SSS

For my dd, 7 now, she cried A LOT, seemed unhappy- car rides, bathroom fans, not a happy camper. My other 2 were happy babies. DD7 started having unexplained fevers as an infant- went to hospital for many tests- nothing. She seemed to have weak muscle tone- sat up late, never crawled, finally walked at 17 1/2 months old- and I worked with her all the time- Dr.'s all brushed me off. FWIW: My 5 year old dd I never breast fed- personal reasons- no idea I had Lyme- she is totally neuro typical with no issues. Neither one of my dd's has has many ear or other type infections while young- except dd7 got a wicked case of strep at age 2 1/2, it was horrible :-( I fully vaxed dd7- dd5 has had them all except none in the last 2 years- she is needing 1 more MMR and Dtap- I won't do them. I am too scared there is a possibility of setting something off.

Yeah, strange, right? But our Dr.'s office orders directly from the manufactor, passes it straight to us without mark-up, and when they called because my shipment was late, that is when they were directly told they stopped making 2 ml. The chain pharmacy I use in my town said their wholesaler has about 30 boxes left of 2 ml, 10 each per box. Said if they aren't going to make 2 ml anymore, these will probably go fast. It my sour mood yesterday, I just thought: Here are the Lyme folk getting screwed over again.

DS got 1 shot every week for 2 months, and has been doing them once every 2 weeks for the past 2 months. I have an appointment scheduled with the LLMD for Friday to see what next. Why do you need 2 shots? DS only gets one, and we were told to make sure it alternates cheeks each time :-) His Family Practice doc gives him the shots, because we are 3 hours away from the LLMD. **My LLMD orders the shots directly from the manufactor, and were just told last week they are no longer making the 2 ml shot- so I bought a box of 20 1 ml doses, to do each side, for 5 weeks. If I bought a higher dose (say 4 ml) and used 1/2, not sanitary enough even with the change of a needle. I did call around, some places do have stock left of the 2 ml doses, which I plan to buy in the next few weeks, so my next round will be each side 2x a week, at the 2 ml dose. I am assuming doses are based at Dr.'s discretion/weight. Not cheap, either. But I can't/won't do IV, and am under the impression this is the same/very comparable for getting across the blood brain barrier.

Thanks :-) I survived. My LLMD is only 35 minutes away, and my 5 year old didn't bat an eye, give her a snack, s'all good. The shots themselves didn't hurt nearly as much as I built it up, but left walking like a crab, shoving free ice packs down my pants. Oh God, you gotta laugh.

Well, I am on my way up to get my first two, that's right, I said TWO, one on each side, because the manufactor stopped making the one dose shot I need. Expressing my concern on getting jabbed with a huge needle on both sides 2x a week, I was told, oh, the glut is large, lots of room, etc. Well, there is not on my 102 pound a$$. Little cranky. Found another source for the one dose shot I need- but have already purchased these 2 shot at a time doses for the next 6 weeks. And, I have to take my 5 year old with me, be brave and smile. I started Tindamax for the first time- thought I was pretty cool, first 2 1/2 days I felt good, until my last dose on Sunday night- got sick. Since then (on my 4 days off) let's just say I've been frustrated, anxiety, poor me and blank Lyme disease. I guess I do this Bicillin/Tinadmax (and LLMD wants me to build 2 week on/ 2 week off schedule for Tindy) for the next 6 months or so--- I'm hoping this gets me over the Lyme part- *sigh* But the way I feel, methinks there is more Bartonella to tend to. Wish me luck, I have a lot of events with my 3 kids the next 2 months, what with school ending, a graduation, one starting weekly therapy. Thanks for letting me whine.

Well, if you are looking for outside opinions, here is mine: If she has an active clostrida (c. diff.) infection, this can absolutely cause aggression and mean behavior- and, can be very serious. If it is present, Flagyl or Vancomycin will be needed to clear it, and, with all the antibiotics she is on, along with known gut flora imbalances (clostrida) and I don't think your culterelle is going to cut it. I would go with a quality, high count, like custom probiotics, theralac, Klaire detox ther-biotic, and also add Florastar (sacc. B.) to try and keep the clostrida coming back. For high cholesterol, AND, for binding the toxins out of her body, I would try cholestrymine powder (prescription) Make sure bowels move 1-2 times a day. My .02 cents--

How is her diet? Yeast, or clostrida possible? What do you have her doing for detox?

Hi- from what I understand, it is pretty rare. I have heard of people treating a TBI, then later test for Lyme, and that's when the Lyme test turns positive. For me, I had a full Igenex Western Blot, and co-infection antibody test. My Bartonella came back very high positive, but the Lyme WB, although with some Lyme only bands showing positive, was deemed negative, I went on to do the Lyme PCR test, where they do smears of the blood, and the Lyme was clearly there, so that came back 100% positive for the Lyme. I guess you could get Bartonella from an infected cat (I have my own story about trying to tame wild, feral kittens 14 years ago, being scratched and bit) but also was a hiker my whole life. Babesia is now in the blood supply- people needing blood, transfusions, could get that disease this way now. Saw your post about your other test, sorry, not familiar at all with that one- looks like a lot of us are also not that familiar with it to answer your questions about it...

I would add a digestive enzyme- we use Trienza, made by Houston Enzymes, it is a broad spectrum enzyme, that has DPP IV, which helps breakdown gluten, casein, soy. There are many other brands out there, too-

I was told by our Dr. that all of the donor antibodies from IVIG completely leave the body in 4-6 weeks- So testing 8 weeks post IVIG would be accurate, and like Bulldog, we waited a full 12 weeks post IVIG to do our further (Lyme and co.) testing.

I'm sorry, you have been through a lot :-( Are you saying you hold a job outside the home, also go to school, and have children ill? And yourself? Man almighty, that is a lot. All I can really offer is that yes, chronic fatigue has been a large part of my Lyme disease. Before it started progressing in me, I was a business executive in an extremely busy and stressful place- often on the phone from 7 am to 7 pm, I exercised regularly, and a Mom to 1 child (now 14). I was social, had some close IRL girlfriends. Over the years, looking back, I see how I started completely simplifying my life- quit my job 5 years back, I got anti-social, lost contacts- fun was something I couldn't seem to do- I didn't really want to go anywhere. I blamed it all on myself, I was a failure somehow, weak, getting old, lazy, not realizing I was plainly utterly exhausted ALL the time. And of course I had no clue I had chronic Lyme and Bartonella. You might want to have a full thyroid panel run, make sure all is okay there, B-12 and solid vitamins help, but lastly... If it is infection driven, like mine, it won't get better unless treated properly. Hang in there, sending you good thoughts---I understand.

The bad, disturbing dreams could be from Babesia. I started taking Trazadone about 5 years ago, right after I had my last child (and I think after that birth my Lyme and co. really started to hit me hard) I went to regular Dr. and said I CANNOT fall asleep at night, cannot turn my brain off, I am so full of anxiety. It does help me fall right asleep. But, it didn't keep me asleep all night, which is my own issue, again related to infections. But it did help me fall right asleep. No weird affects. Yes, I had tried time- released melatonin, had a bad experience with it, again, just me. My dd uses regular melatonin, works for her.

Do you know if this will also then exclude religious belief exemption? Trying to sign this petition, but it keeps blanking out on me, believe me, I will be trying all night (CA here) but I'd sign it for any other state. All I can say is Lord have mercy on the soul that tries to vaccinate one of my daughters with the Gardisil vaccine, without my consent, behind my back, probably using scare tatics or peer pressure to get them to take it. I am afraid to put in writing what I would do. My 14 year old son would know to say 'no freakin' way.' I still cannot believe our Governor signed that bill. Money grubbing so and so. Arg!!

I'm sorry, I think I'm losing my mind. I got your band 18 mixed up with 23. Yikes. Hope my soon to start Bicillin shots cross over into my brain something good! Good grief. My opinion still holds, tho, to see the LLMD. PV'S ----

I always feel like I'm the one who always speaks of the bloody p23, but Dedee, I understand where you are at- so I am going to offer my opinion - Keep the appointment with the LLMD. From my countless hours of obsessive reading: IgM can (and did for us) mean an active infection. There are some VERY notorious LLMD's that will say: positive p23 is the ringer for Lyme. Your IND lyme bacteria bands means they DID see something (some will say an IND is like a ballpoint pen, a *positive more of a marker). And you've got your 41's, which I know aren't only Lyme specific, but she got the flaggula. Anyway, I'm sorry. I know, I really get it, what you've been going through. I am not qualified to state, of course, it's Lyme! But in my opinion, I would keep the appointment with the LLMD, who will also be excellent at treating Myco. P.

I had my dd go through 10 months of Occupational Therapy for SPD (sensory processing disorder) when she was 3-4 years old. Insurance didn't pay, of course, because they don't think SPD is real unless you have an autism dx. I will fill out the survey, thanks.

Susan, I totally agree! I guess the extreme cases make for better television, but if I saw something like that before I knew I had lyme I would have been relieved and certain that I did not have it. I'm not paralyzed. I don't have seizures. I wish they had taken at least a few seconds to flash a list of some of the most common symptoms. Then again, I'm glad for the coverage at all. So it's a start. **Totally agree as well! I had thought about emailing my far away family about the show before it aired, but not being sure how it would go, I didn't. I can now imagine some of them thinking if they had watched: 'Well, does she really have Lyme?' I have never had a seizure, and have always been able to get out of bed. And I do not have severe body pain- to the extent of crying, or needing narcotics. And yes, I am 100% positive, PCR blood test, Lyme in the blood positive. Although, if you heard me speak, mixing up my words, my memory failing, maybe you'd just think I was going into Alzheimer's, at age 44, like I did. Also wish they would have flashed the symptoms on the television.

Yes, I was very glad to see it being discussed nationally... I thought it was very good. Apparently Dr. Phil said after the show he wished he had more time to go into the political controversy. For those that don't know, one of Dr. Phil's long time staff members who he has worked with and known for 10+ years, came down/fought chronic Lyme- which is why I think he did the show, learned about it.

Magnesium citrate is very good for constipation- I am a big believer in not letting your child get constipated- all that gunk and toxic stuff getting backed up causing issues = no good.

I got home in time to watch the whole Lyme portion of the program. I thought the segment was too short, and the ISDA guy was a MTHFR, and I don't mean the genetic condition. It shook me up something good, terribly scary for me, as a person with Lyme who also has a child with Lyme. Grateful for the national coverage.

Believe it or not, I don't have DVR, so I think I'm going to pull dd out of school 1/2 hour earlier so I don't miss any of it :-/ Not sure what my excuse will be.... hey, I've got a TV show to watch?

Which may not be popular or sound right on these types of forums, but you've all been so good to me, I want to be honest. Remember my post about violence and horrific verbal abuse, my family in shambles? Not a new event, sadly, but escalated to emergency status. This is the child that is literally perfect at school- beautiful report cards, behavior, never had a developmental delay. But the second she wakes up in the morning, and the very second she walks out the classroom, it starts. Her OAT came back, no clostrida. She has never had clostrida (c. diff) in all the multiple urine and stool tests I've done over the years. Yes, yeast is high, I knew this. No bad bacteria, probiotics good, everything good- just recommended CoQ10, some l-carnitine, said neurotransmitters were okay- and no detox issues- weird. We had a psy. evaluation today- DH, dd and I met with a brilliant Doctor (I know him, long story) he is a member of the 'Mind Institute', a premier research institute for chilhood disorders, etc. and does all the diagnosing in a large pediatric practice for autism, ADD, etc. He knows about our Lyme,, he does not treat Lyme. We told him all of it- what is happening, our family life, that we cannot go on like this ( daily violence and horrific verbal abuse) he asked questions in between, and said: I normally look for 6 bullet points out of 10 for this disorder, and you've already given me 9 out of 10. Oppositional Defiant Disorder. I can't really explain it -authority figure issues, what they are doing they don't think it's a big deal, he said it will go over into school, probably in the next couple of years, her teenage years (if never treated) a complete nightmare, etc. It fits her to a T. When I got home and read more. We are starting low dose Risperadol - very low dose, but the equally important, probably more important component, Cognitive Behavorial Therapy (which we have never done.) But we need the Risperadol to stop the train crash, help make the therapy more possible. He knows all the good childhood CBT therapists in the area, and the not so good ones. I am to bring him our insurance list so he can cross off, recommend. As for her Lyme disease, when I can get her stable (week or two, I hope) I am going to resume herbal tinctures gently- our Byron Whites, etc. see how that goes... Whether this came from Lyme in her brain, I don't know. But this is how we are going to try and come out of this crisis.

No joke, right? I swear when I first came to this board (and then spent hours reading all the back threads) I felt like we had been living like aliens, and at last had found the mother ship, our planet! Couldn't believe it. And I had been on other bio med boards for years.

I'm so sorry--it has been incredibly hard here, too-- PV's your way-- I just have it add: My very favorite (sarcasm!) is when I hear: 'Are you sure this isn't just a discipline issue?' I tell you what, that comment right there, makes me want to SCREAM.

I am so sorry you are going through this, talk about stressful! I tell you what, the whole mold issue just about put me over the edge, and we didn't have to move. I may not be popular with this, but after spending thousands of dollars, literally, and dd and I spending months on the CMS powder, (cholestrymine, sorry, wrong spelling I'm sure) And, we had done a mold inspection, found an issue under the the water heater in the garage we had correctly fixed, but nothing else in the house, and this guy looked into EVERYTHING, then my air samples came back clean (some of the cleanest, I was told) then others said the air samples didn't mean a darn thing, then did ERMI tests in dd's bedroom and mine, came back a 3 and a 4, called the ERMI company, got the Director, asked him what I should do: He said get some Hepa air filters, okay, bought 3 of those, already had a Hepa vacuum. I and dd had been on this CMS powder, multiple times a day, which pulls fats out, and we are both thin. I did not want to do it anymore. Our Dr. at the time wanted to continue, do thousands of dollars of more Shoemaker testing, and personally, I was not comfortable doing this protocol anymore with off label drugs. Also, it included pulsing some Lyme and Bartonella drugs that I didn't want to pulse but actually stay on to fight our infections, which is why I was there. THIS IS JUST MY OPINION, and how I felt. I felt deeply we had done enough of the mold issue (months, months) I voiced it more than once- I kept being pushed. We switched Doctors. I think detoxing the neurotoxins is very important, and obviously you don't want to stay in a toxic environment. Sound like you are renting, thank goodness. So I don't know about keeping your couch and leaving absolutely everything- old moldy books and things, yes. I was told you could wash all clothing, towels with Borax detergent (found at Target) 2x in hot water. I did replace a washing machine. This post may not be popular- for some, mold was really their whole main issue. I just felt I'd spent thousands of dollars already, it was not our main issue, and I had done a good job already. And my then Dr. had seemed to be a bit fanatical about it. Yes, we both have 1 'dreaded' gene, meaning we MAY not be able to detox mold and Lyme toxins well.