Terrified.

[EmersonAilidh]

I had my bloodwork done the Friday before this past one. I thought it was weird that we hadn't heard from him since he said it would take three days, so I had my Mom call the office this past Friday. The nurse said Goebel would be calling us, & he didn't. All the while in the back of my head I'm thinking "Here we go again.."

But my Mom called back today & the nurse said that "something was abnormal". When my Mom asked what, she said that she couldn't say. She told us that the reason Goebel hadn't called us back yet was that he had been consulting an ID specialist. I don't think she realized that I know what an ID specialist is, & that I know everything I was tested for. The only infectious disease that I was tested for was Lyme Disease.

He's supposed to be giving us a call back before the "business day" is over, but, no offense to Goebel, I doubt that'll happen. So, for now, I'm sitting here absolutely terrified because I know just about nothing about Lyme other than that it's BAD. My tick bite was about five years ago (same time as major onset). Can any of you Lyme Moms fill me in a bit on what exactly Lyme is? As far as I know.. A tick bites you & everything gets messed up. I'm so scared.

[MMWG]

Okay, I just posted a reply but it disappeared. So here it goes again!

 

 

Please try not to worry. I am not an expert on Lyme, so I will let the Lyme experts help you with the specifics. However, as a mom, I wanted to make sure to reply. I actually think this is GOOD news. You worked hard to seek medical help, and now they have some information about why you aren't feeling well. If it is Lyme, that is treatable. Yes, it causes a lot of problems, but you are already experiencing those--pain, neurological symptoms, etc--having someone figure out WHY is a positive development. If you felt fine, and then someone figured out you had Lyme, or something else, that would be troubling. But you know you aren't feeling well, and haven't been for awhile. You have fought to have someone listen and help you--and I think you should view this information as a sign you were right. If this doc isn't an expert in Lyme, or whatever they see signs of, you will now know what you are dealing with and can find the right specialist. I think this means there are answers ahead for you.

 

Try to relax-don't be scared. Distract yourself as best you can, and as it gets closer to the end of the work day, I personally would have your mom call the doctor back if you haven't heard. You are entitled to know what is going on, and it is not good for your health to be stressed out about what they have found. Hang in there and let us know.-Meg

[Fixit]

just another mom dittoing Meg

[mama2alex]

Emerson,

 

Try not to be frightened by this news. I agree, this is good information that will help you get well. If your doctor had to call a Lyme doctor before he even called your mom, I'd say you need to go directly to a Lyme doctor yourself to get treatment. It can be very tricky to treat Lyme and you need an experience doctor. There is now a Lyme Disease forum on Latitudes - just look at the list where you usually click on PANDAS/PITAND, and its 1/2 way down the list. Someone posted that they were looking for a Lyme doc in Texas and someone else suggested she go on Lymenet.org - that might be a good place for you to start. You should post questions you have on our Lyme forum because many of the more knowledgeable Lyme/PANDAS moms are reading/posting over there.

 

Please keep us posted. You are such an amazing young woman - I know you will handle this latest challenge and get the answers/treatment you need.

[emmalily]

Infectious disease doctors can be consulted about strep and especially about mycoplasma pneumonia, too...had he tested you for those as well?

[EmersonAilidh]

I suppose the fact that we're actually finding things out is good, actually. Just wish the hits would stop coming, ya know? I've been distracting myself with drawing but it's a little difficult. After having seen such a horrible doctor for years I'm not used to actual progress, so it's a bit frightening to actually be presented with the possibility of something ELSE. I posted on the Lyme board! I'm trying not to stress myself out too terribly but it's easier said than done. I don't know much about Lyme, but if it's easily treatable, then by all means..

 

Emily, I haven't seen you post in so long! & yes, I was tested for Mycoplasma too but I seriously think that my respiratory system is the one thing that I've never had a problem with. It's confusing because a lot of the symptoms of Lyme, P.A.N.D.A.S. & Mycoplasma all kind of overlap.. & he said that he was expecting unusual strep results. I really don't think that the call would have gone the way it did if I just had some outrageous titers again.

 

It sounds a bit odd to almost hope for Lyme, but with the fact that I was bitten by a tick less than a year before my symptoms exploded & seeing what the other possibilities are.. It seems a bit like the lesser of three evils (Myco & even weirder strep being the other two) here.

 

We called the office back but I suppose we were too late. No one answered. My Mom promised to call until they told her something tomorrow while I was at school though. & if she doesn't, I will.

[emmalily]

Hi Emerson! I know, I haven't been on so much!

Myco doesn't have to effect the respiratory. I had very high IgG results for it and could only think of one cold in the last five years where I had respiratory symptoms, and those only lasted for a day. It's sort of like how you can have strep without getting a sore throat. Myco would cause PANDAS symptoms just the same as Strep, and some people are having luck just treating it with antibiotics. So don't get ready to hope for Lyme yet. As far as lesser of evils go, I don't think any are particularly better or worse, so definitely don't worry that something is bad is coming at you. Like everyone else has said, the fact that he called the ID dr. just means he found something and that means you'll be getting treatment soon, either way.

 

Glad you'll be getting some news!

[wornoutmom]

Emerson - the fact that Dr G was not only willing, but took the time to consult with the ID means you have yourself in good hands! It means he's not 100% sure how to interpret or treat whatever he found and is trying to get some feedback or bounce ideas off of someone with more experience or knowledge in that certain area. I understand the waiting to hear is awful. But you can rest assured that when you do talk to Dr G he has done his homework, and you are on your way to finding some answers and feeling better!!!

[EmersonAilidh]

Test came back positive for Lyme, but the western blot was negative? I'm going to call him tomorrow to ask what lab both tests were done through.

 

My antiDnase-B was only 85. I don't know about the ASO. He talked to my Mom, not me. I wasn't even home.

 

I am absolutely inconsolable right now. He said the words "Your daughter does not have P.A.N.D.A.S." to my Mom. As if it wasn't difficult enough getting support from her, now she has a doctor telling her I don't even have it. She said he didn't explain why, which I am REALLY interested in hearing since he expressed pretty clearly that he was not a fan of Beth Maloney & believed that titers were not at all diagnostic of P.A.N.D.A.S. "No P.A.N.D.A.S." means no Augmentin. No IVIG or anything else that I was secretly hoping for that could have made this year less Hellish than the last.

On the way home my Mom started her speech about how I was just depressed & I just lost it. I thought that this was going to be a better year, one where Dr. Goebel would actually help me & I might even get to, ya know, feel better.. Cos I don't even remember what feeling better is like. I had so much hope for this year. It's only the second week & I'm already falling asleep in class. But every single time that I felt bad.. I just imagined how great it would be not to be so anxious. How awesome it was going to be when I could take notes without dropping my pencil constantly. How amazing it would be just to feel fine. All I want is to feel better.

[EmersonAilidh]

Also, who do you schedule a PET scan with?

[EAMom]

Test came back positive for Lyme, but the western blot was negative? I'm going to call him tomorrow to ask what lab both tests were done through.

 

My antiDnase-B was only 85. I don't know about the ASO. He talked to my Mom, not me. I wasn't even home.

 

 

I'll let someone who know more about Lyme answer the question about the Western blot.

 

BUT...how can he say so definitively that you don't have PANDAS? surely you could have both PANDAS and Lyme, there are other kids on this forum that have both.

 

In any case, assuming it is lyme, I would think the antibiotics (at least some of them) used for Lyme would help your PANDAS.

 

Interesting about your low titers...not surprising since

1) you are a girl (Buster's survey found that PANDAS girls tend to have low strep titers vs. the boys)

2) if you are PANDAS, it's been going on for quite a while (pitands) and strep isn't really needed for symptom exacerbation

[GraceUnderPressure]

Emerson,

 

You do not have PANDAS, but you do have Lyme, so no, you haven't been proven to not know what you were talking about - just the opposite. You were right! You were sick with some kind of microbe that your body hasn't been able to clear - it just turned out to be a different microbe. You still need treatment for it, though unfortunately, you will probably have to find a Lyme dr. now. But at least knowing the cause gives you direction for finding healing! That's HUGE! Hang in there!

 

~Grace

[KeithandElizabeth]

Emerson:

 

Like Grace is saying, you have just discovered one of the microbes that is probably causing your PANDAS, or PITANDS, symptoms.

 

My son has every single PANDAS symptom listed on Dr. K's website and he also has lyme as one of his microbes and he is doing fantastic on the lyme treatment. And strep was the trigger for his PANDAS symptoms, but not dealing with the lyme appropriately was hindering him from fully healing. Lyme treatment usually entails multiple antibiotics (bactericidal and bacteriostatic) at one time and for long periods.

 

I think the most important thing you can do would be to find an ILADs doctor to help you navigate the lyme disease. Lyme can be tricky to treat because there are often coinfections and ILADS doctors are very skilled in treating all of the microbes, including strep and mycoplasma. Below is the ILADs website:

 

http://www.ilads.org/

 

Good Luck and keep us updated. Just remember that Dr. J in CT says that these kids always get better!!

 

Elizabeth

[EmersonAilidh]

UUUGGGGHHHH my post erased.

 

 

Here we go again...

 

EAMom - Just found out that my ASO was only thirtyeight as well. Third low titer ever. Go me. He seemed pretty adamantly against titers being viewed as diagnostic, as well as the P.A.N.D.A.S. Messiah *wink wink*, but he said that he was very selective in diagnoses. My only guess is that he said so because my titers were normal & he only diagnoses patients when they are "totally nonfunctional". Still a bit blunt for someone who's met me once, though. & I thought that about the antibiotics too!

 

Grace - I'm so confused though. The first test was positive. The second wasn't. He said he doesn't think that I have Lyme but my trust isn't exactly easily placed in doctors, & as much as I have read about the unreliability of Lyme testing on this forum the negative test isn't as concrete as one might expect it to be. Also, I found out that the first test was a Lyme AB Screen? I've never heard of that one. & the result was 1.16 H. This is what my Mom wrote down. I'm gonna see if he'll just fax me the results soon.

 

Keith&Elizabeth - I don't know much about PITANDs. I thought that it was just P.A.N.D.A.S. from a strep strain other than GABHs, am I wrong? & could you please explain the microbe thing? Excuse my ignorance here. :/

Are ILADs doctors knowledgable about Lyme as well? I was also tested for Mycoplasma. I'm assuming that no news is good news as far as that one's concerned, haha.

 

My Mom doesn't seem to understand why I'm honestly kind of hoping that the Lyme goes somewhere. Lyme is treatable!! & even though it doesn't seem to be totally accepted I can't imagine it being more difficult than P.A.N.D.A.S., which I've obviously done SO well getting treated for. If it was Lyme I could find a doctor & at least feel a little bit better. Also, I would't know, but it seems as though Lyme would be more accepted by schools.

Edited September 2, 2010 by EmersonAilidh

[sf_mom]

Emerson, I know there is hope in your diagnoses. Trust me, although I was preparing myself for the diagnoses of Lyme Disease yesterday there is nothing like getting the paper with your results listed. I don't think I heard a thing the Dr. said to me while at my son's appointment once those results came in for me. Thankfully, it was at the end of the appointment. Today I have had some time to decompress and now will get a plan of action together.

 

Per Elizabeth's post... find yourself a great LLMD. I was also told by our Dr. that children/kids do extremely well with proper treatment. Average length of recovery is typically two years. For my older son who has been treated aggressively for PANDAS he felt only another year.

 

Good Luck, Wendy