Please help for Bartonella and other

[Jaysmom]

Hello from Greece! My ds18 is diagnosed at 12 with PANDAS and 3 weeks ago diagnosed through Igenex with Bartonella! My son sudden onset was at 3 years old! Unfortunately the doctors here didn't know something then ( not even now) and my son was without correct treatment until the age of 12.Then dr. K diagnosed him with PANDAS and started Augmentin and some IVIG .In the begging of the treatment was better but after one year that stopped working .The major issues for my son always was OCD ,regression age ,dysgraphia,difficulties in social skills,sound sensitivity ,toe waking ,ADHD.

2 years ago the health of my son was much worsening with extreme sound sentivity with ear pain that caused to him psychotic issues like agression,rages ,panick attacks . we went to US and checked him twice for Bartonella and others with dr T but where negatives .

All these years we made many lab test that except high strep they didn't shows something else.

Was like he was a healthy child but he didn't was! Last winter was in .... He take steroids long term he gain many kilos but the phsych issues remain! So I decided that he made PEX to find some relief ( I heard about that in the last seminar in Italy from dr L)

I forgot to tell you that last winter my son was full of stretch marks in his body but I thought that was from the weight.But after the PEX the stretch marks disapeard and also the psych issues with the sound sensitivity ( but OCD and others still remain) Then we come to US and see dr B that says when he show my son " this is from tick bite! this is the initial trigger for PANDAS and the autism like symptoms!!"

3 weeks ago we took the Igenex results and he is positive for Bartonella !

Dr B.suggest combo of 3 abx ( Azithromycin,doxycycline ,Bactrim) but sooooo difficult to take.

From the smaller dose make him with old symptoms ( die- off)and I m afraid to proceed ( because of rages )

I try very hard to detox ( Epsom baths,Curcumin, baking soda ,charcoal,ibuprofen....) I need your help please. I ordered already the neutramedix stuff he is also in GFCF diet.

Maybe I must have another dr also to help me with detox or another problems ? My son is with problems all his life I want so much to help him now that I found something

Thanks in advance for your help and sorry for my English!!

PS. I would like also the opinion of rowingmom.She is a guru as many others moms.

[searching_for_help]

^{My dd had a similar situation. She had symptoms of PANS for a long time, but no one knew what it was. Dr. K diagnosed her, we went through IVIG (didn't help), lots of abx, etc. Strange thing, about a month or 2 after plasma exchange and a round of IV rocephin for suspected Lyme, she broke out in a Bartonella rash. They looked like purplish-red scratches or streaks on her arms, legs and torso. I had been to the doctor with cat scratch fever right before I got pregnant with her, and have always wondered if she could have been born with it. But how odd that we didn't see a rash until she was 22 years old! Most of the docs that saw her rash had no idea what it was, but when I told them it was probably bartonella, they looked it up and agreed.}

 

^{Although she hasn't been getting the rash lately, her mood is still unstable. She has an eating disorder, anxiety, obsessive, can't handle any change, etc. But she is much better than she was 6 months ago - when she was horribly depressed, suicidal, extreme anxiety, couldn't eat at all, etc. It was beyond a nightmare. Still no picnic, but more manageable now.}

 

^{I hope someone will get on here and answer some of your questions. We aren't sure what started bringing dd out of her worst place, as she had had several things going on in a short period of time. (Plasma exchange, then IV rocephin, then they started her on Anafranil/Clomipramine in the ED center.) I keep her on A Bart drops, but I really don't know if they are helping or not.}

[nicklemama]

I've been on the same journey. IVIG with Dr. K. Only temporary relief. My son has Lyme and bartonella. We just started treating bartonella after two years of Lyme treatment. My best advice is to start put slowly. Dont give all the antibiotics at once when you start. Start one and dose it once a day for a week, then add the second dose for a week and work up until you can give the full dose, then add the next antibiotic in the same slow way. I use burbur as a detox. His doctor recently added activated charcoal and MediClay to be given once a day, between lunch and dinner on an empty stomach. I'm waiting for my order to arrive. My son has never had a bad herx from starting out slowly. We are upping his detox as we are seeing him start having tics from the bartonella treatment.

 

I also have Lyme. I have a different doctor than my son but my doc also does the slow building of antibiotics to avoid a bad herx.

[Jaysmom]

Thank you for your replays.nicklemama the way that I give the abx is as you say and very slow .But after 3 days of low dose of 1 abx he start herx,and herx for us is severe sound intolerance that make him with rage and of course increase of OCD

Until now I detox with charcoal,Epsom salts. Baking soda ,and lot of lemon water.also I give ibuprofen .Today I received Enhansa and I wait burbur detox and Pinella

What dose of Burbur detox do you give?something else for detox and support the use of abx?

[Eloine]

Can you tell me what ABX your son took for Lyme and how the additional Bart ABX plan is different, please?? I am just learning about this as my son was just found to be + for Bart. I am wondering about other co-infections and hope our current ABX might cover others JIC:) He started on Azithromycin and Bactrim 4.25 weeks ago. Unfortunately, I did not know I should go slowly and we just started with both right away. So far, tics (hopefully they are related to the Bart as I have been on a 3 year search for etiology) have been slightly up for a couple days, then slightly down for a couple days. He has had a plateau of moderate tics(at least on our continuum) for about 6 days now and I am hoping things get MUCH better in the next week before school starts...praying!!! We are doing major probiotics, Epsom salts, lemon water. Haven't added anything else for detox and open to suggestions!! I know from his SNP mutations that detox is likely challenging:( I am rambling, but looking for feedback on what courses of treatment, supplementation, and symptoms have been experienced. TIA!!!

[Jaysmom]

Hello Eloine,my son has only Bartonella no Lyme.the abx that dr suggest is Azithromycin,doxycycline and Bactrim

Unfortunately I can't proceed with the treatment because the die off is more than I can detox.So know I try to detox first to make more clean the body and after I ll go with abx.Something more for detox is burbur and Pinella .is only 3 days that we use that but it seems that are good enough.