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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

      I don't know if I am getting sufficient Omega Threes. I read about phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    2. Scott Adams
      0

      Gluten-Free Cantonese Steamed Fish with Ginger, Scallions, and Sizzling Oil

    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue. I have eaten a supposedly high lectin diet (I say supposedly because lectin...
    4. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract. They can stimulate IgG antibody production as your blood test shows. Even beans have lectins. You've simply eaten too many lectins and irritated your digestive tract. You may want to allow your digestive tract...
    5. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg). Both are gluten free and free of other allergens. I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25". It's gluten and allergen free and made in the USA. It's a powder form of Vitamin A. ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
×
×
  • 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.