philamom

Just got daughter's new LFT results back. Both still elevated but decreasing. Her AST went from 282 to 145. Her ALT went from 354 to 161.

We used APO-Hepat or Renelix at different times. On their own, with no other detox methods, per doctor. Seems to be handling it. laure- I tried to send you a pm but it declined -- is your box full?

That is high!!! That is more than double what we paid for our dd's first appt (2hr evaluation) with an llmd (bigger name). Our follow-ups are 325 an hour, but typically still receive more time than that. Fortunately, our insurance covers a good chunk of it. I'm sorry - that is very expensive!

Can these tests be done at Quest? Did you rerun the tests? thx

Thank you for sharing this SF Mom. I will check dd's ammonia levels at her next blood draw in a few weeks. When we last checked it in June it was at the high normal level.

That makes sense. But why the normal C4a if your child has mold? I'm wondering if the problem is this new test that is being run through Labcorp instead of through the Jewish Hospital. Maybe it isn't accurate. Is anyone getting positive results on this "new" C4a complement test through Labcorp? (You will know if you had the new one done if your hospital had to order a "kit" from Labcorp before drawing the blood. You will also know by how quickly the test comes back--3 or 4 days.) I emailed Shoemaker's website today and their response was "The C3a and C4a should be done at Quest. LabCorp tests are inaccurate for these labs."

Sorry...survey is at lymedisease.org (formerly CALDA)

Wonk & Hard Science on Lyme | LYMEPOLICYWONK: Speak Up Now! The IDSA Is Revising Its Lyme Guidelines And Patient Viewpoints Matter LYMEPOLICYWONK: Speak Up Now! The IDSA Is Revising Its Lyme Guidelines And Patient Viewpoints Matter 03 October, 2011 Font size: Click Above to Share ArticleThe treatment guidelines of Infectious Diseases Society of America (IDSA) are more than 5 years old. That means they will be taken off the National Guidelines Clearinghouse in January. It also means that the IDSA is now revising those guidelines. According to the Institute of Medicine, guideline developers must consider patient values and preferences to be considered trustworthy. Our last survey found that 80% of patients would not choose to be treated under the IDSA guidelines. So patient trust in IDSA Lyme treatment guidelines a big issue. But when was the last time the IDSA asked you what you valued or what you preferred in the treatment of Lyme disease? The answer is: NEVER. It’s time we do something about that. We are conducting a survey to find out what you think is important about treatment options, choices, risks and benefits. Our last survey drew over 4,000 responses. Let’s do it again and remind the IDSA that patient values are central to treatment guidelines! To participate in this survey, click here. Your responses will be treated with confidence and at all times data will presented in such a way that your identity cannot be connected with specific published data. The survey should take 5-8 minutes. Note that once you start the survey, you will need to fully complete it. (You cannot save it and return to it later.) In 2009 prior to the IDSA hearing, we wanted patient voices to be heard and conducted a survey that drew over 4,000 responses. It ended up being the largest survey of Lyme patients ever conducted in the United States. The results of that survey were published in Health Policy in a study by Johnson, Aylward and Stricker and summarized in another blog post of mine. Health Policy is a highly regarded peer-reviewed journal that explores health policy issues. The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org (formerly CALDA). Contact her at lbjohnson@lymedisease.org. Add to: del.icio.us | Digg | Subscribe To: RSS View: Archive Print: Comments (24 posted): yolanda on 04 October, 2011

Great to hear she is tolerating the doxy. I took it for 2 months and was also able to take it on an empty stomach. Did your daughter's LFT's go back to normal when you stopped the Rifampin?

Was it from the Jewish lab? Quest? thx Just looked it up...Quest Diagnostics, full name of test on lab result is: NJC-C4a, C4a. The normal range is 0-2830. Thank you!!!

Was it from the Jewish lab? Quest? thx

That makes sense. But why the normal C4a if your child has mold? I'm wondering if the problem is this new test that is being run through Labcorp instead of through the Jewish Hospital. Maybe it isn't accurate. Is anyone getting positive results on this "new" C4a complement test through Labcorp? (You will know if you had the new one done if your hospital had to order a "kit" from Labcorp before drawing the blood. You will also know by how quickly the test comes back--3 or 4 days.) Well, when I had it done in June it was suppose to be through the Jewish lab. Lab Corp messed up. I contacted Shoemaker's website and they replied it needed to be done with the Jewish Lab. But, I just looked on his website and notice he is now recommending Quest C3a & C4a RIA (not Futhan). This was updated in August.

I also recall reading somewhere on his website (I think) that C3a is elevated in acute lyme disease but lowers into the normal range when lyme becomes chronic.

Well, I definitely feel we are dealing with Lyme. We have numerous positive WB, Bart, RMSf results. Whether we are dealing with Lyme & Mold - I'm still trying to figure that one out. We had a few other labs done on Shoemaker's Sheet: VIP was low, TGF was very high, and MSH was low (marked critical), so it points to mold. I brought this info to my last LLMD appointment and he didn't think it was significant, except the HLA testing, which was abnormal. I did have some past flooding in my house and still have one leak that needs to be addressed (and maybe another). My dd's c3a & c4a were both normal.

Not saying I agree with this, but here is what Shoemaker said in a recent article about Lyme: "Tip-offs to presence of mold illness and not Lyme will be the absence of elevated C3a at any time." edit- forgot to mention that my daughter's labs were not elevated (c3a 115.2 - c4a 180.4). They also were done through Lab Corp and not the Jewish Lab.

aidan'smom- she's only been off for 10 days. I had her LFT's drawn again on Monday, so waiting for results. I think if they return to her slightly elevated numbers (been like that for 2+ years), then we will slowly add back the antibiotics. If they are still elevated - then I guess I will begin asking for advice on natural ways to treat . I think I remember OLE being thrown out there...but can't recall if it's hard on the liver.

I hate to say this, but keep an eye on the grandparents as well if there is a lot of contact. We've been monitoring my mother's ASO/DNASE and when ever my daughter has had a rise in titers, so has my mother. My mother's titers are always elevated, but when they significantly increase, my daughter usually has a rise (though this is her first time out of range) or a positive streptozyme screen. Right now my mother's dnase is in the high 400's - my daughter's in the high 600's. My mother was just placed on 20 days of Augmentin.

Yeah...she was on treatment dose of antibiotics for PANDAS & Lyme at the time of the draw. Unfortunately, right now she is on no abx due to elevated LFT's. We will check titers again at the end of the month.

Should milk thistle be given on an empty stomach or with food? thx

Thank you Nancy - I didn't know that about the B vitamins (although - it makes sense) and been taking them at night. I also have trouble sleeping.

Karen- you could try Natural Calm by Peter Gillham before bedtime. It's a magnesium supplement (rasberry-lemon powder you mix with h2o). Could you pm me the name of the doctor you are about to see. -thx

My dd had a sudden increase of symptoms earlier this month, right before school started, that I felt was due to strep. Of course, everyone felt it was due to school, but my gut instinct was telling me otherwise. I took her for a throat swab Sept 11th which was negative but she was on a combo of antibiotics, so wasn't expecting a positve culture anyhow. I knew her increase wasn't due to herxing because we hadn't changed abx or added in any supplements. I guess I'll never know for sure.

My daughter's DNASE is 663. How long after a strep infection would this rise take place? Her last DNASE B in June was <50. It was not drawn in August by mistake. Her ASO is normal at 61. In June it was 35. In August it was 48. -thx

She is currently 20...EM rash and initial misdiagnosis, then weak initial treatment, happened when she was 11. The IVIg is most definitely helping with the movement disturbance- its down from multiple SC-like and/or paroxysmal dyskinesia episodes a day to just 1 or 2 a month. Dysautonomia is improved as are the food allergies. Other than that, it is tough to tell what treatment (auto-immune, Lyme, Babesia, Bartonella) is helping what. Fatigue is still a major issue, and seems to be worsening (Her mycoplasma titers, IgM and IgG have been high for the past 6 months.) While anxiety and paranoia are still an issue, that has been cut in half. Executive functioning and auditory processing issues are much improved, but not enough to allow her to resume classes. From my point of view, each little thing that is being done helps in its own way. Her initial Cunningham tests were very high (esp. antilysogangliosides). We were hoping to have them repeated after being on IVIg for a year, but that blood sample is currently in limbo. Thank you for sharing. I'm praying she has continued success! Can you tell me if the genetic testing was covered by insurance. Also, was your daughter checked for the HLA DR4 gene? I read your previous posts and noticed your daughter has Raynauds & pituitary issues. I have severe Raynauds disease (daily medication helps) that started in my late teens. I also had a pituitary tumor and was diagnosed with IBS all around the same time. Now in my 40's, I recently tested positive for Lyme with Igenex. My daughter has Lyme, Bart, RMSF, PANS, and a slew of IGG viruses. Anyway, again - thank you for sharing. Sorry to hijack the thread!

I agree - that is fascinating. Orion- may I ask how old your daughter is and if IVIG is helping the Lyme & Co. -thx