Is lyme a possibility

[bws1565]

Hi all,

 

I was active here several years ago when DD15 was diagnosed and treated for Pandas. This community has helped alot.

 

DD is now in an OK position. She is currently not on any antibiotics. She does take a good multi vitamin (Juice Plus).

 

You all know the typical Pandas symptoms of OCD, anxiety aneorexia etc. so I will not elaborate. But, during a recent flare, which we only treated with homeopathic remedy Streptoccocus 200c with success, she had a 5 second non responsive staring episode which I suspect might have been a seizure? She also developed severe eye headaches which no doctor could properly diagnose. It has gotten better since she is on Juice plus. She is still always tired, does not have the strength for physical activity. She reads alot; and has become very educated! She also mentioned to me that she "hears a second after everybody else". This causes her social difficulties.

 

I have recently become aware that some children who are diagnosed with Pandas might in fact have Lyme disease, which does not allow the body to fight the infection. And although the child might have strep, since the body will not create a fever, it will stay stuck in the body and eventually cause Pandas symptoms. I think this might be the case here. My daughter is never sick. I don't recall if she ever had something more than a mild cold. She does have a low White Blood Count 3.7, which someone mentioned to me means that her body is not fighting infection effectively.

 

I would check her for Lyme, but she developed a severe dislike to doctors and bloodtest, If I want to protect my pride (she really acted up in doctors office in the past), I need to be pretty sure if this indicates Lyme or coinfections, what tests we need to do and other information anybody could offer. I would be very grateful for any input.

[mama2alex]

Given all the symptoms you're describing, I would say yes, Lyme & co are a definite possibility. I would ask for recommendations for a good LLMD in your area and let them decide what tests need to be done. It's worth putting your "pride" aside, and a good experienced LLMD will have seen the behavior before and won't bat an eye. One thing we've found that helps with blood draws is Emla cream, which numbs the skin and dulls the pain of the needle. We also resorted to bribes during the period when our DS had a needle phobia.

[ktdommer]

Yes, it could be Lyme. She has too many symptoms in my opinion to just be PANS. Sounds like bartonella and or babesia could be coinfections. I would specifically seek out a top ILADS doctor, not just an LLMD. Testing should probably be done through IgebneX. lymetap is an organization that helps cover the costs, if you should need it and qualify.

I would check out LymeNet. Org and see what dietary changes you could start to make with maybe the addition of a few safe herbs.

A good Lyme source is Buuroscanos Guide to Lyme Treatment which is free by googling. You can start getting educated so you will know what a good treatment looks like.

I hope you get the answers you need. Lyme and PANS is a difficult road so take care of yourself, too.

K

[WorriedDADNMOM]

I wonder about the needle phobia.....dd High Mycoplasma titers IgM 5.9..... Way high with similar stuff. Mutism a couple times...once for over an hour or two.......tremors in addition to normal tics. That said....when we were on Zith....initially regular 5 day script, IgM reduced to 3.5 and these things subsided/reduced greatly......the needle phobia was the "a-ha" moment. That irrational fear was gone quick. Tremors went away.....

 

I would not dispell the lyme, but look for anything and everything.....including mycoplasma and EBV(mono).......esp if you have a good doc on hand that is Pandas/Pans literate and friendly.