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Omg...i Might Be On To Something

Rachel--24

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CarlaB Enthusiast
CarlaB
Posted
Carla,

Do you just but a mini trampoline for rebounding? That may be a good idea.

Yes. Adam got it at Dick's .... we had a coupon for $10 from spending money there last year, then it was $10 off, so it was $20.

I was thinking of getting one, im not sure if it would do me any good cause i probably done have lyme

They're not specifically for Lyme, they're for helping your lymph system to work better. We all need that. :)

Maybe if you ever need IV's you can schedule on the same days...that would be fun! :)

You two would be asking for longer IV's if that happened! We used to meet our friends for drinks ... now we meet them for IV's, what's wrong with this picture?! :lol:

I just took an epsom salt, baking soda bath .... it took away some of the pain I was having .... this is the worst I've felt in a long time, but it's easier knowing that my herx should be over tomorrow, then I stop taking the Tindamax on Tuesday.

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dlp252 Apprentice
dlp252
Posted
Years ago when I worked in produce my friend was pumping...she would then put the bottles right there in the produce cooler. I would get all freaked out cuz her breastmilk was sitting right next to my lunch! :blink:

Okay, yeah, that MIGHT bother me too, lol. I see signs all the time on stuff in our fridge that says NOT to disturb or throw away...makes me wonder what's in there, lol. We DO have 4 other celiacs in my office, so I am NEVER tempted to look. :lol:

Last night I did 5 minutes of an exercise video and about 30 seconds on a stair master that we have at home. Last time I did the stair master, I woke up in the middle of the night with excruciating hip pain, but not this time! :P It could have also been the anti-nausea med, which is a sedative also...I may have slept through the pain. :rolleyes:;)

Woo hoo, progress! Oh, Kassandra...I think I have over 200 exercise videos! I rachel EVERYTHING. :lol::ph34r:

Kassandra about the mini trampoline, they have them at walmart this week for 20 bucks. I was thinking of getting one, im not sure if it would do me any good cause i probably done have lyme, but i thought it would be ood exercise anyway. We have a big one outside, but its too cold for that and it has 5 inches of snow on it lol.

Bouncing is good for a lot of things...anything that involves the lymph system. It keeps the lymph system in good working order.

I suppose since I spend so much time in the IV room that I'll be meeting lots of people as I continue to go. Maybe if you ever need IV's you can schedule on the same days...that would be fun! :)

...and I'm pretty sure you wouldnt let me fall asleep! :lol:

By the time I'M ready to have IVs you'll probably be done, lol. :P Although I MAY get to do a provoked challenge in February, is that just a shot, or is it an IV? If that involves spending more than 5 minutes there I'll see if I can get in on a day you're there, lol. Course if I have to pee in a cup every few minutes, that might not make for a good conversation. :P:lol:

Let's hope I don't PUT you to sleep! :lol:

AndreaB Contributor
AndreaB
Posted
You two would be asking for longer IV's if that happened! We used to meet our friends for drinks ... now we meet them for IV's, what's wrong with this picture?! :lol:

:lol::lol::lol:

dlp252 Apprentice
dlp252
Posted
You two would be asking for longer IV's if that happened! We used to meet our friends for drinks ... now we meet them for IV's, what's wrong with this picture?! :lol:

:lol: :lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
You two would be asking for longer IV's if that happened! We used to meet our friends for drinks ... now we meet them for IV's, what's wrong with this picture?! :lol:

:lol::lol:

Yeah..theres something REALLY wrong with that! <_<

HELLO....I spend my Friday's getting IV'S!! :huh:

Wanna join me for an IV?? :lol:

Oh well...we'll be meeting for IV's now...so that we can meet for drinks in the future. :lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
By the time I'M ready to have IVs you'll probably be done, lol. :P Although I MAY get to do a provoked challenge in February, is that just a shot, or is it an IV? If that involves spending more than 5 minutes there I'll see if I can get in on a day you're there, lol. Course if I have to pee in a cup every few minutes, that might not make for a good conversation. :P:lol:

I think I'll be doing IV's for awhile....I certainly HOPE you'll get started on something before I'm done IV's. I'm thinking I'll be doing them for months. ;)

DMPS is an IV...but a small one....its more of a "push". How long you're there depends on the dosage. 1cc only took about 5 minutes...3cc's takes about 20 minutes. They dont push it all in at once....she'll do like 1cc and then I have to wait 5 minutes in between...then another 1cc...another 5 minutes in between...

After DMPS I get another "push"...its the homeopathic antihistimine stuff...I have no idea how to spell it. Anyways...that goes in all at once.

For your first time they might spray some DMPS in your mouth first...then you'll have to wait awhile to make sure you're not gonna react to it. If all is well you'll get the IV.

You dont have to pee into a cup while your at the office. :P

You get the orange juggy to take home....YAY!! :lol:

You will collect urine for 6 hours after getting the DMPS.

confusedks Enthusiast
confusedks
Posted

I just got the mail and I got my test results from Dr. H's office for the C D-57.

Guess what?!??! It was 24!!!!!! My mom started to cry because she was so relieved in a strange sense. ;) I'm so happy in a weird sense because it's another test to prove that something really *is* going on!

Donna, I guess you can add my results too! :)

Does anyone know these other results mean:

Neutrophils: 69 (38-63)

Lymphs: 23 (27-47)

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dlp252 Apprentice
dlp252
Posted
You get the orange juggy to take home....YAY!! :lol:

Yay, I always knew there'd be an orange jug in my future! :lol: Just me and my jug. :P

Thanks for the info...I've actually saved it for future reference this time, lol.

dlp252 Apprentice
dlp252
Posted
I just got the mail and I got my test results from Dr. H's office for the C D-57.

Guess what?!??! It was 24!!!!!! My mom started to cry because she was so relieved in a strange sense. ;) I'm so happy in a weird sense because it's another test to prove that something really *is* going on!

Donna, I guess you can add my results too! :)

Does anyone know these other results mean:

Neutrophils: 69 (38-63)

Lymphs: 23 (27-47)

Added your number...must remember this time to add it to the spreadsheet at work, lol.

I don't know what the other stuff means...wonder if that was on my report.

Okay, just looked at my report. My Lymphs was exactly the same as yours 23 but my range was 14-46

My neutrophils was 71 (40-74)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Kassandra,

Cool that Dr. H does the CD57....I always like to see where people are at going into treatment...its interesting. So far I think CD57 counts have correlated pretty well with symptoms...going by those who have been tested in this thread.

Mine was a 78....my symptoms are mostly unrelated to Lyme. :)

My Dr. wants to see the number well over 100 before we stop treating.

I dont know about the other stuff and I dont have my results with me right now.

mftnchn Explorer
mftnchn
Posted
Ohh, the bubble thing sounds a little weird! Yes, I have two pages of instructions and a third page which is a diagram! :lol:

Kassandra, I wouldn't worry about the bubble. In the many years I have given myself shots that has happened a few times. I think it is just the quality of the skin in that place, where the muscles close hard after you remove the needle and squeeze some liquid back out.

Sherry

confusedks Enthusiast
confusedks
Posted

Sherry,

I am not worried. :) It did stain my skin though, so I have a nice pink spot on my bottom! :P

Rachel,

That's great most of your symptoms are mostly unrelated to Lyme. :)

Donna,

I looked up the other numbers. It basically means that my body is too weak to produce antibodies to infection, etc. and the other one shows it's fighting infection. But I don't remember which one is which. ;)

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I bet that you guys would know a lot about the lymphatic system.

My #2 son just had to go to his friend's funeral (poor little kid was only 8 1/2 :( In the last couple of weeks, our whole community has cried their eyes out.). THis little boy had had meningitis as an infant, but recovered. However, he continued to have fevers and swollen lymph nodes, so the doctors removed some of the lymph nodes. (This is where I raised my eyebrows so high, they go lost--how was he supposed to fight infections without those lymph nodes??)

Fast-forward 7 years, and he had a stomach-ache, sore throat, fever--and his remaining lymph nodes were severely swollen. He was rushed to the hospital, where hewas placed on IV antibiotics. But it turned out to be a viral infection. At some point, he went into seizures--I think this was after the antibiotics, but I'm not sure--so he is put in a medically-induced coma; diagnosis was encephalitis. His parents were told that it was just a matter of waiting, but that it would be a long wait.

6 weeks later, he became septic from a hospital induced bacterial infection.

I can't help thinking that he died from all the interventions. And I am scared to death to ever set foot in a hospital again, or ever bring my children to one.

Can any of you shed any light on this for me?

mftnchn Explorer
mftnchn
Posted

Hi Jin!

Thanks for the PM! I discovered the side effect to Prilosec when I stopped for one day and it improved. The pain was just like lyme pain so I thought it was that. I suspect it didn't occur often enough in the testing population to "make" the list.

The balls of my feet are better with wrapping my second toe (wrap around it toward my big toe then pull it over and down toward the small toes, wrap around the middle of my foot. Some of my pain is from damage in the ligaments and stuff apparently causing my second toe to migrate toward my big toe. I also use an orthotic that has a cut out area under toes 2-4 in the ball of the foot. So it puts more pressure under the big toe and little toe and reduces pressure in the part that hurts. This is still not adequate to stop the pain but helps.

I don't have the pain standing like you describe. Only with walking for too long without the above support, or walking quite a lot. I also have pains in the foot that "move around" and sometimes flare at night in bed. Can be sharp enough to wake me up.

Sherry

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel,

That's great most of your symptoms are mostly unrelated to Lyme. :)

Yeah...but I guess its not that great considering I'm sick anyways! :P

Still...I didnt want to have a low CD57 on top of everything else....it would have made recovery much more challenging.

I can't help thinking that he died from all the interventions. And I am scared to death to ever set foot in a hospital again, or ever bring my children to one.

Can any of you shed any light on this for me?

Alison,

Thats really sad news. :(

To me it sounds like he had a chronic hidden infection...maybe Lyme...maybe something else. The fact that he had chronic swollen lymph nodes indicates infection.

What kind of idiot Dr.'s would remove the lymph nodes instead of trying to find out why they were swollen??!! Sheeesh...it sounds like his Dr.'s did all the wrong things from the start. :(

confusedks Enthusiast
confusedks
Posted

Fiddle Faddle,

I don't have any idea what may have caused any of that, but I just wanted to say how sorry I am for your son and everyone who was affected by the loss of this little boy. That is just so sad. :( ((((((hugs))))))

Rachel,

Yes, it does still suck that you're sick, BUT you're right, a low CD57 on top of it would have sucked even more!

CarlaB Enthusiast
CarlaB
Posted
What kind of idiot Dr.'s would remove the lymph nodes instead of trying to find out why they were swollen??!! Sheeesh...it sounds like his Dr.'s did all the wrong things from the start. :(

Yeah, but that's just what they do .... tonsils, spleen ....

I agree, all the wrong things .... but standard things. It's just strange that the medical profession thinks that the way to get the lymphatic system to stop "causing" problems is just to remove it .... it doesn't cause the problems, it's stressed because it's trying to remove the problem.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Alison...my lymph nodes have been swollen for 5 years now and the whole lymphatic system having drainage problems from all the toxins. No way would taking the lymph nodes out help matters!! I never even heard of such a thing. :huh:

Is that a common procedure?? :unsure:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Yeah, but that's just what they do .... tonsils, spleen ....

I agree, all the wrong things .... but standard things. It's just strange that the medical profession thinks that the way to get the lymphatic system to stop "causing" problems is just to remove it .... it doesn't cause the problems, it's stressed because it's trying to remove the problem.

Ok...yeah...I guess I've been focused on healing by getting to the root cause. When I hear stuff about taking out organs and such...it just seems WRONG to me!! :(

CarlaB Enthusiast
CarlaB
Posted
Ok...yeah...I guess I've been focused on healing by getting to the root cause. When I hear stuff about taking out organs and such...it just seems WRONG to me!! :(

Getting to the root cause is NOT what modern medicine is all about .... they consider you fixed (not cured) if they are treating the symptoms.

dlp252 Apprentice
dlp252
Posted
Cool that Dr. H does the CD57....I always like to see where people are at going into treatment...its interesting. So far I think CD57 counts have correlated pretty well with symptoms...going by those who have been tested in this thread.

Mine was a 78....my symptoms are mostly unrelated to Lyme. :)

My Dr. wants to see the number well over 100 before we stop treating.

Yeah, mine was 84, and I too think it correlates well with how each of us was with symptoms. I wasn't as sick as most were here. Even though Lyme is a major stressor on my body, I believe that a lot of my symptoms are caused by mold and metals.

6 weeks later, he became septic from a hospital induced bacterial infection.

I can't help thinking that he died from all the interventions. And I am scared to death to ever set foot in a hospital again, or ever bring my children to one.

Can any of you shed any light on this for me?

I'm so sorry...that is so very sad. I don't know as much about the lymph system as I should, but my neck nodes haved been swollen for several years up until just recently. On my last regular physical last year, my lymphocytes were low, and all the ART testing I've had done has shown infections, both viral and bacterial. All my stool testing (recently) has also shown bacterial infections. I think we're finally getting a handle on the infections by supplementing and I've been doing a lot more bouncing on the rebounder. My PT also gives me massages in that area to help drainage.

I am just really sad that the answer for most doctors always seems to be to take stuff out rather than trying to find out why.

miamia Rookie
miamia
Posted
Donna,

About the IV room being busy when you were there.....yeah...it was...I love it when theres alot of "action" going on. :lol:

Thats why it sucked that I couldnt stay awake! :angry:

I've actually FINALLY gotten the opportunity to talk to some people! :D

I usually see the same people who are probably on similar schedules for their IV's. I saw a new girl the last couple times. Her mom talked to me a couple weeks ago...and this time (when I finally managed to keep my eyes open) the girl made some conversation with me.

I'm happy that I'm getting to meet some people. :)

That girl doesnt see Dr. S...she see's Dr. G...I assumed for Lyme but she said no. She asked about my IV's...what I was getting treated for...stuff like that. She has chemical sensitivities too.

I suppose since I spend so much time in the IV room that I'll be meeting lots of people as I continue to go. Maybe if you ever need IV's you can schedule on the same days...that would be fun! :)

...and I'm pretty sure you wouldnt let me fall asleep! :lol:

Rachel-

I have met some really cool people in my iv room. Some have lyme some metals its actually been a good way to gain more info.

Carla-

Thanks for the feed back on the levaquin. What dose did you take of it?

Jin thanks for your pm you are such a sweetheart.

CarlaB Enthusiast
CarlaB
Posted

Miamia, I was taking one pill a day ... I think it was 500 mg.

Jin, yes, thank you. We'll find out more about how much longer Chloe has for treatment this week when we go to NY.

confused Community Regular
confused
Posted

Is there anything i can take, i got molded by pistachios, i didnt remember that i cant have them and hubby bought some and i ate a few, ok more then a few. Right after i got so sick and my stomach is in major bloat and pain and im hot and tired. I just feel like utterly crap. I cant take anything that will cause problems for my stool test tho cause i have to still have one more sample for my stool test so any idea that wont affect that are welcomed

paula

AndreaB Contributor
AndreaB
Posted

Kassandra,

That C-D test definately shows your body is real burdened right now. Mia's was that low too.

Donna.......I always like updates......you know that right? :)

Alison,

I'm so sad for that family. Seems like the hospital and doctors did everything wrong from the get go. :(

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      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?

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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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