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Everything posted by RNmom

  1. Hi, I haven't posted in a long while. We have recently moved to Orange County, California (Southern California). We had a wonderful Lyme doctor in Washington D.C. Now we are looking for one here in Southern California. Please PM me with any info. you have to share. Thank you in advance!
  2. Anyone out there with experience taking Mepron? My ds 24 has trouble with the taste. We would like to try mixing it in a small smoothie but have heard that you cannot "dilute" it. This confuses me because the pharmacy instructions also make it very clear that Mepron abosrbs best when taken with food. Any insight / suggestions would be greatly appreciated!
  3. This is a really nice follow-up report! Thank you so much for the encouragement... we are at the 2.5 year mark for treatment and almost done as well (Bartonella has made our treatment course longer, I think). So good to read that there is a point in time when Lyme disease will not be so frightening!
  4. Thank you for posting this reminder that the ticks are not dying off during the winter as we were once told they do. We live in Northern Virginia as well. This area has a very dense tick population that seems to be flourishing in our environment. I approach nature in this area as if ticks are living and biting all year around!
  5. Thanks for the link - it helped to make it remarkably easy to post on their site. I have to say it felt pretty good to speak up. I would encourage others to jump in.
  6. PANS can have many underlying causes and on that list of "PANS Causes" is Lyme. My son had PANS / Lyme / Bartonella. We did not get the PANS symptoms under control until his Lyme and Bart was successfully treated. I wish everyone could see him now. He is vibrant, developing normally along with his peers, and enjoying his life for the first time in two years. When he was at his sickest point, he could not even come out of his room or communicate with us. His OCD was in the "catastrophic" range. We truly lost him to the illness for a while. Now that the Lyme symptoms and Bart symptoms have
  7. Norcal mom, My son's Bartonella was cleared up after one full year of Azithromycin / Rifampin. I noticed in another post that your sons's rash seemed to be "contained" while on Azithromycin only. You might consider the Rifampin / Azithromycin combination (in light of the difficulties that your son is having with the Septra). Azithromycin alone will keep the Bartonella from getting worse but it cannot effectively clear it. (Also, I wrote this elsewhere but it might be worth repeating: a good friend of mine saw her son's Bartonella rash cleared up after only 4 weeks of treatment. There can be a
  8. Norcal mom, We have successfully cleared my son's Bartonella infection. His rash took one year to clear and now he will continue on the antibiotics for an additional 3 - 4 months to be certain it is truly eradicated from his body. However, my good friend saw a successful resolution of her son's Bartonella rash in four weeks. I think the quick fading of the rash is a good sign that you will eventually be successful in clearing up this infection. BTW, I too thought my son's Bartonella rash (located on the upper hip area) was due to a growth spurt at age 14. Our doc said that is a common assumpt
  9. Hi (again), Just wanted to let you know that I just went back and added info. about psychiatric medications and treatment approaches to the reply I originally posted. I hope it is helpful to you.
  10. My ds15 has Bartonella (and Lyme and PANS). He has been on Azithromycin and Rifampin for @ 9 months. We needed to start him on psychiatric medication to help support him during the treatment phase for Bartonella. His Bartonella symptoms are agitation, anxiety, racing thoughts, and and increase in other PANS symptoms such as his OCD and intrusive thoughts. I had a few thoughts as I read your post: 1). Bartonella looks a lot like PANDAS (PANS). We are now able to tell when our son's OCD and intrusive thoughts are PANDAS symptoms and when they are a Bartonella flare up. When the Bartonella ki
  11. Bartonella can be a "stand alone" infection but it is a common Lyme co-infection. There are a couple of difficult issues to deal with whne treating Bartonella.: 1) The antibiotics that treat Bartonella do not address Lyme or the other co-infections. 2) You must be on the antibiotics for Bartonella for at least 6 months to a year. some people need even longer. 3). Rifampin is one of the best drugs for Bartonella but it must be combined with another antibiotic such as Azithromycin, Bactrim, or Cipro. the reason for this is that Bartonella very quickly develops resistance to Rifampin if given
  12. Someone please jump in and correct me if I am wrong here: Doesn't band # 41 indicate a Lyme co=infection? Also, I have heard that individuals who are immunodeficient may not be able to produce a measurable amount of antibodies to the Lyme. After a period of treatment for Lyme, the immune system becomes stronger and these saem individuals will begin to show Lyme antibodies and have positive Lyme tests. Additional input from others about this would be very helpful...
  13. My 23 year old son tested IgM positive and IgG negative for Lyme back in the fall of 2010. He was treated for a month with p.o. Doxycycline and Flagyl. Then in April of 2011 he developed a serious cellulitis in his foot secondary to an injury. This was treated with IV Vancomycin for one month. This is supposed to be an excellent Lyme treatment that is not used too much these days due to high risk of renal toxicity. An infectious disease doctor prescribed the Vancomycin for the cellulitis (not the Lyme). Our Lyme doctor said this will surely get any Lyme left in his system. BUT, a follow up Ige
  14. Babesia is a Lyme co-infection. It is usually treated with a combination of Mepron and Azithromycin (to name just one of the treatment regimes available). Treatment should run for at least 4 months. The Lyme medications do not work for it. It is very important to treat Babesia. One big symptom of Babesia is anxiety. Other symptoms include things like night sweats - especially in the early hours of the morning, little fevers (not always present), headaches, and (I think) tender shins and muscles. If you go to the ILADS website you will find a lot of good information about Babesia. The presence
  15. Wilma, I just wrote a comment on your other post about Cipro as well. It sounds like your daughter is having difficulty with psychiatric symptoms no matter what antibiotic you choose to treat her Bartonella with. We are having a similar problem. Check out my response to your other Cipro post. Do you have good psychiatric support for your daughter while you are treating her Bartonella? We are finding it to be essential for our son. He was on Topamax for a while but needs something more. We just tried Lamictal with poor results. I have an appointment this week with his psychiatrist and hopefully
  16. Wilma Jenks I swear we are following the same treatment plan for our kids and they are having the same (or similar enough) treatment responses. Yes, my ds15 was on Cipro for his Bartonella for a total of 2 weeks in December 2011. He could not tolerate it. He had a PANDAS flare up while on Rifampin and Azithromycin the last week of November 2011 (he was exposed to strep at school). We switched the Azith to Cipro and the PANDAS symptoms (obvious OCD) went away within a week. But, he started having a chocking tic, some facial grimacing, and he also became "paranoid" (his word). We switched the Ci
  17. Oh no do not give up because of Herxing! If it is really bad you can decrease doses or spread out the pulses. Bartonella treatment takes a long time and the Herxing lasts a long time. If your child also has PANDAS you will need to try and distinguish between the two as you watch over time. It is not easy because Bartonella and PANDAS can look alike. But, you will identify subtle differences in your child as you observe. My ds15 has been on Bartonella treatment for 6 months. Right now he is going through a big Herx. We were surprised as the previous Herxes were decreasing in intensity. Howe
  18. Update: I felt a bit guilty about firing off such a "blunt" response to your question. I edited it (above) and just want to encourage you to discuss another antibiotic to substitute for the Rifampin that you needed to stop. (see above) I "panicked" when I originally read your question. We just tried a 2 day break from Rifampin (to try "pulse therapy") and my son's Bartonella symptoms surged back very quickly (and he has been on Rifampin for almost 6 months now). It takes a long time to treat Bartonella. The organisms replicate very quickly so "pulling up short" on antibiotic treatment rais
  19. My ds15 has had a red cheek rash since 2010 when his illness began. It was the first symptom I tracked (now I have a list of symptoms). This red cheek rash has never been adequately explained to me. But, I can tell you that it is the single most consistent "warning sign" that his symptom constellation is flaring up. First, the cheeks get bright red, then the hands get red, then the agitation follows, sometimes cognitive changes also accompany this process. The red cheek rash!!!! I am with you - if anyone can explain this to me I would be grateful. AND, as with your child, my son's red
  20. Shaesmom, My heart goes out to you for dealing with breast cancer and Lyme. Rifampin is a good antibiotic for staph as well as Bartonella. Also, we do not talk about this much but it is also helpful for Lyme. Nancy gave you good advice when she said to take naps. They will help youget through the Herxing. Expect to experience a flare of Bartonella symptoms: Headache, visual disturbance, brain fog, alterations in mood, bilateral joint pain, soles of feet sore (especially in a.m.), muscles aches, and low grade fevers to name a few. I asked our LLMD about milk thistle and was told it is
  21. I going to pretend it is my kid in this situation and answer: The Rifampin was treating the Bart (or at the very least suppressing it - but hopefully more than that). Removing the Rifampin is allowing the Bart to regain its' foot hold. The Bart rash means you need to substitute with another antibiotic that is also really good for Bart such as Cipro or better yet Levaquin. Some docs will not prescribe Levaquin to kids. Augmentin XR will not touch Bartonella. Minocycline is "o.k." for Bartonella but not enough. When treating Bartonella it is crucial to use a combo antibiotic approach as re
  22. Santi, Wow! Bartonella is notorious for neuro-psychiatric symptoms. I felt that I did not really emphasize that point enough when I posted the Bartonella symptoms list. Your post more than makes up for that omission. I wish you all the best.
  23. Hi Santi, The rash on your son's cheeks sounds like it is vascular. Bartonella rashes are often vascular. But, red cheeks as a single symptom can't tell you if he has Bartonella. The only rash that is 100% diagnostic of Bart is the one that looks like red stretch marks. (Sometimes people think it looks like red varicose veins.) What are his other symptoms? Here is a list of Bartonella symptoms: Low grade fevers Frequent sore throats Dry sticky sweating day or night Rashes that look like red stretch marks usually on the back or hips Headaches on top of head or in front of head Blurr
  24. Hi Philamom, "LV-GB Complex caps by Designs for Health" can be bought on-line. It is a good product that supports liver and gallbladder function. It aids in the clearance of fats and is protective of the gallbladder. Good for folks taking Rifampin or on any medication that is hard on the liver or gallbladder.
  25. To Santi and others who have contacted me, The Bartonella symptoms (for my ds15) include: 1) Agitation and anxiety that makes it difficult for him to "live in his own skin." These psychiatric symptoms come in brief cycles (lasting a day or two and sometimes longer). Often, he could tell when he was starting to feel agitated - he is not crazy and he knows it is not normal. It is certainly not something he wants to be happening. There is a seizure like quality to it as it is often independent of events in his life. 2) OCD that also "cycles" with the agitation and anxiety. 3) Red glove ras
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