Aa
Think I have Lyme
Hey everyone,
I wanted to let you all know what I've been going through and see if anyone can identify. I think I have Lyme disease, and I'm going to schedule an appt with a naturopath tomorrow. I'm really worried, especially since my symptoms appear to be more advanced. Here's the breakdown:
Started with intense arthritis in both wrists, mellowed out and spread to forearms. Had my mind blown as to why this was happening.
For a couple weeks, I just dealt with the pain in my forearms/wrists, and the tingling. I saw a chiropractic, but a cervical MRI showed nothing wrong.
About 3 weeks after the first onset of symptoms, one of my calves had about a 6 hour spasm - the day after, all my symptoms went away for about 3 days, although i was still overall a little out of energy.
The 4th week (this past week), I've been feeling strong flu like symptoms - chills at night, low energy, headache. The other symptoms came back with a vengeance this time. Halfway through the week, I started having memory problems and fatigue a couple hours a day. I was also really thirsty, and peeing constantly (I don't have diabetes). On Friday, I was really struggling to stay on top of my work and think straight. Also started having panic attacks/anxiety. That night, I couldn't sleep because both my calves were spasming, and it was very uncomfortable. I've been having panic attacks throughout the day, and sometimes not thinking clearly. One side of my jaw, especially my teeth, feels numb.
I went to the ER on Saturday night because I was freaking out, but they told me "we don't have lyme here" (I live in Portland, OR), and they sent me home. The research I did says otherwise, although it doesnt seem to be very prevalent around here.
Until I can see my naturopath, does anyone have any advice dealing with symptoms? the muscle cramping, headaches, the mental slowness? I'm going to try taking magnesium supplements and Epsom Salt to see if it helps. Thanks in advance for any advice.
I wanted to let you all know what I've been going through and see if anyone can identify. I think I have Lyme disease, and I'm going to schedule an appt with a naturopath tomorrow. I'm really worried, especially since my symptoms appear to be more advanced. Here's the breakdown:
Started with intense arthritis in both wrists, mellowed out and spread to forearms. Had my mind blown as to why this was happening.
For a couple weeks, I just dealt with the pain in my forearms/wrists, and the tingling. I saw a chiropractic, but a cervical MRI showed nothing wrong.
About 3 weeks after the first onset of symptoms, one of my calves had about a 6 hour spasm - the day after, all my symptoms went away for about 3 days, although i was still overall a little out of energy.
The 4th week (this past week), I've been feeling strong flu like symptoms - chills at night, low energy, headache. The other symptoms came back with a vengeance this time. Halfway through the week, I started having memory problems and fatigue a couple hours a day. I was also really thirsty, and peeing constantly (I don't have diabetes). On Friday, I was really struggling to stay on top of my work and think straight. Also started having panic attacks/anxiety. That night, I couldn't sleep because both my calves were spasming, and it was very uncomfortable. I've been having panic attacks throughout the day, and sometimes not thinking clearly. One side of my jaw, especially my teeth, feels numb.
I went to the ER on Saturday night because I was freaking out, but they told me "we don't have lyme here" (I live in Portland, OR), and they sent me home. The research I did says otherwise, although it doesnt seem to be very prevalent around here.
Until I can see my naturopath, does anyone have any advice dealing with symptoms? the muscle cramping, headaches, the mental slowness? I'm going to try taking magnesium supplements and Epsom Salt to see if it helps. Thanks in advance for any advice.
"I agree its been instilled in my head not to name doctors on forums and I can't just do it because of all the politics causing them problems."
Mojo,
I respect your decision to not post doctor's names.
I know that it's been instilled in people's heads to not post Lyme doctors names. If a doctor has expressly asked to not have his name put out publicly, that's something I'd never do.
If the doctor is truly 'hidden' and flies beneath the radar all the time then that's a good reason to not put his/her name out there.
But when simple Google search of "Lyme doctor in XXX (state)" brings up dozens of hits-----obviously that doctor doesn't mind.
Mojo,
I respect your decision to not post doctor's names.
I know that it's been instilled in people's heads to not post Lyme doctors names. If a doctor has expressly asked to not have his name put out publicly, that's something I'd never do.
If the doctor is truly 'hidden' and flies beneath the radar all the time then that's a good reason to not put his/her name out there.
But when simple Google search of "Lyme doctor in XXX (state)" brings up dozens of hits-----obviously that doctor doesn't mind.
I agree its been instilled in my head not to name doctors on forums and I can't just do it because of all the politics causing them problems.
Drew----- Just checking up to see how you're doing since we haven't heard back from you. Have you had that very high bilirubin and albumin checked out by a doctor (MD) yet?
I think that should be of prime importance because it might be serious.
About Dr. Marty Ross---- I checked further into his practice and his Skype consultations. They aren't inexpensive.
But, for someone living in OR and with no or very little access to a doctor who will treat Lyme disease, I think you should check a bit further before you pay that fee.
His One-on-One Skype consultations can be worth it for many people. But, as his web site states, he will give a treatment plan FOR USE IN CONJUNCTION WITH that person's doctor.
Well, that pretty much leaves out most of Lymies in OR because we can't get a doctor who will treat us. (grin)
But if you DO have a naturopath who will treat with long term abx---- then Dr. Ross' and his treatment plan may be helpful---AS LONG AS IT'S WITH ANTIBIOTICS.
But first, I hope you're being seen by a doctor for your high bilirubin etc.
I think that should be of prime importance because it might be serious.
About Dr. Marty Ross---- I checked further into his practice and his Skype consultations. They aren't inexpensive.
But, for someone living in OR and with no or very little access to a doctor who will treat Lyme disease, I think you should check a bit further before you pay that fee.
His One-on-One Skype consultations can be worth it for many people. But, as his web site states, he will give a treatment plan FOR USE IN CONJUNCTION WITH that person's doctor.
Well, that pretty much leaves out most of Lymies in OR because we can't get a doctor who will treat us. (grin)
But if you DO have a naturopath who will treat with long term abx---- then Dr. Ross' and his treatment plan may be helpful---AS LONG AS IT'S WITH ANTIBIOTICS.
But first, I hope you're being seen by a doctor for your high bilirubin etc.
Emily, you say above:
"You can also provide doctor names here, so long as you are not saying anything negative."
fyi, those of us in the Lyme world have a general policy of NOT naming doctors in public, because in quite a few states, MDs who are identified as treating Lyme disease in a way that runs contrary to the standards set by the Infectious Disease Society of America (IDSA) are too often brought up before local and state medical boards for diagnosing and treating Lyme in a manner more aggressive than the IDSA approach.
Some states have 'freedom of conscience' laws which permit MDs to practice as they see fit, but many states require MDs to practice according to specific approaches for diagnosis and treatment, on the theory that, for example, all is known that needs to be known about Lyme disease, and a few weeks of doxycycline will fix you right up; any remaining symptoms or suffering are not due to an incompletely or inadequately treated infection, but are instead the immune system's reaction to a now-vanished illness.
Unfortunately, politics has taken hold within the IDSA, and in some states, those suffering from Lyme are doomed to continue in that condition. Lyme is not an inconsequential disease, and it can even lead to death from, for example, cardiac involvement. Even when not risking life, Lyme often impairs significantly the ability to function day to day in the simplest of tasks, let along taking care of family and working.
On this site, we have an informal policy of NOT naming in public those MDs who risk their livelihoods to diagnose and treat us more aggressively, because if the Lyme specialists are cowed into silence, we will have no one to treat us.
There is a serious split in the medical community that is not anywhere near remedied, and we cannot risk losing the brave MDs who treat us as they, the MDs, believe is appropriate. I had Lyme and was virtually non-functioning in my daily life. I lost my job and was largely unable to care for my family. If I had not found a Lyme specialist who diagnosed me with Lyme and another infection also often carried by the Lyme ticks, I would not have gotten well.
The toll that Lyme takes on daily life is enormous, and we need all the Lyme specialists we can find. On behalf of all of us who have or have had or will have Lyme, please understand that we discourage naming Lyme specialists in the open here for a very good reason. We may share the names of our Lyme docs in private messages, but not in the open.
Yes, this is totally unlike any other medical situation in the country, but it is what it is, at least for the foreseeable future, until the senior MDs who have staked their reputations on Lyme being 'hard to get and easy to cure' have retired and their successors are able to think for themselves.
There is an excellent documentary called 'Under Our Skin' that is available online, I believe, which explains what life is often like for those of us with Lyme. If you are interested, I recommend it. We do not all end up as ill as some of those shown in the film, but we are all at some level debilitated and unable to participate in family and work life.
Thank you for your understanding.
"You can also provide doctor names here, so long as you are not saying anything negative."
fyi, those of us in the Lyme world have a general policy of NOT naming doctors in public, because in quite a few states, MDs who are identified as treating Lyme disease in a way that runs contrary to the standards set by the Infectious Disease Society of America (IDSA) are too often brought up before local and state medical boards for diagnosing and treating Lyme in a manner more aggressive than the IDSA approach.
Some states have 'freedom of conscience' laws which permit MDs to practice as they see fit, but many states require MDs to practice according to specific approaches for diagnosis and treatment, on the theory that, for example, all is known that needs to be known about Lyme disease, and a few weeks of doxycycline will fix you right up; any remaining symptoms or suffering are not due to an incompletely or inadequately treated infection, but are instead the immune system's reaction to a now-vanished illness.
Unfortunately, politics has taken hold within the IDSA, and in some states, those suffering from Lyme are doomed to continue in that condition. Lyme is not an inconsequential disease, and it can even lead to death from, for example, cardiac involvement. Even when not risking life, Lyme often impairs significantly the ability to function day to day in the simplest of tasks, let along taking care of family and working.
On this site, we have an informal policy of NOT naming in public those MDs who risk their livelihoods to diagnose and treat us more aggressively, because if the Lyme specialists are cowed into silence, we will have no one to treat us.
There is a serious split in the medical community that is not anywhere near remedied, and we cannot risk losing the brave MDs who treat us as they, the MDs, believe is appropriate. I had Lyme and was virtually non-functioning in my daily life. I lost my job and was largely unable to care for my family. If I had not found a Lyme specialist who diagnosed me with Lyme and another infection also often carried by the Lyme ticks, I would not have gotten well.
The toll that Lyme takes on daily life is enormous, and we need all the Lyme specialists we can find. On behalf of all of us who have or have had or will have Lyme, please understand that we discourage naming Lyme specialists in the open here for a very good reason. We may share the names of our Lyme docs in private messages, but not in the open.
Yes, this is totally unlike any other medical situation in the country, but it is what it is, at least for the foreseeable future, until the senior MDs who have staked their reputations on Lyme being 'hard to get and easy to cure' have retired and their successors are able to think for themselves.
There is an excellent documentary called 'Under Our Skin' that is available online, I believe, which explains what life is often like for those of us with Lyme. If you are interested, I recommend it. We do not all end up as ill as some of those shown in the film, but we are all at some level debilitated and unable to participate in family and work life.
Thank you for your understanding.
Hi everyone -
I see that Drew hasn't posted again, but I wanted to make a couple of points.
Until you get your full results from your blood work, please be very careful with taking ANYTHING right now, as some of your levels are really high. Results like this could indicate a lot of things other than Lyme, and some are potentially very serious.
I hope by now you have followed up with your doctor and gotten some results, and are moving forward with a diagnosis and/or treatment plan.
In the meantime, let's all be really careful with suggesting ANYTHING to someone without a diagnosis, including natural supplements.
You can also provide doctor names here, so long as you are not saying anything negative.
Thanks,
Emily
I see that Drew hasn't posted again, but I wanted to make a couple of points.
Until you get your full results from your blood work, please be very careful with taking ANYTHING right now, as some of your levels are really high. Results like this could indicate a lot of things other than Lyme, and some are potentially very serious.
I hope by now you have followed up with your doctor and gotten some results, and are moving forward with a diagnosis and/or treatment plan.
In the meantime, let's all be really careful with suggesting ANYTHING to someone without a diagnosis, including natural supplements.
You can also provide doctor names here, so long as you are not saying anything negative.
Thanks,
Emily
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