# Lyme Disease



## sink (May 21, 2014)

Did you get it before?
What were your symptoms?

I'm especially interested if anyone had a relapse after they were treated for it. Or if you have any good articles on it.


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## Swordsman of Mana (Jan 7, 2011)

Karin said:


> Did you get it before?
> What were your symptoms?
> I'm especially interested if anyone had a relapse after they were treated for it. Or if you have any good articles on it.


to my knowledge, Lyme's Disease is a _permanent_ disease, not one you "had before". 

you might want to ask @Animal though. she could tell you a lot more


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## Animal (May 29, 2012)

Karin said:


> Did you get it before?
> What were your symptoms?
> 
> I'm especially interested if anyone had a relapse after they were treated for it. Or if you have any good articles on it.



I've had Chronic Lyme since I was 16.

There is a lot of bullshit online and elsewhere about Lyme disease. Most doctors don't get it.







When I first got sick, this video did not exist, and I was told I was crazy etc. For a longer rant about this topic, check my recent blog:

Living with chronic illness & accompanying thoughts on how politics have affected me - Blogs - PersonalityCafe


My doctor is the top guy in the field and he is taking on this problem in a billion ways. 

This is, hands down, THE source on Lyme disease. Seriously, buy it. If you suspect Lyme in the present or the past, this can be a life savor. 

Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease: Richard Horowitz: 9781250019400: Amazon.com: Books


Also, look up Dr. Richard Horowitz . Anything HE says is true. Most of the other bullshit online is bullshit. You can also look him up on youtube.

Here's the first one that came up on my search:


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## sink (May 21, 2014)

Animal said:


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First of all, thank you for all the sources! I will definitely check out the book.

Unfortunately I don't just suspect I have it, I was diagnosed with it several months ago. Now I think I'm having a relapse, going through all the symptoms I had before I received treatment.

My main concern was that my other chronic autoimmune illness would get worse because of this. Especially if they decide to give me another course of antibiotics. So it's just kind of frustrating.


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## Animal (May 29, 2012)

Karin said:


> First of all, thank you for all the sources! I will definitely check out the book.
> 
> Unfortunately I don't just suspect I have it, I was diagnosed with it several months ago. Now I think I'm having a relapse, going through all the symptoms I had before I received treatment.
> 
> My main concern was that my other chronic autoimmune illness would get worse because of this. Especially if they decide to give me another course of antibiotics. So it's just kind of frustrating.


I don't want to pry into your medical life and I'm not a doctor, so I'm not presuming anything. But as a general statement, they have found that many "other" chronic auto-immune illnesses are actually caused by Lyme and imrpove with Lyme treatment. Including things as serious as ALS, rheumatoid arthritis, Lupus, MS, etc. I would recommend seeing a good Lyme doctor. I'm not sure if Horowitz takes new patients, and I knwo he's very busy , you know, trying to change the world so that people can get treatment worldwide  and appealing to government etc. But there are lists on websites like this: ILADS - End Lyme disease epidemic through education, awareness & physican training.

^ that is the best website source for Lyme and has been for a long time, as far as I know. If you have trouble finding a local Lyme doctor there should be sources there. If you are unable to find a Lyme doctor (specialist) ... and you want to.. this will help. If you're still unable, let me know and I'll see if I can dredge up some more sources.


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## sink (May 21, 2014)

Animal said:


> I don't want to pry into your medical life and I'm not a doctor, so I'm not presuming anything. But as a general statement, they have found that many "other" chronic auto-immune illnesses are actually caused by Lyme and imrpove with Lyme treatment. Including things as serious as ALS, rheumatoid arthritis, Lupus, MS, etc. I would recommend seeing a good Lyme doctor. I'm not sure if Horowitz takes new patients, and I knwo he's very busy , you know, trying to change the world so that people can get treatment worldwide  and appealing to government etc. But there are lists on websites like this: ILADS - End Lyme disease epidemic through education, awareness & physican training.
> 
> ^ that is the best website source for Lyme and has been for a long time, as far as I know. If you have trouble finding a local Lyme doctor there should be sources there. If you are unable to find a Lyme doctor (specialist) ... and you want to.. this will help. If you're still unable, let me know and I'll see if I can dredge up some more sources.


Oh, my other chronic illness is ulcerative colitis which I was diagnosed with over 13 years ago. So it's not correlated but I am concerned about the treatment for Lyme's making the colitis worse since I respond poorly to antibiotics.

I'm already seeing a doctor at an infections clinic where I was referred to. My main problem is my doctor informs me poorly of the things that could happen. I was basically told that a relapse is incredibly rare and that I shouldn't be concerned with it. Which is why I was surprised to now get a fever and have all the aches I experienced at the start. I'm going back for a skin re-biopsy on Monday and I guess I'll take it from there. See what my blood tests tell me and the biopsy tests.

Again I appreciate the time you put into these replies! I hope things get better for you as well.


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## Animal (May 29, 2012)

Karin said:


> Oh, my other chronic illness is ulcerative colitis which I was diagnosed with over 13 years ago. So it's not correlated but I am concerned about the treatment for Lyme's making the colitis worse since I respond poorly to antibiotics.
> 
> I'm already seeing a doctor at an infections clinic where I was referred to. My main problem is my doctor informs me poorly of the things that could happen. I was basically told that a relapse is incredibly rare and that I shouldn't be concerned with it. Which is why I was surprised to now get a fever and have all the aches I experienced at the start. I'm going back for a skin re-biopsy on Monday and I guess I'll take it from there. See what my blood tests tell me and the biopsy tests.
> 
> Again I appreciate the time you put into these replies! I hope things get better for you as well.


The documentary "under our skin" was put together because most non-lyme specialist doctors are misinformed about Lyme. Even the best doctors with the best intentions and brilliant minds, are simply misinformed because of how widespread the bullshit is. It's not necessarily their fault. But it's worth knowing that Lyme is much more complicated than meets the eye. If you have a really good doctor who cares about patients and wants to learn - you might want to recommend that book to him or her.  Just a suggestion. It might end up saving someone else's life in the future, if a patient comes in with undiagnosable problems and your doctor recognizes it. Spreading awareness can never hurt. But either way, I wish you luck with your situation too!! My situation is unlikely to get much better but I'm fighting the good fight.


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## sink (May 21, 2014)

Animal said:


> The documentary "under our skin" was put together because most non-lyme specialist doctors are misinformed about Lyme. Even the best doctors with the best intentions and brilliant minds, are simply misinformed because of how widespread the bullshit is. It's not necessarily their fault. But it's worth knowing that Lyme is much more complicated than meets the eye. If you have a really good doctor who cares about patients and wants to learn - you might want to recommend that book to him or her.  Just a suggestion. It might end up saving someone else's life in the future, if a patient comes in with undiagnosable problems and your doctor recognizes it. Spreading awareness can never hurt. But either way, I wish you luck with your situation too!! My situation is unlikely to get much better but I'm fighting the good fight.


I was fortunate enough to get a doctor that immediately recognized it as Lyme's (which I just upfront told them that I think that's what it was). She was very detail orientated to get all my symptoms straight (even measured the width of my rashes). But as you said doctors are misinformed about this disease in general though. My doctor even said it's not researched enough and they don't have enough data to go on usually.

I understand that it won't really get better (I had to deal with the same conclusion with my UC) but what can get better is how you choose to deal with it! I'm glad you're fighting back, that's all we can really do.


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## Animal (May 29, 2012)

Karin said:


> I was fortunate enough to get a doctor that immediately recognized it as Lyme's (which I just upfront told them that I think that's what it was). She was very detail orientated to get all my symptoms straight (even measured the width of my rashes). But as you said doctors are misinformed about this disease in general though. My doctor even said it's not researched enough and they don't have enough data to go on usually.
> 
> I understand that it won't really get better (I had to deal with the same conclusion with my UC) but what can get better is how you choose to deal with it! I'm glad you're fighting back, that's all we can really do.


I deal with it very well. My doctor is a top Lyme doctor and has seen some of the sickest patients in the world - and when I came in, he said, oh you'll be no problem (based on my positive attitude and demeanor and all the projects I was working on ) .. and he then took my tests & blood levels and said.. "It's a miracle you're not dead." I've been on very heavy doses of antibiotics since 1996 and I have taken every measure to get better - exercise, excellent diet, awareness of sleep schedule. I am generally acknolwedged to have very positive and sane attitude about my illness - not "positive" as in "denying the truth" but positive as in, proactive. My SX issues are problematic, but when it comes to dealing with illness, I'm good, and all my doctors thus far have been amazed at the discrepancy between my illness 'scores' and problems, vs. how healthy I seem and how spirited I am. Especially compared to other people who are technically 1/100th as sick as I am but much more miserable and less proactive. What I'm saying is .. I'm not trying to boast.. but just.. this is the way it is. I approach it as well as anyone possibly could, and I am realistic about the fact that it will probably NOT get better, and I will continue getting more and more symptoms no matter what I do. I can't really push myself any harder than I already do becuase that would count as "stressing myself out" which would make me sicker. So.. I'd confidently say I'm doing my absolute best and I have the absolute best doctor and I'm fortunate to have top care available to me. Yet I still take 50 pills a day. So.. yeah just.. realistic.   :/ haha


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## VinnieBob (Mar 24, 2014)

I am experiencing some thing similar, long story short 8 years ago in the course of 3 weeks I lost 48 lbs on account of gluten intolerance [harder to diagnose form of celiacs disease] diagnosed with IBS, casein/lactose, egg, soy intolerance's basically the only substance my body does not reject is 95% fat free hamburger and water. as a result of said problems developed liver/kidney disease, pre diabetes and chronic fatigue and now shingles plus when I was 28 I developed osteo arthritis in my shoulders which spread to every joint in my body by age 33 even though I have never broken a bone. if you saw me in person you would never guess I was on death row if you look at my pic as well which is only a month old [click on my avatar] you would not know. I still work a full time job which is extremely physical and mentally exhausting but the doctors do not see the bigger picture as to what the underlying cause is. I have been tested for lyme and like the good doctor said it is hard to diagnose

edit- there is a problem with the immune system which the MD's fail to see, even though before the shit hit the fan I only ate organic fruits and veg's , made my own sauces/soups from scratch and very rarely ate meat or packaged foods the medical field has failed all they want to do is give you a pill or a shot give you a lollipop pat you on the back and send you on the way. if they can't fix you by pill/shot/surgery then they send you to another doctor, rinse and repeat


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## Fleetfoot (May 9, 2011)

I caught it really quick. I had a tick bite that started to look like it was getting the bull's eye rash, and I immediately went to the doctor, because that's something you don't mess around with. 

The nurse practitioner I saw said "Thank goodness you came in as soon as you noticed it. You probably had an idea of how bad this can get." Of course I do, my roommate has it.


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## something987 (Jul 20, 2014)

I have Lyme and this is interesting this is posted in the "health and fitness" forum because it's caused me to gain a lot of weight that I can't lose. Even dieting hardcore. Nothing.

Does anyone have any advice? I am really depressed about this the most. I can't exercise since it makes my body more inflamed somehow, which makes it even harder.


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## Biracial (Sep 8, 2010)

Yeahright said:


> I have Lyme and this is interesting this is posted in the "health and fitness" forum because it's caused me to gain a lot of weight that I can't lose. Even dieting hardcore. Nothing.
> 
> Does anyone have any advice? I am really depressed about this the most. I can't exercise since it makes my body more inflamed somehow, which makes it even harder.


Do you have a food log of what you eat? Also, on any antidepressants?


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## Indiana Dan (Jun 11, 2013)

Yes I have it- got it a few years ago. I never went to a doctor for it.. My body healed on its own- but not before making me accept my death first. It's insane the way it makes you feel. All kinds of neurological symptoms, chills, overall body pain. Worst thing I've ever been through.


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## something987 (Jul 20, 2014)

Biracial said:


> Do you have a food log of what you eat? Also, on any antidepressants?


Yes, I keep track of everything, saw a nutritionist every week for a year and cleaned my diet as much as humanly possible. Stopped seeing her because of costs and it wasn't helping.

Not on antidepressants, just wellbutrin which is weight neutral.

My insulin is high for no apparent reason, and nothing will bring it down. The doctor told me it happens with Lyme sometimes but I don't see why diet wouldn't fix it. I eat <100g carbs a day, probably an average of about 60g.


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## dragthewaters (Feb 9, 2013)

I forgot to check for ticks after hiking on Saturday, so I'll let you know how it is if I get any symptoms.

I already have extreme fatigue sometimes depending on how messed up my hormones are, so it would be like Lyme disease squared for me.


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## ForestPaix (Aug 30, 2014)

Unfortunately an online friend of mine had it...it took him awhile to recover, although he didn't recover fully, but I think he's doing okay now, got a drawing job, so that was good.


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## Animal (May 29, 2012)

Yeahright said:


> I have Lyme and this is interesting this is posted in the "health and fitness" forum because it's caused me to gain a lot of weight that I can't lose. Even dieting hardcore. Nothing.
> 
> Does anyone have any advice? I am really depressed about this the most. I can't exercise since it makes my body more inflamed somehow, which makes it even harder.


 I have chronic Lyme (as detailed on page 1 of this thread) and I gain weight very rapidly. I also lose fairly quickly, so I have managed to maintain a fairly steady fluctuation. But there are 10 pounds that come and go every other month. It's crazy.

Taking thyroid medication helps this to continue. Without it, I just keep gaining and it's hard to stop. I'm good about exercise and diet, and I don't over-eat, but when Lyme starts messing up your body... this doesn't matter.

If I were you I'd look into having your thyroid checked. Have you done that? Lyme can throw these things out of balance, along with other hormones.


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## sink (May 21, 2014)

thismustbetheplace said:


> I forgot to check for ticks after hiking on Saturday, so I'll let you know how it is if I get any symptoms.
> 
> I already have extreme fatigue sometimes depending on how messed up my hormones are, so it would be like Lyme disease squared for me.


Definitely keep a close eye if you develop any symptoms and see a doctor immediately if you do. Especially if you live in an area with infected ticks.


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## dragthewaters (Feb 9, 2013)

Karin said:


> Definitely keep a close eye if you develop any symptoms and see a doctor immediately if you do. Especially if you live in an area with infected ticks.


Yup, nothing so far, but I know 30% of people with Lyme disease don't get the bullseye rash.


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## something987 (Jul 20, 2014)

Animal said:


> I have chronic Lyme (as detailed on page 1 of this thread) and I gain weight very rapidly. I also lose fairly quickly, so I have managed to maintain a fairly steady fluctuation. But there are 10 pounds that come and go every other month. It's crazy.
> 
> Taking thyroid medication helps this to continue. Without it, I just keep gaining and it's hard to stop. I'm good about exercise and diet, and I don't over-eat, but when Lyme starts messing up your body... this doesn't matter.
> 
> If I were you I'd look into having your thyroid checked. Have you done that? Lyme can throw these things out of balance, along with other hormones.


Yeah unfortunately my thyroid has been checked numerous times and found to be within perfect range. It would be nice to have an explanation. I am looking into metal toxicity right now. I know lack of sleep is making the problem worse immensely but nothing upon nothing is touching my insomnia.


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