cobbiemommy

My DS is herxing hard again only 10 days after the last herx. He has been crying and is very upset. I know some of it is the limitation of the picc line, but I think the level of emotion is because of a herx. He wants a normal life without pain, pills, iv meds, and restrictions. He feels like God has abandoned him and that God could make this go away if he wanted. It is truly heartbreaking. I can't wait for the days when he will be truly healthy. On the bright side, his level of energy seems to be way up. He is not running any races or anything, but at least he is not telling me how tired he is (like he did before IV). I dreamed the other night of him being taller than me and playing football. He has never played football because of his illness so I guess the dream is just wishful thinking. DS has very broad shoulders and his hands are going to be huge (just like his daddy) and he just got part of his braces off, so his smile is awesome. I pray for him and all of our children that they get to enjoy just being a kid or a teenager.

Another test that you might request is a streptozyme titer. Ds, never tested positive for ASO or antiDnase, but did test positive on Streptozyme titer. He had strep inside the tissues of his nose, so he never would have cultured positively. This is a common test paid for by insurance, but Dr. B was the only one who ever ordered it. I think he literally saved my child's life.

I sent a link about this article to all my family members. Thanks for the information-this is truly criminal.

She had some congestion along with her cough. He sent her test to the local state university for testing. They were able to do the further testing. You want a good research lab to analyze the sample so you will know what will kill the staph if it is present. Swab was several inches long, so I would definitely recommend having medical personnel administer the test. Ughh

My DD had a constant cough that a clinic kept diagnosing as allergies. She was even on a round of antibiotics for an ear infection that did not help with the cough. We took her to a LLMD and mentioned the cough. Long story even longer, he cultured her nose (not fun) and she tested positive for Staph. They further cultured it and it was resistant to most antibiotics. She was put on a compounded nasal spray scrip of Mupirocin. Problem resolved.

We are on day 6 of IV abx and I think something is breaking loose. His PICC line was bumped today in PE and home health nurse had to come and reapply dressing. (I hate freaking PE) It hurt when she changed it and he cried so much. Since then, he has just been crying all night. He is so stressed. I have not seen crying like this since over a year ago, before IVIg and we started seeing Dr.J./Dr. B. I am pretty sure this is a herx. Please remind me how to help with the symptoms. He is drinking tons of water and he had 800 mg of Ibuprofen around 5 (It is 8:30 now). He had an apple with a big helping of peanut butter (tryptophan). I will try to get him to take an Epsom salt bath. What more should I do?

These are just my observations... Ear drainage has decreased 100% since starting IV abx. Before abx, it was a yellowish sticky goo that had to be cleaned out if not every morning, at least every day and a half. Now, nothing... Sinus issues seem to have resolved about 50%. I was about to start him on an antibiotic nasal spray, but now I am not sure if I will need to. We will just wait and see for two more days before beginning the spray. No improvements on the cognitive front which is not surprising. I did not expect anything yet. On the plus side, his PICC line did open up a conversation with a girl at school. She told him she had Lyme when she was younger and that it took about a year for it to go away. He now knows of one other young person who has beat Lyme. His dad took him to a podiatrist that recommended orthotics (not custom made, so a little cheaper) for his flat feet. He was having severe ankle pain especially in the mornings. After only wearing them for a few days, they are helping his ankle pain. Dr. J noticed that problem and pointed us in the right direction so I am again grateful to that wise man. We are making baby steps towards total body healing.

Wow... I think this is great news for everyone. Maybe now, future generations will not have to go through all the issues that our children have gone through.

I will pray for your son. My own prayers seem pretty weak but I think that is because I am tired... There were times when I felt like I had surrendered all to the Lord, but now I know that I wasn't even close. I hope I am able to just open myself up to all that God has to offer for DS and myself. This is a very humbling journey.

DS, 13, will start IV treatment tomorrow. PICC line will be inserted around 7:45 and first dose administered right after that. I am really nervous but hopeful that this is the beginning of the end. If you believe in the power of prayer, please send some up for him tomorrow. cobbie

I am a big believer in Dr B and Dr J, but there are limitations to both as listed above. Dr K was very helpful, but limited help when we figured out we were dealing with Lyme and Bartonella. Good luck.

We live in midAmerica, more rural than urban and DS had braces, then palate expander and now braces again. We spent around $6500.00 for that great smile. DS, had over jet, which is overbite, but with the teeth pointed towards the lip because of severe overbite. He will get the bottoms off next months and the tops off this summer. :) DD, had palate expander and one set of braces. Cost was around $4,000.00. No insurance for any of this. I should at least get a ride in dentist's new Corvette.... Cobbie

Oh honey, I have so been where you are. Unfortunately, I will probably go there again before this is over. We are light years away from the worst of the worst, but we still are not to full healing. The years of stress are a lot to take, and occasionally we break down. Unlike our wonderful doctor and nurses, we do not get to leave all of the stress at the office, we stay home with it and it can be unrelenting. Please don't be too hard on yourself, allow yourself time to cry and scream (away from the kiddos of course). Just know that we are all in this boat together. (Personally, I am ready to jump for it and just swim...) Cobbie

Just to clarify-what titers are you talking about? Strep or mycoplasma?

Dr has prescribed Iv Rocephin for DS. He is currently taking orals and probiotics and some supplements. He drinks vast amounts of water. I bought some new pearl probiotics that have 5 billion units (I think) and Alpha lipoic acid, as well as milk thistle to help with the detox. I know Rocephin can be hard on the gall bladder. Any recommendations from Mom's who have been there? I want to protect him as much as possible from yeast, gallbladder issues and horrible herx reactions. Cobbie

I would have to agree with all of the above posts. To Queenmother (love that name), our experience has been that the Bartonella would not even budge until we added Rifampin to the mix. Expect a huge ramp up of agitation and obnoxious behaviors, but then things should get better for your child. We are still fighting Bartonella, but we are gaining on it!

Hope he had a great time!

I am just curious as to what a naturopath can do for our children. I understand the basics of their practice, but I guess I am a skeptic. How can they complement allopathic medicine? What successes has anyone had with a NP?

I just want to say that DS has improved on orals, but we are still seeing cognitive problems. I didn't want anyone to think that there had been no improvement in all this time. He is able to go to school all day, does not have rages all the time, his bartonella rash is iffy; it flares from time to time. CoQ10 and acetyl carnitine have helped with the fatigue in a huge way. MDmom, what gains have you seen in the last year for your children?

How the heck do you know when it is time to ask about IV medications? I feel like we are there. We have taken almost all of the possible orals for Lyme and we are still having cognitive and processing issues, also mood-grumpy. We will see Dr. J and Dr. B on Monday. How does IV meds work when you live in another state from the prescribing doctor? Cobbie

I can so relate to this article. I have a very talented 16 DD who has enormous athletic potential as a basketball/softball player and a 13 DS who has Lyme/Pandas. I once told my daughter (by mistake), that if I could devote as much time coaching her as I do researching PANS that she could be an Olympic athlete. Her response, "Why don't you?" Mine, "I would be dead from all of it!" It is hard to balance all of this. She feels neglected, despite the fact that I go to every home and away game and every activity that she participates in! My son feels like he is slighted in the spotlight because she is such a good athlete and is an officer in FFA and an A student. He really struggles for good grades because of processing issues. They finally have a little common ground in that they are both in band. I need the wisdom of Solomon to navigate the situation. I think we all walk the fine line of being the parent our children need.

I bought some Quercitin on my lunch hour and gave him his first dose when I got home. I am keeping my fingers crossed. I might buy some Benadryl as well.

DS, 13, was a total crab tonight. He just wanted to argue about everything and no it is not typical teenager behavior. His cheeks were very red and his face just looks puffy, especially around the eyes. He is a big boy, so I gave him 600 mg of Advil and the redness went down but the irritability remained. We are scheduled to see Dr. J and Dr. B on the 15th of this month. If this trend continues, how will I make it to the 15th? His scrip of Augmentin ran out about a week ago and could not be refilled because we had not seen the Dr. since October. He is still taking his allergy meds, Biaxin, Rifampin, and Nystatin. About three weeks ago, I did something I hope I don't live to regret. We went to another immunologist for a second opinion to justify getting him IVIg with the insurance company. He said that we had to give the Prevnar to see what the strep titers would do. I'm not sure why, but I agreed and we did it. We can't test for another week to see what happened to the antibodies. Every year at this time, we go through he** because of spring pollen and open burning of yard waste/fields. Every year, he gets mean/angry, cries a lot, and has school refusal. Last year, we had to have a steroid taper to bring him back from the brink. It worked wonderfully. I am hesitant to do another steroid taper because of the Bartonella/possible Lyme and endocrine side effects, but I will if it gets him to a better place. Any ideas?

Yeast? On the plus side, I am glad you have gotten this far. It still gives all of us hope!

If antibiotics are working, don't rush into IVIg. Is immunologist willing to do a steroid taper? They really helped us, although we did IVIg too. We paid a huge amount of money to the medical facility in Chicago. Keep going with your gut on this. Is there a way to go to Dr. B's office? He was a lifesaver for us.