mama2alex

Yes, I plan to go if at all possible. But for me its about a 20 minute drive.

For those in California, I just found out about a presentation by two prominent LLMDs (one from east coast, one from CA) coming up in January in Milbrae (just south of San Francisco). Here's the link: http://events.r20.constantcontact.com/register/event?oeidk=a07e5fj5rvu98324bb1&llr=xsuluhcab

I'm really sorry you're going through this. I have an ERMI kit sitting on the table staring at me, and I'm afraid to find out! But of course we'll do it and I may be posting similar things soon. Anyway, I had a thought. Maybe you could call the original company that did your mold inspection and tell them about the ERMI results, and say "You guys missed something. Can you come back out and look again?" Just a thought. Good luck!

Age of Autism ran this piece this morning and its great they are connecting autism and PANDAS. However, not one word about the Lyme connection (and I admit I skimmed some of it, as I'm in a rush, so there's a possibility I missed it). If you have the time and desire, please comment so that people with an interest know how many of these kids also have Lyme. Its something I never see mentioned on Age of Autism, and I'm not sure why. http://www.ageofautism.com/2011/11/autism-and-pandas-.html#more

Hi Lyme Mom! Looking forward to reading your update. I'm sorry your relatives are dealing with this - its so hard. Our ds had difficulty coping with anger/frustration/transitions his entire life, then it escalated to more intense meltdowns and rages once PANDAS hit. He never had telltale pains of Lyme, but he occasionally complained of mild "growing pains." He also had stomach aches that became more frequent with PANDAS and headaches after start of PANDAS. After we started Lyme treatment, he had joint pains briefly with addition of Cipro about 6 months in. All of these symptoms have faded (no more rages, copes better with anger/frustration; no more headaches or stomach aches) with treatment for Lyme/Bartonella. Things got worse, then better for a couple of months, then worse again after first IVIG, but only Lyme/Bartonella treatment has given us sustained and continuing improvement.

Hi Wilma, Hang in there! If the current treatment isn't working, or is causing behavior that isn't tolerable, you need to discuss with your doctors and have them try something else. I would also ask about detox if they haven't given you a protocol. If they don't provide this, you can go to a DAN doctor or naturopath for this. You still have lots of options and I strongly believe you will get there! My son didn't recognize my husband and me at certain times. He believed a robber was in our house 24 hours a day. He thought there were bombs strapped to his body or hidden in his dresser drawer. He hit me. He came after me with a fireplace tool. He got out knives and threatened to kill himself. He ran into the street. He dropped out of AYSO soccer and other sports due to anxiety. Normally a very social kid, he was losing friends, becoming a loner. NOW, after 14 months of Lyme/Bartonella treatment, he is happy, social, back in sports and trying out for club soccer (more difficult level). He is not 100% well, no, but vast improvement shouldn't be minimized. He is a different kid, and we are a different family, than 14 months ago. There were times when I worried he had brain damage, that he would never get better. But that wasn't the case and I think it hasn't been the case for most, if not all, of these kids with PANDAS/Lyme. Try not to think about that - just stay positive. Give it a few more months, and if your LLMD's aren't getting her well, find one who can.

Thanks for posting this! This describes my ds to a tee (except the hypotonia was mild and he breastfed well): "If lyme is transmitted, you will see severe hypotonia (floppy baby), child will be irritable, tire easily, sensitive to light, noise, skin. The hypotonia will cause trouble sucking due to the lips being floppy. This can improve as time goes on." Dr. J is amazing.

Our ds had health and mood issues from the very beginning. Cried every day for the first 5 years of his life. A fair number of colds/infections early on, but not over the top. First pneumonia at age 3 1/2 - six pneumonias by age 9. Asthma with viral illnesses starting at age 6 - one month after DTaP shot. Severe cat allergy identified at age 7 1/2 (probably developing from birth as we owned a cat when he was born). He is tall for his age though.

For anyone who thinks their child was vaccine injured or vaccines contributed to health problems, and has wanted to share that belief with friends, but didn't know how to broach the subject... This documentary is free online just for this week. It is not an anti-vaccine rant, so I felt comfortable sharing it on Facebook as "food for thought." The media has been so biased the last few years, I think many people who haven't been affected think the controversy has been laid to rest.

For anyone who thinks their child was vaccine injured or vaccines contributed to health problems, and has wanted to share that belief with friends, but didn't know how to broach the subject... This documentary is free online just for this week. It is not an anti-vaccine rant, so I felt comfortable sharing it on Facebook as "food for thought." The media has been so biased the last few years, I think many people who haven't been affected think the controversy has been laid to rest.

For anyone who thinks their child was vaccine injured or vaccines contributed to health problems, and has wanted to share that belief with friends, but didn't know how to broach the subject... This documentary is free online just for this week. It is not an anti-vaccine rant, so I felt comfortable sharing it on Facebook as "food for thought." The media has been so biased the last few years, I think many people who haven't been affected think the controversy has been laid to rest.

Since he tested positive for Lyme, you might want to check out the Lyme and Related Diseases Forum on here. Other "pieces of the puzzle" often discussed over there include KPU, mold, viruses, vitamin D, EMFs, biofilms, Babesia, Bartonella, mycoplasma and probably other things I'm forgeting. Most of our kids also have PANDAS, or were originally diagnosed with it, so you will find relevant info there.

Hi, I'm so sorry you are going through this! I just have a minute, so wanted to share this from the website of the International Lyme and Associated Diseases Society (ILADS): "It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy." I'd recommend looking at their web site to learn more - www.ilads.org.

Wilma, It may not be that she's on the wrong antibiotics, but rather that they are the right ones and her symptoms are from the bugs dying off. What are you doing for detox? I would work on that aspect and see if detoxing her helps the symptoms before changing the antibiotics.

My son complained of the burning and it became an epic battle to get this up his nose. We stopped for a time, but later he tested positive and we had to restart. When I ordered a new bottle, it came with ice packs, so I refrigerated it (thinking I should have done this with the first bottle). Interestingly, my son didn't complain nearly as much about the refrigerated spray, so maybe this made a difference. I talked to the Hopkinton pharmacist today, and he said BEG doesn't need to be refrigerated, but it doesn't hurt it either. So that's something you might try.

Yes, my son has staph in his nasal passages. Our Lyme doctor figured it out last spring and treated it with BEG nasal spray. We saw significant improvement in "bipolar-like" symptoms. Then we stopped treating for a while and cultured him after a couple of months off the medications. He was positive! We went back on the BEG and added Rifampin as well, but my son had such a severe uptick in anxiety and moodiness (doctor feels it was die-off), we stopped both medications and he was back to baseline within a few days. He's back on the Rifampin now and we'll add the BEG spray back in after two weeks. We've also increased detox support. What a battle. I'm curious, how is your doctor treating the staph? I'd recommend retesting after treatment, because in our experience, it is not easy to get rid of.

Hope everyone is planning to respond! I am about to fill out the survey and noticed an update on the LymeDisease.org web site: http://www.lymedisease.org/news/lymepolicywonk/835.html They've had over 2,000 responses so far! Let's keep it going. I plan to post this at our doctors' offices.

8 years ago I was diagnosed with mercury poisoning - it was off the charts on testing. I had severe insomnia, chronic fatigue, short term memory loss, pain in my hands and feet, and mood issues. My doc didn't yet know about Lyme, so I wasn't tested at the time, and he treated with chelation. The fatigue, moods and insomnia completely resolved. Pain and memory were much better but not resolved. Over the years some symptoms have crept back, and some new ones have cropped up, but the insomnia never returned. I have no idea if this has any relevance to your situation, but it makes me wonder if the metals could be what causes the sleep problems. I've heard that its common for people with Lyme to have high levels of mercury/heavy metals. Maybe because Lyme inhibits detox? Not sure. Anyway, I thought I'd mention it. Hope you find relief soon!

Hi Eljomom, Regarding the above, I just wanted to clarify that a good LLMD will do a lot more than Igenex testing and antibiotics. They will also test for chronic viruses, mycoplasma, staph, strep, and other infections depending on the symptoms your child presents with. They will look at vitamin and mineral status. They will focus on healing the gut, if needed. They will look for allergies, immune deficiency, heavy metal toxicity, KPU, mold exposure, biofilms and other issues that are commonly involved when a child has neuropsychiatric issues. Again, all testing based on symptoms and what the clinical picture and history show. We have two LLMDs (one for me, one for my son), and they will look at all those things and more. My son's only treats Lyme patients, but mine will treat a patient for whatever is affecting their health, not just Lyme. He uses abx, herbals, vitamins, detox, homeopathic remedies, and more. If you do go the route of an LLMD, I think that’s the type you should look for – someone very experienced with a large “toolbox.” I do understand that your situation is a little different than many here, in that you had no “sudden onset” and your daughter is happy much of the time. This does affect decision making. It doesn’t mean she’s well, or that it’s not infection-triggered. It just makes you a little more afraid of rocking the boat. We were able to make some pretty drastic medical decisions because my son was terrified there was a robber in the house 24 hours a day (and yes, we tried some things that didn’t work, but they helped lead us to the things that did). He missed about half of 3rd grade. He was terrified, miserable, his personality changed, and he was talking about wanting to die. It does give you the motivation and license to move more quickly, spend more money, and take greater risks. But I don’t see you “not doing anything.” You are just moving more slowly, and not jumping into any of the more drastic options (such as steroids or removing tonsils). That’s ok. You will get there. I think everyone has jumped in on this discussion because we all become extremely alarmed and upset when someone talks about “giving up.” IMHO, that’s the only way to fail to get your child better. When I read your post, I didn’t believe for a second that you would give up. I just thought you were feeling frightened, paralyzed and desperate, as we all have at one time or another. You will find your way. You will find the right doctor. You will find the courage to try something else for your daughter. You will find the voice to convince your husband. You might make mistakes along the way – we all have – but you will realize it, try something else, and eventually get her well. Hang in there!

Hi Eljomom, There seems to be a very good list of diagnostic tests going under tpotter's recent post "What Diagnostic Tests?" over on the Lyme forum. It looks pretty comprehensive - not just for Lyme Disease.

LLM mentioned this on another thread and I was curious, so I looked it up. I thought I'd post it for others to see as well. http://www.foxnews.com/health/2011/09/27/doctors-find-link-between-lyme-disease-autism/ I've seen autistic kids in our LLMD's office and I've heard that he's found Lyme in some, but not all, of the autistic kids he's seen.

Thanks for the replies. No, I don't think its serious either, but its obviously a nerve issue, which makes me take the whole thing a lot more seriously than being tired or having a headache. S&S - You're not being nosy! I've had some negative reactions to various antibiotics, including nausea, vomiting, and severe itching. On my 3 week Doxy challenge, I felt awful to the point of barely getting through the day, but I think this was just a herx. The doctor felt that we should go with herbals in the beginning while we work on my gut, etc. I believe he's planning to pull out the abx later. Currently I'm on A-Bart and A-L Complex (for Lyme), plus digestive enzymes, vitamins/minerals, detox stuff and probiotics. Alex is actually going to do an A-Bab challenge for Babesia soon. We are sorting out some stomach issues and a few behavioral problems at school before I put more stress on his system.

I'm also being treated for Lyme/Bartonella, but just with herbals/supplements so far. This morning when I woke up my hand was partially numb. Its mostly the skin on the back of my thumb and part of the back of my hand. I can feel it when I touch it, but the feeling is greatly reduced from normal. Has anyone else experienced this? Did it last long or go away quickly? I have to admit, this makes me a little nervous. I have an appointment with my Lyme doc tomorrow, just by chance, but he's not in the office today, so I thought I'd put it out to all of you. Any personal experiences and/or thoughts would be greatly appreciated!

Carditis can be caused by Lyme (Borrelia), so they should test her for that too. I think it occurs in something like 10% of those with Lyme Disease, although I've seen different numbers in different articles.

It sounds like you found an answer, but I just wanted to repost this link for everyone: http://www.enzymestuff.com/dietsmeds.htm It has a LOT of information on enzymes. In case you want to try out different brands, Karen DeFelice mentions a couple of specific products: "Last spring someone called saying her son was on time-release seizure meds and what type of broad-spectrum enzyme could she use. After looking around, I suggested Lypo from Enzymedica. Although intended as a product for higher fat diets, it just happens to have a blend of amylases, a blend of protease, a blend of lipases, and lactase...and no cellulase! This pretty much covers the main food groups. Add in Purify, Peptizyde or other strong protease with it for extra proteases (or in the case of Peptizyde, for any casein/gluten issue). It worked out quite well. Her son was 19 years old and showed good improvement. So that combination is a good workaround for someone where cellulase may be a problem."