Jump to content
  • Sign Up
Celiac.com Sponsor:


Celiac.com Sponsor:

Archived

This topic is now archived and is closed to further replies.

Rachel--24

Omg...i Might Be On To Something

Recommended Posts

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?

You are welcome, I was intrigued that this could be also acquired.

I am still sick, but a little better today--it's been a rough two weeks. My husband's itchy spots and the spot on his leg finally went away. I keep wondering if was something in the house we were living in while in the USA. I am going to be there again this summer, but in the house next door. If I get it again, I am going to mention this to the people who manage the house. They might need to have the house checked for insects or something.

Sherry

Share this post


Link to post
Share on other sites

Sherry,

I hope the house doesn't have unwanted critters around. <_<

Share this post


Link to post
Share on other sites

Rachel,

I'm supposed to have the OAT test too. I was supposed to have it a while ago, but when they sent me the test kit (the NP) it was expired. :blink: I actually need to call tomorrow and see where it is, because I should have it by now! :)

I also want to ask Dr H about the porpyrin test...keep forgetting! I want to address metals, but I want to give myself a little bit of time with the IV abx. I'll ask him next time I see him...in July.

Everyone,

Ever since I started the IV abx, I've had pretty bad D. :ph34r: It didn't really start until yesterday (day 2) and it hasn't gone away. Sunday morning I had a HORRIBLE attack type thing that felt like severe cramps...but it wasn't. Dr H examined me and said my gallbladder seems fine because it wasn't really painful. I guess I should call him and tell him about the D? I don't want to have to go off the IV's but I guess he needs to know. <_<

Share this post


Link to post
Share on other sites

Hi Rachel,

I appreciated your long post as it gave me some things to research and consider before my phone consult next week.

I noticed this link about the best way to screen for mecury toxicity, and this lab expert mentions he thinks provoked is still better. At least I think that is what he is saying.

http://www.greatplainslaboratory.com/Porph...lippe%20_2_.pdf

Sure hope this helps you figure things out.

Sherry

Share this post


Link to post
Share on other sites

Rachel,

I have a question about the whole sulfur/sulfite diet thing. What are the kinds of sulf... foods are there? Do they ALL need to be avoided? I'm really confused. I was reading about things other than the list of foods Dr H told me to avoid, and now I'm really confused. :lol:;)

Share this post


Link to post
Share on other sites
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.

Julie-

How are you- whats going on with you?

Share this post


Link to post
Share on other sites
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...

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

Rachel-

never apologize for your monster posts!!!!!!!!!!!!!! I know i appreciate your update!!!

Share this post


Link to post
Share on other sites

Rachel, it sounds like a good appt. :)

Kassandra, I read about IV Rocephin before I posted .... diarrhea is listed at as side effect and it says to call your doctor if it's persistent. How about increasing the probiotics first to see if that helps .... even though it's not going through your digestive tract .... with some abx I have to take VSL#3 at least a few times per week.

I had my phone consultation this morning. She has me taking a second Cytomel (T3 thryoid) per day because my T3 is still on the low side. Other than that no changes.

I've really been feeling normal lately except for the two day flare up. I have trouble getting up in the morning, but she said that some people have the Ambien not wear off for several more than the 8 hours (even though it's not there enough to help me sleep through the night).

But that's a catch 22 ... if I don't take them I don't sleep, if I do take them I can't get up easily. For now I'll have to deal with being tired in the morning.

We didn't change anything else. It's clear that my body is liking the new meds because I really feel great again. it took three weeks of feeling really bad to adjust to them, then I started feeling normal again. The heat/sun isn't even bothering me this year.

After I told her how I determined which med was causing me to herx so bad, then how I kept cutting back on the zith to a half dose, then tried the full dose, then back to a half dose until I worked up to the full dose all the time, she suggested I start a support group. :D She said she was glad I worked it out with this med.

Share this post


Link to post
Share on other sites
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.

Great appointment...still hoping to get in to see her when she is here, but I'm not so sure I can even if they call. I have a surgery date of July 21st...if she comes way early in July I could go, or if she comes in late July I might still be able to, but won't be able to drive for a couple of weeks after the surgery... I had no idea Anna moved, lol. Didn't even know they were considering it. :P I've just been thinking I should call for another appointment, but since we don't have anything specific to test for anymore, I keep putting it off.

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.

My dentist did it in quadrants, but I can't remember exactly how he decided which one to do first. He didn't take any readings of anything that I know of, so I think he just based it on where he likes to start. :P

Everyone,

Ever since I started the IV abx, I've had pretty bad D. :ph34r: It didn't really start until yesterday (day 2) and it hasn't gone away. Sunday morning I had a HORRIBLE attack type thing that felt like severe cramps...but it wasn't. Dr H examined me and said my gallbladder seems fine because it wasn't really painful. I guess I should call him and tell him about the D? I don't want to have to go off the IV's but I guess he needs to know. <_<

Yeah, Carla beat me to it, but D is sometimes a side affect of lots of abx...good to let the doctor know...there may be something you can do to calm it down that doesn't involve stopping them.

Share this post


Link to post
Share on other sites

You could still come up here Donna. :D:P I will be driving you so you wouldn't have to worry about driving on this end. :P

Share this post


Link to post
Share on other sites

Thanks for the monster post Rachel :)

Sherry, glad your husband's breakout is gone. Maybe it was some kind of a bug bite?

Kassandra, sorry about the D, I would call your Dr and at least let him know.

Carla, glad you are feeling normal again :D

Andrea, my amalgams were taken out in quadrants too, the more difficult one first.

Ummm, I know I am forgetting something else......can't remember. I'll come back if it comes to me.

Share this post


Link to post
Share on other sites

I knew there was something...

Paula, I thought this article (actually it looks like a webcast?) might be of interest to you. It was in Scott's newsletter for this month. I didn't watch it but the title captured my attention and I thought of you.

I hope the link works ok:

Is Mold Making You Sick?

How are you feeling today Paula, any better after the glutening?

Share this post


Link to post
Share on other sites
Great appointment...still hoping to get in to see her when she is here, but I'm not so sure I can even if they call. I have a surgery date of July 21st...if she comes way early in July I could go, or if she comes in late July I might still be able to, but won't be able to drive for a couple of weeks after the surgery...

She's looking at late July. She's trying to work some things out first and is hoping to be able to come late July. She doesnt know yet so its definately possible you'll be on your feet by the time she comes. ;)

Andrea,

I only had two amalgams when I had it done the right way and so they were just done in the same visit and he didnt explain to me the process.

Share this post


Link to post
Share on other sites

Uggg, I have the WORST stomach ache today! I've been searching my mind for what could have caused it...I haven't had anything different today or yesterday,

and I think I've figured it out...

Caffeine free Diet Coke!

I had one yesterday.

I know, I know, evil death and destruction poison...

I've learned my lesson.

:ph34r:

Share this post


Link to post
Share on other sites
Rachel,

I'm supposed to have the OAT test too. I was supposed to have it a while ago, but when they sent me the test kit (the NP) it was expired. :blink:

Expired!! :blink:

Sheeesh....I dont think I'd ever even notice if my test kit was expired. I never looked at any of my kits....All I can say is I sure hope my porphyrin test kit wasnt expired! :o

I would call Dr. H. and let him know about the D.

Hi Rachel,

I appreciated your long post as it gave me some things to research and consider before my phone consult next week.

I noticed this link about the best way to screen for mecury toxicity, and this lab expert mentions he thinks provoked is still better. At least I think that is what he is saying.

Sherry, thanks for the link.

Yeah....I looked into the test (as much as I could find anyway)....before I took it. Like everything else there seems to be some discreprencies but probably about 90% of what I read was positive regarding the accuracy of the test. There was even a PubMed article on studies showing that these specific porphyrins are elevated in the presence of mercury toxicty (or lead and aresenic to a lesser degree).

There seems to be some pretty clear evidence that the porphyrins a good biomarker for detecting mercury toxicity.

Mostly, I like to hear from the dr.'s who are using the tests and what their experiences are with it. Does it seem like an accurate test? Are you finding it useful? Are there changes in the porphyrins as a direct result of chelation? etc. etc. Those are the kinds of questions I asked Dr. A. last night at it was all positive.

Also, if I see that alot of Dr.'s are using a certain test I tend to think there's a good reason...I know they arent really too gung-ho about tests that dont provide useful info. So I'm just crossing my fingers on this one. :)

Rachel,

I have a question about the whole sulfur/sulfite diet thing. What are the kinds of sulf... foods are there? Do they ALL need to be avoided? I'm really confused. I was reading about things other than the list of foods Dr H told me to avoid, and now I'm really confused. :lol:;)

Hmmm....what were reading about that has you confused? I'm not too sure about what other foods you might be talking about?

There's alot of sulfur containing foods and you'd definately want to avoid them to do the diet correctly. It wouldnt be like a reaction to each food everytime you eat it. You might actually feel fine after eating a restricted food...but if you arent metabolising the sulfur properly...a little bit here and there could cause problems once you reach a certain level in your body (whatever your threshold may be).

Thats exactly how things happen with me....especially with the phenols.

Share this post


Link to post
Share on other sites
the WORST stomach ache today!

and I think I've figured it out...

Caffeine free Diet Coke!

I had one yesterday.

OMG!! :o

I think I'm at a total loss for words this time. :huh::lol:

Donna...yeah...remember the "WORST stomach ache" next time you get tempted by the evil death and destruction poison. ;)

Share this post


Link to post
Share on other sites

i glanced at some german and swiss pyroluria sites some months ago, but I did not study it. Seems like there are several forms, some inborn, and some aquired, and some only appear when under stress. Before testing, one must not take b-6 or zinc I think I remember.

I tried taking some zinc and b-6 just to test if I noticedany difference and i did get the vivid dreams that are reported, but i stopped because i am not so sure I have it. But I take a ittle zinc sometimes, or I use some sun screen based on zinc. (one should not use the other kinds, as they lower thyroid, Mary Shomon had an article about that last year). I feel some improvement from a little zinc (but i do not want to drive the mercury further in so i only take it sometimes) and from spirulina amongst other things. I have no quick way to get a test for puroluria done.

http://www.kryptopyrrolurie.info/index.html in German, the websites and forums are very thorough and it seems like a big issue and they discuss it regularly at the thyroid forums.

nora

Share this post


Link to post
Share on other sites

Everyone,

Im feeling alot better physically from my glutening. But emotionally im a basket case. Between my aunt and now finding out one of my best friends has breast cancer. Plus im having the terrible mood swings still from the gluten. I am just hoping the mood swings end soon lol

Julie,

Thanks for the link. I will look at it later on tonight when i go buy new speakers for my puter lol.

There was alot of other things i wanted to commit on, but i need to get back to gardening.

paula

Share this post


Link to post
Share on other sites
I know, I know, evil death and destruction poison...

Definately agree with this statement!

Hope you feel better real soon.

Paula,

Hugs. :wub: Sorry for all you are going through. :(

Share this post


Link to post
Share on other sites
Kassandra, I read about IV Rocephin before I posted .... diarrhea is listed at as side effect and it says to call your doctor if it's persistent. How about increasing the probiotics first to see if that helps .... even though it's not going through your digestive tract .... with some abx I have to take VSL#3 at least a few times per week.

....

I had my phone consultation this morning.

I will talk to my mom about buying VSL #3. I didn't get the D today during the infusion, and I was going to say I didn't get it after...but I don't know. (I had another high colonic, so I wouldn't know! LOL! :lol: )

The colon hydrotherapist said that my food is coming out the same way it's going in. :( I knew that was happening. I'm not absorbing my food...

I would call Dr. H. and let him know about the D.

...

Hmmm....what were reading about that has you confused? I'm not too sure about what other foods you might be talking about?

I will wait until tomorrow after the infusion and call Dr H if it's still happening.

I was reading about sulfur/sulfite and sulfate containing foods. I don't know if I need to avoid them all or what. I feel that it's like being gluten free...you gotta get ALL gluten out to notice the benefits.

It's not so much specific foods, but additives to things. For example, we use canned olives for salads sometimes, would these have to be avoided? Can I really have NO canned foods or frozen fruit for smoothies?

Share this post


Link to post
Share on other sites

Kassandra, didn't they tell you that you had parasites? My food stopped coming out whole when I got rid of the parasites. :) I used to have that .... pretty much everything was identifiable .... that's why I like smoothies!!

The VSL#3 really helps me a lot. I hope it does the same for you .... it's really expensive. :(

Share this post


Link to post
Share on other sites

Glad to read everyone's updates. I'm working on a list of possibilities to discuss with my LLMD next Monday in my phone consult.

Meanwhile, I think I'll order a second round of Humaworm, ART tested really well for that last winter.

Carla glad you are through the herx and doing well.

Nora thanks for that info; I didn't have enough symptoms on the symptom list for that so I don't think that is an issue for me.

I am now re-thinking doing that biotoxin test you all did awhile back. Need to find the link though.

Kassandra, my food digestion seems somewhat better after all the digestive aids I am taking, but sometimes I notice that the output seems the same as the input, LOL! I agree with letting the doctor know about your D, and also about the probiotics.

Sherry

Share this post


Link to post
Share on other sites
It's not so much specific foods, but additives to things. For example, we use canned olives for salads sometimes, would these have to be avoided? Can I really have NO canned foods or frozen fruit for smoothies?

Yes...you would really have to avoid these things. Sulfur is naturally occuring in garlic, onions, eggs and all of those foods which are on the list. Sulfites are even more problematic because they are a chemical. Sulfites are a preservative and if you're body cant tolerate them they will build up quickly.

MOST processed foods contain sulfites (even if not labeled)....so if you continue to take them in through your diet you wont really be clearing them out of your system. You can use fresh fruit for your smoothies...just not grapes.

Fresh foods are ok....canned fruits and veggies are likely to contain sulfites.

Avoid:

Share this post


Link to post
Share on other sites
Guest
This topic is now closed to further replies.

×
×
  • Create New...