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I just want to add here that lyme is just another microbe that can create "PANDAS" symptoms.

 

Lyme is a microbe just like strep and mycroplasma are microbes and lyme is not necessarily a different diagnosis than PANDAS. I do not believe that these are two different illnesses. My son had elevated strep titers and reacted to strep and also had lyme has one of his microbes that affected his "PANDAS" symptoms.

 

Why differentiate between the microbes? There are many PANDAS kids without elevated strep titers and maybe they have other microbes creating their PANDAS symptoms? In order to heal all of these children on this forum, we need to be open and help each other with all of the different bacteria that can create psychological/neurological symptom!

 

elizabeth

Edited by KeithandElizabeth
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Tired Mom - Thank you! That's so encouraging & I'm glad to hear that your daughter is doing so much better. This doctor was the first doctor to ever even pay attention to me, so that meets "good doctor" qualifications in my book, hahah. Every now & then when I'm stuck in the middle of a bad period it's hard to remember how much worse I was four years ago. That gives me a little hope. I won't stop searching until I do feel better, that much is for sure.

 

Mandy - When I initially got the tickbite, I only told my bestfriend at the time who was on the camping trip with me. When I came home a week later having gotten bitten by a tick & getting a rash didn't seem like much to look into. If you haven't noticed yet, my family is anything but medically proactive. I hadn't even thought of the tickbite until I started reading about Lyme on these forums. In three years of seeing him my old neurologist never asked me if I had been bitten. It was only when the test came back & my curiosity got the best of me that I googled it & discovered that my rash had most definitely been a bullseye rash. I had had minor tics, anxiety, & compulsions for years by then, but about half a year after the tick bite (I believe it was half a year.. My memory doesn't serve me well going that far back. :/) my symptoms "exploded". Tics that to this day I can only describe as "bodyrocking", SCREAMING vocal tics, & compulsions aplenty. Desks in the classroom had to be arranged in threes, for example. This "explosion" is what led us to seek a doctor & eventually find P.A.N.D.A.S., but I've always had symptoms that couldn't really be explained by P.A.N.D.A.S. For example, my disorienting headaches & horrible muscle pains. I've posted about my headaches, but I get them just about everyday, with some days off, to different degrees & they are absolutely mindblowingly painful & nothing helps. Also, muscle pain. I want to say that the muscle pain came even before the explosion, but I don't remember well enough to say for sure. Mostly in my shoulders but also in my legs, it used to bring me to tears everyday. Also, when every other P.A.N.D.A.S. kid seemed to be battling insomnia, I was dealing with quite the opposite. I. Can't. Stay. Awake. Doesn't matter how long I sleep (& I can sleep for fifteen+ hours a day if I have the chance), I NEVER feel awake.

 

P.Mom - I have to go to school but I will reply to your post & PM when I get home! Sorry!!

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As per Dr. T and Dr. K and Cunningham...Lyme is indeed a very different, seperate illness than PANDAS...completely different diagnosis. The only way they can "come together" is if a PANDAS kid gets Lyme...that can aggravate PANDAS symptoms. Lyme is NOT considered to CAUSE PANDAS.

 

It is VERY important to differentiate between the two disorders because steroids can bring TREMENDOUS relief for PANDAS kids...almost miraculous. Many use this when flairs come to handle the flair...and it works wonders for them. However, steroids are extremely contradicted in Lyme....can make symptoms intractable. Plus, PANDAS is an immune dysfunction disorder that can be helped tremendously with IVIG to reset the immune system...or PEX to remove the antibodies. Lyme is not an autoimmune disorder..therefore, treatments are different....the only thing in common with treatments is antibiotics.

 

Yes, I agree, be open...but, don't tell a suffering, impressionable teenager that they HAVE Lyme when there is no way any of us can say that. That is not being open, and, as the adults on this forum, we need to be careful with such cases!

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P.mom, thanks for that clarification. I was getting confused trying to figure out if people were saying lyme caused their kids pandas. I think we do have to be careful with misinformation and with trying to put puzzle pieces together that just don't fit. We all want to find answers and help our kids so it's easy to want to just jam the pieces together until they do fit.

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ajcire...

 

Thanks! Yes, sometimes we do just want to put pieces of the puzzle together when they don't fit. But, we have to try, I guess....that is how we learn. :)

 

Yes, according to the PANDAS "experts".....Lyme does NOT cause PANDAS.....but, Lyme can aggravate existing PANDAS. And, they are two completely different illnesses.

Edited by P.Mom
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We are dealing with congenital Lyme and as it was explained to me by our dr, the immune system can take quite a hit with Lyme and therefore make you vulnerable for things like PANDAS and frankly any autoimmune disease. I'm not saying that is true in this case, but it can happen as it did with my son. When I spoke with Dr. Cunningham recently, this was an area she was going to be looking into. Some dr's believe that IVIG can be helpful with Lyme also.

 

As per Dr. T and Dr. K and Cunningham...Lyme is indeed a very different, seperate illness than PANDAS...completely different diagnosis. The only way they can "come together" is if a PANDAS kid gets Lyme...that can aggravate PANDAS symptoms. Lyme is NOT considered to CAUSE PANDAS.

 

It is VERY important to differentiate between the two disorders because steroids can bring TREMENDOUS relief for PANDAS kids...almost miraculous. Many use this when flairs come to handle the flair...and it works wonders for them. However, steroids are extremely contradicted in Lyme....can make symptoms intractable. Plus, PANDAS is an immune dysfunction disorder that can be helped tremendously with IVIG to reset the immune system...or PEX to remove the antibodies. Lyme is not an autoimmune disorder..therefore, treatments are different....the only thing in common with treatments is antibiotics.

 

Yes, I agree, be open...but, don't tell a suffering, impressionable teenager that they HAVE Lyme when there is no way any of us can say that. That is not being open, and, as the adults on this forum, we need to be careful with such cases!

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Yes,she will be looking into Lyme soon...great!! She also showed me several graphs she had that included several types of antibody levels in Lyme, PANDAS, ADHD, and Tourettes. They were all very different......the only thing similiar with the Lyme and PANDAS was Cam K activation (I can't remember if one was higher than the other).....the antibodies present were very different at many levels.

 

Who knows! That is why I am so glad she got this grant and is researching this!!!

Edited by P.Mom
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I completely agree that we are all not in a position to tell anyone that they have an illness or disease. I do not have the qualifications to tell anyone that they have lyme disease. I thought I was responding to someone who said their doctor said they had a positive lyme test. Perhaps, a miscommunication.

 

The great thing about a really good LLMD is that they do not just look at lyme, but they look at all microbes. Our LLMD just found mycoplasma and staph in another PANDAS patient and did not find lyme. This child had TICS are their primary symptom. So, I do not think this is a discussion about Lyme versus PANDAS, but about clearing all of the microbes that are creating an imbalance or an autoimmune response in a person. My son had lyme, babesia, bartonella, mycoplasma and strep. Clearing all of these microbes has has been life altering for us and he is finally able to go to school for the first time in a year.

 

I think these a good debates and I feel that they are important that we are just trying to help each other and learn from each other.

 

elizabeth

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Very interesting and exciting.

 

She also showed me several graphs she had that included several types of antibody levels in Lyme, PANDAS, ADHD, and Tourettes. They were all very different......the only thing similiar with the Lyme and PANDAS was Cam K activation (I can't remember if one was higher than the other).....the antibodies present were very different at many levels.

 

Who knows! That is why I am so glad she got this grant and is researching this!!!

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Timecrunch because I have homework but I wanted to respond.

 

I DID have a positive Lyme test. That's the entire reason I'm pursuing this path. Some people have told me the first test gives false positives, some have told me it's hard to get a positive even when you do have Lyme. Some have told me that the second test has a 60-80% false negative rate, some have told me it is the most accurate. My point here is that yes, I'm reading all of what everyone is saying to me, but all it's doing is encouraging me to at least go see an infectious disease specialist to explore this more. From what I've read elsewhere the tests are hardly concretely diagnostic & since the majority of my time with Dr. G was spent discussing strep & my problems as they related to P.A.N.D.A.S., I'm just not comfortable accepting "Well the second test was negative so I'm done with you." It seems that Lyme is as, if not more, disorganized than P.A.N.D.A.S., so after hearing everyone saying completely opposite things (on here & in other reading) about both the tests & Lyme in general.. I'm just gonna go see a doctor. It's not as if that will harm anything.

 

Unfortunately enough there is not a single LLMD in the state of Texas & I agree with my Mom that the first step is not to seek out of state help, no matter how beneficial it might be to see an LLMD.

 

& I'm not throwing out P.A.N.D.A.S. My symptoms started before the tick bite but got exponentially worse afterwards. I don't really see how Lyme could cause P.A.N.D.A.S., but it makes sense that it would worsen it. Whether or not that's actually worsening the P.A.N.D.A.S. itself or just throwing in a new myriad of symptoms, who knows. I also think that we have to be careful about whether we're saying P.A.N.D.A.S. or PITANDs here. Is it not possible that if our antibodies are obviously already not doing their job right, what's to say that introducing a new, wild, invasive bacteria wouldn't elicit an unusual reaction from antibodies? Maybe not exactly attacking the Basal Ganglia & all of that, but I think that us P.A.N.D.A.S. kids, or maybe just me personally, can't trust our immune systems.

 

I'm glad to hear about Dr. Cunningham doing research!

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