red
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Posts posted by red
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Philamom - no need to dilute the peroxide. Just store it in a dark/opaque bottle. Light causes peroxide to break down.
HopeNY - Red's strategy would not have worked for my AC units. They had never been cleaned and were 5-10 years old. Simply squirting peroxide wasn't going to remove the gunk I found in mine. Maybe in the coming years, or for a brand new unit, but not for something that's been used but never cleaned. Too many nooks and crannies and the pans on my units weren't removable. The only way to really clean them was to open the units up. I'll be taking them apart at the end of ever season from now on.
I always open my unit up when I clean. You have to remove the filter and then the outer housing. This exposes the whole front of the A/C unit. The first thing I do is take a full bottle of H2O2 and dump it into the base of the unit. I start from one side and slowly pore as I move along to the other side. This will saturated the pan with H2O2. I then take a spray bottle with H2O2 in it and spray the fins. I also spray into the unit where the blower is located. I make sure I do NOT go anywhere near the controls. THen after this is done I go back and take mild soapy water and continue to rinse the pan to be sure it is cleaned out through the hole that drains outside. Now I have been doing this regularly since the unit was new. But if the unit is years old and has never been cleaned then I would agree this might not clean it. If I thought I had a unit that dirty I would remove the A/C unit from the housing and take it out. I would clean the housing and if the unit is real dirty then I would take it outside and clean it under pressure. Make sure the to try and keep the electrical control unit dry. I might let it sit in the sun and dry before reinstalling to make sure I do not short anything out when I turn it on. Heck I have done this with a cell phone that got wet. I immediately took out the battery and open it up and let it sit in the dash of a closed car in the sun for the day. It dried out the cell phone and I reinstalled the battery and rebooted it. I was lucky as it work.
I hope this makes some sense.
Red
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I completely agree to treat the bite. I understand Red if you live in an area where you are bitten frequently that this could pose difficulty, and maybe you do get some type of immunity from repeaated exposure. But my older daughter has been so devasated by Lyme I would not hesitate to treat a bite with 3-4 weeks of abx. We just found a bullseye on my 3 yr old and she is on 6 weeks of abx, and I have made an appt for her with Dr. J - cannot go through this/let one of my kids go through this again.
Well I drop dead agree with treating a bullseye. That is a classic symptom as far as I am concerned. My wife some 6 years ago had classic Lyme symptoms in the summer without a bullseye. She had a fever with severe joint pain and headaches within days of removing a tick. Doxy knocked it right out so it must have been Lyme.
I am saying that unless someone has symptoms from the tick bite then you do not treat it. I say that with the irony that I had a large expanding rash and treated it moderately aggressively with 200 mg Doxy twice a day for 3 weeks. I still got bart. Now whether Lyme was present (the expanding rash???) I do not know. So I treated what I considered a classic Lyme symptom that being an expanding rash that started 2 days after tick removal. It was a week or two after starting antibiotics that the profound fatigue set in.
But I still stand by the statement that without rash or other symptoms then you do not treat every tick bite. Overuse of antibiotics is big problem in our culture.
I have a neighbor who I swear had classic Lyme for the past couple of years. I was begging her to see my LLMD. She would hang on my car window complaining of fatigue and joint pain and brain fog. I was going nuts trying to get her to move on it. Then one fateful day about 6 weeks ago pow she has a large rash from a tick bite. Good news is her regular doc said forget the test and jump on the doxy. Well low and behold the doxy for this latest bullseye completely knocked out all her previous symptoms. How lucky can one person be. Kill two birds (Lyme) with one stone. I swear this is a true story.
Red
I understand what you are saying but it is not clear to me that children or even adults will always show symptoms of any type after a bite from an infected tick. I wish we could have given my son a couple of weeks of ABX and all would have been right with the world. But children are different. We are coming up on two years to fix my son. I don't know that he has infection anymore but the neurological impacts have a long way to go to heal.
And thanks to Dut for posting the information on the use of ABX with farm animals. I immediately had the same thought.
We have the same problem with humans using too many antibiotics. Drug resistance is not just from farm animals but also getting worse because antibiotics have been given out like candy at halloween. With hundreds of thousands of people getting probably millions of tick bites a year you cannot just give out antibiotics prophylactically for every tick bite just on a very small chance that a few will get sick. Look at what has happened with antibacterial soap causing drug resistance. People want this fortress around us that is germ free but that model does not work.
Red
Red
Wow. You're on a forum where many have had to beg, plead, cry, in attempt to get antibiotics for their children, only to be at times refused - whether it be PANDAS/Lyme. When the physicians in my daughter's pediatrician's office comment about my daughter's overuse of abx, I tell them I wouldn't need to rely on daily abx if they would have treated her when she got a tick bite 6 years ago. I brought her in with joint pain but since there was no bullseye rash...no treatment.
"Wow"? I think you are confusing me with your Lyme illiterate doctor refusing treatment based on solid evidence that you presented many years ago. That solid evidence is the mother who knows the child better than anyone, telling the pediatrician that "my daughter had a tick bite and is now complaining about joint pain". For me that is solid reason to treat the child. What I have been saying all along is that we should not put anybody and everybody on antibiotics the moment they have a tick bite. That is quite different than the story you tell. I could write on forever about the LLMDs who misdiagnosed me with Lyme 8 years ago but it was mold. They fed me antibiotics like candy and kept telling that the severe reactions I experienced was "herxing" which is a good thing that kept saying. I was experiencing multiple chemical sensitivity from the mold/abx. Should I mention that due to inappropriate abx that I was suicidal? Its a 2 way street and abx is not the be all to end all. And I could write on about the 2 different MDs who I saw last year out of state and out of pocket who did find bartonella but also found a way into my bank account to the tune of $10K for all the marked up tests/supplements/office visits and phone consults. Luckily for me I found a LLMD locally who my psychiatrist referred. I also went to a very large University based medical center where I ran a clinic myself for 16 years and saw their supposed "specialist" in bartonella. He told me flat out I no have bart. He said bart is "always" a self limiting disease except in HIV. And he rejected the PCR/DNA analysis from Galaxy Diagnostics as a "lab error" even though he admitted he never heard of Galaxy diagnostics nor Dr. Edward Breitschwerdt who is an infectious disease doctor at NCSU Vet school. He also was not aware that this genius in bartonella (over 130 peer reviewed papers on bart) also has a dual appointment in the infectious disease department of the same University medical school office I was sitting. My grand nephew was just diagnosed with PANDAS by Dr. Bouboulis. I am very aware of the h**l my niece is living right know with this PANDAS child.
I stand by my statement: having a tick bite does not lead to automatic antibiotic treatment.
The problem with doctors is they often do not listen to their patients.
Red
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Since PANDAS 3 years ago and lyme/bart diagnosis 1 1/2 years ago I have been religiously giving probiotics. I have switched them up but it always seems like my sons body sort of rejects them slightly. Symptoms seem increased. i realize that there is a battle going on in the gut, but could the probiotics be leaking to circulate the body, as in leaky gut? I know bart affects the gut in some. Input would be appreciated. Thanks, Kathy
I cannot imagine taking a break from probiotics as long as the person is on antibiotics. The normal gut is populated by millions of various bacteria and without those bacteria the gut cannot operate properly. All you are trying to do with probiotics is to replenish bacteria that the antibiotics have killed. My wife recently started amoxicllin for strep. She had a stomach ache within the hour. 40 billion units of multiple probiotics and her stomach pain was gone.
As for me I found my gut symptoms from bart dramatically improved after starting antibiotics.
Red
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I completely agree to treat the bite. I understand Red if you live in an area where you are bitten frequently that this could pose difficulty, and maybe you do get some type of immunity from repeaated exposure. But my older daughter has been so devasated by Lyme I would not hesitate to treat a bite with 3-4 weeks of abx. We just found a bullseye on my 3 yr old and she is on 6 weeks of abx, and I have made an appt for her with Dr. J - cannot go through this/let one of my kids go through this again.
Well I drop dead agree with treating a bullseye. That is a classic symptom as far as I am concerned. My wife some 6 years ago had classic Lyme symptoms in the summer without a bullseye. She had a fever with severe joint pain and headaches within days of removing a tick. Doxy knocked it right out so it must have been Lyme.
I am saying that unless someone has symptoms from the tick bite then you do not treat it. I say that with the irony that I had a large expanding rash and treated it moderately aggressively with 200 mg Doxy twice a day for 3 weeks. I still got bart. Now whether Lyme was present (the expanding rash???) I do not know. So I treated what I considered a classic Lyme symptom that being an expanding rash that started 2 days after tick removal. It was a week or two after starting antibiotics that the profound fatigue set in.
But I still stand by the statement that without rash or other symptoms then you do not treat every tick bite. Overuse of antibiotics is big problem in our culture.
I have a neighbor who I swear had classic Lyme for the past couple of years. I was begging her to see my LLMD. She would hang on my car window complaining of fatigue and joint pain and brain fog. I was going nuts trying to get her to move on it. Then one fateful day about 6 weeks ago pow she has a large rash from a tick bite. Good news is her regular doc said forget the test and jump on the doxy. Well low and behold the doxy for this latest bullseye completely knocked out all her previous symptoms. How lucky can one person be. Kill two birds (Lyme) with one stone. I swear this is a true story.
Red
I understand what you are saying but it is not clear to me that children or even adults will always show symptoms of any type after a bite from an infected tick. I wish we could have given my son a couple of weeks of ABX and all would have been right with the world. But children are different. We are coming up on two years to fix my son. I don't know that he has infection anymore but the neurological impacts have a long way to go to heal.
And thanks to Dut for posting the information on the use of ABX with farm animals. I immediately had the same thought.
We have the same problem with humans using too many antibiotics. Drug resistance is not just from farm animals but also getting worse because antibiotics have been given out like candy at halloween. With hundreds of thousands of people getting probably millions of tick bites a year you cannot just give out antibiotics prophylactically for every tick bite just on a very small chance that a few will get sick. Look at what has happened with antibacterial soap causing drug resistance. People want this fortress around us that is germ free but that model does not work.
Red
Red
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The Better Health Guy has a new blog post on methylation:
http://www.betterhealthguy.com/joomla/blog/265-methylation
He links to an interview by Sean Croxton of Underground Wellness with Dr Jackson of the Neurosensory Center of Charlotte. Sean has done a lot of great interviews lately with well known members of the Paleo movement.
I notice the "Dr. Jackson" whose photo appears on the website wearing a stethoscope is NOT a doctor of any sort. He is a physical therapist who recently graduated in 2009. THe ART he practices, Active Release Technique methodology which is a form of manuel physical therapy used primarily but not exclusively in sport medicine physical therapy. He is a physical therapist with a DPT. That means he has received a Doctor of Physical Therapy degree. It is a degree the requires 3 years of post graduate work in a school of Physical Therapy. I believe that all physical therapy schools in the US now use the DPT model. It is quite a stretch for this therapist to continually refer to himself as Dr. Tim or Dr. Jackson. In fact I think it is misleading for any physical therapist to refer to themselves as "Dr". Physician's Assistants and Nurse Practitioners have much more medical training the DPTs. They can order diagnostic tests and Rxs for some drugs. DPTs cannot order tests or drugs. Tim Jackson says he trained under Kendall Stewart M.D. to learn about "methylation deficits". Dr. Stewart trademarked the "Sensory View" which are 7 various tests that he brought together under one program. He opened the first "NeuroSensory Centers of America" in Austin Tx. He then franchised the Name and other NeuroSensory Centers of America have opened in other cities including Charlotte NC. Dr. Stewart besides being a trained surgeon also claims to be a "Neuroimmune Specialist". I stand to be corrected but I believe this is not a trained certified specialty field like orthopedics or cardiology etc. I believe that as consumers we need to understand what kind of medical practices we are using. Going in eyes wide open as opposed to hoping this is the place.
Red
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I completely agree to treat the bite. I understand Red if you live in an area where you are bitten frequently that this could pose difficulty, and maybe you do get some type of immunity from repeaated exposure. But my older daughter has been so devasated by Lyme I would not hesitate to treat a bite with 3-4 weeks of abx. We just found a bullseye on my 3 yr old and she is on 6 weeks of abx, and I have made an appt for her with Dr. J - cannot go through this/let one of my kids go through this again.
Well I drop dead agree with treating a bullseye. That is a classic symptom as far as I am concerned. My wife some 6 years ago had classic Lyme symptoms in the summer without a bullseye. She had a fever with severe joint pain and headaches within days of removing a tick. Doxy knocked it right out so it must have been Lyme.
I am saying that unless someone has symptoms from the tick bite then you do not treat it. I say that with the irony that I had a large expanding rash and treated it moderately aggressively with 200 mg Doxy twice a day for 3 weeks. I still got bart. Now whether Lyme was present (the expanding rash???) I do not know. So I treated what I considered a classic Lyme symptom that being an expanding rash that started 2 days after tick removal. It was a week or two after starting antibiotics that the profound fatigue set in.
But I still stand by the statement that without rash or other symptoms then you do not treat every tick bite. Overuse of antibiotics is big problem in our culture.
I have a neighbor who I swear had classic Lyme for the past couple of years. I was begging her to see my LLMD. She would hang on my car window complaining of fatigue and joint pain and brain fog. I was going nuts trying to get her to move on it. Then one fateful day about 6 weeks ago pow she has a large rash from a tick bite. Good news is her regular doc said forget the test and jump on the doxy. Well low and behold the doxy for this latest bullseye completely knocked out all her previous symptoms. How lucky can one person be. Kill two birds (Lyme) with one stone. I swear this is a true story.
Red
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The dr's in list are all Level 3 practitioners.
The list you've posted are certified at a basic level, not advanced. The info is at the bottom of the email.This was the very first certification ever and that too attached to a very expensive seminar. Seemingly one has to re-attend the seminar in order to be able to take the test. It may not be financially feasible for practitioners already trained at level 3 to attend another level 3. Maybe things will be more streamlined in the future.
ART has been around for more than a decade. It is a wonderful tool and there are many good officially trained practitioners. Do please keep in mind not yet certified doesnot mean not yet officially trained by the Klinghardt Academy instructors. Marc Schwartz teaches level 1 and 2 as do many other instructors. Dr Kling teaches level 3 advanced himself.
There are many ART practitioners level -3 advanced to level 1 basic all across the globe. I am a level 3 practitioner myself with official documentation etc and I know of many others local and national. I have trained with Dr. Klinghardt himself at my level 3 training and in his office in Seattle and in Germany. This certification concept is something easy enough but very new and it will take a while for all practitioners to find the time to attend these seminars and get it done. I would suggest you call Debbie at the Klinghardt academy to refer you to an experienced practitioner. She is a very honest, upfront and genuine person who will give you referrals as she understands this certification thing is new.
I am sure there are ART practitioners in every state. I know Dr Harris, LLMD in California has an ART practitioner in his office a few days a week or month can't remember.
AK v/s ART is a moot point. ART was born from AK. ART is more detailed and uses more quantum physics principles per se. AK and ART are both considered bioenergetic testing and it all depends on the skill and experience of your practitioner as to the accuracy. My personal Bioenergetic doc is phenomenal and doesn't use ART but rather basic AK and cranial rhythms Very accurate and very precise. So depends.
Not supposed to use 'ART" abbreviation any more due to some legal stuff but its so hard to keep typing Autonomic response testing every time. oh well.
You say that ART uses more quantum physics principles. I would love to read some scientific papers about ART. As a level 3 practitioner you must have some very good published papers. Would you post some links to published papers. As a biomechanical specialist with extensive training in kinesiology, kinetics and kinematics with 37 years experience I use science for a very different medical purpose. And as someone who is fighting the good fight against bart my interest in is this comes has dual reasons. I use acupuncture and my wife is a level one healing touch practitioner as well as a physical therapist. I also have taken a couple of healing touch courses but only "practice" (LOL) on my wife.
I have read Klinghardt's protocol for "ART". It should be reproducible between practitioners if done according to the protocol. I assume that all level 3 practitioners are amalgam free and otherwise live and practice in a toxin/emf free environment? I would think that given the level of sensitivity of autonomic response testing that all testing should be performed in a very strict environment. Seeing that Kinghardt has promoted removing electromagnetic fields from ours houses I would assume that level 3 means you are practicing in an office that is EMF free? These are questions that as a health care consumer I would be asking before I was tested. Has anybody out there who has been treated/diagnosed with ART made sure they were tested in a clean environment and that their clinician is toxin free (I assume that means they did not have a glass of red wine containing sulfites the night before)?
Thanks
Red
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Hi- my dd7 is going back to LLMD Tuesday- already sent in new CBC and liver checks.
I want to start Bartonella treatment for her- she's on Amoxicillin and Biaxin for Lyme, honestly, feel like we are getting nowhere.
Here is the rub:
She can't take Rifampin, because she is still on low dose risperadone, they are contradicted.
She was on Azithromycin alone forever (18 months?) for Strep PANDAS,
and I truly believe from what I see Azithromycin is now ineffective.
So, without those 2, an effective protocol for Bartonella?
(We did A-Bart already last year)
Thank you for any input.
Mycobutin is a different form of rifampin that will not cause any problems with metabolism of risperidone. But there are other issues with using mycobutin and azithro. together. One is they can cause neutropenia (loose of bone) in adults. How it works with the developing child I do not know. The other one is elongation of QTc heart EKG when these 2 are used together. Again how this affects 7 years I do not know. You might want to talk to your doc about mycobutin (without azithro??).
Red
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A New Phlebovirus Associated with Severe Febrile Illness in Missouri
Laura K. McMullan, Ph.D., Scott M. Folk, M.D., Aubree J. Kelly, M.S., Adam MacNeil, Ph.D., Cynthia S. Goldsmith, M.G.S., Maureen G. Metcalfe, B.S., Brigid C. Batten, M.P.H., César G. Albariño, Ph.D., Sherif R. Zaki, M.D., Ph.D., Pierre E. Rollin, M.D., William L. Nicholson, Ph.D., and Stuart T. Nichol, Ph.D.
N Engl J Med 2012; 367:834-841August 30, 2012
Two men from northwestern Missouri independently presented to a medical facility with fever, fatigue, diarrhea, thrombocytopenia, and leukopenia, and both had been bitten by ticks 5 to 7 days before the onset of illness. Ehrlichia chaffeensis was suspected as the causal agent but was not found on serologic analysis, polymerase-chain-reaction (PCR) assay, or cell culture. Electron microscopy revealed viruses consistent with members of the Bunyaviridae family. Next-generation sequencing and phylogenetic analysis identified the viruses as novel members of the phlebovirus genus. Although Koch's postulates have not been completely fulfilled, we believe that this phlebovirus, which is novel in the Americas, is the cause of this clinical syndrome.
to read more please go to:
Fear the tick! (That's a joke for you Maryland Terrapin fans). They say this is a "new virus". Well the technology to detect this virus is state of the art so really medicine has no idea how long it has been around. It sort of like calling America the "New World" when Columbus showed up. It wasn't so new to Indians whose forebearers lived with Wooly Mammoths . Here is a little more info on the article at
These farmers actually got sick in 2009 a full 3 years ago but it takes awhile for some of these things to get printed. In the piece at NBC news it lists some of the CDC 10 tick diseases. It finishes with "There's also Rocky Mountain Spotted Fever, an old disease that still strikes about 2,500 people a year". So RMSF is an "old disease" and all the others are new??? Maybe this reporter never read the recent piece on the mummified remains of the 5000 year old man on the Swiss Alps. They found Lyme DNA in him. http://www.crystalinks.com/oetzi.html To quote that article "1st documented Lyme case". I wonder if his medicine people told him there is no such thing as Lyme is the Alps. LOL
Harvey
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I do think the Metametrix report is easier to read. Genova & Metametrix are actually in the process of merging into one company.
I had never been to Genova's website. As I unfortunately know far too much about prostate cancer I decided to look up prostate cancer.
Under PCa they say "High testosterone as well as impaired estrogen metabolism may increase the risk of prostate cancer".
There is absolutely not one scientific study that shows a relationship between high testosterone increasing the risk of prostate cancer.
And as far as I am aware there are also no studies showing "impaired estrogen metabolism" may increase the risk of PCa".
I hope Genova is better informed on other medical issues, example parasites, that seem to be important to many people in this forum.
Red
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Hi,
We went to the North east area from Dallas to find a good LLMD and stayed in Washington DC for the last day ( 25th) in an apartment my husband stays( he works there and travels). On 27th,he saw a lot of bugs in the apartment and asked the apartment to eradicate them. They just told him it was bed bugs. On 27th here in dallas my son complained that he a lot of bite marks on his body and they look like they are bed bugs bites . I'm very scared here ....I have already opened the suitcases and left it opened for the last 2 days. Yesterday I cleaned all the clothes and dusted the suitcases outside. But I'm worried that they would have already crawled out if they were on the suitcases. Yesterday the whole day I was worried. We went to get my son cured and came back with more problems.
today I got a scare when my son went to the bathroom to bath and found 2 bugs in his groin. He pulled them out before telling me ....they are pin sized and full of blood. I am freaking out here......I stored the bugs in a container....I do not know what to do now.
So now he is bitten by beg bugs and ticks....just by visiting virginia. I dont have an LLMD here in texas......but I do have DAN here who will prescribe me anything I want. Please tell me what is the first line antibiotic to use in case of tick bites.
I am freaking out here. Please help.
Thanks,
Sam.
You do not do a darn thing unless someone becomes symptomatic and or develop a rash (granted a rash only occurs in Lyme+ people about 30% of the time). My goodness do you know how many tick bites us country folks get a year? In a good year we will get only 50.
This is the worst time of year for us as you can walk through a nest of "seed/nymph ticks and get 30 or 40 on you. They are like pin dots and very hard to make out. I took apart a pair of binoculars and use that for major magnification. Just think what it is like to get 5 of those little suckers attached to your scrotum (sorry but there is no other way to put it as it happens all the time.) Thank god for my wife and the tweezers and magnification. Make sure you remove the pinchers of the tick!!! They break off all the time even with experienced hands. And it is not just tick bites that carry problems. I counted 15 or so various bites I received yesterday just from mowing the lawn. August is the worst time of the year. I would be on antibiotics full time if I took them for every tick bite. Of course that is kind of funny as I am on antibiotics full time right know for bartonella. So LOL on me. Speaking of bart it does not just come from tick bites but all sorts of avenues of transmission including cats, dogs horses and other insects than ticks. One cannot allow themselves to freak out at every tick bite. People suffer hundreds of thousands of tick bites a year and only a relatively small percentage ever get sick. It is ironic that I got bartonella (as least I am pretty sure without writing a long history) when I was on antibiotics for a tick bite. I had removed a tick and about 2 or 3 days later an large expanding rash appeared. Now I had plenty of doxy in house so I hit it with 200 mg twice a day for 3 weeks. I still got bart! Was it from that fateful tick bite back in Sept 2007?? I'll never know for sure but when I trace my symptoms backwards from my + bart test from Galaxy Diagnostic last Sept./2011 then it seems that is when it all started.
But in the meantime I just try to find them before the get attached and remove them if they do get attached and live my life. Otherwise I would go crazy thinking about it.
Red
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Yes...definitely a freaking awful experience...but at least I know what is going on, vs. when my kids first got sick, and it took, literally YEARS to get any kind of dx (until then, the docs tried to claim one of them had "conversion disorder" (despite seizures, chorea, tics, massive OCD, anxiety, and even scarlet fever with a 104 fever that landed him in the hospital with what they thought was ARF!) The other was dx with Asperger's, and all these years later, it's clear that the Asperger's was, basically infection and environmentally triggered (got tremendously better with heavy duty tx.)
We're using a different company than the one that put in the new a/c. Actually, I don't think the smell is necessarily from the a/c or, at least from improper installation. We were having the problem with the old unit still in, and I really think there's a great big hole in the intake ductwork that they are having trouble seeing through all the dirt.
Oh, and the good news is, that DS said the basement windows do open...just difficult to do!
I'll let you know how it all goes. Looks like the flooring guys may not be able to get to it this week, which means everything gets put off until the end of next week, due to the holidays. I'll hear tomorrow what the air samples come back as.
So if the source of the VOCs is not in the A/C unit then you have some sleuthing to do. There is somewhere where mold is growing and giving off VOCs hence the mildew/moldy smell. Why clean the house until you find the source and remove it? All you are going to do is end up with the same problem. It is like a cavity in your tooth.
Red
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A/C guys are the ductwork guys (they do both,)and yes, much is in the basement. The washer and dryer are not in the basement. My hope is that while cleaning, they will find the original reason we had them here...why the smell from the basement keeps coming up through the ducts. Maybe I can open all windows and doors to the house as a whole, and set up our hepa filter that has been running upstairs the whole time, so we have even another source of filtering. Not perfect, but it might be the only option. Afterwards, we are having the whole house cleaned completely (I'm even having the unfinished basement cleaned.)
I hope you are correct. It seems to me that if the VOC smell is on their when HVAC is on then the HVAC is very suspect. Now if they were the ones who installed it will the be honest enough to admit that guess what we screwed up and the whole thing is backed moldy water in the drain pan.
They will undoubtedly show up with a shop vac with a standard filter in it. It will nowhere be near HEPA standards. Ask them if they have a HEPA filter for their shop vac.
good luck.
IT is a freaking awful experience isn't it?
Red
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A/C guys are the ductwork guys (they do both,)and yes, much is in the basement. The washer and dryer are not in the basement. My hope is that while cleaning, they will find the original reason we had them here...why the smell from the basement keeps coming up through the ducts. Maybe I can open all windows and doors to the house as a whole, and set up our hepa filter that has been running upstairs the whole time, so we have even another source of filtering. Not perfect, but it might be the only option. Afterwards, we are having the whole house cleaned completely (I'm even having the unfinished basement cleaned.)
I hope you are correct. It seems to me that if the VOC smell is on their when HVAC is on then the HVAC is very suspect. Now if they were the ones who installed it will the be honest enough to admit that guess what we screwed up and the whole thing is backed moldy water in the drain pan.
They will undoubtedly show up with a shop vac with a standard filter in it. It will nowhere be near HEPA standards. Ask them if they have a HEPA filter for their shop vac.
good luck.
IT is a freaking awful experience isn't it?
Red
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OK. Great suggestions. Now for the toughie. How would you suggest venting through a window that doesn't open? Neither of our windows in the basement open. Do they tend to have long hoses that they can bring up and out of the house?
And, back to the original question. Would you suggest using the cleaning agents they are talking about using? I can't imagine just brushing it clean will get everything out. Even if the air tests "negative" for mold, I know for sure that the black mold that was in the bathroom was cleaned without the vent being properly covered (they used aluminum foil, and every time the a/c came on, the tape didn't hold, so everything they stirred up (including whatever they used to clean the floors, which seriously stunk) was sucked into the ducts, and spread all over the house.
Ouch no windows that open? Are the duct work guys working in the basement or just the a/c guys? How about a dryer vent? Is that an option.
As for the cleaning product I am clueless but remember the coil sits in a pan and the pan which collects water during dehumidifying has a drain to the outside. It has to drain somewhere so after they clean it they can also use mild soapy water and rinse and rinse with clean water it until all the product is gone.
But the vent guys have to vent it outside somehow.
Now some vent cleaners are set up so there vacuum systems are on the truck outside and all they do is come in with long hoses and it all gets suck through the huge vacuum machine on the truck. Otherwise?
Red.
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We make up our own Arnica from flowers soaked in grain alcohol. We soak it in the sun for 6 weeks and then drain off the alcohol. I would not use it on a child but we find it very effective for minor aches and pains. Now when it comes to my bartonella pain then we are talking something different.
She might or might not be herxing. If it continues you might consider backing off the meds. I am a big believer in backing off meds during major herx type events, whether caused by die off or inflammation. I believe that it overloads the body and the mind. And then to think of an 8 years without the intellectual/frontal lobe ability to understand what is going on just makes it harder on her.
Red
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My DD8 in month 5 of treatment for late misdiagnosed Lyme, she took 60 days of augmentin/biaxin and now 60 days of Doxy, switching back to the first combo for school. I think she was infected 2.5 years before Lyme detected. She also has PANDAS/Myco and a few co infections, so far testing negative for Bart and Babesia. She had terrible hip arthritis that went away after the 60 days of Augmentin/Biaxin. Other leg pain continued, but she has been doing much better. Yesterday we went to the beach, after a few days at Hershey park and Sesame. I thought the salt water would be a good detox. Boy was I wrong. Had a horrendous episode last night, she said she was in massive pain all over and was afraid to go to sleep because she thought she would die. She flat out refuses to take Advil, I rubbed her legs with Aspercreme and snuck some advil into her milk (not enough of a dose though). After about 30 minutes she seemed to get better moodwise. My question is, should she be in so much pain after 4+ months of heavy treatment? Do I need to consider IV abx? (our LLMD thinks we are a long way off from that). could something else be wrong? Why would the ocean cause this? I have noticed a definite link between swimming and PANDAS symptoms, but I thought it was chlorine. But this massive pain flare has not happened since she started heavy abx. All thoughts welcome. BTW she was awesome on our trip, had a blast, got along with her sister, and almost no complaints.
I think you should read the warning label on apsercream Aspercreme Cream should be used with extreme caution in CHILDREN younger than 12 years old; safety and effectiveness in these children have not been confirmed. Read more at http://www.drugs.com/cdi/aspercreme-cream.html#018KIuBsTDIQXEYZ.99
Also your are mixing ibuprofen with aspirin the active ingredient in aspercreme. Never take aspirin and ibuprofen together even in adults. Also aspercream contains the following chemicals which should be avoided
DMDM Hydantoin
Phenoxyethanol
Propyl Paraben
I know little about PANDAS except that my grandnephew was just dx'd with it. As for Lyme everybody is different in terms of recovery.
Red
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Thank you for all the info. I thought you said, though that you didn't have lyme (I guess you aren't including bart in that, but I consider that a co-infection. DS16 has bart, babesia, and erlichiosis, and we've been treating for that for 2 years now. I have bart, and both of us have been taking rifampin for about 1/2 a year now. Plus I take azith (2 years), because of mycoP, and he takes tindamax (we pulse the rifampin and tindamax, and his stretch marks are fading very nicely.
But, I have a question for you about the cholestyramine. Our LLMD put us both on it, and then I was reading, and found it can cause bone loss. I have osteoporosis (in my back) and osteopenia in my hip. The last thing I want is to get more bone loss, and I'm very fearful of causing it in my son. What are your thoughts on that?
I have done accupuncture, and got incredible results for my mycoP...I was 100%, and it was an absolutely aamzing feeling. I've tried chinese herbs, but didn't get such amazing results, but they helped a little. I have heard, though that chinese herbs can contain a lot of mercury and other hard metals (our chiropractor who actually has used them herself.) Any thoughts on that?
OK...we are getting the air handler cleaned. I talked to the a/c guy yesterday, and he said he can clean it in the basement (was hesitant to clean it at all with only 1 year on it, but when I told him how botched up the bathroom remediation was, he instantly agreed.) But, he wants to use the chemicals to do it. I've researched this, too, and found a site (now I can't replicate the site), but it gave pros and cons of each method. Unfortunately, I don't necessarily know what's in the stuff, because they said that these chemicals can have some pretty harsh stuff in it, but they don't have to disclose everything, because it's proprietary. My husband is very much against cutting the freon line, draining the freon (or whatever they've replaced it with these days), to take it outside. So, I'm stuck with having it cleaned inside. These a/c guys have 50+ years experience between the 2 of them, and they really do seem to understand the necessity of getting this right.
I may just do what you are suggesting with the carpet. It means taking off another day of work (I have to get ds to the doctor on Thursday after attending a business meeting in the a.m., so it would have to be Wednesday, if the carpet people can even do that.) There's so much to do with so little time. I want them to go ahead and put the new flooring down right afterwards, so we can walk on it (we only have bathrooms upstairs now, because the one downstairs is still in contention.) I was going to have DH supervise the whole thing, but I don't think he really understands how it needs to be done. Personally, I wanted to be as far away as possible.
I have actually made up a list of how DS and I were before everything started, after the initial assault (handiman's bad removal), and then how much worse everything got for both of us after the botched remediation.)
Anyway, I just noticed the time, and have to run. Do you think the mold is out of you, or are you still fighting that?
Thanks for all the grest suggestions.
Yes mold is out of my life although I have had two exposures since I had radiation in 2008. Both exposures were about 2 weeks long. Kind of bizarre as both were in my lab/shop. I had a leak in a window a/c unit that got a bench wet while I was away for radiation. And when I went back to work I thought my shop smelled from mouse urine ( I was gone for 3 summer months) but it was this bench. So I got moldy as we say and figured out it was the bench. After having the bench removed and then completely disassembling and cleaning and fogging the shop and CSM for a couple of weeks I recovered. Now can you imagine that I was barely able to work 2-3 hours a day as a result of radiation/hormone therapy and unbeknown to me at that time bartonlla and I take a major mold hit on top of all that? I thought I was going friggen crazy. Then 2 years later of all things I had mold growing on the outside of the metal shop door and I did not notice it. It had been a very wet warm spring. I kept complaining to my wife that I was feeling moldy and a few days later she said look at your shop door. Imagine every time I opened the door spores just flew into my face!! So I cleaned it and CSM for a few weeks and I was fine. As far as our house is concerned it is drop dead clean. Details details and more details but it is clean.
I do not have Lyme. Virtually every single test says so including good CD 57 lymphs. I only put that link to the TCM for Lyme heart issues because that TCM heart protocol can also be used for bart and mold. As for bartonella being a co-infection I would say it stands on its own. Dr. Breitchwerdt's work at NCSU vet school has proved that bart is a stand alone infectious disease and that it can cause an awful lot of symptoms. He has also proved that false negative titers for bart are very common. I have read over 100 of his scientific papers on bart. His father even died from bart!! It is a compelling story. "A Groundhog, a Novel Bartonella Sequence, and My Father’s Death". http://wwwnc.cdc.gov/eid/article/15/12/ad-1512_article.htm In fact I have discussed this with a couple of LLMD docs and the belief is beginning to slowly take hold that bartonella is a much larger problem than most LLMDs recognize. In fact during these conversations these docs said the a lot of bart is misdiagnosed as Lyme. My LLMD automatically treats all Lyme+ patients for bart as she thinks bart is way under diagnosed. I even had my border collie tested to make sure we were not giving it back and forth to each other (want a paper on dogs and bart? I can send it). He had been licking his joints a lot over the winter and I was concerned he had Lyme or bart. I put him on a diet and he lost 8# and his joints feel a whole lot better.
As for osteoporosis and CSM I cannot say. CSM does remove Vit D from the body so I think it very important to either supplement and or test for D levels. I keep my D levels high to protect for prostate cancer. Another thing to remember about CSM is that it is a temporary medicine. Also many people with mold have loose stools just like IBS. If you are not digesting and absorbing your food as a result of IBS then that actually contributes to osteoporosis. CSM shuts down IBS.
As for your a/c guys with 50 years experience that is meaningless as they do not know a thing about mold. Clueless is clueless. They are a/c guys not mold guys. They would not know mold if they saw it. Heck most mold remediators do not get it. Many literally take a weekend course claim expertise. The field is not regulated in most states. They may say your coils look fine when in fact the fins could be covered in microscopic mold spores. To them a little dust is a little dust. I know the duct work guys are going to run the air through a HEPA filter but make sure they then VENT THE AIR COMING OUT OF THEIR HEPA MACHINE OUT A WINDOW OF THE HOUSE. I have been their and done that. They are going to stir up a hornets nest with brushing and air flow. Even HEPA air filters do not contain all mold spores. We had a new HVAC system installed but because some of the remaining supply side ducts were in a finished bedroom basement ceiling we short cut the process and just "cleaned" about 30 feet of metal duct work instead of tearing the ceiling out. Now this was supply side (air flowing out of HVAC system and into house) duct work. Anyhow they promised they would vent the vacuum cleaner air out the basement window even though the vacuum cleaner had HEPA filtration. I knew it would not contain all of the mold especially because of the high pressures they use. So we left and came home afterwards. And within 30 minutes my wife and I were drop dead moldy sick. I called the owner and low and behold he said that yes they did NOT vent outside the window like we agreed to. He then argued with me that what little mold did make it through the HEPA filters was not enough to make us sick. He even emailed me before and after pictures. And it was quite obvious to me that even in the after pictures there were small spots throughout the 30' duct that had not been cleaned. So a huge argument ensued and he refunded some money and I had to clean the basement area that they screwed up. And all this from a mold remediation company that also does duct work. THat is just one brief story of many screw ups we experienced during remediation. We eventually said screw it and took money out of retirement and gutted our house to the core and remodeled it using all green materials including sheet rock and insulation that cannot grow mold. That paid for itself the first winter we were back in the house and I was horrified to see fresh water stains on my brand new sheet rock. Well the chimney had a minor crack and leaked in a torrential rain. So I went up on the roof and slabbered tar on every crack I could find. It stopped the leak but most of all I knew everything was sealed and the special insulation and sheet rock was not going to grow mold!! We also sealed all interior wood with ForSite a paint with silver in it. Mold cannot grow through or on this silver paint. If you want horror stories I am full of them: even the HCAC guys screwed up the installation of the whole house HEPA filtration system. Good thing I figured it out fast. Phew and that is the short version.
Mercury in Chinese herbs. Well we are all aware of some of the nasty products coming out of China. Mostly what I have heard is that some refined herbs may be contaminated. But I have to trust my OMD. She is extremely careful about her sources for fresh natural herbs (non-refined/processed). I have talked to her about it so I am putting my trust in her.
Red
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The dog has made on the carpet plenty of times, and then my kids, in an attempt to make sure they got all the pee up, added a whole bunch of 409, placed a towel over it, and left it (stayed wet for days!) Plus, the dogs before us had made all over the carpet that was downstairs that we eliminated already (although, it was obvious there were stains on the subfloor, there was no evidence of mold, luckily. But, my fear is that there may be mold on this carpet (even the dog scratches continuously when he's on it,and actually likes it...he rolls around on it...i think it feels good to him). I'm afraid that if I cut corners by getting the regular carpet guys to remove the carpet, they may release even more into the air.
On the other hand, I suppose I could get that removed first, then clean the ducts. The ducts are extremely packed with dust, and I'm sure, now, dry mold. We had the ducts cleaned last year, but I saw first hand the mess in the ducts when I had the a/c guys here the other day (they put a camera up the ducts.) I will call them, though, and ask how easy/difficult/impossible it would be to check the coils in the air handler,and get it cleaned out outside (it would have to be brought upstairs, and I'm sure the freon would have to be removed first. Not an easy process.
Mold test results are coming back on Tuesday, and he did test the a/c as well, so we'll see what that comes back as.
I agree, that all they had to do was properly block off the vent, and I intend to make sure they and insurance are well aware that they not only released mold and other toxins back into my entire house, but also poisoned us with who knows what in the cleaner they used. Short of suing them, I don't know what else to do at this time, unless they agree to pay for EVERYTHING (and I'm not so sure that the carpet is totally their fault.)
When the flooring guys come out tomorrow to give me a quote on putting down the hardwoods on the stairs, I'll ask them how carefully they removed the existing carpeting. Also, if they notice any mold, they will have to stop immediately, and I will get a mold guy out here. I don't want them putting down flooring on top of mold.
I will actually be out of town next weekend, and my son does not want to come with me, so he and his dad will probably stay in a hotel for a few days. But, I know that my DH cuts corners with stuff like that, and I won't be here to supervise it. So, I want to make sure that things go right the first time.
There are so many decisions to be made about all of this, and because we can't keep breathing in the bad air, I have to move quickly.
BTW...How are you feeling now?
Well I seem to be improving. I have stopped augmentin and low dose rifampin and am doing azithromycin plus TCM (traditional chinese medicine) herbs that I boil. I have an OMD (oriental medicine doctor) I see for acupuncture and herbs. I had not been seeing the OMD but after struggling severely with multiple antibiotics I thought about bringing an herbal protocol into process. A guy named Greg Lee who practices at Two Frogs http://www.twofrogscenter.com/ in Maryland put this TCM protocol on Goodbye Lyme Website.
http://goodbyelyme.com/free-articles/coinfections/busting-bartonella I asked my OMD to access the protocol. Now she has written a textbook on Chinese Herbs and practices and lectures internationally. So she knows it. She said that the protocol looked pretty good and needed to assess me. So we made up the first batch and boy did I herx big time. Way too big time. So I stopped and threw it away and she reformulated the herbs. I am now tolerating the herbs + azithro pretty well. Now I might still need to add rifampin or muycobutin to this later to get a total (hopefully) kill of the bart. Rifampin is a whole other animal because it is a major inducer of the CYP3A4 pathway. So that means many drugs, possibly up to 50% of all drugs are hyper-metabolized by Rifampin induction of CYP3A4. What that means is these other drugs (including azithro. are metabolized in the liver and never get into the blood stream. So rifampin is not something I want to mix right now due it both the severe herxing but also a problem with herbs. So right know I am trying to just get a slow kill that I can tolerate over a period of time. I have also added a broad spectrum of antioxidants that reduce NF-kappa B the main inflammatory protein produced by bart. For more on that see http://www.bu.edu/nf-kb/ and also for inhibitors of NF-kB see http://www.bu.edu/nf-kb/physiological-mediators/inhibitors/ I am not a believer in detoxing from bartonella. There is a lot of folklore out there and I think a lot of people are doing some pretty dangerous things without any scientific validity about detoxing: I think bentonite is or can be very dangerous and I cannot believe people are using this esp. on children. I think epsom salts at best produce analgesic benefits. In order for epsom salt to detox it has to cross the epidermal layer go into the blood stream and then come back out into the bath. There is no evidence the epson can do that. I believe you have to set the liver up to do its job and reduce inflammation as much as possible. I also have had my P450 cytochrome profile tested and I am an intermediate metabolizer of many drugs on the 2D6 and 2C19 pathways. Because I am an intermediate metabolizer that means a lot of drugs I need only a low dose of to reach a therapeutic effect. So I figure that has some interplay with my herxing events: most likely making them worse. My LLMD says I am the most sensitive bart patient she has ever had. So I have to tip toe threw the tulips as Tiny Tim sang.
This gene testing ( http://www.healthanddna.com/healthcare-professional/how-to-order.html )
has proven invaluable as I can cross reference drugs and remove and or reduce the possibility of drug interactions. The program has some herbs in it also so that is a big plus.
Now when it comes to mold, detoxing with Cholestyramine makes perfect scientific sense and Shoemaker has proven that. And I can also say that it worked extremely well on me and my wife. But I have tried CSM for bart and it has not touched it. That is because I believe bart and die off from bart is not found in cholesterol like mold. Whereas mold is fat soluble and loves cholesterol and brain tissue which is full of fat mold. There are some things that help promote phagocytosis which is the most important part of detox. But there are some side effects that I am personally a little wary of. The one that I would like to try is Siberian ginseng (Eleutherococcus senticosus) promotes phagocytosis. I have it sitting here but seeing that I have had a heart ablation (mold+ later bart) for atrial flutter I am a little concerned about taking this at least at full strength because it can cause heart arrhythmia. Now Greg Lee has another good piece about protecting the heart with TCM herbs @ http://goodbyelyme.com/free-articles/healing-pain/heart-herbs So I might talk to my OMD about this later. I do not want to add to much at one time. Just bart by itself is complex enough. It makes mold look like a picnic to me.
I still think your carpet is not as important as your air handler and coils. There are ways of cleaning the coils without removing them. Maybe not as good as removing the coils but at least you can get most of it plus you clean the unit around the coils. If your duct work is as bad as you say it is then the coils are screwed also as well as the box that contains the coils. Is there any difference in how your return air ducts look vs. your supply air ducts? Supply side is the air ducts that are blowing air and the return side is where the air is being sucked back into the system. If you insist on doing the carpets a certain way (plastic and rolling) and are present to make sure of it done correctly then you are ahead of the game. Wear a full P100+ voc respirator that you can buy at your big box store and stand there to make sure it is done correctly. To make sure you are getting a good seal put rubbing alcohol on your hand and just pass your hand around the respirator. If you smell the rubbing alcohol then the respirator is not sealing against your face properly.
Red
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I'm actually going quickly, because having the a/c on is spreading everything around, and it's too hot to keep it off at night (no one can sleep.)
But, I have been talking to a mold guy who can remove the carpeting with containment and negative air ($1400 which seems terribly expensive, but at this point, it's been almost a month, and I can't keep going with this.) I would also have him treat the subfloor, and he would also re-clean and encapsulate the floor of the bathroom if necessary. I am not putting down new carpeting. Once the staircase and bathroom are fixed, I was planning to immediately have the ductwork cleaned at that point. My husband said there is no way we can get the air handler taken apart like that, but I can certainly ask the a/c guys. All the rest of the floors in our house are hardwood or laminate, and we would be having hardwoods put in on the stairs and hallway.
I'm planning to insist that insurance (or better yet, the company that screwed up) pay for extremely heavy cleaning of the house (after the carpet is out and the ducts are cleaned)...using our own equipment only. Would washing the floors constantly rather than vacuuming work better or the same? I am just so angry, because I feel like they exposed us to even more mold and toxins, plus exposed us to whatever poison they were using to clean the floors!
That's interesting about the stachyb. I'll ask our guy about that.
Basically, though, we can't put this off, as we can't keep breathing this stuff in. We are all really suffering, and having major flareups of our lyme and co-infection symptoms. DS even had an instantaneous rage attack against his brother last week, and I had to leave a doctor's appointment of my own, and race home. My other son was able to get away from him somehow (had him in a headlock,) and got to his car, and drove away to safety! He was pretty badly injured. My son hasn't done that in several years!
I have 2 HEPA filters running continuously. I know many people are able to move out of their houses while all this is going on, but short of moving into a hotel, we just have nowhere to go. So, I have to pray this is going to take care of most of the problems, because I just don't have the money to completely replace the ductwork, and can't replace the a/c again (just replaced it last year.)
OK so funds are limited. Then you need to prioritize. What is you biggest problem the carpet or the HVAC? Now you say every time you turn on the HVAC the place smells moldy (VOCs). That suggests the HVAC is the source of your problem. The carpets: are they growing mold? Not unless they have been wet for a period of time. So the only thing the carpets represent is that they have some mold that has settle out from the indoor environment. So you are going to spend $1400 on a negative containment system to take out the non moldy carpets when you can simply cover the carpet, cut it out, roll it out undisturbed and save $1000 of that $1400. Set up your portable HEPA systems where they are taking up the carpets and or put a few window fans in and draw lots of air across the area while they are doing this. Why does the carpet guy want to "treat" the subfloor and what is he going to treat it with? If the subfloor has had mold growing on it then it needs to be removed and if it is that sick then you need negative containment. But if there is no water damage then do not waste precious funds on a healthy floor. Either wash it down with soapy water and or HEPA vacuum. I am a big lover of HEPA because you can vacuum soft surfaces as well as hard surfaces. Meantime back to the beast: your A/C unit. It is possible your coil in the air handler was installed incorrectly and the water is not draining off the base of the coil unit. If you have a constant source of water in the unit then that is a place for mold to grow hence your constant complaint of smelling musty (VOCs!!!!) when A/C unit is on. So take the grand you save on the carpets and put it towards cleaning the air handler coils and air handler containment box which the duct work guys cannot touch with their fancy brush system (also known as BS). Make sure you have the highest MERV rating filter you can find for the HVAC unit. Have you ever checked indoor humidity levels? If your A/C is too large for your house it will cycle on and off too often and never get your humidity levels at or below 50%. This is a common design flaw when A/C people set up a system. THink about it and think about the biggest most important problem in your house and the limited funds. Heck maybe you do not even need to touch the carpets right now..... just vacuum often and keep pulling out whatever spores have settled into and go after the monster. Meantime the bathroom jerk owes you some big bucks big time. Unless you want to hear stories I will not go into it but i had 2 very badly done duct work cleanings. Absolute nightmare. In fact at every turn in my mold remediation I had to be on top of these jerks because none of them knew how to do a complete job. As for your "lyme flare ups" one does not need Lyme to flare from mold. Mold produces plenty of inflammatory cytokines all on its own. You may have Lyme but the mold is not flaring the Lyme it is just adding more poison to the process. Shoemaker's work has proven that mold can be as bad or worse than Lyme depending on how sick the building is. My house was plenty sick and when I took mold hits the symptoms went through the
roof. And then when the Lyme docs were feeding me antibiotics it only made everything worse. For 2 1/2 years I was told by different so called LLMDs that I was herxing. Of course "it was mold stupid" and they were only making me worse. Lots of clueless people out there from LLMDs to mold remediators to A/C jerks and plumbers who take apart moldy sick bathrooms and do not bag the contaminated products much less seal the bathroom. Just think if all he did was seal the bathroom and turn on the exhaust fan and cover the HVAC vent he would have had a sealed negative system. And then all he has to do is bag everything and vacuum when his is done and at least he gets most of it. But instead he dumps who knows how much into your whole house.
Red
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What an awful disease!!!!!!!! I do think the tremors could be related. The GSE seems the likely source and would stop completely until you talk with LLMD on Monday. Hopefully things will settle in the same amount of time since starting... 72 hours. GSE is a cyst buster too and maybe why you are seeing such a immediate and huge response.
As for constipation. Have you treated for parasites? We had this issue with younger DS and has resolved since using digestive enzymes and treating heavily for parasites. I posted an interesting video regarding Autism and parasites and the use of MMS recently. I am not endorsing the use of MMS as it is not FDA approved. However their perspective is interesting on potential number of parasites involved in ASD causing inflammation in the intestinal track, constipation and GI issues. It might be worth watching video... I am reposting link for you. We've treated parasites with Alinia (at least six months) and MSM 'natural sulphur' which treats nematodes. It might be worth a shot treating for parasites or at least discussing with LLMD since you've had so many GI issues. As an antibiotic Alinia provide a lot of cross over treatment for other TBI infections and viruses. Our LLMD uses it frequently.
Here is the link.
I can't get the link to work. Says the content is not online.
I read an earlier post you had about the MMS and found it quite intriquing. Did you test younger DS for the parasites or did you just treat? We are headed to Cincinnati in a couple of weeks for the quarterly GI appt and I am planning on asking a lot of questions about parasites this go around.
Speaking of parasites I think this is a good read.
Pig parasite may help treat autoimmune disorders
http://www.reuters.com/article/2012/08/24/us-usa-health-parasites-idUKBRE87N0UW20120824
Red
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Wow...great suggestions. I am getting the air tested by a professional that I picked out (insurance is paying for it, because I told them that I didn't think that the job had been done correctly by the company they called out to remediate. Our guy was blown away that they had left the aluminum foil covering taped to the a/c duct that dh had put there before they came in (after the mess was first made.) He said that they should have put on a thick plastic and sealed it properly. As a result, when the a/c was blowing, the whole thing was lifting off the vent, and of course, everything they were doing in the bathroom that was supposed to be kept at negative air pressure, was getting sucked right back into the house.
Of course that company was trying to claim that the mold wasn't anything that bad, and that it was "nothing compared to other jobs we do." When I told them I could care less about other jobs, and that I had told them and the insurance company very clearly that we had immune deficiencies and were very sick from it, he still tried to get out of it all. He also told me that they didn't retest the air, because they only do that on rooms that are bigger than 25 sf, and I pointed out that our bathroom was 25 sf, and again, that should have nothing to do with it.
Unfortunately, the insurance company is only limited to $2500 in total cost per incident, and I have to wonder what is going to happen when we are able to prove that they caused an even greater problem by not sealing the area properly. The insurance adjustor said that she would send out one of her people, and I told her I wanted someone that I chose. We are now waiting until Tuesday or Wed. for the results.
We have 1 area of carpeting (on the stairs and upstairs hallway, and will have to pull all the spindles out of the banister in order to put down new carpeting. But, I have the carpeting guys coming out on Monday to give me a quote. My hope is to get the carpeting replaced on Thursday, and then get the air ducts etc. cleaned on Friday. I will take my DS out of town to my h.s. reunion (and he can visit with his grandmother), and DH can stay in a hotel or something (he can supervise the guys.) Our mold guy can put up protective sheeting and negative air surrounding the stairs. If the air comes back high, I'm going to fight insurance that they GUARANTEE the work of their guys, and despite the fact that they are limited to $2500, their mold guys made things worse.
This whole thing just sucks...we were finally starting to really get better.
Luckily, DS19 is now out of the house...we just dropped him off at college, and I'm praying that he doesn't have any problems with his room (it smelled good to me.) Even the dog was having problems.
We are starting go calm down a little with the breathing, and such, but that has involved keeping the a/c off much of the day with the windows open, and only using it at night.
DO NOT put down new carpet until the air ducts are cleaned!!!!! You are doing it backwards. If you get contaminated air from the duct cleaning then that will just settle out onto that nice new carpet. What about the air handler? That absolutely has to be cleaned otherwise the air handler, which is full of whatever is in the duct work now will just re-contaminate the newly cleaned duct work (not to mention that I believe it is not possible to completely clean duct work). After the duct work is done I say you HEPA vacuum the house multiple times. You cannot vacuum the house enough. If your old carpet is gone then you are vacuuming a nice and easy hard plywood subfloor. Depending on where you live cooler air is just around the corner. If you could postpone the duct work until you do not need the A/C then do so. Keep vacuuming and then when the season changes get clean the ducts (air handler too!!!) and then keep the system off. Let the house settle down and vacuum your way through the next few weeks. Just clean like you have gone mad. Then put in the carpets and use your HVAC system later. If you do not have a HEPA vacuum them go to your big box store and buy a shop vac with a HEPA filter. My shop vac has a reusable washable HEPA filter in it. This is a relatively cheap way to HEPA vacuum your house.
As for mold testing, air samples are very inferior to testing surfaces. The tendency for mold is to fall out of the air and settle on horizontal surfaces. Stachy is a very heavy spore and is almost never found in air samples. Go to this website http://www.mycometrics.com/ and find out how to do sampling the right way. These people have been in the ERMI business since ERMI was first developed. Slow down...... you are going to fast. There is a method to the madness of preventing cross contamination. You have already suffered as a result from shoddy handling of moldy deconstruction. The excuses by the guy who screwed up the bathroom are inexcusable. As for carpet removal it should be done slowly and carefully so as not to disturb mold spores. I would cover the carpet with a thin sheet of plastic and then have it very slowly and carefully rolled up.
Do NOT think about spraying water directly on the carpet before rolling it up. That might be fine if you were trying to contain just dirt and dust but mold spores are HYDROPHOBIC and when water hits them in an open area they are repelled by the water and go air borne. It is just one of their ways of breaking loose and repopulating a different area. THink about mold in its natural environment. THe spore is the reproductive part of the fungus. It wants to distribute those spores far and wide. If a rain storm comes along and all the spores fall just around the ground repopulation is limited to the immediate area where there is too limited substrate(food). So treat carpets as if they are contaminated!!
Red
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She woke up yesterday with a tremor in her right hand and her left hand felt weak and numb. She was also complaining of heel pain and a tummy ache. Heel pain, tremor and weakness are all new symptoms (her brother and myself do have Bart). I emailed her LLMD and got no response and their office is closed today.
The tremor was quite pronounced. I gave her an Epsom Salt bath and it stopped the tremor for a few hours. I took her to school this morning and within an hour she was in the Nurse's office with the tremor back and worse than yesterday. Brought her home and gave her another bath. The tremor was better but still there.
So I don't know if this is a herx or a new symptom. On Saturday she had three drops of GSE (down from her normal 5 due to school starting). On Sunday she had a weird episode where she was kicking her feet, rocking, clutching her pants, crying, and repeating "I need help. I can't stop." Took us about 30 minutes to calm her down and for the motions to stop. Emailed LLMD on Monday and all he suggested was drop GSE down to 1 drop for awhile.
Now this happened yesterday and today. The only other change we have made is to add the Mag Cream at bedtime. I rub a small amount on her back and her feet. I can see it causing the heel pain since it has been directly applied to her feet but the tremors? Also, she has been taking Milk of Magnesium for the last couple of years without any issues. Epsom salt baths aren't a problem either.
So I don't know if I should take her to the ER and insist they do a MRI or ride it out until Monday and see what she is like. Any thoughts, opinions, suggestions would be greatly appreciated.
Bart is pretty complicated/complex. It can cause a whole host of symptoms. I assume she is taking a wide range of probiotics and I assume she is on antibiotics? But an MRI? MRI would be looking for some physical abnormality vs. a neurological disease like bart. As for her heels hurting my bet would be on the bart causing the pain and not the mag cream. What is the purpose of the mag cream? Staying well hydrated and maybe even adding small amount of supplemental electrolytes might be helpful. Mag is one of the most important supplements we can take as it is necessary for hundreds of biochemical processes in the body. As for her kicking her feet, rocking, clutching her pants etc I think it is obvious she is highly inflamed: whether it is herx or not if she is on antibiotics she needs a break. I have tried to push myself through to many herxs/inflammatory episodes and the only outcome is to make it worse. I am a big believer in taking myself to the breaking point and backing up from there to where it is tolerable. If need be then a holiday from meds is in order. Anything more than that stresses the body beyond our mental capacity to cope and our physiological capacity to heal.
Red
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My personal experience with mold (and an entire family suffering from mold illness) is that if your family is reacting to "cleaning" and "construction" in your house, that you are all very well "primed" as I like to put it. The air handler is only making the problem in your house worse and I would suggest you take steps to shut it down and install new "local" window units to improve your health. I do this in the summer and have used space heaters in the winter for three years because we all become extremely ill when the air handler is on---our immune systems are just too sensitive. It has been our saving grace as all of my children and my husband are healthier now than we have been in many years. I think air handlers and the duct work may be able to be cleaned, but it is usually only a temporary solution. Air handlers are the most efficient way to spread biotoxins throughout your entire house. So, even if the units are cleaned, you may have a serious mold problem in the bathroom and that toxic air will be distributed throughout your entire house through the ductwork and cause the problem all over again. Use the money you would have spent on cleaning the ducts to buy local cooling/heating units. Then, if your family begins to feel better, you will be able to start pinpointing where the problems are in your house. For example, once I had days where I felt good, I would react everytime I went into our bathroom. Leading us to find that we had a problem with mold in the bathroom. For what it is all worth! Good luck.
Very interesting idea. I will discuss this with dh in the morning. And, the mold from our bathroom was sucked throughout the entire house after the handiman had removed all the moldy flooring and cabinets improperly. Now, we are fighting all of that. We were not having such severe problems until this just happened, which is why I am still hopeful that we can resolve the problem. But, the local units may not be a bad idea at all. Personally, I would like to just move, but it's a huge hassle, plus our house is currently worth considerably less than we paid for it.
I have actually been shutting down the a/c off and on the past few days (during the day, and leaving the windows open.) The house actually has a nice, sweet smell, but it's terribly hot at night, and DS19 went a bit crazy this evening, so I turned it back on. Even the basement smell went away, but then came back the other night after running the a/c for another 24 hours.
Well I just got my computer back so here I am. I have been through this big time with 3 different mold remediation people. For those of you in the nothern Va/DC area I would highly recommend Greg Weatherman @ http://www.aerobiological.com/ I actually brought him down NC to diagnose my house. He taught me a great deal about remediation.
As for detox Shoemaker uses cholestyramine and it is the best product available hands down. Mold is fat soluble and loves the brain (hence our crazy reactions to exposure). I works by binding to the cholesterol in the liver and mold is floating around in the cholesterol and so the mold and cholesterol go out as a pair. I herxed from it for 2 weeks I had so much mold in me.
That your smell goes away when you shut down the A/C unit is very telling. I would think your 1 year old A/C unit/air handler is maybe a big problem.
As for your house I think you have had a significant breach and you now have spores everywhere due to the extremely poor deconstruction of your bathroom. We literally threw everything way that could not be washed in a washing machine. Dry cleaning does not take out mold. Then for the furniture we recovered including new foam 2 couches we wanted to keep. Anything wood can be washed down with soapy water and or use swiffers on them. As for the air handler it can be taken outside (that means new freon when they put it back) and can be power washed to remove all spores. As for the duct work they need to treat it like they would if it was contaminated with asbestos. If they do not know how to treat asbestos then they do not know how to work with mold. Asbestos is a much larger particle than mold and easier to contain. If you have carpet then, the spores are in your carpet and the only true way to get it out is through the carpet out IF THE PROBLEM IS AS BAD AS YOU MAKE IT SOUND. You may need an ERMI? We threw away our whole library. We took everything out of the house, had the remediation and then fogged the house multiple times with Sporicidin. http://www.sporicidin.com/ Sporicidin is non toxic and kills all mold on contact. As a fog it will kill the spores and the spores break up and fall onto horizontal surfaces. You then just swiffer up the surfaces. Remember even dead spores are toxic. The house will smell like phenol for a week or two. We then cleaned washed all clothing etc. outside and brought it into the clean house. We had the couches redone and bought new mattresses and futon pads. You have to realize that spores can make their way into foam bedding etc. and when you sit on the foam the spores come out and you breath them in. So CROSS CONTAMINATION is the name of the game. If you leave mold behind somewhere the spores will find their way back into the environment. As you can see we went to great lengths to get our 40 your old house clean. I do not know if I missed anything but that is a good shot at it. Any room that has mold in the walls should be sealed off and all material should be bagged before removing it from the house. Our house had been moldy for years and so we had to treat everything like it was contaminated which it probably was.
Both my wife and I had HLA subtypes making us susceptible to mold: different HLA markers but non the less markers that popped up on Shoemaker's list. When he test our Hypothalamic pituitary axis function/hormones we both had identical suppression on our brain hormones!
I think someone made reference in a post to TGF-beta being very high. Dr. Shoemaker is using vaso intestinal peptide spray to bring down TGF-b. It worked wonders on my wife and I also tired it. It brought both our TGF-beta down to normal. I had trouble tolerating VIP in the long run but now I know why. We did not know that I had bartonella when I tried the VIP spray. Whereas the VIP brought down my TGF-b it also aggravated my bart.
As for the person who posted about taking out their contaminated fiberglass I would hope everything was bagged and sealed. Then the area should have been at a minimum vacuumed. I also hope they put formaldehyde free fiberglass otherwise you got standard fiberglass which will unfortunately off gas.
As for the person putting in window A/C units and individual space heater units I think you are fooling yourself that you are doing anything healthy. If your house has mold you have to remove it plain and simple. Spores are extremely light and just walking through the house will cause them to move. Each individual A/C is basically a portable air handler. If you put HEPA filtration in your whole house air handler as well as cleaning and new duct work you will keep the house clean. I have a MERV 16 filtration unit in my whole house HVAC system. MERV 16 is equal to HEPA. It is just different terminology.
Different molds grow under different circumstances. For example aspergillus needs moisture content in the air in the 60% or above range and it usually is found on the wood surfaces of subfloors in basements and crawl spaces: hence the use of sealed crawl spaces and local dehumidifiers to keep those areas at or less than 50%. Then their is the dreaded stachybotrys we all hear about growing in the paper covering on sheet rock. Stachy requires direct contact with water at 70% to grow on the paper in sheet rock. Stachy also grows on fiber board which is used a lot in cabinets. So bathrooms with leaking water is a prime area for stachy. When we put in new sheet rock we used the kind that has a fiberglass covering that does not grow mold even if it gets soaked (now do not mistake that for mold that grows on the paint on top of that sheet rock).
Red
Anyone take a break from probiotics and just do antifungal?
in PANS / PANDAS (Lyme included)
Posted
For more information on garlic see http://www.allicin.com/
Red