Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something

Rachel--24

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
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)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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. :(

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    2. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    3. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    4. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

    5. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      2

      Gut Healing After a Celiac Diagnosis: What Science Says About Recovery Time (+Video)

      Excellent article!! I shared with my family, so they would understand!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,923
    • Most Online (within 30 mins)
      7,748
    cmckurtz
    Newest Member
    cmckurtz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.