Iowadawn

Since treating the tick-borne bugs, each time we have had hd IVIG our ds has had bartonella fine "scratch-like" looking rashes show up in abundance on his back--we are pulling it out of somewhere! He takes Biaxin & Rifampin for bartonella now. We just started a protocol of colloidal silver. A day into it several rashes (where these type of rashes have never been spotted) showed up along along the back of his neck. We are pulling it out. As far as drugs, we would be in a world of hurt without them; others may have different experiences. You live with her. You see how she is day in/day out. NO one--not even the docs--have the foggiest clue what goes on in your home. Whatever you do, don't be thinking that somehow you are "giving up" "wimping out" "feel guilty" if you get meds for your dd. HARDLY. It is no panacea. The really important piece is a GOOD psych doc that will listen & be on board with the lyme tx,and change meds if things are not working. It is not a quick fix--nor is any of the other treatment. If a terrible infection developed somewhere in your body & was causing pain or other symptoms, a doc would treat the troublesome symptoms right along side treating the infection. Just a thought. Others may not agree. I will pray that James 1:5 will be real to you. Dawn

Your pattern was our pattern more than once! And now we are treating for the same things. Dawn

This was our boy's experiences with Zoloft & Lexapro. The psych says that we are done trying the SSRI's. Dawn

Wilma- Different is good! Our young psychiatrist says the cases with infectious etiologies are often tough to find the drugs to help. Our son has put our doc to the test!! He says he has treated thousands of kids & our son is one of the top three or so in complexity & difficulty in treating. We would be in a world of hurt without the meds. We have aborted two different SSRI's--made matters worse! May not for your daughter. It really is trial & error. We have been on smeds for sometime & then had to try something else. Geodon is the only drug in its class that has worked well for our son. He even asked to be put back on it when we were adjusting his meds just recently. It really helps with the REM sleep, as a side benefit. He wakes up refreshed. Gabapentin is a good brain calmer-downer for lyme patients. Namenda & Geodon are the two meds in the psych mix right now. Not too long ago it was gabapentin. We have aborted (meaning we didn't stay on long at all b/c they were not working, or were making matters worse) WAY more drugs than we have stayed on for any length of time. Namenda is quite often effective for autistic traits. rigidity/inflexibility/OCD/focus. I don't know if this helps at all, but PM me if you have questions. Boy, that shower thing is a biggie, isn't it! Same experience here! Dawn

I think I have the spelling right here: Agyria. Yes, blue & permanent. The company has section where they address this concern and mention the difference between The silver nitrate of the 20's (and the high doses) of before & the colloidal/nano particle silver of today. The number of "blue" cases with all the silver that was given is incredibly few. But, uneducated docs of today would probably still not know the difference and try to scare the begeebers out of you. Dawn

The silver nitrate used in the 20's is not the same stuff as colloidal silver of today. Pandas16-have you heard something specific about this product? He didn't get rid of the headache til next morning. Bartonella rashes became visible the second day on the back of his neck where he has never had them before. Grouchier than earlier in the week. Still doesn't seem to be as spunky. I can't find anything written on the spray protocol for bartonella, but our LLMD says they are finding it is very effective in the tough bartonella cases--maybe something presented at recent conferences these docs attend. Dawn

Melanie- After reading the article posted by PhillyPA, this looks rather significant. When the result is that far above normal range. The IVIG is one of the treatments the doc in the article used. VERY interesting. I hope this is an important & beneficial find for you. Could the GAD autoantibody be causing thyroid problems like it can with the pancreas? Dawn

Ds12 just added ACS200 intra-oral silver colloid spray protocol for bartonella per LLMD visit yesterday. You slowly ramp up the number of sprays. Going "Hmmm...?" as he woke up with a headache that hasn't gone away with ibuprofen and a self-imposed nap. Not as spunky today, either. Anyway, anyone with experience with this protocol? It's suppose to be very efficacious with bartonella. I'll keep you posted. Dawn

The same thing is true of our middle child--both CDC/IGenex poositive no real PANDAS symptoms, in fact she was the only one in the family with normal titers (strep) when the rest of the family's were through the roof. She has always been my "here an ache, there an ache, everywhere at sometime an ache" kid. SHe has finally been convinced that "hmmmm, if I take my medicine I feel better"---wayyyyyyless moody & volatile. It took a couple of starts & stops to help her (14+) see the connection. We are still trying to figure out my oldest with the strep. Dawn

Please keep us posted!!

Great Dawn! I'll have to check it out to see if it's cheaper than what I'm paying. I purchase Florastor for Kids at my Rite Aid and use the savings card to get a percentage off. I purchase the bigger box. I also sometimes use the adult version and open up a capsule and add to dd's food...cheaper that way. But I kind of remember reading an Dr. Kl article where he mentioned he prefers the kids version over the adult brand. We get free shipping. We use it so much we just have it auto-shipped & that saves more and then get get $$$ with every so much you spend. Comes out to be about $32 for a glass bottle of 50. ( WHich gets me--30 days x 2 a day=60. Guess everyone knows how to make a buck!) Is there an even bigger bottle?? dawn

I am convinced that FLORASTOR is a bit different than the other sach b. There is this little word "lyo" (short for some process) after the Florastor version. I think this is significant, but I doubt another brand wouldn't help. Drugstore.com By far the cheapest & free shipping. With all the flux that occurs in our lives--we have just stuck with one thing that has consistently worked. Dawn

You HAVE to get a good probiotic. I think most, if not all, here that have been on abx for any length of time will tell you that probiotics are a MUST. Yogurt is good, but the amount of good bacteria in even the best yogurt is a teen-weeny amount. FLORASTOR has been our friend. It is a good yeast---it will guard against bad yeast setting up shop. We also use a good bacteria based probiotic. One with about 40 BILLION good bacteria and will survive stomach acid. Our son (and others of us at times) has been on multiple abx for 2 1/2 years and he has had VERY few instances of even goopy poop. You can pick it up now at the "national" Big Box store to get started--but get it online for a much better deal. PM me and I will tell you where we get it. Free shipping. Maybe stop the abx until you can get your child loaded up on some good probiotics and then start again. I would hate for you to unnecessarily give up on the abx when all you need is probiotics. I am sure others will chime in with their favorites. But we LOVE Florastor. Dawn

We have tried 2 different SSRI's about 2 1/2 yrs apart and they were a total failure--a disaster. After a short while they started doing just the opposite of what we were trying to help. Disinhibition, out of control behavior. Nasty. Doc says he can not be on these now. Dawn

Oh yeah, knife wielding is fun, too! NOT. SF Mom--Evan has a hx of at least 3/4 of the problems (more than just a little problem or fleeting issue) on the list you posted. Dawn

Yes, Yes, Yes. Have had hammers thrown at us. Objects become weapons. I've been called some pretty nasty stuff. He has tried jumping out windows & cars. I don't have an interior door in my home that isn't trashed. We ended up in the court system when a rage sent him flying out of the house in his sock feet and then he throw a rock & broke someone's car window. Ds12 has been in the hospital so many times I quit counting--even spent some time in a detention center when the hospital was full and the JCO had it in for him. He is in the hospital right now. Med change up. All this from a boy who made us a card for our anniversary, gives us hugs to give to his sisters (both while he is in the hospital), and insists we visit a 94 yo dear aunt in the nursing home! I said when he was 4: When he is good he is very, very good. When he is bad he is horrid!! We started lyme treatment and all blankity blankity broke out. It got bad. Sorry to hear the struggles. I understand the pain. Dawn

In this day when you sneeze and the next morning the whole world knows the color of Kleenex you used to wipe your nose, I am figuring that the Des Moines Register (THE paper in Iowa) will have wind of it by next week. They just did a front page story about the increase in Lyme disease in Iowa. Oh, wouldn't this make for a juicy follow-up story! NOT. Dawn Please tell me the Tribune & Times is NOT owned by Gannett.

This story first appeared in the Chicago tribune. I am told this writer is/ was a tabloid writer. We will be in a world of hurt here if we lose him if things go south for him because of the bad press. Dawn

Thanks for being part of the study. The headache & nausea--for our boy it was like the flu-flu--pretty common. When we were treating the PANDAS with IVIG it was like rapid cycling of symptoms--you name it. Two to 3 weeks of bleck and then positive trending. BUT, his wasn't sudden onset and then we went on to discover tick-borne infections. Like someone else said, each person is unique. I think you'll know if you got the real deal--if you didn't, you will be allowed to get it at 6 weeks? I forget. They are allowing psych meds during the study? Just curious. Best wishes. Dawn

Hello all! If you have been to see Dr. Bransfield, could you pm me about your experience. Whatever you could include would be helpful. Our boy is back in the hospital again. We have a great young psychiatrist who is on board with us--wish we weren't half-way across the US from Dr. B. Our son has been a case! Thanks! Dawn

There has been some posts re Namenda. You'll note that Bransfield mentions the increase in NMDA receptors. Namenda works on this. Just a note. DAwn

From what I have read he is THE lyme psychiatrist. He often is called upon and presents at conferences. I can't wait to hear what you learn. I have considered giving his name to our psychiatrist in case he would want to consult with him. My impressions are that he is a wonderful physician. Dawn

Dr. B out east?

Our kiddie psych will treat the symptoms the infections/treatments cause and the LLMD treats the TBI. They are on board with each other. We have prn medicine now when the agitation can not be managed.(Zyprexa Zydis) This has been a lifesaver. Evan is just too darn big & strong. Gabapentin is not an unusual drug to see used in lyme patients. Namenda has been a good addition to help with the rigid/inflexible/stuck thinking (autistic traits). He takes these daily. We have had a very good relationship with our psychiatrist--would be in a world of hurt without him. Some people on the forum have had yucky results/experience with psychiatrists; some of us wouldn't know where we would be w/o ours. It's about like everything else. Dawn