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Omg...i Might Be On To Something

Rachel--24

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confused Community Regular
confused
Posted

Kassandra,

What do you eat for breakfast? Are you going to do an elisa test, that is what the hair test place wants me to do. They also want me to do an hormone blood panel. That way we will then have a full idea of what is going on.

paula

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dlp252 Apprentice
dlp252
Posted

Hello everyone...just saying hello. I've been reading along, but not much to add that hasn't already been said, lol! I'll probably have a lot to say on Friday (after my appointment tomorrow, lol).

AndreaB Contributor
AndreaB
Posted
I'll probably have a lot to say on Friday (after my appointment tomorrow, lol).

I can't wait.

confusedks Enthusiast
confusedks
Posted
Kassandra,

What do you eat for breakfast? Are you going to do an elisa test, that is what the hair test place wants me to do. They also want me to do an hormone blood panel. That way we will then have a full idea of what is going on.

paula

I am going to have an ELISA type test done. I should have it drawn tomorrow once I am a little more functional and can get out of bed. I am also going to have a hormone panel done mainly because I've had my period for 35ish days. <_<

For breakfast, I eat chicken and some fruit maybe. I need fat 2x/day for my Mepron. So yesterday my breakfast was almond butter and a banana. You can also do grapefruit so sometimes I eat one with just a little chicken. I don't think of breakfast as breakfast anymore.

I had rice cereal once for breakfast and that was pretty good. You could add agave and cinnamon and it would be like oatmeal.

I'm really not great at coming up with ideas. :lol: It just gets really basic...

CarlaB Enthusiast
CarlaB
Posted

Kassandra, I had to laugh just now when the news guy said there were a thousand lightening strikes in the past 15 min. in the area shown on radar .... that's way more lightening and thunder than you've seen/heard in your lifetime! :lol: :lol:

It's not raining here now, but it's coming .... I can hear it. :D

Rpm999 Contributor
Rpm999
Posted

rachel...i finally got that bloodwork back!

http://img67.imageshack.us/img67/9025/bchartrk7.png

^Main Chart

http://img75.imageshack.us/img75/1412/schartfc2.png

^Small Chart...no clue if it's relevant to anything but i put it just in case

http://img75.imageshack.us/img75/682/igacl0.png

http://img75.imageshack.us/img75/4386/iggor3.png

^IGG & IGA descriptions?....not important but put them just in case

hopefully that helps you out...if i was to guess, it wouldn't surprise me if i had a gluten intolerance because it feels like i have a lot going on, but then again, some of you who have gluten intolerance would know best, i'm just taking a random hopeful guess :lol:

confusedks Enthusiast
confusedks
Posted
Kassandra, I had to laugh just now when the news guy said there were a thousand lightening strikes in the past 15 min. in the area shown on radar .... that's way more lightening and thunder than you've seen/heard in your lifetime! :lol: :lol:

It's not raining here now, but it's coming .... I can hear it. :D

:lol: :lol: That is probably SO true! LOL!!!

I have a request for everyone...can you all pray/send positive thoughts that the insurance company approves my IV abx. I just talked to the lady at the infusion company and she said that as soon as she gets papers faxed from the Dr's office, the insurance company's case worker said it will be approved because I have neuro Lyme. Yahooo! I won't believe it until I see it, but it sounds good.

So we're just waiting for the Dr's notes to be faxed and then we will hopefully get the go ahead from the insurance company to start infusing! :D:P:)

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author
rachel...i finally got that bloodwork back!

hopefully that helps you out...if i was to guess, it wouldn't surprise me if i had a gluten intolerance because it feels like i have a lot going on, but then again, some of you who have gluten intolerance would know best, i'm just taking a random hopeful guess :lol:

OMG....who was it that told you the results were negative?

Are those your results on the first page (main)??

It shows the IgA is at 26....which would be positive. Anything under 20 is neg.

Then you're IgG is really high at 101.

If those are your numbers then they are both positive....there is an "H" right there next to the results...which indicates they are high.

It doesnt look like they ran a tTG. The EMA is not positive and I'm assuming based on that result they dismissed your positive IgA and IgG??

Anyways, you should have had more testing based on these results. You definately need to be gluten-free and its very possible you do have Celiac. I'm betting a gene test would confirm it.

Rpm999 Contributor
Rpm999
Posted

so you don't think it's possible that i have a gluten intolerance? i would have gotten more testing, but i didn't know anything then, and the doctor was a quack who never gave me my results and tried to hold them from me it seemed :unsure: i'm looking to get the gene test, but it's just strange since i have no real GI issues and so many neuro ones, i don't know

oh and they said the levels were low which...pretty much isn't :lol:

miamia Rookie
miamia
Posted

rachel

happy very belated bday

mftnchn Explorer
mftnchn
Posted

Hey everybody, I'm still here and still pretty symptomatic but energy and brain fog are a little better. Reading along but too much to post.

I just realized, my current severe flare occurred at EXACTLY the same time of year as the one last year that put me back on antibiotics. Now that seems like a big stretch! And there was no earthquake last year, LOL!

Anybody have thoughts about seasonal flares for lyme?

Could this be detox due to vitamin D levels improving in the late spring/early summer sunshine?

Sherry

CarlaB Enthusiast
CarlaB
Posted
Could this be detox due to vitamin D levels improving in the late spring/early summer sunshine?

Sherry

Interesting concept.

aprilh Apprentice
aprilh
Posted

I am going to have an ELISA type test done. I should have it drawn tomorrow once I am a little more functional and can get out of bed. I am also going to have a hormone panel done mainly because I've had my period for 35ish days. <_<

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
so you don't think it's possible that i have a gluten intolerance? i would have gotten more testing, but i didn't know anything then, and the doctor was a quack who never gave me my results and tried to hold them from me it seemed :unsure: i'm looking to get the gene test, but it's just strange since i have no real GI issues and so many neuro ones, i don't know

oh and they said the levels were low which...pretty much isn't :lol:

Its possible that you have gluten intolerance but I think there's a real strong possibility its Celiac. If the quack Dr. had known what he was doing he would have referred you to a GI for a biopsy. He also should have ordered the tTG with your bloodwork...and he didnt.

I think at this point you know you need to be gluten free either way because your IgA and IgG's were positive. I'd get the gene test to see if you have a celiac gene.

Its also possible that you have other stuff going on thats contributing to the neuro symptoms since they havent gotten much better on the diet.

Is it possible that you might have some small GI issues that you really arent noticing because the neuro symptoms are so bad? The first couple years that I was sick I didnt think I had GI issues....everything else was so bad that I just didnt really notice. Once the neuro symptoms got alot better I could tell that I also have GI issues....they're just not as severe as the other stuff that was going on.

rachel

happy very belated bday

awww thanks Mia. :wub:

Rpm999 Contributor
Rpm999
Posted

yeah i need to get the gene test soon hopefully...i have some little GI issues, but nothing really...no constipation, bad cramping, diarrhea, anything like that

mftnchn Explorer
mftnchn
Posted

With my realization of having two major lyme flares in late May, I am re-looking at the Marshall protocol. Some very interesting ah ha moments while reading there. A clear explanation for why I felt worse last winter, having a current flare now, and felt better through the latter summer and earlier fall last year.

Donna, I thought of you when I read this list: Open Original Shared Link because it specifically mentions great toe pain.

Sherry

mftnchn Explorer
mftnchn
Posted

Here's another site that is fascinating. The video is really excellent about Th1 disease and l-forms of bacteria. The science seems quite excellent and the stories interesting as well.

Open Original Shared Link

Sherry

CarlaB Enthusiast
CarlaB
Posted
With my realization of having two major lyme flares in late May, I am re-looking at the Marshall protocol. Some very interesting ah ha moments while reading there. A clear explanation for why I felt worse last winter, having a current flare now, and felt better through the latter summer and earlier fall last year.

Donna, I thought of you when I read this list: Open Original Shared Link because it specifically mentions great toe pain.

Sherry

Sherry, I remember someone in my family telling me about a friend who would have some kind of reaction every year the first time they were exposed to the sun. This person went to the doctor who told her that it was a sign of a vitamin D deficiency. They got the vitamin D they needed at the first exposure, it caused a reaction, then they never had that reaction the rest of the season.

I'm sorry I don't remember more details, but I would be tested for vitamin D before you start assuming it's too much vitamin D causing the problem. :)

dlp252 Apprentice
dlp252
Posted
I have a request for everyone...can you all pray/send positive thoughts that the insurance company approves my IV abx. I just talked to the lady at the infusion company and she said that as soon as she gets papers faxed from the Dr's office, the insurance company's case worker said it will be approved because I have neuro Lyme. Yahooo! I won't believe it until I see it, but it sounds good.

Done! :)

Donna, I thought of you when I read this list: Open Original Shared Link because it specifically mentions great toe pain.

Thanks for the links! Yeah, I remember a thread on LN about toe pain, and for the longest time I kept writing off the pain to that alone, and I still think some of the pain might be to that too. Also probably doesn't help that I've gained 15 pounds. :angry::lol: I'm not making any decisions on surgery until at least the end of June though because I see my GI again on the 24th specifically for a followup to the growth on my ampulla. Whether I do surgery on my toe or not will depend on the results of that appointment, lol.

confusedks Enthusiast
confusedks
Posted
35 days!!!! OMG! :blink::blink::huh:

:lol: It's nothing...I had it for 90 days once. Now THAT was fun! LOL! That was actually the beginning of the end of my health. Everything went haywire from that point on.

I'm headed to the place where I had my port placed and they're going to change the dressing and look at it to make sure everything is okay. I will also set up the appt. for the pelvic ultrasound.

Hopefully I will be able to get that done tomorrow and get the results in hand so I can talk to Dr H about them this weekend (assuming I get an appt...).

AndreaB Contributor
AndreaB
Posted

Keep us posted Kassandra. Hope you're able to get your appointment.

confusedks Enthusiast
confusedks
Posted

I had my food allergy blood test drawn today. I'm glad that's over...now onto the really strict sulfur free diet. <_<B)

I'm still waiting to hear back from Dr H's office about getting an appt. My uncle is "very concerned" that I am in bad shape. He said he hasn't seen me this bad in a long time. :( I don't know what to think, I just think it's been a really rough herx month this entire past month. This port surgery hasn't helped matters at all. I haven't felt this bad in quite a while. I wonder if it's the IV Vanco which they use for Lyme that's casing a herx.

I went to set up my ultrasound appt today (at the same place where I had the port done) and my uncle put his arm around me and said to the technician "we're hoping for a girl!" :lol: :lol: It was SO funny! Little does he know...it's not THAT kind of pelvic ultrasound, LOL! :lol: :lol:

CarlaB Enthusiast
CarlaB
Posted

Kassandra, :lol: :lol: :lol:

Sorry you are feeling so bad. Are you able to do any detox? I wouldn't be surprised if it was the IV Vanco, I've heard it's a very MEAN drug.

confused Community Regular
confused
Posted

Rachel,

Were you able to see your crush before he left to germany yesterday. I think it was yesterday that you said he was leaving lol.

Everyone,

Im doing good. I have been not stressing over my health the last day or 2. I did clean all the mold out of the boiler room today, I wore an mask but it still got me a little sick today. I felt like i was going to pass out at the tball practice.

Today is my anniversary and hubby has to work late. But he has the next two days off and we are going to go out and have some fun this weekend.

paula

ShadowSwallow Newbie
ShadowSwallow
Posted

Kassandra! :lol: :lol: :lol: I hope you feel better soon... maybe choose beforehand the IV abx you want if you have to get any more work done on that port? :)

Everyone,

Herxing time is here. And, sheesh, I forgot yet again how icky I can feel. :rolleyes::P:ph34r:

Does anyone know where Jin and Julie are? :unsure: I hope you two are doing well! :wub:

Birdy

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

      By trents · Posted

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

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • 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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