Mary wag
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Everything posted by Mary wag
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Us too Nicklemama. When my daughter was in second grade the doctors talked me into the FluMist Got very sick with fever for a few days after. Then all the fears and phobias sadness anger rage all came out. Then that some of the intrusive thoughts started. Think those were the worst for her . That summer we discovered Lyme. She is now in six grade and after 3 years of treatment is doing very well.
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Hi Mama2alex Thanks for the great info. We live in San Diego. See a natural path in pismo beach. Not sure if he can sign the medical exempt form. Maybe I can search for a LL M.D. down here that would work with us on the situation. If you have any names in this area that would be great No IEP. Not sure what it takes to get one. She does great in school. Only her teachers know that she has Lyme. I know I wish we could still do the personal belief. she will be in seventh grade next year that's the next checkpoint. Told my husband we're moving to Hawaii ha ha !!! Thanks mary;)
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My daughter is due to start seventh grade next year. Because of the new vaccine law in California she will not be able to go to public school unless she gets the tdap required for seventh-grade entrance She is healthy and doing well however she does have Lyme. I'm afraid to do the vaccine and mess with her immune system. Not sure if she can have a medical exemption. And not sure if her pediatrician would even consider that a medical reason Anyone has information or suggestion that would be greatly appreciated Thanks mary
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all over body rash at the onset of lyme
Mary wag replied to momto8's topic in PANS / PANDAS (Lyme included)
Hi there My daughter had a rash that covered her torso and legs. Almost looked like Scarlet fever It ended up being Lyme. Diagnosed two years later. We live in California where no one even knows what Lyme is. -
Thank you so much for posting this. I am so happy to read your DS is doing great. I am also proud of you as a parent for sticking by your child through this. I have a daughter with Lyme who is also doing well. It has been a long road for us as well. It is so nice to read what you posted thank you so much
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Question about a consultation with Dr. Trifiletti
Mary wag replied to ssfkat's topic in PANS / PANDAS (Lyme included)
Yes she first tested pos for Bart. Neg for Lyme through lab corp. finally tested through igenex for lyme. She tested positive. Still under mild natural herbal treatment. Doing great. Most symptoms resolved. If your dd has had several tick bites. I would test using igenex. Also glaxay labs for Bart testing great Mary- 22 replies
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- Rosario Trifiletti
- pandas doctor
- (and 3 more)
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Question about a consultation with Dr. Trifiletti
Mary wag replied to ssfkat's topic in PANS / PANDAS (Lyme included)
Yes everyone is right. Keep calling back. Dr T is amazing. He did order a zillion blood test for my daughter. When I brought the list into our pediatrician he thought I was crazy. Especially the Bartonella and lymes. Most of her blood work looked great. Lymes through lab corp was negative. But the bartonella test was positive. All through college I worked for an veterinary hospital. The vet I worked for said I should pursue the Bartonella positive test and it can cause psych symptoms. Then we finally got an igenex test and found Lyme. After that did another phone consult with Dr t. He is so smart. He did tell me it would be a good idea to find a doctor that I understood Lyme disease because it was not his field. In the phone consultation we talked about Bartonella. I told him I had contacted a veterinarian in his area the did research on Bartonella. He was so cool he was open to the idea of Bartonella causing all those symptoms and wanted to contact to the veterinarian to talk to him. If it wasn't for Dr. T we would've never found what was wrong with our daughter and she would never be doing as good as she is today. We did find a llnd natural path to work with.- 22 replies
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- Rosario Trifiletti
- pandas doctor
- (and 3 more)
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Can you tell me you use for detox?
Mary wag replied to trintiybella's topic in PANS / PANDAS (Lyme included)
Hi there It is an infrared Mat made of amethyst crystals. Used for inflammation, relaxation, detox. Anxiety and many other things. If you google Biomat, lots of stuff comes up. We first used it at the Hansa center. It heats up, so nice and relaxing to lay on. Might help with her sleep. -
Can you tell me you use for detox?
Mary wag replied to trintiybella's topic in PANS / PANDAS (Lyme included)
We use beyond balance cal k and cal k detox. If you go to their website they have other detox options. Perkana detox are great. They are a kit with three that you take together. We used these in beginning of treatment. apo-HEPAT (50 ml) ITIRES (50 ml) and RENELIX (50 ml) Also Biomat. They are expensive. But worth it. Infrared sauna Foot bath -
She's taking so much and still no sleep!
Mary wag replied to trintiybella's topic in PANS / PANDAS (Lyme included)
Hi sf mom, Are the earthing bands and pillow like the imrs mat, pemf mat. We have one, but I never used it one her. I use the Biomat and our infrared Sauna. She's doing great! Under the care of dr T in pismo beach. Natural path Mary -
Marcons are antibiotic resistant nasal staph. Are you using nasal spray or mouth spray. I thought it worked great for my dd 11. I was very worried about using silver. But have read that argentyn 23 is very safe. My dd had bartonella and lymes. And her main symptom was intrusive thoughts. With treatment she is so much better. They hardly ever come up anymore. When we finally started to treat the marcons, that's when I saw the big jump in improvement. Also did urine neurotransmitter test. Used gabatrex and now she is on serotrex. This helped too Let me know if you have any more questions:)
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Hi there are you talking about argentyn 23? We used nasal spray to treat marcons. Saw good improvement in mood and happiness. Did not see die off. But started at end of treatment. For detox I do like beyond balance cla k and cla k detox. Also to help detox like in fared sauna and Biomat.
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Has anyone used Pharmasan Labs NeuroScreen Expanded?
Mary wag replied to ktdommer's topic in PANS / PANDAS (Lyme included)
Yes we have done this test a couple times. First time her glutamate was way high. I cut out as much glutamate as possible. Pharm cheese, tomatoes and msg. There's a list online of foods to avoid. Plus we gave gabatrex. It helped a little. Did test again and showed glutamate now within normal range. Others where off now. Can't remember what they where don't test in front of me. But now they recommended serotrex. This helped more than the gabatrex. She only gets 1/2 tablet once a day. -
Pandas docs who will consider infections other than strep
Mary wag replied to Nela's topic in PANS / PANDAS (Lyme included)
Dr T the pediatric neurologist in New Jersey looks at many triggers for pans. I did a few phone consults with him. He is so great. He ordered about 20 blood test for my dd. This is how we found bartonella. Her lymes was negative through labcorp. But later she tested positive for lymes through igenex. Dr.T does not really know how to treat lymes. But gave me some names. I did not use his recommendations. -
Hi there, My dd went to hansa last April. There is a father on another board who's dd it really helped. For my dd it did help, but not a cure all. I feel it was a part of our healing path. I am glad we went. However we are in California and it is a long way and expensive. I felt we still needed local support as well. I met a nice family who has two kids with lymes and the mother while I was there. Hansa has really helped her kids. They have been back a few times for treatment. If you pm me, I can send you link to their blog. We are still implementing what we learned there. Detox !! Biomat. Ionic foot bath. The np we see using some Jernigan products as well as others. He is very lymes literate. He did further testing and we are still treating. Seeing more and more improvement. She has been off antibiotics for a year. Treating with herbals and homeopathic. See a chiropractor as well to keep body aligned. I think just like many treatments hasna helps some, but is not the complete answer for others. One thing we did there that I thought was pretty amazing was the life vessel. Too hard for me to explain, but you can google Please contact me if you want to know more.
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Hi I am thinking about going. Live in San Diego. My dd doctor is speaking on Saturday. Going to Maui Sunday so may just go Saturday Mary
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Has Anyone Tried Cowden Protocol For Lyme?
Mary wag replied to cobygurl's topic in PANS / PANDAS (Lyme included)
Hi there, Sounds like with the homeopathic and supplements your child is doing well. My np does not treat lymes if there are no symptoms. You might just want to keep supporting the body like you have been doing. But do keep an eye out for lymes symptoms. So glad to hear your child is doing well. We are treating with herbs right now for lymes. Has really helped my dd. She has been off antibiotics for 7 months. Herbs, homeopathic and supplements have taken her to a new level of healing. Are you working with llmd or a practitioner knowledgable in lymes. -
Read this article about bad probiotics...
Mary wag replied to Dedee's topic in PANS / PANDAS (Lyme included)
Thank you for posting. Thought very informative. Makes you think:) -
CDC Estimates 300,000 Americans DX Lyme each year
Mary wag replied to Chemar's topic in PANS / PANDAS (Lyme included)
Well said mdmom:). Lymes has changed my family forever. Thought at first we were dealing with pandas. Then got lymes diagnosis. I have learned so much from all the great parents on this board. Thank you. -
I took parasitology in college too:). Loved it. In fact researching lymes in San Diego and found article my favorite professor wrote 1990 about lymes in San Diego. Hmmmm no lymes here right!! We last year, at the beginning of our journey with my dd, went to a women that did live blood analysis. She said dd had toxo. Get rid of all cats:(. Got bloodwork done that says no toxo. Is there another better test to do? Her only symptom left is intrusive thoughts once day about 1 to 2 minutes. Still have my cats. Had them all tested through galaxy labs.. Negative. For bart. Thought about keeping outside only. I have floaters too. Had them long time. Worked for vet 7 years. Maybe I had toxo? Mary
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Doesn't want to see grandparents!
Mary wag replied to T_Anna's topic in PANS / PANDAS (Lyme included)
Hi If you can maybe you should postpone the visit until he is feeling better. When my dd was in the height of her illness, she did not want to see some people, mostly friends. So I did not force it. Are they your DH parents. Maybe he could try to explain to them what is going on. I know this is so hard. But hopefully since they are family they will understand;) Sounds like you are making progress too, so the added stress might not be good right now. Mary;) -
Informational meeting on Bartonella
Mary wag replied to mdmom's topic in PANS / PANDAS (Lyme included)
Yes you do have to be off antibiotics to test. Think two weeks. She has been off them since march 30th. Treating holistic now. We only did the single draw test because I could not get her to get blood drawn three times in a week. Now that she has improved. She might be more willing to do triple draw. They told me at galaxy this is by far best way to test because the bacteria cycles in and out of blood. We did do igenex bartonella at the same time, all negative. She was originally positive with speciality labs back in nov 2012 Mary;) -
Informational meeting on Bartonella
Mary wag replied to mdmom's topic in PANS / PANDAS (Lyme included)
Dr breitschwerdt is the reason we found Bart then lymes. You are so right veteranians are open minded. I used to work for a vet in college. I was talking to her about my dd symptoms. She has gone to a conference and dr breitschwerdt spoke about bartonella. My vet is the one that suggested testing for bartonella not my pediatrician. He has a lab the test animals and humans. Galaxy labs. We tested all our animals and my dd using galaxy. The do a triple draw test for Bart. Unfortunately, that means three days of blood draws. I emailed dr Breitschwerdt with questions and he was awesome and got back to me. So veteranians put me on the right track:) If I lived close, I would go to the meeting There are some great YouTube videos dr Breitschwerdt has done. Mary