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Dr. N., Autoimmunity & Inflammation - help me understand?


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Since I can't get a call back from Dr. N., office, even after I offered to pay to speak with him for 5 minutes, I will have to ask you guys a few questions if its fine! I am not sure why, since I have been very patient and did not bother them one bit. They even complimented me on being patient!!! NOW I will turn into devil mom if I don't get a call back, but first I have to decide if it's worth it or should I just move on....

 

My childs, EEG, Spect and Blood work @ NYU was normal. Does this rule out autoimmune & brain inflammation??? (Still waiting for my copies to be available in portal)

 

Can Dr. N. be certain there in no brain inflammation and autoimmune disease? If so, why is his nurse telling me to see their psychiatrists that deals with autoimmunity?

 

My child tested positive for bartonella and lyme. Isn't there always inflammation in the brain with this and are these tic born illnesses considered autoimmunity disease:, and wouldn't a lumbar puncture prove this? I am wondering why Dr. N. mentioned doing a LP at the beginning but after seeing all of her tests, he never mentioned it again.

 

Right now things that make help my child with severe insomnia all seem to be anti-inflammatory's.

(Minocycline, motrin and black walnut oil.) I thought the black walnut oil was killing parasites, but I have read that it works on inflammation too. My suspicions after testing these things is that it is helping her inflammation.

 

Just don't get why Dr. N. would not push for LP to tell us more.

 

Should I insist and keep pestering for an appointment with Dr. N., in hopes for a LP? or should I just move on with Dr. B (Rheinbeck NY) to deal with this mess.

 

 

 

 

 

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I am confused why doctors when looking for an answer don't go the LP when all other tests come back negative. I get how invasive it is, and there are risks, but if nothing else is providing answers why wouldn't you look further? It is the csf that is the very fluid that surrounds the brain, so it makes sense to me that you would look there to find inflammation. In fact, my ds's tests all came back normal. Blood, eeg, mri. I know that the hospital was smug about it and did not want to do the LP for that reason, but the results did show inflammatory markers when they found the O bands, as most of you know. I realize that much of the blood work and other tests can be a indicator that suggest no inflammation or autoimmune...but look at what we found. My thoughts are, if you have not found the answer....you keep looking.

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Lyme is not always in the brain nor is it always autoimmunity. Lumbar puncture would not rule out Lyme. The Lyme might not be in the spinal fluid at the time of testing. I would google spinal tap and lyme. If I remember correctly your daughter is off antibiotics currently and you might consider doing the Lyme Culture via Advance Labs if you would like further confirmation of Borrelia. Low dose steroids have been a miracle for my friend diagnosed with Lyme who was suffering from Adrenal Fatigue. You might consider testing her adrenals & cortisol levels to see if that is an issue. If her cortisol levels are in over drive it could keep her up at night. Any Dr. you are currently seeing could help test her adrenal function.

 

http://www.adrenalfatigue.org/cortisol-adrenal-function

Edited by sf_mom
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I would schedule a follow up appointment with him and get the answers yourself. What did he recommend for follow up? Its really illegal to bill you for a phone call...as least through insurance. It requires face to face, and for the patient to be present in order for them to bill. Offering to pay for 5 minutes of his time is probably not legal in a hospital setting. I know Dr. T does phone consults, but he is not dealing with managed care or insurances.

 

There are two ways to get the answer. 1- call his office and leave a phone message, asking for the question to be answered. REalize that the return calls are usually made by a nurse, which is not a bad thing. If you ask a specific and clear question, its a great way to get an answer.

 

2- schedule a follow up appointment.

 

Tip- If you call asking for the doctor to call you back, and its nor regarding a life or death question, the office might think you are a pain in the neck. (no offense.) Most docs will make calls but only for very complex issues or if there is a special relationship.

 

Just my advise after being in the medical field for so long..

 

Good luck!

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All the labs are in the NYU portal and it's easy to sign up and access, from there you can print them.

 

Also, doctors notes will be in the portal as well as being able to email the doctor.

 

 

I just got through printing all my labs from the mayo portal for which I'm being charged $10,000, had they simply sent me to labcorb - no bill, those mayo people are beyond rude also, so rude.

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I'm confused, if your child tested positive for bartonella and lyme then what more are you looking for? That alone should give you your answer. It takes very specific types of testing to show inflammation in the brain. At the conference, they spoke about this and said that unless the person doing the imaging and the person reading the results knew exactly what area they were looking for it is unlikely they will find the inflammation. You know there is inflammation because there are symptoms. You need to find an experienced LLMD and start treatment instead of trying to get traditional medicine to give you confirmation of something you already know.

 

Dedee

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These are not "normal" mainstream doctors. They are doing research and treatment that nobody else in the U.S. is doing.

They are highly trained and experienced in brain imaging and work with a very respected radiologist, whom I met, and I can say she was superb.

 

Here is one of their research papers: http://www.jneuroinflammation.com/content/10/1/43

 

Here are different medications that have anti inflammatory properties: http://www.jneuroinflammation.com/content/10/1/43/table/T3

 

Here is what they are looking for in labs that INDICATE neuro-inflammation: http://www.jneuroinflammation.com/content/10/1/43/table/T2

 

 

 

I don't know much of anything about lyme though so I can't comment on any of that. I had abnormal: cytokine levels (pro-inflammatory), T cells, and B cells........ they mentioned some other things they found in my labs but I can't remember, too tired.

 

P.S. The research I linked it all done by neuros at nyu and several in different locations around the U.S. Dr. Najjar was one of the authors. But it might be helpful to compare your daughter's labs to their chart (link 3).

Edited by Guest
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I believe they have been treating with Dr J for some time with little improvement. Recently trinity posted that there had been some positive bowel response to Align (B infantis) and black walnut hull which leads me to think that gut dysbiosis might be involved.

 

Some good information on SIBO in this blog:

 

http://drbganimalpharm.blogspot.ca/

 

And more specifically on how to help fix the problem here:

 

http://drbganimalpharm.blogspot.ca/2013/11/how-to-cure-sibo-small-intestinal-bowel.html

 

Gut dysbiosis has been linked with autism and cytokine dysregulation and may cause behavioural problems:

 

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0037932

 

http://physio.ucsf.edu/GEMS/courses/Immunology/materials/fa12_essential_immunology/august_29/kuchroo_nature_medicine_jclub.pdf

 

http://drbganimalpharm.blogspot.ca/2014/01/two-case-studies-diarrhea-ibs-and.html

 

Gut function impacts the function of the immune system.

 

In the last few weeks our DD had been developing more dark circles under her eyes as well as some return of motor ticcing (a level of 3/10, up from 1/10 suggestible only) which we hadn’t seen since April. All of a sudden she developed a symptomatic yeast infection. After one 500 mg capsule of diflucan all symptoms resolved, under her eyes cleared up right away, but then started coming back after about 10 days.

It was then I realized that the herbal protocol she is on may be stonger than I thought. In a quest to eliminate some of the supplements she was taking I had stopped supplementing with curcumin, OrthoFlora yeast support (oregano oil, black walnut, caprylic acid) and encapsulated probiotics, using only sauerkraut for inoculation of gut bacteria.

 

Upon reinstating the full probiotic protocol we used during abx treatment and restarting the yeast supplements all of her symptoms have cleared.

 

Healthy gut bacteria are impacted by glyphosate (thanks 3bmom):

 

http://www.mdpi.com/1099-4300/15/4/1416

 

http://articles.mercola.com/sites/articles/archive/2013/06/09/monsanto-roundup-herbicide.aspx

 

so obviously immune function will be impacted as well.

 

Another good blog on gut/immune interaction:

 

http://gutness-gracious-me.blogspot.ca/

 

 

Edited by rowingmom
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