Aa
think it has to be lyme but doc says no
Ok so it started last year during my spring break. we were in the woods and like 2 days later i noticed a tick in my growing area.After that my lymph nodes on that side swelled up and got sore. I went to the doc and he gave me some antibiotics. Well about a month later it hit me i was unbelievably fatigued, muscles twitched constantly in many different places. My bowels changed, they were constantly rolling and made me have diarhea throughout the day it would hit me as soon as i woke up. When i would go for a run then stop my whole body would feel like pins and needles for a few sec then go away. So i went to the doc and had a series of test done but all came back negative including lymes. i've had 3 lymes test now and they have all been negative and its been a year. Im 20 year old male and im very active work out 3-5 days a week run 2-3 miles everyday just love the outdoors, and play sports. So i know something is wrong with my body its not normal for me to feel like this. Im still living with the muscle twitches, stomach problems are still here and i hate it i just want to be normal again. Could it still be lyme even though i took those antibiotics for a month? Should i go to a llmd bc im not getting anywhere with my doc? Is lyme disease curable? Where in chattanooga,tn could i find a llmd bc i have looked on the net and cant find any i want to get this taking care of..someone please respond and feel me in on all this please i need some help and advice thank you very much.
I'd qualify that to say that Lyme *appears* to be less common in Tennessee, but that may be because of underreporting and underdiagnosis. Ticks don't give a hang about state boundaries, and Tenn. is leafy green as I recall. Ticks would love it.
It sounds frustrating! Most of us with later stage Lyme have similar stories of going to multiple doctors. I have seen other posts from people in TN who have had trouble finding a Lyme Literate doctor. Lyme is less common in TN, but it is there. I have learned the hard way that even some great doctors may not know anything about Lyme. Ironically, the most knowledgable Lyme treaters are family physicians, not the specialists. Keep looking until you find one you're happy with and who will diagnose you properly treat you until you are well.
I think I'm going to give this guy a try. It says he's a 5 star but idk. I just know I need to do something bc my regular doc isn't doing anything he just blows it off and says Lyme isn't in this part of the area and it pisses me off bc I want to feel normal again
And still, after all is said and done, it may not be Lyme, it could be one of the coinfections that ticks carry. The vermin could be carrying one or more of them and not borrelia. These things run the gamut from malaria-like microbes to various types of nematodes and even tapeworms. You want someone who knows what to test for and how to treat it. If it was about a year ago, no matter what it is, you're in the early enough stages for it to be easily treatable, IF properly treated.
Yes, it would seem logical to go to an infectious disease (ID) doc, but unfortunately ID docs are among those who know the least about Lyme as it actually exists. The IDSA, Infectious Disease Society of America, is the main voluntary group for ID docs, and the case definition (meaning the signs, symptoms and test results) for Lyme were established by the IDSA a few decades ago. The docs who did that early work in recognizing Lyme disease appear to have made their entire careers based on their early impressions of Lyme, how long it lasts, how long to treat it, how to test for it, etc., and these same docs, who are now very senior in the IDSA, still cling to their early studies on Lyme, ignoring later research that shows Lyme is a tricky devil that often/usually isn't cured by a few weeks of antibiotics.
These guys really believe they have the whole diagnosis and treatment of Lyme down pat, and they struggle mightily against the more progressive thinkers. The other big group of docs who haven't updated their thinking as more research has been done and Lyme has spread across the continent are the neurologists, because Lyme often has neurological manifestations.
So Lyme (an infectious disease which often has neurological aspects such as brain fog) has been monopolized by ID docs and neurologists, who cling to their early studies from several decades ago and deny that anyone who is not cured by a couple weeks of antibiotics could still have Lyme. Instead, they call the continued symptoms 'post-Lyme syndrome', and say that it is the body over-reacting to bacteria that are no longer there, through an auto-immune reaction.
In comparison, the progressive thinkers about Lyme have continued to study and work on unraveling the complex bug that Lyme is, and have discovered things about Lyme that make a couple weeks of antibiotics ineffective. For example, the Lyme bacteria can conceal themselves in slimy shields in the body so the immune system cannot see the bacteria; also, the Lyme bacteria have a very slow reproductive cycle compared to most bacteria, and it is when the cell wall is disrupted in reproduction that antibiotics are most effective against the Lyme (this is why Lyme treatment, like treatment for tuberculosis [TB] and leprosy [Hansen's disease] go on for about 18 months.
For all these reasons, ID docs and neurologists are the most firm in their denial of Lyme as a special ailment that needs more than a few weeks of antibiotics. Docs in other specialties naturally look to the IDSA to set standards for diagnosis and treatment of Lyme, so the IDSA rules there too.
The IDSA has taken the position that Lyme specialists are quacks, and that makes life very difficult for us, the patients. A Lyme doc (casually called by patients 'LLMDs', short for Lyme-Literate MD) thinks bigger thoughts and treats for longer time, and also is wise to the fact that perhaps half the time, Lyme ticks also carry other diseases that need separate testing and treatment from Lyme -- these 'bonus' diseases are fearsome as well: bartonella, babesiosis [like malaria], ehrlichiosis, and a few others.
This has brought us to the point in history where the docs who SHOULD know the most about Lyme, the ID docs, actually know the least. An LLMD can be any kind of doc, and they don't call themselves LLMDs or say 'Yes, I'm an LLMD.' So it takes some scouting around to figure out which docs are LLMDs. If they are ILADS members, that's usually a good sign, but you have to keep your eyes open and learn as much as you can about Lyme, because not all LLMDs are created equal, and some do indeed have some squirrely ideas and treatment approaches [sometimes called 'protocols', meaning structured programs of meds and sometimes supplements] that can seem rather odd ... at least to me.
Skepticism and questioning and reading are necessary as a matter of self-defense when one has Lyme. So that's the long story of why seeing an ID doc may well not get you where you want to go.
These guys really believe they have the whole diagnosis and treatment of Lyme down pat, and they struggle mightily against the more progressive thinkers. The other big group of docs who haven't updated their thinking as more research has been done and Lyme has spread across the continent are the neurologists, because Lyme often has neurological manifestations.
So Lyme (an infectious disease which often has neurological aspects such as brain fog) has been monopolized by ID docs and neurologists, who cling to their early studies from several decades ago and deny that anyone who is not cured by a couple weeks of antibiotics could still have Lyme. Instead, they call the continued symptoms 'post-Lyme syndrome', and say that it is the body over-reacting to bacteria that are no longer there, through an auto-immune reaction.
In comparison, the progressive thinkers about Lyme have continued to study and work on unraveling the complex bug that Lyme is, and have discovered things about Lyme that make a couple weeks of antibiotics ineffective. For example, the Lyme bacteria can conceal themselves in slimy shields in the body so the immune system cannot see the bacteria; also, the Lyme bacteria have a very slow reproductive cycle compared to most bacteria, and it is when the cell wall is disrupted in reproduction that antibiotics are most effective against the Lyme (this is why Lyme treatment, like treatment for tuberculosis [TB] and leprosy [Hansen's disease] go on for about 18 months.
For all these reasons, ID docs and neurologists are the most firm in their denial of Lyme as a special ailment that needs more than a few weeks of antibiotics. Docs in other specialties naturally look to the IDSA to set standards for diagnosis and treatment of Lyme, so the IDSA rules there too.
The IDSA has taken the position that Lyme specialists are quacks, and that makes life very difficult for us, the patients. A Lyme doc (casually called by patients 'LLMDs', short for Lyme-Literate MD) thinks bigger thoughts and treats for longer time, and also is wise to the fact that perhaps half the time, Lyme ticks also carry other diseases that need separate testing and treatment from Lyme -- these 'bonus' diseases are fearsome as well: bartonella, babesiosis [like malaria], ehrlichiosis, and a few others.
This has brought us to the point in history where the docs who SHOULD know the most about Lyme, the ID docs, actually know the least. An LLMD can be any kind of doc, and they don't call themselves LLMDs or say 'Yes, I'm an LLMD.' So it takes some scouting around to figure out which docs are LLMDs. If they are ILADS members, that's usually a good sign, but you have to keep your eyes open and learn as much as you can about Lyme, because not all LLMDs are created equal, and some do indeed have some squirrely ideas and treatment approaches [sometimes called 'protocols', meaning structured programs of meds and sometimes supplements] that can seem rather odd ... at least to me.
Skepticism and questioning and reading are necessary as a matter of self-defense when one has Lyme. So that's the long story of why seeing an ID doc may well not get you where you want to go.
Is it a good idea to go to an infectious disease doctor? Wouldn't that be better than going to a normal doc or do they not know anything about Lyme either?
I also had antibiotics when I first got Lyme, although I had no idea what I had. I had a week of penicillin. Later, when I was getting so many mysterious symptoms, two Lyme tests came back negative (the screening test and a spinal fluid test). Then, when I got a Western Blot, it was CDC negative, but the lab said I was positive because of Borrelia specific antibodies. That lab is IGeneX, a specialty lab.
I have since learned that it is common for people who get insufficient antibiotics early in the disease to test "negative" because the early antibiotics interfered with your antibody production. Most doctors don't know this, though, making it hard to get a diagnosis sometimes. I think that only a LLMD would ever have diagnosed and treated me.
Your symptoms are similar to mine... Fatigue, headaches, tingling, twitching, and GI issues. I also have the coinfection Bartonella. Apparently, when Bartonella is present with Lyme, the neurological and GI symptoms are worse. Lots of people test negative for it even when they have it, but a good Lyme doc knows how to assess symptoms to figure it out.
You could also try a local Lyme support group to see if they have any good recommendations for you. Hang in there! You're doing the right thing in exploring it further.
I have since learned that it is common for people who get insufficient antibiotics early in the disease to test "negative" because the early antibiotics interfered with your antibody production. Most doctors don't know this, though, making it hard to get a diagnosis sometimes. I think that only a LLMD would ever have diagnosed and treated me.
Your symptoms are similar to mine... Fatigue, headaches, tingling, twitching, and GI issues. I also have the coinfection Bartonella. Apparently, when Bartonella is present with Lyme, the neurological and GI symptoms are worse. Lots of people test negative for it even when they have it, but a good Lyme doc knows how to assess symptoms to figure it out.
You could also try a local Lyme support group to see if they have any good recommendations for you. Hang in there! You're doing the right thing in exploring it further.
Jack, I would go to an LLMD and keep in mind that many tests come back as a false negative. It's a complicated and tricky illness that can be cured and it seems the faster you treat it, the faster it will go away. Trust your gut and good luck to you.
Welcome to MedHelp --
Sorry to hear about your situation, but I would do what you are doing to find a doc who can help.
To answer some of your questions:
-- "Could it still be lyme even though i took those antibiotics for a month?"
Yes, because Lyme is misunderstood by mainstream docs, who treat it like a 'normal' bacterial infection with a couple of weeks of antibiotics. Lyme has some characteristics that require longer treatment, often for months. Mainstream medicine has not yet recognized this fact for Lyme, although standard treatment for some other bacterial infections are for months, like ~18 months for tuberculosis. The reason is that Lyme and TB are caused by bacteria that have a very slow reproductive process, and it when the cell wall is disrupted during reproduction that the bacteria are most susceptible to antibiotics. Also, Lyme has tricks that allow it to hide from the body's immune system.
-- "Should i go to a llmd bc im not getting anywhere with my doc?"
I did, and I would if infected again.
-- "Is lyme disease curable?"
Yes, with appropriate treatment.
-- "Where in chattanooga,tn could i find a llmd"
You can email to: contact [at] ilads [dot] org -- that is a referral function on the International Lyme and Associated Disease Society, which is the main organization for Lyme specialists (sometimes called by patients for ease of reference LLMDs, meaning Lyme Literate MDs, meaning docs who take a progressive view of Lyme which mainstream medicine does not yet have.)
You can also do a google/online search for LLMD CHATTANOOGA and you will find many hits to other websites like this one, but with info specific to TN. Also do random searches like LYME TENNESSEE or Knoxville or wherever you can get to.
Here's a link: www [dot] tn-lyme [dot] org -- it may lead you to some referral sources.
This is all like a spy network, because mainstream medicine hasn't quite figured out what they don't know about Lyme.
LLMD btw is *patient* slang for a doc who understands Lyme and takes a progressive view of diagnosis and treatment, but the LLMDs don't call themselves by that label, and if you ask a doc if s/he is an LLMD, they will probably squirm and say no, even if they practice that way.
Let us know if we can help further, and don't give up till you get some answers that satisfy you. Best wishes --
Sorry to hear about your situation, but I would do what you are doing to find a doc who can help.
To answer some of your questions:
-- "Could it still be lyme even though i took those antibiotics for a month?"
Yes, because Lyme is misunderstood by mainstream docs, who treat it like a 'normal' bacterial infection with a couple of weeks of antibiotics. Lyme has some characteristics that require longer treatment, often for months. Mainstream medicine has not yet recognized this fact for Lyme, although standard treatment for some other bacterial infections are for months, like ~18 months for tuberculosis. The reason is that Lyme and TB are caused by bacteria that have a very slow reproductive process, and it when the cell wall is disrupted during reproduction that the bacteria are most susceptible to antibiotics. Also, Lyme has tricks that allow it to hide from the body's immune system.
-- "Should i go to a llmd bc im not getting anywhere with my doc?"
I did, and I would if infected again.
-- "Is lyme disease curable?"
Yes, with appropriate treatment.
-- "Where in chattanooga,tn could i find a llmd"
You can email to: contact [at] ilads [dot] org -- that is a referral function on the International Lyme and Associated Disease Society, which is the main organization for Lyme specialists (sometimes called by patients for ease of reference LLMDs, meaning Lyme Literate MDs, meaning docs who take a progressive view of Lyme which mainstream medicine does not yet have.)
You can also do a google/online search for LLMD CHATTANOOGA and you will find many hits to other websites like this one, but with info specific to TN. Also do random searches like LYME TENNESSEE or Knoxville or wherever you can get to.
Here's a link: www [dot] tn-lyme [dot] org -- it may lead you to some referral sources.
This is all like a spy network, because mainstream medicine hasn't quite figured out what they don't know about Lyme.
LLMD btw is *patient* slang for a doc who understands Lyme and takes a progressive view of diagnosis and treatment, but the LLMDs don't call themselves by that label, and if you ask a doc if s/he is an LLMD, they will probably squirm and say no, even if they practice that way.
Let us know if we can help further, and don't give up till you get some answers that satisfy you. Best wishes --
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