posted
my child was having an altered mental status period that lasts for 7 days and happens every four weeks. we are about to treat him for encephalitis but then did the igenex test and babesia microti was positive. anyone have these kind of symptoms or any symptoms that happened for just 7days once every month?!
Posts: 12 | From New Jersey | Registered: Jan 2016
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Tincup
Honored Contributor (10K+ posts)
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Welcome To LN!
Sorry to hear about your little one. Glad you are checking out information to better inform yourself. GOOD MOM!!
Is there any chance, you may not know, your little one has "relapsing fever" too (Borrelia miyamotoi)?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Back again. I was trying to find the replication cycle (number of days it takes for Babesia to reproduce) which I finally found a while back and now don't remember where I saw it. Ugh!
Anyhow, people vary in their symptoms, so you can't really rule anything out. We do know when treating Lyme or Babesia that "herxes" often occur on a 3-4 week cycle and the organisms are killed during the replication cycle.
So, having heavy symptoms every 4th week would sound about right. Some with babesia have very mild symptoms, and for some it can be a wicked ride. We often have good days and bad mixed in with each other.
I got what I use to refer to as "spells"- before we even knew what Lyme was- and they were every 3 weeks or so.
We do know females can experience a big increase in symptoms that makes their monthly "cycle" very nasty and problematic. Sometimes hormones are messed up due to infection or inflammation, so we kind of expect that to happen.
Relapsing Fever may not be detected on tests that were run for your child, and that cycle (worst of the symptoms) tends to be monthly.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Since you are in NJ, I am concerned about bartonella too. It tends to cause psychosis, perhaps more than the other tick borne infections. Not always, but generally.
If you go to this website and type in 'psychosis' you will see some articles that may be of help.
Hope that helps you in some way. Please feel free to ask away. We are pleased to assist you in any way we can. Hoping your child is feeling better soon! You too!
Developmental delay or regression Apathy—Irritability Hypotonia Weakness Tremor Involuntary movements Seizures Ataxia Anorexia Failure to thrive Poor weight gain Poor head growth Poor socialization Poor motor skills Language delay Speech problems Lower IQ—Mental retardation Anemia Macrocytosis
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
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- The cyclical nature has me wondering about some kind of chemical exposure, too, if in a school or anywhere else where certain tasks are done on such a time line and certain cleaning or other chemicals might be used.
Or, exposure to a hair cutting shop, riding in a new car only every so often, etc. . . . just other things to consider. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
i've had Lyme long enough to know that anything can happen with Lyme. iIf Babesia is positive, then possibly Borrelia, Bart and Myco might also be present. What good luck that your doctor did the Igenex test. I know from my own experience that
psychological problems from Lyme can be rapidly reversed with Cats Claw. Cats Claw crosses the blood/brain barrier. It is gentle to take (which made me think it wasn't doing anything to help me) and in a very short time, I was back to a normal mental state and the frightening dreams, etc. were totally gone as
well as a dozen other Lyme related problems. I'm currently treating myself for Babesia using Sida Acuta which is recommended by the world renown herbalist who specializes in Lyme - Stephen Buhner. He has a website; Buhner Healing Lyme if you decide with your doctor to treat with herbs.
Anyway, good luck. I hope everything turns out well.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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posted
I am going to see dr. j end of January I hope we can get to the bottom of this. I am so overwhelmed. also looking into autoimmune encephalitis. I am not sure which avenue I will treat because its all guesswork. any info will help from you all!
(deleting last name of LLMD per LN rules)
[ 01-17-2016, 11:38 PM: Message edited by: Robin123 ]
Posts: 12 | From New Jersey | Registered: Jan 2016
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
babesiosis can cause some serious nasty neurological and psychological effects. Of course, so can Lyme. Bundled together, they can be beyond a nightmare. The good news is that there is hope with treatment. Best wishes to you and your child. Hugs.
Posts: 1431 | From USA | Registered: Mar 2015
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posted
Saw your 'bump' as well as the earlier posts. Finding a good Lyme Literate Medical Doctor (LLMD) or Lyme Literate Nutritional Doctor (LLND) is really the best way to go about trying to uncover such a question(s). Many symptoms of tick-borne diseases, autoimmune conditions and/or deficiencies can overlap making it difficult to figure out the root cause of issues/symptoms.
There are also some good books and websites out there to help better inform you. A good place to start: Stephen Buhner has several books, among them - 'Healing Lyme' & 'Healing Lyme Coinfections'. Buhner also has a website, and both may provide you with some good info & insights which could help.
Additionally there are some good threads on this forum where many have provided links regarding detailed symptom lists as well as treatment suggestions and other informational links that may help. Try doing a search using key words. There's never just one way/answer that works due to the type of condition/infection(s), physiology, genetic factors, environmental factors, etc.,...
It can be a frustrating and exhausting journey trying to find the answers, but having a knowledgeable and compassionate doctor on your side is huge. Doing your own research to become better informed, in order to be an advocate for your son will also make all the difference.
All the best to you and your son, and hope you find some answers.
Posts: 114 | From California | Registered: Jan 2016
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posted
we saw dr. j. he said its totally the coinfections and he gave us 3 antibiotix to start with. Im not convinced but Duke brain disease clinic found nothing so this is the only Dr that said he is fixable with confidence or at all actually!! Looking into cats claw now.
Posts: 12 | From New Jersey | Registered: Jan 2016
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posted
we saw dr. j. he said its totally the coinfections and he gave us 3 antibiotix to start with. Im not convinced but Duke brain disease clinic found nothing so this is the only Dr that said he is fixable with confidence or at all actually!! Looking into cats claw now.
Posts: 12 | From New Jersey | Registered: Jan 2016
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posted
Listen to Dr J helped all three kids of mine! The coinfections can be worse than the Lyme sometimes...also read all of Buhners books how each one effects each system
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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DS, a teen, is at J in DC. Cycles every 20 days or so with bad flare of his own symptoms, not psych though. He has positive Lyme and mycoplasma tests, not tested for babs but has many symptoms. Being treated for all 3. Only thing we were told not to use was Cat's Claw.
-------------------- Parent of teen with late stage Lyme, mycoplasma, bartonella and babesia. Dx Nov '15, in remission early to mid '18.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yan is right.
Just my thoughts. If Dr. J in CT didn't recommend cat's claw, I would NOT add it to what he has prescribed.
If something goes wrong it is not fair to your child first, and then especially for Dr. J. If there is a sudden allergic reaction and you've added more to the mix, then forever you can't use any of those things because you can't pinpoint which is causing the allergy.
You pay Dr. J to recommend what is best and that protocol needs to be followed, so if he didn't order it I would NOT do it.
If this were a lesser Lyme treating doc- like Joe Ding Dong on Carmel Street- it is always wise to do your research, but still always run it past the doc before doing it.
But you have the best doc on this planet for kids- no one better- so I'd do what he says and not play with other herbs or meds.
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