Suzan

http://www.n-e-t-s.org/Shea-Leventhal%20Role%20of%20Neuropsych%20Testing%20LD.pdf Has this been posted here before? I found this useful last night when I was searching for information on my dd8 who is falling apart. We have one neuropsychologist somewhat near by but not covered under insurance in any way. Anyone had an evalutation for their kids? I was worried about the school and was getting prepared for updating our 504 plan but after a talk with the principal today, I think we will be OK with what we have. They have seen such great improvement in dd9 that they are happy to work with dd8 to get through these rough times. Phew. Susan

A quick note from me regarding IVIG. Igenex told me to wait 4 weeks after IVIG. I was just under 2 days of that 4 weeks when we got dd9's blood draw. Her first test was IND but suggested lyme. I always wonder if the IVIG screwed with it a little but there's no way to know. Even though she was the sickest of us at the time, maybe she was not mounting a response until later after some treatment. BIG HUGS from me. Susan

Her back is almost better but now she has a bumpy, itchy rash on her left arm. She got in trouble for hitting, kicking and biting at school today. She's falling apart, crying that the dog will die someday, completely inflexible and needing to have her way. I'm going to school tomorrow if the counselor is there to talk about her 504 plan and to see if there is any strep at school. This is her second offense of breaking school code of conduct. I'm not sure how many she can get without being suspended. She's on so much medication. I don't know how I can tell if it's lyme or candida or her seizure meds causing any of this. She takes one threelac a day for candida, caprylic acid, 1 tsp swish and swallow of nystatin daily and a diflucan one time a week. Maybe I need to be doing more for yeast. Also on (none of it is new): Depakote (seizure meds) Zithromax 250 mg 3xweek Amoxicilin 1500 mg daily Flagyl (2x a month) Allegra daily Susan

My LLMD says this can be one of the last symptoms to go but I have found after 5 months of treatment, I am not as sensitive to light all the time. Things I've thought about to try to combat the bright lights at work - sunglasses, huge brimmed hat or visor, umbrella, constructing a fake ceiling over my desk, LOL. The umbrella was the best but I decided I didn't want to be the crazy umbrella lady at work. Good luck, it WILL get better. Susan

Thanks for the minocin suggestion. I'll talk to our doc about it. However, my change to doxy does not make me anxious to change the girls meds. I have been so tired and not feeling well again and this morning had a wicked round of diarrhea. I'm upping the probiotics way up and ate yogurt all day today. That helped. Doxy sure packs a punch. Continuing to assume this is a good thing and I'll keep it up to see how I do. Currently on 1/4 daily dose for another week. Oh yes, and for those who remember my paralyzed arm from last year, although it has full range of motion, it has continued to be a little weak. Since starting the doxy, it is much weaker than usual. I'm hoping this is a good sign too (I can hope anyway). Susan

Both my pandas girls have lyme and it's apparent now that they got it from me because I've found out that I have lyme and probably had it for years and years. I hope the Igenex testing helps to make it clear what you are dealing with. The lyme diagnosis really fit my dd9 so much more than pandas although pandas was certainly part of the puzzle. She has been hugely helped by her lyme treatment. dd8 continues to be a strange mixture of symptoms and we are working through them hoping to see a great improvement in her too. One step at a time and you will be OK. HUGS! Susan

That deserves some dancing smilies but I can't find any at work... Woo Hoo!

Right now she has a very itchy rash on her back. It spans her entire back but there are bands that don't have it so it makes me wonder if it's circular. It is fine and slightly raised. She's needed benadryl every 4 hours for the itch. I am assuming this is a herx but should I be doing anything else? Does she need to be seen by a doctor? Our regular doc won't have anything to say about it except wait it out. The doc treating her lyme right now is not an LLMD but he is knowledgable but also hard to get in touch with. I think I will need to transfer her care over to my LLMD for situations like this. Susan

I want to, and plan on, donating. My company has a matching gift program so I want to take advantage of that. But then I get to work and get busy and forget to find out what to do. I will make a point to do this this week or else just donate w/o. This forum has been instrumental in the diagnosis of my children and myself. Susan

I'm liking my new LLMD. She made some changes to my protocol which I like but I am nervous. Today I am stopping amoxcilin and starting doxycycline. I originally started with amox since I have a history of very bad nerve pain with doxy (probably a herx in retrospect). I am hoping I've killed enough lyme so that I can not herx too badly and of course we are working up slowly to the max dose. She also changed my zithromax dose to daily instead of m-w-f. I am looking forward to hopefully working on the next level of all this stuff but I am nervous for the change. As far as the children go, they can't take doxy can they? Is there another abx that kills the same stage besides amox that they can take if we need to switch things up for them? Susan

Oh no! HUGS! I don't have much experience so I am mostly offering support. My Dad was a carrier years ago. He kept giving it to my siblings at one point. He did get treated and suposedly all is OK now. However, my girls also seemed to get worse while visiting so I was wondering the same thing about it coming back. Hang in there. It's so much to handle all at once. Susan

Weird because just last weekend, dd8 had a patch like this on her back. It went away though after the weekend. But it was a circle about the size of a quarter and looked exactly like goose bumps. I don't know the answer but thought I'd chime in. Susan

How big is your yard? My parents put up deer fencing. Where they live, they install nice looking wooden fences around gardens and any place you don't want deer ( I was looking for a picture but can't find any, they are tall and very pretty). But there is also netting that is uses that can't be seen very well. I know there are lots of deer repellent products out there but I don't know if they work. Susan

I got dd9's igenex retest back today. She origninally had the most lyme symptoms out of the three in our family but her IgM and IgG were both IND result. After 2 months on treatment, her IgM came back positive (by igenex standards) IgM - 18 + 31** ++ 41** + 83-93** IND IgG 41** IND That's what we wanted, just to have more serological proof that we were on the right track. I should know by now, but what is the significance of the negative IgG? That means longer term antibiodies that have not shown up yet? I assume since she has had this since birth, that she is just not mounting good antibiodies? Susan

Thanks! Regarding bumpy...yes and no. She had a rough first month and then had a very nice evening out where her pain became much less and she got fairly sane. Now she has slow improvement and some episodes of herxing about a week after she takes her flagyl (once a month). That is usually the rough week for that month. I have been very pleased with her improvement. I don't think I could have asked for better with her (well I could have but you know... Susan

Although dd9 had a huge fit and OCD episode last night (triggered by breaking a toy of her sisters), I do have to happily report that she woke up this morning and told me that she does not have any fears anymore. She was filled with fears and most have subsided. I only see fear of ships and some bedtime fears still. However, she is sleeping in her own room and we are close to having a normal bedtime routine (falling asleep in her own room instead of on the couch). Her separation anxiety is basically gone. Her fears started when she was 3. She has been on lyme treatment for 3 months. Susan PS... looking forward to posting some good news like that about her sister. Fingers crossed.

Regarding the light sensitivity, my LLMD told me that is often on of the last ones to go so if that is the case with you, hang in there. I find myself covering my eyes when I talk to people at work. I hate those lights! This may not be too cool for a 16 yr old, who knows but you could also wear a hat that has a brim/visor. Susan

I left an email for our old LLMD today to see if she can still respond. Our new doc is not an LLMD but is taking over my girls case and consulting with our old LLMD. It's still a little strange and I'm not sure how it will all work out. I will also call our doc to see what he thinks. If it turns out we aren't getting what they need, I'll have them go to my new LLMD who I think will work out fine but is not in our town. We have not been tested for co-infections at this point but had low risk of them according to old LLMD although we were all on a bartonella watch. I have remembered that dd8 has had some rashes which she never has usually. That could be herxing couldn't it? She's had some molluscum on her arm that she just could not get rid of and I realized today that this area on her arm seems much better. Maybe it's somehow related. She's also been unusually angry and difficult. Anyway, thanks for your support and encouragement! Susan

dd8 has been on her lyme meds for 2 months. By this time I had seen some very nice improvement with dd9 and knew we were on the right path. Dispite dd8's positive lyme test, I am feeling worried and discouraged because she does not seem to have improved much and she doesn't seem to herx much. Some of her symptoms are very different than dd9 and I so it's harder for me to understand and interpret. Maybe she's herxing by being more angry and difficult? Maybe the meds aren't working. I don't know. She has seizures and an extra heartbeat. Small stature, slow growth, low muscle tone, tired, impulsive and other behavior issues, food ocd, sensory issues.... I am exhausted going to the chiro/neuro 3 times a week plus all the home exercises we are suposed to do plus school homework and everything else. I feel like her treatment is wearing me down and going against my treatment. Sigh... Susan

Oh wow! I've ready about the MBP and it's incredible. I can't believe that happened to you! What do the SS guys say about it? I hope it does not come to anything. Susan

I even got this type of response when I went to see an integrative doctor recently. I thought for sure she would be supportive but she slapped the CDC/infections disease stuff on me right away. If you get a good feeling from her, maybe you could just tell her you are being treated for lyme but otherwise, if she does not need to know for medication cross reaction reasons, maybe feel her out some more. I have to tell my primary doc the next time I see him I think and I am not looking forward to that. I'm putting off seeing him as long as I can. Susan

I don't have any info but wanted to ask why you are changing over? I'm just curious since I assume this is someting we will do at some point but I don't know how to figure out when. Susan

It's a lymph, it's a cyst, it's a lymph, it's a cyst.... LOL! I am so sorry, but you gave me a chuckle this morning because this sounds so much like me! I hope you see your LLMD and find out what it is. Sounds to me like it could be a herx. How are you this morning? I have had some werid things happen to me. The other day my jaw locked up and I could not close my mouth all the way. It was either lyme or my allergy shot. It was scary but luckily went away. Susan

My daughters have pandas. They also have confirmed lyme. Our lyme treatment is all mixed up in our pandas treatment and it does get very confusing. Sometimes I don't know what is pandas or what is lyme. I often feel unwelcome and alienated on the pandas forum now. I resisted posting this as I don't like to get involved in the drama either but I wanted to give my point of view. I'll stay on the lyme board now I guess until it becomes clear that the lyme is gone and see if we will still be dealing with pandas. It makes me so sad. I spent so much time and learning here with everyone. Susan

I have UHC and they paid 80% for us. Good luck!