New here.....what would you do?

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worthy48
New Member


Date Joined Mar 2018
Total Posts : 12
   Posted 3/8/2018 1:48 PM (GMT -6)   
Hi Everyone,

New here and have a bunch of concerns and questions and need help figuring out where to start.  Sorry for the long post, but I am wondering if I have Lyme or a coinfection of Lyme…..

My daughter had a bulls-eye rash on her arm last summer and the emerg doctor said it was a spider bite and sent her home.  The rash disappeared by the next day.  I saw the bulls-eye rash again back in January and it disappeared again quickly.  (Does “disappearing quickly” sound characteristic of Lyme?)  I have recently read from a few different sources that Lyme can be spread within humans/families….is this true?  (I thought it had to be through a direct tick bite.)

Fast forward to now……in the last couple of weeks, along with a regular cough/cold, I have had a new and very odd/unsettling symptom come up which is waves of anxiety / panic / racing thoughts and a bit of a detached feeling.  I have also had waves of warmth over my back and head, tension and jitteriness in my arms, dry mouth, sore stomach, headaches.  These symptoms all sound very classic “panic-attack”-like symptoms, but I feel like it’s something else.  (I can also identify with other Lyme/tick-borne illness symptoms.)  Can anyone relate to this….does this sound like Lyme?  Aside from some headaches, I don’t feel achy or stiff or sore.

I did the Horowitz Lyme-MSIDS Questionnaire and depending on how I answer a few of the symptoms I fall into the “you possibly have a tick-borne disorder” to “you have a high probability of a tick-borne disorder”.  I don’t recall being bit by a tick, but based on my daughter having the bulls-eye rash, I am wondering if indeed I and/or both of us have Lyme or a coinfection.

What do I do now?  My doctor thinks (at least as a starting point) this is related to digestion and anxiety and I think she will quickly shut down the likelihood of Lyme and not do further testing in that regard.

I have called an LLMD office and am waiting to hear back on an appointment but they are booked until June and suggested I get Lyme testing done in the meantime.  So….I spoke with Igenex last week and they recommended the Lyme Immuno Blot Panel 3.  They said it is replacing the Western Blot and is 90% accurate.  They also recommended the Co-infection Panel #3 and said it is rare for results to be incorrect.  (90% accuracy seems high/unlikely from what I am reading?) Does anyone know if these tests would also test for mycoplasma (via PCR)?

For anyone that has been where I am, what would you recommend from your own experience…what would you do?  I know this could be a variety of things and am trying to figure it all out....without going broke or losing my health.

Spanish
Regular Member


Date Joined Sep 2017
Total Posts : 135
   Posted 3/8/2018 1:58 PM (GMT -6)   
Hi welcome to the forum, its good lyme is on your radar but if you have only been experiencing these symptoms for a couple of weeks whilst also having a cold I probably wouldnt worry too much, it could just ve a virus.

Id give it a little longer before spending on testing.

Just my opinion Im sure there willbe others along soon who know better than I do.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32503
   Posted 3/8/2018 2:03 PM (GMT -6)   
Welcome worthy.

Since your daughter had a bullseye rash - I suggest you do take her to a LLMD. Lyme rashes can come and go - not sure if spider bite rashes can?

Can it be spread with casual contact? There are differing opinions on that.
But, it's possible that you and your daughter were both in an area where there were a lot of ticks and you both got bit.

You could go ahead with the testing and bring the results to the LLMD appt.

If you don't want to spend a lot of money - you can just get the Lyme testing done and forgo the co-infections as they are even more inaccurate...and most LLMD"s will clinically diagnose them..OR treat you for all three B's anyway (Borrelia, Bartonella, Babesia)

I think you should both have an appt.
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

worthy48
New Member


Date Joined Mar 2018
Total Posts : 12
   Posted 3/8/2018 2:55 PM (GMT -6)   
Thanks for the replies! I would love to test both of us but the cost is so high...especially at the risk of false negatives (and positives).

I just called the LLMD to see about an appointment and they said the doctor does not do Lyme consults on kids under 16 years old. Now what?!? I guess I will have to call a few out of the area. In hindsight I am pretty upset that the hospital did not give antibiotics back in August....sounds like standard protocol amongst the Lyme world.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2421
   Posted 3/8/2018 3:12 PM (GMT -6)   
I am concerned about your daughter. Perhaps it was lyme related or perhaps it is not. Does she have any other symptoms?

Testing for coinfections - it's discussed here frequently, but testing for coinfections is unfortunately not very reliable.

I am concerned about your symptoms - anxiety-like. Anxiety can be caused by a pathogen or nutritional imbalance. If you go to mainstream doctor, they will likely prescribe you medication to treat the symptoms but will fail to address the cause of the anxiety. If you go to a functional medicine doctor (who looks at root causes of dysfunction in the body), then they are looking at resolving the cause of the problem (instead of just throwing medications at you).

If it were me, I'd seek out a functional medicine MD who can look at the big picture if you are concerned about your issues.

And although I don't believe lyme/etc is easily transmitted through "casual contact", I do believe it's transmitted more frequently than what is commonly accepted as through "tick bites only". There are more and more parents who believe the mom passed these infections to their children in utero/breastfeeding (as I believe what happened to my children).

As for treating children, there are few who will take kids on. It's hard enough for adults to find a good LLMD but even more difficult for children. It's a sad reality and simply unacceptable. I've had doctors turn us away - refusing to see or help my kids. SAD, really really sad.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1661
   Posted 3/8/2018 3:27 PM (GMT -6)   
"As for treating children, there are few who will take kids on. It's hard enough for adults to find a good LLMD but even more difficult for children. It's a sad reality and simply unacceptable. I've had doctors turn us away - refusing to see or help my kids. SAD, really really sad.

I did not know that. That is unbelievable!!!

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2421
   Posted 3/8/2018 3:33 PM (GMT -6)   
WalkingbyFaith said...
"As for treating children, there are few who will take kids on. It's hard enough for adults to find a good LLMD but even more difficult for children. It's a sad reality and simply unacceptable. I've had doctors turn us away - refusing to see or help my kids. SAD, really really sad.

I did not know that. That is unbelievable!!!


One time, I called a highly recommended LLMD in our area who doesn't take insurance. Her initial appointment is like thousands, but I was VERY desperate at the time. The clinic refused to see my son because the doctor has a protocol of taking a lot of pills/supplements and following a strict GF/DF diet (and said it was too hard for a child to follow). I explained to them that my kid was already taking over 50 pills a day (INSANE!) plus already following a GF/DF diet. And they STILL REFUSED to see my son. So, I basically asked, "you are refusing to help my son then?". The clinic person then stumbled for words....

We've also had a PEDIATRIC neurologist clinic refuse to do an evaluation on my son. They appeared to only care about headaches and seizures. I was stunned. All I wanted was an evaluation...

Sadly, those are not the only examples. sad
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

worthy48
New Member


Date Joined Mar 2018
Total Posts : 12
   Posted 3/8/2018 4:37 PM (GMT -6)   
Thank you everyone. Yes, unbelievable kids have trouble getting treated....yes let's wait until the issue becomes chronic amd then they can handle all the meds to treat it. (Shake my head.)

1000daisies:
I have always been a worrier and I have been doing a lot of worrying about other things the last couple of months and stress levels have been high. I am wondering how much of this is digestive related as well. In all the years, though, that I have had anxiety, I have never had the weird thoughts, panic feelings, or detached feeling. It is really quite unusual and unsettling. Normally I would not have connected it to my daughter (and maybe there is no connection, who knows) but a few weeks ago she developed a regular cough/cold but along with that I saw her do a handful of motor tics - nothing hardcore but something I saw. I also thought she was acting a little off here and there but maybe I am just imagining it. Overall she is wonderful - smart, sweet, kind, loving and developing well. Our ped said kids do strange things sometimes when they are sick. Anyways, shortly after that, I caught the cold too and then experienced my odd feelings and I wondered if the things I thought I saw with my daughter are the same as what I have been feeling (albeit likely on a milder level for her). So that got me thinking to possible infections we both might have. I thought of PANDAS/PANS (because of the sickness and tics), which led me to Lyme. As I said I can identify with a bunch of the symptoms but can probably also explain many away. I.really want to do the test but the thought of spending so much for a test that has so so accuravy levels has me pausing.

I am in Canada...do you know if Integrative MDs can prescribe meds and / or order tests that would be covered? I am looking at the Naturopathic route but I don't know that they can order standard bloodwork or other tests....they can do some stuff but it is out of pocket, unless you can get a family doctor to help with ordering tests and I am not sure my doctor will. If an Integrative MD can be naturopathic + "regular" doctor, that would be awesome.

worthy48
New Member


Date Joined Mar 2018
Total Posts : 12
   Posted 3/8/2018 4:40 PM (GMT -6)   
Just to add....we have all been really tired and complaining of sore (not upset) stomachs. My daughter has been saying she doesn't want to go to school because she is tired, her stomach hurts and yesterday that her head hurts. I am feeling the same but maybe it is all related to our cold (which seems very run of the mill variety, not anything like the flu or pneumonia, etc......unless it is myco p - my dr wouldn't test me for it even though I asked!).

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32503
   Posted 3/8/2018 4:46 PM (GMT -6)   
Just an FYI - if that rash your daughter had is not a spider bite and is indeed from a tick - it is Lyme disease and she needs to be treated. It is diagnostic.

I am in Canada. Which province are you in?
I'm in BC and there are LLND's who treat LD

Also some options in Alberta (herbal only), Ontario , maybe Quebec.

You can email me for information.
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

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2101
   Posted 3/8/2018 4:51 PM (GMT -6)   
Hi and welcome,

Since you are in Canada , I would reach out via email to "Girlie" our head moderator, she is also from Canada and should be able to answer those questions.

I see she previously responded to this post but she may not see your newer response about Canada.

Take care and I wish you and your family the best of healing, Jo

worthy48
New Member


Date Joined Mar 2018
Total Posts : 12
   Posted 3/8/2018 5:55 PM (GMT -6)   
Girlie, can you PM me your email info....never mind I just found it. Email sent. smile

Post Edited (worthy48) : 3/9/2018 10:27:48 AM (GMT-7)

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