philamom

Maybe it would be helpful to get a letter from one of the leading PANDAS specialist to take to your Neurologist appt. in July.

Thanks aidan'smom - I missed it somehow. When you click on the link it goes to the second page. There is additional info on the first page as well. fyi

Sorry, don't meant to hijack the thread. Ellen- I'm always thinking of your son and your family. Sending prayers.

Prevention News What You Need To Know About Lyme Disease Is A Tick Bite Causing Your Depression? The symptoms your doc could be missing By Leah Zerbe However you feel about the mild winter we just experienced (Yay for less shoveling! Boo for global warming!), one thing no one’s excited about: The explosion in the tick population it caused. And while most people know that ticks can carry Lyme disease, many of us know very little about the hard-to-pin-down disease. Here’s how to recognize the symptoms and protect yourself from Lyme disease. What is Lyme disease? There’s a reason experts call it “The Great Imitator.” Lyme disease results from inflammation caused by Lyme bacteria, and the symptoms can mimic everything from rheumatoid arthritis and lupus to anxiety disorders and depression. Most often the result of a tick bite, Lyme disease's range of devastation is daunting: The same Lyme germ causing joint pain in one person could lead to symptoms associated with multiple sclerosis and Lou Gehrig's disease in another. Caught early, short-term antibiotic treatment can usually wipe out Lyme disease, but left untreated, the disease can move from organ to organ, creating a wide variety of physical symptoms that come and go. On the symptom list: Headache Stiff Neck Swollen lymph nodes Ringing in the ears Heart palpitations Brain fog Acid reflux Sensitivity to light and sound Extreme fatigue Fever and chills Muscles and joint pain Bloating and diarrhea in children and teens What about psychological symptoms? Lyme disease can also cause startling changes in personality and mental health, including depression, self-mutilation, and panic attacks, says Leo Shea, PhD, president of the International Lyme and Associated Diseases Society. "There can be a decline in processes of brain function—attention and concentration problems, memory problems, and the inability to deal with multitasking." How? Lyme disease causes increased pressure in your head, and blood can't flow well into a high-pressure zone, says Andrea Gaito, MD, a New Jersey rheumatologist specializing in the treatment of Lyme disease. Who’s at risk? While most of us associate Lyme disease with long walks in the woods or tick-infested areas like Connecticut and Pennsylvania, the truth is, tick bites usually occur in people's own backyards—all around the country. How is Lyme disease diagnosed? The bull's eye rash is often called a "classic" Lyme symptom because it guarantees you've been infected, but studies show that the majority of infected people never get the telltale rash. The ELISA test, the standard blood test commonly used to diagnose Lyme disease, is only 45-65% percent accurate, and other tests are even less accurate. "It's really a worry because patients can be misdiagnosed with another disease while the causative Lyme disease may go untreated and worsen," says Dr. Gaito. What’s the best way to prevent Lyme disease? Your best line of defense is a tough offense—preventing ticks from latching onto you in the first place. Exercise and eat well. Heat and oxygen help demolish Lyme bacteria, which makes regular workouts a must. It’s also key to avoid disease-fueling processed foods and excess sugar (good advice in general!). Fend off ticks with lemon. Dr. Gaito favors natural moisturizers or sprays containing pure essential oils from lemons to repel ticks instead of harmful, chemical-based products like DEET. Feel for unfamiliar bumps. Get to know the natural raised areas on your body, like moles and scars. Then, run your fingers over your skin and scalp before you go to bed every night, particularly if you’ve spent time outside. An unfamiliar raised area could be a tick getting ready to hunker down for a blood meal. Pay special attention to the places ticks like to hide—armpits, bra and panty lines, and the groin. Scrub-a-dub-dub. Bath time presents a great opportunity for Lyme prevention, not only giving you a chance to check for ticks, but also the ability to wash off ticks that haven't attached yet. A Yale study confirmed this works: The combination of doing a body scan and taking a shower within two hours of being outside significantly reduces the chance of getting Lyme disease. What do you do if you find a tick? First, remove it. Pull it out with a tweezers and don’t squeeze it, as this may force any bacteria in the tick into the body, says Dr. Gaito. Clean the area with alcohol and apply an antibacterial ointment. Get it tested. It's wise to have the tick tested, particularly if you live in an endemic area for Lyme disease (Not sure? Click here). Look online for a lab that can test ticks, such as New Jersey Laboratories, and follow directions for sending them in. See your doctor. “Early treatment is the most effective,” says Dr. Gaito. “I like to see patients within 24 hours of finding the tick to get them treated early.” Consider a specialist. Before receiving a Lyme diagnosis, many patients report seeing dozens of doctors and undergoing countless tests. If you believe you have Lyme disease and your current doctors aren't helping you, keep looking. You can find a specialist through the International Lyme And Associated Diseases Society’s website. You’ll also find info about other tick-borne infections you could be dealing with, such as babesiosis, anaplasmosis, and bartonella.

Good find - thank you so much. Sums it up.

Hi. My daughter has a low vitamin D (25-OH) result, but an elevated 1,25 (OH)2 Vit D total. Does anyone know what the elevated 1,25 means? thx

Hi. My daughter has low vitamin D, 25-OH, total: 26 (range 30-100). But, her vitamin D 1,25 (OH)2, total is elevated. Does anyone know what that could mean with the 1,25? oops - posted in wrong forum

I've had Raynauds 20+ years - never heard of the mold connection. hmmm

I agree with NancyD. I wonder if you could get in a phone consult with Dr. J (at least for your 10 month old). Not sure the cost of it. Sending prayers!

Wait til Sunday

Yes, I know we would all like to see that. I was being cynical-sorta funny (or not so funny) I think your perspective is correct regarding the Livedo Reticularis. Hopefully, you'll see continued progress with the Tindamax. Stay strong! Btw- amazing doctors you have.

Thank you SF Mom for your response. Uggh - I was so hoping to hear the treatment brings instant relief with no regression whatsoever (ok, banging my head now). I think I need to hold off a little before adding something that may increase symptoms. I just got my daughter back to school for 5 hours a day - If I lose that, I'm pretty sure some official will be at my doorstep the next day. We have an appt. with her LLMD soon, so I will bring it to his attention. I may pm you for more information on the test. Always thinking of you and your family!!

Colleen- When we had our initial LLMD appt. our daughter also came back positive for RMSF IgG (super elevated- 1:256). Her doctor said it was just more evidence of tick borne infections, causing symptoms. I'm not sure he even treated for it - or, the abx he put her on for the lyme/bart treated it as well. She still test positive, over a year later, but only slightly elevated. Hope that helps some. edit- daughter's RMSF IgM was negative.

Thank you all. I read in the link that Dr. Kling feels all patients with chronic lyme should be taking Lumbrokinase (boluke). Anyone using it on their children? Any negatives with boluke or nattokinase?

My daughter only had two in the normal range and was plagued with chronic sinusitis since 18 months old. She received IVIG coverage with documentation of both.

I'm suprised a CBC wasn't ordered - I think I would request it. My dd's Triglycerides jumped from 82(November)_to 227(December). Still high in March at 187. Her total cholesterol has been flagged low since September.

Definitely not due to dehydration (she drinks a lot). I will look into the nattokinase - thanks.

My daughter has been having issues with her veins lately. Actually since September. She never used to have any problem with blood draws and infusions - was even told all the time what great veins she had - easy patient. I could put emla cream on and leave it on for an hour, still with no difficulty. Now she constantly needs to be pricked several times, sometimes in both arms. It doesn't make a difference who does it. I can't use the emla more than 15 minutes. I recall that lyme can thicken the blood, right? At one time I was taking Rechts Regulat. I think it helps the blood to flow better, but it was very strong tasting and I know my daughter wouldn't tolerate it. Is there any other products that would be helpful? thx

For the most part, this guy was very non-toxic, EXCEPT when it comes to ticks. He recommends spraying your yard (at least perimeter) three times a year (mid May, mid June, and October). I think he mentioned pyrethoid- not sure about pets though. He said in 2013 & 2014 (developing now) there will be some great non-toxic property sprays for ticks. He showed some pictures of high risk properties (I think one was my house - ) with heavily landscaped areas of ground covers, perennials, bushy shrubs. I need to do a good clean up and thinning out. He said to absolutely never pile your kids up with leaves (old time favorite). I don't usually drink - but I had one last night. Best suprise of the meeting - I got to meet an old (doesn't post anymore) forum gal - kmom!

Hopeny- I attended a support meeting last night where the focus was prevention. The guest speaker was a director of TBDA, prevention. He shared some info. on how to protect your pets (dogs). He said it would be helpful to put a smaller fenced in area (containment) in the grass, away from the perimeter of your property - especially if the perimeter is woodland or landscaped beds. But only if your yard is safe. He also mentioned topical sprays/spot on treatments, immunization, grooming to keep hair short. He said to absolutely not sleep with your dog. He mentioned a certain tick (maybe lone star?) that can give you a co-infection from just touching the tick if you have a cut or opening on your hand. Fortunately, there are products for pets (frontline) to help lower the risk. Other tidbits I picked up. He recommended Avon Bug Guard Plus Expedition as a repellent. He wasn't crazy about Deet, but mentioned Ultrathon if you're going to use it - didn't like it for kids. He also uses Repel Lemon Eucalyptus, but wasn't really certain about it's effectiveness on ticks. He highly recommended the Insect Shield line and/or using peremethrin on your clothes. He said to spray peremethrin on your outside shoes/sneakers, let dry completely before wearing - do it monthly. Especially good for kids going to camp. socks too. Suggested Damminex tubes (spring & fall) esp. around wood/brush piles, stone walls, rock piles, sheds, etc. And of course the usuals- avoid leaf litter, ground covers, deer trails, edge of woods, bottom of large trees, stone walls/sitting on logs (mice habitat - major tick exposure), bird feeders- robins carry alot of ticks because they are ground birds and live longer (plus the mice, which are nocturnal love the left over seed on the ground). Stay away 7-10 feet (danger zone) from edges of woods, backyard landscape beds, marsh, sheds. I'm sure most of you know all this by now. I'm in PA- high risk of exposure- so this may not be necessary for some.

I have faith that all of our kids will get healed. I've never seen a more determined group of parents ready to do whatever it takes for their kids. We will get there. Amen! Nicely said fightingmom.

My daughter's dysautonomia like symptoms have resolved (for the most part) since being put back on antibiotics for lyme disease. We had an appt. scheduled with a cardiologist who specializes in dysautonomia/POTS, that we were able to cancel.

Fightingmom - I agree with you, but I will not send my dd to her 3 yearly school field trip (day) into the woods, not even with protection. I will teach her the science lesson, and/or maybe take her to an indoor scince museum, but at this time while she is still fighting to get better, I will keep her home. Her immune system couldn't handle another assault right now - maybe when she is better. Unfortunately, some of the 14 year old boys that I see at our LLMD's office are not out wandering thru the woods, chucking rocks in the stream - they are walking with canes, using a wheelchair - many are not. Yep, you are right, education/ protection is best, but for a little longer I think I'll sorta hold onto that bubble.

I think there is room in my message box, but people often tell me it's full. Try now... I tried again - it says your message box is full.

Hi Lily. I was trying to pm laure to ask her about the teeth staining. It's probably not a good idea to put your email address on a public forum. Take care.