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mama2alex

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mama2alex last won the day on February 6 2017

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About mama2alex

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  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. Hi! I just read your comment on a post about your son taking BLT Microbial balancer #1 back in 2011 and that he was doing better! My doctor just prescribed it for me for Lyme and co-infections so I was just wondering how your son is doing and how the BLT worked for him? Also did he get a lot of die off reaction from it and did he have to work up slowly on it cause I'm very sensitive to everything I take and always get die off. Lastly if it did work, how long did it take to start seeing results and at what dosage was he on when he started seeing improvements? I've been suffering with severe chronic pain for 6 years now and can't even stand for a few seconds due to the pain in my back, knees and legs. Ughhh I really hope this works! Thanks for your help in advance!!  

    Shadiah 

     

  6. 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.
  7. 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.
  8. 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%.
  9. 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.
  10. mama2alex

    Frazzled

    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.
  11. mama2alex

    Bartonella, purple streaks, mold

    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/
  12. mama2alex

    Bartonella, purple streaks, mold

    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.
  13. 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.
  14. mama2alex

    Bartonella Rash Photo

    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.
  15. 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/
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