tpotter

Lyme and some of the co-infections can cause chest pain. That is what my DS has gone through for yours, and as Ozium pointed out, her chest pain was infection, and abx would clear it. DS still gets occasional chest pain, but 2 cardiologists have said that DS's problems (including the fact that he was getting tachycardia) were from "infection", but they didn't know specifically what. Good luck getting answers.

That was beautiful. Tears are welling up in my eyes as I am reading your post. Thank you. It's wonderful to know how all of us banding to together to get the "word" out, share information, etc. is making such a difference. I remember 4 years ago after countless hours of searching on the internet (years of searching, actually), how excited I was to have the name of someone else who had a "tidbit" of information to help me get to the bottom of my son's 4 year-old problem (he was 8 years old, when he got sick, too.) I also remember 3 years ago, driving down to G-town hospital in the middle of the night with my DS for Dr. L. to admit him (through the emergency room) to finally get IVIG treatment, and his comment: "Mom, I'm finally going to get well!" Talk about "hope." It is a long, hard road, and I think we are winning the battle, and in the process finding so many pieces of information to help others with all kinds of neurological and psychological conditions along the way. And, we are doing it as parents, professionals, and just plain people who are interested...working together. Again, thank you for your beautiful first post. And, welcome to the forum.

All the symptoms you are describing can be symptoms of lyme, bartonella, and other co-infections.

I know you said you don't want to have the tonsils removed, but given the seriousness of your son's issues ("delinquency",) if it was me, I would do everything in my power short of nothing to stop the problem. Every PANDAS/Lyme specialist I know of says to get the tonsils out. Case in point, DS's tonsils looked fine. First ENT said "no way, I won't take them out." We went to another ENT, with an immunologist, peds. neuro and peds psychiatriast all insisting that they come out. ENT agreed. Tonsils were horribly covered in strep (and probably other stuff, too, that they may not have checked for.) Just my opinion.

Yes...definitely a freaking awful experience...but at least I know what is going on, vs. when my kids first got sick, and it took, literally YEARS to get any kind of dx (until then, the docs tried to claim one of them had "conversion disorder" (despite seizures, chorea, tics, massive OCD, anxiety, and even scarlet fever with a 104 fever that landed him in the hospital with what they thought was ARF!) The other was dx with Asperger's, and all these years later, it's clear that the Asperger's was, basically infection and environmentally triggered (got tremendously better with heavy duty tx.) We're using a different company than the one that put in the new a/c. Actually, I don't think the smell is necessarily from the a/c or, at least from improper installation. We were having the problem with the old unit still in, and I really think there's a great big hole in the intake ductwork that they are having trouble seeing through all the dirt. Oh, and the good news is, that DS said the basement windows do open...just difficult to do! I'll let you know how it all goes. Looks like the flooring guys may not be able to get to it this week, which means everything gets put off until the end of next week, due to the holidays. I'll hear tomorrow what the air samples come back as.

A/C guys are the ductwork guys (they do both,)and yes, much is in the basement. The washer and dryer are not in the basement. My hope is that while cleaning, they will find the original reason we had them here...why the smell from the basement keeps coming up through the ducts. Maybe I can open all windows and doors to the house as a whole, and set up our hepa filter that has been running upstairs the whole time, so we have even another source of filtering. Not perfect, but it might be the only option. Afterwards, we are having the whole house cleaned completely (I'm even having the unfinished basement cleaned.)

OK. Great suggestions. Now for the toughie. How would you suggest venting through a window that doesn't open? Neither of our windows in the basement open. Do they tend to have long hoses that they can bring up and out of the house? And, back to the original question. Would you suggest using the cleaning agents they are talking about using? I can't imagine just brushing it clean will get everything out. Even if the air tests "negative" for mold, I know for sure that the black mold that was in the bathroom was cleaned without the vent being properly covered (they used aluminum foil, and every time the a/c came on, the tape didn't hold, so everything they stirred up (including whatever they used to clean the floors, which seriously stunk) was sucked into the ducts, and spread all over the house.

Thank you for all the info. I thought you said, though that you didn't have lyme (I guess you aren't including bart in that, but I consider that a co-infection. DS16 has bart, babesia, and erlichiosis, and we've been treating for that for 2 years now. I have bart, and both of us have been taking rifampin for about 1/2 a year now. Plus I take azith (2 years), because of mycoP, and he takes tindamax (we pulse the rifampin and tindamax, and his stretch marks are fading very nicely. But, I have a question for you about the cholestyramine. Our LLMD put us both on it, and then I was reading, and found it can cause bone loss. I have osteoporosis (in my back) and osteopenia in my hip. The last thing I want is to get more bone loss, and I'm very fearful of causing it in my son. What are your thoughts on that? I have done accupuncture, and got incredible results for my mycoP...I was 100%, and it was an absolutely aamzing feeling. I've tried chinese herbs, but didn't get such amazing results, but they helped a little. I have heard, though that chinese herbs can contain a lot of mercury and other hard metals (our chiropractor who actually has used them herself.) Any thoughts on that? OK...we are getting the air handler cleaned. I talked to the a/c guy yesterday, and he said he can clean it in the basement (was hesitant to clean it at all with only 1 year on it, but when I told him how botched up the bathroom remediation was, he instantly agreed.) But, he wants to use the chemicals to do it. I've researched this, too, and found a site (now I can't replicate the site), but it gave pros and cons of each method. Unfortunately, I don't necessarily know what's in the stuff, because they said that these chemicals can have some pretty harsh stuff in it, but they don't have to disclose everything, because it's proprietary. My husband is very much against cutting the freon line, draining the freon (or whatever they've replaced it with these days), to take it outside. So, I'm stuck with having it cleaned inside. These a/c guys have 50+ years experience between the 2 of them, and they really do seem to understand the necessity of getting this right. I may just do what you are suggesting with the carpet. It means taking off another day of work (I have to get ds to the doctor on Thursday after attending a business meeting in the a.m., so it would have to be Wednesday, if the carpet people can even do that.) There's so much to do with so little time. I want them to go ahead and put the new flooring down right afterwards, so we can walk on it (we only have bathrooms upstairs now, because the one downstairs is still in contention.) I was going to have DH supervise the whole thing, but I don't think he really understands how it needs to be done. Personally, I wanted to be as far away as possible. I have actually made up a list of how DS and I were before everything started, after the initial assault (handiman's bad removal), and then how much worse everything got for both of us after the botched remediation.) Anyway, I just noticed the time, and have to run. Do you think the mold is out of you, or are you still fighting that? Thanks for all the grest suggestions.

The dog has made on the carpet plenty of times, and then my kids, in an attempt to make sure they got all the pee up, added a whole bunch of 409, placed a towel over it, and left it (stayed wet for days!) Plus, the dogs before us had made all over the carpet that was downstairs that we eliminated already (although, it was obvious there were stains on the subfloor, there was no evidence of mold, luckily. But, my fear is that there may be mold on this carpet (even the dog scratches continuously when he's on it,and actually likes it...he rolls around on it...i think it feels good to him). I'm afraid that if I cut corners by getting the regular carpet guys to remove the carpet, they may release even more into the air. On the other hand, I suppose I could get that removed first, then clean the ducts. The ducts are extremely packed with dust, and I'm sure, now, dry mold. We had the ducts cleaned last year, but I saw first hand the mess in the ducts when I had the a/c guys here the other day (they put a camera up the ducts.) I will call them, though, and ask how easy/difficult/impossible it would be to check the coils in the air handler,and get it cleaned out outside (it would have to be brought upstairs, and I'm sure the freon would have to be removed first. Not an easy process. Mold test results are coming back on Tuesday, and he did test the a/c as well, so we'll see what that comes back as. I agree, that all they had to do was properly block off the vent, and I intend to make sure they and insurance are well aware that they not only released mold and other toxins back into my entire house, but also poisoned us with who knows what in the cleaner they used. Short of suing them, I don't know what else to do at this time, unless they agree to pay for EVERYTHING (and I'm not so sure that the carpet is totally their fault.) When the flooring guys come out tomorrow to give me a quote on putting down the hardwoods on the stairs, I'll ask them how carefully they removed the existing carpeting. Also, if they notice any mold, they will have to stop immediately, and I will get a mold guy out here. I don't want them putting down flooring on top of mold. I will actually be out of town next weekend, and my son does not want to come with me, so he and his dad will probably stay in a hotel for a few days. But, I know that my DH cuts corners with stuff like that, and I won't be here to supervise it. So, I want to make sure that things go right the first time. There are so many decisions to be made about all of this, and because we can't keep breathing in the bad air, I have to move quickly. BTW...How are you feeling now?

Mycoplasma pneumonia and bartonella are 2 infections that I can think of that cause the kinds of symptoms your dd is having. My DS has the both, and the rages can be just awful. I would highly recommend that you check for the mycoplasma pneumonia (an atypical walking pneumonia.) Keep in mind that even if the IgM (active infection) is low, but the IgG (denotes that there has been infection, but does NOT indicate whether it is active or past, despite what many doctors believe) is high, does not indicate that she doesn't have it. Even if she had it in the past, she may still be reacting to it (like my son, particularly when reexposed.) Also, I would recommend that you have everyone in the family checked, as well, because it turned out that I was the culprit (my IgM was extremely high!) Also, keep in mind that mycoP can be a co-infection of lyme. If you PM me, I will send you the name of a LLMD in your area who we use. And, I do know of one person that I was sure had lyme based on her symptoms, that I referred to him, and he found something different, so he doesn't always dx lyme, but can look for other reasons for your dd's symptoms. At the least, though, in the meantime, I would ask your dr. to do a blood test (IgM and IgG) for mycoplasma pneumonia.

I'm actually going quickly, because having the a/c on is spreading everything around, and it's too hot to keep it off at night (no one can sleep.) But, I have been talking to a mold guy who can remove the carpeting with containment and negative air ($1400 which seems terribly expensive, but at this point, it's been almost a month, and I can't keep going with this.) I would also have him treat the subfloor, and he would also re-clean and encapsulate the floor of the bathroom if necessary. I am not putting down new carpeting. Once the staircase and bathroom are fixed, I was planning to immediately have the ductwork cleaned at that point. My husband said there is no way we can get the air handler taken apart like that, but I can certainly ask the a/c guys. All the rest of the floors in our house are hardwood or laminate, and we would be having hardwoods put in on the stairs and hallway. I'm planning to insist that insurance (or better yet, the company that screwed up) pay for extremely heavy cleaning of the house (after the carpet is out and the ducts are cleaned)...using our own equipment only. Would washing the floors constantly rather than vacuuming work better or the same? I am just so angry, because I feel like they exposed us to even more mold and toxins, plus exposed us to whatever poison they were using to clean the floors! That's interesting about the stachyb. I'll ask our guy about that. Basically, though, we can't put this off, as we can't keep breathing this stuff in. We are all really suffering, and having major flareups of our lyme and co-infection symptoms. DS even had an instantaneous rage attack against his brother last week, and I had to leave a doctor's appointment of my own, and race home. My other son was able to get away from him somehow (had him in a headlock,) and got to his car, and drove away to safety! He was pretty badly injured. My son hasn't done that in several years! I have 2 HEPA filters running continuously. I know many people are able to move out of their houses while all this is going on, but short of moving into a hotel, we just have nowhere to go. So, I have to pray this is going to take care of most of the problems, because I just don't have the money to completely replace the ductwork, and can't replace the a/c again (just replaced it last year.)

DS gets migraines, tremors, and a whole host of different neurological symptoms (including non-epileptic seizures.) Arms and legs get a weird, tingling feeling, numbness, severe weakness, and then it turns into tremors. Usually, we find out later that he's sick with something like strep (btw, he also has lyme, bartonella, babesia and erlichiosis.) I would suspect in your child's case that there may be some kind of infection/environmental issue going on, in addition to the lyme/bart, and may be triggering more. Could she have strep, mycoP, a virus, mold (we have had that problem for the past month, and all of our bart symptoms are way bigger...my hands are tingling and numb and night, and my feet are getting sore, plus DS's neuropsych symptoms have taken a huge turn for the worst.) I would test to see if she's sick with something in addition to the lyme/co-infections. Good luck.

Have you tested all family members for mycoP? Turns out that I was the culprit in our family (with the high IgM), and every time my IgM went up, DS16's doubled to >5! I would have everyone (including the dog, if you have one, btw) tested for mycoP and strep at the least. If she keeps getting reexposed, she's not going to get better.

Wow...great suggestions. I am getting the air tested by a professional that I picked out (insurance is paying for it, because I told them that I didn't think that the job had been done correctly by the company they called out to remediate. Our guy was blown away that they had left the aluminum foil covering taped to the a/c duct that dh had put there before they came in (after the mess was first made.) He said that they should have put on a thick plastic and sealed it properly. As a result, when the a/c was blowing, the whole thing was lifting off the vent, and of course, everything they were doing in the bathroom that was supposed to be kept at negative air pressure, was getting sucked right back into the house. Of course that company was trying to claim that the mold wasn't anything that bad, and that it was "nothing compared to other jobs we do." When I told them I could care less about other jobs, and that I had told them and the insurance company very clearly that we had immune deficiencies and were very sick from it, he still tried to get out of it all. He also told me that they didn't retest the air, because they only do that on rooms that are bigger than 25 sf, and I pointed out that our bathroom was 25 sf, and again, that should have nothing to do with it. Unfortunately, the insurance company is only limited to $2500 in total cost per incident, and I have to wonder what is going to happen when we are able to prove that they caused an even greater problem by not sealing the area properly. The insurance adjustor said that she would send out one of her people, and I told her I wanted someone that I chose. We are now waiting until Tuesday or Wed. for the results. We have 1 area of carpeting (on the stairs and upstairs hallway, and will have to pull all the spindles out of the banister in order to put down new carpeting. But, I have the carpeting guys coming out on Monday to give me a quote. My hope is to get the carpeting replaced on Thursday, and then get the air ducts etc. cleaned on Friday. I will take my DS out of town to my h.s. reunion (and he can visit with his grandmother), and DH can stay in a hotel or something (he can supervise the guys.) Our mold guy can put up protective sheeting and negative air surrounding the stairs. If the air comes back high, I'm going to fight insurance that they GUARANTEE the work of their guys, and despite the fact that they are limited to $2500, their mold guys made things worse. This whole thing just sucks...we were finally starting to really get better. Luckily, DS19 is now out of the house...we just dropped him off at college, and I'm praying that he doesn't have any problems with his room (it smelled good to me.) Even the dog was having problems. We are starting go calm down a little with the breathing, and such, but that has involved keeping the a/c off much of the day with the windows open, and only using it at night.

Since then the tics are about the same and pretty mild, the sleep is better. I thought since she seemed better, the tics would go away, but they have not. I am obsessively worried. My husband and parents are not, I think they are more worried about me! I have serious anxiety if I see or hear her tic - I get knots in my stomach and have trouble sleeping myself. I feel I haven't taken a relaxed breath since 10 days ago! I am so sorry to hear about your daughter, but WOW...you got on this very fast. That is absolutely the best thing you could have done (many of us, including myself, did not have answers for our children for years.) So, here's what I think: 1) To say that your child was asymptomatic is totally inaccurate...she was ticcing, at the least, and it sounds like also having difficulty sleeping (both are symptoms of PANS). Pediatricians need to learn that neuropsych symptoms are symptoms of strep (I don't know who ever came up with the "fact" that strep only had to produce physical symptoms. 2) Go to the NIMH website http://intramural.nimh.nih.gov/pdn/web.htm and print it out for your doc. Also, pull up Dr. Swedo's email and phone number for him to "consult" with if necessary. You may also want to get the Columbia University rat study that was done in 2010, where they produced tics and OCD in rats by putting strep antibodies into their brains. Another good study to pull up is the one in 2012 that was done at Tel Aviv University, where they produced symptoms, could see where in the brain it was affecting (the basal ganglia) and what medications were helping (both studies are easily available to find on pandasnetwork.org) 3) If it was me (after all that we went through trying to even get a dx...4 years worth just to get the dx, and now we're on year 8), I would not bother with the regular neurologist. S/he probably does not know enough about PANS, and may blow you off. Totally not worth wasting your time or money. If you PM me, I will send you some docs names. 4) I would also test for Lyme, but keep in mind that the standard western blot is only about 50% - %60 accurate at best, and the elisa (which they usually do first) is even less accurate than that. So, even if it's negative (and it's pretty much impossible to be false positive by the CDC standards), that doesn't mean she doesn't have it. Incidentally, given the fact that you have Grave's Disease, I would also test yourself. If it turns out that you have lyme, you may have passed it on congenitally, and the test results on your dd would be even less accurate. Luckily, lyme is a clinical dx, so a good LLMD (Lyme Literate MD) is the way to go with that (I can also give you some names of LLMD's you might want to check if you PM me). Many of us have found that there is more than just strep at play here, because being an autoimmune disorder, the immune system is involved, and if messed up, your dd is susceptable to reacting to a whole lot of different things. Incidentally, there may also be other issues, such as problems with the body processing vitamins, zinc, etc (LLM can explain methylation really well if you want more info.) 5) I know this sounds overwhelming, but honestly, you sound like you are so on top of things from the start, that I think your dd is going to do great (Dr. Swedo from the NIMH said that the best chance of a positive outcome to all this is getting the child treated quickly. You were on it from about Day 2) Wow. You are truly very special, and your dd is very lucky she has you for a mom!

Very interesting idea. I will discuss this with dh in the morning. And, the mold from our bathroom was sucked throughout the entire house after the handiman had removed all the moldy flooring and cabinets improperly. Now, we are fighting all of that. We were not having such severe problems until this just happened, which is why I am still hopeful that we can resolve the problem. But, the local units may not be a bad idea at all. Personally, I would like to just move, but it's a huge hassle, plus our house is currently worth considerably less than we paid for it. I have actually been shutting down the a/c off and on the past few days (during the day, and leaving the windows open.) The house actually has a nice, sweet smell, but it's terribly hot at night, and DS19 went a bit crazy this evening, so I turned it back on. Even the basement smell went away, but then came back the other night after running the a/c for another 24 hours.

Dr. T. doesn't do much with Lyme, either. Dr. B. and Dr. J. work together (Dr. B. on PANDAS and immune deficiency, and Dr. J. on Lyme. But, Dr. B. will also take awhile to get into. Detox is very important, so make sure you do it regularly. We have been using bentonite clay (1 tsp daily...we lowered the dose to make sure we could take it daily), and sometmes we use charcoal (if we're traveling, we tend to use that, instead, for obvious reasons.) Other people use other detox, and it is just important what works for you.

Getting the ducts replaced will cost at least $10K I just found out, and even then, he said that if there was mold in the ductwork, there would be mold in the walls. I called my insurance adjustor, because the bathroom (that was covered by insurance) had the a/c duct uncovered for 2 days before we got the remediation work actually done (as far as I know) correctly. But, we started getting extremely ill that very first day, and I suspect it may be in through the ducts. I want the insurance company to test the air all over the house, and the ducts. I've even turned off the a/c, except at night, because our allergies are out of control when trying to sleep with the windows open. So, if we get the house officially tested, as well as the ductwork, and it turns out they are not finding mold, would you suggest we get the ducts completely cleaned? They also said that the stuff they spray in the ducts is the same stuff they use in hospitals, but that doesn't mean anything to me. That's why I wanted people's opinion on this product. And, of course, as well on whether or not to get the ducts cleaned, given the fact that I'm not so sure that even getting the ducts replaced is going to help. DH and I have owned 3 houses since we've been married, and each of us owned one before we got married (a total of 5), and neither of us have ever had this problem before this house (which, incidentally, is the newest of them all...one of our houses was over 80 years old!)

I know how you feel about mold, and older houses. Unfortunately, I finally realized we will never get well until we get rid of all the mold. One place to check is your HVAC and ducts. Look for water leaks (that's the first thing we found by accident!) Also, concerning lyme. I wouldn't spend the money on Igenex until you consult with an LLMD. Our LLMD did not think it was necesary, because lyme is a clinical dx, and if your dd has bartonella, it can hide the lyme and co-infections, anyway, so the tests will be negative. Also, if she actually has congenital lyme, the tests may not show up as negative, because her body may not recognize it as foreign, so may not set up a response. Many LLMD's are also actively looking for mold at this point, as well. I am just starting down the mold path, so I can't give you lots of details, but check with "Red" who seems to know more about it.

I would also look into the possibility of yeast. Is she being treated with abx? The sweet tooth is a huge symptom, and sugar feeds yeast.

Ooops...double post

Personally, I would be looking into other things, too, such as the possibility of mold (we just found a large source in our house, and may also have it throughout our a/c ducts as well.) When it was stirred up (by the handyman removing it improperly when he found it, and didn't tell me,) we all became extremely ill. DS is having a huge increase in anxiety,OCD, had a massive rage attack last night (attacked his brother out of nowhere...hasn't done that in a very long time,) and many more symptoms. We did not suspect there could be mold, but there's now no question it's playing a role. Also, I would consider checking for Lyme. Maybe Dr. T. could put your DD on a combo of abx to tide you over, but I would also honestly suggest you get her and DS tested for Lyme. Again, this was not something we ever expected to find, but it turned out that both of these, plus other co-infections, as well as strep, and who knows what else, are all turning out to play a role.

I'm sorry to hear about the setback, but thrilled to hear that you and she got some excellent relief, and that you both now know that something does work.

Thank you Red. I was hoping you would weigh in on this one. My gut was telling me the same. First of all, my dh corrected me...the humidity dropped about 5%, but I noticed a HUGE change (for the better) in the loss of odor in the basement (didn't have that horrible musty odor today that it's had before.) The A/c is only 1 year old, so yes, I think it could handle it. Also, when they remove the old ductwork, isn't the mold going to shake lose? We've got a ton of stuff down in the basement. Do we need to have mold remediation experts work along with them to make sure it is blocked off with plastic, negative air pressure, etc, etc? We just had a bunch of mold released into the house a few weeks ago when our handiman didn't know there was mold in the bathroom (water leak), and removed the floor and cabinet improperly. We are now all seriously paying the price, and my 16 y.o. just had a massive rage attack that I am sure is, at least in part, related. I don't want to go through this anymore. How much did you pay for new ductwork? What would you thoroughly clean the air handler out with? Who would you have do that in order to make sure all the mold didn't get all over the house. Our basement is not a walkout, so everything would have to be carried upstairs. We used insurance for the bathroom, but I don't know if this would be covered, because there wasn't an overt leak that we know of that caused this problem (just an old a/c probably.)

We just had the a/c guys out here...having problems for the past 5 years with smell, and the a/c making us sick. OK. they showed me what it looked like inside my ductwork using a camera, and they said it looks like the last cleaning, 1 year ago, was done very poorly (there was a lot of dust, and possible old areas of water leakage from the old a/c unit (of course I'm thinking mold, and they said possibly.) So, they are saying that they use a brush to clean everything, it goes straight into a double hepa filter (supposedly none into the air...I'm scared, anyway), and then they spray with this stuff (bioclean and biobreeze) that is supposed to kill the mold completely (they said it goes in as a mist, and circulates through the entire house, so should get rid of any mold that way. 1) Does anyone know if this stuff is safe (I looked it up, and it looks like it is water, alcohol, and fragerance) 2) Does it work? I asked repeatedly about getting new ductwork, and they said this makes more sense (there area lots of little holes that could be sealed up.) Now, here's the really interesting part. I turned my a/c off 2 nights ago, and left it off until last night with the windows open upstairs. I turned the a/c back on last night, because allergies from outside were killing us, and the heat was too much for my kids. This a.m., my husband reported that the humidity in the basement had dropped 25% (we've been struggling with it all summer, and have a dehumidifier going all the time). Also, when I went down to the basement this afternoon with the a/c guys, it actually did not smell musty like it has been smelling. The a/c guys couldn't explain this one. Any ideas? It was really freaky (btw, our basement is sealed extremely well...no water leakage that I have ever seen.)