momcap

Yes, I TOTALLY agree! I've had several very lively discussions with my doc about my "carrier" son. Just because he doesn't have puss on his tonsils and a fever, and his strep doesn't clear with a regular course of antibiotics, doesn't mean we should just call him a carrier and give up!! Every single swab he's EVER had is positive, so we don't need to guess where the strep is. Clearly it's in the back of his throat, and likely elsewhere too. He had "migraines" and "allergies" which I believe was strep in his sinuses. They both cleared within 2 months of starting lyme treatment. My PANDAS son had major and continuous improvement when my "carrier" son was on abx along with him. Unfortunately, we were unable to continue abx with carrier DS, due to severe stomach pains. Ever since we took "carrier" DS off abx, PANDAS DS has been struggling. And at about 6 weeks off abx, carrier DS got that peculiar stink back on his breath. Ugh. At least the headaches haven't come back (yet). So frustrating! And my family doc doesn't believe a word I'm saying because it doesn't make sense medically. Okay, done ranting... for now...

Same here. We are all positive for lyme, all positive for strep off and on, including 1 strep tcarrier, but only 1 with PANS/PANDAS.

Is there any way to connect with other homeschoolers in your area? I had to homeschool DS for most of grade 2. The best resource I had was other homeschooling parents. They invited me to their meetings, helped me with legal paperwork that the school would require, informed me of my rights, and directed me to lawyers that specialized in this type of thing. They helped me find great curriculum, and in general just supported me along the entire journey. They had already been there and done that, so any questions I had they were prepared for. I informed the school district that I was homeschooling with the goal of getting DS back to class when he was able. The district actually worked with me and didn't require all the legal stuff I was dreading.

Just a suggestion, and I know it's an expensive one, but have you thought about testing other family members for lyme? If one person has a questionable western blot, but other family members are obviously positive, then it is easier to make decisions. My PANDAS DS had many positive bands (IgM & IgG positive via Igenex) and our decision was pretty easy to treat for lyme, but that was backed up when I tested myself. I don't have current lyme symptoms, but when I read about lyme I realized I had many of the symptoms in the past. So I got tested and it came back CDC positive. No room for doubt for me. We realized all family members had possible symptoms, and when we tested DH and our other 2 boys, they ALL came back IgG positive. We don't live in a lyme endemic area either, and don't recall ANY of us ever having a tick bite. ??? Treating lyme isn't an easy road, not that treating PANDAS is either. But you need to be confident (or desperate) in order to move forward, and perhaps testing other family members will give you that confidence, or help rule lyme out.

My 7 year old non-PANDAS son had nearly constant migraines. He was always holding his eye or forehead. Family doc diagnosed migraines and allergies, gave us tylenol and nose spray, and that did nothing. I pushed the issue and went on to discover he was a strep carrier, possibly had sinus issues(?), and he tested IgG positive for lyme. After several months of combo abx the headaches went away. He stayed on abx for 10 months, has now been off for 4 months and the headaches never came back.

I agree with the previous posters. I think lyme can cause PANS, but I highly doubt it could be the ONLY cause. I look at it as 1 factor in the snowball that hit my son's immune system. I like the analogy (LLM's, I think?) of peeling back the layers of an onion - PANS, lyme, mycoplasma, other co-infections, pyroluria, methylation issues, mold, ??? I believe that there have to be many factors that snowballed together to create this nightmare. I don't think it's exactly the same for everyone, but there would be similarities, hence the high number of us PANDAS folks who have discovered lyme. That must be 1 common factor, but certainly not the only factor, and not a required factor. There are lots of other infections that can cause similar problems. Just my 2 cents...

DS8 had possible tourettes on his laundry list of psych disorders. He had pretty severe vocal tics every day. The only possible motor tic was an occassional eye blinking/rolling thing, but we only saw it a few times ever. So that prevented a true Tourettes diagnosis. The vocal tics resolved 100% within a couple weeks of starting lyme treatment. We spent the year before that treating PANDAS with single antibiotics, but the vocal tics had continued and even got worse. He did have other classic lyme symptoms too - joint pains, muscle pains, bone pains, sensory issues, bug crawling feeling, tingling feeling, etc. He had a wide range of symptoms that would come and go, but pain of some sort was a constant.

At the risk of stirring things up again , just wanted to say that I live on a farm. I have to SPECIAL ORDER feed for my chickens that does not contain antibiotics right in the feed. Standard chick starter comes with antibiotics in it. That's what farmers are feeding the chicken you buy at your grocery store! When one of my sheep got sick I walked into the farm supply store and purchased a huge bottle of penicillin for a few dollars. All I needed was 1 dose, but it only comes in huge containers. I didn't have a prescription, never saw a vet, and don't even have a legal farm number because my hobby farm is too small to qualify as a working farm. So anyone can walk in there and purchase antibiotics. Yes, there is a problem. I don't know what the solution is, because in commercial barns the animals are so crowded together and never see the light of day. They would probably all die or pass on diseases to humans if they didn't use antibiotics. The whole system is bad, IMO. If it was my kid, I would still do the 30 days of abx, even though I know there is a bigger problem going on in the world. I would not take the risk of sacrificing my child's health for the greater good. I guess I'm just selfish. That said, I do believe you have a valid point Red, I just know I couldn't take that chance with my own child. If you had asked me prior to dealing with chronic lyme, I would have told you a whole different story. I refused antibiotics, even when the docs thought they were necessary. Let the immune system do it's job, etc. Oh, how I wish I still lived in that world.

Bill, I also had a "bruise" around my bite. Definitely NOT a bullseye. It was only about 5 cm diameter in a perfect circle and it was a strange deep reddish colour. I am also CDC positive, but it wasn't until 5 months after the bite that I learned about lyme and realized that was probably "it", and requested my Western Blot test. My 3 boys are all positive and we don't remember any of them having a tick or bullseye, but a bruise on a little boy who spends his days on a farm - I would have hardly noticed and certainly not paid any mind.

This is just my opinion, but I think the problem with testing a sample (blood, urine, CFS) directly for the lyme spirochete, rather than testing for antibody response, is that you have to actually catch the lyme spirochete in the sample that is drawn. It`s like the proverbial needle in a haystack. However, some are having success with the Advanced Laboratories blood test, which cultures borrelia from a blood sample. I think you can find it here: http://www.advanced-lab.com/ I like the idea of these more direct tests because it proves active, current infection at the time the sample is drawn. But like I said, you have to actually catch it in your sample. So there would definitely be false negatives still. From what I`ve read about the testing, there are certain times of day that borrelia is more likely to be actively travelling around in the blood. Not sure if that would apply to CFS or not.

My DS8 (PANDAS/Lyme) has had horrible pain since the age of 3, sometimes so bad that he couldn't walk. This symptom is what made me look beyond PANDAS and discover lyme. He started lyme treatment at age 7. Pain complaints continued with treatment, and were often severe in response to a med or dosage change. After 10 months of aggressive treatment with high-dose combo antibiotics (orals) the pain complaints finally stopped. He hasn't had a pain complaint now in 3 months, but we are still treating for psych symptoms. That's just our experience so far.

My LLMD told me I need at least 3 meds to beat lyme - 1 for extracellular lyme, 1 for intracellular lyme, and a cyst buster. Which ones to take and when depend on symptoms, and we have made changes along the way. In my opinion, I don't think doxy by itself will be enough for you to beat lyme. But there are different approaches to lyme and we have chosen an aggressive one. Have you asked your doctor what his long term plan or treatment approach is? Perhaps he is planning to add a cyst buster to your treatment later on.

Rowingmom, is LabCorp in the U.S. only? I want to do the MTHFR testing, but not sure if I can get it here and don't see the doc until September. I don't want to bother with the appointment if I can't get the tests here in Canada.

I looked at pictures of both, and it definitely looks more like melasma. One of my other kiddos picked up ringworm (also fungal, not an actual worm) this summer from his cousins. I might try the anti-fungal cream I got for that, just to see if anything happens. I don't think it is tinea versicolor, but it might be worth a try. Thanks for the ideas!

I think I got lyme when I was 12 - which would make it 22 years for me. I got really sick, saw lots of docs. No real answers. Elevated markers for JRA (but not high enough to diagnose), Raynaud's, RSD, depression, maybe fibro?, some problem with a vertebra possibly causing chronic pain? I was never treated on purpose, although I later took tetracycline for a couple of years for acne. After that I was feeling pretty good. I did not have a lyme test until last year (it came back CDC positive for IgM). If I look at Burrascano's symptom checklist I have very few symptoms, and the ones I have are not difficult to live with - swollen glands, sore throat - wondering about mold issues in the house. But I have experienced many of the other symptoms in the past and found myself at times very debilitated. The brain fog was BRUTAL and I hope to never experience that again. I clearly recall feeling like I was hollow/empty, or like I was watching my life, feeling like I was outside of myself, or like you say feeling like you're not on the planet. It's hard to explain. I got bit (again?) in Aug 2010 and was a living zombie for several months - along with a red circular rash, brain-crushing constant headache, swollen knee, sore throat, and high fever. I still didn't know about lyme then, so after going to the E.R. 3 times to no avail I decided I must have mono again, since it felt the same. It felt like I was looking at the world from 6 feet away, just totally disconnected from everything. After several months (no antibiotics), I just got better. No symptoms. But after the positive lyme test last year, I took the 3 weeks of Doxy that is supposed to cure everything (yeah, whatever). I felt fine before I took it, and I felt fine after. Doesn't seem like anything is different. I have decided not to pursue aggressive treatment for myself at this time, because I have so few symptoms, and with my children being treated I don't want to rock the boat.

I agree, this could be a herx if she had recently started clindamycin. DS had some horrible herxes with med additions and increases - particularly from rifampin. He would get extremely agitated, sometimes totally berserk. Rifampin hit him so hard he couldn't walk for a day. Then the next day all h@ll broke loose. But after riding out the herx - the worst one lasted 2 weeks for him - we always saw great improvement. I know exactly what you mean about the validation when a professional witnesses what you've been saying. I was worried too. Near the beginning, DS could hold it together in front of other people and saved his worst for me. Doctors would give me that condescending "sure I believe you" kind of nod, that drove me crazy! I took to secretly video-taping a lot of DS's episodes because I was afraid of the same thing. Eventually he just got so sick he couldn't hold it together for anyone anymore so the videos were no longer necessary. Then docs started taking me seriously, but just ended up referring him to psych. Getting a PANDAS and then lyme diagnosis was an uphill battle. Hopefully having a son already diagnosed with PANDAS and having access to professionals like Drs L & T will make the road so much easier for you and your daughter. Thinking of you!

My DS8 had many of these behaviours - extreme anxiety, fight-or-flight type reactions to seemingly insignificant or imagined causes, rage, aggression, self-injuring, OCD, debilitating phobias, agoraphobia, crying jags, paranoia, auditory hallucinations, etc. He also tried to jump out a 2nd story window and I had to restrain him which made him panic more. Oh, your post brought back many horrible memories. Countless p docs, every psych label you can imagine, psych meds, etc. Nothing worked. Until he ended up on amoxicillin for strep throat. On days 4-10 of that course of amoxicillin we had a happy, calm child. The difference was so dramatic that it was frightening (kinda the reverse of the PANDAS onset experience). That led us to PANDAS, and later to lyme. A year ago he started aggressive combination antibiotic therapy for lyme, bartonella, and chronic strep. Within 2 months he had changed dramatically. He no longer met the criteria for his alphabet soup of psych labels. His psychiatrist discharged him. He had an amazing and successful year. It's still a work in progress, but looking back to 12 months ago I can't believe he's the same child. If something in your gut is telling you to pursue PANDAS, then definitely listen to your gut!

Yes and no. All 3 of my boys took bactrim. The younger two (5 & 7) took it for lyme/bart along with several other meds. They did well on it. They are both off antibiotics now after 12 months. My oldest DS(8) took it for lyme/bart/PANDAS. He was a nightmare on it. We tried weaning up slowly. Then even more slowly. We took a pause and tried again. We doubled up our detox efforts. We stuck with it for about 6 months and were never able to wean up at all. Even at a tiny dose he would get very agitated. So eventually we decided this was a side effect and not a herx. We gave up on it and switched it out for rifampin - which gave him a horrendous herx and then the best improvement we had seen in a long time. You never know until you try.

I would love to hear how it goes! Same story here - we don't have lyme in Canada either - ha ha. Apparently the ticks don't have passports so they have to turn around at the border. It boggles my mind that people who are intelligent enough to become doctors don't stop and think about some of these things. We also had to send our blood to the U.S. and go to a U.S. doctor. Best of luck on Cowden and we're excited to hear about it!

Something our LLMD told us to do to lessen herxing is to start with 1 antibiotic and wean up to the full dose over several days or even a couple of weeks if necessary. At the same time we supported the body with herbal detoxes. If herxing was minimal or manageable at that point then we added the next antibiotic and weaned up slowly, and then the next, etc. The overall treatment takes longer this way, but there is no way we could have thrown everything at DS at once and survived. I don't know if Dr. B would support this approach, but it has worked wonders for us.

Ya, it looks like it could be. Very interesting - hyperpigmentation from long term abx. I wonder how common that is?

DS8 was born with a blotchy section of skin on the side of his knee that looks like permanent goosebumps. No colour, just raised bumps exactly like goosebumps that won't go away. The doctor assured me it was nothing to worry about. Shortly after starting to treat lyme (12 months ago) this patch turned a very light brown and the bumps are less noticeable. Then I noticed another light brown blotchy patch came up on the side of his face, this time no bumps, just patchy colour. In the last 6 months a similar patch has shown up on my 5 year old's face. Both boys have very elevated ASO, lyme, and probably bart. DS8 also has PANDAS. Has anyone here experienced anything like this or have any ideas on what this might be? GP/PCP is not concerned at all. LLMD hasn't seen anything like it. I'm convinced it's TBI related because of the changes with treatment, but perhaps that's a coincidence?

Biaxin was really rough for DS. We got through 1 month of it, and had to change game plans. He was raging, got fevers, rashes, and his knee and elbow joints swelled like balloons (first and only time that happened). Very scary. I keep wondering about revisiting it now that (I hope) his bacterial load is down. It just seemed like it hit way too hard when we tried it at the beginning. I sure hope it works wonders for you! We had a similar experience with risperidone - helped a little bit for a little while, then not at all.

Is something in that mix going to get intracellular lyme? Our LLMD says we have to go after extracellular lyme, intracellular lyme, and cyst lyme all at once to finally beat this thing. That's what we are doing now - or were doing before this stomach bug. I'm hoping to get back on track tomorrow. Well good luck for sure. Don't we all need a little extra of that?!

No, I could not find ANYONE with a personal story of positive feedback on Cowden. Given the cost and lack of personal testimonies I didn't bother. So we continued with antibiotics without our GP's approval. PANDAS DS is doing okay, but had a backslide in the spring and never got all the way back to the level of wellness he was at in the winter. We are thrilled with his overall progress - Physical symptoms are 100% gone (!!!!), OCD is minor now, but germaphobia & mood lability are stubbornly hanging on. I took him off abx last week because he caught a stomach bug, and today he had a berserker fit - so obviously we haven't arrived. I hope someday he can function without abx. So frustrated, but also happy things don't even compare to a year ago!