SSS

I am also in CA, with a 14 year old son. I got the scary letter sent home, skull and crossbones type, telling me they would kick him out by so and so date unless I showed proof he had another, recent DTAP. No where on that flyer did it talk about exemptions, which is our CA legal right. I called, told them personally I'm waiving, they so okay, sure, sure, but then I got another threatening flyer as the date got closer. This time I drove to the school. They looked him up on the computer, said oh so sorry, let me just 'uncheck' this- we then had no problems. By the way, he was completely and fully vaxed as a child, but based on my history as these children's mother, I refuse to take a risk of setting something off in them while under my legal care ( age 18) My 2 young girls are also vaxed, but the youngest (non PANS) is missing 2 boosters, I refuse. It's been 2 years since she has had a shot (5 years old) I'm sorry, here is my point: They try to scare you. They will not tell you that you have a legal right for exemption. That in fact, you can flip over the 'yellow vax card', and in small print, you can sign that you decided to waive further. I have even googled 'CA exemption form for vaccines' and printed it out- professional document, and I signed it and put it in my young girls files at the elementary schools. Sorry so long, hot button topic for me.

My husband was skeptical at first, too. I mean, the test did say negative, right? Plus, where we live, we do not visually see ticks- and, over the years with dd, we had been through so many 'things' DAN! Dr.'s, tried homeopathy, the whole PANDAS regime with 2 IVIG's, sensory processing disorder OT, many other things and protocols, bio-med, special diets (she was evaluated for autism, they said she was not autistic) and now here I come saying Lyme disease. I made DH come with dd and I to our first initial appointment with an LLMD, with all our testing for dd in hand, the labcorp, the Igenex (which I was able to get our then DAN! Dr. to sign for, so I already had this test to bring.) It sunk in for him at that appointment. Also, I wanted to mention that my daughter never had a severe regressive episode- oh yes, we had some crazy waxing and waning with OCD, but she never had regressions from vaccines- and as an infant, signs were there from the get go- although maybe I could argue the Hep B vaccine, given the day after birth, in 2005 still had the mercury in it, BUT, her history like this gave him the insight it was gestational - which was why he insisted I get tested. As for treatment, I am determined to get rid of this- doing my best. I'm stubborn, tough and old, so I think in a sense I am better able to get deeper with the treatment, than say a child, and maybe it is harder still for the ones born with it.

I think I threw my guts on this forum last month about my dd becoming violent at home- escalated to the point of unacceptable. It was happening on and off antibiotics. Went off antibiotics, started Risperadol low dose, things got a lot better at home (this is the girl who is perfect at school.) I was giving GSE (for yeast) and OLE, probiotics, support vitamins- we seemed 'okay' with fits and starts, but shorter, not where we were (he!!) At the 1 month mark, about 5 days ago, her fevers returned, along with complaints of leg, feet, and eye pain, behavior again escalating. Think I found her Lyme cycle! Can't find mine for the life of me. So back to the LLMD in a week and a half, piggy backing our appointments. In the meantime, not sure what to do- put her back on Amox. (which was where we left off) and it is suppose to go with Biaxin, which I guess I'll try to add back in too, over the weekend. Still giving GSE. So, that's our update. Still on low dose Risperadol - seems to be either tamping down her very elevated dopamine and seratonin - or I don't know how it is helping, but from where we were, we can't go back to the violence at home. Be interesting to hear what the LLMD will say... Thanks for listening, that's our update. I guess you can run, but not hide from this disease.

Here is what I have read, and personally experienced, about a positive band 23, which is a Lyme only bacteria band. I originally did a labcorp western blot on dd. It came back band 23 positive, nothing else, of course CDC negative. I researched and researched. One well known LLMD wrote: See the band 23 positive, it is Lyme. Another well known LLMD wrote: Typically through labcorp, band 23 will be the one that comes up. I was blown away, shocked, you know the drill. However, I went on to do a full on Igenex testing on her, thinking I'd be very remiss if I didn't follow up. This came back lit up like a Christmas tree. Then made an appointment with LLMD to get their opinion - gave my dd's whole history, from when an infant (poor muscle tone, sensory issues, etc.) LLMD said to me: YOU need to be tested. I came back positive PCR Lyme in my blood, and high positive Bartonella. So, we are both in treatment. I get where your husband is coming from- the reality is hard to grasp, especially when you have no memory or history of pulling off engorged ticks, never remember a bulls eye rash (which only shows up in 50% of the infected, by the way.) But it is really serious. I'd say, please follow through. Sending good thoughts----

Wow. Wishing you good thoughts and recovery with your new protocol - thanks for sharing, always learning.

Wow, I am so sorry. Just from my perspective, yes, it all sounds like Lyme and co-infections to me. Here is me being motherly, and my own experience: You guys need to take it easy. Now that you have had your initial appointments in person, can you now do phone appointments, and get anymore lab testing done locally, your doctor's mailing them to you? And they can phone in your prescriptions to your local pharmacy. Are you almost done with school? I have really simplified my life- I know not everyone can do this, but then again, it becomes necessary. I take care of my 3 kids, and the house (sometimes calling in the housekeeper) and keep my marriage well. And that is it! My kids are not in a bunch of activities. We are ill, she and I, this is life right now. And it still is good (besides the Lyme, ha ha) Money is tight, but we work it out. Not to sound dramatic, but our old LLMD was a 3 hour drive each way- both dd and I - so you are talking intensely for an hour straight, taking notes, labs- then a 3 hour drive home. It would utterly exhaust me. I wasn't allowed phone appointments, not really- it was hard. I got very lucky (CA) and was able to find a new LLMD much closer, who is a better fit. But try to see if you can do phone appointments now- Write down things- I have separate notebooks for dd and I- fresh page every day, I write down what time and which vitamins, supplements are given- I keep my meds on a top cabinet, hers in a lower cabinet- Please, please, take care of yourself, rest!

Michael - I've tried the D-lactate free Custom Brand about 5 times with my dd (bought 2 separate bottles of it over the years, because I kept hearing great things about it, too, and my dd does not have autism either) Every time I got negative reactions- I kept trying, because those bottles were $$$ I didn't think it was die off- could be wrong, but I felt like 'No' on this one- ended up giving both to DH, since I don't do powdered probiotics, he was fine. She responds well to the 11 strain- I like this one a lot- and, have a bottle of the CP1 capsules- Not much help maybe, we all respond slightly different I guess.

**It is no longer in the IVIG solutions!** It used to be, years ago. Our last year treating PANS/DAN! Doctor, who is a little bit famous, told me a story of a famous couple who had a son, who was diagnosed with Kawasaki disease as a very young child- the child started to receive ongoing IVIG's, when they still had thimerosal (mercury preservative) in the solutions, and the child became full blown autistic, seizures, so, so sad and terrible! They took out all the thimerosal out of the IVIG solutions many years ago. But make yourself feel better and ask if you (your child) are going in for IVIG.

Sorry, I wanted to add something about the C4a testing: My test was sent to the Jewish Hospital (lab) where I got my 19,000 result. We did a blood draw for my dd's to be sent there, the Jewish hospital lab screwed up the blood specimen, was told we had to do another blood draw. Our LLMD's office at the time was far away (they did the draws there for the Jewish hospital lab) None of the local labs in my area, labcorp or Quest, would do the draw and send it there- I spoke to labcorp, they said they had changed their method on their C4a test, it would be the same as the others. So, had another blood draw on dd for labcorp C4a, it came back normal, LLMD did not believe it, but I refused to do a 3rd draw for this test (and pay for it.) Also, on inflammation, about 3 months ago found out I have a high intolerance to gluten (not Cealic) went 100% gluten free, believe this also really helped inflammation.

My C4a was 19,000!! I really freaked. Kept waiting for my head to explode until my next LLMD appointment. I was told it was an indicator of chronic Lyme, possibly mold involved. To me, it is like the CD57 test- all pieces of the puzzle. Haven't had a C4a test again (that was 9 months ago) but have been treating Lyme and co. ever since, and we went through a long mold protocol. I also take 1,000 mg. a day of Longvida curcumin to help with inflammation. FWIW, my daughter's C4a was in the normal range.

Well, yes, you do have Lyme. I understand the shock and disbelief. But from personal experience, I look at it like this: I've got 1/2 my life left. I have young children. With treatment, my quality of life will improve, I will be around for them, present, able to watch them grow and become adults without being a burden, and I will have the energy to do all the fun activities that most families do, I am no longer in secret fear of being dx'd with Alzheimer's, hopefully soon I will no longer have raging, pounding headaches, or constant neck pain. For the first time in over a decade, I am able to sleep through an entire night- 7 1/2 - 8 hours, in a row, without ever waking up- I've had this for months now, still find it shocking. The first Lyme book I read was 'Cure Unknown' by Pamela Weintraub Eplained a lot for me. God bless, you can and will get better, and there have been members here who have posted: 'Best thing I ever did for myself, hands down, was treat for Lyme'

Oh no. Crud, I'm so sorry :-(. I know how hard you have worked. You did really get your score down, tho.... PV'S ---

Oh, and I've been 100% gluten free for about 3 months now- tested for high intolerence to gluten, and do feel like my digestion is better now- I'm low sugar- But please, if I have to give up dairy 100%, OMG, kill me now, lol. I don't have a lot of it, no yogurts or milk drinking, but....

Thank you very much- I did call my LLMD, who takes quick phone calls in the morning between 8-9- for free, and, their office service is pretty good, compared to other LLMD offices. Gave him the run down, trying to explain look I'm not a drug addict, but can I please get a pill or two of something called in to try and kick this out? He said he would call me back, haven't heard anything yet, maybe he called something in- I think I told him when I took one of DH's Norco pills (which I hated how it made me feel, but dulled it for awhile, then came back), I might have stumped him. I tell you what- I feel like that Tindamax broke open some old, horrible clusters of gunk- powerful--also feel like I'm in a viral flair of some sort, which I plan on getting into/testing at my next appt. in 2 weeks- Took some Lysine and Lauriciden I had here last few days- but ugh, pretty much feel like junk. I don't feel like taking anything today, next Bicillin tomorrow morning. Thanks for listening and helping, I will try the ice packs on my neck-- xxoo

Hi- I started Tindamax this last month-( and Bicillin shots, but I know this is from Tindy- on no other 'killers') 1st time on was 3 days on/4 days off. 2nd time 'on' I pushed myself because of the full moon- I went 9 days in a row on, because of the full moon, stopped Sunday. I have a constant, horrible head pain for the last 5 days or so- thought it would leave after going off Tindamax, here it is Monday a.m., and I'm in trouble. Stabbing behind left eye, pain all over head when I stand- it has been like this ongoing. I have been doing the Lyme detox stuff, lots of Advil, tried some Norco (pain pill DH had) Nothing, can't shake it. My regular Dr. is a joke, so to speak, and my LLMD is very busy- Any advice? Go to walk in clinic and ask for something? What? Thank you, desperate in CA, S & S

Don't forget this weekend is 'the super full moon' (Saturday) and Tindamax definitely hits parasites. (Full moon being the time when the parasites stir/reproduce.)

Sorry, ETA: It is actually spelled Boluoke, and the maker is Canada RNA. It is on Researched Nutritionals website with the studies, I believe you can order it from Amazon, or Forrest Health website - call for the code if purchasing from there.

What does your Dr. think? Vancomycin can also hit Lyme bacteria (per Dr. B's guidelines) Another Dr. told me a 3 week course of the Vancomycin was the best (in his opinion) to eradicate it, but then you must be vigilant with your probiotics.

I had been using the Boluke by Researched Nutritionals (Dr. B's line of supps) On the website, there are published studies on Boluke, which is why I picked this brand, despite the extra cost. Believed to help the antibiotics penetrate deeper. I was on 1 cap, 2x a day, for some months, and am now off because I am on a doozy of a new protocol.

I just wanted to add: I was on Doxy (about 4 months or so last year) and my very adult back molars, at the gum line, got black staining. My dentist was able to 'blast off' all the staining. I was put on it again this year by new LLMD for 7 or so weeks, and have some slight black staining again at the same place- going soon to get it blasted (cleaned) off again. Be careful on Doxy during spring/summer/ sunshine, it can produce a wicked sunburn if you don't take care. Be hyper aware of that- I burnt my nose, and looked like Bozo the clown for a long month (and then it peeled for two weeks) yes, I was quite the goddess.

Well, this whole thread got me into an emotionally charged (and I'm on Tindamax, ack!) with MY 14 year old son. Who does not have Lyme disease, and has been nonchalant to my Lyme disease- He and my X-husband take fishing trips, stay in cabins, and I was told yesterday they are going again this weekend. I phoned my XH, who is actually pretty cool, and he is aware, but my son started rolling his eyes, got arrogant with me- didn't go over well with me, shall we say. But with him, albeit he has limited exposure, as he is my math/science straight A no sports kid, I do have to trust him- I can't tell he and XH not to take this trip. But he sure got educated last night :-/. I went through the whole 'I may look okay on the outside, but I'm not'. What to look for, what to do, what can happen. There were some tears on my part. I made him sit, look at me, and listen. I put this detailed conversation off too long, I guess because I didn't want to worry him. But he needs to know, be aware, for himself, for others. We don't have visible ticks here in our neighborhood, in the house. But yeah, the 14 year old boys are hard, I can control the young girls easier- and they are more intimate with living with it, sadly. .

You know, it is a hard question to answer- unless you lived with chronic or gestational Lyme disease. No, my dd's will also not be going (when the time comes) to their 3-4 days in the woods school trip in 5th grade (4th grade? Can't remember) My older son went years ago, pre-Lyme dx's- and frankly, I wasn't thrilled with the chaperone stories, either. But I am forever changed. We don't own any pets, and I will never, ever own a cat or dog for the rest of my life- feral cats got me into part of this mess 15 years ago, I believe. My Father, whom I adore, is an avid hiker- throughout his life, and I joined him on many majestic hikes during my life (and never to either of our knowledge together pulled off any ticks.) No more. I will not walk in the woods or up in the mountains again. When he visits this summer, or I see him in Colorado, I will only walk on paved streets, I don't even trust sidewalks very much. As for my girls, until they are 18, I will be as protective as I can. We've never been a camping family, anyway. But I am scared. When they are older, I think they will understand why I was/am this way. Over-reacting? I don't feel like I am. Lyme disease and co-infections has been the biggest hit in our lives together. Honestly, my biggest fear is I won't be able to pull my dd, and possibly myself, out of these infections.

I'm sorry fightingmom, I know it's been tough going, and overwhelming- Honestly, I don't know in depth about Babesia - but what you are describing rings true. Are you with an LLMD yet? Best wishes, and good thoughts your way--- S.

If you search this board, at one time I posted a link about the CD57- thought it was a pretty good article- Basically, < 65 indicates chronic Lyme- Someone recently on here mentioned if it is in the 20's, could indicate Babesia. FWIW, I had a positive Lyme and Bartonella tests, CD57 pulled at the same time, was 45.

This is the Beyond Balance Formulas, yes? And you can do a salvia test? I have personally used their Bartonella formula, thought it was really good. I did call to get a kit for the saliva test for my dd (send it to you free, but send it back with a healthy check.) I decided not to do it for her- but we are on detour of a sort. 'The Better Health Guy' (google) worked with Susan M., did the saliva testing and used her Beyond Balance Formulas. You can read more about it there--