NancyD

Mommybee, you are welcome to email me. I live in MA. My DD16 has PANDAS/Lyme/Bartonella/MTHFR and has a fabulous out-of-district placement (she is also on an IEP). She can take additional time for tests if needed and can take tests in a small quiet room (although her class size is really small and no longer needs an accommodation). In earlier years she could have the option of taking tests orally. We have seen Dr. B but for IVIg but we see a great integrative MD in NY who has expertise in treating Lyme/co-infections, PANDAS, MTHFR, etc. I highly recommend you see Dr. J or another MD who has the expertise to treat TBIs. Nancy

It is very difficult to get a positive on any Bartonella test. There is only one that I know of that has high sensitivity but with that test you need to be off all abx. Have you considered doing the A-Bart herbal challenge? I highly recommend that you see an LLMD or an integrative MD who has expertise in treating TBIs. Bartonella can be very difficult to treat so you want to be with someone who really knows what s/he is doing. Someone who can guide you through detox and support of the liver and adrenals with the appropriate supplements. Very important. Dyes would be the first thing I would eliminate from DS' diet. That would be the easiest to do and could have huge impact. Whenever my DD ingests any dye (even the slightest trace) it magnifies her symptoms ten-fold. Dyes must cross the BBB very quickly.

For my DD I have to break out every vitamin and supplement individually since she is sensitive to too many things.

Ash, Any doctor -- even your pedi -- can order a MTHFR DNA test. As far as who to treat, typically these are integrative doctors or DAN doctors who understand how to treat MTHFR mutations. Nancy P.S. The test is not complicated. It's a simple blood test.

I know exactly what you mean, Nancy. That's my primary concern. If you don't feel the counselor at his school will steer your DS to the best school for his needs then I would definitely consider hiring the consultant. You can always call and get a price. The cost might be worth it in the long run when you think about how much money goes into a 4-year college.

I have NEVER been able to give my DD B complex. I have to break down the Bs and give them to her individually. I suspect the problem is with inositol, which she has never been able to take, or the folic acid, which I now know she cannot convert (she is homozygous 677 MTHFR).

I think it's accurate, Kiera, but I don't know the % sensitivity of the test. You could call Dr. Quadros' office and ask. Yes I found the article (in fact I think this is the article the Dr pulled up on-line in the consult!) but I can't see where there is a current study where I can send blood? I'll read through the whole article later, but if I can send blood instead of an LP that would be great! How accurate is it, do you know? Tx so much.

Hi Nancy, Although you can't get an IEP for college you CAN get a 504 plan. So that is something you can begin discussing with your current team. At my DD's school they have a year-long class they take that is specific to college applications. All of the work is done at school and they have a counselor dedicated to working with them. They even go visit two colleges together as a group. There is a book I just purchased called Preparing Students with Disabilities for College Suggess: A Practical Guide to Transition Planning by Stan F. Shaw. I have not yet read it but it looks useful. Nancy

Kiera, there is a blood test you can do through a research study In NY. Follow the link to the thread above and it should lead you to information about this study. The cost is $100 and insurance won't cover. I'm out for the evening but if you can't find it let me know and I will send it to you later tonight or tomorrow morning.

In FL there is Dan Rossignol and Jeff Bradstreet. They would know how to treat MTHFR.

See the following thread: http://www.latitudes.org/forums/index.php?showtopic=17846&st=0 I meant Leucovorin not Lovenox. Lovenox IS actually used for women who have MTHFR to sustain a pregnancy, but thankfully this is NOT our concern!! I got the two confused. Leucovorin is folinic acid, which is step 2 in the methylation process. .

Oy...fine for me but not for DD. Can't possibly take her off her abx. I bet their high sensitivity is based on no abx. I did the tripe draw. The risk of missing bart is not worth doing a single draw. I even had my dog tested to make sure he was not the source of my bart. I was lucky as my Vet did not mark up the cost of the test. They have been testing animals for years at NCSU vet school. This test has only become available for humans since last fall. red- were you off antibiotics when tested? I just read on their order form that they recommend no abx 2 weeks prior to sample.

Not that low but my DD started out with 24 and 18 mos later after agressive treatment she scored a 20. Don't get it...

I know I have already said this offline, Tiffani, but... I think her results are suspect. And given her symptoms I would see a good LLMD. Didn't you also tell me that band 45 was positive? Sometimes people who have this band positive also have Ehrlicliosis. Band 31, as you know is Lyme specific and IND means present but not as intense as the low reading (+).

Yes, both DD and I did and our MD put us on thyroid medication. We monitor levels every few months.

That's great news. Thanks for checking. Hmmm...we're in MA but our Md is in NY. Would we have to get our MA Md to order the test for us? I'm now up to 15 drops twice daily of A-Bart and so far no symptoms...(here's hoping!) I am not familiar with "Bart Challenge". I would like to hear about it. My diagnosis came through PCR/DNA at Galaxy Diagnostics. It is headed by Edward Breitschwerdt the DVM who has discovered over 20 additional species of bart. http://www.galaxydx.com/web/human-health/ Red Just wanted to mention that I contacted the company about their bartonella test and they are now licensed in all states, except NYS which they hope to complete by the end of the year.

The only thing that helped my foot pain was Rifampin. The herxing from it was bad but in a few weeks I felt so much better. DD and I both had negative Bartonella tests but there was no doubt in our doctor's mind that we had Bartonella. You could take this test. They claim 99% sensitivity. http://www.galaxydx.com/web/human-health/faqs/

My DD was on Diflucan for years without any problem and then when we started treating for Lyme and Bartonella her liver function stayed elevated no matter what we tried. We switched to Amphotericin B two years ago and liver has been normal ever since.

Very timely too, so thanks for the info about this test, Red. We were just about to go for our 4th PCR test, which I think is useless since the first 3 were negative, yet we have always herxed badly with Rifampin and symptoms are consistent with Bartonella.

Below is info on A-Bart (Byron White Herbal Formulas) for provoking and treating Bartonella. I have not heard of the Bartonella ePCR test. If, in fact, they have 99% sensitivity with this test why doesn't anyone know about it? Any one else use this test? http://www.galaxydx.com/web/human-health/faqs/'>http://www.galaxydx.com/web/human-health/faqs/ Red, did your insurance cover this test? http://www.wayneanderson.com/pages/formulas/abart GUIDELINES FOR THE BYRON WHITE FORMULAS A-BART INDICATIONS Primary Provoking Action of A-BART: This herbal formula is designed to activate the immune system in acute and chronic the Bartonella infections. It is equally effective for Bartonella Like Organisms (BLO). It can be useful in the management of Borrelia, other co-infections and opportunistic pathogens. Secondary Provoking Actions of A-BART: Bartonella infections are thought to be more common that Borrelia infections. We know the tick borne infection come in groups. A-Bart has been engineered to act on the accompanying co-infections and opportunistic infections. It has action against the Borrelia, Babesia and Mycoplasma species. A-BART will have an immune modulating effect for the patient with chronic infections. It will have some immune activation against fungal, viral, and parasite. REGULATORY MECHANISMS OF A-BART: The synergistic herbal combination acts specifically on the nervous system helping with pain, anxiety, sleep, headache and restlessness. The formula balances Serotonin and other neurotransmitters helping the patient to deal with depression, insomnia and pain. A-Bart is designed to improve the detox pathways. As with all neurotoxins, methylation is slow and lymphatic flow is congested. This formula is designed to enhance the binding and excretion of toxins through the system. Auto immunity can be improved as A-Bart works to reduce inflammation, decreases congestion and improves circulation. This combination helps with muscle spasm, joint pain, hypertension, hypotension, digestive difficulties, gastritis, ulcers, sore glands, and sore throat, diarrhea and blood sugar difficulties. It has a tonifying effect on the GI tract, liver, lung and lymphatic systems. REGENERATIVE MECHANISMS OF A-BART: The nature of the herbs and their combined anti-bartonella, anti-fungal, anti-bacterial, vermafuge, antiviral, anti-spirochete, anti-malarial, and anti-Candida benefits allow the agents to be driven deep into other tissue. This synergistic nature of the herbs allows them to reach and renew tissue that would otherwise not be reached. Patients with Bartonella can have compromised digestion and thus inadequate nutrition. This herbal combination provides nutrients in a form that is easily digestible. It is rich in B1, Vit C, Niacin, Iron, Potassium, protein, Beta-sitosterol, calcium, chromium, Cobolt, Gaba, Epsilon-sitoterol, magnesium, magnesium, parigemin, phosphorus, pollinastanol. Selenium, silicon and dietary fiber. This formula helps the biosynthesis of cholesterol. Helps restore neurotransmitter balance, restoring sleep, memory, concentration and mood. INGREDIENTS: Gou Teng: Has been used for centuries to lower the excitability of the central nervous system. Chinese medicine has used this herb for hypertension, convulsions, headache, dizziness, and apoplexy. It increases serotonin that can result in multiple mood and cognitive improvements, including OCD, IBS, fibromyalgia depression and anxiety. Neem: This herb's anti-viral, anti bacterial and anti-fungal activities are well documented. There is evidence for its use in pneumonia, ulcers, gout, diabetes, hypertension skin infection and wound healing. The essential fatty acid content in Neem is high. Grapefruit Seed: Grapefruit seed is considered therapeutic against hundreds of different bacteria, virus, parasitic and fungal strains. The extract form the seeds are used in the intestinal track to inhibit infection as well as balancing healthy bacteria. It is a strong antioxidant that has high nutrient values including biotin and Vit C. It is helpful with lymphatic drainage and the elimination of toxins. Indian Sarsaparilla: This herb has its action on circulation, autoimmunity, joint disease, digestive issues, and viral infections. It is potentially most important as a rich nutrient and alkaloid source. This is a rich source of saponin, panillin, cetyl-alcohol, cobolt, pollinstanol selenium, smilagenin, stigmasterol, zinc, Beta and Epsilon-sitosterol to name just a few. Poke Root: Pokeroot helps to detox the Lymphatic System. It stimulates the production of B and T cells by the immune system. This herb is active as an anti-inflammatory, anti-viral, and antibacterial. It is rich in alkaloids that have antihistamine effects. It increases the brains production of GABA. Licorice: Licorice binds to many types of neurotoxins making it important as a detoxification agent. It is a mucogenic agents that sooth stomach and duodenal ulcers. It has been used in the treatment of chronic fatigue syndrome and thought to have antiviral effects. Garlic: has been used as a broad-spectrum antimicrobial and metabolic agent. It has historically been used as an anti-fungal, anti-bacterial, anti-spirochete, anti-septic, diaphoretic, diuretic, expectorant and heavy metal chelator. It supports liver detox and decreases LDL cholesterol. It is a cardiovascular tonic, helps with the biosynthesis of fatty acids phospholipids and acts as an anti-clotting agent. Clove: This herb acts as a tonic, febrifuge, antiseptic, anti fungal with anti parasitic activity. Artemisia: This herb has wide recognition as an anti-malarial, anti-fungal, anti-caner, anti-spirochete and enhances natural killer cell response. It also counteracts hyper coagulation. Usnea: This herb is a broad-spectrum antimicrobial affecting virus, protozoa, Candida, trichamonas, Chlamydia, etc. Also is an analgesic and cyst buster. RECOMMENDED DOSAGE: Start with 1 to 5 drops twice daily in water. Increase or decrease drops depending on patient response. Dosages are highly individualized. Target dosage: 15 drops twice daily. Challenge dosage: 20 drops or more two times daily as directed by a health care provider. I am not familiar with "Bart Challenge". I would like to hear about it. My diagnosis came through PCR/DNA at Galaxy Diagnostics. It is headed by Edward Breitschwerdt the DVM who has discovered over 20 additional species of bart. http://www.galaxydx.com/web/human-health/ Red

LOL re your general contractor comment. How true that is! Ken Bock Is located in Rhinebeck, NY. We have been seeing him for almost 10 years so if you have any questions feel free to email me. He treats my DD16 for PANDAS/Lyme/Bartonella//MTHFR/etc... and me for Lyme/Bartonella. He's an excellent medical detective!

An excellent article written by Dan Olmsted and Mark Blaxill, Age of Autism http://www.ageofautism.com/2012/07/tics-and-toxins-new-evidence-raises-pesticide-concerns-in-new-york-state-outbreak.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+ageofautism+%28AGE+OF+AUTISM%29

We have been dealing with PANDAS for 14 years. DD had her first onset at age 2, two weeks following impetigo. Symptoms included anxiety/OCD, tics, rages, and sleep issues. She was not officially diagnosed with PANDAS until age 7 and has been on abx ever since. So she was untreated for 5 years. The prepubescent years and early teens were really bad and it was not until she first started receiving IVIg in 2009 that we had any relief. But the remissions did not last for more than a year and we discovered two years ago that she had catastrophically low D levels and underlying Lyme/Bartonella/MycoP, which I believe she got congenitally from me, as well as deficiency in zinc and homozygous 677 MTHFR. Since treating the underlying infections we have not had any exacerbations. And now we hope that by treating her zinc and D deficiencies and getting around her methylation issues we can finally get her on a healthy path. The only remaining symptom is anxiety/OCD, which I believe may be tied to either Baronella or MTHFR and we are addressing now. So my message is...it's never too late to treat. Treat aggressively and see one of the top PANDAS experts. Don't waste any more time. Be sure to look for other possible underlying infections and check for possible MTHFR mutation and KPU.

I just did a quick search and found the following link where they also mention this. Doctor did not tell us this. I'll start doing it. I also read about taking A-Bart on an empty stomach but my doctor never mentioned this either. Do you take on an empty stomach? Thanks for your help! http://lymepedia.org/a-bart-treatment-instructions/

For really quick results what helped us was ibuprofen 3x daily and long Epsom salts baths. Long term what helped the most was IVIg and getting to the underlying infections other than PANDAS (e.g., Lyme, Bartonella, mycoP, etc.).