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Everything posted by ShaesMom

  1. Sorry I can't help with the Doctor issue but I wanted to welcome you. My dd also has lyme & co; Pandas, CVID and some other health issues. So I understand what you are going through.
  2. My dd and I both use topical Aspercreme to help with the joint and muscle pain. May not seem like much but it helps with the immediate discomfort and makes life more bearable. It has really helped both us get to sleep at night when we are having a flare. I swear sometimes we are both covered from head to toe.
  3. I just received some lab results from our LLMD for my Non-PANDAS ds. He has been treated for lyme & co since 5/11. He is currently on Aug; Azith, Rifampin, GSE and Diflucan. Results are: ASO 570 DNase 340 Last year his ASO was 1200 and I don't remember DNase off the top of my head. His numbers both times have been higher than our PANDAS dd. He has never exhibited PANDAS like behavior expect for two anxiety issues that remain: 1) he won't turn on the shower for himself and 2) last year he became unable to spend the night at friends' homes because of separation anxiety. Our LLMD mentioned IVIG if his titers were still high. Our dd has monthly IVIG for a SAD/CVID dx. We are not ready to even consider this for our son. I could understand doing IVIG if he was heavily symptomatic but that is just not the case. His lyme treatment is going well and we hope to be able to consider stopping the abx by the end of the year. He is starting to see no symptoms with the GSE. The only remaining symptom I notice is the weekly rashes since starting Rifampin in May. I don't want to stop treatment until the strep is gone. Any suggestions for how to beat the remaining strep would be greatly appreciated. For those "old timers" out there who know us from the PANDAS forum-my dd and I continue to be treated. Shae's is slow going because of her other health issues. I am still fighting an infection from the mastectomy and OMG has Flagyl kicked my butt! And my husband tested Igenex postive in May and started treatment last week.
  4. Myself (bitten by tick & had rash 22 years ago), my husband, and both my children all have lyme. My youngest has been the sickest and I feel that when I was pregnant with her it really jump started my own Lyme. My older child has always complained of heel and ankle pain but didn't start showing any real sx until last year. I think the post by S&S is an extreme illustration what can happen to the kids with congenitial lyme. I know another local family where the Mom and all three kids have lyme and other health issues. They suspect Dad has it as well but he is dragging his heels in getting tested. Mom was also bitten about 20 years ago.
  5. Just wanted to say 'Hi'. Sending hugs and prayers your way!!
  6. I read it three years ago when my dd was in the middle of PANS. It was a really good book. I especially liked that it was from the child's point of view. Of course at the time I couldn't help but see the similarities with PANDAS. If I remember correctly, I think it was at least talked about in the book.
  7. My dd was dx'd with Pandas in 5/09. A month later she was dx'd with Selective Antibody Deficiency (I think we were one of the 1st families on this forum to go down this route). She had high dose IVIG following Dr. K's protocal in 7/09. Three weeks later she started low dose IVIG in an amount that is consistant with treating the Immune Deficiency. She has continued monthly IVIG ever since. We saw some initial improvements after the first HD IVIG and every month following we continuted to see new improvements. She does/can have a hard two days following IVIG but we have found that if they pump the medicince very slowly she does much better. by a hard time I mean a headache, fever, and fatigue. If we can get her to drink a lot of water all of these sx's are minimal and very managable. She continued to do extremely well on the monthly IVIG until 11/10. So much so that we really thought Pandas was a thing of the past. Somehow she picked up a Pseudomonas infection that was hiding in her tonsils and she continued to spiral downward until her tonsils were removed in 7/11. During this time period, her Immunologist bumped her IVIG up but it did not help. This was actually her second Pseudomonas infection (in her bladder the first time) and as with the first time-she had a lot of the same sx's as with the Pandas. Once her tonsils were removed, she started to improve immediately and within a few weeks returned to where she was at prior to the new infection. She has been on monthly IVIG for almost three years. I can tell you in all honesty that as a family we have felt very blessed that she has been able to receive this. It has been a miracle in her life. She actually "looks forward" to her next treatment (as much as a kid can when they are getting poked with a needle!) because she knows how much better she feels afterwards. We can see a definite change in her mood, energy level, and overall outlook immediately following her treatment. She is a different kid! Just today she asked when her next IVIG was scheduled and I assume that her fatigue and leg pain must be returning. I do have to tell you that her ASO titers have never fallen below 500 during the last three years. Also, last year my dd, myself and my son were all dx'd with Lyme disease and Co. My dd has not missed any school this year due to illness. She does have some Pandas like mood issues (very minor) about every 21 days but we attribute that to herxing from the lyme meds. I'm hopeful that once we start treating the biofilms we will see her ASO titers finally come down to within a normal range.
  8. All three of us were negative for Bart through IGenex. Clinical sx for both kids indicate they have it and my response to the Rifampin/Mino/Azith combo definitely indicates that I have it as well.
  9. Hey Dawn! I didn't realize you were treating other family members too. How is your son? Your dd's rash sounds similar to mine-even your description. The lack of itching is what has also kept me from the Doc's office. I see the ID doc on Thursday so I'll ask him what he thinks.
  10. I feel like I'm slowly starting to get back to some sort of normal except with the warmer weather I'm realizing I will no longer be able to "hide" my new lack of a figure behind sweatshirts. The med combo was really killing me but the infection is slowly improving and I guess the bonus is that we have really been hitting Bartonella at the same time. I feel like I'm slowly seeing an improvement in those sx as well. I still get a whole lot of nothing done though! Thanks for asking.
  11. Since starting Rifampin & Mino in the last three months I've had four different types of rashes. I've noticed that one of the rashes is spreading and looks a lot like ringworm...dime size and crusty circular outside but not itching. It is actually in a hard spot to see so I really have to manuveur around with two mirrors to see it. The one spot now looks like it is actually four spots. Has anyone else had ringworm (or a ringworm like rash) come out when treating the LD & co? I picked up some Lotrimin today so we'll see if that helps.
  12. I've been on it several months and haven't had any issues with it but that may not be the norm....
  13. I'm a PANS/Lyme Mom (dd is also a monthly IVIG patient) and a Lyme patient myself. Sounds like your son is probably experiencing herxing from the doxy and possibly the IVIG.
  14. Kathy, Have you seen a decrease in your son's ASO titers since doing the grapefruit seed extract? My dd's titers have remained in the 500's and it is so frustrating to not see that number go down even more.
  15. Thanks for the link. Easy to understand-which is what I need! You'll have to tell me more when I kick all these other infections.
  16. Nancy-like the foot bath idea Thanks! So it looks like the milk thistle is okay-how much should I take? If I take the Rifampin at 8 am/pm then milk thistle with lunch should be okay right? I can just pick this up at Walgreens-I don't need some special brand or anything do I? My pee is already orange and I'm having some of the herxing sx after just one pill! I think I will be sleeping most of the day. I haven't herxed yet on any of the other meds so this will be a new experience for me. My kids haven't herxed much either.
  17. Thanks Ladies. Unfortunately, I can't take baths right now because the stitches are not completely healed. So aside from the lemon water I'm not really sure what else to detox with. Should I be taking Milk Thistle right now too? I'm not really sure what I should do if I start herxing. My body has been through He-- in the last two months and nowhere near healed.
  18. The Staph infection is back in what use to be my breast. Two weeks of Doxy didn't work so now I'm starting Rifampin-300mg X 2 a day. This is double what my LLMD wanted me to start on back before this whole breast cancer surgery for the Lyme. So-what can I expect from this drug? What doses are you taking for your Lyme?
  19. Thanks everyone. I wish I could say I woke up this morning feeling great and that the cloud had lifted but instead I feel like it is another day of not feeling whole. thanks for the verse Dawn. I think I will find myself referring to it often. "Crisis is an opportunity for us to act in new and innovative ways" I will meditate on this well and try to be innovative....
  20. I've been MIA again for the last several months. This has all been way too much for me to handle and I shut down and sunk into depression. Back in February, PANDAS dd had the Gtube placed and went no foods. Three weeks later I found out that I had precancerous cells in both of my breasts. Then during the next two months, we found out that myself, dd & ds all had Lyme & Co. We spent the summer getting everyone started on Lyme tx. On September 14th, I had a bilaterial mastectomy with immediate reconstruction. I have had a total of 5 surgeries since 9/14, three of them emergency surgeries. Two weeks ago I developed an infection that came back as Coag Negative Staph in my right breast. A few days ago, I had my 5th surgery to completely remove both implants. I'm really struggling and I am really concerned about this staph infection and the Lyme. LLMD tried to get a PICC line put in during my last surgery but because he is not licensed in my State-the hospital & my local Docs would not do it. I have spent the last two months with fresh stitches, drains, sleeping in the recliner and nonstop Percocet (and constipation). I want my life back. My son is no better or worse since starting his tx. It is that time of year where Shae appears to have picked up something but hasn't completely spiraled out of control yet. This is a wonderful group of people and I just really need some words of encouragement.
  21. My dd's diet consists of an elemental formula (think infant formula but without ANY food proteins) given through a feeding tube in her stomach. She currently is allowed to eat potato and is trailing brown rice. All other foods are not allowed. SAMe-I looked this up once before and it contained something that she had an IgE allergy to. She is currently on Omnicef (lyme) and Clindamycin (G tube infection). She has been on various others during the last two years. This is the first time anyone has ever checked her liver function! Saw on LLMD on Thursday and he is retesting liver function. Did say he would call GI if necessary. I received an email from GI's office on Friday that confirmed he did not want her on Milk Thistle or probiotics. I guess he doesn't care about yeast infection either. I'm thinking of starting acidophilus from Kirkmans regardless. Problem is if it screws up her next Endoscope in November he will assume it is because of the brown rice and she will lose the food. Okay-just double checked all of her environmental allergies and she was positive for ragweed so she may not be able to take milk thistle anyway. I believe these are in the same family???
  22. Blood results show dd's liver enzymes are elevated and LLMD recommends milk thistle. Her GI Doc for the elemental diet will not let me give her any supplements including milk thistle. Anyone know of any other tx's for this?
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