I'm not sure how much it helps to know that other LLMDs charge more.
For some of us, having the money available to finance this expenditure is an extreme issue. Especially if there is loss of income and or multiple family members to treat.
This is also about SHOCK and the emotional effects of not only having a "cure unknown" with the "virulent, stealthy" bacterias but also having to deal emotionally with the loss of control and watching not only retirement, college reserves for kids, but daily finances as in having money left to buy food and pay rent continually slip through your fingers as if it is water and again, you have no control.. you are basically at the mercy of this doctor or that one to heal you and each one is a gamble and it is not fun. It can feel like a dangerous game you are unwillingly playing.
So if someone starts the thread in a way that puts a doctor on the spot, I think we can forgive that and we can stand with the person who may be in SHOCK (I go in and out of it) and the doctor at the same time.
Some of us talk about emotions and emotional blockages and how they effect healing or not healing.. thats something to think about. This illness and the political climate alone can create more TRAUMA. Even going to a caring doctor who charges more money than you can afford to pay can cause trauma.
When I have emotional herxes.. this is what puts me under the table every time. To top it off, yes the SHOCK and FEAR of having to put the money out with no sense of security that (1) I am being treated fairly (2) This doctor can be successful. (3) This doctor cares about me and will not let me fall through the cracks (4) I am getting what I pay for
Posts: 861 | From USA | Registered: Dec 2008
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posted
This has no air of a witch hunt. It is unhealthy for people not to be able to process their thoughts and feelings. No one on this thread is out to get anyone. To call this a witchhunt, creates more drama than has to be here.
I also do not see attempts to tear this person down.
So if people had been more supportive to begin with and less defensive, we might not have gotten to witch hunt status so quickly.
Someone could have said.. PM me and lets talk.. lets see how I can help.
I also have no clue who this person is.
Posts: 861 | From USA | Registered: Dec 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
This is not a witch hunt at all. It's all being interpreted incorrectly. I hope Lymenet evolves someday to a place where you don't just need to shut your mouth and be a good Lymie. We all have issues and deserve respect and consideraion in what may be bothering us about treatment, symptoms, etc.
I really don't think medical providers spend a lot or any time worrying about how we can't pay bills, support our family, keep our residence, etc.
I'm not badmouthing or attacking anyone personally at all. I'm stating the cold facts. Intimate provider details should most definitely be shared via PMs. However, you're all in support of RateMD and other open tools EXCEPT when it comes to the precious LLMDs because they are given immunity. It's all about perspective. Be responsible with the information, considerate of people's individual circumstances, and we'd all function better I believe!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
With all due respect, in my opinion, describing anything on this thread as a witch hunt is extremely disengenious, results in debate baiting (whether intended or not)and injects non-constructive drama; none of which are helpful. I hope it stops.
I am an extremly sick lyme and mold patient trying to get help and offer help to others. Nothing more; nothing less.
I am in the middle of a mold crisis with my home. I have now learned that mold may have very well be the root cause that deregulated my immune system and allowed lyme and viral antibodies (designed to protect me) to manifest into these diseases. Some of you may be in the same situation and not even know it, especially those with only a clinical diagnosis of lyme, but more on that in a following post.
I asked a very simple appropriate question to help me sort out my rather complicated situation. Thank you to those who have constuctively participated to help me sort through considerations.
Littlelymie19 asked me about my personal experiences with this practitioner. I honestly responded regarding my own experience, as did others. Clearly not everyone has had the same experience. However, I would say that would be the case with any practitioner, not just this one.
I have repeatedly said I hope my situation is a string of fluke things. I don't know how many more times I can say or emphasize that.
Seekhelp, thanks for enlightening us about the proces of labtest/practioner rate setting discretions. I had no idea, but that explains potentially what happened as to why I was charged $600 for a lab that CD57 had done through a different practitioner for $120. This discussion has been productive and uncovered an even bigger issue that I was totally unaware of.
Had I not asked a simple question about a 3 min reading charge I (and perhaps others) would have probably never learned about the more important larger issue with the lab test cost discretions that CD57 and Seekhelp have shed light on. Thank you.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
R62, please don't worry, a hijacking might be just the thing this thead needs! Mold is something several of us have been talking about, here and elsewhere.
Mold is a serious issue, especially specific strains known to be caused by water damage. However, certain molds, like the very dangerous stachybotrys black toxic mold, can live with just moisture from the air. It does not need a high content moisture source, and it is the most toxic mold with high health risk factors.
Aspergillus and Penicillium are among the high health risk factor molds, but they need a moisture source to live on (usually water damage).
It can be difficult to get clear and creditable information about mold. Like lyme disease, no 2 experts seem to say the same thing, the CDC guidelines are not what they need to be, and most family practice doctors are unaware and don't know how to diagnose mold sickness. Medical school covers about 2 hours on mold risks and health factors....sound familiar?
In otherwords our risks of getting mold sickness from our living and/or work environment are probably far greater than our risks of getting tick/critter bit.
The symptoms of lyme and mold sickness are basically the same. There could actually be people on this board, those with only clinical diagnosis of lyme disease, who may actually have undiagnosed mold sickness!
The only way to know is to first test your body to see if your body has developed antibodies in response mold exposure. The blood test is through the Esoterix mold test through LabCorp.
If you have high antibody reaction on the test, it validates you have had exposure to those specific species of mold. The lab test tells you exactly what molds, but of course is only testing against the strains of mold your doctor asks to be tested. There are thousands of strains of molds, not all are dangerous. So, you need a mold literate doctor to request the right tests.
Next, you need to determine WHERE the level of mold exposure is coming from. It could be your living environment, your workplace, your car (especially if you have long commute daily and your car is not garaged and is out in the elements where you could have some water intrusion). One key to look for is SMELL. Mold usually has a pungent smell. However, after a period of time mold can stop to smell.
In order to do an inital smell assessment, it is recommended that you stay away from your home for a few days and allow your nose to acclimate to an unexposed environment. When you return to your home with a "new nose" it will more easily detect any unusual oders that have previously become accustomed to and perhaps no longer even notice.
You also want to do a visual inspection of attic, crawl space, basement, all rooms, particularly any rooms with a water source (bathrooms and kitchen).
If you have a frost free freezer, you will want to inspect the drip pan under the refrigerator. We found quite a bit of mold in ours. At the time we didn't know better and immediately cleaned it. Now, I know that prior to cleaning it that we should have done a surface swab or tape lift test to have the mold tested to see what species of mold it was.
You also want to inspect your hot water heater area, see if there are any leaks. We had a slow leak where there were no visible signs of leakage without looking into the hot water closet. How many of us regularly inspect that area? You can protect against risks if you ensure there is "catch pan" under the hot water heater. Any hardware store sells them near the hot water heaters.
You will also want to inspect around your air conditioner, check the drain tube to ensure it isn't clogged. Mold remediators recommend that put bleach through it every 3-4 months. We never knew that.
There are a variety of ways to mold test your environmental exposures. The are pros and cons to each, costs vary greatly, and again no 2 experts agree and the government guidance standards are not what they need to be.
Consequently, the confusion causes people to just call in what they think is a professional mold remediator who sometimes is only a person who paid for $100 online course and was given a certificate of completion. With that and a $500 of equipment, "I are a mold remediator and am here to help you".
The horror stories across the country are frighening. People have refinanced their homes, entrusted remediation to an unqualified person who was basically clueless how to protect the home against cross contamination risks.
A botched remediation process can end up spreading the contamination throughout the entire household, rendering the property unlivable and unsellable. A homeowner's nightmare.
We started our mold education process with buying several books and DVDs written by doctors, mold remediators, and a mold remediation training course. For an additional $50 I could now get a certificate from Allstate Home Owner's Insurance saying I am a certified mold inspector. Who wouldn't trust that as being qualified, right? I do NOT consider myself to even being close to being a qualified mold inspector. But, I am a better educated consumer as a result. I will hopefully be able to better protect my family from harm that I was previously unaware existed.
If you suspect you might have a mold problem, I would advise that you NOT immediately contact your home insurance. Not until you educate yourself about the risk in doing so. The following is what we learned from a mold book written by a former insurance agent.
Insurance companies have had to pay out so much in mold claims over the last decade they now deny and litigate almost all claims.
The onslaught of mold claims has resulted in insurance companies developing exclusion addendums to home owner policies. For most, if you haven't purchased a separate mold rider coverage, insurance will be denied and have to be litigated. If you had water damage that wasn't repaired within 24-48 hrs. it will be litigated as homeowner contributory neglicence for not having done regular home inspection and repairs as needed. They have their whole defense system in place waiting for your mold claim to arrive, be denied, and then raise your rates.
Most importantly regarding insurance claims, you should know that very strict practices have been put in place where IF you have a mold claim, your insurance can be cancelled. With some companies even an inquiry call about mold can flag you as a potential a high risk homeowner. High risk homeowners, like high risk drivers, go into a insurance check data bank.
Insurance from thereon out, if you can get it, will be at a high risk premium.
What I have learned in my own situation and experience is that it is an issue where there has been substantial fear mongering in a very unregulated industry. And, how mold is viewed and handled can vary vastly different state to state.
For example, the doctor in Florida with whom hubby and I had a phone consultation yesterday, she recently moved to a large town in FLA a high humidity state. Mold thrives in humidity as it is a moisture source. She said the town (maybe the state?) requires that all lease agreements have an MOLD Awareness & Prevention Addendum. It is a basic help guide warning renters about the risks of mold and step by step what they can and should do as tennants to keep risks down.
All states where the humidity can get over 60%(high risk mold areas)should have such a requirement and guide to renters/homeowners. They don't.
It is up the public to take personal responsibility to know and manage your own family's risk factors. Don't wait on the government to do it for you. It will be too late. How many years have they known about lyme and not adopted proper standards or trained doctors? The lyme crisis has existed for about 3 decades. The mold crisis has existed for about 2 decade.
So, you have to be proactive and learn about it for yourself. Hopefully not in response to a personal crisis situation as my husband and I are having to go through right now.
The only state that I am aware that has an active public awareness campaign to make its residents mold literate is Florida.
Florida, and its residents, learned hard lessons through the succession of many devastating hurricanes. Horrors of mold stories resulted with water damaged homes. The next lesson learned was hey, even without hurricanes Fla residents are at risk because they learned that just the high moisture in the air, humidity, presents mold risks.
So, they developed a public campaign awareness with MOLD ADDENDUMs to leases. Here is the Florida Property Rental Lease Mold Addendum I found online:
Everyone could educate themselves by taking a minute to read through these documents. It is especially important if you live in a part of the country where the humidity factor reaches 60%; a higher risk area.
Each document is a couple of pages, easy bullet format to read. They basically give practical advise to ensure tenants are aware of what they can do to cut down on daily indoor mold risk factors. An ounce of prevention is worth a pound of cure.
I learned this from the doctor I spoke with yesterday, Dr. Mary Beth Short-Ray, who was thrilled Florida is so proactively advanced in this area of mold prevention.
Dr. Short-Ray recovered herself from mold sickness. She ultimately had to move out of her house due to mold issues. She spent thousands of dollars professionally remediating, and the problem kept coming back. She wrote the book, Surving Black Toxic Mold Symdrome, to help the public understand about mold risks and how to protect yourself against in an unregulated industry. She is still paying off debt for repairs in house she can't even live in.
She was terrified about looking for a new place to live where one does not know if there is a water damage history of the structure. Knowing that Florida has an active campaign about mold awareness helped her in making decisions about her new living environment.
I wonder how many among us have mold problems and may not even know about it?
What several doctors have told me is that if mold is a factor in your illness, it must be treated first, before lyme. I don't yet fully understand all of why that is, but 3 doctors have said it.
If I understand it correctly part of the reason is that an underlying mold problem will deregulate progress of lyme treatment. Perhaps treating both simultaneously might overload the detox system. That would be a particular risk factor for those who may have a methylation detox pathway block, which I do. Maybe those without the block could treat simultaneously? I don't know. Just posing questions for others to consider in trying to find the pieces of the puzzle to your illness.
Some LLMDs know about the mold factor risks; some don't.
There is just so much about all the nuances of chronic illness that it seems we have to know or learn for ourselves. Thank goodness for forums like this that gives us the ability to share information and learn from one another, hopefully in a constructive healing way.
[ 05-08-2009, 02:05 PM: Message edited by: jam338 ]
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Jam338, I completely agree with you about the health dangers that being exposed to toxic mold and mold mycotoxins can cause. Illnesses caused by indoor molds and mycotoxins are probably more common than people realize.
Exposure to toxic mold and mold mycotoxins can also come from your diet.
Poisons of the Past: Molds, Epidemics, and History by Professor Mary Kilbourne Matossian
posted
Thanks jam and emla for the great mold info.
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I tend to agree with Keebler. I think it is important to be very careful when discussing practioners in a public forum.
This sort of discussion can can have serious consequences for the patient and the practioner. If you have complaints, please, first discuss it with your practioner. If you get no resolution, then, if so inclined, register it with Metallic Blue.
Good mold info. I think it is a critical issue for some of us. Personally, I would like to see the mold discussion continued in a different thread and the discussion of the practioner go away.
Jam - have you asked Metallic Blue for any feedback that he may have?
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Emla999/Lyme, thanks for link on more mold information. I have read your other mold posts with great interest, especially now that I know this is a problem for me. You definitely have insights about the mold issue that we can all learn from. I have SO much to learn and am overwhelmed with it all. I have a question for you or anybody who can answer it.
Are mycotoxins and biotoxins the same thing? If not, how are they different? What do we need to know about that?
In dealing with the 3 different doctors I have heard both terms used. Does one related to mold and the other relate to lyme (I have both)...or are they synonymous and used interchangeably? Just trying to delineate the distinctions.
Dr. Short-Ray, the medical doctor in Florida that I spoke with on the phone, gave me a lot of good information. I haven't yet checked all this out, but wanted to go ahead and post the information since a few people have PM'd and emailed me asking that I please post more specifics about her treatment recommendations.
I think there is more on the tape from my phone consult with her, but here are a few notes of things I scribbled down. I was having a very difficult day so didn't write much as I knew I had the tape for review later.
Please understant that I have not yet researched any of these things so I can't answer questions about any of it yet.
Maybe others, if interested, can help research this list further and we can post and share information we learn to help each other.
Ok, here is my partial list:
-ERMI Dust Sample Testing $360
-Instant Mold Test Pen ($15)
-BENEFACT (thyme oil)(mold structural treatment)
-Structural Pasteurization Process (mold structural treatment) (baking house process at 140-200 degrees to kill mold)
-Modiflan (brown seaweed, exc. for detoxing and good option for those who can't tolerate CSM)
-PK Protocol @BodyBio.com
-Book: Biotoxin Illness
-She also gave me a website which I failed to write down but have the phone consult on tape so will check and post it later. She said to go to the website and locate a holistic allergist in my area. She said find someone who is environmental mold literate and inquire about their ability to give "neutralization provokation allergy shots". If I understood it correctly it is something that neutralizes the body's reaction to mold (probably over time, a succession of injections...just guessing). She said a few environmental doctors around the country are reporting really good results with it.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Jam338, thanks for the complement.Actually, I am relatively new to molds and mycotoxins as well.
Last fall a friend of mine was diagnosed as having toxic mold induced illness. So I began to look more closely at how toxic mold and mycotoxins could impact our health.
And what I found and learned was shocking to me. The symptom similarities between chronic Lyme Disease and chronic toxic mold and mycotoxin exposure was amazing. At least it was amazing to me.
That friend of mine is currently under the treatment a doctor in Arizona that specializes in treatment of toxic mold and mycotoxin exposure. And so far so good.
Now, to answer your question on the difference between biotoxins and mycotoxins.
Essentially, Biotoxins are a CLASS of toxins that includes a broad range of toxic substances.
Mycotoxins are a member of the Biotoxin family. So, Mycotoxins are classed as a Biotoxin.
Another example of a Biotoxin would be Phycotoxins from phytoplankton.
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