posted
=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- ( TLDR - Australian, 31 male, have CPn, likely co infections, definite mold exposure, prob other toxins. Symptoms are severe, and look like im developing Parkinsons, which can be toxin related. Have been on roxythromycin about a month, due to probs every time i start adding in doxy/mino. Penicillin given for different infection, made me feel a fair bit better. Should I detox from mold, etc, fully first? Or is it ok to do antibiotics at the same time as detox in severe cases? ) =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
(... and here is the fully story, if necessary...)
Hi everyone,
Im just going to dive right in...
I have neurological symptoms which mimic Parkinsons/Lewy Body more than anything (though im only 31) with cognitive jumbling and impairment. So, horrible nightmares and disturbed sleep, sometimes sweating, mixing up words in my head, anxiety, some heart arythmias and weirdness (though ECG normal), extreme muscle tightness, especially in neck, more recently poor balance, muscle spasms and twitches, and a tremor. Also visual symptoms such as floaters, little stars, and other weird patterns when i shut my eyes, sometimes.
A neurologist said my tremor isnt the classic Parkinsons tremor (though its gotten worse since then), a lumbar puncture to look for dementia markers was normal, as was a standard MRI, but I fear I may just be in the early stages. I first thought Parkinsons/Dementia, then learned that my symptoms were very common with mold toxicity, then also learned they were common with Lyme disease and co infections.
I tested positive to having a chronic chlamydia pneumoniae infection.
I was bitten by a tick a few times in North Carolina when I was seven, with no rash, but aside from developing OCD as a kid, no severe symptoms.
I was exposed to a moldy room for many years, but that was more than six years ago. Symptoms started around then, but didn't get memory and joint problems until i was stupidly prescribed an aromatase inhibitor for six months for excess estrogen (probs due to mold / CIRS) which started the downhill slide. But i soldiered on and was ok, despite having symptoms in retrospect, and didn't get very sick until... about a year ago I was very stressed, i lost weight and wasnt eating enough, and had been prescribed a corticosteroid nasal spray for sinus problems (which i believe makes Lyme / CPn grow).
So a perfect storm and now here I am. I studied medical science for two years before changing careers, so understand what I read and have been doing loads of research. This has been useful since living in Aus, Lyme and TBD isn't well known. However it hasn't helped my obsession and stress levels of course. But really... i have the symptoms of parkinsons/lewy body, and everyone here thinks its "all in my head".. so of course I'm worried and want to treat it.
Ive been given doxy + roxythromycin + tinidazole to pulse, by a doctor here who knows about CPn. Im taking the roxy now, and am going to try take the doxy again (had gut issues starting, so went to other one first)... but....
Ive also seen a functional medicine doctor who has done tests on many things, which seem ok, apart from some lowish testosterone. So she believes the majority of my problems are toxins - from the mould. I.e CIRS, etc. Ive been given cholestyramine and some other detox stuff, for that. Havent looked at metals or anything yet.
My question (finally) - should I be off antibiotics to detox the mold completely FIRST? Ive been listening to Dr H** who has said in such patients, "you need to get the detox pathways working before touching the bugs".
I CLEARLY have a problem with infections / TBD... however... ive read Dale Bredesen say that people with Parkinsons /Lewy body have TOXIC exposures. So Im quite keen to detox, investigate heavy metals, etc first. Its just ive been on the roxy (with periods trying to take doxy/mino) about a month now, and don't like the idea of stopping and starting ABX too much.
Thank you so much for any advice I look forward to contributing and sharing my experience with everyone. Really, all this research ive been doing can hopefully end up being useful by sharing it with others, I figure.
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I hope other people come here to give their opinions...
After reading all you wrote, for me too the first thing SCREAMING from your symptoms are toxins. Even OCD could be triggered by that - every single person that is fully toxic is EXTREMELY anxious.
Heart symptoms, mental symptoms, digestive problems, then a HOST of other problems come when you are very toxic.
While excessive antimicrobials can AND WILL make your toxic problem worse...
.... cleansing shouldn't cause as many problems as antimicrobials (in theory).
Cleansing though MOVES and STIRS the toxins, so they can be problematic too, therefore, if I were you, I would try a lot on my own (like cleaning my food, cosmetics, environment, clothes, water, air) ...
...while trying to find very knowledgeable physicians that KNOW about detox, know about how patients react, know about ORGAN SUPPORT, and know MANY alternatives of binders and detox substances - MOSTLY natural things, IF possible.
Adding drugs will not make the toxic load better, but only worse. Any drug, including aspirin, has side effects and you need to have good functioning kidneys, liver, gut, etc for taking such drugs.
I had fought lyme and many other infections - by a dozen at a time (sometimes even more) - and my body can't take a lot of antimicrobials.
I have to start with organ support, then cleaning stuff, clean diet, and other therapies to support detox, THEN - only then - I may start thinking about adding one antimicrobial.
It's more or less what you said Horowitz suggests.
As for antimicrobials, I prefer - no single doubt - homeopathic nosodes or homeopathic treatment at the base.
Then I would add some herbal or other therapy (light, electric, heat, ozone, whatever you think may help your body kill pathogens), but very slowly.
Only like that, my body can finally reach some homeostasis, and actually fight pathogens, while I can lead a more or less normal life.
If I go antimicrobial only, I soon have no life, only misery, and then I start loosing for pathogens: they win, invade my body, I get more and more symptoms, plus the allergies, inflammation, extreme fatigue, etc.
In sum: in my case, I have no choice than doing things in this order: support -> detox -> mild immuno regulators -> adding one or another antimicrobial here and then.
If I resist, I can add more antimicrobials, but if I feel I'm getting toxic, I back off.
I hope other people tell their opinions, this is just what I do for myself and my family. We're now a zero-drug family, it's been many years we do not touch a drug anymore because we found many other non-invasive ways to support our health.
We did use drugs in the past, but I find that they only help VERY SHORT TERM. Long term, they bring more disadvantages and disease.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Just another tip: detox is an art and science.
It is a complex field.
the best is to read a lot, as you are doing, but also find practitioners that have experience with it.
It will save you time and money.
On the paper, it looks easy: if you have heavy metals, take chelators, flush the metals off.
In practice, if you just concentrate on a couple of heavy metals, such as lead, mercury, or aluminum, it may take you literally months or years to start touching the problem in a meaningful way.
I speak from experience.
So finding practitioners that have already done that extensively - heavy metals, mold toxins, neurotoxins from Herxheimer reactions etc - will save you time, money and suffering.
I do hope you find people around you in Australia that can help.
A lot of info has been written here and in other forums too.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Top Cpn website, just excellent. Cream of the Crop.
posted
Just to the admins who edited my post - it perhaps doesn't make a difference, but the LLMD i mentioned isn't my doctor, he's just someone I've listened to speak on YouTube etc!
quote:Originally posted by Keebler: - Top Cpn website, just excellent. Cream of the Crop.
- Welcome Chlamydia Pneumoniae Help and Treatment. -
Thanks! Yes I found that site initially after reacting to NAC, and it has been a great help.
Posts: 38 | From NSW, Australia | Registered: Sep 2018
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posted
Thank you so much for the replies, Brussels! I will digest all your suggestions and respond properly...
Posts: 38 | From NSW, Australia | Registered: Sep 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ways to "detox" are many. Basically, it is all about good solid liver & kidney support. And avoiding certain things that can hurt the liver / kidneys (acetaminophen / ibuprofen, etc.)
Some antibiotics can be especially hard on the liver / kidneys just in terms of the chemical action but also when they trigger a die-off. Liver protection must be in place first - and, yes, functioning liver and kidneys first, too. Yet, best to address mold issues to a good degree if possible before starting antibiotics.
There are other ways to approach infection (Stephen H. Buhner books are very valuable).
Antibiotics can also make mold issues MUCH worse. So much worse. Some kinds of anti-fungal protection must be on board first. Not just probiotics but those are necessary, too.
"Detox" methods can often be to harsh, something to keep in mind as it's best to avoid stressing the liver / kidneys yet rather, give them what they need to do their job.
As for heavy metals, though, there are a few things more specific still, best to be gentle & consistent rather than like a cleaning tornado.
IMO, one must not just deal with the liver / kidney support but also deal with infection as infections are ongoing stress and toxicity to the liver / kidneys.
But, as you stated, Dr. H says " "you need to get the detox pathways working before touching the bugs".
That is true. The pathways need to have great support to get working. But that need not take a long time. Something has to also be done to dampen down infection reactions.
Some herbs can both help the liver at the same time as having some action against some infections. Stephen Buhner's books are good to see.
Some key herbs: Berberine; andrographis; Olive Leaf Extract have both some antimicrobial help as well as liver / kidney support. These can be a starting point.
Heavy metals, though, might first be addressed a little while before starting treatment for lyme or other chronic stealth infections such as Cpn.
But MOLD requires many more steps to be sure exposure is minimal. Many more. And it might be wise to first be in a clean environment before embarking on a vigorous path to treat infections. It can also help sort out if mold is a bigger problem. It can be.
Below, one expert with mold issues. She not a LLMD yet has presented mold detail at ILADS conferences.
posted
Thanks for the response! Im making my way through reading those resources now
As for the mold, im quite on board with that and know about the shoemaker protocol. Ive gotten out of exposure, and have been on cholestyramine, albeit lower doses, for about a month. Hard to tell if its helped. The main reason i doubt its the mold, is that my main mold exposure was over three years ago.
The problem is.... I HAVE already started the antibiotics, for CPn. gradually over about two months. At first i may have herxed. But now mostly I think theyve made me feel better, no major herxes or anything. Could also be the anti inflammatory effects making me feel better. However i figure if i stop them (roxy and doxy) after two months... would just lead to resistance, id think. Ive only pulsed tinidazole once.
The problem is im VERY systemically ill (twitches, muscle spasms, visual symptoms, jumbled thoughts, balance, etc...) and dont know if its the toxins or TBD.
Honestly my major problem right now is sleep. I wake multiple times a night, and if im a tiny bit too hot, ill be sweating. Not a "drenching" sweat, but its still there. Along with very vivid dreams / nightmares. Every night, for six+ months now. Gradually gotten worse.
Its this that makes me think bart/babesia/something similar in Australia... are involved. So i want to treat them aggressively, but also dont want to make things worse with toxins etc. But... if i go off antibiotics now, i may make the bugs grow again and do more CNS damage! Ah its so hard to know.
I really need to find a dr who covers mold and lyme. Ill work on that, might need to skype someone in the US (I know one or two I might try)
So right now im out of exposure, on cholestyramine, and roxy/doxy with tinidazole to pulse when needed. Im waiting to pulse it, for the detox reasons we've talked about.
My current thinking is that I probably need to be tested for heavy metals,
Then I need something like nystatin to control for yeast etc, and probably do a trial of antiparasitics, all while continuing to be out of exposure. Will try a herbal antiparasitic or two first, then maybe another drug will be necessary
Posts: 38 | From NSW, Australia | Registered: Sep 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Far better than nystanin, IMO, for candida / yeast management:
Antibiotics will not address Babesia, just so that's clear.
Be sure you are on good liver / kidney support even if you already started on antibiotics. At all times, liver & kidney support should be on board to help mitigate some of the effects from chemical Rx. Just take a couple hours away from Rx.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Antibiotics will not address Babesia, just so that's clear.
Be sure you are on good liver / kidney support even if you already started on antibiotics. At all times, liver & kidney support should be on board to help mitigate some of the effects from chemical Rx. Just take a couple hours away from Rx.
Good luck. -
Thank you Keebler!
Id read about OLE but thought it was a biofilm buster and would aggravate the bugs, so I was waiting to add that in. But if its good for candida etc, I may need to add it sooner!
I hear you on the liver/kidneys. My liver enzymes were slightly elevated when i pulsed tinidazole, and when i started doxy a while back, but then they went down. The problem is CPn can infect the liver, so it could have been that too.
But i am watching it. Ive added in milk thistle and dandelion for liver/kidneys, but am always looking to help out these organs so open to any new suggestions
Posts: 38 | From NSW, Australia | Registered: Sep 2018
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posted
I was thinking of adding in cryptolepis or artemisia at some point and seeing if it had an effect, if theyre still recommended by people for Babesia...
Posts: 38 | From NSW, Australia | Registered: Sep 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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