Daughter's symptoms

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Dahlias
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Date Joined Jun 2017
Total Posts : 464
   Posted 2/10/2018 7:43 AM (GMT -6)   
I'm pretty paranoid and I'm afraid my daughter might have a tick-borne illness too, but I'm wondering what you guys think.

Her symptoms:
-anxiety, for years
-upset stomach, for years (often can't tell if she's hungry, too full, or has an upset stomach)
-air hunger off and on in the past year
-said that last night her feet and head felt tingly, alternating warm and cold, and she said that happens sometimes when she's getting sick
-now her stomach feels "funny"

She's 16 and has had multiple tick bites especially when she was little. Tested negative for Lyme and mycoplasma pneumonia (my requests) a few months ago through Labcorp, for whatever that's worth.

I don't want to treat until it's obvious and disruptive because you guys know how that makes things worse, at least temporarily. But what do these symptoms say to you?

Post Edited (Dahlias) : 2/10/2018 6:50:34 AM (GMT-7)


WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1682
   Posted 2/10/2018 9:13 AM (GMT -6)   
Says babesia to me. Maybe more. I understand the fear of treating, but what you described is obvious and disrupting. If left to run its course, it will and will likely get harder to treat. Just my opinion.

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 464
   Posted 2/10/2018 9:59 AM (GMT -6)   
Listing them all together, it does look obvious. But anxiety/depression run in the family and so do stomach issues. The last few really make me suspicious though. Can't think of any other reason for air hunger. Doesn't seem to be asthma and an inhaler didn't help.

She has a low-grade fever now and her neck hurts. (Thinks she slept wrong.) Could be fighting flu today ...

I think I will have to get her tested through IGeneX. This will scare her since she has seen the effect of these things on me. sad
"This too shall pass. It might pass like a kidney stone, but it will pass."

aphysicalwreck
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Date Joined Sep 2012
Total Posts : 647
   Posted 2/10/2018 10:51 AM (GMT -6)   
Sounds like Lyme to me. I have the tingling head too. You should do the igenix testing for sure.

Girlie
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Date Joined May 2014
Total Posts : 32667
   Posted 2/10/2018 11:48 AM (GMT -6)   
WalkingbyFaith said...
Says babesia to me. Maybe more. I understand the fear of treating, but what you described is obvious and disrupting. If left to run its course, it will and will likely get harder to treat. Just my opinion.


I agree - You don't want to wait until the symptoms get worse than they already are.

...and they don't sound minor to me. She had several tick bites...so....

I know it's not what you want to hear...sorry you're dealing with this, Dahlias.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 464
   Posted 2/10/2018 1:28 PM (GMT -6)   
Girlie said...
I know it's not what you want to hear...sorry you're dealing with this, Dahlias.


It's really not, sigh. But it's what my gut says too. sad Thanks.

Post Edited (Dahlias) : 2/10/2018 12:31:11 PM (GMT-7)


PeteZa
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Date Joined Jul 2015
Total Posts : 9729
   Posted 2/10/2018 4:53 PM (GMT -6)   
One of my first symptoms was I thought I had slept on my neck wrong. But, it did not go away in a day...... that's when I knew something else was happening.

dacarte3
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Date Joined Feb 2016
Total Posts : 1897
   Posted 2/11/2018 6:12 PM (GMT -6)   
Her symptoms plus she's been bit multiple times. That's as close to 100% probability this is lyme as you can get.

Taking a lyme and co test through labcorp is almost like not taking a test at all.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 464
   Posted 2/11/2018 7:20 PM (GMT -6)   
PeteZa, I remembered that coming up as a symptom here.

Dacarte3, I got my positive through Labcorp -- thank goodness because I wouldn't have known to pursue it further. But I know I was a "lucky" one.

Going to PCP tomorrow. Will see if I can get him to sign off on IGeneX. Any suggestions on which tests to do?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 2/11/2018 7:51 PM (GMT -6)   
The Lyme WB IgM and IgG for $250


Their two new tests are another option - similar to the Armin Labs tests.

Immunoblot and IGXSpot

/www.igenex.com/testing/diagnostic-tests-for-borrelliosis
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 2/11/2018 6:56:55 PM (GMT-7)


Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 464
   Posted 2/11/2018 7:57 PM (GMT -6)   
I think we need babesia too, right?
"This too shall pass. It might pass like a kidney stone, but it will pass."

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 2/11/2018 8:04 PM (GMT -6)   
Dahlias said...
I think we need babesia too, right?



Well the coinfections are a crap shoot as far as getting a reliable result.

Depends on how much you're willing to spend.

Along with Babs, consider Bart.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 464
   Posted 2/11/2018 8:15 PM (GMT -6)   
OK, thank you!
"This too shall pass. It might pass like a kidney stone, but it will pass."

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 2/11/2018 8:29 PM (GMT -6)   
Dahlias said...
OK, thank you!


I don't know which Igenex tests are best for Bart and Babesia.

Hopefully someone who does know will post,
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Spanish
Regular Member


Date Joined Sep 2017
Total Posts : 137
   Posted 2/16/2018 11:23 AM (GMT -6)   
Im pretty new to this but a stiff neck is a regular symptom of mine, I was bitten by a tick and did nothing and sure enough symptoms got much worse.. Im now in treatment 4 months and doing much better.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 2/16/2018 12:03 PM (GMT -6)   
Great to hear you are doing much better now, Spanish!
Thanks for posting.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 464
   Posted 2/16/2018 8:23 PM (GMT -6)   
I'm glad you've improved too!

Her neck pain went away within the day, but she's been feeling a variety of odd symptoms that she finds hard to describe. One is a light feeling in her chest. Does that sound familiar to anyone? She also noticed alternating between being hot and cold, and some sweating both day and night (not drenching). Her temperature has always run low -- is that a symptom or just a quirk?

Got her tested through Labcorp yesterday and ordered an igenex kit. Her pcp agreed to sign off on it. Still not sure what tests to do though.

Post Edited (Dahlias) : 2/16/2018 7:30:19 PM (GMT-7)


WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1682
   Posted 2/16/2018 8:52 PM (GMT -6)   
Dahlias said...
Her neck pain went away within the day, but she's been feeling a variety of odd symptoms that she finds hard to describe. One is a light feeling in her chest. Does that sound familiar to anyone? She also noticed alternating between being hot and cold, and some sweating both day and night (not drenching). Her temperature has always run low -- is that a symptom or just a quirk?


1) Feelings in chest

Familiar? Yes. I've had all kinds of chest symptoms.
- mild air hunger (feeling like I couldn't get a satisfying breath or fully expand my lungs; would stop to "concentrate" on breathing and would yawn trying to stretch my lungs)
- feelings of slight tremors or vibrations in my chest
- shortness of breath to the point of feeling like I had asthma (asthma test was negative; pulmo workup was normal)
- pleuritic type pains in the chest
- tightness and rigidity in my chest wall that made breathing difficult (lungs couldn't expand properly but it was due to my chest wall feeling like immovable concrete as opposed to something wrong with my lungs)
- sharp pains in the center of my chest
- general feeling like I wasn't breathing right (most likely autonomic dysfunction)

2) Temperature fluctuations, sweating, low temperature are all common and are associated with Lyme or babesia or bartonella.

- I have always had low temperature, even more so now that my symptoms are worse. I have PCR positive Lyme and ehrlichia and clinically diagnosed bartonella and maybe babesia. I associate the majority of my symptoms with bartonella.

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 464
   Posted 4/24/2018 8:56 AM (GMT -6)   
Got her results:

IGeneX -- Lyme IgM negative and a few IgG bands positive, including band 41. Babesia Duncani negative.

Different lab -- Bartonella positive.

This doesn't explain the air hunger.

Doctor wants to start with doxy 100 mg twice a day for a few weeks and reassess.
"This too shall pass. It might pass like a kidney stone, but it will pass."

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 464
   Posted 4/24/2018 9:03 AM (GMT -6)   
Also, thank you, Walking by Faith -- I missed your message before. Some of your symptoms sound like hers. You attribute them to bart?
"This too shall pass. It might pass like a kidney stone, but it will pass."

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 4/24/2018 9:18 AM (GMT -6)   
Dahlias - what lab was she positive for Bart?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 464
   Posted 4/24/2018 9:51 AM (GMT -6)   
I don't know -- they take care of the normal labs through their office. It wasn't IGenX.
"This too shall pass. It might pass like a kidney stone, but it will pass."

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 4/24/2018 10:04 AM (GMT -6)   
Dahlias said...
I don't know -- they take care of the normal labs through their office. It wasn't IGenX.


This is with her PCP, right? Not at the J. Clinic.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 464
   Posted 4/24/2018 10:27 AM (GMT -6)   
I guess I didn't update this thread -- I took her to a functional/integrative LLMD closer to home for diagnosis. She's well-established and trusted in the local lyme community. I know she pulses and uses combos, so I was surprised at her recommendation, but I guess it's good to start gently.
"This too shall pass. It might pass like a kidney stone, but it will pass."

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 464
   Posted 4/24/2018 10:42 AM (GMT -6)   
I still don't feel like I know if THIS is what's causing her symptoms. I was expecting babs. Should have been a babesia microti test too but results for that weren't there.

What if this isn't what's causing her symptoms and there's something else going on that we're missing? What if her breathing symptoms and anxiety are all related to gut issues and we treat for TBDs and stir up something that wasn't bothering her?
"This too shall pass. It might pass like a kidney stone, but it will pass."
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