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Ahhh, LOVE to hear it everyone! Thanks for asking, LLM- I've passed a year of full on treatment, more to go for an old chronic like me, but, I will say my brain fog is better, just recently got back to exercising daily, which feels wonderful- for months I was just too fatigued, and I have put on some weight since exercising. I go through my 'stuff' on this path, but I also tend to push the envelope with herbs and antibiotics, treatments for myself - but detox well, too. Sleep is still a come and go. xxoo

Through all the die off and treatments, it can get discouraging at times. Wondering if you'd care to share some gains made? Here are some of our recent developments: 1.) Dd7 had to go for a blood draw 3-4 weeks ago, I absolutely dreaded telling her, afraid of the known OCD kicking in around it, (awful) so put it off until 1 day after school, before going to labcorp. I screw up the courage, tell her, and she says: Okay. Okay?! (me) Her: Yeah, okay. (and then just fine and quiet) Get there, I no longer have to sit her on top of me, does it by herself, no fuss, no muss. 2.) She is doing well in 2nd grade, and finally moved up to chapter books last week (no pictures) and reads them every day! 3.) Is ready to take a shower all by herself without me- I am teaching her how now. (I could tell you a blood curdling phase where she refused water on her previously.) 4.) In the last month or two, she now goes to the restroom all by herself. Every single time previously at home, either myself or her father had to accompany her. EVERY time. She now takes care of all her own business in there (cleaning) without either one of us. 5.) Also now dresses herself without me in the a.m. So yes, we are having our 'spells', but here is some very good recent progress.

Instead of Flagyl, I did Tindamax 2 weeks on/ 2 weeks off for some months, but, I worked up to it. First time, 3 days on, 4 days off, etc. You can build up to your week if necessary. It was hard in the beginning, but got easier, and really got 'stuff.' I didn't get yeast issues either- lots of probiotics, and sometimes I take Oil of Oregeno or Diflucan if I feel the yeast coming on (which is bloating and wicked cravings of sugar for me.)

Well, I don't think it's the same thing, if that is what you mean. I have Lyme and do not have PANS. PANS to me is a set of neuro symptoms and behaviors-from infections, but the immune system or infections gone haywire and attacking the brain causing the OCD, tics, verbal onslaughts, inability for the child to control themselves, separation anxiety, lack of maturity for their age. I can tell you after the hel! here this morning, I am once again struck that these children are some of the most difficult to raise. We did not have 'sudden onset' or 'overnight regression' with my daughter. That to me points to gestational, or infected as an infant. We do have a story of dd7 having a nymph tick on her arm between 3-6 months old- (we were in a new construction house with field mice coming in the garage) I thought it was a new mole that popped up, saw it raised, pulled it down hard, had a blood trail. I freaked and threw it, and had NO clue. *sigh* And dealing with the PANS part, trying to modulate the immune system with steroids and 2 high dose IVIG's, did not work, either. It's rough.

ETA: Sorry! I misread mdmom's post.

Did you ever send in your ERMI tests? I had a mold inspector come out- owner of the company, holy cow was it thorough! I thought I was a good housekeeper until this guy went through every nook and cranny. I got the recommendation from the CA Lyme board- we used a company called 'Bay Mold' they work throughout the bay area, and even up where we are- They did find 1 item in the garage, under our water heater, and they had their crew come in and fix/replace the area safely and correctly. I thought it was a very honest and helpful company. Also, they gave us a ton of ideas for future prevention.

IMO, there is an overlap of symptoms with the Lyme, Bart, Babs, and sometimes different authors (Dr.s') lists can vary a bit as well in descriptions of symptoms. I know I do read 'it' travels in the 3's- Lyme, Bart, Babs. Some say on the east coast, you just will be treated for all 3. I am one who is 99% sure I just have the 2, Lyme and Bart. I had clear positive tests for both. I get ice pick headaches behind my left eye. Once in a while, a good sweat at night (but under blankets) but I don't have fevers, etc. Yes, I've had the horrible fatigue, but that can be Lyme, I had low iron from a ongoing female issue, too. Recently, since I came up with a low positive test for protomyxzoa Fl1953, the Fry bug and test, my LLMD put me on Malarone, Artemesia, Beyond Balance Bab-2 tincture. I was very keen to see my reaction, if I got a Babesia herx. I did not, and I paid attention. All I noticed was a 'toxic' feel of these heavy drugs on my system. I ended up going off them, as I didn't want to do malaria type drugs unless necessary, and I feel like the jury is still out on the protomyxzoa and how to treat. Anyway, long story short (too late!) I think a trial/ starting the Babs drugs should give a clear picture if it is there, or not.

And, you can have neuro symptoms and not be aware of it in yourself, or rationalize and call it other things (well, this is going on in my life, etc.) This was the case for me. When I first started to realize I had Lyme and Bartonella (and I had 100% positive tests come back) I had to do some soul searching and get really honest with myself.

Yes, I am taking Bolouke every morning- suppose to also help antibiotics and herbs penetrate deeper. Dd7 is now on the Cowden protocol, and it incorporates Serrapeptase every day- we are only on day 10, but her bowel movements are 100% normal and regulated, perfect- that is big for her.

Thrilled for your Lyme update, that is huge! Strep 5 times already this year tho, yikes. Has anyone mentioned tonsil removal? So glad the homeopathy is working out for you!

I have to agree with Dedee, herxing or die off in my dd7 looks very similar to a flair. Basically, it is lack of control. You could try giving a binder (like charcoal) couple hours after the antibiotics and other supplements, and see if you notice any improvement. For myself, herx or die off feels like the article posted- but in PANS dd, lack of control- whether it be her mind (OCD), vocal disturbances, or aggression towards another at home.

I haven't used it on a young child, but I have done 2 separate long rounds of Doxy, and got dark brown staining up on my back molars both times- each time I went to my dentist, he was able to 'blast' it off. Stains gone. Hope that helps--- I'm sorry.

While we went through the Shoemaker deal with our 1st LLMD, my VEGF was pulled and came back normal. At that point, I had done some Bartonella treatment (had positive high Bartonella test last year) Anyway, focused on Lyme, cysts and parasites for months, then felt like Bartonella was surging back. I am now on rifampin (2 weeks now) and am having good days- even started exercising again! So, my opinion is no, I don't think it is reliable.

Dedee, I can very much relate. To all of it. If you think it will help, try it. Hang in there------ S

Us too, and way way back we had the standard parasite test done the hospital ordered; negative of course. Then working with Dr. Jerry Kartzinel (CA) he had a complete GI work up done via Metametix (450$)and he came back positive for 'unknown parasites' so he was treated with Alinia but still tested pos again on that same test - which couldn't tell what exactly it was...so Dr.Jerry found The Parasitolgy Center in Scottsdale, AZ and all they do is Parasite testing, etc. they said they would totally be able to tell us what it was, but he has to be off antibiotics for 10days!! I have no idea when that will happen, and our PA NDAS Dr doesn't think that's what is causing the itch, it was such an overnight sudden onset and he was pos for Strep....So we are just doing nothing about the supposed parasites right now, which also really bothers us. *Is Dr. Jerry your treating PANDAS Dr.? He was my daughters before we found Lyme. Also had the metametrix stool test done with positive 'parasite unknown' and we got a script for Flagyl, but never retested. It can take a long time to treat parasites, rotating different parasite killers, IMO.

There are different protocols, and I try to stay open minded. What works for one, might not work for another. Like my daughter and I. Our first LLMD, we did a lot of alternative type things, and pulsing. I ended up switching Dr.s, as I was looking for more of a Burrascano type Lyme and co-infection treatment plan for myself. That type of treatment is not working out for my daughter- and, a lot of our children's circumstances can be varied- mine does excellent at school, has no body pains, but we have other very trying issues. We've peeled the onion with her for years. About to try the Cowden protocol for her- despite if others may nay say it, it is where we are at- I wish you the best with Zhang, and would love to hear treatment updates- Hang in there--

*Hang in there- you've worked hard! I only mention this because you say you may suspect Lyme and are finally getting a test- but leg pain like you mentioned are something I have w/ Lyme/Bartonella.

Our 1st LLMD recommended liquid lipo glutathione for dd- we did it for some months- 1 tsp. mixed in a little juice, given by oral syringe squirted in mouth. It does taste awful, but could get it down this way (followed by sip of juice box chaser)

I avoid it because my dd has ALWAYS had a negative reaction to it- not a die off reaction, I know what that looks like. She does well on other probiotics that help keep her gut in check. I have also read the sacc. B can be overdone- On the other hand, if the gut is prone to clostrida, sacc. B can be a huge help. FWIW, dd has never had clostrida show up on any OAT or stool tests we've run, but yeast overgrowth always- perhaps that's the connection- don't know for sure, but sacc. B is a no go here.

I think it is very important to help the liver while on these drugs. Milk thistle (an herb) is actually used in some European hospitals to detox the liver. You can find it many places. You may also see supplements listed as 'liver support', which might have ingredients to help boost production of glutathione, which is the body's main detoxifying agent. If liver enzymes test out high, usually the Dr. will pull you off all medications and retest later to make sure they are back in normal range before resuming treatment - so, it's pretty important. I tend to give milk thistle away from antibiotics- I give it with the probiotics- at least 2-3 hours away from antibiotics.

Wondering if there is any current experiences with this? (BLT)

I would not skip the probiotics- if you give an anti-fungal, you are still wiping out good flora. My dd does well with Custom Probiotics- I use the CP-1 Adult formula, since it is a pill. Also like Theralac, Kirkman (not Kirkland Costco brand) Lacto. Duo- I take VSL as I do not mind/react to strep strain- avoid that for dd, also avoid sacc. B for her.

P.S. original poster: If it were me, I'd treat the bite with Doxy, if too young Amoxicillin, short Tindamax if I could get it. 30-45 days on an antibiotic is a walk in the park compared to chronic Lyme and co. Did you send the ticks in?

As a Mom who has been in pediatric offices consistantly for the last 14 1/2 years, quite a few different practices, things have really changed about prescribing antibiotics. When my son was an infant/toddler in daycares catching everything, he got antibiotics easily. But in the last 10 years, the Dr.s absolutely do NOT want to give them out- signs on the walls indicating viruses will not get them, your kid can be leaking green hacking cough and a 4 day temp @ 102, and they tell you to wait and see. Come back. Wait and see. Before Lyme dx a year ago, I never went to the Dr.- never-- couldn't remember a time on antibiotics. Finally came down with a long standing sinus infection, fever, horrific, I got refused antibiotics. Could not believe it. I was really upset. It was like I was asking for OxyContin.

Interesting- Neuroscience- coined from Dr. Michael Goldberg, author of The Myth of Autism. He trained Dr. Stewart, some sort of partnership. I have the book and read it, and have been on forums of parents who have taken their spectrum children there for treatment- good and not so good reviews. In very layman's terms, it is all about taking the pressure off the immune system with prescription anti-vitals, anti-fungals, removing all grains, dairy from the diet, any tropical fruit (weird, right) AND adding an SSRI to get better blood to part of the brain- frontal lobe. He orders SPECT scans on the brain of every patient (also treats CFS) and after treatments to see differences- He calls this NIDS- Neuro Immune Dysfunction Syndrome. Does not involve any chelation, and perhaps an antibiotic for a few months is ASO titers are high. There is nothing in the book about MTHFR.