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ShaesMom

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Posts posted by ShaesMom

  1. Hi Jen,

     

    You are not alone in the family denial issue. We deal with it CONSTANTLY. We have lost what we thought were solid friendships since our DD became so ill. People are just to naive or to busy with their own lives to deal with it. We have learned over time who truly cares and who doesn't. We share with those whose we know are being sincere when they ask and give those who we doubt the standard "she's doing great" reply. It can be a very lonely place when you have chronic illnesses in your home. I wish I could tell you that they will eventually "get it" but they probably never will.

     

    Reach out to those of us who have BTDT and never think twice about sending me an email or phone call.

     

    S

  2. this post made me laugh! I have two fiction books that I really want to read -one from the library & one from a friend. Both are sitting untouched on my counter because I feel so quilty just thinking about the time I will spend enjoying myself and escaping from the day to day reality of life. I mean how could I be soooo selfish to even allow myself to think about doing something for myself SHAMEFUL!

  3. Don't know what Dr T's stand is on Lyme but be aware that your Ped will likely look at you like are crazy if you mention chronic long term lyme especially if your son never had a bullseye rash. You're going to have to be the driving force behind this possible dx and seek answers yourself.

     

    Can you get a copy of that Lyme test you had done on yourself?

  4. I'm probably involved in a lot of those discussions from 2009 as my dd was one of the first to be dx'd with low Pneumo titers and receive a dx of a PIDD based on those results. The exact name is Selective Antibody Deficiency.

     

    The significance really depends on your Immunologist. There is a difference of opinions among this group of Doctors as to whether or not this is a true Immune Deficiency that should be treated with Ivig. Our Immunologist believes strongly that it is a PIDD and has been treating my dd with Ivig every 4 weeks for the last two years.

     

    Buster is correct-the standard protocol is to revacinate with Pneumovax and retest the titers a few weeks later. The problem with this test is some people will hold the titers for a few weeks but six to twelve months down the road they may be close to zero again.

     

    A good immunologist will look at all the test results and the patients health history to determine whether or not Ivig is warranted.

     

    You can learn more about it at www.primaryimmune.org Click on the link to the Publications & then Patient & Parent Handbook. chapters 1,2 & I believe 10. 10 may not be correct-look for the chapter title Subclass deficiency (this will address subclass 2 & 3 deficiency)

  5. Skin testing & blood testing is for IgE allergies. Skin testing is only accurate 50% of the time and blood testing is even less accurate.

     

    I've got a dd who has had multiple skin testing done locally, at National Jewish in Denver, and Cincinnati Children's Hosptial. We never get the same result except to mold & milk. Reaction to the expected allergen is what really matters.

  6. When she was on the steroid burst, she had no appetite at all. As soon as we tapered off... she started eating gallons of ice cream and junk. It was kind of OCDish. She is getting pimples all over her face. Have you ever heard of steroids doing this as your tapering? She also started the bactrim. Could it be that doing it?

     

    How old is your dd? Pimples & lots of sugar sound like puberty to me. Or yeast.

  7. Your post doesn't state if you are thinking of one HD Ivig treatment or multiple Ivig's (?)

     

    This is what our experience has been briefly:

     

    My dd was initially dx'd with PANDAS 5/09. Her ASO was 1200 & I don't remember the exact number but I believe her Dnase was in the 400's. July 09 she had HD Ivig & then three weeks later she started ld Ivig for immune deficiency and has continued every four weeks for the last two years. Lyme dx came last month.

     

    We saw an initial symptom improvement after the HD Ivig & continued improvement after each monthly dose. However during the last two years her ASO titers have never gone below 500 & Dnase sits in the 200's. Despite this I would say for the most part she is in remission for the PANDAS (no return of majority of sx or any OCD).

     

    In November of last year she picked some suspected virus & spiraled downhill from there. The only behavior that returned was the raging. I never felt this was PANDAS raging-it was somehow "different". I believe the most recent episodes are actually Lyme raging.

     

    IMO-knowing what I know now-I truly believe that the Ivig has helped with LD & coinfections & PANDAS. I suspect that without Ivig she would be a lot sicker than she is from the LD. But she still has elevated strep titers and therefore there is still strep hiding out somewhere in her body.

     

    So if your question is will IVIG rid her body of the high Dnase & ASO titers-I would have to answer-not necessarily. We actually had an appt with an ENT this morning and she will have a T&A. Hopefully this will eradicate the remaining strep from her body & her titers will return to normal.

     

    If your question is will Ivig help with her overall symptoms - from OUR experience- I would answer "yes" it is very likely. But I understand that hasn't been the experience of every family.

     

    I know our family has viewed Ivig has a mini miracle. I also know my dd8 looks forward to her monthly Ivig treatments because it helps with her fatigue & leg pain. She definitely has more energy & is in a better mood afterwards. However, she also has what we now believe to be herxing 48 hours after each treatment. She lives with a headache, nausea, and low grade fever for about 12-24 hours and then feels great after they pass.

     

    Good luck with whatever you decide!

  8. I'm going to share with you some information I received from our LLMD that he sent with our IgeneX tests results. The name of the document is "IgeneX Western Blot: Better by Design"

    "39kDa is from the inner part of the Borrelia burgdorferi bacteria called the endoplasmic reticulum. It is the reddest flag of the fifteen antibodies on the blot. Other bacteria that are like the Lyme bacteria do not even have the genetics to code for this, much less produce it. The 39 appear to be unique to "Lyme" bacteria. It has even been suggested that a 39 by itself is enough to be a positive test."

     

    41kDa is the flagella or tail of the Bb, and that is how it moves around, by moving the flagella. It is the most common Lyme antibody of all. Even though different bacteria (E. Coli) may have flagella and possibly cause a false positive 41 test results, there is a 90% correlation with a 41 and antibiotics helping.

     

    58kDa is a heat shock protein that helps the Lyme bacteria survive fever. It was shown at the international borreliosis conference held in Germany in 1999 to be a significant borreliosis antibody.

     

    Research on 700 borreliosis patients and Western blots showed that the IND antibody band are just as significant as the +'s. The IND means that the intensity or darkness of the antibody band is light. But they are seeing a little bit of antibody because they do not have any trouble calling many of the antibodies negative or absent.

     

    Again, this is taken directly from information given to me by our LLMD who has been txg Bb for 20 years. Hope it helps!!

     

    Your son would be positive according to his standards.

  9. I called my local PBS station today. Supposedly, they are airing it tomorrow at 7:30 am. BUT it is not listed anywhere on their website schedule nor is it showing up on my cable networks programming schedule either. So even if they are airing it, no one will know it is on!!

  10. I'm not trying to ring alarm bells - just wanted to pass this along for whatever it's worth. My neighbor told me yesterday that her son has nephropathy - an autoimmune disease that effects the kidneys. Blood in the urine is one of the symptoms. Poor kid is on prednisone for 6 months. I'd never heard of it, so I pass it along just so you can rule it out.

     

    http://rarediseases.about.com/cs/iganephropathy/a/042002.htm

    Our neighbor kid has the same thing.

     

    Momcap-glad to hear something showed up on the lab tests you they know how/what to treat. Also glad he is feeling better!

  11. I took Bactrim for about three days last week-took a day off- and then have been on it again for the last two days. Today I was sitting outside and noticed that I was starting to get what looked like a heat rash on my legs. No itching. After taking a shower I noticed it was on my arms too. I'm not covered but it is definitely there. Now about two hours after coming in the rash is much fainter.

     

    I know Bactrim & rashes go hand in hand but I've been on it before and never had a problem. No known sulfa allergy.

     

    So-here's the thing, no rashes from it before, my period just ended, and I've been drinking lemon water the last couple of days to help detox. LLMD did not RX Bactrim-it was left over from a prior infection. Ceftin wasn't doing anything so I decided to finish up the Bactrim because I knew it made the leg, back, & hip pain go away.

     

    Last week, while only on Ceftin, I had a faint bullseye rash appear on my tummy.

     

    I really don't want to stop the Bactrim because I feel human again. In fact, I want to ask the new LLMD for Bactrim. Can someone knock some sense into my thick skull please....

  12. We chose to keep our animals for now as well.

     

    We purchased a new mattress, pillow, & allergen free covers for both for her. We also purchased a new HEPA vacuum cleaner and put a air purifier in her room. She keeps her bedroom door closed now & the animals are not allowed in her room. All of this at least keeps her room freer from the pet hair and dander. She also takes a bath every night before bed to remove both animal germs & outdoor allergens. Dirty laundry is no longer kept in her room.

     

    We also spend the "big bucks" on a filter for our furnace system.

     

    My dd also reacts badly to allergy meds. We have since found out that she is allergic to a lot of the inactive ingredients in the meds.

  13. Sometimes I think my gut is telling me that I need to leave and it seems to come from a peaceful place that offers "relief".

     

    I don't have OCD so I can't offer any advice in that area. But I am struck by the above statement you made and feel like maybe you have answered your own question. Only you can decide what is right for you. Eleven years is a long time but spending the next 50 with someone you are not really happy with because of the fear of leaving isn't really the answer either.

     

    Prayer is the best advice I can give.

     

    On another note, I love your name!! My dd8 is Shae Leigh as well. I do wish I would have chosen the "y" instead of the "e".

  14. Did your Doc do skin testing to determine that your son was allergic? Skin testing is only about 50% accurate. If you purchased the dog last fall and you haven't noticed any outward symptoms of his being allergic - it may have been a false positive.

     

    We had a similar situation with our dd two years ago. Purchased a new puppy as a family reward for the nightmare of living through PANDAS-three months later skin testing showed she was highly allergic to both dogs & cats. We have always had cats & never noticed a reaction. Same with the puppy - no reaction. We stop at the Pet Store often and you would expect sneezing, watery eyes if she was truly allergic but again we have never noticed anything.

     

    Now the neighbor kid, on the otherhand, who is highly allergic to cats can't spend more than an hour in our house without having his face start to swell.

  15. 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

     

    Yes, they cultured the urine and found nothing at all. Not a single bacteria, just the blood and mucus, which I thought was weird. The doctor seemed kinda stumped too. I'm going to have the ped do a repeat in a week. DS's on pen-vk, and now something for yeast. Hopefully that's all it is. He does seem partly better today. He's not screaming at the top of his lungs when he goes to the bathroom anymore, although he did wet his pants and was horribly embarassed.

     

    Did they culture the sample for 48 hours though or just do the quick dip?? Wetting accidents are another sign of a UTI so I would keep it in the back of your mind as a possibilty.

  16. Does this help:

     

    Western Blot Bands description:

     

    9 cross-reactive for Borrellia

    12 specific for Bb

    18 unknown

    20 cross-reactive for Borrellia

    21 unknown

    22 specific for Bb, probably really the 23/25 band

    23-25 outer surface protein C (OspC), specific for Bb

    28 unknown

    30 unknown; probably an outer surface protein; common in European and

    one California strain

    31 outer surface protein A (OspA), specific for Bb

    34 outer surface protein B (OspB); specific for Bb

    35 specific for Bb

    37 specific for Bb

    38 cross-reactive for Bb

    39 is a major protein of Bb flagellin; specific for Bb

    41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia

    45 cross-reactive for all Borellia (sometimes people with Lyme who have

    this band positive also have the co-infection Ehrlichiosis)

    50 cross-reactive for all Borrellia

    55 cross-reactive for all Borrellia

    57 cross-reactive for all Borrellia

    58 unknown but may be a heat-shock Bb protein

    60 cross reactive for all Borrellia

    66 cross-reactive for all Borrelia, common in all bacteria

    83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane

    93 unknown, probably the same protein in band 83, just migrates differently in some patients

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