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Merida

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@Ryan
Thanks so much for the information. I got diagnosed by a naturopath recently, documented tick bite in Virginia, 2010. Lab corp - 5 out of 10 bands. Took these results and photo of little rash from2010 to my infectious disease doc ( patient for 14 years - takes CFS people) . He did PCR which was negative. But after a lot of reading, the value of the PCR seems questionable, as the blood born phase is brief???

So, Wow, what on Earth are we dealing with? I have been reading about Plum Island. Scary. Strange.

Thanks again. I really appreciate your important info and recounting of your experiences. Valuable for all.
 

Merida

Well-Known Member
@Ryan
Very interesting article. Has anyone had a NeuroQuant study? I am wondering if brain differences are the primary issue, with blood/brain barrier glitches and mold sensitivity secondary?

Reason for thinking this: Many, many CFS/FMS people in my support group ( led large group 13 years) had scoliosis and neck/pelvic issues.
I had several detailed brain MRIs 2002-2006 - including a CINE flow study. These were done with a knowledgable Chiari expert neurosurgeon. I had a very abnormal CSF flow with a small posterior fossa, steep angle of the tentorium, short clivus, and my cerebellum was sitting low - especially on one side. It is suspected that I have a small "hole" where the brain membranes meet and the spinal fluid drains downward. I also had white patches in the brain - where?

These findings were 5 years before any tick bite. And no mold here in this very dry climate.

I have also observed that along with scoliosis there was a lot left-handedness in the group members and/ or their families - including mine. This absolutely is related to different brain structure. My grandson was born with a counterclockwise hair whorl - not usual. Hair whorls are related to brain structure.

Still thinking we should take a good look at our structure, as this may relate to tight dura/ blood- brain barrier differences???
 

Ryan

Active Member
@Ryan
Very interesting article. Has anyone had a NeuroQuant study? I am wondering if brain differences are the primary issue, with blood/brain barrier glitches and mold sensitivity secondary?

Reason for thinking this: Many, many CFS/FMS people in my support group ( led large group 13 years) had scoliosis and neck/pelvic issues.
I had several detailed brain MRIs 2002-2006 - including a CINE flow study. These were done with a knowledgable Chiari expert neurosurgeon. I had a very abnormal CSF flow with a small posterior fossa, steep angle of the tentorium, short clivus, and my cerebellum was sitting low - especially on one side. It is suspected that I have a small "hole" where the brain membranes meet and the spinal fluid drains downward. I also had white patches in the brain - where?

These findings were 5 years before any tick bite. And no mold here in this very dry climate.

I have also observed that along with scoliosis there was a lot left-handedness in the group members and/ or their families - including mine. This absolutely is related to different brain structure. My grandson was born with a counterclockwise hair whorl - not usual. Hair whorls are related to brain structure.

Still thinking we should take a good look at our structure, as this may relate to tight dura/ blood- brain barrier differences???
Yes, have had a Neuroquant MRI. It's dead on for CIRS and so so accurate for lyme. Very important to get one. P.S. I call it CIRS since mold is only a small part of what Mold Illness/CIRS is. It's totality is the stuff that grows from a Water Damaged Building (WDB).

Also you hit on another important factor and that is genetics. It's also important to get a HLA-DR test from Lapcorp. It will help decipher your genetic code for susceptibility. In your case it sounds definite you have post lyme disease. Also keep in mind that mold, or organisms associated with CIRS can grow anywhere. If a sink leaks behind a wall it only takes two days or so for the bad stuff to grow.
 

Lissa

Well-Known Member
Who else in this conversation has been diagnosed with, or suspected of having Lyme with/ without co- infections? I see that mold sensitivity can also be part of the Lyme continuim. I mentioned at another discussion - thinking everyone should look at the NorVect conference - especially Dr. Burrascano and Dr. Horowitz.
Horowitz (on a different lecture) recommends down regulating inflammation with : green tea extract, cucutmin, reservatrol, broccoli seed extract.
I am now looking at the Buhner herbal protocols. People seem to really respect this person.

Is this old news for everyone? I am still in shock here - to think I may actually have tick-related infections that may be responsible for newer symptoms: erratic blood pressure, severe sweating/ heating up episodes, swollen painful knee, diastolic heart dysfunction, left kidney disease, large urine output. I could have mold sensitivity, but live in a very dry area.

Anyone relate to this????
Yes @Merida -- I also have had Lyme. However --- I was diagnosed with ME/CFS first, was ill for 4 years before getting Lyme on top of that. Luckliy I got a bullseye rash and an acute reaction so I knew that there was something else going on in addition to the ME/CFS. I treated successfully with a combo of pharmaceutical and herbal antibiotics. (That was several years ago now so I don't remember the entire protocol... but it was one of the touted Lyme specialist's recommendations.) I did get back to my "normal" baseline of illness with ME/CFS afterwards. And as I've mentioned earlier -- now I'm finding that mold is a serious player in my own health issues.

The other thing I meant to mention to you before -- living in a dry area only counts perhaps, if you are living outdoors? It is my understanding that although we all think of the Southwest as the place to be for hot/dry climate -- there is a supposed correlation to increased mold issues there, from so many buildings having AC units which can cause water damage. Plus newer construction tends to be airtight, trapping moisture within the home.

Speaking from experience, it is mind boggling how hidden mold, even in minute amounts -- can be so devastating to our health. It all depends on the kind and what types of mycotoxins it is producing. Merida -- if you get a chance to read Shadowlands, I think it will blow your mind! I felt like Julie was speaking my language and telling my story. Being a scientist yourself -- I think it will be right up your alley! :)
 

Issie

Well-Known Member
  1. Dr Smith is suspecting Lyme and Babesia even though my Western Blot was negative. I have positive confections that showed up. I couldn't take the cholestyramine. We are actually backing up and treating that more agressively first. Also treating heavy metals and the positive MARCONS. I was antibiotic resistant to 7 antibiotics - so it's no wonder why the Doxy wasn't causing a herx or really helping that much.
  2. I'm still doing binders for the mold. Using Takesumi charcoal, D Earth, zeoBind and citrus pectin. It's hard to get them in 4 times a day and I rotate them through the day. We have a plan.
  3. Then there's a lot of herbals for the Lyme and confections.
  4. BEG spray for MARCONS.
  5. Huge diet changes. Low amylose diet and an inflammatory diet and, and, and......I'm trying to do my best but this part is a challenge.
  6. Parasite cleanses.
  7. There's more...... but you get the picture. BTW - I don't know why this is numbering and can't get it to turn off. But it helps you read it. :)
Issie
 

Issie

Well-Known Member
I agree with Ryan on the Neuro Quant - it really explained a lot for me. It told us why I have brain fog and showed the inflammation and thankfully told me I wasn't getting Alzheimers (I was worried) My brain was swollen in three places compressing two areas and explaining cognitive issues and neurological issues. Ryan is right - it is sooooooo much more than mold - CIRS is a better explanation. I'm thankful to him to have read his story and Found Dr Smith. She is a sweetheart. I feel I'm finally on a path that will give me results.
I live in AZ and there are issues with things here too. There is no perfect place. Because it's so dry things blow around in the dust and we have dust storms. That can blow cactus spores that causes Valley Fever --- a whole other problem. This isn't just a mold issue - it's a biotoxin issue. There can be problems with mechanical things in your house. If you have propane or gas. All sort of possible issues. I wonder if my MCAS will get better once I get a handle on this.
I do however have 5 genetic markers for inability to throw off mold and biotixins. This will be a lifetime thing - I'm afraid. I'm so super sensitive to mold and other toxins now. I react and fast. For sure a canary.

Issie
 
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Merida

Well-Known Member
@Ryan @Lissa @Issie
All I can say is wow. All of this info is so important. I am listening to the entire NorVect conference (2014) on You Tube. Great lectures by Dr. Christian Perronne, Dr. Richard Horowitz, Dr. Burrascano etc. Brilliant. Shocking. Discouraging.

Yes, Dr. Horowitz is finding mold neurotoxins in 2/3 of his patients. He mentioned that Real Time Labs in Texas can test for these. Some new person on the forum mentioned seizures and Horowitz associates seizures with Bartonella.

At another site ( lymedisease.org , I think?) there is a short article on Plum Island. OMG. A man ( he is named, but forget his name) who worked there in the 1950s mentioned the bringing of a Nazi scientist there ( operation Paperclip), a Dr. Targ. The man who is interviewed actually worked on tick borne illness with possible biowarfare applications.

Operation Paperclip was real. A neighbor of mine grew up in Burbank, CA on a street where many of these Nazi scientists resided. The Father of his best friend was a Nazi chemist, who made a comment that my friend remembers, something to the effect, " if you think what we did was terrible, you should know what your own government is up to."

I feel like Pandora's Box has been opened.
May All that is Good, and Strong, and Beautiful be with us.
 

Farmgirl

Well-Known Member
Thank you Farmgirl. I also had low TSH and T4 as well as other co-infections that showed up in the beginning. With you being MTHFR you will need to fight a little harder, but it's possible to improve. I've seen some videos of Dr. Hyman, some Shoemaker Dr.'s, and Dr. Mercola talking about MTHFR. The more you learn about it the more tools you will have to fight with. Wishing you the best of luck. One other thing you may consider for detoxing is CSM. Being MTHFR you may have to start very slow. P.S. A sauna was great for me. If you get one just make sure you learn how to replace nutrients properly.
@Ryan Wow, here you are ill and still helping others...amazing! Thanks so much for that info. I will do more research, but I just found out about the MTHFR. My hubby gave me the green light for the small sauna and I don' t know what CSM is, but I will google it. HAve a great day and feel better!
 

Farmgirl

Well-Known Member
@Merida. I guess that is why we must live one day at a time and do the best we can with what we DO have. Sometimes that doesn't seem like much to me, but I can still walk
( usually) albeit funny looking.
 

Ryan

Active Member
@Ryan Wow, here you are ill and still helping others...amazing! Thanks so much for that info. I will do more research, but I just found out about the MTHFR. My hubby gave me the green light for the small sauna and I don' t know what CSM is, but I will google it. HAve a great day and feel better!
CSM is just one of the many binders to use. Read up on it carefully. Good luck!!
 

Issie

Well-Known Member
I'm still having issues using CSM. Doc has me backing up and we are addressing Lyme and Babesia now. I'm having terrible ringing in my ears. Was thinking it was due to BEG spray - but haven't used it for a week. Still ringing. I guess for some people, if you detox too fast - the lymph can't get rid of it fast enough and there can be ringing. I was told with some - charcoal binders can do it. I'm finding it more with the tintures I'm using for Lyme though. After I use them, it's worse.

Diet is so far the hardest part of it. I find I dont adhere as well as I should. But doing my best. Hard when you are traveling.

Issie
 

Lissa

Well-Known Member
I'm still having issues using CSM. Doc has me backing up and we are addressing Lyme and Babesia now. I'm having terrible ringing in my ears. Was thinking it was due to BEG spray - but haven't used it for a week. Still ringing. I guess for some people, if you detox too fast - the lymph can't get rid of it fast enough and there can be ringing. I was told with some - charcoal binders can do it. I'm finding it more with the tintures I'm using for Lyme though. After I use them, it's worse.

Diet is so far the hardest part of it. I find I dont adhere as well as I should. But doing my best. Hard when you are traveling.

Issie
Wow - that's really interesting about the ringing ears! My husband has that... but he's noticed that for him it gets "loud" the closer he is to mycotoxins. There seems to be a direct relationship to exposure.

That said --- it is intriguing --- because he also is treating for Lyme. He's doing doxy (2 months total -- I think he only has a couple weeks left to go.) Plus, he's doing a tick bite formula, and some other tinctures that come together in a 4 pack. Not sure what they are individually, but he says they all taste awful! He's had to back down the CSM to twice a day, just because of all the different stuff he's taking. There is just no way to fit in all the doses, and keep them away from the CSM dosing. SUCH a struggle.

I'm also doing only 2 doses of CSM a day. I dialed it back because I switched thyroid meds (have to wait 4 hours before taking CSM now), and because I was getting so many awful hot flashes too... which seemed to correlate directly to the CSM doses. I stopped CSM for a few days, then started at half doses again. That seemed to help. Now I am back up to two full doses, twice a day. Hot flashes seem to have subsided somewhat. Can't tell if it is the change in thyroid meds, or the CSM dosing.

BUT -- now I am wondering if there is any correlation between my hot flashes and mycotoxin exposure. It occurred to me just recently that I don't seem to have them, or they aren't nearly as bad when I am outside. And sometimes I really flare when in certain stores, or inside our house (a remediation gone afoul). That also would line up with night sweats -- maybe flaring in reaction to the toxins being sweated out at night.

All just ponderings.... good to compare notes with others, as always!
 

Issie

Well-Known Member
@Lissa , I have hot flashes that are MCAS connected. It's one of my signs of an issue. Along with the right side of my mouth and face going numb. I always know when there is a bad mast cell "attack" coming because of the hot flash. My husband can feel the flash coming before I do. He can feel my skin and tell me it's coming.
Funny you mention this as I was just about to write my doctor about it and it being connected to the binders. I'm not doing CSM but some others. The binders I'm using can cause a detox. So possibly, there is too much for my body to handle and it causes a histamine response to the toxins???????? We have to get these toxins to come out of our tissues and organs and it makes sense for there to be a autoimmune response when they exit.
If ear ringing can happen with the binders and/or detox - maybe slowing the detox down may help?????? I really hope it's not permanent.
The BEG spray does have an antibiotic in it that can cause ear ringing. They do want you to stop it - if that happens. They are formulating me a different spray for MARCONS. It will be collidal silver, EDTA and mucolox to make it stick in nose and sinus. (I'm traveling and have made my own and it seems to be working well. Not those ingredients - but close.)
Was Doxy one of your hubby's resistant antibiotics on his MARCONS test? It was one of mine. No wonder I wasn't herxing and it wasn't seeming to do anything. These herbal tintures are seeming to be more potent. And yes, they taste horrible. Very, very bitter. She has me on 4 and one more that we are saving until later.
I agree, I'm so glad to have others to compare notes with. Otherwise it would be a lonely journey.
My sister and one of her sons just got their MARCONS test back and it is positive. My sisters house was positive for mold. And some of her mold test are back and she is positive too.
I feel like we have hit on a very, very important piece of our puzzle.

Issie
 
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Lissa

Well-Known Member
@Lissa , I have hot flashes that are MCAS connected. It's one of my signs of an issue. Along with the right side of my mouth and face going numb. I always know when there is a bad mast cell "attack" coming because of the hot flash. My husband can feel the flash coming before I do. He can feel my skin and tell me it's coming.
Funny you mention this as I was just about to write my doctor about it and it being connected to the binders. I'm not doing CSM but some others. The binders I'm using can cause a detox. So possibly, there is too much for my body to handle and it causes a histamine response to the toxins???????? We have to get these toxins to come out of our tissues and organs and it makes sense for there to be a autoimmune response when they exit.
If ear ringing can happen with the binders and/or detox - maybe slowing the detox down may help?????? I really hope it's not permanent.
The BEG spray does have an antibiotic in it that can cause ear ringing. They do want you to stop it - if that happens. They are formulating me a different spray for MARCONS. It will be collidal silver, EDTA and mucolox to make it stick in nose and sinus. (I'm traveling and have made my own and it seems to be working well. Not those ingredients - but close.)
Was Doxy one of your hubby's resistant antibiotics on his MARCONS test? It was one of mine. No wonder I wasn't herxing and it wasn't seeming to do anything. These herbal tintures are seeming to be more potent. And yes, they taste horrible. Very, very bitter. She has me on 4 and one more that we are saving until later.
I agree, I'm so glad to have others to compare notes with. Otherwise it would be a lonely journey.
My sister and one of her sons just got their MARCONS test back and it is positive. My sisters house was positive for mold. And some of her mold test are back and she is positive too.
I feel like we have hit on a very, very important piece of our puzzle.

Issie
Interestingly enough, my husband's ear ringing correlates directly to mold/mycotoxin exposure. The closer it is, the louder it gets for him. In fact, he has been able to hone in on hidden sources within our home, multiple times. And this was post-remediation, after it was supposedly "clean"!

It seems like hoo-ha when trying to explain it to someone --- but to witness it firsthand, it's uncanny. He zeros in on it step by step, following "the noise". Then almost like a hunting dog, he can point to where it is coming from. Nothing to see on the wall surface, inside or out. No smell. Just this "sound" for him. Then after ripping into the wall (safely suited up w/respirator & goggles of course), he uncovers the source each time.

The closest I can come is a vague neurological sensation that the "rug moved", even on concrete, with no flooring left. Kind of like an earthquake. I used to get that every now and then --- but now I know that (for me anyway) it is a neurological short-circuit coming from mycotoxin exposure. That seems to be my version of immediate sensitivity, and my body trying to warn me. It's almost like having your knees go out, or almost passing out, but not -- because it is so brief.

As for the ear ringing being related to medications -- for him it doesn't seem to be. I don't believe it is a constant, or flaring with dosing. It seems to come and go, or get worse etc. when exposed to contamination. Overall he feels that the Lyme symptoms are completely lost amongst all the other mycotoxic effects.

Neither of us tested positive for MARCONS, interestingly enough. We each had only one antibiotic resistance show up.... so overall we were atypical CIRS. For what its worth....????? So in that sense --- we are only on CSM for now, until we make more progress. Then later I think we would be doing the VIP -- or is it VSP? I forget... I do know there were a few steps of Shoemaker's protocol that didn't fit our circumstances, based on our overall test results.
 

Issie

Well-Known Member
I'll have to pay attention and see if the ringing gets worse in certain areas. It is weird how we "sense" the issues being around us.
I got horribly sick yesterday from going in my friends shop. She and her husband own a auto trim and ascessory shop. I started getting sick in there and left. Then came back later and it was even worse. Then had a full out MCAS response. She is the friend that I'm certain has mold in her house. She and I could be twins with our health. I was sick all night. Have to tell her. She is already convinced of the mold in her house. But this is their livelyhood. I don't see her being able to change that.
I'm glad you guys don't have MARCONS on top of the mold. Sad that your remediation wasn't as through as it should have been. But at least your hubby is a good sensor and with time maybe you will get it liveable and you can start to enjoy it.

Issie
 

Stetson28

Member
Very intriguing observation. I am CDC positive for lyme and babesia but had mild scoliosis and am left handed with Chronic fatigue long before the tick bite. The disrupted CSF flow may be contributing to the inability to clear neurological cranial lyme involvement. Have not been tested for chiari...actually been to scared too, at least with the lyme I can continue to fool myself into thinking this is fixable with detx/herbs/sleep/diet/exercise etc.
Don't forget dental involvement too, apparently old wisdom tooth scar tissue sockets are a favorite location for lots of spiroketes due to the limited blood flow and immune seclusion.
 

Ryan

Active Member
Very intriguing observation. I am CDC positive for lyme and babesia but had mild scoliosis and am left handed with Chronic fatigue long before the tick bite. The disrupted CSF flow may be contributing to the inability to clear neurological cranial lyme involvement. Have not been tested for chiari...actually been to scared too, at least with the lyme I can continue to fool myself into thinking this is fixable with detx/herbs/sleep/diet/exercise etc.
Don't forget dental involvement too, apparently old wisdom tooth scar tissue sockets are a favorite location for lots of spiroketes due to the limited blood flow and immune seclusion.
I've learned most of those tests for Lyme are not accurate, but if you are positive that is a very good sign that you most likely have Lyme. There is a strong correlation between mold illness and Lyme. Here is an article I really liked which may apply to your situation. Good luck to you!! https://www.survivingmold.com/community/as-i-see-it-lyme-disease-and-cirs
 

Stetson28

Member
Excellent article and seemingly a very experienced and compelling doctor on the cross of lyme and mold topics. I have no doubt that mold is a major participant for my illness. So what's the treatment? I noticed he mentioned neuropeptides and possiblely VIP...ok great where do I get it?!?! I haven't gone the route of all the exotic complement tests , C4a ADH, HLA Gene etc., because I have already spent plenty of money for someone to guess wrong or right on diagnosis. At this point I'm more interested in guessing wrong or right on treatment. I have met far too many people that have gone into analysis paralysis finding counter studies for every modality that's ever been written about. At this point I just need to get on board with something.
 

Issie

Well-Known Member
Excellent article and seemingly a very experienced and compelling doctor on the cross of lyme and mold topics. I have no doubt that mold is a major participant for my illness. So what's the treatment? I noticed he mentioned neuropeptides and possiblely VIP...ok great where do I get it?!?! I haven't gone the route of all the exotic complement tests , C4a ADH, HLA Gene etc., because I have already spent plenty of money for someone to guess wrong or right on diagnosis. At this point I'm more interested in guessing wrong or right on treatment. I have met far too many people that have gone into analysis paralysis finding counter studies for every modality that's ever been written about. At this point I just need to get on board with something.
There is an actual protocol in treatment for this. Each step has to be done in order and not before you reach a certain level of healing in each step do you proceed to the next. You can't just get VIP and start using it. Your Lipase levels have to be continually Checked even while on it. I've been working on mold for 3 years now. I had some great advisors and I enjoy science and read a lot. But not until I got a doc trained in this and encouraging me to stick with it - do I feel I'm making headway. I have to look at the small improvements because nothing is coming fast. But I've got a lot going on.....so I will take longer. Diet is really important. There is also a sorting to figure out things as to reactions and why etc. For me, we know I had a tick bite and was very sick when it got found. So that is a complicating issue. I test positive to coinfections. And genetically have the worst ones and inability to throw off mold or toxins. And I have some significant autoimmune issues going on. I would suggest you find a doc trained in this. My doc (and Ryans) after initial consult will do phone conference. So that's an option if you don't have a doc or can't travel. My sister and her son have this too. Even though her doc doesn't have the certification as a CIRS or Lyme doc - she knows what she is doing. So the Docs are out there, you have to search for them. I'm like you, spent lots of money and had a lot of dead ends. But each journey has brought me more answers.
Issie
 
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