EmersonAilidh
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Posts posted by EmersonAilidh
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Definitely sounds like a herx to me! For the soreness try Epsom Salt baths, a heated blanket, & a "comfort bag". They're these cloth bags filled with rice, flax, or grains that carry heat (or cold) like nobody's business, can be wrapped around your neck, & are a whole lot more portable than blankets!
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My symptoms are extremely physical so your son very well might experience something totally different, but herxing for me was just a huge blob of malaise. I sat in our recliner in the living room & couldn't be bothered to move. Not for laziness but you just feel SO exhausted & weary & fatigued. The brainfog also got pretty intense but that very well may have been my TLE. one week in was the low point for me but I was on a whole lot more antibiotics than that.
Does your son have a lot of history with Strep? I only ask cos I'm completely & totally resistant to Amox by now, not to mention most Cillin's. Does your doc us ART testing?
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I'm not familiar with Dr. K's protocol but my LLMD, who specializes in Infectious Disease, put me on 500mg of Alinia twice a day for three days & then had me repeat the little regimen two weeks later. He said it wasn't as effective to be on it for any extended period. I'm 5'4" & about 95 pounds, so while I'm nowhere near your DAUGHTER'S size I am still really small for my height & age & I experienced no problems with the full dose. I understand what's already been said about the liability though & always recommend Canadian pharmacies!
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I don't doubt for a second that Lyme can & does suppress immune system function but it's kind of a "Which came first ; the chicken or the egg?" thing for me. Does my immune system suck because I have Lyme or did I get Lyme because my immune system sucks? Personally I lean towards the latter since I have always been a very sickly kid, but it got worlds worse when the Lyme came into play. I think there is an underlying immune issue, be it deficiency, suppression, or whatever, in PITAND, Lyme, & even some Autism.
Your other comment reminds me of what my immunologist said to me when I told him I was on Lyme treatment ~ "Well, what point is there in waging war when you don't have your soldiers?" he didn't think that we shouldn't be treating the Lyme but he thought we would be wasting valuable time & money by ignoring potential underlying causes & possibly turning around from Lyme treatment just to catch something else. Besides MY doctor obviously, where would be a good place to search for information pertaining to immunodefficencies & things like that? Because at this point we're both scratching our heads, unsure of what to check for next...
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I am labeled "immunosuppressed", not "immunodefficient". I have no idea whether or not that matters but felt that it Beared mentioning, haha. We know that I am shedding vaccines, not fighting viruses at all, & that my suppressor T cells are functioning at half capacity. I have a LOT of abnormal immuno lab work stuck with a magnet to my fridge, but my immunologist is currently on vacation in India so we have not gotten to disuss the vast majority of it as of yet. I just know that all my numbers that should be high are low & vice versa.
Valtrex helped my mood, disposition, & overall feeling. My shoulders didn't hurt as badly, I had seemingly boundless energy, & I am MUCH less irritable. The OCD has increased but I don't think that it's necessarily attributable to the Valtrex.
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Ever since reading & The Band Played On by Randy Shilts I've felt a need to get out there & help with my community's AIDS programs. DFW is a fairly large urban area so we have multiple options but I wanted to run this by my cyberfamily first seeing as how I don't know any other immunosuppressed kids personally. I'm going up to the first center on Sunday so obviously I'll be asking them all of these questions as well, but I didn't want to leave any stone unturned & figured coming on here couldn't hurt.
If you know me, you probably know why my Mom has given me the affectionate monicker of "Carrier Monkey". Yes, I get infections very often but rarely if ever are they casually transmissible save for strep, which I haven't tested positive for in nearly two years. It's not as if I could give someone infected with HIV PITAND or Lyme or any of the other smaller, weirder infections I tend to come across. So my question is basically this; could either of us pose a risk to eachother? I know that AIDS patients, around here at least, don't want to pseudo-quarantine themselves & for the most part acknowledge that stepping outside means risking infection. If I've never gotten anything that couldn't be prevented from being transmitted (no sharing drinks, etc..) before, should I be wary of possibly getting someone sick? & on the flip side of that, although my immune state obviously doesn't even begin to compare to that of an AIDS patient is there cause to worry that I could catch an infection like Pneumocystis from them?
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When I saw my first ENT about the mystery throat infection a couple of weeks back he immediately ordered my tonsils & adenoids out but agreed to wait for my virus panel to come back before we scheduled it. He said it didn't matter, but it was important to me to figure out whether or not it was Strep or Mono. Well, keep testing all kinds of negative for strep but tested positive first try for EBV recently. Guess that answers that question.
Since I know quite a few people on here or their children have had them I thought I would ask you guys first since you know it from a P.A.N.D.A.S. Angle. For immunosuppressed kids like myself who get infections one right after the other, does the procedure make a difference? Is it worth it? I've had three surgeries before so I'm not scared but I'd certainly rather not go through it if it's unnecessary. I just saw someone post about an INTRACELLULAR one.. What is that? How many different kinds are there?
Obviously I don't know much so any information at all would be appreciated!
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I've had my iPhone since January but I've also had a computer to go with it up until a couple months ago. It started acting up, then just crapper out, & now my phone is my only Internet source. Definitely not complaining because the forum isn't all that bad on Safari (typing can be more difficult though) but has anyone had any success with the IP.Board Communities app? I keep getting a 404 error message for this forum even though I've tried again & again.
On that same note, I wanted to recommend GlutenFreed. It's basically the "UrbanSpoon" app for Celiac's! It's been great to me. Has anyone tried the CeliacFeed one though? Because it won't work for me.
Sorry for how superficial this post is, but I would really really like to be on here more often. :/
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I posted a bit about all of my immunoassays on here but I got more done & you can bet those all came back just as colorful. Super positive for Rubella & HHV6, positive for EBV, negative for CMV. My cell counts (NKCs, suppressors, etc...) were all fine but on the very low end. The NKC interval was 80 to 400 & I had 87. My Absolute CD 3 & Absolute CD 4 Helpers were sky-high, RBCs were low (no surprise there, I've always been barely anemic) as well as MCHCs (i don't even know what those are..). Lymphs & MCVs were also both high, although once again I don't know what the latter is. Candida count was 2041, which is class one & fine.
Today I also found out I have MRSA. I get ingrown hairs all the time so I didn't think twice about a little bump that appeared on my left leg about a month ago. Yesterday when I started picking at it got red, sprouted a little worm looking projection, & became really painful. By the time I showered a few hours later it was almost the size of a golfball, almost rock hard, & EXCRUCIATINGLY painful. As soon as I stepped out of the shower it burst, spewing white pus, clear pus, & blood. I drained it so many times but it just kept getting bigger, harder, & seemed to be an infinite pit of nastiness. When we put Peroxide on it it turned white. This morning it was probably the size of a baseball, hard but not draining, & not AS painful. The doctor said it's MRSA even though we couldn't get it to drain so now I can add Bactrim ointment & pills to my never-ending list of meds. She gave me lots of refills for the ointment, told me to put it on every possible cut, scrape, or abrasion & is also making my Mom & stepdad use it in their noses.
Rao isn't back from his vacation in India so we have yet to discuss all of my results (he did prescribe Valtrex for the HHV6 though, which has made a HUGE difference!!!). PITANDS Moms & patients, Lyme Moms & patients, I pose the impossible question... WHAT IS WRONG WITH OUR IMMUNE SYSTEMS?! & Can anyone help me interpret my results?
Also, sorry I have been a stranger as of late. We have no working computer & getting on here on my phone is frustrating & not easy.
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After finding my other immunoabnormalities (namely suppressor cells functioning at half capacity & shedding vaccines) Rao ran a virus panel. He called back today (is currently on vacation in India) to tell me that I rang "very positive" for HHV6. DIdn't mention whether or not it was the A or B variant. He didn't say whether or not the others (CMV, EBV, HTLV-2) were positive but he did mention that my Candidiasis numbers were perfectly fine. He called in Valtrex for me (Guess he figured "Hey, what's one more pill?") that I have yet to begin but I just wanted to ask if anyone on here had any strange virus findings.
Also wanted to throw something out there. I knew that HHV6 was linked to Myalgic Encephalomyelitis but had no idea that it was also associated with other chronic neurological disorders like Multiple Sclerosis & Mesial Temporal Lobe Epliepsy, among other things. TLE is what my EEG showed in November of 2009.
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This is the first time we have had a district-wide exemption policy for finals in our district, normally each school has it's own criteria & normally my school doesn't count excused absences at all. But on this new, official MISD exemption policy form it says....
"Students may not have more than one excused absence in the class they wish to exempt, even if they are excused by a doctor's note."
Uh. Come again?! This also requires a little background on my district's stupid absence policy. If you miss more than 20 minutes of your 90 minute class... You're automatically absent. So if I have an appointment at 9:45, get out at 11:30, get back into town at about 1...... I've been counted absent the entire day. BUT, you aren't allowed to have all day medical absences! Nope. Not if you get Serotonin Syndrome & are stuck in the ER all day, not if you have an MSLT scheduled months in advance, & certainly not if your doctor is three states over & you fly there & back in twelve hours just to miss as little school as possible. If you show up to 20 minutes of either your first or fourth period classes you won't be counted present but your absences will be coded medical. If you're being held in the local pediatric hospital for 24 hours though, sucks for you. That absence isn't "M" but "E:DN" (excused with doctor's note).
My district isn't allowing kids who have all day medical absences more than once a semester to get exemptions by counting these "E:DN" absences & not the "M" ones. Obviously I don't think the M absences should be counted either, but what sense does this make? Who is going to have more than one of those absences per semester but a disabled kid? They gave us this form the day before finals week so I know I won't be able to get this solved in time, but it's not so much about me not wanting to take my finals as it is me just not being okay with this. We're not allowed to have unexcused absences, which motivates people not to skip class. What message are they trying to send by penalizing us for doctor's note absences? That it's not okay to be sick? Sorry I didn't run that by you first, I should have been more considerate.
We also have a very strict absence failing policy. If you get over four absences that are any kind of "E" (including E:DN but not M), you automatically fail whatever class they are in. If you want to pass the class, you have to stay in after school detention for two hours to make up a single absence. What am I supposed to do about this? The problem isn't my counselor, he's completely supportive, this is up at the district level & I just don't even know where to begin. I am NOT okay with being denied the same opportunities as my friends who don't have to see the doctor as often as I do & I am NOT okay with being punished for having a disease I have no control over!!!
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These past few days I've been noticing a lot of joint pain, but only in my joints that don't normally hurt. Elbows, wrists, knees, etc... Just that slow, dull, constant radiating kinda pain. I didn't think much of it cos it didn't touch my shoulders or my hips, which are my two biggest problem areas.
Well, lo & behold. I was up until 12:30 last night working on a project. When I woke up this morning at 5:30, it wasn't because of my alarm but because my hips hurt so. Freaking. Bad. It's not anything dull, it's sharp, on BOTH sides, & towards the back of each hip. Almost near the buttock. It's to the point where I can hardly walk. Never in my life have I ever once felt a pain this bad & I have no idea what this is about.
I wondered why my shoulders were okay & decided to touch them (which is normally all kinds of off limits) only to discover that they were just as bad. Only when touched though.
Has anyone experienced this? Any advice? Please. SOS.
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It was on sale at Central Market so I got four bottles for under $10 over the weekend. One of those "Might as well" moments, I suppose. Just wondering if anyone has any feedback on it. I have two flavors of Helios & two flavors of regular but I've only started the regular peach. It just seems kind of counterproductive since it's a probiotic... with sugar in it. Anyone have experience with it?
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Got to watch Dr. Rao chew out a Hawthorn drug rep trying to push Abilify for his Autistic patients. It was pretty entertaining.
My Suppressor T Cells are functioning at half capacity. My T Cell counts were all fine, they're all just lazy. My Rubella count was 83, which is especially confusing since there's no carrier status for that virus, it's supposed to take all of three days to clear, & my Mumps/Measles counts (yes, I got the dreaded MMR) were both fine. I also totally lost my Diphtheria vaccine & barely have any of my Polio vaccine left.
My NKC count was pretty surprising at 87. All of my IgG subclasses were within the "Reference interval". Everything besides the suppressor cell function & the weird vaccines was technically fine but just in the really low range. For example, the RBC interval was 3.9-5.3 & my count was 4.1. Everything was like that. Really, really low but not low enough.
When he read the suppressor cells I could see a little lightbulb go off in his head. "We need to test you for EBV, CMV, HHV6, & [another virus I can't remember but I think was HTLV2]!" He mentioned Chronic Fatigue Syndrome briefly but I had already caught on. I let him know as respectfully as possible that I didn't care how many immune abberations came back, how many viruses we found, or if we discovered "CFIDS" written on all of my cells... I wouldn't be going down that road. Having already dealt with Lyme & P.A.N.D.A.S. (not to mention JUST having finished Osler's Web two days ago), there's just no way I'll be committing to myself to perhaps the most perilous condition to find treatment for today. I'll be interested in seeing how they come back though. I'm almost positive that the EBV will be pretty astronomical, seeing as how I'm pretty sure I have Mono as I type this. As for the others, no idea.
What immune problems have y'all seen in your kids? & when exactly does one get labeled "immunodeficient"? We're waiting for the results of today's tests, which also included Candida, before pursuing or even discussing any additional treatments but he told me he'd be willing to give me antivirals.
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Wow, I am horrible!!! We decided to nip it in the bud & schedule an appointment with an ENT, which is tommorrow. So of course it went away yesterday. But aha, stupid whiteness, we snapped photos of you just in case! I'm really leaning towards EBV at this point but I'm about to make another post about all of that.
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We have done EEG's and MRI'S
What do the other brain tests show??? Would they be helpful??? for a kid that sits in front of a TV all day long with severe OCD. She is not looking 2 good on the steroid. Doc. took her off Abx. cause it kept her up til 6am.
Man, I am not sure what else to try. We are scheduled 4 IVIG, but if the steroids didn't work....not sure that will have any effect.
MRI is better than a CAT scan as far as the brain is concerned. They both have their niches, i.e. the CAT scan is better for lungs, but MRI's the way to go between those two if you're talking about P.A.N.D.A.S. My last MRI was in 2006 & came back normal. Did yours show anything? What about the EEG? SPECT scan shows blood flow to the brain, which is especially important when picking out specific areas of concern. It can show if you're getting decreased oxygen to the Temporal Lobe, Cerebellum, or in P.A.N.D.A.S. case Basal Ganglia. I don't think I've heard of anyone on here doing that one but it sounds like it could be helpful. I've heard quite a bit about PET scans on here but I've never had one myself. There are probably others who will chime in that know a lot more than I do about that one.
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I don't think it's yeast/thrush/Candida/whateverelse it's called. They're distinct little pockets, can't feel anything when I swallow, there's nothing on my tongue, & it got BETTER with antibiotics last time. Would have done the opposite if it was yeast.
Don't think it's strep either since it was negative on three rapids & one culture last time around. I usually have NO problem getting positives. I'm still gonna ask for them when I go to the pediatrician tomorrow though. The nurse practitioner there makes no qualms about being fascinated by me, hahaha. If it comes back positive I will be sure to ask for Clindamycin! Also, if this IS freaking strep I'm finally just going to ask for at least a tonsillectomy, probably an adenoidectomy too.
I will definitely ask about EBV/Mono! I haven't been thinking about viruses since it cleared with the Suprax, but I guess that would make sense if it flared & would also explain why the two courses of Azith didn't make a dent in it. I'm not any antivirals, either.
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I don't want to type it all out again, but I just posted about this on the P.A.N.D.A.S. board. My mystery throat infection has returned. What could POSSIBLY survive two 5 day courses of 250mg Azith, 10 days of 800mg Suprax, & ALL of my Lyme stuff?! (Doxy, Omnicef, Mepron, 500mg Azith, & more...)
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ThenMama ~ Thank you!
Sarah ~ high school in my district goes from 7AM - 2:30PM. I'd rather come late than leave early! He was like "Well, we can see you tomorrow!" Um, excuse me? We're in the emergency room NOW. I didn't go off it. I kept the half dose for a few more days & then doubled it again with no bad results this time. Yay!
Denise ~ I really don't want Home-Bound unless I absolutely have to. Plus, school is reaaaalllllyyy easy at the end of the year. All we're doing is watching movies, haha. Plus, I don't think I can do my Health Science class home-bound since it's through a separate technical school.
TRG Girl ~ Thank you too.
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Getting an infection while on this many antibiotics should literally be impossible. Oh my God. But leave it to me, I suppose.
A little background is required for this one. Skip to the end if you already know why this is significant.
Okay. Positive for strep from birth to 14yo. Completely stopped getting symptoms at 7, but my pediatrician knew to always swab anyway & sure enough, I was ALWAYS positive. Octoberish this past year I started waking up in the middle of the night with gut wrenching stomachaches. I thought it was weird but didn't connect it to strep until I woke up one morning & my throat was hurting. Still didn't really make the strep connection because, well, when I got strep my throat never hurt! Went to CareNow anyway where they, of course, told me I had an upper respiratory infection (it's so cool how they can tell that by just looking at you no matter what your symptoms are, isn't it?) & gave me a five day course of 250mg Azith. Got MAYBE a few days of partial relief. Went back in December, I believe, where they said the same thing & gave me the same prescription. Except they called it "Z-Pack" this time. Guess they felt like shakin' it up a little bit. In January I finally just walked into my pediatrician's office where the only person available was the nurse practitioner. She did a rapid test, it came back negative, but she looked in my throat anyway & immediately went "Oh my God!". She pulled me into the physical therapy room (which has mirrors all over the walls) & showed me how to check my own throat, because you could just see all of the pus pockets in the back of my mouth. I even posted photos of it on here, haha. She gave me ten days of 800mg Suprax, which FINALLY did the trick. A few days later though the strep culture also came back negative, so we never figured out what it was...
Started feeling weird on Sunday after starting second round of treatment Saturday night. On Monday got Serotonin Syndrome, ended up in the ER, & just haven't been feeling quite right since... Today I woke up with a grueling headache, horrible hand tremors (which I chalk up to my antidepressants), & really bad facial twitches. Whenever I got home I figured "Why not?" & decided to look down my throat. Yup. You guessed it. Whatever it was, it's baaaaack.
What am I supposed to do about this?
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I was actually in a good mood this morning, which is pretty rare for me. Even had the energy to put my fake eyelashes on, haha. Started feeling a bit funny on the way to school but that's hardly anything new, much less cause for alarm.
Got to Algebra 2 late, sat down, & BAM. Hands were shaking too bad to hold a pencil. Couldn't even think through the simplest of the problems anyway. Gagging on nothing like I was gonna vomit. Couldn't breathe & felt like there was an elephant sitting on my chest. At first I just thought the Mepron was ticking off (Ha-ha... get it?) the Babesia & bringing the clamminess back because I was burning up, but beads of sweat started dripping from my face onto my paper & when I checked, my hair was wet with sweat.
Texted my Mom, bolted out of class (as well as you can "bolt" in that condition, that is), didn't make it to the nurse but ducked inside of a bathroom just in time to fall over. I've dealt with dizziness before (mostly really bad right as I stand up), but NOTHING like this. I was on the floor, clutching the toilet, & still couldn't stop swaying. I managed to get my head between my knees & stayed like that until I could manage to stand. Made it to the nurse, who measured my temperature at 98.1 (which confused even her), & left with my Mom a few minutes later.
Went to my pediatrician who opens at 8, but apparently doesn't get there until 9...? The only person there was one receptionist who told us to go to the ER, so we did. Turns out the emergency room in a hospital isn't exactly hoppin' at 8:15 on a Monday morning & I doubt a sixteen year old with chest pains would have to wait long otherwise anyway, so we got in quickly. Of course by this time I was starting to feel better. I mean, that's just how it works, right? They were already looking suspiciously at my list of medications (as was I) but they wanted to leave no stone unturned. My temperature was still 98.1 upon admission. Ran another EKG (second one since April 21st) which was identical to the other perfect one, tested blood for anemia, liver problems, & even pregnancy, haha. All came out fine. Tested urine for some other stuff too that was all negative. After a while they called it a "Near-Syncopal Episode" brought on by all the Serotonin from my Adderall & Celexa. We've been trying to get a hold of my psychiatrist but so far, no luck. Ugh. It's been a bad day.
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MinoCycline is similar & normally doesn't produce that reaction! I switched from Doxycycline to high-dose Azithromycin.
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I don't have time to post a proper reply but I am making a new post & promise I'll get back to this later. I just got out of the ER for Serotonin Syndrome. Go figure.
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I'm no pansy when it comes to meds. For Lyme treatment alone I've taken two liquid detoxes, which as you can problably imagine tasted WONDERFUL, & two tinctures that actually weren't all that bad. When I initially got put on antipsychotics I couldn't swallow pills & so I was taking liquid Risperdal multiple times a day. My point being... I'm no baby. I can make myself deal with some foul tasting stuff & have proven so on multiple occasions.
Took the Mepron last night, which really wasn't that bad. Just numbed my mouth & made me look like I had lost a fight with Big Bird. It was also really difficult making sure that I took it all since I measured it right but it was so thick that it just sat there when I was trying to take it. Eventually had to scoop it out with my finger, but whatever. Do whatcha gotta do.
The Para-A, on the other hand, was a different story entirely. First & foremost, I know better than to smell meds before trying to take them. Don't think that's ever turned out well for anyone. But this stuff looks like oil & reeks the second you open the cap, oh my God. Still, I put a little dropper into a bit of lemonade & tried to grit my teeth, but the second it hit my tongue my body was just like "Oh #### no" & in what has got to be the most automatic gag reflex I've ever seen I spit it out all over myself. Tried it once more with the same results. It's not even so much that I'm thinking "Oh. this tastes bad. I should get this out of my mouth," as it is my mouth just absolutely refusing to swallow it. What has helped you guys with this?
Doubt this one has been asked before...
in PANS / PANDAS (Lyme included)
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Sarah ~ I figured a desk job would be better than nothing! I am going up there tomorrow so I will comment this again. :3 that book made me SO angry. I would love to raid your library.
Jenbug ~ yeah, I'm just wondering about casually transmissible ones. I know the vast majority of What I get can't be passed on but I'll be sure to check with them. Thank you.