ShaesMom

My dd has had chronic UTI's in the past. Was the ER going to send his urine off for culture? If not, I think I would take him to his Ped and have another sample drawn for culture. What abx is he on? DD was always put on Bactrim or (not going to spell this right) Furidantrim with the UTI's. Septra was another

Eileen have you visited the Primary Immune Deficiency's website or the Jeffrey Model site? Lots of good info at both. www.primaryimmune.org Click on the publications link & then the Patient & Family Handbook link. Chapters 1, 2 & 4 are a good place to start. http://jmfworld.com/ Low IgG means that her body is not making enough immunoglobulins to fight off infections. Low IgA's is not as significant as the low IgG's. A good Immunologist will look at the number & type of infections along with the numbers to decide if the patient should receive IVIG. Some patients with borderline IgG numbers have multiple serious infections and greatly improve with tx. Some patients have very low IgG's but no history of recurrent serious infections only require frequent monitoring. Did they test her 4 IgG subclasses? Sometimes you can have a normal overall IgG total but be extremely low in one of the four subclasses. Being extremely low in one of the subclasses is often enough for a PIDD dx & tx. People with Immune Deficiency also tend to be more prone to autoimmune illnesses and abx resistant infections.

Hi Elizabeth, Still too new at this myself to give you much advice. My dd and I are both positive. I also strongly suspect hers is congential. I have a son two years older than her. He doesn't have many outward symptoms like her or I but some subtle ones that no one else would probably notice if they hadn't been down this road. Similar to your situation I believe. I haven't had my son or dh tested yet but would like to do so in the future. My concern is, and someone who is more knowledgable may correct me on this, but I think the jury is still out on whether or not LD can be spread via salvia and other bodily functions (other than breast milk & during pregnancy). I would hate to spend the time & money on healing myself & my dd only to have us recontract the disease from either my dh or ds. YKWIM! Plus my ds may only have subtle, questionable sx right now but what if he wakes up tomorrow & can't walk. I've read stories of kids who go downhill really fast. I would rather be proactive (just my personality) than sit around waiting for the ball to drop. Good luck with whatever you decide.

We had to pull Shae out in January. She has a 504 & IEP. The public school has to provide her with a tutor but paperwork didn't allow him to start until March. He is only required to be here for an hour but would actually leave after about 45 minutes because he had so many students. We will try two weeks of summer school for two hours a day in July at her school. Hopefully this will be enough of a transition that we can get her back next year. If not-homeschooling will be my preferred option for next year.

Hey Susan - Glad to hear you are feeling better today! I think you have a tendancy to overschedule yourself and you need to give yourself a break! Get the paperplates & plastic forks out for dinner. Let the laundry pile up and the dust collect. Drink a glass of wine tonight!! LOL Okay, I know that is only temporary relief & actually has the opposite effect the next day but what the hay...... Can the girls carpool with someone else one day a week to swim practice so you can have a few extra minutes to yourself??

I feel for ya! The majority of my pain settles in my hips and lower back. Sometimes I have a really difficult time getting up & walking. I take a muscle relaxer at bedtime which helps with the pain & helps me sleep. I also use a lot of Aspercreme & take a nightly bath. Is the pain shooting down the back of your legs? This would be sciatic nerve pain. If it is located more on the outside of your hips it would likely be bursitis in the hip joints. All of my inflammation seems to settle in the trigger points that are associated with Fibromyalgia. It sounds like your pain is very similar. Massage is really helpful if you can tolerate it. Another thing you can do is press on the sore spot where it hurts the most (it's not pleasant) for as long as you can stand it and try to "release" the tension. Drinking a lot of water helps too but I know you already know this. Have you done any research on myofascial pain? You can have a professional massage therapist work on it for you but I used to leave with bruises. I always felt better though after a couple of treatments.

I used IgeneX for WB and Labcorp for CD57, HHV6, Babesia, Bartonella & MycoP. My insurance company paid for all the tests I had done through LabCorp. I haven't decided yet if I want to submit the WB tests to Insurance. I'm afraid it will raise a red flag.

Twenty years after my bulls eye rash I had a couple of +'s and three IND including bands 31 & 39. I should add 41 was +++

I read that somewhere else just yesterday! LOL

During the next three weeks dd has appts with a Neurologist, her GI, ENT, & her Ped. With all the drama and political atmosphere surrounding LD I'm wondering if I even want to mention Lyme to any of these Docs. I don't want any red flags to pop up for insurance but on the other hand it seems negligent on my part to not mention it. I feel like I need to be very careful...... What do you do????

We see Pixiesmommy's LLMD on June 21st. I just finished reading "Cure Unknown" and the author had at least three statements referring to her choking & swallowing difficulties. Two VERY common symptoms in EE. I shared my thoughts of a connection between the two with a local Mom who has EE along with her three children. Turns out she was bitten by a tick in 6th grade and developed a bulls eye rash but the Military Doc she saw told her Mom that there wasn't any Lyme in the Midwest. So she is now pursuing possible Lyme as well. I will be interested to see what happens with their family.

Taken from Burrascano's treatment guidelines 10/08 http://www.lymenet.org/BurrGuide200810.pdf THE CD-57 TEST Our ability to measure CD-57 counts represents a breakthrough in LB diagnosis and treatment. Chronic LB infections are known to suppress the immune system and can decrease the quantity of the CD-57 subset of the natural killer cells. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active that infection is, in LB we can use the degree of decrease of the CD-57 count to indicate how active the Lyme infection is and whether, after treatment ends, a relapse is likely to occur. It can even be used as a simple, inexpensive screening test, because at this point we believe that only Borrelia will depress the CD-57. Thus, a sick patient with a high CD-57 is probably ill with something other than Lyme, such as a coinfection. When this test is run by LabCorp (the currently preferred lab, as published studies were based on their assays), we want our Lyme patients to measure above 60; a normal count is above 200. There generally is some degree of fluctuation of this count over time, and the number does not progressively increase as treatment proceeds. Instead, it remains low until the LB infection is controlled, and then it will jump. If the CD- 57 count is not in the normal range when a course of antibiotics is ended, then a relapse will almost certainly occur

IgeneX results are: IGM 41 + 58 + IGG 41 IND 58 + 83-93 IND Not as strong as mine but still a positive according to LLMD. No way of knowing what effect monthly IVIG had on these results. OR if we are even lucky that it registered anything considering her Immune Deficieny Disease diagnosis. Her CD57 was 19 & HHV6 6.81 SO....it looks like we are both jumping on this Lyme rollercoaster with the rest of you. Thanks again Suzan!!!!!!!!!!!!!

My dd's ASO titers have hovered in the 500's for two years (down from 1200 at dx) & Dnase is still above 200. The LLMD we spoke with a few weeks ago recommended meeting with an ENT and pursuing removing her tonsils. He told us he has started exploring the strep connection with Lyme and has been surprised that 300 and some of the over 400 patients he has tested have come back with high ASO & Dnase. Five of the children he has treated have had tonsils removed with 4 having complete recovery & 1 at 70% (also being treated for Lyme). We are meeting with an ENT June 2nd to explore this option. Not sure how I feel about it yet. My dd has been through enough surgeries in the last two years & I really don't want to "elect" to do another one. However, I definitely feel that we have not totally eradicated the strep with abx & IVIg.

I know my dd always did better when given a daily dose of Ibuprofen. I've stopped because of allergies to ingredients. Now I give her a daily dose of compounded Tylenol. Since it's not an anti-inflammatory I really didn't expect it to help much but I was wrong. She definitely feels better with the Tylenol. OCD has never been one of my dd's biggest sx so I can't say if NSAIDs will help. Anything is worth a try....

My Rheumy prescribed this for me about six months ago for my "Fibro" and because I told her that OTC NSAIDS were bothering my tummy. I took it once and didn't like the way it made me feel (BIG tummy ache & headache) so I've never been brave enough to try it again.

Us too-My dd is obsessed with Legos. Plays with the people the way most girls play with Barbies or dolls.

The LORD is my shepherd; I shall not want.He makes me to lie down in green pastures;He leads me beside the still waters.He restores my soul;He leads me in the paths of righteousness For His name's sake.Yea, though I walk through the valley of the shadow of death,I will fear no evil;For You are with me; Your rod and Your staff, they comfort me.

You're not alone. We have all been traumatized emotionally and when things start to head in a direction of healing & hope you start to relax. When there is a flare it's only natural that our bodies go back into that "fight or flight" mode and you naturally overreact. This disease affects the entire family not just the sick kiddo. Our entire families will forever be changed because of PANDAS.

thank you for pointing out that the pictures were there. I'm shocked to discover that what I thought was spider veins may actually be a Bartonella rash. AND those hands-they could be pictures of my hands!!! Amazing!!

Definitely old enough to remember this movie! We only had something like three channels back then so we had to watch it every year. Sounds very similar to our experience. Day 1 took 8 hours; day 2 took almost twice as long and we didn't get home until midnight. At one point they stopped the IVIg and gave her fluids only. We definitely questioned our decision that first week but saw such significant improvements after that we decided to continue. It probably also helped that we knew a family whose son(a year younger than Shae) had been receiving IVIG for five years at that time due to a PIDD. Their son had never had any problems. I was just curious-no judgement. I can definitely understand why your family has decided not to do it again.

LLM-I'm curious why IVIg was such a bad experience for your family. Do mind sharing either here or PM me? Just to add another perspective for those who are considering it-My dd8 has been receiving IVIg every 4 weeks since 7/09. She started with the high dose recommended by Dr. K over two days and now receives a lower dose for the PIDD she was dx'd with. I understand her experience may be different than others because she has received the PIDD diagnosis but it was based on failed Pneumo Titers which a lot of PANDAS kiddos have. For us-it has been nothing short of a miracle. Just last night she asked me if IVIg was coming up soon because her legs were hurting again (she crawled to bed) and she was feeling more fatigued. She actually looks forward to the treatment because she knows she will feel better afterwards. We do see a definite decline in the week prior to the next treatment and a major change in her mood, energy level, and behavior immediately following. With that said-she does experience side effects every month which start 36-48 hours afterwards. It usually lasts through Sunday and when she wakes up on Monday morning she is fine (IVIg is always given on Friday). But one day of not feeling well has never stopped her from looking forward to feeling better for three weeks. I've often wondered if the monthly headache, low fever and nausea were caused because her body & the healthy Ig's were trying to fight some lingering infection rather than from the medicine itself. Now after learning more about Lyme I wonder if she isn't actually having a herx type reaction. We've messed with dosage, infusion rate, premeds, aftermeds, water intake and brands but we can't seem to completely stop the side effects. But we all agree that the benefits far out weigh the one day of not feeling well. I should also add that she was extremely sick from the large two day dose back in '09.

Thanks Shadowtails-that is what I was looking for. Must have had the wrong Mom. I received some of Shae's other lab results today from IgeneX: (I mean Labcorp!) CD57 - 19 (with a 1% - which is also below normal of 2%) HHV6 - 6.81 (> .99 is positive) Mine was 4. something So she came back more positive on both of these than I did. Still waiting on her IgeneX results-blood was drawn last week. We were both negative for Babesia, Bartonella & MycoP through Labcorp. Shae's ASO & Dnase are both still elevated as well (547 & 207 respectively). These two tests have never been in the normal range since we first started testing back in '09. SFMom-I think I've already experienced a signaficant herx but would like your thoughts. I had some surgery back in March. I felt HORRIBLE afterwards. Slept for three days straight, temperature fluctuations, chills, nausea, severe brain fog feeling of something just being off. Four days after surgery, I was given Levaquin for possible infection. I continued to feel absolutely horrible. Five days later I was given Bactrim still with no improvement. I finally gave up on abx after four days on Bactrim and started to feel better two days after quiting abx. I should not have this bad from the surgery alone. My legs didn't hurt though! I did some checking and found out that I was given Cleocin (IV equivilant of Clindamycin) during the surgery. Every abx I was given is used to treat Lyme or a coinfection. I felt like death for almost two weeks-the entire time I was on abx. Possible herx???

Here are the results for myself-still waiting on Shae's IgM 31 IND 39 IND 41 +++ 83-93 IND IgG 31 IND 41 + 58 + CD57 28 So if I'm reading the report correctly-if IgM 39 would have been + instead of IND along with the +++41 I would be CDC positive. So help me understand what all this means! Thanks Pixiesmommy-you had a post somewhere that had a breakdown of each band. I can't find it-do you remember where it is posted?

Thank you for the update Dawn. I've been praying and thinking about your family daily. I hope this all turns out well and that Evan can get the treatment he needs. Stay strong!