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Lyme / mold / possible toxic exposure - which to start with?

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Posted 9/16/2018 8:33 AM (GMT 0)
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( 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. Should I detox from mold, etc, fully first? Or is it ok to do antibiotics at the same time as detox in severe cases? )
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(... 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 Horowitz 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.

Post Edited (OzLyme) : 9/16/2018 2:45:46 AM (GMT-6)

Posted 9/16/2018 5:56 PM (GMT 0)
Yes I would definitely try to make a anti-heavy metal and anti-mold strategy at your point.

I had massive mold problems and questionable well water, and until I addressed this, I had weird interactions (one with minocycline, others with NAC, etc). Also the mold/yeast amplified my lyme problems 2x-3x.
This is what I did:
1. Bought a cheap HEPA fanfilter on amazon. There's a $35 one that is cheaper then the filters. I have it next to my head when I am sleeping
2. Bought a $25 cheap RO filter from amazon called Geek Pure. RO filters won't work with hot water or chlordinated water, or won't last very long. Get a $15 TDS meter and make sure your TDS level is going down. If your water is bad (TDS 200-300), this filter will only last 300 gallons. But if you only need 2-4 gallons a day, that should be 6 months. If your water is already good (TDS 70-100), it should last longer. RO water should be TDS 30 or under
3. There's a $75 water distiller on Amazon but it costs $.35/gallon in electricity jack up your power bill to $45month (USD)
4. 1/2 cup Borax and 1 cup Epsom Salt in the washing machine every load. Throw away any bad socks, towells, bedsheets. Get a new pillow
5. Citric acid at the dollar tree (L.A. Awesome) clean all surfaces. Borax in all the vents. Borax in your shower drain
6. Change all the filters on every vent/machine you can
7. This one was strange: every shower, wash your feet with soap and rinse them 3x times. For whatever reason, this was a 90% improvement alone. New shoes. Put Borax powder in the shoes. New socks.

7. Gut flora: Find a Pro-biotic with the highest "culture" number. The one i can afford is 25 billion per pill. These pills expire. There's one that is very expensive that is 200-300 billion. I vaguely remember Dr. Horowitz saying "you need the 200 billion one", that would be 7.5x of my 25 billion ones.
8. Taking Fiber with Pro-biotics: this absolutely DOUBLES or even TRIPPLES the strength of Pro-biotics
9. Anti-parasite Anti-Mold protocol from your doctor: Your doctor is should already be on the anti-mold protocol, but one thing they forget is anti-parasite.

For whatever reason, it is commonly known that "the human body has 7 or more parasiets at a time" but no doctor asks or treats them. I absolutely think there is a huge link between parasites, and all major diseases including cancer and what you have.

Get your doctor to give you Ivermectin, Alinia, etc.
My old doctor would tell me whatever I wanted to hear, and then ignore me (my prescriptions would be wrong). So the next time I saw him he said I didn't have parasites, I asked him to put that in writing. If he can tell me something then he can put it in writing or it isn't true. That was basically the last time we spoke, as he was unable to do this simple request for me. Since my new doctor has addressed the parasites (and parts of the above were part of her anti-mold protocol) I have been feeling better and now some of the older medications that gave me a huge reaction, no longer do. And the biggest factor was Ivermectin with mold (and other things) except the washing-your-feet (that could just be specific to me)

Oh also Epsom Salt showers or baths with the method of action is the Sulfure in Magnesium Sulfate. There's a shampoo I think head&shoulders and others that contain Aluminum Sulfate that people take, but it is toxic ( I think it causes breast cancer and should be removed from the market), but Magnesium Sulfate -- which is very cheap I buy $14/50lb bag at the feed store has no side effects. I use it on all my laundry (very very nice fabric softener) and in every shower. It was an incredible discovery I think I read it here or somewhere else. The sulfate should kill the mold, if you can get a sprayer spray outside and inside your house epsom salt. Borax is Boron and something else, that breaks down to hydrogen peroxide with water. I think Hydrogen Peroxide is bad for the human skin and internally (and I see people recommending it internally I shake my head, used on the skin it will etch your skin layer away), but OK for outside spraying or laundry.
Posted 9/16/2018 6:03 PM (GMT 0)
also do not consume any sugar or starch, or milk whatsoever. There's the Keto Diet, but you're not trying to lose weight, just cut off the food supply to mold/parasite. I found after 30 days of no-sugar no-starch, then fasting, first for 24 hours, then for 3 days like the Bible says, and then I was able to go 8+ days before things got scary. I had incredible energy but not eating. I would take a tablespoon of peanut butter or hard boiled egg if my stomach got angry to get to the 8+ day level. I have no idea if this is a good idea for your or not given your different medical conditions. But sugar craves are a sign of mold infection, and I had MASSIVE sugar craves that I no longer have -- like DROP everything and buy $40 worth of candy and I had no idea why. That's all gone now. When its 100f I still buy ice cream sandwiches, which have sugar, so I am not 100% strict. I cheat all the time now I have it manageable.
Now, anything with carbs/sugar make me sick which is common with people on the Keto diet after a few months.
Posted 9/17/2018 8:33 PM (GMT 0)

OzLyme said...
=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
( 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. 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 Horowitz 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.

Welcome to our community,OzLyme!

I think - since you know you had mold exposure with subsequent symptoms - it might be best to try and get that out of your system. It may be too much to tolerate doing both lyme and mold right away.
Posted 9/17/2018 8:39 PM (GMT 0)
I’m sorry you are going through this.

What is the reaction your body has to doxy?
I can imagine there are not many ll drs there.

I have had so many neuro symptoms, I thought it was over. It’s very frustrating not knowing exactly what’s going on, but Lyme and coinfections are very complex to treat and must be looked at from many different angles at once. Detoxing, immune system, parasites, mold, coinfections, etc etc.

Keep going!!

I had 5 good days in a row this week, actually feeling joy again.
As the layers of the onion come off there are many cycles of ups and down.

If I listened to the neigh sayers I would have killed myself, but I pressed on.

Learn as much as you can about neuroborreliosis, keep asking questions, and formulate a winning plan.

Be well
Posted 9/17/2018 10:06 PM (GMT 0)
Thank you so much Oregonhay your tips are great. I have already implemented a few (filter etc) but the others were all new and super helpful

Mind body spirit - thank you for the support! I am fighting 100% to try and stay positive, but i lose it quite easily, mostly when my sleep is totally disturbed, and it has been... for most of the year. Need to just stay in the fight i guess

Girlie - thanks! Yes I was already aware that "in theory" i should "do mold first" and detox... but since i didnt know that a few months ago when i saw the CPn doc (who knew nothing of mold)... ive already started over a month of roxy/adding in some doxy. Im afraid of stopping now, and just making the bugs resistant. But I also dont know how much of my symptoms, which are severe (twitches, muscle spasms, visual symptoms, jumbled thoughts, balance, etc...) are from toxins and how much from 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. Thinking babesia, but also could be toxic stuff.

CBD helps anxiety, but didn't help sleep, may have even disturbed it / caused a die off. Usually feel better after it though.
Melatonin works, but using it for a few months at high doses seemed to exarcebate my weird blood vessel symptoms / growing new little veins. Might have been the lllt / infra red light, too. Or just a mold / TBD symptom.
Posted 9/18/2018 1:44 AM (GMT 0)
Melatonin gives me nightmares, sweats, and makes me groggy. Do you do yoga or get long walks in? Good for sleep.

Mold- I regularly clean my house with vinegar, baking soda and tea tree essential oils- all proven mold fighters. Wipe my walls, closets etc......But really if you have mold in your house you should move or burn it down.

I make a bentonite clay shake with a shot of Vinnegar first thing in the morning.
alkalyzing the body is one of the best ways to fight mold- a tsp of baking soda in a cup of water 1-3 x per day will raise the ph of your body in a short time.

Raw Cilantro pesto, clay and chlorella for heavy metals
Posted 9/18/2018 2:35 AM (GMT 0)
I agree about burning moldy houses!

My main exposure was years ago. However I still have the toxins inside me no doubt, maybe even some mold colonising sinuses, since ive had eustach tube disfunction for years now.

I was living overseas, and came back once i got obviously neurologically sick, about 9 months ago

My options for living were a coastal place, which seemed mold free. However there was some green gunk in the A/C i saw recently, and I know in the past theyd had some water leaks. Maybe nothing, but the green slime coating the AC was enough to scare me away

Then there was a place which is inland, and at about 3000ft. It has some pollution problems I think, though I was running a HEPA filter. I went there about a week ago and started seeing weird visual patterns when i closed my eyes. I wondered if the pressure changes had an effect on my brain / eyes, or the slightly lower O2 concentration was making the bugs grow.

So now I am currently staying in an AirBnb in a smaller village with what seems like very clean air, and basically at sea level. Its hot ish here and im amongst the trees, so i need to be careful of ticks, though I think they're rare in Australia.

Post Edited (OzLyme) : 9/17/2018 8:40:22 PM (GMT-6)

Posted 9/18/2018 2:38 AM (GMT 0)
Just re: the baking soda - isnt that kind of the opposite to taking in lemon water, which I thought was a good idea for lyme sufferers? Ive been doing lemon water along with green tea and seem to have a good effect... and i was reading in a LLMDs book that even though lemon water is acidic, it had the end effect of alkalising the actual body more. Agh im confused now!

Thx for the suggestions!
Posted 9/18/2018 2:56 AM (GMT 0)

OzLyme said...
Just re: the baking soda - isnt that kind of the opposite to taking in lemon water, which I thought was a good idea for lyme sufferers? Ive been doing lemon water along with green tea and seem to have a good effect... and i was reading in a LLMDs book that even though lemon water is acidic, it had the end effect of alkalising the actual body more. Agh im confused now!

Thx for the suggestions!

Baking soda alkalizes the body.

And lemon juice although acidic - once consumed - it alkalizes our system.
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