philamom

Jen, My daughter(10) is also receiving IVIG. She has lyme, bartonella, and PANDAS (PANS). We see the same doctor(s)- I think. I hope you see continued improvement in your son with the addition of Amox. You can send me a private message if you have any questions. I was wondering if you continued with the Rheumatologist after the lyme diagnosis and what their reaction was to the lyme? My dd is scheduled for a rheumy appt. in two weeks and I am worried about what they will say regarding her chronic lyme treatment. Her LLMD recommended she see someone. Again, thanks for sharing your story. I wish better days for your entire family soon!

Ok - I know you guys are sighing "enough already" but I found another site with the insect shield line. www.haeleum.com The shirts are nice and have uv protection, wrinkle free, easy care. A few good youth shirts.

the kid mentioned in the article (Greg Davidson) is amazing here he is in an interview http://pandasnetwork.org/2012/02/panschildhelps/ here's a link to a video of his concert (not sure if it will work?) ...he has a great voice! http://www.facebook.com/groups/110603062314494/permalink/329585847082880/#!/photo.php?v=10150684118374612 Awesome kid!!! I'm trying to talk my daughter to participate in a local fashion show to promote awareness for lyme disease (if her current health status holds up - she's doing much better, way less nausea/GI complaints). She's excited, but refused any local coverage (even though it will be covered by our nightly news- lol).

Jen- I wanted to say welcome and thank you for sharing your story! I'm on my way out but will post later this evening.

Fantastic!

They also sell a Tick Removal Kit for $10.00 through the Red Cross, Greenwich Chapter. It includes fine point tweezers with magnifier, gloves, alcohol pads, guaze pads, adhesive strips, labeled zip lock bag, pencil, tick indentification guide and removal information card - all packaged in Red Cross bag with belt loop. I just purchased two (one to keep in the car). www.lymediseaseassociation.org

Does Thieves oil tend to smell more like cinnamon/cloves or rosemary? I'm very sensitive to scents, but I do love the smell of cinnamon. Let me know how your diffuser works out - it seems like soemthing I may be interesting in.

Recommend a portable DVD player for the flight (just in case).

When my dd had c-diff two years ago (b4 I knew about lyme), her symptoms were alot like what S&S described. She was very aggressive and constantly lashed out at me. She would growl at my husband - he was not to speak to her (which is the oppositie of their usual relationship, he's the fun one). She was eight and I was astonished at the strength this little skinny girl had. Since my husband couldn't be in the picture (we tried- it just made things awful and prolonged the amount of time to get through a tantrum), I put up with the worst of it. I remember breaking down crying at night when everyone was finally asleep (which took hours for her), and yet it was my favorite time of the day because I wasn't being verbally abused and lashed out at. She couldn't be at school and the teacher they sent out for 5 hours a week couldn't deal with her. She was in 2nd grade. She also had c-diff twice when she was younger - it was probably the same infection that wasn't treated properly though. Her stools were frequent, long skinny ones. When she was younger she had severe diarehia. When we started lyme treatment in Sept 2010, I really increased her probiotics. In Jan 2011, I ran the OAT test with Great Plains and her clostridia was great. The entire result of the test was good.

Thanks for sharing. Tape alert.

Our last two trips to Dr. B (Sept & Nov) we took the train from Trenton, PA to Stamford CT. You can take a local from NYC to Stamford or Darian. How will you get to/from the office - a taxi? They have a car rental at the Stamford station (not sure about Darian). His Darian office is 5 minutes down the road from the Darian station.

My heart was so heavy after reading your post (and Dawn's) last night, that I actually woke up my daughter to tell her how much I love her. I realize how things can change in a blink of an eye. One thing I want to mention, has there been any recent changes in supplements? You know how some of them are as powerful (if not stronger) than antibiotics. My daughter was taken off abx in Sept. for high liver functions. When we attempted to put her back on zith her body rejected it - a lot of physical symptoms. The second time we tried the zith it made her worse, even after we stopped it. A month later we tried Amox 250mg and she was able to tolerate it but when we tried to increase to 500mg, she crashed (that was after one pill). Her LLMD said NOT to push through the herx and to wait another couple weeks. We started the Amox on Feb 24th. We finally were able to increaswe to 500mg on Tuesday. So far, it's good. Her LLMD said not to push through any herxes with abx or supplements (in my dd's case - she is just too sensitive now). She had no problems with the abx when she was on them before. Regarding the IVIG, again this is our situation, my daughter herxed extremely bad with her first 4 IVIG's when treating for lyme. Thats why at the time I only did them 4 months apart. Her Immunologist recommneded every 8 weeks, but I couldn't do it. We have now moved forward to every eight weeks and no longer experience a severe, severe herx. FWIW

Sending prayers and support your way as well Dawn. So sorry!

Oh, my heart breaks for you right now! You are always so supportive and offer great advice on detox, exc - so I know you are trying everything. I wouldn't be suprised if she is dealing with clostridia. My daughter's symptoms were extremely exagerated when she had c-diff. I am sending you prayers and support.

What is the dosage? My 9yr old (10 now) took zith 250 daily for months.

I would add on Streptococcus Pneumoniae (14 serotype). It may help support an immune deficiency diagnosis.

Sounds delicious. Thanks for sharing.

I know they sell a very nutritious chocolate green smoothie at Whole Fields. You can buy it in individual packets to see if your dd would like it. My dd balked at it, but I need to try it again - maybe add a bananna or something. edit- it's called Chocolate Green Superfood. Comes in berry and orange too.

I agree with LLM and give a call to your LLMD. Some ticks can carry Babesia which would require something other than an antibiotic. So keep an eye for any new symptoms. Sorry.

But far easier to be proactive than to have to fight a yeast or c. diff problem after it's developed. Exactly! My daughter had 3 c-diff infections in the past, and it can be very difficult to treat. Plus, you then have to always be careful on what antibiotics are used. There are some abx my daughter will never be able to take (ex- clindamycin). Your chances of getting a second/third infection increase after having c-diff. Maybe you could add in a Florastor or Culturelle packet, since he is so young. Also like the Jarrow brand for young ones. edit- love the weapon names. good luck!

I don't recall any bands being more specific for co-infections (I could be wrong). I do know that some bands are more borrelia specific, and that band 31 & (34 I think) mean it has probably been 6 mths to a year. I'm glad he is getting help!

Is there a blood test to check Omega 3 to Omega 6 fatty acid ratio?

I've purchased a couple pairs of Bugsaway socks (crew & ankle) at www.exofficio.com for my husband. Also got him a golf shirt, short sleeve and long sleeve tee at www.zorrel.com. The T-shirt was 24.95 and long sleeve was 29.95. There were a few items cheaper. You can find youth apparel at www.insectshield.com. Their t-shirts run 17.95, baseball hat 16.95, sweatshirt 18.00. There's also an insect shield head buff for females with built in insect repellent and uv blockage for 27.00 -they are nice looking - can't remember the site. The insect shield line kills any ticks that come in contact. It may be good for some hiking days.

Walk in the center of trails. Try not to brush up against stalk-like shrubs or leafy palnts, esp. when in shade. Use repellant. Also, maybe check into the insect shield line for socks, shorts, exc. Most important- daily tick checks. The nymphs can be quite small. Also, shower before bedtime (or when returning from the outdoors). Have a great time!!

No depression. I should also mention that her D-Nase spiked to 600 in Sept. and has finally come down to a normal level of 214. Sept to March- Total Cholesterol: 111, 105, 90, 106, all low HDL: 49, 43, 23 (L), 43 (normal is 37-75) Triglycerides: 106, 82, 227 H, 220 H LDL: 41, 47, 22, 25