Omg...i Might Be On To Something

[confused]

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

[dlp252]

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]

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

I can't wait.

[confusedks]

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. It just gets really basic...

[CarlaB]

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:

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

[Rpm999]

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

[confusedks]

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:

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

: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!

[Rachel--24]

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

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]

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 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

[miamia]

rachel

happy very belated bday

[mftnchn]

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]

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

Sherry

Interesting concept.

[aprilh]

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]

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 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

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.

[Rpm999]

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]

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]

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]

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]

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. 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]

35 days!!!! OMG!

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]

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

[confusedks]

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

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: It was SO funny! Little does he know...it's not THAT kind of pelvic ultrasound, LOL! :lol:

[CarlaB]

Kassandra, :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]

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]

Kassandra! :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.

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

Birdy