lmi1973

Dr. Beals in Stevensville, MD is awesome:) We see him primarily for Lyme treatment (drive all the way from Michigan once year to see him and do phone consults every couple of months for refills), but, he is very knowledgeable/open to pandas and very reasonably priced. Although, I wouldn't call him an expert (he is a lyme expert vs. pandas/pans), he is open to it and is very open to Rx'ing antibiotics/running bloodwork.

Thanks for the response, I think I will try it and see! I'm nervous for the herx, but, if it will help him, I know I should do it. I was nervous to give him the 1,000mg of the XR twice/day, but that has done wonders for him. My son has had tick-borne too - postiive anaplasma, suspected lyme and bartonella + myco-p.

Does anyone's child(ren) take Augmentin XR combined with Zithromax? My 12 yo son (approx 115 lbs) takes Aug XR 100mg BID, doctor wants to add in 250mg zithromax. Has anyone had success with or tried this combination before? My son does ok on the Aug XR so far, but, seems like a pretty hefty dose of antibiotics to be taking in/day. Thanks, Laura

So glad I saw this, this topic is really relevant to what I'm going through right now. I had contacted you, bigmighty, recently because my son had started a steroid taper like the one your son had, and his symptoms went way up (ocd ramped up, anxiety/insomnia). But, I realized mid last week that I had started slacking on giving the augmentin xr twice a day. when he is in school, I ended up giving him only one dose vs. two a day bc I wanted him to have probiotics in between. Once I made the correlation with the decrease in dosage and the deterioration in his behavior/ramp in ocd and anxiety I started to make sure that he was getting his full dose again and, sure enough, within about 5-6 days of taking his full dose, he is almost back to where he was before he went downhill. I was thinking the same thing, that ok, he must have some sort of infection still (maybe he does, although bloodwork is not showing anything right now), or, the augmentin xr is anti-inflammatory properties, but, now I wonder if it is somehow modulating the glutamate...? anyway, I am now going to make sure that he gets his full dose every day!!!

"In the hour long interview, the Dent docs claimed they tested these girls for Lyme, how could they miss that 2 were positive?" ----------- The Dent docs probably ran the standard western blot, which is notorious for false negatives. Dr. T was probably smart enough to have Igenex testing done. Also, many people sick with lyme disease do not meet the strict CDC guidelines. So, maybe the other girls also truly have lyme but don't meet the ridiculous CDC guidelines? Who knows... Thank God these girls are finally getting some basic medical treatment from Dr. T though.

Thank you so much! So grateful for this forum - it must be that my pharmacy didn't look into it enough, which doesn't surprise me.

My son is being treated for anaplasma, bartonella, lyme, and mycoplasma infections. For the past 5 months or so, he has been taking 250mg zithro once/day, 300mg rifampin once/day, 100mg minocycline twice/day, nizorol (prevent yeast infection). In addition, he takes lots of probiotics, various supplements, and pectasol to help chelate heavy metals. LLMD recently Rx'd bactrim as well (can't remember dose but 1/2 pill/day w/meals) which we just picked up from pharmacy and haven't started. Anyway, thought I remember reading that Dr. J preferred 150mg of Rifampin twice/day vs. 300mg once/day for bartonella, and my son's LLMD was willing to switch to 150 bid vs. 300mg once/day. But, he said when he tried to call this in for him, the pharmacist told him the lowest dose of Rifampin is 300 mg. and we found that it comes in a capsule so it can't be cut in half. LLMD said we could try doing 300mg twice/day, which is the adult dose of Rifampin, but that it might be a lot for my son. My son is 11 and weighs about 98 lbs. So, pretty close to adult weight. I'm just really scared of how hard this is going to be on his body/liver and wondering if anyone else has had their children on that high of dose? We do get blood tests done monthly to monitor liver and have had no issues so far. In general, my son is doing really well. But, he still has ocd issues that interfere w/his daily life. They are no where near what they were, but randomly come up throughout the day - like he has to pet the dog's ears a certain number of times, and he can't listen if both my husband and I tell him to do something at the same time - it has to be only one of us asking him, random stuff like that, that no one else would even notice if they were around him I don't think. But, I think he has more ocd thoughts than rituals these days. I mean, it's a huge improvement, but the ocd is still there. Physically, he also has terrible fatigue some days and when he is herxing, he has relentless insomnia and nighttime fears and in general, feels like crap. There has been so much other stuff going on - colds, loose teeth, etc. that his flare ups for things aren't as predictable as they were before, but the symptoms definitely come and go. He also gets traveling pains throughout his body, pain in his feet, "hot eyes", headaches once in awhile, and lots of upset stomach issues/lack of appetite. The stomach stuff I never know if it relates to all the meds though. But, right now I am just really on the fence about doubling the Rifampin dose and hoping some of you may have experience with this with your children? Any thoughts are welcome and appreciated. I'm a little scared to rock the boat so to speak. Just thinking about his ocd, realizing that another one of his ocd things went away recently too and know we are making progress. It seems slow, but, maybe slow and steady is the way to go? Thanks, Laura

tpotter (or anyone), how do you go about getting the iv antibiotics? My son is being treated for anaplasma, bartonella, lyme, mycoplasma w/: zithro, minocycline, rifampin, bactrim just added. Of course supplement with lots of probiotics, etc. and he is also on nizorol to prevent yeast infection. But, I worry about his stomach being permanently torn up with all of this. We see an LLMD locally in Michigan and also consult with one in Maryland. Neither have suggested iv antibiotics. The one in Maryland mentioned bicillin shots, but the other doctor said it would be way too painful for my son and didn't recommend. Can't imagine how much it would be out of pocket if insurance wouldn't cover.

This happens with my son too. He has two loose teeth right now, argh... One is like a molar that is taking forever to come out:(

I work with someone who found out she has severe food intolerances (not allergies) who had similar symptoms. She saw an ND (I think just means naturopath) who ran a blood test to see what foods weren't being digested properly. She found out she had an intolerance to soy, eggs, and something else - something to do with limiting fruits and processed sugar. Once she modified her diet she said her debilitating symptoms went away (she had the choking thing/unable to keep stuff down). What's weird is all of this suddenly came on after giving birth and I know I've read somewhere that sometimes women can have sudden onset of ocd after childbirth. Anyway, might be worth looking into. So sorry to hear you and your son are going through this and will pray for you.

So sorry to hear what a rough time your daughter is going through right now. My son has lyme, bartonella, anaplasma, mycoplasma and OCD. We don't see Dr. J - I've called a couple times and are still on a wait list to get an appt. scheduled. But, am I reading this right in that we are to add pscyh meds for OCD? I was always under the impression that the OCD would go away once the infections clear up? My son's OCD has gone down a LOT since being on antibiotics, but he still has enough that it interferes with his life on a daily basis. He was on prozac for a couple of months prior to the PITANDs diagnosis, and did terribly on that. His current LLMD does not recommend ssris b/c of all the possible side effects and poor results with infection triggered OCD. But, Dr. J is the king of pediatric lyme specialists and if his opinion is to add ssris, this would make me definitely reconsider trying them to try to find some relief for my son. Did he have any recommendations for which ssri for OCD?

My ds11 tried BEG spray also. It burned him so badly that I had to stop giving it to him. I did some more research on what could help with marcons (he tested positive for this last March & THREE ents said it was not an issue, grrrr...) Anyway, I read that Nasal Wash or Nasal Spray from supergoodstuff.com can help with clearing marcons so he's been on that for about 6 weeks now. It burns a little but nowhere near what the BEG spray did. BetterHealthGuy.com has some more information on this as well. He feels that clearing out marcons is an ongoing issue (see below) Did your son test low in MSH and VIP as well? My son tested low in both. I want to get the marcons cleared out so that I can get the VIP spray for him to try to increase these. From BetterHealthGuy.com: "Many of us are familiar with MARCoNS, the biotoxin forming nasal staph that Dr. Ritchie Shoemaker discusses in his books. I had done the swab for this over a year ago and had a positive test result. I did an RX nasal spray along with oral RX options to address the infection. The subsequent swab was negative. However, a year later, it was once again positive. Thus, my view on the issue of nasal microbes is starting to change to something along the lines of flossing our teeth. I'm not sure we can entirely and permanently eradicate every nasal microbe that may be another burden on our bodies. Thus, I'm alternating different antimicrobial nasal sprays and may pulse these over time. Currently, I'm using a mix of BioPure Phospholipid Exchange, Xylitol, Young Living Thieves Oil, Young Living Myrrh Oil, Quinton Hypertonic Marine Plasma and filtered water which I mix at home. Another variation that I use is to replace the Young Living Oils with Rizol Gamma. I just recently purchased the Nasal Wash from SuperGoodStuff.com and will have that as another option. Lastly, I'm starting to use a Neti Pot with different ingredients as well" Hope this helps, Laura

Thanks for the responses. I really needed those. Sometimes I can't think rationally in the middle of things. I definitely think he needs more detoxing. That was my other concern, like if (big if) they actually decided to help and treat him and not haul us both off to the looney bin, that they wouldn't know the right doses of antibiotics (or even the right antibiotics) and if he had a big herx that they would think it was an allergic reaction and try something else, etc. I will try getting ahold of his pediatrician and his specialist in MD. His pediatrician is new and overwhelmed, I was grateful he even took him on as a patient. He has no experience with lyme but said he would be willing to work with the LLMD and do whatever was recommended. You're right on the supplements, it might be too much for him. Now that I think of it, milk thistle was recently added maybe that is causing some bad effects. The 5HTP and Inositol, he's been on for about a month, so he was okay for at least a couple weeks using them (just at bedtime), but, maybe it's just an overload. He does seem to take more pills than what he eats some days and as much as I harass him, I can't get him to drink more fluids. He does drink a few gatorades throughout the day, but that's the best I can get him to do. Well, he seems happy for the moment (watching t.v.), going to get him into bath. Thanks for the input and prayers. Sincerely, Laura

I really need help right now. My son’s ocd is so bad that he’s been crying/hitting himself and whimpering over and over “please help me mama“. I thought he was possibly herxing again, but this is going on two weeks now and I don‘t know how much longer I can take helplessly watching him suffer. Some background - he is 10, going to be 11 in three weeks. He had sudden onset of ocd in the fall of 2010, was clinically diagnosed with pandas by dr. K in January, 2011, received ivig at the end of February, 2011. More bloodwork done in April showed mycoplasma (positive IgG and IgM) and anaplasma; at that time we were referred to LLMD. Has been on Amoxcillin 500mg 2x/day since the end of February (from Dr. K) and has been on minocycline since about May I think (was originally on doxycycline but had bad allergic reaction to it) Once he started lyme treatment (doxy and then minocycline), that was the first time we started to see improvement. His ocd really went down and we were at about 80%. I have started to see a pattern of herxing that seemed to be about every 4 weeks where his ocd and anxiety would skyrocket for a little over a week and then it would come back down. But, right now, he is so so bad and the increase in ocd and anxiety is going on two weeks. I don’t think he’s been exposed to anything. I have tried to keep everything as stress free as possible. I just don’t know what to do to help him. After three hours of watching him this morning not be able to get out of his bed b.c. he had to finish some ocd ritual in his head before he could, I started to consider taking him to the emergency room. The only reason I thought they might help us is because he does have some physical complaints as well. He complains of blurry vision frequently, constant upset stomach, and he also added that he can’t hear out of one of his ears sometimes, like it switches from ear to ear. The worst was that his hallucinations came back today… They had been gone for several weeks now. He has auditory hallucinations - he heard voices asking him what it’s like to live in more than one century today and other things that he said he didn’t understand or know how to answer. He has violent/disturbing “visions” that he normally won’t describe to me. I asked his Lyme doctor in Stevensville, MD the other day during our phone consultation if 1) we should/could try ssris to help him and 2) if people ever did IV antibiotics when psych symptoms were so bad. He said he would not recommend ssris because his body is so out of whack as it is and because there have been so many suicidal reports from them. As for the IV antibiotics, he said they wouldn’t do them unless the oral antibiotics stopped working and/or we had positive blood tests for lyme. We do have positive blood tests for mycoplasma and anaplasma, but the western blots came back negative twice. The Stevensville, MD doctor clinically diagnosed him with Lyme and Bartonella. But, I thought maybe it was possible that the ER doctors might help us since we had some positive bloodwork? I was ready to cry and beg the ER doctors to help, like please hook up an iv to him, but, the thought of them not helping and/or hauling him off to a mental institution stopped me - I turned the car around three times not able to make up my mind, then I just gave up and drove him home. Any advice/encouragement is appreciated. Specifically, has anyone done IV antibiotics? Has anyone seen their children’s ocd clear up once the infections have been properly treated? I am going to try to get him into his pediatrician tomorrow and just let him know how desperate we are, if there is anything he can do. I just don’t see how my son can heal when he is under constant enormous stress from the ocd and anxiety? p.s. In addition to the antibiotics, he is also on dilfucan for yeast and the following supplements: inositol, cats claw, magnesium, C, D, E, B6, B12, Folic Acid, lithium oratate, 5HTP, Gaba, omegas, flaxseed oil, and primrose oil. We do daily epsom salt baths for detox. We have gone gluten free and have given up caffeine. Okay, thanks for the shoulders… God Bless, Laura

What dose of inositol do you give? I've been giving my son about 5,000 mg for the past three weeks and haven't seen any improvement. We are at a real low with his ocd. He is pretty much unable to do anything without it bothering him right now. We too are on the brink of begging for any med, including psych, that might offer him some relief from this. They say to heal you need rest and low stress levels, which seems impossible for someone who suffers from severe ocd like this. He is much better in many areas and I'm praying this is a short bump in the road, although it's going on two weeks now:( He is currently on minocycline for anaplasma, mycoplasma, and lyme; amoxicillin for strep, dilfucan (for yeast), and was recently prescribed rimfampin for bartonella 5/7 days at bedtime, but, I haven't added that in b.c. he seems to be herxing so badly from the other stuff, I can't imagine it getting worse, or, will rimfampin make it better? Just unsure of adding another antibiotic when it doesn't seem like his body can detox well as it is (MSH = 17)

My husband is pushing to try SSRI's as well for my son's ocd as it really does interfere with all of our daily lives. ds10 is only two months into lyme treatment though and has a lot of health issues that I think warrant further time to see if treatment for them helps. He has heavy metal issues, marcons, low msh, and I'm currently looking into HPU/mold. I'm not completely against SSRI's, just feel like they treat the symptoms vs. the underlying health problems and have a lot of scary side effects, BUT, if the underlying health problems can take months-years to treat, I would be willing to try them if they could offer my son relief from his ocd. We've tried CB Therapy w/out success as my son's anxiety is too high to participate with any real success. His therapist (who also suffers from OCD) recommended anafranil and luvox combination for OCD, but, we have yet to go to psychiatrist to try these as he's in the middle of lyme treatment and I'm hopeful that it will help. I just started ds on inositol, 5HTP, Passion Flower, and GABA supplements hoping maybe these will have some positive effect on reducing the ocd and I'm considering adding in St. Johns Wort. I worry about the serotonin syndrome though and haven't added the SJW yet because I haven't had time to see if all of these things together could cause this.

Thanks for all the info. Julia! I'm so glad to hear your son is improving. Maybe I could keep the beg spray in a cool room vs. refrigeration and this would lessen the burning. I was wondering about getting an rx of bactroban too as I thought I read somewhere that this would help clear out staph in sinuses also. I will def. look into dvd from Dr. S and also the mold issue/discuss with son's LLMD. My son's biggest thing is OCD and I'm currently reading a lot about repairing the myelin sheath w/various supplements. But, Dr. Shoemaker/mold investigation is next on the to do list. Unfortunately, finances aren't the best with us right now so I'm really hoping we don't find mold, there is no way we could afford to remodel anything major right now. But, really no way to put a price on you child's health, so if we had to, I'm sure we would find a way to do it. We live in an old remodeled farmhouse that was built in 1860's so I'm guessing there could be mold issues here:( Plus, we have an old Michigan (cement/damp) basement that is super big/old yucky that I don't even know how we would attempt to fix if there are issues there, which I would have to think there are, yikes!

Thanks for sharing this. I live in MI and hadn't heard of this nutritionist before. My son has a lot of digestive complaints from all the abx, would love to try to treat this a little more naturally somehow. Son also has celiacs and have gone gluten free for two months now. His stomach is better, but, still a lot of upset stomach complaints.

Hi, we are in a dilemma as to how to treat the MARCONS now as my son seems to be unable to tolerate the BEG spray:(! ds's lyme doctor prescribed the BEG spray for his MARCONS and we received the spray last week. My son, who is 10 and weighs 80 lbs. said it burned terribly. He literally had tears streaming down his face after using it. It is cold/refrigerated, it's like he would spray it and then in about three seconds would start howling in pain, like a delayed reaction and he would just scream that it's burning! I was trying to have him spray once per nostril 2x/day, is this right? My LLMD and I were just guessing. I wonder if this needs to be dilluted for age/weight? LLMD just called the script into H. Drugs and it was directly shipped to us. I got him to do about 3 doses, but that's all. I don't know what to do to treat the MARCONS now because I basically talked the LLMD into prescribing the BEG spray. Any suggestions? Can we dilute the BEG spray? I read another mixture of xylitol and salt in the neti pot can help clear MARCONS, but my son said this hurts terribly too. He doesn't have a high pain tolerance, but, he's always been able to take flonase nasal sprays and regular neti pot solutions without complaint. Also, we got the MSH results back: 17; I want to have LLMD write script for VIP spray to increase this, but, it sounds like this isn't supposed to be used until MARCONS issues are resolved, which I'm not sure how to do now... I'm also scared that ds won't be able to tolerate the VIP spray like the BEG spray. Are there any other ways to increase MSH levels? We haven't had the whole panel run; just the MSH. It's my understanding that low MSH is a sign that his body can't clear out toxins properly?... I'm having ds take activated charcoal on empty stomach in mornings to help bind/clear toxins, but don't consistently get this in him as his stomach is upset every morning it seems like and he doesn't want to take pills. But, maybe three or four days/week I can get the charcoal in him and we do epsom salt baths every night. I think I could get son's doctor to write rx for cholesterol med, but have also read that not many people can tolerate this, and with my son's stomach issues from all the abx, I'm scared to throw this in. Thanks for any suggestions on the MARCONS anyone might have. I did read some notes online from the Klinghardt conference about a homemade urine nasal spray, but, my son said no way in ###### could he do it!

Wow, that was really inspiring to read that sptc and michael. I am really interested in/trying to learn more about Dr. Klinghardt's theories. My son's LLMD, although he had never heard of it, agreed to Rx BEG spray for known marcons and ordered at least the MSH testing, which hasn't come back yet. His LLMD isn't world class or well known, but, is very open to different treatment options and suggestions. I printed off info. from Dr. Shoemaker and the Klinghardt conference prior to our appt. last week and gave him copies and he genuinely seemed interested and thankful for the info. vs. offended. Although very overwhelming at times, I feel that in order to get better, we do have to understand the underlying processes of the body and what isn't working & sort of become our own children's doctors in a strange way. That's a pretty steep burden on top of dealing w/everything else that comes w/these diseases/disorders. But, we aren't really left w/any other choice if we want to truly heal them. We have made a lot of healthy changes in the last couple of months, but, there is so much more we can do. I want a quick fix as much as anyone, but, the more I read/learn, the more it seems that it isn't possible. Just like there are no quick fixes to losing weight - it's a total lifestyle change that has to be maintained/embraced. I have SO many questions, but to start: 1. Do you have any recommended reading (is there a book by Dr. K)? 2. How do you train w/Dr. K, are you a medical student? 3. Do you use the "lyme coctail"? If so, do you go off abx while using? 4. My son has known anaplasma, lyme, mycoplasma, standard tests for other co-infections have come back negative. Do you think it's necessary to do Igenex to completely rule out other co-infections or just focus on the infections/issues we know about right now? 5. Is it good to take off abx or reduce abx while herxing to give the body a break? Thanks so much, Laura

Priscilla, what specific line on the quest lab results did you look at? Was it the CD57+/3- also? My son's test was ran through Quest and his LLMD said he couldn't interpret. So frustrating b.c. the first time the lab didn't even run the test, so had to go back, specifically on request said to run through Labcorp. When I got the results and it said through Quest, I called the lab and they said, oh, now Labcorp has been bought out by the same company that owns specialty labs and Quest, so, everything is now run through Quest. I have no idea if this is true or the lady was just saying this to get me off the phone. Thanks, Laura

Thanks for all the great information. I didn't give him the doxycycline today. I'm hoping his LLMD will Rx something comparable tomorrow. There is just no way I can keep a ten-year old, might I add stubborn/cranky ten-year old;) out of the sun. He was Rx'd for three months of doxy and seeing that it's only going to be nicer out as the spring/summer progresses, I don't foresee us being able to keep him out of it!!!

I am so glad you posted this. My DS10 Kyle has the same rash and on his hands as well. He also has terribly chapped lips, maybe sunburned? and blotchy splashes all over his face. He has been on doxy for two weeks now. My problem is that Kyle has anplasma and from what I've read, doxy is the best, but also read rimfampin (sp) has worked on pregnant people. Kyle also has mycoplasma and suspected lyme (waiting on CD57 tests, western blots negative), so not sure what combination of drugs he may need? So frustrating b.c. after ocd diangosis, then pandas, then pitands, now mycoplasma/anaplasma/lyme, I finally felt like we had right meds:( Hoping Dr. will be willing/able to Rx something different and that he will give the right combination. He's also been terribly sad/crying/depressed/tired for past few days. Was thinking it was herxing, maybe it was/is, but now wondering if allergic reaction to the doxy.

Oh wow, I feel so naive... I'm just now switching over to the lyme board from the pandas/pitand as I am pretty convinced my son (and possibly I) have lyme. My son and my dad are buddies and are out in the woods on their 40 acre property almost daily. They hunt there, fish there; in additon, we live in the country - I saw two dead deer carcasses on my walk last night with the dogs. I don't know why, but, I was almost thinking we didn't have to worry so much about reinfection?! Almost like a cold or something - already have it so immune. We have to be really vigilant on spraying/checking still? I realize this must sound like a stupid question, just threw me for a loop reading it. We see a local LLMD this Thursday, I feel like I was just starting to understand the pandas/pitand stuff and now I'm trying to learn about LD!

Thanks, this is all super helpful. I am working on trying to feed him smaller meals throughout the day. Super interesting how all of these things come into play for our kids. Never in a million years did I dream I would ever say that my son has an autoimmune disorder, an immune subclass deficiency, a mycoplasma infection, a rare anaplasma infection, suspected lyme disease, and suspected hypoglycemia?! He seems/looks so healthy sometimes, all of his symptoms are psychological... except for the hypoglycemia, he is starting to say he feels awful physically now when I suspect his blood sugar is low, he just cries and can barely walk sometimes.