The Lyme Disease Thread

[mftnchn]

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.

[CarlaB]

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]

Hi all

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]

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]

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]

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]

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.

I may be back

[CarlaB]

I may be back

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

[jerseyangel]

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

[Mtndog]

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 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]

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]

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]

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]

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]

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]

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.

[mftnchn]

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]

Oh My

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]

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]

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.

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]

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]

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]

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]

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]

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.