canefan17
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posted
This is what I have right now...
BARTONELLA SYMPTOMS
BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients with Bartonella. Note: Approximately 50 percent of patients who develop Encephalopathy can be affected by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches, Cognitive Dysfunction, and CNS Lesions may be evident.
BARTONELLA-LIKE ORGANISMS by Joseph Burrascano
Indicators of BLO infection include symptoms involving the central nervous system that are out of proportion to the other systemic symptoms of chronic Lyme. There seems to be an increased irritability to the CNS, with agitation, anxiety, insomnia, and even seizures, plus symptoms of encephalitis, such as cognitive deficits and confusion. Other key symptoms may include gastritis, lower abdominal pain (mesenteric adenitis), sore soles, especially in the AM, tender subcutaneous nodules along the extremities, and red rashes.
Any advice for me and my dad? He's with me and asked that I post this to you all.
And it wasn't until today that finally realized this is Bartonella. My brain feels swollen and and nervous system is fried. I've slept 4 hours maybe in last 3 days.
If these symptoms just came on in the last few days, do you think you may have been infected by a new tick bite?
What are the ER doctors saying? Do you have an LLMD that you can call?
I know you posted the other day about the seizure after taking the sage oil. Were you having any of these symptoms before you took the oil?
Posts: 227 | From Northeast | Registered: Mar 2010
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canefan17
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I was not having this before the sage oil. But I believe the sage oil has stirred up Bartonella big time.
I have Bartonella and had it under control until this.
ER Docs were no help. Told me it's not an emergency.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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canefan17
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posted
Will Benadryl help bring my system back down so I can sleep?
Wired like you wouldn't believe. And it carries over into the next day and I literally never sleep.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
My suggestions would be to try something like SAM-e or l-theanine. I would also take lots of antioxidants like vitamin c and CoQ10 and pycnogenol (pine bark extract).
The reality is that if you do have encephalopathy or encephalitis from bartonella it is not a quick fix.
Can't remember if you have been on meds or only alternative treatments. The meds that worked to get rid of bart or BLO or mycoplasma or whatever mystery pathogen hubby had were very high dose rifampin plus factive.
But it took a total of about 2 1/2 years -- could have gone quicker if we had known more about what was going on.
In my opinion a trial with either Levaquin (less potent than Factive) and/or very low dose Rifampin would quickly prove to you if it is indeed bart or something like that you are dealing with. In my opinion the treatment is more likely to succeed if you go low and slow to minimize any negative reactions to the meds.
Bea Seibert
P.S. If you do have encephalitis then something like IV Rocephin might possibly help � but for hubby the IV Rocephin did not work the first time because he had not treated bart first.
For sleep you probably need to increase GABA -- hubby uses 5 droppers of passionflower extract with 1 dropper of hops and 1 dropper of kava. He also takes melatonin and 5HTP. But the 5HTP can be a problem if you have brain inflammation -- per Buhner resveratrol (Japanese knotweed source) can block the conversion of serotonin and precursors to quinolinic acid which is a brain neurotoxin.
You most likely are deficient in serotonin, but SSRI's could also backfire the same as the natural supplement 5HTP.
Yes, it gets complicated and it took us years to put the pieces together. But hubby no longer has multiple daily seizure-like spells and sleeps pretty soundly most nights. He is off seizure meds and gradually decreasing his oral ativan once again.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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karenl
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Member # 17753
posted
Canefan,
there is no proof it is bartonella? So it could also still be parasitic or anything else.
Why are you not on IV abx for some days like rocephin and then probably on doxy, ampicillin or amoxycillin oe as Bea said rifampin. If you feel so horrible and you have lost so much weight abx would be indicated. At least for protection.
You have no LLMD? Can you travel?
Posts: 1834 | From US | Registered: Oct 2008
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I'm starting IV vancomycin and oral levaquin for bartonella encephalopathy tomorrow. Symptoms are extreme cognitive impairment, twitching all over, dizziness upon standing.
My nervous system is completely fried too.
Posts: 121 | From Houston, TX | Registered: Aug 2009
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CD57
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posted
Bea -- what was high dose Rifampin?
Posts: 3528 | From US | Registered: Apr 2007
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canefan17
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posted
Went to ER again last night - hadn't slept for 3 days, really thought this was it.
FINALLY a Doc helped me (a female!! she listened)
She sedated me first and foremost. I was on the verge of shock.
Then we agreed upon Doxy + Rifampin. Dr S and Burrascano both talk about Bartonella and encephalopathy. That's EXACTLY what I've been experiencing for 5 days now. And I've never had it before, even had Bart under control, until I took high dose of a very strong sage essential oil.
Ugh what a mistake. I think it either woke UP a deep rooted Bartonella infection or drove it deep into the nervous system. Nevertheless this is awful.
I see a specialist in 3 weeks who worked under Dr K. Until then I have to take Doxy + Rfampin + sedative + Ivermectin
And if I can ever get out of the woodworks I may even coil some for Bart too (Which had been successful for me up until this acute reaction)
glm1111
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posted
Just saw this and sent you a pm...was worried about you. Glad someone listened and put you on meds.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Hubby took 900 mg Rifampin as one daily dose before supper. The new theory was to take bart meds in the evening as supposedly it multiplies overnight. In the end he took the Factive 5 days per week. Alternating Factive and Tindamax did not work. Was on the above combo for about 6 months -- this is after doing lower dose meds for many months plus herbs as well.
Canefan -- Sounds like a reasonable combo. But I would be careful of the Ivermectin at this point.
Hard to say exactly what happened but it is possible that the sage oil actually killed some parasites and that is why the bartonella became active.
Hubby has definitely had things come out of hiding this summer whenever he had a major babesia die-off. For him it was Serratia Marcescens, Rocky Mountain Spotted Fever and Human Granulocytic Anaplasma. None of these infections showed up until he did very aggressive babesia treatment.
Please be sure and update us on what your new doc says in a few weeks.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I had a bad reaction when I tried Factive and flagyl the first time. It felt like my brain swelled with so much pressure. I stopped the meds and started downing several supplements which seemed to help some. Coconut oil, whey protein for aminos, fish/flax oil, vit.C, and tons of celery because of leutolin. Eventually rotated ginkgo and vinpocetine in for blood flow. I felt my issue was neurotoxicity though
Posts: 37 | From Tampa, Fl | Registered: Feb 2011
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glm1111
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posted
cane,
After giving this some thought, I really think you probably are just neurotoxic and possibly have some liver toxicity as well. Could be causing the hallucinations.
I always try and keep things as simple as possible and look at what occurred before any reaction. The main activity was the high amount of sage oil you took.
It might just take a while to calm down. Drink plenty of water, and check out other things that can calm this down. Someone suggested Vitamin C.
I know it's good for an allergic reaction. I will do some digging as well. Hope you get some relief soon.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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canefan17
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Member # 22149
posted
Thanks for responses.
The Bart reproducing at night makes sense because that's when these major flareups occur.
There's a neurotoxic aspect to it - but this isn't just a detox issue. This is an infection attacking CNS (brain)
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
The infections probably there, but it sounds like you irritated the CNS as well. Upon studying the side effects I found factive to be the culprit for its toxic cns stimulation on me. Apparently sage oil can do the same with one of its compounds being thujone.
canefan17
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Member # 22149
posted
seibertneurolyme,
Your mailbox is full - I tried to send you this
...I'm on 900mg per day of Rifampin (with Doxy) and already the Rifampin is losing it's luster. I take the rifampin on empty stomach and then wait 1 hour and take the Doxy. Do I need to take these even closer together so Bart doesn't become resistant to Rifampin?
Does Bart become resistant that fast? I know someone who took Rifampin 1800mg per day for 6 months.
I can already tell that may be necessary for me.
Can you tell me anything else about your husband's experience with Bart/encephalitis. 2.5 years it took? What dose Rifampin?
Seems to me that Bart thrives off of immune system being suppressed. Maybe parasites treatment and/or chelation would help with Bartonella.
Possible HIV?
(sorry, just thinking outloud)
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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I know everyone is different so you may not respond the same as hubby did.
My personal opinion is that the fluroquinolones were just as important as the rifampin. Hubby started with levaquin and later switched to factive. He tried several diferent rotation schedules on the factive -- doc wanted to rotate that with tindamax.
What worked best for him was taking the factive every day for a couple of months and then 5 days a week I think for about 4 more months. I would have to dig out my notes, but in the end he took the rifampin and factive plus minocycline and just waited til later to do the tindamax. Was not really treating babesia much at the time.
Hubby recently tried rifampin again and did not do well -- think it decreased his bloodlevel of malarone too much. I would agree with the medical literature that those 2 meds defintely interact.
I don't think taking the meds closer together will help.
You also need to know that in the beginning hubby could not even take 50 mg of rifampin 3 times per week. It took him 8 months to get to the normal dose of 600 mg of rifampin. And then he had a bad herx and the doc backed off meds for several months. Every time he herxed the doc backed off meds and that added months to the total treatment.
If you are at 900 mg of rifampin then I think you need to add a 2nd or 3rd drug and hopefully 6 months or at most a year should be long enough.
But if you can't take the fluroquinolones then I am not sure what else to suggest. Maybe tindamax or flagyl possibily. Not real sure if zithromax or bactrim would help or not.
Hope you can figure something out. But I do know that after 2 or 3 days off factive hubby could tell that symptoms were coming back. So I think you will know pretty quickly if anything else helps make the rifampin work better. Hubby's primary bart symptoms were seizure-like episodes multiple times daily.
I would suggest cryptolepis, but not sure it is currently available. Last time I talked to Woodland Essence their shipment had not come in from Africa. Will be talking to them later this week about the sida acuta herb for babesia and will try to get an update on the cryptolepis status.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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canefan17
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posted
Thanks for all the info seibert - sorry your hubby had to go through all of that. A bad CNS Bart infection is a living nightmare.
I'm at the point where I just cry and almost beg to be "taken." This encephalitis junk is no joke.
My biggest regret to date is taking Sage Essential Oil. It penetrates the nervous system EASILY but in doing so it woke up a deeper Bart infection I had no idea existed.
I've heard all of the nightmare stories about fluroquinolones - how did your hubby fight that off? (tendonitis) (use magnesium?)
Also, since you recommend cryptolepis, what's your opinion of Cumanda? Did your hubby use any herbs while on Bart meds?
So far I find that most of these herbs just seem to irritate Bart and stir it up.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
Bea: Cryptolepis is available again from Woodland Essence. I just got a shipment. Haven't started it yet.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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canefan17
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posted
paulie,
Have you used it before? High doses?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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canefan: No, I've never used it before. I heard Burrascano mention it during his ILADS presentation. I was going to talk to my LLMD before starting it. -Paulie
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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