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Found 33 results

  1. I have past positive test results for Lyme, Bartonella, Babesia, Relapsing Fever (B. Hermsii), Rickettsia. I spent the past year treating these infections with antibiotics and herbals and two IVIGs. I have never had any physical symptoms of the above whatsoever, in fact I have managed to stay very fit and workout 5 days per week throughout most of my treatment. All my symptoms are psychiatric PANDAS/PANS-like (24/7 extreme social anxiety, depression, obsessive thoughts/worries). Whenever I have treated any of my Lyme, co-infections and candida, I get a significant increase in my PANS symptoms along with some fatigue (never physical pain). I also don't really feel I ever improve with detoxing (epsom bath, alka seltzer gold, detox supplements, etc.). I have alway been under the impression that this is a herx, but I came across this article and thought it would be relevant to share: http://lymemd.blogspot.com/2017/08/autoimmune-encephalitis-and-lyme.html Based on this, "herxing" that lasts weeks on weeks and months on months and doesn't improve or change isn't actually herxing. It is continual triggering of the autoimmune response which is not helpful or beneficial at all. I was always under the impression that my feeling worse with increased PANS symptoms was the Lyme/co-infections dying off. Now I am thinking that all of that "herxing" may not have been necessary. Chances are, even though I have/had these infections present (and as we know you should treat infections BEFORE immune therapy/IVIG/PEX), my immune system was strong enough to hold them at bay and my only issue was the PANS autoimmune component. I hope this may be helpful for other people who have been in the same predicament as I was and if anyone has any insight on this I'd much appreciate it. Is my thought process above correct? Having just finished 7 sessions of plasma exchange, I am about to embark on 6 months of monthly IVIG and my plan is to avoid stirring the pot and re-triggering any autoimmune response while my body adapts to the IVIGs. For me, this is looking like using Buhner's more gentle approach to keep any remaining Lyme/co-infections in check without triggering my immune system into reacting and exacerbating my PANS symptoms. It has been a miserable road for me, especially in my early 20s when the rest of my friends have moved on and finished college and started their lives. I have yet to see any improvement and it has been 3 weeks since PEX. Only way to go is forward.
  2. Hello, all. I joined the forum today and skimmed messages for our issue. I have a 17 yo daughter who is positive for lyme, bartonella, and babeisia. She is in treatment for those as of April and also has an eating disorder that she began treatment for in September of 2016. I am desperate to connect with anyone who has had the two illnesses as her ed psychiatrist does not believe that she has the tick infections and she is herxing bad (increased eating disorder and other symptoms.) Decreasing the antibx will not stop the restriction cycly. Her llmd does not fully understand the eating disorder and we are headed for a major hospitalization when she becomes medically unstable. Thanks. Amy
  3. DS8 is 19 months in since the sudden onset. We've had multiple abx treatments, tonsils removed, IVIG, high dose pulse steroids, 10 weeks of partial hospitalization for ERP therapy, another round of diagnostic testing. Positive for D1 antibodies on Cunningham panel, positive for Babesia duncani, and lyme. Some indication of bartonella. Treatment for lyme & co-infections. Another HD IVIG...more Babesia/Lyme/Bart treatment. Added LDN...switching out abx for Lyme&Co. Overall better than last year but aggression and liability issues still. Still getting one or two red hot ears without explanation (maybe lyme?) frequently. Still dealing with enuresis. Currently on minocycline, cefuroxime, mepron, ibuprophen, LDN, glutathione, probiotics (visbiome & florastor), loratidine (antihistimine), vit D, BLT drops, phosphotidylcholine, multi-vitamin. So the question is...do you think it is time for plasmapheresis? Thanks!
  4. I've got a few questions: ECP test:do LLMDs think the ECP (eosinophil cationic protein) test is useful to monitor the intensity of babesia infection? Would IVIG invalidate the ECP test, like it would an IgM/IgG assay? treatment:I've picked up prescriptions for Alinia and Malarone for the babesia. What side effects should I expect from one or both? Should I first start one and then the other to separate side effects? Also, kiddo's had Diflucan for 4 days last week. His headache's a bit worse, and he's been feeling blah and very stressed. Could that be a herx reaction? Kiddo thinks it is from his fears of the impact of a climate-instability-denying, narcissistic, xenophobic, racist, misogynistic and Putin-friendly bully (that's pretty much a quote). He is scared for the world, not just the US. Thus it's hard for me to tell a herx reaction, and whether to add more drugs to the mix.
  5. "Ticks will be tested for 6 pathogens: Borrelia burgdorferi, which causes Lyme disease;Borrelia miyamotoi, which causes tick-borne relapsing fever; Anaplasma phagocytophilum, which causes human granulocytic anaplasmosis, Ehrlichia chafeensis, which causes human monocytic erhlichiosis, and Rickettsia rickettsii, the agent of Rocky-mountain spotted fever, and the protozoan pathogen, Babesia microti." More info here http://www.bayarealyme.org/lyme-disease-prevention/tick-testing/
  6. Hi. New and overwhelmed. My 4.5 YO had a sudden onset of motor and vocal tics, adhd, clumsiness, OCD, sensory stuff, sleep disturbances, tantrums after falling sick with a cough/fever Dec 2015. Pediatrician suspected PANDAS and started him on Cefdinir however ASO/DNASE negative. Symptoms improved 50% in a month however new symptoms kept emerging. We saw Dr B who ran more tests and diagnosed PANS with borderline Lyme. See Igenex and Galaxy results below. Started on Azith, Cefdinir and Malarone last week. We are seeing an increase in some symptoms (herx?) while others are in check. In hindsight, my son was bit by an insect when he was 3 but the ER doc did not think much of it and sent us home with a topical lotion. There have been symptoms (eg tantrums, meltdowns, wanting to be carried) that we chalked up to difficult boy behavior. So sad this has turned into full blown PANS. Do you think this is Lyme/PANS? I would hate to treat him with antibiotics/anti-malarial for two years if he doesn't have Lyme and we should have been looking for something else. BUT if it is Lyme then I need to toughen up and prepare for a long road ahead. Igenex Lyme: Negative overall IgM 41 IND IgG 23-25 IND, 39 IND, 41+++ B Microti IgM 20 (may or may not indicate active infection) IgG <40 Galaxy Bartonella IFA 32 (less than or equal to 32 indicates negative. Greater than 1.64 positive) All other co-infections negative. My questions are: 1. Do you think he has Lyme, Babesia, Bartonella? 2. Are there additional tests you would recommend to confirm diagnosis? 3. I keep reading that there is no cure Any stories of successfully eradicating these infections? 4. What treatments and length worked best, especially if you had a young child? 5. Should we find an integrative LLMD in addition to Dr B? Any suggestions close to NYC? Sorry for so many questions and thank you for your help! C
  7. help, anyone know where to get plasmapheresis/therapeutic apheresis on west coast, my son has been in severe flair for three years, past year has been life threatening for him and us, he is in critical condition and three dr's have rec plasmaphersis but cant find a dr that can order it and where. Stanford wont help. all I know of is dr L and dr B on east coast... anyone know?
  8. Hi, Does anyone know if its OK to give the Pneumovax vaccine? Both LLMD and immunologist wants my DS (24) to get this. LLMD because wants him to be protected and immunologist because we're looking into IVIG and wants to see if he responds to this.This immunologist does know about PANDAS, heard she is very well versed in it which is why we went to her. Right now he qualify's for IVIG because of his numbers. Saw neurologist last year who also wanted to do IVIG and didn't mention this, was just going to do IVIG but we weren't convinced then or ready to do it. Running out of options and hoping this will help now. Treated for over 5 years for lyme / babesia / parasites. Seeing top LLMD for over 2 years. Latest treatment was for bartonella....Rifampin paired with others since Dec. and no real improvement, so LLMD took him off everything and is currently on Difflucan daily for possible yeast. I'm thinking wasn't on the bart treatment long enough because bart streaks did appear about 3 months into treatment but now have disappeared off treatment. Anyway....any thoughts on the vaccine? thanks frikfrak
  9. Hi, My DS (24) still not getting better after 5+ years. Too long of a story to go into it but have tried everything. LLMD and Pandas doc think its time to look into IVIG. Went to Neuro and he agreed to do it. I made appt. with Dr. B in CT just for another opinion. They said will have to test whole family with test, not covered by insurance. Could be up to 1400 per person in household. Is this normal? Can hardly afford test and appt. for DS no less rest of family. Is this a deal breaker if we won't do it? Has anyone else had to do this with this doc? Should I even bother to go see him? Just thought I should see an immunologist. Any info would be greatly appreciated. frikfrak
  10. Hi, We just finished a bottle of Researched Nutritionals Arteminisin and have to order more but been reading up on Hopkinton Arteminisin. Would definitely like to try this. Does anyone have any info on it....helping? where to purchase? how much to take? thanks for any help frikfrak
  11. Hi, Can anyone help with how to take Zeolite. I purchased the powder form and it states "Does not mix well in water" They suggest putting it in yogurt but we are dairy free. Can I mix in applesauce? or something else. My DS is great with taking anything. I'm sure if I did put in water he would just down it, how much water, full glass? Also do you detox everyday or maybe just on weekends? I'm assuming you need a 4 hour window just like activated charcoal so at best I can only do this once a day.....good enough? For how long, weeks, months? thanks for any help frifrak
  12. Hi, I know that alot of people use magnesium for their children to help them sleep. My DS (24) sleep has gotten worse, to the point that only seroquel works. I would prefer not to give this and want to try magnesium. My question: His magnesium levels are fine so is it still ok to give magnesium. Also he has constant diarrhea which we are trying to fix so I read to give Magnesium Glynicate because it doesn't create diarrhea, yes? There is also a newer form out now...Magnesium Threonate, supposedly gets into the brain better, has anyone used this? Also what dosage....500 mg. before bed? thanks for any help frifrak
  13. Hi, Has anyone used Metabolic Maintenance REM Maintenance for sleep? Was just recommended this by our doc. Does it work? Hate to spend more money if it doesn't work. My DS (24) will only sleep if given seroquel. thanks frikfrak
  14. DD13 is doing wonderfully! Three years ago I would not have believed that she could improve to the extent she has. She has lost all cognitive/executive impairments and her Tourette's is only suggestible (if I ask if she needs to tic she will have to - motor only, no vocals), and not otherwise visible. Going back to school has not resulted in any sort of relapse. We were at the cottage this weekend and without me asking she got out her homework (Grade 8) and reviewed (reworked) 30 math questions for a test that she has today. She packed the homework herself, got it up to the cottage and took full responsibility for studying. She worked for at least 3 hours. Neat and tidy writing, organized work area. At dinner time she admitted that she was having trouble with one question, but that she felt after dinner when she had had a break that she would figure it out - and she did. No screaming or crying. No throwing things or raging. Absolutely no frustration; just confidence. It was truly amazing! This was a child that 3 years ago (Grade 5) I had to physically dress, brush teeth, tie shoes, pack backpack, pick up homework from school and work through unfinished school work/homework one on one because of ADD. She had an IEP and the help of the classroom EA. She sat behind a screen and wore ear plugs to decrease distraction. She was removed from the classroom for testing and had an EA sit with her to redirect her attention. She had an EA or another student go to the bathroom with her because she would become distracted and forget to go back to class. She had to eat lunch in the special needs classroom so the teacher there could redirect her to eating; otherwise her lunch would return uneaten. Her printing was huge and messy and her books covered with doodled pictures (the same one over and over - her OCD). She raged, she screamed, she hit, she was socially withdrawn and regressed. She was so fatigued, dizzy and in so much pain that she had to sit out of gym class, or sit on the curb watching the neighbourhood children play. She had Tourette's so badly at times that she couldn't read because of head snapping/bobbing/eye rolling, and often couldn't give presentations in class because her vocals were so bad. A couple of times her Grade 6 teacher would recount this to me and cry, she felt so sorry for our daughter. Her improvement has been nothing short of a miracle. We are maintaining low doses of Buhner's bartonella protocol (minus l-arginine), I am still messing about with the babesia herbs. Both DD and I are reacting very strongly to bidens (1 drop 3x daily) (which Buhner says is not supposed to be as potent as cryptolepis), with brain herxes (dizziness, brain fog), but with the help of Julie McIntyre we are still seeing improvement. One thing that I found to be a surprise was Julie's recommendation of cilantro/zeolite for detox. I put off using cilantro for about 8 months. One because I thought it was baloney (you'd think I'd know better by now), and two because I couldn't find an organic source. Well I found an organic tincture source, and as soon as I started using it (1 drop 3x daily) our daughter's remaining symptoms declined noticeably (that is, even my husband noticed). I messed about and ended up being too enthusiastic (10 drops 3x daily) which resulted in a yeast infection (googling revealed that the gut may overgrow yeast to protect the body from too many metals being dumped into the intestine at once). Instead of using zeolite we are using Diatomaceous Earth; we may switch to zeolite (which Julie swears by, and she hasn't led us astray yet - except for dosages which are very tricky for us (we find 1/4 of recommended dosage to be best). The amazing thing is that during a recent trip which entailed a week's stay in a "free wireless" hotel (meaning wireless is EVERYWHERE) both our daughter and I were unaffected by the EMF's. We are usually quite electrosensitive. Previous trips to wireless available buildings (museums, hotels, restaurants, malls etc.) generally resulted in an increase in symptoms for our daughter (especially ticcing, fatigue and headache to the point of having to sit down and rest) and palpitations/anxiety for me. I was not looking forward to staying in the hotel, and neither was our daughter, but after our first night there we realized that we weren't being impacted to the extent that we had been. We actually slept like logs! Cilantro and clays are used in many natural metal detox remedies; and it would make sense that removing metal burden from the body would decrease reaction to electromagnetic frequencies. No child should have to suffer the pain, fatigue and cognitive dysfunction that DD has had to endure, but I have learned so much from this journey: That mainstream medicine may not be the be-all, end-all. That bacteria are not the only problem, that compromised immune/detoxification systems are responsible for symptoms as well. That our children are being poisoned by the pesticides in their food (big agriculture) and by the metals/adjuvants in the 70 (!) vaccines now recommended by experts (mainstream medicine / big pharmaceutical companies). No large corporations/conglomerations are ever again going to tell me what is best for me or my family. Although in the past I would have considered myself nuts to even suggest this to anyone else (let alone believe it myself), I now read several alternative health sites: http://www.thehealthyhomeeconomist.com/ http://www.mercola.com/ http://www.greenmedinfo.com/gmi-blogs http://www.chrisbeatcancer.com/ http://www.i-sis.org.uk/index.php http://www.ageofautism.com/ http://www.momsacrossamerica.com/blog
  15. I want to do the Igenex co-infections panel on DS, who tested positive for Lyme a few months ago, but he is on two abx currently (plus some natural antimicrobials and a host of supplements). I don't want to risk taking him off abx because he is doing well on them right now, but if he is taking them, will that mess up the results of the testing? He is on Augmentin and Biaxin which I do not believe are used to treat babesia or bart. What about the other co-infections? I can't find any info on the Igenex website about how abx affect the test results. Help please?
  16. Hi, Just had appt. with new doc and one thing they gave me was Deplin (15 mg.) for my DS (23) to try...supposed to split the pill in 2. I've been reading however that your supposed to also take B12 and B6 yet the doc didn't mention either of those two. Should I call and inquire before giving this? thanks
  17. Hi, Was just given this to try....Haven't found too much info on it, has anyone had any experience with this? thanks
  18. Hi all, I thinking of taking my DS (23) off all abx to treat yeast...He's been laughing for years and i think its yeast. I've tried periodically to treat with difflucan among other things and yet still laughing uncontrollably. Gave him a 30 day course but didn't seem to do much. Of course while trying to treat yeast he's still been on abx so maybe you can't treat both at the same time. I have him on Candicid Forte at the moment, anyone have any experience with this? If I take him off abx will he regress so bad its not worth it? How long to treat?...could take months then of course back on abx. I keep reading that you have to heal the gut to get better. I'm sure his gut is shot. He's been on abx for over 4 years. any thoughts? frakfrak
  19. Hi, My DS (23) lately has been very touchy..meaning touching/playing with EVERYTHING...sees the garlic on the counter and starts peeling it...takes the salt shaker or pepper and puts it in whatever is around like iced tea...just basically playing with everything, can't seem to sit still. If we go somewhere he will pick up whatever is around and play with it. Is this considered ticcing? OCD?....If so then I guess he does have pandas as well as lyme. thanks for any thoughts his mom
  20. Hi, Thinking of going to see Dr. S in Wilton CT. She works with Dr. O. She sees adults, my DS is 23 and I think might have some PANDAS going on in addition to lyme/babeisa. Already have a lyme doc and looking for someone for "everything else": meth issues / supplements to take, etc. I have read a lot about Dr. O but can't find anything on Dr. S. Has anyone here any experience with her? The appt. is very expensive and I want to make sure its worth it. thank you frikfrak
  21. Hi, Need some advice....freaking out abit. Had appt. yesterday with neurologist at NYU....told him everything about my DS 23. Been treating lyme for 4 years and babesia for the last 2 as well. All other coinfections negative. Basically my son is mentally disabled, doesn't speak except for 1 word answers but the answers don't coincide with the questions. Very confused, just sits in chair. He has taken MANY abx and herbals, nothings worked. Always declined. Current test come back negative from igenix for babesia and bartonella. Negative lyme (all bands non reactive) thru Quest. Doc from NYU said brain spec from 2010 was bad, memory areas showing no activity. He says my sons immune system is working over time....producing antibodies to the infections but doesn't think he really has these infections anymore so doing the IVIG will surpress and help calm down his overactive immune system. currently seeing LLMD and will of course see what he thinks about all this before we do anything, also going to see immunologist. So NYU doc wants to have another brain spec done, then put DS in hospital for 5 days where he'll get another EEG of brain and spinal tap done as well as do IVIG for 5 days. Then he'll come home and if all went well with the IVIG in hospital, then he'll schedule IVIG for once every 2 weeks at home anywhere from 3 months for up to a year. In reading old post I thought people only did 1 IVIG then not another one for many months later? I don't know what to do....can this set him back? As bad as he is we are very thankful he's as good as he is. Should we just continue as we are? Basically just trying one thing after another, praying something will work? Should we take this chance? Please, any and all opinions are welcomed. Terry
  22. Hi, We just got our results back from Igenix, 1st igenix test we took. Came back negative for babesia, bartonella, Ehrlichiosis and Anaplasma. Doc forgot to check the box to check for lyme so ordering that now. My DS 23 was positive when this all started back in 2009 for lyme and RMSF through Quest, all bands positive. Then is 2012 tested positive for babesia, again thru Quest. We've been treating for both since, Always negative for bartonella and other co-infections. So does this mean he now longer has any of this? We've actually gotten rid of it? If so then why is he no better? The things that are better is his laughing and sleeping. Been giving Japanese Knotweed which I believe did it. He's currently on Alinia, Minocycline, Nystatin, Malarone and Cipro. Of course on multiple supps. including Neem and Core. Did a stool test and it came back very high in Lactoferrin...90.7....normal is <7.3. Doc rx'd the Cipro for this...only taking for 14 days. His Lactoferrin back in July 2012 was only 19.2....so it went way up in a year. See LLMD on the 19th to discuss all this and see what they think. Also have appt. with neurologist (Dr. Chong) in Jan. and making appt. with immunologist. Any thoughts? thanks Terry
  23. Hi, Called Dr. B but they said they do not take my insurance and even if I come in they are not doing IVIG right now and if they did my ins. wouldn't pay for it. They said they will put me on a waiting list if I want, supposed to call back. Can someone please give me another immunologists or another doc that does IVIG. LLMD thinks IVIG would be good for my DS. Nothing else has worked. thanks His Mom
  24. Just an FYI Wednesday October. 9, Kati Couric will have a show about lyme disease. Dr. H will be on it
  25. Hi all, Just hoping for some suggestions here: Recap: DS (23) diagnosed Dec. 09 with lyme, all bands positive and RMSF (was regular kid w/job/car/friends)....starting treating with 1st LLMD....DS very angry/let hair and beard grow (looked like mountain man), started listening to RAP music (which he never liked) all within 1st 6 months....started see Dr. B in Red Bank also. then switched LLMDs, all those symptoms went away and then starting being paranoid, calling police to confess car accident that he had had year earlier, washing hands, going in bathroom for long periods of time...at some point was slamming doors badly (broke molding off the doors)...then all that went away, stayed with that LLMD for 1 1/2 years...son still getting worse mentally. By this time on all kinds of abx, IV doxy for 9 months, shots..too many to lists DS started laughing daily, uncontrollably for long periods of time...still does to this day. Took a few months between LLMDs at this point and took DS to local doc who does treat lyme and wanted to test for metals / parasites....no parasite, metals fine....they found babesia. Starting treating that too. Fast forward to now...with new LLMD (8 months now) still seeing Dr. B who has prescribed numerous meds to try and "connect" and stop the everyday laughing, which is not only hard to listen to ALL day but it can get VERY loud, it must be hard on his body. He also "talks" to himself or someone (scary) because he'll talk during his laughing so its hard to make out what he says. Also will repeat a lot, either something from the TV or something we (his parents) are saying. If he's quiet, I can see his lips moving sometimes. FYI: He doesn't "talk" to us...sometimes 1 word answers but that's it. Sometimes the answers aren't correct for the question so we can't always count on that. The only thing that seems to work "maybe" is seroquel. I hate giving it to him but I figure he needs a break. It does quiet him down some but not always. Currently on Rifampin/Mino/pulse Tindamax (for possible Bart), and Malarone/Zhang's Artemesia (Babesia) and a lot of supplements. Positive for A1298c (?) mutation, positive myco, ASO AB high, and a few other things.....don't really want to list it all, too much. Also getting appt. with Dr. O in CT soon (hoping they can help shed light on why he's never gotten better). Didn't know about PANDAS back then, no one mentioned it...now thinking he had it also. Anyway, my question: Is there something you all give your children to help with psych symptoms or do you all just give abx / supps and hope/pray they just get better, these type of symptoms go away? Seeing Dr. B today and was hoping to suggest something...I research this ALL the time and come up empty. FYI: tried Neudexta and it didn't work. Still trying after 3+ years....all this is just horrible. His Mom
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