FallingApart

Hello, for anyone who is not familiar: DD is 6yo - PANDAS onset at 3 yo discovered Lyme/Bart approx 1 year ago. Has anyone considered that their child may show signs/symptoms of Reactive Attachment Disorder? I strongly believe that DD had PANDAS/Lyme first and that is the main and underlying issue. However, DH and I are now considering that DD may be showing signs of RAD and it would be the secondary disorder. THe first 3 years of DDs life were "normal" until all her hospitalizations for IVIG and PEX. I'm just wondering if anyone else sees signs of this in their child and if they are also treating for this issue. THanks so much FA

we were instructed to do 15 drops of each bottle in the kit for both DD and myself. For DD i put it in apple juice. for myself I just put them in water. I think we were instructed to do them twice a day but were unable to do that on most days.

We do a LOT of ACV over here. I would love to hear where you are at now compared to where you were with your last post. W have seen amazing results and I attribute it almost entirely just to the ACV. The thinking behind it is that most of us are too acidic and the ACV helps to reverse that. (I may have that backwards, I'm not fab at science ). However, there are a very few people that are actually already alkaline and therefore don't need the ACV. If your daughter is one of these, that might have Ben what you are seeing in the reaction. For anyone who is new to ACV, there is a book on it by Bragg and it is very helpful. Also, if anyone suffers from migraines, it is a lifesaver. I hope your children re doing better than at your last post!!!!

Hello, Has anyone had their hair start to fall out since discovering they had Lyme or a co-infection? I actually have taken a break from Lyme treatment and have been off abx for about 2 months or so. But I also see unexplained hair loss is a Lyme sign. Anyone else had this? Were you able to do anything to reverse or stop it? Thanks so much!

philamom, that makes me so mad for that mom! What is she planning to do? No, they aren't wanting to do the spinal tap for anything related to the BP or Lyme. This is my regular Neuro. I have such severe migraines and they can last up to 6 weeks. I was hospitalized for 2 days with the last one for continuous treatment and even that didn't break the migraine. THey have considered me for MS, Lupus, menengitis, and an anyuerism. With each one they have want to do a spinal tap. I'm not planning to pursue the BP or Lyme any further with the Neuro, I am just v interested in this discussion. THanks so much!

So, two inputs here: I was actually in the hospital when my BP came on and was treated absolutely immediately. And I am one of the lucky few who has not recovered!!! So, I don't know that you can say that quick treatment necc helps. Hopefully it will for others but it didn't help for me. I'm still hoping it may come back but it has been almost 6 years!!! . I can't believe you all know so much about BP. YOou are a wealth of knowledge that I was unfamiliar with and I thought I knew a lot about BP. Can the pp who said something about Lyme being in the blood and/or spinal fluid elaborate on that? I have other neuro issues as well. We have considered doing a spinal tap on me 3 or 4 times but have never done it due to scheduling problems (2 young kids and no family around to help out). What else should I know? Thanks! FA

Here is my input. I tested positive for Erlich myself. I'm not a child so perhaps it's different for me. But I would not characterize myself as neurpsych. My issues are primarily neurological. The issues you describe sound to me to still be related to the Bartonella.

yes, it was. I did use it and it worked until I could get to the store. But, here is the real reason why I wanted you all to know about the site. Some of you know our story. Our non Pandas/Lyme DD (who actually probably has Lyme, just hasn't been tested) is a strep carrier and keeps triggering the Lyme PANDAS daughter. We have had the carrier daughter on antibiotics for 2 years and even did the clinda/rifampin to eradicate the strep. Since then she has been on daily augmentin and then got strep through that. So, I came to the realization that abx weren't going to be ab;e to help us solve our problem. I studied that site for 36 hours and read everything I could. I have been doing a series of apple cider vinegar tablets, sea salt soaks, elderberry, and a very diluted H2O2water drink for everyone in our family. I've taken the carrier daughter off the abx b/c they aren't doing anything for her anyway. It has been 2.5 days since I first started this and people are truly happy in this house. Now, those of you who know me know that I din't think I have ever written that statement. I mean, look at my sign in name. So, I wanted everyone to know about it and see if it can help any of you.

Since you have moved over to this board, you are most likely familiar with supplements and herbs and possibly folk remedies. I came across this site a long time ago for a wart on my foot and the advice worked. I just came across it again when trying to break my 3 week long migraine. It has a section for Lyme and a million other conditions. In the past few days, our family has tried a few of the remedies and had great results. I wanted to pass it along in case you don't know about it. http://www.earthclinic.com/

Hi again, I thought that we had eradicated strep from our strep carrier non-pandas DD almost a year ago. However, just tonight, I tested her and she has strep. This is after she did a round of clinda/rifampin and has been on daily augmentin since. Poisitive through all of that. Does anyone have any other remedies to try? Or has this happened to you? What did you do when your once "cured" carrier came back positive? Do you have any folk remedies? Herbs? Anything at all? Nothing is out there for me. If it has worked for you, I need to hear about it. Thank you so much!

I feel like an idiot! I did not have any idea that there was a specific timing around the chlorella. Are you sure about that? I understand with charcoal that there is but I don't remember our LLMD saying anything about the timing. Does anyone know for sure?

Thank you so much for your story! That is very helpful! Your story sounds a lot like ours, but ours happened at 3 years of age and was sudden onset as well. What protocol did you mainly use or did you switch around regularly? Thanks so much!

Mama2Alex, I just saw your post that you said you may have moved beyond Bartonella with your child. This gives me great hope! That post rings very true with how bad things are and get at our house so to see someone who may have moved past it is a wonderful thing! Can you tell us if your child was as hard hit as the rest of ours? And what state is he in now? I'm sorry if it is hard for you to recap, it is just a ray of hope for the rest of us!

Hello, Both my daughter and I have been experiencing a fair bit of vomiting over the past month. Since I'm not in her body, she is the one that concerns me the most. She has had one vomit/week and they have all been in the middle of the night. She has been on the same meds for over a month and is not allergic to them. We had our LLMD appt today and she was examined and appeared quite healthy. We kept all meds the same. I, myself, have felt terrible for about 2-3 months and nausea and some vomiting have been a part of that. But now that it extends to my daughter, I'm wondering how many others have experienced this regularly? I don't know why this surprises me, but it does. Can you describe a bit of your experience so I can try to wrap my head around this? Thanks so much!

I don't understand the question. However, I have Bells Palsy. I've had it for 5 years and have not seen a change since starting treatment about 4 months ago. The BP coincides with all of my other neuro problems as far as when this all began for me. And coincidentally it was during my pregnancy with my PANDAS/Lyme DD. Can you expand more on your orig question?

I'm glad to hear that the abx made some things better. As for making other things worse, have you tried the charcoal and/or epsom salts? It is very hard to wait it out, that's for sure!!! Does your psyciatrist take insurance? I would also like to see a LL psych, but the one I found doesn't take insurance and I am running out of money. Just wondering if all are the same. I'm guessing yes.

Just to chime in, this has happened to me as well. Not quite as bad as what you are describing, but annoying nonetheless. I've been wondering what has caused it as well. Thank you for the suggestion sptcmom, we have tons of turmeric over here!

We are currently in a pulse mode for abx and are entering 1 week off for DD. As I mentioned yesterday, she has been in a 3 month long "situation". I'm glad to see that it is not just my child. But I am putting my thinking cap on and am betting that toxons are playing into the reason for the herx. If I have 1 week off of abx, what can I be doing for her to help wit hthe toxin load. We also just found out that DD is severly constipated. She is currently taking chlorella and eating a lot of apples. Plus using homeopathic drops for her liver and kidneys. Now that she isn't on abx I will be able to give her charcoal and a lot more probiotics. But are there other suggestions that I might be missing?

Hi there, We are seeing an LLMD that I feel quite comfortable with. However, we are also seeing other practitioners for other things as well and I am also comfortable with them in their area of expertise. In the past couple of days, it has been brought up that perhaps DD and I should be farther along in our progression through the Lyme journey. Our LLMD will not give us a clear answer on if or when we will be better. I understand her point of view, but I have been in bed for the past 4 days with nausea and vommitting and am starting to wonder if I am just paying large amounts of money to feel even worse than before we started seeing the LLMD. Other practitioners have weighed in that one is never cured of Lyme and you only learn to live with the disease. Even though I have never met any of you, I trust you all. Can you tell me where you are regarding your success level with Lyme treatment? DD got better for the first month and has since been in a 3 month funk/herx/whatever. She has just been a bully and v difficult to be around. I do still believe strongly in what we are doing, I just need some reassurance.

Well now I am confused. I understand everything everyone is saying - I think. And it makes sense to me. But then, does that mean HD IVIG is a good idea or a bad idea if it has worked in the past? It has been about 10 months since our last IVIG. DD is deteriorating by the minute or so it seems... I am going to wait to make a decision though, because we are to start a new abx round this afternoon. However, I expect this to actually make her WORSE for a few days before she levels off!!!

we are starting biaxin tomorrow, now i am scared! What did you do in place of biaxin if your child couldn't tolerate it?

I should add, though, that in her most recent bloodwork she did not have elevated strep titers. Most of the times that we have done IVIG in the past, her strep titers have been elevated.

I am not on Tindamax, but rather Minocycline. But for the past 2 months I have been starving to death. it is exactly as you describe. I mostly want carbs and fats and I don't know why this is happening or how to start it. My LLMD wants me to do the 3 hour glucose test because she thinks I may be having a glucose intolerance problem caused by the Lyme.

Hello, Can you let me know your thoughts on doing IVIG once you realize your child has Lyme? Our DD has significantly benefitted from IVIG in the past but the results have not been longer than a month. DD seems to be in an almost 3 month long herx now and I am wondering if IVIG could possibly be helpful to her during this time. I'm worried that the animosity in our house is doing damage to her psyche. I don't know if IVIG is used as much with Lyme as it is with PANDAS. Thanks so much!

DD has been on a prophyllactic dose of Augmentin for about 2 years. I don't know that this is making our lives better, but everyone is too scared to take her off the Augmentin to find out. When DD was diagnosed with bartonella, the LLMD initially wanted to take her off Augmentin and proceed with the antibiotic cocktail for Bartonella. However, even she became too nervous to take DD off the Augmentin. (We have a strep carrier in the house. We believe we have eradicated the strep from the carrier, but how do you really ever know?) I keep reading that by treating the Lyme and co-infections that you might also be treating the PANDAS. How many of you are still treating the PANDAS as well as the Lyme? Just today with the SPECT scan results it came up that perhaps it might be a good idea to take her off the Augmentin to let her gut heal so that it can better absorb the supplements we are giving her. This is the first time in 2 years that DH and I have even considered taking her off daily Augmentin. Any thoughts?