Unable to even find a good Doctor and this in a seven million people town has got me so down .Yesterday i had my so called specialist for Lyme disease appt.I seen a nurse she took everything down and i ask to see the Doc.Well he has left the office his A/C at his house broke down ,he left i was told.She said i will call him and you will need not AB and this will be for the office visit $140.00 .I paid ,nothing was called in to the pharmacy at all.I started to cry at home and could not stop for hours.Then i had anger ,no i had RAGE .Called this morning my family Doctor nobody is calling me back,i am in disbelieve ,stressed and contemplating the strangest things.
We need to get the government to address this. People are suffering and this is not acceptable. I have been trying to get information on any action being taken. God bless you
I know what you are going through 100 percent her is my facebook name Tawnya Smith if you want to talk. Las vegas
We have to stick together
Kristina:
My heart goes out to you.
As someone below asks, where do you live? Lyme doctors like to keep under cover because they are persecuted by the mainstream medical establishment.
I found a list of about 20 Lyme Literate MD's and another 20 or so other non MD lyme friendly pracititioners in the Minneapolis area by joining a lyme group and then asking the moderator for access to a separate website where the list is stored.
She verified who I was and then gave me an access code. If you are in any of the 12 states where lyme is endemic, you should be able to find something similar. But it should be specific to your state or area.
Join all of the groups you can and then after you are authorized for the group, send a request to the moderator. It may take a while but you should get some references.
Good Luck!
tjb076...another Lymie...not by choice
tjb076 said:
Kristina:
My heart goes out to you.
As someone below asks, where do you live? Lyme doctors like to keep under cover because they are persecuted by the mainstream medical establishment.
I found a list of about 20 Lyme Literate MD's and another 20 or so other non MD lyme friendly pracititioners in the Minneapolis area by joining a lyme group and then asking the moderator for access to a separate website where the list is stored.
She verified who I was and then gave me an access code. If you are in any of the 12 states where lyme is endemic, you should be able to find something similar. But it should be specific to your state or area.
Join all of the groups you can and then after you are authorized for the group, send a request to the moderator. It may take a while but you should get some references.
Good Luck!
tjb076...another Lymie...not by choice
I agree wtih tjb076. Check that out for your area. I am in Michigan but know of a few other doctors around as well. Please, let me know where you are from and perhaps I can help.
Hi everyone ,
Thank you all for your great reply,s and encouraging words. I live in Texas ,Fort Worth and Texas is one state where this disease is supposedly rare.I am so fed up that i reached out to a Senator who has had this disease and he referred me to someone in Austin ,State Capitol, who is an advocate for Lyme people and to change the way Lyme patients are treated and he knows also Doctors that treat Lyme.He ask me to write him everything what has transpired from day 1 as i got the tick bite and promised me to get me to a good Doctor who will help me .It was not so much that i paid money at the last Doc and got nothing.what got to me was the plain, we promise but you get nothing , that brought me to tears.I usually never cry or get so emotional so i think Lyme is messing with my head also.I also told this man i think i need AB again ,i am not looking for pain management ,i am tough and can take the pains.I want ONE good Doctor that cares and knows this disease.I had actually gone even thru the Phone book calling Infectious Disease Doctors at random and was told i needed a Psychiatrist by one .I only ask if the Doc was on the up about Lyme and knew how to cure this and then that answer.I am sure i am more sane then these folks but it upset me greatly .The man at the State Senate ask me also to mane the Doctors i have bin dealing with and i will do so.I am such a Pit Bull i never will give up.I just have moments of deep despair and i get scared.My faith in God is great ,I will include all in my Prayer,God supposed to never give a bigger burden then you can handle but he also helps them who help them self . Seeking the cure .............
Kristina
WalkingBarefoot said:
Hi Kristina, I am sorry for the stunning comedy of errors you had to endure. More like torture. I'm a very skilled medical advocate, and I always start with what can we do in this moment now.
Let's start with - the $ you paid.
1.If it was by credit card, you can call the bank it is issued through and start a 'dispute'. This will stop all monies from going through to this so called medical practitioner. You have a strong case.
2. If by check put a stop payment on the check, and you can always ask - and get one if you don't have one - your personal banker to assist, if a dispute is necessary. You CAN get your funds back.
The Doctor: (who once you complete and have your monies back - fire him - and remember, this is key - YOU EMPLOY THEM, not the other way around) - its amazing what a quick call from a lawyer can make happen fast. If you have any friends in the legal field, or even someone who has done patient advocacy (I am very experienced in that arena), have them give a polite to the point call concerning your "put name here" unfortunate experience at his office.
I have great compassion for your frustration, I suffer a lot - and get how exhausting it is. Also a key component to self-advocacy, be calm cool and collected, and be prepared with plan A - B - and C. You can let yourself get into what I call the business mind, your managing yourself and your needs - become corporate in thinking.
1. The dr. has insurance, for lawsuits. Ask about it very politely.
2. Is he/she affiliated with a hospital, another words, private practice or employee of a larger entity? Find out the name of the CEO...or, look into human relations, discrimination, etc. if he is indeed part of a hospital team.
3. The way to get these jerks where they live? Do it through the system they work in.
4. PIVOTAL: When you get your $$ back, do you really want to waste any more time and precious energy on this situation, or would your time and energy be better spent moving forward and seeking a compassionate, skilled Doctor who really has your best interest in mind, and they ARE out there. You will find one, I too have been in your position. It takes true grit to be disabled and yet have to fight for every inch of assistance you get.
It won't always be this way and I truly have great compassion for your experience. Let it be your teacher, let this give you strength.
Be sure to ask for all medical records for the day you visited. Every single note, word, recorded or not. This is power.
Shake this loser and move on. Lots of different approaches, I gave you a few of my starters with these jokers, and usually this is all it takes. I may be enraged beyond words, but to be smooth while your screwing them back within the bounds of the law is beautiful. They scare very easily.
You need your prescription, you can get it from another physician. Have faith and be the pit-bull. (only when you have to) wishing you all the blessings that can come your way, and angels to lead you to the right healer for you. Barefoot.
Kristina said: Thanks i have taken great steps toward finding a good Doc ,your advise is very sound ,God bless you
WalkingBarefoot said:Hi Kristina, I am sorry for the stunning comedy of errors you had to endure. More like torture. I'm a very skilled medical advocate, and I always start with what can we do in this moment now.
Let's start with - the $ you paid.
1.If it was by credit card, you can call the bank it is issued through and start a 'dispute'. This will stop all monies from going through to this so called medical practitioner. You have a strong case.
2. If by check put a stop payment on the check, and you can always ask - and get one if you don't have one - your personal banker to assist, if a dispute is necessary. You CAN get your funds back.
The Doctor: (who once you complete and have your monies back - fire him - and remember, this is key - YOU EMPLOY THEM, not the other way around) - its amazing what a quick call from a lawyer can make happen fast. If you have any friends in the legal field, or even someone who has done patient advocacy (I am very experienced in that arena), have them give a polite to the point call concerning your "put name here" unfortunate experience at his office.
I have great compassion for your frustration, I suffer a lot - and get how exhausting it is. Also a key component to self-advocacy, be calm cool and collected, and be prepared with plan A - B - and C. You can let yourself get into what I call the business mind, your managing yourself and your needs - become corporate in thinking.
1. The dr. has insurance, for lawsuits. Ask about it very politely.
2. Is he/she affiliated with a hospital, another words, private practice or employee of a larger entity? Find out the name of the CEO...or, look into human relations, discrimination, etc. if he is indeed part of a hospital team.
3. The way to get these jerks where they live? Do it through the system they work in.
4. PIVOTAL: When you get your $$ back, do you really want to waste any more time and precious energy on this situation, or would your time and energy be better spent moving forward and seeking a compassionate, skilled Doctor who really has your best interest in mind, and they ARE out there. You will find one, I too have been in your position. It takes true grit to be disabled and yet have to fight for every inch of assistance you get.
It won't always be this way and I truly have great compassion for your experience. Let it be your teacher, let this give you strength.
Be sure to ask for all medical records for the day you visited. Every single note, word, recorded or not. This is power.
Shake this loser and move on. Lots of different approaches, I gave you a few of my starters with these jokers, and usually this is all it takes. I may be enraged beyond words, but to be smooth while your screwing them back within the bounds of the law is beautiful. They scare very easily.
You need your prescription, you can get it from another physician. Have faith and be the pit-bull. (only when you have to) wishing you all the blessings that can come your way, and angels to lead you to the right healer for you. Barefoot.
Kristina said:
Hi everyone ,
Thank you all for your great reply,s and encouraging words. I live in Texas ,Fort Worth and Texas is one state where this disease is supposedly rare.I am so fed up that i reached out to a Senator who has had this disease and he referred me to someone in Austin ,State Capitol, who is an advocate for Lyme people and to change the way Lyme patients are treated and he knows also Doctors that treat Lyme.He ask me to write him everything what has transpired from day 1 as i got the tick bite and promised me to get me to a good Doctor who will help me .It was not so much that i paid money at the last Doc and got nothing.what got to me was the plain, we promise but you get nothing , that brought me to tears.I usually never cry or get so emotional so i think Lyme is messing with my head also.I also told this man i think i need AB again ,i am not looking for pain management ,i am tough and can take the pains.I want ONE good Doctor that cares and knows this disease.I had actually gone even thru the Phone book calling Infectious Disease Doctors at random and was told i needed a Psychiatrist by one .I only ask if the Doc was on the up about Lyme and knew how to cure this and then that answer.I am sure i am more sane then these folks but it upset me greatly .The man at the State Senate ask me also to mane the Doctors i have bin dealing with and i will do so.I am such a Pit Bull i never will give up.I just have moments of deep despair and i get scared.My faith in God is great ,I will include all in my Prayer,God supposed to never give a bigger burden then you can handle but he also helps them who help them self . Seeking the cure .............
Kristina
I LIVE IN TEXAS, HOUSTON, WHAT SENATOR WITH LYME ARE YOU TALKING TO. I TOO, CANT FIND A DR.
Even in Texas Legislators, don't practice medicine. In the four states where legislatures have decided they can make Chronic Lyme a disease, legitimate practitioners still won't treat a disease that does not exist, but rather continue to treat. Where they have ordered reviews of existing literature science and "studies" by independent scientific groups NOT ONCE has the "chronic lyme" scientific base been able to stand up to scrutiny. No fewer than 50 studies have been world wide testing the use of antibiotics long term IV etc. as prescribed by the ILADS and in no study has the protocol out-performed a placebo except in one area - serious complications and death from antibiotics. At least one LLMD has pending murder charges.
There is effective treatment for those who actually have Lyme (most being treated never did have it) and there is effective treatment for those who have PTLDS, what doesn't exist is a cure as simple as handing an alternative practitioner up to 15,000.00 for antibiotic treatment.
What you all may have missed is the legions of people lining up extolling the success of their Lyme Literate Treatment. What the internet is full of is legions of folks going to the next treatment, the next protocol, the next antibiotic. ANY treatment for any disease is 25 -40% effective for a short term. This is also well known as the placebo effect. If the treatment was effective there would be no need for legislators to legitimize it.
This is a tough thing the non-medical non scientific voice has gotten so strong, people are getting drawn in that deserve better. They don't know how frequently they are being duped. The ILADS and the VAXERS have developed such a strong voice that lost in the shuffle is the fact NOBODY, NOT ONE PERSON should have Lyme. There are three available vaccines. Two have not been available since the early part of the decade as it simply was too much hassle to deal with. One is getting ready to publish its stage 2 results as of today. Despite the fact the "molecular mimicry" theory has been long disproved. "legislators" removed the vaccine from the NVICP list.
I understand your frustration in trying to find a good doctor. Been there, done that, wrote the book. I would definitely report this docotor to whatever medical boards he is affiliated with and do what you have already been advised as far as getting your money back.
If you have already been treated with initial antibiotics, then the chances that you need further antibiotics are rare. What is so frustrating with Lyme is that even when the infection is gone, it leaves behind damage to the body that causes pain, fatigue and mental fog. These can be treated but not cured. It takes an unbeleivable amount of patience to get diagnosed with whatever joys Lyme has left in its wake and even more still to get the right treatment to help resolve those problems. Add to that, we all have to come to grips with our "new normal". While frustrating initally, it can be done, and most get their lives back. Instead of searching for a so called "LLMD" to take your money and give you no cure, it is better to start the hunt for a good rheumatologist. They are quite skilled at treating autoimmune diseases and fibromyalgia (two very common Lyme presents). Get a journal or a medical journal app to document your symptoms so that you have some good data to share with your new doctor.
I wish you the very best of luck and hope that you have more good days than bad ones. :-)
Kristina said:
Hi everyone ,
Thank you all for your great reply,s and encouraging words. I live in Texas ,Fort Worth and Texas is one state where this disease is supposedly rare.I am so fed up that i reached out to a Senator who has had this disease and he referred me to someone in Austin ,State Capitol, who is an advocate for Lyme people and to change the way Lyme patients are treated and he knows also Doctors that treat Lyme.He ask me to write him everything what has transpired from day 1 as i got the tick bite and promised me to get me to a good Doctor who will help me .It was not so much that i paid money at the last Doc and got nothing.what got to me was the plain, we promise but you get nothing , that brought me to tears.I usually never cry or get so emotional so i think Lyme is messing with my head also.I also told this man i think i need AB again ,i am not looking for pain management ,i am tough and can take the pains.I want ONE good Doctor that cares and knows this disease.I had actually gone even thru the Phone book calling Infectious Disease Doctors at random and was told i needed a Psychiatrist by one .I only ask if the Doc was on the up about Lyme and knew how to cure this and then that answer.I am sure i am more sane then these folks but it upset me greatly .The man at the State Senate ask me also to mane the Doctors i have bin dealing with and i will do so.I am such a Pit Bull i never will give up.I just have moments of deep despair and i get scared.My faith in God is great ,I will include all in my Prayer,God supposed to never give a bigger burden then you can handle but he also helps them who help them self . Seeking the cure .............
Kristina
tj1 said:
Even in Texas Legislators, don't practice medicine. In the four states where legislatures have decided they can make Chronic Lyme a disease, legitimate practitioners still won't treat a disease that does not exist, but rather continue to treat. Where they have ordered reviews of existing literature science and "studies" by independent scientific groups NOT ONCE has the "chronic lyme" scientific base been able to stand up to scrutiny. No fewer than 50 studies have been world wide testing the use of antibiotics long term IV etc. as prescribed by the ILADS and in no study has the protocol out-performed a placebo except in one area - serious complications and death from antibiotics. At least one LLMD has pending murder charges.
There is effective treatment for those who actually have Lyme (most being treated never did have it) and there is effective treatment for those who have PTLDS, what doesn't exist is a cure as simple as handing an alternative practitioner up to 15,000.00 for antibiotic treatment.
What you all may have missed is the legions of people lining up extolling the success of their Lyme Literate Treatment. What the internet is full of is legions of folks going to the next treatment, the next protocol, the next antibiotic. ANY treatment for any disease is 25 -40% effective for a short term. This is also well known as the placebo effect. If the treatment was effective there would be no need for legislators to legitimize it.
This is a tough thing the non-medical non scientific voice has gotten so strong, people are getting drawn in that deserve better. They don't know how frequently they are being duped. The ILADS and the VAXERS have developed such a strong voice that lost in the shuffle is the fact NOBODY, NOT ONE PERSON should have Lyme. There are three available vaccines. Two have not been available since the early part of the decade as it simply was too much hassle to deal with. One is getting ready to publish its stage 2 results as of today. Despite the fact the "molecular mimicry" theory has been long disproved. "legislators" removed the vaccine from the NVICP list.
I live in Rhode island where Lyme is almost an epidemic and still no Dr Ben to at least 8 in the past year now I have to go to different Dr to treat the symptoms an eye Dr for the blurred vision a neurologist for the vertigo memory moods and numbness a cardiologist for heart oalps and my primary care for pain management and a counselor for depression uggg
I’ve had Lyme for 8 years and was on antibiotics for 6 1/2 years. I’ve been on antidepressants since 1989 and was diagnosed bipolar. My meds for depression/bipolar worked great. But after being infected with Lyme I noticed my psych drugs aren’t working. I have a new Lyme doctor who has put me on detox, due to toxins in my body caused from having so many meds for 6 1/2 .Haven’t been on antibiotics for a year now and am detoxing. I’ve had herx reactions now while having the detox. I feel like my head is on fire, anxiety, anger, and feel head pressure, as well as my skin over my entire body burning and tingling. My Lyme doctor is highly knowledgeable and warned me of possible herx reactions. It’s been hard on me as I live alone. My kids help by picking up my groceries, etc. Hard to think positive at this time. I try to think positive but it’s hard most of the time. I pray a lot. I’ve been to so many doctors who haven’t been as thorough as this dr. I have to be driven 3 1/2 hours one way to see
him. I feel alone and am scared of the anxiety and depression, etc. I need to know if there are others who are going through the same things as me. It would be encouraging to communicate with others who are or have gone through this.