Anyone treat bartonella imporically?

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Xelaetaks
Regular Member


Date Joined Jan 2013
Total Posts : 347
   Posted 12/2/2014 10:08 AM (GMT -7)   
It seems for bart there may not be a definitve test. I sometimes get scratches show up once in a while over the past year which I thought were from parasites like nematodes now I wonder if it could be bart. Also feel stuff around my neck and even top of my head despite having clean mri's. May ask llmd about this on a follow up visit.

Anyone think trying a bart treatment could make sense?

Thanks

cccmama3000
Regular Member


Date Joined Jul 2014
Total Posts : 256
   Posted 12/2/2014 11:39 AM (GMT -7)   
yes. My Bart test always came back negative, but I had pretty bad bone/muscle aches which are generally associated with Bart. My LLMD decided to start treating Bart and now my pain is virtually gone.
2003 Found 2 ticks on me, never got a bulls eye rash
symptoms: anxiety, bone pain, joint pain, brain fog, twitching, numbness, tingling
6/2014 - diagnosed with Lyme and Babesia co-infection
08/14/14 started ABX DOXY, 9/3/14 PICC Line
acupuncture, Chinese herbs, eliminated sugar and gluten

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4012
   Posted 12/2/2014 12:14 PM (GMT -7)   
cccmama3000 -

Would you care to share your successful bart treatment?

thanks if you do
Classic Lyme symptoms 25 yrs ago, Drs did nothing. Roller coaster since, but functioned. Nuero. ABX 2013 LLMD. Noticeable improvement @ 6 months, plateaued and a little backwards. Waiting to see the light again.

cccmama3000
Regular Member


Date Joined Jul 2014
Total Posts : 256
   Posted 12/2/2014 12:32 PM (GMT -7)   
Hi Astroman,

I started Bactrim really helped with my Bart. I am taking Doxy and have a PICC line and get Rochephin 2g daily for Lyme. I also do other stuff that I think contributes to me getting better overall:

Green Juice EVERY morning
Supplments - CoQ10, Calcium/Mag, Vitamin C, Methyl-B complex, Methyl B12, L-glutathione, Zinc
Cod Liver Oil
Dry Skin Brushing
Oil Pulling Every morning - Sesame Oil
Virgin Coconut oil - down there to prevent yeast infections
Acupuncture
Cupping
Chinese herbs
green tea - loose leaf
Detox patches on foot most nights
I try to do Epson baths but don't do them as much as I would like

I know its a lot, but I feel so much better. I am sure a lot of it has to do with the ABX, but the other stuff sure does help too!
2003 Found 2 ticks on me, never got a bulls eye rash
symptoms: anxiety, bone pain, joint pain, brain fog, twitching, numbness, tingling
6/2014 - diagnosed with Lyme and Babesia co-infection
08/14/14 started ABX DOXY, 9/3/14 PICC Line
acupuncture, Chinese herbs, eliminated sugar and gluten

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1414
   Posted 12/2/2014 12:44 PM (GMT -7)   
same here... never had a positive bart nor babs test. But treated Babs first for 5 months, then went after Bart for 3 months, then stopped with elevated AST/ALT enzymes. Then went back to babs for another 1 year plus. After thinking we had a mepron resistant strain of Babs we went the herbal route with little success.

Last fall of 2013, we decided to take on more swipe at Bart, which my LLMD said it may be the reason or holding back my babs treatment. The Rifampin, Plaquenil and Mino combo hit Bart hard and herxed severely for two months, but then saw good improvements from 50% up to 80-85%. Since then I've plateaued, and just started Levaquin.

Moral to the story is symptoms overlap so much you need to rotate treatment occasionally to see what disease is in the forefront, regardless of test results. Brian Rasner writes "just because a treatment protocol doesn't work initially, doesn't mean it won't work in the future when the disease is more active."

Utahgal
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Date Joined Sep 2014
Total Posts : 1242
   Posted 12/2/2014 1:38 PM (GMT -7)   
Tickbite,

What was your 2 month herx like? Can you describe it? Were you functional at all, or were you mostly housebound? Did you just wake up one morning feeling better? What doses were your meds?

My LLMD just added rifampin to my 200 mg mino. I'm starting at 150 mg rifampin then boost up to 300 then boost up to 450. I will have to ask about plaquenil.

My LLMD doesn't think I have Bart. She thinks I have ehrlichia. But she said rifampin was good for Neurolyme, which is what I have.......panic attacks, weakness, brain fog, insomnia, fatigue...
43 yrs old, symptoms for 5 yrs.
(Anxiety/panic, weakness, fatigue, cognitive dysfunction, insomnia, hair loss)
Recent IGenex test: 8/14
IGM: 18+, 23-25 IND, 31+, 39 IND, 41+, 83-93 IND
IGG: 31 IND, 39 IND, 41++
Treatment: 10/1/14: 200 mgs minocycline, 2 tablets malarone
10/24: 200 doxy, 1000 flagyl

Utahgal
Veteran Member


Date Joined Sep 2014
Total Posts : 1242
   Posted 12/2/2014 1:41 PM (GMT -7)   
Ccc mama

How much better do you feel? Did the IV make a big difference?

I've been on orals for 2 months with no improvement. I just started rifampin today, so hopefully it helps.
43 yrs old, symptoms for 5 yrs.
(Anxiety/panic, weakness, fatigue, cognitive dysfunction, insomnia, hair loss)
Recent IGenex test: 8/14
IGM: 18+, 23-25 IND, 31+, 39 IND, 41+, 83-93 IND
IGG: 31 IND, 39 IND, 41++
Treatment: 10/1/14: 200 mgs minocycline, 2 tablets malarone
10/24: 200 doxy, 1000 flagyl

cccmama3000
Regular Member


Date Joined Jul 2014
Total Posts : 256
   Posted 12/2/2014 1:54 PM (GMT -7)   
Utahgal, I believe the IV made a big difference. My brain fog is gone, my panic/anxiety is gone, twitching is at a minimum. I think I felt the worst when I was on the Cyst Buster. My LMD will be putting me on it again in a few weeks.

I used to think I was not that bad when it came to lyme. I thought I could live with the symptoms, because I was so scared of going on abx and treatment (especially the IV) but now that I am better and look back I think holy cow, I felt pretty crappy most days. Now I have energy, I wake up early and go to bed around 10:30 (that was nearly impossible before) I used to have to take naps and was always tired. I had the worst panic/anxiety ever. I couldn't even listen to people telling me a sad story with out acting like it was happening to me. my body would be achey almost daily. I would say I am about 95% better, I have some lingering twitches every so often, I get some tingling on my face and for the first time yesterday I had some aches in my arms and some in my fingers today (though that could be because I ate a bunch of gluten this past weekend and some sugar). But the worst symptom for me is pretty much gone - panic/anxiety....which is all I ever wanted!

I just pray that after the IV is removed I still keep it up. I am a bit fearful that some of my symptoms come back when they remove the PICC line. But I need to just focus on today, and today is pretty great!
2003 Found 2 ticks on me, never got a bulls eye rash
symptoms: anxiety, bone pain, joint pain, brain fog, twitching, numbness, tingling
6/2014 - diagnosed with Lyme and Babesia co-infection
08/14/14 started ABX DOXY, 9/3/14 PICC Line
acupuncture, Chinese herbs, eliminated sugar and gluten

Utahgal
Veteran Member


Date Joined Sep 2014
Total Posts : 1242
   Posted 12/2/2014 2:01 PM (GMT -7)   
Yay ccc mama! You are doing GREAT! That is so wonderful! I'm going to track your progress, so please keep posting!

Some of our symptoms are the same. My symptoms in order of worst being first:

Anxiety/panic
Arm/leg weakness
Brain fog, can't think, poor memory
Fatigue/ low motivation
Insomnia
Achiness
Hair loss

I pretty much feel like crap! Lol.

Did the orals help you at all? How much better were you after a year on orals? Why did you wait so long to do the PICC?
43 yrs old, symptoms for 5 yrs.
(Anxiety/panic, weakness, fatigue, cognitive dysfunction, insomnia, hair loss)
Recent IGenex test: 8/14
IGM: 18+, 23-25 IND, 31+, 39 IND, 41+, 83-93 IND
IGG: 31 IND, 39 IND, 41++
Treatment: 10/1/14: 200 mgs minocycline, 2 tablets malarone
10/24: 200 doxy, 1000 flagyl

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1414
   Posted 12/2/2014 2:10 PM (GMT -7)   
My Herx symptoms were worse than normal fatigue, head pressure, brain fog, anxiety, neuropathy, weak/heavy arm and leg muscles, and sleep disturbances. The improvements were all gradual. Never had any ABX bring immediate relief.

I am pretty much back working full-time since Sept 2012. I was on a four day work week for first three years on abx.

Dosages were:

Rifampin: (1) 300mg tablet 2x/day
Minocycline: (1) 100mg capsule 2x/day
Plaquenil: (1) 200mg tablet 2x/day

Post Edited (tickbite666) : 12/2/2014 2:18:35 PM (GMT-7)


Utahgal
Veteran Member


Date Joined Sep 2014
Total Posts : 1242
   Posted 12/2/2014 2:18 PM (GMT -7)   
Wow! That is a bad herx, Tickbite! How were you able to function for 2 months feeling that badly?

600 mg rifampin sounds like a lot. Is that the usual dose people take? My LLMD started me at 150 and I will work up to 450.
43 yrs old, symptoms for 5 yrs.
(Anxiety/panic, weakness, fatigue, cognitive dysfunction, insomnia, hair loss)
Recent IGenex test: 8/14
IGM: 18+, 23-25 IND, 31+, 39 IND, 41+, 83-93 IND
IGG: 31 IND, 39 IND, 41++
Treatment: 10/1/14: 200 mgs minocycline, 2 tablets malarone
10/24: 200 doxy, 1000 flagyl

cccmama3000
Regular Member


Date Joined Jul 2014
Total Posts : 256
   Posted 12/2/2014 2:19 PM (GMT -7)   
Orals helped, I started Doxy in August and my anxiety greatly diminished within 2 weeks. I was pretty lucky. Then I started the PICC line in September. So I have only been on LLMD abx treatment for about 4 months. Not sure how much longer I have left? But I was kind of preparing my body for abx treatment even before. I eliminated sugar and gluten, then I did a week detox in late June. I really think that helped my immune system and prepare my body for treatment. I also have been doing acupuncture since February of this year. I had started doing it because of my anxiety, not knowing I had Lyme at the time.
2003 Found 2 ticks on me, never got a bulls eye rash
symptoms: anxiety, bone pain, joint pain, brain fog, twitching, numbness, tingling
6/2014 - diagnosed with Lyme and Babesia co-infection
08/14/14 started ABX DOXY, 9/3/14 PICC Line
acupuncture, Chinese herbs, eliminated sugar and gluten

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1414
   Posted 12/2/2014 2:29 PM (GMT -7)   
At that point I was already 50% back to normal, with all joint pain and stiffness resolved, and greatly improved gut issues. So the neuro herx was more like a temporary setback and confirmed we were hitting bart hard.

600 mg of Rifampin is pretty standard dose for those who tolerate it OK. I think in Dr S's book Lyme Disease Solutions he recommend this dose, but to start out at 1/2 dose for a week or two first to see how you react. My first time on Rif (at same dosage) it was paired with Zith and Doxy, and the reaction was not as severe.

hang in there

berean
Regular Member


Date Joined Aug 2014
Total Posts : 66
   Posted 12/2/2014 2:47 PM (GMT -7)   
How did you know you were herxing and not just getting worse? That's what I worry about with herxing. The only time I ever [think I] herxed was following an evening in a hot springs after a day of skiing and, at the time, I had no idea what a herx was and lyme wasn't even on my register.....but I spent the next day at the ER being told I had dehydration (even though my labs showed no dehydration) and heat stroke and the next 2 months at work wondering if I was going to be fired since I didn't feel like I could put a coherent thought together. I thought I was walking in a cloud. And, who knows, maybe it was heat stroke?

My LLMD wants to start azith/rifampin/plquenil for bart in 2 weeks when i go back. I'm a little leary of the triple regimen and the length of therapy since our bodies are really not meant to be on antibiotics for that long.

I'm thinking about forgoing abx and trying Buhner's bart protocol first. Thoughts?!

Also, my LLMD recommended nystatin for antifungal coverage, but I had a lyme-friend tell me that nystatin can prolong/cause leaky gut. Anyone found that to be true? Anyone prefer fluconazole over nystatin or have thoughts one way or the other?

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1414
   Posted 12/3/2014 5:16 AM (GMT -7)   
Berean,

Initially it is difficult to tell the difference between between a herx, periodic symptom flare, or worsening of the infection(s). A herx is just a sudden release of toxins resulting from the ABX killing the bacteria. This does occur naturally as the bacteria goes thru its normal life cycle, but is more gradual. I have been in treatment now for close to 5 years, and have experienced lots of improvements, setbacks, and adverse reactions to new treatment protocols. Sometimes you just don't know what is working or if you are just getting worse. The brain fog is the worse, especially trying to hold on to a job, but it will get better.


If you can tolerate the ABX start the azith/rifampin/plquenil combo, just add only one new item per week and see how you react. The triple regimen is appropriate for the level of infection(s) we have. After two months or so try adding in Sida Acuta, or the CSA blend from woodland essence, just start slowly with a few drops per day and increase to 1/4 tsp 3x/day. Cat's Claw and Japanese Knotweed, and Cordyceps are also worth consideration.

Nystatin stays localized in the gut, while Diflucan is stronger and gets into the blood system to treat systemic candida overgrowth. I have been using Nystatin pretty much continuously as a preventive measure. I do take a break from ABX every so often and take only Diflucan for 30 days to help clean my system. Some say Diflucan also hits Lyme and acts as a cyst buster. Also a candida infection has similar symptoms to Lyme and co's (especially brain fog) so it's tough to really know the cause. Candida tests are also poor indicators, but I do test often anyway.

Hope this helps and keep us posted on your progress.

Post Edited (tickbite666) : 12/3/2014 5:19:47 AM (GMT-7)


tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1414
   Posted 12/3/2014 6:25 AM (GMT -7)   
Phan,

Thanks for the encouragement.

Utahgal
Veteran Member


Date Joined Sep 2014
Total Posts : 1242
   Posted 12/3/2014 6:43 AM (GMT -7)   
Tickbite

You always give such great info! Thank you!!
43 yrs old, symptoms for 5 yrs.
(Anxiety/panic, weakness, fatigue, cognitive dysfunction, insomnia, hair loss)
Recent IGenex test: 8/14
IGM: 18+, 23-25 IND, 31+, 39 IND, 41+, 83-93 IND
IGG: 31 IND, 39 IND, 41++
Treatment: 10/1/14: 200 mgs minocycline, 2 tablets malarone
10/24: 200 doxy, 1000 flagyl

chloe24
Regular Member


Date Joined Apr 2014
Total Posts : 236
   Posted 12/3/2014 11:01 AM (GMT -7)   
Tickbite, you know levaquin
is a black box antibiotic, right?

Xelaetaks, once I started herbs for bartenolla
my feet started hurting and buzzing
Calves hurt
more air hunger
Bad attitude and feeling pitiful
I'm saying my symptoms were not
bad,
Then I got more streaks that sometimes
bleed.
Bartenolla is very difficult
=]chloe

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6201
   Posted 12/3/2014 11:43 AM (GMT -7)   
berean—

Want to echo tickbite's comments on the antifungals. If you can stay away from the systemic anti-fungals (Diflucan, Keotoconazole) please do. They are very hard on your liver. If you do go on them, you need to have your liver enzymes checked and treat with milk thistle seed and/or burdock root if they are elevated). If you don't seem to have a systemic yeast or fungal issue and are just starting out w/ abx, a local GI anti fungal should be sufficient.

But you can take Nystatin long term without much impact. I have never read that they cause/contribute to leaky gut—just the opposite. Leaky gut is caused by damage done to the mucosal lining that allows toxins from the foods you're digesting to leak through the intestinal wall and into your body and blood stream (causing your immune system to identify the toxins as "foreign" and that's how you develop food sensitivities to what you're eating). Yeast and fungal overgrowth are a main cause of leaky gut—the yeast develops roots that burrow into the lining and eventually pokes holes through it. So, Nystatin is a very common treatment for leaky gut. The BEST form of Nystatin is the pure powder form (1,000,000 units—not the weak stuff)—without all the fillers included (some which includes sugar, if you can believe that). The powder form is added to water that you can swish around in your mouth, coating your mouth, throat, and upper GI when you swallow it… VERY effective. I had little reaction to expensive Nystatin capsules until I switched to the pure powder. Overnight results.

Also echo chloe24's mention of levaquin—everyone in my family is allergic to it, thankfully. For many people it is a very dangerous abx…

-p
Chronic late-stage lyme—likely infected in 2000; Clinically dx 3/2014 w/ Babesia, tested positive for Bartonella, CDC-positive for Borellia. Multiple viruses and GI/immune treated first; started AL-Complex in May; started A-Bart and A-Bab in July; have IV port installed and started on Rosephin.
Detox: Pinella, Burbur, Parsley, Milk thistle seed, Burdock root tinctures; japanese knotwee

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1414
   Posted 12/3/2014 12:03 PM (GMT -7)   
Chloe,

Yes, I am aware of all the warnings on Levaquin and other "flox" family Rx. Tendon damage seems to only be the tip of the iceberg, with serious neuropathy and DNA damage possible.

It's the only class of Rx I haven't yet tried, so what the hell... maybe a flox side effect may more easily qualify me for SSDI than Lyme and Co's would allow. So far so good since starting on November 19.

Thanks for the input

berean
Regular Member


Date Joined Aug 2014
Total Posts : 66
   Posted 12/3/2014 7:47 PM (GMT -7)   
Thx so much for your feedback!
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