FallingApart

Way back before we had any idea what was going on with DD, we gave her some sort of low dose psychiatric drug - like a sedative. I don't even remember what it was. Like most of you, she had the reverse reaction and life got really rough. That was pretty much the last time we gave her anything pharmeceutical to help her brain. When we get the results of her SPECT scan today, I'm expecting they will recommend that we use some sort of SSRI or other drug. Now, it's been 2.5 years since all this started and we have done a ton of work for DD biologically. I do believe we are in a different place today than we were then. DH and I are also open to doing anything at all to help our daughter and the rest of our family improve. However, we are still terrified at the memory of our one experience way back when. How many of you have added an SSRI or other drug as time has gone on and you have treated infections? What was the reaction like? Or if you haven't yet done it, are you considering it or are you open to it? Thanks so much!

Hi all, The past month has been filled with turning toward the health of DDs brain. This led us to learn about SPECT scans. We are on our third day of 3 days of testing and today we will get the results. I fully expect to walk in and not learn anything too new about the status of DD's brain. But I'm just wondering if anyone else has done this and if it yielded anything great for you. I guess my post sounds strange...if I don't expect to learn anything new, why are we doing it? DH and I are indeed hoping to learn additional things that we don't yet know. It is just the areas of rage, lack of empathy, etc, that won't be new to us....

The neighor's dd must be a strep carrier. Our dd can identify any strep carrier based on the exact symptoms you are describing. For us, the strep carrier is grammy. We have finally gotten to the point (for now) that grammy can no longer come to our house. I can't deal with another person's visit being the reason why our dd gets set off. For us, it seems that if dd plays with a strep carrier OUTSIDE only, things will stay the same. But when they share enclosed space, ie: your home, the disaster sparks. I hope today is better for you!

This is very interesing. I believe our LLMD said that DDs tonsils were enlarged. I will be sure and ask her the next time we see her. For those of you who have gone ahead with the removal, have you seen an improvement in PANDAS symptoms? I believe I saw that one of you said you did, but I am curious to know if others have as well. DD has never really come back to herself since any of this has started. She still never seems actually sick, but is always off. We have been having more "good" days recently than ever before, but the "bad" days are never far behind.

Sorry if this has been asked a bunch before. Do your PANDAS/Lyme children still have their T&A? Our Pandas/Lyme DD has never had a positive strep culture and our ped doesn't think that removing her tonsils would do anything since she has never had an infection. But after looking through some of these posts, I can't tell if this is correct thinking or not. I know that it seems that the kids are 50/50 on whether they get strep or not, but what is the status of their T&A? Thanks!!

we did PEX for DD back when we thought she only had PANDAS. It was a disaster. When we did it, we didn't realize we were living with a strep carrier and we brought DD home to an active strep carrier state in her sister. She fell to her lowest level symptoms-wise ever. It took her MONTHS of IVIG to recover. Hindsight is a different story, but I would make sure you have a very healthy immediate family before you consider PEX. I know it does wonderful things, but it was yet another trauma for us.

Since starting down the Lyme road, we have been learning about a lot of new supplements. But one that rings a bell around your situation is NAC. The article I read sais that NAC helps with the following: •Fighting the flu •Chronic bronchitis •COPD •Oxidative stress and a potent antioxidant •Alzheimer’s disease •Obsessive compulsive disorders •Addictions •Schizophrenia •Bipolar disorder •Endurance and muscle fatigue •Detoxifying health metals •Kidney health Here is the link to the article: http://factoidz.com/the-health-benefits-of-nac-nacetyl-cysteine/

Wait! I've thought of you so much over the last 2 years! I thought she was better! This is disheartening to see your post here. I'm so sorry for you and your family! Have you been posting all along? Can you update us on your story?

Do you take this all the time or just when you are having a herx? What amount do you take as an adult and what amount do you give your child? Thanks so much!

I never realized that about the lack of fever! But we have it too! Both DD and I have never had a fever that I can remember! Elizabeth, your story gives me so much hope. I have been on this board with you for what seems like forever and I am thrilled to read your report. ART is Autonomic Response Testing. ART is a highly effective, advanced technique of biofeedback muscle testing to determine imbalances in the body, their root causes as well as potential remedies. from http://www.drkatharina.com/nutritional-medicine/ This has been enormously effective for our family. You are unlikely to find an MD who will do this although I would think that a good LLMD would do it. I agree with the pp that this is imperative in healing our children and our families. It's what has kept us out of the hospital and from doing our monthly IVIGs for PANDAS.

This is my exact question. I don't have an answer only our current experience. We let grandma come to our house even though she is a known strep carrier. In the past DD has reacted violently almost immediately. This time, it took 4 days to see anything. After 4 days all PANDAS symptoms resurfaced and we thought for sure it was a flare. Once grandma left (she will not be welcome here again util if/when this ever gets resolved) we treated DD the way we usually do to no avail. Over the past 8 months we have treated DD homeopathically whenever she is exposed to strep and somehow she magically gets fixed. I am shocked but thrilled to have found this. However, this time, it didn't work. We tried 3 different doses and nothing. We just returned from the homeopath a few hours ago where we gave DD a completely different remedy and I can't quite tell if this one worked, but I do think I'm seeing a positive change. Based on all of this, I'm going to call this a herx. That is scary as he!! to me because this looked IDENTICAL to a PANDAS flare. My adrenaline never seems to come back to normal. How long is it going to take for this herx to end? My nerves are shot and I am hanging by a thread.

Tampicc, I don't want to scare you, but I did want to comment on your post about the eye rolling tic. Our DD who has PANDAS and Lyme has eye rolling as one of her tics. It is the one that bothers me the most which is why it stands out to me. I also have 2 children and live in fear that this can/will happen to the second, so I am hesitatnt to bring this up to you. But the eye roll in our family is always a bad sign. I hope it's not a bad sign for your family.

Can you get a herx after being on the same meds for 5 weeks? DD had only the most mild of reactions to starting her Lyme meds so at our 1 mo checkup the LLMD kept the meds consistent. As I mentioned in my last post, my mom, who is a strep carrier, was visiting us and 4 days into the visit, DD had a PANDAS-like reaction. Tonight was so sad for me. We had to pretty much knock her out to snap her out of he downward spiral. As I was tucking her into bed, she was ticcing away and my heart was breaking. It wasn't until that point that I started to wonder if this could be a herx rather than a PANDAS flare. The timing of this caused us to believe it is PANDAS. But, I guess the main question is whether a herx can come on later like that?

Hello, Some may know our story, some not. In short, we have 2 children 17 mos apart. The older is the PANDAS/Lyme child. It took us 2 years after the onset of symptoms to discover that the younger daughter was a strep carrier. We successfully eradicated younger DD's strep in November 2010. But, things are never easy, are they? Through observation, we have observed that my mom is also a carrier. However, her GP isn't PANDAS savvy and isn't likely to prescribe rifampin and clindamycin together when she doesn't test positive for anything. For the first time in 3 years, DD was trending upwards and life was flowing somewhat steadily. Then my mom came and boom, DD went nuts. Now, if I want to be rational, this time it's not as bad as it has been in the past and the exacerbation took a lot longer to come on than it has in the past. So I have 2 questions. Have any of your PANDAS/Lyme children been this bombarded by strep since starting Lyme tx? If so, what was the initial journey like? Also, my terrifying question is: do any of you have a carrier in your house that you successfully erradicated, only to have the carrier state return? I'm slightly concerned that younger DD could possibly have strep again. Needless to say, my name fits me well tonight.

Hello, Some may know our story, some not. In short, we have 2 children 17 mos apart. The older is the PANDAS/Lyme child. It took us 2 years after the onset of symptoms to discover that the younger daughter was a strep carrier. We successfully eradicated younger DD's strep in November 2010. But, things are never easy, are they? Through observation, we have observed that my mom is also a carrier. However, her GP isn't PANDAS savvy and isn't likely to prescribe rifampin and clindamycin together when she doesn't test positive for anything. For the first time in 3 years, DD was trending upwards and life was flowing somewhat steadily. Then my mom came and boom, DD went nuts. Now, if I want to be rational, this time it's not as bad as it has been in the past and the exacerbation took a lot longer to come on than it has in the past. So I have 2 questions. Have any of your PANDAS/Lyme children been this bombarded by strep since starting Lyme tx? If so, what was the initial journey like? Also, my terrifying question is: do any of you have a carrier in your house that you successfully erradicated, only to have the carrier state return? I'm slightly concerned that younger DD could possibly have strep again. Needless to say, my name fits me well tonight.

Thanks for your replies. This might be a helpful post for all families going through this and now I can add to it as well. Pretty much right after I wrote this, I did see a herx for myself in the form of joint pain and skin issues. But I also have seen subtle positives as well - more energy - I didn't really realize I didn't have energy - I attributed it to the horrendous PANDAS situation that we live in, and DH says I have more smiles and I even gave up wine for Lent. But the big one that can't be denied is around my Bells Palsy. I still don't have a face, but just tonight I noticed that my nose is not leaky for the first time in 5 years. I think this is a big thing!!! I'm not too particular about what I see, I just want to see something and now I have. I love reading all of your stories. I think it would be terrifying to see your child get Bells Palsy. It was so scary for just me, until we identified it. I'm glad his resolved!!!!

Like most of you (I'm guessing) we have multiple doctors. Our LLMD is an ND, but before we found her, we were also with a an ND. So we are actually seeing 2. The general ND is who recommended the OBGYN. THe reason the neuro issues overshadow every appt is because they came on 4 days before I deliverd my PANDAS/Lyme daughter. All MDs think this is fascinating and spend about 4 appts trying to "fix" me until they realize they can't. Hence, why I don't want to bring it up at all. But since this is the OBGYN and my symptoms all started during pregnancy-I would have to fully just leave that part out. I like the way you stated it. I just don't want this to turn into a discussion of my having a bunk disease that is being treated incorrectly. I'm a bit tired of that. I really don't mean to sound so negative at all. I'm actually feeling hopeful for the first time in a long time. I'm hoping you all know what I mean...

Hi there, I am meeting with a new OBGYN today. I've never met her, but our naturopath recommended her, so she is likely somewhat open to "things". However, she is an MD. When I fill out the new patient form, do you think I should include the Lyme stuff? I'm not sure I really want to get into this with her, esp on the first visit. Knowing that she isn't going to give me drugs, is there any reason to tell her about it. For the past 5 years, my crazy neuro issues have taken the spotlight of every doctor's visit I've had. So much so that I don't even have a GP right now. I think this is why I'm hesitant to share this. What have you all been doing?

Are there actual standard protocols? My most obvious symptoms have been odd neurological issues presenting as "Bells Palsy" - but so much more. So the 2 prescriptions I am on are Valtrex with Doxycycline. Plus some other supplements for vessel issues. But are there actual standard protocols where someone would be on the exact same thing? If you haven't seen a huge improvement after 5 months, how long do you plan to do this for? I ask because of the cost of all of this. I won't stop any treatment for DD, but I will start to question things for myself months down the road. I'm glad to hear that you def saw something noticeable at certain points throughout the treatment.

Hello, Currently we are treating DD and I both for Lyme co-infections. I'm wondering if you can share your experiences in what you have seen in terms of changes when starting the protocols. I've been so hesitant to admit this, but both DH and I feel that DD showed an almost immediate improvement once she started her meds. It's not overly drastic, but it is noticeable. (I wish there was some wood in the internet that I could knock on ) But, as for myself, I don't feel I have noticed anything at all. Neither good nor bad. Since I can talk and I am aware of what's going on, I am clearly a much better gauge than DD is. I have not been on my meds as long as DD - only 1 week for me. BUt I am surprised to feel absolutely nothing after watching DD have both a positive and a negative reaction. So I was just wondering what you have seen in your experiences.... Thanks all!!

That doesn't sound good to me. My oldest(DD5) is the one with PANDAS/Lyme, so I have never really gotten to experience true "stages" to know what might be typical. My second child is the most easy going child in the world (thank God) so I can certainly understand your uestioning whether it could be a stage. But I would say 2 things. Your instinct is right. If you think this is odd for your child, then it is odd. Go with it. The other is that everything you describe is a red flag to me. The separation anxiety is the only thing missing. Thankfully you have been through this once and are already with a practioner, hopefully one you trust. Hopefully it will be easier with the second child. I'm so sorry this is happening to your family. I can really not imagine having the energy to do this again. Our LLMD assumes our easygoing younger child also has Lyme. Thankfully she is not pushing us to pursue it yet. I'm so out of energy.

Is it safe to assume that most if not all on this board are also dealing with PANDAS? I got our ped to write an RX for the VSL packets and I picked them up yesterday. I was so excited and thankful to have this portion of the treatment under insurance. THen I see that the first ingredient listed is S. THermopolis. I belive that some of you are using this or have considered it. Can you tell me your thoughts on using such a potent probiotic with strep in it if you have a PNADAS child? We are currently using HLC Child which is miniscule in comparison to the potency of the VSL but it doesn't have any strep in it. I did not give the VSL packet to my PANDAS DD because I am too scared. I gave a small amount of it to my strep carrier DD but even then I'm concerned. I think scientifically I have no reason to be scared, but I still am.

I got my test results back today as well, and I am positive also. My actual Lyme was technically negative, but I had IND for 39 and 83-93. I was also positive for ehrlichiosis. The strange thing though, was how horrible the rest of my bloodwork was. I was deficient in everything we tested for. I was floored to be told that I was actually sicker than DD. Floored!!! I've spend no time on myself other than to get through the day and was shocked by this. Our ped wasn't surprised that my tests were so deficient because she has thought all along that DD got this from me. It is a nice feeling to think that we may have found some of the answers. We'll see where we go from here....

From what I understand about the symptoms of Bartonella, YES, YES, YES, it is definitely a clear case. My understanding is that PANDAS and Bartonella present similarlly in terms of psychiatric symptoms? Or at least that is how it feels in this house. So, when the test came back positive, I rejoiced. Now, I'm still waiting on my own test results. I've already been tested for Lyme at some point and it was negative. it wasn't through Igenex, but I don't know what the test was. Just remember a negative does not mean a negative. What is your doc saying about your child?

I have one. She is 5 now. But I believe she has congenital Lyme and also is diagnosed with Bartonella. She first showed symptoms at 9 days old and things got worse from there. Our main onset of extreme symptoms was at her 3rd birthday. Things have never let up from there. We have just been diagnosed with Lyme. Although the Lyme diagnosis is not exactly accurate yet. The Bartonella is the one that is fully accurate at this point. I'm still learning.