Omg...i Might Be On To Something

[tom]

Ditto Andrea what everyone else said, glad you are hanging in there with it all.

Yeah double ditto, or ditto squared - however that works.

OH! The poll!!

I haven't had a cold or flu in maybe 10 yrs. Certainly 5 or 7, but maybe 10 or 12 or more. (Some yrs kinda lost - don't remember much)

It almost seems like I'll feel more 'normal' once I DO have something like that.

[confusedks]

Hello,

I have been staying up really late studying which my body doesn't like at all!!! I went to put my jeans on this morning and thank goodness I was standing next to my bed because I got this shooting pain down my back and then down my leg. I had to fall onto my bed! It was oh so painful at 5.30 this morning!

My appointment at the end of the month (on Halloween to be exact... ) is with the head of the orthopedic dept. at Children's Hospital LA. We are going to discuss what the next step is after a back brace, PT, exercise and no success if anything my back has gotten considerably worse. If I go to mall with friends, I have to rest because my back is is bad. So, I don't want surgery but at the same time, I hate having to use a handicapped placard at 17!!!!!!!! And I hate not being able to do things I should be able to do. And unfortunately my back and the curve WILL get worse over time.

I am also worried about putting Ti in my body, but at this point, I can't handle the pain anymore. We have tried so many things and unfortunately my body reacts to everything in the opposite way it should (remember the oregano oil and sleep?!) I am at a loss at this point, so I guess we will see what the Dr. says. But I guess he thinks it's serious because he usually has a 4-6 month waiting list and when we told his nurse about the case, she told us he really wanted to see me ASAP.

I am getting more energy. But I went off my diet tonight! I couldn't handle it anymore!!!! I am going to give myself a break until saturday or sunday and get back on. But, I had some gluten-free pancakes and I am SO BLOATED its crazy! I literally look 4-5 months pregnant. My neighbor is 5 months and I'm more bloated than her pregnant belly!! So, I don't know what the deal is with that.

I need to keep studying, so I'll pop in later to see how everybody is, and keep you all updated!

Kassandra

[AndreaB]

But I guess he thinks it's serious because he usually has a 4-6 month waiting list and when we told his nurse about the case, she told us he really wanted to see me ASAP.

It does sound quite serious. Sounds like Ti or no, it has to be done.....as you said the Ti would come out after a year.

Sorry about your pain this morning.....and now the bloating. That doesn't sound like fun either.

[fullagle]

I did some research on corn and its in pretty much everything...seems more difficult to avoid then both gluten and dairy.

Oh yes! Like high fructose corn syrup.....in nearly every packaged drink and food made today, it seems!

Didn't have time to read this entire thread, but hope you've done much better off the corn!

[CarlaB]

In a normal body response we are exposed to viri (or bacteria, something like that) and the body processes it, symptoms appear, and then it is resolved. In a higher stage of disease this does not happen, we are exposed to the viri and symptoms do not appear, and it does not resolve itself.

I've always thought this theory made sense. Our "symptoms" seem to be our immune response to fighting off the bacteria/virus -- runny nose, fever, etc. All that is the immune system working. If you're immune system does not do that, you don't "feel" sick.

I always caught everything going around and in a much worse way than anyone else. This is common for people with Lyme. I am that way now. Adam will get an annoying runny nose and I'll be sick in bed for two weeks.

However, at my worst, the past few years, I never caught anything.

Tom - I never get carded ... ... I must look like an old fart ... Once in a bar/restaurant we went to every week the bartender carded some college girls. I gave him a hard time and asked why he didn't card me ... he had a good answer -- "Because you're in here every week!" Thank goodness it wasn't cause I was OLD!

Kassandra, I'm sorry you're feeling so bad. That stinks. You have a great attitude and are really hanging in there. You should go into nursing or med school, after all you've been through you would have a lot of compassion.

[dlp252]

I (hopefully) get my results today from the neurotransmitter test. I have to go in early though...Dr. Rick is referring me to another doctor (she's new) in their practice who, I guess, has more experience with this. Apparently there are some things that are "off" (gee, something off in my brain, who could've guessed...bet any of my friends could have said that, lol). She only works in the mornings though, so I'll have to leave at 11:20...tried calling my boss right after I hung up with them but got her voicemail, so I'm hoping she'll let me go. My co-worker has been out sick since Tuesday. I'll see the chiro/PT after I see this other doctor. I'm thinking more traction is in my future today, lol.

I started drinking Pau D'Arco tea again, after a many year hiatus It really moves the bowels Was wondering how much is recommended to drink?? I am just doing tea bags so I drink one cup in the am and one cup in the pm.

I found some great info about it:

...

Does anyone still talk to Celia? I was trying to think of some of the regulars that have disappeared, and often wonder how they are feeling and what they are doing with treatments, supplements, etc.

I drink it. I buy the Traditional Medicinal brand and the instructions say you can have 1-4 cups per day for six weeks then it suggests taking a 4 week break. I think it also says to let it steep for at least 10 minutes. I'm currently on my break, but am thinking of starting it up again.

I was just thinking of Celia the other day...sad to hear about the divorce, she must be devastated indeed.

In a normal body response we are exposed to viri (or bacteria, something like that) and the body processes it, symptoms appear, and then it is resolved. In a higher stage of disease this does not happen, we are exposed to the viri and symptoms do not appear, and it does not resolve itself.

...

Just curious, sort of a poll who here never/rarely comes down with a cold or flu when exposed?

I've heard this too.

I rarely catch things anymore unless I drink out of someone's cup or get sneezed on directly or something. My friend is always sick but I don't catch it. She says it's a cold, but I often think she is having some of the issues I was having with my sinuses.

I have been staying up really late studying which my body doesn't like at all!!! I went to put my jeans on this morning and thank goodness I was standing next to my bed because I got this shooting pain down my back and then down my leg. I had to fall onto my bed! It was oh so painful at 5.30 this morning!

OMGOSH Kassandra! I feel so bad for you! You will probably be just fine with the titanium and it's only temporary. One thing that I'm sure my doctor would say, is that severe pain can stress your immune system as much as many other things. That was one of the first things he wanted to address to help my fatigued adrenals. The more stress you can take off of your body the better it can work, so taking care of the pain will help in lots of ways, and even if you happen to be sensitive to the Ti, your body may be more able to deal with it if you aren't in constant pain. Did that make sense?! I feel like I'm rambling today.

[Flor]

My whole life, I used to catch EVERYTHING that went around and it would be worse and last longer generally.

All that stopped after the terrible case of rotavirus I got two and a half years ago (which came in the midst of all the sleep deprivation after my son was born, mastitis, and three rounds of antibiotics). I date getting chronically sick from that time.

Since then, I don't get anything. When people in my house get colds, I might get a mild sore throat for a day and then it never develops into anything.

I wondered about this too and figured that it was due to my immune system being overactivated.

It's interesting to hear this has been the case with other folks!

[UR Groovy]

I think I'd be fine with a partial...I dont want to spend a fortune on an implant and I'm not too excited about putting anything "foreign" permantly in my mouth. I guess I'm a little traumatized to say the least.

This is pretty much how I feel. I'm not excited about putting more foreign matter in my mouth. I'm just a little squeamish (sp?) about an extraction. My wisdom teeth extraction was the worst I've ever heard of. It was a nightmare - a 2 month, horrible nightmare. I was wondering about a partial too. I think that would be okay.

If I could just get over my extraction fear (notice I'm not using the word phobia), I'd go that way, but I'm still leaning toward the crown. I agree, Andrea, I'd love to just get it pulled - I just need to get over it first.

Julie, it's really become an eye opener about how everything in our bodies are connected. If I had only known when I was younger what I know now . . .

BTW, I haven't had any cold or flu of any significance in 3 years. I got super sick with something 3 1/2 years ago & haven't had so much as a cough since then. Before that, I rarely got sick, but when I did, it was always worse than everyone else and lasted longer by a lot.

On head banging: I had a weird thing when I was a kid. I was a furious rocker. I would only fall asleep in the rocking chair (my little "pink chair" as it was called). And, I'm not talking about a little gentle rock. I broke that little chair 3 times - 3 times, it had to be fixed.

Anyway, thank you guys for listening and helping me get through this. It's been nice to have you guys to chat about this with. I realize that I'm kind of a drop in - drop out - skip this - pass by that, but I appreciate you guys. Thanks.

Have great weekends !

k

[Janeti]

My son 22 year old son was just this Wednesday diagnosed by enterolab with celiacs. For the past 2 years, monthly he ran fevers of 104. The Drs had no reason for this. I, of course as his mom, was freaking out. But myself, other than the complications from the celiacs, didn't get sick with colds, or fevers. I wonder why that was, it used to cross my mind from time to time Janet

[AndreaB]

Donna,

Hope your appointment is going well. Can't wait for your update.

Anyway, thank you guys for listening and helping me get through this. It's been nice to have you guys to chat about this with. I realize that I'm kind of a drop in - drop out - skip this - pass by that, but I appreciate you guys. Thanks.

Whenever you can be here is fine. That's what we're here for.

[confusedks]

Carla,

That's so funny about med school! I want to go into medicine and be a GOOD doctor. Not like any of the ones most undx'd Celiacs see. I would be more integrative than just pills, etc. I think we need more doctors like this in the world! I am trying hard to keep my attitude up. It is really difficult. Ironically I was up really late last night studying for my AP Biology class, will help me get into pre-med...hopefully!

Dlp,

I agree. It's interesting because one of the symptoms of my back problem is fatigue because your body has to work SO hard to compensate for the screwed up spine all the muscles all over my body are struggling BIG time. And, I totally got what you meant! I am in a brain fog almost all the time too, so I get what other fogged people are saying.

Andrea,

The bloating is crazy! I think I'm either intolerant to MORE foods, or something else is going on. I think it's the latter one.

Hope everyone has a healthy and fun weekend!!!

Kassandra

[happygirl]

Janeti-

Enterolab doesn't diagnose Celiac; only potential gluten sensitivity.

I don't know that Celiac or gluten problems would be causing fevers of 104----has he been evaluated for other problems?

[Rachel--24]

Janeti-

Enterolab doesn't diagnose Celiac; only potential gluten sensitivity.

I don't know that Celiac or gluten problems would be causing fevers of 104----has he been evaluated for other problems?

I was gonna say the same thing.

Enterolab cannot diagnose Celiac. There may be something else going on causing those high fevers....you may want to look furthur into that.

I think the misconception that Enterolab can diagnose Celiac Disease sometimes throws people off and another problem may go unchecked for that reason.

My own Enterolab results kind of threw me off track for a few months. I'm sensitive to gluten but not because of Celiac Disease. I also had real bad malabsorption....but not because of Celiac Disease.

If the fevers persist I would definately look into other causes.

[CarlaB]

I would also be looking for something else ... food intolerances shouldn't be caused by fevers.

Kassandra, that sounds GREAT! I have something for you to think about ... doctors run businesses. Think about majoring in business as undergraduate and taking lots of bio, chemistry, anatomy, etc. I managed to fit in 36 hours of Spanish into my business program, so you can take a lot of pre-med type classes.

Then, take the medicine type classes when you get to med school. That way you have a business background so you can go out on your own and do the doctoring you want to do. Just some free advice.

I bet your fatigue is aggravated your back trouble. The other day when I was packing the kitchen, I took some Vicodin because I had so much muscle pain. I actually felt better, more than "just" the pain ... in fact, much of the pain was still there. I realized then that much of what's making me tired is the pain I've been ignoring for so long ... pain of a chronic nature, not the intense pain you are having.

[Rachel--24]

This was in the Oxalate thread so I'm moving it over here...post from Lisa (Tobasco32)

HI all

IM HERE STILL!!

I have been real bad though. Lots and lots of banana splits with canned whip cream and chocolate truffles from hersheys. I can't help it! I eat so much ice cream it's like I can't help it.

I am soooo toxic I can't touch my food or it will lose it's taste or change colors. Dr. E said that I am probably releasing toxic gas through my skin. What should I do!!

Should I even cook my food anymore or have my mom? Might have to take a chance on her getting something in there like gluten or something.

What would you all do? would you cook your food and it be toxic or would you have to chance your mom cooking it for you?

She is not tooo careful. She tries to be though. I hate the way my food comes out though when I touch it. I have to wear gloves all the time. It smells bad and turns grey and tuff and no taste. but when my mom makes it at least I can taste it.

The steam of the food can't even be near my body or the food will change.

I think that's when the ice cream came in. I feel that I can at least taste it and stuff. I need to cut out the canned whip cream. That has to be bad with mono digliscerides and such.

How is everyone else doing? I will try to hang in there and not ice cream myself to death.

Lisa

[Rachel--24]

Does anyone remember when I was prescribed Ketotifen (Keto) for healing "leaky gut" over a year ago?? I had a long conversation with the pharmacist about leaky gut/gluten intolerance, etc....he was really nice and I had such a good feeling about it back then.

I never finished the Keto and obviously I had alot more going on. I still have some left over and had been thinking about refilling later on when I'm making more progress with everything else.

I found this post on LymeNET today so I think I probably will get back to the Ketotifen at some point.

Note: From a recent seminar directed at:

Autism Recovery: A practical resource-oriented Workshop for Concerned Parents and Practitioners by Institute of Neurobiology/ faculty Klinghardt, MD PhD /Derksen, ND/ Clark, RPh

There were other items covered, as part of the treatments, addressing GI Healing and Parasitic and Antifungal Treatments.

Treatments for "Leaky Gut Syndrome"

Histamine Reducer:

Ketotifen (Zaditen) by Sandoz and compounding pharmacies.

Compounded at Clark's Pharmacy (not commercially available in US)

Used for 30 years world wide to treat asthma in children

Antihistamine and mast cell stabilizer reduces the harmful effects of histamine and inflammation that allows the mucous layer to come back and heal the intestinal wall.

Compounded as l mg capsule and 6 oz (90 doses) l mg/2ml solution

Generally taken: Adult dose - start with l capsule at bedtime until drowsiness is gone then 1-2 capsules 3 times daily 30 minutes before meals for six to twelve months depending on severity.

Pediatric dose - (1 mg/2ml solution) start with 2 ml once daily until side effects are gone , then 2 mls 3 times a cay 30 minutes before meals for six to twelve months depending on severity.

Side effects: Usually disappear spontaneously with continued medication. Sedation and, rarely, dry mouth or slight dizziness may occur at the beginning of treatment, CNS stimulation, such as excitation, irritability, insomnia and nervousness have been observed, particularly in children. Increased appetite has also been reported.

Dr. Amy must be using this now as well...cuz she's listed on the top with Klinghardt...Clark is the pharmacist I had talked to back then. He was really knowledgable.

[Janeti]

The list with my son goes on and on. This is my first baby that I almost lost when he was 5 days old. For the past 4 years, it has been the worst with him. He has had severe rashes that I had taken him to the ER, which is the same rashes that he had as an infant, and growing up...but these were all over. He had a chronic cough since he was a little boy. Also, these past 4 years he has had a personality change, couldn't concentrate in school, and couldn't finish a meal without winding up in the bathroom. This kid has spent most of his life doing bloodwork, surgeries that were suppoed to stop the chronic ear infections, tonsils taken out at the age of 20(which isn't fun) After I was diagnosed this past February by endo, I knew what was wrong with him. I took him to a GI Dr, that even after he heard our families history, told him, take nexium, and come back in 2 months......He said, thats it, hes done. Why didn't the Dr want to do an endo on him???

During this past summer, I went on the internet and brought up images of DH. I showed him, and let him compare to what was all over him...He knew that he also had celiacs. He immediately went gluten free. He is now back in college, the cough is gone, and has not run 1 fever since. During these past couple of weeks, I am hearing my old son emerge. He does not want to go back to the dr, or any dr for that matter, but just wanted some kind of proof. We know what his DNA is, and it is enough to keep him gluten free, and he is getting healthier by the day. I don't ever want my son to get to the point where I was at. Every time he was away at school, my husband and me were always on stand by, waiting to run to the school, and take him to the hospital, this last year of school will be different, it will be his best.

I've posted this before, but one more time. I lost my mom last August. For 40 years she had an elevated white blood count, and constant GI issues, which turned into lymphoma. My mother died through Drs neglect, or ignorance. It infuriates me. Right now this is working for my son, I can't remember when I have seen him this happy and healthy. I can't ask for anything more. Janet

[CarlaB]

Janet, response to the gluten-free diet is proof enough!

[dlp252]

Okay, got my results and as expected my brain is whacked, lol.

Cortisol was within range

Melatonin was WAY low at 10.6 (range 25-60)

Epinephrine was too high at 5.8 (range 1-3)

Norepinephrine low at 17.4 (range 20-30)

Serotonin was within range

Glycine was WAY high at 768.9 (range 150-350)

GABA was very high at 14.2 (range 1-3)

Glutamate was high at 31.0 (range 8-20)

PEA was within range

Histamine was within range

Creatinine was 43.6, but no reference ranges were given

So, doc recommends cutting back on the 5-HTP since my serotonin was okay and it can elevate some of these other things.

She also wants me to get a sublingual melatonin to see if that will work better.

I get to take a supplement (targeted amino acids) that the lab recommends...have to order that.

They gave me a nice little brochure which explains neurotransmitters and what they do, so if anyone is interested I can type that up and post it. In fact, maybe I'll just do that anyway just for the heck of it, lol.

I also had a chiropractic adjustment, traction, and the PT guy spent about 20 minutes on my back. They want me to come back Monday, and will probably have to go in a few times week until the back is completely clear.

Kassandra - funny how one brain fogged person can nearly always understand another.

Rachel - the keto sounds interesting...I sort of remember that from last year, but don't really remember much. Thanks for posting for Lisa!

Janet - WOW your son has been through a lot...I'm so glad he's doing well. I was diagnosed by Enterolab with gluten intolerance, and I also did their gene test, and do have a celiac gene. I'm pretty certain I have celiac. I've been plagued with a lot of infections the last couple of years, but my core temperature is so low I don't tend to get fevers.

[Rachel--24]

Right now this is working for my son, I can't remember when I have seen him this happy and healthy. I can't ask for anything more. Janet

Great news!

If the diet is working and the symptoms are subsiding...I agree...what more can you ask for.

[happygirl]

Janet, that is wonderful news and I hope his health continues to improve. He's lucky to have a caring mom like you.

[AndreaB]

Right now this is working for my son, I can't remember when I have seen him this happy and healthy. I can't ask for anything more. Janet

That is great news! As the others have said diet is proof. Although Enterolab can't diagnose celiac's itself they do tell you whether you have a sensitivity to gluten. With the celiac genes you don't really need anything other than diet response either.

Donna,

I'd be interested in whatever you want to post on neurotransmitters.

[Matilda]

...

[Rachel--24]

Really I'm wondering could this all just be yeast? Should I ask for nystatin? Has anyone got any better taking it? I took it years ago for a yeast infection, and it worked miraculously when nothing else did. I did take a big cocktail of antibiotics before my current problems started.

Hi Matilda,

My opinion is that YES...most (if not all) of the symptoms can indeed be caused by yeast. Its a menace for sure!

I'm pretty certain that the fungal problems I'm dealing with account for most of my symptoms. Diet and antifungals can make a big difference but I'm not one to beleive that it is a "cure".

So far I have not seen anyone accomplish this without treating underlying issues. In saying that I mean that I have not seen some become completely well and resume a normal diet...which includes foods that feed yeast. I *have* seen many people control the yeast overgrowth by remaining on a restricted diet.

Even though the yeast symptoms are at the surface....there are always underlying causes. I dont have alot of faith in the Dr.'s or naturopaths who focus on the yeast without looking for whats going wrong in the body to allow this problem to persist.

My fungal issues ....even though they are significant....are not my priority. I know that it takes getting to the root of the problem and correcting the imbalances in the body to overcome the yeast overgrowth.

There are some very good integrative Dr.'s out there. Most of us here have have good luck with finding Dr.'s that we're comfortable with and who are very knowledgeable. Hopefully, you will also have a great experience.

In my opinion the Dr. should be looking beneath the surface. By this I mean.....dont stop with the yeast but question WHY it is there. You dont want someone who will treat the symptoms.... ultimately I think you would want to get to the root cause. Chronic candida would be a symptom....an indication that something is not right.

I have taken Nystatin..nothing I have done with regards to the yeast has been a cure. There have been times that its been under control but its never ceased to be a problem. I am not wanting to keep to a restricted diet for life....and I want my body to not have to deal with that constant burden of things not functioning as they should. The diet is far too restrictive and in my opinion our bodies need more.

SCD did not work for me either....its obviously not for everyone. Trust what you're body is telling you.

I would think that a good integrative Dr. would first look into ruling out the things with high prevelance....one of those being Lyme. Yes....Lyme can present with those spells of fatigue and weight loss. I think they should check for all the things that can cause these ongoing symptoms...parasites, yeast, viruses, bacteria overgrowth, Lyme, etc. If these things are problems heavy metals should be tested as a root cause for these infections and the resulting imbalances.

This is my opinion and these are the types of things that all of my Dr.'s have looked into for my own ongoing symptoms. Somebody else will hopefully have more to add to that.

I would love to hear about your experience once you've met with the Dr.

Good luck...I hope it goes well for you!

[confusedks]

Carla,

Thanks for the free advice! That's exactly what I was thinking of doing. I also think a lot of the fatigue is worsened by my back. It has gotten way worse since school started and I think it's because of all the walking and backpack carrying, etc. It is really limiting at times, but whatever! I actually am getting copies of x-rays and I was going to somehow email a copy to my dad (he lives in New Zealand), so I'll maybe post a link to them if anyone is interested in my "CURVY" spine! (My physical therapist called me wedgie! because my vertebra are no longer rectangles...they are triangles) Sorry, rant!

Kassandra