Aa
New in Lyme, in need of help please!!!
Hi everyone! I received a phone call today from my GI and after I have been struggling with so many health issues for more than 5 months, from neurological to muscle pain and fatigue etc etc.., finally they told me I was positive in my blood test for Lyme, part of me I was feeling relieve after so many doctors visits and people telling it was all in my head that at least somedoby put a name in all my pain, but to be honest Im very very scared, I don't know what to do next, Im extremely confuse, and I don't have any health insurance so im pretty much in a black hole case, so if you are dealing with Lyme can you share the light with me on this illness, maybe how bad it is, and what to do, I would appreciate any info or help or advice that you guys can give me and also, it is true that it cost a lot of money to treat?? I don't feel real real bad right now but it is true that when you start the medication your start getting worse??, I want to know what to expect to be prepare to fight this thing one way or another, even though I feel really scared I want to be ready for all the lemons that this disease is going to throw on me! I don't know what to do guys, I feel very sad and confuse at this moment, Im hoping that somebody in this forum can help me because Im walking totally blind in this disease. Somebody told my husband that with 2 weeks of antibiotics you start feeling better and then I read in internet that is not true! plus im allergic to penicillin I don't know if that matters. anyway Thanks in advance for you all advices.
I'll add my two cents: There are various drugs that can treat Lyme. Tell your doctor you're paying out of pocket, so you want to start with the lower cost generic drugs. Makes a big difference!
I hope you start feeling better soon!
I hope you start feeling better soon!
You're quite welcome -- we've all been through it too, so we hear you. Take care, and keep us posted.
Thank you guys for your repiles! Jackie thank you for the advices I would make sure I have copies of all my tests. and yes you are right its not club I would wish to be in! so hopefully you, me and all the people taht suffers from this disease we can join the I got rid of Lyme club! Im looking for a LLMD to start treatment and have the co-infection test too, I don't know much about Lyme but sure I need to educate myself to see what kind of disease im going to face. At this moment im feeling worse than ever, my stomach hurts, my whole body, and my throat get so tight and cant barely drink water, its awful! Thank you Murphgolf! for the good wishes and hope, I wish you the same for you too!! Mojogal, Thank you, It took you so long to bit this disease but im so happy that you are the hope for most of us that after this nightmare it's a cure! and sooner or later we will feel humans again! Im very happy for ypu! Thank you guys for you all replies this is so new to me and I dnt know anything about it so im sure you guys would see this confused girl around! Huge hugs!
I am on my 3rd year of treatment and finally starting to feel human. It is worth it!
Have been through the same thoughts as you about Lyme Disease. It is tough financially, but as Jackie mentioned in different words, spending it onh your health is a good reason to spend it. The truth I had to realize is I have no choice. That doesn't make it easier, but getting better is a worthy goal.
Hope things go well for you, and while it is a long, learning journey, there is hope. Lean on that hope. It's what keeps me going.
Hope things go well for you, and while it is a long, learning journey, there is hope. Lean on that hope. It's what keeps me going.
Hi back at you!
Actually, I would like to say congratulations, because you HAVE a diagnosis. That is the first step to getting well, tho congratulating some who is ill sounds strange, huh. But when I got my diagnosis, I was relieved to finally put a name on it.
Be SURE you get your own set of copies of all your test results, and keep them starting now and until you're well. The road to getting rid of Lyme often winds through many docs' offices, and what doesn't interest some docs in a set of test results could REALLY useful to another doc with a different point of view. A big three ring binder is a handy thing to have.
Once I was diagnosed, it took a load off me, because at last I knew what I was fighting. So I hear you. You go!
About health insurance, I don't know how the new insurance systems work, but maybe you can still sign up? Someone else can speak to that point. There are also Lyme charities that can help with the cost of treatment. One is called LymeLight Foundation and the other one that is often mentioned is slipping my mind. I just searched on google for -- lyme charity -- and got lots of hits -- so check it out. If you're not feeling up to it, ask a friend to help. (You'll see there are lots of charities in the UK that relate to Lyme, so we're not alone, but you might want to skip over those.)
It's not cheap to treat Lyme, but what else is worth spending money on, you know? Try not to worry; you'll figure it out. It was the best money I ever spent. You mentioned you have a hubby, I think, so enlist him in helping you research the possibilities for financial aid etc. You'll figure it out.
You ask, is it "true that when you start the medication your start getting worse??" Well, sometimes for a while -- but nothing to be scared of. It's called a Herxheimer reaction, or Herx for short, and it means that when the meds are killing the bacteria, the bacteria release their toxins into your body, and you feel lousy for a little while, not too long, maybe a day or two as I recall, but I never felt worse ON the meds than I did before I started taking them. Everybody is a little different. Call your doc if it seems intolerable or scary.
We here were once all new to Lyme too, so we know how you feel, but getting the diagnosis is the first important step, and now you know what you're fighting. It may not feel like it yet, but this definitely PROGRESS.
One thing to consider is taking magnesium supplements, if not now, then later, but always tell your doc everything incl. vits and supps that you are taking so s/he can factor it in to your situation. The Lyme bacteria use up magnesium (Mg) and it can leave you aching and feeling lousy but is not the actual disease itself. I still take Mg every day now, since I read that the American diet is often low in Mg. Some docs are indifferent to vits and supps, but I found they helped me a lot. You'll figure it out, no need to rush out and buy a bunch of stuff. You can also take Epsom salt baths or footsoaks; Epsom salts ARE Mg, and it soaks in through your skin. Taking too much Mg by mouth can give you diarrhea, but if that happens, then I'd reduce the dose till it was enough but not too much. You'll figure it out. Start slow, work up.
"Somebody told my husband that with 2 weeks of antibiotics you start feeling better" -- well, not usually, but maybe. Depends partly on how long you've been sick and how many co-infections you've got. Everybody is different Slow and steady as it goes, but the first thing is the diagnosis.
Did they test you for other infections the "lyme" ticks often carry as well? Many of us have one or more of these co-infections, and they usually need separate diagnosis, testing and treatment. Your Lyme doc will know all about this. Not to worry.
Penicillin is not, to my knowledge, used in Lyme treatment, but be sure your docs know about ALL your allergies etc.
So welcome to a club you never wanted to belong to! But the good news is that you will be eligible for the "I GOT RID OF LYME" club in due course. :) Lyme takes time to kill, partly because it has a slow reproductive cycle, and it is when dividing that the bacteria are most vulnerable to the antibiotics, so it was months of treatment for me, but I also had a co-infection. It is what it is, just know that you are on your way.
Keep us posted. It's a good group here. Take care!
Actually, I would like to say congratulations, because you HAVE a diagnosis. That is the first step to getting well, tho congratulating some who is ill sounds strange, huh. But when I got my diagnosis, I was relieved to finally put a name on it.
Be SURE you get your own set of copies of all your test results, and keep them starting now and until you're well. The road to getting rid of Lyme often winds through many docs' offices, and what doesn't interest some docs in a set of test results could REALLY useful to another doc with a different point of view. A big three ring binder is a handy thing to have.
Once I was diagnosed, it took a load off me, because at last I knew what I was fighting. So I hear you. You go!
About health insurance, I don't know how the new insurance systems work, but maybe you can still sign up? Someone else can speak to that point. There are also Lyme charities that can help with the cost of treatment. One is called LymeLight Foundation and the other one that is often mentioned is slipping my mind. I just searched on google for -- lyme charity -- and got lots of hits -- so check it out. If you're not feeling up to it, ask a friend to help. (You'll see there are lots of charities in the UK that relate to Lyme, so we're not alone, but you might want to skip over those.)
It's not cheap to treat Lyme, but what else is worth spending money on, you know? Try not to worry; you'll figure it out. It was the best money I ever spent. You mentioned you have a hubby, I think, so enlist him in helping you research the possibilities for financial aid etc. You'll figure it out.
You ask, is it "true that when you start the medication your start getting worse??" Well, sometimes for a while -- but nothing to be scared of. It's called a Herxheimer reaction, or Herx for short, and it means that when the meds are killing the bacteria, the bacteria release their toxins into your body, and you feel lousy for a little while, not too long, maybe a day or two as I recall, but I never felt worse ON the meds than I did before I started taking them. Everybody is a little different. Call your doc if it seems intolerable or scary.
We here were once all new to Lyme too, so we know how you feel, but getting the diagnosis is the first important step, and now you know what you're fighting. It may not feel like it yet, but this definitely PROGRESS.
One thing to consider is taking magnesium supplements, if not now, then later, but always tell your doc everything incl. vits and supps that you are taking so s/he can factor it in to your situation. The Lyme bacteria use up magnesium (Mg) and it can leave you aching and feeling lousy but is not the actual disease itself. I still take Mg every day now, since I read that the American diet is often low in Mg. Some docs are indifferent to vits and supps, but I found they helped me a lot. You'll figure it out, no need to rush out and buy a bunch of stuff. You can also take Epsom salt baths or footsoaks; Epsom salts ARE Mg, and it soaks in through your skin. Taking too much Mg by mouth can give you diarrhea, but if that happens, then I'd reduce the dose till it was enough but not too much. You'll figure it out. Start slow, work up.
"Somebody told my husband that with 2 weeks of antibiotics you start feeling better" -- well, not usually, but maybe. Depends partly on how long you've been sick and how many co-infections you've got. Everybody is different Slow and steady as it goes, but the first thing is the diagnosis.
Did they test you for other infections the "lyme" ticks often carry as well? Many of us have one or more of these co-infections, and they usually need separate diagnosis, testing and treatment. Your Lyme doc will know all about this. Not to worry.
Penicillin is not, to my knowledge, used in Lyme treatment, but be sure your docs know about ALL your allergies etc.
So welcome to a club you never wanted to belong to! But the good news is that you will be eligible for the "I GOT RID OF LYME" club in due course. :) Lyme takes time to kill, partly because it has a slow reproductive cycle, and it is when dividing that the bacteria are most vulnerable to the antibiotics, so it was months of treatment for me, but I also had a co-infection. It is what it is, just know that you are on your way.
Keep us posted. It's a good group here. Take care!
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