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Omg...i Might Be On To Something

Rachel--24

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CarlaB Enthusiast
CarlaB
Posted

Kassandra, with all you've said the past couple days, I have to agree with Andrea. Lyme would certainly explain why your young body is not working properly. The dietary stuff won't hurt .... I'm also type A and did very well with proper food combining. I still somewhat combine properly, but I put fruit in my whey protein shakes ... and sometimes eat carbs with protein.

I also agree that you should find out who is Lyme literate where you are. Honestly, it doesn't sound like this guy thinks Lyme could be the root cause of all these problems, what he's doing is treating the symptoms, which needs to be done, but you've also got to get to the root of the problem.

With your abx sensitivity, you're fortunate to be on the West Coast rather than the East ... they've seemed to have developed two different, but compatible, philosophies in treating Lyme ... you are where they use abx more sparingly, in general.

How long did you live in NZ? Just curious.

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confusedks Enthusiast
confusedks
Posted

Andrea,

I agree it is Lyme. It is my mom who is almost impossible to deal with about this! She thinks that this guy is completely right and there is no point in seeing an LLMD. She did agree to get the Igenex test (Western Blot only) and see what it says. I did tell her though that there are people who do have Lyme but because their immune systems are so down that they show up negative because they can't even make the antibodies. I guess I'm going to have to have to wait and see.

As far as the liver, he told us a place that gets them without hormones, etc. At this point, I don't know what to do because my ferritin is dangerously low. He said that liver is the only thing that is actual ferritin, so my body won't have to convert it from iron to ferritin which it is having a hard time doing. Any other ideas?

The fires have been horrible. I am far away enough to not be in danger, but I know a lot of people who have been affected, sadly. :( My best friend was watching them to make sure they didn't get too close. Also, the air quality has been TERRIBLE! I have had a headache since they started. It has been horrible! I have been so out of it though, that I didn't know they were even going on until I got a pedicure on monday! :o They had the news on so I saw it then and was quite shocked! See, brain fog SUCKS! Lol.

Carla,

I agree with Andrea also. We will see how the food combining stuff goes. I had beans and...bad reaction. I got really crampy, etc. It seems more and more intolerances are building. I almost don't want to get my diet cleaner and simpler because then the road gets more and more narrow.

He is treating symptoms and not getting to the root. I used to accept this stuff, but not anymore. I am glad I live on the West Coast, I guess. And I posted on Lame Advertisement to see if anyone responds.

I live in NZ for about 9 months. I didn't like it at all, so I came back to live with my mom. My dad and stepmom still live there. My stepmom is from there, but lived here for 10 years to be with my dad. Then he had a midlife crisis...lol...and moved! :lol:

One last thing, have you posted your "fudge" recipe? If you have can you direct me to where it is?

Kassandra

melmak5 Contributor
melmak5
Posted

Ok ladies and gents...

I got a call from a doctor (not mine) that my labs are in and that everything is near perfect. (thyroid, hormones, blood count, lyme negative)

The exceptions:

It appears that I had mono in the past (which I did, when I was 17) but there is no current infection

-My IgG levels are elevated, indicating an allergic reaction

-My "celiac antibodies" are still elevated

I won't have the exact figures, or be able to compare them to my previous tests until next week, but I have been gluten free for over four months, are elevated antibodies levels typical during this "phase."

Is there something else I should be asking for/looking for?

NOTHING is too stranger or bazaar at this point, bring it on.

confusedks Enthusiast
confusedks
Posted

melmak,

Are you getting CC'd by any chance? Are all of your meds/ beauty products (eg, shampoo conditioner, etc.) gluten free? I am sure you have already heard this, but just thought I would throw it out there. I hope you can get some answers.

Kassandra

AndreaB Contributor
AndreaB
Posted
I agree it is Lyme. It is my mom who is almost impossible to deal with about this! She thinks that this guy is completely right and there is no point in seeing an LLMD. She did agree to get the Igenex test (Western Blot only) and see what it says. I did tell her though that there are people who do have Lyme but because their immune systems are so down that they show up negative because they can't even make the antibodies. I guess I'm going to have to have to wait and see.

You're in a tough spot if your mom won't let you see a LLMD. For your sake, I hope the Igenex comes out clearly positive. I would hope that would convince you mom that lyme is wrecking havoc with you.

Please keep us posted on that testing. I know it will take a couple weeks after you send it in.

I'm glad you're not near the fires. I can imagine how bad the air is. It's got to be unbearable where you are. :(

AndreaB Contributor
AndreaB
Posted
melmak,

Are you getting CC'd by any chance? Are all of your meds/ beauty products (eg, shampoo conditioner, etc.) gluten free? I am sure you have already heard this, but just thought I would throw it out there. I hope you can get some answers.

Kassandra

I was going to say the same thing. :)

I'd be curious as to what the difference is in the numbers. With 4 months in, they should be coming down, I don't know how fast they are supposed to return to normal though.

melmak5 Contributor
melmak5
Posted

Thanks, cc is a good point but I think its an absolute impossibility.

-I have separate utensils/contains, I use a clean dish towel for the counter and doing my dishes (my roommates stay away and are respectful)

-I changed all of my hair/face/beauty stuff a few months ago... even though I think it was not a possibility

-I left my job at a bakery back in early July

-My roommates do not use wheat flour when I am in the house (we have a MUST CALL KRISTINA 1st policy)

-I am eating 10 foods as of late, all which I prepare at home (utz potato chips were the exception, but they are now out of rotation)

-The baby formula, which is my staple, is gluten-free and hypoallergenic

-Zyrtec, Benadryl, Calcium/Magnesium Citrate, Aloe Vera Juice, Gycolax are all gluten free

With the exception of building myself a bubble, I don't think its human possible for me to be MORE gluten free.

(I even chastised someone at work for eating pretzels near my desk)

Hopefully the numbers will be telling. My allergist had a theory that if the numbers have not gone down, that maybe I have/had a virus, which caused the reaction(s) in the first place. At this point I am hoping for a virus or a partially prolapsed bowel because I am running out of guesses/ideas/patience.

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melmak5 Contributor
melmak5
Posted

Oh, and I am not pregnant, for the 5th time in 3 months they told me that.

To which I respond, "yeah, I know, thanks."

I also don't have syphilis... HUGE relief. ;)

AndreaB Contributor
AndreaB
Posted

Kassandra,

I wanted to add that I don't think your mom is out of the ordinary. My mom wouldn't be too keen on a lot of stuff either and if I was your age I'd have troubles too.

Kristina,

Did you have metals testing at all? Are your vitamin and mineral levels ok? I suspect not, since you've recently been diagnosed with celiac and have leaky gut. I'd say metals, viruses or still possibly lyme (after you exhaust everything else maybe you could test through Igenex).

I don't have any ideas, except that something is going on to cause all the food problems and whatever else you are dealing with.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Kassandra,

Why did I think you had low iron?? :unsure:

Apparantly I wasnt too focused cuz I totally thought you had low iron...but apparantly you have HIGH iron....in that case my whole post to you made no sense. :rolleyes:

Anyways, I agree with whats already been posted. The Dr. is treating the symptoms but not getting to the root cause.

Theres alot going on and treating those things can definately help but I think you deserve a Dr. who can identify the root cause and hopefully get you well with treatment.

Its important to trust your gut instinct and it sounds like you know inside that theres more to it than what this Dr. is saying.

I agree with the others and would highly suspect Lyme and co-infections in your case.

I have to say that I think you've come along way in a short time....with that kind of determination I have no doubts that you will get your answers. Hang in there...you're a strong girl. You just need the right Dr. now. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
-Zyrtec, Benadryl, Calcium/Magnesium Citrate, Aloe Vera Juice, Gycolax are all gluten free

How long have you been taking the aloe vera juice?? I had alot of problems from aloe vera juice...the brands I tried all had citric acid (which comes from aspergillus fermentation).

Its probably a long shot but if you've been taking it this whole time it cant hurt to eliminate it and see how things go.

confusedks Enthusiast
confusedks
Posted

Rachel,

You are right, I have low ferritin (the little things that distribute iron) but I have normal iron. This is a problem because the iron has nowhere to go if there isn't anything to take it where it needs to go.

I am trying to be determined but it is hard because I am just SO tired! I got up this morning at 5 to go to school but then by the time 6.10 came around I was too tired so I had to get back in bed. Then I slept until 10.30 which is when I had to then go to the Dr. Keep in mind I went to bed at 8 last night!

Edit: Where did I say I thought you had low iron? :blink: I didn't mean that, I never thought that. I'm pretty out of it these days.

Kassandra

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Ok...my IV went alot better this week. :D

I guess thats probably because I didnt actually have an IV. :P

Andrea, sorry I had to rush off the phone...as soon as I answered they called me to the nurses station.

So I never got a call back today but when I got there the nurse explained that Dr. S. decided to not give anything but the DMPS for today.

Since I reacted to vitamin C (or something else) in the IV he didnt want to include it today...mainly because if I were to have any problems with the DMPS they wouldnt be able to determine that if the IV minerals, vitamin c and glutathione were included. We wouldnt know what was causing the reaction.

I think they will be doing each thing seperately in order to determine what I reacted to in the IV.

So today I went through with the test and had no problems with the DMPS at all. :D

They gave me the smallest amount...it was only 1 cc. I didnt have to sit for a long time since I wasnt having the minerals and everything else. It was just a quick push of DMPS.

It was a baby dose but they said its sufficient for the test. The maximum dose is 5 cc. The nurse said this was the quickest IV shes done in a LONG time.

Yeah...its baby steps as usual for me...but thats ok...I'm pretty much used to it by now. :P

Before I got the DMPS they shot a small amount of it under my tongue and I had to sit and wait for 15 minutes to be sure that I didnt get any reaction to it. Everything went fine today. :)

After my DMPS push...they did another push of something I'd never heard of until today. I have no idea how it was spelled so cant even look it up. I told the nurse I'd never heard of it and she said that its a homeopathic antihistimine (like benadryl) that they use with DMPS to calm down any reactions. She said it works really well for alot of different things.

I told her I could probably use some every time I eat. :P

So now I'm doing the orange jug thing again. Good thing I'm off work now. :lol:

I *hope* that we'll see some metals coming out....I'm keeping my fingers crossed but I wouldnt really be surprised if the results dont show it. It seems like my body wants to hold onto stuff.

Maybe it just seems that way right now because the load is still heavy and I'm still holding onto yeast and molds...hopefully the metals really are leaving little by little.

Guess I'll find out more in a couple weeks. I'm scheduled to see Dr. S. the 2nd week of November...we will go over the results and discuss furthur DMPS treatments based on whatever the results show.

But HEY...remember when he was telling me that DMPS was WAY WAY down the road for me??

Well....it looks like I made it!! :D

It doesnt seem like it took that long!! I guess its been close to a year but it went by FAST!! :blink:

Mia....its Doctors Data. Did you say the results come back sooner than 2 weeks??

AndreaB Contributor
AndreaB
Posted
Ok...my IV went alot better this week. :D

I guess thats probably because I didnt actually have an IV. :P

Andrea, sorry I had to rush off the phone...as soon as I answered they called me to the nurses station.

I'm glad it went ok today.

No problem about the phone call. I'm low on minutes but just wanted to find out what time your appointment was. :)

Has it been a year already? :o Somehow I was thinking you started seeing him in February.

Great news about discussing further DMPS's for you. :D

Did you ever hear back from Andreanna?

jerseyangel Proficient
jerseyangel
Posted

Rachel,

Happy to see your appt went well--baby steps...baby doses :D

You're getting there!

Everyone--

We're leaving tomorrow--we'll be in a hotel until Tuesday, but they have internet access, so I will (hopefully) be popping in. Take care and I'll see ya all soon :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Has it been a year already? :o Somehow I was thinking you started seeing him in February.

Did you ever hear back from Andreanna?

Yeah....its been a little over a year since my first appt. with Dr. S.!!

It was last Sept. that I saw him and got all the Igenex testing done. He sent me to see Anna in October/November. I started seeing Amy in March....then Dr. M. just a few months ago for the LED's.

Hard to believe at the start of this thread I didnt have any of these Dr.'s. and I was thinking I could eat dairy. :huh:

Thats actually pretty funny to me now....and yup...I ate PLENTY of dairy! :lol:

Andreanna hasnt gotten back to me. I think I might have sent the email to the wrong place. :rolleyes:

I'm gonna resend it.

We're leaving tomorrow--we'll be in a hotel until Tuesday, but they have internet access, so I will (hopefully) be popping in. Take care and I'll see ya all soon :)

Patti...good luck with everything!! I hope you get some time to pop in. :)

AndreaB Contributor
AndreaB
Posted
We're leaving tomorrow--we'll be in a hotel until Tuesday, but they have internet access, so I will (hopefully) be popping in. Take care and I'll see ya all soon :)

Hope all goes smoothly with the move. :)

Andreanna hasnt gotten back to me. I think I might have sent the email to the wrong place. :rolleyes:

I'm gonna resend it.

I'm just a tad bit impatient, since the reality of getting to meet you in person is much more real. :D

confusedks Enthusiast
confusedks
Posted

Patti,

Good luck with moving, etc.

Everybody,

When we all get "well" we need to have a reunion! That would be so much fun!

Kassandra

Judyin Philly Enthusiast
Judyin Philly
Posted

hi all

came on to see how your IV went rachel..........so happy it went well for you

good luck with the move patti.............you'll be settled in soon and in pa.........yeah.

judy

miamia Rookie
miamia
Posted

Rachel-

I think that was a really great way to do the DMPS. Very smart. I ahve to admit sometimes i wonder if even the glutathione they give me bothers me I discussed that with the nurse this week.

I am so happy you have made such progress.

I did go through doctors data and they took more like a week than two which is good because I am impatient when it comes to test results. I cannot wait to see what your test shows.

Oh I also just have lipoic acid it is by ortho molecular products. The women who does the muscle testing tested me for it and i tested well for it so i think i might add it this week.

I got some test results back yesturday from some blood work i had done this week but i have not gotten to speak to my doc yet so i don't really know what any of it means. I also had my mineral levels tested but those aren't in yet I really want to know how I am doing in this department i am praying they come back fine becasue I really don't want to add any more supplements right now.

PAtti-

good luck with the move

Andrea-

are you feeling any better? just baking soda in water is supposed to be alkalizing my doctor reccomended this to me. He also said if i am having an allergic reaction this is a good thing to take.

miamia Rookie
miamia
Posted

Carla-

Can i ask you how often you do enemas? I do them occasionally but just warm water i am just wondering if i should do them more often I know they have helped you alot. I hope Chloe is feeling better.

CarlaB Enthusiast
CarlaB
Posted
I got a call from a doctor (not mine) that my labs are in and that everything is near perfect. (thyroid, hormones, blood count, lyme negative)

Is there something else I should be asking for/looking for?

Yes, ask for a copy of the results. :) My doctor told me my Lyme test was negative when it was clearly positive. Also, with the Lyme test, most doctors will use the CDC tracking criteria, which was never meant to be used for diagnostic purposes (even says so on CDC site). LLMD's will diagnose when you have symptoms and at least one positive Lyme-specific band ... I mean, if you don't have Lyme, you wouldn't have that antibody, right?

I can't remember, where you tested with IGeneX?

Sometimes things can be in the "normal" range and you can still feel bad. My thyroid is in the normal range, but it's very low in that range so my doctors started me on Armour thyroid and it's helping.

Carla-

Can i ask you how often you do enemas? I do them occasionally but just warm water i am just wondering if i should do them more often I know they have helped you alot. I hope Chloe is feeling better.

I think it's specifically the coffee that helps me ... I don't have any trouble "moving" :):ph34r:

I do them almost every day .... at least 5-6 days per week. I think they really help with the detoxing.

Since Dr. H told me last time I was in NY that I could stop the Cholestyramine since my diarrhea was gone, I recently did .... three days ago I started taking 3 chlorella in the afternoon away from everything else. I have felt nothing. I guess that's good.

CarlaB Enthusiast
CarlaB
Posted

fudge-

1 cup cacao beans (ground in coffee grinder)

2 cups almond butter (I use raw)

8 tbsp. coconut oil

1/4-1/2 cup agave syrup (I use 1/8 cup)

2 tsp. vanilla

salt

Mix all ingredients with hand blender. Pour in greased dish. Freeze 30 minutes, then move to refrigerator. Keep refrigerated (it's not a "take with you" snack).

confusedks Enthusiast
confusedks
Posted

Carla,

Thank you for the recipe. I had a feeling it had nuts in it! GRRR! :angry:

Thanks though!

Kassandra

AndreaB Contributor
AndreaB
Posted
Andrea-

are you feeling any better? just baking soda in water is supposed to be alkalizing my doctor reccomended this to me. He also said if i am having an allergic reaction this is a good thing to take.

I'm doing much better. Seth's bottom is not, so I'm thinking he's reacting to something I'm taking to get rid of this infection. :(

I did the cranberry juice with oregano oil 3x yesterday along with the pau d'arco the 2x (which I had already been on). Somehow, I suspect the oregano oil as the bothersome thing with Seth, but who knows, maybe it's unrelated.

Can't wait til you talk to your doctor and can tell us what your test results are and mean. Maybe they could do what Rachel's doctor is going to do by testing one IV thing at a time to see what you tolerate and don't tolerate.

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      how much gluten do I need to eat before blood tests?

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      how much gluten do I need to eat before blood tests?

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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