pixiesmommy

Finally got myself in with our new LLMD and he started me on Doxy 100mg- 1 in the morning, 2 in the evening. Also on: colostrum milk thistle drinking dandelion tea glutathione activated charcoal calcium Complex Detox powder (for mold) probiotics and will start Cat's Claw next week. He ran about 10 vials of blood- co-infections, Lupus, thyroid, Rocky Mtn Spotted Fever, IGG, etc etc etc I'm allergic to almost every abx, so I made it through day 1 of the Doxy without a rxn, and I am soooo happy!! He said he would add in Azith for me, maybe next month.

*BUMP!* How are you? Any herxing yet?

I have a 3 yr old dd not yet officially dx, but has lots of markers, so I am almost positive she has congenital Lyme. I was also on steroids while pregnant w/her, and she has issues w/strep but not officially dx w/PANDAS (mainly b/c we have not followed up w/Dr K, but our GP will rx her abx instead.)

We were advised by LLMD to put a capful of ammonia in bath water.

Wanted to add one more possibility that just occurred to me- when I was on abx for chronic sinus infections in high school, I got mono and as soon as I tested positive for mono, I got a full-body raised rash. I was told it was the combo of abx and mono that did it.

From what I understand, some people don't have symptoms but can still have the spirochetes in their systems. Some who have been debilitated can feel better and never relapse, but still show the spirochetes on autopsy, and others show only damage done from the spirochetes, so it is impossible to know if they are just that good at hiding or truly not there- very controversial. With a mouse model, they did isolate antibodies once and inject healthy mice with the antibodies and then later Lyme. The mice who had been "vaccinated" did not show any degeneration to the Lyme, but did show spirochetes on autopsy. The Lyme vaccine that was given to humans (LYMErix) was an isolated part that fit with the arthritic part of Lyme, but you would still have been able to contract it, and in fact, they lit up Western Blots and ended up with pretty severe symptoms and it was pulled from the market. They aren't sure what triggers symptoms exactly- if it is an eventual breaking down of your immune system by the parasites, or if it is a jolt to your system, etc. and some people get sick immediately, while others take years and slowly degenerate.

Could it be candida? I get a sandpapery rash if I don't take enough probiotics w/abx, but my true allergic rxns to abx are hives, vomiting bright lime green or yellow, diarrhea, and anaphylaxia. If it's not hives, I would push ahead and assume candida or a herx. Do you have an epi-pen just to be safe? If not, get one! BTW- you don't happen to have an appt this Fri w/Dr Jeff do you? That's when we see him again.

Sorry, I don't really have much advice other than taking in your own safe toothpaste- Weleda and MI paste are the best ones that I have found that aren't toxic. I don't let them do fluoride or use anything with dyes for cleaning and tell the dr they have an autoimmune/immune related disease and not to cause them to bleed when doing a cleaning so the BBB stays closed (there is some controversy about the BBB and that it is open until age 13 anyway... so...?) but still- you don't want the chance of open wounds for strep to get in there. I would refuse gas and not even go to the dentist at all if you can possibly avoid it. We do a lot of cavity healing and preventative at my house and I would recommend a biological dentist. There are some issues that do have to be addressed, but I recommend getting a Clifford test before getting fillings- it tells which materials your body is okay with. Here is a link on how we healed my daughter's caries- she had no enamel when her teeth came in and was soon riddled with caries, and she is now 3 and we have changed our diet and dentist and added homeopathics and she is now starting to grow enamel on her teeth!! 2 years after starting this... http://chickiepea.wordpress.com/?s=caries Of course, if you have a child that is uncooperative (to say the least!) some of these things won't work.

http://www.timeforlyme.org/ed-resources.html $10 each and some free information too

I know a lot of people have done their taxes already, but I thought this was relevant and wanted to share. I was surprised about all of the items you can deduct- like travel. We had a few things that I had not thought of, like extra grab rails for the stairs... http://www.irs.gov/publications/p502/ar02.html

No one has ever been proven cured. Even those who are "recovered" without any symptoms still show spirochetes in tissue after death.

Those are just the thing! Maybe I would let her shred them or something when she's healed.

I don't know, but along those lines, my 3 yr old (not yet tested for Lyme) has had a spot about the size of a pencil eraser under her eye that you can see only when she cries. We initially thought it was something blocking her sinus, but dr says it is not that. She has had it since birth. Pixie has a vague spot that runs through one eyebrow that looks like a perforated line, but I was told it was a birthmark. It does not look like any birthmark I have ever seen, although she WAS born with it.

Pixie's bio father would get the blood freckles when he would drink alcohol, throw up, or cry too. I wonder if that is also Lyme-linked. I have never known anyone else who got those.

We tested via Igenex for Lyme and then through Labcorp for co-infections. Labcorp showed a couple and they are reimbursed by insurance. I would start w/just the Lyme testing. Igenex keeps your blood so they can run more testing when you request without having to pay for another draw. I know because we did this w/me for something (can't remember what at the moment) and all I had to do was wait for their call and authorize that it was ok to charge my cc for the new test.

Oops just seeing this- Yes, LLMD second appt w/new dr for BOTH her and me (my first) on Friday. No real big herxes for her just yet- increased knee pain but she seems in higher spirits. Lethargy/exhaustion about the same- making it to school 3x/week since Christmas. Adrenal stuff comes back Thurs. That is a great thought about the doll/bear- she has her IGI V bear that we got from the drug co that might help. She does have a stuffed bunny that goes w/her to blood tests, etc. so maybe having something specific will help. I know they sell those virus and bacteria stuffed things- wonder if there is a spirochete one out there. That would be too cool. She loves science, btw.

I love spirulina in kombucha or in orange juice. It's also good mixed in with peanut butter balls. I thought it was nasty the first time I tried it and then I started CRAVING it. Same with kombucha for me.

We were just talking about this tonight. I feel damned. I have always encouraged my kids to get out into nature- and DH just started teaching on an environmental team within his high school, so he is in the woods frequently now, vs. NEVER before. We've been eco-friendly and tried to stay non-toxic, thinking that it was the chemicals hurting us. Pouring DEET into our systems doesn't feel like the right answer either. I'm overwhelmed recently with how to both prevent future ticks but not live in a bubble. We have plans to travel south to see my family this summer too- and they have deer GALORE. I'm about *this* close to calling my mom and telling her we can't go in her yard. I feel like a paranoid freak.

I think we are because if you say that PANDAS is linked to Lyme, then it really makes sense. Pixie's first unexplained fever was at just a few days old (9 I think) and then it was cyclical and worsening each time with neuro/behavioral symptoms progressing to the point of our hdIVIG last year. I have a history of strep myself since birth, with neuro symptoms and constant infections only beginning after a tick was on me for multiple days when I was 10. Mine may have been congenital as well, not sure how far back- my mother is dx w/Lupus (which I believe is really Lyme, but she has given up at this pt) and my maternal grandmother suffers a range of maladies ranging from delusions to severe psoriasis and arthritis- un-dx'ed for anything. Tracing Pixie- now that I see the photos of rashes, her bio dad clearly has cat scratch fever. He was given a tentative dx of schizophrenia at one pt (he never followed up on this, of course) and had severe addictions. Anyway, I could go on and on, but long story short, I'm happy to talk with anyone about anything- I'm pretty much an open book. An "angry at the establishment" open book, but nevertheless, an open book.

Is it powder or capsules? Because you can buy gelcaps and make your own capsules, or pay a compounding pharmacy to encapsulate it for you. If it's liquid, I don't have advice. We have a hard time getting liquids in here- even for myself- with the kids it is just impossible.

WOWWWWWWah! Now I want to see him! That sounds amazing. I'm so glad you liked him, and so glad he was willing to help you. YAY!!!!! *happy dance*

Just received email response that LLMD would like to order a blood coagulation test for her. $600 out of pocket. WHEW!

When I buy things online, I go through ebates.com and then drugstore.com or vitacost.com and then I get the cash back. I also search for codes each time for a coupon discount or free shipping. Most times I can save at least $20 like that. I did not know the supplements were tax deductible if recommended! That is great to know. We use PB8, Pearl and Florastor combo here. I was advised to change this up every 3 months or so since you should alternate strains of bacteria.

That flashback was us Pixie had an extremely stiff neck and couldn't hold down even a sip of water. She was pretty well hydrated before/during IVIG, so I think we did everything by the book, but she did have a very strong reaction. She was unable to unbend to walk to the car when she went to the ER. The ER did want to do a spinal tap, but thankfully we and Dr K discouraged them. They gave her a couple of hours of IV fluids and motrin and observed her. Yours sounds like you picked up a bug. We're actually just outside of Chicago and we and everyone around us has been really sick for about a month, so I'm not shocked. Hope you all feel better soon.

Hope you got some rest. Can't wait to hear what your treatment protocol is. <3