Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 I need to hear from someone here who has recovered or is truly recovering from mycotoxin exposure/Environmental Illness who was on disability as their only income and only had Medicare. Or someone who has/had that level of support or lower and found a doctor who could lead and monitor them to recovery. I realize this may seem like a naive request for some of you but I'm not a newbie, been part of this group for awhile-my brain has just not been clear enough to know the right questions for me to ask. I have been ill with SOMETHING since I was 6, and now 40, I'm pretty sure it has compounded. Just got a blood mold panel done that showd very high antibodies to many molds, especially aspergillus. (Because I was sick and had no income because of it, I lived in a converted garage for 2 years that had black mold. When I was able I moved and now live in a home that is new and nonmoldy). I had 2 consecutive 24 hour urine tests done also that showed high levels of heavy metals, especially thallium, which is very rare apparently and reason enough to seek a specialist to get more tests. (Btw, my doc said the high antibodies mean I was once exposed or am being exposed now or if I am not, the spores are in my body. How do I find that out? what kind of doc do I go to that does that testing? And who will take Medicare or doesn't cost an arm and a leg!) Ay there's the rub! My doc sent me on a search for a toxicologist at UC , because of their school of Environmental Medicine for a toxicologist who knows about and treats heavy metal poisoning and mycotoxin exposure. I have not been able to get one referral, not even for one of the conditions. They don't know. I then went all over the UC system-Berkeley, UCSF, Sacramento, and even dipped my toe in Stanford. Some of the best schools in the country. Nothing so far. Meanwhile the symptoms I had for years are worsening. My hair is falling out-a symptom of mold toxicity and thallium excess both, my research found, I can't think, I'm exhusted, depressed, eyesight is getting weird and more. I feel like I'm dying and this is ridiculous. I realize the denial about EI is deep but SOMEBODY on tthis site must know a doc or know someone that knows a doc that effectively treats these conditions and takes Medicare or is affordable. I know many of you are in the same boat-Shoemaker is expensive!!! Klinghardt is expensive and the supplements alone will buy you a new home!! We can't just die here!!! Please anyone within earshot of this group, if you can ask people, if you already haven't, if they know of an effective doc who treats these conditions and takes Medicare or is lower-income affordable, please answer. I realize may be preaching to the choir here and you all are frustrated and may have exhausted all leads yourselves but if there's a change that maybe one little rock hasn't been overturned, I'm putting it out there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2010 Report Share Posted April 19, 2010 Have you tried Saw Palmetto for the hair loss? Do a little web research, it is used for prostate enlargement and hair loss, in the naturopathic domain. I had hair falling out all over my enviroment, house, car, everywhere! I, too, was sickened by aspergillus fumigatus and it is a very poor quality of life especially when you have been recently exposed....I believe that if you let your body rest, then you can get some of your life back, but maybe without the normal vigor of your previous existence. Feel better and good luck. --- In , Michal <michalvictoria@...> wrote: > > I need to hear from someone here who has recovered or is truly recovering from mycotoxin exposure/Environmental Illness who was on disability as their only income and only had Medicare. Or someone who has/had that level of support or lower and found a doctor who could lead and monitor them to recovery. > > I realize this may seem like a naive request for some of you but I'm not a newbie, been part of this group for awhile-my brain has just not been clear enough to know the right questions for me to ask. I have been ill with SOMETHING since I was 6, and now 40, I'm p Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2010 Report Share Posted April 19, 2010 sorry, from my experience, haveing this illness to the extent of haveing to be on disability, and depending on medicare and medicaid just seems to make it even hardier to get proper medical help. I think there is pretty much a non-spoken but known, " dont do any testing that you absolutly dont need to " " dont diagnose anything you dont have a absolete need to " " and if it comes to prescriptions, allways fill with generic, unless there is a intolerance or allergy to the generic kind and it just absolutly cant be done " . I guess it's not so much that the poor or disabled have worse health because they have no money, but because medicare and medicaid have no money. I guess we are not supposed to get into politics here, I just have to say that I've seen personally that we dont do a very good job of takeing care of our old,poor,sick. I guess if it's not something that well make news, it's just not important. --- In , Michal <michalvictoria@...> wrote: > > I need to hear from someone here who has recovered or is truly recovering from mycotoxin exposure/Environmental Illness who was on disability as their only income and only had Medicare. Or someone who has/had that level of support or lower and found a doctor who could lead and monitor them to recovery. > > I realize this may seem like a naive request for some of you but I'm not a newbie, been part of this group for awhile-my brain has just not been clear enough to know the right questions for me to ask. I have been ill with SOMETHING since I was 6, and now 40, I'm pretty sure it has compounded. > > Just got a blood mold panel done that showd very high antibodies to many molds, especially aspergillus. (Because I was sick and had no income because of it, I lived in a converted garage for 2 years that had black mold. When I was able I moved and now live in a home that is new and nonmoldy). I had 2 consecutive 24 hour urine tests done also that showed high levels of heavy metals, especially thallium, which is very rare apparently and reason enough to seek a specialist to get more tests. (Btw, my doc said the high antibodies mean I was once exposed or am being exposed now or if I am not, the spores are in my body. How do I find that out? what kind of doc do I go to that does that testing? And who will take Medicare or doesn't cost an arm and a leg!) > > Ay there's the rub! My doc sent me on a search for a toxicologist at UC , because of their school of Environmental Medicine for a toxicologist who knows about and treats heavy metal poisoning and mycotoxin exposure. I have not been able to get one referral, not even for one of the conditions. They don't know. I then went all over the UC system-Berkeley, UCSF, Sacramento, and even dipped my toe in Stanford. Some of the best schools in the country. Nothing so far. > > Meanwhile the symptoms I had for years are worsening. My hair is falling out-a symptom of mold toxicity and thallium excess both, my research found, I can't think, I'm exhusted, depressed, eyesight is getting weird and more. I feel like I'm dying and this is ridiculous. I realize the denial about EI is deep but SOMEBODY on tthis site must know a doc or know someone that knows a doc that effectively treats these conditions and takes Medicare or is affordable. > > I know many of you are in the same boat-Shoemaker is expensive!!! Klinghardt is expensive and the supplements alone will buy you a new home!! We can't just die here!!! Please anyone within earshot of this group, if you can ask people, if you already haven't, if they know of an effective doc who treats these conditions and takes Medicare or is lower-income affordable, please answer. > > I realize may be preaching to the choir here and you all are frustrated and may have exhausted all leads yourselves but if there's a change that maybe one little rock hasn't been overturned, I'm putting it out there. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 It's a good attitude that you're not going to take this lying now ! I lived in my truck for 5 years & spent winter of 08 starving & freezing... so I could get genetic testing on my methylation cycle. You can read about the methyl cycle here: http://heartfixer.com/AMRI-Nutrigenomics.htm I had the testing done by this place: http://www.holisticheal.com/health-tests/nutrigenomic-testing It came complete with suggested supplement protocol. It was $625 & then I take supplements to offset my defects. I went to the site to find you the link & I see it's " on sale " now for $495. I have MCS (disabling since 2002)- not sure if it's from pesticdes or mold. Managed to slowly get better over the years through avoidance (living in the woods) & finding the right supplement for every problem. Working with my methyl cycle test results have produced the best results yet. Not cured but better resistance. Been meaning to spread the word for some time but things have been real rough with my living situation. The methyl cycle defects cause poor resistance to metals and infections, Autism, brain fog, thyroid, hormone, neurotransmitter & liver dysfunction to name a few. There are foods and supplements to avoid & major deficiencies in some vitamins etc for some of the defects. A friend of mine with MCS (but with a brain for managing the " system " ) gets extra $ from HUD to cover medical necessities. She said you have to search their site for the right article to show the local office because they don't know themselves what they provide! I've been lucky to find a physicians assistant covered by Medical that HEARD of MCS...just so I have someone to take minor tests (that I have researched myself) & back me up with SSI you know. But mostly I've relied on myself to figure out what to do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 I'm so sorry for your suffering...and really, I know that you're suffering. I wish I had a great answer for you. I'm also on SSDI and have Medicaid. Unfortunately, I have not been able to find a Medicaid-accepting doctor who can specifically help with this. So...I see a non-Medicaid doctor and pay out of pocket. I have some family members who are helping me, and I'm lucky in that regard. Then...I try to get meds and as much as possible through the Medicaid doctors. So...I pay for the expertise/specialization of the non-participating doctor, but try to get as much covered as possible. Also, the doctor gives me a 20% discount. It's still expensive, but it does help. I wish I could be of more assistance, and if I think of something else (or learn of some other provider), I will let you know. --- In , Michal <michalvictoria@...> wrote: > > I need to hear from someone here who has recovered or is truly recovering from mycotoxin exposure/Environmental Illness who was on disability as their only income and only had Medicare. Or someone who has/had that level of support or lower and found a doctor who could lead and monitor them to recovery. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2010 Report Share Posted April 21, 2010 You NEVER recover from being chemically injured. You may abate the reactions, but, the damage is done. Angel [] Re: OK I've had it!! Help!! For me and all of us!! I'm so sorry for your suffering...and really, I know that you're suffering. I wish I had a great answer for you. I'm also on SSDI and have Medicaid. Unfortunately, I have not been able to find a Medicaid-accepting doctor who can specifically help with this. So...I see a non-Medicaid doctor and pay out of pocket. I have some family members who are helping me, and I'm lucky in that regard. Then...I try to get meds and as much as possible through the Medicaid doctors. So...I pay for the expertise/specialization of the non-participating doctor, but try to get as much covered as possible. Also, the doctor gives me a 20% discount. It's still expensive, but it does help. I wish I could be of more assistance, and if I think of something else (or learn of some other provider), I will let you know. --- In , Michal <michalvictoria@...> wrote: > > I need to hear from someone here who has recovered or is truly recovering from mycotoxin exposure/Environmental Illness who was on disability as their only income and only had Medicare. Or someone who has/had that level of support or lower and found a doctor who could lead and monitor them to recovery. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2010 Report Share Posted April 21, 2010 i hear differently, some patients at dr rea's clinic return to " normal " lives, not all, not the majority, but some do... sue > > You NEVER recover from being chemically injured. You may abate the >reactions, but, the damage is done. > >Angel > > > > > > > > > [] Re: OK I've had it!! Help!! For me and all >of us!! > > > > > >I'm so sorry for your suffering...and really, I know that you're >suffering. I wish I had a great answer for you. > >I'm also on SSDI and have Medicaid. Unfortunately, I have not been able >to find a Medicaid-accepting doctor who can specifically help with this. >So...I see a non-Medicaid doctor and pay out of pocket. I have some >family members who are helping me, and I'm lucky in that regard. >Then...I try to get meds and as much as possible through the Medicaid >doctors. So...I pay for the expertise/specialization of the non- >participating doctor, but try to get as much covered as possible. Also, >the doctor gives me a 20% discount. It's still expensive, but it does help. > >I wish I could be of more assistance, and if I think of something else >(or learn of some other provider), I will let you know. > > > > >> >> I need to hear from someone here who has recovered or is truly >recovering from mycotoxin exposure/Environmental Illness who was on >disability as their only income and only had Medicare. Or someone who >has/had that level of support or lower and found a doctor who could lead >and monitor them to recovery. >> > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2010 Report Share Posted April 21, 2010 I have to agree with you. From everything I have read and learned over the past 6 yrs. you can never fully recover. You can feel better with medication and out of the environment and some are even totally off medication but I don't know any. I know some that have stopped their meds only to relapse and end up pretty sick again. I have been out of my moldy environment since Jan. '04, still take CSM twice a day, I stay away from any moldy places that I know, use fragrance free products, stay at home a lot and away from people with perfumes/colognes, smoking, etc. I've been really well but don't have the energy I had yrs. ago and my short term memory is shot but not near as bad as I was. 6 years ago I honestly thought I was dying a slow death. You NEVER recover from being chemically injured. You may abate the reactions, but, the damage is done. Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2010 Report Share Posted April 21, 2010 I concur with in the fact you have to take control of your own health - no one else will. March 2008: I was told by a team of doctors in a suburban St. Louis area hospital that my husband's heart was so badly diseased that I was taking him home to die, one electro physiologist informed me he would be dead within days. What do you do ? I brought him home. To LIVE. On Saturday, March 29, 2008. I looked around and saw all the toxic chemicals around us - cleaners, detergents, yard chemicals and the supposed FOOD. I got out a large trash can and dumped anything and everything with the worst of the worst food chemicals and preservatives - especially artificial colors, artificial sweeteners, HFCS, BVO, anything bleached or overprocessed, etc. It's so much easier to grocery shop now since there's so much we will NEVER purchase again! I went to the produce stand nearly daily and bought very fresh produce - washed it well and made very wholesome meals for him. Small meals, periodically throughout the day. I learned about metabolic cardiology (dr. sinatra's books) and slowly ramped him up on the awesome foursome. BABY STEPS was key here. I didn't want to rock the boat, his life was in a very delicate balance. His left ventricle ejection fraction was poor - 15%. His energy level (ATP / chi) was to the point of a bed lifestyle - not enough energy to sit up in a chair. I devised a small exercise program around his abilities. BABY STEPS. Once he was strong enough to get to the treadmill, I allowed him to walk one one-hundredth of a mile (1 dot) at 1.0 mph with no incline. He could do more, but that's all I allowed him. I told him baby steps - NO ROCKING THE BOAT OF HIS HEALTH!! An hour later I allowed him to walk 2 dots - .02 miles or two hundredths of a mile, 1.0 mph, no incline. Later, after a light meal had digested, he walked 2 dots at 1.1 mph. Baby steps. Only changed one variable at a time. This routine continued the following days and weeks. 4 or 5 times a day, 6 if he really felt up to it and decided on his own to get to the treadmill. (Eventually as his duration of time increased on the treadmill he then slowly cut back the sessions to 4, then 3, then to just twice a day by the summer - since he had then returned to work FULL TIME in a very stressful job. His first day back at work included a helicopter ride to view a developing situation - talk about a stressful day the first day back on the job!) With just these changes above - just doing these first three steps of our attempt to keep him alive - just weeks later, the first week of May, he was able to walk 5 miles in a single day AND go shopping at a local super center that evening where we ran into his youngest brother and his wife who were also shopping. They visited with him in the store for awhile then stepped back, sized up his new appearance of vitality and exclaimed " I don't mean to put you down, but I haven't seen you look this good in THIRTY YEARS! " Wow. What a compliment! But we weren't through. We've adopted a whole new holistic lifestyle to remain as chemical free as much as possible. I began learning how to make our own cleaners and began tossing out the chemicals. Now my cleaners consist of WATER, vinegar, baking soda, vodka, vanilla beans (for scent, not necessary), and old citrus or the peels when I make our homemade lemonade (filtered water, fresh squeezed lemons, d-ribose). Window and surface cleaner is so easy - 5 parts water, 5 parts vinegar, 2 parts vodka. I looked around at our landscaping - and saw I could take a standard suburban American yard and turn it into a healthy oasis of nutrition. Today we now grow strawberries (evergreen!!) where we once had ground cover. My planter containers now grow herbs for our daily consumption. We now have blueberries where we had 3 yews. We have apple, lime, orange, chocolate, pepper and spearmints where we formerly had irises. We have elderberry where we had a dieing hosta (too much direct sun - now the hosta is thriving in the shade of the elderberry). We have blackberries along a fence. Nasturtiums in a bed that was just perennials. A mulberry tree in place of an old oak tree stump. A butternet in place where another tree died years ago. Weeks ago I planted a dwarf plumcot and an aprium tree where I thought the area too small for trees - they'll be the perfect size and remain well under the height of the overhead power service. Today, 25 months later, my husband is not only still alive, but returned to work full time and is now prescribed fewer drugs than at any point in recent decades. At 12 months into the recovery from when I was told I was taking him home to die, he then suffered a serious setback including partial paralysis (some sort of viral encephalitis from a tick bite he acquired after spending a day in Central Missouri on a horse farm), recovered enough to again return to work full time and is NOW again at home recovering from a hip fracture - he fell last week when getting out of bed to get the alarm clock getting ready for work. If he wasn't working full time, he wouldn't have gotten up at that hour.... so once again, I've brought my beloved husband home to help him heal. He's very thankful he's lived our holistic lifestyle these past 25 months. His healthy body has naturally lost so much weight that he's close to a normal healthy size - he's GRATEFUL not to have had all that excess weight anymore - he says there's no way he could deal with this current hip fracture had he not lost all that weight that happened as a side affect of living holistically. Long story, lots more details, but this is a start for ANYONE suffering from serious illnesses of affluence. Join us. holisticlife Jeri Zerr St. s, MO PS with the hip fracture, my husband successfully underwent general anesthesia which he is again detoxing from all the chemicals and germs common in a hospital environment. The key element here though - his heart was not only strong enough to endure the traumatic fall, but was strong enough to undergo surgery and strong enough to withstand the pain and trauma he is going through daily as part of his rehabilitation. He's only accepted pain pills THREE times in the past 8 days since his injury - including surgery - despite wandering around for a whole day on the fractured femur before finally getting admitted for the broken bone. He's learned that taking turmeric (anti-inflammatory), Wellesse (glucosamine, chondritin, MSM) and Arnica (both gel on the surgical leg and tablets under the tongue) has allowed him to remain free of the narcotics he was prescribed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2010 Report Share Posted April 21, 2010 The is a disgrace. The truth is medicaid is supposed to pay for the specialist you need even if they are not a medicaid provider. It is in there documentation. If your EI is the only person in the state who can treat you for mold iilness Medicaid is supposed to pay. You need to contact your State Medicaid office. Get a refferal from your primary care physician to the specialist. If your local medicaid is giving you a hard time like mine is then you get the autorization from your state office. Then then must pay for specialist and have you PCP state that you need to see him/her for as many visits as necessary. (undetermined amount of time) That is my plan of action. My local Medicaid told me they would look for an EI in another state who takes medicaid and then fly me there for treatment. (WHAT ??)  I asked if they would fly me 3 times a week???  How rediculous is that. They just want you to give up. So they do not have to pay.. Normally we do not know any better than the BS they tell us. I had to do this for a medication I needed. It took 2 weeks but I got it. Thanks to my Dr and someone else who enlightened me with some info. Do not give in.  If it is the only Dr  in the state who treats your condition , such as mine then they have to pay   God Bless !! dragonflymcs Mayleen ________________________________ From: stuff4stephanie <stuff4stephanie@...> Sent: Wed, April 21, 2010 12:08:50 AM Subject: [] Re: OK I've had it!! Help!! For me and all of us!!  I'm so sorry for your suffering... and really, I know that you're suffering. I wish I had a great answer for you. I'm also on SSDI and have Medicaid. Unfortunately, I have not been able to find a Medicaid-accepting doctor who can specifically help with this. So...I see a non-Medicaid doctor and pay out of pocket. I have some family members who are helping me, and I'm lucky in that regard. Then...I try to get meds and as much as possible through the Medicaid doctors. So...I pay for the expertise/specializ ation of the non-participating doctor, but try to get as much covered as possible. Also, the doctor gives me a 20% discount. It's still expensive, but it does help. I wish I could be of more assistance, and if I think of something else (or learn of some other provider), I will let you know. --- In , Michal <michalvictoria@ ...> wrote: > > I need to hear from someone here who has recovered or is truly recovering from mycotoxin exposure/Environmen tal Illness who was on disability as their only income and only had Medicare. Or someone who has/had that level of support or lower and found a doctor who could lead and monitor them to recovery. >  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2010 Report Share Posted April 21, 2010 Does this apply to those who suffered from short term exposure and started medication almost immediately after their exposure? > > > I have to agree with you. From everything I have read and learned over the > past 6 yrs. you can never fully recover. You can feel better with > medication and out of the environment and some are even totally off medication but I > don't know any. I know some that have stopped their meds only to relapse > and end up pretty sick again. I have been out of my moldy environment since > Jan. '04, still take CSM twice a day, I stay away from any moldy places > that I know, use fragrance free products, stay at home a lot and away from > people with perfumes/colognes, smoking, etc. I've been really well but don't > have the energy I had yrs. ago and my short term memory is shot but not near > as bad as I was. 6 years ago I honestly thought I was dying a slow death. > > > You NEVER recover from being chemically injured. You may abate the > reactions, but, the damage is done. > > Angel > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2010 Report Share Posted April 22, 2010 Jeri: What a wonderful story, brought tears to my eyes. That is what all of us need, someone who refuses to give up of us. Love is more healing than anything. Your husband is very lucky to have you in his life... > > I concur with in the fact you have to take control of your own health > - no one else will. > > March 2008: I was told by a team of doctors in a suburban St. Louis area > hospital that my husband's heart was so badly diseased that I was taking him > home to die, one electro physiologist informed me he would be dead within > days. > > What do you do ? > > I brought him home. To LIVE. On Saturday, March 29, 2008. > > I looked around and saw all the toxic chemicals around us - cleaners, > detergents, yard chemicals and the supposed FOOD. I got out a large trash > can and dumped anything and everything with the worst of the worst food > chemicals and preservatives - especially artificial colors, artificial > sweeteners, HFCS, BVO, anything bleached or overprocessed, etc. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2010 Report Share Posted April 22, 2010 I dealt with Medicare with my mom and dad and my private insurance, blue cross/blue shield and my experience was that medicare covered about the same, maybe more in some cases. I don't know anything about Medicaid. When I was in Dallas at Dr Rae's, person handling my bills said 'too bad I wasn't on " medi- (caid/care...don't remember which), because she said they covered everything, or at least more than my private insurance was and I have high premium or the best choice they had..high premium plan so I can go to who I want, have been pleased with my coverage, although I wish they would cover alternative treatments. I don't know any insurance they covers alternatives. I did hear that Medicare/Medicaid? covers some experimental treatments for cancer/AID. I doubt my private insurance would. > > The is a disgrace. The truth is medicaid is supposed to pay for the specialist you need even if they are not a medicaid provider. It is in there documentation. If your EI is the only person in the state who can treat you for mold iilness Medicaid is supposed to pay. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 Medicare is what you get when you retire. Covers most EI Dr's. Medicaid is what you get when you are in poverty or disabled on SS but not of reirement age (maybe income required also) . You get disability from SS then there is 2 year wait period if you are not of retirement age you get medicaid until the 2 years wait period is over. Hardly any Doctor's want medicaid cause it does not pay enough. There are several reasons why you get medicaid. Like if you have children and are income qualified. Which is now about $     80, 000 or so.  You can be temporarly disabled like getting treatment for cancer and qualify. You can also have medicaid and medicare with income qualification after the 2 year period. It all depends.  God Bless !! dragonflymcs Mayleen ________________________________ From: barb b w <barb1283@...> Sent: Thu, April 22, 2010 8:22:02 PM Subject: [] Re: OK I've had it!! Help!! For me and all of us!!  I dealt with Medicare with my mom and dad and my private insurance, blue cross/blue shield and my experience was that medicare covered about the same, maybe more in some cases. I don't know anything about Medicaid. When I was in Dallas at Dr Rae's, person handling my bills said 'too bad I wasn't on " medi- (caid/care.. .don't remember which), because she said they covered everything, or at least more than my private insurance was and I have high premium or the best choice they had..high premium plan so I can go to who I want, have been pleased with my coverage, although I wish they would cover alternative treatments. I don't know any insurance they covers alternatives. I did hear that Medicare/Medicaid? covers some experimental treatments for cancer/AID. I doubt my private insurance would. > > The is a disgrace. The truth is medicaid is supposed to pay for the specialist you need even if they are not a medicaid provider. It is in there documentation. If your EI is the only person in the state who can treat you for mold iilness Medicaid is supposed to pay. Quote Link to comment Share on other sites More sharing options...
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