Replied By: sandiegolymer on Apr 13, 2012, 4:48PM
Dear Dr. Phil,
I was previously a VERY active person - I was a documentary filmmaker and had just wrapped on a feature length documentary that I'd been producing and was on top of the world. I had a great job, a great life and was getting ready to move to LA to work in the film industry. In the meantime, I decided to take a much needed vacation back in Virginia where my family and friends live.
During that time, I had tons of energy like I always have, and was spending a lot of time outdoors in the woods in what I would later find out was a high endemic area for Lyme ticks. I concluded my vacation, drove back to San Diego and was getting ready to move to LA, when about 3 weeks later, I came down with a bad flu. I thought nothing of it, and just assumed it was a "run of the mill" flu that would be gone within a week. I did noticed a very large purple bruise about the size of a melon on my left thigh which looked very strange, and I KNEW I hadn't run into anything that hard to cause a bruise/rash that large. I also developed very strange rashes on my right hand, fingers, and palm. Again, I just ignored them, I wasn't one to run off to a doctor at the slightest ailment - I figured they would all go away.
The flu eventually subsided, but I was a bit more tired than usual. I had to stop running and just took walks instead. I just assumed they were lingering effects from my "flu".
A week later, I went to the store and stopped right outside the entrance. I realized that I had completely forgotten WHY I was there and it was the most scary, unsettling feeling I've ever had. That was the beginning of my strange cognitive and neuro issues I would have for the next 2 years.
I had previously been an extremely active person - running up to 4 miles a day and hiking a few times a week. All of a sudden, I was so tired I couldn't get out of bed and my legs became weaker and weaker. At first I thought I was anemic, and when I went to a clinic, they said you probably have mono even though you aren't testing positive. I began to get fevers, night sweats, sleep disturbances, abdominal pain, and horrible nausea. Within 6 months I was developing severe arthritis in every joint in my body and THEN...the worst. . . nerve pain developing in my arms and legs. It was horrific pain.
It took 7 months and a dozen doctors to diagnose me with Lyme, and since then, my entire world has been turned upside down! I have had to learn everything I could about Lyme Disease since I live in Southern California, we only have FOUR Lyme Literate doctors in this area.
I have lived with Lyme Disease for over 2 years now and have had to educate myself because of the appalling lack of (correct) information about this disease. There is so much misinformation about Lyme, that I took it upon myself to read every book, article and studies available.
I'm a member of several Lyme groups and have learned so much by listening to other patients about their experiences and treatments. Thankfully I now have a wonderful LLMD (Lyme Literate MD) and am finally getting the treatment that I need.
It saddens me when well meaning doctors tell their patients that they should be CURED after 3 weeks of antibiotics and yet these same patients are still suffering years later because they still have large bacterial loads in their body that are causing symptoms like fatigue, brain fog, memory loss, nausea, weight loss/gain, sinus issues, muscle weakness and sometimes lack of mobility, nerve pain, joint pain, seizures, psychiatric manifestations, etc. - the list goes on and on.
We need doctors to come together and realize that the past guidelines are NOT effective and they need to take their patients seriously rather than suggest that maybe it's "all in their head" (which happens more often than you'd think!)
I am now unable to walk without a cane or walker (depending on how bad my legs are!), I went for a year of severe peripheral neuropathy in both arms and legs - the brain fog and lack of focus/concentration (is maddening!), fatigue, joint pain, nausea, headaches, sinus issues. . .the list goes on.
But I do want to add this: I had a positive Lyme test and yet STILL had resistance from doctors to treat me. After my primary treated me according to the guidelines of the IDSA (Infectious Disease Society of America), and I STILL wasn't showing improvement after 4 weeks of Doxycycline, he said that his "ID friends told him that I couldn't still have Lyme.
Well, that's all fine and well, but I'M STILL SICK and no one could tell me what was wrong with me. I was in horrific nerve pain which no amount of pain meds would help and it wasn't until I began IV Antibiotic treatment after living with this illness for a year and a half, that I FINALLY started to see improvement. My severe neuropathy finally started to subside after 5 weeks of IV abx and I stopped shopping for wheelchairs. Now I'm able to walk with a cane (and only need the walker every once in a while) and although I still suffer from many symptoms, I am in WAY better shape after IV abx, then I was before I started.
Lyme Disease is such a difficult, complex disease and I understand why so many doctors are reluctant to treat Lyme patients because they simply haven't been trained properly. I know most doctors have their patients best welfare at heart - but they need to take a lesson from the brave Lyme Literate doctors who have gone out of their way to LOOK at the studies and the research and more importantly, LISTEN to their patients.
We are not hypochondriacs or suffering from the need for attention. Believe me, I was a very confident person before I got sick, and this illness has not given me any SIGNIFICANCE at all - in fact, it has ROBBED me of over two years of my life.
But I have and always will be, an optimist. And I am SO thankful to Dr. Phil and his producers for being brave enough to take on this very controversial subject. I truly hope that it WILL raise awareness, and bring about more discussions so that the thousands of people who are sick will have hope that someday, they will be taken seriously and get the treatment and support they so deserve.
Best,
Sandie
I was previously a VERY active person - I was a documentary filmmaker and had just wrapped on a feature length documentary that I'd been producing and was on top of the world. I had a great job, a great life and was getting ready to move to LA to work in the film industry. In the meantime, I decided to take a much needed vacation back in Virginia where my family and friends live.
During that time, I had tons of energy like I always have, and was spending a lot of time outdoors in the woods in what I would later find out was a high endemic area for Lyme ticks. I concluded my vacation, drove back to San Diego and was getting ready to move to LA, when about 3 weeks later, I came down with a bad flu. I thought nothing of it, and just assumed it was a "run of the mill" flu that would be gone within a week. I did noticed a very large purple bruise about the size of a melon on my left thigh which looked very strange, and I KNEW I hadn't run into anything that hard to cause a bruise/rash that large. I also developed very strange rashes on my right hand, fingers, and palm. Again, I just ignored them, I wasn't one to run off to a doctor at the slightest ailment - I figured they would all go away.
The flu eventually subsided, but I was a bit more tired than usual. I had to stop running and just took walks instead. I just assumed they were lingering effects from my "flu".
A week later, I went to the store and stopped right outside the entrance. I realized that I had completely forgotten WHY I was there and it was the most scary, unsettling feeling I've ever had. That was the beginning of my strange cognitive and neuro issues I would have for the next 2 years.
I had previously been an extremely active person - running up to 4 miles a day and hiking a few times a week. All of a sudden, I was so tired I couldn't get out of bed and my legs became weaker and weaker. At first I thought I was anemic, and when I went to a clinic, they said you probably have mono even though you aren't testing positive. I began to get fevers, night sweats, sleep disturbances, abdominal pain, and horrible nausea. Within 6 months I was developing severe arthritis in every joint in my body and THEN...the worst. . . nerve pain developing in my arms and legs. It was horrific pain.
It took 7 months and a dozen doctors to diagnose me with Lyme, and since then, my entire world has been turned upside down! I have had to learn everything I could about Lyme Disease since I live in Southern California, we only have FOUR Lyme Literate doctors in this area.
I have lived with Lyme Disease for over 2 years now and have had to educate myself because of the appalling lack of (correct) information about this disease. There is so much misinformation about Lyme, that I took it upon myself to read every book, article and studies available.
I'm a member of several Lyme groups and have learned so much by listening to other patients about their experiences and treatments. Thankfully I now have a wonderful LLMD (Lyme Literate MD) and am finally getting the treatment that I need.
It saddens me when well meaning doctors tell their patients that they should be CURED after 3 weeks of antibiotics and yet these same patients are still suffering years later because they still have large bacterial loads in their body that are causing symptoms like fatigue, brain fog, memory loss, nausea, weight loss/gain, sinus issues, muscle weakness and sometimes lack of mobility, nerve pain, joint pain, seizures, psychiatric manifestations, etc. - the list goes on and on.
We need doctors to come together and realize that the past guidelines are NOT effective and they need to take their patients seriously rather than suggest that maybe it's "all in their head" (which happens more often than you'd think!)
I am now unable to walk without a cane or walker (depending on how bad my legs are!), I went for a year of severe peripheral neuropathy in both arms and legs - the brain fog and lack of focus/concentration (is maddening!), fatigue, joint pain, nausea, headaches, sinus issues. . .the list goes on.
But I do want to add this: I had a positive Lyme test and yet STILL had resistance from doctors to treat me. After my primary treated me according to the guidelines of the IDSA (Infectious Disease Society of America), and I STILL wasn't showing improvement after 4 weeks of Doxycycline, he said that his "ID friends told him that I couldn't still have Lyme.
Well, that's all fine and well, but I'M STILL SICK and no one could tell me what was wrong with me. I was in horrific nerve pain which no amount of pain meds would help and it wasn't until I began IV Antibiotic treatment after living with this illness for a year and a half, that I FINALLY started to see improvement. My severe neuropathy finally started to subside after 5 weeks of IV abx and I stopped shopping for wheelchairs. Now I'm able to walk with a cane (and only need the walker every once in a while) and although I still suffer from many symptoms, I am in WAY better shape after IV abx, then I was before I started.
Lyme Disease is such a difficult, complex disease and I understand why so many doctors are reluctant to treat Lyme patients because they simply haven't been trained properly. I know most doctors have their patients best welfare at heart - but they need to take a lesson from the brave Lyme Literate doctors who have gone out of their way to LOOK at the studies and the research and more importantly, LISTEN to their patients.
We are not hypochondriacs or suffering from the need for attention. Believe me, I was a very confident person before I got sick, and this illness has not given me any SIGNIFICANCE at all - in fact, it has ROBBED me of over two years of my life.
But I have and always will be, an optimist. And I am SO thankful to Dr. Phil and his producers for being brave enough to take on this very controversial subject. I truly hope that it WILL raise awareness, and bring about more discussions so that the thousands of people who are sick will have hope that someday, they will be taken seriously and get the treatment and support they so deserve.
Best,
Sandie
I cannot express how enraged I am at the current medical system. I tested positive a few weeks ago and did all the research. The system is so backwards and I don't know how I will go on with this. Do you know of any LLMDs in Southern California? I am moving from WA to the Inland Empire area in April and I am desperate. All the doctors I've looked at charge around $300 for an intial visit with no insurance coverage. I have $46 in my bank account and I'm unemployed. I don't know how to get help. Any information from you would be greatly appreciated. I'm sorry for the rant but I don't have anyone to talk to.
ReplyDeleteRoxy - I DO know of some LLMDS that I can refer you to in the SoCal area. If you send me an email to: leahpuppy31 AT hotmail.com (use the @ symbol for AT - I have to do this to prevent Autobots from spamming me!) I will be happy to help. :)
DeleteBest,
Sandie