philamom

Sending many prayers!

Yes - dd was cultured during a winter month. It helps in that argument.

We are going next month. If you are considering it, I also recommend reserving a spot soon. Especially if you need it to be done during the summer. We are fortunate to have a friend that just offered us his summer condo (and car) in St Pete for a month. My husband is coming with us and working out of his house. I plan to use weekend trips as a reward (beach, bush gardens, winter the dolphin) for my daughter's participation in the therapy. We are adding a few days in Orlando at the end of the stay as well. I'm nervous though!

I guess my daughter would be a good example of how symptoms after lyme treatment are not due to "post Lyme syndrome" (non infectious symptoms) as Steere claims, but treatment failure- infection still present. My daughter cultured positive after treatment with Advanced Lab, proving she still has lyme. I was given a photo of the spirochetes cultured from her blood sample.

Two of the most species specific Bb bands are 31 & 34. One of the reason the CDC testing is flawed is because they omit the two bands. And, any antibodies shown in IgG were once IgM. I have to agree with mama2alex regarding his need to be very careful in treating. He's receiving many PANS patients daily- and now extremely under-staffed. Still, no excuse for the response you received. I like the idea of sending a fax addressed to Dr. J. I would request a copy of all labs drawn (Igenex, Quest, etc) as well. Also, he does phone consults on Sundays for established patients. edit to add: J. Burras suggests running the epitope test, if only band 31 is present. So may be something to consider (unfortunately - additional cost) calling Igenex about.

Every 8-12 weeks. When my daughter was having a lot of "out of range" labs, there were drawing them monthly.

Sinus infection? And yes, it certainly can be from banging his head.

You could also send her clothing for horse camp to be treated with permethrin at insectshield.com "do your own clothes". It may cost a little more, but it will last 70 washings, so no need to reapply. I've sent out some of my husband's golf clothes. just an fyi Also, I just had my property treated with cedar oil (natural treatment) and added some daminik tick tubes in rodent habitat.

Its been a while since I signed up with the code, but I'll look through my file and see if I can find it. Someone here was kind enough to pass it along to me. You may be able to call Pro Thera directly and inquire. And yes, it is very expensive. I purchase 2 or 3 at a time to receive free shipping, but you still have to pay a fee to keep it cold with an ice pack. Once you receive it, you need to refrigerate. also- I suggest adding probiotics in slowly to avoid bloating. One daily or every other day before increasing, if desired.

We also use florastor for kids, culturelle kids chewable, and integrative probiotic pearls daily.

Thx :-)

LLM- I've been unsuccessfully trying to locate a post where you gave me some info on Psyllium. Hopefully, you don't mind me bugging you again. What is the brand and dosage of Psyllium Husk capsules you give your children? Also- how about the garlic capsules. TIA

Hi Kerry. I like klaire ther-biotic detox support at 50+billion cfu's per capsule. I hope you see more improvement with the rifamphin! Melinda

Sending prayers to you and your family. Robert Mozayeni knows a lot about Bartonella. He is Chief Medical Officer at Galaxy. He also has a private practice in Bethesda and someplace else I think. I wonder if he would respond to an email.

Here are some notes from Burrascano: Bartonella-Like Organisms -Galaxy Diagnostics uses culture-enhanced PCR and they claim higher sensitivity for Lyme-associated Bartonella. -More prevalent in Northeastern ticks than even Borrelia! -Clinically, seems to be a different species than "cat scratch disease" -CSD Tests are insensitive (serologies and PCR). Miss up to 80% of clinically defined cases. Clinical Picture: -CNS symptoms out of proportion to physical. -Encephalopathy- encephalitis, irritability, anxiety, seizures, psychiatric syndromes, insomnia, gastritis, rashes, tender skin nodules, sore soles, am fevers, light night sweats. -Persistent CNS symptoms despite Lyme Rx. Thinking of you tpotter!

I run the Igenex Western Blot on my daughter every 8-12 weeks and she is on antibiotics. Its true that borrelia can go into cyst form while on abx, hindering results. But my daughter has tested positive many times with Igenex western blot over the past three years (before and after our positive Advanced Lab culture). We pay $60 for the Igenex WB igm/igg after reimbursement.

Motherof2, Sorry, didn't see your post before. Lyme is always a clinical diagnosis. Positive lab tests may support a diagnosis, but negative results can never exclude Lyme. Igenex Western Blot is the best lab for serologic testing. Significant bands are 23-25, 31, 34, 39, 83-93. CDC criteria (Quest/Labcorp, etc) for western blot interpretation is highly flawed and insensitive and should not be used as an aid in diagnosis. Advanced Lab culture directly detects living Bb. If positive, then there is an active infection with borrelia the time the specimen was taken. It's expensive ($595) and you must be off all antibiotics for at least four- six weeks. I received reimbursement for Igenex (depends on your insurance) but not Advanced Lab. And, then there is the tick-borne co-infections...

I've been taking Verapamil (Calcium Channel Blocker) for 25+ years for Raynauds Disease. Diagnosed in my early 20's. I stop the med June- August since the weather is warmer.

First, congrats on the birth of your son!! Enjoy him and all the precious moments that come with that age (awwww). I would not worry as much. Knowledge is the best thing - and if you ever see symptoms you can quickly take action. If you really want to do something, you could call Advanced labs about their new lyme culture and inquire if it can be done on a newborn. It's a blood sample, so I don't see why not. Expensive though - $595. Enjoy him!!! Try to put the what if's aside (easier said than done- I know).

Back in 2009, after my dd 1st IVIG, she was put on Amox & Clav Potassium liquid brand name. When her RX was finished she was switched to generic and I noticed a huge backslide. Spoke with the pharmacist and was told in no way would it matter but that he would switch her back to brand name. Then, with the next refill it was changed to generic again, and I saw the backslide. I had to call the doctor at the time (Chicago) and ask him for a new RX with "brand name only" written on it. I wonder.... I will be checking all my prescriptions on that list to see if any are from the company. Thanks. Scary.

Sorry for all the questions - just trying to organize the trip. Is there homework on the weekends? thx again

Yay!!!

Can someone tell me the next size up empty capsule from "O". Is it "OO" or "1"? Its so hard to tell from the pictures when ordering online? thx

For the families- did your husband go with you? did he just come for the first few and last few days? thx

We use the patient savings card and pay 25 month. I was told by our LLMD to be certain not to get the generic brand. He wrote that on the RX. I purchased some empty veg capsule shells (size 0) at Whole foods, but I need to find a larger size. Question- do these veg capsules dissolve immediately, as I know its important the doryx be taken while eating food.