pixiesmommy

My husband teaches environmental studies and relayed a news story to me the other day about how they are putting something in the new energy efficient ones now that will cause them to burn out so you have to buy news ones because the companies figured out that if they last a lifetime, then the companies would lose a ton of money. I think that is just disgusting, honestly. But, of course, beside the point! We're so far off the beam here, if we get sensitive to light bulbs, we'll just light a kerosene lamp or a candle. But yes, fluorescent lights make us nuts here too- totally headache inducing.

Midwest- he practices in Illinois and Iowa

So too many red flags were popping up with our last dr, including today we realized that some of our paperwork was not even ours- he had handed us someone else's lab results!!!! Anyway, off to see Dr P today (recommended by Dabel, and recommended to her by IowaDawn) and he was great. Very up-front, no b.s. kind of guy, not arrogant at all and not trying to sell us 542 kinds of supplements or charge a fortune for possible hokey urine tests to be sent to who knows where. He did a quick neuro exam (touch your nose, etc.) and took a very thorough history (and listened! and typed in notes! and works on the Cunningham study with PANDAS/Lyme and knows what PANDAS IS!!!! YAY!!!) and then drew about 7 vials of blood or so to run 6 co-infections (which we had not tested for previously, or even had mentioned to us with the other dr.) Prescribed 500mg/Ammox 3x/day and 250mg/Azith 1x/day (she's 58 lbs) and said lets just keep it simple and start there. Only new advice I heard was NOT to give Florastor with the abx- he wants that 2 hours apart too. Base of 30 billion for probiotic intake (which we were doing, but just keeping that # in mind) and we'll go back in 4-6 weeks. We should have test results in 2 weeks for co-infections. I feel good about this- this feels better than our last dr and having he abx makes me feel some relief. HOPING!!!!!! *edited for misspellings... because I'm OCD like that.

I know you have been fighting hard for him. I am thinking of you and hope this is just the breakthrough you have been hoping for. ((((hugs)))) I'm here too if you need to call and just vent/cry, etc.

We survived the blizzard and power/heat stayed on. Dr K emailed us the next morning and told us to double her amox for 5 days. We are on Day 3 and she is soooo much better already with the additional abx. I'm on Day 3 of the 7 days of Azith and my throat feels better, but I have a terrible cold now, and my 3 yr old still has croup. If we don't feel better by Monday, I'm going to see if we have Mycoplasma. My lil one has had croup for 2 full weeks today and started with green snot today. I need to clear this, if at all possible, to prevent any more reactions!!

Cefdinir- still good and in capsules from a couple of months ago. I am allergic to that, but do have DH's Azith from awhile back that he lost and had to get refilled. It's 7 days worth and I can take that, which is a great idea, I think! Emailed Dr K and waiting to here back. Vicki- even if he called something in, we won't be able to get it til prob Thurs. due to the weather, and he absolutely won't call something in for me- we have asked before. She was pretty okay for the rest of the night, tiiiiired from the benadryl. I hope we don't lose power- it keeps flickering. That will just add fuel to the anxiety, etc. for her.

Pixie just had her first really big exacerbation "episode" since IVIG (well, and the 6-8 weeks following it.) She's been under the weather since before Christmas, but Dr K pulled her off Azith. She's on Amox 150mg/3x/day for Lyme treatment (with the dr we are no longer seeing, but we're still giving this to her in the meantime because... well.. I don't even know why at this point... to keep things at bay the best we can at this pt, I guess.) Anyway, I woke up with a rip roaring sore throat this morning and she had one of the best mornings EVER. Totally lucid and totally out of the blue since it had seemed like she was on a downward spiral. I knew I should be fearful, but in the past we have had an entire day of "good" before the "really bad." She just screamed and rolled on the floor for 45 minutes straight- some of which I tried to restrain her a little because it looked as though she was going to hit her head or hurt herself. She was clearly trying to speak but nothing was coming out but gibberish screams and grunts and whines- same as the days of old. She was very gentle with me- not trying to be at all aggressive or bite, which is totally changed from pre-IVIG for sure!! Thank goodness for that, at least!! She came out of it suddenly and asked me what was wrong when I asked her to take her temp and handed her some ibuprofen. She has no memory of it whatsoever. I dosed her with ibuprofen, a half dose of benadryl (afraid it would put her to sleep hours too early!!), oscillo, and the last Azith we had left from the beginning of Dec. I think I have a bottle of Cefdinir around here somewhere that we changed from. Thinking of emailing Dr K and asking if we should start her on it. I am almost certain *I* have strep- it feels like my throat is bleeding and infected. We're in the midst of a HUGE blizzard though and I can't get out to pick anything up!!! I'm going to encourage an epsom soak later too. What can I do for all of us????

My symptoms point to it and the dr we saw said 99% sure I did based on symptoms, but not labs. Labs were indeterminate and he was debating whether we should provoke. We are changing doctors due to some issues we are having with his protocol for Pixie. Hip pain cleared almost completely with diet change- real food only, no gluten, no sugar, no corn. It's been a year on this diet now and I have almost no hip pain ever.

My chiro adjusts my jaw each time we go and does cranial work too- that seems to help for awhile. Have you ever had teeth removed? I just found out I have "residual cysts" which is infection in my tissue now from teeth removed 10 and 20+ years ago!!! So I have been walking around with this infection all this time and had no idea. I have been diagnosed with sinus infections when it was really tooth-related. I wake up with terrible ear pain too and my ears are clear. Anyway, just some other things to think about.

Pixie gets knee pain when she is pos for strep. Don't have much exp. with hip pain other than myself. Mine got so bad a couple of years ago, that I had an x-ray and it showed bone spurs. Mine was very sudden onset. ????

She was already in bed when I posted, so it's not too late. She did make it to school this morning (I had DH stay home, since he is better at motivating her, and we felt she would feel more successful with him helping her out the door.) I do have oscillo in the house. I'm going to strive for an epsom salt bath this evening and try to get some activated charcoal or bentonite in her. And benadryl makes sense too- we always have that! Thanks!!! And DH is calling the new Lyme MD today. (Relief!!)

We think Pixie might be herxing from the ammox (250mg/3x/day)- This is ALL she is on right now. No supplements other than we give her a Vitamin D/fish oil supp 1x/day and a Florastor twice/day with the abx. She also takes about .25mg melatonin, which she doesn't seem to really need anyway anymore. She'll do Espom salt baths, but rarely. She'll take pills (tabs, gelcaps, etc)just fine, but won't do powders unless I can conceal it in a smoothie sometimes, but I dont have the freedom to do smoothies very often (mayyybe in the evenings.) Help? We're calling the new Lyme dr tomorrow, but I need something in her ASAP if possible.

Sometimes you have to take what you can get, I guess Look at the Naldol and see if it has acetaminophen- that could be making you worse if it's depleting your glutathione levels, which are usually low when you have Lyme anyway. Also, look up Gluten Ataxia. I was just reading about it last night (there is an awesome food allergy mag called Living Without) and I think a lot of us have symptoms that could be attributed to this too. I know you are already GF, but not sure how careful we all are about cross-contamination with cutting boards, utensils, etc. It's really scary to read the neuro stuff that can happen from "just" gluten alone, if you have the ataxia. Hang in there! I hope your Lyme visit goes well. Keep us in the loop! Manda

Thank you. That was really encouraging, and I definitely do need a pep talk! There is not a doubt in my mind that Pixie does have PANDAS/PITAND, because we do see her response, and the pattern in her life, to strep. I am frankly SHOCKED that IVIG helped her as much as it did, but then I think of all the things that we did that coincided with that time- specifically diet changes- that impacted those results too (IMO.) Strep is RAMPANT at her school right now, so she is obviously responding to that on top of whatever else is going on. My gut tells me that she is not "just" PANDAS. From what I have learned, things like to travel in packs and have these "relationships" with each other. Mold likes Mercury, and vice-versa. Strep is tied in there somehow, possibly to the mercury or to a parasite from, or something else entirely. Gluten factors in too, somehow, at least for us. I just keep thinking if we can "un-bind" some of these things, then we can "detox" whatever is going on. I know that is very simple way to put it, but that's how my mind makes it make sense, even if it's not the most scientific terms. I think we are going to start seeing a new Lyme doctor. We talked to Dabel (who got the recommendation from IowaDawn) and there is another LLMD in our area. There is just too much weirdness with the dr we had been seeing for us to feel trust with him and want to continue. We go back to the endocrinologist on Feb 1 to see if she really does have Addison's. I'm dying to know. I wish they would just read the results to me over the phone. I have no patience for these things- it feels like such a race against time for our health and sanity anyway.

It could be herxing. I will try to be more diligent about epsom salt baths-- provided I can get her into them. I think we are going to change doctors- apparently there is another in the area. I am totally emotionally and physically crashing. This same dr started me on thyroid meds for hypothyroidism, and I am totally bottoming out since starting them about 2 months ago. Looks like I will be off to the endocrinologist too. Something better give soon, because we are tapped out financially. DH and I talked last night and I basically told him I am about to give up on everything and just say, "Screw it. We're not getting any better from anything, so why keep struggling to afford it?" I know I'll feel differently in a few days when I get another small influx of energy, but for now, I am totally BLAH.

I was getting ready to update, but since this is back at the top, I will just put it here. Pixie actually has been out of school 2 days this week with extreme fatigue/mania, some growling (tic?) during play, short-temper, and just looking anxious, as well as back and knee pain, headache, sleep issues and white pimples along the side of her cheeks. All of this tells me she has strep again. I'm up against a wall at this point with the strep or lyme or whatever the heck is going on. I wrote this in a PM earlier and felt like I should just cut and paste it here too: I wish I had better news for you, but we haven't made any progress with the Lyme treatment. We did a bunch of expensive out-of-pocket testing (blood, urine, saliva) that all came back pretty questionable for both myself and Pixie. Pixie got a bunch of positives and double-positives on her Western Blot, however. She is on high doses abx (Amox 250mg) 3x/day now to treat the Lyme (for 3 months and then supposed to re-test,I assume with the Western Blot again) but she has strep again even on this dose. (We came to the Lyme board from the PANDAS board.) She and I are both supposed to be taking high doses of vitamin C (to tolerance) each day orally, but we can't tolerate more than 1 tsp. without being in the bathroom all day. The doctor won't see us again until we do a urine test for mold, which is $250/each. I am supposed to be going for 6 IV vitamin C sessions with him, but a friend of mine with cancer who is also very knowledgeable about these things (she has cancer, she cured her son of autism, and is a chiro who treats PANDAS kids...) said that that is really scary and to ask a lot of questions. The dr just brushed me off, so I'm really freaked out. Also, they take CASH ONLY for any IVs they do, which I think is shady and weird. (The insurance said it's totally covered, but I'm dubious- we've had them say that before and then deny us for something totally irrational like a nurse administering instead of a doctor himself or some other such coding, etc nonsense.) So right now we are just stumped. We're rapidly running out of money. The tests are so expensive that we aren't going to be able to do any treatment once we figure out what is going on. Oh, also, he ordered Saliva tests for cortisol to see if we had adrenal fatigue. Pixie's was pretty flat-lined, so he said Addison's and prescribed cortisol 3x/day. We went for a second opinion yesterday to a ped endocrinologist and he said that is not the test to do for Addison's, it is the test for Cushings (producing too much) and you have to repeat it at least 3x for Cushings, even. So now we have to do blood-work for Addison's with him. My head just spins, you know? Nothing is easy about this. No one can just say Yes, you have this, or No, you don't and then start treating you and tell you what kind of $$ you might spend or what kind of time-line you might be looking at. It all feels like one big secret. I'm just really down in the dumps about it all. We've invested a lot so far, and I realize it takes time, but we are going NOWHERE right now. What I really want is for someone to be honest with me and say, yes if you do have Lyme then here is something of the protocol and here is something of the expense. When I talk expense with this doctor, he just looks at us like we have 3 heads and says he doesn't do the billing. The billing person looks at us with pity and says she doesn't know either. How can they NOT know? When I go to the chiro to do alternative therapy there, they know EXACTLY- on the computer- immediately- what my benefits are, how much I have left, what all the codes are, etc. I'm ready to tear my hair out, can you tell?

I'm battling a terrible upper respiratory (flu?) thing right now, so bear with me if I am not clear, or short with my wording. -Not sure which sauna yet, but looking into it and hopefully can get one soon. We really need a two person since Pix won't go in alone (assuming we can get her in there at all... /sigh) -Calling Monday to a ped endocrinologist to see if we can get her in ASAP to run additional testing about the Addison's/adrenal stuff. I don't want to start dosing her with cortisol until I really educate myself, and I have read that the saliva testing can be questionable. Really, really stinks to have to put her through more appointments and more testing, but she is being a good sport so far. I don't know what I will do if they want to do an adrenal challenge on her (looks like there are some injections involved) because I don't want anything else put INTO her, especially an injection. So hard to know who and what to trust!!!! -Not sure about the CD57- I think they did that one and it was low for both of us. There was one test for immune function (this is the one, if I am remembering correctly) that was 60 for the lowest and I was 60 and Pixie was 22. I'll have to check the paperwork though to be sure if that is the one you're asking about. -Abx allergies- I'm anaphylactic to most of them. I can take Azith, but it and Cipro are the only 2 oral abx I can take without having a severe reaction. I was on abx for most of my childhood (probably saved me from PANDAS, but I have severe and lifelong candidiasis issues stemming from them) for acute and chronic sinusitis. I didn't get the sinusitis until after one particularly bad tick bite, BUT I did have repeated strep infections prior to that tick bite. Again, which came first? If we have congenital Lyme, then who knows how far back it goes. There are so many similarities in the health issues of my family members (particularly if you trace the maternal side back)- leaky gut and all that goes with that like eczema and psoriasis, some (I would say mild to moderate) psychiatric issues, thyroid issues, arthritis, chronic infections.... really makes you wonder. More later when I am more clear-headed and have paperwork in front of me!! I promise!

I didn't see this when it was up, but I hope you are okay. Please know that you are not alone in having a really bad year (or more than one) and we are here for you- here as in on the forum, on facebook, by email, by PM, and by phone. There are a great bunch of people here who want to virtually hold your hand through whatever it is that you are going through. I know because so many of them/you have held mine.

Today was our big LLMD appt- the results of Pixie's Western Blot test. She was positive on a lot of bands (Why do I always post late at night when I don't have the paperwork right here with me??)- something like 6 of them, and indeterminate on almost all the rest. Even the doctor seemed taken aback that there were so many positives on her. We're starting out on 125mg Amoxicillin 3x/day. She had also done the adrenal cortex saliva test (along with me) and her results were clearly Addison's disease. She has basically no adrenal function whatsoever. She'll be on cortisol also 3x/day for this. The only other things we are doing right now are Zyflamend for her back pain, oral high-dose vitamin C (to tolerance) and supposed to be trying to get a FARR infrared sauna installed in our home for the two of us. My results are still negative- even with the additional testing he ran. We're still thinking mine might be so chronic it isn't going to show up yet, but I'm so allergic to antibiotics that we (myself and the dr) are hesitant to try to draw it out through abx treatment. He also stated that he is not convinced that abx are the "cure" for Lyme like people make them out to be. I'm supposed to start high doses of oral C and IV vitamin C as well. I'm not on abx at all and may not ever be, sounds like. So here we are. PANDAS dx a little over a year ago (late Aug/early Sept 2009, and hdIVIG Sept 10/11, 2009, and now a positive Lyme dx Dec 2010. Hopefully we are slowly getting answers and making progress toward healing.

Oh gross. I woncer if I got mine from a tick bite or from eating sick meat. http://www.lymediseaseresource.com/wordpress/another-epidemic-bartonella-and-the-hideous-complications-with-chronic-lyme-disease/

We ran another IGENEX test for me. Not sure what it's called (I have the paper upstairs) but it's supposed to be more definitive. I'll post the name when I find the paper. I was just diagnosed at our last appt with HYPO thyroidism, which I have suspected for YEARS, but was just finally dx. I'm on 30 mg of Armour (compounded.) I'm on something like Day 11 now and feel a *little* more functional and clear-headed.

So it is still up in the air as to whether we absolutely have Lyme or not, but that is fodder for a different post... Meanwhile, the dr is suggesting that we purchase a FAR Infrared Sauna for home use, twice daily, for each of us, to help detox. Is anyone else using this protocol? I see it mentioned quite a bit online. Obviously, we are trying to get the most bang for our buck with everything health-related that we do. $2000 spent is $2000 spent, ya know? Experience w/these? Recommendations? Advice? ...... Thanks!

Pixie has had PANDAS since very soon after birth. Her first unexplained fever was when she was just days old, and she had her tonsils removed at age 4 1/2 and the ENT chastised me for the scarring, which he attributed to untreated strep. To my knowledge, she was never swabbed for strep, nor had a sore throat- only behavioral issues and allergy-like symptoms which the ped would dismiss. I had the worst tick bite of my life when I was 10- it had likely been on me for days. I didn't get a rash that I know of, but I have almost every Lyme symptom now, and they increased in severity with each pregnancy. My younger daughter, Peri, is also suspected PANDAS (we have our follow-up with Dr K next week for her.) We have our official dx appt with the LLMD on Thursday, but he has already told me that based on symptoms, he is 99% sure I have it, and it may be congenital because my mom AND grandmother AND great-grandmother all have/had symptoms as well. My mother is dx with Lupus, which he thinks is a misdiagnosis. I still totally believe in PANDAS, but I think there is a reason behind having PANDAS and Lyme is possibly at the root of it (for us.)

We aren't dairy-free anymore since we found out that we are okay with raw dairy. We do a little bit of pasteurized goat dairy, but mostly raw cow dairy from a farm near us- warm from the source when we get it! Otherwise, I love being someone's hero

It is funny how we are all connected. It's also sad that so many of us are fighting the same battles. When I went dairy-free 3 years ago, I didn't realize how many people could not tolerate dairy and it opened my eyes to that. Then, we went white sugar-free and gluten-free and introduced raw milk and I found a whole new community, and some were friends I already had, but I just reconnected with them and learned of their struggles. Same with PANDAS- I have at least 3 friends who have children with suspected PANDAS, which I think is A LOT considering I have a rather small circle of friends. Now Lyme... the more I read, the more I am convinced that it is just running rampant through so many people I know and that is why all of us have the intolerance to the things we do- the chronic allergies and infections, the psych issues, PANDAS, chronic fatigue, etc etc etc. It definitely IS full-circle.