momcap

Three of my grandparents are from the Netherlands, and I've wondered about my "European" band 58, and the possibility of congenital lyme being passed down through the generations. I see possible lyme symptoms in both sides of my family, but who knows, I see lyme everywhere now. I also worked one summer in a Romanian orphanage and got bit by plenty of bugs. Went hiking in the mountains, etc. And I spent a couple of weeks vacationing in Hungary. So who really knows. The world is a village now anyway - we have Chinese ladybugs here in Ontario, and Emerald Ash borers from Asia, and who knows what else. I imagine that microscopic "bugs" are immigrating too.

Wow, that sounds really high! What is included for almost $2000??? How long is the consult? I sent you an email.

We are 2 months into lyme treatment and seeing amazing improvements in OCD / germaphobia. We started bactrim for bartonella a few weeks ago, and initially we saw the same thing - very ADHD-like. Very hyper, which might even be considered hypo-manic. (He's experienced true mania in the past, and nothing quite compares to that monster.) But as we upped the dose of bactrim he got worse and worse - stabbing and stinging sensations, terrible foot pain that prevented him from walking one morning, OCD came back, germaphobia came back, etc. He was back to only wearing 3 specific pieces of clothing, and sleeping on the floor in the hallway because his bed wasn't right. He was obsessively trying to control everyone else again. It felt like we went right back to square one. We stopped the bactrim and doubled up on detox for the past week. Yesterday he was calm and focused for the first time since in weeks. He was able to get dressed normally yesterday and today. He's sleeping in his bed again. He did his homework last night. So I think we're back to where we were before going after bart - back to great improvements on lyme treatment. There are too many variables for me to say for sure what that was all about. I've been really sick the last 3 weeks with a terrible chest cold, but I'm wondering if I have walking pneumonia? I'm finally starting to feel a little bit better. Was he reacting to this exposure (PITAND)? Or was this part of treating bartonella (herx?), or did he have a bad reaction to bactrim. We had also started artemisinin when we got bactrim up to full strength. We had way too many things going on to be sure of anything, so we're starting over, one thing at a time, and at a much slower pace. Either way, we really saw those ADHD symptoms pop up when we went after bart. It's interesting that you are experiencing the same thing.

Yes, I agree this approach seems very conservative. Maybe the doctor is planning to start slowly and work up? My DS4 is 48 pounds (he's not overweight, just really tall for his age). He started on amoxicillin (1500mg) and nystatin, as well as many supplements including probiotics and vitamin D. After a couple of weeks we added azithromycin (250mg). We started by giving it every other day, and working up to every day. Next week we are adding bactrim to target bartonella. So 100 mg of zith sounds really low. It might have to do with her previous reactions to antibiotics? I would definitely want to know the doctor's reasoning. And I would ask the doctor what the long-term treatment plan will look like.

Interesting...my IgG results are almost the same as yours: 30+, 39 IND, 41+++, 58++. That's technically negative, but my IgM is CDC and IGeneX positive. PANDAS DS8 is IgM & IgG positive, and DS6 & DS4 are both IgG positive, but none of them have band 58 either. Weird.

Oh yes, mold is on my radar, and I know I have to investigate that sooner than later. My house is 1800s and has a stone foundation, which means water runs right through the dirt floor "basement". Half the plumbing runs to a sink hole in the dirt basement. Yup, mold issues guaranteed. The one thing that doesn't point to mold is that "this" (PANDAS, lyme, bart, whatever) all started for my PANDAS DS at our previous home which was all hardwood floors, air filtration system, etc. The younger 2 boys only got sick after our first summer here, and that summer our pets kept getting ticks. I never saw any on the kids, but one cat got sick and died, and our young dog turned "old" overnight. I wish I had saved and tested the ticks, but I didn't know ANYTHING about lyme back then in 2007. I just picked them off and killed them in rubbing alcohol. I'm sure my ancient moldy house can't be helping the situation at all, but I do think my kids got exposed to lyme here. We moved from the city and now run around in long grass and through the deer trails in our back bush. We didn't know anything about lyme. Ugh. The younger 2 boys have almost identical western blot bands. DS8's bands are totally different, but he's been sick since birth so probably congenital. Looking back, I'm sure I've had it since I was 12, but again, knew nothing about lyme, so I had no clue. What are the blood tests for mold? My kids have to have monthly blood draws with the high-dose antibiotics. Maybe I can get the doc to run the mold tests next month.

I wonder it that's why my kids exacerbate with dental work. The dentist uses nitrous oxide. Interesting that it's linked to glutathione. I have some reading to do!

Chronic strep, HUGE tonsils, PANDAS, high ASO for 2 years. Lots of reasons to justify it in our case.

My boys were the same - no other symptoms, so the docs kept saying it's something viral and we should just let it run its' course. Maybe it was viral, but I'm also wondering about lyme, or babesia, or ehrlichia. I wish they would have been put on a course of antibiotics back then, just to be safe. Now here we are 4 years later with chronic illness and treating with long-term, high-dose abx. I wonder if this could have been preventable. But I guess there's no use speculating. I just thought it was an interesting possibility.

I hear you! I never know what is helping and what is hurting. I feel like we are doing so many things that I will never know what is what. But 2 things I do know for sure. One is that DS8 has made huge progress since tonsillectomy and starting lyme treatment. Again, not sure what to attribute that to since we did both at the same time. Probably both? And the other thing I know for sure is that if we stop antibiotics he will end up hospitilized. He was on prophylactic dose amoxicillin most of last year for PANDAS, and twice we tried to stop. Both times within 24 hours (!!!) he was a raging monster. You were successfully able to remove everything this summer?! How wonderful! Are your kids still off everything? Or did you have to go back to antibiotics with strep season returning? I look forward to the day that my son has healed enough to start weaning him off some (all?) of these things. Right now between meds and supplements he's taking 30 pills a day!

Here's a question I've asked our doc and I still don't think I understand the answer: How do you know the difference between a herx, a bad reaction to a medication, or just a regular symptom? DS8's had agitation and aggression as main symptoms all along, so I have no idea where to place that. It has been mostly gone the last few weeks before adding bactrim, then came back gradually while we weaned up bactrim, and once we got up to full dose of bactrim it was terrible! It could be a reaction to the medication. IDK!! The stinging sensations are new, so I guess that's a herx? The sore feet are new too, but he's had severe pains in his ankles, knees and hips that have prevented him from walking before. Feet is just a new place for an old complaint. So confusing! All these complaints stopped within 24 hours of stopping the bactrim. ??? Overall he's improved by leaps and bounds, so I still think we're on the right track, just trying to understand it all and figure out how to move forward without paying for an appointment every single time I have a question. Would love any thoughts/advice!

Hi Wilma, How is your DD doing? DS8 got up to a full dose of bactrim last week and he got really agitated and aggressive. He also started getting stinging sensations and then his feet hurt so badly he couldn't walk. So we also had to back down and stop the bactrim. We're going to add it in more slowly, every other day only for a bit and see what happens. Just wondering how it's working out for your DD? Haven't seen you on here in a few days. I hope everything is okay!

I always think of something else I should have said after I post... I should have also stated that DS had HUGE tonsils, swabs positive for strep regularly (and negative regularly too), and has ASOs in the 500s for the past 2 years, which started with scarlet fever. So there was plenty of evidence of strep in his tonsils.

My DS8 is making AMAZING progress right now (OCD and germaphobia almost gone, verbal tics completely gone, able to attend school, etc). He started supplements for lyme at the beginning of July, then he had a tonsillectomy August 4th, and then switched to different and higher dose antibiotics for lyme the next week. So who knows which is what. I don't care. I'm just so excited to see him returning to health! He had a bad reaction to the anesthetic - ripped out his I.V. and was thrashing around inconsolable for an hour. I was really worried that it had triggered a bad exacerbation, but after the anesthetic wore off he settled and he did not have a PANDAS episode. We added Bactrim to his lyme treatment last week, targeting bartonella. He got really agitated and aggressive, had stinging sensations, and his feet hurt so badly he couldn't walk. So we have to back off for now, and go more slowly. His major issues right now are bartonella and constant exposure to strep (DS6 is a carrier). It feels like 2 steps forward, 1 step backwards, but the tonsillectomy seemed like 20 steps forward. I think it has the potential in SOME cases to make a huge difference. We felt it was worth the risk in our case because DS was doing so badly - not attending school, debilitating germaphobia, verbal tics, mood disorder, etc. We were willing to try anything.

There's been news lately about a "new" borrelia in North America. I'm finding this very interesting. According to a Russian study, this borrelia is not associated with a bullseye rash, and it causes very high fevers that relapse. This sounds like my kids! The first autumn after moving to our farm they got sky high fevers (up over 106 and rushing to the E.R.) This happened on and off that whole winter. I wonder... But they test positive to borrelia burgdorferi, so I guess it doesn't really matter. I just wonder if the treatment and outcome is any different, or if they could have both? Any thoughts? Do any labs offer tests for different strains of borrelia? http://www.healthzone.ca/health/newsfeatures/article/1060669--new-tick-borne-disease-discovered-in-canada?bn=1 http://www.nytimes.com/2011/09/20/health/20tick.html wwwnc.cdc.gov/eid/pdfs/10-1474-ahead_of_print.pdf

All 3 of my boys had fifth's disease as toddlers. I'm sure all of these various infections, bacterial and viral, contribute to the overall picture.

DS8 sometimes had red cheeks - looked like they had been slapped, or he'd been out in the cold wind. He has not had it in the past year since being on antibiotics. He ALWAYS had bright red ears. They are gone too.

Here's a link to an explanation of the lyme western blot test: http://www.lymenet.de/labtests/brenner.htm The strength of the band is indicated by + (low) to ++++ (high). IND means they see something very weak at that band. I guess it's like a half plus. ??? Here's a listing of information by bands that I copied from another lyme forum: List of Western Blot bands and explanations (from various sources) 9 cross-reactive for Borrellia 12 specific for Bb (Lyme) 18 flagellin fragment (Lyme) 20 may be cross-reactive for Borrellia 21 unknown 22 specific for Bb, probably really the 23/25 band 23-25 outer surface protein C (OspC), specific for Bb. Can be an early band. 28 OspD. Specific for Bb (Lyme). [23-28] Potential for Central Nervous System (CNS) involvement. 30 OspA- substrate binding protein- common in European and one California strain. Check for mycoplasma. 31 OspA, specific for Bb (Lyme). 34 outer surface protein B (OspB); specific for Bb (Lyme). 35 specific for Bb 37 FlaA gene product- specific for Bb (Lyme). 38 cross-reactive for Bb 39 BmpA- a major protein of Bb flagellin; specific for Bb- Sometimes found in those with joint involvement. It is the most specific antibody for borreliosis of all bands. 41 flagellin protein of all spirochetes. This is usually the first to appear after a Bb infection and is specific for all Borrellia. Can be positive due to relapsing fever, oral spirochetes and syphilis. Flagella or tail protein. Flagella is used to move Borrelia burgdorferi from point to point. Many bacteria have flagella. This is the most common borreliosis antibody. 45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis). Heat shock protein. This helps the bacteria survive fever. The only bacteria that does not have heat shock proteins is Treponema pallidum, the cause of syphilis. 50 cross-reactive for all Borrellia 55 cross-reactive for all Borrellia 57 cross-reactive for all Borrellia 58 unknown but may be a heat-shock Bb protein- Check for viral infections 60 cross reactive for all Borrellia 66 Oms66- cross-reactive for all Borrelia, common in all bacteria- Check for E-coli 83 high molecular mass protein. Specific antigen for the Lyme bacterium. This is the DNA or genetic material of Borrelia burgdorferi. It is the same as 93, based on medical literature. Laboratories vary in assigning significance to the 83 versus the 93 band. 93 an immunodominant protoplasmic cylinder antigen, associated with the flagellum. Possibly the same protein as in band 83, just migrates differently in some patients. NOTES: When reporting bands, the reporting laboratory marks bands with the following indicators of intensity: - Not present + Low ++ Medium +++ High +/- Equivocal = indeterminate (present, but not as intense as the "Low" reading) Other bacteria besides Borrelia burgdorferi may produce the 45, 58, 66, and 73 kDa bands.

oh momcap -- hope you didn't take offense -- i worded it wrong -- of course, i meant didn't do anything that could tie to the turn around. you're info is so helpful. very similar! No worries, not offended at all. I knew what you meant! I just wanted to make that important distinction.

Yes, my DS is in the regular classroom, at the same school where he struggled so much last year. We are not using the special school at all. It helps tremendously that he has a teacher this year who really cares about him and understands special needs. I had to fight to get him full time one-on-one support from an E.A., and he does take a break from the classroom once in a while - not even every day. I wouldn't say we didn't do anything, I would say we did EVERYTHING, but nothing helped. We did every kind of therapy, saw every kind of doctor (medical and psych), went to major teaching hospitals in 3 different big cities, enrolled him in a children's mental health clinic at a teaching hospital, even tried psych meds. Nothing helped until his body started healing due to the treatment for his particular infections (strep, lyme, bartonella, babesia). He still has a long way to go, but what a difference already. His germaphobia is gone, his OCD almost non-existant. His verbal tics are 100% gone. His defiance is decreasing. He is able to engage in a therapy session and actually get something from it now. I guess we were really lucky in Kindergarten when he did the kicking, screaming, shoe-throwing, that his teacher grabbed hold of him and told me to leave. I had that person on the other end. He hid under a desk his whole first day (full day kinder), and I cried at home, but things got better little by litte, until getting much worse in grade 2. BTW - he refused to speak at school from September to April in Kinder. I don't know any strong willed kid who is strong enough to refrain from speaking for 8 months. That goes so far beyond an effort of the will. Anxiety is a HUGE disability and not just something that a child can decide to make go away. Have you tried talking to the school directly about having a person there who is willing to take him on? They might be afraid to try for legal reasons? Maybe they would be willing with your permission? IDK. I really like LLMs suggestions, which my son could make use of now. But back then he went into a fight-or-flight panic and there was no ability to reason at all.

Smartyjones - your post sounds so much like my DS8 - avoidance, refusal, defiance, "I hate school", extreme difficulty with the physical act of writing. So many times I have fallen into the trap of my will against his will, and that never ends well. It's like I keep having to learn that lesson over and over again. And yet somewhere underneath all that anxiety there is a strong-willed boy, so finding a balance is like walking on a tightrope most days. I guess the thing is to decide what your non-negotiables are, discuss this clearly with him, stand your ground no matter how big the fight is, and be okay with letting the rest go. The other things will come as he heals. I never thought I would see the day, but it's happening for us now as DS is healing and the defiance is less and less. Last year in grade 2 he had a very difficult time with his teacher. It became a constant battle of wills and very much her against him until he was no longer able to attend school. I'm not blaming it all on the teacher. Certainly my DS has major issues that are extremely challenging to deal with. In the past DS has been diagnosed with separation anxiety, selective mutism, social anxiety, general anxiety disorder, and OCD. The OCD was not obvious until part way through last year. We've been in therapy for anxiety since he was 3 - both for him, and for me helping him. The doctor's advice to the school is to have regular breaks, a safe place to go to, a safe person to go to, and occupational therapy. We tried everything and nothing worked. We tried play therapy, home therapy, school therapy. Nothing helped much. In meetings with the school the issue of "can't" versus "won't" came up again and again. The school staff kept saying that he is defiant and it's all behaviour. The therapist I brought to the meetings kept insisting that his behaviour is anxiety-driven and that he truly can't meet their expectation, so they have to change their approach to him. Things got worse and worse until finally I ended up homeschooling. I don't think I did a much better job than the school. I found myself wondering how much is can't and how much is won't. We were constantly in a battle of wills just to get a few minutes of basic academics accomplished for the day. I was so frustrated. He was so frustrated. And most of this centered around writing. Some days he refused to put anything at all on paper. I was at a homeschool meeting on special education when I finally realized that his anxiety is just like a learning disability and I finally believed it really is an issue of ability. He can't function in the classroom the way he is expected to, and he can't put things on paper the way I want him to. And it's a vicious cycle reinforcing his anxiety since he knows he can't perform, but doesn't understand why. He knows that people are constantly putting impossible expectations on him and then getting angry or frustrated at him for failing. No wonder he refuses to even try anymore. Anyway, back to the LD presentation - the presenter talked about learning disabilities and how there is no motivation, positive or negative, that will make a LD kid learn the way the teacher wants them to. They just can't. Teachers try to motivate them with rewards, then get frustrated when they fail, then threaten them for not complying. Nothing works. He said the only way to educate these kids is through a qualified teacher who can teach them a whole new way to learn that fits the way their brains work. It was like a lightbulb went off for me. I realized we needed a different fit for him, and someone uniquely qualified to teach him in his own way. We finally found a program at a special school that we thought would fit, but at the same time discovered lyme and co-infections. Long story short, DS8 is 3 months into lyme treatment and healing. He is attending his regular grade 3 classroom (with accomodations) and is successful! He's engaged and thriving, catching up on academics, and we didn't end up needing the special program at all. I don't know if any of that helps. I do know that if the school falls into the trap of battling his will then everyone will lose. And if you feed his anxiety then it increases. So you're on the tightrope. I hope and pray you find healing for him!

Do you have any studies or further info on low WBC indicating bartonella and babesia in lyme patients? Or is that anecdotal? All 3 of my boys have slightly low WBC and I have been trying to figure out what that means. They are all positive for lyme, and we suspected bartonella and babesia before we did the blood testing, just based on symptoms. What about the white blood cell parasites like anaplamsa? Do they decrease WBC too? I'm interested to learn more. Thanks!

Sure! He's on a pretty aggressive antibiotic schedule - although we're only part way into it and are still adding 2 more antibiotics. Our LLMD also says we will be changing antibiotics later on too. He's being treated for yeast with nystatin and we're adding in diflucan this week because he keeps having yeast symptoms - (itchy bum, itchy skin, bladder problems, moody, hyper). By "integrative" I guess I mean all the supplements. Here's all the supplements he takes so far: JuicePlus - nutritional supplement Omega 3 Antioxidants - right now we're using Zambroza drink but he hates it so we'll have to switch Probiotics 100 billion (avoiding streptococcus thermophilus, just in case) S. boulardii - good yeast Vitamin D (his blood tests showed deficiency) Detox - liver, bowel, urinary, enviro, lymph (all products from nature's sunshine) Artemisinin (for babesia) He's already taking 30 pills a day, and will be increasing as we add new things. It's a LOT, and requires a schedule to keep antibiotics away from probiotics, nystatin away from yeast, etc. It's pretty rough, but so far it seems to be working wonders.

We use a liver detox supplement from Nature's Sunshine called Liver Cleanse Formula. So far so good, but we're pretty early into treatment, and still have to add in zith and a cyst buster. So far he's on a pile of supplements, high-dose amoxicillin and bactrim. BTW - Some supplements like artemisinin can cause liver enzymes to rise.

Sure! He used to be able to eat incredible amounts of food. This has always been the case. I recall when he was 9 months old he would eat a whole banana, and then polish off an entire box of Kraft dinner and still cry for more. At 18 months he would out-eat me at the Pizza Hut buffet. When he started school I would pack 2 lunch bags full and he would still come home complaining he was hungry. He always ate 3-4 times more than other kids his age. I think his thyroid must have been off because he's never been overweight. He's at the top end for weight, but he is in the 95th %ile for height too, so the doc says that's normal. Thyroid testing came back normal. IDK. Now when he tries to eat a crazy amount of food he feels sick. I keep telling him this is normal, and finally his body is working properly. I don't know if it's purely thyroid, or if his brain is just getting the message from his stomach now. I've wondered about a disconnect between his brain and body for all of his senses. When he was a toddler he couldn't feel pain for 2 years. That one was really scary. When he was 4 he couldn't smell for a year, then his sense of smell came back on overdrive and he was constantly overwhelmed. For a long time he listened to everything full-blast, complaining he couldn't hear, even though hearing tests came back normal too. His sense of taste changes from time to time and he no longer likes his favourite things and complains that everything tastes different. So I don't really know what is going on with the eating thing. I just know that he is eating normal portions now, and feels sick if he tries to eat a huge amount like before.