Santi
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My son is being treated for anaplasma, bartonella, lyme, and mycoplasma infections. For the past 5 months or so, he has been taking 250mg zithro once/day, 300mg rifampin once/day, 100mg minocycline twice/day, nizorol (prevent yeast infection). In addition, he takes lots of probiotics, various supplements, and pectasol to help chelate heavy metals. LLMD recently Rx'd bactrim as well (can't remember dose but 1/2 pill/day w/meals) which we just picked up from pharmacy and haven't started.
Anyway, thought I remember reading that Dr. J preferred 150mg of Rifampin twice/day vs. 300mg once/day for bartonella, and my son's LLMD was willing to switch to 150 bid vs. 300mg once/day. But, he said when he tried to call this in for him, the pharmacist told him the lowest dose of Rifampin is 300 mg. and we found that it comes in a capsule so it can't be cut in half. LLMD said we could try doing 300mg twice/day, which is the adult dose of Rifampin, but that it might be a lot for my son. My son is 11 and weighs about 98 lbs. So, pretty close to adult weight. I'm just really scared of how hard this is going to be on his body/liver and wondering if anyone else has had their children on that high of dose? We do get blood tests done monthly to monitor liver and have had no issues so far.
In general, my son is doing really well. But, he still has ocd issues that interfere w/his daily life. They are no where near what they were, but randomly come up throughout the day - like he has to pet the dog's ears a certain number of times, and he can't listen if both my husband and I tell him to do something at the same time - it has to be only one of us asking him, random stuff like that, that no one else would even notice if they were around him I don't think. But, I think he has more ocd thoughts than rituals these days. I mean, it's a huge improvement, but the ocd is still there. Physically, he also has terrible fatigue some days and when he is herxing, he has relentless insomnia and nighttime fears and in general, feels like crap. There has been so much other stuff going on - colds, loose teeth, etc. that his flare ups for things aren't as predictable as they were before, but the symptoms definitely come and go. He also gets traveling pains throughout his body, pain in his feet, "hot eyes", headaches once in awhile, and lots of upset stomach issues/lack of appetite. The stomach stuff I never know if it relates to all the meds though.
But, right now I am just really on the fence about doubling the Rifampin dose and hoping some of you may have experience with this with your children? Any thoughts are welcome and appreciated. I'm a little scared to rock the boat so to speak. Just thinking about his ocd, realizing that another one of his ocd things went away recently too and know we are making progress. It seems slow, but, maybe slow and steady is the way to go?
Thanks,
Laura
My son is 9 and 71 lbs. He takes 450mg 1X/day and tolerates well. Andrea
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I am trying to find the cheapest place to by Suprax. In the US the cost is between $500-$600. I found it for $192.00 at Quality Prescription Drugs in Canada. Anyone know of another place I can try? Andrea
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I recently have posted that I think my children have LYME or Bartonella in addition to PANDAS. Anyway my youngest is starting to have some troubling symptoms without a known trigger, usually I can tell the trigger. Well the PANDAS doc started him on steroids a few days ago but I see on this forum steroids are bad for lyme.
Please help me understand why steroids are not recommended for LYME? If my son responds well to steroids does that indicate he may not have LYME or coinfections?
Any information is appreciated.
My son has lyme and he was on prednisone for 1 week for his asthma. Much of his symptoms returned and they were HORRIBLE!!!! I called his LLMD and they informed me that steriods is NOT recommended if you have Lyme unless its absolutely necessary. Once he was off the steriod, he immediately improved. Andrea
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Dr Fallon is a well known lyme researcher. Are you asking if anyone here has seen him?
I am surprised he does not see children. Much of his research is done on neuropsychiatric disorders associated with Lyme and you see this is many children. Andrea
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Our Pediatrician has not pescribed this before but is taking tomorrow to look into and rap his head around LDN. He said if he is satisfied with what he has read, and with no side effects at such a low dose, than we start friday. I think this may help many with compromised immune systems. My son is chronicaly fatigued still after close to a year of lyme/bart tx. I think viruses are a big part of this. We are doing this transdermaly. Not through insurance, and from our local compound pharmacy. We'll see...
My son has been on this for about 3-4 months. It is used to help calm him down. Apparently, it can take up to 6 months for its effects to begin to work. Just recently we have been noticing a change in him. He is much less hyper, but seems a little tired, sluggish which we've NEVER experienced with him before. He actually started to play chess (can sit for 30 mins) something we've NEVER seen with him!! Andrea
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My DD10 has had problems since birth. Sound, light, touch sensitive, non-stop crying. Dark circles under eyes. Febrile seizures. Lost speach at 16 months after MMR vaccine. Speech therapy until 6, OT, PT diagnosed ADHD, inability to concentrate, delayed social development, bed wetting until age 8. Unknown bite 2008, motor/vocal tics began soon after which were exacerbated with strep infections, cleared with penicillin used to treat strep. Diagnosed PANDAS (but no testing), pediatric psych. refused to treat. LLMD found lyme/bart and she has been treated since June 2011, biaxin/rifampin for 4 months. All symptoms resolved. Handwriting improved, able to concentrate, tics gone, sound/light sensitivity gone, age appropriate behaviour, happy, hardworking at homework, wonderful little girl. Rifampin was stopped (we thought bart had been addressed) in Oct. By end of Dec all symptoms had returned - everything, all physical symptoms motor/voc tics, unable to play with kids at school etc. Restarted rifampin two weeks ago and saw the last tic two days ago. Completely different child and back to where she was in Sept. I hope the Abx keep working.
That's what happened to us. My son was on Rifampin and Azith but I can't say all symptoms disappeared but the worst of it did (rages and anxiety). Since he became extremely hyper we had to change abx and symptoms started to return. Then he was put back on Rifampin and Biaxin and ALinia and we are going on our 5th week and just beginning to improve once again. We are starting to see a very different child. I pray that it keeps going. Andrea
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In retrospect, since birth I noticed symptoms. At 2 is when the agitation and psychiatric symptoms got REALLY bad and thing got worse year after year. She is EXTREMELY ILL and non-functioning. I saw the bactrim and mino help at first, but like everything we try...it helps for awhile and then she spirals out of control again. It is just awful and I am so dang depressed about not being able to get her some relief. Ugh!!! How old is your child? Sorry if you mentioned it already.
Hi Lily, I am so sorry to hear how tough its been. We are in the same boat. I also noticed problems around the age of 2 and by 3 I was visiting a psychiatrist. He is 9 years old. How old is your daughter? My son has been on treatment for about 5 months and we are still trying to stabalize him on the right abx. For him, what seems to work best is the Rifampin. His LLMD seems to think that the Bartonella is his biggest problem and the Lyme is only secondary. When we took him off of the Rifampin his symptoms began to resurface. Now that he has been back on it for about a month, we are seeing improvements again. I am sure your doctor will find something new if its not working. Where do you live? Andrea
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My child has bartonella and lyme and also has a huge amount of psychiatric symptoms.
How old was your child when you first new something was wrong? Have you noticed that treatment is working? Andrea
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Hi Santi,
do you think your son could have PANDAS?
you mentioned facial tics starting and handwriting worsening. Those (along with severe OCD) are kind of hallmark in PANDAS kids.
I just wanted to mention that- in case you have not looked into it.
Best Wishes.
Wilma- have you tried Rilutek? IT seems to help treatment resistant OCD. If you cannot get a doc to prescribe it- there is a study in NIH for it.
My son has Lyme and Bartonella and a huge portfolio of psychiatric problems (which may all be due to lyme??). We have gone down the PANDAS route and its unlikely he has it. Andrea
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can anyone tell me if there OCD or someone that they know of, has OCD so severe that they are stuck doing the same thing over and over all day long. they don't shower, can't hold a conversation, forget to eat or go to the bathroom??? my girl has been like this since a very young child. any stories and similar situations. thanks>
My 7 year old son has significant OCD. We have yet to figure out if its truly OCD or tics. He is constantly repeating what others say, and do, its extremely difficult to have a conversation with him (since he's always repeating), and he does the same things over again (i.e. certain movements, gestures, etc.) His writing was beautiful and now he has a need to place hooks at the end of letters, and its become messy. I can tell he needs to retrace the letters which takes up a lot of extra time. He's starting facial grimaces and neck jerks. Of course, stress aggravates everything. He's been seen by a neurologist and she couldn't tell yet if it was OCD or tics. He does take his baths but I notice that he "holds it in" especially at school. The "not going to the bathroom" thing you mentioned may be in fact OCD, not that she is forgetting to go. Watching your child have OCD is really tough. Andrea
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Hi Lyme Mom,
My son is also 9. He has a huge portfolio of problems but I would rate rage/anger/irritablity the worst. He has a diagnosis of Lyme/Bart and borderline Babesia. His Lyme doctor believes that the rage is mostly from the bartonella. If your child has lyme, I would definetely check for the co-infections. Bart is notorious for rage as I'm learning. My son was taking Rifampin and Azith but we've since switched. I must say that it has worked very well on the rage/anxiety/anger piece. We are truly thrilled about this. I can actually touch him now and he doesn't tear our house apart. Good luck with this! Andrea
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We are now replacing Rifampin and Azith with Biaxin and Alinia. Has anyone had experience with these? Andrea
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Hi Can anyone help with a better understanding of my results? Both IGM and IGG according to Igenex and CDC are negative, however, I have a lot of INDERTERMINATES plus 2 out of 3 children tested positive. One on Igenex and one regular lyme western from labcorp.
IGM
30 kDa +
**31 kDa IND
**39 kDa IND
**41 kDa IND
58 kDa ++
**83-93 kDA IND
IGG
**39 IND
**41 ++
I have always called Nick Harris at Igenex to go over my test results. He has always been very helpful. Andrea
Thanks,
Tami
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Yes, very much so. I appreciate this information. Andrea
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My 9 year old was prescribed 1mg of Naltrexone for his hyperactivity. It is a very low dose narcotic. But the fact that its a narcotic makes me nervous. Has anyone had any experience with this? Andrea
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My 9 year old son has been on this for about 2 months. It has helped with his anxiety. However, he is being taken off because he has become extremely hyper and his eosiniphil count is elevated significantly. According to his LLMD, Rifampin can do strange things to the blood. But, it does work great on Bartonella, in our case at least. Good luck! Andrea
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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.
With the exception of swolen glands and frequent sore throats, his symptoms are mostly psychiatric. These include: rage, anger, agitation, ocd, anxiety, adhd, sensory issues, and sleep issues. His doctor thinks that his problems are more Bartonella than Lyme. We are definetely seeing the improvements being on the Rifampin. His anxiety is down. Now we got to work on bringing his ADHD down. You have been very helpful! Andrea
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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!
Excellent info here RN mom. I have 2 questions: 1. Re: skin - I always wondered about my son's cheeks. They are red with white spots in it, like there is no pigmentation. When I press on it, it becomes completely white. I believe you called it blanching. I wonder if this is the Bart?? 2. You mentioned cycling probiotics. We do 100 billion per day. My son takes 2X 50 billion a day several hours away from the abx. Is this what you mean? Andrea
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We began treating our ds (now 15) for Lyme in the fall of 2010. The oral antibiotics kept him from getting worse (and triggered a lot of Herxing). However, he was still in bad shape by Spring of 2011 so we got a PICC line into him and he had 12 weeks of IV Ceftriaxone. He made a miraculous recovery of his cognitive abilities, communication, muscle control, feeling of well being, and quality of life.
After the Lyme treatment we tackled the Bartonella. We are using a combination of Rifampin and Azithromycin. We "pulse" the Rifampin 5 days a week (Mon. through Fri.) and switch to Azithromycin on weekends. He also gets Tindamax on weekends to protect the gut from c-difficile. Of course we use many different types of probiotics daily as well as Vit D, Calcium, Vit C, Magnesium, Folic Acid, Vitamin A, Curcumin, and Qucertin Bromelaid. This week we will also add TMG (lots of B vitamins).
Bartonella is notorious for neuro - psychiatric symptoms which our son had an abundance of. These really flared up badly when we first began the Rifampin / Azithromycin. We understood it to be Herxing. Initially, the Herxing was almost constant with a few really awful days followed by a few "less awful" days cycling over and over without end. Eventually though he began to have a few good days every week or two. These brief periods of improvement would be followed by the return of the terrible herxing and neuro-psych symptoms. Gradually, the cycle lessened in intensity and the good stretches lengthened. Now, when he Herxes and has a flare up of neuro-psych symptoms they are significantly milder. It has now been 6 months of treatment with Rifampin / Azithromycin for Bartonella. We are aiming for a full year of treatment.
This note is especially written for Wilma Jenks (whose posts really pull at my heart). Treating Bartonella is not for the "faint of heart." It is very difficult, the Herxing is horrible, the patient needs tremendous support, and (worse of all) it takes a really long time to successfully treat it.
Bartonella looks like PANDAS. And, to make things even more difficult, if your child has PANDAS (as our does) the Herxing will flare up the PANDAS symptoms. The treatment process is a juggling act between managing the PANDAS and the Bartonella symptoms and Herxing.
We tried Bactrim for our ds15 in January 2010 ... thinking it would help for the strep. It had no effect on him except to give him a rash (we did not know about Lyme back them and possibly that was a Herx). We have found the Rifampin / Azithromycin combination to be excellent for Bartonella. It is most often used for Bartonella by many LLMD's. Another combination that is used is Rifampin / Doxycycline (although some clinicians feel that the Doxy interferes with the action of the Rifampin a bit). Other good antibiotics for Bartonella are Cipro and Levaquin. I agree with the other parents who are encouraging you to talk with your LLMD about your child's response to Bactrim. Try doing some reading about treatments for Bartonella (easy to find on the net). Consider discussing a change in antibiotic protocol for the Bartonella. The good news is that many of the Bartonella treatments also address Lyme (which is still highly suspect in your child's case in my humble opinion.) I will keep you in my prayers. God's grace and goodness will sustain you and your child every step of the way - even when things seem bleak He is always there.
Thanks so much for posting this. It is very encouraging. My son will be 9 and he is also on Rifampin/Azith. I agree, it has helped with the Bartonella because his anxiety/anger/rages/OCD has decreased significantly. But, he is very hyperactive which has me worried. His eosiniphil count is elevated. His doc initially thought it was the Rifampin, and now we are leaning towards the Azith. I think the next step is to switch the Azith to Doxycycline. I've heard that not to many people can tolerate this because of stomach upset. May I ask what types of behaviors you were dealing with due to Bartonella? Andrea
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Thanks everyone for the feedback. His WBC's (eosiniphils) are quite high since starting the abx. His LLMD thinks the activity might be due to the high count which is an allergic reaction possibly to the Azith. I meet with him next week. Andrea
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I know I sent this message before, but I was hoping to get some more feedback. I have never seen my son so hyperactive like he has been for the past 3-4 weeks. HE is currently on Azith. and Rifampin. His anxiety is down, Yah!!!! He is happier, more affectionate, much less agitated, angry and we've had no rages in a long time. HOWEVER, his hyperactivity is through the roof. I've never seen him this way before. Maybe when he was on CELEXA 3 years ago. Manic, not sure, but I have thought of it. He is driving his teachers nuts, he's been in the office twice and he's twirling like a tornado all day long. What is this? Is this part of the healing process? Anyone deal with this? Andrea
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Does anyone have any experience with this? My dd (10) has a cellulitis infection on her lower leg that the doctor says is probably due to a staph infection. It looks like it is now on her face. She started Keflex 500mg bid on Tuesday. I plan to take her back to the doctors tomorrow or Wednesday, but was wondering if I should be more concerned.
I had cellulitis a couple of years ago. One day I could not get out of bed. The fatigue was so overwhelming. Then, I think I got a fever. The next morning I woke with a horrible red rash all over my lower right leg. I got treated with abx (not sure what) and it got better fast. Andrea
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My son has been off of Rifampin for over 1 week. Now he's been off Azith for about 3 days (checking to see if he is allergic to either one). After 3 days of being off the Azith, the anxiety has surfaced. He has begun to wet himself, destroy items and have meltdowns. Is it possible for such behaviors to return in such a short time? We did not see this when he came off of the Rifampin. How bad is it anyway to come off of abx so abrublty? We need to wait till Monday to recheck his bloodcount. Andrea
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Andrea,
So glad you are seeing progress!!!!!! It will be rocky but over time those improvements should stick. We have had high eosiniphil count in the past while on a single use antibiotic and it wasn't from rifampin. I would continue to follow for your Dr. but I do not 'think' it is anything to be too concerned about. Since we share the same Dr., I have a little perspective on how well he understands he adverse effects of antibiotics. We were taken off Rifampin when my older DS spiked really high fever and vomited during his Lyme herx cycle. It was just too much for him at the time.... his body didn't like it.
We were also taken off Biaxin when his eyes started to yellow and his liver enzymes climbed. BUT, some of those symptoms are from specific infection like Babesia and not specifically from the antibiotic.
Looking forward to hearing continued improvement. Wendy
Per our LLMD, I took my son off of Rifampin and now Azithro to check his eosiniphil count in 1 week (this will be 2nd week off of Rifampin). You mentioned that your son was taken off abx as well. How did he handle the removal/change of abx? Did his symptoms return? Andrea
Suprax ABX
in PANS / PANDAS (Lyme included)
Posted
The generic version of this is called Cefixime which is not sold in the US. I believe I may have found the cheapest at quality prescription drugs in Canada. Andrea