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Lingering Lyme Symptoms...or something else?!

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Posted 7/18/2018 6:19 PM (GMT -6)
Hello,
First time poster here! I'm a 31yo female who noticed a small bullseye rash on my elbow 7 weeks ago. I went to urgent care that day and they gave me 3 weeks of doxy (200mg/day). I'd been feeling a little sick the week before so that + the rash pretty much ensured it was Lyme.

Felt OK during my 3 week course, but now since I've been off the doxy I've been feeling weird sensations in my lower legs. Started as tightness / pulling in the shin and tingling. Now has progressed to burning pain on the outside of my calf and occasional twinges of electrical sensation behind the knee in one leg. Isn't debilitating yet, but seems to be getting worse. I also have chronic facial pain (UGH) likely due to trigger points in my SCM, which has been really bad during these last few weeks. I'm very active but this does not feel like a typical sports injury.

Went to my doctor last week, 6 weeks after Lyme bullseye and got Immunoblot test. All measures (IgG and IgM) showed NEGATIVE for Lyme! However my white blood cell count was elevated (13,000), which means I was / am probably fighting something. They put me on another 3 weeks of doxy to be "safe".

I'm new here, but can you guys help me? Should I see a neurologist for nerve pain, or is this a normal lyme response that will go away? Should I push for another Lyme test? My great-grandmother had MS so part of me is also paranoid that maybe it's that instead... Any help / advice / reassurance you can give me would be incredible.

Thanks so much. Been a lurker for a while and you guys all seem very knowledgable and helpful.
Brianna
Posted 7/18/2018 8:43 PM (GMT -6)
The burning and pain in the shins could be bartonella.
Posted 7/18/2018 9:28 PM (GMT -6)
Hi Brianna - welcome!


i wouldn't go see a Neurologist (unless he/she happens to be lyme literate...)

You want to find a LLMD and get more treatment. This is still an early infection and your best chance of knocking this out is now...a.s.a.p.
You do not want this to be a chronic infection...

Your nerve pain should go away with treatment.

We can help you find a LLMD - start a new thread: "Looking for LLMD in/near____" and fill in the blank with your location.

We do encourage our new members to read through the information contained in the thread: "New to Lyme?..Start Here!" It's packed full of useful information.

If you do want to do another test, a good lab is Igenex. The Lyme WB IgM and IgG is the best bang for your buck at $250 for both. Call Igenex, they'll send you a test kit. Your Dr. signs the lab req, get the blood drawn and send to Igenex via Fedex (on a Monday or Tuesday)
Posted 7/19/2018 1:26 PM (GMT -6)
Thank you! I found a Lyme treatment center near my house and they were able to get me in to see NP tomorrow. It's out-of-network, but worth it for my health! I dont want to wait another 2 weeks to see Infectious Disease specialist...

I'll ask about Bartonella. I've also purchased some of the herbs I read about here.
Thanks again for your help. Fingers crossed for successful treatment soon! <8 weeks since bullseye is still early, right?
Posted 7/19/2018 2:05 PM (GMT -6)

bmoniq7 said...
Thank you! I found a Lyme treatment center near my house and they were able to get me in to see NP tomorrow. It's out-of-network, but worth it for my health! I dont want to wait another 2 weeks to see Infectious Disease specialist...

I'll ask about Bartonella. I've also purchased some of the herbs I read about here.
Thanks again for your help. Fingers crossed for successful treatment soon! <8 weeks since bullseye is still early, right?

Yes, it IS still early..... and you want to treat a.s.a.p.
Posted 7/19/2018 5:45 PM (GMT -6)

bmoniq7 said...
Thank you! I found a Lyme treatment center near my house and they were able to get me in to see NP tomorrow. It's out-of-network, but worth it for my health! I dont want to wait another 2 weeks to see Infectious Disease specialist...

I'll ask about Bartonella. I've also purchased some of the herbs I read about here.
Thanks again for your help. Fingers crossed for successful treatment soon! <8 weeks since bullseye is still early, right?

That's fantastic!! Praying you have a speedy recovery.

If this treatment center doc downplays the possibility of coinfections like bartonella, provides limited treatment and tells you that any remaining symptoms are PTLDS (post treatment Lyme disease syndrome) or it's all in your head, RUN to an LLMD who uses ILADS guidelines and get references from members to find a good one.

Yes, it's early. Treat all infections fully. Ask all the questions you need to. This is a knowledgable and supportive forum.
Posted 7/19/2018 6:35 PM (GMT -6)
When it’s early (a couple months or less) sometimes all coinfections aren’t treated - and LLMD will prescribe just one or two abx and see if symptoms do resolve.

“Apparently, in early infections, before extensive damage to the immune system has occurred, if the germ load of the co-infectors is low, and the Lyme is treated, many of the other tick- transmitted microbes can be contained and eliminated by the immune system. However, in the chronic patient, because of the inhibited defenses, the individual components of the co-infection are now active enough so that they too add to features of the illness and must be treated. In addition, many latent infections which may have pre-dated the tick bite, for example herpes viruses, can reactivate, thus adding to the illness.”

(From Lyme Disease Treatment Guidelines (Burrrascano )
Posted 7/20/2018 3:01 PM (GMT -6)
Quick update - Saw an NP at the lyme treatment center and I think we have a good attack plan. She thinks it’s either Lyme coinfection (likely Bartonella) or a Herx reaction to that second course of antibiotics I’d received. I can deal with Herx - feels almost like a good thing. Bartonella is a bit scarier... hard not to know for sure.

In case of either scenario, she gave me a bunch of herbal / supplement recommendations and an Rx for Rifampin to add to my Doxy Rx. This should hold me to my appointment with infectious disease specialist in two weeks. Probably just gonna do blood tests there since higher chance insurance will cover there.

So now, treatment plan is:
Rx: Doxycycline (100mg 2x a day) and Rifampin (300mg 1x/day)
Herbal Recs: Probiotics, cod liver Fish Oil, activated charcoal, milk thistle, b12 liquid and to continue my turmeric and Ritual multivitamin

I’d also purchased this “Tick Recovery” mixture from Amazon, arriving tomorrow, which she said looks good: https://www.amazon.com/Tick-Recovery-Herbal-Powder-Formula/dp/B01LYG4MMR

Whew! Here’s to getting my body healthy!
Any other advice / input welcomed!

P.s. if anyone is in the Boston area, I’d recommend the Lyme and Pans treatment center in Cohasset! Very thorough, holistic approach and comfortable setting. Expensive though since out-of-network (you deal either your insurance). But worth looking into!
Posted 7/21/2018 3:49 PM (GMT -6)
One more question...as I’m being treated assuming I have Bartonella, is there a way to tell when I’m herximg (aka RXs are working) vs. just feeling more of BART symptoms? Do they just just more aggressive during a Herx? Or does something else change?

I’m getting married in six weeks and would give anything for this all to be gone by then! Thank you guys.
Posted 7/21/2018 10:38 PM (GMT -6)

bmoniq7 said...
One more question...as I’m being treated assuming I have Bartonella, is there a way to tell when I’m herximg (aka RXs are working) vs. just feeling more of BART symptoms? Do they just just more aggressive during a Herx? Or does something else change?

I’m getting married in six weeks and would give anything for this all to be gone by then! Thank you guys.

Sometimes it's easy to distinguish - ie You get an increase in current symptoms and even new ones start...that generally is a herx...especially if it happens soon after the start of a new treatment for bart. (ie within days to weeks).

If the bart infection is continuing to 'invade' it symptoms can come on slower...but, they can also appear quickly.

But...for some of us...like me...it's difficult. I get flares that aren't herxes...but they have been happening all along...even prior to treatment.

Whatever it is, I would look into getting a good detox regimen going...to help flush out the toxins.

Re: being better in six weeks. Well, no one can predict that. Because you caught it early, it's possible that you will feel better within 6 weeks...but often that isn't the case.
Posted 7/25/2018 4:19 PM (GMT -6)
Still waiting for appointment with MD so don’t have any official blood tests in. Been noticing faint steak like marks on my hips that have come and gone over last few days. I’d say I only see them about 20% of the time and 80% of times I check, nothing. They come and go pretty quickly. Images attached (sorry for weird angle). Does this look like Bart rash to you guys? I’d assume yes as my symptoms are also consistent with Bart, but I also could just be overthinking everything...

Thank you!

https://drive.google.com/open?id=1JxHJ--q1LdJcBzRWP3e-kYyMKviAmAWf
Posted 7/25/2018 4:46 PM (GMT -6)
Just pitching in here: If you do have bart, don't despair. I've had bart for a year (treating for 6 months now) and I've made huge improvements on nerve pain and tingling issues. Those were some of the first improvements I made, too, so you can do it! You're starting a lot earlier than I did, it'll probably go away faster for you.
Posted 7/25/2018 7:54 PM (GMT -6)
Noah - thank you so much for the positive note!! Exactly what I needed to hear. Hard not to get caught up in all the worst case scenarios. Thank you and very glad you’re doing better smile
Posted Yesterday 4:51 PM (GMT -6)
Saw “infectious disease” doctor thiS week (PCP referral) and have tested negative again for Lyme and Bartonella (quest labs). I know this test isn’t accurate, but doctor seemed very skeptical that I’d be infected with Bart and wrote the skin marks off as “allergic reaction” or something. Said there is no evidence ticks can transmit Bart to humans :/ He was a nice guy but definitely not LLMD. His advice was to stop all RX and herbs and see how I feel. I have been feeling a bit better but definitely not 100%.

Curious anyone who’s had Bart rashes... do these look suspect? Or am I over analyzing everything now?
Images: https://drive.google.com/open?id=1JxHJ--q1LdJcBzRWP3e-kYyMKviAmAWf wink
Posted Yesterday 5:04 PM (GMT -6)
Yes, the pictures look suspect for bartonella.

Congratulations on your upcoming wedding!! Please be aware there is a definitive possibility these infections can be sexually and congenitally transmitted.
Posted 8/6/2018 9:05 AM (GMT -6)
I personally, would not take the ID dos's advice to stop treatment. You should consider the risks/side effects of the treatments (which is minimal for a lot of people) vs. the risk of undertreating and allowing the infections to go chronic.

I typically see recommendations here to continue treatments 4-8 weeks past the time you are asymptomatic before stopping treatment.
Posted 8/6/2018 9:15 AM (GMT -6)
Given the tick bite and subsequent symptoms I would keep trying to treat the infections. You are still early on after inoculation so it is still a good window to really knock out the infections.

Most infectious disease doctors are 25 years behind when it comes to understanding these infections. They give them little credence and respect.

If you are looking for good resources, I'd suggest checking out Dr Horowitz's books and also Stephen Buhner's books.
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