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Everything posted by sf_mom

  1. We have 3 children with gestational lyme. Our oldest son presented with PANDAS like symptoms after MMR booster, virus and strep related illness at 5 years old. He is now 14 years old, living a very full life, away at boarding school with no OCD or PANDAS symptoms. He too was worse after a steroid burst and often when starting a new antibiotic protocol. The die off of infection can cause a Herxheimer reaction causing a temporary increase in symptoms including psychiatric. Worse before better was a constant in our household over the years. BUT, the temporary increase in symptoms did eventually resolve once the die-off toxins cleared. For our family, treating the Lyme et al resolved PANDAS systems. Kids with Gestational Lyme often do not make antibodies to Lyme because their body does not recognize the infection as foreign. Most Lyme tests are looking for antibodies. If you feel Lyme is an issue I would see an LLMD that can provide the Dot Blot Test via Igenex which looks for the antigen in their urine verses antibodies. Only one of children tested positive for Lyme via traditional antibody testing. He just had the strongest immune response. The other two children do not make antibodies to Lyme and also were extremely immune compromised. They both tested positive via the Dot Blot. Do you have Lyme symptoms? Please look at Dot Blot Testing. https://igenex.com/disease/borrelia/
  2. Wow, It has been a long time since posting to this forum. I had an e-mail from ACN this morning and decided to check-in. What kind of leg pain are your children experiencing? Shin pain and bottom of the foot pain typically first thing in morning is associated with chronic Bartonella. GI issue is also consistent with Bartonella. Thigh pain is associated with Babesia. Here is a great article on Bartonella. You might consider evaluating your child for Lyme and co-infections. http://townsendletter.com/July2015/bartonellosis0715.html I've copied and pasted specifics portions of the article for your review. The more common symptoms of Bartonella include swollen lymph nodes, gastritis, sore soles of the feet most noticeable in the morning, fasciculations (muscle twitching), headaches, abdominal pain, striae (irregular areas of skin that look like stretch marks), skin rashes, tender subcutaneous nodules in the extremities, fevers, anxiety, depression, anger, and obsessive-compulsive thoughts or behaviors. Bartonella patients often describe a number of psychoemotional manifestations of the infection. These may include anxiety, depression, anger, obsessive-compulsive thoughts or behaviors, rage, and even suicidal thoughts.
  3. I have 3 children with Gestational Lyme. Lyme can be passed sexually. If you are pregnant and your husband has Lyme you should see an LLMD as soon as possible. Combination antibiotics can prevent the Lyme from being passed to your child.
  4. D-Four-Kids: I rarely check the forum anymore but had a few minutes to kill today and just happened to see your post. We live in Northern, CA near Stanford University. Our children see a well known LLMD that is located in Foster City, CA and treats children. They have an integrative pediatrician that specializes in ASD & PANS. Plus an additional integrative Dr. that does off label IVs that also treats ASD & PANS. Their pivotal therapies have been: Combinations Antibiotics, IVIG for Immune Deficiencies, IV Ozone and PK Protocol. You are welcome to private message me if you would like their names.
  5. By the way, based on your more recent symptom description I sense he may have a Bartonella issue "volatile moods, and lack of motivation" and not just Lyme. Many of us with PANS find Lyme, Bartonella and Babesia along with multiple viruses.
  6. PANS can be trigger by chronic Lyme and co-infections. Are you still treating for Lyme? Did you treat for any other co-infections? We have three children, all gestational Lyme and have been treating ongoing for last seven years. Our older son was a clear PANS child. Strep, MMR and virus all within three week period woke up a different child at 5 1/2 years old. Younger twins had ASD and Asperger's presentation at 2 1/2 years old. They are now 10, 10 and 13 years old. You would never know of their prior diagnoses. All are living normal lives. Even our DD's learning disabilities have reversed. Eye sight improved, etc. etc. etc. They have had tons of intervention but are well. I would encourage you to revisit the chronic Lyme et al component to resolve PANS
  7. We treat the viruses with L-Lysine, Lauricidin and herbs. The IV Ozone is phenomenal for treating both yeast and viruses. Our son's EBV titers were extremely high 3 years ago prior to IVIG. His titers are slowly coming down even with possible exposure via IVIG. The IVIG can help calm things. However, you are activating the immune system with antibodies. Recognize it can cause a Herxheimer response. It is also important to continue to address any underlying infection or virus while receiving IVIG.
  8. Our son has CVID and Lyme et al. He has been treated since the age of 6 and is now 13 years old. All notable PANS/Lyme symptoms were in remission. He has been getting IVIG for almost 3 years. He still had some fatigue and we were unsure if it was from active EBV (probably exposure from IVIG) or lingering Lyme. All his subclasses normalized with only his subclass 3s being only slightly positive. He was recently denied IVIG coverage due to guidelines changing at age 13. He was off IVIG for 10 weeks and as a result went deficient in his 1s, 3s and almost deficient in total serum. His immune function dropped in half. Thankfully, he got approved for another year. His LLMD believes it might be a lifetime condition for him but minimally will need another 3 years of IVIG. We are bummed his immune system could not sustain without IVIG but still hold out hope there is total recovery. I just wanted to add recovery is a very slow process. However, our son has lived a very normal life and free on PANS symptoms for a very long time. Most recently, he broke out in a Bartonella rash on his back and hips after many years of treatment and no obvious symptoms. Game changers for our son was discovering the chronic infections and viruses.... he had many. Treating aggressively for those infections and viruses. Low dose IVIG for CVID and IV Ozone. Hope our story helps.
  9. I would do a comprehensive stool analysis on your child. It would give you some perspective on his gut status and if he has excess yeast, opportunistic bacteria, absorption, how much 'good' bacteria, parasites, etc. Couple of indications something might be impacting him would be yellow coated tongue (yeast), black coated tongue (fungus), swollen tongue (thyroid). You can google to find images of all conditions.
  10. It breaks my heart to read your history. Typically symptoms worsen after pregnancy. Your instincts are strong and I bet you are right that there was level of protection from antibiotics while pregnant with your second DD. Did you feel better while taking them? I would not waste the additional money on testing your son 'at this moment'. I would test yourself first and maybe not use Igenex. Use what is covered by insurance. See if you are positive. If not positive then consider testing yourself via Igenex. If positive on either test then you have your answer. I also think I had Lyme for many, many years... My immune system kept it in check. I too passed my symptoms off..... Just thought I was recovering from rough pregnancies and having three kids, 2 of them twins.
  11. You might test yourself first. See if you are positive. Also band 39 is very Lyme specific. Band 39 alone would cause me concern. The Dot Blot with provocation would be the way to go for those potentially suffering from congenital Lyme. Provocation (antibiotics or herbs) loads them up so the bacteria is killed and the antigen ends up in their urine. You collect a urine sample every other day, typically starting 48 to 72 hours after starting provocation and three different samples are tested. Our LLMD often uses doxy or similar.... an antibiotic that is known to 'really' kill Lyme. I am actually shocked your Bio-Med Dr. didn't show concerns over Band 39 present on result. I would speak to him about the possibility of this being congenital Lyme. If you find him to be a non-believer in gestational Lyme, I would find another LLMD no matter how much you like him. Do you have any symptoms?
  12. I don't read or post to the forum much anymore but felt it important to tell you our story. Older DS was 5 years old when he had his sudden on-set. He had just had his MMR Booster, came down with strep and was exposed to a child that had a full body rash and fever (told it was a virus) all within a very short period of time. He woke a different child after these events.... it was a perfect storm. To make a long story short we treated him for PANDAS one year. He did well with treatment but symptom remission was not lasting. Six months post his last HD IVIG (he had three) there was blood in his stool ongoing for a couple months. It was at this point we decided to investigate further and saw LLMD to investigate Lyme. It turns out the blood in his stool was from an intestinal parasite and the bleeding resolved within 2 days of starting Alinia. We tested him for Lyme and was only positive for Band 41. Because I also had mild symptoms I was tested along side our son and I came back positive. When children are born with Lyme they often do not make antibodies to the bacteria because it doesn't recognize the bacteria as foreign. We then decided to go further with our testing..... I wanted more concrete positive results to prove Lyme. For me, they did the Epitode Band - 31 (I was positive) and for my son they did the Dot Blot test with provocation (he was positive). The Dot Blot looks for the antigen (like DNA) in urine and not antibodies. Anyway.... we ended up treating him for Lyme pretty much for 7 years. Our son is now 12 years old and currently 100% in remission. It took a long time to treat, recovery was very slow at times but he looks like a healthy young man now. He is 5'8", 115 pounds, in 7th grade, bright, thriving athletically and thinking about going to boarding school for HS. We recently retested him for Lyme and the only band that was positive was Band 41. When we initially tested him we also looked for viruses and co-infections. He was positive for several infections and viruses but just wasn't glaringly positive for Lyme until we did Dot Blot test.
  13. With Lyme even while on antibiotics you might be able to pick up on a die off cycle. Lyme likes to replicate every 28 days and perhaps why you are noting a surge in symptoms every three weeks to a month. Bartonella has a 7 to 10 day cycle. Babesia has less than a weekly cycle. A flair in symptoms heading into and out of full moon cycle: 2 days prior to and post can indicate parasites. Unfortunately, Babesia and Bartonella are technically classified as inner blood cell parasites so sometimes hard to determine which parasite: worms, flukes, bartonella, babesia, etc. I would document on a calendar any days that symptoms seem unusually increased: for us mood liability or rages were a good maker.
  14. I would start each antibiotic separately. Both will independently cause a herx. In our experience, herx's included all psychiatric symptoms.... so, 'expect' things to get worse before better and focus on detox. Our longest herx lasted five months. However, we could tell with each passing week things were improving so we continued to proceed with protocol. Wait to start second antibiotic until symptoms are better than baseline prior to starting the first antibiotic. I would start with Alinia and then Malarone. Babesia can be very tough to treat. Alinia will treat but not as directly as Malarone. In our experience 4 days of Diflucan would not be effective for a ongoing yeast issue associated with Lyme treatment. Diflucan will also treat Lyme. Not sure on your ECP questions. However, antibodies from IVIG will impact results when specific test measures antibody response.
  15. Sutter Infusion and Pharmacy. We are near Stanford.
  16. The weird facial rash was probably slap cheek 'Fifths Disease'. There are plenty of herbal, over counter antivirals that can be used: L-Lysine, Lomatium, Echinacea, etc.
  17. Steroid use can impact CamKII result..... arbitrarily lowering. You might call lab to discuss length of time of steroid use verses testing. Repeat IgG Subclass testing, if deficient, will be sufficient to get IVIG approval for CVID.
  18. Does your younger DS have any symptoms of Lyme even though he has no symptoms of PANS? You may know this already, those with Lyme often have strep as a co-infection and have difficulties eradicating it. Could it be they were both exposed or possible gestational Lyme? I would test his IgG subclasses, also test him for Lyme (I wouldn't treat unless he has symptoms), purchase some MMS and have him gargle in back of throat and spit out - twice weekly with 10 drops in about 10 oz of water. Here is some information on MMS: http://www.mmsdrops.com/what-is-mms/ Here is where to buy: http://mmsforhealth.com/index.php?route=product/product&product_id=69
  19. Our Boy/Girl twins had many Aspergers and ASD symptoms. DS was higher functioning with some OCD. DD was very similar to your DD with language regression at 2 1/2 years. At 3 1/2 years old they were both diagnosed with gestational Lyme Disease et al. They are now 9 years old and have been treated for chronic infection for last six years. Our DS currently has no symptoms of Aspergers or PANS. He is still on a pulsed antibiotic therapy. He has low immune function that is improving. No one would ever know he had some many prior issues. DD no longer has ASD symptoms. She is well recovered but still suffers from issues associated with her Bartonella 'Tick Borne Infection'. She has CVID and receives IVIg every 3 weeks as a result. We are hopeful she will have a full recovery from her remaining symptoms similar to her twin brother. With known rash and prior diagnoses I would contact an integrative LLMD that understands PANS for further testing.
  20. I sent you a PM with some local resources and information.
  21. Can you speak to any other symptoms than fatigue? Does he have shortness of breath? Any pain...... feet pain first thing in the morning, thigh pain, etc?Does he have afternoon fatigue/pain at base of head, throbbing neck and shoulders pain making it feel like he needs to lay down immediately and can hardly hold his head up?
  22. Did they specifically test for Bartonella? There are many strains of Bartonella. Igenex tests for only one strain. Galaxy Labs has the best test for number of Bartonella strains, etc.
  23. The grout like rash that comes and goes seems like Bartonella. When the rashes have appeared for my children they have come and gone within 24 to 48 hours. You can google Bartonella Rash Images and see if any of those photos resonate with you.
  24. Oops, accidentally posted under wrong topic.
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