Omg...i Might Be On To Something

[jerseyangel]

Jin,

Before I was gluten-free, I used to get blister-looking breakouts on my fingers and sometimes on my chin that would be terribly itchy. I also had horribly itchy eczema on my left eyelid for probably 15 years that only went away completely after eliminating my problem foods. Before that, I had tried every prescription and OTC remedy known to man.

I also still get odd red bumps on my midsection that don't itch, but never go away completely.

Gluten definately has an effect on our skin--even if it's not the classic DH.

[CarlaB]

Laura, thank you for the information on Omnicef. They took me off it because of GI issues, but the GI issues didn't resolve. That's what the injections were supposed to replace.

My insurance usually requires the generic version. I can't remember which I bought, but my insurance is good for covering the medicines.

[Mtndog]

Thank you for the group HARUMPH! I needed that. I missed you guys this weekend.

[CarlaB]

Thank you for the group HARUMPH! I needed that. I missed you guys this weekend.

My computer's having a mind of its own ... I can finally give my HARUMPH!

[dlp252]

Harumphs all around for Bev!!!!

Yikes...so Monday night my kitchen sink back up...I try everything to get it unclogged, but nothing doing. So yesterday I had a plumber come out...he found all kinds of things down there (not from me, but I share the same pipes with 3 other units)...one of which was a gooey gel thing that he said was bacteria. Okay, YUCK!!! He said that was natural and that it happens in all drains, but usually not the gel thing. Figures, I, who am so sensitive to bacterial stuff has to have a bacterial ball in my drain. Gee, someone please tell me why am I sick again?! He said he found potatoe peels down there...I don't even eat potatoes, and the few times I have in the last few years, I eat them with the skin! Stupid condo pipes, lol.

Hello! Sorry I've been MIA (long story long weekend) but I've done some catching up reading on everyone. My blood draw is tomorrow. I got my "diagnosis" list and one of the diagnoses was GIDDINESS (apparently it's a medical term for dizziness).

Giddiness OMGosh...for all I know that may be written in my file but I'm pretty sure my old doctor used a completely different word to describe me. I've had dizziness for a couple of years and couldn't hardly get a doctor to look at me much less give it a name. Big HARUMPH!!!!

Very nice picture!

Hm.....let me see......I vote for lyme and mercury.

...

I went shopping two days before payday

Yep, or mold. The itching didn't really get better when I went on the anti candida diet, but there was a period of a couple of years when the legs didn't itch...but then the heel did. I don't know...I think it's all in my head.

I've done that before with the shopping...be careful though...more and more places are going to the electronic check clearing thing.

[AndreaB]

he found all kinds of things down there (not from me, but I share the same pipes with 3 other units)...one of which was a gooey gel thing that he said was bacteria. Okay, YUCK!!! He said that was natural and that it happens in all drains, but usually not the gel thing. Figures, I, who am so sensitive to bacterial stuff has to have a bacterial ball in my drain. Gee, someone please tell me why am I sick again?! He said he found potatoe peels down there...I don't even eat potatoes, and the few times I have in the last few years, I eat them with the skin! Stupid condo pipes, lol.

Eeeewwwwww!!!! Said neighbors that share the same pipes should help pay for the plumber expense. That's outrageous.

I don't know...I think it's all in my head.

I've done that before with the shopping...be careful though...more and more places are going to the electronic check clearing thing.

I usually don't go 2 days before but have 1 day before many times. I know Wild Oats takes 2 days to clear so I should be okay there.

Bev,

Don't know what time your appointment was/is today but I'm hoping for an update on how it went.

[happygirl]

I just talked to my lab in AL, where I had my Celiac biopsy taken (2004). They still have it! Their policy is to keep the paraffin blocks TEN YEARS.

So ladies, if you had biopsies, its worth calling to see if they are still around.

My set from this fall were sent to MDL yesterday. My set from 2004 will be sent to my doctor, and then out to MDL, hopefully by late next week.

Happydance

[Mtndog]

I just talked to my lab in AL, where I had my Celiac biopsy taken (2004). They still have it! Their policy is to keep the paraffin blocks TEN YEARS.

So ladies, if you had biopsies, its worth calling to see if they are still around.

My set from this fall were sent to MDL yesterday. My set from 2004 will be sent to my doctor, and then out to MDL, hopefully by late next week.

Happydance

Hi y'all- Just returned from picking up my student's final papers and having my blood drawn. Don't really know anything as of yet as they just drew for the Igenix Lyme and the celiac disease 57. The nurse who draws the blood said I can call next Wed when she is in about the celiac disease 57. She also said I can call on any Wed. when she is in to see about the Igenix results. Only she and the doc can discuss them with you. She's a hoot!

So here's the deal on the tissue sample (for Igenix anyway). The sample must be in a sterile urine container and either frozen or in formulin (don't know what that is but I'm guessing a formaldehyde substance). It has to be cold packed and Fedexed to Igenix (over night I believe). It costs $255. But at this point in the game- WHATEVER- take my money, my blood, my tissue! Ewww...sounds so gross.

I havea question- what exactly does herxing feel like for you guys? I am on the Theralac and they said that sometimes even just that can be enough to kill off the baddies and make you herx.

All I know is that if my daily hideous feeling were rated a strong 6, this is about a 9.5. Feel like I'm a gonna die! Head hurts- emptied 99% of my tender bum into toilet.

Can we have a herx share?

[jerseyangel]

E-w-w-w Donna--a bacterial ball in your drain???? Sounds disgusting--Andrea's right--the other neighbors who share the pipes should chip in. After all, it was their potato peels and bacteria

Oh Bev--that sounds terrible Hang on just a little longer--I just know that you're going to get some new insights soon as your new tests are in. Stupid headache I wish it would go away and leave you alone.

[dlp252]

Can we have a herx share?

Aw Bev, sorry you're not feeling well. Don't know if I can herx share...I was actually going to ask a similar question....and a follow up question is how can you tell if it's a herx or a reaction to the meds/supplement cuz all my symptoms always seem the same...I have the same reactions.

Anyway, the only time I KNEW I herxed was when I first went on the anti-candida diet a few years ago. I definitely felt it. My body felt like lead, I ached--almost like the flu all over my body, my eyes hurt in their sockets and I was headachey. That last for two weeks, then I amazingly had energy to fuel a small city. Amazing really, compared to now, lol.

[Mtndog]

Stupid headache I wish it would go away and leave you alone.

It cracks me up how much we are all starting to sound like SusieQ! With the HARUMPHS and the Stupid and the "Hold Me I'm scared"....I want to add a new one.

We'll call it DingoGirl Lingo. Here's mine "Massage me, I ache!"

Patti- I'm sorry you are glutaminated!!!!!!!!!!!!!!! Stupid gluten

[dlp252]

We'll call it DingoGirl Lingo. Here's mine "Massage me, I ache!"

Patti- I'm sorry you are glutaminated!!!!!!!!!!!!!!! Stupid gluten

Or for short, DingoLingo!

you said glutaminated!

[CarlaB]

Can we have a herx share?

My LLMD asks how I'm doing based on percentages ... 0 being dead and 100 being perfect for my age.

Jan. 20th at my first appt. I told him I was 15%. When I first started on the meds, I felt about 20% and the same during herxes ... I couldn't really tell what was a herx and what wasn't.

Now I'm about 60% between herxes. I was hoping that maybe I had an early herx this month when I felt bad over the weekend, but that was just a normal downtime. My herx is starting today.

I felt okay when I got up. I left late morning with Adam to go to the mall to return shoes then to take his car to the shop. I have good posture and always stand up straight, but as we were walking into the mall Adam told me to quit slouching. It's funny because I never slouch, but get on everyone else for doing it! It's that my back muscles get weak. Sometimes they almost hurt, but I don't generally get pain ... I think that's due to the weightlifting.

As we were walking around the mall I could feel the herx was starting. For me, the feeling is fatigue and weakness. There are sofas in the mall, and I seriously could have lied down on one and gone to sleep and not cared that everyone was watching me!

He wanted to look in another store, but there was no way I could walk to the store and look around. I was getting weak. When I waited for him to drop off his car, I closed my eyes. All I could think about was getting home and lying down.

I'm slightly disoriented. I'm not social (my son thought I was mad at him because I wasn't talking). I also can't handle a lot of action happening near me, I get overwhelmed ... even my daughter sitting next to me trying to do her math was too much. I also have an upset stomach and diarrhea. Vertigo is bad, too ... feels kind of like I drank too much yesterday.

The good thing is that I know that in a couple days I will feel better than I did when this started! Right now I'm about 25% ... so I'm better than I used to be when I wasn't herxing. We are eating out tonight because I can't cook ... I will go out with them ... it used to be during a herx that I couldn't ... it could get to be like that tomorrow, we'll see.

[AndreaB]

Happydance

That's great Laura! You're looking to see if you've had this since 2004 of before? I'll be looking forward to the updates on these.

The nurse who draws the blood said I can call next Wed when she is in about the c d 57. She also said I can call on any Wed. when she is in to see about the Igenix results. Only she and the doc can discuss them with you. She's a hoot!

Ok, I'll be waiting until next wednesday to hear about your results for the C D 57. I assume a week or two after that for the WB's.

I'm sorry you're feeling crummy.

I don't have herxes so can't participate in the herx share.

The good thing is that I know that in a couple days I will feel better than I did when this started! Right now I'm about 25% ... so I'm better than I used to be when I wasn't herxing.

Yay for progress! Sorry you're thing this weekend wasn't a herx. It does sound like they are getting better since you feel better.

[jerseyangel]

I don't have herxes so can't participate in the herx share.

Me either--but this gluten incident is hanging in there pretty good....

Feels like I got kicked in the stomach

[Mtndog]

Me either--but this gluten incident is hanging in there pretty good....

Feels like I got kicked in the stomach

Aww sweet Patti- yuck a dukey- GLUTAMINATION stinks!

Carla- Yep- if someone had let me lay down exactly where I was and slept- I would have. Problem was i was driving and had to "coach myself home" Passed out HARD for two hours and feeling a little bit bettter now. My first herx? It was a much different feeling than I've ever had before.

[CarlaB]

Maybe it was a herx ... it is different, that's for sure. Fatigue doesn't begin to describe it ... this is from Lymeinfo.net

Fatigue is a common symptom experienced by Lyme disease patients, and it can be prolonged and very debilitating. This fatigue can be accompanied by either excessive sleeping or insomnia. Some patients may experience the fatigue intermittently or after exertion, while others may be bedridden. Lyme disease fatigue is NOT the same as simply being tired from overwork or stress. Much like Chronic Fatigue Syndrome, Lyme often causes a profound exhaustion that is significantly worse than what is seen in other illnesses.

[Rachel--24]

Just a quick drive by...I only skimmed posts...will be back later.

Laura....awesome news!!! I hope this means mine are still available too!!

Ok...I got put on Transfer Factor tonight. Who else is on TF??

This is a totally different TF from what Dr. Rick had me on last year. Anna put me on this stuff....

Open Original Shared Link

So as usual I'm totally freaked out about it and have all this anxiety about taking something new. It has Beta Glucan...from Brewers yeast!!!

So the yeast has me all worried...I talked to Anna about it and she said its not alot of yeast....not like eating a cube of brewers yeast or anything like that. She said the TF is gonna be good for me but I'm still kind of paranoid.

I'll report more about my appt. later.

She said if everythings going well I dont need to come back for 3 weeks...so I wont be going to BioSET every week anymore. If I'm not doing well...I can come in and they can check things out.

[AndreaB]

She said if everythings going well I dont need to come back for 3 weeks...so I wont be going to BioSET every week anymore. If I'm not doing well...I can come in and they can check things out.

So does this mean you've graduated?

I assume you'll know if your pathways get blocked again?

[Rachel--24]

My understanding of a Herx is that if its a "true" Herx you will be left feeling better than you felt prior to the Herx.

I would imagine this wouldnt really be the case if you cant excrete toxins though....if you kill stuff and your elimination paths are blocked...you probably wont feel better afterwards.

If you continue to feel worse for an extended period of time then it might not be a Herx reaction...instead it could be mobilization of toxins which arent being excreted or an allergic reaction.

A bad reaction can sometimes be just that....a bad reaction. Sometimes our bodies just dont tolerate a certain supplement or medication and this can be mistaken for a Herx.

I herx from taking Nystatin. The herx is short lived as long as I take activated charcoal to absorb the toxins. I always end up feeling better afterwards. Some other things I've taken dont have this same type of response....they just make me feel bad ALL the time. Those are not usually Herxes.

A herx means stuff is being killed off faster than your body can handle....so what you're actually feeling is the toxins circulating and getting redistributed...basically if the elimination organs werent overwhelmed...the toxins would be excreted and you wouldnt feel a thing.

For this reason I dont think Herxes are desireable...at least not for me. Thats why I take the charcoal....it absorbs the toxins so that they arent just circulating throughout my body.

[CarlaB]

True, I do feel better after a true herx. Last weekend was just an aggravation of symptoms, but a real herx brings a slight improvement. Sometimes the improvement isn't very noticeable or is slow.

I don't think herxes can be helped when on abx. Some LLMD's will have you take a little break from the meds during a herx, others don't.

I think they become a problem if you don't recover from them ...if your body catches up quickly and you feel better, I don't think it's a bad thing.

I think they can be dangerous for some people, especially if they can't detox. Detoxing is the key to getting better ... of course, that's why the Bioset is working on clearing pathways.

I was taking charcoal, but my doctor told me to stop taking it so it didn't interfere with the meds. It all depends on the protocol. He did just prescribe something to help with intestinal toxins, but I haven't picked it up yet so I can't tell you what it is.

My LLMD agrees that anything that makes you feel bad all the time is the wrong thing to be taking.

I actually LIKE a real herx because I know that afterward I will feel somewhat better.

[NoGluGirl]

Dear Bev,

Aw! We missed you too! You are welcome for the HARUMPHS. We all need them sometime. Mine was Friday, when I was glutaminated by supposedly safe candy. I am still trying to completely rocover. It sucks about how you have felt so rough. Hopefully, you will feel better soon.

Dear Donna,

Ew! That bacteria ball sounds disgusting! Ick! How nasty! That is scary! I am not sure I would want to share a condo now. I do not like the idea of being around people who I share plumbing with. I think the DingoLingo is great! That is our language at Rachelville!

Dear Carla,

You know the fatigue Lyme causes? That sounds like me. If I overdo my activity level, many times I am sick later that day. I will ache all over, and I get queasy as well. I also have really eratic sleep patterns. Sometimes I cannot sleep for more than a couple of hours. Other days, I get 10 or 12 hours in segments.

I am sure your herx will be over soon. Then you can feel better! That would be nice! You might actually feel like doing something fun! I get so tired, if I go out for a couple hours, much of the time, I get worn out for the day.

Dear Patti,

All I know is those bumps itch and burn. It still could be acne. I am not sure how they test for DH. I heard there are tests. Right now, I cannot even afford the cheapest tests. My father says he has no idea how we could afford this. However, there is a new statewide program for uninsured Hoosiers. I am going to check into it.

It is such a bummer about your glutening. It just totally sucks. Last week, I had what I call a Please Kill Me Day. I hope not to have one of those again! Hopefully, we will both recover soon!

Dear Laura,

It is so great they kept your sample! I have no idea if they keep samples up at IU Med. I doubt it. I know my intestines looked clean. That does not mean much, though if the damage is microscopic. Who knows? I do not think those morons up there knew what they were looking for!

Dear Everybody,

If you want to see what I sell, go to www.kimskraftsgiftsandmore.com to check it out. Warning: there are a lot of items. The SMC stuff is loaded. I do not know if the bath and body stuff contains gluten or not. I need to find that out. I do not know if it is possible, though. Many of the wicks in my candles are lead-free.

Sincerely,

NoGluGirl

[Rachel--24]

Anyway, the only time I KNEW I herxed was when I first went on the anti-candida diet a few years ago. I definitely felt it. My body felt like lead, I ached--almost like the flu all over my body, my eyes hurt in their sockets and I was headachey. That last for two weeks, then I amazingly had energy to fuel a small city. Amazing really, compared to now, lol.

Yup...this totally describes my first week totally off gluten, processed food, sodas, juice, cigarettes, etc. I actually thought I was dying though. Everything I ate I reacted to 1000 x worse than normal...also chemical sensitivities were through the roof. The chemical thing was totally unreal...I was reacting to chemicals in EVERYTHING.

After about 1-2 weeks of the worst pain I suddenly felt better than I had felt in more than 2 years....and my head was clear...and depression was gone!!

[rinne]

I wonder if I should put some kind of "update" on my original post in this thread. I always feel bad when people take time to type out responses to my first post.

I wonder if that would be helpful as many people dont realize how old that post is or how long the thread is.

Yup.

Not to worry Cara! We move fast here anyway, so even last year there were already several pages in just a few short days. Feel free to join in, lol.

Mold!

Welcome Cara.

I may not be as crazy as I thought. I was thinking about how much the sunshine seemed to have helped me in the past with Lyme symptoms, before I knew it was Lyme. Just fresh air, sunshine daily, exercise, and eating right put this into remission twice.

Here's an article I found. Open Original Shared Link

Sunshine definitely helps me.

If you think about it, they use lights for jaundiced babies! When my son was born in Florida, and Morgan in CA, they both got a little jaundiced. The doctors told me to put the babies in the direct sunlight naked for a certain time each day to stimulate LIVER function!! Of course, with the babies, it was early morning and late afternoon.

That is very interesting.

I have got that burning skin sensation really bad today. I had it nearly every day for two months, then last week it was barely noticable but today, I just want to crawl out of my skin.

I've had that too, with a tingling feeling.

My stupid burnt arms caused quite a bit of commotion in the nurses station.

I think everyone there said "OMG" ....I guess it must be noticeable.

I only got burnt on my arms and I wore long sleeves all day cuz of working in dairy and all. My arms didnt bother me at all until I got in my car for lunch and the heat just really caused my arms to BURN. Getting in my hot car wasnt too much different from getting into a hot bath with a sunburn. OUCH!!

I hope this is all better now.

[rinne]

"Rachel Style"....does that mean super long post...with no less than 30 small paragraphs??

Yup.

Hi everyone,

Too foggy to do quotes, but I finally finished reading everything.

I'm managing a few quotes but have little to say, I've been in business seminar the past two days, bad lights and over air-conditioned, way too much talk about taxes, I'm worn out, also nowhere to eat and all I've managed to take is almonds and a can of salmon.

I hope you feel better real soon Patti.

I can't blame you. Let us know what your doctor says.

Bev posted on D/S that her appointment is tomorrow for the blood draw and that her endoscopy is

Friday. She's been swamped with company so I hope we see her over here after things calm down.

Thanks Andrea, I'd been wondering about Bev.

"Doopy", another new Rachelville word!

Yes.

Happydance

That's great.

Hi y'all- Just returned from picking up my student's final papers and having my blood drawn. Don't really know anything as of yet as they just drew for the Igenix Lyme and the celiac disease 57. The nurse who draws the blood said I can call next Wed when she is in about the celiac disease 57. She also said I can call on any Wed. when she is in to see about the Igenix results. Only she and the doc can discuss them with you. She's a hoot!

........

Can we have a herx share?

Glad to know the testing is in process. I'll try and remember to write about my herxing when I have some energy.

Night night.