Aa
A Friend
A friend of mine told us recently that she has lyme disease. We were all kind of worried about her, but then she started claiming some really strange stuff that we're pretty sure isn't true. She says that she's the first person ever diagnosed with lyme disease in the state of texas, and that the doctor said she will probbaly die within 5 years. We were all wondering if this is true, or if maybe something is fishy as it seems. She is taking Cyanocobalamin(injections which kind of wierded us out), Doxycycline, Nystatin and Azithromycin. I know we are being nosy a bit, but I am scared for her roomate. If she has something else (something that could actually kill her but she is embarrassed to tell us) then the girl she shares a room with deserves to know. I'm not accusing her of anything...it all just seems wierd. Has anyone taken this combo of medicines for lyme disease? Anyone have any ideas on this whole situation?
Thank you for the kind words, but I'm in the same place as everyone else here -- it helps me enormously to come here and know I will be heard and understood. It means a LOT and is the place I come for comfort and understanding. Thank you, everyone.
I was reading through the blogs above and just want to say that most of the members on this forum are so knowledgeable and helpful, especially jackiecalifornia and patsy and wonko! I really appreciate it.
Wonko,
I am sure that this post will help someone. Most of them have helped me as well as many others here on this forum. Again, I wonder if the poster's friend ever got better? I too found Medhelp when I was googling my symptoms and thankfully I was able to find a group of people who were going through the exact same thing. Sometimes I wish people would stick around so that we could get updated on how they are coming along with their treatment. We can all learn from each other!
I am sure that this post will help someone. Most of them have helped me as well as many others here on this forum. Again, I wonder if the poster's friend ever got better? I too found Medhelp when I was googling my symptoms and thankfully I was able to find a group of people who were going through the exact same thing. Sometimes I wish people would stick around so that we could get updated on how they are coming along with their treatment. We can all learn from each other!
way to read the dates! I should give it a try!
I found MedHelp when I was googling about my situation. Even if the original poster isn't still around, you never know who will come along and see what was said. Hopefully it will be of use to someone, somewhere!
I found MedHelp when I was googling about my situation. Even if the original poster isn't still around, you never know who will come along and see what was said. Hopefully it will be of use to someone, somewhere!
Your post said: "The apparent lying is what got us worried in the first place. What would be her symptoms if she did have lyme disease?"
Your friend may not have been 'lying', but just confused. You know those movies that try to show what someone who has had a drink spiked with drugs is experiencing -- swirling lights and sounds and noises and not being able to make sense of it? Well, my Lyme wasn't quite that fancy, but the confusion factor certain rings true. Memory was severely affected, as well as reasoning ability and mood. Anxiety and fear to the edge of paranoia (especially when doctor after doctor doesn't believe there's anything wrong with you) can lead you to believe you might die -- you know how sick you are, but no one else will acknowledge it.
Your friend said she might die in five years? Well, I rewrote my will and my health care power of attorney during the time I was ill but before I found my way to an LLMD -- I too believed I was about to die. I had been in the ER twice with severe heart irregularities, and the best my doctor could do was double my hormone pills and ask if I had restless leg syndrome (he wanted to try out a new drug on me). When you are that ill and no one takes it seriously, death is very much in the front of the mind. If your friend said the doctor said she might die and was the first person in Texas to have Lyme, she may have misunderstood (likely); misremembered (likely); or had a jerky doctor who believes there is no Lyme in Texas (regrettably not unlikely).
Wonko is right: your friend is blessed to have you be concerned enough to inquire. Do what you can for her -- if she's like I was, simply getting organized enough to go to the store for food is sometimes beyond one's capabilities.
Symptoms of Lyme are extremely variable, which is one reason it is so hard to diagnose. Some people get it in the body but not the brain, some get it in the brain too (neuroborreliosis). Your friend needs an LLMD, a Lyme-literate medical doctor, which is not a degree or license, it is simply a point of view about the nature of Lyme and its treatment. There is INTENSE controversy over appropriate treatment, with standard medicine thinking it's like the common cold. In fact, Lyme has much in common with syphilis, in that it's caused by a spirochetal bacterium and can turn your brain into Swiss cheese. "Under Our Skin" tells it well.
My biggest symptoms, fwiw, were confusion, significant bone and joint pain, heart palpitations, short-term memory loss, disordered thinking, inability to organize, lethargy, anxiety, fear, and extreme irritability.
Your friend may not have been 'lying', but just confused. You know those movies that try to show what someone who has had a drink spiked with drugs is experiencing -- swirling lights and sounds and noises and not being able to make sense of it? Well, my Lyme wasn't quite that fancy, but the confusion factor certain rings true. Memory was severely affected, as well as reasoning ability and mood. Anxiety and fear to the edge of paranoia (especially when doctor after doctor doesn't believe there's anything wrong with you) can lead you to believe you might die -- you know how sick you are, but no one else will acknowledge it.
Your friend said she might die in five years? Well, I rewrote my will and my health care power of attorney during the time I was ill but before I found my way to an LLMD -- I too believed I was about to die. I had been in the ER twice with severe heart irregularities, and the best my doctor could do was double my hormone pills and ask if I had restless leg syndrome (he wanted to try out a new drug on me). When you are that ill and no one takes it seriously, death is very much in the front of the mind. If your friend said the doctor said she might die and was the first person in Texas to have Lyme, she may have misunderstood (likely); misremembered (likely); or had a jerky doctor who believes there is no Lyme in Texas (regrettably not unlikely).
Wonko is right: your friend is blessed to have you be concerned enough to inquire. Do what you can for her -- if she's like I was, simply getting organized enough to go to the store for food is sometimes beyond one's capabilities.
Symptoms of Lyme are extremely variable, which is one reason it is so hard to diagnose. Some people get it in the body but not the brain, some get it in the brain too (neuroborreliosis). Your friend needs an LLMD, a Lyme-literate medical doctor, which is not a degree or license, it is simply a point of view about the nature of Lyme and its treatment. There is INTENSE controversy over appropriate treatment, with standard medicine thinking it's like the common cold. In fact, Lyme has much in common with syphilis, in that it's caused by a spirochetal bacterium and can turn your brain into Swiss cheese. "Under Our Skin" tells it well.
My biggest symptoms, fwiw, were confusion, significant bone and joint pain, heart palpitations, short-term memory loss, disordered thinking, inability to organize, lethargy, anxiety, fear, and extreme irritability.
Well said, my friend.
You are exactly right about the up and down, recurring, remitting, and relapsing course of the disease. It is a crushing blow to have symptoms rise up again; not just in the misery of the symptoms, but that one of the direct effects of the disease is mood alteration and depression. The ole double whammy.
You are exactly right about the up and down, recurring, remitting, and relapsing course of the disease. It is a crushing blow to have symptoms rise up again; not just in the misery of the symptoms, but that one of the direct effects of the disease is mood alteration and depression. The ole double whammy.
just curious , you did not mention in what way your friend has been showing symptoms, ie; pain, fatigue , depression, etc; - or have I missed a post?
I do agree that whatever is wrong being supportive is the best thing you can do.
I can also relate to the fact that Lyme and co-infections can cause changes in behavior and thinking harmful to personal relationships. Your friend may not be intentional or malicious, but simply confused, paranoid, and scared. JackieCalifornia's general description of a deep flu mixed with a sever hangover is pretty much on the money. I don't know how long your friend has been sick, but imagine the fallout such a state, endured perpetually for the months or even years many patients go undiagnosed, would have on thinking and personality. At times, I thought that I would die, or that my life must have been shortened by my illness. Now that I am nearly four months into my recovery, I'm much more optimistic.
I am not on the same combination of meds that you list (though I have zithro in common), but I have been taking high doses of 3 (or 4, since one pill is a combination of 2) antibiotics in a pulsed schedule (I change meds every other day), along with supplements. I understand how bizarre that must seem to others, and I know that even other patients on forums such as this don't agree with such regimens involving so many antibiotics for so long. However, it is working for me. I was disabled, unable to stay out of bed for more than a few hours, and unable to think clearly enough to function professionally.
A final comment is that treatment, at least in my case, was not a straight-forward, monotonic improvement to wellness. The first month brought little relief, mainly just more variation in my day-to-day symptoms. The second month had me going through mood swings that scared even me, and I had invaluable support from loved ones during that time. The third month marked when I finally started to feel lasting improvement (as opposed to fleeting relief and manic moods). At almost 4 months, I'm still dealing with enough symptoms to have a constant reminder of my Lyme.
With Lyme, it seems that each patient is affected differently and also has a unique experience with treatment, but hopefully my example gives you some idea of what is possible.
I wholeheartedly second JackieCalifornia's suggestions to openly discuss your concerns with your friend in a supportive way and to offer to help with the seemingly simple, but actually overwhelming aspects of patients life. Resources I found to be of great help in terms of both information and patient experience were the documentary "Under Our Skin" and the book "Cure Unknown," each has a website with lots more info.
I lost or injured many friendships with my illness, I appreciate your taking the time to try and learn more and to be of help to your friend.
I am not on the same combination of meds that you list (though I have zithro in common), but I have been taking high doses of 3 (or 4, since one pill is a combination of 2) antibiotics in a pulsed schedule (I change meds every other day), along with supplements. I understand how bizarre that must seem to others, and I know that even other patients on forums such as this don't agree with such regimens involving so many antibiotics for so long. However, it is working for me. I was disabled, unable to stay out of bed for more than a few hours, and unable to think clearly enough to function professionally.
A final comment is that treatment, at least in my case, was not a straight-forward, monotonic improvement to wellness. The first month brought little relief, mainly just more variation in my day-to-day symptoms. The second month had me going through mood swings that scared even me, and I had invaluable support from loved ones during that time. The third month marked when I finally started to feel lasting improvement (as opposed to fleeting relief and manic moods). At almost 4 months, I'm still dealing with enough symptoms to have a constant reminder of my Lyme.
With Lyme, it seems that each patient is affected differently and also has a unique experience with treatment, but hopefully my example gives you some idea of what is possible.
I wholeheartedly second JackieCalifornia's suggestions to openly discuss your concerns with your friend in a supportive way and to offer to help with the seemingly simple, but actually overwhelming aspects of patients life. Resources I found to be of great help in terms of both information and patient experience were the documentary "Under Our Skin" and the book "Cure Unknown," each has a website with lots more info.
I lost or injured many friendships with my illness, I appreciate your taking the time to try and learn more and to be of help to your friend.
If your friend has neurological Lyme, her ability to think and reason may well be impaired. I was very ill with Lyme and a co-infection, and I was not very rational sometimes but not able to do much about it. Moodiness, irritability, lack of decent sleep, physical pain, fear -- all of these can be part of Lyme. Your friend may be suffering in that way.
I'm sure it's concerning for you and for the roommate -- may I make a suggestion, based on nothing but your email (and therefore perhaps totally off the mark)? A couple of you sit down with her and say you've been doing some research to understand better about Lyme, and you want to be supportive of her, so if she needs a ride to the doctor or would like a companion to go with her to the appointment and sit in, you would do that -- short term memory and reasoning can be warped in Lyme, and you might have a better idea of what is going on for your own information and to help your friend if you are involved.
If you are not that close and don't want to get more involved, then suggest to her that she find a support group or a family member to help. Simply organizing doctor's appointments and paying bills and taking medicine can be overwhelming. Lyme (and a co-infection) for me was like having a really bad case of the bone-ache flu and a bad hangover at the same time: I hurt, I was ill, I was mentally out of it and couldn't reason my way out a phone booth. It would have been a blessing to have a friend to help me.
Good luck to you all, let us know how it goes.
I'm sure it's concerning for you and for the roommate -- may I make a suggestion, based on nothing but your email (and therefore perhaps totally off the mark)? A couple of you sit down with her and say you've been doing some research to understand better about Lyme, and you want to be supportive of her, so if she needs a ride to the doctor or would like a companion to go with her to the appointment and sit in, you would do that -- short term memory and reasoning can be warped in Lyme, and you might have a better idea of what is going on for your own information and to help your friend if you are involved.
If you are not that close and don't want to get more involved, then suggest to her that she find a support group or a family member to help. Simply organizing doctor's appointments and paying bills and taking medicine can be overwhelming. Lyme (and a co-infection) for me was like having a really bad case of the bone-ache flu and a bad hangover at the same time: I hurt, I was ill, I was mentally out of it and couldn't reason my way out a phone booth. It would have been a blessing to have a friend to help me.
Good luck to you all, let us know how it goes.
Yea, I looked all of that up. I also know someone who had lyme disease and got it in texas. The apparent lying is what got us worried in the first place. What would be her symptoms if she did have lyme disease?
The injections are vitamin B12 so that's not so scary. People with lyme often take that combination of medications. Lyme is debilitating but rarely fatal. There are cases of lyme all over the country over many years. I know of more than one person in Texas who has it. If you go to lymenet.org you will see there are several people from texas posting on the site. I think (but I'm not sure) the Lone Star tick is more common in Texas than the deer tick and can cause a lyme-like illness called STARI. This disease cannot be tested for. LS tick causes lyme too. You can research a lot of info. on lyme at the site I posted.
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