HealingWell
Search Close Search
☰

.

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/9/2017 2:30 PM (GMT 0)
.

Post Edited (1000Daisies) : 5/14/2021 8:11:57 PM (GMT-6)

Posted 10/9/2017 3:11 PM (GMT 0)
I thought that was bart, but I just looked in Buhner's bart book and it says approximately every five days new bacteria is released into the blood.
Posted 10/9/2017 3:13 PM (GMT 0)
I haven't been able to determine ANY lifecycle of my infections.... except I would have those severe GI attacks every 4-5 weeks, which was determined to be bart and I know that's not a lifecycle period but that was the microbe causing the cycle... That's the only pattern I could detect.

poor li'l guy.

-p
Posted 10/9/2017 5:41 PM (GMT 0)
bump
Posted 10/9/2017 5:45 PM (GMT 0)
OMG I could have written your post last school year when DS was sick pretty much every Tuesday (chronic fatigue/feverish feeling/chills at times) for the whole year with a couple of times when it was 8 or 9 days - even in his off week(s). I was never able to find an answer for that. Tuesday was the first day after he'd start his MWF cycle but it would happen on the off weeks too so that never completely made sense to me. We did re-hit babesia with malarone/art and it seemed to go away but it was also summertime when he is typically much better. So perhaps babesia?

Wish I could offer more.
Posted 10/10/2017 12:36 PM (GMT 0)
PS, one thing that we added in is CBD oil, Mint Chocolate Charlotte's Web Advanced, 3-4 drops once a day. This could be what helped him turn the corner but we can't be sure. Definitely going to continue it. We started it in June. His LLNP said to give it a month to build up in his system to see if it worked for him.
Posted 10/11/2017 3:51 AM (GMT 0)
i had the 7 day flare up cycle for the first year of infection it was primarily from babesia duncani. i think i'm also harboring a gram negative pathogen in the BLO family that has a similar lifecycle.

i think over time the bug lifecycle gets out of sync which can make it difficult to identify patterns.
Posted 10/11/2017 2:48 PM (GMT 0)
Hi, Yes it would be great to meet IRL! So glad your one DK is partly back in school - that is awesome!

It seems from Rikky1 and others it may be babesia or babs and bart - like you said, who the heck knows! DS's LLNP said babesia can take awhile to get rid of - we retreated because he was having breathing issues still - they had gone away and come back. Turned out it was myco again but could have been babs too because after that he got much better. And his breathing is finally a bit better but Myco numbers still up.

Like your DKs, he has always been worse in the fall/winter/spring. However, I'm happy and feeling VERY cautious to report that he has yet to miss a day at school this year - a first in over 3 years! CBD could be helping with that - we added it in June and do it daily with only a few skips. Just a few drops.

My answers to your post (and referring to only DS's sick days - except he was irritable all last school year - he switched schools this year and is in a better environment which I think is helping too:

Here are his current symptoms, which dont sound very bad but they are very debilitating to him on his bad days.

* moods, irritable, anger - YES
* headache (migraines over summer but no more migraines), center front, sides, top - NO
* nausea, mild - NEVER MENTIONED
* weak, YES YES YES
* no focus YES
* sleep disturbances, sometimes severe NO
Posted 10/11/2017 5:15 PM (GMT 0)
babesia takes far longer to get rid of for chronic folks than most LLMD's think. 6-18 months of focused babesia treatment is the norm not the exception. you also can't necessarily go by symptoms you can have it and it could be blocking healing of other pathogens even though you have no symptoms from it.

i did two 3 month stints of babesia then another 3-4 months which was staggered and i still had a decent amount if it floating around my system.

babesia is VERY persistent and i don't think most LLMD's deal with it long enough.

if you are chronically ill and can't seem to shake your symptoms after years of trying you may want to look into taking another look at babesia.
Posted 10/12/2017 2:15 AM (GMT 0)
I also had the 7 day thing - Babesia.
Posted 10/12/2017 10:29 AM (GMT 0)
Yes, your kid #2 sounds very much like DS. Fingers are doubly crossed here. Posts are confirming it's probably babesia so it's good you continue to treat it.

I bet next summer you'll see the real change - since it seems progress is made, at least for DS and perhaps your kids, most that season. DS worked outside - barefoot and shirtless a few days a week at a local marina this past summer. He lifted heavy boats but had plenty of easier work/rest during shifts so it seemed like the perfect combo with the sun - soaking up vitamin D.

For myco testing, LLNP uses whatever lab our insurance covers which has been LabCorp in past and is currently Quest so no specialty labs. That is why they test him pretty much after every LLNP appointment. Otherwise, his LLMD clinic doesn't do much testing since rest are unreliable.
Posted 10/13/2017 6:31 PM (GMT 0)
Sorry to hear this 1000Daisies.

I worry about fall arriving with the colder weather, too. I usually do so much better in the summer months.
Posted 10/13/2017 7:07 PM (GMT 0)
Just a thought for those dealing with sick kids. Have you ever looked into mold exposure at school? Schools are notorious for mold and other indoor air quality issues.
Posted 10/13/2017 8:54 PM (GMT 0)
to me the co-infections are the real devil behind our illnesses. they are very persistent and take a very long time to beat down. you can take what seems to be steps backwards and forwards for a very long time and get annoyed because we think healing should be linear. unfortunately it doesn't work that way.

herbals are always better because the multiple compounds in each herb has wide benefits and can not only beat down whatever prime pathogen you're taking it for but go after others as well in addition to support for the body's functions. alas on the other side they sometimes aren't enough to eradicate deep/prevalent pathogen colonies quick enough for our liking.

this is why i've always thought a combination of abx and herbs is the best of both worlds in a pulsed approach. that gives your immune some responsibility to help get these infections under control.

babesia and bartonella are both VERY persistent. heck they get into your bone marrow. we should definitely look to strengthen our immune systems as well as weaken the ability of the pathogens to protect themselves. we don't have to outright kill the buggers but if we weaken them our immune system can successfully deal with them.

my 2 favorite herbs for hitting Bartonella squarely in the jaw are Black Cumin Seed Oil and Houttyunia. They also have numerous other benefits not just killing. Worth some research its pretty amazing all the bennies they bring to the table.

I also like to throw some DMSO in the mix. This will open up your cells and cause serious detoxing as well as further penetration/effectiveness of the abx/herbs you are taking. DMSO is the right hook after the left jab (that is abx/herbs).

Wish more people would try this stuff out. DMSO is a natural sulfur compound which exists in our body and everyone on the planet. Safe as safe can be orally or topically but not much is known in the States since there's no money to be made from it from Big Pharma. Big overeas though.
Posted 10/14/2017 1:10 AM (GMT 0)
Rikki - just curious, is your DMSO suggestion sanctified by your doctor or you doing it on your own via research?
Posted 10/14/2017 5:12 AM (GMT 0)
i am 90% sure the answer to the original question is relapsing fever

https://en.wikipedia.org/wiki/Relapsing_fever_borreliosis

Relapsing fever is a vector-borne disease caused by infection with certain bacteria in the genus Borrelia, which are transmitted through the bites of lice or soft-bodied ticks (genus Ornithodoros).

Most people who are infected develop sickness between five and 15 days after they are bitten. The symptoms may include a sudden fever, chills, headaches, muscle or joint aches, and nausea. A rash may also occur. These symptoms usually continue for two to 9 days, then disappear. This cycle may continue for several weeks if the person is not treated

Posted 10/14/2017 11:08 AM (GMT 0)
So, so sorry to hear this and I agree with you about the puberty/hormones and change of weather. We've had an unusually mild fall here so I'm praying that's not what this streak of wellness is all about.

And while relapsing fever was an issue with DS for a long time, like your DS, it hasn't been for awhile now.

I agree that trying some new herb combos may be useful. Please continue to update.
Posted 10/14/2017 3:49 PM (GMT 0)

1000Daisies said...

Lapis_29 said...
i am 90% sure the answer to the original question is relapsing fever

https://en.wikipedia.org/wiki/Relapsing_fever_borreliosis

Relapsing fever is a vector-borne disease caused by infection with certain bacteria in the genus Borrelia, which are transmitted through the bites of lice or soft-bodied ticks (genus Ornithodoros).

Most people who are infected develop sickness between five and 15 days after they are bitten. The symptoms may include a sudden fever, chills, headaches, muscle or joint aches, and nausea. A rash may also occur. These symptoms usually continue for two to 9 days, then disappear. This cycle may continue for several weeks if the person is not treated

Do you still think that even though he doesn't have a fever?

very possible. lyme and borrelia manifest is different ways in different poeple, so yes he could have that without the fever.
Posted 10/14/2017 8:19 PM (GMT 0)
Hey 1000Dasies,
While I have no good info in regards to the original question, just wanna say that this thread has confirmed something for me that I've often wondered about.

I was born with Ehlers Danlos Syndrome, so some level of pain & debility / joint instability etc. has always been the norm. But when I began going through pre-puberty & puberty things went SO crazy!

Even the doctors & my mother noticed- although for quite awhile they tried to say it was all 'in my head ' .... Right up until even the docs couldn't pretend that anymore ( haha) I also had the seasonal issues going on as well...They tried to say it was because I didn't want to go to school! Which was nowhere near true!

I've long suspected that I had Lyme & Bart ( probably more) for at least that long, and think you've helped confirm that for me...

Anyway, so sorry your kids have to go through something similar. Hope your child is able to stay in school this year! Your kids are so lucky to have you digging deep & getting to the bottom of this for them !
Posted 10/18/2017 3:40 PM (GMT 0)

cr3ativegirl said...
Rikki - just curious, is your DMSO suggestion sanctified by your doctor or you doing it on your own via research?

oops forgot to answer this question. no my LLMD doesn't know i'm doing Houtt or the DMSO. DMSO has almost no contraindications so not worried about ruining the protocol.

as i've said before DMSO is not something well understood in the States. sure there are some who use it but its prevalence and effectiveness is much more widespread and accepted overseas in Europe and Asia. i'm in touch with several folks who use it along with Rife, herbs, etc.
✚ New Topic ✚ Reply