Suzan

My multivitamin has 100 mg of GSE in it. I wonder if that is enough to do anything....? susan

My dd8 has food related OCD and it relates to drinks like this too. She will rarely drink the entire drink and often have several cups around with liquid. Even if she finishes, she wants to "save the cup for later" but won't use it again. She will save bottles of juice or soda for later and never go back to them but doesn't want me to throw them away. Luckily if I don't ask her about it but just throw away or put in the refridge and give it to her later, she does not complain. But if I ask, then it becomes a problem. Susan

Great news! I hope you handle all the meds and any herxing well. It will be good to hear your progress. I Herxes a lot on cats claw. So much so that I decided to wait until I was more stable from the other things I was taking before trying again. It's powerful stuff! Susan

My dd9 took valtrex too for the HHV6 to see if it would help resolve some of her neurological symptoms. I think it did help her canker sores. dd8 never took valtrex but her canker sores are better now too. Maybe since dd9 does not get them as often they aren't passed around. We always had an increase in symptoms whenever the sores showed up. Susan

My girls get canker sores every time they are sick. They used to get them all the time but not as much now. They have been diagnosed with PANDAS but also are now being treated for Lyme. My dd9 also had positive HHV6 titers. I think there is a connection with the canker sores to what is going on with the kids. I assume lyme is our overall underlying issue, but we won't know until after treatment if the pandas is still around. Susan

Regarding liquid bentonite clay, this is what we are trying now. I pictured the clay to be gray or dark like clay from the ground but it's white. My dd8 calls it "the stuff that doesn't taste bad" and will take it mixed with a little juice. I'm very happy with it! Susan

All of our IVIG's were pre-lyme diagnosis/treatment but our llmd suggested another later on, maybe next year if we need it. We never used steriods with our IVIG's either. GOOD LUCK!

My girls are now 8 and 9 but it is believed they have had lyme since birth. We have experienced many symmptoms since toddlerhood and before. Susan

Well that is interesting because I used to get this all the time! It felt like a knife was going through my head, often at my eye. Very intense and very quick. We are under observation for bartonella. For my dd9 though, it is more burning, like it's on fire and lasts much longer (10-20 min). Interesting though that you talk about hormone related. She is starting puberty

DD9 has been on her lyme treatment since the end of December. LLMD wanted us to retest Igenex to try to envoke a positive test (first test was IND on lyme specific bands). So we stopped her antibiotics 8 days ago. I put her back on last night. She's not well today, emotional and pain so I figure she's herxing. We now have our pedi neurologist managing our lyme care. He is working with our old LLMD but he's still new.... So, starting on Monday (before adding the abx back in) she starts with these burning headaches in her temples that hurt so bad she calls them a 10 on the pain scale. They last about 10 - 20 minutes. It's happened every day this week (so three times but also a couple of little mini ones). The neurologist says if they keep happening, he wants to give her an EEG or something else (?) to check to be sure there is no seizure activity or other neurological thing going on. My reaction would be to say it's a herx or lyme symptom. I don't want to lump everything into this category if there could be other things going on but since he's a neurologist, he'll be looking for these things and maybe we'll end up spending a lot of money where we don't need to. This is a long way of asking if anyone has heard of this as a herx? Burning pain in the temple that's really, really bad. After the first one, she said she could not think well after (that's what concerned the neurologist too). susan

My girls both got rashes like you describe with amoxicillin and anything made with it. Our docs stopped giving it to them, which was fine because it didn't work well for their sinus infections, etc. anyway. Now I think it was a herx. They are taking amoxicillin now with no trouble. But I don't know how you can tell the difference. Susan

The LLMD's usually do a three stage approach treating the lyme in it's three stages of life. This is done by three different antibiotics that each target one of the stages (we take zithromax, amoxicillin and flagyl). Then, probiotics and antifungals to combat the yeast overgrowth caused by the antiboitics (we take nystatin and diflucan). Then detox is important to remove the toxins from the dieoff of the lyme and candida so you can take different detox products. My LLMD prescribed something for me (clostrid I think) and my girls take bentonite clay and/or activated charcoal. There are other protocols but this seems typical, just substitute different meds since there are more than one type that basically does the same thing. Susan

Since I've recently learned about diatomaceous earth, I think it's a great product to have regarding tick and flea prevention. I have not figured out how I'm going to use it externally but there are a lot of suggestions and aside from not breathing it into your lungs or getting it in your eyes, it's safe and it is non-toxic. Susan

We started with just the lyme testing. That's what the LLMD who we were going to see required before we got there. But with your child's history, even with a negative lyme test, I would recommend taking a trip to see a good LLMD. The tests are not always reliable and LLMD would be able to do a clinical evaluation or direct you to specific testing that might not be the whole thing. I resisted getting the Igenex test for a long time but I'm so glad I did. I'm glad to hear Dr. B is suggesting lyme testing! GOOD LUCK! Susan

I have the vibration thing.... It started maybe last year on my scalp. It's always in the same place. I didn't know anything about lyme at the time and I had no idea what it was. I thought maybe I had some scalp problem and started using dandruf shampoo. It would come and go but at the time, I never would have described it as a vibration. Fast forward to my lyme diagnosis and about 1 month after being on meds, my shoulder blade started vibrating. It felt exactly like a cell phone vibrating under my skin. I realized it was the same feeling in my head but since there was no fat there, it felt different. When I told my LLMD about my shoulder, she said the same thing happened to her. I've felt it on both sides of my scalp and shoulders but it's mostly on the left side and always in the same spot. I've posted this question about the vibrating on another lyme board and there were several people there who all had it and all described it like a cell phone vibrating under the skin. My LLMD said it took about a year on lyme meds for hers to completely go away. Susan

Well I thought I would chime in to say dd9 gets this too. I never thought of it as a rash before. She gets it on her arms and legs mostly. I have never seen it come or go as quickly as you describe but I've seen it and wondered what it is. It's not there all the time. I'll pay more attention now. Susan

I am sure my girls got lyme from me at birth but there's no way to prove it I guess. But we are assuming I have had lyme since I was a child. I don't think I will have much help for your stepmom's friend though since we have not dealt with issues that she is dealing with. Except to read the info from Dr. Ann Corson's talks on pediatric lyme and have her child tested for lyme and/or seen my a LLMD for an evaulation. WIth lyme treatment, maybe her child can improve if he/she has lyme. Susan

Oh I forgot to mention, I take cholestyramine in the powder form and my dd9 takes it in a pill form. I give it to her as soon as she gets home from school and then no other pills until 6:30 (usually 2 hours in between). I take mine in the morning 1 hour before other pills and food. I guess it's working...??? Susan

I'm so sorry this happened! My dd was recently exposed to something and caught a virus. She really did back slide for a few weeks but she did get back to her new normal. Right now, I'm taking her off her abx for her retest next week, and she is backsliding now to. But I know she will bounce back since she's finally on the right medications. I hope you all get better soon and find things evening out quickly. Susan

I don't think I know but I wanted to comment that the quarter sized rash that you see in the shower sounds exactly what dd8 has. Her's expanded to the size of a softball circle. It was on her torso near her armpit. I never found out if it was related to the antibiotics, lyme or candida. I figured it had to do with one or the other. It is much less apparent now and seems to be on the way out. It appeard before she started lyme treatment but she was on daily zithromax for PANDAS. After a month on lyme treatment, it seems to be going away but this includes more abx and also candida meds. I am wondering if the antibiotics could be causing herxing and the break is allowing it to cycle through? I don't know, hopefully someone else will have a better idea or explanation. We now give our abx every day (amoxicillin) or M-W-F (zithromax) or Monthly (Flagyl). Susan

Good luck! It will be long and tiring but it will be good!!

I have two children, I have morphed them together below except where I noted things specific about them. Hopefully I have made sense.... My child has: Lyme - positive Igenex Testing and mother (me) positive for lyme Chronic infection Chronic Strep - History of chronic strep I don't believe they have strep anymore Significant Immune Deficiency No known current infections What group is you child in? Group 1 - my child dd8 only reacts to strep. other illnesses do not cause exacerbation HOWEVER, she also falls into group 4 because she would have other unknown triggers and patterns Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy) Group 3 - my child dd9 reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline Group 4 - my child dd8 exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation. Group 5 - other presentation (describe) If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated? dd8 - 118% (taking high doses of taurine which I think skewed the results) dd9 - 143% Both girls were elevated in all anti-neuronals What symptom group would you put your child in: tics only ocd only tics first, and ocd came later ocd first, tics came later completely balanced How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below) N/A - they don't exacerbate - its always pretty bad one 2-5 obsessions, separation anxiety, phobias, urinary urgency (dd8 has seizures, extra heartbeat and born with hemangioma birthmark 6-10 10+ How many symptoms does your child have in exacerbation? (list them next to the group below) one 2-5 6-10 10+ obsessions, add/adhd, dialated pupils, urinary frequency, phobias, anorexia (dd8 only), reassurance questions, regressive behavior, rages/tantrums, nightmares, hallucinations, bedwetting, urinary urgency, separation anxiety, extreme irritability, emotional liability - dd9 - PAIN, episodes where she could not walk, nightly roving joint pain, muscle twitches (not tics) What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were. 3 "low" dose IVIG's for dd9prior to current treatment. Increased pain and inability to walk after IVIG's. Improved mood for 3 weeks and then it would wear off. Current meds for Lyme using the 3 stage approach: 500 mg zithromax M-W-F 1500 mg Amoxicillin daily 500 mg Flagyl 2 days each month Nystatin, Diflucan, probiotics, multivitamin, caprylic acid, melatonin, benadryl, zyrtec, ibuprofen Protocol is working great for dd9. After 3 months on lyme treatment, most of her symptoms are gone and/or at least 70% better. Hardly any pain and usually sane. She still is triggered by illness and allergies dd8 has been on treatment for 1 month and is not showing improvement yet

For us it was the three stage antibiotic approach to treating lyme. Zithromax only at a high enough dose helped too but not enough. In addition to the melatonin, we also use 5-htp and benadryl to calm in the evenings. Susan

Wilma, was that on blood work that was done that was not the Igenex test? Do you think you also got the Western Blot done through the regular lab? What else does it say? Susan

Hi there! dd9 had worsening pain (leg, feet, hands, back) after her IVIG's that I now believe was herxing. Her IVIG's would help her behavior for about 3 weeks and then it would return. It never helped her pain, only made it worse for a while. Susna