Iowadawn

The date I see is Dec. 5. The website has an ad for an event in 2011, so I would assume it isn't that old? or old at all? I couldn't stand to read the whole article. All I could do is scan it!! "It's a conspiracy, man!!" I better not get going!! Dawn

I vote: Note normal. Dawn

Doxy 100mg bid. OK, now he tells me tonight as I am tucking him in: "Why do I have to have a headache everyday?" Ugh...Not sure how long this has really been going on, but I know that can go with lyme. I gave him motrin this a.m.--he said it didn't really help. I can see how the symptoms are cycling in & out now. Having the 3 B's makes for non-stop symptoms. That has been what has made him a tough cookie all the way along from the time he was knee-high to a grasshopper! dawn

Too weird. Days 38 & 39 here, too! We do take it with food. And not before bed. His appetite is not what it use to be. That is one complaint he has. yes, to the probiotics-both types. Dawn

Just curious about morning nausea & a one time vomiting thing going on w/ my ds. 6 weeks into lyme treatment on zith/doxy/mepron. This nausea thing is new. Last two days he has just plain been down in the morning & then perked up. I could do w/o the vomiting. Ideas/thoughts Dawn

Susan- The two years we have treated PANDAS with abx & hd IVIG we unknowingly have been treating the lyme, etc.--just halfway, per the LLMd. Many of the mvt issues of PANDAS are gone. We are aggressively treating the tick-borne infections, now. Dawn

I've got those spots--more than six of them! My boy was pos. for Babesia, so that is what this is, I guess. My heels have been really hurting the last couple months. Creek-y neck, too. Neither of us has had the night sweat problem, though. Dawn

Our lyme doc just had me run the IGeneX WB IgG & IgM panels. That was $200. Enough savings to buy another (BIG) bottle of wine for Wendy & a case of Diet Coke for me! Dawn

If I am reading the results correctly, I think there is enough there that warrants you looking for an LLMD. Contact ILADS if you aren't aware of one. There is such a thing as lyme induced autism. Don't know if this in anyway applies. We have a PANDAS son that just recently was found to be positive for Lyme, Babesia & bartonella. Never would have thunk! I am positive & will soon test the rest of the family. Best wishes & prayers. The ODD garbage is the hardest. It just defies parenting skills! Dawn

I just got a reply back from our LLMD re our son's ordere dosage of IVIG. He said the reason he ordered low was that in his experience it is easier to get insurance approval & then increase dose. The other reason he starts low is to prevent reactions. Our kid is unique. He has had 2 HD IVIG's. I think many of the uniquely PANDAS symptoms are gone. We'll give these IVIG's a whirl now with lyme. He also responded that he hasn't had issues with the timing of IVIG, often using it for autism induced lyme. Dawn

The LLMD we are seeing has treated Lyme induced autism with IVIG. I asked him about IVIG timing & he hadn't had problems like what you explained. Still waiting for approval!! Dawn

Boy, Nancy. Incredible. You know, I think I would tip Dr. Cunningham about this. Certainly she could wave the $400 fee for a test. This would be earth-shaking, I think anyway. At least get her thoughts. Just my two cents. Dawn

Prayers from Iowa for Chris & your family. Blessings, Dawn

Sorry you had to find this forum---But glad you did! You hit the gold mine to have a sister-in-law for your ped!!! What so many of the parents on the forum would give for this. Educate your sister-in-law. And keep the abx coming. I will say my PANDAS son was dx lyme recently, along with babesia. I mention this because he had this "It feels like I can't get a good breath" "Like something's on my chest" "Like I am breathing thru a straw", often accompanied with a minor dry cough. Babesia can cause what's called "air hunger". Just tossing that out there. Not even saying the breathing symptom is the same. Best wishes & prayers. Dawn

OK--I accidentally put this on the PANDAS forum. How do you move it to Lyme? Since my boy is PANDAS, too, I still would appreciate comments. Dawn

All my lyme & PANDAS moms! ANy experience out there with gabapentin? Our son was just taken off all his psych meds and going to be put on gabapentin. We have been having a heck of a time. He is in the hospital right now (AGAIN--really STILL). The psych is looking into getting IVIG for him. (This is a first for the doc! Hope it changes the way PANDAS is treated in Iowa). He has consulted w/ our lyme doc and is working with the rheumy dept at the hospital to pull it off. Say a prayer. Evan could be-what I would guess- the first hd IVIG done in Iowa for treatment of these problems. Take this, mr. Infectious Disease Doc across town! What I have heard about this drug has been good. Just wondering about your experience. It is a mild anti-seizure drug and is often used for nerve pain. Settles down the brain what I have been told. Dawn

Psychiatrists COULD rx abx, if they would. See this whole "microbes & mental health" starts to poke of holes in the psych drug world. In my opinion, this knowledge is nothing new, but BIG Pharma is working overtime to squelch the info. It has to be getting harder & harder. Opinion Dawn

Frankly--I think I have had this all or most of my life. The condition my mom is in has me wondering if she doesn't have lyme. SHe has bad fibromyalgia, her knees have been replaced and were the worst looking things the doc had seen along w/ her ankles, her eyes are a mess--she just had a tearduct removed & replaced, along with a nasty lacrimal sac. She has had nasty irritable bowel stuff--she's 74, but seems much older. Her moodiness is getting more yucky at times. I was sick so much of the time as a child. I came out of the shoot screaming and all accounts from family members are that all I did was scream as a baby. I was anemic very early on and had eczema. I doubt I will ever get my mom tested for lyme--she says she would never be able to tolerate the abx if she was positive. I have my hands overflowing w/ trying to get our family well. I wouldn't be surprised if I have had this forever. Evan has had it out of the shoot, and I would lay money down that my oldest has it, and I would put a little down that my middle one has it, too. I don't know how longevity of infection bodes for treatment success. Dawn

I asked our llmd abut detox--his recommendation was Pekana detox for kidney, lymph, & liver system. Any used this? I have googled it. About all I know. Dawn

Wendy- Here are my WB results: Western Blot IgM: POSITIVE: Band 23 (IND), 31 (++), 39 (IND), 41 (+) > Western Blot IgG: POSITIVE: Band 31 (++), 34 (IND), 41 (++) > About the same, I would say. Dawn IgM vs IgG?? Too lazy to look right now.

If I didn't have to pop for the 400 smolies I would do it. If Dr. C would want this info I would get it done in a heartbeat. Dawn I do know that the LLMD we are seeing in IA is involved with some lyme study with Dr. C.

I am wondering if having been on so much abx helped draw out the Bb so our WB were more positive. I had some double positives and a couple IND on lyme specific bands, along with the band 41. SF-Did you have problems with herxing?? My fear is that I need to be on top of things when Evan is like this or worse. Dawn

Phasmid- I think you can have just about any symptom. But the stabbing pain is common. I have started having creaking/rice krispie sounding neck the last 6=8 months I was sick, sick, sick as a kid The last couple weeks I have been itchy-hands, feet & back. I wonder if my menstrual issues are related since when I have been on extended abx I don't have quite the periods from ######. I do have psoriasis Our family had/has the strep issues My heels and feet have been going through a phase of aching/hurting I don't know if this is related-I had a vitreous detachment (sudden--it normally happens over time as you age) 4 years ago. lots of floaters. Some still present. On this same side, I have noticed my one eyelid has gotten a bit droopy. Now--wish I could say my inability to lose weight could be somehow tied to EXERCISE! I now am thinking that the HELLP Syndrome I experienced that precipitated my son's need to be delivered early may somehow be related to this. I was sooo yucky for the longest time after his birth. I barely kept going. Then I think a good post partum depression set in and I tanked. The mood thing can be an issue with me, too. Right now I don't have any really bothersome symptoms, though. All for now. Dawn

Western blots back for lyme. Both igs were quite positive. Double positives on several bands. On an itouch. More later. Dawn

Thankfully, Mepron is on our insurance formulary--a tier 3 drug, but I can take $35 a month vs $1350! Dawn