Suzan

Wonderful topic as I am always looking for new and better and to save $$ and take less pills! As you can see, I take a lot. Essesential (because I notice a difference if I stop): Buhners Core Protocol including resversatrol and andrographis (not taking cats claw yet but will soon) NSI Synergy 3000 (includes CoQ10, ALA, Vitamin D and maybe something else that I was able to stop buying extra of these things) Melatonin Essential (because this is what LLMD has me on) Transfer Factor (LymPlus and Multi-Immune) - Very expensive but is is suposed to really help raise CD57. I herxed badly when I started the lymplus Zithromax Flagyl Doxycycline Plaquinil - helps abx work better and move to hard to reach areas of the body and I think it's a cyst buster too Cholestyramine - bile binder Diflucan Nystatin Probiotic ALA (LLMD recommends specifically) but I don't know if it's helping. Helpful?: Chlorella Motrin Omega 3 5-HTP ( has been very helpful in the past, not sure if I still need it) Iron(because I've had low iron stores for years) Sarsaparilla (when herxing) For bad allergies Benadryl Zyrtec Flonase

Us too, Yes!

I know, I wish I knew if my dd was reacting to the lemon or the fish oil. She's also taken Coromega which has no lemon but she reacts to that too. She's also highly intolerant to flax oil so we can't take that either. It ry to give her chia seed but I run out of ways to get enough of it into her daily. Note: Coromega has Vanillan and I have often thought maybe she was sensitive to that for various reasons that I can't remember right now. But it may just be the fish oil Susan

I'm sure I've had lyme since I was a child. I was tested last year (age 43) and was positive. This was after a huge trigger and serious influx of symptoms. My two daughters, congential lyme, one was positive ag age 8 and the other had to be treated for 3 months before getting her positive test at age 9. If your instincts are bringing you back to lyme, I would check it out to rule out or rule in. Susan

I was wondering about Krill to since dd8 seems to have an issue with fish oil and I can't find a way to get her enough omega 3. I was just reading about this product tonight which the blogger (mom with ADHD child) recommended as her first choice. DD can't swallow pills though which is my main issue since the liquids all seem to be flavored with lemon which she can't have. http://www.fishoilbenefitsexplained.com/omega-xl.html Susan

I am looking for what zithromax dosages other LLMDS are giving your children. Specifically I want to see if dd8 is on a high enough dose. She's taking 250 mg daily. She weighs 55 lbs. She is also taking 1500 mg amoxicilin daily and not sure what dose of flagyl but that is only 1 day 2x a month. DD9 is taking 500 mg of zithromax daily but she weighs 88 lbs so maybe 250 mg daily for my little one is right. I actually think what needs to happen is that she needs to switch from amoxicilin to something else. We don't see her neurologist until July. I don't think I can wait that long to have someone check her out. I'm close to realizing I need to get her to my LLMD instead of having our neurologist look over her lyme care. If nothing else, the lyme doc reviews us every month where the neurologist makes his appts every 3-4 months. OK, now I'm just rambling. Someone make it all better ...lol, just kidding

When I was 17 or 18, I went through a period of time where the food would start down my throat before I was ready. It was like I didn't have control of my swallow reflex. It was a very upsetting time especially since no one took me seriously. I wonder if that is related? Shaesmom, that's the best part of all this, besides getting well, is helping others find the connection so they can get help too. Susan

I am so glad you guys got tested! I really hope that treatment will help her EE quickly. When do you see the LLMD again? You are doing to a new one in June right? I always say you don't want to have lyme but if you do you really want to know about it so in that way I'm glad for you guys. Susan

SmartyJ, I am looking into this again for dd8 but in reading up on it today, I read that one of the symptoms is Nystagmus (involuntary eye movement) and this is one of the things that caused dd9 to have to get an EEG last week. Do you use a probiotic that is d-lactate free? If so, what do you use? Or what do you do for probiotics/gut health now? Thanks, Susan

Here's our update on dd9. All blood work and EEG came back normal. Yesterday she came home from school and said she had a really good happy day and she felt almost back to normal (pre episode from almost 2 weeks ago). I have a question out to the neurologist about what next, does he have any other ideas, but now I am assuming it was a lyme herx or lyme symptoms and we just continue on as we are and see what happens. I have asked if it's possibly time for a medication change. I don't know what else to do. I am going to try to up my detox efforts with her. Susan

I have a similar experience where I saw a bullseye rash but I can't remember if it was on me or one of the kids. I think it was on me since I would have had a stronger memory if it was one of the children. We spent a lot of time in CA in the mountains and I had tick exposure there but also spent time in North Carolina as a child too so I don't know where I picked up lyme, but I think it was probably CA. Regarding testing yourself, if you are not sick now and money is an issue (hard not to be!) I think testing your daughter only is fine to get her diagnosed and treatment started. But your tick exposure and a sick child does make me wonder about you. If you test her first, you will realize whether you want to test yourself later. The main thing is that you want to be well enough to take care of her if she does have lyme. I tested my dd9 first and was going to wait to see what happened but then I got very sick and realized I probably had it too. Anyway, I'm not an expert so you may get some other ideas about why it would be a good idea to test you first. Have you looked at any extensive symptoms lists for yourself? When I did that, I realized how many symptoms I had that doctors told me were related to other things or independent conditions. Susan

Does she have allergies? We are triggered by allergies here and I notice more symptoms during high pollen season. Our Dan! doc also says that he sees negative behavior increase in almost all his patients during this time as well. If you are not alredy giving allergy medication, you could try to see if it helps. I know some kids react poorly to allergy meds. My dd8 takes allegra and dd9 takes zyrtec and they both take benadryl. Also, I totally understand what you are saying about patience decreasing as symptoms improve. I struggle with that too so you are not alone! Susan

Does she have allergies? We are triggered by allergies here and I notice more symptoms during high pollen season. Our Dan! doc also says that he sees negative behavior increase in almost all his patients during this time as well. If you are not alredy giving allergy medication, you could try to see if it helps. I know some kids react poorly to allergy meds. My dd8 takes allegra and dd9 takes zyrtec and they both take benadryl. Also, I totally understand what you are saying about patience decreasing as symptoms improve. I struggle with that too so you are not alone! Susan

Yes! Yes! Yes! I was thinking of posting some milestones today because I have been feeling very down lately about our treatment. But it's just because things are kind of either in a rut or very aggrevated right now. dd9 and I are much better since starting treatment. In October when we went to our first LLMD appt, my brain fog was so bad that I was worried I would lose my job. I had muscle twitches all over my body and I had no energy and a lot more pain. Now I very rarely have any muscle twitches. My mind is mostly back, I can think clearly. I don't feel lost all the time. dd9 is much more sane, much less OCD, sleeps in her own room now and not in my room. Has fewer fears. Appears normal to most people. Has much less pain. dd8, not much change but she has been on treatment for only 3 months maybe. She seems to be a little more complicated. I wonder if she has other things in play that we don't know about. Or it just needs more time. She's not worse for sure only not much change. We still go up and down, have good days and bad days. But before we started lyme treatment, every day was bad. Susan

It makes me wonder if a doctor like Ann Corson who seems to know so much about pediatric lyme, would be interested in hearing from us as a group. I think we are still having good progression with dd9 but dd8 is not improving as I would like to see yet. Maybe there are different protocol that would help the pandas/lyme kids who are not getting better. Anyway, just something that popped into my mind.... Susan

I was very afraid to give this to her due to all the feedback that I received from other pandas/lyme moms and their experience with it. I finally tried it out of desperation one night and it worked. I only use it as needed and I try to wait until I see that nothing else is going to work. dd told me this morning that she could feel her anxiety washing away after taking it last night. Maybe we are just the very few who don't have a bad reaction? I don't know but it might be worth it to see what the doc says and maybe give it a try although I would hate to recommend it and then have a bad reaction. Susan

HUGS! You can also do the melatonin and benadryl if you have not tried to give both together. What dose do you go to with the melatonin? Last night, d9 could not go to sleep after benadryl and almost 5 mg of melatonin because she was having bad thoughts and a lot of anxiety about what would happen if she could not go to sleep. I finally got out a tiny portion of Lorzepam which we have for her anxiety but don't use often. I put her in bed to read and that was the last I heard so not sure how long it took for her to go to sleep. HUGS again! Susan

Happy Mothers Day to all! Susan

The doxy really has seemed to bring me some new energy and good mood. I can tell it's helping. But as time goes on, it just really upsets my stomach and gives me diarrhea. I take with food and drink water and take VSL#3 probiotics , usually 2 a day along with a couple of lower dose probiotics. I just don't know how long I can take all this gut upset. Anyone have any suggestions? How long until I decide I can't take it? If I can't get used to it, I can't imagine going on this way for months. I think my LLMD expects I would be on this until improvement stops and we taper off abx, however long that takes. I also get weakness in my arms, but I think that's a herx. Susan

I forgot a few other things that have helped us through the hard times, a heating pad and a portable Far infrared sauna. The sauna helps with detox and also helps work through a herx. The heating pad just feels good and our LLMD recommended it to get through any painful herxing. I just noticed tonight that I don't feel like I need to sit with the heating pad every evening any more. I got in the sauna today and sweated a lot and I feel better already. Susan

We give bentonite clay mixed in juice every day. I'm looking into Chlorella but have not tried it yet. We had herxing and worsening of symptoms. However, the overall experience has been one of improvement. There have been one or two weeks at at time of feeling really bad but then it opens up with an improvement. Then something else will flair up but it's not as bad since there is improvement elsewhere. Just getting my brain back in the begining was enough to know I could handle it. My dd9 was the same way. She had a very quick improvement on her emotional state so it helped us get through some of the bad physical times. Now, 5 months into treatment, she is going through another hard time. But it has not been constant. I guess there is no way to know how your dd will respond. I just hope that your experience is similar to ours where you get some good improvement which will help you deal with it all. My dd8 has not had much improvement but her sympotms are so different than many others here with seizures and heart abnormalities. I don't know if that makes her healing look different too. She has food related ODC and she seems adhd, and high functioning spectrum disorder at times. Susan

Our one experience with a psychologist/psychiatrist was not helpful at all but he admitted to not knowing a thing about pandas. Our lyme doc did prescribe lexapro for dd9 for her anxiety. We give a very small dose and only when she is out of control. It seems to help us a lot in the few times we've had to use it. I don't use it on a regular basis out of fear and it's nice to have something to use in emergencies. Finding a good fit I think is the only way to go and not the easiest thing to find. HUGS! Susan

OK, sorry to keep posting our updates, LOL but I figure I'll keep you posted. Neurologist and acting lyme doc has ordered some tests which include ASO and antiDNASE, crp, cbc and I have the rest written down at work. Then he's ordering an EEG. I think he feels that she has had a seizure (he is a neurologist so this would be something he'd want to rule in or out). dd9 failed to tell me that she also had this thing on monday after her period of confusion with her eyes where they shake back and forth which he was concerned about before but since it was only accompanied by confusion once he let it go. Her brain has been hurting (different from a headache). So I already have one kid with seizures so now I'm a little freaked that I'm ending up with two kids with seizures. Her pain is gone but she's still not right in the head. susan

Today she has less physical symptoms but is an emotional wreck. I have sent her to school and called the counselor to check in on her today. I had the thought this morning that she is staring puberty so maybe this is the beginning of a monthly cycle on top of not feeling well. UGH! Thanks for the support. I am still completely confused but time keeps passing and I know things will change. Susan

My dd8 loses her taste buds when she is not well. This is one of her primary symptoms. She will start to only eat one thing for all meals and will have a hard time figuring out what to eat. She will often start to eat what she thought she wanted and realize she can't eat it. It gets worse when she has strep or is sick with any virus but it is a constant underlying thing with her lyme. I hope it gets better with treatment. Susan