posted
Daughter 19 with sudden onset anxiety at age 15, gi complaints, major separation anxiety (separation anxiety not seen as a younger child) Currently working with doctor with possible Pandas diagnosis, has been on augmentin 28 days, much more energy, watching anxiety symptoms at this point. blood work done for strep titers, negative, but tested high for mycoplasma pneumonia antibodies. Lately on the discussion board for Pandas I have seen a lot of information related to Lyme. She was tested in the beginning for Lyme and test was negative. (I don't recall which type of test.) If I am understanding what I have been reading it seems the two can be connected the Lyme and mycoplasma? and or the way Pandas (strep infections) hide in the body, same as with Lyme. Any information will be helpful. Want to be sure we are treating the right thing. thank you in advance.
Posts: 7 | From lyme ct | Registered: Jan 2010
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posted
I'm looking for a PANDAS discussion board. What board do you go to?
I'm leaving to take my son to school. I'll reply to your post when I get back.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I've often wondered this too.
One time I asked a random doctor to test me for strep, and he was like, "you do NOT have strep, but I'll run the test."
And then he called me back and told me it had come back positive for current infection, so I should reschedule an appointment.
But I didn't go back of course, because he was so sure I didn't have it, that I didn't want his 5 days of sympathy antibiotics.
I KNEW deep down that I wasn't just recently infected (which is what the doc was assuming), I knew that I'd probably been carrying it for awhile, so I just never really bothered trying to treat it, and found satisfaction with my "told you so" moment.
I don't think I was on any antibiotics for Lyme at the time. Was taking some time off from treatment.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
ps--I have tested positive on the Lyme Western Blot (very obviously positive) and also positive for Bartonella and babesia, so I doubt strep is the only thing I'm fighting.
But who knows how significant having strep that won't go away can be?
Maybe by now the strep is in remission. Who knows. I'm hoping my antibiotics or some of my herbals are hitting it.
Also hoping eventually my immune system will handle it.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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posted
oh, I also will normally test positive for active mycoplasma pneumnoniae.
I honestly have no clue which infection is actually making me sick.
So far Amoxicillin and Bicillin (not together) seem to help. Bactrim DS helps too.
If you are pretty sure your daughter is struggling with some kind of pathogen, the best suggestion I have is to just try different things (like different antibiotics, etc) until something works.
There is a blood test, that I think is run by LabCorp, called C1Q Immune Complexes, or is also called "circulating immune complexes" by some doctors. Though many doctors have probably not heard of this test.
Basically, if it comes back high, that is a good indication you could be fighting a serious, chronic infection. Though it will not identify the infection, it will only tell you your body is actively fighting something, on a chronic basis.
An immune complex is an antigen bound to an antibody. So basically the test is picking up dead matter floating around in the blood that your immune system has "handled."
So if that test comes back abnormal (high), that could be one indication your suspicions are correct that this is infectious. Though if it's negative, not sure you could negate the possibility. I have lowered my numbers just by taking systemic enzymes, because it helps clear the immune complexes out of the blood quicker. Doesn't mean they aren't still there.
Some say autoimmune could cause this test to be positive, but I dunno how true that is.
Posts: 4590 | From Midwest | Registered: Jun 2008
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hoosiers51 thanks for the test info a good thing to have...I have a good ND that will run what is needed if I ask.
She fits the Panda profile for older kids so well but also when I read Lyme stuff I wonder and I wonder about connections with it all. Seems like this is a good place for info...thanks
Posts: 7 | From lyme ct | Registered: Jan 2010
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linky123
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posted
My daughter came up with a strep infection a couple of years ago which we treated with the usual course of zithromax. She is allergic to amoxicillin.
Anyway, her anxiety went off the charts - scared at night, worrying about everything. She was diagnosed with PANDAS. The doctor said it usually resolves itself in a few months; which it did.
She was positive for lyme at the time, but we weren't aware of it. She has since been tx for lyme, was checked for cos. recently and came up negative.
Her lyme is now in remission.
Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Linky123 how long inbetween the strep infection did the anxiety begin and do you think it was the amoxicillin that took care of everything. Did you need to do anything for the Lyme. Glad to hear she is in remission.
Posts: 7 | From lyme ct | Registered: Jan 2010
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posted
I came down with a severe case of strep b about about a month prior to being diagnosed with Lyme. I was put on multiple antibiotics without any relief from it. Multiple testing led us to the diagnosis of Lyme.
Posts: 84 | From Seattle, WA | Registered: Sep 2009
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posted
I apologize for the previous post. I just realized that had nothing to do with the topic at hand. Posts: 84 | From Seattle, WA | Registered: Sep 2009
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Hi khill,
The anxiety started almost immediately after the strep infection. She had watched a scary movie, and it seemed like that is what triggered things. We don't usually watch that kind of stuff and she's very sensitive anyway.
We started her on amoxicillin but she couldn't tolerate it, so the doc put her on a regular course of zithromax; I think she just did one Z-pack.
The strep cleared up, but the anxiety remained. I discovered the PANDAS connection after researching the internet, and our pediatrician confirmed it. He said it usually resolved on it's own in a few months; which it did.
He said we could do a month long course of abx, or take a wait and see approach, which is what we decided to do, since the abx are really hard on her stomach.
It was probably a year later we discovered the lyme and after trying abx, and not being able to tolerate them, we opted to go the Germany for Bionic 880 tx.
Dr. Woitzel checked for cos. at the end of the tx and did not find anything.
It was successful for us. We are all much improved and are now working on detox, parasites, etc., improving immune function etc.
I don't know about the connection with mycoplasma, just that it can be difficult to get rid of. Hopefully the abx she is on will take care of the problem.
It sounds like you have a good md, one that understands the disorder. Our pediatrician said some doctors don't even acknowledge that PANDAS exists. (kind of like lyme!)
Will keep you in our prayers; it is a tough thing to deal with.
Keep us posted on her progress.
Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
linky123 thanks for your post, sounds like you have things under control with your daughter.
Our trigger seemed to be a friend who had strep, I thought for sure she would come down with this (this was a boyfriend)they were together before he knew and was treated for the strep.
she did get a slight sore throat but nothing you would consider strep and went away in a few days but with in weeks of that the anxiety popped in.
Yes there is a lot of docs who don't know about pandas or how to treat it, when I started looking into it, it hit me how much alike it was with lyme with trying to get information and false test and doctors who believed etc.
I have to say that compare to a lot of others on the boards I read I feel blessed, although it has been hard for my daughter since it began in her teens at least I was able to talk with her and she understood a lot of what was happening to her body even before finding the pandas information but some of these people are dealing with little kids and are having lots of issues at once to deal with.
so thanks for your info and prayers, we are on the break right now with the abx and seeing how things are going...i can still see her energy level up so that is good.
Posts: 7 | From lyme ct | Registered: Jan 2010
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map1131
Frequent Contributor (5K+ posts)
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posted
My grandson had strep 3 yrs ago and it took him forever to get over it. Well, he really never got over it. He's 9.
He's had suspicious sx since. I suspected lyme for a long time. Parents refused testing. He waxes and wanes with different sx.
He goes through inflammation flare-ups same time I do. His parents think he is hypocondriact(sp). Not me. I hear his concerns. I feel his pain.
Daughter and grandsons have lived with us 1/2 time for 18 mths so I've been able to observe him and his patterns more.
Could it really be that Pandas is really lyme & company?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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springshowers
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posted
This is all very interesting and intriguing and was brought up on another thread too lately.
The year I got so severely ill and bedridden .... I for 6 months straight had chronic and repeated strep infections. I had them severe enough they were trying to do surgeries down my throat saying that it was life endangering.
I was freaked out and did not know what to think. I had the infection every few weeks and it just kept repeating until 6 months later I just fell so ill and was in bed and did not get up for years.
So... I just never heard anyone else really talk about strep.. and now I just wonder so much about the connection...
Does anyone know how to find out and if there are tests that you or others are doing that would indicate this.
Also.. I never even heard of "Pandas" ? Thanks for all the information and this surely could be a very important piece of the puzzle....
Sadly this is like a 100 piece puzzle it seems we are working with.. But if we find all the edges and connect them maybe the insides will come easier for us..
: )
Blessings.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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linky123
Frequent Contributor (1K+ posts)
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posted
khil - I'm so glad to hear your daughter's energy is still good without the abx. I hope it continues to improve.
map - I think you are right about PANDAS and lyme; we just didn't make the connection at the time our daughter was having trouble with it. Considering all the problems lyme can cause, why not this - especially the anxiety and neurological aspects of it?
We'll keep your grandson in our prayers too. It's hard to see the little one's deal with it because they just don't understand what's going on. He's blessed to have you there to help.
spring - I don't know of a test for it, though there may be one. My daughter was just dxd. by the pediatrician given her history with the strep and anxiety, ocd behaviors etc. It worries me that another strep infection could bring it all back.
Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
My daughter is diagnosed with Lyme and has OCD. I have wondered about the PANDAS connection, also.
She has had the strep titer test and it was very low, which would imply no PANDAS. Recently, I have been reading that the test isn't necessarily accurate, so I wonder about her.
I haven't looked into it in detail, because what I have read about it is that treatment involves long term abx and steroids. Since steroids are not something we are willing to do right now, we are saving the PANDAS issue for later, if we need it.
Posts: 984 | From US | Registered: Dec 2007
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posted
From what I understand no real testing for Pandas, it is blood work for strep and mycoplasma pneumonia (some docs test for this) to test for antibodies only and it seems even that isn't always accurate, history is also part of trying to get a diagnosis.
I have only just started with all this so it is new to me. I am gathering all the information and much of it is over my head.
Also since my daughter is older she does not really fit the critera for Pandas, it ususally hits the younger children.
There seems to be some research now that is pointing to older children having it...there are not as many out there so really we are ginny pigs at this point.
It seems that sudden onset of symptoms is a big part of this, be it anxiety, ocd, tics. One day you have a healthy kid and the next you don't.
I came to this board via the way of a another board where they were talking about the importance of making sure you were testing for Lyme also and some one had suggested a link of co-infections of mycoplasma sometimes with the lyme so it got me thinking, since that is what she had high antibodies in.
I just want to be sure we have everything covered and I think the similarities is interesting. I don't know if they could be connected, don't think any one has connected those dots yet.
Or could it be because the immune system is not working and the strep is just opurtunstic and creeps in along with the lyme???
I thank you all for your post, all of it is helpful when trying to figure things out.
I hope all our journeys with whichever lyme or pandas are short ones and we have healthy kids (and adults) once again.
Posts: 7 | From lyme ct | Registered: Jan 2010
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posted
jkmom, sorry I wanted to post this for you and forgot.
The steroids are something I don't want either but from what I read that was really just being used as a help to diagnose.
Seems they give a steriod burst (not sure about how or how much) it is short term but what it seems to tell them is if symptoms disappear it helps to diagnose the pandas but is not a cure.
Symptoms generally come back after a few days or weeks after stopping steriods.
And they do not keep them on long term or continue to use as in trying to cure, only to see if symptoms disappear.
I would rather not do that and that has not been mentioned so far for my dauther thankfuly.
The long term antibiotics though yes seems to be what helps a lot. Some seem to be on for quite awhile while others seem to do ok with one or two doses.
Some times too it seems they have to find the right antibiotic and that is trail and error and time consuming too.
Also there seems to be a theory out there that some out grown the condition, wouldn't that be nice!
Hope this helps
Linky123 I don't think from what I have been reading that another strep always brings it back, it can and some react to infections and only for a few days and some it does bring it back and then again others it has not been a problem for.
In the case of the older kids 16 and on they only have research so far following some for 3 years and so far they have been fine.
K
Posts: 7 | From lyme ct | Registered: Jan 2010
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