posted
What do you do if a herx results in circulatory collapse, with feeling of impending expiry?
Allicin and Curcumin did that to me.
For all I know I am allergic (but I've taken/eated both before without this).
It's like something not diagnosed is getting killed off, in HUGE amounts, and its releasing so many endotoxins that there is vasodilation, capillary leakage, and who knows what else.
I can only be brought back from a seizure or death with about four benzo pills.
Maybe garlic and curcumin just aren't for me... but whatever they are doing/hitting, I feel like it is out of reach; just too far to even deal with because of the (theoretical) die-off reaction.
When it gets that bad, but you need to keep going, what about a medrol dose pack?
I'm aware of what the feeling is on steroids, but given the information out there about the immune evasion, the various mechanism Dr. M describes by which immune system doesn't get to borrelia, intacellular (totally out of immune system's reach), various morphological forms outside immune capabilities...
...I mean, with all that, really how much WORSE is it with immune suppression for a week with steroids, ESPECIALLY when the bacteria is slow-growing?
Posts: 200 | From Ohio | Registered: Apr 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you've been diagnosed with "circulatory collapse" you likely have a doctor who has given you instructions.
Were steroids part of those instructions?
Are you taking any steroid now, or are you just pondering that?
Might you be describing what it feels like rather than the actual diagnostic term?
Steroids can cause so much damage. There are other ways to help ease a herx. So many other ways. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- About the herbs, did you start with just one capsule a day (of just either the Allicin or the Curcumin)?
If not, it's best to back up. Stop all herbs, eat excellent food and rest. Water. Maybe some dandelion tea, though.
Other liver support is vital with allicin.
As for taking four benzos, that can boomerang, so be careful if you feel agitation to really rest. Take good care of yourself and then reassess.
Do you have a LLMD? Do you have a liver / herx protocol and also adrenal support? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You ask basically, what could be so bad about taking steroids for a week? "how much WORSE is it with immune suppression for a week?"
It could prove the worst mistake of your life and have long lasting damaging results. It has for many others, myself included (before I knew I had lyme). And one Medrol pack is not about to fix everything. Quite the opposite.
And steroids can hang around in the body for around six months.
In another thread you post today, you are concerned that you might have porphyria. Steroids are absolutely dangerous for anyone with any of the porphyrias. Very much so.
posted
Do I have an LLMD? Yes. Though non-treatment issues will have to wait till my next appointment with him. He is a bit "hands-off" for anything that crosses back into the non-TBD arena (and he is very open about this). Don't know all the reasons.
The feeling is I was standing around and all of a sudden felt something wasn't right, then like clockwork I got a "weightless" feeling in both sides of upper abdomen (kidneys, adrenals?), then heart began to race, as did feelings of panic.
I knew if I didn't take benzos, my HR would go up into the 200s, I'd faint (sadly, my POTS is getting WORSE with treatment), have a seizure, or just flat out die. It was a feeling that the current physiology was not going to support life for much longer.
I have two medrol packs I never used from previous sinus infections. Don't worry, Keebler, I wouldn't use them unless, well-you know--it felt like it was all that was left.
I could handle doxy herxes (barely). I am having a bit tougher time with cephalosporin herxes. But the garlic and curcumin herx took me to the point of benzoing-up, and if not better going to the ER.
I really really wanted/want to make herbs work, because a friend who is a doctor explained to me that long-term antibiotics are hard on the body.
I don't know if my ABX limit will come sooner or later (I was already feeling that way).
And this explains my great, passionate interest in Cat's Claw. Some older ER physician on his old-school website was talking about CNS lyme emergencies in the ER, and he claimed someone took cat's claw and two days later went from paralyzed to back to walking.
I have this fascination with natural remedies. But just when you think something is perfect, you then read that it is an acetylcholinesterase inhibitor (berberine, this time), or worse, that berberine blocks potassium channels in the heart! This puts it into the category of macrolide antibiotics, or triazole antifungals for arrhythmogenic risk, especially in patients with any one of a number of other risk factors (such as polypharmacy with QT-prolonging drugs, etc)
Posts: 200 | From Ohio | Registered: Apr 2016
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Sounds more like a panic attack. And in any event that's exactly what they would have done for you at the ER.
There are always stories about people going from paralyzed to back to walking with a thousand different substances. I was just reading some guy saying he's recovering with vodka and DMSO.
I didn't think this six months ago but now I think mixing too many herbs with too many abx is a recipe for disaster -- or actually feeling miserable in a new way you had never considered before. The reactions pass but in truth you'll never know exactly what happened.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Tumeric an break up biofilm and maybe have effect on babs ...iv curcumin gave me some of same feelings ..hands got like raisens but inflammation was way down.i got the idea from this vasculitis posted by bea sebert
February 10, 2010 (MMD Newswire)
-- The daughter of a two Romanian physicians, father a cardiologist and mother a neonatologist, remembers being bitten by something in 2001 when Ana Ciobanu was only 6 years old. She developed headaches for the first time in her young life, which continued without help from standard interventions.
In 2008, she was scratched by a cat and developed some skin lesions but because she had no other symptoms a year went by before she was diagnosed with Bartonella henselae, the cat-scratch disease.
In April 2009, she was scratched by and owl and became so ill she was completely bed-ridden - it was then that she was also diagnosed with Rickettssia conori, Babesia and then Lyme.
She began to walk again after one month of IV antibiotics but progress was slow. She began receiving hyperbaric oxygen treatments and experienced tremendous improvements and resolution of her headaches after just 20 treatments.
She was being treated at the Hyperbaric and Diving Medicine Centre Constantza, Romania but she developed such severe Lyme vasculitis (see attached article) that she went into full circulatory collapse (no blood pressure).
It was then that Dr. Ciobanu contacted Lyme and hyperbaric oxygen experts in the USA for help. Dr. Stoller, Medical Director of the San Francisco Institute for Hyperbaric Medicine as well as the Hyperbaric Medical Center of New Mexico, immediately recommended that Ana be placed on therapeutic doses of Curcumin (the healing component in the spice turmeric).
Both Dr. Stoller and his nurse in San Francisco, Gayle Link, RN (an expert in treating Lyme in her own right) recommended that Ana resume hyperbaric oxygen at a lower pressure than she had been getting treated and last week a trial treatment went well. Ana will resume her treatments on February 12th.
The Curcumin rapidly brought down the high levels of inflammatory biomarkers (cytokines) and Ana made a full recovery
The San Francisco Institute for Hyperbaric Medicine is the only hyperbaric treatment facility in San Francisco treating Lyme disease, just as The Hyperbaric Medical Center of New Mexico is the only facility treating Lyme in New Mexico.
Lyme disease is an international problem and calls for international cooperation.
Gayle Link RN, Director of Nursing San Francisco Institute for Hyperbaric Medicine www.sfhbo.com tel 415-513-5813 cell 415-269-1498 185 Berry Street Suite 4801 San Francisco, California 94107
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
If you have been diagnosed with circulatory collapse during treatment I would urge your doctor to admit you and go through treatment supervised.
Posts: 70 | From New Jersey | Registered: Aug 2013
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