GraceUnderPressure

Here in TX we finally had a good, soaking rain after serious drought - the mold spore counts went from very light to mega heavy the next day. My ds19 & I were pretty messed up. I guess it's safe to say now that mold is definitely an issue for us. So I am wondering if those of you who have been working to reduce mold in the home can tell me the recommended approach for tackling this? (ie. having the air ducts cleaned should probably wait till the bathroom & kitchen mold has been taken care of, right?)

We really like Thorne's Basic Nutrients III (the number indicates that the salts are in citrate form & it is w/o copper). Unfortunately, with my DH's recent cut in hours, we can no longer afford it so I look forward to seeing what other people are using.

Just want to share that our United Healthcare plan only covered Igenex as an out-of-network provider. Since we had nothing towards our out-of-network deductible & it was less than that, we got nothing back.

Thanks, TexasDad! I found an old thread that was really helpful http://www.latitudes.org/forums/index.php?showtopic=9678 & I'm going to add it here in case anyone else needs it. Possible codes 323.8 encephalitis 323.9 unspecified cause of encephalitis, myelitis, encephalomyelitis 323.41 encephalitis and encephalomyelitis due to infection 348.30 encephalopathy unspecified 392 rheumatic chorea 392.9 rhuematic chorea without mention of heart involvement 333.0 other exptrapyramidal disease and abnormal movement disorders/ includes: other forms of extrapyramidal basal ganglia, or striatopallidal disease 279.3 unspecified immunity deficiency 279.4 autoimmune disease not otherwise specified 279.9 unspecified disorder of immune mechanism UHC denied coverage for 348.3. His office is re-trying it with 279.4 and the 2nd one was went thru with 279.0 (hypogammaglobulin or some such). I'll try to post back which one - if either - worked.

Well, this is not good news for anyone, but PANDAS families especially (though honestly, I've been wondering if there is not already similar forms of resistance occuring in our country) Second Hong Kong Child Dies of Mutated Scarlet Fever Wednesday, June 22, 2011 By STAFF, Associated Press HONG KONG (AP) - A mutated strain of scarlet fever more resistant to antibiotics has killed a second child in Hong Kong, the first deaths from the illness in the southern Chinese city in at least a decade, authorities said Wednesday. Certain characteristics of the new strain likely make it more contagious, and it may be responsible for an outbreak sweeping Hong Kong, said Professor Kwok-yung Yuen, head of Hong Kong University's microbiology department. The new strain strain has about 60 percent resistance to antibiotics used to treat it, compared with 10 to 30 percent in previous strains, he said. A 5-year-old boy who died at a hospital Tuesday was confirmed to have scarlet fever Wednesday. A 7-year-old girl who died in May was the first patient in Hong Kong to die of the illness in at least 10 years. Hong Kong has had 466 reported cases of scarlet fever so far this year, about double the annual total. The outbreak may have spread to neighboring Macau and mainland China. About 9,000 cases have been reported on the mainland, about double the average from recent years, although no information is available on deaths, the Hong Kong Standard newspaper reported, citing health officials. Macau has 49 cases, a jump from 29 cases in 2009 and 16 in 2010, but no deaths have been reported, the Macau Daily Times said. "We are facing an epidemic because the bacteria causing scarlet fever is widely circulating in the region - not only in Hong Kong but neighboring places such as the mainland and Macau," said Thomas Tsang, controller of Hong Kong's Centre for Health Protection, the Standard reported. Scarlet fever is a streptococcal disease characterized by a bright red skin rash, fever and sore throat. It's most common in children under 10. Infectious diseases are a particular concern in Hong Kong, where the 2003 SARS outbreak killed 299 people. Nearly 500 more deaths were reported in other countries. (Copyright 2011 Associated Press. All Rights Reserved. This material may not be published, broadcast, rewritten, or redistributed.)

I am really confused. United Healthcare has rejected the initial claim for ds19's IVIG treatment. They have a letter online that says they cover IVIG for PANDAS without precertification. But his dr's office says that there is no diagnosis code for PANDAS (which is the diagnosis given my ds even without a known strep infxn since ~6yrs old) so they had submitted under the code for encephalopathy. Apparently that is the reason for the rejection of coverage as UHC says IVIG is not shown to be helpful for that. So the dr's office is asking me to find out what they need to submit that under (so that it doesn't look to insurance like they are just trying any diagnosis code to get it thru) but when I call UHC, the lady says that they don't give diagnosis codes to dr's offices - the office is supposed to have that info not them. Can anyone here tell me what diagnosis code worked for their insurance - ESP if you have United Healthcare? Thanks! ~Grace

Where is the video link? Am I missing it? (And what is KPU/HPU?)

We have also been slowly tackling long-standing mold issues in our home. There is only so much we can do at a time, with time and money being limited resources for us as well. I remember being told on a yahoo group to move out immediately because the mold can be so toxic. But I also felt, gosh, these have been long-standing problems, my health continues to improve with other treatment, so decided to just stay in the house and do it as we can. In these situations it seems to me some key things to keep in mind are, is health at least hanging steady or improving, and, to be careful of increased exposure during the remediation--that can be a dangerous time. Thanks, Michael! That seems rational. It also turns out that one of the girls in my kids' tae kwon do class was throwing up last Wed so we may have actually caught another gut bug after all. (Never thought I'd be praying for a stomach bug!) Last night I began feeling nauseous & this am one of my other boys complained of the same. The symptoms have been building up for days & is lingering though which is not like any stomach bug we've ever had before. I thought I would just wait for it to pass, but now I'm thinking maybe we should be doing something - but what? Is it possible we are experiencing a combination of both mold exposure AND a stomach bug at the same time?

Several of my sons & I have had problems with that kind of peeling & I read that people with disorders or difficulties in metabolizing fats will have that. And those of us with the peeling feet are the ones with the most digestive issues so it would seem to make sense. (Of course, it's probably the bugs that are messing up our fat metabolism in the first place)

Thank you! I will try them again on Monday & also get on the waiting list. God willing, an opening will come up that coincides with my DH's schedule so that we can swing it.

We just discovered a few weeks ago that there have been multiple leaks under our kitchen sink & a black mold is growing on/in the cabinet's pressed wood (at least it doesn't have that greenish-black look of the classic kind of toxic mold - as you can tell, I'm trying to cling to what comfort I can manufacture). We are worn out & nearly broke. How can we clean up the mold in the house if it's already a wreck? I know we need to get a mold remediation company in here, but the house is a mess as I have been "triaging" our family's various problems for about a decade now - since we moved in to this new house. (Currently: My DH just got his hours cut AGAIN by another 3 so that his once 42 hr wk is now down to 34. And we just had to replace our computer's hard drive, had to have our dryer repaired yesterday, & now the mbath toilet is making jackhammer noises every time we flush that we can't get to stop no matter what we replace, so we're going to have to pay for a plumber on top of the possibility of having to pay for 2 IVIG treatments. And the things that have helped my ds19 the most - taekwon do lessons & the lomatium herb - we're not even sure if we can afford to keep doing) Anyway, sorry, my brain is hyperventilating over here. What do y'all think would be the best thing to do? I'm thinking go ahead & fast track a clean up job on the house as if we were moving & then get a remediation co. in here to advise. We've lived with the mold obliviously for who knows how long at this point, could a few more weeks to a month be that much worse? (Though I am asking this even as another stomach bug(?) has hit my ds8, who just threw up, and half of us are feeling nauseous. I have never felt so overwhelmed & helpless as I do now.)

Just called to verify our appt with the LLMD in Louisiana for this Monday, only to learn that the dr has developed some relatively serious health problems & had to cancel all new pt appt's. They called us twice to let us know but turned out to have our phone number wrong so we never heard. Thank goodness, I called before we drove out there! I went ahead & told her to put us on a waiting list, but it doesn't sound hopeful to me at this point. So I tried calling Dr. C's office in Missouri & the office is closed on Fridays. Anyone have any idea how long a wait it is for a new pt. to see Dr. C? We've waited 3 months for nothing! Agh! We don't have time to waste! And now we're probably going to have to wait another 6 mos or something! Why does all this crap have to be so darned hard?

Thank you, Kim & Laura! I'll look at the links when I get back from my errands I'm about to run. He hasn't been experiencing increased anxiety with his tics. I had thought of dropping him from 75mg to 50mg, but am afraid of rocking the boat any more right now. I figure I'd better wait till we see the LLMD since it's this Monday. Unfortunately, ds19 has no positive strep in his records - but then he rarely gets sick (& when he does it's low key), it's always been his condition getting worse instead, so why would I have thought to run to the dr's office to get him tested when PANDAS wasn't even on my radar till a short time ago? His Cunningham tests came out just below mid-level PANDAS, but those aren't recognized by insurance, right? We figured that even if the IVIG didn't help ds's tics, at least it should help with repairing some of the damage of long term inflammation in his brain. I thought it might be worth looking up that study & throwing it in there for their consideration, but suspect that insurance will only care about clinical research directly relatable to my son's type of PITAND. This is depressing. My DH is about to get his hours cut again, we've already been wondering how we're going to afford whatever the LLMD wants us to do & now we have a $25K bill looming over our heads, too.

Hello all! Haven't posted in over a month as things have been more stressful than usual on the homefront. Just wanted to let you all know how it went & hoping for feedback A summary of our case for background: My ds19 has tics generated by compulsions. So far he tests negative for strep, possible for myco p (ambiguous results), and positive for Lyme. He is taking zoloft and zithromax. He received IVIG treatments on Apr 28th and then again on May 29th (1gm/kg for each) After the first IVIG, my ds19 had the headache & threw up about 24hrs later, but then was improving - only a little bit, but it seemed to be increasing a bit more each day for the first week. Then my ds8 caught a cold-type bug and ds19 started having some tics again. They were tics we hadn't seen in a while so I was hoping it was just a turning back the pages kind of thing, but then in another week or so, ds8 got sick with a stomach bug where he was throwing up (don't know if it was the first bug or he picked up a new one, but ds8 is my other child who shows PANDAS-type symptoms & he gets sick a lot). We had the 2nd IVIG on the tail end of this barf bug going thru the house, & we had less side effects (headache, but not as bad, and no throwing up), but we have seen no gains at all. My ds19 was losing all of his gains. We're seeing a lot of tics that we hadn't seen in a while, but it is also definitely a worsening so I don't think we can call it 'turning back the pages' really. We had been on the herb called lomatium prior to IVIG, but we ran out & I thought the zithromax was keeping things in check with the Lyme. Apparently that was a big mistake. My son has been telling me all along that the lomatium has helped him the most, but I thought it was the zithromax & that the lomatium had just boosted its effects or something. I started him back on it about 2 wks ago & we're starting to see incremental improvement again, so it looks like he was right, & it's the other way around (zithromax boosting the effects of the lomatium). Dang, these set backs are hard. We were finally seeing improvement after so long of everything making him worse, & then to lose it, argh! Our appt with the LLMD in Louisiana is this Monday so hopefully we'll be able to get back on track. [in the meantime, United Healthcare is contesting coverage of the 2 treatments as 'diagnosis inconsistent with clinical picture' (presumably because ds19 is a PITAND and they will only cooperate if it's strep) and they're currently arguing with the dr's office (who is out of the country on vacation right now). Anything I could or should do before we get smacked with a bill for $25K?]

Sorry for the delay in responding - we had to re-enroll for our health insurance yesterday. It's so fun trying to figure out whether or not to pay for maximum coverage. We went minimal this past year because we've worked outside of mainstream med for the most part all these years, & why pay for what you're not using, so we ended up losing what little was left of our financial breathing space between the neurologist, PANDAS exploration & now Lyme (& my DH's unexpected hospitalization in the midst of all this). Now we're going with the max coverage at a time when my DH's paycheck was already not meeting our expenses & yet we don't know if we will need it. Which would actually be a good thing, I know, but ugh, I wish I had a crystal ball! Anyway, sorry for the rant, I hope your daughter has continued to improve! Yes, my son was talking about his video game (& he has inherited his father's deep, carrying voice). He was so uptight about getting the ivig - I can't remember the last time I saw him so agitated. So I was joking around with him & trying to get his mind onto something else & ended up having him teach me how to play his videogame - which he enjoyed & I developed a headache from. My ds said he feels better for the ivig, his brain feels clearer, but his tics seem a little worse. He told me the tics that are more like routines he follows such as when he is sitting down at the table are a little less bad while the unpredictable ones that are triggered by a sound or something are a little worse. But that is actually where he was ~6 mos ago (only much, much worse) so I am thinking this may be Dr. K's "flipping back the pages". It makes me very grateful that we were able to gain some improvement with abx before we did the ivig! How is your dd responding?

This is a topic that really should be a sticky on a post with info about IVIG at the top of this forum, IMHO - so many of us ask it.

Wow, heatherdawn, we were there getting IVIG on Friday, too! I'm sorry we missed the chance to meet each other! My ds18 got 1gm/kg infusion over a 4hr period - I wish we could have done it over 6 - 8 hrs as that's said to cause less of these side effects. The headache began Saturday around 4 or 5pm. By midnite, he had thrown up. He looked awful this morning & wasn't sure if he was done being sick, but slowly improved as the day went on & believes he will actually be up for doing his tae kwon do class Monday afternoon. I had him drinking plenty of water, plus started him on benadryl & ibuprofen the night before & have tried to keep him on it ~every 4 - 6 hrs since. I searched the Lyme & PANDAS forums for ideas of things to help him & noticed this mom's recent post - http://www.latitudes.org/forums/index.php?showtopic=13380&st=0&p=111044&hl=+ivig%20+headache%20+alka%20+seltzer&fromsearch=1entry111044 Seems detox can be really important for getting relief, though there were a few other posts that came up in my search where their child was given a migraine med that helped alleviate their headache. Hope your dd is feeling better, but if not, hope you can find something helpful for your dd in this! Dr. R did say to call his office if the side effects were bad.

I've got to second Michael on this. We all know the old axiom of doctors that reminds them they are supposed to be treating patients not lab tests, but somewhere along the way, many of them seem to have forgotten it. How bizarre is it that a patient would present with symptoms consistent with Lyme & a positive test to boot & the doctor would re-test because they cannot accept the possibility? That kind of close-minded clinical thinking is too scary; frankly, Lyme or not, I would not return to a doctor like that. Reporting of Lyme is not mandatory so the numbers are much higher than those given. And it's not like Lyme has stayed in CT (or that it was exclusive to that area to begin with). Why is it so hard for doctors to accept the high probability that it is not staying put in so-called endemic areas?

Talk about down to the wire! Dr. R agreed to do 1gm/kg IVIG for ds18 tomorrow, but had to see if Gammunex could be overnighted to the office as he didn't have enough on hand for that. Just got off the phone about 40 min ago with the confirmation that they can get it & we are on for driving to Dallas in the am. IVIG will be around noon to 1pm till 6pm'ish - I hope that's a long enough infusion time not to be a problem. Now my mind is going nuts trying to remember what is recommended. Plenty of water - I remembered that & began him drinking extra this afternoon. Should he start on ibuprofen & benadryl today or tomorrow morning or just have them on hand for afterward? Should I ask for a steroid Rx for afterward - if so, for a week or two, what's the norm? Any other advice? ~Grace

Michael, have you written a chronicle of your treatments anywhere? You seem to have done & tried so much & acquired so much knowledge - that would be a history I'm sure many of us would value! ~Grace

Argh! Is there nothing easy in dealing with this @#%*? Finally got a call back & the dr said he's planning to do a 20 - 25 gm (most likely 20 per the nurse) infusion over 4hr & no recommendations for prep like benadryl or ibuprofen or steroids cuz he doesn't anticipate side effects. DS18 is 147lbs so that's definitely low dose. I do not know why the dr is going so conservative esp. since he normally uses Dr. K's protocol. That can't be because of the insurance because I am seeing recommended dosages much higher than that. I am thinking of just canceling the IVIG till we see the LLMD, but I did call back & left a message that I am concerned that the dose is too low to achieve suppression of the autoimmune process based on the dosing protocols I've been looking at, asked if we could try to get Dr. K's protocol approved or at least do Dr. T's 1-1.5g/kg over 6-8hr. I am hoping that we can still work something out. Any advice?

Our treatments for our ds have really been handicapped by his many issues. Dr R feels that ds most likely has a lot of brain inflammation right now that needs to be brought down before we will see any more improvement. The reason I am pushing for the IVIG now is not just because our deductibles restart in June, but esp. in hopes that it will help bring ds back enough that we can try more & have more options available to us. My concern is that the single infusion won't be big enough to help. We can't afford to waste the money or the opportunity we have here. The receptionist is supposed to call me back with more info about dosing & any prep we should do, but right now we are set up for a Friday afternoon IVIG over a 4 hr period. That does not sound like it will be enough particularly given that my ds is 18 - about to turn 19 in May! I am considering pushing for the 2-day HD treatment that Dr. K advocates. I realize that I am tossing the dice here, but Dr. Burrascano - who I realize is not the last word on Lyme, but still seems to be more worthy of consideration than most - advocates IVIG for Lyme patients to help repair neuron damage. He retired from practice to do research, but he still presents at the ILADS conferences & at the 2009 conference stated that "IVIG plays a much bigger role than ever expected" & again in a 2010 talk regarding chronic Lyme, "If neurologic symptoms do not clear, there is the option to treat with IVIG". We are most definitely candidates for the "neurologic symptoms that do not clear" award, so I am hoping & praying that this might give us the boost we need. So, acquiesce to the single dose without resistance or try for the 2-day?

Those of you with United Healthcare - did you get a single dose infusion or Dr K's 2-day HD infusion? Did you need to get approval for the 2-day HD or get any kind of flack from them for it? After all the experiences that I have read on this forum, esp since my ds is 18, I am inclined to push for Dr K's, but I don't know if or how hard I will have to fight for it.

Dr. R is continuing to treat our ds18 until we are able to see our new LLMD on June 20th. Our ds is negative for strep (FWIW), possible for myco, & positive for Lyme. Previous attempts to use augmentin & later doxycycline led to stomach upset He is currently doing fairly well on zithromax, zoloft & an herb called lomatium (which seems to have helped reduce our allergies this year - yay!) I would say maybe 10% improvement? Perhaps more, but definitely less than 25%, though we are so grateful for ANY improvement at this point. Our insurance starts new deductibles on June 1st, so Dr. R added Omnicef that we just started last night, & then has offered to do an IVIG infusion this Wed & another in a month. He said that United Healthcare does not require pre-auth for IVIG with a PANDAS dx, BUT that he is more likely to get flack & we're more likely to have to fight with them if he uses Dr. K's HD 2-day infusion. Should we go ahead with the 1 infusion (I believe he said over a 6hr period) 2 months in a row or is it worth fighting with UHC to do the 2-day Dr. K version? He also wants to try short-term steroids to bring ds's inflammation down. Since ds is on abx that are effective treatments for Lyme, should we consider it?

In the book "Cure Unknown", it discusses how there are a number of different types of borrelia. One researcher came up with 20 (if I'm remembering right, but that's close, I believe) and found that 4 seemed to be particularly virulent to humans. Northern borrelia seems to cause more severe problems than the southern varieties. The microbe has an impressive ability to mutate. Using the term "endemic areas" seems so misleading anymore since there is no mandatory reporting & everyone agrees that Lyme is significantly under-reported. If reporting were mandatory, I'm pretty certain that Missouri would be a hotspot, too. It is bizarre for anyone to think that CT Lyme is not travelling - esp since researchers believe that it was imported here from Europe. We live in a part of TX that is a major migratory pathway for birds. People actually come from across the country to birdwatch here. The birds carry ticks. They also get bit by ticks up north, then come down to the south with the diseases that were transmitted, and then get bit by ticks here and so on. I'd be shocked if there were not some variety that was endemic here as well. "Cure Unknown" talks about how the specificity of the tests is a major reason for the false negatives - because borrelia is not only capable of changing its outer proteins, but comes in so many different "varieties". So while it is certainly possible that it is some other gram negative bacteria causing the response, the above information inclines me to believe that it is most likely due to a different form of borrelia lighting up only one or two or possibly even no bands.