First post...13 year old daughter dx w/ chronic lyme and many co-infections

She was diagnosed with lyme in April after being completely bed-ridden and non-fuctioning for months.  She had been diagnosed with eosiniophilic disease at age 10 and got better with a diet change...always had days of fatigue after soccer, etc but was high functioning.  She has  been on oral antibiotics since April...She is on Septra, omnicef, minocycline, and flagyl...The flagyl pulses in at the end of a second week series.  All the meds are pulsed....After this series, she changes antibiotics and adds Azithromyicin and Ceftin and keeps minocycline and flagyl at second week.  She also takes a lot of supplements with her pills...She has begun to show improvement but still backslides often...She was sick last few days, but is not on the bed all day.   Her biggest issue at the moment is how much weight/fluid she gained the first 6weeks on the antibiotics while herxing.  She went up 20  lbs while laying in bed most days...Anyone with ideas to get this fluid off...Dr tried a compound to bind toxins in her body, baths, dandelion root, etc.  She is more active now, and still keeping the fluid.  Ideas???  It is causing her to withdraw socially again, even on her good days.  She was very depressed during her major detox/sickness and previous to her dx.

Thanks...I live in Austin, and my doctor is in Virginia. Not sure about the training, but he seems to be very well versed and other lyme px seem to be comfortbable w my treatment thus far. Not sure about PANDAS either. He ran so many tests on her...I will check that too. I am fairly new to all of this and have learned a lot but still a long way to go in my education.
Being a 13 year old child she is very willful and grumpy. I try to do the detox stuff as much as possible. She is using a compound rx now to help bind toxins...We did meriva, and dandelion root. The inflammation is all over her body and so far not much helping. He thinks it will go out in time, but is just part of the process, although he has tried to help.

texaslyme - I am so sorry to hear about your daughter, but the abx treatment you are using sounds like the one that got us to the point where we could continue on herbals alone.

Are you treating only lyme, or dealing with other coinfections as well?

Our daughter never dealt with the overall body inflammation you seem to be dealing with, but we also started out on a weaker protocol (biaxin/rifampin only for the first 6 months for bartonella), and so may have had lower amounts of die-off. Our daughter's was mostly brain inflammation, which caused most of her PANS symptoms.

Stephen Buhner recommends Japanese knotweed for inflammation. The organic powder can be purchased from 1stChineseHerbs for $25 per lb which lasts approx. 8 months (at a dosage of 1/4 tsp made into tea, 3x daily), or as a tincture from WoodLandEssence for $40 for 4oz which lasts 1 month (at a dosage of 1/4 tsp 3x daily). We are also using meriva or turmeric tincture (1/4 tsp) 3x daily.

Lymph backup can be a problem, especially when babesia is involved and Buhner recommends red root for this. His associate Julie McIntyre started us on red root recently and our daughter is now taking 5 drops 3x daily.

If you are interested in the herbal route (Buhner says herbals can be used along with abx treatment, and we did use Japanese knotweed and sida acuta - a broadspectrum antimicrobial, along with abx), Buhner's books:

Herbal Antibiotics, 2nd Edition: Natural Alternatives for Treating Drug-resistant Bacteria

and

Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma

are a must read. A huge amount of information on the life cycle of the bacteria, how they effect our bodies, and how herbs can be used to alleviate symptoms caused by specific cytokine cascades while also being antimicrobial. Sources of herbs are listed as well as a compendium on how to make your own tinctures, decoctions, teas, soups, glycerites or anything else having to do with herbs.

His associate Julie McIntyre is available for consult:

http://www.gaianstudies.org/herbal_consult.html

We have had excellent results after 1 year of using a mixture of his bartonella and babesia protocols, and remain on them at low (1/4 recommended) dosages.

Hello texaslyme,

I am sorry to hear about your daughter. It is terrible as a parent to see our children in pain. The good news is that I keep hearing children heal faster vs. adults. I was just diagnosed with Lyme a bit ago. It can be very overwhelming. Connecting with others like me has helped me immensely. Maybe you can find a connection for your daughter? (Other children with Lyme) I think my daughter would enjoy emailing with someone with Lyme.

Can you please email me with your Pediatric Dr.'s name? I have one for my children (Pretty sure they have Lyme) but I am not too comfortable with her. And I happen to be in VA. Thank You!

And welcome!!