I'm back

Hello everyone.

I know there are probably many new ppl here to me but I see some old friends, as well; Girlie, Walking, DudeAbides.... I apologize to whomever I missed. Some of you reached out after I left and I greatly appreciate that.

I didn't take off for any negative reason, I actually started getting worse and when that happens I check out more then forget about things I've done for months or years prior (like my salt intake). It's really crappy.

I also around the same time hit a point of frustration where I felt out of options, so I gave in and tried DNRS thinking something different may be what i need. The central theme of that is really changing your thinking away from sickness so I decided to focus on something that would take all of my focus- I went back to school. I had no idea if I could pull it off or not but I wanted to try. I did ok at first so went for it and enrolled in the University of Arizona and became a Molecular Biologist! I'm staying here to hopefully complete a Master's (I'm 38 btw) because I want to see it through.

However, none of that helped and actually mauled me, lol. I chose Arizona because of the climate (mold) but anywhere I chose, the energy expenditure of class would have been too much. I was literally crawling to the finish line.

I also decided to leave behind Lyme for a bit and go harder after CIRS since everything kept coming back to toxins. I just got a GENIE test done from Dr Andrew Heyman and it confirmed CIRS and ruled out Lyme. I need some further testing but I'm starting Welchol and hoping this Arizona climate is the foundation I need to recover. Any mold people still around here?

Anyway, it's nice to post here again. I miss all the good people here and am anxious to see how you are all doing. I think I've taken up enough time so I'll leave it here and hope to talk soon

Aerose

Thanks, Girlie, nice to hear from you. How are you doing lately?

Aerose,

Glad to see you post again! Congratulations on your schooling. That’s very interesting about CIRS and the GENIE test. Do you mind sharing the cost of the GENIE test? When it first came out, it was over $2k.

If I remember correctly, that is a genomics test that identifies genes that are activated at the time of testing, as opposed to the 23 and Me type genetic tests that show genetic combinations you have but don’t identify whether they are actually switched on or not. Is that correct?

My mother took Welchol for a month. It gave her nosebleeds. If you suddenly get nosebleeds, it’s probably a side effect from the drug. Are you planning to do Cholestyramine after the Welchol?

WalkingbyFaith said...
Aerose,

Glad to see you post again! Congratulations on your schooling. That’s very interesting about CIRS and the GENIE test. Do you mind sharing the cost of the GENIE test? When it first came out, it was over $2k.

If I remember correctly, that is a genomics test that identifies genes that are activated at the time of testing, as opposed to the 23 and Me type genetic tests that show genetic combinations you have but don’t identify whether they are actually switched on or not. Is that correct?

My mother took Welchol for a month. It gave her nosebleeds. If you suddenly get nosebleeds, it’s probably a side effect from the drug. Are you planning to do Cholestyramine after the Welchol?

Hi Walking, great to hear from you.

You're exactly right about the GENIE test- it measures transcription factors of 150 or so genes so like you said, doesn't look at what genes you have, but rather which ones are turned on or off. The test is definitely geared toward mold and Lyme, which I guess makes sense since it comes from Dr Shoemakers wheelhouse.

Mine was $750 for the test and then the cost of having it drawn. Fortunately, the lab that drew it did all the treturn shipping so I didn't have to pay that as well. Still super expensive, though.

I now have to do a MARCoNS test and a small blood panel but once those are clear, my doc said I'm good to start VIP. So, fingers crossed.

I haven't had any side effe ts from the Welchol so far but I'll def look out. He didn't say anything about switching to Cholestyramine afterward- he said because I'm so damn sensitive to everything he wanted me on Welchol.

I wanted to ask you guys also about financing this without the ability to work after this long but I'll keep that for another time.

How are you doing? Any updates?

Girlie said...

Aerose91 said...

Girlie said...


I’m doing good - really good.
I am back to work and off treatment. I am in remission now. No more LLMD appts, no more abx.

Wow! That's fantastic! I'm so happy to hear this. How does it feel to be living life again?

////////////////////////////////////

It feels fantastic.
I do have a residual “symptom”
It’s around my scapula - left side. It was my very first symptom.
It’s tight and painful but it’s very minor. I would say it’s about 90% better?
And my short term memory - it’s better - but not like it used to be.

Hubby and I have been making plans now to do fun things.
We went to a concert in May and we have tickets for ColdPlay concert in September.

That's amazing, Girlie, I'm so happy for you! Do you think your short term memory will return? Has your doc said anything about that? That seems to be a weak point with all of us. It seems like you can live with the current setup just fine, though. Kind of you to still come here regularly, considering you're off living life again.

Aerose91 said...

Girlie said...

Aerose91 said...

Girlie said...


I’m doing good - really good.
I am back to work and off treatment. I am in remission now. No more LLMD appts, no more abx.

Wow! That's fantastic! I'm so happy to hear this. How does it feel to be living life again?

////////////////////////////////////

It feels fantastic.
I do have a residual “symptom”
It’s around my scapula - left side. It was my very first symptom.
It’s tight and painful but it’s very minor. I would say it’s about 90% better?
And my short term memory - it’s better - but not like it used to be.

Hubby and I have been making plans now to do fun things.
We went to a concert in May and we have tickets for ColdPlay concert in September.

//////////////////////////////
That's amazing, Girlie, I'm so happy for you! Do you think your short term memory will return? Has your doc said anything about that? That seems to be a weak point with all of us. It seems like you can live with the current setup just fine, though. Kind of you to still come here regularly, considering you're off living life again.

//////////////////////////////////////

I don’t know if my short term memory will get any better.
I don’t see my llmd anymore.
I live on the west coast of Canada - in the province British Columbia. I literally have to travel across the country to see Dr J. It’s about $5000.00 (flights x2, hotel for three nights, meals and in US $.
It’s hard to compare to what it used to be. I don’t know what is “normal”
I have all my appts on a calendar - dentist, doctor, etc.
When I wake up in the morning - before I get out of bed - I try to recall what I have on the calendar for the day.
Sometimes I recall… sometimes I don’t.

As long as it doesn’t get worse - I’m ok with it.

I am taking another round of valproate/loratadine/valacyclovir and herxing quite badly. I had a few different spots flare up, but most of the pain is in my arms and shoulders.

For some reason, borrelia really likes to get in that area. I guess because those muscles don't get used as much? And yes, it is more on the left side, since I am right handed.