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

The Lyme Disease Thread

CarlaB

Recommended Posts

mftnchn Explorer
mftnchn
Posted

So very glad you got your diagnosis. Welcome to the lymie group here, LOL!

Recovery is a tough road, keep posting if you have any questions.

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

Celiac.com Sponsor (A8-M):


  • Replies 886
  • Created
  • Last Reply
CarlaB Enthusiast
CarlaB
Posted
  • Author

Welcome! And congratulations on a diagnosis!! This should help your arthritis, too.

Be sure that you are treated until your symptoms resolve. I highly recommend Dr. B's guidelines for diagnosis and treatment found at www.ilads.org

jerseyangel Proficient
jerseyangel
Posted

Hi all :D

I think I was bitten by a tick today.....I saw a black speck on my ankle, was able to scratch it off with my thumbnail, but it left a tiny red spot. About the size of a pinprick.

I was in my back yard about 4-5 hours before.....there are lots of deer that roam around out here which is why I'm concerned.

Does this sound like a tick bite? I cleaned the spot with peroxide and it's barely noticeable now. Is it just a matter of wait and see?

CarlaB Enthusiast
CarlaB
Posted
  • Author

Oh, Patti, I'm sorry, that's terrible!

My doctor treats prophylactically for six weeks. His opinion is that it's less dangerous to take unnecessary abx than to risk chronic Lyme.

If you don't treat, you for sure want to watch for the red spot to grow at all or for any flu-like symptoms.

Three good websites - lymenet (.org), www.canlyme.com, and www.ilads.org (there are diagnostic and treatment guidelines at the third one).

jerseyangel Proficient
jerseyangel
Posted

Carla--thanks for getting back to me so fast! This stuff makes me nervous.....

I will keep a sharp eye on it--like I said, it's no more than a slight pinprick right now. It's actually hard to even see if you don't know it's there.

I may call my doctor tomorrow anyway. I'll keep you posted :)

CarlaB Enthusiast
CarlaB
Posted
  • Author

Well ..... your doctor will most likely tell you how Lyme is no big deal, watch for symptoms .... it's the rare doctor who understands how bad Lyme can be. Also, most doctors will tell you the tick has to be attached for a couple days even though that's not true.

Hopefully, it will end up being nothing. :)

jerseyangel Proficient
jerseyangel
Posted

Yeah, that's about what I thought. This is a new-ish doctor to me, since we've only lived here less than a year. I guess I'll be playing this thing by ear. :huh:

I may be back :lol:

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted
  • Author
I may be back :lol:

Not that I don't love hearing from you, but I hope you have no need to be back to this thread. :)

jerseyangel Proficient
jerseyangel
Posted
Not that I don't love hearing from you, but I hope you have no need to be back to this thread. :)

:D

Mtndog Collaborator
Mtndog
Posted
Not that I don't love hearing from you, but I hope you have no need to be back to this thread. :)

Me too! I hope you don't have to come back :( much as I :wub: you.

It's been too long since I've been here- I, unfortunately, belong!

Carla- Are you feeling better? I'm 2 weeks into my 12 week round of IV doxy. It's making me very sleepy but helping the pain tremendously!!!!!!!

CarlaB Enthusiast
CarlaB
Posted
  • Author

Bev, my bed had mold (did you see that thread?). I'm very painfully detoxing it right now. :( I was doing really, really well Lyme-wise up till then.

I'm glad your pain is diminishing!

mftnchn Explorer
mftnchn
Posted

Patti, sure hope it isn't lyme! Too bad you didn't have the tick to send for testing.

Bev, so glad you are getting some pain relief. I recently realized how much pain relief I get from Zithromax. Was off 2 months and had pain the whole time, pretty mild but gradually worsening. Got back on, herxed, and have felt better since. I'm back off now for a two week cycle.

jerseyangel Proficient
jerseyangel
Posted
Patti, sure hope it isn't lyme!

Thanks Sherry :) I'm cautiously optomistic this morning, as absolutely nothing has happened at the site. I can't even see the bite spot. Of course, I'll be on the lookout for anything out of the ordinary ;)

CarlaB Enthusiast
CarlaB
Posted
  • Author

Sherry, I get unbelievable pain ON Zithromax! I get off it and feel fine! Funny how it's different for each of us. My doc thinks my pain on Zith is from a cytokine reaction.

mftnchn Explorer
mftnchn
Posted

Isn't it strange? and Zith is the other abx that tests well for me on ART, too.

I think perhaps some of the differences are that maybe I have an Asian strain of the bugs.

CarlaB Enthusiast
CarlaB
Posted
  • Author

My doctor thought that I had a lot of the bugs hiding out intracellularly, so perhaps that's why the strong reaction to the zith. With my recent mold detox experience, I think there were just some odd complicating factors. :) Lots with the US strains do well on zith .... it was just too harsh for me. I did well on lower doses.

  • 2 weeks later...
mftnchn Explorer
mftnchn
Posted

Zith is pretty much THE med for me, I don't know why. Seems like after being on it so long it would lose its effectiveness.

My current thought is that my digestive problems that were pretty much unknown in the first years of treatment have undermined the effectiveness of lyme treatment. Was just reading from the Gut and Psychology--well excerpts from the book--about how 85% of the immune system is gut related.

Question again about babesia sweats. Does anyone have chills just before the sweats? Do you notice a time of the night where it is more active?

mslee Apprentice
mslee
Posted

Oh My :o

In the midst of my exhaustion I have stumbled onto this thread.

I have almost every symptom listed on that first page.

Surely this is not something else my Rheumatologist has over looked. Will do more research, is this something easy to overlook???

Thank you guys for so much good info on here!

CarlaB Enthusiast
CarlaB
Posted
  • Author

Welcome mslee! Yes, there's a political battle within the medical field regarding Lyme .. lots of info in the thread. It's easily overlooked, then when you bring it up they laugh at you. :(

Feel free to ask any questions you might have and one of us will try to answer. :)

mftnchn Explorer
mftnchn
Posted

Welcome mslee! Glad you have found us.

It's easily overlooked, then when you bring it up they laugh at you. :(

Exactly what happened with my rheumie...he was "known" for thoroughness of diagnosis, and was the recognized expert on lyme at the local med school. :ph34r:

The only thing he said that was positive about my lyme diagnosis (by another doctor) was that I was having a clear herx response to the bicillin shots. I felt really disrespected even though his manner wasn't horrible. I was angry a year later when it was clear that I had lyme and had a hugely positive response to abx. This rheumie had seen me early on after my symptoms started, then again many years later when I was so bad I started looking for more answers for the chronic pain.

It's incredibly important to find a good LLMD.

mftnchn Explorer
mftnchn
Posted

Question about night sweats with babesia: do you have chills prior to the hot flash/sweats? Secondly, does sleeping medication help you sleep through these?

The spells are really interrupting sleep for me right now.

CarlaB Enthusiast
CarlaB
Posted
  • Author

Sherry, I would wake up sweaty, so I don't know whether I had chills first or not. I know I would dry off and get rid of some covers, then I'd wake up later freezing.

Sleep meds never help me sleep through anything, LOL. By the time my doctor got me on Lyrica to help with sleep, my sweats were already gone.

Hang in there, those sweats are horrible!!

mftnchn Explorer
mftnchn
Posted

I don't sweat very much, it is the chills and extreme hot sensation (where I can't stand wearing a nightgown, touching the bed or anything else) and these keep alternating--that is disturbing sleep. I read in one place that this could describe menopause hot flashes too. I sometimes chill first, then hot flash, with a light sweat coating. Then sometimes a little chill from being wet but this is usually not too bad.

CarlaB Enthusiast
CarlaB
Posted
  • Author

Yes, that is different from what I had with babesia. I would wake up absolutely drenched with sweat. Even my hair would be wet.

I had hot flashes, too. I would think it was hot when no one else would.

mftnchn Explorer
mftnchn
Posted

Hmm. Well I am leaning toward a hormonal cause for this right now. It would fit other symptoms (last period in June).

Except that off the Zith I clearly have various symptoms coming up, and a fast response. And I think the hot flashes have been worse while off Zith.

Guess I'll wait and see if this cycles again with my med switch.

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. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.