Omg...i Might Be On To Something

[CarlaB]

Sherry, sorry about the herx, but good to know you got some better Zith!

Susie, even here they only talk about supplementing magnesium ... the thing is, calcium and mag go together ... sometimes a calcium deficiency can be caused by a mag. def.

Andrea, sounds like you did the right thing .... my son has never tried to hit, but he is unbelievable disrespectful. Adam and I are always in awe at the level of disrespect he has.

Sherry, he's one of those kids that everyone seems to like ... he has lots of friends. It's only when someone requires something of him. He has had this behavior since birth! Believe it or not, he was defiant before he could crawl very well ... I remember clearly one day he was playing with the VCR, I moved him, he scooted back, I moved him, he scooted back .... I moved him and said 'NO' ... he scooted back ... I finally slapped his hand, said 'NO' and moved him ... he scooted back ... I put him in the playpen (the only kid I used a playpen for).

We've tried diet, supplements, chiropractic, psychologists, etc. Puberty helped his uncontrollable behavior .... it's a shame to see such a smart kid do so poorly (bad grades, no ambition/motivation).

I have to tell him to take every single pill of his Augmentin now that he's not feeling sick ... I really don't think I'm going to have him tested for Lyme ... it would cost a couple thousand dollars to take him to NY, etc., and for what? He won't comply with treatment. I'll just make him use the rife machine when we get it. If he herxes from rife, we'll know.

I can't remember which of you said it ... but he is invincible right now ...

[melmak5]

So I haven't posted in a bit, but I received some interesting information from the allergist I just started seeing, which might be helpful to others.

I have been gluten free for over 4 months and I still have the following symptoms:

Excessive Burping

Burping with Regurgitation

Heartburn (especially w/fruit and rice)

Fullness

Very loud abdominal noises

Abdomen pain, distention, bloating (outward pressure)

Sharp stabbing abdomen pain (short, fleeting, inward)

Diarrhea, Constipation

Rectal Bleeding

Headaches

Dizzy

Fatigue

Exhaustion

Brian fog (unable to concentrate)

Hives/rashes (not DH)

Bumps on wrists/foot (2+ months)

Itching/pain in mouth with fruit

Skin peeling on head/eyebrows

I was test, via skin prick, for food allergies, all were negative, but my entire test site, including the controls, reacted. So the verdict is that I am not allergic to foods, but that my body is allergic to something and hypersensitive now.

He said that the reactions I have been having to fruit (lips, gums, tongue swelling) maybe be cross-reactivity (if you are allergic to dust mites, you can react to shrimp, even though you are not allergic to shrimp... there is a list of these cross reactors).

He also said that hormones can cause the body to react to things as if it were allergic, even though its not. I just started reacting to fruit about a month and a half ago... the same time they put me on birth control to see if it helped with sharp abdominal pain that might be ovarian cysts even though my ultrasound showed a normal uterus and ovaries.

I have stopped the hormones and HOPEFULLY I can bring fruit back into my diet again.

He said that while I am not ematiated, that only being able to eat 8 foods, means I am most certainly malnourished and has suggested an elemental diet. All predigested foods, so that all my body needs to do is absorb, not digest anything.

His theory is that maybe I have/had a virus that damaged my intestines and that I cannot get better because I cannot digest food, and I cannot digest food because I am not getting better.

The answer... baby formula and/or hydrolyzed proteins and very simple foods.

He also repeated my celiac antibodies to see if they have gone down. He said if they are at the same levels after 4+ months gluten free, that is probably a virus, not celiac.

He also did another 20+ blood tests for various things, including lyme.

I am hopeful with this person on board that hopefully I will get to the bottom of it.

[melmak5]

FYI, these are my test results all three of my new doctors are questioning...

Tissue Transglutaminase Ab, IgA - 58*

(normal is 0-19)

Gliadin Peptide IgA - 19

(normal <20)

Gliadin Peptide IgG - 27*

(normal <20)

I should have follow-up numbers in 1-2 weeks.

[AndreaB]

Wow, am I herxing this week!! I switched to Zithromax (versus another brand of azithromycin) the day before I started my two days of flagyl this week, and yesterday and today there's been strong herx symptoms.

Wow! Sounds like the Zith is working! Hope you get over this herx quickly. Have a safe trip.

He won't comply with treatment. I'll just make him use the rife machine when we get it. If he herxes from rife, we'll know.

I can't remember which of you said it ... but he is invincible right now ...

I'll be waiting for updates on the rife machine. I said he was invicible. Seems to be a common thread among teens. I thought I knew everything until I reached my 20's....then realized my parents knew more than I gave them credit for.

So I haven't posted in a bit, but I received some interesting information from the allergist I just started seeing, which might be helpful to others.

Hopefully going off the hormones will help you.

Please be careful with the hydrolyzed foods. They are high in MSG, which can cause it's own problems. If it's short term and completely necessary it probably wouldn't be bad. I don't know if any toxin binder can help with MSG though......Rachel?

I'll be curious as to what the rest of the testing comes back with. Keep in mind if he doesn't use Igenex lab for lyme testing that it very well may be false negative. I forget where you were.......are you in the north east coast?

[Rachel--24]

Hi Melmak,

I never tested positive for any sensitivities to food or environmental allergens...only in muscle testing but not in blood or skin tests.

My immune system is definately in a reactive state and I do react to nearly everything...but nothing shows up.

I've always felt that it was because its not the actual foods that are the problem....its more having to do with the compounds in the foods. I dont think my enzymes are functioning properly and my body is unable to break down certain chemicals...even natural ones.

If you're reactive to certain things like histamines, glutamates, salicylates, oxalates, sulfites, molds, etc...then you may react to foods high in these things but that wouldnt show up when you're being tested for the foods.

Thats what I had originally suspected when I wasnt testing positive for anything but yet so reactive....it did seem to be the case for me. I'm not able to break down these things.

Oxalates seem to be a big one for me...and then I'm highly sensitive to food-borne molds as well.

Unfortuntely, they cant test for these kinds of sensitivities.

I agree with what Andrea said about the hydrolyzed proteins.....if you have problems with those it could be you're reacting to MSG.

Also the Lyme testing...most likely it wasnt Igenex which means even if you have Lyme the chances of it coming back positive are not very high.

I just posted some info in another thread which explains why its important to use the lab with higher sensitivity when testing for Lyme.

You can read the explanations in my posts on this page...

Open Original Shared Link

[Rachel--24]

I survived my IV...DMPS is sheduled for next Friday.

Jin...the IV I had yesterday wasnt for chelation...it was just Vit C, minerals and glutathione.

Next Friday it will be the same except with the DMPS added in.

I tried to post about my experience last night but I lost my post and then the board was down.

Tried again this morning and lost my post AGAIN!

So hopefully later I can tell you guys about it.

[jerseyangel]

I survived my IV...DMPS is sheduled for next Friday.

Jin...the IV I had yesterday wasnt for chelation...it was just Vit C, minerals and glutathione.

Next Friday it will be the same except with the DMPS added in.

I tried to post about my experience last night but I lost my post and then the board was down.

Tried again this morning and lost my post AGAIN!

So hopefully later I can tell you guys about it.

Glad to hear you got through ok yesterday.

[AndreaB]

I survived my IV...DMPS is sheduled for next Friday.

Hope all goes well Friday. We'll be anxiously awaiting your posting. If you can't, or don't feel like posting call me this weekend.

Did you get ahold of Amy yet?

Mitch said another option for you, if you don't mind long car rides, is to fly into Portland and I could pick you up there, take you to your appointment and take you back. It would be a 3-3 1/2 hour car ride one way. I guess it depends on scheduled flights/times etc between Seattle and Portland from where you are. Portland is easier to get in and out of though. I could probably pick you up in Seattle too.

[CarlaB]

Hi guys, just had a phone consult ... I'm waiting for her to call me back for Chloe's then I'll tell you about it. We switched some of the drugs around, so I'll send that part out in an email.

Rachel, I'm glad the IV's are working for you! I can't wait to hear more.

[melmak5]

I am in Massachusetts, so yes, Lyme is now on my radar.

No it wasn't the good test, but this one my insurance is covering, so I figure its a place to start.

I react VERY strongly to MSG, so I am hoping that I neither have a reaction, nor have to keep this up for very long.

I have tried two protein powders and the only success thus far, is burping, bloating and gas.

I'm going to try #3 tonight and see if it works.

Everything causes me to bloat and burp, so its not fair to blame the protein, but I need something that isn't as harsh.

[CarlaB]

Melmak, good to see you here, you are in the right place. I know how you feel, I used to get severe stomach pain with just about anything. BioChem undenatured whey protein has been great for me.

I wanted to tell you what the PA said regarding our son ... she said that with minor symptoms and a flare like he had, the treatment would probably only be a month or so, but that there was no point in even bothing to test since he would be non-compliant with treatment.

Chloe's new IGeneX testing showed IgM 34 IND, and 39 IND ... IgG 31 IND.

I know we've discussed what IND means here before, and I don't want to start that discussion again, but my LLMD considers it a weak positive since it's not negative ... so they consider her to have 3 Lyme-specific weak positives. That's two more than she had before, but that's probably because her immune system is recognizing it now, not that she's getting sicker.

[Green12]

Just a quick driveby post...

I've missed TONS of posts, lots of scientificness and many updates from everybody.

I just wanted to say you've all been on my mind

I'm going to come back later and get all caught up with all the latest.

[AndreaB]

Everything causes me to bloat and burp, so its not fair to blame the protein, but I need something that isn't as harsh.

Have you tried cooking something and pureeing it youself? Don't know if that would help you at all but your system wouldn't need to digest it that way.

I hope you stay with us and keep us updated.

I know Rachel was down to 5 foods for quite awhile. It's kinda hard when there are so many things to look at in trying to figure out what causes you the least amount of problems.

I know we've discussed what IND means here before, and I don't want to start that discussion again, but my LLMD considers it a weak positive since it's not negative ... so they consider her to have 3 Lyme-specific weak positives. That's two more than she had before, but that's probably because her immune system is recognizing it now, not that she's getting sicker.

I'm glad you were able to get her treated sooner rather than later. I'm sure it will make a huge difference in treatment time for her. I'll be looking forward to your email and any other updates.

I just wanted to say you've all been on my mind

Good to see you popping in Julie. Hope today is going better for you than the last few.

[confusedks]

Hello everybody,

Well, I only fell asleep during a little bit of my PSAT!! I guess that was good, but I'm feeling terrible today. So it turns out I won't be able to get in to the GI for another MONTH so we decided we are going to go to a guy my mom went to for some health problems and he does LYME TESTING!!! YAY!!!!!!!! We are going for the blood draw on Saturday. He is also going to run other tests, and I will make sure he uses IgeneX. I am going to take the list of 75 symptoms from the Lyme thread and print it and circles the ones I have so it is easier and my brain fog doesn't screw up my memory! I always seem to forget to tell the Dr. the simplest things that are so problematic for me...like the bloating!

Today we went to UCLA on a field trip and walked around for HOURS, in a frantic way. We literally walked all day long and I am exhausted! I have a ton of tests tomorrow, and I have no idea how I am going to get through tonite because I have to study.

Also, I have been having a hard time emotionally, like my life is falling apart! I just feel like I'm not on the mends with my health, it's a constant up and down. At least most of you guys are in the process of getting better. It's like I am where you were 2 years ago. I feel so "back in time!" I guess I just need to give it all time, but it's really making me angry right now!

Question, if I'm fasting for the non-Lyme blood tests, will that affect the Lyme tests? I can't imagine it would, but I just want to make sure.

I have been thinking about all of you...you all are so inspiring and are the only reason I haven't completely given up on all of this!

[AndreaB]

Well, I only fell asleep during a little bit of my PSAT!! I guess that was good, but I'm feeling terrible today. So it turns out I won't be able to get in to the GI for another MONTH so we decided we are going to go to a guy my mom went to for some health problems and he does LYME TESTING!!! YAY!!!!!!!! We are going for the blood draw on Saturday. He is also going to run other tests, and I will make sure he uses IgeneX. I am going to take the list of 75 symptoms from the Lyme thread and print it and circles the ones I have so it is easier and my brain fog doesn't screw up my memory! I always seem to forget to tell the Dr. the simplest things that are so problematic for me...like the bloating!

Yay for staying awake for most of the PSAT!

I'm sorry you're still feeling crummy.

As far as the lyme blood draw. I know Igenex likes the blood rec'd before the weekend so it doesn't sit. I think it may need to be refrigerated? I'm not sure about that though.....Carla....Rachel?

I'm glad you're going ahead with the testing. I hope the doctor you go to uses Igenex.

[mftnchn]

Susie, my buffered C powder contains calcium ascorbate, magnesium ascorbate, and potassium ascorbate. (Thorne) Maybe a buffered C powder would work for you?

[mftnchn]

Carla, your son does really sound challenging! Maybe a military boot camp stint would be good for him in terms of learning respect. :huh:

Andrea, I think you are right, sometimes people settle down in their twenties. Perhaps it is growth and developmentally related. Sometimes it is finding a focus or interest. Sometimes it is life's natural knocks.

[mftnchn]

Feeling better today except for sinus stuff--like a bad cold. BM slightly better....still hoping that the Zithromax brand is going to help.

Jin, I don't know about generics in the USA, except at least the active ingredients should meet standards, that isn't the case here often. I think for inactive ingredients, you should get the pharmacy to call and clarify what they are because I think it is going to vary.

[Rachel--24]

I wanted to share something with you guys.

Remember the autistic boy at my work?? I've still been working with him all these months...and I have some exciting news!

Well, all of this time he would have ups and downs...some days went good...others not so good. I got much better at communicating with him and calming him down on the "not so good" days. I have a really good relationship with him so he'll usually listen to me....but we were having alot of bad days.

I would always ask him what he'd eaten for lunch on the bad days cuz his behavior was noticeably worse after lunch. Noone else really made that connection but having learned so much about food it totally stood out in my mind and I always wished I could put him on a gluten-free/cf diet.

He was sometimes a totally different kid after lunch...not cooperative and complaining alot about aches and pains. He was always saying he was too tired to do anything that was asked of him. He would refuse to do things and just say over and over again that he was too tired. His legs would hurt, his arms, his feet, his head, etc.

He would *always* say that his arms hurt from getting carts or from bagging groceries...he'd been saying that from the time he started working there. It was a daily thing and usually the last hour of his shift he'd be complaining alot. He only works 4 hours...starts at 9...eats lunch at 11....by 12 he's exhausted and hurting...then he leaves at 1.

He doesnt eat junk food...so he's already on somewhat of a restricted diet. One day when I told someone else that I wished I could eat some snickers or Almond Joys...he said "Those are POISON!!".

So for lunch he eats a sandwhich and a fruit....no sodas or milk. I'm never there when he eats cuz I'm out of the store during that time.

Everytime I asked him what he'd eaten it was always "ham and cheese sandwhich".

One day was really bad and I was having alot of difficulties with him. He was complaining about alot of pain. My co-workers would tell me not to pay attention to him cuz he just says it to get out of working.

Yeah...I seriously wanted to smack some sense into them.

I knew I couldnt do anything about gluten but I'd done some reading on the autism boards and it seemed like the parents noticed more severe problems from casein.

I would notice that his eyes looked drugged (especially after lunch), some days he had noticeable excema and/or runny nose. He also would break out in sweats and complain of being too hot and then too cold.

On that really bad day I asked him if maybe something he ate for lunch was making him sick?? He said "I dunno....maybe." I said "Maybe the cheese??" He said "Maybe the ham.....I think ham is making me sick."

So I told him again "Maybe the cheese??" He said "Yeah...maybe the cheese is bad."

I said "Lets try to not eat cheese anymore.....just eat a ham sandwhich w/out cheese and see if you feel better...OK??" I told him I thought that maybe the cheese was "bad" for him. He said he would not eat cheese in his sandwhich.

So I had to bring it up about 100 more times that day to get him to remember it. "So what are you gonna put on your sandwhich tomorrow?" "Remember...no cheese...Ok??" Over and over again all day.

The next day I asked him what he put on his sandwich. He said "Just ham...NO CHEESE"

He had NO problems all day and he was HAPPY and smiling and singing all the way till the end of his shift!

I said "I think you feel better without cheese!! Do you feel better today??" He said "Yup...cheese is BAD".

Sooooo....this was about a month ago and we have not had ONE bad day since going cheese free!!

His eyes are clear....his skin looks better and he has not said ANYTHING about any aches or pains....not even once. He has not said that he feels tired or that his arms are sore...or that his head hurts....or that he cant do something that he's asked to do. He is HAPPY and talking up a storm everyday. He has not had any sweating...no complaints about too hot or too cold.

OMG....I cannot even tell you guys how it makes me feel to come back from lunch everyday and see him like this!! I am still so amazed.

The fatigue, behavior changes and other issues were an everyday occurance with him and now we have not had a single bad day. WOO-HOO!!

Today I asked one of my bosses if hes noticed any changes?? He said "Yeah...he seems really happy lately."

He doesnt feel comfortable with everyone and he does have his guard up around certain people. I noticed that when he was feeling really sick and telling me how he hurt all over.....if I tried to bring it to the attention to the bosses he would stiffen up and then tell them that he was OK.

He was afraid to tell them that he wasnt feeling good.

Anyways....this is a DRAMATIC change. The results of just eliminating cheese from his sandwiches has GREATLY exceeded any expectations I had about this.

It makes me feel so good inside to see him laughing, singing, focusing and not being in pain.

Nobody else can really appreciate it cuz they dont really understand...they didnt notice all the little things like his eyes, the excema, the sweating, etc. I'm the only one there who really pays attention to everything going on with him each day. Everyone else can see that he's happier now though.

[Judyin Philly]

Rachel

that was so sweet of you to notice this boy and try to help.

That is really someting isn't it

I get grumpy after casein................but never knew why.

I hope the boy keeps it up and the other employees take notice that he's trying.

nite

judy

[AndreaB]

I wanted to share something with you guys.

That is super exciting! Just think, if you hadn't researched all that you have, or even have gotten sick, you wouldn't have been able to help him.

I'm just so excited for him!

[jerseyangel]

Rachel,

Thanks for sharing that story. That's so amazing....I wonder if there's any way you could speak to his parents? Maybe they never heard of or thought seriously about the gluten-free/CF diet.

Just this morning I was watching the news about an 18 year old autistic boy lost in the woods since Sunday. They found him safe and sound yesterday, but the first thing they gave him was sandwiches and his family was promising him ice cream in the hospital. He is non-verbal, and for all I know, his parents tried the diet--but what if they didn't and he is one of the kids it would help?

[mftnchn]

That's a wonderful story, its so neat that you were tuned into him. So many with issues like that are just ignored by the majority of people.

[dlp252]

Wow, Rachel, that is so GREAT!!! I am so very proud of you that you took the time and interest in this kid! What a difference! I tend to agree between the casein and the gluten, I think cutting out the casein has made the most difference in my health, especially with the sinuses. Hard to tell which one was to credit, but I know that if I eat too much regular chocolate, I start getting congested and brain disconnected again.

[CarlaB]

Rachel, what a great story!

It's like I am where you were 2 years ago. I feel so "back in time!"

I wanted to quote this part because I think it might make you feel better to know I was tested by IGeneX last December, so you're not even ONE YEAR behind me!!

YAY on only sleeping through part of the test, LOL.

I hope you had a good time at UCLA even if it did make you tired.

Carla, your son does really sound challenging! Maybe a military boot camp stint would be good for him in terms of learning respect. :huh:

Actually, we sent him away one semester several years ago to a very strict Catholic school. The military schools looked too undisciplined ... they all required kids who had an independent nature (ones who will be trusted to work on their own) and the military schools had a lot of free time. The Catholic school had structured recreation, so there was no just sitting around in your room.

It was a good four months for the rest of the family to regroup. He got "the talk" from them ... "We've never had to expel anyone before, we don't want you to be the first." He got "F's" in both self-control and ... can't remember, some other behavior though.

He's a piece of work. And it's really strange that he's this way as he has a strong set of ethics and morals ... it's just behavioral that's a problem (anyone else thinking "Lyme brain"??).

Since he's been on Augmentin for 10 days, I'm wondering whether it would be a good idea to just continue him on with my leftover Amoxy ... Augmentin has Amoxy in it .... if the PA was saying he'd only maybe need a month ... I've got that ... better to keep him on for a couple more weeks and take the chance of curing him ... she wasn't diagnosing, she was just saying that someone with so few symptoms generally needs a month.