9 ms·

Being someone who has this disease, I can say its much worse than even this article depicts. I was self-diagnosed after seeing over 10 doctors. First was told a

Being someone who has this disease, I can say its much worse than even this article depicts. I was self-diagnosed after seeing over 10 doctors. First was told ahh its Lupus! Then it was certainly some kind of STD, then Rheumatoid Arthritis, then Gout, then reactive arthritis, it wasnt until I looked at my spreadsheet I had kept to look for commonalities that I noticed every one of them said they were "75% sure it wasnt Lymes". I immediately went to anylabtestnow and had a few tests done for common forms of borellia infection and took the results to my rheumatologist. You would think thats the end of it but no, after months of antibiotics I was still not well and still couldnt walk correctly, I ended up at a naturopath in Seattle. All said and done I lost 30lbs, couldnt get out of bed, pain everywhere, symptoms of amnesia, forgetting everything, scoriosis on my eyelids, and all kinds of other really terrible side affects that I wont get into here.

lonelappde 7y ago
What did you do with/from the naturopath?
- tnorthcutt 7y ago
  https://news.ycombinator.com/item?id=20747225 https://news.ycombinator.com/item?id=20747225
- driverdan 7y ago
  Pseudoscience and placebos. The side effects of Lyme's are not well treated or understood. It's terrible for those effected. Medicine is imperfect and there are still many holes in our knowledge. That doesn't mean you should go to a quack like a naturopath.
thrav 7y ago
How are you now? My cousin has been all over the country for years working to tame hers and she’s found a combination of diet and cannabis to be extremely helpful.
- jamisteven 7y ago
  I am better now but still have some aches here and there but its nothing like what it was before, like the person above mentioned I would recommend a fast first and foremost just make sure its a controlled fast and she has a doctor monitoring her overall health while she does it, esp. if longer than 3 days. Me personally I didnt know about the fasting at the time but the doc had me on a combination of the following: 1.Cats Claw 2.Oregano Oil 3.Thorne ATP Formula 4.Corvalen D-Ribose 5.Thorne Adrenal Cortex This was in combination with a strict diet, I cant seem to remember all the details anymore but it was something along the lines of 0 sugars, 0 carbs, high fats, lots of greens, protein via white meat only. I would also take a look at Stephen Buhner's protocol, the article below is a good read as well. https://medium.com/p/6e3664fce54f/responses/show https://medium.com/p/6e3664fce54f/responses/show
  - asdf21 7y ago
    Long water fasts + cardio + antibiotics.
    - eigenloss 7y ago
      HN is really not the place to offer medical advice. Anyone reading this with a therapeutic need should see a doctor, preferably more than one.
      - GiorgioG 7y ago
        That's easy for someone who isn't grappling with this "non-existent" illness as most mainstream doctors would have you believe. I spent 3 years (and thousands of dollars) trying to find out what was wrong with me until a neurologist tested me for Rocky Mountain Spotted Fever. It came back positive, he gave me 2 rounds of doxycycline and sent me on my way. Anyone with experience with prolonged tick-borne illnesses can tell you, that's not going to fix it. I went and got an appointment with a lyme-literate doctor (there's the typical 2-3 month wait for an appointment to see any of these doctors - if you're lucky.)
e40 7y ago
Sounds terrible. I hope you are better now. I read here in a comment here about a person that went through years of antibiotics, to no avail. What finally helped? A 2 week fast. He said he found the idea on some forum and decided to give it a go, since he had nothing to lose at that point.
- jamisteven 7y ago
  Yea, knowing what I know now about fasting, that would have been the first thing I tried, not surprised at all that it worked! Glad he is better.
- simonsaidit 7y ago
  http://www.smashcompany.com/philosophy/how-i-recovered-from-lyme-disease http://www.smashcompany.com/philosophy/how-i-recovered-from-...
  - toss1 7y ago
    Very informative & helpful article for someone in my family. this tech guy really did his homework, and has some interesting and unexpected details. Thanks!
  - pagutierrezn 7y ago
    Fasting to cure the Lyme disease sounds very strange. Almost as the infamous banana diet to cure celiac disease.
- Arete314159 7y ago
  There have been some new studies that show that lingering Lyme symptoms are probably caused at least in some cases by "persister" bacteria, that go into a defensive mode during the first deluge of antibiotics and then live to re-infect you after the antibiotics are over. Similar things happen in leprosy and TB if I'm not mistaken. The latest research is about how to kill those persisters. Disulfiram, aka antabuse, is currently in clinical trials, and some doctors at specialty clinics are also using a triple antibiotic cocktail to try to achieve the same effect. I would recommend traveling to one of those clinics if you can afford it...of course they don't take insurance.
HNcantBtrustd 7y ago
I have a friend with a similar story. My wife diagnosed it over Snapchat. After that, the Physician she had been seeing agreed. (edit, Wife is a doctor of Physical Therapy) The longer I live, the less I think Physicians deserve their Monopoly.
- Beefin 7y ago
  What do you mean Physicians shouldn't deserve their monopoly? Are you suggesting crowdsourced diagnosis?
  - amelius 7y ago
    Perhaps a better approach would be "no cure, no pay". That way, physicians would have an incentive to actually cure people rather than bill them for some inconclusive diagnostic tests.
    - Akinato 7y ago
      However this would lead to over treatment, which also isn't good.
      - amelius 7y ago
        What is worse? Also, insurance companies are an opposing force here.
        sooheon 7y ago
        Heh interesting, an incentive structure that has insurance companies going to bat for the little guys for the little ones.
    - teddyuk 7y ago
      do you get a refund if you die?
      - 7y ago
Arete314159 7y ago
It's truly something I wouldn't wish on my worst enemy. The combination of severe disability -- worse than many so-called "serious" illnesses -- combined with utter indifference is crippling financially, socially, and psychologically. I was recently reading someone's post on Reddit, and they said they wished they had cancer instead, because at least with cancer, you either get better, or you die. I mean. You don't want a disease that makes you wish you had cancer.
somesortofsystm 7y ago
I have it too, and as I get older I'm really feeling it taking its toll on my body. The most annoying aspect is, I knew that you could get it from ticks all my life, but yet .. I blew it off and didn't take it seriously. One warm summer night, I laid down in the grass in a locally cool field, and enjoyed the stars. I woke up the next day with bullseyes all over me, and 4 of the terrible critters embedded in my flesh. If only I'd paid more attention, I wouldn't always be operating at 60% .. Take this one seriously folks. If you're in ticks-ville, pay attention damnit. You don't want Lyme disease.
- rubicon33 7y ago
  I've got to wonder if I have this too. For most of my life, I've felt like I'm operating at 60%. Every damn day is a constant battle with energy, and focus, and drive. I've been told its depression, anxiety, or ADHD. Prescribed medication, which I've always refused to take. As a kid we were always playing in fields. My grandparents owned property in rural CA hills where we used to run around for days unsupervised, wading through tall grass with nothing but shorts and a T-Shirt on. Did I get bit by a tick? Maybe? To my knowledge and memory, we never did find one on me... But then again, we weren't exactly checking every time we came in. I'm sure in all those years, I was bit by multiple bugs. Multiple times. Could that have injected persistent bacteria into my body that feed on my energy, and constantly drag me down? Maybe it is just depression. But that sure feels like a symptom, and not a root cause. The root cause of all this is SOMETHING, and blanket diagnoses of ADHD and depression don't satisfy my need for an actual answer. With respect to medical practitioners, I still have to say, at times it feels like we're living in the stone age of medicine.
  - somesortofsystm 7y ago
    Ever get the bullseyes? Because that is the definitive indicator of infection. Also, you've got to get multiple tests if you suspect it. One point of data does not certainty, make ..
    - rubicon33 7y ago
ambrop7 7y ago
Hope you're better. I had a similarly horrifying experience myself. More and more pain pretty much everywhere, tiredness, headaches, GERD - almost every "vague" symptom you could think of, slowly getting worse over months and years, and no answers from multiple specialists. Luckily it wasn't Lyme (which I got tested for). After getting a large panel of lab tests assembled after weeks of online research, I found high calcium levels, and with follow-up tests diagnosed myself with Primary Hyperparathyroidism (at 28 years old, which is rare). Flew to the USA a month later for surgery (the place where they do it best, the Norman Parathyroid Center, is essentially incomparable to everyone else) and now several months later I am much better.
- tapland 7y ago
  You can have hyperparathyroidism at any age. Mine was found at 15 and at 30 calcium levels haven't been high enough to justify surgery yet (but other tumors stemming from the same root cause have). How much did you pay for surgury? It sounds like going to the US and paying out of pocket would be very cost prohibitive.
  - ambrop7 7y ago
    Paid 13200 USD (they don't publish the price on their web page any more, but I suppose it didn't change much). Supposedly their price is one of the lowest (and you get the best care).
- Arete314159 7y ago
  That's amazing that you figured it out. I see a lot of stories like this lately and I wonder why patients have to become diagnosticians for themselves... As for me, thank you for your kind words. I'm still struggling, and I'm going to an out of state specialty clinic in September. Hopefully they'll do something that helps.
agumonkey 7y ago
ps: just saw your answer below https://news.ycombinator.com/item?id=20747225 https://news.ycombinator.com/item?id=20747225 And how are you doing now ? out of the war zone ?

lonelappde 7y ago

What did you do with/from the naturopath?

tnorthcutt 7y ago
https://news.ycombinator.com/item?id=20747225 https://news.ycombinator.com/item?id=20747225
driverdan 7y ago
Pseudoscience and placebos. The side effects of Lyme's are not well treated or understood. It's terrible for those effected. Medicine is imperfect and there are still many holes in our knowledge. That doesn't mean you should go to a quack like a naturopath.

thrav 7y ago

How are you now? My cousin has been all over the country for years working to tame hers and she’s found a combination of diet and cannabis to be extremely helpful.

jamisteven 7y ago
I am better now but still have some aches here and there but its nothing like what it was before, like the person above mentioned I would recommend a fast first and foremost just make sure its a controlled fast and she has a doctor monitoring her overall health while she does it, esp. if longer than 3 days. Me personally I didnt know about the fasting at the time but the doc had me on a combination of the following: 1.Cats Claw 2.Oregano Oil 3.Thorne ATP Formula 4.Corvalen D-Ribose 5.Thorne Adrenal Cortex This was in combination with a strict diet, I cant seem to remember all the details anymore but it was something along the lines of 0 sugars, 0 carbs, high fats, lots of greens, protein via white meat only. I would also take a look at Stephen Buhner's protocol, the article below is a good read as well. https://medium.com/p/6e3664fce54f/responses/show https://medium.com/p/6e3664fce54f/responses/show
- asdf21 7y ago
  Long water fasts + cardio + antibiotics.
  - eigenloss 7y ago
    HN is really not the place to offer medical advice. Anyone reading this with a therapeutic need should see a doctor, preferably more than one.
    - GiorgioG 7y ago
      That's easy for someone who isn't grappling with this "non-existent" illness as most mainstream doctors would have you believe. I spent 3 years (and thousands of dollars) trying to find out what was wrong with me until a neurologist tested me for Rocky Mountain Spotted Fever. It came back positive, he gave me 2 rounds of doxycycline and sent me on my way. Anyone with experience with prolonged tick-borne illnesses can tell you, that's not going to fix it. I went and got an appointment with a lyme-literate doctor (there's the typical 2-3 month wait for an appointment to see any of these doctors - if you're lucky.)

e40 7y ago

Sounds terrible. I hope you are better now. I read here in a comment here about a person that went through years of antibiotics, to no avail. What finally helped? A 2 week fast. He said he found the idea on some forum and decided to give it a go, since he had nothing to lose at that point.

jamisteven 7y ago
Yea, knowing what I know now about fasting, that would have been the first thing I tried, not surprised at all that it worked! Glad he is better.
simonsaidit 7y ago
http://www.smashcompany.com/philosophy/how-i-recovered-from-lyme-disease http://www.smashcompany.com/philosophy/how-i-recovered-from-...
- toss1 7y ago
  Very informative & helpful article for someone in my family. this tech guy really did his homework, and has some interesting and unexpected details. Thanks!
- pagutierrezn 7y ago
  Fasting to cure the Lyme disease sounds very strange. Almost as the infamous banana diet to cure celiac disease.
Arete314159 7y ago
There have been some new studies that show that lingering Lyme symptoms are probably caused at least in some cases by "persister" bacteria, that go into a defensive mode during the first deluge of antibiotics and then live to re-infect you after the antibiotics are over. Similar things happen in leprosy and TB if I'm not mistaken. The latest research is about how to kill those persisters. Disulfiram, aka antabuse, is currently in clinical trials, and some doctors at specialty clinics are also using a triple antibiotic cocktail to try to achieve the same effect. I would recommend traveling to one of those clinics if you can afford it...of course they don't take insurance.

HNcantBtrustd 7y ago

I have a friend with a similar story. My wife diagnosed it over Snapchat. After that, the Physician she had been seeing agreed. (edit, Wife is a doctor of Physical Therapy) The longer I live, the less I think Physicians deserve their Monopoly.

Beefin 7y ago
What do you mean Physicians shouldn't deserve their monopoly? Are you suggesting crowdsourced diagnosis?
- amelius 7y ago
  Perhaps a better approach would be "no cure, no pay". That way, physicians would have an incentive to actually cure people rather than bill them for some inconclusive diagnostic tests.
  - Akinato 7y ago
    However this would lead to over treatment, which also isn't good.
    - amelius 7y ago
      What is worse? Also, insurance companies are an opposing force here.
      - sooheon 7y ago
        Heh interesting, an incentive structure that has insurance companies going to bat for the little guys for the little ones.
  - teddyuk 7y ago
    do you get a refund if you die?
    - 7y ago

Arete314159 7y ago

It's truly something I wouldn't wish on my worst enemy. The combination of severe disability -- worse than many so-called "serious" illnesses -- combined with utter indifference is crippling financially, socially, and psychologically. I was recently reading someone's post on Reddit, and they said they wished they had cancer instead, because at least with cancer, you either get better, or you die. I mean. You don't want a disease that makes you wish you had cancer.

somesortofsystm 7y ago

I have it too, and as I get older I'm really feeling it taking its toll on my body. The most annoying aspect is, I knew that you could get it from ticks all my life, but yet .. I blew it off and didn't take it seriously. One warm summer night, I laid down in the grass in a locally cool field, and enjoyed the stars. I woke up the next day with bullseyes all over me, and 4 of the terrible critters embedded in my flesh. If only I'd paid more attention, I wouldn't always be operating at 60% .. Take this one seriously folks. If you're in ticks-ville, pay attention damnit. You don't want Lyme disease.

rubicon33 7y ago
I've got to wonder if I have this too. For most of my life, I've felt like I'm operating at 60%. Every damn day is a constant battle with energy, and focus, and drive. I've been told its depression, anxiety, or ADHD. Prescribed medication, which I've always refused to take. As a kid we were always playing in fields. My grandparents owned property in rural CA hills where we used to run around for days unsupervised, wading through tall grass with nothing but shorts and a T-Shirt on. Did I get bit by a tick? Maybe? To my knowledge and memory, we never did find one on me... But then again, we weren't exactly checking every time we came in. I'm sure in all those years, I was bit by multiple bugs. Multiple times. Could that have injected persistent bacteria into my body that feed on my energy, and constantly drag me down? Maybe it is just depression. But that sure feels like a symptom, and not a root cause. The root cause of all this is SOMETHING, and blanket diagnoses of ADHD and depression don't satisfy my need for an actual answer. With respect to medical practitioners, I still have to say, at times it feels like we're living in the stone age of medicine.
- somesortofsystm 7y ago
  Ever get the bullseyes? Because that is the definitive indicator of infection. Also, you've got to get multiple tests if you suspect it. One point of data does not certainty, make ..
  - rubicon33 7y ago

ambrop7 7y ago

Hope you're better. I had a similarly horrifying experience myself. More and more pain pretty much everywhere, tiredness, headaches, GERD - almost every "vague" symptom you could think of, slowly getting worse over months and years, and no answers from multiple specialists. Luckily it wasn't Lyme (which I got tested for). After getting a large panel of lab tests assembled after weeks of online research, I found high calcium levels, and with follow-up tests diagnosed myself with Primary Hyperparathyroidism (at 28 years old, which is rare). Flew to the USA a month later for surgery (the place where they do it best, the Norman Parathyroid Center, is essentially incomparable to everyone else) and now several months later I am much better.

tapland 7y ago
You can have hyperparathyroidism at any age. Mine was found at 15 and at 30 calcium levels haven't been high enough to justify surgery yet (but other tumors stemming from the same root cause have). How much did you pay for surgury? It sounds like going to the US and paying out of pocket would be very cost prohibitive.
- ambrop7 7y ago
  Paid 13200 USD (they don't publish the price on their web page any more, but I suppose it didn't change much). Supposedly their price is one of the lowest (and you get the best care).
Arete314159 7y ago
That's amazing that you figured it out. I see a lot of stories like this lately and I wonder why patients have to become diagnosticians for themselves... As for me, thank you for your kind words. I'm still struggling, and I'm going to an out of state specialty clinic in September. Hopefully they'll do something that helps.

agumonkey 7y ago

ps: just saw your answer below https://news.ycombinator.com/item?id=20747225 https://news.ycombinator.com/item?id=20747225 And how are you doing now ? out of the war zone ?