RNmom
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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!
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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!
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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!
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Here's a link to BCH's Facebook page: http://www.facebook.com/search/results.php?q=BCH&init=quick&tas=0.6435825145516316#!/BostonChildrensHospital?fref=ts
Lots of folks are commenting on this sitation.
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.
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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.
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He had mild headache all day yesterday, and even this morning. Sort of interestingly - he wet his bed last night, and has had a couple very minor head tics. He had this after IVIG too. Hasn't done that in months. It was always the first thing that would happen with an exacerbation, and he did it for 2 weeks or so following both of his IVIGs (ahtough all other pandas symptoms improved dramatically )
weird. Thanks for all the advice. My sister is unable to take Septra. Weird thing is DS took it for 2 week (first week was fine, second week a couple mild headaches and diarrhea) had about a week off due to diarrhea - then we gave him ONE does and BOOM - massive reaction within hours.
We did some mercury testing years ago - he was neg. This was prior to pandas DX. Will ask LLMD about methylation - I've not started to research that. I see all the posts on it, and haven't had the energy to begin to try to understand it. Do think we need to look at it. I need "methylation for dummies" book or website if anyone has a recommendation!
I was going to do IVIG last week - and insurance denied pre-certifiaction. I'm actually kinda happy that happened because it gave me longer to see how he reacted to the septa, and that fact that his mood is better and "streaks" seem to have faded. So, enough evidence that antibiotic to target bartonella may be a game changer for DX. Wish us luck...
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.
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I just took some photos of the rash and put them side by side with the photos I took 3-4 weeks ago. They are definately faded. No doubt. About half as many streaks and less intensity. I don't think strech marks can fade that fast - but I'm not sure. He did loose a little weight on the Septra - it reduced his appetite.
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.
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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.
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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.
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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.
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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...
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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?
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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.
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she is not as aggressive as on the bactrim. i am able to get it into her which is amazing, since she gets violent with everything i try, but it does not help her with sleep. up till 3am every night staring at computer. just absolutely stuck. on the bactrim, she was starting to be able to get her self dressed and to sleep, but she was a bit aggressive. ugh! actually, i think i would take her being a tad aggressive instead of up all night with severe OCD. Cipro. does not seem to be touching much. anyone else have this experience?
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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was cipro activating for your child and keep them up at night? does it get better after a couple of days?
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 Cipro to Clindamycin 600mg BID. He then had a big Herxheimer for all his Bartonella symptoms. We then decreased his Clindamycin down to 300 mg BID. Things got better for a week but I think this Bartonella is currenlty Herxing on a weekly basis and the psychiatric symptoms are tough to manage. Throughout everything, he remains on continuous Rifampin 600mg at bedtime. He is still having lots of psychiatric symptoms and we are trying to find the right psych medication that will support him through treatment for Bartonella. Fortunately, he can sleep. He takes Lyrica for that. That's all I have to share right now. We are in the middle of figuring things out right now. If we get these psychiatric symptoms settled down I'll let you know what helped.
But, yes, in answer to your question: Cipro caused a number of neuro-psych symptoms for our child. It lowers the seizure threshold in susceptible people and can cause a number of other side effects. It can be a difficult drug for some people to handle.
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Can you tell me how long you saw herxing with this mino. and cipro. combination. I know every kid is different, but was wondering how long you saw it the herxing last before you gave up?
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. However, we just changed his Azithromycin to Cipro (both of these have been combined with Rifampin which he remains on continuously). I hope this is helpful. Try to stay the course with this antibiotic combination. It is a good one for Bartonella. Bartonella takes 6 months to a year to treat. Hang in there!
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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 resistance builds up pretty fast.
In my child's situation he was on 3,000 mg to 4,000 mg of Augmentin XR for 6 months and it never touched his obvious Bartonella rash or his Bartonella symptoms. I am a little concerned that your child might not be getting the Bartonella coverage needed (as evidenced by the return of the rash). So far, my ds15 is doing well on continuous Rifampin and Azithromycin (Mon. thru Fri.) with Tindamax on weekends. If your child really can't take Rifampin anymore I would encourage you to talk with your doc about Cipro or Levaquin (if possible).
Hope you are o.k. with such a "blunt" response. Good Luck - I think the Bartonella is coming back in full force.
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 raises the possibility that a resistant strain will emerge.
I do not mean to be scary - just want to get the info. out to you. I hope that you are able to sort things out.
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DS, who has always (since 4 month shots) had red cheeks is undergoing a change in appearance. We changed one antibiotic from Ceftin to Minocin and now the redness has changed from below the surface of the skin to rough sandpapery redness on the surface of the skin. I am hopeful this is the medicine doing its job.
I know I have posted about this before, but has anyone went through these stages with the red cheeks? Hopefully, someone will confirm what I am seeing as a Herx reaction.
Here's hoping we are one step closer to getting well. Also, the hump between his shoulders is getting smaller, but the ability to concentrate is getting worse.
Cobbie
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 cheek rash is also "like sandpaper" in texture. If I press on it it will "blanch." That means there is a vascular component (Bartonella is known for vascular rashes). I will say the only thing that has had an impact on the "red cheek rash" is Rifampin treatment for Bartonella. After 4 months of Rifampin this rash has actually almost disappeared for brief stretches of time (5 days tops at any one time). However, it is not completely gone yet. It "cycles" back in weekly.
Right now his red cheek rash has got my attention again because we did a trial break of the Rifampin last weekend. I have been against "pulsing" Rifampin for a number of reasons (that is for another post) but I finally agreed to try it and stopped the Rifampin last Sat. and Sun. To my dismay my son's cheeks, which were pretty well cleared up, got redder and redder over the weekend. Sure enough by Sunday night he said "I feel agitated but I do not know why." Mild OCD followed. It took a full week of being back on rifampin before he "calmed down" and the red cheek rash began to clear up. Sadly, it is not all gone yet. After I shared this with his LLMD, we agreed to keep him on Rifampin continuously and "pulse" other things instead.
Interestingly, the weekend following our "Rifampin break" my ds15 had a big Herx from his usual weekend pulse of Tindamaxn (he has been doing this since August). I think there was a lot more Bart in his system than usual and the die off was bigger. As a result, by Sunday evening he said, "I do not know why but I am feeling agitated again." His agitation was observable... and of course his cheeks were redder - and like sandpaper.
I have wondered about this red cheek rash that looks like sandpaper for a couple of years now. Frustrating that no one has been able to give me a good explanation of a symptom that is so consistently observable and consistently associated with flare ups of other serious symptoms. It means something. This is the first time I have been able to track s series of events that points to his Bartonella as the possible explanation for his red cheek rash. I will keep on tracking this rash. Hope this helps.
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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 o.k. to take it. Two family members being treated for Bartonella are taking it (I am one of them) and we are doing fine so far.
300mg 2 tx / day is a good dose for Bartonella and also for staph. I hope the treatment helps you - it does take time (@ 6 months or more to treat Bartonella).
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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 resistance builds up pretty fast.
In my child's situation he was on 3,000 mg to 4,000 mg of Augmentin XR for 6 months and it never touched his obvious Bartonella rash or his Bartonella symptoms. I am a little concerned that your child might now be getting the Bartonella coverage needed (as evidenced by the return of the rash). So far, my ds15 is doing well on continuous Rifampin and Azithromycin (Mon. thru Fri.) with Tindamax on weekends. If your child really can't take Rifampin anymore I would encourage you to talk with your doc about Cipro or Levaquin (if possible).
Hope you are o.k. with such a "blunt" response. Good Luck - I think the Bartonella is coming back in full force.
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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.
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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
Blurry vision or red or dry eyes
Ringing in ears
Swollen glands
Chest "tightness"
Stomach pain
Calf pain
Muscle twitching anywhere - especially in calves
Shin bone pain
Pain on soles of feet - especially in the morning
Bilateral join pain - always on right and left at the same time
numbness, tingling, or burning sensation of nerves
Anxiety
Difficulty falling asleep
Abnormal labs such as low white blood cell count, low platelets, high liver enzymes, elevated sed rate
Psychiatric symptoms such as agitation, mood swings, rages,
I highlighted in bold the ones that are most often talked about as symptoms of Bartonella.
Regarding your probiotic question. 100 billion units a day is really good. I use schedule of 4 tx / day to keep a steady state in the gut and improve my chances of achieving 100 billion units a day. If you are getting there in two doses that is great!
I hope this is helpful.
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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.
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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 rash - it really looks like a glove and is a vascular kind of rash. You can press on the skin and it will blanch. Often this occurs hours before his agitation starts.
4) Red cheek rash that has the texture of sandpaper. This is another symptom that appears just before the psychiatric symptoms emerge - it is a very reliable warning sign.
5) The soles of his feet are painful.
6) A red rash that looks like red stretch marks on his hips. This rash was our first clue that he had Bartonella. This rash is considered to be 100% diagnostic for Bartonella. This rash can look like spider veins as well. You can tell they are not spider veins because some will grow horizontally or cluster in little "nests" or line up side by side - spider veins (varicose veins) do not do this. Other rashes are deep vascular bruises that do not go away over time (as a real bruise would). This rash does not cycle in and out - it is fairly stable but we hope eventually it will go away.
I hope this helps.
Bartonella takes 6 months to a year to treat successfully. Herxing during treatment can be difficult to manage.
Rifampin is a very good antibiotic for Bartonella. You need to combine Rifampin with another antibiotic to offset the high incidence of drug resistant organisms to Rifampin. Azithromycin, Cipro, and Doxycycline are three good antibiotics to combine with Rifampin. Doxycyline is hard on the stomach so take with food! Take Rifampin at night and preferably on an empty stomach otherwise the food will decrease the absorption of the Rifampin.
Do not stop and "restart" Rifampin!!! This will increase the possibility of certain side effects such as thrombocytopenic purpura, kidney problems, and flu like symptoms upon restarting the Rifampin. Also, there is an increased potential for developing organisms resistant to Rifampin when restarting after a long break. (The presumption is that if you need to restart you stopped it too early and the organisms left behind had a chance to develop a resistance to the Rifampin.) This thought process is well established in the treatment of TB with Rifampin. It is very possible that this could happen with Bartonella. Some practitioners like to "pulse" Rifampin and have patients take weekends off or some variation of that. That is o.k. (as far as I understand it) as long as the break is a short one and you remain on the other antibiotic (Azith or Doxy or Cipro) while breaking from the Rifampin. That said, our doc is not having us pulse our Rifampin - just monitoring us closely and we are dong fine.
Yes, several family members have Bartonella and are receiving Rifampin and Azithromycin. One may also be treated with IV Levaquin or Cipro if she does not improve.
Monitor liver and kidney labs at least monthly.
Take LV-GB Complex caps (by Designs for Health) or some supplement that helps detox the liver and support the gallbladder.
Maintain a strict daily probiotic replacement regimen: probiotics 4 tx a day. Cycle your probiotics.
Fight inflammation with Curcumin and Quercetin Bromelaid 3 tx a day. Also, Vitamin C and Vitamin D.
Hope this helps.
I do not post on-line, or discuss by phone or e-mail, the names of the doctors we are seeing at their request. However, I encourage everyone to read the Lyme Treatment Guidelines by Dr. Burrascano that he has posted on line. They are made available on the ILADS website. They are his 2008 guidelines. He has sections on Bartonella and other coinfections as well. Our doctors follow a lot of those guidelines:
Advanced Topics in Lyme Disease. Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illness. By Joseph J. Burrascano <http://www.ilads.org>
Good Luck to everyone and stay the course!
Please Help: Need Lyme doctor in Southern California (Orange County)
in PANS / PANDAS (Lyme included)
Posted
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!