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glm1111
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Okay, I will start this thread by wishing everybody a positive, healing journey on the path to eradicating chronic Lyme Disease and back to good health.
Gael
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lax mom
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surprise
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I have a salt/C question, if anyone would care to share.
I stopped Samento/Banderol max dose 2x a day, holding, to go to Salt/C instead for Lyme/ parasites- finishing off Levaquin to nail Bart down to goodbye-
Anyway, I am holding only 3.00 gram max salt a day - appropriate vit. C- about 3 weeks in.
And feel like Lyme is really flaring- or is it a herx? I can't tell. Sorry, gross, but I have seen 'slime' from salt/C like I did while on Tindamax (did a lot of Tindy)
Flare or herx? Can't tell. Going to add Col. Silver Spray- Don't want to go back to antibiotics. But not going higher on salt/C dose- holding..
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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glm1111
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Your VERY welcome. Believe me, it's "My Pleasure"
Gael
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glm1111
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Maya,
As far as the parasites communicating telepathically, I have no proof of this, it's a subjective analysis on my part.
It just made sense to me after much thought. Wondering how Dr. K. came to the conclusion on how parasites control our emotions. I do think he is correct though.
Gael
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Maya12
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Ok I am here now lol
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lax mom
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Maya12
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I know I wonder how dr . K came to this conclusion too, he must have observed it in his patients though, perhaps saw a major difference in a persons thinking and emotions once parasites were eradicated
He may have seen this over and over again with many different patients
I wish he would elaborate on it more though
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glm1111
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surprise,
I do think the "slime" you are experiencing is part of a herx. Mucous is on the symptom list for parasites. When you can, it would be a good idea to add an antiparasitic cleanse to the salt/c.
The salt/c according to lymestrategies kills bb and the cyst form as well. So, you probably will experience a herx that feels like a Lyme flare. This is a very powerful protocol against these pathogens.
Better to keep it slow and steady, so you can continue with tx. If the herxing gets too rough, just take a break until the herx calms down and then resume tx.
Gael
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Maya12
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I did find you guys lol
Hey lax mom how are you feeling now today?
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This is the 3rd day since upping my dose of Salt/C. I'm now on 2,000mg Vitamin C daily and 1/2tsp of Real Salt daily.
Still a very low dose and having some major reactions- both good and bad!!
Last night I had a window of about 1 hour where I felt so normal. I was so happy.
My husband started crying and said "I can't believe your back."
I said "Please, let's not waste this time. I know I'll feel like **** again soon. I never get to feel better let's have fun."
We played words with friends and stayed up until 1:00 laughing and talking and I felt good- I actually felt GOOD. It was one of the best times I've had in so long.
Then at about 2 am, I woke up with severe kidney/liver pain. I started having a panic attack when I realized how much pain I was in. It hurt everywhere- muscles cramping like a charlie horse in my whole body.
I thought if I took magnesium and woke up again with the same pain I'd go to the ER.
I woke up again DRENCHED in sweat. Kidney/liver pain much diminished and muscle cramps were better.
Today I am going to get some milk thistle to help with detox.
I am going to wait until later today to take the salt/c and see how I feel
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glm1111
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Maya,
Your Dr. K. analagy makes a lot of sense. Glad you found us also.
Gael
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Maya12
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BAsed on what we are talking about I thought i would post this from Dr. Klinghardt at one of the confrences:
�Dr. Klinghardt has found immense success in treating parasites as a focus. Many that think Lyme is their problem actually are suffering from parasites. The natural sequence is to treat the parasites first and then treat the Lyme. When this is done, years of antibiotic therapy turns into weeks or months. �Parasite patients often express the psyche of the parasites - sticky, clingy, impossible to tolerate - but a wonderful human being is behind all of that. �We are all a composite of many personalities. Chronic infections outnumber our own cells by 10:1. We are 90% "other" and 10% "us". Our consciousness is a composite of 90% microbes and 10% us. Our thinking, feeling, creativity, and expression are 90% from the microbes within us. Patients often think, crave, and behave as if they are the parasite. Our thinking is shaded by the microbes thinking through us. The food choices, behavioral choices, and who we like is the thinking of the microbes within us expressing themselves. �Patients will reject all treatments that affect the issue that requires treating. Patients will not guide themselves to health when the microbes have taken over. �Viruses in the nervous system are likely not the cause of CFS. They are certainly often present, but when treated, the patient may only get a little better. The two main causes are parasites (mainly lungworm) and chronic nasal staph infection. These nasal infections enter the hypothalamus which then leads to suppression of MSH. One's level of fatigue and level of MSH are directly related. MSH is depressed by bacteria and mycotoxins. �Parasite treatment may be needed for 6 months to a year. �Parasites induce changes in our system to make us a comfortable host.
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Maya12
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And this:
Dr. Simon Yu - Parasites
�When the latest medical therapies fail, think dental issues and parasites. �Dr. Yu uses EAV testing / Acupuncture Meridian Assessment to gain information about stressors in the body. �Unsuspected dental problems may be a significant factor impacting health - amalgams, root canals, TMJ, galvanism, implants, heavy metals, bonding materials, metal allergies, and microorganisms. �Dr. Yu sees amazing shifts in EAV testing results after parasite treatment. He rarely uses antibiotics. �Strongyloides is a common microfilarial worm. Could it be to blame for brain lesions? CCSVI? �Cancer may be related to dental issues, parasites, heavy metals, and unresolved emotions. �Most parasites are outside of the intestinal tract. They are deceptive, adaptive, and difficult to eradicate. �Parasites bring bacteria, viruses, and fungi with them. �Deworming horses regularly is known to increase their lifespan. Deworming is a good anti-aging therapy. �Parasites are like your children that don't leave the house. �You can get parasites from inhaling parasite eggs. �Dr. Yu does not put people on nutritional supplements until the parasites are purged. �Parasites can control your mind. �Clove oil may be helpful. Black Walnut, Wormwood, Artemisia, and Citrus Seed may be useful. �Dr. Yu is not convinced that zappers will work for parasites. �He uses longer, higher doses of anti-parasite medications than what is described in the PDR. He also uses combination therapy.
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Maya12
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how parasites actually do this mind controling i don't know, but according to the good sources i posted above, they do do this
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glm1111
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dayinise,
So glad you at least had an hour of feeling good. FYI, the folks at lymestrategies talk about kidney and liver herxes. It is a sign that the pathogens are being attacked.
Maybe take an even smaller dose of salt/c (maybe half) today, or give it a break until tommorrow if you are still herxing.
PACE NOT RACE is the theme for salt/c and will help you go the distance with staying on this protocol.
Drinking coconut water that is high in potassium will also help your kidneys and keep your electrolytes in balance. Make sure you drink pleanty of water when taking salt/c.
Hope you feel better,
Gael
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glm1111
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quote:Originally posted by Maya12: Breaking up For easier Reading.
BAsed on what we are talking about I thought i would post this from Dr. Klinghardt at one of the confrences:
�Dr. Klinghardt has found immense success in treating parasites as a focus. Many that think Lyme is their problem actually are suffering from parasites.
The natural sequence is to treat the parasites first and then treat the Lyme. When this is done, years of antibiotic therapy turns into weeks or months.
�Parasite patients often express the psyche of the parasites - sticky, clingy, impossible to tolerate - but a wonderful human being is behind all of that.
�We are all a composite of many personalities. Chronic infections outnumber our own cells by 10:1. We are 90% "other" and 10% "us". Our consciousness is a composite of 90% microbes and 10% us.
Our thinking, feeling, creativity, and expression are 90% from the microbes within us. Patients often think, crave, and behave as if they are the parasite.
Our thinking is shaded by the microbes thinking through us. The food choices, behavioral choices, and who we like is the thinking of the microbes within us expressing themselves.
�Patients will reject all treatments that affect the issue that requires treating. Patients will not guide themselves to health when the microbes have taken over.
�Viruses in the nervous system are likely not the cause of CFS. They are certainly often present, but when treated, the patient may only get a little better.
The two main causes are parasites (mainly lungworm) and chronic nasal staph infection. These nasal infections enter the hypothalamus which then leads to suppression of MSH.
One's level of fatigue and level of MSH are directly related. MSH is depressed by bacteria and mycotoxins.
�Parasite treatment may be needed for 6 months to a year. �Parasites induce changes in our system to make us a comfortable host.
Thanks For Posting Maya. Always good to hear what Dr. K. has to say. Good Find!
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glm1111
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quote:Originally posted by Maya12: And this:
Maya,
Can you break up these posts to make it easier for people with neuro Lyme to read, Thanks so much for the info
Dr. Simon Yu - Parasites
�When the latest medical therapies fail, think dental issues and parasites. �Dr. Yu uses EAV testing / Acupuncture Meridian Assessment to gain information about stressors in the body.
�Unsuspected dental problems may be a significant factor impacting health - amalgams, root canals, TMJ, galvanism, implants, heavy metals, bonding materials, metal allergies, and microorganisms.
�Dr. Yu sees amazing shifts in EAV testing results after parasite treatment. He rarely uses antibiotics.
�Strongyloides is a common microfilarial worm. Could it be to blame for brain lesions? CCSVI? �Cancer may be related to dental issues, parasites, heavy metals, and unresolved emotions.
�Most parasites are outside of the intestinal tract. They are deceptive, adaptive, and difficult to eradicate.
�Parasites bring bacteria, viruses, and fungi with them. �Deworming horses regularly is known to increase their lifespan. Deworming is a good anti-aging therapy.
�Parasites are like your children that don't leave the house. �You can get parasites from inhaling parasite eggs. �Dr. Yu does not put people on nutritional supplements until the parasites are purged. �Parasites can control your mind.
�Clove oil may be helpful. Black Walnut, Wormwood, Artemisia, and Citrus Seed may be useful. �Dr. Yu is not convinced that zappers will work for parasites.
�He uses longer, higher doses of anti-parasite medications than what is described in the PDR. He also uses combination therapy.
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Maya12
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shoot forgot to break it up
also daynise, i have been getting some horrible liver and kidney pain lately as well as chest type pain and full body cramping, just like what you are getting
this was happening a few days ago, felt like it was hard to walk and my muscles were so tight that i was uncoordinated
i have been on the humaworm now for about 2 weeks and these symptoms seem to have passed for now
before i started on the humaworm the incoordination was getting really bad to the point where it felt like i was going to loose my ability to walk or use my hands
thank gosh these symptoms have passed for now, but i must be on the right track since only the humaworms seems to have made them go away
hope it will pass for good for you soon
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Maya12
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yes this pretty well sums up what we have been talking about with regards to the mind control and of course this is from a very good source
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lax mom
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Maya: I have a bit more energy today. In fact, I've been awake going on 4 hours now!
Like daynise, I too was exposed to well water, twice in approx 2001. I got so sick both times with vomiting/diarrhea I had to go to the hospital.
I never connected the contaminated well-water to parasites.
Maya12
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I wonder about this too, both drinking well water and swimming in a lake at my cottage since I was a child, I never got sick that I know of directly but I certainly was exposed
Also seems like many of us have been exposed to animals for a long time, like myself, my husband and I rescue stray animals
Of course we vet them and deworm them regularly but I have still been exposed I am sure, I also love to garden and apparently you can even pick them up out of the soil
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Maya12
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Have you seen any evidence lax mom?
Glad you are feeling a bit better today
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lax mom
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CD57
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Here is my short intro. Welcome comments on what people think too. At present I am on A-P by Byron White and some Buhner herbs, that's all.
Probably had bart since childhood, possibly Lyme and cos as well. No idea about parasite exposure but grew up with cats, dog, birdm fish, as well as horses in teenage years. Plenty of exposure in long grass. No bullseye until 1996. Strange intermittent CNS symptoms would appear but never disabling or long lasting until I had a baby in 2005. Have travelled to Africa and Mexico.
Then dx and began treatment for bart and Lyme with LLMD (a little babesia) in 2007.
I did have herxes, but no gains followed those herxes. Symptoms are believed by LLMD to be "bartonella" but bart treatment did not help after initial improvements (although it produced hideous herxes).
It feels like my immune system does not know what to do, or that something is blocking it from working.
So far A-P has produced more frequent bowel movements and some hand tremors. I do have the Dr K protocol (RX) here and am supposed to start it. Am thinking about Humaworm instead.
Thoughts are welcome.
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Catgirl
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Daynese, your 1 hour of normal brought tears to my eyes. I can't believe we are all going through this because doc's are missing parasites!!! *#?! Hang in there!
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Maya12
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I second what cat girl said
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CD57
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Yup -- me too. Imagine!
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Maya12
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hey catgirl have you been having some symptom improvements on the parasite killers?
what symptoms have backed off for you?
and CD 57 how long have you been treating parasites or have you yet?
sounds like you and lax mom and i have very similar symptoms
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lax mom
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quote:Originally posted by CD57: It feels like my immune system does not know what to do, or that something is blocking it from working.
You hit the nail on the head CD57! That's exactly how I feel, just never had the words to explain it.
glm1111
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It's pretty mindboggling that SOOOO many highly educated doctors missed this co-infection. Including the Lyme Disease center at Columbia.
What's really upsetting is that Willy Burgdorfer found ADULT FILARIAL WORMS in the original ticks he dissected and as an ASIDE found spirochetes!!
They all jumped on the bb bandwagon and totally ignored this finding and pumped years and years of abx in unsuspecting patients that are chronically ill. The IDSA also is missing these facts as well.
The doctors in this country think that parasites are a third world problem and it rarely exists here. One fact they got right is bb is not that difficult to eradicate and hence the argument in the medical community.
Hopefully they will catch on now given the recent presentation by Dr. H. at the lyme conference declaring that parasites are now considered the number one co-infection.
If not, they go into the category of dumb and dumber. Sorry for the rant, but people are dying and suffering because of this ignorance.
Gael
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Maya12
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hey Lax mom, i know you mentioned that you had anxiety and derealization etc.
do you still have these symptoms, any ocd type thoughts? or dark thoughts as Gael mentioned, any depersonalization?
are these symptoms gone now?
and yes it feels like my immune system just doesn't work anymore either and this is rediculous since i am only 32.
i think it is just so plauged and worn down by the bugs and parasites
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CD57
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Maya, nope I haven't done the stuff you guys have or are doing, just yet. I am on A-P and have the Dr K abx protocol in my cabinet. Have been too chicken to start it! May start with Humaworm first or see what happens on the A-P.
Would like to hear others' histories?
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Maya12
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i ssume we reach a point where the loads of everything and the toxins they produce or pick up and hold onto (heavy metals) eventually do shut the immune system down
but if we lower the load of all of this can we get the immune system to work again?
i sure hope so
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CD57
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Daynise: "Beyond these two exposures, I have been bitten by approximately 215 ticks."
HOLY COW!
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glm1111
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CD57,
Since you asked for feedback, I would start with Humaworm or Parastoy and maybe salt/c. I am not against the pharma drugs, but given the fact it can take a long time to eradicate these parasites, the herbs and salt/c are reported to work just as well and are nourishing to the body.
Sea salt and vitamin C are also very supportive of the adrenal glands.
Keep us posted.
Gael
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CD57
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Gael...what's your opinion on the coinfections then....ie; babs, bart? Are they truly coinfections to parasites?
What do you make of them causing many people to have such a hard time? We hear of years of treatment with Mepron etc.
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lax mom
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Maya: depersonalization-yes, scary thoughts-yes in the past, OCD type thoughts-yes.
The derealization and depersonalization are completely gone. It's all anxiety...but I think the cause is an inflamed brain and nervous system due to all of these bugs.
I'm only 38, so my immune system should not be shot either.
glm1111
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CD57,
According to Dr. K. the co-infections are much easier to eradicate once the parasites are elimated.
I haven't needed anything else to get rid of the other infections except salt/c and antiparasitics. Coconut oil, extra cloves, HCL Digestive enzymes have all been good adjuncts for me.
Gael
Datnise,
Curious as to how you would count out 215 ticks???
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CD57
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LAX mom....so glad that the DP went away for you. Would you believe I have this 24/7 with brief windows of not? For me it seems directly related to infection and perhaps toxins....it appeared 2 months into abx treatment, spiked horribly on IV, and never left!
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CD57
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Gael, Tammy....SO sorry to ask you guys this again...but could you post your histories/chronologies (dx and treatment) also, so we have them in place for reference?
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Maya12
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Hey lax mom how long have you been treating and what have you treated so far?
You are so luckey those sx are gone, this comes and goes for me , but are always there to some extent , have been a bit better lately since starting the anti parasitics
Any idea what got the dp and dr to go? Ie what meds? Or what infections treated got these symptoms to go?
Do you still have the OCD thoughts with the anxiety?
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Maya12
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Could parasite tx get rid of the depersonalization and derealization and dark anxious thoughts?
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Catgirl
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Maya, unfortunately, I have had to go really slow with parasite treatment. I couldn't take humaworm (gave me uti symptoms, which was probably die off, but I wasn't on abx).
So, I've been doing salt c, some cloves in water, A-P and DE. Also two rounds of parasite meds (iver, bilt, alinia, etc). But the med treatments were a couple of months apart. They knocked the parasites back a bit, and gave me energy while I was on them (nice), but the energy didn't last very long once I was done with the meds.
I feel better on the salt c though, so it's a keeper. But I'm also in the middle of removing my amalgams right now. So, I think maybe I should back off a bit? I don't know. I'm going to get someone to art test me so I will know how to proceed. Right now, I'm just guessing. And the metals are getting to me. :(
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Catgirl
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Maya, I forgot to thank you for posting the Dr. K info above (nice to have handy)! Gail, thanks for spacing it out too, I usually skip over big paragraphs that are single spaced--hurts my eyes).
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So well water can cause parasites!? Really? We have well water, so now what should I do? Oh man this just freaks me out,yuk!
Maya, do you also do enemas to help with getting the parasites out? Are you still seeing them? Are you talking anything to bind the metals that they carry?
This is all so confusing to me right now, feel so overloaded and cannot get my brain to function properly, cannot get it. Can anyone explain it as if I was a child? I tried reading Dr K protocol and was horribly overwhelmed and stopped reading and just gave up with it.
Sorry just frustrated right now, don't understand why I feel worse than this time last year. I was doing projects around the house,painting, mudding sanding. I even stained our deck! WTH!
I have a phone follow up the end of this month and I plan to talk about treating parasites and getting checked for genetic problems. Thanks for any input, dee
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CD57
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BBime, maybe you want to try cholestyramine?
I also want to get checked for genetic problems. Could be part of this.
CATGIRL, what is your history of treatment, etc? Have you felt better on anything?
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Maya12
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Hey bb , yes I do also do warm water enemas and use chia seeds and bentonite clay
And cat girl what symptoms do you have?
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Maya12
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And does anyone know if treating the parasites will get rid of the dp and dr and dark obsessive thoughts?
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dbpei
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This is a great thread! Like CD57, I would like to read everybody's history and symptoms and how the parasite treatment has been helping them.
I started Hanna Kroeger Wormwood combo a few weeks ago, but it made me very constipated, despite drinking tons of fluids and eating a lot of extra fiber. So I stopped.
I have just started cholysteramine (I think it is helping!) so don't want to treat parasites just yet - but I definitely plan on it.
I am so happy for those of you who are being helped by this treatment. I have a theory on this. I wonder if when we take all those heavy duty ABX, and lose all the good bacteria, we can no longer fight off the parasites like we did in the old days.
And so they start multiplying and before you know it, they are very comfortable in our bodies and feeding off the bacteria that we are trying to get rid of. Just a thought.
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CD57
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DBpei yes I have thought that as well as I initially did well on abx, then plateaued and backslid. I know my immune system was workimg going into this b/c I had a classic, organized herx with subsequent improvement, rather than the disorganized muddy picture it is now.
Can you post your treatment and diagnostic history?
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nefferdun
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Does protomyxzoa count as a parasite since it responds to ivermectin? If so that is my last infection and as it is incurable, my life long infection.
I do not know if I had any other "worms" because I never saw any but I do know when I worm my horses they do not show evidence of worms either so maybe they are dissolved before being expelled.
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MichaelTampa
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I would certainly put it in the parasite category.
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Maya12
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Hey cd you explained me to a t , at first I was responding to the abx , had a few good times and then went downhill and no abx were helping but I was worse than before starting treatment but am really wondering about the immune system theory that dbpei mentioned
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CD57
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How interesting....I wonder if that explains Gael and Tammy also....I think I remember them saying they were on abx and herbs and IVIG for a long time to no avail....
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MannaMe
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For those who want to rife for parasites - what would be good frequencies to start with?
My husband would like to try rifing parasites first, because his digestive system is sensitive to taking alot of "stuff".
He's been treating lyme & babesia for 1 1/2 years with a little improvement. Hearing your parasite treating stories makes us think it would be worth a try!
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Maya12
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for those with the deep dark thoughts and anxiety, ocd are the thoughts and anxiety constant but get much worse with treatment?
do they bother you on a daily basis?
i just worry that i am nutts because i always fight the deep dark thoughts and anxiety and ocd , just in varying levels
mine plague me most of the time but do back off or cause less anxiety when i back off anti-parasitics and get much worse on them.
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CD57
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Maya, you remind me of myself. Yes it's truly terrible, I spent a lot of time like that. YOU ARE NOT NUTS. The thing that I fell back on which helped me to feel better was reminding myself that the thoughts have NOTHING to do with ME. After awhile a thought would show up and rather than reacting to it, which made my adrenals shoot through the roof and pump adrenaline which turned on my CNS.....I would say, oh yeah, there you are, and then watch the thought go by. Same concept they teach in mediation.
Its much easier if you can detach from those thoughts and not hold them as truth. Have you ever heard of F.E.A.R: false evidence appearing real?
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lax mom
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quote:Originally posted by CD57: Would you believe I have this 24/7 with brief windows of not?
I believe it. I have lived it and it is the scariest **** I have ever been through in my life. I had it for at least 4 years straight. I seriously thought they were gonna lock me up and throw away the key because I thought I was going crazy.
The fact that you have brief windows of not having it means it is not permanent.
I never had brief windows of clarity, I constantly had it. I finally got to the point where I didn't let it scare me anymore. I would go about my day regardless of how weird I felt.
I can't really say what made it go away during treatment.
I just know that after the fact, I thought about it and realized it wasn't happening anymore. I'm still scared it could come back. Once you have experienced that (what I will call) horror, I think you're always fearful of it returning.
Also, no one knows what the heck you are talking about when you try to explain it, unless they've experienced it.
It doesn't mean you are on your way to becoming crazy, which I believed at the time, it just means your nervous system is overloaded and inflamed.
You nervous system can be calmed down and regulated once these bugs and toxins are taken care of.
CD57: I think I remember you said you did nebulized Glutathione before. Is that right?
I find that it really helps my thinking and brain to feel clearer because there is no blood/brain barrier in the nose. (I breathe it into my nose the entire time and just skip the mouth part).
Maya12
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Hey cd57 thanks for the reply
To be honest the fear isn't as bad when I am not treating but def flares more when I treat more
Has this gotten better for you over time with treatment?
I am trying very hard to let the thoughts go by but I wish they would stop all together
I have only been treating though for about 7 to 8 months
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lax mom
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Maya: Ok, I am going to be completely honest with you because I feel like it might help others.
There was one point where the anxiety and scary thoughts were so terrifying, that I had scary thoughts like "what if I flipped out and killed myself with that knife on the counter?"...I knew I would never do it, but having those thoughts freaked me out. I even had my mother come to my house and remove all the knives "just in case".
Needless to say, I've had my knives back for a long time now. Thise scary thoughts are just thoughts. The fact that they upset you means that you are NOT going crazy. Truly crazy people find those thoughts comforting.
Also, truly crazy people don't know they are crazy.
Your nervous system/brain is inflamed right now. That makes you feel terrible. I recommend getting something for anxiety in the meantime...no need to suffer while you wait for the long-term treatment to work. That healing will come...but it takes time and you don't have to be miserable in the meantime.
I have been on Klonopin since March. Of course, it's not ideal...but Gaba wasn't cutting it and each day was anxious torture added onto the torture of this disease and treatment. I just switched to Lyrica since I have face pain (it also calms my nervous system down).
15 ticks (including the one that bit me in 2004 and gave me lyme) I got from normal walks/hikes/etc.
The 200 ticks that bit me this September came from a walk I took on an already terrible day. I just wanted to be somewhere pretty in nature and de-stress.
And I was stupid, and there was high grass, which I walked through at one point and I did expect to see a tick or two, but when I looked down my jeans were red.
I had THOUSANDS of lone star ticks on me.
I ran back to my car and had to take my clothes off in front of an entire soccer team who had showed up while I was on my walk- including my shoes and leave them on the ground.
I know 200 were IN me because we kept count. By the time I got home I still had about 500 on me but only 200 were in my skin.
It took my husband 3 hours to pull them off. I had to get steroid shot and steroid pills and took 20 days of doxy.
I also had to have my vehicle professionally fumigated before I could drive it again.
I took photos of the bites later- not the ticks because I was hysterical- and I looked like I had hives all over my body.
Apparently this is called a "tick bomb". It is rare. And I am unlucky. It is still so upsetting to think about.
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lax mom
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I don't know if I had posted a treatment history:
2006-complete exhaustion, sensitive to light/sound, twitchy eyes, slowly became unable to work
-Drs told me I was Depressed and Anxious-tried every anti-depressant imaginable, couldn't tolerate most of them. Had so much therapy, I could teach a college course on it. Nothing helped.
2007/08-trigeminal neuralgia-treated with multiple rounds of antibiotics, ironically this made me well enough to work in 2008.
8/08-bit by something on my honeymoon (spider, tick, or something) had huge rash-ish thing that wouldn't heal.
Almost immediately I went downhill and could no longer work due to sound/twitchiness/exhaustion.
I was still told I just had Depression and Anxiety.
10/09 my son was born. He had autism traits.
3/11 started having fevers/extreme fatigue for no reason and sensitivity to light and sound and balance problems.
-I was diagnosed with Sensory processing disorder at 36 yrs old! I even started OT and Vision therapy because I wanted to get my life back.
6/11 ID Dr treatd me for Ehrlichia w/ 2 wks Doxy.
Felt great for 2 months. Felt better than I had my entire life. I even felt I no longer needed my therapist and psychiatrist...the "anxiety and depression" were gone. I never knew Doxy was an anti-depressant
9/11 had a flu shot...then slowly fevers/exhaustion returned. This time I started having brain fog and weird headaches. One night the brain fog was so thick, my little son was talking to me and I could not figure out how to say a word.
Early winter 2011-started seeing an LLMD. I kept getting sicker and sicker. I thought it was the LLMD's fault. (was on oral abx and many supplements)
Took son to see LLMD as a shot in the dark. He was IgG positive for Lyme. Within 1 month of tx he was speaking conversationally and making eye contact.
Then took husband to see if his "auto-immune" issues were related. He was IgG and IgM positive for Lyme and bunches of other infections due to prednisone and cellcept use. In fact during his first 3 months of treatment, he was weaning off of the immunosuppressants.
Spring 2012-My husband and I went to the best of the best. My husband was on orals and then IV. He kept making amazing progress.
However, from Spring-Nov 2012 I kept getting worse and worse the more things they would add. (was on many, many oral abx and Bicillin LA, Glutathione IV and suppositories, B12 injections, and on and on).
11/12-hospitalized with sepsis. Immune system now shot. I now have recurrent UTI's.
Started seeing a Dr K trained ART practitioner who diagnosed parasites, viruses, mold, Lyme, Ehrlichia, Babesia.
When I did a 2 day round of Biltricide, I passed liver flukes and felt pretty good those days.
Did 14 day round of pyrantel-wiped me out.
I am now beginning my second round of pyrantel pamoate, started Valtrex and Lyrica.
I cannot detox at all.
I am grateful for Gael, Catgirl, Tammy N and the others who kept screaming "treat parasites!"
lax mom
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Maya: I can remember being wiped out for no reason in high school. Just a normal school day would wipe me out. So, I bet I had something back then...I'm 38 now.
When I was a kid, I played with our animals like pets. One time I had ringworm looking things all over my body from the cows.
posted
CD57, what does cholystramine do for lyme.? When I looked it up its given for cholesterol. I am assuming its given for detox in Lyme is that right?
laxmom where do you get nebulized glutathione? Does this work better than oral? I take oral but only notice effectiveness during a flare if a take multiple tablets. Do you find it helps wit herxes? Thanks
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dbpei
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Yes, BBinme. I have a hard time detoxing, so the cholestyramine is used as a binder to help get rid of the toxins that have been recirculating in my body. I tested high in a marker that indicates my body was not detoxing well(TGF Beta 1).
Some of your stories are incredible. I can't imagine having that many tick bites. So frightening.
I think that I have been infected since summer 2006, but it could be earlier. I had a mysterious summer flu followed by intermittent low grade fevers. I actually tested positive with ELISA but negative with WB that summer following my flu.
Developed migrating joint pain and more sleep problems, but never thought about lyme. I was out in the gardens a lot and had 4 cats. Lots of exposures to ticks and a few untreated tick bites through the years.
I suddenly lost most of my hearing in one ear in early 2011. MRI of brain showed a lesion but I tested negative for lyme with WB - so they ruled out. After hearing loss, the doc put me on prednisone and I started to have these buzzing/electrical sensations (internal tremors) in my head and extremities. Horrible tinnitus, vestibular damage and sound sensitivity followed the hearing loss.
Then I had crazy mood swings, anxiety, and depression. Fatigue set in and then I developed strange bug crawling sensations and odd head aches. It took me almost a year to discover that all of this was caused by Lyme disease.
The ABX never made me feel better. Only worse. My hearing improved slightly until I took zithromax and went totally deaf in bad ear when exposed to loud music at my daughter's wedding. Other sensations never improved while on ABX.
After 1 year of ABX, I went off and instead started herbs. Immune system is now starting to work again since off ABX and using herbs.
I now take Samento and Banderol and am chelating heavy metals with chlorella and cilantro. Taking many nutritional supplements as well. And just started the cholestyramine (CSM).
CSM has quieted my tinnitus quite a bit! I never would have expected this. I hope it continues. I still am afraid that parasites might be in the picture for me and will treat soon.
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CD57
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BB in me, CSM is a binder....binds up neurotoxins from Lyme and mold. A lot of stuff you killed may not have been able to get out and this may help (I have not done it myself).
LAXmom, thanks for posting your story. And quite a story it is! Did the famous LLMD have a theory why you were getting worse and worse or no? How interesting that your husband was just making gains....it seems like the men have an easier time.
I have a question: when you say getting sicker and sicker...does that mean you would herx and not get better, or just no reaction at all? I am SO GLAD the the DP cleared up for you. If I could get rid of that, I could handle all this other crap. I know it's CNS inflammation but since I don't seem to be killing bugs with my treatment I despair of it ever going away. So something in your Lyme and co treatment made it go away...wonder what that was. I will re-introduce nebulized glut. I didn't know that about the blood brain barrier and the nose! Really?
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lax mom
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BBinme: I noticed absolutely nothing from oral liposomal Glutathione. Then I had IV Glut...it was much, much better.
When I no longer had home health, my LLNP RX'd nebuilized Glut. I get better results than from IV. I get it from Infuserve.
I just read through many of these posts and felt so many things. Really helped me to understand what my son has been going through.
The scary thoughts thing was huge for him for a long time.
I also totally believe that the pathogens(parasites and bacteria) in him control his mind. In fact we often talk about the fact that they are tricking him as he has moments when he is resistant to treatment.
In fact the worse he feels the harder it is to get him to do treatment. I say sweetie they're fooling you, they have taken over, come on you have to treat, and he fights back and does the treatment he needs. He even talks to them and tells them to get lost!
As for parasites specifically we started herbals in November and it causes really bad symptoms, neuro to the point where he would pass out regularly and had uncontrollable anxiety.
Now we are only doing diatomaceous earth, which has been helping hisstomach feel better. I also rub clove oil on his feet.
He's been feeling pretty well lately so I'm been putting off adding back in the herbals, but I know it needs to happen soon.
To share he does photon therapy for the lyme, with EAV testing, muscle testing and supplements.
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Maya12
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So I guess it is very common then to have obsessive dark thoughts that cause anxiety, the only thing that sucks is that I have had them basically constantly for 2.5 years
Did you guys also obsess about your symptoms like how the dp and dr make you feel etc?
I just wish I could turn my brain off some days
How many still have te anxious thoughts now and for how long have you had them
I will find it very interesting if these go away with parasite tx
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