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mdmom

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Everything posted by mdmom

  1. Our LLMD says if you are bitten take 2 Tindamax right away. I just happen to have some in my huge arsenal of meds. Not sure if you could get your doc to prescribe, but thought might others might benefit from this info.
  2. Ditto on tpotter's advice to see an LLMD. We got the PANDAS dx (from one of your docs in your state) but she couldn't treat from a distance. We kept looking for help and thank goodness we did - we ended up at an LLMD who found Lyme, Babesia, Bartonella. My son has made so much progress in the last 6 months of aggressive treatment (16 months total treatment) He's on IV abx, IV antifungal, IV antiviral. He takes LDN, methylated B12 (doc found MTHFR mutations), and tons of other supplements. I know the Lyme chatter often stirs up controversy on this forum, but I believe it's worth rul
  3. Same here with the vomiting fear - it is one of my DS14's biggest OCD fears, always has been. We can't even talk about vomiting. It seems like a lot of people report this about their PANS kids. My son also won't wear/use anything that reminds him of a time when he vomited, even if it's years later. Hope the IVIG went well. My DS14 is waiting for approval from insurance for IVIG - hasn't had it yet. I'm encouraged by your story that it is helping your 18 year old daughter. I read a lot about younger kids getting help from the treatment, but not too much about teens.
  4. We started IV glutathione 5 weeks ago with my daughter. She gets a dose once a week. She is being treated for Babesia and Bartonella (eventually Lyme) - been on IV therapy for the last 3 months. When we added glutathione, she really started to improve. OUr LLMD tested her glutathione levels through Great Plains and said it was the lowest level she had ever seen - it was 461. I think this might be the missing puzzle piece for her. She does not have PANS/PANDAS.
  5. We have so many things floating around our house that rather than do expensive testing on the dog and cat, I begged the vet to put them both on abx. After she heard that we are dealing with Mycoplasma, Lyme, Bartonella, Babesia and Brucella, she was more than happy to put them both on doxycycline for 8 weeks. Don't know if it helped, but I figured it couldn't hurt. From what I've read, it's really unknown how some of these infections are spread and if they are airborne. Our LLMD says that a lot of Lyme docs are finding that if the entire family isn't treated for some infections (even witho
  6. I don't know why I thought that I had a say in the decision on when to start IVIG -- the ALMIGHTY insurance company denied the pre-authorization request and is requiring a peer to peer review. We got as far as a peer-peer 1.5 yrs ago and we were denied based on a PANDAS dx - big mistake, even though he said he would use the CVID dx. Now the dx is CVID and they are still denying - even though we have a year's worth of low IGG levels to back it up. Ugh. I am tired.....
  7. I've read older posts on this topic, but wondering what the current thinking is on this. When is it a good time to do IVIG? I have read in the past that if a child is PANDAS/PANS and needs IVIG, it is better to get the infection load down first or IVIG will not be as helpful. My son has PANS, Lyme, Bartonella, Babesia. We are into our 15th month of aggressive Lyme and co-infection treatment - last 4 months have been doing IV abx. His IGG levels have been very low for the last 6 months and it looks like we have a shot at getting IVIG approved by insurance for immune deficiency, knowing i
  8. We use Milk Thistle & NAC 2caps of each every day. We also have color coded cups with lids and straws - everyone has their own color - they are 24oz each and everyone in my house is required to drink at least 3 cups/day. Controlling, I know, but both of my children are on MANY meds for Lyme/co-infections including 25 IV infusions each per week and we have maintained liver and kidney health with these simple things.
  9. I copied this from another one of my posts. Hope this is helpful. I totally get the needle fear thing. During my son's first blood-draw 5 adults had to hold him down at a well-respected hospital. He was only 8 at the time. It was traumatic for everyone. Then we eventually worked with a behavioral psychologist who trained us how to get him through fearful things.... EMLA cream and REWARDS. I actually used to think it was bribing and not good parenting until I worked with a behavioral psychologist who suggested it. Have her choose something ahead of time that she really wants and assi
  10. My entire family is treating for Lyme and co-infections and, along with multiple antibiotics, we also take Milk Thistle for Liver support. We all have brown staining on our teeth, which is removable with dental tools and a lot of elbow grease from the hygienist. Our hygienist said it is definitely caused by the Milk Thistle....So it might not just be abx causing the staining.
  11. Thanks for the responses. Mom MD - if you think of it after your appt. with the immunologist, please post the doctor's reasoning for using one product vs. another. Anyone have experience with Octagam?
  12. My DS14 is taking Alinia for Babesia. I did get it here in the U.S. through CVS Pharmacy. When he first started taking it a few weeks ago, he experienced stomach upset. We stopped for a few days and started back up. We also added in 2 ginger root capsules at breakfast and dinner when he takes the Alinia. He has had no stomach issues since.
  13. Can anyone share the protocol that Dr. B, Dr. L, Dr. K, etc. are using for HD IVIG. I would also like to know what product they are using (Gammaguard, Octogam, etc). Finally, what other meds are given to reduce side effects? Anti-nausea, steroids, etc. We are getting close to starting this treatment for my DS14 but I'd like to do my homework before we give the doctor the green light.
  14. My daughter's first diagnosis was hypothyroidism (at age 8) until she was finally dx with Lyme, Babesia and Bartonella 1 year ago at age 12. LLMD says Lyme loves to attack thyroid and pituitary gland, where TSH is made. She is on Armour Thyroid and the doc prefers to see a TSH below 2, although most docs will say it has to be above 4.5 for treatment.
  15. I am quickly realizing how hard it is to treat Lyme and co-infections PLUS manage symptoms at the same time. Sounds stupid, I know, but they are two different jobs, don't you agree? My DD12 is in week 4 of IV treatment for Babesia and Bartonella (not Lyme). Neuropyschiatric symptoms reared their ugly heads a few months ago - we have been at the treatment now for 1 year. She has anxiety, intrusive thoughts, trouble falling asleep, nightmares, night waking. She was my neurotypical kid. I am well-versed in psychiatric meds/therapy, etc. If you read my other posts you will see I've bee
  16. Yes, I forgot to mention gluten-free diet. My entire family has been on a strict gluten and dairy free diet for 3 years. I also has helped tremendously with regulating our guts.
  17. My DS14 has Lyme, Bartonella, Babesia and PANDAS. He went undiagnosed for at least 10 years. We have worked with an LLMD for 1 year now. After 9 months on oral meds, we switched to IV treatments. He is showing more improvement on the IV meds. His main symptoms are pyschiatric - debilitating OCD, anxiety - both of these have led to social issues as well. Would your doc consider IV moving to IV?
  18. My daughter struggles with GI issues because of Lyme and co-infections. She does not get constipated as long as we keep up with the probiotics. In fact, if she gets constipated, we know to up her dose. I'm sure you will get lots of recommendations for brands, but we use VSL#3 DS (double-strength). Insurance covers part of the cost. It is a powder - we use 1/2 a packet and mix it in a small amount of grape juice. I know others on this forum and the PANDAS forum don't like using VSL because it has a form of strep in it....but my PANDAS/Lyme son uses it as well and does not have problems.
  19. Jen, I wish I could gather all of us Lyme + PANDAS families into one room. There are lots of us out there, although there are days when I feel like I'm the only person on earth dealing with the insanity of these illnesses. Just thought I'd send some encouragement your way -- you are not alone! My DS14 was dx with PANDAS 1.5 yrs. ago and 4 docs agreed he needed IVIG. Insurance refused to pay for IVIG, so we were forced to find alternative help. We then found a doc that uncovered Lyme, Babesia and Bartonella in my DS14. We treated with orals for 8 months with very little improvement
  20. Interesting about Babesia and CD57 in the 20's. My daughter would fit this....her CD57 was 21 and she tested positive for WA1 - Babesia Duncani.
  21. We did the CD57 test on my DS14 (his was 13) and DD12 (hers was 21) last April when they were first dx with Lyme, Babesia, Bartonella. Doc said it was an indication of how sick they are. Haven't retested, but it might be time for that. We tested through LabCorp and it was covered by insurance. Some have posted here that some docs believe the CD57 isn't accurate in children, only adults. I am not commenting on this, just telling you what I have read.
  22. EMLA cream and REWARDS. I actually used to think it was bribing and not good parenting until I worked with a behavioral psychologist who suggested it. Have her choose something ahead of time that she really wants and assign a point value to it. Give her points for each part of the process that she has success with. I usually make the points look like money and print them from the computer, but I've also used multiples of something small (pennies, Legos, beads, marbles, stickers). If you use multiples of something, have her hold a cup and fill it with her "points." Things to reward her
  23. I believe it is very important to start at a low dose and work up to the full 4.5 mg. What I left out of my initial post on this was that my husband and I started LDN (liquid form) a couple of weeks ago. We are working our way into a full dose adding .5 mg every three days. My children did not report sleep issues or weird/vivid dreams. Since starting the LDN, my husband and I have been sleeping better than we have in a long time. Hope this helps.
  24. My DS14 and DD12, both Lyme and co-infections, have been taking LDN since June 2011, shortly after they began treatment. It is hard to say if it is "working," as you just can't always tell very easily if the immune system is functioning better. But our insurance covers some of the cost (we have a $20 copay per child) and I figured it can only help, not hurt. They both started taking LDN in liquid form and had to work up to the full dose of 4.5 mg. It comes from a compounding pharmacy and they take it in capsule form now. As a side note, I have not noticed any bad side effects.
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