned the worse color ever. Seriously, it is black or dark purple in spots, green in spots and red in others. I am going to have to wear turtlenecks---and it still will show a little on the neck! LOL--I told my hubby that I should do it to him, then we can tell people he didn't touch me---but I did it to him! It really looks awful.

Also it was painful, but again just in the areas where it turns color. Otherwise it feels good, like a really good backscratch! You use a firm hand, with the rounded bone at a 90 degree angle--perpendicular to the skin so the flat side of the bone or horn is against the skin, you don't want just the edge. I used olive oil on the skin. It doesn't break the skin at all. Tonight it is a little tender, just like I'd been in the sun a tad too long.

I am thinking about our discussions of fibrin and that the circulation is impeded; that is the concept behind the gua sha. The dark black/purple areas of my neck are from "plugged" circulation--essentially these areas are blocked. My guess is both blood flow and lymph are impeded.

Since I didn't have time to buy my own, I borrowed my friend's ox horn piece (she said it is better than a piece of metal--you don't want any transfer from metal), bone or horn is better. And I am going to keep doing this or trying to talk someone into helping me do it, LOL. She said a treatment series would be 6 to 7 times.

Does it help? Not sure, seems to have a positive impact on me so far. I guess that improving the circulation has got to help move toxins.

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Rachel

I hope tou do not mind me asking so many questions because I have 2 more here.

Do you still use gluthione?

Did you react to biotin?

thanks

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Not sure when I'll be able to post again, I'm leaving for the USA tomorrow. It will be different to be posting in a similar time zone as most of you!

Sherry

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Sorry I'm not going to be able to reply to everyone - just too tired with this lingering sinusitus to spend much time here :angry: But I did want to say - Rachel, really great to hear about your progress :D Kassandra - so sorry to hear about your brother, but I hope he's in the right place now to get the treament and help he needs.

S x

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For some reason I thought I couldn't claim religious since I had already had him vaccinated previously. I think I will call the school system and see if its that easy to just write a letter. Maybe it is!
Well, I did and my kids had some shots. My "religious" exemption is not because the Catholic Church says you can't vaccinate, but because I believe it's our duty to not do anything intentional to hurt our body ... I think vaccinations hurt our body, thus the religious exemption. I did not have to explain it though, I just had to tell them I was taking the exemption.

Everyone,

I have a problem. So, it's obviously been a bit crazy in my life the past couple weeks with my health and now my brother. In the middle of all of this, there is still a leak in my room, and it is ruining the carpeting because it started leaking either during the day when I wasn't home or at night and I didn't know it. So, now there are quite a few really dark brown spots on the carpet because the water is probably turning to mold.

I don't know if I'm herxing or if it's the possible mold exposure, but I have had a sudden increase in fatigue and headaches along with nausea (well, that never goes away, it has just worsened again and I keep losing weight). I don't know what to do. I don't know if I should take the chair out (the one that has been leaked on time and time again) of my room, but we don't know where to put it. I really just am wondering if anyone has any ideas because I am just out of it. ;)

Also, what do people do for headaches? I can't really take epsom salt baths because my PICC line.

Kassandra, have that lawyer you know write a letter to the landlord. Start making them know you are serious and you are sick.

For the chair, I think it was a good idea to put it in your brother's room for a while.

For headaches, I take Tylenol ... it doesn't happen often.

Not sure when I'll be able to post again, I'm leaving for the USA tomorrow. It will be different to be posting in a similar time zone as most of you!

Sherry

Sherry, have a safe trip! It's been interesting hearing about your treatments.

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April, that's great. You'll need to prepare your kids, as it is quite uncomfortable if you have a reactive area, the other areas are just fine. Maybe the practitioner can make some suggestions for the kids so it is easier for them.

Sherry

On her website she says she has a "fun program" for kids so they won't be scared. I think she starts out very slow with them. I am going to call today to check it out.

Do you find that you have trouble moving out the toxins that it releases? That is my only concern.

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April,

I remember that! I also remember the discussion about goats milk. I was happy to read (several pages back) that your son improved off of all dairy....no more dark circles...YAY!

They do know each other...or know of each other. My MD recommended I see the BioSET practitioner and she sent reports to him so that he was aware of what was going on.

My BioSET practitioner set me up with Dr. Amy (ART practitioner) because I had so many issues and ART can prioritize things and let us know right away what is causing the most stress. BioSET wasn't able to prioritize. It was showing us ALOT of problems but we had no way to know if Lyme was the main issue...or metals...or what?? ART cleared that up for us.

Dr. Amy recommended I do LED to help with detox and thats when I found out about the MD in my area who does it.

I have another MD that I was seeing before these Dr.'s and she would like to be in the loop...especially now that I'm treating the parasites. She will probably be at the top of my list for that particular issue.

Even though they arent speaking to each other they do have respect for one another. They are not arrogant and are very open to new ideas. My MD really values the info. that both my BioSET practitioner and Dr. Amy are able to provide. It helps him alot since he's not able to do these alternative types of testing and so many of his patients are very sensitive. He needs the help of the alternative practitioners when treating the more complicated patients. He has great respect for the "magic" they do. He doesnt understand understand how it works...to him its magic ( :lol: ) but it helps his patients get better....and thats all that matters. :)

Well, initially the dark circles did get better by taking out goats milk and he doesn't go straight to an ear infection when he gets a cold. But I have found that the dark circles come and go now. I guess thats better than them being persistent.

I think they will be there until I get the toxins out. So that will be my focus.

Thats good to know about your doctors. I originally got the impression that you had a "one stop shop" kind of deal. It's good that they are open to one another's ideas and respect their findings.

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I also met a dear friend Sandi,( who some know passed away recently from ovarian cancer) on the YC and she was instrumental in helping me understand the heavy metals issues I was facing, so I wouldn't be here today or I believe bed ridden if I hadn't found all of you.

Thanks from the bottom of my heart.

Its very sad about Sandi. :(

She was on that board as long as I've been there....and always talking about the metals. I know she helped alot of people.

Oh, I bet that's the same Sandi from the metals forum I was visiting for a while last year. I know she had cancer. Very sad!

Also, what do people do for headaches? I can't really take epsom salt baths because my PICC line.

I usually don't do anything...I try to wait them out usually. If it's particularly horrendous I might take a Tylenol, but I try to avoid that if possible. Sometimes I'll gently rub my temple area, or my head, but that doesn't always seem to help.

Not sure when I'll be able to post again, I'm leaving for the USA tomorrow. It will be different to be posting in a similar time zone as most of you!

Wow, Sherry's going to be here soon!!! :)

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Tiffany, thanks for the info about the low toxic paint. I'll keep that in mind for future reference :)

Sherry, safe travels to you!!

Very interesting info about the gua sha.

Kass, sorry about all the stress you have been under.

I don't know anything about what you might be experiencing with the meds, but Bach Flower Rescue Remedy is good for strees.

I don't take aything for a headache, for me it is usually a matter of my mom adjusting my back. And I try to drink a lot of water to flush everything out.

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Not sure when I'll be able to post again, I'm leaving for the USA tomorrow. It will be different to be posting in a similar time zone as most of you!

I don't envy you the jet lag and getting used to a different time schedule while you're on this side of the "pond". Looking forward to you hitting stateside though.......safely that is. :lol:

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I called the lyme doc's office this morning to see if my labs came back. They did - everything's negative. They're faxing them over to me today. I asked flat out if it's worth bothering to come in since my results were negative and they said no. I cancelled my appt.

So now what? I feel like I just shouldn't bother anymore. I'm crying as I'm typing this. I'm so frustrated... disappointed... angry at my body for rebelling, myself for being like this, and the medical system for not coming up with any answers.

I'd talked about calling Dr H's office no matter what the results were, but at this point, I feel like I'd be wasting both our time.

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Nyxie,

Dr H will test for many other things aside from lyme so I still think it'd be a good idea. Also, Igenex wasn't the test that was used so you can't rely on the negative.

You'll have more peace if you go through a good llmd and have a more definative answer.

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From what I understand many people are also intolerant of corn or allergic to it. Since corn is even more prevalent as gluten, I hope is not the case. I am assuming here that you don't have recalcitrant IBS, Chron's disease or some other organic cause for your symptoms. I was undiagnosed for so long that my IBS is not going away. I take several meds to help control it. Fortunately it is not ulcerative colitis or Chron's. I hope you feel better soon. I take Alpha Lipoic Acid to help reduce systemic inflammation -- an osteopath put me on it last year. That seemed to have helped, but I still have IBS attacks at least once a month. There are infections that can last a really long time and make you ill (H Pylori is one). So I hope you are under the care of a doc.

Well I've been struggling for quite some time now. It doesnt matter what I eliminate I'm still sick. Its like it HAS to be something that is constantly in my system because I havent had a single symtom-free day for over 3 years now. Even when I limit myself to 2 safe foods I'm still having symptoms so basically nothing has worked. All meds or supplements have worsened my symptoms. All gluten-free packaged foods bother me. I toatlly eliminated casein and still have problems. It was only one supplement I was taking that had milk in it so I stopped taking it...felt better...started eating more foods and totally symptomatic again.

I was eating Enjoy Life chocolate chips with no problems..also did some baking...no problems. I had one cake mix with all safe ingredients and reacted. The mix only had like 4 ingredients and I tolerate all of them...the only questionable ingredient is Xanthan gum. Its also in every gluten-free product I've reacted to and also rice milks and almond milks and a ton of other stuff I cant have. I found out its from CORN. I never thought about corn...but its in everything. Even when I'm only eating meat and veggies (no corn) I'm still having corn everyday in my thyroid meds and any supplements or vitamins I've ever taken most likely have corn.

Pre gluten-free I never ate much candy or sweets....my favorite snacks were popcorn and Tostitos. These were also the first foods I started avoiding long before I ever heard of gluten because the next day I always had a swollen face and a migraine. I had thought it was from the salt or something. I thought everything was thyroid related since I had Graves so I started avoiding all salt.

I did some research on corn and its in pretty much everything...seems more difficult to avoid then both gluten and dairy. Today at work (I work in a grocery store) I started reading all the labels of the foods I used to eat before I got sick. They ALL have corn. Its in bread, soups, microwave dinners, yogurts, cheese (why is corn in cheese?). Anyways, I've never been corn-free because of my thyroid meds and lots of other things I've tried over the last year. I had posted about getting "glutened" by all the gluten-free cereals. Well they are all corn based....DUH. I dont know why I never thought of this since everything I've had problems with have some form of corn in them.

I really need to eliminate the corn to see if I get better but dont know how I can do this when I need to take thyroid pills everyday. What do people do in a situation like this? What if I'm intolerant to corn all this time and its in the medication I need to take?

The other big question is am I really intolerant to gluten and dairy? If I get better off corn I dont know what to think about that. All the foods that have gluten also have corn so I would likely have to stay off gluten anyways....hmmm...does pizza have corn in it? :huh:

Also yogurt and ice cream really mess me up but they also have corn. There ARE some brands and flavors that dont have corn so I would LOVE to not have a problem with dairy!!

I would rather be intolerant to corn and gluten both than have to give up dairy for good.

Does anyone have a corn intolerance? Could I have just developed this out of nowhere and NOT have gluten intolerance...or is it more likely that gluten caused this to happen in the first place? I'm actually hoping I'm corn intolerant cuz as hard as it seems I've been struggling a long time now. The symptoms I've gotten from the stuff I've eaten with xanthan gum are severe....also I had powdered sugar yesterday and had another severe reaction. I have no reaction to cane sugar but when I looked at the ingred. of the powdered stuff its cane suger AND corn starch! Right now I feel exactly like I felt before I ever went gluten-free...everything hurts. :( This would explain why I dont do well with anything processed or with any supplements or vitamins or medications.

I dont see too many people here with corn problems but hopefully someone has some advice about the thyroid meds??

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I called the lyme doc's office this morning to see if my labs came back. They did - everything's negative. They're faxing them over to me today. I asked flat out if it's worth bothering to come in since my results were negative and they said no. I cancelled my appt.

So now what? I feel like I just shouldn't bother anymore. I'm crying as I'm typing this. I'm so frustrated... disappointed... angry at my body for rebelling, myself for being like this, and the medical system for not coming up with any answers.

I'd talked about calling Dr H's office no matter what the results were, but at this point, I feel like I'd be wasting both our time.

I'm so sorry Nyxie! I agree with Andrea though...Dr. H might run additional testing.

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