Suzan

Oh, I think I misrepresented myself regarding my improvement. After 5 months, I am a lot better. I just did most of my improvement in the first 2 (maybe 3 months). Before this, I was so tired, I could hardly drag myself around. My brain fog was so bad that I was afraid I would lose my job. I had forgotten that also improved GREATLY in the first couple of weeks. I can function now where before I could barely function. I'm starting a weight loss program that I did not have the energy to do even two weeks ago. Slowly things are getting better. It's just the rapid improvement and drastic improvement seems to be gone so I don't notice as quickly. My feet might start to hurt and then I say "wow, they have not hurt in weeks!" (where the used to hurt every day). I do expect to be on treatment for anonother 6 months probably, and maintenance after. I've had this my whole life so I expected that it would take a long time to get rid of. My LLMD also says that some symptoms are slower to resolve (like sensitivity to light, noise and ringing in ears are examples she used of my symptoms). As far as standard protocol, I'm thinking of the three stage approach. This is antibiotic treatment that attacks the lyme in it's three stages of which I can only remember cyst right now. But there are 3 stages that all are attacked by a different abx which is why you hear some people on three types (I started with zithromax, amoxicilin and flagyl and I am also on plaquinil that busts cysts too). I know not all LLMD's do this just the same so I guess it depends on your case and doctor. If you have co-infections it may start our differently. I hope you don't stop treatment for yourself but talk to your LLMD about your feelings and see what his/her expectations are for you and your symptoms. Susan

dd8 - I didn't notice any changes in her except increased rashes for a month. Now she's falling apart (bossy, impatient, impulsive, irritated, etc.). She's been on her treatment for maybe 1 1/2 months. She does not seem to be any better at this point. dd9 - I noticed an improvement in her behavior after about a week I think. I also noticed increased and changing pain and herxing for a month. She only complains of pain now once a week maybe(huge change from nightly suffering). She's been on her treatment for 3 months. me - After a month, I noticed that I improved a lot. Much less twitching especially. But I was still very tired and got the buzzing in my back. I've been on treatment for 5 months. I still have a long way to go. I had the initial improvement after 2 months and then not much improvement since. But I have also been changing my protocol which has been stirring things up. I started very slow, so I don't think I noticed anything after a week. What protocol are you on? Are you up to full dose yet? Susan

Oh, I also wanted to say, my dd9, her results were negative for both tests. I can't remember now the exact results between IgG and IgM but she had positive band 41 and IND 31 and 34. Our LLMD, based on the fact that dd8 and I both had positive test, and dd9's overwhelming clinical symptoms, had no trouble treating her. She has shown more improvement in 3 months of lyme treatment than all of her pandas treatment combined. Susan

I would start with just the 188 and 189 and go from there instead off all at once. Also, have you seen an LLMD with these results? I know there is a way to try to draw out a positive result, it usually means going on lyme treatment for a while. With the antibiotics she's been on, maybe it would be enough. I don't know too much about that. I really believe you should go with your gut. Those parenting instincts can't be denied!

My 8 yr old is much worse when I give her fish oils. Have you noticed the change since you added the oil? Or were you already giving that when you started tapering? If the lyme treatment has been for 2.5 months, that seems early to go off the meds, unless you are wanting to treat it with naturals... Susan

During one of my dd's birthmark surgeries, they discovered a premature ventricular contraction. That was when she was about 4 years old I think. She was monitored for a few years but they said she was fine. Now that she's on her lyme medication, she seems to notice the flutter more now and it really bothers her. I am hoping her heart beat corrects itself with more treatment but I don't know. susan

That is great news, I'm so happy to see your update! Susan

My girls have congenital lyme. I never felt great while pregnant. I struggled with edema and high blood pressure and premature births. Both pregnancies were c-section. dd9 - twin pregnancy, premature labor at 27 weeks, babies born at 33 weeks, jaunice, feeding tube. dd was very healthy though until the ear, sinus, strep and chest infections started around 1 year old, intolerance to dairy and wheat. Separation anxiety and other odd/crazy behavior from age 2 on. Sensory processing disorder at age 5 and PANDAS at age 7. dd8 - born 4 weeks early, jaundice, hemangioma birthmark on forehead and back. Lots of ear, sinus and strep infections, intolerance to dairy and wheat. (she had a large head too, didn't know it could be lyme related). Started growing breast tissue at 2 years old. Watched for more signs of puberty but none developed. Food hoarding and food issues since the start of solid foods around 5 months old. Deveoped PVC (extra heartbeat) seizures and sensory processing disorder all around age 3 and 4. Then PANDAS at age 6 After age 3, I started always searching for what was wrong. I guess when they started talking and interacting more, it became more obvious that it was not age related. Susan

Interesting! I have noticed my dd8 does not respond well to omega 3's. She gets much worse on them regarding her behavior. She is also not sensitive to light or sound. She does not express herself well so I don't have much insight into what is going on inside her. Susan

My dd8 right now is demanding, bossy, annoyed, self centered, complaining, and not cooperative. She can't control her responses, can't do her homework, won't let go of an idea... It's so awful because she was doing so well. It's got to be herxing and stirring everything up from starting the lyme meds a month ago. We just have to keep plugging through and hope it gets better. Maybe the neuro/chiropractor stirred things up too. And we are on vacation and having very busy days. I feel bad for dd9 who is ready to really have a nice vacation and it's like we are trapped by this negative, controlling, unhappy person. Anyway, I didn't mean to get into all that but I can understand what you are going through. Susan

I used to stay away from probiotics with S. THermopolis in it due to pandas but since the lyme treatment, we have been using VSL#3 pills. I assume it has the same stuff in it as the powder but I actually don't know. It has worked very well for us with no issues. Susan

It's amazing to me how many of the parents are coming back with lyme and that so many of us would never be diagnosed if it were not for the search for answers for our children. I hope you have great success with your own treatment! Susan

I was so hoping to find out it could be a herx because I have one that just appeared on my hand. My dd's have both had molluscum contagium although it's been a strange road for us regarding these bumps. dd8 has had some on her arms that just won't go away. I thought I was doing well no getting them after 2 years but maybe I finally have them now too, I don't know. I've always thought the bumps were related to their pandas/lyme somehow but I don't know how. Susan

Update on our appt today for those who are interested in this.... It was so fascinating watching the rest of the testing today. The doc says that dd8 has a right brain function deficiency which makes the left side of her body weak and uncoordinated. She has a very poor sense of smell which he says is probably the biggest contributor to her picky eating because she can't smell it well so she bases what she eats off of texture rather than the smell triggering her desire to eat. This could be what triggers her food OCD and food restriction when she is sick. He said the right side controls our sense of smell. She holds her head tilted to the right and holds her shoulders uneven, he says this is common too. Said her impulsive, feet in your face type behavior can be attributed to this as well. It was amazing watching him test her and to see the left side over and over not be able to do what the right side can do. He said if your brain is in balance, it will have a dominate side for writing, kicking and catching but she switches it all around and leans toward the left side even though she's right handed. He's going to do adjustments on only one side of her body and then we have exercises and things to do from home to strengthen her left side (like lifting leg and arm for 10 seconds working our way up to 30 seconds, catching or kicking a ball, smelling essential oils). He has some music that he wants her to listen to only from her left ear. He said this will slowly retrain her brain to react as it should. During the adjustment, he was able to crack her back and a few other places and she just melted in happiness and her back didn't bother her tonight. I still don't know how all this fits with the lyme diagnosis but I'm thinking no matter what, getting her brain in balance will help all around. He wants to see her 12 times to start and I think this means going a couple of times a week. It's going to be a huge pain and burden on our schedules. But after that, we can go back to our local chiropractor and he can take over once the specific neurological adjustments are completed often enough. Susan

Hey Ailidh, Happy Birthday! Last time I remember, you were 15

You have the right attitude to get through it. It will get better. When I feel down now, I have to remind myself of how far I've come and how bad it was just a few months ago. I am sorry it's so hard right now though. Susan

We have a mini trampoline which is not as fun as a trampoline but my kids love to jump on it. I was also thinking a jumprope. You could count to see how high he could go and would give him something to try to beat each time. We also have a treadmill and we taught our dog to walk on it. The kids like to get on it with the dog and walk. Without the dog, they would never step on it! Susan

I don't know how high you can go but our doc's all say I can go up to 5 mg for my kids (they are 8 yrs/51 lbs and 9 yrs/85 lbs). I usually give them 2.5 mgs and that does the trick for us. We love 5-htp and l-theanine here too. 5-htp really works great for calming anxiety. Susan

I don't check in as often because we are thick into lyme treatment and hanging out on the lyme board. I hope to find that I can post our success sometime next year for my two girls and myself. We have seen great improvement with our treatment and I hope that the pandas does not rear it's head once the lyme is taken care of. After more than a year of thinking everything looks like pandas, now everything looks like lyme (and that was all after everything looks like celiac, etc..., LOL). My dd9 was not getting better with her IVIG's and antiboitics and then we learned about the lyme. She has improved a lot within 3 months. Time will tell how far we will go to healing. Susan

Hi, actually, I take this powder and I like it. dd9 can't tolorate the taste. I have a pill form of it but I think I don't give her enough (she can take 2-4 pills a day and I only do 2). I can increase or decrease at will so maybe I'll try to increase and see how she does. Thanks for the reminder!

Your mail box is full. The GA information I have is not very lengthy but all together it's a lot. If you PM me your email, I can email it to you too. There are some sites that may help her in her search. Susan

I have a list from NC, TN, SC and GA I can send you... will try to PM you now. Susan

I thought I would post an update here, I started dd9 on bentonite clay and increased her probiotics and continued on her lyme treatment. After 2 more days, the headaches have stopped and, knock-on-wood, have not returned. Susan

http://www.ehow.com/about_4568460_chiropractic-neurologists.html Our neurologist, who is also taking over our lyme treatment for the girls, referred dd8 to a chiropractic neurologist. We went today and it was very interesting. He had her do various things to test the strength and reactions on both sides of her body. It was obvious that her left side was weaker and less coordinated. I have to complete a long survey about what I have observed and then he will come up with what he thinks and suggests. I don't quite know how it fits into lyme and pandas but I go back in 2 days to see what he has to say about her testing and my survey. The survey includes questions we are familiar with regarding behavior, sensory issues, ocd, etc. If her symtoms are being caused by lyme, then not sure how chiropractic would help (I mean it can't sure lyme) but maybe it would support her system so she can heal faster and maybe correct some of the damage caused so far. Anyone else heard of this or seen one before? Susan

I am currently waiting for the Igenex results for dd9 to come back. We a expecting to see her bands 31 and 34 chnage from IND to positive. I will post the results when I get them. I still don't quite understand how her test can become positive when she's doing so much better after 3 months on treatment. So glad you had a good appt and are seeing great results. Susan