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  1. Yesterday
  2. Clavulin is amoxicillan plus clavulanic acid, the same thing as Augmentin (the generic bottle would typically say something like "amox-clav"). As far as I know, it treats both lyme and strep. Treating lyme (and co-infections, which are to be expected) is a huge can of worms. I would see an LLMD.
  3. Hello, Where might I find a list of dosages and antibiotic types that are effective for both Lyme and PANDAS? We are unsure of which it is if any as we are waiting for blood work to return. I have a 7 year old who improved 50-70% on amoxicillion (called Clavulin) but wonder if the dosage is not strong enough or if it is the right type of antibiotic.
  4. This sounds *exactly* like my son. His tics are 100% derivative of his seasonal allergies - threat clearing, sniffing, currently rubbing his nose. They all stem from physiological discomfort but he can't seem to stop doing them. His room is a mess and he will happily get dirty or messy in dirt/mud, and doesn't have ritualistic things like hand washing but he does have issues with his temper/emotional regulation that I always thought were normal until I realized my other kids don't have the same level of explosiveness. He is an anxious kid, and has some phobias, but he is also great in school, well-liked, lots of friends, and is an exceptional athlete. I actually think I have some OCD behaviors that stem from issues with anxiety. I have never had tics, per se, but have had habits like nail biting and hair chewing.
  5. Uhm the links are all not working
  6. Hi i'm in singapore too and my 12yo has loud vocal tics. Will check out this patch.
  7. Thanks so much for your thoughtful answer and prayers. In my heart I believe the Zoloft is to blame, and I'm going to look for other alternatives. Thoughts and prayers for your son as well.
  8. Thank you so much for this helpful information. The doctor never called me back, but I'm going to try again tomorrow, especially as I wait for an appointment with a new pediatrician.
  9. Last week
  10. Hi, my son also started off small. NOW he has grown into changing tics--one week one thing, the next week another. It is a terrible cycle. I have been researching a lot. They say that the tics grow worse at around age 11 or 12. 1 in 600 children get a form of a movement or tic disorder. Food coloring, caffeine, stress, anxiety and excitement make them worse. ALSO zoloft has been linked to an increase in the disorder so if your child is put on meds check the fine print. =( Hoping your son improves. Cheryl
  11. Hi, I am new here and came to see if others were experiencing the same problems as my son who was labeled with movement disorder/tic disorder not otherwise specified. I recently read many articles about zoloft causing tic disorders. IF your children are on Zoloft, this could be further causing your child's tics. I am currently lowering my son's dose and trying to get him off completely to see if this helps. Also helpful NO FOOD COLORING or caffeine! Hope this helps. Cheryl
  12. Hi, I am in the same situation. My son has had tics that come and go for years and recently they have been horrible. He even tics as he sleeps. This week they have been non stop. I was praying --deep prayer, father God take away this disorder ---when Jesus's face came to mind and the words sertraline. Research the sertraline ---which is Zoloft. As my son drifted off to sleep I grabbed my phone and typed in the phrase zoloft and tics. LO AND BEHOLD it is a factor. Case studies proved that zoloft causes tic disorders. I have had my son on this for years due to his anxiety, ocd etc. I will be weening him off immediately. Praying for your child and those who suffer from these terrible movement disorders. We need to make more people aware of this!
  13. My son is 17 and has PANDAS. We are looking into Rituxan but he cannot leave the house and travel to DC where the infusion is to take place. We live in PA. We are trying to get a doctor in the Phila area to write the order for the Rituxan so that we can have it done by an infusion center at our home. Does anyone have experience with that or know of a PANDAS friendly doctor in the Phila area? Thanks!
  14. Did you ever make a connection between Myco & anxiety (or if augmentin exacerbated the anxiety because of myco?)
  15. For what it's worth, I find there is a lot more activity, literally thousands of members, in Facebook groups. I think you'll get a better response by joining some groups.
  16. 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.
  17. I think it depends are what you are looking for that affect your approach toward treatment. Certainly the negatives are the cost impact and getting a preexisting classification with you insurance company for what is found. For DD, it would have been $2,000 out of pocket, We already had a clinical diagnosis so getting the genetic test had no tangible use for us. So for DD it was a no.
  18. That's great information, Thanks. I know I have a long way to go, my son is so difficult to deal with because of the Bart, I know he has heavy metals and he's MTHFR like I do but don't now specifics. I was reading Dr. Amy yasko and she talks about A CBS mutation that is part it methylation pathway. I have not done genetic testing on him but know genetically he has a mutation for mold susceptiblility. This mold for. At my request is sending me Tox ease, I think it has a couple herbs in it, I'm worried about detoxing due to seizures.he is very stubborn on diet but I can work on that, thx for the websites. Just trying to get into a Dr. We went to Jemsek early on and went 3-4 times and you always meet with a assistant , $400.00 per appt. He put him on 3 antibiotics at once and he could not tolerate it., around that time we discovered mold and went to new Dr. as I said she did not treat the Lyme and he just got the Bart rash a month ago . He has not been tested for coinfections, I know he could have more than one. Jemsek did igenex western blot came back positive .
  19. Someone on the site referred me to a Dr. Carolyn Walsh in Leesburg. I see she is on the Lyme board of loudoun county. Has anyone had experience with Lyme? If so what are her modalities ? Antibiotics, herbals,HBot, ? Not sure I can get in? Desperate! He is just laying there say after day till we can get an appt saying he doesn't feel good, if anyone knows of other Dr in va, Md. D.C. Besides Jemsek, Fletcher, Fishman, Mozayeni, please let me know thx!
  20. Hi tayna2001 -- I know this is a late response. Several years ago it was suggested by a doctor who had been monitoring results from LDA, which is short for low dose enzyme activated immunotherapy, that it was not as successful for Tourette's as for some other conditions. However, there is such a range of reasons that people have tics (as well as Tourette's) that I can't give an answer for this. Let me get in touch with a doctor who is very familiar with LDA and see what his answer on this is. I hope to get back to you soon.
  21. Hi mkwgbennett and welcome to the forums. I was waiting to see if any members had this experience with Zoloft before responding. But it did not surprise me when I saw your note. Zoloft is a drug that has helped many people but can also cause a range of unwanted neurological responses (among other types of potential side effects). It can also require care when weaning off of it. Take a look at this list of side effects linked below. It includes convulsions and "muscle spasm or jerking of all extremities." The incidence of convulsions is considered uncommon and the incidence of the jerking and spasms unknown. But it can happen. The huge list of negative side-effects is pretty sobering. https://www.drugs.com/sfx/zoloft-side-effects.html Your child may be among those who have an adverse reaction to Zoloft. What is happening right now? Did the doctor get back in touch and change the approach? We would like to help in any way we can. Hang in there--you should be able to address this.
  22. Carolyn Walsh in Leesburg is an internist who is very knowledgeable about lyme. No idea if she is taking new patients.
  23. Just wondering if anyone else on this board is in Pittsburgh. DS19 plans to keep his internist in northern VA so not super worried about finding any specific doctors here for him. Just wanted to know if there are any others in this part of PA.
  24. 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/
  25. Years ago I was in touch with a mom on here and with time lost track of one another. I don't even remember her name. We used to meet for tea sometimes. My name is Kay and her sons name was Clay. If you are still on here or if some knows her and can forward this, I just wanted to touch base. I think of her often and wondered how she and her family are doing. I hope the years that have past have been good for her and the family. Thanks to anyone for any info. If you do know her please pass my message to her instead of her information to me, just so she has the chance to decline in case she would like to not be contacted. Kay
  26. My heart breaks to read this but I am also encouraged by a parent that is striving for healing and being that wonderful fighting advocate that these poor kids so very much need. I have two children. Both with difficult stories. Very similar to yours. Firstly, I will say there was no single organic reason for their fall . Everyone is different so for some its treat the lyme of mold and bingo the child heals. My oldest has the marks and we were told too that they were stretch marks . He is tired all the time, easily overwhelmed and tics. Our youngest was home-bound for years. What has worked for us? 1. Clean eating. They both have detox issues so every time we treated for Bartinella/Lyme they would fall apart on even the smallest herb or anti B. UHG So we could not do much. When they were at their worst they were very sensitive to yeast and Molds but as they healed Mold became less an issue. NOW Most foods they eat are organic, lots of veggies and fruits, grass fed beef and chix along with cold water fish 2x a week (good for brain inflammation) We removed Gluten/dairy/soy. The immunologist (conventional from big children's hospital) believes that certain kids suffer from innate immune responses from certain trigger foods and these three she found to cause inflammation effecting brain the most. Huge difference for my youngest especially. He is also supper super thin and she has him on amino acid plant based or bone broth based protein shakes between meals and we use high fat organic coconut milk in can. His mind began to clear in a few months just by cleaning up diet. 2. Having Bowel movements 2x a day helped their poor detox for sure. Increased pure water and actually used fiber powder for a while until they both go now 2x a day. 3. Good counseling because even if its caused by something outside of themselves the chemistry is still off and the OCD and anxieties/depression are there and by learning how to deal with these emotions better help's them navigate thru these horrible waters. As we treated our youngest son for Bart all his emotional issues (agoraphobia, Bi polar, OCD) disappeared. WE used low low low dose SSRI and nutritional lithium as well. WE continue to treat yeast, bart with herbs and cycles of 5 day Tinizidol for gut bacteria. Both are NOW able to handle the treatment bc their bodies are functioning better. Diet was a huge life style change and took me 3 years to finally own it and implement it. Best thing we ever did. Not the cure ALL but huge piece of the puzzle for us. Now not everything that comes our way causes them both to fall apart and start over. They are beginning to strengthen the terrain so that the genetic predispositions don't derail them at every turn. Keep searching, praying and never give up!!!
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