Omg...i Might Be On To Something

[confusedks]

So I went to the Dr's office to have my PICC line flushed and it went well. They changed the dressing which was supposed to be changed 24 hours after it was inserted...but oh well. I have 5 stitches...lol! I thought there was only one.

The nurse taught us how to flush it so we now know how to take care of it. I hope my mom remembers everything properly...lol. They also gave us 3 days of heparin, saline, etc. and a rx for more stuff.

Overall a good day except the insurance stuff. My mom is going to have one of her attorney friends call them and talk to them about this crap that's going on.

Kassandra

[AndreaB]

Kassandra,

I'm glad you got the PICC line flushed. I assume the IV's are on hold again thanks to the insurance company?

That is soooooooo maddening!

I do hope you'll be keeping the LLMD appointment on the 14th.

[confusedks]

Andrea/Everyone,

I am DEFINITELY going to be keeping the LLMD appt. My mom is actually starting to reallllly come around to the idea of the LLMD. She is hoping he will have some answers for us because nobody else seems to.

It's looking like we MAY start the IV's on Tuesday...but I don't know yet. We are still waiting for the insurance company to call to find out what they will do.

What the case worker told my mom today is that the ins. co said since we didn't have a case worker in March (when I had the iron IV's the first time) they won't take the money that my mom paid out of pocket and apply it to the $3,000 deductible!!! My mom is really angry and will be at an attorney's office on Monday and she is going to talk to her. She knows my mom well and she said she would be willing to do anything for us.

If we could get them to apply the money she spent in March to the deductible, we won't have to pay more than a couple hundred dollars, which would be great! We're also going to have them include the dressing change, the flushes, etc. so it will get closer to the $3,000 deductible.

Hopefully between the attorney, and the money they will freak them out to the point of just covering the stupid IV's.

Kassandra

[AndreaB]

Hopefully between the attorney, and the money they will freak them out to the point of just covering the stupid IV's.

I certainly hope so.

I'm glad to hear that you won't have to cancel the LLMD appointment. I really think that lyme is behind much of what is plagueing you right now.

[CarlaB]

I have a mystery for all of you to help with.

My BIL has chronic diarrhea. He is stick thin. If he eats, he has d.

I thought a good place to start with him would be Humaworm and VSL#3 so I sent him both. He's been taking them ... he's seen no changes for the better or worse after about a week .... so it must not be a problem with candida, or he'd have felt worse, gas, or something.

What do you think? I think he should finish the month, and he will, but what do you think would be good to try next? Another month of VSL#3 and oregano oil?

Any ideas of what besides parasites, bacteria, etc. could be behind this?

I don't think he'd be as open to an elimination diet. He went to a PCP and he found nothing. I don't think he'll go back to the doctor .... he only went to get his dad off his back anyway.

[AndreaB]

I don't think he'd be as open to an elimination diet. He went to a PCP and he found nothing. I don't think he'll go back to the doctor .... he only went to get his dad off his back anyway.

Without an elimination diet, I don't know.

You think gluten is a possible problem with him?

[CarlaB]

Without an elimination diet, I don't know.

You think gluten is a possible problem with him?

Well, I doubt it. There's no one else in the family who has any food intolerances. I know that doesn't rule out celiac, but it's a long-shot. I'd like to see him get tested .... but I still think it's unlikely.

He was in the military, so I was thinking he could have a bug in his gut .... if that's the case, it could take time ... a week isn't very long.

I don't know though ... that's why I wanted to ask the experts.

[mftnchn]

Boy, I'd sure do the celiac blood tests. I had no family history either. I think I'd want a biopsy too. Also the infectious celiac like illness forget what it is called.

[AndreaB]

He was in the military, so I was thinking he could have a bug in his gut .... if that's the case, it could take time ... a week isn't very long.

If he was in the military I would guess metals. Mitch was in the military and they have numerous rounds of shots, with mercury and aluminum. Maybe even a vaccine reaction that's coming to light for some reason. I don't know how long he's been out or how long he's had the D, so that one may be very far fetched.

Dr E said oil of oregano doesn't have the same effect on everyone. I was on 15 drops a day for the bladder infection and it didn't phase me a bit.

I would also give him the month on the humaworm.

[confusedks]

Carla,

I would suggest Celiac testing...like Sherry said, I know a lot of people at Celiac camp who didn't have ANY relatives with genes or Celiac, so it's possible.

Also, you know...it's just a simple blood test.

Kassandra

Also, the oregano oil...I would take 2 drops and I would sleep for hours! So, I guess it affects everyone differently like Andrea said.

Off to watch Nanny Diaries...

[ami27]

I am still having neck pain. It is very stiff and painful. My neck is normally tight and occasionally painful, but usually a good massage from my husband will ease the pain. Now it seems like nothing I do will ease the pain. I have put heat on it, husband has massaged it multiple times, detox baths...nothing seems to help it. This all started when I started the Chlorella. I upped my dose of Chlorella a couple of times. It seems to be better today. But, still not 100%. I'm trying to decide if I should just stop taking it. I'm not having any other ill effects from it. So my thought is that it has stirred up something in my neck. I'd like for it to be moved out and not just stop taking Chlorella and whatever 'it' is be redistributed or just stay stuck in my neck. Yesterday was the last time I upped my dose to 9 capsules. I was thinking about trying that dosage for a few more days along with detox baths. I may try to get in for a massage too. By Wednesday if my neck is still hurting I guess I'll give up on the Chlorella.

I have my Humaworm, but I'm not taking it until I can get this neck thing figured out. If it turns out that I have to stop taking the Chlorella I won't take the Humaworm at all. I don't want metals to be stirred up and not have anything to bind them and move them out.

And ideas from the experts? What could cause such neck pain?

[CarlaB]

Good points from all ..... I agree about the celiac testing ... you can lead a horse to water, but you can't make him drink, you know. It's been suggested ....

I had thought about metals as being a part of the problem, but since neither the Humaworm or the VSL#3 caused discomfort, it seems like it may not be the case .... I know it's not a definitive test, but I would think he would feel worse from these products if they were moving metals/candida.

He's been out of the military for several years and this problem only started a year or two ago.

He also chews tobacco (I can't think of much that is grosser than this ....).

I figured we'd all be thinking along the same lines, but I wanted to throw it out there to see if I was missing something. Rachel, what do you think?

Ami, maybe you should try charcoal for binding toxins .... or a different brand of chlorella.

[AndreaB]

And ideas from the experts? What could cause such neck pain?

I'm not an expert but I would suspect the chlorella with stirring stuff up. Mercola's brand is supposed to be a good one so I don't think it's contamination. I have burning/itching now in my lower neck/left side shoulder blade area. I assume it's the same thing you're dealing with but not nearly as bad.

I still have my amalgams in so that could be part of it for me. Maybe you have toxins in that area still.

[AndreaB]

I had thought about metals as being a part of the problem, but since neither the Humaworm or the VSL#3 caused discomfort, it seems like it may not be the case .... I know it's not a definitive test, but I would think he would feel worse from these products if they were moving metals/candida.

He's been out of the military for several years and this problem only started a year or two ago.

I wouldn't dismiss metals entirely. Mitch has been out of the military since '92 and he's just now starting to have problems. He came up with mercury twice on the ASYRA.

Blech on the chewing tobacco.

[Rachel--24]

I have my Humaworm, but I'm not taking it until I can get this neck thing figured out. If it turns out that I have to stop taking the Chlorella I won't take the Humaworm at all. I don't want metals to be stirred up and not have anything to bind them and move them out.

And ideas from the experts? What could cause such neck pain?

Ami,

Sorry that your having the problems with your neck. There are so many possibilities...but we would only be guessing. Mercury detox is not easy at all...clearing out the organs is alot easier than getting to whats in the brain and CNS.

My *guess* is that possibly mercury is shifting in your body but you may need a chelator to get it out. Chlorella isnt gonna be able to do that...its more of a binder. It can clear alot of mercury from your gut but not the rest. Once mercury is cleared out from certain areas...the body may then begin to release some from other areas...to keep a balance.

We would only be guessing as to whats going on...which is why I'm always stressing the importance of working with knowledgeable dr.'s for mercury detox. Alot can go wrong if not done properly.

I think you've probably successfully removed mercury from recent exposure (amalgam removals) with the chelation you did....but it takes alot more to get the rest out. I dont know what your plans are but to continue clearing mercury out you would need a chelator and then the chlorella can help as a binder.

Your body will still continue to unload mercury now that it isnt burdened by the constant exposure from the amalgams. This is assuming that you still have mercury stored in your body....which is very likely in my opinion.

Also there is still the possibility of infections such as Lyme. If you have an undiagnosed infection you might be clearing enough mercury out to give that infection room to grow...but not enough mercury has been cleared out to allow your immune system the strength it needs to fight all possible pathogens.

These are things to consider....but of course it could be something entirely different causing the problems with your neck. Since you havent ruled out an intolerance to the chlorella itself...it may be a reaction that will improve when you discontinue the chlorella. I would stop taking it if the pain persists.

I hope that the neck stiffness resolves itself....I agree that the chlorella has probably stirred things up.

[Rachel--24]

I figured we'd all be thinking along the same lines, but I wanted to throw it out there to see if I was missing something. Rachel, what do you think?

My first thought was that he should get tested for Celiac....have it ruled in or out and then go from there.

Obviously when I first got sick I didnt know even a tiny fraction of what I've learned the past few years. If I *had* known all of this stuff...I would have jumped right in with getting all of the *proper* testing done....rather then spending alot of time guessing or seeing all the wrong Dr.'s for my situation.

I know alot of people tend to put certain tests off and do the "wait and see if it gets better" thing....but personally I think its important to start looking at everything before the symptoms become worse. Even if his symptoms are caused by one thing...we've all learned how each stressor puts a burden on the immune system which can ultimately lead to additional problems the longer things are left untreated.

I think he should be tested for various things...if he doesnt want to...unfortunately theres not much else you can do.

I remember my HN doctor telling me that most patients come in thinking they know the cause of their symptoms and more times then not...when they start testing...they find out things the patient had never even *thought* about. This is especially true with candida....which so many people read about and then go about self -treating....usually unsuccessfully.

I'm all for getting the tests done!! You know alot about the tests...both conventional and alternative....you could help him out...but of course he has to be willing.

He could have a bacteria infection....if that were the case I'm guessing that the Humaworm wouldnt help much.

Did he take any abx prior to the onset of "d".....any possibility of C.Diff??

What about lactose intolerance?? He would have to be willing to eliminate foods to explore a gluten intolerance or lactose intolerance (which could totally be a result of Celiac).

I agree with everyone else....you dont need to have other family members showing symptoms or having a diagnosis to suspect Celiac. Many many people do not have any known relatives with Celiac....yet they are positive for it.

I would recommend testing (including endoscopy) prior to making any diet changes.

[dlp252]

Carla,

I've had D for years now, and we still haven't figured out exactly what causes it. Most of my doctors have gone straight to the C.Diff thing, especially once they hear my antibiotic history, but none have ever found it. It's most likely bacterial for me. It's kind of funny because when I was young I always had C...now can't plug the stuff up. I don't have any suggestions for your BIL other than what has been suggested already. Does he take any supplements or medications? That's the other thing that I think helps mine along...I'm pretty sure one of my supplements makes things worse.

Kassandra,

Glad the flushing out went okay! And, I'm so glad you're keeping the LLMD appointment, and that you're mom seems more open to that idea. I'm really hoping your experience with him is as good as mine has been with mine. They tend to run a lot better tests than normal run of the mill doctors.

Those aren't ALL at Christmas in the Park are they?

Pssssst what time on the 19th?

Nope only the 19th is at CIP. I'd love to tell you what time, lol, but I'm not sure anyone knows. We've done 3 performances and 1 dress rehearsal and not ONE of them has been like any of the others. Every night he (the new head music guy) changes something. Leaves a song out, changes the order...last night he completely redid the whole first half. Completely. Sometimes we start late, sometimes on time. Anyway, what I've heard is that we are scheduled by the CIP people from 8-9. What happens then is ANYONE's guess. I only have to be there for 1 darned song, but have to stand close by because it could be put in at any point, and he may even have us do more than 1, and if he does, he probably won't tell us until 5 minutes before he wants us to sing it.

And ideas from the experts? What could cause such neck pain?

We haven't found out why mine is so bad either. I'm pretty convinced it's lyme in my case though. Metals COULD be a contributing factor as well. Mine is there pretty much all the time, no matter what I do. Yesterday it was ESPECIALLY bad though...that's why I left work early.

I've found that the heat only helps slightly and is really just temporary anyway. Sometimes I just lay on the couch with my electric heating pad on for hours...feels good while it's on there.

If I had to guess, I'd say my neck has been this way for at least the last 6 years. Physical therapy has helped to keep it down, but it doesn't go away. I got prolotherapy shots for several weeks...that helped a bit too, but again, it didn't take it away, and the pain seems back to where it was before I did the injections.

[Rachel--24]

Nope only the 19th is at CIP. I'd love to tell you what time, lol, but I'm not sure anyone knows. We've done 3 performances and 1 dress rehearsal and not ONE of them has been like any of the others.

Donna...I'm supposed to be going to Xmas in the Park with my ex...I dont know what day yet. I can assure you it wont be the 19th though. That was our anniversary...if it werent for that I'd definately wanna go that night and see you sing!

[AndreaB]

I've found that the heat only helps slightly and is really just temporary anyway. Sometimes I just lay on the couch with my electric heating pad on for hours...feels good while it's on there.

If I had to guess, I'd say my neck has been this way for at least the last 6 years. Physical therapy has helped to keep it down, but it doesn't go away. I got prolotherapy shots for several weeks...that helped a bit too, but again, it didn't take it away, and the pain seems back to where it was before I did the injections.

Sorry to hear that the neck pain has gotten so much worse again. I do hope that part of it anyway is due to the stress you've been under lately.

Donna...I'm supposed to be going to Xmas in the Park with my ex...I dont know what day yet. I can assure you it wont be the 19th though. That was our anniversary...if it werent for that I'd definately wanna go that night and see you sing!

Sounds like a call is in order this weekend........

[Rachel--24]

Well I still need to get some minerals in me. I have trace minerals but I'm holding off on them until Amy tests me...one week from today.

I called Dr. S's office and left a message with the nurses. Got a call back that he was not wanting me to continue with DMPS cuz I said I was feeling tired...a little weak and my legs have been achey off and on. I guess the message wasnt clear.

None of it has been severe or kept me from working...but I know if I dont replace minerals its gonna get much worse.

I told them Anna said I'm doing great on the DMPS...but I need to get minerals asap. I dont need to stop treatments...I need minerals.

I actually havent felt anything that would indicate DMPS or excretion/redistribution is a problem. No kidney pain, no burning skin, no depression, no brainfog, etc.

I dont have the same energy I'm used to though...a little drained. Today I started my period and I'm feeling even more drained. I felt stuck to my bed....did not even want to get up! Once I get moving I'm feeling better but I still have less energy.

I told them I just want a mineral IV...without the vitamin c and glutathione. They got back to me again yesterday and said Dr. S. wants to give me a different IV....trace minerals only.

Apparantly what I had last time (and reacted to) was a Meyers cocktail.

The Meyer's Cocktail is an intravenous vitamin and mineral protocol developed in the 1970s by a physician at Johns Hopkins University in Baltimore, Maryland.

Source

It contains magnesium chloride hexahydrate (5cc given), calcium gluconate (2.5cc), vitamin B2 (1000mcg/cc; 1cc given), vitamin B5 (100mg/cc; 1cc given), vitamin B6 (250mg/cc; 1cc given), the entire vitamin B complex (100mg/cc; 1cc given), and vitamin C (222mg/cc; 6cc given). Solutions are further customized by other doctors.

It really didnt have many minerals at all..just calcium and magnesium. They did not include B vitamins and added the glutathione.

This time I'll be getting all the trace minerals...the nurse listed them all off to me. I guess they arent usually just doing minerals but I'm hoping this works for me.

They are booked till Thursday so I have to wait until after work thursday and then Friday I have DMPS and Saturday I'll see Amy.

The IV is gonna take 2 hours though!! I think I better bring my music and some good magazines. Unfortunately, they dont allow cell phone use in the IV room.

I think I can get away with texting though.

[Rachel--24]

Sounds like a call is in order this weekend........

I guess you caught that huh.

I'm in a MUCH better place this year.

I dont even know if my feelings are the same.

[AndreaB]

They are booked till Thursday so I have to wait until after work thursday and then Friday I have DMPS and Saturday I'll see Amy.

The IV is gonna take 2 hours though!! I think I better bring my music and some good magazines. Unfortunately, they dont allow cell phone use in the IV room.

I think I can get away with texting though.

Boy, are you going to have a busy week! I'm glad you got the messages worked out.

I can't wait for updates from everyone with all the appointments this week.

I guess you caught that huh.

I'm in a MUCH better place this year.

I dont even know if my feelings are the same.

Was I supposed to miss it?

Seth plays with the phone buttons at times so if you don't get an answer start with a message. We are home for the rest of the weekend. He's turned off the ringer a few times and we don't know it til the answering machine comes on.

[CarlaB]

Thanks for all the suggestions. I agree with all of you .... I just don't think he's "there" yet.

The reason I started taking Humaworm is because they claim to be effective against klebsiella, citrobacter, and protozoa .... so that's why I thought it might help him if it was bacterial. It has herbs in it that work on bacteria ... but I think he'll need to follow it up with oregano oil and/or other stuff I was taking for the bacterial overgrowth. I don't know if I can keep his interest in it that long though. We'll see.

He had a stool test done, so I'm assuming it was C. Diff since I'm almost certain it wasn't Genova Diagnostics. I don't know what other tests his PCP ran. I'm getting my info through hubby.

Oh, hubby saw something that looked like rice today ... he's been on Humaworm for a couple weeks now. He'd be mortified that I just posted that on the web, LOL.

Donna, have FUN with the singing!!!

I always am at Church early, then I don't pay attention to everyone coming in. Well, last week my braces weren't affecting my playing too much, so I took the solo ... usually I let the piano player do it alone because of my braces. Anyway, afterward I looked around ... there was standing room only in the Church ... it seats 1500 . Good thing I didn't look around before I played.

Anyway, I emailed the nurse I bought the laser from to ask about the sleeping ... ever since I got it, I've slept with only half an Ambien. She said she's had similar results from others. She also said that there's a link on her website to Energy Essences which have a lot of natural sleep aides.

I can't wait for updates from everyone with all the appointments this week.

Ours is on Tuesday. I can't wait to tell her about the worm!

[AndreaB]

I always am at Church early, then I don't pay attention to everyone coming in. Well, last week my braces weren't affecting my playing too much, so I took the solo ... usually I let the piano player do it alone because of my braces. Anyway, afterward I looked around ... there was standing room only in the Church ... it seats 1500 . Good thing I didn't look around before I played.

Ours is on Tuesday. I can't wait to tell her about the worm!

It is a good thing you didn't look around!

I'll be waiting for your update too.

[mftnchn]

hi everyone...am reading along but not typing much as I am staying in bed due to my back problems. Apparently the Chinese massage was a little too hard...LOL. It is better this afternoon but I couldn't hardly get around this morning.

Looking forward to everyone's updates.