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Everything posted by HopeinHIM

  1. Our DS12 went through Bart treatment and then prophylactic PANS Zithromax for past few years. Both Lyme's Doc and PANS doctor are very well known and reputable. We finally had a top Immunologist enter into our insurance so we switched. This Immunologist treats and understands PANS. She diagnosed our son w/chronic fatigue and POT's like symptoms . NO LYMES!! He is too tired to go out most days. This new immunologist suggested removal of all dairy and grains (even clean products) as well. HE HAS NOW LOST 15LBS. . We have doubled his calories and no gain. So this plus the chronic fatigue is awful to watch. This doctor claims its all Dysbioses from too much anti biotics in the past and that combined with some immune abnormalities and leaky gut has created this "Post Viral Chronic Fatigue". Yes we always gave good pro biotics! Our son feels he has better thinking on the diet for sure but he is so weak. Much of the LYMES like Bart symptoms are quieted down (not gone) and what remains is complete exhaustion. It's been this way since February. Immunologist says the Lyme's piece is FINISHED and it's not one specific pathogen. She feels that If we treat with further meds we will do more damage!! But the old Lyme's doc says it may be Bart still. UHG!! I am doing some herbs like Houttynia, Kudzu, DanShen and immunologist has him on some cycles of Tinizidol and diflucan for the Dysbioses. She says that these meds cycled with diet changes and time will change things. With the wt loss he now doesn't bounce back after his fatigue attacks. All clinical diagnoses too. Labs only say weak immune system. ANYONE have any thoughts??
  2. Thank you. I needed to hear some positive news today. I am not too happy that she doesn't believe in Lymes too much but I have my LLMD so perhaps I will just work with both but separate. LOL
  3. Had apt with Dr Jyonouchi NJ and she was nice but very difficult to understand. She wants to put DS on diflucan and low dose Zith. Also wants to start him perhaps on Igg therapy but says he must have vaccine first for insurance to pay. Dr B told us to never vaccinate with fragile immune system. UHG. Our son is border line CVID and still has Bartonella. Dr J does NOT believe it's any Lymes of any sort but instead that all inflammation to brain and body is due to immune system malfunction and poor gut flora. We have been working on Bart and Pans for 3 years and currently ramping up Buhner herbs and doing ABART still on 3 days a week on Zith as per Dr T. . His overall immune system has been dropping past few years even though we have been doing so much support . (IgG and IgM) We eat clean and mostly all organic. Anyone have any reaction to this vaccine????
  4. You can't allow your children to eat pesticide laden crap and expect their gut microbiome (and thus immune response) to function. Environmental toxins (and that includes vaccinations) are slowly killing our children and producing improper immune response. We all need to WAKE UP to this fact. http://people.csail.mit.edu/seneff/ We need to detoxify them (see Gerson in the video) and support proper immune response using nutritionally dense diet (see Terry Wahls). The problem is not the infections. Thanks for the video sf_mom. I have been contemplating prophylactic Sota for a while, even though DD14 is now totally asymptomatic. Yes..... NO argument here on that! While I have been able to change our home over to organic/clean veggies and meats plus Gfree as well, the battlesssss continue! Much of my son's issues revolve around food. His OCD food focus is up there at the top. Many times the only way to get order is to reward good behavior with an ice-cream cup. Took me a year to get it to be mostly coconut milk ice cream . So the home is most definitely cleaner but I am unable to completely clean everything up plus add the myriad of live foods, grass fed meats, mercury free fish, Kombuchai and Kefir. I am amazed at how some parents are able to do so much more and that the ill children comply. Our son would rather NOT eat!! And food refusal has happened. My husband and I have removed much from the home but the more we focus on super clean eating the more it wraps into his mental struggles. Plus....none of the docs and herbalists we see seem to think that tightening up much more will change things more than they are. That weakens my resolve when things get real tough (and they do) So we are somewhere in the middle. The battle is not only with our children, its with the pocketbook. Feeding a family of five (four of which are hungry males) is expensive no matter what. There are just so many variables. Don't want to whine!! Bottom line for all of us is we want our families healed. If there were resources (like clinics or live counselors) to encourage and walk families through this maze, it might make things a bit more possible. My son in particular, might be inclined to take ownership of his condition more if we weren't so cloistered. The nature of this world that we are forced to live in is so complex and complicated. I need to just focus on what I can feasible focus on and move forward when possible. I can confidently say that there is so much more good info out there than three years ago when we started this. Thanks for so many great responses. This forum is a huge encouragement and resource for sure.
  5. School is pushing forward. I trued to get hone instruction and even with two doctors notes and a therapist note they declined n say he should be at school even if it's just a few hours a week. No learning going on although they do try. Have him IEP in resource room for quiet. Yes , he also has ocd. But his mind just races on Hus interests. Vgames n skating. He seems to have no ability to concentrate on school subjects. He seems upset BC he says he wants to be like normal again but school work easily overwhelms. I am on inderol myself. For migraines. I am sure there is a psychological components involved as well. I guess I could try med again but Dr. T put him on it a while back n he got dizzy so I did not give a good trial. Thnx☺My husband also has ADD so I am leaning in that direction though.
  6. DS 12 PANS/ Bart. Two years on varios treatment. First year anti B's second year naturals. Things are settled down a bit and we are no longer homebound. Doing Byron White, Abart, Zithromax helps PANS symptom's and allows me to use the herbs with more success. Without it, he reacts to everything neuro- psychiatrically. We need to get him back in school. He has done nothing in two years and it's time but he cant seem to think on school work for more than 20 minutes a day. Plays Vgames and seems well but school work equals stress and no go!! First on the journey we tried SSRI's and a few other things to calm his thinking. They all explode on us. He get's anxiety. But that was two years ago and ready to try again. What non stimulant has anyone had that works for focus. he just says he cant focus ever on learning. Was honor student.
  7. Dr B treated out son's Bartonella with Amox/Bactrim/Zith . Three month on this and No more rages. Be careful to make sure you Detox along the way and go slow on this cocktail. The PANS kicks in as the infection dies and causes inflammation. NOT easy I know. It takes time to stop the rages but it's been two years and praise GOD no rages. We used Pinella, Burber, Redroot and Kudzu for Detox plus Chlorella. Hang in there!!!
  8. Hi. I wonder if there are any facilities like that in Tri Sate area? My one n is 22 and (pandas) and this might be useful IF it is covered under insurance. That's what everything comes down to now. I know we all can relate to spending 1000's and 1000's . Thanks for the hopeful post!
  9. Beerae 22 I had a tough week so henceforth the venting! I can clearly say that therapy has helped my sons. Had to go through a few awful ones (tell your story and look at blank faces) before I found one that was willing to research, listen and with kindness and compassion take us on. i might suggest sitting down one day and call through your" participating therapist LIST" and one by one interview and see if they are experienced with the condition or even brain injury patients. You will go through the list fast bc most don't call back or immediately let you know that it's not their expertise. But the one that listens and is willing, may be the person who can help. Our children walk around with inflamed brains most of the time. They live in crushed glass rooms with their little feet bare. They walk through most days on a pile of unstable barrels and at any moment (like the cookie was eaten) the barrels go tumbling down and all breaks lose. I constantly educate our therapist. I found a great resource psychologist in NY state who was very helpful. She works with children/adults with Lyme and has lots of helpful suggestions. She told me to throw out all my old expectations and be flexible. I made copies of her paper and sent to the school and his therapist. My point is we are always educating ( professionals, family, friends and Doctors) bc WE are on the fronts waging WAR with our children against this disease. My son will also flip out if someone eats his ice cream. Entire nites are ruined because no pizza is left. BUT, BUT when he is not inflamed, he handles it fine and i use those times to quickly point out appropriate behavior and encourage. The raging or fragile times (and they are still around) I just do what I need to do to get by, keep peace and what not. Very easy for well intention-ed Mom's (I have one) and husband's to resort to thinking our children are normal and normal traditional discipline works. IT doesn't most times. They need love, kindness and compassion more than most because their brains have been hijacked and they are fragile little butterflies trying to "survive" childhood. The "picture" of us disciplining looks different. WE do have to direct and discipline YES but it's just going to look different with these kids. Some days they look like spoiled brats getting away with murder but those days are NOT the days you can reason with their broken brains. Even though my family lives with these children, I find that i need to constantly educate them as well. Everyone goes back to their lives, jobs and so forth but we (you and I) stay in the mess with the hurting children day in and day out: Celebrating the good days and falling off cliffs on the bad. So, Yes a therapist might be very helpful. OCD and rages come and go but a few strategies may be useful to learn with them for coping. I am backing off anti B and going Buhner herbs. Cant tell you if it is a good idea or not but it is where I feel led. Stay strong and know that your daughter IS IN THERE. WE just need to pray that some day these precious children return to us healed. Thank you for sharing your story and helping me to see I am NOT alone. God Bless us all!
  10. That's a beautiful idea but we are on East Coast! I love the idea for sure! Wouldn't it be nice if a millionaire provided a beautiful warm weather 1 week retreat for our kids and parents of course I think I will pray for this right now. LOL
  11. Going on 3rd year with PANS/Bart diagnoses for now 12 yr old and Pandas/Babs for 22 yr old. Tired, tired tired! We have done months and months of anti B's and gone to top Pans docs here on East Coast and several diff LLMD/LLND from here to Connecticut. All sincere decent doctors who seem to care but make it clear that ultimately "they just know what works completely"! My kids are guinea pigs for meds, herbs and Methly supplements on a regular bases. It's Auto immune encephalopathy, post infection encephalopathy or reoccurring encephalopathy. Pick one or all of the above! We did Anti b's until their stomachs got turned inside out (stopped the raging thankfully) then moved to herbal Byron White and Buhner protocols. Some success here and there but ultimately life is gone as we know it. My eldest can only go to college a course at a time but even at that feels tired and overwhelmed often. My little one has had NO school for 2 years now and went form straight A student to IEP special Ed a few hours a week if we are lucky. No covered dishes come to the house only naysayers and doubters. Thankful we have a supportive family that listens with sympathic but helpless ears. It's best, I find it best to just keep quiet about the illness and be vague because most people don't understand and don't want to.Including the pediatricians or GP's that we need to go to on occasion. The best (worst) part is that most of the entire medical community involved in this mess have different strong opinions and protocols. One says, " take this and that", others say "oh no that's hard on kidneys or liver" another says" give methyl B's only to quickly say stop methyl B's. Treat parasites, don't treat parasites Blah, blah blah. I actually had a phone consult with our Pandas doc who very honestly admitted that all the anti B's may ultimately not be the best for the immune systems in the long run. That's after I spend $800 for the phone consult! He clearly admitted sadly that "he just doesn't have any idea in the long haul and that we are all in the genesis of this disease unfortunately . Forget the money we spend on all of the docs, meds and herbs. The marital stress it puts on us is unbearable. I attempt to go to Gym , pray , eat right and so on but what mom really wants to spend time on herself when her children are constantly telling her "I DONT'T FELL WELL!!!" I am thankful that the raging is gone but both children are NOT thriving they are just surviving! If I had unlimited resources I would keep going and never stop until they healed but we are depleted and need to make 2016 the year that we just adjust to the NEW NORMAL!! Did I say I was tired?
  12. Our DS is doing better than he has in two years. Thank God. But we need to increase the Byron White ABART past 2 drops for only 2 days a week and rifampin is only 1/4 dose. We have to give these apart every other day with a rest in between of nothing or things seem to go down hill quick. We are OK here but Doc says we really need to ramp up a bit. He has been at these level of herb/meds for three months. If I increase at all we start getting emotional and fragile. I have lots of detoxes in place and we are beginning to address Methyl issues, but just cant add anymore. Benenite clay began a few days ago but a bit concerned about aluminum. Plus some say supplement with minerals on the clay others say it has minerals. Hoping this method can help us to get to the next level. Parsley, Pinellas, Burbur chlorella/charcoal on non benenite days and pro biotics as well. We don't want to lose ground but can NOT increase!
  13. Can you tell me how your kids did with allergy shots? Allergies are a huge trigger for our DS and the local allergist wants to start allergy shots for that reason, but she is not really PANS knowledgeable although she is PANS friendly. Also, how did your take your child off allergy meds for testing (DS takes singulair and levoceterizine and sometimes that's not enough)? We also see Dr. T. Thanks! As we moved through treatment, our youngest no longer shows allergies. He no longer uses any meds. Our oldest has been doing the shots along with treatment and he is having a ruff time. Their immune systems are already worn down so I really struggled with what to do. We ended up going very low and slow with him. It has been 8 months and see no improvement as of yet. As far as testing, we just removed all meds prayed and went for it. We got through OK! There are mixed opinions on treating allergies at the same time. My boys are perfect example s.
  14. Dr B was the doc who finally put us on the Bartinella/Lymes track. WE too traveled from NJ. He is a nice man but He is NOT going to help in the nutrional/supplement's/ detox department. He is an MD!!! He will give you the anti /Biotics. He is no longer taking some insurances and that was too bad bc he was one of the very few docs left that still participated /w insurance. Very very busy office and although a few gals are nice, overall, they are disorganized and unfriendly group. They take forever to get back to you so be prepred for that as well. Get to know the office girls names and see if you can connect that way. They will draw blood /and do the igenx tests at the office. He is NOT an/ LLMD he is an//allergist. /He/ will run the standard allergy tests. Do NOT run them in his office bc if you are from NJ you will need a local allergist should your child need weekly shots and your local allergist will not take another docs test results. Even if they say they will. My kids /went thru the testing twice for that reason. Nj allergist would not take Dr B's results. If you go armed with lots of knowledge and know all about detoxing then you should be OK. Our child got better for the first few months with Dr B but he /was overloaded with three different meds AND with NO detox protocol/. For our child that was very bad. He definitely understands the PANS /Lymes connection . Dr T is also our Dr and He /is NOT Lyme's co infection knowledgeable at all. You must be educated with these guys. I love them both and they both have their strengths for sure. You must be educated with all docs in my opinion. Each one will offer you /only a piece of the puzzle. Find out how well your child detoxes / and any methyl issues and bring the info to Dr B. He will also do IVIG in his office if you need that. Again, research and ask around with each form of treatment bc Dr B is very busy and not into the small (but significant) details of treatments. That will be up to you. He believes that a lot of PANS is Lymes/Co-infection related and for that reason alone, he is helping a lot of very sick children.
  15. Both the control rats and the GAS rats were given various adjuvants such as complete Freunds adjuvant, heat killed mycobacteria h37RA, heat killed B pertussis and boosted later 2 +4 weeks. I think the control rats (no GAS antigen ) would have had a permeable BBB as did the GAS group. The control group had an increase in TH (tyrosine hydroxylase=precursor to DOPA) and D1 and D2 in the prefrontal cortex. I find that quite interesting and wonder if that could be a clue for some children who react negatively? In this study they used ampicillin ( B-lactam). Zithromax is a Macrolide, so I don't now if that would make a difference or not. For that matter the rats/kids might make a difference too, but still interesting!
  16. Now that I have stopped crying from reading your post, I can join in with these wise women. DO NOT GIVE UP!!. Your story was/is my story. Our son has PANS/Bart/Babasia. Many doctors and much $$ and finally we began to treat Bartinella and Lymes and he is coming alive again!! We began by treating just PANS/ cox socci. Labs said NO co infections or Lyme's so I moved on. One horrible year later I revisited the possibility of Co infections thanks to this forum. Our son can't detox so we go very low and slow on Rifampin. We have implemented lots of detox herbs along the way along with organic clean food and WATER!!! Certain children with specific genetic predispositions can not handle all the crud that is in our environment and food so they fall apart physically and psychiatrically AND (infections can push them over the edge). We were told by the best PANS docs and top ND's that Lyme's didn't seem like part of the picture. But then, one LLMD disagreed and encouraged us to treat. Our PAND doctor (who I still use for various reasons, still is NOT interested in the LYMES component)BUT I can tell you that my raging, OCD, mentally crippled child is returning. NO more raging and no more OCD. He is laughing again (thank God)He will tell me "Mom, my head is clearing and I am feeling like old me!!" Rowing Mom is giving you amazing information. Read and apply! Do not give up. Your boy is inside there and persevere until he returns. He is the child who wants to bike ride and canoe but inflammation has sabotaged his mind for now. Our 6 year old niece is manifesting the exact same symptoms as our son (your son) did and we are immediately investigating co infections. Not waiting on labs. During the 23andMe test we find that she has the same genetic mutations as our son. (detox issues, Methyl issues) For some children the steroid bursts and prophylactic anti B's hold them. However, Steroids can be very bad for PANS/Lyme's kids. This is a journey and no two children are the same. I have also discovered that NO doctor knows all . Each seems to have only a piece of the puzzle. It will be up to YOU to put it all together to bring him to the finish line!!
  17. So sorry. Our son had similar presentation. Started treating Bartonella and he did well for a few month and he just went off the deep end. Fast forward one year with multiple docs and very little direction. We discovered that he was not detoxing well and he was toxic which was causing a PANS reaction of neuropsychiatric symptoms. We had to stop....build up his immunities, drink lots of lemon water, Epsom salts baths and certain herbs for detox help. 23andMe test showed us that he had methylation issues and was G6pd. This is a mutation that doesn't process sulpher well. Are any of the meds you have on Sulpher based? Bactrim is one. We introduced Pinella, Burber and Sparga. These three helped amazingly. Then restarted the anti B's very low and slow. Pulsing was all we could do. Our LLMD does not pulse but he does with us bc of our child's poor ability to Detox. I also used Chlorella a bedtime or charcoal tablets. Several months on this protocol our DS finally began to calm. Look into that test and get him detoxing. If you treat w only anti b and no detox they can get extremely emotional from the spill off of neuro toxins!!!! We also added very slowly slowly some Stephan Buhner herbal Bartonella protocol. Some moms I have spoken with added CBD oil with success for calming down,
  18. Child can't swallow pills. What form of detoxers can we use then? Pinella? Burber? Zeolite? Herxing horribly on Zithromax so we are now going way slow and low but need a protocol.
  19. I too like to plan ahead. LOL There in lies the problem. Our DS has missed 18 months of school. Every attempt at reintroduction was a failure. Best advise was from a therapist in NYC. Take all your past expectations a throw them out the window. They can and most likely will cause problem for your child. The brain takes a long time to heal for some. Others no. Our child now has a tutor from school under a 504 to come to our home three hours a week. That's all he can do. We attempt more but it's not possible yet. He is emotionally better and physically stronger but any school work fatigues him with in 45 minutes. Its so frustrating I know but remember how our great forefathers educated themselves? A tutor came (if they were lucky/wealthy( a few hours a week to their homes). My straight "A" advanced student son is NOwhere near what he was two years ago (yet) Stay encouraging, let him go at his own speed and just be thankful that you are MOVING FORWARD! Our son can't read at this point long paragraphs fatigue him the most. The 504 was a good to start but in order for the school to continue the modification's we will now need an IEP. If he can read, just let him go there for awhile. The more we stress out about "falling behind" and college level classes!! The worse it will be for him. Most of the kids I have spoken with or read about, catch up fine in the end. He has been through a huge trauma!! DE-stressing and healing is what he NEEDS now. He needs to know its going to be OK!! God bless and hang in there.
  20. Hi, My little niece is struggling. Dr T says her Cox socci is very high so he started her on Valtrex. It calmed her 60%. She has become progressively more fragile since the PANS diagnoses 6 months ago. Anxiety attacks and emotional deregulation. Cortisol levels are very high as well. Lyme's Doc G in PA doesn't think its Lyme's related based on her history and Igenx test and so she is only been on Valtrex. Yes!! She is Somewhat calmer on but how long can she stay on this stuff?? AND she is NOT completelt stable yet!! Dr T started her on Zith (at mom's request bc my son has Lymes/PANS) on Sunday and she almost immediately went extremely anxious. Could not calm herself down. This reaction was on half dose too. Was trying to stay slow and low but wow she responded. Dr T says just remove it. My question: What does this mean??? It must be indicative of something here. Does this point to her PANS being Not just Viral cause. Too soon to be a herx reaction. Correct? Parents removed her from Zith and she is back to 70% OK but still so fragile. Mom cant leave her side most of day and has to keep busy all the time with her. This is very difficult for the family . I am afraid this is beginning of PANS and want to find the trigger. Thank you for any advice.
  21. Hi One more thing. Pierre Fontaine is a Homeopath not a Doctor. We take our eldest to him. Nice man but very, very expensive. We have had little success so far so we will only be able stay with him another month or so. I believe homeopathy can be a huge piece of the puzzle for sure but it needs to be reasonable in price bc you will be revisiting often. For us anyway!! We were able to Skype with Pierre and that does help!
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