Trying again: lyme disease resources?

[Halftime Hope]

I've done some poking around online on my own, but for those with an interest in lyme disease, please share your best resources for educating oneself about lyme, about treatments, about symptoms and effects of the disease, what it is like to live with the disease?

 

Websites that have been most helpful to you?

 

 

Thanks in advance!

[wapiti]

I happen to like this one https://www.amazon.com/gp/product/0970869649/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1 Buhner, Healing Lyme

Edited May 14, 2017 by wapiti

[Spryte]

Lymenet.com. Join, and post questions in the medical questions section. They can help you find an LLMD.

 

Go to the ILADS website and poke around. Find their latest guidelines for diagnosis and treatment - I haven't done this lately, so not sure what the latest is. Used to be published under Burrascano's name, but I'm sure that has changed. My DH made a point of going to see Burrascano speak, I was too ill, but DH gained a lot, so if you can go to see an excellent LLMD give a talk - do so. Or the ILADS conference.

 

Horowitz has a great book out. I adore him, on so many levels, and he has my respect.

 

Have you watched Under Our Skin?

[rjand6more]

I've done a lot of research online.  Honestly, I've learned a lot from people I know who have it. (I live in a Lyme-endemic area.)

 

I'm holding off seeing another specialist.  The LLMD I saw was a weirdo.  I really didn't trust him. :(  I did the 4 weeks of Doxy. I still have symptoms.  I need to see another LLMD.  The last one cost $500 for the visit.:(  My insurance would not even cover the Doxy...

[Guest]

I've done a lot of research online. Honestly, I've learned a lot from people I know who have it. (I live in a Lyme-endemic area.)

 

I'm holding off seeing another specialist. The LLMD I saw was a weirdo. I really didn't trust him. :( I did the 4 weeks of Doxy. I still have symptoms. I need to see another LLMD. The last one cost $500 for the visit.:( My insurance would not even cover the Doxy...

I just hate it when that happens. I spent almost 4K with a specialist and we found nothing wrong despite all my symptoms. It's definitely ouch.

 

I hope you find someone to help you and aren't given the runaround with someone you can't trust again!

[Spryte]

I've done a lot of research online. Honestly, I've learned a lot from people I know who have it. (I live in a Lyme-endemic area.)

 

I'm holding off seeing another specialist. The LLMD I saw was a weirdo. I really didn't trust him. :( I did the 4 weeks of Doxy. I still have symptoms. I need to see another LLMD. The last one cost $500 for the visit.:( My insurance would not even cover the Doxy...

Oh goodness.

 

Honestly, no LLMD I know of would throw a patient on 4 weeks of doxy alone and call it good. You don't need to answer, but I can't help but wonder who on earth you saw.

 

Lyme is generally, by the time one gets to a LLMD, not just Lyme alone but a constellation of diseases working in sync. Treating all of them, in the right order, is key. Doxy alone won't do that, even if you took it much longer than 4 weeks. 4 weeks can be an adequate treatment for acute Lyme, if you've just contracted it. But not if you've had it long term. :( And it doesn't hit all the co-infections. Or the weird other infections one can contract from running around with a compromised immune system due to undiagnosed Lyme (hello Legionaire's Disease, I'm looking at you!).

 

My LLMD likens it to peeling layers of an onion. You uncover more issues as you go. A good LLMD will also be a talented diagnostician, and you will learn more about your body than you ever wanted to know.

 

Lyme or no, I hope you find answers.

[rjand6more]

Oh goodness.

 

Honestly, no LLMD I know of would throw a patient on 4 weeks of doxy alone and call it good. You don't need to answer, but I can't help but wonder who on earth you saw.

 

Lyme is generally, by the time one gets to a LLMD, not just Lyme alone but a constellation of diseases working in sync. Treating all of them, in the right order, is key. Doxy alone won't do that, even if you took it much longer than 4 weeks. 4 weeks can be an adequate treatment for acute Lyme, if you've just contracted it. But not if you've had it long term. :( And it doesn't hit all the co-infections. Or the weird other infections one can contract from running around with a compromised immune system due to undiagnosed Lyme (hello Legionaire's Disease, I'm looking at you!).

 

My LLMD likens it to peeling layers of an onion. You uncover more issues as you go. A good LLMD will also be a talented diagnostician, and you will learn more about your body than you ever wanted to know.

 

Lyme or no, I hope you find answers.

I wasn't clear.  The LLMD is saw was after I took the Doxy which was prescribed by the ID DR.  The LLMD prescribed other meds: Nystatin,Minocin,Metronidazole.  I did not fill those RX because I am worried about taking all those meds.  He was a flaky, crazed lunatic.  So, I walked out of that office after paying $500 for the visit.  I want to see another dr, but I just have been putting it off.

 

It's hard to find out who is good.  Most of us just want to find a dr to treat us.

 

Honestly, I have learned a great deal about Lyme by reading the threads you comment on. :)

[Spryte]

I wasn't clear. The LLMD is saw was after I took the Doxy which was prescribed by the ID DR. The LLMD prescribed other meds: Nystatin,Minocin,Metronidazole. I did not fill those RX because I am worried about taking all those meds. He was a flaky, crazed lunatic. So, I walked out of that office after paying $500 for the visit. I want to see another dr, but I just have been putting it off.

 

It's hard to find out who is good. Most of us just want to find a dr to treat us.

 

Honestly, I have learned a great deal about Lyme by reading the threads you comment on. :)

Ahh, I understand the anxiety.

 

If it makes you feel any better... there are those of us who have undergone long term Lyme treatment who could never tolerate flagyl (metronidazole), and if he started you with that - ouch. My sympathies. It's a good drug to treat it, but the herx was always more than I could handle. Herxheimer reaction - you're probably familiar with that term? AKA misery while the meds work. Many times, they will pulse it a few days on and off. I never used minocin or tetracycline. But I truly think I used every other abx at some point. Ugh. I get the anxiety about filling the meds. Anyway, your intuition re: flagyl may be on the money. [shudder] No Lyme treatment is easy, but for me - some options were harder than others. My LLMD focused on quality of life, and we went at it slowly knowing that what we didn't catch one month, we'd catch the next. (Those long life cycles are a pain, that's why it went month to month).

 

If you are on the east coast, I will be happy to privately share LLMD info. My own is awesome. She even took insurance until very recently, in order to help more people. I am only familiar with east coast docs, these days.

 

If you do want to try your meds from your current doc, I hope he told you to start one at a time. Start one, give it a few days, maybe a week, start the next. That is so you'll know if you're having an allergic reaction to one. So you'll know which one. :) Also, generally the herx will peak on day 3 and day 28 or so. It's nice to know in advance, though, ummmm, I pretty much herxed the.entire.time. And though I'm not experienced with that particular cocktail, it sounds about right. There is a tendency to go with two different classes of abx at a time, because those combos work best. The nystatin is for yeast - my doc doesn't use it so much anymore, but used to. Did he also load you up with a list of supplements? I hope?

 

Anyway, not to hijack the OP. Hopefully this is helpful, too!

Edited May 15, 2017 by Spryte

[rjand6more]

Ahh, I understand the anxiety.

 

If it makes you feel any better... there are those of us who have undergone long term Lyme treatment who could never tolerate flagyl (metronidazole), and if he started you with that - ouch. My sympathies. It's a good drug to treat it, but the herx was always more than I could handle. Herxheimer reaction - you're probably familiar with that term? AKA misery while the meds work. Many times, they will pulse it a few days on and off. I never used minocin or tetracycline. But I truly think I used every other abx at some point. Ugh. I get the anxiety about filling the meds. Anyway, your intuition re: flagyl may be on the money. [shudder] No Lyme treatment is easy, but for me - some options were harder than others. My LLMD focused on quality of life, and we went at it slowly knowing that what we didn't catch one month, we'd catch the next. (Those long life cycles are a pain, that's why it went month to month).

 

If you are on the east coast, I will be happy to privately share LLMD info. My own is awesome. She even took insurance until very recently, in order to help more people. I am only familiar with east coast docs, these days.

 

If you do want to try your meds from your current doc, I hope he told you to start one at a time. Start one, give it a few days, maybe a week, start the next. That is so you'll know if you're having an allergic reaction to one. So you'll know which one. :) Also, generally the herx will peak on day 3 and day 28 or so. It's nice to know in advance, though, ummmm, I pretty much herxed the.entire.time. And though I'm not experienced with that particular cocktail, it sounds about right. There is a tendency to go with two different classes of abx at a time, because those combos work best. The nystatin is for yeast - my doc doesn't use it so much anymore, but used to. Did he also load you up with a list of supplements? I hope?

 

Anyway, not to hijack the OP. Hopefully this is helpful, too!

 

I also hope the OP is not upset about the hijack.:)  When I was first learning, it was so helpful to just read about treatments and challenges.  At least that's what this is.:)

 

Yes, his schedule was to take the meds off and on.  He made a chart.  Also, a bunch of supplements.  He basically recommended a gluten free diet.(totally get that one after understanding inflammatory disease)  Also, standing on concrete 30 minutes a day??  It was bizarre.  I felt like I went to a voodoo dr.  A ritualistic process of figuring out the kinds and amounts of meds... I have never felt so uncomfortable in a medical office.

 

I live in the Chicagoland area. I did get the name of a dr in Chicago and I think she is my next step.

 

 

[kewb]

I second the resources spryte mentioned.  There are also a couple of lyme support groups on facebook that I have found helpful.

[Halftime Hope]

Thank you!!

 

So I talked with my son yesterday, and he was very excited to hear that it might be something treatable, rather than lupus or MS.  He was googling as we spoke, and going "Holy moly! Joint pain, joint swelling, muscle weakness, pain in the ribs, This sound just like GF!"   

 

Thank you to each of you who have chimed in. The websites and books are helpful.  Is there another way to find LLMDs, other than the ILAD website?

 

Her parents have brought her home to take the summer easy and let her R & R -- no job this summer -- so they will be able to be more proactive with her on her medical care, compared to her being away at college.  They are good people with a promising interest in healthy living, so I'm optimistic.  It just seems like none of her specialists are thinking about the possibility of lyme. 

 

I'd appreciate prayers, if anyone is so inclined.

[Spryte]

Thank you!!

 

So I talked with my son yesterday, and he was very excited to hear that it might be something treatable, rather than lupus or MS. He was googling as we spoke, and going "Holy moly! Joint pain, joint swelling, muscle weakness, pain in the ribs, This sound just like GF!"

 

Thank you to each of you who have chimed in. The websites and books are helpful. Is there another way to find LLMDs, other than the ILAD website?

 

Her parents have brought her home to take the summer easy and let her R & R -- no job this summer -- so they will be able to be more proactive with her on her medical care, compared to her being away at college. They are good people with a promising interest in healthy living, so I'm optimistic. It just seems like none of her specialists are thinking about the possibility of lyme.

 

I'd appreciate prayers, if anyone is so inclined.

Go to Lymenet.com, register, and post in Seeking A Doc (there is an entire section devoted to this). Hopefully someone will pm you a list of LLMDs in your area. Sometimes the list will include a synopsis of whether the docs accept insurance and reviews. Many LLMDs don't take ins, and there are big reasons for that. Many people drive or fly to their LLMDs. I hope you'll find someone closer.

 

FWIW, I was misdiagnosed with MS. And fibromyalgia. Among a slew of misdiagnoses. For years. I'm better now.

[SarahW]

I've done some poking around online on my own, but for those with an interest in lyme disease, please share your best resources for educating oneself about lyme, about treatments, about symptoms and effects of the disease, what it is like to live with the disease?

 

Websites that have been most helpful to you?

 

 

Thanks in advance!

 

 

I saw your first thread, and wanted to answer, but...this weekend I had bad days. Hospital, painkillers, an EKG. Lyme sucks.

 

Anyway, this is the GF you mentioned in the other thread who has to use a walker now? Yes, a sudden and inexplicable downward spiral of "weird" pain and fatigue could be a result of a Lyme infection.

 

But the whole chronic Lyme idea is controversial. I'm lucky in that there was an Indian Summer day last Fall, which caused me to throw on a pair of shorts, and my MIL happened to see the rash on the back of my leg, and that the Doctor saw the bulls-eye rash and my blood test results were positive. This weird, invisible, intermittent pain already makes me feel like I'm a crazy person complaining about "phantom" pain, at least my medical record has proof that there might be an explanation for it, kwim? If it wasn't for that, I think I would be even more miserable and hopeless right now. 

 

Which is to say, some doctors are suspicious about people wondering if they have Lyme. When I say "Yes, I had the rash and tested positive" there's a huge change in their demeanor. There's a way to test for non-immediate infections, I think. But I don't think it's commonly done.

 

So, I'm guessing the GF has been tested for the more common diseases, yes? Simple things like b12 or folate, even, those can do a number if your body suddenly decides to stop absorbing any. So you start putting checkmarks in the "no" column, and you get to diagnosis by exclusion. So then you have to start sorting through which symptoms match up, and which ones are simply coincidental (one good thing out of this mess I've been living in is that a doctor figured out I have loose joints in my fingers, and that's why doing too much cleaning work always caused me pain - I also have nerve pain in my fingers, but the temporary stiffness and swelling was its own thing). So then you can start exploring treatment for the most likely candidates, and hopefully the doctors don't mark you down as a crazy hypochondriac.

 

I'm still waiting for my appointment with a Lyme clinic, so I have nothing to say about treatment options. In the short term, while waiting for referrals and appointments, my advice to the GF is to rest as much as possible and try to manage the symptoms. So, my symptoms are mostly neurological, so I'm trying to take supplements that support my nerves and how to move with a minimum of discomfort. If she's having joint pain, she can look into some of the supplements and therapies for people with joint issues. It doesn't cure the underlying disease at all, but it may help mitigate the I-feel-hopelessly-crappy feelings while you figure out the real treatment, and hopefully it will help her return to full health faster when she does get treatment and starts to get better.

 

I'm also interested in what other people recommend as good resources.