cobbiemommy

Thank you, thank you, thank you! We are starting year two of treatment, but in our eighth year of dealing with this mess. We do have an IEP, documentation from his doctor supporting us, and the teachers and administrators at the middle school seem very supportive. I think I need to find a new counselor, one who deals with CBT or ERP. Thanks for the support. It means the world to me. Cobbie

My son is experiencing the same thing, the rage and anger. If you look at him wrong, he snaps your head off. LLMD will be calling me in the morning to discuss what to do next. He is drinking tons of water, but we had gotten away from the epsom salts baths, so that will become a daily thing again. Lot of good ideas, here!

Ds, 12, is hating school. He just started middle school where they change classes each hour. His teacher called me, luckily she is someone I have known for a long time. He is not doing his work, not bringing his work home, he is rude to people and does the circular arguing that goes nowhere. UGH!!!!!!!!!!!! He is taking Rifampin for Bartonella and Bactrim for Babesia. We are almost through our first month of Bactrim after finishing a month of Tindamax. He is begging me to homeschool him. I am a certified teacher, but have no desire to teach my son. He knows how to push all of my buttons, plus then he would have no social interaction with his peers. Although, if he is going to be so negative, what would he miss, really???? Can't get ahold of the doctors office for another ten minutes, so I guess I am venting here! I wonder if it is the Bactrim that is doing this. He seems fine when he is not in school, but then he is usually only dealing with me or his dad. I want to beg the doctor for IVIg, but it probably would not get approved by the insurance, so what's the point???!!! Frustration does not begin to cover my feelings at this point. Please, someone help me look objectively at my options. Cobbie

Thank you for all the replies. I have started breaking the Zoloft capsules in half and will try weaning them off of them. We also tried Neuro Lift (l-tyrosine) in the morning and L-tryptophan in the morning and evening. I won't say it was 100 percent, but he said that he was not tired yesterday during school. That is a plus! He did lab test positive for the Bart, Babesia, Lyme and RMSF. He also tested positive for HHV6 and Epstein Barr. DCMom, when you say immune modulating treatments, what do you mean? Ivig? Antibiotics? Going to go have my cry today, take a nap, and then start the day over again!

I was thinking the same thing that Mama2alex said, "Inflammation". My son's best days were right after a steroid burst and right after IVIg, before we knew it was Lyme. Both things help with inflammation. I guess the one take away is that if it happened once that he had such a good day, then it can happen again. I tell myself that a lot!

DD, 15, was diagnosed with Bartonella on Wednesday. This is based off a rash and clinical findings. We are still waiting for the bloodwork results to come back. She has been horrible to deal with! She is very busy with school, band, FFA, and softball, but has become so very negative and argumentative! This is more than typical teenage angst. DS, 12, whom I thought was doing so much better is an anxiety laden mess since school started again. He begs me everyday not to go. He always used to sleep well, now he wakes up in the middle of the night for two hours or more. He is on a pretty hefty dose of Zoloft that is obviously not working. Doctor recommends experimenting with Tryptophan and Tyrosine until I get a dose that works for him. Don't you love that wording "Experiment"? I feel we took two steps back with our son, and I am devastated about our daughter. She was my "normal" one and my rock. I would like to go lay down and bawl, but there isn't time for that! Thanks for letting me vent. With a heavy heart, Cobbie

This may not help but to let you know that others have been where you are now. DS, 12, was literally bouncing off his seat the first week that he took Bactrim and then again on Tindamax. Not sure why I stuck it out other than it was summer and we were at home, so why not? He came through those weeks and then really made some gains that he has maintained. We did not have the staring at the ceiling, so I cannot speak to what to do about that. What does your doctor say? Cobbie

I liked the Lyme Disease Solution by Kenneth Singleton, M.D. Concise and easy to read with a good index.

Wilma, We started down this path thinking our son had Pandas and this was a strep related thing. We had tried gf/cf diet, allergy shots, supplements, Risperdal, Prozac, and eventually IVIg before we had a true Lyme diagnosis. We had been on Zithromax for a while and it was helping take the edge off of son's erratic and OCD behavior. We thought that is because we were dealing with strep--actually the Zith had been working on the Lyme. After IVIg, we had six wonderful, glorious weeks before we were pretty much right back where we started but without the Zithromax prescription. Once we had the Lyme diagnosis and the antibiotics, our son got better early on then worse once we switched doctors who also switched the antibiotics. Now we are back with doctor #1, son is on Rifampin and Bactrim and we are doing much much better. (I say "we" because everyone in the household suffers or benefits from son's condition.) Also, we had to look at the other complicating factors: mold and allergies. He is doing SLIT therapy for allergies and we had to reconfigure our roofline and totally repair/replace one room in our home. The right antibiotics will bring down OCD behavior, but it is finding that right antibiotic that is difficult. Bartonella is especially hard to eradicate and the one that gives our kiddos the most trouble. We have been at this for a year(our anniversary for Lyme diagnosis is this week.) and I could not have made it this far without the people on this board. You will come through this and so will your daughter. Cobbie

We are taking Cholestyramine to remove the mold and Lyme toxins from my son. That stuff is gritty. The only way he will take it is mixed in with applesauce, but even that is getting old. Is there a trick I'm missing to dissolve the powder. Recipes, anyone? Cobbie

DS, 12, is responding very well to Rifampin and Bactrim in treating Bartonella. He just finished a course of Tindamax that could have jarred something loose. How do any of you handle foot pain. He just started school and is going 5.5 hours and his feet are killing him. I notice he is walking kind of funny at the end of the school day. Next week we go to full 8 hour days, so any help would be appreciated. Cobbie

We just added Rifampin back into son's treatment about three days ago, after being off it for 6 weeks. He is taking Bactrim DS twice a day, Tindamax three times a day and now Rifampin and Cholestyramine each day. He is sort of coming unglued as well. He is so crabby, irritable and tired. We also started slit therapy for allergies nine days ago and cholestyramine for mold and lyme toxins. Sometimes, I think God puts these posts at the top for me to read. This is the first one I came to and the one that directly relates to what we are going through at the moment. Thank you for sharing your struggles and successes just when I needed it most! Cobbie

DD, 15, and very healthy and active (plays three sports, marching band, etc) has just started having a one inch long rash next to her bellybutton. To others, it probably looks like a stretch mark, but to me after seeing her brother's Bart rash, it looks like Bart. The clincher is that we put Clindagel on it (clindamyacin antibiotic prescribed for brother) and it started to fade in the same day. Also, she started to get patches on her shoulders and upper arms that look like Vitiligo-where the skin is white while around it is tanned. She has never had this before and no one in my family has ever had it. She is a little more emotional and all that but I chalked that up to being 15. My gut says call the LLMD right away and get her on rifampin. Anyone else experience Bart in more than one child?? Cobbie

Good luck to you, Santi! We started this journey a year ago at this time. After seven plus years of H***, we are getting relief. Rifampin is a wonderful drug for a lot of kids, including mine. It sounds like you are on the right path to wellness. We are here for you! Cobbie

We got a credit card from Fidelity that accrues rewards for all these expenses. The late payment fee is $29 even if you are one day late. This is such a tough question because the treatment is so expensive. My prayers are with you on this.

Great news! It's those little moments that really let you know you're on the right path!

DS, is in week three of the Tindamax and Bactrim DS for Bartonella/Babesia. For the past two to three days he has been super talkative and literally bouncy! This is behavior he had when he was six (he is now 12). He seems relatively happy and yet bored--Dog days of summer, here! Could this be a turning back the pages kind of thing? As the bacterial load goes down, could he be kind of working his way backward through some of the stages?? Also, he is showing greater interpersonal insight and remembering things from a long time ago (like right before he got sick). He is sleeping well!! This disease is so squirrelly (as is my son, right now!)!! Cobbie

We are having our home tested for mold. We fixed the roof line, drywall, insulation, sheeting, and next the carpet, but I feel like we should have the whole place tested, cleaned, etc. I think this is the thing that is keeping us from getting to the next level of health. How many are using or have used Welchol or cholestyramine? What were your results? I currently take simvastatin for bad HDL and was wondering if it works the same way? Our appt is on the 16th, so I would like to have all my questions in order when he has his checkup! Cobbie

Thanks for the reassuring ideas. This is something I needed to hear right now!

Is Jenks Wilma the same as Wilma Jenks? If so, you have come a long way already. Your daughter is lucky to have you! Cobbie

So glad you found the mold and had it removed. We just finished repainting our dining room after having to remove the drywall, insulation and change the roofline of our house! It was so worth it. We are waiting for new carpet and then our project will be complete!!!! I feel better already! Hope for better days ahead!

We started the Bactrim and Tindamax yesterday. Today, he already has the dry non-productive cough and fatigue. Sometimes it is hard to believe he is still so sick, we've been at this almost a year now. I am glad to see the herx; it lets me know that the Bactrim is working!!!!! Cobbie

Not sure if this is related or not, but I don't have Lyme (I don't think) but constantly feel like there are tiny hairs or fibers on my feet or between my toes and there never are. I wake up all the time trying to brush them off my feet and legs. Ds has never had a herx like that. I feel for you and understand how that feeling is unnerving. Hope it gets better soon. Cobbie

What medicines did you use for Bart?

Absolutely, it is possible.