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Omg...i Might Be On To Something

Rachel--24

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confusedks Enthusiast
confusedks
Posted

I hope they can figure it out too! The problem is that the LLMD's office manager doesn't pick up the phone and only returns phone calls at about 4.30 in the afternoon.

We are also trying to get the insurance to cover more iron IV's. The on call hematologist is going to call us (since mine is out of town until Monday...of course!) and tell us whether we need more Iron IV's or if that won't work. <_<

Kassandra

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dlp252 Apprentice
dlp252
Posted
The Lyme DRAMA has escalated! We were using that Dr. who turns out to be a wellness director, and we used them to have Igenex send labs to them. Well, it turns out since he is not a Dr. and the Dr. in the office wasn't there on the day that we had the blood drawn, Igenex won't run the bloodwork without the MD's signature. So, we are trying to get the LLMD to sign for it, but I really don't think it's going to get there before next Friday. (I hope this makes sense, I am really out of it today.)

I have a question for anyone and everyone, first, chocolate has caffeine in it...right? Would that be the reason I may have been sleeping TERRIBLY the past 2 days? I think these are the only days I have eaten chocolate.

Egads!! The drama! :o Gosh I hope there is something the LLMD's office can do. You know, I haven't slept well either since I got home (except for my first night home), and I'll bet it's because I've been eating a ton of chocolate.

I'm pretty sure that I'll be eating ALL of them someday. :D

I'm sure Rachel and I will be duking it out in the Rinne Bar aisle to see who can rachel the most.

Thanks Kassandra and Rachel for reminding me that my chocolate consumption may have something to do with my not sleeping well. :P:lol: Seriously, it is so obvious but I just didn't want to see it.

Oh ditto!

confusedks Enthusiast
confusedks
Posted

Donna,

Hopefully the LLMD's office can do something.

Now it is looking like we may not be able to go though. My hematologists office called back and the on-call Dr. said that I will need iron IV's...STAT! Since he is not my hematologist, he told me to go in on monday for an appt. with the hematologist. If I have to have iron IV's, we are going to get a PICC line because I refuse to be poked and proded every day for iron IV's. Even the nurses who started the IV's when I used to get them, told me if I ever had to have them done again, they wouldn't do them without a PICC line or Central line. So, monday we are off to the Hematologist to see when we will get more iron IV's.

This has been fun!!!! LOL!! :rolleyes: It's no wonder I am so tired...lol! I am not able to rest for a split second with all this "Urgent" stuff going on.

Thanks everyone for listening to my long posts.

Kassandra

AndreaB Contributor
AndreaB
Posted
This has been fun!!!! LOL!! :rolleyes: It's no wonder I am so tired...lol! I am not able to rest for a split second with all this "Urgent" stuff going on.

Thanks everyone for listening to my long posts.

What long posts? :huh: Your posts haven't been long.

I was so looking forward to your appointment next week. :( You do need those iron IV's though. Would they be able to get you in before the end of the month if you have to cancel the 16th?

confusedks Enthusiast
confusedks
Posted
What long posts? huh.gif Your posts haven't been long.

I was so looking forward to your appointment next week. sad.gif You do need those iron IV's though. Would they be able to get you in before the end of the month if you have to cancel the 16th?

I will see if they can get me in before the end of the month. We also have an appt. with a GI for the 19th. Also, the Hematologist is on the 12th AND another LLMD/naturopath on the 27th. We are trying to figure out when we can see the LLMD. I am more interested in the LLMD we have the appt. with on the 16th than the Naturopath. But, through all of this, I DO need iron.

What starts to happen is once the ferritin is so low, the hemoglobin isn't able to "hold on" anymore. So, we wouldn't doubt that my ferritin is even lower than when it was about 2 weeks ago, and probably the same for my hemoglobin. The on call Dr. was really worried because he assumed that I had my period through all of this. But I have only had it 2x in about 4-5 months and it was really light and short, so that's not the cause of the low iron. :huh: He said that if I get my period over the weekend, I need to go to the ER...HAHAHH! I don't think we'll be doing that! My period was supposed to be here about 2 weeks ago...but no surprise it's not! I guess my body doesn't have enough blood to lose! LoL!

Kassandra

mftnchn Explorer
mftnchn
Posted

Good grief! Did you tell him what happened the last time the hemotologist told you to go to the ER?

mftnchn Explorer
mftnchn
Posted

Hey...would I get relief from the pain in my upper back and shoulders with an epsom salt foot bath? (No tub until next Tuesday evening.)

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AndreaB Contributor
AndreaB
Posted
I will see if they can get me in before the end of the month. We also have an appt. with a GI for the 19th. Also, the Hematologist is on the 12th AND another LLMD/naturopath on the 27th. We are trying to figure out when we can see the LLMD. I am more interested in the LLMD we have the appt. with on the 16th than the Naturopath. But, through all of this, I DO need iron.

I know if you start the IV's Monday that you won't be able to go on the 16th.......would that interfere with the GI on the 19? I assume your IV can be worked around that. Would you still go on the 16th if the IV's don't start this week (I'd be very surprised if they didn't though)?

As far as your cycle, not surprising, considering the state of your iron and the state of your health right now.

AndreaB Contributor
AndreaB
Posted
Hey...would I get relief from the pain in my upper back and shoulders with an epsom salt foot bath? (No tub until next Tuesday evening.)

Well I don't know about that far up being helped but I assume it's possible since everything meets in the feet, as far as meridians. Couldn't hurt.

confusedks Enthusiast
confusedks
Posted

We will tell the Hematologist when we see him. I'm sure he will be outraged, as were we! :o My mom is going to write a letter to the Medical Board of America (or something like that...) telling them about the negligence on the part of the ER Dr. and she will CC it to the chief of staff at the Hospital. We will also not pay the bill she sends us because she was so wrong in what she said! :angry:

On a VERY good note, I don't know if anyone knows that we have been trying to get money together for online school. We found this organization that has been helping us along the way (they help families of chronically ill children...me). They called us today and told us they will pay for the first year of online school!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

YAY!!!! <MAJOR happy dance!> So, in the face of all this yucky illness, there is SOME good! :D

If we don't have IV iron this coming week we will go to the LLMD. And no matter what, we will work around the GI appt. because the hematologist thinks I am bleeding internally. I have no idea, but they want us to run tests (colon, endo, barium) to rule anything out.

I am pretty sure they will do iron IV's as soon as I can get a PICC line. They also have to order the iron in because they usually administer Chemo, not Iron.

Kassandra

AndreaB Contributor
AndreaB
Posted
On a VERY good note, I don't know if anyone knows that we have been trying to get money together for online school. We found this organization that has been helping us along the way (they help families of chronically ill children...me). They called us today and told us they will pay for the first year of online school!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

YAY!!!! <MAJOR happy dance!> So, in the face of all this yucky illness, there is SOME good! :D

YAY!!!! :D :D :D

I'll be waiting for news on the reception of the letter from your mom. That person should be put on probation or something!

Also be waiting for news on the IV, PICC and when they'll start. :)

Plus how the appointment goes on the 19th.....and results. It's good to get that stuff ruled in or out.....just like the lyme. I would be very surprised if you didn't have lyme thought since you had a bulls-eye. Whether the tests show positive or not, I think you have it and I will also be waiting to see what the LLMD says once you get in. I wonder if it will take awhile to get the iron in if they have to order it?

confusedks Enthusiast
confusedks
Posted

Last time it took them about 2 days to get the Iron. The Dr. ordered it on a MAJOR emergency basis as it was urgent. I was actually the first person who they ever gave Iron to because it is usually a hospital outpatient thing because people have had fatal reactions. The poor nurse who administered it was SO nervous the first time they gave it to me. LOL! She said she called ALL of her nurse friends the night before!! :lol:

They give IV benadryl before they give the iron and it used to make me SO loopy!!! LOL! The Dr once came to talk to me and I was totally out of it...he was like "I think I'll come back later..." lol :D

Another happy note, I just talked to my grandma who is VERY anti anything semi-alternative!!! Like....WOAH!! She was dx'd with Celiac and won't follow the gluten-free diet because she says the way she feels has NOTHING to do with what she eats!!! (Just to give you an idea of the kind of person I am dealing with) and I just talked to her and I told her about Lyme and she was amazingly supportive. Also, online school, she said she thought it was a good idea (she is one who thinks I need to be a lawyer or a Dr....lol). So, she usually puts a ton of pressure on me, but was really nice about everything. She actually said, "it doesn't matter what the dx is as long as they can treat it!!!"

Kassandra

mftnchn Explorer
mftnchn
Posted

Kassandra, so much is happening right now in spite of the difficulties along the way. It's great your grandmother could be sort of on board. We are all hoping for some breakthroughs for you soon.

YAY on the online school, and I am looking forward to more updates as these appointments happen.

AndreaB Contributor
AndreaB
Posted
So, she usually puts a ton of pressure on me, but was really nice about everything. She actually said, "it doesn't matter what the dx is as long as they can treat it!!!"

That's so great that your grandma is being supportive! My mom doesn't agree with much of what we do and is always bringing articles over for me to read from doctors (newspaper/magazine). At least she's heard of meridians in the body and didn't question the treatments we had done. The big thing with her is vaccines. My children have had enough problems with those! :angry:

confusedks Enthusiast
confusedks
Posted

That actually brings up a good point. I have a question for anyone about vaccines actually. I am supposed to have another HPV shot, it was actually supposed to happen in October, but we didn't get around to it. Is that really a BAD thing? I worry about not using our technology to prevent something such as cervical cancer, but I do realize that there are risks about toxicity too. Any opinions?

Kassandra

AndreaB Contributor
AndreaB
Posted
That actually brings up a good point. I have a question for anyone about vaccines actually. I am supposed to have another HPV shot, it was actually supposed to happen in October, but we didn't get around to it. Is that really a BAD thing? I worry about not using our technology to prevent something such as cervical cancer, but I do realize that there are risks about toxicity too. Any opinions?

DO NOT GET THAT SHOT!!!!!!

There are sooooooooo many bad side effects to it. Young girls have died or been permantly disabled due to this shot. I will be glad to pull up the NVIC report and get the specifics. Dr. Mercola has also written about this. Plus it only covers certain strains of the cancer. There are ways of preventing (or catching it early enough to be treated) cervical cancer, one of which is paps/exams regularly.....at least every two years.

All shots carry the risk of toxicity.....especially for one already chronically ill. Mercury may not be in them, but aluminum still is, along with a host of other things that don't belong in the body. They really messed the vaccines up with so many strong adjuvants to try to get an immune response to the few that wouldn't mount one. Now the ones who are sensitive and mounted a response with just the vaccine and preservatives are being overloaded.

confusedks Enthusiast
confusedks
Posted

Uh oh! Okay. I will talk to my mom about this. I agree, but my Dr. was so good at convincing me that it was a good idea. <_< I guess that is up there with telling people Lyme only needs 3 weeks of abx!

Kassandra

AndreaB Contributor
AndreaB
Posted
Uh oh! Okay. I will talk to my mom about this. I agree, but my Dr. was so good at convincing me that it was a good idea. <_< I guess that is up there with telling people Lyme only needs 3 weeks of abx!

Yep.

If your mom wants to see some stats just go to Mercola's website and search under HPV or Gardasil. There is also a video clip to watch about a mother and her daughter who got the shot and was disabled by it. Mercola didn't do the video.....some radio show host or tv host did.

mftnchn Explorer
mftnchn
Posted

Okay, I tried the epsom salts foot soak, and it did help clear some of the fogginess I think. I used a pail, so could get about half my calves in the soak as well.

mftnchn Explorer
mftnchn
Posted

Kassandra, you know, it does make sense the the iron IV, especially with a PICC line would be done as an outpatient procedure at the hospital where there is access to the resources needed if there is a problem. However, what doesn't make sense is that you really need this and arrangements are not being made to do this. All it should have taken was your hematologist's order, it seems to me, and your insurance person also knows. I would think a call to the responsible party that you will be holding them responsible for what the delay does to your health condition might be in order. Your hematologist might be away, but certainly could be reached I am sure by his partners or the hospital.

mftnchn Explorer
mftnchn
Posted

Sorry Andrea, lyme brain forgetfulness...when is your phone consult with your doctor?

miamia Rookie
miamia
Posted

Rinne-

sounds like everything is going great for you. I am so happy to hear about the sucess of Rinne bars. How have you been feeling?

Rachel-

I was thinking about you this morning - hasen't it been 2 weeks since the metals test? have you heard anything?

I had a really productive appointment with the women who does the muscle testing for me. My main organs under stress have changed since the beginging my stomach and my liver are what mainly need support right now. The stuff i was taking for my pancreas seems to have really helped because before that was my weakest organ and now it is testing alright.

My stomach is going to be our main focus right now so we worked out a supplement plan and it is not overwhelming. and i feel safe with all of them.

I got some tests back and it looks as though i really need some more protein . I finally found a protein powder i may be able to take it is ia rice protein powder but it is the 1st one i have ever seen that is formulated from white rice as opposed to brown- I can eat white rice but not brown kills me, so i am really hoping i will be able to tolerate it . I am going to go really slowly with it though!! I had to order it so i did not have it yet when i met with the women who does my testing but i might see her again this week and i will bring it with me. This way she can test me for it and if i test ok i am going to have her dose me for it.

Carla-

the humaworm looks like it has a alot of good stuff in it unfortuanatly it has a few ingredients that are too harsh for me the cascara s, and psylium husk are 2 things i stay away from. I am really interested in it though becasue down the line it might be something i would try. Keep me posted on how it works for you.

Hello to everyone else!!!!

jerseyangel Proficient
jerseyangel
Posted

Kassandra,

This is totally my opinion, but if I had a daughter, I would not have her get the HPV shots.

I think that understanding cervical cancer, and having regular Pap Smears is key. As Andrea pointed out, the shots don't even cover all of the possible strains of the virus, so you would still need the screenings.

I have always gotten a Pap every year--I had a hysterectomy in January and choose to retain my cervix, as thankfully my Paps have always been clear. Cervical cancer is very slow-growing, so as long as you are aware and have the screenings, you can still prevent any suspicious changes from becoming cancerous.

It is more prevelant in younger women, so be aware of that. At my age, my doctor told me that my chances of getting it were only slightly higher than his!

I just think this is a much better approach than a relitively new vaccine that once you take it, it's in your system forever--and it's so new that we really don't know how people will do with it long-term.

Again, it's very important to get those Paps ;)

CarlaB Enthusiast
CarlaB
Posted

I'm on my phone for this so i'll be short.

Mia Humaworm makes every batch to order and will leave out whatever you cant have.

Kass., i would be more suspicious of hemolytic anemia than internal bleeding.

Sherry, glad the foot bath worked! There's a nice tub here at the hotel, separate from the shower so I was thinking about looking for some e salt myself.

CarlaB Enthusiast
CarlaB
Posted

ps ditto on HPV virus opinions. Check out www.909shot.com. Might be . Org

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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