ShaesMom
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Posts posted by ShaesMom
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Okay so I'll admit I know nothing about MycoPlasma because it hasn't been an issue for dd.
My son, who isn't "sick" "yet", has Myco IGG of 515 and ASO titers of 1012!!! Okay.....
CBC showed high EOS and low Neutrophils. We are familiar with Eosinophils around here. His blood work from last go around had high ECP.
I know I can search Myco and find a ton of info on this site but would someone mind giving me the short, quick version. And what do you think of those titers? We had dd's tonsils removed because her's were hovering in the 500's. He hasn't had strep recently.
My son isn't officially a patient with LLMD yet so he won't rx anything for him.
Thanks
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My dd's CBC has been tested more times than I care to even think about in the last nine years and it has never been abnormal. Waste of blood in my opinion.
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Ours are normal as well.
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I was told by the Lab who did dd's pathology on her tonsils that if you don't specify what you want them to test for they will basically just look at the tissue and may or may not check for cancerous cells.
I would also double check that none of your meds or supplements can cause issues with bleeding or clotting.
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DS 12.5 newlt dx'd w/ GI Lyme ( strong possibility) having stomach pain and general ill feeling on his 3 new abx started all at once: Zith 250 twice daily, omnicef 300mg once daily and Tindamax 125mg twice daily on w/e.
He is only getting the zith once per day as he can not tolerate twice.
He also gets one Theralac twice daily, one S. Boulardii twice daily and 3 Culturelle twice daily.
That's it--any suggesions? Dr. J feels that detox for kids is unnecessary--but I feel my child needs help.
Thank you.
Terry
What exactly do you mean by GI Lyme and does Dr J have a definition as well?
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I have an apt with LLMD next week. My son is currently doing really well on Zithromax. Would it be OK to add in a trial of doxy to the zith and see how he responds?
BTW, he regresses in a major way whenever we take him off the zithromax.
Also, Shae's Mom, who is your immunologist? My son has IgG Subclass deficiency. We never tested for antibody deficiency because Dr.Gupta did not want to immunize to test.
We are in the Midwest.
I don't have enough experience with Lyme to comment on abx.
Great job on getting the LLMD appt next week!
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Well...definitely sounds like my daughter then.
I was able to get our local Doc to order some blood work for us before our appt with the LLMD. She wrote the order for us and then we took it to our local LabCorp for the blood draw. Took about a week for the results and insurance paid for everything. I went ahead and order the WB from IgeneX too.
If you are interested in the Lab Panel #'s send me a PM.
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immune deficiency. overnight onset of severe anxiety-stopped basic hygeine, cognitively he declined, he became like a different person overnight. When we could get him to come out of his room he wanted all windows shut, all doors closed, and all blinds drawn, he said because of light and noise sensitivity. No real tics, no real rituals, compulsions. wide range of physical symptoms-joint pain, sore throats, low fevers on and off, problems with urination, and constipation.
You've just pretty much described my dd9 with the exception of her daily headaches and her GI issues. She receives IVIG every 4 weeks for her immune issues.
Has your son been dx'd with CVID or something else?
We spent years trying to get someone to listen about the constipation, UTI's and fevers. No one did until the PANDAS symptoms kicked in around age 6. No one could ignore us then. Managing the PANDAS and IVIG helped for about 18 months and then she took a major backslide. We found out a few months ago she has congitial Lyme.
Great advice from the other Mom's. Good luck finding answers.
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I just discovered yesterday that a skin tag I have on my arm is actually a wart which is also viral. I believe my viral component is huge part of my issues with Lyme.
How did you discover the skin tag is a wart and viral? I have developed several skin tags in the last few years.
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What great news to see improvements on just the detoxing and supplements. I am sure this gives you hope that you are headed in the right direction. I hope this trend continues.
Just an FYI-My non PANDAS child had a more positive WB from IgeneX than my PANDAS kiddo but both have Lyme.
Would you mind sharing what supplements and detoxing you have started?
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I was given Bactrim before we knew of the lyme a few months ago and I was extremely sick while on it. I'm hoping to convince the LLMD to prescribe it again. At least I know it was working. With the Ceftin and Azith I'm on now I'm able to function with minimal herxing but wonder if it is enough.
Good Luck!
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Doesn't sound like LLMD is going to treat dd for this.
Need all your research resources to share with him. Thanks!
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So this is MARcons then? So is all Coag Negative MARcons or is there only certain strains because I'm having a hard time researching this one?
the culture did not have the MAR part. Her Immunologist didn't want to do anything. I emailed the LLMD.
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Dd had nasal swab that was positive for this.
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DD's nasal swab came back positive with this.
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We are all gluten free at my house. I sent you a PM with some more info.
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Our 14 yo failed all pneumococcal serotypes. The 2 different immunologists we consult with have said this is significant.
But Busters chart clearly shows that levels normally fall after vaccination even in normal kids and its the REVAX that allows the levels to rise.
So we should ignore our Immunologists because of Buster's chart?
We see one of the top 5 Immunologists in the country according to a reputatable professional organization. I'll stick with his opinion and successful treatment history.
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Definition of Common Variable Immune Deficiency
Common Variable Immune Deficiency (CVID) is a disorder characterized by low levels of serum immunoglobulins (antibodies) and an increased susceptibility to infections. The exact cause of the low levels of serum immunoglobulins is usually not known. It is a relatively common form of immunodeficiency, hence, the word “common.” The degree and type of deficiency of serum immunoglobulins, and the clinical course, varies from patient to patient, hence, the word “variable.” In some patients, there is a decrease in both IgG and IgA; in others, all three major types (IgG, IgA and IgM) of immunoglobulins may be decreased.
It says nothing about response to a vaccine?
Also, if you didn't have the PREVNAR vaccine, you're going to fail an immune response to it. right? Sheasmom, did your daughter have the PREVNAR vaccine?
You are confusing CVID with Selective Antibody Deficiency. Yes-my dd had all required vaccinations including Prevnar.
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Haven't spoken with the ENT yet but I received my copy from the Hospital of the culture. Her tonsils came back positive with the following:
1. Pseudomonas Aeruginosa (she had this in her bladder several years ago. Required IV abx)
2. Alpha Hemolytic Streptococcus (Oh yea!)
3. Capnocytophaga Species
4. Prevotella Species
5. Many WBC's (also known as Eosinophils which attack parasites)
6. Moderate gram positive cocci
7. Multiple deep crypts filled with amorphous debris and one tonsil being "inked" (anyone know what that means?)
Put a call into the ENT since we aren't supposed to see him until next week regarding the Pseudomonas. I hope they start her on IV abx since this is the second known infection with this nasty bug. Interestingly enough last time she had this around age 3 was the first time she had raging attacks. This was years before PANDAS.
So I'm thinking we are very fortunate that we decided to go ahead with the surgery.
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After a quick look at both GABA & Ketotifen-both may work. I will have to further research each one. Thanks!
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I know this isn't the answer you were looking for but it might help with overall anxiety. Many individuals with chronic infection have high histamines levels..... Sometimes getting those levels down consistently helps with overall symptoms. We were doing benadryl nightly with the twins and Ketotifen (also a Mast Cell stabilizer) with older DS. It takes about two weeks for the body to adjust. Now we are doing something a little more natural 'D Hist Junior' for the twins. We did nightly benadryl for almost 6 months previously.
-Wendy
We did Benadryl & Advil two years ago and it worked great. Unfortunately we know now that both actually aggrevate her EE symptoms and she can no longer use them.
I looked into having the Benadryl compounded but if I remember correctly the Pharmacy couldn't do it.I checked the D Hist Jr but it has pineapple enzymes so it is out as well.
Whatever I find has to be in liquid form because she has an IgE allergy to pork which translates to gelatin & gel caps-a product found in all pills.
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Dd was supposed to start summer school this morning since she missed half of last year. The anxiety attack started last night before bed, flared again from 2:30am-4:30am and of course again when it was time to get up. She refused to get out of bed which meant I was unable to hook up her Gtube and give her breakfast. Needless to say she never made it to school.
While she has not returned to 100% of where she was before last November there really isn't any reason why she can't go back to school right now or in the fall.
So-I think its time to try some anxiety meds to help. She is starting to hyperventilate with these attacks. The behavioral therapist has given us tips to calm her down but they aren't working.
I think its time to find an anxiety med to help her when she gets this bad. Has anyone had any luck with anything that hasn't caused PANDAS flares?
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dd8 still talks about top ramen and she's been gluten free for 3 years! Her goal is to be able to eat gluten again and her first test is going to be with a cinnamon roll. She can't remember ever eating one. When she walks by one of those places in the mall that sell them, she says "Ahhhhhh, that gluten smells good!" I hope she gets her wish some day and I hope your ds does too!
Susan
I used to make homemade cinnamon rolls every year for Christmas morning. Yum-O. My first mall food would likely be the Auntie Ann's Pretzels!! We may have to make a trip to your house when gluten is back on the menu and we can all celebrate together!!
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My son took the news really well. Looked at me and said "I'm not going to get upset this time because it means I might be able to get gluten back which means I can be a normal kid again." I'm very proud of him.
Gluten was really hard for him.
Need all your research resources to share with him. 
Strep again
in PANS / PANDAS (Lyme included)
Posted
Oh Jen-I thought things were going as well as one could expect since I haven't heard from you. So sorry to hear that is not the case.
I'll keep praying.