philamom

ditto the question...I guess intestinal yeast is one concern. What are the tests, and is this something a regular doctor (ped) would know about and order? Candida Albicans AB (IGG,IGA,IGM). I would probably run a stool test as well. These both can be done at Quest and in our case were covered by insurance.

Comprehensive Metabolic Panel (which includes liver functions AST/ALT), CBC (does not include liver functions - not with Quest anyway)

Another good reason to work with an lyme literate doctor. There are times when you shouldn't work through a herx and back off with treatment, like LLM and momcap stated. After being off abx in fall/winter, it took my daughter 3 months to resume her Amoxicillin full strength. When trying to increase by 250mg increments, her LLMD advised us to stop if there were any signs of excessive herxing, and try again in a few weeks. She stayed at 500mg for a month. She was showing signs of distress/inflammation at the time. Also, she can no longer tolerate zith (another abx she was on) for treatment. If the headaches continue to be excessive after a few days, you may want to call to inquire.

I agree with LLM. You may want to try some lemon water and an epsom salt bath. Definitely have him drink extra water, if possible. Also, are you giving him probiotics?

Fantastic! Wishing him well. My stepson is graduating from State College in December (super senior) - maybe they'll share a mountain dew together . Kudos Mama

evergreen- I can pm you some names in North Jersey. They treat both traditional/alternative. Red- I am sorry for everything you've been thru - that's a lot of doctors.

When my daughter was younger and had issues falling asleep due to symptoms, we used Natrol Melatonin liquid (Rite Aid). It was recommended by a neurologist at the time. We were able to adjust the amount to help her fall asleep but not make her feel groggy in the morning. We mixed it in juice. Now I use Source Naturals Melatonin Sublingual (orange flavored) 1mg tablets off/on for myself and dd. You could easily break the tablet in half or quarters. It dissolves under the tongue. Purchased them at Whole Fields.

If ordering the Bartonella testing through Quest, be certain the doctor specifies it be done at Quest Diagnostics Nicholas Institute of Valencia (see website for details). This is what my daughter's LLMD uses on her. It is covered by our insurance. www.specialtylabs.com

Tick transmitted Bartonella behaves differently than other forms of Bartonella. Psychiatric symptoms are more prominent, and can be severe.

HI Julia, Vitual academy is specific to your state or all states? I am opting for homeschool since Kinder is such a breeze and healing is most important at this time. It is a country-wide school but is only offered free in some states. Just googled "What states have Virtual Academy for Free" and came up with several. Thanks! I think I will opt to homeschool, kinder is so easy anyways. He's between kinder and 1 st so I can tailor his studies. I didn't realize CA state law doesn't require school til 6. smart move (imo). work on healing your child and strengthening his immune system.

I went through all of this last fall/spring with my daughter (symptoms & labs). I would recommend checking for lyme with Igenex. The Western Blot cost $200 and can be submitted to insurance for reimbursement. PM me for more details on the lupus and if you would like the names of all the tests I ran through Quest. You could have your ped order them before your appt. with the Rheumy and save some time.

Here is what I did when dealing with that issue. It didn't always work though, depending on if it was sensory, ocd, or defiance related. I would pay my daughter to take her meds. When she got a little better I was able to stop the bribe and continue with her meds. Since she is four, maybe you could wrap some cute little gifts (from dollar store) and offer her one if she is able to take her zith. You could also find a compounding store that could add a flavor. They can tell you which one works best with kids. Sorry and good luck!

what is TGF-B1? Taken from Shoemaker's website TGF Beta-1 - Transforming Growth Factor Beta-1 Normal Range: <2380 pg/ml TGF Beta-1 is a protein that has important regulatory effects throughout innate immune pathways. This protein helps control the growth and division (proliferation) of cells, the process by which cells mature to carry out specific functions (differentiation), cell movement (motility), and the self-destruction of cells (apoptosis). The TGF Beta-1 protein is found throughout the body and plays a role in development before birth, the formation of blood vessels, the regulation of muscle tissue and body fat development, wound healing, and immune system function (especially regulatory T-cells). TGF Beta-1 can impair T-regulatory cell function, which in turn contributes to the activation of autoimmunity, yet TGF Beta-1 also plays a role in suppressing autoimmunity(!). TGF Beta-1 has become important in the exploding incidences of childhood asthma, raising the tantalizing issue of remodeling due to biotoxin exposure. The EPA says that 21% of all new cases of asthma are due to exposure to Water Damaged Buildings. If an individual develops wheezing after exposure to a water damaged building, look for remodeling to be the cause. Remodeling means "something" happens that the airway changes to be more reactive and in need of medications to reduce wheezing. Neurologic, autoimmune and many other systemmic problems also are found with high TGF Beta-1.

My daughter and I are always low. I recently saw a functional medicine doctor who recommended 5,000 IU daily. She suggested I take a 50,000 IU capsule of D3 once a week for 6 weeks and then retest. I tried 2000 IU drops and 1000 IU capsules on my daughter and noticed a reaction. I'm going to try a lower amount.

Christianmom- don't have any advice regarding the tonsillectomy, but was interested in what Dr. T said regarding the TGF-b1. My daughter also tested high when done a year ago. Her result was 5260 (ref range 344-2382). Never received any explanation from her doctors. So glad to hear of your son's improvement!

Is he currently on antibiotics? I would increase shortly before and few days afterwards. You may want to try Motrin right now for inflammation. Ugggh! Really sorry to hear that - hope it only last a few days.

Autoimmune conditions associated with positive ANA- SLE, Scleroderma, Raynauds (which I have), DILE (drug induced lupus), Autoimmune Hepatitis, Mixed Connective Tissue disorder. In addition, a positive ANA can occur in normal individuals. We are still trying to figure out if my daughter's abnormal labs are due to infection, autoimmune, drug induced lupus, or all the above (she has some other abnormal labs too).

I think it can be strep related (or infection related).

LLM- You are such a wonderful resource! Thank you for all your input.

infection, inflammation, autoimmune - it's very unspecific. My daughter's ANA has been positive since November. She was tested a few times prior and it was negative. She's been tested 6 times since November and the patterns & titers have at times changed. Her patterns are homogeneous, speckled, nucleolar. Her titers run form 1:40 - 1:640. Might want to run DNA (DS) Antibody, SM/RNP Antibodies, lupus anticoagulant next blood draw as a follow up.

Aimee De P- I love your webpage & blog! Fantastic - thanks for sharing. I'm also guilty of titer chasing. You can find great information on PANS/PANDAS at (IOCDF) www.ocfoundation.org/PANDAS One of our doctor notes: ***** has a history of PANDAS (Pediatric Autoimmune Neuropsychiatric Disease Associated with Streptococcus). This is a post infectious auto-immune disorder that effects the basil ganglia of the brain and causes neuro-psychiatric and behavioral abnormalities. This is a medical condition, not a psychiatric disorder. Due to the history of this disorder....

I just received the Metametrix kit for complete stool analysis. Should I wait until Dd finishes the Nystain, which was prescribed for a month (with possible refill) or go forward with it?

That is great news! Good luck!!

My daughter had postural tachyardia symptoms with her last flair. We were just about to take her to a cardioligist at CHOP who specializes in it, when she started to get better - so we cancelled the appointment. Also positive ANA, elevated sed rate & c. reactive protein. We went to a Rheumy who helped rule out some other possibilities. My daughter has pandas, lyme, bartonella. She was dealing with neuropathy before this flair began. On a side note, my daughter was on combo of abx for the lyme & co-infections. In Sept. she was taken off all medication for elevated liver functions. Unfortunately, she was also dealing with strep at the time with elevated d-nase, and she soon started to regress. The end of December we tried putting her back on one of the abx she was on - azith (2nd attempt), and that's when the tachycardia began, along with severe vertigo, nausea, gerd, and GI complaints. Her LLMD said she could no longer tolerate the azith. So not sure if it was drug induced, but just wanted to mention. She is now back on Amox full strength (took 3 months to do this) and is suprisingly doing much better. Her labs are getting better as well. Here is an article I have on file: Vagus Nerve Involvement with Lyme Disease (by Richard Rhee, MD) The vagus nerve (also called the tength cranial nerve) is the longest cranial nerve and one of the most complex nerves in the human body. It originates in the medulla oblongata (part of the brain stem) and travels to the pharnyx (throat), larnyx (voice box), trachea (windpipe), lungs, heart, esophagus, and intestinal tract to the transverse portion of the colon. Disease that cause neuropathy, like lyme disease and diabetes, can damage the vagus nerve. The vagus nerve activates muscles in your throat, which are vital to a healthy gag reflex, coughing, vomiting, swallowing, and the ability to speak. It also acts like a brake on the heart, slowing down the heart rate- impairment may result in heart palpitations or tachycardia (fast heart rate). Depth and frequency of breathing as well as blood pressure are regulated throught the vagus nerve. The abdominal branches regulate the stomach, pancreas, small intestines, large intestines, and colon. The vagus nerve also affects the kidneys and gall bladder and stimulates liver function. Once treatment has begun with antibiotics, most patients with vagus nerve involvement report an improvement in symptoms. Common Symptoms Caused by Vagus Nerve Impairment: hoarseness slurred speech vomiting palpitations or tachycardia shortness of breath high blood pressure difficulty swallowing gag reflux impairment GI motility dysfunction diarrhea frequency of urination

Is anyone taking these two products daily? I realize they need to be seperated but can they be used daily? Or do you avoid Sach boulardi altogether while using an antifungal? thx