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Everything posted by ShaesMom

  1. Ditto Eamom. Reading your post and the first thing that came to mind were gluten and dairy issues. Enterolab tests for intolerances via stool sampling and doesn't require a dr signature.
  2. So when you say longer dose, is LLMD giving the total same amount as before only over a five day period or giving the same daily dose for five days instead of two? I have never heard of anyone doing five straight days of IVIG-high dose or normal dose-and we are a monthly IVIG family. I would be concerned my dd would have a terrible reaction. Will it be done in the hospital?
  3. Parasites and the full moon are often a big topic on Lymenet.
  4. Don't know about the G6PD stuff but we are actually looking into Mast Cells for Shae. I'll have to watch this video. Thanks I've ran into a couple of blogs where the Mom's and kids have both lyme (congential) and MCAS. One poor lady is really sick with the MCAS. http://www.ticksandtrust.blogspot.com/ http://www.caringbridge.org/visit/elizabethfadling/journal/1
  5. Our LLMD started us off on Ceftin and then added in Azith.
  6. Yes, I TOTALLY agree! I've had several very lively discussions with my doc about my "carrier" son. Just because he doesn't have puss on his tonsils and a fever, and his strep doesn't clear with a regular course of antibiotics, doesn't mean we should just call him a carrier and give up!! Every single swab he's EVER had is positive, so we don't need to guess where the strep is. Clearly it's in the back of his throat, and likely elsewhere too. He had "migraines" and "allergies" which I believe was strep in his sinuses. They both cleared within 2 months of starting lyme treatment. My PANDAS son had major and continuous improvement when my "carrier" son was on abx along with him. Unfortunately, we were unable to continue abx with carrier DS, due to severe stomach pains. Ever since we took "carrier" DS off abx, PANDAS DS has been struggling. And at about 6 weeks off abx, carrier DS got that peculiar stink back on his breath. Ugh. At least the headaches haven't come back (yet). So frustrating! And my family doc doesn't believe a word I'm saying because it doesn't make sense medically. Okay, done ranting... for now... Have you considered meeting with an ENT and having carrier DS's tonsils removed?
  7. I think this is a really great question and one that may be debated for along time. We are a family of four with Lyme and only one dx'd with PANS. PANS child is by far the sickest if you exclude my cancer dx. She has been dx'd with CVID, PANS, Lyme & Co & Eosinophilic Esogphagitis. Plus she has some yet clearly undefined problem with her right kidney that Dr's monitor yearly. She has had three periods where her sx's/illness was clearly more PANS and treatment of underlying infection (2 Pseudomonas & 1 Strep related) "cured" sx's. Currently, I believe her PANS is in remission. However, like ChristianMoms child, whenever she is ill her sx tend to be PANS like. No matter what is going on in her body, she always has leg pain, headaches, and mood issues that border on raging. BUT the mood issues are short lived, can generally be linked back to a trigger within four hours, and she is usually in more "control"-meaning she is able to say, I can't stop myself, leave me alone so I can calm down. So PANS like but definitely different. DS12 had ASO titers of 1100 and Dnase in the 400's when dx'd with lyme but no PANS sx. He actually had more typical EE sx. A year after starting tx his ASO is still in the 400's I believe but he has never had raging or PANS sx. DH has elevated Dnase but normal ASO titers. I have both normal Dnase & ASO but I recently failed a Pneumo Vax challenage and have low IgG totals, and Subclass 1 & 3; so I am headed towards a dx of CVID myself. So everyone in our family clearly has issues with strep but only one has the severe sx associated with PANS.
  8. Thanks to everyone who responded. Wait is end of November. Never easy to wait.
  9. I have a copy of the blood work. My TSH is 1.74. Glad treatment is working and you are feeling better. Losing weight-always a big bonus! I will look into the Biotin.
  10. It has been falling out for the past two months. It is getting really thin in some areas. The hair on the lower portion of my legs also isn't growing very much at all. My thyroid tests all came back normal. I've visited with my LLMD, ID, & GP. Since the tests came back normal and none of the meds I'm on list this as a side effect-I'm getting the it is stress related answer. Any ideas?
  11. I do think the Metametrix report is easier to read. Genova & Metametrix are actually in the process of merging into one company. http://www.gdx.net/i/metametrix
  12. My LLMD uses Genova Diagnostics. Is this a good choice or is there someone else I should use? Anyone recommend any certain panel? Thanks
  13. DD is not getting better. No major changes except starting school almost two weeks ago. Current LLMD is not being very helpful. If I'm not mistaken I believe the Doctor in Colorado does the muscle testing (ART ?). Can send someone send me a PM with how to contact him and info they would like to share. Thanks
  14. I can't get the link to work. Says the content is not online. I read an earlier post you had about the MMS and found it quite intriquing. Did you test younger DS for the parasites or did you just treat? We are headed to Cincinnati in a couple of weeks for the quarterly GI appt and I am planning on asking a lot of questions about parasites this go around.
  15. Large family history of migraines including in myself. She gets them after IVig. She did mention having a headache/migraine the last two days. So you are saying that the magnesium would be helpful? The other thing we have noticed is that when she is having a tremor her fingers and hand are colder than the other hand.
  16. Thank you for your concern. However, after a life long battle with chronic, and by chronic I mean severe, constipation; MOM is the only laxative we have found that gives her some relief. All of her Doctor's are aware of her daily dose and have actually encouraged us to up the dosage until we find the right amount that will allow her to have a daily bowel movement. I do not really like that she has to rely on this med and prefer that she was able to go on her own. Unfortunately, whenever we back off she gets constipated again. No need for anyone to point me in the direction of Miralax. Been down that road and she was poisoned by the polyethylene glycol-"Miralax toxicity" as it is called. Very scary experience. Not to mention that it has never been tested on nor approved for use in children or for more than a period of two weeks in adults. Lets not forget that while PEG 3350 is not antifreeze itself-they are made from the same compound. If you can't tell-Miralax is my soapbox. I HATE the stuff.
  17. My dd also has CVID dx but her Doctor has never checked her urine for protein. She does she a Urologist for a different reason though. I ditto Hopeny-I would call a Urologist office.
  18. She woke up yesterday with a tremor in her right hand and her left hand felt weak and numb. She was also complaining of heel pain and a tummy ache. Heel pain, tremor and weakness are all new symptoms (her brother and myself do have Bart). I emailed her LLMD and got no response and their office is closed today. The tremor was quite pronounced. I gave her an Epsom Salt bath and it stopped the tremor for a few hours. I took her to school this morning and within an hour she was in the Nurse's office with the tremor back and worse than yesterday. Brought her home and gave her another bath. The tremor was better but still there. So I don't know if this is a herx or a new symptom. On Saturday she had three drops of GSE (down from her normal 5 due to school starting). On Sunday she had a weird episode where she was kicking her feet, rocking, clutching her pants, crying, and repeating "I need help. I can't stop." Took us about 30 minutes to calm her down and for the motions to stop. Emailed LLMD on Monday and all he suggested was drop GSE down to 1 drop for awhile. Now this happened yesterday and today. The only other change we have made is to add the Mag Cream at bedtime. I rub a small amount on her back and her feet. I can see it causing the heel pain since it has been directly applied to her feet but the tremors? Also, she has been taking Milk of Magnesium for the last couple of years without any issues. Epsom salt baths aren't a problem either. So I don't know if I should take her to the ER and insist they do a MRI or ride it out until Monday and see what she is like. Any thoughts, opinions, suggestions would be greatly appreciated.
  19. Sorry to hear about your 3 yr old. I hope you have caught it early and treatment will be easy for her.
  20. Thanks for this info LLM. I need to sit down and spend some quality time researching this still. I haven't forgot you either-but admittedly-I'm stumped!! PM you when I have more time.
  21. My own experience with Septra/Bactrim has been this: I was put on it twice last year for a period of 14 days-this was before I knew about the lyme & co. Both times I was on it I felt absolutely horrible. Both times I stopped taking it early because it made me feel worse than I did when I was not on it. After learning about my lyme, I assumed I must have been herxing. In December of last year I developed an abx resistant infection after surgery. Culture of bacteria came back showing that Bactrim was the drug of choice. So I reluctently took it again figuring it would also target the lyme/bart. A couple of hours after I took it I noticed my lips felt kinda weird. Made a mental note of it and went on with my day. Took the second dose at dinner time without any hesitation. The next morning I woke up and my lips were larger than Angelina Jolie's!! I was having an Anaphylactic reaction and consider myself very lucky that I even woke up that next morning. It wasn't until the third time-months later-that I had the ANA reaction. So IMO-if your Mom instinct is telling you it may not be a herx but an allergic reaction-go with it and find a different med.
  22. My dd is also a little older and has no desire to take a bath any longer. So I'm trying to compensate for the lose of the epsom salt baths. She also battles extreme constipation and takes Milk of Magnesium for that but it isn't enough. So I'm hoping the cream will help with both aspects.
  23. Thanks. I'm going to give it a try tonight after her shower.
  24. I ordered some of this through Kirkman's. Should I expect to see any herxing with this stuff or is it pretty harmless?
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