momcap

Were you able to get prices? I checked the site, but no matter what I picked it says "not available in your area". I'm thinking they can only ship outside of Canada. ???

DS7 had TSH climbing and climbing during his lyme treatment. We saw it peak at almost 7. Just as we were booking an appt with an endocrinologist it finally fell back to normal and has stayed normal for months now. Our LLMD told me that she often sees "blips" in TSH levels while treating for lyme. She said they usually return to normal on their own, but not always.

DS8 (lyme, bart, PANDAS) - ASO baseline of 27 from a pre-PANDAS blood draw years ago (so much for the "some kids just have high ASOs" line). During PANDAS, ASO is stuck in 500s for 2.5 years despite treatment with single abx including amoxicillin, azithromycin, augmentin, biaxin, etc. Throat cultures are negative. Removed tonsils, ASO still in 500s! After treating lyme/bart very aggressively for 12 months his ASO is now in the 300s. DS7 (lyme, bart, strep carrier) - ASO in 200s. After 12 months of lyme/bart treatment ASO is 80 (the upper limit of normal for our lab). Stopped abx 2 months ago and last week he had the "streppy breath" back again. Ugh. Haven't re-tested yet. DS5 (lyme, bart, some PANDAS symptoms, but not diagnosed) - ASO in the 700s. After 12 months of lyme/bart treatment it's in the 400s. Our LLMD says high ASO is very common in lyme patients. Some of her patients recover fully while still having high ASOs. She doesn't know what to make of it. Neither do I.

DSs 8&5 both take nystatin and s. boulardi daily. I separate them as far apart as possible. They also take diflucan occassionally. I look at it like taking probiotics while you're on antibiotics. Taking beneficial yeast is really important when you're on yeast meds (IMO).

For sure. I don't know how hormones play into it, but I've often thought they must be a factor. With the pregnancy I felt better literally right away after DS8 was born. The next day I woke up with a clear head. So weird. My subsequent 2 pregnancies were normal, so that throws my hormone-involvement-theory for a loop. More questions than answers, that's for sure!

This actually happened to me. I was VERY sick as a teenager - elevated markers for JRA, constant debilitating pain, severe depression, anxiety, chronic cough, visual disturbances, raynaud's, horrible brain fog - felt like I was a zombie. My parents took me to many doctors and found nothing conclusive. After a few years the worst symptoms simply resolved. I don't know why. Then in university I got really sick and felt just like this again, but with additional symptoms like bleeding gums and very swollen glands. I was diagnosed with mono. I got 10 days of amoxicillin and after many months I recovered. Then, when I was pregnant with my first child (PANDAS DS) I got sick again. I felt the same as the previous two times, but this time I had the WORST brain fog, to the point that I couldn't drive, use a bank machine, or basically function at all outside of my home. Very scary. I didn't know ANYTHING about lyme. I chalked it all up to pregnancy, and was not treated for anything. I got (re-?)infected in August 2010. It felt exactly like "mono" yet again, but I had a bite with a red circular rash and classic symptoms of acute lyme (high fever, BRUTAL headache, swollen knee, etc). I made 3 trips to the E.R., thought I was dying. Nobody knew about lyme, and I was told all 3 times it was viral. After 6 months I recovered. I have no lyme symptoms right now. But a main stream I.D. doc told me that I certainly have lyme disease (I'm CDC positive), and it has gone latent. He said latent does not equal gone, and it will likely resurface as heart problems and/or dementia in my later years. Yikes! So I took the 3 weeks of doxy he offered me as a "cure". I didn't have lyme symptoms before I took the doxy, and I didn't have lyme symptoms after I took it. So who knows???

DS8 is crazy picky about socks and shoes, and pulls his velcro so tight that after a few weeks of use the velcro straps break off. We had to give up on velcro shoes, but after attempting to teach him to tie laces I was about ready to send him out barefoot. Then I made a great find. In the senior health aids section at our pharmacy I got some weird curly laces that you just have to pull through and they hold tight. They were only $2, and they really held tight (a necessity for my boy who pulls his socks as high as possible so there are no wrinkles, and then needs his shoes as tight as possible so the socks can't move.) Anyway, you might find a similar product if you check the senior health stuff at your local pharmacy or department store. I love the multi-colour "laces" that you posted! I live in Birks, or I would have to order some for myself!

I can't get your link to open, so I can't comment on the specific clinic. If you do regular lyme testing here in Ontario we only use one strain of borrelia for the WB test. There are many strains of borrelia that you could be infected with, so the tests miss a lot. Also, we use CDC criteria, which is very narrowly defined, and misses so many cases. Finally, we don't report bands. Your test will read IgM/IgG "present" or "not present" with no further information. So in our case, my PANS son's test came back IgM and IgG not present, with no further info. When we paid for testing in the U.S. we discovered he had a combined EIGHT bands, but not in the right combination for a CDC positive. He even has positive band 83-93 which is the DNA material of borrelia. I can't imagine how he could have antibodies to lyme's DNA unless he's been exposed to lyme. You need to have private testing done if you want further information, such as bands. If you do the lyme test here it is covered by OHIP and if it comes back positive IMO there's no doubt. But if it comes back negative you don't really know anything. AND, in our situation because of DS's negative lyme test the dozens of docs we dealt with (including 2 Infectious Diseases Docs) completely dismissed lyme because in their minds the negative test rules that out. Docs here are not familiar with lyme. They don't seem to understand that it is a clinical diagnosis and tests are not conclusive, but only support a clinical diagnosis. My lyme test IS CDC positive. So even with my positive test, a dog with 3 bullseye rashes, and a son with 8 lyme bands, our docs still don't consider it because he tested negative. It blows my mind that they can be so ignorant. So we see a LLMD in the US. http://www.canlyme.com/ https://sites.google.com/site/drjoneskids/lab-tests/tests-explained--dr-crist http://www.lymenet.de/labtests/brenner.htm You may also want to consider the new lyme test that cultures the borrelia directly from the blood. It doesn't measure antibodies, but actually finds the bacteria itself: http://www.advanced-lab.com/news/borrelia_culture_update.php

JMO - I would start treating ASAP if it were my child. With some positive bands and positive co-infections, and especially with her history of symptoms it sure sounds like lyme. You have already ordered Igenex and Advanced Lab's culture test, so you will have more information soon. My son has lyme - 8 bands between IgM & IgG, plus I am CDC positive, so not much doubt here. He has similar symptoms to what you listed - everything except the vomitting, bleeding gums, and hair loss. In addition to your list he has severe psychological issues, and sensory processing problems. He gets the sudden severe chest pains that literally drop him to the ground. I have never heard anyone else mention that before I read your post today. He has had various heart tests and everything is perfectly normal with his heart. It gets chalked up to panic attacks, which I do not believe for a second, because he is not anxious when this happens, but is usually exercising - running or dancing around. He completely lost his ability to read and write last year, but with treatment this year his reading quickly came back to grade level and his writing is catching up. Again JMO, but what do you have to lose by starting treatment now... A few weeks of antibiotics while you wait for the additional test results is not going to hurt her. And you just might have everything to gain. My DS8 made HUGE gains in the first several weeks, to the point that people were commenting he was not the same kid anymore. It was literally a night and day transformation. He did well for 9 months, then we had some setbacks, and just recently made some med changes and got him back on track again. It will not be easy, but I can not imagine our lives if we had not done this. The alternative is terrifying.

I just wanted to chime in with my recent vaccine experience. If I had to do it all again I would spread out vaccines, avoid combos, and be smarter about how/when/and which vaccines we did. I would not let my doctor dictate the vaccination schedule, and I would not allow vaccinations when my child is ill. I would avoid tylenol with vaccines. But I would never go entirely without vaccines. Many of these diseases are still around and still deadly. We are experiencing a pertussis outbreak in my area right now. And 2 years ago my friend's newborn daughter contracted pertussis. For several weeks it was unclear whether she would live or die. Thankfully she survived! Rubella has gone through the nearby mennonite community in recent years. And tetanus is alive and well in the soil. It doesn't need a human host to survive, so we will never get rid of it. I declined to vaccinate my sheep flock because I felt the risk was extremely low on my small hobby farm. Oops. 3 weeks ago I watched a lamb die from tetanus. NOT A GOOD WAY TO GO! So I belatedly decided to vaccinate my sheep, and accidentally stuck myself with a dirty needle when a lamb kicked me. Then that same lamb died from tetanus a few days later. This was the point when I realized my own immunizations were badly out of date. I had to get a booster, but it takes up to 2 weeks to develop full immunity. So I also had to get donor antibodies (human immune globulin). And now I will have to be screened for hep A, B, C, and HIV since I have received a donated blood product. I know the risk is extremely low, but let me tell you I'm really wishing I had kept my immunizations up to date. Watching 2 lambs die from tetanus has really softened my opinion on vaccines.

We use milk thistle.

deleted post. sorry. I had posted a link to an old thread on band 41 because I found some of the info interesting. But then I continued to read through the thread and it got confrontational and ended up locked. I didn't realize that when I posted the link because I hadn't read through all of it. I deleted it because I didn't want to bring all that back up again. Oops.

Here are a couple of explanations I found helpful in determining my Western Blot results: http://www.lymenet.de/labtests/brenner.htm https://sites.google.com/site/drjoneskids/lab-tests/tests-explained--dr-crist Did your mother have any bands on the IgG western blot? Or did they only run the IgM? Although her IgM results are not CDC positive she does have many bands and some are considered very significant (positive for lyme disease by IgeneX standards). With those results and symptoms I would RUN to a good LLMD and start treatment as soon as possible. You can get an LLMD recommendation from lymenet.org - flash discussion - seeking a doctor. Good luck!

Totally off topic, and you didn't ask, but have you ruled out metabolic disorders as part of the puzzle? Our doc kept saying my son's symptoms and behaviours sounded so much like a metabolic disorder, except that he was not vomitting. Your comments about vomitting just made me recall that. FWIW

We are happy too, although she did not really mind them at the time - they just seemed to be part of who she was. Looking back, she was pretty out of it at that time. Her rash was a single 1" diameter smooth red rash with a thin dark red border. There was a dark mark at the center, but we found no insect attached. My DH and I assumed a spider bite because we "knew" that lyme produced an EM rash. I think you can find a picture of this atypical rash (which is actually pretty typical) on Dr Jones' website. Look on the left hand side of the home page for rashes. I also had a small smooth red (maroon) rash - about 1.5 inches in diameter. It looked like a strange-coloured bruise. It did not expand like an EM rash, but slowly faded away.

I wish I could see the video - it's blocked b/c I'm not in the U.S. But after a quick google of misophonia I'm 100% certain my son suffers from this. Particular sounds can trigger full-blown rage for him - usually resulting in repetitive shrieking at the top of his lungs. Not pretty.

We have not done IVIG, but my DS8's pupils would dilate fully during his worst exacerbations. I called it "cat eyes". They would go completely black, to the point where you wouldn't even know what his eye colour was. Very freaky.

I wanted to go the more conventional route first as well. I'm not sure I'm ready to jump ship for DS8 & DS5 yet because they have been helped so much by antibiotics. Even with DS8's current set back I'm not sure if I should change course completely, or just ask our LLMD for some adjustment(s). Before lyme treatment he had never in his whole life had 9 months in a row of mental well being, so I know we have been doing something right. What a blessing it was to see his real personality and to watch him succeed! Sure, it's easy to feel discouraged just now, but I'm working hard to keep a positive attitude. We've made HUGE progress, and we're not giving up! But for DS7 abx are no longer an option, and he's still not well, so I have to figure out something.

So do both of these naturals only come in drops? Do they have a taste? I'm afraid my kids won't take it if they can taste it. They will swallow horse pills, so long as they don't have to taste the medicine.

No allergies, but several food sensitivities - peanuts, eggs, milk, and corn. We did a complete elimination diet and then went for almost a year without these foods. That was tough - corn is in EVERYTHING!!! I planted a huge garden and raised chickens, and rarely went to the grocery store at all. But symptoms got progressively worse, so we abandoned the diet. I am reasonably sure that food sensitivites are not a major player. But I could be wrong. Any other ideas?

I'm considering moving to naturals. Could anyone here share their experiences with this? My 3 boys have been on aggressive antibiotic therapy for lyme disease since July 2011. Now I'm at a crossroads. DS8(PANS/lyme) is suddenly back to square one psychologically, and we have no idea why. He was at least 90% improved, and sustained that level of improvement for 9 months, with some obvious herxing when we added/changed meds and doses. Now he's almost back to his worst with psych symptoms, although physical symptoms are still at bay. DS7's stomach can no longer tolerate the chronic meds. He's been on and off abx because he keeps getting severe stomach pains and needs a break. He has dropped weight and cries when he eats and drinks. His TSH is really high and we're investigating that further. He's been off meds now for almost a month and is finally complaining less and eating better. BUT, his joint and muscle pains came right back and he's an emotional wreck. He had an angry outburst in school last week, which is not like him at all. He was a strep carrier prior to treatment, and has been complaining of sore throat the last 2 weeks (but also has a cold). Is it strep again? DS5 is doing great! Initially he did not respond as well to treatment, and continued to have debilitating joint pains. Now this last month he's still tolerating high doses of combo meds and I haven't heard any pain complaints at all! He's been happy and active, like a normal busy 5 year old boy. SO - given the situation with DSs8&7, I'm looking for other options. Our LLMD wants us to consider Cowden or Byron White. Does anyone have experience with these? In my gut I feel like they might be helpful, but will they be strong enough?

I'll be thinking of you tomorrow!

No, it's assistance for children with severe disabilities. My DS8 has GAD, SPD, and mood disorder. I would think your DD would qualify with her diagnoses, but maybe it depends on the doctor and how they fill out the forms. We put in applications for all 3 boys with the diagnosis as chronic lyme. I had the doctor write a letter which was not required, and I also wrote a letter. I didn't feel like the forms allowed us to adequately explain our situation. They are not severely disabled under treatment. But without treatment DS8 was severely impaired, and all 3 boys would continue to get worse. We made the point that they required this treatment to prevent a severe disability. I was shocked when we got approved. http://www.children.gov.on.ca/htdocs/English/topics/specialneeds/disabilities/index.aspx

double post, sorry

All 3 of my boys had low white blood cell counts. They all have lyme, but only the oldest has PANDAS. It took several months of combo abx before white blood cell counts came back into the normal range.