posted
Really would like someone to talk to in area . Arizona ""Live in West Valley the community is Verrado. My email is [email protected]
Hello, I'm new at this disease and lost and confused . So much I could say that I've been through over the past 5 years reaching this diagnosis.
I mostly need to talk to someone that's educated/familiar the more I read and search for a Dr the more depressed and defeated I feel. Any information on a LLMD Dr in this area or a support group would be beneficial and probably save $ as it seems that every avenue I turn the cost is $ 60,000-$80,000 this was through Envita.
I live 20 miles west of Phoenix in Buckeye. I have also been diagnosed with mold . The current path I'm on is being treated for mold with Cholestyramine powder .
Also awaiting mold results of my home .. Have completed intro visit to LLMD Dr in AZ** will follow up on January with the 11/2 hour visit for recommended treatment plan for Lymes" appears to be a treatment using supplements.
My Nature Path in Good Year" very good he is not Lymes but after 2 years he had me tested and it came back positive .He does not claim to know Lymes but do to the fact it seems to be knocking at his do
posted
Kelly64, welcome to Lymenet. Hopefully, you can get some support networking come your way because of this thread. In the mean time, feel free to ask questions here or vent.
This site has been very helpful to our family. There are so many people here who know a lot and share their experiences. I have a notebook and I write down their tips and have pulled them up when needed.
All the best to you on your healing journey!
Posts: 764 | From Northwest | Registered: Sep 2014
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hi, Kelly and welcome to Lymenet! We will help you all we can.
As you become familiar with LymeNet, you will see that we have different forums for different types of questions.
One forum is for Seeking a Doctor. Another is for Medical Questions. You have posted in the Activism forum which is for people who want to change the climate regarding lyme disease in this country.
Not too many people look in the Activism forum, so I will ask the moderators of LymeNet to move your post to a more appropriate forum for you. This way, more folks will see your post.
If you look on the left side of the page, you will see Support Groups. Click on that and select Arizona. This will give you the contact information for one or two lyme support groups in Arizona. Contact both of them and learn from them whatever you can.
Also, do not think that you will have to spend $60,000 or $80,000 to treat lyme disease. Also, Envita has been discussed here before. We rather suggest you go to a doctor who specializes just in lyme disease. In other words, his practice is 100% lyme patients. That is how a doctor gains expertise with this complex disease which is really a combination of diseases.
You should not have to spend that kind of money to get well from lyme.
When you say you have been diagnosed with mold, perhaps you mean that you have a mold allergy or toxicity or are living in a moldy environment. Often a moldy environment can set a person up for getting lyme disease. I believe that is what happened to me.
I suggest you look at the notes I took a few years ago when a doctor talked about the mold-lyme connection in a lyme conference. My notes are here:
This document is not an easy read because it was written for other doctors to teach them about lyme disease. But, it will give you a good education on the disease that you have.
It will also tell you exactly what good lyme disease treatment looks like.
To find what others have to say about Envita, use the LymeNet "Search" function. You'll see it at the top of the screen under "Post a Poll." This way, you can pull up all the old posts people have written about Envita or any other subject.
Plan on spending some time searching for a good lyme doctor. There is a learning curve to finding a good one. You can ask in Seeking a Doctor for a good one in your area. However, often in your area of the country, you have to be willing to travel to see someone good. Lyme doctors are few and far between. So, it is best if you are willing to travel.
For example, the doctor I recommend in Maryland requires his patients to come to the office in person once every 3 months. The other months he will do telephone or Skype appointments with you.
He sees patients from Canada, Florida, Texas, Ohio, New Mexico, upstate New York, etc. plus local people.
So, if your state doesn't have anybody good, this is how you can still get great lyme treatment.
Keep asking questions here and we will be happy to answer. Your story is a common one. I went undiagnosed for at least 10 years before a doctor thought to test me for lyme.
Still, I got rid of lyme (and babesiosis and bartonella) by going to a doctor who followed the Burrascano Guidelines. Then, over the years, I sent at least 5 of my friends to Burrascano type doctors and they also got well. This is why I believe in the Burrascano Guidelines.
Now that you have been diagnosed, you can start to make progress. We will all help you every step of the way.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Try lyme support groups in nearby states also. Try those in California that are not too far from you.
These folks should be able to tell you of good doctors in southern California. That would not be as far a trip for you.
I will send you the info on the Maryland doctor. But, I believe California has some good doctors, so that might be where you try to go first.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Welcome. There are many kind and wonderful people here. When I was first diagnosed I was scared and confused. I have been lovingly guided here.
How were you tested for mold?
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
HW88, she says above that one of the tests for mold was the visual test that is on the website survivingmold.com.
The doc who created that website and test is rather famous and well known in Maryland.
Posts: 9931 | From Maryland | Registered: Dec 2007
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
LLMDs are far and few between, unfortunately, so you need to go where they are. At least half of all Lyme patients go out-of-state to get proper treatment.
Scroll down to "AAEM Physician Referral" and click on your state. It will pull up a list for AZ of environmental specialists if you don't have one yet to treat your mold problem.
The top LLMD, Dr. H, has written a book entitled, "Why Can't I Get Better?". It is an excellent source of information.
Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
We correspond through Private Messages (PMs), because this is a public forum, so we don't send e-mails. You can delete your personal e-mail address from your post by following the above-mentioned instructions for breaking up your post.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
Sending you a private message to discuss CA doctors.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
It gets complicated when it's Lyme and mold. Unfortunately it seems very hard to find a doc who truly gets both of these on the type of level that we need. So you may need two doctors, or start with the mold doctor and then switch to Lyme. Or vice versa.
How much does your mold doc understand about Lyme?
As someone else mentioned, some tests just indicate biotoxins, not specific to mold or lyme, so I would request the full lab workup for mold which is listed on the survivingmold website. Especially important to know if you have the susceptible mold genes (HLA).
quote:Originally posted by TF: Hi, Kelly and welcome to Lymenet! We will help you all we can.
As you become familiar with LymeNet, you will see that we have different forums for different types of questions.
One forum is for Seeking a Doctor. Another is for Medical Questions. You have posted in the Activism forum which is for people who want to change the climate regarding lyme disease in this country.
Not too many people look in the Activism forum, so I will ask the moderators of LymeNet to move your post to a more appropriate forum for you. This way, more folks will see your post.
If you look on the left side of the page, you will see Support Groups. Click on that and select Arizona. This will give you the contact information for one or two lyme support groups in Arizona. Contact both of them and learn from them whatever you can.
Also, do not think that you will have to spend $60,000 or $80,000 to treat lyme disease. Also, Envita has been discussed here before. We rather suggest you go to a doctor who specializes just in lyme disease. In other words, his practice is 100% lyme patients. That is how a doctor gains expertise with this complex disease which is really a combination of diseases.
You should not have to spend that kind of money to get well from lyme.
When you say you have been diagnosed with mold, perhaps you mean that you have a mold allergy or toxicity or are living in a moldy environment. Often a moldy environment can set a person up for getting lyme disease. I believe that is what happened to me.
I suggest you look at the notes I took a few years ago when a doctor talked about the mold-lyme connection in a lyme conference. My notes are here:
This document is not an easy read because it was written for other doctors to teach them about lyme disease. But, it will give you a good education on the disease that you have.
It will also tell you exactly what good lyme disease treatment looks like.
To find what others have to say about Envita, use the LymeNet "Search" function. You'll see it at the top of the screen under "Post a Poll." This way, you can pull up all the old posts people have written about Envita or any other subject.
Plan on spending some time searching for a good lyme doctor. There is a learning curve to finding a good one. You can ask in Seeking a Doctor for a good one in your area. However, often in your area of the country, you have to be willing to travel to see someone good. Lyme doctors are few and far between. So, it is best if you are willing to travel.
For example, the doctor I recommend in Maryland requires his patients to come to the office in person once every 3 months. The other months he will do telephone or Skype appointments with you.
He sees patients from Canada, Florida, Texas, Ohio, New Mexico, upstate New York, etc. plus local people.
So, if your state doesn't have anybody good, this is how you can still get great lyme treatment.
Keep asking questions here and we will be happy to answer. Your story is a common one. I went undiagnosed for at least 10 years before a doctor thought to test me for lyme.
Still, I got rid of lyme (and babesiosis and bartonella) by going to a doctor who followed the Burrascano Guidelines. Then, over the years, I sent at least 5 of my friends to Burrascano type doctors and they also got well. This is why I believe in the Burrascano Guidelines.
Now that you have been diagnosed, you can start to make progress. We will all help you every step of the way.
Posts: 7 | From Arizona | Registered: Jan 2017
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Hi Kelly, welcome!
FIR sauna really helps me with mold (far infra red sauna). I take a binder afterwards to capture the mold and pesticides (bentonite clay works great for mold). The FIR sauna is great for lyme patients too (lyme hates heat, kills off some spirochetes).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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