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Everything posted by mama2alex

  1. I like Santa Clara Drug, but haven't been to them for that specific purpose. You can call and ask though. They are very helpful.
  2. Yes, I agree with MomWithOCDSon, a good probiotic, or even rotating 2 or 3 brands, is very important while on antibiotics. I'm sensitive to Sach B. so I take Custom Probiotics and Theralac. If the bloating and diarrhea continue though, I'd call the doctor and see what they say. Some kids need a supplement or a medicine to actively fight yeast while on abx.
  3. I'm not sure if it's new, but my son took it for a couple months recently with no real change. However, his main symptom now is depression, so we may be dealing more with Babesia than Bartonella, not sure. We are working up on the Buhner protocol for Bartonella and will probably add herbs for Babesia after that. I'm also planning to start him on ozone therapy in August. If insurance doesn't cover it, you may want to call and ask about an alternative, or whether they can give you an Rx for 3 days to start, in case he reacts to it. It's possible they may even have samples if it's new?
  4. I've been using Liver Life for a while now and I've had no problem with it. It contains several mushrooms plus red root, milk thistle seed, and olive leaf, and at least two of these are Buhner recommended herbs. I mix it right in with Buhner herbs and other herbal formulas. Buhner states in his books that all these herbs can be mixed up together. I put my son's in a couple ounces of organic no-sugar-added pomegranate juice to mask the taste, and also because Buhner highly recommends it as part of the Bartonella protocol. I put my own in water because I reacted to the pomegranate juice.
  5. If you want to pursue testing through your current doc, and they are open, I'd ask them to order Igenex tests for Lyme and all coinfections. The partial reactions are very suspicious - many times the immune system is so suppressed by chronic infections that you only get a weak response on some bands, or even no response at all. Igenex is used by most LLMD's, though their tests can also produce false negatives. In the end, if there's any question of Lyme, you'll need to see a Lyme-literate doctor.
  6. Have you had testing for Lyme and coinfections through good Labs like Igenex? Many adults with Lyme present with psychiatric symptoms. I had recurrent URI's and sinus issues are not uncommon with Lyme either. It's all just a result of the immune system being devastated.
  7. Did your doctor test for any co-infections such as Bartonella and Babesia? If not, they probably don't know much about Lyme. Your best bet is to see an experienced, integrative LLMD who treats kids, because Lyme and coinfections are really a clinical diagnosis using testing as an aid. There are just too many false negatives with all of the tests to relying on testing 100%.
  8. Like others, wish I'd known that Bartonella, Lyme and other tick-borne infections can cause the symptoms of PANDAS/PANS - and that's with or without strep in the picture. It's actually very common. Also wish I'd known about all the havoc mold can wreak if you have Lyme & co-infections. Best lab for Bartonella is Galaxy Labs, IMO. Best lab for Lyme and others is probably Igenex, though my son and I ended up needing to do Advanced Labs' culture test to get a definitive test result on the Lyme. A regular (mainstream western medicine) doctor probably won't order those labs for you though. Best to see a Lyme-literate doctor as they know everything to look for and most, if not all, have seen PANDAS/PANS kids by now.
  9. Hi Frazzled, I'd really recommend you start a new thread with a title that tells people you're looking for an LLMD or similar in VA, MD or DC. People tend to skim the titles of threads and only open the ones that are relevant to them. Also, it was BigMighty who mentioned Carolyn Walsh. You can "PM" BigMighty- send a private message - by clicking on their name, then click on the button for sending them a message. I'm in CA, so I can't help with doctor recommendations on the east coast.
  10. It does sound like you need to switch Lyme doctors, since yours won't treat him for Lyme or Bartonella. Did they ever test him for Lyme and coinfections? When it's this long-term and complex, there is always more than one infection going on. You can probably get LLMD recommendations on this forum if you start a thread letting everyone know you're looking for a Lyme doc in your area. It sounds like your house may not be mold-free yet, and that is an absolutely essential first step. An air test won't give you a true picture of what's going on in your house. The ERMI test from Mycometrics is the best test, and if that comes back positive, it may convince your husband that more needs to be done. Also, there may be more to detoxing mold than just cholestyramine. Read the book Mold and Mycotoxins - Current Evaluation and Treatment by Dr. Neil Nathan. He treats different classes of molds with different binders including activated charcoal, chlorella, and bentonite clay, in addition to cholestyramine. These are things you could do at home without a prescription. His website is a great resource too:http://www.neilnathanmd.com/ I've spoken to him on the phone a few times and he is very knowledgeable and experienced. Have you read about the ketogenic diet for siezures? I haven't researched this much, but have read about it here and there over the years. This may be something to look into, as it will simultaneously eliminate all the typical allergens others have mentioned - gluten, soy, dairy, sugar. The picture you posted is definitely a Bartonella rash. We've started the Buhner protocol for Bartonella because despite years of treatment with antibiotics, our 17 year old still has it. He didn't have the rash to start, but developed it on his back 3 years ago and it's never gone away since. I know Buhner seems overwhelming, and I avoided even considering it for years for just that reason. However, there's a mom on this forum who healed her daughter completely with Buhner, and my brother-in-law is now having success treating his Lyme and coinfections with it. I would recommend just starting with his book on Mycoplasma and Bartonella, since you know for sure you're dealing with Bart. Once you read what he has to say, you start to understand how this infection works and why antibiotics are rarely enough. Even if you decide not to do his protocol, you'll have a much better understanding of what you're dealing with and may want to just pick and choose a few herbs to see if they help with symptoms. A lot of the herbs he recommends target inflammation in the body, and he explains why this is crucial to healing. We are planning to continue antibiotic treatment for while getting up to speed on the full protocol, as I don't think the antibiotics have been useless and Buhner even suggests that using abs AND herbs can have a synergistic effect. I've found the Buhner Healing Lyme and Coinfections Facebook page to be a good resource: https://www.facebook.com/groups/1441091676154216/ Also, I totally agree that heavy metal testing is important! Heavy metals can really wreak havoc on the immune system, and if your son was vaccinated, he is in the age range that received a large number of doses with the mercury preservative Thimerisol. Also, if you or he has amalgam fillings, that can definitely contribute as well. I recently found a blog I really like called the Real Food Rebel: http://realfoodrebel.com/ She followed the Wahl's Paleo diet, not ketogenic, but I found a lot of useful information here. Another great resource is the Better Health Guy blog: http://www.betterhealthguy.com/
  11. Hi, I'm so sorry your son is going through this. I can't tell exactly what you've already done and how long he's been sick from what you wrote, but an infectious disease doctor won't help you (as you saw). You need to work with a Lyme-literate doctor, if you don't already have one. As you know, the purple streaks are probably a Bartonella rash, but there can be other bacteria, as well as viruses and parasites along with the Lyme and Bartonella. Here's an article that shows one kind of Bartonella rash: https://www.lymedisease.org/cdc-identifies-new-species-of-bartonella/ This looks just like the one my son has had for the last 2+ years, but I've seen other Bartonella rashes on him that were more transient. How do you know the mold has been completely dealt with if he still has so many symptoms and is bedridden? It definitely seems like there's more to explore and an LLMD who understands mold would be your best bet.
  12. There are a few possibilities and others have mentioned some of them. Has he had a vaccine in the last few weeks or months? That triggers new or returning symptoms in some. Have you moved or changed schools? That could indicate something in the new environment, such as mold. Any recent dental work? That can be a trigger for some. I agree with HopeinHIM - if he hasn't been evaluated by an LLMD for Lyme, Bart, etc, this would be a good time. These infections deplete the immune system and can cause allergies, immune deficiency and autoimmunity.
  13. WS, Yes some of the rash is indented - it is not composed of tiny raised bumps. I have never seen stretch marks that look like a Bartonella rash - I don't know why so many doctors claim this. I gained 40 lbs all in my belly during pregnancy and my stretch marks weren't anywhere near this severe looking. I don't know the origin of the picture in the LymeDisease.org article, but I shared it because it looks exactly like my son's, and several Lyme-literate doctors have confirmed that his is definitely a classic Bartonella rash. I'm not sure how you would prove this to your pediatrician, but you might want to consider, if he/she doesn't know already, are they the best doctor to diagnose and treat Bartonella? If I were you I would go straight to an LLMD, because Bartonella is not easy to treat, so you need someone who really knows what they're doing.
  14. In case anyone is wondering what a Bartonella rash looks like, I came across this article and photo recently. My son's rash looks just like this and is also on his back. It didn't come out until several years into treatment, and we had a couple of rashes come out in different places right before, but they were transient and didn't have the raised skin. His friend also has a very similar rash on his back and is in the process of being diagnosed. https://www.lymedisease.org/cdc-identifies-new-species-of-bartonella/
  15. Fatigue, anxiety and brain fog are classic symptoms of Lyme Disease (and other tick-borne infections). Many kids with PANDAS/PANS have Lyme and coinfections - they can also cause OCD, rages, ADHD, anorexia, insomnia, etc. Given that you're in Wisconsin, which is endemic for Lyme, I would find a Lyme-literate doctor to test and evaluate her symptoms asap. You can start a thread here asking for a recommendation in your area, or call ILADS and ask them for a name.
  16. Well it seems to be about toxicity, so detoxification would make sense. An integrative doctor or DAN doctor could probably provide the best guidance on how to safely detox the toxins in Miralax. I would stop the Miralax immediately if you're suspicious of it contributing to her PANDAS/PANS. You can use natural constipation treatments instead. Magnesium, prune juice, and castor oil are three possibilities I'm aware of. If you don't know of an integrative doc in your area, start a separate topic asking for recommendations in your area.
  17. http://abc7news.com/news/parents-say-over-the-counter-medicine-is-sickening-kids-/1760065/ "Even though the label doesn't recommend MiraLAX for children under 17 and limits use to seven days, the parents Action News spoke with say pediatricians prescribe it like water, and for extended periods of time. "Near psychiatric events with paranoia, mood swings, aggression, rage," parent Jeanie Ward said. "All of a sudden, she started having this weird ticks," Saenz said."
  18. This is very good information! I will look that up. I heard that it is VERY hard to get Lyme testing. Is that true? It's not hard to get Lyme testing if you have the right doctor. The right tests from the right labs need to be run, and even then they are not 100% accurate. You need a Lyme-literate doctor to look at the entire picture - history, current symptoms, the proper Lyme test, the proper co-infection tests, other positive tests you already have, etc - in order to make a diagnosis. Depending on where you live, someone from this forum may be able to recommend a good Lyme-literate doctor (LLMD), if you decide to go that route.
  19. Hi, I'm sorry you've been dealing with illness for so long. Given the heart issues, neuropathy, headaches, and sensory sensitivity in addition to psychiatric symptoms, you should talk to a Lyme-literate doctor and be evaluated for tick-bourne infections. People with Lyme are often positive for EBV, HHV6, CMV and other bacterial and viral infections. If you're not sure whether you should see a Lyme doctor, here's a questionnaire that can give you a sense of how likely it is that you have Lyme and co-infections: http://www.cangetbetter.com/symptom-list It was put together by Dr. Richard Horowitz, a well-respected Lyme doctor - he has coined the term MSIDS or Multi-Systemic Infectious Disease Syndrome, which is how he refers to the constellation of infections that comprise "Lyme." He just published a book called How Can I Get Better? This may be a good place for you to start as well. Lyme doctors have long known that it can cause anxiety, depression, OCD, ADHD, autism, etc.
  20. MC2 and Confusedmom, I'd highly recommend comprehensive testing for any/all infections that could be involved. This is often more complicated than "just strep." A good LLMD can test for all of the following plus: Lyme, Bartonella, Babesia, Mycoplasma, Epstein Barr virus, HHV6, and Candida overgrowth. Once you've done all the testing and had a comprehensive evaluation by an LLMD, you can really target the antibiotics and make sure you're not missing anything right from the start.
  21. You've basically just listed off many of the most common symptoms of PANDAS/PANS. (I include PANS because it's not always strep triggering the problems.) OCD, tics, rages/meltdowns, separation anxiety, biting/picking, and food restriction are all very common and telltale signs. You should have her checked for strep, by both culture and blood test, because many have discovered strep without having seen a typical presentation of illness (painful sore throat, white spots on the throat, etc). The foot pain is a very common symptom of Bartonella, which is an infection you can get from ticks, fleas (from a cat or dog), or a cat scratch, and often goes hand in hand with Borrelia (Lyme Disease). You can search this forum for Bartonella and find many discussions. Many families on this forum have found that Bartonella and/or Lyme, as well as a number of other infections, have played a role in causing their child's PANDAS/PANS symptoms. Rages/meltdowns are also a common symptom of Bartonella. If you can get the PANDAS pediatrician to test for Bartonella and Lyme through Igenex Labs (and they know which tests to order), as well as doing the strep tests, that would be a great place to start. If they won't order Igenex testing, you would be wise to go to a Lyme-literate doctor - they will also be able to test for strep and many other things. Other common infections in these kids are Mycoplasma, Babesia, Epstein Barr (virus), Candida (yeast overgrowth), and HHV6 (virus).
  22. Thanks for posting about this. I didn't see any information on their web site about using this product for Lyme, etc. I'm curious where you or your relatives heard or read about it's effectiveness in treating Lyme?
  23. Tu4four, My heart goes out to you! You are one strong mama. My son took a turn for the worse over the last few months and it has been rough. Not the same as you are dealing with, but he's also a teen (16), has always been very defiant, and has run out of our house a few times when very angry, so I can relate. We know the Bartonella has made a resurgence, via the rash on his back and circumstances that clearly point to that. But he fell into a deep depression in the last couple months, which we had never seen, and became seriously suicidal (not just talking about it), so we went to a psychiatrist and he's been on an SSRI for 5 weeks. I think it's helping a little, but the jury is still out. It seems to me, now that I'm dealing with it, that the psych meds can easily become a tangled web, especially with these kids, so I hope you have a really good psychiatrist who can sort it all out for you. Other ideas that popped into my head after reading your post several times - and I'll just throw these out for you to take or leave as you judge best: Mold - Have you tested your house? I think your whole family is dealing with Lyme, and if anyone isn't recovering, this is an important one to look into. They can look very similar, and differing genetics could cause one person to react more strongly to mold than others, even in the same family. Heavy metals - If she was given a hair test only, this can be deceiving. Kids who don't detox well won't excrete much into their hair, so it can look like it's not a problem when it's a huge problem. The gold standard is a urine challenge where they take a chelator such as DMSA or DMPS which will latch onto heavy metals and pull them out in the urine. Lastly, have you thought about a place like a Rogers in Wisconsin? I have heard amazing things about them on this forum, though you'd have to talk to them to see if they feel they could address her particular issues. Insurance may cover this. Hang in there. You'll be in my thoughts and prayers.
  24. If I'm reading this correctly, he started on minocycline about a week ago and his symptoms started getting much worse about a week ago. So could it be a bad herx or he just isn't tolerating the mino?
  25. There's a book called "Cannabis for Lyme Disease and Related Conditions" by Shelley M White that might be helpful if you want to learn more.
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