Aa
Does it stay or go away?
I was bitten by a deer tick in 1998, I was very sick for months and took a ton of antibiotics. I had the classic bullseye rash and very high fever. Ever since then I am always sick, there is always something wrong with me. I am only 39 and I feel like I have arthritis in my legs. Somedays I cannot even get around. I haved asked many doctors if this stays with you or does it go away? Never got a straight answer. Does anyone know?
You need to see a doctor right away. I had similar symptoms, along with numbness in my left leg. I saw a doctor after being misdiagnosed with MS and then was rediagnosed with Lyme, and recieved treatment with antibiotics and vitamin supplements. This was 2 years ago. After my 5 month long treatment, everything went back to normal, no fatigue, no eye problems, no heart problems. So i got comfortable, ate tons of sugar, didn't watch my diet, stopped supplements. Now it's back again: fatigue, eye problems and heart issues. Go see a doctor before it gets really bad and please don't relax with your diet because you think that you're cured. Unfortunately, this is something to watch out for all your life; I learned that the hard way
God bless
God bless
Let us know how it goes with the new doc. As a group, rheumatologists are not great believers in the serious nature of Lyme ..... they sometimes talk about "post-Lyme syndrome" or start calling something fibromyalgia because they simply don't believe that Lyme isn't always cured with a couple of weeks of doxy.
Fibromyalgia is not a defined disease or illness: it is instead a collection of symptoms which have been given a made-up name (myalgia means pain, so 'pain in the muscle fibers' -- not very specific.) Even the tv commercials say that fibromyalgia "is thought to be" overactive muscles or something vague.
Are they giving you hydrocodone or hydrocortisone? Hydrocodone is a strong painkiller; hydrocortisone is an immune suppressant, which is the kind of med that Lyme specialists do not generally prescribe because the immune system needs to be up and strong when faced with a bacterial infection like Lyme.
Anyway, let us know how it goes -- sending you good thoughts!
Fibromyalgia is not a defined disease or illness: it is instead a collection of symptoms which have been given a made-up name (myalgia means pain, so 'pain in the muscle fibers' -- not very specific.) Even the tv commercials say that fibromyalgia "is thought to be" overactive muscles or something vague.
Are they giving you hydrocodone or hydrocortisone? Hydrocodone is a strong painkiller; hydrocortisone is an immune suppressant, which is the kind of med that Lyme specialists do not generally prescribe because the immune system needs to be up and strong when faced with a bacterial infection like Lyme.
Anyway, let us know how it goes -- sending you good thoughts!
Thank you so much for your advice. I will be seeing a new rheumatologist this week, hopefully have different input than last one. Just can't imagine after three years of all these meds that my liver can be in a good state. And this week I'm having the worst " fibro flair up" in 3 years. Now they got me on hydrocordone on top of all my other meds. I just want my normal or near normal life back, for my young granddaughters sakes.
and PS --
I always forget something! No doc will call him/herself an LLMD .... it's patient slang for docs who think bigger thoughts about Lyme than your current doc seems to have. An LLMD can be any specialty or none, but they are seldom found among neurologists and rheumatologists (!), because those specialists are part of the groups that first identified Lyme, and the orthodoxy runs deep. A neuro who treats Lyme like an LLMD would get run out the clubhouse pretty fast.
LLMDs are sometimes infectious disease (ID) docs, but they can also be GPs, internist, immunologists, and others. What counts is their point of view and openmindedness.
That said, there are some nutjobs out there who say they are LLMDs, but they really are too far out there for my taste. Take it one step at a time, and you'll find the right doc. And if you get the wrong one the first time (like one who wants to sell you a boatload of vitamins from his office), keep looking. Vitamins and supplements were a big part of my recovery, because of the ravages of Lyme, but I got mine at the store, not from my doc.
I always forget something! No doc will call him/herself an LLMD .... it's patient slang for docs who think bigger thoughts about Lyme than your current doc seems to have. An LLMD can be any specialty or none, but they are seldom found among neurologists and rheumatologists (!), because those specialists are part of the groups that first identified Lyme, and the orthodoxy runs deep. A neuro who treats Lyme like an LLMD would get run out the clubhouse pretty fast.
LLMDs are sometimes infectious disease (ID) docs, but they can also be GPs, internist, immunologists, and others. What counts is their point of view and openmindedness.
That said, there are some nutjobs out there who say they are LLMDs, but they really are too far out there for my taste. Take it one step at a time, and you'll find the right doc. And if you get the wrong one the first time (like one who wants to sell you a boatload of vitamins from his office), keep looking. Vitamins and supplements were a big part of my recovery, because of the ravages of Lyme, but I got mine at the store, not from my doc.
Welcome to MedHelp Lyme --
Sorry to hear about your illness -- I have one big suggestion for you: find a new doctor for a second opinion.
There is a huge split in the medical community about Lyme disease, and many MDs do not recognize Lyme as a serious or long lasting illness that requires more than a couple of weeks of antibiotics. Lyme is a complex infection that is not as simple as that, unless it is caught almost immediately after the initial bite.
The doc who believe that Lyme is hard to get and easy to cure have a very closed mind about continuing symptoms such as you have, and one of the dodges they use is 'fibromyalgia' -- which even the TV commercials for painkillers say "is thought to be caused by" a whole assortment of vague and unrelated possible causes, including "overactive nerves". In other words: the docs don't know really what causes fibro or how to treat it.
One leading possibility is that fibro is really Lyme disease, the symptoms of which line up very closely with those of fibro. The MDs who would most naturally be experts in Lyme include rheumatologists, but rheumies and infectious disease (ID) docs are among the leading deniers of Lyme as the cause of much misery. The docs who first identified 'Lyme' disease around Lyme CT a couple of decades ago did some preliminary research and decided that Lyme was hard to get and easy to cure with a couple weeks of doxycycline, and that is where their research stopped. Those docs are still highly active in the medical world, and their views are cast in concrete.
More research by others has found that Lyme has peculiar characteristics that make it difficult to cure with a couple weeks of doxy, unless the infection is discovered almost immediately, which it often is not, and that there be a tick seen and a circular red 'bullseye' rash, and that Lyme occurs only in the NE and parts of the West coast. Not true, because ... ticks can't read maps, and they hitchhike rides cross country every day on dogs and people, and the bacteria are IN docs and people everywhere as a result.
Your doc sounds openminded enough to call your ailment "fibromyalgia Lyme disease", so he's aware of Lyme as an issue related 'somehow' to the collection of symptoms called Lyme .... but it also sounds like your doc has drunk the koolaid about what the Lyme deniers call 'post Lyme syndrome' -- meaning that you HAD Lyme, were treated with a couple weeks of doxycycline, and still have symptoms, but you by definition do not have Lyme because you had 2 wks of doxy. Therefore they call your symptoms a phantom of a now-cured infection, and you're stuck with it. Hence the fancy tag of 'fibromyalgia.'
This makes no logical sense, and more progressive thinkers in Lyme diagnosis and treatment have determined that for reasons specific to Lyme and a few other diseases, two weeks of doxy doesn't do it.
Your current doc probably believes sincerely in what he is telling you, but if you were my best friend I would drag you to a Lyme specialist without delay for a second opinion. After 19 docs told me they didn't know what was wrong, or that I was just anxious, or I was at 'that stage' of life with lots of family changes going on, blah blah, the 20th doc in desperation ordered a Lyme test, which came back positive. The doc told me however (this is a direct quote), "Oh, you could not possibly have Lyme. I have patients with Lyme ... and they are all ... near death." Gee thanks, doc.
I took the test results and found a Lyme specialist, was diagnosed with Lyme and another infection often carried by the same ticks, was treated and cured. It took about a year, because Lyme has particular characteristics that make it a long treatment course, and I can bore you with those another time ... but I would most definitely find a Lyme specialist for a second opinion. Your doc means well but is following the current (mistaken) medical orthodoxy about Lyme. You don't need to tell your doc you are seeing another doc for a second opinion -- none of his business. But do this for yourself.
Lyme will not go away, so your rheumie is right that what you have is 'ever lasting.' That is, ever lasting if you don't get treated properly. I don't know that we have anyone posting here from SC, but here are two suggestions:
1 -- post a new comment here, by clicking on the brownish/orange box near the top of the page 'Post A Question' and title your inquiry something like "Need LLMD near Charleston SC" or wherever you are, or just say "Need LLMD in South Carolina area". Then in the body of your message also say how far you can travel.
We do NOT post the names of Lyme specialists (LLMDs) in the open here, because local and state medical boards often run them out of business, so any replies to you would probably come as a 'private message' on this site -- in the upper right corner of this page, you will see:
Inbox / Logout / My Shortcuts
When someone sends you a private message in response to your post, you will see a number next to Inbox, like "Inbox (1)". Click on Inbox, and you'll find the message easily.
(2) The other thing I would do at the same time is send an email to
contact [at] ILADS [dot] org
and tell them you are in Charleston SC and how far you can travel to see an LLMD. They will respond with one or more names of docs who are members of ILADS, short for International Lyme and Associated Disease Society, which is the main voluntary group for docs of all types who think broader and more progressive thoughts about Lyme.
(3) Also search online for something like
LLMD Charleston SC
and LLMD South Carolina
and LLMD Carolina
so that you are throwing a broad net. I don't know how the politics of Lyme are expressed around Charleston, but in some states, the medical boards do not allow docs to treat Lyme aggressively. Texas for example has virtually no LLMDs for that reason.
(4) Do not give up. I know I was ready to give up, but I am incredibly stubborn and knew there was something seriously wrong with me that wasn't because of hormones or family issues or any of the other garbage docs will throw at you because they are clueless.
Let us know how we can help -- we've been where you are --
Sorry to hear about your illness -- I have one big suggestion for you: find a new doctor for a second opinion.
There is a huge split in the medical community about Lyme disease, and many MDs do not recognize Lyme as a serious or long lasting illness that requires more than a couple of weeks of antibiotics. Lyme is a complex infection that is not as simple as that, unless it is caught almost immediately after the initial bite.
The doc who believe that Lyme is hard to get and easy to cure have a very closed mind about continuing symptoms such as you have, and one of the dodges they use is 'fibromyalgia' -- which even the TV commercials for painkillers say "is thought to be caused by" a whole assortment of vague and unrelated possible causes, including "overactive nerves". In other words: the docs don't know really what causes fibro or how to treat it.
One leading possibility is that fibro is really Lyme disease, the symptoms of which line up very closely with those of fibro. The MDs who would most naturally be experts in Lyme include rheumatologists, but rheumies and infectious disease (ID) docs are among the leading deniers of Lyme as the cause of much misery. The docs who first identified 'Lyme' disease around Lyme CT a couple of decades ago did some preliminary research and decided that Lyme was hard to get and easy to cure with a couple weeks of doxycycline, and that is where their research stopped. Those docs are still highly active in the medical world, and their views are cast in concrete.
More research by others has found that Lyme has peculiar characteristics that make it difficult to cure with a couple weeks of doxy, unless the infection is discovered almost immediately, which it often is not, and that there be a tick seen and a circular red 'bullseye' rash, and that Lyme occurs only in the NE and parts of the West coast. Not true, because ... ticks can't read maps, and they hitchhike rides cross country every day on dogs and people, and the bacteria are IN docs and people everywhere as a result.
Your doc sounds openminded enough to call your ailment "fibromyalgia Lyme disease", so he's aware of Lyme as an issue related 'somehow' to the collection of symptoms called Lyme .... but it also sounds like your doc has drunk the koolaid about what the Lyme deniers call 'post Lyme syndrome' -- meaning that you HAD Lyme, were treated with a couple weeks of doxycycline, and still have symptoms, but you by definition do not have Lyme because you had 2 wks of doxy. Therefore they call your symptoms a phantom of a now-cured infection, and you're stuck with it. Hence the fancy tag of 'fibromyalgia.'
This makes no logical sense, and more progressive thinkers in Lyme diagnosis and treatment have determined that for reasons specific to Lyme and a few other diseases, two weeks of doxy doesn't do it.
Your current doc probably believes sincerely in what he is telling you, but if you were my best friend I would drag you to a Lyme specialist without delay for a second opinion. After 19 docs told me they didn't know what was wrong, or that I was just anxious, or I was at 'that stage' of life with lots of family changes going on, blah blah, the 20th doc in desperation ordered a Lyme test, which came back positive. The doc told me however (this is a direct quote), "Oh, you could not possibly have Lyme. I have patients with Lyme ... and they are all ... near death." Gee thanks, doc.
I took the test results and found a Lyme specialist, was diagnosed with Lyme and another infection often carried by the same ticks, was treated and cured. It took about a year, because Lyme has particular characteristics that make it a long treatment course, and I can bore you with those another time ... but I would most definitely find a Lyme specialist for a second opinion. Your doc means well but is following the current (mistaken) medical orthodoxy about Lyme. You don't need to tell your doc you are seeing another doc for a second opinion -- none of his business. But do this for yourself.
Lyme will not go away, so your rheumie is right that what you have is 'ever lasting.' That is, ever lasting if you don't get treated properly. I don't know that we have anyone posting here from SC, but here are two suggestions:
1 -- post a new comment here, by clicking on the brownish/orange box near the top of the page 'Post A Question' and title your inquiry something like "Need LLMD near Charleston SC" or wherever you are, or just say "Need LLMD in South Carolina area". Then in the body of your message also say how far you can travel.
We do NOT post the names of Lyme specialists (LLMDs) in the open here, because local and state medical boards often run them out of business, so any replies to you would probably come as a 'private message' on this site -- in the upper right corner of this page, you will see:
Inbox / Logout / My Shortcuts
When someone sends you a private message in response to your post, you will see a number next to Inbox, like "Inbox (1)". Click on Inbox, and you'll find the message easily.
(2) The other thing I would do at the same time is send an email to
contact [at] ILADS [dot] org
and tell them you are in Charleston SC and how far you can travel to see an LLMD. They will respond with one or more names of docs who are members of ILADS, short for International Lyme and Associated Disease Society, which is the main voluntary group for docs of all types who think broader and more progressive thoughts about Lyme.
(3) Also search online for something like
LLMD Charleston SC
and LLMD South Carolina
and LLMD Carolina
so that you are throwing a broad net. I don't know how the politics of Lyme are expressed around Charleston, but in some states, the medical boards do not allow docs to treat Lyme aggressively. Texas for example has virtually no LLMDs for that reason.
(4) Do not give up. I know I was ready to give up, but I am incredibly stubborn and knew there was something seriously wrong with me that wasn't because of hormones or family issues or any of the other garbage docs will throw at you because they are clueless.
Let us know how we can help -- we've been where you are --
I was diagnosed with rocky mt spotted fever three years ag from a dear tick bite, but only after weeks of misdaignoses. I didn't show classic rash or fever just aches pains and weakness. This is said to be cause of my now fibromyalgia. I take 29 pills a day and have many flair ups. My rheumatologist says I will never be off these meds due to special circumstances, says it's call fibromylgia Lyme disease, is this true, that it is so rare and ever lasting
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
