Lyme Discussion
- Thread starter hotcoffee
- Start date
Jameo
What?!
After years of not feeling well and years of many visits to my doctor I’ve decided I need to become my own health advocate. Each day I feel more drained, achier, poorer memory, than the previous day. My doctor did one “Lyme test” a couple years ago and because it was negative, she went no further. My recent research now tells me my symptoms should be her focus in determining if I have Lyme disease, as there is actually no blood test that clearly diagnoses this disease. I realize the treatment plan is very important in order to truly kill the disease vs simply taking the edge off just to have the symptoms return after the antibiotics stop, so I am thinking MY doctor is probably not the person I would want to manage this for me. Which doctors do you recommend for diagnosing and treating Lyme disease? If it turns out I have Lyme disease I need to have confidence in the treatment plan the doctor recommends.
hotcoffee
New Member
I went out on the web and typed in LLMD. The first site to pop up was selling a book. I've also seen other sites selling incense and various herbal treatments. I even saw one site that was advertising a colon cleansing as a cure. The search for a Lyme Literate Medical Doctor [LLMD] can be a treacherous one. If you are lucky enough to know you need a LLMD, you are lightyears ahead of where many of us started.
I found this out there on the web. I pulled out some of the garbage the guy was selling and left in the points that really make good sense.
It's not very likely that you will walk into any random general practitioner’s office or general infectious disease doctor’s office and recieve good Lyme disease care!
Seaching the Lyme Disease forums in your area is one way to begin. As a rule Lyme patients are either sharing the names of their doctors openly or guarding the information as if it were the key to life.
If you don't have a Lyme Literate Doctor in your area, seek out a general practitioner who may not be aware of the condition but who has instead proven to you over past relationship that he or she is open-minded, accommodating, humble, and inquisitive.
It's important to note... if you approach your doctor about Lyme and they simply shut you down... you should continue your seach elsewhere. There is no point in wasting your time trying to change a doctor’s mind when you can instead spend your time and energy cultivating a professional relationship with one of the hundreds of physicians out there who will be accommodating and helpful to you.
The simple fact is that most physicians are not only ignorant of Lyme disease, but doctors are actually taught in medical school that it is a simple, rare infection that they will never see in their practices.
Instead of fighting it, just accept that the Lyme disease of medical practice field is years ahead of its time, and find someone who is already reading and working with the disease.
Most of all..... BE YOUR OWN ADVOCATE.... You have to depend on yourself first. Good Luck on your search....
I found this out there on the web. I pulled out some of the garbage the guy was selling and left in the points that really make good sense.
It's not very likely that you will walk into any random general practitioner’s office or general infectious disease doctor’s office and recieve good Lyme disease care!
- Awareness of Lyme Disease is very low among U.S. physicians.
- By seeing a doctor who is not versed in the condition, you are almost guaranteeing that you will be sent out of the office empty-handed, if not ridiculed.
- Presently, Lyme patients have a difficult time gaining recognition and validation in the United States.
- Most U.S. physicians do not even acknowledge the existence of Chronic Lyme Disease.
Seaching the Lyme Disease forums in your area is one way to begin. As a rule Lyme patients are either sharing the names of their doctors openly or guarding the information as if it were the key to life.
If you don't have a Lyme Literate Doctor in your area, seek out a general practitioner who may not be aware of the condition but who has instead proven to you over past relationship that he or she is open-minded, accommodating, humble, and inquisitive.
- He or she may be willing to do what it takes to become educated on Lyme disease.
- When it comes to Lyme-literate physicians, the key qualities to seek are open-mindedness and humility.
It's important to note... if you approach your doctor about Lyme and they simply shut you down... you should continue your seach elsewhere. There is no point in wasting your time trying to change a doctor’s mind when you can instead spend your time and energy cultivating a professional relationship with one of the hundreds of physicians out there who will be accommodating and helpful to you.
The simple fact is that most physicians are not only ignorant of Lyme disease, but doctors are actually taught in medical school that it is a simple, rare infection that they will never see in their practices.
Instead of fighting it, just accept that the Lyme disease of medical practice field is years ahead of its time, and find someone who is already reading and working with the disease.
Most of all..... BE YOUR OWN ADVOCATE.... You have to depend on yourself first. Good Luck on your search....
Purplefox
I AM an enigma
Hello to all my fellow Lymies. It has been a long time since I have been on here, and it has taken a while for me to read this entire thread.
First, I hope all of you are doing well in your different stages of treatment/recovery. I have had my Groshong port out for almost 5 months now. Now, my symptoms are coming back. Totally sux.
2 years ago I had my PICC line inserted and did IV Rocephin for a little over a month. That is all insurance would pay for, so according to that Doctor *POOF* I was cured.
After finding another LLMD, I had the groshong placed in April last year. Rocephin for first 3 months, then I lost my gallbladder. That is one of the side effects of long term rocephin use. 3 more months on a different IV ABX and port was removed. Dr. Pfaltz took it out right there in his office. No big deal! I was expected to have to go in for another out patient visit at Calvert, but nope... just a yank!
Now, here I am 5 months after removal and I feel like I am heading back to step one. I am going on a mini vacation the end of this month, then after that I will have my CD57 levels checked and take it from there.
My continued prayers for all of us!!
Hugs,
Purplefox
First, I hope all of you are doing well in your different stages of treatment/recovery. I have had my Groshong port out for almost 5 months now. Now, my symptoms are coming back. Totally sux.
2 years ago I had my PICC line inserted and did IV Rocephin for a little over a month. That is all insurance would pay for, so according to that Doctor *POOF* I was cured.
After finding another LLMD, I had the groshong placed in April last year. Rocephin for first 3 months, then I lost my gallbladder. That is one of the side effects of long term rocephin use. 3 more months on a different IV ABX and port was removed. Dr. Pfaltz took it out right there in his office. No big deal! I was expected to have to go in for another out patient visit at Calvert, but nope... just a yank!
Now, here I am 5 months after removal and I feel like I am heading back to step one. I am going on a mini vacation the end of this month, then after that I will have my CD57 levels checked and take it from there.
My continued prayers for all of us!!
Hugs,
Purplefox
hotcoffee
New Member
Well.... after stringing together 3 great days.... I was beginning to look forward to the end..... then I read your post.... that sucks...
I hope you will be in recession soon....
Becky
Purplefox
I AM an enigma
Well.... after stringing together 3 great days.... I was beginning to look forward to the end..... then I read your post.... that sucks...
I hope you will be in recession soon....
Becky
Hey, you keep your chin and hopes up. Everyone is different and as we all know, there is no said pattern to this disease.
Keep the good days goin'!!!
DecemberGal
Member
I get my PICC out tonight!!!
That's great Jameo.
Will you be doing naturals or something else?
Jameo
What?!
My doc wants me to continue taking the herbs. Cat's Claw, Andrographis, Vit C, Resveratrol. No more antibiotics
DecemberGal
Member
My doc wants me to continue taking the herbs. Cat's Claw, Andrographis, Vit C, Resveratrol. No more antibiotics
Sounds like the same protocol my husband was put on when he got his IV out. He is much happier with not being on the anti-biotics anymore.
Have a great day. It looks to be a good one weather wise.
Purplefox
I AM an enigma
YEAH!!!!!!
Truly a cause for celebration. Good luck with after care!
DecemberGal
Member
Purplefox, did you go on any naturals after doing the anti-biotics?
I hope you feel better soon.
ShyGirl
Active Member
Jameo
What?!
gobblergetter
New Member
Just wanted to bump this post up a bit. Thanx.
ShyGirl
Active Member
Free Lyme Awareness Night - Sunderland, MD
I just received this and wanted to pass it on. Dr. Cafferty will be one of the speakers.
Wednesday March 24th, from 7 to 9.
Free to the public
Sponsored by: Lyme awareness Network 50 Clyde Jones Rd. Sunderland, MD (across from Sullivan's Autobody)
Location is at the Church of Jesus Christ of Latter Day Saints
Recognize symptoms of lyme:
Painful, joints, achy or weak muscles, exhausting fatigue
Changes in memory, difficulty with verbal skills or multitasking
Neurological twitches, numbness, tingling
Space is limited so please call 443-968-1991 if you would like to attend.
I just received this and wanted to pass it on. Dr. Cafferty will be one of the speakers.
Wednesday March 24th, from 7 to 9.
Free to the public
Sponsored by: Lyme awareness Network 50 Clyde Jones Rd. Sunderland, MD (across from Sullivan's Autobody)
Location is at the Church of Jesus Christ of Latter Day Saints
Recognize symptoms of lyme:
Painful, joints, achy or weak muscles, exhausting fatigue
Changes in memory, difficulty with verbal skills or multitasking
Neurological twitches, numbness, tingling
Space is limited so please call 443-968-1991 if you would like to attend.