Aa
Being broke must be a death sentance
I have diagnosed myself with Chronic Lyme disease. I have absolutely no idea how long I have had it, but it seems to be effecting my brain. LLMD's do not take medicaid and I cannot afford them! I went to a random doctor for the first time in decades, and told him my suspicions. He then ordered an ELISA because there was apparently no other options. It's been over a week and I haven't heard anything so I suppose it was negative. I can't stand doctors! Why? Because everything always comes back normal! What happens when blood work comes back normal? I get dismissed. I don't play!! I don't enjoy hanging out at a doctors office like some people do. So I'm considering starting my own treatment. Does anyone have a medical treatment protocall they got from an LLMD? It would be MUCH cheaper to order my own antibiotics online than it would trying to get a proper diagnoses. I highly doubt that a regular doctor would even consider 2 or 3 years worth of antibiotics anyways.
The antibiotics for Lyme should knock out any co-infections too wouldn't they?
Thanks!
The antibiotics for Lyme should knock out any co-infections too wouldn't they?
Thanks!
Thanks Ricobord! I've kinda noticed all the secondary possibilities of Lyme just by searching around. If I could only determine the secondary cause of my debilitating fatigue and temporarily fix that then I would be getting much further to Lyme dx and treatment. But it didn't take long to realize that there are so many possibilities and co-possibilities of the fatigue, it's just not possible to make that determination.
I'm deteriorating fast, so sorry if my writing is off or don't make sense. One thing I never wanted to lose is my brain function. I just hope there's enough left to communicate with a doctor or there's going to be some serious issues.
I really don't know where I'm getting calcium from but I must be getting it from somewhere courtesy of my lab values, which revealed me in the upper range. I must be getting plenty of it from cheese, because that's the only real source of calcium I consume. It's not a whole lot though and it's not necessarily on a daily basis either so IDK.
I did google various words concerning 'protruding calvarial cyst' and such years ago but I actually found many possibilities. If I knew for sure what they were, then I may be able to make that connection. I refuse to except that they are calcified cyst. There are so many likewise possibilities, I don't see how they could make that determination just by CT appearance.
You have an interesting history! Which treatment took 9 months to get a herx and how long did that one last? I actually fear herxheimer reactions but at the same time, I'd look forward to it as confirmation that treatment is working - just like you said. I'm the only one my kids have to rely on, so hopefully it's not too rough.
I'm deteriorating fast, so sorry if my writing is off or don't make sense. One thing I never wanted to lose is my brain function. I just hope there's enough left to communicate with a doctor or there's going to be some serious issues.
I really don't know where I'm getting calcium from but I must be getting it from somewhere courtesy of my lab values, which revealed me in the upper range. I must be getting plenty of it from cheese, because that's the only real source of calcium I consume. It's not a whole lot though and it's not necessarily on a daily basis either so IDK.
I did google various words concerning 'protruding calvarial cyst' and such years ago but I actually found many possibilities. If I knew for sure what they were, then I may be able to make that connection. I refuse to except that they are calcified cyst. There are so many likewise possibilities, I don't see how they could make that determination just by CT appearance.
You have an interesting history! Which treatment took 9 months to get a herx and how long did that one last? I actually fear herxheimer reactions but at the same time, I'd look forward to it as confirmation that treatment is working - just like you said. I'm the only one my kids have to rely on, so hopefully it's not too rough.
Good point. "Easing in" to me usually means over a few days, not weeks. But it is still a good idea to mention it to the prescribing doc.
When I was first prescribed Malarone, they forgot to tell me to ease in to it. I took the full dose the first night and the next day around noon my brain and body just shut down. I ended up lying on the floor for 1/2 hour before I could get up with help and stumble to bed for the rest of the day. Before that, the docs told me which things needed to be started slowly. But it only took 1 "oops" for me to take ownership of asking that question!
When I was first prescribed Malarone, they forgot to tell me to ease in to it. I took the full dose the first night and the next day around noon my brain and body just shut down. I ended up lying on the floor for 1/2 hour before I could get up with help and stumble to bed for the rest of the day. Before that, the docs told me which things needed to be started slowly. But it only took 1 "oops" for me to take ownership of asking that question!
I would be careful about easing into ALL meds ... does that are less than lethal to the bacteria gives them a chance to mutate and survive, now immune to the particular antibiotic. I would confirm with the doc how to stage such an approach, or if it is not a good idea, even with significant side effects.
Sorry...don't know anything about calcified cysts. But there are so many secondary and tertiary issues that can come up with a long term Lyme infection, it's probably impossible to list them all. Lyme throws multiple symptoms out of whack, and strange things can happen that aren't really considered Lyme symptoms. I think if I were you, I'd cut back on excess calcium for now. You don't want a shortage, but you might not want supplements either.
What I would do is to google "Lyme" and a word or two describing a symptom. When I learned I had a big liver cyst, I googled "Lyme liver" and learned that there is a relationship. It encouraged me in that it didn't exclude Lyme as the cause of my many symptoms, and also that I didn't have a separate liver condition!
I didn't any wild herxheimer reactions until about 9 months into treatment. My doc starts out slow in order to avoid strong herxes. He doesn't think it helps a patient to make them much sicker. I had a strong pain response to my first Bicillin shot about 6 weeks in. It made my rib pain and stomach pain (two of my top few problems) much worse for a couple days. I could barely walk. Then it eased up and I felt ready for the next shot on the 4th day. It almost made me happy to have a reaction as that meant is was working. "Die, bugs, Die!" became my mantra when I hurt.
I had a significant reaction to Clindamycin, an intracellular abx. It made me feel miserable with malaise, severe fatigue, severe brain fog, headache, inability to focus or even do much of anything. It lasted a bit less than a day, but took several days to fully get out of it.
Later, I had a bad herx when I started Malarone for Babesia. The office forgot to tell me to ease into the dose, so I took 3 pills the first night. The next day, it was like someone shut my brain down. I had about five minutes warning of headache and dizzyness, and then I had to abruptly lie down on the floor. I couldn't get up or speak more than a few words for about a half hour. My husband took one look at me and said, "Did you start a new medication?" I spent the rest of the day in bed like a breathless zombie. I had zero doubt that I had Babesia after that. After that, it took me a month to ease up to the 3 pill dose.
Since then, I ease in to every new med I take, including anti-bacterial supplements, whether I am instructed to or not.
What I would do is to google "Lyme" and a word or two describing a symptom. When I learned I had a big liver cyst, I googled "Lyme liver" and learned that there is a relationship. It encouraged me in that it didn't exclude Lyme as the cause of my many symptoms, and also that I didn't have a separate liver condition!
I didn't any wild herxheimer reactions until about 9 months into treatment. My doc starts out slow in order to avoid strong herxes. He doesn't think it helps a patient to make them much sicker. I had a strong pain response to my first Bicillin shot about 6 weeks in. It made my rib pain and stomach pain (two of my top few problems) much worse for a couple days. I could barely walk. Then it eased up and I felt ready for the next shot on the 4th day. It almost made me happy to have a reaction as that meant is was working. "Die, bugs, Die!" became my mantra when I hurt.
I had a significant reaction to Clindamycin, an intracellular abx. It made me feel miserable with malaise, severe fatigue, severe brain fog, headache, inability to focus or even do much of anything. It lasted a bit less than a day, but took several days to fully get out of it.
Later, I had a bad herx when I started Malarone for Babesia. The office forgot to tell me to ease into the dose, so I took 3 pills the first night. The next day, it was like someone shut my brain down. I had about five minutes warning of headache and dizzyness, and then I had to abruptly lie down on the floor. I couldn't get up or speak more than a few words for about a half hour. My husband took one look at me and said, "Did you start a new medication?" I spent the rest of the day in bed like a breathless zombie. I had zero doubt that I had Babesia after that. After that, it took me a month to ease up to the 3 pill dose.
Since then, I ease in to every new med I take, including anti-bacterial supplements, whether I am instructed to or not.
Wow! Isn't that interesting! Everything you've mentioned fits perfectly! The anxiety and paranoia is unbelievable and the irritability and rage usually has a trigger but it's such a relief to know that all of these things may diminish with treatment. Did you have any wild heximer reactions from the treatments?
I could have had this for much longer than I originally suspected. So can an LLMD can tell from the western blot IgM and/or IgG results approximately how long the infection has been present? Or just chronic vs acute infection? I read that kids can be born with it, so that's concerning.
There is one piece of the puzzle that I cannot seem to tie in with anything. And that's these growing nodules on my head. They've been very slowly growing and multiplying over the past 10 years. I was told they were calcified cyst but I can't seem to wrap my mind around growing calcified cyst. I seen the CT and there are quite a few of them. Even though they appear to be superficial, there must be a cause. They've kind of been growing and multiplying with the gradual decline of my health.
Much thanks Ricobord :)
I could have had this for much longer than I originally suspected. So can an LLMD can tell from the western blot IgM and/or IgG results approximately how long the infection has been present? Or just chronic vs acute infection? I read that kids can be born with it, so that's concerning.
There is one piece of the puzzle that I cannot seem to tie in with anything. And that's these growing nodules on my head. They've been very slowly growing and multiplying over the past 10 years. I was told they were calcified cyst but I can't seem to wrap my mind around growing calcified cyst. I seen the CT and there are quite a few of them. Even though they appear to be superficial, there must be a cause. They've kind of been growing and multiplying with the gradual decline of my health.
Much thanks Ricobord :)
Sorry for the delay in response. I've been out of town.
Regarding your question about panic attacks and not getting along with people, those are both known symptoms of Lyme. Anxiety to the point of panic attacks is documented. Even the doctors in the American Psychiatric Association has published articles and had conference talks on this issue.
There's also "Lyme rage", which can come and go. It's an extreme form of the very common irritability that comes along with Lyme. I've definitely had that. My poor husband and daughter bore the brunt of my irritability when I was at my worst. Irritability & anxiety combined are especially effective at driving other people away from us, not to mention reason for doctors to write us off as psych cases.
I didn't realize that I also had a chronic sense of doom for a few months before treatment until Youvegottobekidding mentioned that she had this as well. I didn't quite realize it was a symptom, although I can't remember if it's from Lyme or Bart. For a couple months I was sure my husband was going to die in an accident everytime he went off to work, which involved travel. I didn't want to tell anyone at the time, as I didn't want to be right. I'm relieved now to know it was caused by the infections, and that I'm not actually a paranoid pessimest.
In my case, the anxiety was from Bartonella. My anxiety dropped way down after a few months of meds for Bart. I luckily tested positive for Bartonella Henselae antibodies at IGeneX.
Regarding your question about panic attacks and not getting along with people, those are both known symptoms of Lyme. Anxiety to the point of panic attacks is documented. Even the doctors in the American Psychiatric Association has published articles and had conference talks on this issue.
There's also "Lyme rage", which can come and go. It's an extreme form of the very common irritability that comes along with Lyme. I've definitely had that. My poor husband and daughter bore the brunt of my irritability when I was at my worst. Irritability & anxiety combined are especially effective at driving other people away from us, not to mention reason for doctors to write us off as psych cases.
I didn't realize that I also had a chronic sense of doom for a few months before treatment until Youvegottobekidding mentioned that she had this as well. I didn't quite realize it was a symptom, although I can't remember if it's from Lyme or Bart. For a couple months I was sure my husband was going to die in an accident everytime he went off to work, which involved travel. I didn't want to tell anyone at the time, as I didn't want to be right. I'm relieved now to know it was caused by the infections, and that I'm not actually a paranoid pessimest.
In my case, the anxiety was from Bartonella. My anxiety dropped way down after a few months of meds for Bart. I luckily tested positive for Bartonella Henselae antibodies at IGeneX.
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I don't think there's an absolute answer to your question, because a short term course of antibiotics can actually help trigger more antibody production as dead spirochetes hit the blood stream. This scenario actually increases antibody production in the immediate term. This is called an antibiotic challenge, done before a Western Blot test, which tries to provoke enough antibodies to show up on the test.
Insufficient courses of antibiotics can leave the tougher-to-kill bugs behind. The spirochetes can hide their surface proteins, which is what the antibodies look for. They curl up into ring forms like a hedgehog curls up in a ball for protection. They also form biofilms to hide in.
In my case, I took insufficient antibiotics when I first got infected. After a week of abx, I got better. Then, I had a relapsing/remitting cycle for nearly 5 years. Once or twice a year I would have "attacks" of severe fatigue, malaise, headache, and loss of appetite. They'd last 1-3 weeks and then go away. The little buggers would go dormant for up to a year! I thought they were relapses of a bad case of mono (epstein barr) from years earlier.
So who knows what effect past courses of antibiotics have had on you. They could certainly interfere with antibody production. Also, Lyme itself can be immunosuppressive. That was the case with me. Twelve to eighteen months ago, I had no allergies, despite a life long history. Blood tests even showed I had no allergies anymore. A general IgM/IgG count showed my immune system was at the low end of "normal." I was really sick with Lyme, Bartonella, and Babesia at that time. My immune system wasn't putting up much of a fight.
This spring, now that Bartonella is gone and Lyme is nearly gone, I am definitely suffering with allergies. Yes, they're back. I am convinced it's because my immune system was suppressed last spring. This year, my immune system is back to overreacting to certain pollens, which is normal for me.
The only doctors familiar with this nightmarish complexity of Lyme are experienced LLMDs. It's rare to find a doctor who isn't clueless about the testing. They trust that the microbiologists who designed the tests and the interpretation know what they're doing. In the case of Lyme, this is a tragically wrong assumption.