philamom

Thanks everyone. I'm beginning to think this may be a culprit to my daughter's severe nausea and constant stomach pain. She is also dealing with a severe fear of vomiting, esp in front of people, which keeps her from leaving the house (except when forced/bribed). I did a stool test for h.pylori back on Dec 1st that was negative. The GI wants to do an endoscopy and colonopscy. I can't see how she would be able to handle the prep for the colonopscy. I'm suprised a blood test wasn't ordered to at least rule this out first?? I'm arranging a home blood draw for the end of next week - I'll have them add it on to her other labs. also- my dd is having some black/tar colored stools (not always)- and smelly when it happens. So, I just read it can happen when taking iron supplements, which we just added in every other day. But I remember these dark stools taking place prior as well.

So, if taking Prevacid, it would probably make the H.Pylori infection worse by reducing stomach acid?? edit- wait, I think I got that backwards.

What's the most reliable way to test for H.Pylori?

bumping - 6001 signatures now.

This is OUTRAGEOUS!!!!!Over what???.......meningitis for an 11 yo? I had Dr B's letter regarding vaccines. Did you have that to show her? The Ped I just fired was only concerned when he could "catch dd12 up" on meningitis vaccine. I mean, really, if the primary role of a Ped is to administer vaccines "on schedule", who needs them and why do they even need to be doctors? There must be some kind of vaccine bonus they receive-MUST be!!!!!! We switched to a family doc who is also a DAN. The whole family switched to him, luckily in network. Jag- I'm glad to hear you like the fam doc - as you know we use him too. He is my angel right now! He sat with me for over an hour last Tuesday evening (if you recall, I'm having a difficult time getting dd to leave the house due to severe nausea). He promised to see us through this and help in any way. He never talks at you - just treats you like a family member - love him!

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My daughter gets her Bartonella Henselae IgG/IgM tested through Specialty Laboratories in Valencia, CA (now a division of Quest- but not the same as the Quest bartonella test). It's covered by our insurance. Others prefer Igenex Bartonella Antibody & Fish test.

I don't know what it means, but thought I would share our results: June 2010: Positive IgM, Negative IgG Sept 2010: Positive IgM, Negative IgG Jan 2011: Positive IgM, Negative IgG May 2011: Negative IgM, Negative IgG Aug 2011: Negative IgM, Negative IgG *Stopped antibiotics end of September Nov 2011: Positive IgM, Positive IgG Dec 2011: Advanced Labs new culture test: Positive edit- lyme specific band always present during negative result (83-93)

Please go to LymeDisease.org and sign the petition. You can remain anonymous. LymeDisease.org -- empowering patients through education, advocacy and research since 1989 549 people signed this petition. Be the 550th Sign Below REMOVE OUTDATED IDSA GUIDELINES FROM NGC! Treatment guidelines are tremendously important in determining your medical treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC). NGC requires that guidelines be updated every 5 years. The IDSA has not revised its guidelines for more than 5 years. Nevertheless, the NGC recently permitted them to continue listing the guidelines – without updating them – based on the IDSA’s claim that the antitrust review process fulfilled NGC review requirements. This is wrong because: The IDSA antitrust review panel was expressly NOT empowered to revise or update the guidelines; The IDSA told the NGC that it had internally reviewed the guidelines in 2011 and decided they did not require change. However, this review is not listed on their application to the NGC nor is the process of any such review disclosed – as required by NGC guidelines; The IDSA antitrust review process recommended over 25 changes to the guidelines—none of which have been implemented. There also was no consensus on mandatory lab testing for diagnosis; and The 2006 guidelines are not current since they do not reflect new science including the Barthold mouse study and the Embers monkey study. Both studies found persistent infection, which is denied in the 2006 guidelines. Sign the petition to urge: The NGC to remove the guidelines as its listing rules require. The IDSA to revise its guidelines in a transparent process that includes both patient advocacy representatives and physicians who treat chronic Lyme disease.

We used our local Quest, but I have a great relationship with the gals there- had no issues. But even before with different people working there, I would take our Igenex kit in and ask if I could just pay a draw fee and ship it via Fed ex - I never had a problem. If I was drawing other standard labs from Quest they would wave the drawing fee as well. Try calling another lab and see if they will allow it. If not, I would call Advanced Labs and ask for their suggestion. I have spoken with them a few times and have even received return emails.

Thats Bartonella pain and can also be Mycoplasma flare up. If You have added a new abx so it can also be a herx as abx change can stir up things. Need to up drainage. Increase Burbur and Parsley by doing 15 drops three times a day. Give lemon water 2-3 times a day. Fish oil and Flax oil are also helpful for reducing inflammation. Can you recommend a good fish oil/flax oil for kids? thanks For children I recommend 2 teaspoons daily of Nordic Naturals fish oil. Comes in many flavors. is liquid. For Capsules the best is Salmon oil from Biopure and dosage on the bottle is fine. The goal is to give atleast 1000 mgs of the active compounds the DHA, EFA. Flax oil I recommend Barleans Organic flax oil. Don't go for the highest lignans. Average is fine. One tablespoon once a day is good. Thank you

Thats Bartonella pain and can also be Mycoplasma flare up. If You have added a new abx so it can also be a herx as abx change can stir up things. Need to up drainage. Increase Burbur and Parsley by doing 15 drops three times a day. Give lemon water 2-3 times a day. Fish oil and Flax oil are also helpful for reducing inflammation. Can you recommend a good fish oil/flax oil for kids? thanks

Ten days after the blood draw our doctor received a (preliminary) copy of the result. They send a hard copy to follow. We haven't received the hard copy yet - but our doctor is on vacation this week, so it's probably sitting on his desk.

We did it around 2-2:30. If you are making arrangements to have Fed Ex pick it up at your house, be certain they have a late pick up time. We took it our local Fed Ex bldg (10 min away), so there were no issues. edit- It has to get to them within 24 hours.

What an amazing mother and wife you are! Sending prayers your way - hang in there.

Thank you! I really appreciate all of your feedback and encouragement.

dcmom or LLM- I was able to get Dd into a store today (for a webkinz). In order for her to leave the house I had to tell her she wouldn't throw up. "I'm not going to throw up, right?" is what she will constantly ask before attempting to leave. Now, I realize I gave in and I should have said "Most likely you won't throw up and if does happen, it's no big deal - we will take care of it and move on with our day. But once I told her she wouldn't throw up, she said "ok, let's do this" and now she's so proud of herself. Was that wrong or right? I mean, I did get her out of the house, so it's a step in the right direction, right? We still have a long way to go. We actually went to another store as well b4 she asked to go home. Thanks for your suggestions.

Excellent point Michael. That is a good question to ask before putting out that kind of moola. One I asked myself for a few weeks. In the end, when faced with a possible DIL diagnosis, I decided to order it. Truth be told, it was actually a christmas present from my family. Thank you Mom & Dad! lol

Our LLMD feels band 83-93 is very significant and would not run the 31 confirmation test. When I first ran the Igenex WB through our pediatrician, my daughter was 31+, 41+, 93++, 34 & 39 IND. I decided on my own to run the 31 confirmation test because I was concerned about cross-reactivity. It was negative. A month later during our first appt. with our LLMD, he told us he wouldn't have run the confirmation test because of the positive 83-93. He said he would only run it if there were no other lyme specific bands. He said in our case it was a waste of money. Band 31 usually represents an older infection (at least 6 months). Band 41 is not lyme specific, but is usually the first band to appear in most lyme cases. Unfortunately, the co-infections become tricky as well. Our first co-panel from Igenex came back negative. We then tested our DD with Specialty labs and found her positive for Bartonella, but negative for other TBI's. She continues to test positive for bart.

socalmom- I am not familiar with the urine blot. We ran the Igenex Western Blot every 3 mths for a year - and more recently the new culture test. You can order the Igenex WB while on antibiotics (not the new culture).

hmmm...I was under the impression bart was difficult to treat. Or difficult to rid of? Ok- I'm confusing myself. I hope the symptoms resolve again soon.

debbie- we receive 70% (used to be 80%) reimbursement for the Igenex testing. Anything helps. We also do some TBI testing through Specialty lab (a division of Quest in California) and it is completely covered except a small co-pay. It depends on insurance though. If she is getting ready to start antibiotics, then she may want to take advantage of the new test. My daughter has been off abx since end of Sept - ran it the end of December. We haven't received our picture yet - May decide to use it as a dart board.

Like LLM said, P41 is not lyme specific so it could mean other bacteria. But, it is usually the first band to appear in patients with lyme. Unfortunately, there are a lot of different opinions regarding lyme and testing. Our LLMD would probably not treat with a positive band 41 only (by Igenex) without clinical symptoms, but he would probably keep searching if symptoms were present. There are some on here who only had a +band 41 on Igenex, started treatment and retested by other ways and received a positive lyme diagnosis (by provoking it). Also, as stated before, Igenex lab tests for more (and more specific) bands than the CDC does (there is a reason behind it, if interested). I could be wrong, but I don't think Dr. T orders the Igenex WB? He goes by the standard CDC testing, which doesn't test for all the bands. Again, it comes down to a difference of opinion. But in my opinion, a negative CDC finding is not the end of the lyme search. But that's me.

I'm sorry to hear that. My dd also has bartonella (positive by Specialty). She had almost the same issues two years ago before lyme treatment, that went completely away for 11 months while on lyme treatment. When she was doing better, she had no issues (cartwheels,headstands, rode every rollercoaster allowed,exc) - no in-between. My daughter walked in - so I accidentally posted. I wanted to ask if you will be resuming Bartonella treatment?