Aa
I went to my first LLMD appointment!!!!
I saw the big guy finally! He did a thorough history and exam and concluded that my body has battled Lyme somewhat well, although slowly, and I have greatly improved over my previous state of health. However, he said he would not want to chance what would happen if I did not get treated now. He thinks that my elbow pain, anxiety issues, neuropathy - everything is all intertwined and possibly caused from Lyme. All he did was glance at my Igenex and say, "yep, there it is, you've got 39". Meaning band 39, IgM I guess. He also noted the CDC positive IgM.
He said although my co-infections testing was negative, he assumes all patients are positive with co-infections. He also said that he thinks Lyme could be an STD, as my husband is having neurological issues. The course of treatment is as follows:
Gluten-free diet (I'm not a fan, but whatever will help)
Continue on Doxy
Several labs ordered - enough that I may have to go two different days to avoid passing out
Next visit is in December. He said using the labs and seeing how I feel on the Gluten free diet, he will tailor an oral antibiotic regimen of 3-4 different types for me. He also said he'll alternate their use, like Monday Wednesday and Friday, for example. I believe this is termed "pulsing"?
He doesn't think I need IV antibiotics and I'm relieved, because he is considered to be "agressive" in treatment and uses IV readily. I have made gains in my issues, but it is still a very serious issue on a daily basis for me - pain, fasciculations, etc.
Ok guys, ironically enough, this is what happened after I left the appt. He asked several questions in the appt., like how has this affected your daily living, etc. and I answered, not much - I still go to work in pain, I do everything I would before except take hot baths, sit in jacuzzis, etc. because I can't stand the heat. After answering his questions, I felt like, "hey, I AM getting better slowly on my own, but have reached a plateau of annoying pain and twitches."
WELL, don't you know I went out in the heat to a fair, where we were walking on hot pavement (right after the appt). My feet began to burn like fire ants were biting them all over, I couldn't really hold my balance. I was teetering and looking drunk. It felt like my legs were doing alot of work to keep me upright. I told my husband I didn't think I was going to be able to walk any further. He checked on a scooter rental - $70 - no way! I said no to the scooter (this idea scares me, I feel disabled) and went to the shade and sat down for an hour. I couldn't move. I was exhausted.
This episode scared me. To add to it, my calves cramped up that night and they have been EXTREMELY sore for two days, as if I did some calf work-out. Well, it stands to reason that I couldn't feel my feet in space, b/c they were hurting so bad and I have neuropathy. So, if you can't feel your feet, you can't balance very well. Hence, my calves were doing all the work back and forth to keep my balance.
This has never happened before. Does anyone else have a similar experience? I feel fine today, other than the usual twitches and burning. I just can't get overheated, I guess?
Thanks for listening/reading!
He said although my co-infections testing was negative, he assumes all patients are positive with co-infections. He also said that he thinks Lyme could be an STD, as my husband is having neurological issues. The course of treatment is as follows:
Gluten-free diet (I'm not a fan, but whatever will help)
Continue on Doxy
Several labs ordered - enough that I may have to go two different days to avoid passing out
Next visit is in December. He said using the labs and seeing how I feel on the Gluten free diet, he will tailor an oral antibiotic regimen of 3-4 different types for me. He also said he'll alternate their use, like Monday Wednesday and Friday, for example. I believe this is termed "pulsing"?
He doesn't think I need IV antibiotics and I'm relieved, because he is considered to be "agressive" in treatment and uses IV readily. I have made gains in my issues, but it is still a very serious issue on a daily basis for me - pain, fasciculations, etc.
Ok guys, ironically enough, this is what happened after I left the appt. He asked several questions in the appt., like how has this affected your daily living, etc. and I answered, not much - I still go to work in pain, I do everything I would before except take hot baths, sit in jacuzzis, etc. because I can't stand the heat. After answering his questions, I felt like, "hey, I AM getting better slowly on my own, but have reached a plateau of annoying pain and twitches."
WELL, don't you know I went out in the heat to a fair, where we were walking on hot pavement (right after the appt). My feet began to burn like fire ants were biting them all over, I couldn't really hold my balance. I was teetering and looking drunk. It felt like my legs were doing alot of work to keep me upright. I told my husband I didn't think I was going to be able to walk any further. He checked on a scooter rental - $70 - no way! I said no to the scooter (this idea scares me, I feel disabled) and went to the shade and sat down for an hour. I couldn't move. I was exhausted.
This episode scared me. To add to it, my calves cramped up that night and they have been EXTREMELY sore for two days, as if I did some calf work-out. Well, it stands to reason that I couldn't feel my feet in space, b/c they were hurting so bad and I have neuropathy. So, if you can't feel your feet, you can't balance very well. Hence, my calves were doing all the work back and forth to keep my balance.
This has never happened before. Does anyone else have a similar experience? I feel fine today, other than the usual twitches and burning. I just can't get overheated, I guess?
Thanks for listening/reading!
Yes on the heat issue. I have a hard time tolerating heat as well.
Sounds like a good appt. and a step toward recovery.
Sounds like a good appt. and a step toward recovery.
Hi I didn't answer your ?s. He didn't elaborate on band 39. I was pretty quiet, letting him take the lead in my first visit. I mean, he's the expert and I just wanted him to ask everything he could think of and focus on the info. he needed to develop my treatment plan. As far as my symptoms, yes, the neuropathy is the absolute WORST. It will roam all over my body too, but always is in the feet no matter what.
The heat thing, yep, I don't do well with it. However, I can't stand extreme cold either. I have to be just right. I take tepid showers. Everyone is so different.
The heat thing, yep, I don't do well with it. However, I can't stand extreme cold either. I have to be just right. I take tepid showers. Everyone is so different.
Thanks so much you guys. Your comments couldn't come at a better moment. I'm just sitting here contemplating the fact that I was unable to do something I enjoy Saturday due to my Lyme. I can't explain my fear to friends and family, as it seems that they don't know what to say to me, or they may think I'm not experiencing something that serious? I don't know what is going through their mind. If I had MS, or cancer, they would immediately understand and respond, I'm sure. That is frustrating. Again, I don't want pity, just validation that this is not all in my head. I am truly a 33 year old woman who may have to ride a scooter at large events. Sorry, but I'd rather enjoy the event on a scooter rather than sit on the sidelines in misery.
It's a big step, accepting a limitation. Some days, I'm at the gym, pushing out a great workout, washing the car, going to the grocery store. The next day I may not be able to walk without a slight limp, or even think about doing anything that requires movement of my painful elbows. It's such a rollercoaster of physical changes and emotionally dealing with them. I can feel the overwhelming thoughts of a wheelchair, inability to work etc. flooding my psyche. It's not easy, and I wish those who were healthy would know what I would do to feel like them. I just watched them walk by at the fair and thought, if they only knew how lucky they are to just be walking around gingerly in those uncomfortable shoes. I can't even walk around in my most comfortable shoes!
I guess this is a little pity party day for me. This is my safe place for pity parties:) I will focus on those days that I feel fairly normal. That is my goal. I hope my treatment starts showing progress soon, I need a little boost, a little rally!
It's a big step, accepting a limitation. Some days, I'm at the gym, pushing out a great workout, washing the car, going to the grocery store. The next day I may not be able to walk without a slight limp, or even think about doing anything that requires movement of my painful elbows. It's such a rollercoaster of physical changes and emotionally dealing with them. I can feel the overwhelming thoughts of a wheelchair, inability to work etc. flooding my psyche. It's not easy, and I wish those who were healthy would know what I would do to feel like them. I just watched them walk by at the fair and thought, if they only knew how lucky they are to just be walking around gingerly in those uncomfortable shoes. I can't even walk around in my most comfortable shoes!
I guess this is a little pity party day for me. This is my safe place for pity parties:) I will focus on those days that I feel fairly normal. That is my goal. I hope my treatment starts showing progress soon, I need a little boost, a little rally!
Yay!! That's progress!!!
About the 'effect on your life' question: I think all us Lymies have learned to reduce our expectations of ourselves and have let go of whatever our normal lives used to be. Therefore when we are asked if our symptoms interfere with daily life, we are likely to say NO, because we have already given up so much of what was once our actual daily life.
It's a matter of psychological, emotional and physical survival to adjust to our limitations, but MDs don't take that into account when they ask that quicky question. The person I am now compared to the person I was 4 years ago pre-Lyme? I feel 20 years older, not just 4.
So, make a written note to take with you to the MD next time and explain to him what your answer meant, if you think it would matter in his approach to your treatment. He sounds like a splendid fellow, and I'm very happy for you to have found him!
I get twitching and calf cramping when my magnesium (Mg) is low. When I had a top-to-bottom physical recently (from an MD who doesn't believe in Lyme and so didn't test for Lyme), the only odd thing on my tests was: low Mg. I understand the only downside to supplementing is that too much Mg is diarrhea, which stops when you lower the Mg dose -- but I currently take about 140% of the minimum daily requirement of Mg, and so far, no diarrhea.
Take care of yourself, and be gentle and not overdo! Hugs!!!
About the 'effect on your life' question: I think all us Lymies have learned to reduce our expectations of ourselves and have let go of whatever our normal lives used to be. Therefore when we are asked if our symptoms interfere with daily life, we are likely to say NO, because we have already given up so much of what was once our actual daily life.
It's a matter of psychological, emotional and physical survival to adjust to our limitations, but MDs don't take that into account when they ask that quicky question. The person I am now compared to the person I was 4 years ago pre-Lyme? I feel 20 years older, not just 4.
So, make a written note to take with you to the MD next time and explain to him what your answer meant, if you think it would matter in his approach to your treatment. He sounds like a splendid fellow, and I'm very happy for you to have found him!
I get twitching and calf cramping when my magnesium (Mg) is low. When I had a top-to-bottom physical recently (from an MD who doesn't believe in Lyme and so didn't test for Lyme), the only odd thing on my tests was: low Mg. I understand the only downside to supplementing is that too much Mg is diarrhea, which stops when you lower the Mg dose -- but I currently take about 140% of the minimum daily requirement of Mg, and so far, no diarrhea.
Take care of yourself, and be gentle and not overdo! Hugs!!!
This overall sounds like good news and progress.
I am so happy that you are getting into treatment BEFORE you lose more ability.
For awhile, I was able to push through it all without the illness making a major imact on my professional life. That is a crucial window, and if you haven't missed it, hurray! (Of course, the whole mess that you [and I, and so many others] went through for a dx takes a huge personal toll, I'm not trying to trivialize that, but it is on a different level than having your public self affected.)
I also pulse, taking different meds on different days. Some docs do, others don't. Some docs (and patients) alike will tell you pulsing never works, others say it was their salvation. Such is Lyme.
For me, pulsing and using combination abx therapy has been working. At a time, I thought I'd really like to try IV but now that I'm making real progress, I'm very glad I gave the orals time. They are less $$ and less risk.
My co-infection testing through Igenex was negative, though I had a smear from Fry labs show the so-called "Bartonella-like organsim" (that seems to show up on just about everybody's smear, so I'm not sure of the merit???). But symptom-wise, I have a lot of Bart issues and respond (read: Herx!) from Bart meds. A rose by any other name...Anyway, glad he knows to not rule out the co's too quickly! Skin pain and burning feet both sound Bart-esque.
Take your experience at the fair as a warning. A lot of coping with Lyme and treatment is learning your body's cues and accepting your limitations. As I'm sure you know, a lot of time it's a balancing act that requires us to sacrifice the fun stuff for the necessities. You can't get well if you keep pushing for that impossible (but enticing) 110%.
And yes, I've had calf cramping much like you describe, especially after prolonged exertion. My heat sensitivity has improved a lot after 9.5 months (and counting) of treatment, but still occurs to some extent.
I never got comfortable with doing less, but I finally imposed it and I know it made a difference in my (ongoing) recovery. Now it is terribly exciting to start adding those extras back in and getting to enjoy so much more.
I hope you continue to make good progress with this doc. For me treatment was neither fast nor linear, often 2 steps forward, 1 step back (or worse!), but the big picture slowly gets better.
I am so happy that you are getting into treatment BEFORE you lose more ability.
For awhile, I was able to push through it all without the illness making a major imact on my professional life. That is a crucial window, and if you haven't missed it, hurray! (Of course, the whole mess that you [and I, and so many others] went through for a dx takes a huge personal toll, I'm not trying to trivialize that, but it is on a different level than having your public self affected.)
I also pulse, taking different meds on different days. Some docs do, others don't. Some docs (and patients) alike will tell you pulsing never works, others say it was their salvation. Such is Lyme.
For me, pulsing and using combination abx therapy has been working. At a time, I thought I'd really like to try IV but now that I'm making real progress, I'm very glad I gave the orals time. They are less $$ and less risk.
My co-infection testing through Igenex was negative, though I had a smear from Fry labs show the so-called "Bartonella-like organsim" (that seems to show up on just about everybody's smear, so I'm not sure of the merit???). But symptom-wise, I have a lot of Bart issues and respond (read: Herx!) from Bart meds. A rose by any other name...Anyway, glad he knows to not rule out the co's too quickly! Skin pain and burning feet both sound Bart-esque.
Take your experience at the fair as a warning. A lot of coping with Lyme and treatment is learning your body's cues and accepting your limitations. As I'm sure you know, a lot of time it's a balancing act that requires us to sacrifice the fun stuff for the necessities. You can't get well if you keep pushing for that impossible (but enticing) 110%.
And yes, I've had calf cramping much like you describe, especially after prolonged exertion. My heat sensitivity has improved a lot after 9.5 months (and counting) of treatment, but still occurs to some extent.
I never got comfortable with doing less, but I finally imposed it and I know it made a difference in my (ongoing) recovery. Now it is terribly exciting to start adding those extras back in and getting to enjoy so much more.
I hope you continue to make good progress with this doc. For me treatment was neither fast nor linear, often 2 steps forward, 1 step back (or worse!), but the big picture slowly gets better.
Hope,
Well I'm glad you finally got in to see a LLMD. He sounds like he is very good. What was his reasoning behind the band 39? Did you have it IGG or IGM? What kind of blood work did he order?
I am so sorry you felt like ****! Is the neuropathy your worst symptom? And is it just in your feet? I get the burning feet, and shins too. Sometimes my butt even burns. But I do think this has gotten a bit better since being on treatment. It may be coincidence though since my symptoms come and go any way.
I am the complete opposite though when it comes to heat. I feel better in the heat. From what I've read I think I'm outnumbered on this one. The hot bath, sitting in the hot sun, you name it... i feel better. Weird.
As far as twitching goes... I get that a lot too. I hate that one. Annoying,
Well I hope you get to feeling better.
Keep us informed.
Well I'm glad you finally got in to see a LLMD. He sounds like he is very good. What was his reasoning behind the band 39? Did you have it IGG or IGM? What kind of blood work did he order?
I am so sorry you felt like ****! Is the neuropathy your worst symptom? And is it just in your feet? I get the burning feet, and shins too. Sometimes my butt even burns. But I do think this has gotten a bit better since being on treatment. It may be coincidence though since my symptoms come and go any way.
I am the complete opposite though when it comes to heat. I feel better in the heat. From what I've read I think I'm outnumbered on this one. The hot bath, sitting in the hot sun, you name it... i feel better. Weird.
As far as twitching goes... I get that a lot too. I hate that one. Annoying,
Well I hope you get to feeling better.
Keep us informed.
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
