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Everything posted by lfran

  1. I was diagnosed with Cat Scratch fever in my teens, and we are now treating DS9 for lyme and bartonella -- he showed bart antibodies. He seems to be responding really well to rifampin. I will post more in a couple of days when I have more data points. Thanks for posting this. It is very interesting. I am glad to read that a CDC scientist is taking this seriously. 26 strains of Bartonella-wow! Its catching up with Lyme.
  2. Here is the link for Igenex's tick tests. They can check multiple ticks at once, for $65 per disease. They say the ticks should be stored with a small piece of moist cotton. http://www.igenex.com/files/ticktest.pdf I would definitely do the test there or somewhere -- if the ticks carry a disease, he will know which antibiotics to start and not go through the guesssing game that so many of us do. If they are disease free, that's well worth knowing, too.
  3. I think it takes a while, but you can test the TICKS ASAP. There are probably several places to go, but igeneix has tick tests that you can order. A lot easier and more reliable, I think, than testing the person.
  4. Oh yes. About a year or so ago, when my son was 7 or 8, he started "rev-ving up" before walking or running. Very complicated action. After several days of a sinking heart, I mentioned "you know, it doesn't really make you go faster -- it's not like the cartoons". "Oh", he replied -- and we never saw it again. What's sad is that we can't just enjoy the "kid" moments -- *everything* has a secondary meaning to us.
  5. Can you shop around for another MD who would order it? Or...if you get a lab form from labcorp or quest and just ask your doctor to sign it? Or...there are websites where you can order tests through them and have their doctor sign it -- privatemdlabs.com is one, I know there are others. They charge abt $200 for DNASE and $45 for ASO --- no MD needed. Pricey, but at least you have your info if you want it. Or inundate your doc with with papers, Saving Sammy, etc.
  6. Yes -- my DS9 also hid under desks and tables at school and at home. Also sound and light sensitive. On current treatment for Lyme and Bartonella.
  7. turmeric/curcurmin is suppossed to be an anti-inflammatory that crosses the blood-brain-barrier. You can buy it in health food store. Also green tea extract. Both are mentioned in Dr. Burrascano's Lyme Disease Protocols as helpful supplements. Thanks, Smarty. That's why I like posting stuff like this - helps with due diligence. The price was enough to give me pause. But was also planning to research the ingredients. It's a frustrating quest trying to find an anti-inflammatory. Many options are for adults only (and are off-label - some things like cox-inhibitors may be ok for an a
  8. That's so awful, what he said. We had an Infect.Disease doc say, in front of my 8 year old, that he could prescribe a certain medication, but he's had patients die on it. My son got up and left the room. I was so mad at the doctor...what are they thinking!! This is for the parents to hear and weigh, not a young child. (And it turned out that you could monitor for the bad side effects and stop the treatment in time...which I pressed him on and he agreed to (after DS8 had left the room).
  9. More rifampin questions: Can you guys tell me your dosages (and weight if for a kid) and if you take it once a day or split into two a day? (anyone know how long it stays in the system?) Thanks
  10. Just started rifampin for bartonella and within HOURS my son's urine turned orange. I knew it was coming but...hours? Also did a baseline liver test before starting and ALT and Alkaline phosphatase were normal, but the bilirubin was slightly elevated (1.4 instead of top of range 1.0). Thoughts? Also...if rifampin does clear the bartonella, does everyone see the stretch mark rash? If you did, how long did it take to appear? Thanks!
  11. Is your doc confusing the double stranded DNA with the DNASE antibody for strep? I think the former is for lupus and the latter is for strep/PANDAS. One of our docs made that mistake once.
  12. I ordered it from Igenex and I think it was < $200. Not sure, because it was bundled with some other tests. Maybe that's cheaper than labcorp.
  13. Thanks. Do you know what the names of the LFT tests are (CBT CMP ALT AST?)? And, what happens if they are elevated...is the damage done, or will stopping the meds reverse any problems?
  14. Am looking for input as to whether Bactim or rifampin is preferred for bartonella. It seems that some LLMDs use one, others use the other. I have looked up the info on both, and the rifampin scares me a bit. So...although some people already answered this in a previous post, I wanted to start a new post to ask as many people as possible which they prefer themselves (side effects, etc), which their doctor prefers (and who the LLMD is if it's Dr. J or Dr. B or one of the other pioneers) and how they monitor for liver issues, etc. Thanks so much.
  15. DS9 was borderline for Bart via Igenex (160). Can you compare that to Specialty labs? We have LLMD appt in 2 hours. Thanks. Yes, my daughter see's both Dr. J and Dr. B. Initially we tested negative for Bartonella with Igenex (june) but tested positive three times with Specialty (sept,jan,may). Her complete co-infection panel was negative from Igenex in June. Had I not received a positive lyme(Bb)result from Igenex at the time, I would've continued down the wrong path. She also tested positive for RMSF with Quest (sept,jan,may) which the titer has gone from 1:256 to 1:64 with trea
  16. My son was mostly p58 and when I did a lot of internet research, I found that that band shows up a lot in Europe and some European labs consider it very specific for Lyme.
  17. Wow. Thank you. Is this something you can test for? If so, where/how?
  18. Thanks, Dawn. I hope we see similar improvement. Do you remember what the numbers were for your child? DS9 is 140 on B. Henselae IgG. Also, are you using Bactrim, or something else? How long are you/were you on it? How long to start seeing rashes and improvements? Any unpleasant reactions? I think we're starting very soon. Our son was "just" positive on the bartonella titer. We never noticed rashes of any sort until we started going after it---his back became covered with the bartonella rashes. His behaviors/sx's plummetted right along with them!! Dawn
  19. Just curious what the actual numbers were for the Bartonella. My son is borderline for Bartonella based on an Igenix test that we just got back. Thanks.
  20. Thanks! Never thought about Costco. I'll give them a try.
  21. Sorry -- forgot to add that in. It was done earlier. 41 and 58 were positive,31 was IND. But, he tested positive for lyme with the urine antigen dot blot, so we already know we're on that path. Right now on zith and amoxicillin -- not sure what's coming next.
  22. Just got Igenex panels back for DS9. CD57 Absolute Count was 43 (low is < 40; 40 to 98 is borderline; <98 is normal) CD57 as % of lymphocytes was 1.15 (< 2.26 is low; 2.26 to 4.65 Borderline; > 4.65 is normal) All else was normal except for Bartonella henselae IgG of 160, which "may or may not indicate active infection" according to Igenex. Other Igenex Bartonella tests (IgM, FISH, etc) were negative). A previous *screen* (not titre) for B. henselae was negative in December from Labcorp or Quest, not Igenex. So...any comments?? So, I think LLMD is going to
  23. I've heard from my parents that *their* parents stuffed them with ice cream and milkshakes because they were too thin. I personally wouldn't worry about healthy and let them eat what they want in these times of trouble -- triple scoop? Milkshake? It's got calories and protein. You could add some powders, etc if it doesn't change the taste. If you read stories about pioneer life or other times, people ate way differently than we do now. Not as much sugar and chemicals, of course, but stuff we wouldn't dream of feeding our families now. Slices of fat covered with sauce, etc. Dinners of
  24. Good news. Just a warning re: cholestyramine. I took it as a young adult and it caused major depression, which my MD said was a known side effect. (hat was 25 years ago, might be newer studies!) So you might want to research it and be aware. They switched me to oat bran (tastes awful) instead, to get the same effect. I think psyllium powder does too (not as sure on that). These other two can be bought at the grocery store, so might want to consider that.
  25. Yes, I wish we had banked DS9's, but I didn't know too much about it at the time and his was a complicated birth where he was rushed to the NICU, so it probably would have fallen by the wayside anyway. I am being charged about $100/year to store DS7's cord blood. FYI: you may be interested in this story, which I remember back when it happened about a teenage girl who contracted leukemia and couldn't find a donor match. Her parents undid a vasectomy to conceive another child, who turned out to be a match. It was a heartwarming story. http://affiliate.kickapps.com/_ABOUT-Marissa-Ev
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