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Everything posted by kmom

  1. Hi, It's been a long while since I posted. Overall my kiddos and I are doing well with Lyme treatment. A few bumps in the road but we are way better off than if we never found LLMDs for diagnosis and treatment and I have the veterans on this forum to thank for that I am need of Dr. in the Albany, NY area that will help my cousin. She is 38 and was Dx'd with MS 8 years ago. She has been treated w/ MS meds but back in Jan of this year things changed. She was dx'd w/ pneumonia in Jan and again in Feb. Then she was dx'd w/ asthma. There was some conflicting evidence whether she had
  2. RN Mom, Do you find "LV-GB Complex caps by Designs for Health" better than Milk Thistle? Thanks!
  3. Well I have to agree. I was shocked when I moved to my area (NW suburb of Philadelphia) and I was told there was something in the water b/c so many kids were on the autism spectrum. But I wasn't worried b/c my kids were 4 and 7 and seemed perfectly healthy....till 7 months later when my daughter had chronic strep throat and along the way of testing the family, my son was a carrier. After her tonsils came out, a new child emerged, a completely different child. Over a few week period, she developed severed OCD, anxiety, facial and hand tics, insomnia, would stare at me like she wasn't in her
  4. To be honest I forgot about this test. No never got it done. I never understood why Dr. T told us to get a test that was impossible to obtain. I tried every which way and even called Mayo Clinic in Rochester, MN. I basically had to be there to have the test done. I am sorry about your situation. I have been with my son abd daughter. Luckily, I switched gears from seeing only PANDAS dr's such as dr T and Dr. B and found 2 fantastic Lyme Literate dr's who really understand infections in general because my kids weren't only ailing from strep bacteria thus focusing purely in strep was not g
  5. Hi everyone, Sorry I have been MIA. My dad was sick and passed away a month ago so I was super busy traveling to help w/ all that. Luckily my kiddos were doing so well on Lyme treatment thru it all (and even b/f he got ill). They still are WAY better than last year but since starting school my DD caught a cold/viral Inf and wouldn't u know facial tic returned after being gone for so long. Her OCD/anxiety flared too. So disappointing bc things were so normal in every aspect--going to sleepovers, no anxiety, no OCD, etc. Talked to Dr J and suggested we stop abx's this weekend to see if sh
  6. So for a year now we have dealt w/ LD/Bartonella symptoms. Didn't realize Lyme was the culprit until last Oct/Nov. But we have learned the effects of the nasty stuff ticks carry...1st in my DD, then DS, then me, probably my DH, now my dad and possibly my mom. It's insane how this has turned our life upside down (and I know you all can relate!). NONE of us, not even as sick as my dad got (LD/Ehrlichia/Babesia/Bartonella/Chlamydia Pnuemonia) these past few months (dr's assume he got bit sodding his lawn in Feb.) have any of us ever seen a tick or a rash. We had to go off clinical symptoms, C
  7. Wow! Thanks! I want to go. Wonder if there's space available.
  8. Thanks Michael! It's like you read my mind. I have been dealing w/ allergies/sinus issues the past 2 wks. I discovered the MARCONS nasal issue last week and it seems to be my problem. Before learning about it, I instinctively was shoving Neosporin in my nostrols with Q-tips. I am planning to go do the wash ASAP. I need some relief. I did read on a website about the urine recommendation. I don't think I have the stomach for it but I have done things (cleanses, etc.) for Lyme that I never thought I'd do so who knows! Jodie, I agree with all that you wrote. Nicely stated! We are tr
  9. Philamom, I have been researching this more after my dad got sick b/c it just seems so strange that we all are sick. I realize that a family can vacation, hang out in the same Lyme infested yard, etc. and many or all get sick, but I found it interesting how our LLMD was interested in my dad's mold exposure when his office bldg was renovated in summer 2010 thru Dec. 2010. I researched mold, HLAs, Lyme, etc. some more after his appt and it dawned on me that our kids' LLMD tested for HLA and were positive for HLA . It made me wonder if my dad and I and anyone else in my family had this ge
  10. Darlene, The article looks awesome!!! Can't wait to share it! Way to go! BTW, if it helps to use my kids real names, we aren't opposed. We just made it more fun to make up names! Kristie
  11. Haven't posted this till now frankly b/c in all the craziness and stress--switching my kids meds(things settling ) and my dad getting so sick w/ Lyme and co-inf's-- so this was on the back burner b/c it's so minor in comparison. But has anyone felt like they lost their taste buds? I am trying to decipher if it started when Cipro was introduced my med mix. I remember b/f taking Cipro though (maybe like 2 months ago) that I'd go out to eat dinner and nothing ever wowed me. After a few meals out, I remember thinking, "Am I just choosing the wrong meal choice, restaurant, etc b/c I used to re
  12. Thanks SF Mom! I was thinking of PMing you to ask you but you answered b/f I had a moment to PM u. So my dad went to see his family doctor (a Mayo Clinic GP). My mom had scheduled this appt over a month ago when they were perplexed by his symptoms. With all the craziness of him getting sicker, she forgot to cancel it. The trip to Mayo Clinic ER over the weekend for what he thought was his gallbladder bugging him, may just be the co-inf's causing belly tenderness. I think he originally thought it was gallbladder and the thought hasn't left his head. An ultra sound shows no stones. The ER
  13. Thanks! Great info to share w/ a friend who just asked me about her child's Lyme-like behavior.
  14. Thanks! I just emailed ILADS. It's amazing how you lose clarity when knee deep in Lyme with your loved ones. After I read it, I thought, "DUH! What a great idea!" He's actually doing better joint pain/herxing wise. He hasn't vomited again. I have a theory but only a theory...LLMD said Lyme + Ehrlichiois + probable Babesiosis and Bartonella. He's only on Doxy, supplements and detox stuff. He totally has clinical symptoms of Babesia. Shouldn't he be on a drug like Mepron in addition to an ABX? Dr. Seemed surprised he was still vomiting but I have a lot of people vomit from herxing OR
  15. Is there even such a thing as a Lyme Literate Hematologist anywhere in the US? I know there's a Lyme Literate Endocrinologist in my area so I figured I'd ask! This is in continuation from my dad's saga--dx'd w/ LD, Ehrlichiosis, probable Babesia and possible Bartonella. Clinical dx of course. Quest WB negative but CD 57=20! He went to the Mayo Clinic ER yesterday b/c he is still vomiting at times and so weak and achey. He was dehydrated and needs a HIDA scan for his gallbladder...but they don't scan on weekends. LLMD wants a hematologist on board to rule out Leukemia and Lymphosarcoma bu
  16. He's not as high profile as those in documentaries or he would have charged you 5x the price to see him. Altho some charge that much and aren't that high profile! From what I know, he attends conferences w/ the more famous LLMD's but he isn't the one giving the presentations. So I take it you are back to the Lyme trail? Did the people at the meeting think you should investigate Lyme too? Did you learn a lot of info at the meeting?
  17. Thank you ALL so much for the advice. It was helpful. And since I find so much wisdom on this forum, I'm going to kindly as for some more. We got some more blood work results back today on my dad. So we knew from the 1st set of labs that he had LOW platelets, slightly enlarged spleen, CD 57 was 20, and suspected gallballder malfunction (no stones but going for a different scan to check functionality next week b/c he's still having major digestion, gas and still vomitting here and there.) We are so confused by the vomitting he had Monday and again today. The LLMD seems to think he shouldn't
  18. @ ShaesMom--yes, I understand. The salt water in the bath has made their shower curtain colors bleed. When DS was a baby he had bad reflux. I used to tell DH, when that kid stops spitting up on rug while crawling, we're celebrating and buying a nice Oriental Rug. I'm doing the same w/ a new shower curtain. The moment we feel we've kicked the Chronic Lyme thing down the road, Mama's redoing the bathroom to get rid of the bad bathroom/tub memories! @LLM--Thanks. I don't want others in my boat but nice to hear success stories. And I do expect backslides. I knew it was a risk as we tackl
  19. So this is where the movie Under Our Skin resonates in my head over and over about TBI being our next Tsunami. It really scares me. So my Dad suddenly felt ill in Feb. He was very lethargic and was having vision problems--eye twitching, floaters (big ones) to the point it impaired his vision. Finally on a Sun afternoon he was so winded from climbing the steps, he went to an Urgent Care Dr. who dx'd him w/ pneumonia (did chest x-ray) and a sinus infection. The sinus infection wasn't surprising b/c he's a sinus inf kind of guy but the pneumonia was a shock b/c he wasn't even coughing s
  20. Going through a backslide here and need advice. I've been wondering if my kiddos backslide could be due to needing an abx switch, a hidden infection, allergies that are bad now w/ season change, more detox, etc??? Since last Nov. kids have been on Augmentin/Zith/Rifampin for a Lyme/Bartonella dx. They also take Diflucan, Krill Oil, organic raw food multi, alpha lipoic acid, pectasol for chelation, probiotics, LDN and were on Milk Thistle but I yanked that as you'll read below and bought Burbur and Chlorella. They did so well through Feb. My DD felt was @ 95+%. It was amazing. We enjoyed
  21. Ugh, wiping the tears as I read this. Thanks Philamom! Great story. I really needed that today.
  22. We saw Dr. Trifiletti last year for PANDAS. Glad he advised to find an LLMD b/c he's not Lyme savvy at all. We were stuck on PANDAS for a bit when Lyme was affecting both of my kids and myself actually. We too saw Dr. B in CT. Kids had 1 HD IVIg and then I really pushed the Lyme research and realized their labs weren't so negative like PANDAS dr's thought. We got an appt w/ Dr. J but had to wait 4 months so we got in w/ another great LLMD and got treatment b/f seeing Dr. J. He's great. He's in MD. Not sure where you are but he's worth the trip. Sounds like you are on the right track b
  23. You are not alone. The day I realized PANDAS could be a possible cause to my DD's symptoms, I cried b/c I could identify with it. I had Scarlet Fever at 4 and a lot strep issues throughout childhood along w/ OCD, unexplained stomach pains, separation axiety, etc. Nothing like the severe symptoms my kids got but still, I could identify with it. So PANDAS seemed like the obvious Dx when my DD got sick. CHOP dx'd her (although didn't manage recovery well so we moved on to Dr. T and then Dr. B.) A month later, my DS got sick. It seemed very strange then to me that both kids had PANDAS. We
  24. Well said LLM. I agree w/ all that. Plus, I never got straight answers from PANDAS specialists when kids weren't progressing well enough. They seemed as perplexed as we were. It was nice to have good LLMDs to invetigate Lyme and co-inf's, treat and see good results compared to the when we only treated PANDAS and symptoms were much more unpredictable and life was a lot tougher. It takes time to wrap your brain around an additional or different Dx, but hopefully you continue to see improvement and it will all get easier.
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