shooting nerve pain/shortness of air

[sosudden]

9 year old daughter diagnosed PANDAS/PANS in January 2012.

KNOW it wasn't her initial onset in retrospect BUT she became almost nonfunctional and homebound and just "gone" until~~~

IVIG Feb 16th and 17th 2012. Tics, writhing movements, raging, disappeared in days!!! She was able to talk to us again. Interact and smile! Other symptoms waxed and waned and disappeared. OCD got better but never gone.

June 5th 1st MAJOR exacerbation after swimming at large public pool :-(.

2 days later HUGE yucky tonsils (rapid strep negative) and several fever blisters (fever never above 99.5. Ever.)

Then something new happened ~~~ postural tachycardia!:-( She asked me to feel her heart and it was bounding out of her chest and shooting as high as 178!!! When layng down it would slowly get down to 120 but as soon as standing it would go way up again. She couldn't do anything. Awful.

2 ER visits and Cardiology consult = autoimmune respnse to ??? trigger caused postural tachycardia which according to cardiologist will probably happen again. ECHO was normal. Increased Zithromax to 500 a day and got awful tonsils out. Took about 2 more weeks and heart rate suddenly normal again ~~ 60-98 beats per minute. OCD still awful.

BUT NOW, for the past 2 weeks, she has been having the feeling of not getting enough air, sudden and stabbing CHEST/RIB PAIN, and tingling/shooting pain through her arms and legs???!!!??

The tachycardia is creeping back.

Labs from July show current Mycoplasma.

ANA index 2.5 times normal at 58.7 so definite autoimmune, right?

But what???

OCD is awful ~~~ fear of dying effecting EVERY MOMENT OF EVERY DAY :-(

I read some older posts, one from tpotter sounded a bit similar....

Any one else have this with some answers?

Next step is adding an immunologist I suppose??

Thanks!

Laura

[tpotter]

What's being done to treat for mycoP? I have it, and it has now been 2 years...it's very hard to get rid of.

 

another thing to consider, is:

1) MycoP can be a co-infection of lyme

2) Tachycardia is a symptom of lyme (not always caused by it, but is a symptom, no less). DS had that several months ago. It's awful. Doctors also said it was caused by some kind of infection

3) Air hunger...I believe that is also a symptom of lyme and/or other co-infections, and I actually got that as a herx reaction about 1 month after starting azith for mycoP.

4) Pain in leg/arms/tingling...also can be symptom of bartonella and other lyme co-infections (I've had that, as well.)

 

If it was my child, I would be making an appointment with an LLMD, and determine if lyme/co-infections are involved (I would suggest an LLMD, as opposed to any other doc for this, because blood tests alone are a very inaccurate way to dx, and it is a clinical dx.)

[PowPow]

how about a rheumatologist?

[sf_mom]

I'd also check for Coxsackies 'Foot and Mouth'. Its a virus and can cause heart related issues. I understand Dr. T has made the connection as well. Its fairly easy to run titers through Lab Corp.

[sf_mom]

Sorry, also meant to say 'air hunger' is an indication of Babesia which is a TBI. Co-infection to Lyme. Test for Babesia can be run through Igenex.

[sosudden]

Oh thanks for your responses!

Dr T ran a bunch of labs 2 weeks ago.

3 of the hand-foot-mouth were positive.

Band 41 was positive.

All other tbi were negative BUT are these the reliable tests re:lyme? I get confused about that!

[sf_mom]

We are positive for all three titers for Coxsackies as well (all three children) and extremely high titers in child with heart issues. Two of our children were band 41 positive only for Lyme via Igenex and originally thought LD was a non-issue. We ended up doing the Dot Blot with provocation for Lyme and got an antigen match via urine which is highly accurate when positive. I was also positive for LD and then confirmed again via Epitope band 31 test. For our family, its gestational Lyme. Our children most likely do not produce antibodies because they have had since birth and do not recognize bacteria as foreign and why the antibody test were not helpful for our family.

 

Our babesia testing was also negative in 2 of 3 three children. Only one came back PCR positive for Babesia. We ended up using other means of testing for Babesia combined with treatment responsiveness to determine if the other 2 were also infected with Babesia. All three have seen huge improvements (minus herx of 4 to 8 months) with Babesia treatment. Once again, test were not specifically reliable.

 

Hope that helps. I would google 'air hunger and babesia' to see if any of the symptoms relate. I have also found the BLO symptoms list helpful as we had many of the heat intolerance issues outlined by him.

 

http://www.wayneanderson.com/pages/diseases/babesia

[philamom]

My daughter had postural tachyardia symptoms with her last flair. We were just about to take her to a cardioligist at CHOP who specializes in it, when she started to get better - so we cancelled the appointment. Also positive ANA, elevated sed rate & c. reactive protein. We went to a Rheumy who helped rule out some other possibilities. My daughter has pandas, lyme, bartonella. She was dealing with neuropathy before this flair began. On a side note, my daughter was on combo of abx for the lyme & co-infections. In Sept. she was taken off all medication for elevated liver functions. Unfortunately, she was also dealing with strep at the time with elevated d-nase, and she soon started to regress. The end of December we tried putting her back on one of the abx she was on - azith (2nd attempt), and that's when the tachycardia began, along with severe vertigo, nausea, gerd, and GI complaints. Her LLMD said she could no longer tolerate the azith. So not sure if it was drug induced, but just wanted to mention. She is now back on Amox full strength (took 3 months to do this) and is suprisingly doing much better. Her labs are getting better as well.

 

 

Here is an article I have on file:

 

Vagus Nerve Involvement with Lyme Disease (by Richard Rhee, MD)

 

The vagus nerve (also called the tength cranial nerve) is the longest cranial nerve and one of the most complex nerves in the human body.

 

It originates in the medulla oblongata (part of the brain stem) and travels to the pharnyx (throat), larnyx (voice box), trachea (windpipe), lungs, heart, esophagus, and intestinal tract to the transverse portion of the colon.

 

Disease that cause neuropathy, like lyme disease and diabetes, can damage the vagus nerve. The vagus nerve activates muscles in your throat, which are vital to a healthy gag reflex, coughing, vomiting, swallowing, and the ability to speak. It also acts like a brake on the heart, slowing down the heart rate- impairment may result in heart palpitations or tachycardia (fast heart rate). Depth and frequency of breathing as well as blood pressure are regulated throught the vagus nerve.

 

The abdominal branches regulate the stomach, pancreas, small intestines, large intestines, and colon. The vagus nerve also affects the kidneys and gall bladder and stimulates liver function.

 

Once treatment has begun with antibiotics, most patients with vagus nerve involvement report an improvement in symptoms.

 

Common Symptoms Caused by Vagus Nerve Impairment:

hoarseness

slurred speech

vomiting

palpitations or tachycardia

shortness of breath

high blood pressure

difficulty swallowing

gag reflux impairment

GI motility dysfunction

diarrhea

frequency of urination

Edited August 4, 2012 by philamom

[Bat_Sheva_Myllys]

I had the same thing myself. Clearly caused by Mycoplasma Pneomoniae. Crazy pulse, bouts of terrible weakness (gelled legs), total lack of energy, and it was all gone after several weeks of Azith!

And those of you who know me know I am the care giver, not the PANS patient! As for the shooting pains, both Sandra, the patient, Sharon, her older sister and I have them. Ibuprofen helps (if unlike myself, one is not badly allergic to NSAIDs). My then GP (now retired) was amazed with the EKG but trusted my experience and knowledge and noted the slight disturbing cough, like a hair in one´s throat I had, so the prescription was given right away.

 

Sandra has been on 500 mg Azithromycin daily for the past 3 years. She is not well but is better than the lowest point at which we started Azith and is stably so. She has her ups and downs, but is no longer bed ridden. Still a very long way to go. Still cannot be left alone at all, but when we get the "engines warmed up" she does her best to help at home, reads a bit, can once again watch TV, plays the piano, plays with the dogs. Improvement is very very slow and slipping back is the norm, but we are happy as we do keep going very slowly forward, if our balance is not at the plus side, it is at least not on the negative one either. One learns to be satisfied with very little things...