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RNmom last won the day on April 24 2013

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  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 been largely relieved we are able to discern new PANS flare ups from causes other than Lyme or Bart. For example: one night last June (2012) our son began to exhibit very mild OCD behaviors. (We now know them well and are able to pick up on them very quickly.) However, as it was June and he was not in school around strep and other triggers, and because he was not sick himself and no one in the family was sick (so I thought), I was terrified that perhaps the Lyme / Bartonella treatment had "failed." (Or worse, that he truly was mentally ill and we had been in denial all along.) I had a sleepless and very anxious night after which my older son came to me and said, "Mom can you look at my throat?" To my "relief" (for my PANS son) my older son's throat was bright red and his tonsils were swollen and covered with yellow blisters. We started my older son on Azithromycin that day and my PANS son's PANS symptoms disappeared in 24 hours. For us that experience was a small "proof" that our son does have PANS and it is separate and distinct from Lyme - but can be triggered by Lyme as well as any other insult to the immune system. This small "proof" occurred back in June of this year. Just this week (September 2012) we had another "proof" of a different type of trigger for our son's PANS. I gave him a new Magnesium supplement. He had an allergic reaction (presumably to one of the additives) within an hour. It set off his PANS symptoms (OCD, agitation, clipped communication). I loaded him up with Advil. Gave him a Clonazapan to settle the anxiety. Told him "this was temporary" and that "it was not all coming back." He was terrified. By the following morning he was 75% better. By the next evening (presumably after the new supplement was out of his system) he was 200% better - back to his "new baseline" of happy, healthy, communicating well, and developing normally. It was another distinctly discernable PANS flare from an allergic reaction to a new med. and another small "proof" for our family. My son has PANS plain and simple. When he had Lyme and Bartonella it was so difficult to treat and the treatment took so long that we could not "see" the PANS from the Lyme or Bart. For a very long time it was as if these different illnesses were "one and the same." It has only been since our son has had lengthy stretches of good health that we have been able to discern episodes of PANS due to other causes. Our son has classic PANS - he is a poster child for this illness when he has an episode. Now we understand better how to identify it early. When he had Lyme/Bartonella it looked as if the PANS would rule his life forever. But, when we finally got that treated we can now see that PANS can be managed. I would humbly suggest that some of the most difficult to treat cases of PANS may have Lyme or a coinfection confounding the efforts to get PANS under control. I say that because Lyme and coinfections are so very difficult to identify and take a long time to treat successfully. Confounding the process is the fact that treatment for Lyme and coinfections necessarily trigger Herxheimer responses that stir up the immune system and make PANS symptoms worse. It is easy to get lost in the treatment process, to give up on Lyme treatment too early, to miss a coinfection, or to doubt the PANS component of the illness. In my experience, one of the biggest casualties of the Lyme / PANS combination is the validity of immune modulation therapy. Our son had IVIG and plasmapheresis and they both "helped" briefly. I do not think these treatments "failed," I do not think they are invalid treatments, I just think they were not able to address the Lyme and Bartonella. They key point here is that immune modulation can work for PANS but only IF all the underlying infections are out of the way. At least, this is what seems to be true in our son's situation. It's all about the timing of the treatment. I realize that I have written a lot here. The question about PANS being Lyme or PANS being PANS is important. It begs the greater question about treatment approaches and their timing. I am very glad to see the forum growing in comprehension of this very complex set of diseases. It means we are making progress and there is hope with this illness.
  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 lot of variability with this. The standard approach is to treat until the rash is fully cleared up and then go for 2 - 4 months longer.) Hope this is helpful to you and that things are progressing in a good way.
  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 assumption but, when you think about it, growth spurt stretch marks aren't usually red - and they do not fade with antibiotics. Best of luck to you.
  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 kicks in the OCD gets out of control and is complicated by racing thoughts and agitation. His psychiatric symptoms are much more intense and complex with Bartonella flares. With that said, it is important to keep both the PANS and the Bartonella in mind when choosing antibiotics. It might be helpful to you to determine if your child might have PANDAS (PANS) as well as Bartonella (maybe she does and you didn't mention it here). As I mentioned, our son is getting Rifampin for his Bartonella. However, Rifampin must be paired with another antibiotic to prevent resistance. I mention this because it makes the point about keeping PANDAS (PANS) in mind when choosing antibiotics. We always choose the second antibiotic for its' ability to treat not only Bartonella but also protect against PANDAS (PANS) flare-ups. In this regard, Azithromycin is dong a very good job. Recently our son had an increase in OCD and was also very "foggy headed" to the point of not being able to keep his thoughts straight. He was on Rifampin and Clindamycin a the time. We switched the Clindamycin to Azithromycin and the OCD settled back down and his thinking cleared up remarkably. 2). About the psychiatric medications: Prosac (an SSRI) and Trazadone (an antidepressant) can trigger hypomania and/or mania in some children who have an underlying genetic predisposition. It is important to determine if any up-swing in OCD (and other other psychiatric symptoms) are related to overstimulation from the SSRI or the antidepressant medication. In our son's case, we avoided SSRI's and antidepressants altogether due to a history of bipolar in the extended family. Additionally, children with PANDAS (PANS) do not tolerate SSRI's very well for some reason. (Another reason to work up for PANS.) Our son was put on Topamax to decrease the excitability in the brain that is caused by the Lyme, Bartonella, and the PANDAS. He did not need a very high dose. In fact, as we increased the Topamax from the starting dose to the target dose he (paradoxically) became more agitated. There was a very narrow window of tolerance where he would have the medication benefits without unwanted side effects. PANS and Lyme and Bartonella kids have this issue with psychiatric medications - some more than others. Our son is very drug sensitive. The Topamax is helpful with intrusive thoughts. That said, the best medication for intrusive thoughts and other OCD symptoms due to PANDAS, Lyme, or Bartonella is the right antibiotic over time and a supportive environment. The psychiatric medication will at best "contain" psychiatric symptoms at a manageable level. Our son also takes Lyrica at bedtime to help with the deeper stage of sleep needed to "reboot" the immune system. He was also having sleep issues and the Lyrica has been very beneficial for that all around. Recently we added a very low dose of Tenex. This is an old blood pressure medication that the VA "accidentally" found helped to decrease the intrusive thoughts and distractibility in their soldiers who had post traumatic stress. We give our son 1/4 of a typical dose after school. You might be interested to know that Tenex (Guanfacine) is the actual ingredient in Intuniv - just a shorter acting version which works for our son as he is so drug sensitive. 3). That brings me to the last bit of information that I have to offer: Check out the ILADS website and download (for $15.00) the 2011 conference presentation titled "Lyme Co-infections and other Opportunistic Groupies." (I hope I have the title right - I remember the 'opportunistic groupies' phrase for certain.) The first quarter of the presentation covers Bartonella and it is excellent. It mentions that when treating Bartonella it is essential to have a therapeutic environment for the patient due to the intensity of the psychiatric symptoms which often get worse before they get better. That would be supportive family, teachers, school, doctors etc. Some patients have required hospitalization due to the nature of their psychiatric symptoms - but those are the worst cases. I mention this last bit just to let you know that it is not unusual to be dealing with terrible psychiatric issues when trying to treat Bartonella. Kids with Bartonella (and/or PANS) are very difficult to medicate for psychiatric issues. They need individualized approaches from health care providers who understand the impact of these illness on the developing brain. Usually the psychiatric symptoms associated with Bartonella have to due with increased neurotransmitter excitability from the inflammation. I hope this is helpful and I wish you the best.
  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 alone. (There is a lot of literature about this regarding the use of Rifampin to treat TB.) 4). Starting and stopping (and/or restarting) Rifampin is not the best practice. I know it is common to "pulse" Rifampin. However, the medical literature frequently states that "flu-like symptoms" often occur when the Rifampin is restarted (who knows if this is actually a Bartonella Herxheimer in an undiagnosed patient rather than "flu-like symptoms.") Allergic reactions to Rifampin are also more likely when pulsing this antibiotic. Most of all the risk of developing a Rifampin resistant strain is the biggest reason not to stop and start this particular antibiotic. 5) Overall, due to the rapid replication of the Bartonella organism (days)it is easy to fall back to square one in the treatment process when the Bartonella treatment is put on pause.
  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 Igenex test in September 2011 showed that, while my son was now IgM negative, he had become IgG positive! What does this mean? Does my son now have "chronic Lyme?" Has the Lyme managed to convert to cyst form even after oral Doxycycline and Flagyl and IV Vancomycin??? Or, is this a situation where he will remain IgG positive for a while after successful treatment. He is feeling well these days and has very few if any Lyme symptoms. Clinically, we could say he is better. Does the IgG positive test result mean his Lyme is not fully treated?
  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 of this co-infection can also be stimulating your child's PANDAS flare-ups. The dual diagnosis of Lyme and PANDAS means that it is essential to thoroughly treat all the co-infections along with the Lyme. Untreated Babesia, or any of the other co-infections, are often what is going on in so called "failed Lyme treatment." Do you have a Lyme doctor to help you with this? It sounds like your child also needs to have his high strep levels addressed with "better" antibiotic coverage. Better can be either increasing the dose or changing to another antibiotic. When you say that the Haemophilis titers are "out of range" do you mean they are on the high end or the low end (and therefore undetectable)? If they are high then that should be addressed too as it will trigger PANDAS flare-ups. The high BUN/Creatine ratio may complicate your treatment choices. Off the top of my head I cannot recall the meaning of a high ratio in the context of normal individual BUN and Creatinine levels. Maybe someone else will be able to offer some info. about this. I wish you the best as you seek to get this under better control.
  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 we will find something that he can tolerate and will help with the agitation, racing thoughts, and "paranoia" that comes and goes in cycles. I know that makes him sound bi-polar but he is not like this normally... meaning before we changed up his Bartonella medications. At the recent ILADS conference the docs said the Bartonella patients need a lot of psychiatric support.
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