Omg...i Might Be On To Something

[AndreaB]

Robbin is a really sweet person....she deserves to be healthy too.

I agree. She's always posting things on D/S to try and get people to see the good, the positive.

[Rachel--24]

I think its good that you are having the blood drawn, etc....because even IF this isn't it (which, we all know its not "celiac" that is causing your other problems at this point, since you are gluten-free), then you have proof that its not that. Sometimes, that is equally important. Rule it out and move on. I posted the same thing for Bev, about the endo and checking for malignancies. I think its good! (I like to tell people...well, here's what I DONT have....!!!)

Exactly Laura....I couldnt agree more.

I know for myself...I feel 100% confident that the diagnoses I have now are the right ones. I would never have had that confidence had I not had everything else ruled out.

I never turned down a test...I took anything and everything that was suggested and I also told my Dr. everything I wanted to be tested for...including Celiac. My new Dr.'s loved it when I was able to present all this labwork and test reults showing whats been ruled out.

Its a big help to them and there are no worries that somethings being missed. I think its important to get all these tests done....I've never once questioned my diagnosis because of lack of testing for other diseases. I'll never have to wonder what might have been overlooked.

Its reassuring to say the least....and yes...you have that proof to say these things have been looked into....and RULED OUT.

I dont regret a single test I've taken....even the ones which I felt were extremely unlikely.....like the AIDS test my GI had me take. I'm glad I know I dont have these things.

Laura...I'm sorry you had a rough day and werent able to stay at work. I understand how you feel. Relax...get some rest...hopefully tomorrow will be better.

Its so strange how one day can be great and the next day has you hating life ....its so up and down...I dont get that part of all this.

It happens to me alot....even though I'm not having too many REALLY bad days....I still have days where I'm just not feeling nearly as good as I was feeling 24 hours earlier...or even 1 hour earlier...or heck even 5 minutes ago!!

Things just change on me really quick.

[Rachel--24]

I started the salt/c sometime in August I think, I have a record book somewhere but that would mean remembering where I put it. It was a friend who had emailed me the information about salt and when I looked at the symptoms for Lyme saw myself and everyone else I refer to as the "Lyme Clan".

Yup...I knew it....it was shortly before I got tested that you were talking about Salt/C.....I remember you sending me the Klinghardt protocol. I didnt know too much about him back then.

I was all gung ho about going to see this Dr. to find out if I was mercury toxic...once and for all!!! Instead I ended up having the Igenix test. .....and I still havent had that freakin mercury test!!

Lyme Clan

I love that.

[Rachel--24]

I think that people tend to minimize our illness if we are seeing alternative health care providers, perhaps it is still the attitude that if it were REALLY serious we'd see real doctors.

I think you're right. This is exactly what I would have thought when I was healthy and ignorant.

I know I would have thought this alternative stuff was WAY out there...I mean c'mon...BioSET....ART....lying in a dark room holding a glass on my stomach??? What the heck is that all about??

I think when people are minimizing the illness and the treatment itself....its because they dont know anything about it....its totally foreign to them. Like...how could a person really not be able to eat bread?? They cant even grasp that...let alone the fact that some of us cant eat anything.....or we react to chemicals....burst into tears (or rages) at the drop of a dime, etc.

Like my own brother says..."Yeah...I find it hard to believe that you cant just come over here and eat barbeque like everyone else...I mean...whats wrong with BBQ'd meat....I find it hard to believe you cant eat anything."

And yeah....if all this stuff were really *real*.....a regular Dr. would surely say so...right???

My Dr. is actually an M.D.....hes got like 25 years in internal medicine...worked at a hospital...studied chronic disease, etc. He now has an integrative clinic and this is the Dr. who thought of Lyme almost immediately upon hearing my symptoms....he's the one who also recommended I go to BioSET.

He said he didnt used to have anything to do with those types of alternative testing...obviously he changed his mind at some point....obviously he got smart.

I think a GOOD Dr.....who truelly has concern for the patients well being....is a Dr. who is "open minded" and does NOT dismiss things which could be beneficial for the patient. The mainstream Dr.'s I saw were all very defensive and obviously not very happy with patients who are pro-active and definately not into hearing anything about diet, supplements, or anything "alternative".

The integrative or alternative Dr.'s I've seen are quite the opposite.....they love a patient who is proactive and determined. They are open to different things and they dont sit there and get all huffy about Western Medicine. This has been my experience...although I'm sure there are some bad ones out there too. All I know is that the Dr.'s I see now are confident....but not arrogant...which is what my previous (and ignorant) Dr.'s were.

[Rachel--24]

Patti and Bev....YAY for two good appts.

Bev...totally know how you feel....I'm envious that you got to have an endoscopy today.

I'm glad the Dr.'s are looking into various things and ruling stuff out. Patti...I'm glad you were happy with the Dr. and that he knew his stuff re. Celiac.

Bev....YAY for villi standing tall and proud.

Guess we will have to wait for the biopsy results to know for sure but I'm still rooting for your villi!!

[NoGluGirl]

Dear Lyme Clan,

I have some exciting news to report! The June issue of Ladies' Home Journal has an article about Lyme Disease in it! It talks about how difficult it is to diagnose, and even briefly mentioned Babs! That is really something! I told my dad to read it.

In other news, my mother loved the gift I picked out for her birthday yesturday! Dad picked it up on his way home from work. I got her an emerald and diamond gold heart pendant. She is getting the matching earrings for Mother's Day. I am so glad I finally got something I knew she would love! Kohl's had them on sale for Mother's Day, and Dad's check luckily came in early today. Normally, it would not have gotten here until the 15th.

Also, now I can go grocery shopping! Yay!

I can get some Hormel Pepperoni, Kraft Cheese, Yeast free, Gluten free bread, and Classico sauce and actually have something like pizza! I am going to get stuff to make homemade Spring Rolls and stuff too! Rangoon would be great!

Sincerely,

NoGluGirl

[miamia]

Patti-

I am so happy to hear you had a good appt!!! They are so rare unfortunatly

Bev-

I completly know how you feel - I hate to say it but i love "going under" It is the most euphoric feeling

Rinne-

I am like you I am ok about the yeast diet except for the stuff I make ( bagels, pizza dough, etc

)

Laura-

sweetheart I am so sorry to hear you are had such a rough day- I am going to try to send you a PM later you are in my thoughts though and I am hoping today will be better for you

Rachel-

I love to hear how satisfied you are with your present treatment- it is so great for you that after all you have been through you are in a place where you finally feel like you are in good hands and headed in such a positive direction.

HI to everyone else.

I have not been posting as much but I have been following I ahve to post an update ok here goes-

I am taking estrogen right now well actually on an estrogen patch for right now which I will do for one month do get my body used to it and than go to an oral one for one month- this is for a few reasons mainly to stimulate the hormone ghrelin (this is basically in the least scientific description possible to stimualte appetite ) I am on the 3rd wek of the patch and knock on wood seem to be handling it) unfortuanatly as we all know hormones can cause candida to rear its ugly head and that is the case right now- I knew I would not get by unscathed!! So satrting monday I am going on diflucan for ashort period- I cannot handle nistatin for some reason, but did better with the diflucan in comparison.

I am still going to the chiropractor 1- 2 times a week and feel like it is helping a bit to ease some of the discomfort that stems from my front but radiates to my back and has created alot of misalignment and tension especially on my left side. This week I ahve an appt on thursday with a women who does for Craniosacral Therapy and visceral minipulation. It is supposedly very effective I figure I ahv tried everything else why not give it a shot. Ok I think that is all for now Im sure there is more but my brain has just stopped .

Miamia

[dlp252]

Rachel - you'll have to tell about the Ex, lol. I think it looked cute from what I saw of the previews.

Jin - yay for a good day, lol.

Mia - wow, I hadn't heard about hormones for appetite...I guess THAT part of my hormones works really well then, lol. I'm glad you are handling them...have they helped yet?

[jerseyangel]

Good morning everyone

Jin,

I had gluten-free pizza last night, too! Hope yours was good. I, like an idiot, forgot the xanthan gum--it tasted so good, but was somewhat tough. I was so mad at myself--that's how my mind gets when glutened--I get stupid

I have a recipe for pizza crust that uses corn and potato starch. It calls for yeast, but it can be omitted because it's only there for taste. Let me know if you want it. It's pretty good, and is very quick to mix up.

Hi Donna

Miamia,

It was nice to catch up with you! Interesting about the estrogen boosting your appetite. Hope it works for you with a minimum of side effects. I hate how we always seem to have to trade one thing for another.

Best of luck with your appt on Thursday! That sounds very promising

~~~~~~~~~~

My brain is still mush from Monday If I didn't proof read my posts a couple times, you'd all think I was illiterate!!! Jeesh

[miamia]

ok I just had to quickly say I had pizza last night too- what an odd coincedence. I am so impressed I have actually been relativly ok with it

I never use xanthium gum in anything - that stuff messes with me!!

[jerseyangel]

Sounds like we all had "pizza night" last night!

I react to xanthan gum sometimes--and sometimes not (so what's new--right )

Anyway, I ordered the xanthan from The Gluten Free Pantry, since I can tolerate their mixes (except the ones with tapioca). Lo and behold, their xanthan has not caused a problem for me. I've used it several times. I don't use it often--really just for banana bread and the pizza crust--when I remember

Bob's Red Mill, on the other hand, made me react every time.

[dlp252]

I had pizza only in my heart...is that pizza lust???? :lol:

Hi Patti!

[rinne]

I still wish Robbin would try to get the funds together for Igenex testing.

Does anyone else think lyme could be behind her illnesses?

I think Lyme is behind a great deal of illness and quite possibly Robbin's. I've been thinking about her alot lately and even stopped by DS for a moment. I miss her, she is so kind and funny too.

I hate life today. Came home from work early. i hate this

Happy girl, I hope today is a happier day. We all know that dark place, so sad when it takes our joy away.

Hi Everyone- I KNOW I posted when I got home this morning- it started with HIGH there (pun intended) butit seems to have mysteriously disappeared

Bev, so glad about the good news.

Rachel, I can't believe you're eating yams again

Hi everyone--just got through all of the posts--whew!

Had my appt with the new GI today--I liked him. ....

Yams, eek. Rachel I have been trying to avoid them just cause of the sugars, how are you doing?

Patti, glad you liked your new doctor and no kidding about the posts lately.

Dear Rinne,

I did not design the Web site myself. That was done by the company that defrauded me. They were supposed to advertise and promote my site as well as keep it updated. It is obvious they have not done so. Since the middle of December, they have had the same things on there. We have gotten a lot of new items in. Digiworld Technologies lied about being affiliated with my supplier. It turns out, my supplier had sued them about a year and a half ago.

Ouch, I'm sorry to hear that.

That would be great if it caused them excruciating joint pain, headaches, nausea and brain fog

I think so....but it doesnt really matter what anyone else thinks....she might not be wanting to know if it is or isnt. Kind of like what Bev went through. Whether its Lyme or not I do hope she gets to the bottom of things.....Robbin is a really sweet person....she deserves to be healthy too.

I think we all go through stages with acceptance and denial, especially since the public face of Lyme, remember the documentary with the dreadful stories of paralysis, is so very terrifying. I truly feel that I am getting well because I have not taken a conventional route of treatment.

I think it has become obvious that for each person there is a unique path to wellness, each of us is finding our way through our illness and learning that trusting our body is a foundation we can build on.

I am really grateful that we met before we knew it was Lyme, I feel we are much more interested in each other's wellness and not the correctness of our treatment plan. Some of the Lyme sites seem pretty segregated.

Yup...I knew it....it was shortly before I got tested that you were talking about Salt/C.....I remember you sending me the Klinghardt protocol. I didnt know too much about him back then.

I was all gung ho about going to see this Dr. to find out if I was mercury toxic...once and for all!!! Instead I ended up having the Igenix test. .....and I still havent had that freakin mercury test!!

Lyme Clan

I love that.

I know I've said this before but for anyone new, there are an incredible number of writers with Lyme Disease. They even had their own convention, I'm told. Amy Tan, Joy Luck Club, and Roberta Wells, The Ya-Ya Sisterhood. for sure.

In other news, my mother loved the gift I picked out for her birthday yesturday! Dad picked it up on his way home from work. I got her an emerald and diamond gold heart pendant. She is getting the matching earrings for Mother's Day. I am so glad I finally got something I knew she would love! Kohl's had them on sale for Mother's Day, and Dad's check luckily came in early today. Normally, it would not have gotten here until the 15th.

Also, now I can go grocery shopping! Yay!

I can get some Hormel Pepperoni, Kraft Cheese, Yeast free, Gluten free bread, and Classico sauce and actually have something like pizza! I am going to get stuff to make homemade Spring Rolls and stuff too! Rangoon would be great!

How sweet, it is such a wonderful feeling to make someone else happy.

And how great, fun with food. What is Rangoon?

This week I ahve an appt on thursday with a women who does for Craniosacral Therapy and visceral minipulation. It is supposedly very effective I figure I ahv tried everything else why not give it a shot. Ok I think that is all for now Im sure there is more but my brain has just stopped .

I've had the Cranial Sacral, just once, and really liked it, I hope it goes well for you. I am so glad that you are finding help.

[Mtndog]

I had pizza only in my heart...is that pizza lust???? :lol:

Hi Patti!

I have pizza every night in my heart! OMG- maybe it's a rare but serious disorder called Pizza lust that I have!!!!!!!!!!!!!

Miamia- Hi! It's always nice to "see" your face (it's that picture- you look so elegant!). So interesting that they are using estrogen to stimulate your appetite as I have unbelievably high estrogen and no appetite. Maybe it's a different type of estrogen. Keep us posted on how it goes!

NoGluGirl (Jin- right?)- I checked out your website. SOOOOO cool! I want the Open Original Shared Link so cute!!!!!!!!!!!!!!!!!!!!! So how do you run it? How do you find the items? do you make stuff for it too. I can't wait to browse through it more!

Hi patti!

Hi Donna!

Hi everyone!

Patti- Hope the glutamination is wrapping up and laura- I hope you're feeling better!

I bought some funy antique planters so I am going to work in the garden today (with socks, long pants and long sleeves- fear of ticks (we need a tick emoticon for this thread =*= is the best I can do.

We need a mercury one too

[Clark Bent as Stupor-Man]

alright, a few more general questions regarding lyme... I'll probably follow up on some of this with my LLMD if I get a chance but it's always good to see what others are doing as well:

1.) It's fine to take an antifungal at the same time as taking antibiotics for lyme, right? I'd be surprised if it wasn't, just want to make sure... I'm considering taking a small amount of caprylic acid again as I think the candida is affecting me moreso recently.. and on top of that, I'm gonna be starting antibiotics within a week so it would probably be proactive to take an antifungal along with the probiotics I'm currently taking

2.) For those taking antibiotics, how much probiotics do you take and have you found certain brands you like? I currently take Klaire probiotics once a day and might up the amount while I'm taking antibiotics

3.) Rachel and Donna (and anyone else for that matter), did you get your CD57 results yet?

if I'm not mistaken, those taking antibiotics for lyme are mia, laura, and carla and then rinne and rachel also have lyme but aren't taking antibiotics, right?

[Clark Bent as Stupor-Man]

Welcome back Charlie. I was wondering where you were. I think you did tell us you were moving though didn't you?

I think I might have mentioned it at one point... still trying to get everything set up and I'm trying to get as much done as I can before I start antibiotics next week...

I do not know the answer to Charlie's question. I know that Adam does not show the slightest symptom and that I had Lyme before we met. Maybe he has it and his immune system is strong. I'm not worried about him getting it from me because if he were going to, he'd already have it. I am worried about getting better and getting it back from HIM. I'm going to talk with my LLMD about that.

the thought of that never crossed my mind... interesting from a scientific standpoint if lyme can be transferred through sex..

Charlie, will your doctor only give you 1 month? That definately will not be enough! I hope that's not what you are saying.

no, I didn't mean to imply that... I was just saying that I didn't expect one month of them to do the trick, meaning I'll be on them for a while, which I'm not really looking forward to... I know now that I have lyme, though I'm somewhat in denial as well at the moment, that I should start taking antibiotics ASAP but I haven't been on meds in over a year and haven't had good experiences with taking long-term meds in the recent past though it was completely different meds... I'm also hesitant in terms of how I will feel on the meds, what I'll be able to do, herxing, etc... but I'm slowly coming around on it and I think I'll be ready to start them next week...

I actually immediately went from feeling 15% to 20-25% upon starting meds. Some people feel worse when they start them. Herxes are bad, but if you have to work, then talk to your LLMD about letting up a bit on the meds during a herx. I keep taking them and focus on detoxing what's making me feel bad.

that's good to hear about getting somewhat better right after starting meds... at least I know that could be the case even if it doesn't end up being the case for me...

fmla protects your job for 3 months for the above mentioned reasons. they aren't required to pay you, but are required to let you take that time off, either all at once, or over the course of the year. you can use unpaid or banked vacation time, etc.

it only applies to certain employers...all fed employers, and companies with 50+ employees, and i believe you have to have worked there for a year?

I had FMLA for 3 months at one point... it can be renewed at the end of a 3 month period, but I had stopped seeing my neurologist who was hesitant to sign for it at first and my primary doctor told me everything was in my head when I asked about FMLA from her... needless to say, I got a new primary after that...

I was surprised but my HR dept said you get FMLA for simply headaches without even a diagnosed condition to go along with it... guess it might differ from job to job in terms of how easily it is granted...

Hey Donna.....Are you taking the same Transfer Factor that I'm on??

Is it the Transfer Factor LymPlus??

I havent started it....you cant take it around food...and I'm kind of always eating....so there is just no opportunity for me to take it yet.

lol, guess I could never take it either... maybe I could sneak it in an hour after eating before I ate again an hour after that..

what is Transfer Factor anyway... I've seen it mentioned recently in this thread and saw it while reading up on some autism treatments the other day

[Mtndog]

3.) Rachel and Donna (and anyone else for that matter), did you get your CD57 results yet?

if I'm not mistaken, those taking antibiotics for lyme are mia, laura, and carla and then rinne and rachel also have lyme but aren't taking antibiotics, right?

Hi Charlie- I get my celiac disease 57 results wed and i can't wait!!!!!!!!!!

I'm not on antibiotics yet- just a very strong probiotic to get ready for the antibiotic.

I'll get my Igenix results in about 3 weeks. Very curious to see!

[Clark Bent as Stupor-Man]

Hi Charlie- I get my celiac disease 57 results wed and i can't wait!!!!!!!!!!

I'm not on antibiotics yet- just a very strong probiotic to get ready for the antibiotic.

I'll get my Igenix results in about 3 weeks. Very curious to see!

I saw that you were getting lyme testing done as well... hope it gives you some answers...

looks like the CD57 test is pretty common now... I think it's a "newer" test though I don't know how new... I know it's done through labcorp, which makes it easy to get it covered through insurance, at least for Horizon

[CarlaB]

1.) It's fine to take an antifungal at the same time as taking antibiotics for lyme, right? I'd be surprised if it wasn't, just want to make sure... I'm considering taking a small amount of caprylic acid again as I think the candida is affecting me moreso recently.. and on top of that, I'm gonna be starting antibiotics within a week so it would probably be proactive to take an antifungal along with the probiotics I'm currently taking

Yes, it's fine. I take Nystatin with my antibiotics.

2.) For those taking antibiotics, how much probiotics do you take and have you found certain brands you like? I currently take Klaire probiotics once a day and might up the amount while I'm taking antibiotics

I'm taking Ultra Flora, Theralac, and VSL#3. They all come up on a Google ... I order the first two from my doctor and the third online. I'm on an extra amount because of my GI issues.

If I'm not mistaken, those taking antibiotics for lyme are mia, laura, and carla and then rinne and rachel also have lyme but aren't taking antibiotics, right?

Mia was getting bicillin injections, but I don't remember if she's still getting them or not.

Donna had Lyme show up on ART and is not on antibiotics.

Rinne, you are right ... I can't stand the bickering on LN about treatment. I KNOW that this time around I NEED antibiotics, but my first THREE times dealing with this the alternative stuff worked. ALL of us can relapse ... so it wasn't because of the alternative stuff that I relapsed ... when I get off the antibiotics, I plan on doing alternative stuff permanently!

[CarlaB]

the thought of that never crossed my mind... interesting from a scientific standpoint if lyme can be transferred through sex..

The jury's still out on that one. They have found spirochetes in semen, breastmilk, too, but can you actually get it that way? I would think it would be even more widespread than it is if it were possible ... then again, I also think it's more widespread than I previously thought.

I was hesitant to get on heavy duty antibiotics long term, too. I understand your hesitation. I was so sick that I've not felt worse on the meds than I did before treatment, but I do feel as bad as I did before treatment during a herx. I don't know if that makes sense, my brain left when I started this herx that I'm finally coming out of .... slowly.

Adam dragged me out of bed at 1PM to take me to the gym. I worked out, but skipped cardio. I'm doing a little better now, but my mind is still kind of "out there."

[dlp252]

Okay, I can't get to page 1036 today, lol. Stupid dial-up! I can't get to a small little thread on another board...weird! I wonder if I can adjust one of my internet settings...would be easier to do if I knew what was wrong.

I had BioSET today...we did food. Bad news...I had outright reactions to the stuff we did today, so I have to repeat the treatment next week, and have to avoid the foods for a long time. The biggest thing today was chocolate. I reacted to every single thing that had chocolate or cocoa. I reacted to almost all grains...brown rice was okay, but Tinkyada Pasta was not...can't figure that one out, lol. White rice was bad...most seeds were bad, even sunflower seeds which tested okay on my original testing with Anna. I've been eating those a few times in the last couple of weeks. Good news cashews, almonds and walnuts were all okay, so I have to rotate those. And, as usual all these bad foods were affecting nearly every organ...fibroids/uterus came up again, as did the usual stuff. Insects/bug bite didn't come up today though. So, bummer of all bummers...I can't have chocolate. I am sad. This morning when I went grocery shopping (before my apppointment) I found truffled walnuts. OMG...they actually looked like I could have them, so I bought them and oh are they good. I ate like 8 of them (and they're pretty big). No wonder chocolate and cocoa came up today.

Okay, QUESTION! What is a nutraceutical? I am trying a liquid vitamin that Anna sells, and it says not to take with 2 hours of pharmaceuticals or nutriceuticals...what is considered nutriceutical? That's going to be a difficult thing to avoid if it just means vitamins, lol.

3.) Rachel and Donna (and anyone else for that matter), did you get your CD57 results yet?

I get mine on Tuesday and I can't wait!!! I think we should all know this week. Me on Tuesday, Bev on Wednesday, and Rachel probably sometime this week too.

Well, since I can't see what was on page 1036, replies to that will have to wait until Monday unless I can figure out some different Internet settings.

[jerseyangel]

Oh no Donna--not chocolate !!!!

I find it interesting about the foods that affected your uterus/fibroids. I remember the Kinesiologist telling me what I should be eating for that back in 2004. I just had had the endometrial ablation and was still having problems.

I think--and I could be wrong about this--that a nutriceutical is a food or liquid that has vitamins or herbs added to it.

Edit: Ok, I found this--

Open Original Shared Link

[dlp252]

Thanks Patti! I'm not sure I still understand what the manufacturers of the liquid vitamin mean. I'm assuming it would be okay to take with some of my other supplements since it's got vitamins in it...but maybe I'll take it apart from some of the other stuff I have to take...colon terrain comes to mind. Hum, I'll have to figure out how I can do this, lol.

[Rachel--24]

what is Transfer Factor anyway... I've seen it mentioned recently in this thread and saw it while reading up on some autism treatments the other day

Charlie....here is some info. on Transfer Factor.

Transfer factors are natural, microscopic molecules that reside in the bodies of all animals. They are messengers, passing immunity information about the presence of an immune threat

[CarlaB]

I think a nutraceutical is an herb that's used like a medicine ... like samento. I don't think it would apply to vitamins, but I don't know for sure.

Chloe had a soccer game. It was 86 degrees today, but little humidity, so it was nice out. She's miserable ... she has a terrible headache. Not only have all my kids been exposed to Lyme from me (except the adopted one), but they've also had ticks themselves. I'd be surprised if she doesn't have Lyme. I'm sensitive to the heat like that, too. She's had plenty of water, it's not dehydration.