mama2alex

Thinking of you today. Hope recovery is going smoothly! Sorry you had to battle the surgeon on top of all the other stress, but hope you get some answers from the lab.

I also wanted to mention that my husband's best friend had rheumatic fever as a child and had to have open heart surgery a few years ago. He was in his early 40's and came through it very well. If he can do it, your son will be fine, I have no doubt.

Praying for a successful surgery and quick recovery. Hang in there - you are an incredibly strong mom!

Tried again but I'm getting the message "The member kimballot cannot receive any new messages."

Trying to PM you...

For those who've done vision therapy with your child, can you tell me what benefits/improvements you saw? Was it worth the time and money? Has it improved your child's handwriting, focus, grades, mood, overall happiness? This just happened to come up when our LLMD was doing an exam on my son for a summer camp form. He said it looks like he might have convergence insufficiency and urged me to have him evaluated. I've been doing a little reading and was surprised to learn that CI can cause ADHD symptoms, something we're also taking a close look at right now, as well as ODD symtoms, which we've seen all his life. My son seems to read well and likes it, but he avoids writing like the plague, is bright but doesn't always do well on tests, and has a lot of trouble focusing on homework. The evaluation and therapy are expensive, so if anyone has seen great results please let me know. I need to know we are not flushing money and need to be able to convince my husband, if I decide this is something we should pursue.

We were planning to go in April, but I wasn't well enough. I'm somewhat better - not completely well - but am planning to take my son anyway. I figure I'll find the strength and energy to get through it, for his sake. He hasn't been very coooperative with therapy in the past, but again we're taking a leap of faith. I have been socializing him to the idea that it is going to be uncomfortable and a lot of hard work, but will be worth it. He has been backsliding after going off antibiotics in January and is now herxing from mold treatment - and missed the last 6 weeks of school - so he is highly motivated at this moment to do whatever it takes to feel better again and be able to attend school. We'll see if that motivation carries him through the therapy... When are you planning to go? Have you reserved a spot yet? I think they are filling up fast for summer.

Yes, one plus sign is enough. That indicates a definite positive result for that band, which is very specific to Borrelia. One of the first antibiotics our LLMd put my ds on was Rifampin and we saw improvements pretty quickly. Rifampin is used to treat Bartonella, which is a common Lyme coinfection. After a month, he added an abx specifically for Lyme and we saw more improvement from there. Did they send you the test results for coinfections - bartonella, babesia, erlichia, etc? False negatives on these are very common, as I'm sure Dr. J is aware. I would make sure they give you copies of ALL test results, so you can go through them and make sure you understand what they are saying. Running results by folks on this forum can also be helpful. The doctors don't have the time to explain them all, and quite frankly, it's been our experience that they are not always correct in their interpretation of the results, so you have to be careful, do your own research and get other opinions. I think in general Lyme docs are overwhelmed with so many patients battling a very complicated disease.

After our son's first IVIG, we saw nothing for 3 or 4 weeks, then he was worse than ever, with raging and suicidal thoughts/expression. At 7 weeks post IVIG we saw huge improvements. Unfortunately, these only lasted for about 2 1/2 months, until he got a virus and went downhill again. We ultimately found help with Lyme treatment which was started 4 weeks after his second IVIG. I think the IVIG may have helped kick-start the Lyme treatment, but not sure.

One more thought - can you call his office and see if you can get in for a follow-up sooner than September, or have a phone conversation with him? Tell them you are very confused by the response and need to ask him a few questions. September is a long time to wait.

I'm really sorry you're going through this. I've been there. You hit a road block, a doctor isn't helpful, there's a flare - and you feel like you'll never get your child well. But you will. There is obviously something medical going on - you just haven't figured out what yet. A few thoughts: 1 - This is obviously PANDAS/PANS because a) he has all the classic symptoms, tics started after a strep infection and c) you've seen some improvement with antibiotics 2 - Band 31 is very specific for Lyme (Borrelia), so if he's IgG positive for 31, he's been exposed to Lyme at some point and this is very likely one culprit. I'd recommend reading Pamela Weintraub's book "Cure Unknown: Inside the Lyme Epidempic" to get a better understanding of the testing and why it's less important than a thorough evaluation by an LLMD. Also, reading the book will help you make a better intuitive call on whether you think Lyme might be involved. According to the book, Dr. Jones was seeing kids with sudden-onset OCD come in with Lyme as early as the 1980's. 3 - We've never seen Dr. J, but I understand he is an excellent LLMD. However, he has been under pressure from the state health officials for years, and they are still attempting to put him out of business. I have to wonder if this doesn't make him more cautious when diagnosing. Not sure about this though. 4 - I know you're upset right now, but I would definitely go to the follow up appointment with him and ask lots of questions and really try to understand whywhether he is saying it's not Lyme. It's possible there was a mix-up and the person on the phone gave you the wrong info. To me, it sounds like there probably is Lyme (based on symptoms and positive band 31). Hang in there!

Thanks for posting this. I've known for a long time we need to revisit methylation. DS had full testing done with Yasko about 6 years ago (before PANS hit). We found the protocol recommended by our doctor - TONS of supplements - overwhelming and expensive (and we didn't see any behavioral or health changes), and didn't do it for long. It sounds like some parents here are helping their kids without too many added supplements, so I want to try this again. I need to try to understand this myself, but have been struggling with brain fog. This looks like a good place to start!

Our ds gets angry/aggressive on Benadryl. And after giving it to him ONE time 3 years ago for sleep, he has never forgotten and begged me for it a few times since. He does not remember being aggressive - thinks I'm making it up - and seems to crave or be attracted to it for some reason. I think we are the exception, but just wanted to mention it. Benedril is dyphenhydramine and it is also sold OTC as a sleep aid. Same med, different label.

I'm so sorry he's backsliding. In the last week you've mentioned treating for yeast and low vitamin D. Have you added the Diflucan and/or D in the last week - or changed anything else? If so, did the new medicine/supplement coincide with worsening symptoms? I know its hard to track all these things - especially when you're sleep deprived and stressed. If it's not something along those lines, I agree with others on consulting with an LLMD. This didn't make any sense to us back at the beginning, but of all the things we've tried, treating Lyme/coinfections has made the biggest difference for our son.

I don't think they "said" this. If you click the link in this quote, you'll see that the writer went to their website and didn't quote word for word, thereby changing the meaning for those of us who know this topic well. PN's website says: "PANDAS is currently a clinical diagnosis and open to interpretation and subjective observation. There are currently no conclusive diagnostic blood or neurological tests to be relied on."

I'm so sorry to hear this. You guys will be in my prayers. I don't know how tight your time frame is, but could you maybe call some LLMD's and ask for referrals to a Lyme-literate cardiologist in your area? You never know. He can't be the first Lyme patient to be recommended for heart surgery, so maybe an LLMD can refer you to someone who's more knowledgeable about Lyme/Bart involvement in heart issues.

That isn't standard practice in my experience. Our doctor's office will charge us for blood draws or test kits (urine, for example), but not just for filling out a lab slip. That's part of the work of the appointment. And if they're going to charge you for filling out a lab slip, that seems excessive! We only pay something like $45 for a blood draw. I would call them and let them know you think there's been a mistake on your billing and see what they say.

Just wanted to bump this and make sure everyone has seen it.

The 24/36/48?! hour rule is just a theory as far as I know. I've never been able to find actual studies that prove this. I don't know why mainstream doctors repeat this to people over and over. My dh was bitten two years ago. We are on the west coast. We saved the tick and had it tested by Igenex. In the meantime he was treated with a month of doxycyclene. The tick came back positive for Lyme, but negative for other diseases (Bartonella, Babesia, etc) so we stuck with just the doxy. He ended up doing two months because he wasn't very good about taking the medicine every day for the first few weeks (before the test results came back), and once we saw the tick was carrying Lyme, everyone agreed it was prudent to do one more month just to be safe. We were already seeing an LLMD for my son and myself, so that made it easier for us to get him treated so quickly. I think you should find a doctor who will treat the bite. Don't wait for symptoms to appear - it's really not worth it.

Thank you for posting this!!! My ds was supposed to start "Valtrex" this morning, but I forgot, so he was going to start tomorrow morning until I saw your post. I checked the bottle and it's actually the generic - manufacturer, RANBAXY. I just printed the article and am headed over to the pharmacist. THANK YOU!

I think you have been a great mom and have done everything right, but I think the LLMD is missing something. Even the most well-regarded doctors aren't perfect. LLM mentioned mold, pyluria and heavy metals. These issues can block healing from Lyme/co-infections. Has he been tested for any of these, or in the case of mold, has your home been tested/inspected? I've talked to/heard of several people who were not getting better, then addressed mold in their home, then were able to heal from Lyme. I know others have had this experience with pyluria, and heavy metals can do it too. You can search on these topics and find informative discussions on this forum, or just post a specific question about any of these topics and folks will help you out. Also, this is a great blog which talks about all 3, plus other Lyme-related topics: http://betterhealthguy.com/joomla/index.php

Not a problem! I was in a hurry, so I didn't really explain myself. I was referring to detoxification, but not of other meds. When you give antibiotics, sometimes you kill off bacteria faster than the body can handle. When the bacteria die, they produce toxins and these need to be excreted from the body. Sometimes when this happens you can see a worsening of symptoms, which many here will refer to as a "herx" or "die-off" reaction. It can be helpful to use supplements (and other things) that help the body get rid of these toxins. Bentonite clay, charcoal, lemon water, exercise, homeopathic drainage drops, cholestyramine, and Burbur are all things we've used at one time or another to help with detox. Sometimes this is the only thing that makes the treatment tolerable.

Along the lines of what tpotter suggested...Our doc mentioned today that low WBC which we ran into earlier this year could be due to Erlichia. I looked up Erlichia and in more severe cases it can cause neutropenia, high fever, rash, elevated liver enzymes, and low WBC. Just a thought...

A good friend has recently brought to my attention that our ds presents with ADHD. She's researching it because her son has been diagnosed and they are trying to go the medication route. We are planning to have ds evaluated specifically for ADHD because I've begun to wonder if a) this issue and all its consequences are contributing to his school refusal and it is just becoming more obvious now because his workload and other responsibilities are increasing significantly now that he's nearing the end of 6th grade. I've always been more focused on the underlying cause than symptoms, and we are continuing to work with a LLMD/DAN doc, but the school refusal has us on the brink of pulling him out of regular school, something neither he nor we want. I'm just wondering if others who've dealt with school refusal ever felt there was an ADHD connection - as in they are anxious about being at school because they have trouble doing their work while other kids seem to have no problem and get in trouble for talking, getting up during class, impulsive behavior, etc. I've heard most people talk about OCD as the primary problem that prevented kids from getting to school, but now that we're looking at this closely, I (as well as my friend and two of our teachers) feel that the ADHD issues could be causing some (possibly most?) of the anxiety around going to/being at school. Other things that make me wonder if ADHD is the primary problem contributing to school refusal are 1) his separation anxiety, which was severe at the beginning of PANS isn't much of an issue any more. He stays home alone, goes on overnights, and has no problem saying goodbye to me in most situations. 2) We tried Zoloft last Fall for the anxiety and it had no effect, except to cause intrusive thoughts once we upped it past 6mg. Thoughts/experiences would be much appreciated!

This could be a die-off reaction (herx). Are you giving her anything for detox?