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Omg...i Might Be On To Something

Rachel--24

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Calicoe Rookie
Calicoe
Posted

Thanks Carla. I will definitely stay with you guys. If it wasn't for this thread, I would be in the depths of despair because I wouldn't have a clue as to why I was suddenly allergic to almost EVERYTHING. Thanks so much for the warm reception and this thread!

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mftnchn Explorer
mftnchn
Posted
Thanks Carla. I will definitely stay with you guys. If it wasn't for this thread, I would be in the depths of despair because I wouldn't have a clue as to why I was suddenly allergic to almost EVERYTHING. Thanks so much for the warm reception and this thread!

Welcome, Calicoe! I am glad you have received help here and hope you stay and keep posting. We have learned so much from each other.

I was allergic to almost everything early on in my illness. Looking back it was probably lyme that tipped the scale, but I am guessing the celiac goes way back too. I limped along by learning to be careful about foods and especially chemical exposure. Then made more progress after being treated for amoeba and facing some emotional issues that I had repressed for a long time.

However, the joint/muscle/nerve pain worsened year by year with spells of major fatigue even though the allergies got more manageable. Lyme treatment has made a huge difference.

When I went gluten free and milk free in 4/07, my allergic sensitivity resurfaced. Finally after about 4 months I did an elimination diet, and removed soy, peanut, and went corn lite. The allergies have settled down now, except my inhalent allergies which I treat with serums have needed adjusting with some sudden symptoms.

This isn't scientific, but my sense is that the lyme, parasites, heavy metal toxicity and celiac caused the allergy and then repressed it. My immune system is in the process of waking up and resetting itself. The latest thing for me is starting the SCD approach, and this is looking pretty promising right now. I'm able to use some dairy now, but no starchy vegetables and no grains. Over the last year I have gotten rid of some worms as well, and am trying to keep addressing this as I think it is part of the problem.

I'm also working on major deficiences and metabolic blockages, hoping that I am now able to detoxify better, so am restarting chelation.

Hope my story gives you some hope and some ideas!

Sherry

CarlaB Enthusiast
CarlaB
Posted

On the subject of digestive enzymes (sort of). Do you remember when we saw a study that VSL#3 was being experimented with to see if it could be used to make new gluten-free products since it seemed to break down gluten?

I was taking VSL#3 daily for months. Then I switched to every other day. I was taking it as needed (whenever I would have a loose stool). Now I'm only taking it once or twice per month. I wonder how much getting these probiotics back into my intestines has played a part in my tolerating gluten again. Just something I was thinking about .... seems these good bacteria may be a help in digesting the gluten, too.

I used to use Glutenease when we traveled because we ate out so much. It helped, though I never know when I got glutened ... that means it worked. (Of course, I don't have celiac).

Calicoe Rookie
Calicoe
Posted

Yes, thank you. This thread has got me thinking, but I am still struggling to maintain a diet and change a lifestyle, so it is slowly coming along. In addition to the emerging food and gut issues, I also noticed this year that I have chemical sensitivities to household cleaning solutions that I didn't have before. They make my eyes and lips swell, and give me a weird chemical burning feeling inside of my body. Sometimes I can't breathe after the use of bleach. So, I still have a long way to go to figuring everything out.

mftnchn Explorer
mftnchn
Posted
Yes, thank you. This thread has got me thinking, but I am still struggling to maintain a diet and change a lifestyle, so it is slowly coming along. In addition to the emerging food and gut issues, I also noticed this year that I have chemical sensitivities to household cleaning solutions that I didn't have before. They make my eyes and lips swell, and give me a weird chemical burning feeling inside of my body. Sometimes I can't breathe after the use of bleach. So, I still have a long way to go to figuring everything out.

That seems to fit the picture.

CarlaB Enthusiast
CarlaB
Posted

This article is a must read. Open Original Shared Link

I was Googling about Lyme, autoimmunity, and cytokines. My LLMD told me cytokines seemed to be responsible for my symptoms and that anything I do to increase my immune system or kill off the intracellular Lyme makes me feel worse because of this, so he changed my protocol to address this.

Anyway, this article is primarily about MOLD. It also addresses Lyme toxins .... and even tells why we get sensitive to GLUTEN!

This article sums it all up beautifully.

Green12 Enthusiast
Green12
Posted

Welcome Calicoe :)

On the subject of digestive enzymes (sort of). Do you remember when we saw a study that VSL#3 was being experimented with to see if it could be used to make new gluten-free products since it seemed to break down gluten?

I was taking VSL#3 daily for months. Then I switched to every other day. I was taking it as needed (whenever I would have a loose stool). Now I'm only taking it once or twice per month. I wonder how much getting these probiotics back into my intestines has played a part in my tolerating gluten again. Just something I was thinking about .... seems these good bacteria may be a help in digesting the gluten, too.

Carla, I had a thought too. Not sure if there is anything to it or not, but I have been researching the benefits of whey protein. I don't know if you all remember me asking about it a few months back but ever since I started having whey protein shakes a couple times a day I felt some cleansing/detoxing action, so I thought I should look into what might be happening.

Anyway I can't seem to find the link now, but I was reading an article about how healing whey protein is for the digestive processes (in fact restoring and balancing intestinal flora), improving assimilation and elimination just to name a few. I am noticing big improvements in these areas.

I wonder since you were having the whey smoothies as well for a long stretch how much that contributed to getting your digestive issues more balanced so that you are able to tolerate eating normally.

Like I said, just a thought.

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aprilh Apprentice
aprilh
Posted

Today is 2 weeks from when IGgenex received the tick. They said about 2 weeks. Hopefully, I will have something in the mail.....

CarlaB Enthusiast
CarlaB
Posted

Whey protein is great stuff Julie. :)

AndreaB Contributor
AndreaB
Posted
Morning everyone! Nothing much to say...no outings planned today, lol. Just sitting here typing with ice on my foot. :P

Ice! Burr, don't like ice, unless it's on my forehead. How are you feeling?

This article is a must read. Open Original Shared Link

I was Googling about Lyme, autoimmunity, and cytokines. My LLMD told me cytokines seemed to be responsible for my symptoms and that anything I do to increase my immune system or kill off the intracellular Lyme makes me feel worse because of this, so he changed my protocol to address this.

Anyway, this article is primarily about MOLD. It also addresses Lyme toxins .... and even tells why we get sensitive to GLUTEN!

This article sums it all up beautifully.

Got it saved over......don't have time to read through it right now......hope I don't forget about it though. :)

Today is 2 weeks from when IGgenex received the tick. They said about 2 weeks. Hopefully, I will have something in the mail.....

Hoping.........

dlp252 Apprentice
dlp252
Posted
Ice! Burr, don't like ice, unless it's on my forehead. How are you feeling?

Feeling pretty good. It's been really hard just laying around on the couch (who would have thought that would come out of MY mouth, lol). I'm slightly worried that my incision isn't healing well...I see the doctor tomorrow so he'll get a good look to make sure. I'll be glad when this is healed a bit more and then I can focus on the next surgery, lol. :rolleyes:

AndreaB Contributor
AndreaB
Posted
I'm slightly worried that my incision isn't healing well...I see the doctor tomorrow so he'll get a good look to make sure.

It seems we always worry a bit until we have confirmation everything is healing well.

ShadowSwallow Newbie
ShadowSwallow
Posted

Jin,

I'm glad things are going well with Dr. D! He seems to be just what you need right now. :)

Donna,

Sorry about the results from the biopsy, but it's glad to know now. Hope that upcoming appointment with the surgeon goes well. :)

Paula,

We used to have hamsters, a male and a female, and wanted to breed them. Never got around it it, and we ended up having to give them away because of allergies. They were adorable, though. So kind and sweet and they had their own personalities. We'd put them in their balls and they'd follow us around the house and come when we called. Darn, I miss them. I wanna get a goldfish now. :lol:

Sherry,

Which test did you have to determine your Vit D levels were low? My levels are fine on the bloodwork from LabCorp, but I can't help but wonder, since I have so many problems with my immune system.

Carla,

Did you end up sending out an update? I didn't get it. :huh:

Calicoe,

Welcome! Sorry you're having those problems, but I hope you find some answers here. :D

Everyone,

Sorry to be MIA for a while. :P Life has been way too busy. :rolleyes:

I saw my naturopath two days ago. Rather uneventful, except for we found out that my hormone levels are all screwy (high estrogen and very low testosterone), and that my cortisol levels are very inappropriate. I finally wake up a night. I kinda new that already, though. She adjusted the times when I should take my supplements, etc. Should help.

Yesterday I saw the LLMD. He upped the levels of my current meds (zith and dorxy) by 50%, and recommended a bunch of supplements. Particularly Quercitin. It's a flavanoid that is supposed to inhibit the breakdown of mast cells. Should help my allergies. He also gave me a sleep aid. Definitely have been needing that recently. :P:rolleyes:

I think that's about it. Life's been too busy, so I need to rest up and prepare for school and college application stuff. Eep!

Birdy

aprilh Apprentice
aprilh
Posted
This article is a must read. Open Original Shared Link

I was Googling about Lyme, autoimmunity, and cytokines. My LLMD told me cytokines seemed to be responsible for my symptoms and that anything I do to increase my immune system or kill off the intracellular Lyme makes me feel worse because of this, so he changed my protocol to address this.

That was a very interesting article. What/how did he change the protocol? Is he using a mold toxin binder instead?

CarlaB Enthusiast
CarlaB
Posted

Birdy, I haven't sent it out yet .... but I think I can tell you the gist of it here .... it's mostly herbal.

April, he took me off things that cause my immune system to produce the cytokines ... like the Zith, Cumanda, and the Transfer Factor. Cytokines are what make you feel sick when you have the flu, for example. So, since I'm achey and tired, but my other Lyme symptoms are gone, he thinks that's my problem.

We're not giving up on the Lyme ... I'm on andrographis, resveratrol (just ordered it), and Samento ... those are new (except for the Samento).

Since he took me off abx, he put me on Malarone (Mepron needs abx) and Lariam for the babs, he's still concerned about babs. I'm also on art and Enula.

Still on parsley, and take burbur as needed for detox.

He also wants me to keep taking the ALA and NAC, keep drinking whey protein, and he added a liquid glutathione (very nasty).

He changed my cytomel to a time released one to try to help with the fatigue.

He tested me for fibromyalgia and I do have it (shocker, not). He prescribed Lyrica because it should help me sleep at night and help with the fibro pain (but the detox will help the most with the fibro pain).

Well, I think that's about it. I'll still need to send out an update to email family/friends, so let me know if you want the long version ... it's the same stuff, but I'll explain it better. :) I don't think I left anything out, but I'll be more detailed in the email, with dosage, etc.

AndreaB Contributor
AndreaB
Posted

Carla,

I always like email updates when they are sent out......hope you know that. :)

Birdy,

Good to have another update from you. Hope the supp/med adjustments help you.

CarlaB Enthusiast
CarlaB
Posted

I sent out an update .... let me know if you didn't get it and want it. :) Send me your email address if I don't have it already.

Green12 Enthusiast
Green12
Posted
I saw my naturopath two days ago. Rather uneventful, except for we found out that my hormone levels are all screwy (high estrogen and very low testosterone), and that my cortisol levels are very inappropriate. I finally wake up a night. I kinda new that already, though. She adjusted the times when I should take my supplements, etc. Should help.

Yesterday I saw the LLMD. He upped the levels of my current meds (zith and dorxy) by 50%, and recommended a bunch of supplements. Particularly Quercitin. It's a flavanoid that is supposed to inhibit the breakdown of mast cells. Should help my allergies. He also gave me a sleep aid. Definitely have been needing that recently. :P:rolleyes:

Hi Birdy :)

Thanks for your update, I hope all the adjustments and changes with your supplements and meds help you.

I am taking Quercitin as well, how much does he have you on? I am considering switching to Curcumin, I am undecided though and need to look into it more

Carla, the LEAP allergy test I did addresses cytokines being released from the immune cells. I have really noticed a difference in the last two months now that all of that over immune activity has settled down.

CarlaB Enthusiast
CarlaB
Posted

What did you do to settle the immune activity Julie?

dlp252 Apprentice
dlp252
Posted

Thanks for the updates Birdy and Carla! Carla, thanks for the email! It was very interesting!

Today's outings...I went down to get my mail and then started my car, woohoo! :lol: Two more pieces of steristrips came off! Later, my appointment with the foot doctor, wow...more excitement than I've had in 3 weeks, lol. :P Oh, and my neighbor (who has been ignoring the aftermath of the kamikazi destructo squirrell) finally filled his bird feeder this morning. :lol:

On a serious note...my incision really doesn't look like it's healing in my opinion so I'm glad I have my appointment today.

AndreaB Contributor
AndreaB
Posted
On a serious note...my incision really doesn't look like it's healing in my opinion so I'm glad I have my appointment today.

I'll be waiting for an update. Hope that is just doesn't look good and that it actually is healing well.

T is at Grandma's til Saturday so we have a mini school break. :)

Green12 Enthusiast
Green12
Posted
What did you do to settle the immune activity Julie?

This is from my booklet:

The MRT LEAP test quantifies how strongly your immune cells react to the food chemicals tested by measuring intracellular mediator release indirectly. When released from immune cells chemical mediators such as cytokines, histamine, and prostaglandins produce damaging effects on body tissues leading to development of symptoms.

So by identifying those foods and chemicals that cause the release of cytokines, histamine, and prostaglandins, and then staying away from them has allowed for my immune system to settle down.

Donna, I am glad you have a check up appt today to get it looked at. I hope that it is healing well, but it is good to trust your instincts.

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

I'm way behind...I'll have to catch up later.

Carla, thanks for the email....I got it. :)

Are you still going to Germany? I noticed a few days ago that the bionic thread got deleted...bummer. Oh well, I can certainly understand and relate to her frusterations regarding negativity and such. Its alot of good info lost though. :(

Maybe you will start a new thread in October. :D

I left a note for the Dr. letting him know that I cant get in to see the voodoo lady (I found out her first name so she'll be Dr. T ;) ) till Oct. He called me back yesterday and said he'd talked to them and I'll probably be able to get in sooner...in Sept. YAY!

He told me to call them back on Friday and try to schedule for that. He doesnt want to have my follow up appt. until after I've seen her.

AndreaB Contributor
AndreaB
Posted

Rachel,

Yay for Dr P being able to pull some strings to get you in sooner with Dr T! :D Keep us posted.

Anyone have any good Vit C recommendations. I bought Alive from nature's way but it's too expensive to continue getting. I need to take 2 grams a day til I have the first removal and then up it to 3-5 grams. Since the removals are so close together I won't be backing back down on Vit C til mid-end of September.

CarlaB Enthusiast
CarlaB
Posted

Thanks, Julie. I stopped taking the stuff that produces the cytokines for me. My LLMD has me taking glutathione, NAC and ALA along with parsley for detox, so it should start helping soon. The fatigue is a lot better, but the pain is still there.

Rachel, I am still planning on going to Germany, but we haven't been able to get the doctor to respond to email or faxes. They told us on the phone to email or fax because they had trouble understanding us. So, we still don't have an appt. There are three of us going together.

I do plan on a thread, but will give the bulk of the info in the blog feature of LN, for obvious reasons.

There is another Bionic thread and a Lightworks thread. Both have a lot of good info.

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