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Rachel--24

Omg...i Might Be On To Something

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Rachel,

I talked to my mom about everything you said. She told me she has had 6 root canals in the last 7-10 years. I told her that she now needs to detox even more. She is willing to do anything. Once she gets back from her vacation, Im going to see if she will do an hair anaylsis test. She does know she has many symptoms due to a few things that she eats, but wont give up food lol. I do not feel she has celiac but an leaky gut.

paula

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I am doing fine now, doing a cleaning job and the arms hurt a little bit but the LDN takes care of that. It aslo helps with seasonal allergies, I was fine this spring, and also helps with low adrenals, I often had to use some hydrocortisone cream because my adrenals really hort and I was dizzy but the ldn helps, maybe because it reduces inflammation in the body. I am aslo under-dosed thyroid-wise but the ldn takes away the hypo symptoms, maybe because it lowers cytokines, maybe. My TSH has finally gone up towards normal, is about 0,8 now (was really low and I got all this hassle from doctors despite of low ft4 and ft3 and hypo symptoms). There is more about ldn on the internet and ahsta.com .

nora

Nora, what form of LDN did you take, how much? How long did it take to help? I was on it for awhile but stopped as it didn't seem to make any difference.

Sherry

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I just want to say hello to everyone I am following along I just am in such a weird stage that I have not posted. I am trying really hard to find some balance and I have not been able to . Everyday is completly different. One day I am terrible and the next day ok - its really unsettling to say the least.

Miamia

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Mia,

It's always good to see your face.....sorry you have been in a weird place. I hope you get things figured out soon. :wub:

Birdy,

Hope you have a fun week.

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I had my appt with Dr H yesterday and it went really well. I don't know if there's any point in sending out an email because not a lot changed. He's running quite a few tests for hormones and wants my results from the pelvic ultrasound (which is today) ASAP! (Let's hope it's NOT transvaginal :ph34r: )

If anyone really wants to hear the details of what else went on, I'm more than happy to type up an email. Just let me know. :)

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Kassandra,

Hope the ultrasound goes smoothly for you. Is the hormone test a blood draw with the typical around 2 week for results?

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Julie, I came across this and wonder if you have seen it, about angioedema and a deficiency that causes it. Low levels of the the plasma protein C1 inhibitor (C1-INH), can be hereditary or acquired.

http://www.emedicine.com/med/topic420.htm

http://medind.nic.in/icb/t07/i1/icbt07i1p83.pdf

Sherry, yes I did come across this info about the hereditary form of angioedema and the connection to the C1 inhibitor.

Thanks for thinking of me though :):)

How are you doing? And are those breakout spots on your husband's neck (or was it his back?) better?

I just want to say hello to everyone I am following along I just am in such a weird stage that I have not posted. I am trying really hard to find some balance and I have not been able to . Everyday is completly different. One day I am terrible and the next day ok - its really unsettling to say the least.

Miamia

Hi Mia :wub:

Sorry about your weird stage, I can so relate :lol:

I owe you a pm, hang in there dear!

Hi Everyone, just wanted to let you all know that I'll be gone for the upcoming week.

:wub: Birdy

Birdy!! Have a good week :)

I had my appt with Dr H yesterday and it went really well. I don't know if there's any point in sending out an email because not a lot changed. He's running quite a few tests for hormones and wants my results from the pelvic ultrasound (which is today) ASAP! (Let's hope it's NOT transvaginal :ph34r: )

If anyone really wants to hear the details of what else went on, I'm more than happy to type up an email. Just let me know. :)

Glad you had a good appt yesterday Kassandra, and also great news that your infusion went pretty well,

Best of luck with the ultrasound today, I'll be thinking of you.

Rachel, so good to hear that vein is healing :)

Paula, sorry about all you are dealing with with your aunt and mom's health (((HUGS)))!

Nora, thanks for all the info you shared.

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Sherry, about the LDN, I use capsules of 10 mg and dissolve the content of one in 10 ml water and measure out the daily dose with a syringe.

They did comment about the lymies not getting better on ldn, but they think it should still help the immune system as ldn just does that, normalizing the immune system.

They keep writing about lyme on the ldn yahoo groups as they say that the 15% not getting better on ldn for MS are misdiagnosed and really have lyme. But the feel that ldn should help a bit with lyme too. I do not know more about it, have not read about anyone with lyme taking ldn on those forums. Maybe someone on a lyme forum has been helped by ldn, but I have not been to any lyme forum.

Paula, uh, I see . same thing ahppened just a few months ago to the mother of my sister's friend . I met her too. SShe has diabetes, but had an UTI after breaking a leg at home and got the real high blood sugar and the electrolytes then get messed up (one loses potassium when one has high blood sugar) etc. and she was hospilalyzed after she did not get better. I met her in May and she was doing fine. I read on a German personal website that in the case of a diabetic that gets the high blood sugar, they need more insulin ttthan one would think and they had a special formula. The usual formulas have too small a dose. Something like that. Anyway, avoiding getting a fever and infections would be the best thing but that is easier said than done. Here we have these tablets that are not antibiotics, but htey control the bacteriae, called Hiprex, that they can prescribe to UTI prone patients and they take it every day all year.

nora

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Kassandra,

Hope the ultrasound goes smoothly for you. Is the hormone test a blood draw with the typical around 2 week for results?

Thanks everyone for the thoughts about the u/s. The hormone test is a urine test and it also tests adrenals, and I *think* heavy metals. The reason he's doing it this way is because it's a lot more accurate if they test my urine. Blood levels change a lot throughout the day (as far as hormones) but this way it's a 24 hour urine test. So hopefully we'll find out more info today.

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I got my appointments made for the amalgam removal. 4 appointments starting on the 25th of August and ending on my birthday. Oh what fun! <_<

They'll be about a week apart (only change is labor day).

Got an email in to Dr E to see if she wants to see us after one of the removal appointments or after they are done.

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Yay Andrea!!!!!

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I got my appointments made for the amalgam removal. 4 appointments starting on the 25th of August and ending on my birthday. Oh what fun! <_<

I'm so glad you're finally able to get that done, Andrea! :D

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Andrea,

Im so happy for you. I hope to have that done one day.

Everyone,

I got glutened over the weekend. My stomach ballooned to 9 months pg and I have been miserable. My vertigo came back with it to. I forgot how much my body hates gluten.

paula

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Andrea, is it really happening?!?!? :lol:

YAY!!! SO glad you are finally able to get it done :D

Paula, I am so sorry you got glutened :( I hope your discomfort doesn't last too long.

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One day I am terrible and the next day ok - its really unsettling to say the least.

Miamia

Mia, I can totally relate. Hang in there.

Sherry

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I had my phone consult with Dr. A. earlier...it went really well. :)

We discussed alot of different things and I've got some new things to work on to help us get a better picture.

She's been really working hard on this phenol issue since I last saw her. She's done alot of research and talked with different doctors trying to find out everything she can. She said she was shocked at how little anyone knows about this. Even people doing NAET and other types of allergy treatments arent too familiar with phenols. One person she spoke with wasnt even aware that phenols were from foods. :blink:

As far as helping to unload the phenol burden her recommendations were the same ones that I'd already been doing but she did have a couple new ideas. Some of the things mentioned as helpful were epsom salt baths, magnesium sulfate cream, no fenol, molybdenum and MSM cream. A couple things to definately avoid were B6 and P5P....as they would worsen the situation.

I had discontinued magnesium sulfate cream after a few days because of some warm "flushy" type feelings at the back of my knees (where I'd applied the cream). I was worried about a possible reaction to parabens in the cream. Dr. A. said it might be a typical reaction to magnesium as it does cause flushes....and it might be better to apply it at my calves instead. She said the parabens in the cream dont seem to be causing problems and if it did I'd probably see a rash.

So I'll be going back on the cream....and its getting kind of hot for baths anyway. :P

As far as the No Fenol...I've only been taking it at the same time as my meal. She now wants me to take it in between meals. I can still take it with my meal but definately in between as well. The reason for this is to try to decrease my body burden since phenols are continuing to circulate and the burden is always high. She also thinks that in doing this I'll handle a little bit of phenol exposure (from meals) much better....because my overall burden will be lower.

It made alot of sense to me I actually think it might help alot. I remembered that yeast and bacteria also produce phenols so that could be another reason my bucket would be "full" even if I'm not necessarily eating alot of high phenol foods. So hopefully taking more enzymes throughout the day will help eliminate some of that load.

She wants me to have Anna check into the Epinephrine issue. She said she knows of other patients who have had problems after epinephrine so she wants to see how I test for it. She said it closes up the blood vessels to produce the "fight or flight" reaction and sometimes that reaction is lasting alot longer than it should....although not this long. But still, we dont know what other things may have ocurred while the nervous system is revved up.

I will probably *try* to get a small sample of the epinephrine from the bad dentist people. :ph34r: That way Anna can test it. She'd like to have Anna make me some homeopathic drops for the epinephrine....either that or I can order the drops myself.

She also wants Anna to check my cortisol to see if its too high and she'd like me to start a homeopathic for that as well.

By the way...Donna...she told me that Anna has moved the clinic. She moved into a much nicer space. She has no idea where its located but its not in the mall. :lol: I gotta find out...she said Scott knows where its at.

I'm also gonna try TD-DMPS again to be absolutely sure that I cant tolerate it. Last time there may have been other things triggering symptoms since I was eating different foods. Also, I think if it were causing a yeast flare up it might increase my phenol load but the TD-DMPS itself might not be the problem. Soooo....I'll be smelling like rotten egg as I experiment with it again. :P Last time I applied to upper shoulder/back area.....this time she wants it lower, near the kindeys.

She's glad I took the VCS test and said its good confirmation that Lyme isnt really a big factor in any of this.

She said she'd like to have me do a porphyrin test. I told her I just did it...just dont have the results yet. I asked her if she felt it was a reliable test and she said it appears to be the most reliable indicator available right now. There really isnt a "grey area" with this test...and unfortunately with the hair and urine tests the results arent always clear. Mercury might not show up in a hair test and it might not show up in a provocation test...but when mercury is a problem it is indicated in the porphyrin test.

So the results of this test are going to let us know alot as far as the metals go. Its gonna tell us whether or not we still need to be chasing mercury. The porphyrin test is gonna identify abnormalities caused by mercury, lead and arsenic. If lead is more of a problem then we will need to switch my method of chelation. If the results are normal we will need to look into other things and we wont be focusing on chelating metals.

This is kind of scary to me and I've been pretty anxious about the results the past week or so...and I still have at least another week until the results are in. We just dont know right now how much of a role metals are playing in these phenol issues....and she says the phenols are a significant part of my problem. My reactions are caused by the phenols...but we dont know what triggered it yet.

She is suspicious of the metals because of the timing...all of this started after the dental work and there was alot of exposure to mercury.

Theres a few other tests that she'd like to have done.

First on the list is the Organic Acid Test (OAT). I learned about this test back when I was researching the oxalate/yeast connection and it seemed like a good test. Dr. A. said between this test and the porphyrin test we will learn alot. The OAT will tell us about yeast and other things that could be causing the gut issues.

Heres some info...

Benefits of the Organic Acid Test

Measures 65 important compounds for overall health

Focuses on detecting yeast and bacteria byproducts that have been implicated in many disorders

Requires a first morning urine sample only

Consultation on results is included with each test from The Great Plains Laboratory

Test with the experts - The Great Plains Laboratory holds one patent (*) on this test and two others pending.

The organic acid test evaluates all of the well-defined inborn errors of metabolism that can be detected with this technology (called GC/MS) such as PKU, maple-syrup urine disease, and many others. In addition, we check for many other abnormalities such as vitamin deficiencies and abnormal metabolism of catecholamines, dopamine, and serotonin. We currently quantitate 65 substances, but also evaluate other substances that are not quantitated. Some of the other biochemical abnormalities common in autism include elevated uracil and elevated glutaric acid.

Panel Includes:

Yeast metabolites

Bacteria metabolites

Nutritional deficiencies

Antioxidant deficiencies

Inborn errors of metabolism

Amino acid abnormalities

Fatty acid abnormalities

Exposure to solvent toxins

Deficiencies of B vitamins or vitamin C

Neurotransmitters

Indications of diabetic conditions

Krebs cycle metabolites

Clostridia overgrowth

Glycolysis

Pyrimidines

65 important compounds

If anyones interested theres alot more info. here... http://www.greatplainslaboratory.com/Organic-Acid-Test.html

Also, since my zinc/copper ratio is way off she wants another type of test to look at that more closely. She just wants a regular plasma zinc/serum copper test.

Right now I'm taking 1 normal dose of zinc daily and I was kind of leary of it since I'd read that zinc interacts with mercury and can worsen the mercury problem. Dr. A. said I can increase the zinc...she said plenty of autistic kids with definate mercury toxicity are taking lots of zinc without worsening their condition. So I need to increase zinc to help reduce the copper and it also helps get rid of mercury as well.

She also would like to see a more recent CDSA (stool test)....the last one I did was over 3 years ago.

The last test that *might* be helpful is the Nutrigenomic genetic testing. This is the expensive one and she feels it can provide some info but the testing is still in its "infancy" and theres alot they still dont know. She said we might be able to find where there might be a "glitch" in my system but overall she's not too sure about the test.

So for now I'll hold off on it because its over $600 and then for recommendations based on results its another couple hundred on top. She said she thinks that Dr. M. (who did my LED treatments) has a good understanding of this test and is good at interpreting the results....so I may call over there to find out how useful he thinks it would be.

We talked about how phenols/yeast seem to be related and phenols may be causing kids to have bigger yeast issues. I told her my "fungal" spots on my chest turn dark red when I eat high phenol foods....otherwise they are hardly noticeable. I told her I know for certain the spots are fungal because after having them for nearly two years after 1 pill of diflucin they both disappeared. Had to be fungal since they had never cleared up until the day I took diflucin.

I have one spot again....its been back for over a year now. I told her I dont take diflucin for it since I know its just gonna come back again anyway. She said diflucin is the preferred treatment if my OAT test is positive for yeast. She would test it first...if its ok she would have me on it for 50 days....with one liver test in the middle to make sure everythings ok. She said even though diflucin is suppossed to be hard on the liver she hasnt actually seen it...she said shes actually seen it help the liver instead. :huh:

Oh...we also talked about gluten. I asked her if it would be better for me to remain gluten-free. She was kind of "iffy" on that one and asked if I'd had any positive test indicating that I was reacting to it. I told her my Enterolab results were positive...I had antibodies but I'm not sure how valid the test is.

She wasnt thrilled about my eating it with a positive antibody test but she said I need to be able to eat a few things and for me she would say that fruits and veggies are causing much more harm than gluten. She said the phenols are a way bigger issue for me so if I'm not getting any noticeable reactions its ok as long as I'm taking the enzymes with it. She said there's one she likes even better than what I'm on now. She said she really likes Glutenzyme by Pharmax.

I think I have to stick to AFP Peptizyde since its formulated for those who are sensitive to phenols...and I dont think I'll handle the other enzymes as well. I havent had any problems with AFP Peptizyde.

So thats my very long update. :)

She would like me to get the test results to her asap...escpecially the OAT. She's always in contact with other doctors and they're trying to get this stuff figured out. They are getting close with some things.

This is why I love Dr. A and all of these other Dr.'s who are working so hard to get people well...and especially in putting the pieces of the autism puzzle together. I'm always impressed with Dr. A's dedication and true desire to find answers. :)

I fully expected to be charged for her time today as I thought the appt. was scheduled because she wouldnt be coming to the area this month. I had almost a full hour of her time and she had never intended to charge me! This is another example of how there truelly ARE doctors out there who are in it to HEAL...they are actually doing it for all of the RIGHT reasons....and I feel blessed to have her on my side. :)

She told me that I'm actually helping her. We're trying to figure this stuff out and some of it may help her to get answers for some of these kids she's treating. Some of them have issues that are very similar to what I'm experiencing...the same problems with phenols and the same symptoms around the face. Unfortunately, she cant communicate with them to know exactly what they feel because they are non-verbal.

Since she's been looking into this issue she's noticing it more and more in some of these kids shes treating and also some things are making sense to her about certain kids that she's seen in the past who had these same symptoms and did not do well on certain diets/treatments.

So I'm really praying that something can be learned from all of this and if just *one* kid gets some answers because of it....I would be totally over the moon! :)

P.S....sorry for the monster post. :P

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I got my appointments made for the amalgam removal.

YAY Andrea! :)

I agree....not a "fun" thing to do...but still....YAY!! :D

You've been waiting a long time to get this done.

Paula,

Sorry about the glutening. Major bummer! :(

I hope you feel better soon.

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Sounds like a great consult Rachel.

That OAT test sounds interesting. I'll be awaiting your results on the stuff you have done.....including the porphyrin test.

I'll bet the dentist office will be soooo thrilled to hear from you again. :P

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I'll bet the dentist office will be soooo thrilled to hear from you again. :P

Ya think?? :lol::lol:

Hmmm...*if* they actually allow me in the building to pick up a sample I think I'll bring them the recent article regarding FDA/amalgams. :P

On second thought...I'll bring a whole stack of them. :lol:

Anyways....I seriously doubt they're gonna accomadate me on this one. <_<

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Rachel, and Donna,

I don't know the normal proceedure for the order of amalgam removal, but my dentist takes the quandrant with the biggest reading first.

I was glad to know that I wouldn't have to go up there 10-11 times. :huh: It's a 2 1/2 - 3 hour drive from here.....in Seattle.

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Yup...I'm majorly stressed about the porphyrin results. Amy's right though....either way we're going to know for sure if we need to pursue mercury or not.

I'm looking forward to the OAT...it should tell us alot more about whats going on in my gut. Thats something I've always felt needed more attention. Even if mercury is an issue its still better to clear up the gut issues first. Its harder to get rid of the metals when the gut is still in bad shape. I dont think theres ever really been any question about me having gut issues....just a matter of figuring out what its gonna take to improve that situation.

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