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Could I have Lyme?
Hello,
I have a TON of symptoms of Lyme but have been tested numerous times by doctors and the blood tests come back negative, everytime. Could I still have Lyme? I have contacted a LLMD and she is going to run the specific test to see but I am just curious.
If this is Lyme it has to be advanced because I have a ton of neurological symptoms. Is there help for advanced Lyme other than antibiotics?
Thank you, I am very concerned.
Jenny
I have a TON of symptoms of Lyme but have been tested numerous times by doctors and the blood tests come back negative, everytime. Could I still have Lyme? I have contacted a LLMD and she is going to run the specific test to see but I am just curious.
If this is Lyme it has to be advanced because I have a ton of neurological symptoms. Is there help for advanced Lyme other than antibiotics?
Thank you, I am very concerned.
Jenny
The elisa test is **** and should not even be used i have done lots of research on lyme and in actually the elisa misses 70% of lyme....I was also tested by quest labs(spellin) for the western blot 2 bands postives and 2 ind but not postive by them and then got a llmd she got me tested through igenex and guess what cdc postive and a coinfection was positive also. After 3 months of antibiotics and Im 90% cured. I still have pain not as bad and mild vertigo. lymenet is a great site you can get alot of great info and support.
lymerights.org has a good site on who to call, such as senators and members of congress.
wonko, patsy10, tumbleweed23 are all on target. check out the sites they are referring you too. thanks girls, keep on educating everyone about this disease and the injustice that is tagged to it. best of health to you all.
I agree 100%! I've learned a lot there and have posted questions with good responses, but some of the content is not for me.
To each their own, and I do think it is a good place for Lyme newbies!
To each their own, and I do think it is a good place for Lyme newbies!
That website is too extreme for me too but I do refer people there because there is a lot of information there, particularly for new people who want to research lyme.
Hi gidget1967,
An LLMD is a "Lyme Literate MD." They will often treat and diagnose Lyme in people when other doctors will not. (I'm trying to stay neutral, so I'm not saying that it's good or bad that they do this!)
Do you know which test for Lyme you had?
I had two negative ELISAs and also tested negative in my CSF. I'm still waiting for my Western blot results.
If you're like me, you'll find it's difficult to find a hard bottom line in terms of getting a Lyme diagnosis. Like jenny76, I have a clinical diagnosis from an LLMD based on my history and symptoms. The blood work will either support it or go against it.
If you've seen several specialists and have made no progress on understanding your symptoms, then it may be worthwhile for you to seek an LLMD. I know Lyme is less common on the West coast, though.
Yes, I was tested and re-tested for HIV and lots of other things. I had 2 EMG studies done practically back to back by different neuros, several rounds of various blood work, several MRIs, ... ... ...
It is good to rule things out, though that was a terse response to the initial post.
Good luck, gidget. You could start a new post about your situation, you might get more replies that way then here at the bottom of an old post.
If you didn't read it above in the replies to jenn76, lymenet is a more active discussion board. Some stuff there seems too extreme for me, but there is good info and helpful people there.
An LLMD is a "Lyme Literate MD." They will often treat and diagnose Lyme in people when other doctors will not. (I'm trying to stay neutral, so I'm not saying that it's good or bad that they do this!)
Do you know which test for Lyme you had?
I had two negative ELISAs and also tested negative in my CSF. I'm still waiting for my Western blot results.
If you're like me, you'll find it's difficult to find a hard bottom line in terms of getting a Lyme diagnosis. Like jenny76, I have a clinical diagnosis from an LLMD based on my history and symptoms. The blood work will either support it or go against it.
If you've seen several specialists and have made no progress on understanding your symptoms, then it may be worthwhile for you to seek an LLMD. I know Lyme is less common on the West coast, though.
Yes, I was tested and re-tested for HIV and lots of other things. I had 2 EMG studies done practically back to back by different neuros, several rounds of various blood work, several MRIs, ... ... ...
It is good to rule things out, though that was a terse response to the initial post.
Good luck, gidget. You could start a new post about your situation, you might get more replies that way then here at the bottom of an old post.
If you didn't read it above in the replies to jenn76, lymenet is a more active discussion board. Some stuff there seems too extreme for me, but there is good info and helpful people there.
I have very similar symptoms to Jenny, and two of the doctors I saw wanted to be sure I tested for HIV. I came up negative. Of course, they tested me for many other diseases as well and haven't found anything, but HIV is another one they like to rule out.
Lyme, Fibro/CFS, Cushings or what?
Hi all, sorry for the lengthy comment/questions in advance.
What does LLMD mean? Is that a Lyme disease Doc?
I too could have written that list above and added a few more. And Thanks Margypops, I hadn't heard of Adrenal Fatigue before, but looked it up and added a symptom list (below) to which there are additional symptoms that sound like me as well. My cortisol spikes twice a day and my GP and I thouht I had Cushings...it fit. But my Endo Doc, was kind of a jerk and said no ( he said I had a fat gene and I should get botox for the sweating and diet or live w/ the weight gain- which I have never had a problem before!), so we are cheking it out along with the Lyme suspicion. I have been bitten twice, no bulls eye rash though, so duh, I feel like an idiot for not looking into it sooner.
I also had chronice endometriosis and have had a surgery nearly every three years like clock work, for the past 15, which finally resulted in a total hysterectomy 12/06. I also had ovarian cysts and three c-sections. I guess I am wondering how much of my many surgeries can be contributing to this along with several concussions. Sound like a train wreck I am sure, feel like 1/2 the time too, but just trying to get answers. They say being put under anesthesia and/or head trauma can cause auto immune disorders...
At any rate, my Lyme tests have come back negative ( I hear that at least 50% or more do) and I am saving up to see a specialist. My better half has been prodding me to do this for over a year. How many of you have had several neg. tests before it becoming positive? Did any of you end up having inflamation in your lungs or increased food allergies?
I have been diagnosed with Fibromyalgia and RT3, but so many of these autoimmune diseases seem to mimic one and other, so it's frustrating not knowing what's what. I would just like to know for sure, then I think I could deal with the pain better.
I think the worst part for me is the fatigue, joint pain and lack of energy. I used to be "super mom" and was very active to next to nil now and my whole family is suffering! So, even half my energy back and less pain would be awesome. Jenny or anyone, did they put you on antibiotics and does that help get you somewhat or mostly back to normal?
Any info will be greatly appreciated! Below is the symptom list...Thanks in advance!
Adrenal Fatigue:
*Fatigue, lethargy
*Lack of energy in the mornings, and also in the afternoon between 3 and 5 pm
*Often feel tired between 9 and 10 pm, but resist going to bed
*Lightheadedness (including dizziness and fainting) when rising from a sitting or laying-down position
*Lowered blood pressure and blood sugar
*Difficulty concentrating or remembering (brain fog)
*Consistently feeling unwell or difficulty recovering from infections
*Craving either salty or sugary foods to keep going
*Unexplained hair loss
*Nausea
*Alternating constipation and diarrhea
*Mild depression
*Decreased sex drive
*Sleep difficulties
*Unexplained pain in the upper back or neck
*Increased symptoms of PMS for women – periods are heavy and then stop (or almost stop) on the 4th day, only to start flow again on the 5th or 6th day
*Tendency to gain weight and inability to lose it – especially around the waist
*High frequency of getting the flu and other respiratory diseases – plus a tendency for them to last longer than usual
Hi all, sorry for the lengthy comment/questions in advance.
What does LLMD mean? Is that a Lyme disease Doc?
I too could have written that list above and added a few more. And Thanks Margypops, I hadn't heard of Adrenal Fatigue before, but looked it up and added a symptom list (below) to which there are additional symptoms that sound like me as well. My cortisol spikes twice a day and my GP and I thouht I had Cushings...it fit. But my Endo Doc, was kind of a jerk and said no ( he said I had a fat gene and I should get botox for the sweating and diet or live w/ the weight gain- which I have never had a problem before!), so we are cheking it out along with the Lyme suspicion. I have been bitten twice, no bulls eye rash though, so duh, I feel like an idiot for not looking into it sooner.
I also had chronice endometriosis and have had a surgery nearly every three years like clock work, for the past 15, which finally resulted in a total hysterectomy 12/06. I also had ovarian cysts and three c-sections. I guess I am wondering how much of my many surgeries can be contributing to this along with several concussions. Sound like a train wreck I am sure, feel like 1/2 the time too, but just trying to get answers. They say being put under anesthesia and/or head trauma can cause auto immune disorders...
At any rate, my Lyme tests have come back negative ( I hear that at least 50% or more do) and I am saving up to see a specialist. My better half has been prodding me to do this for over a year. How many of you have had several neg. tests before it becoming positive? Did any of you end up having inflamation in your lungs or increased food allergies?
I have been diagnosed with Fibromyalgia and RT3, but so many of these autoimmune diseases seem to mimic one and other, so it's frustrating not knowing what's what. I would just like to know for sure, then I think I could deal with the pain better.
I think the worst part for me is the fatigue, joint pain and lack of energy. I used to be "super mom" and was very active to next to nil now and my whole family is suffering! So, even half my energy back and less pain would be awesome. Jenny or anyone, did they put you on antibiotics and does that help get you somewhat or mostly back to normal?
Any info will be greatly appreciated! Below is the symptom list...Thanks in advance!
Adrenal Fatigue:
*Fatigue, lethargy
*Lack of energy in the mornings, and also in the afternoon between 3 and 5 pm
*Often feel tired between 9 and 10 pm, but resist going to bed
*Lightheadedness (including dizziness and fainting) when rising from a sitting or laying-down position
*Lowered blood pressure and blood sugar
*Difficulty concentrating or remembering (brain fog)
*Consistently feeling unwell or difficulty recovering from infections
*Craving either salty or sugary foods to keep going
*Unexplained hair loss
*Nausea
*Alternating constipation and diarrhea
*Mild depression
*Decreased sex drive
*Sleep difficulties
*Unexplained pain in the upper back or neck
*Increased symptoms of PMS for women – periods are heavy and then stop (or almost stop) on the 4th day, only to start flow again on the 5th or 6th day
*Tendency to gain weight and inability to lose it – especially around the waist
*High frequency of getting the flu and other respiratory diseases – plus a tendency for them to last longer than usual
If your lyme tests are all negative, please consider posting in the fibro / CFS board (I am one of the Community Leaders in the forum) and/or asking your physician about Chronic Fatigue Syndrome. As with lyme disease, pathogens are also creating symptoms in CFS patients... including bacterial pathogens. There are treatments available out there.
Warmest Regards,
~PlateletGal
Sounds very much like lyme to me. I have never tested positive but started having problems after a bullseye rash. I had severe neuro problems. Most of my symptoms have resolved after antibiotic treatment.
HIV? That's got to be one of the stupidest comment I've seen on this forum. You obviously know nothing about Lyme disease.
Jenny76:
You should check out the forum LymeNet (.org). Many many people with Lyme over there, people with lots of experience and clever advice to offer.
Good luck and don't lose hope!
Jenny76:
You should check out the forum LymeNet (.org). Many many people with Lyme over there, people with lots of experience and clever advice to offer.
Good luck and don't lose hope!
Yes I have been "clinically diagnosed" with Lyme disease but am awaiting my Ignex test results. My LLMD thinks that perhaps I have had it for years and b/c of my surgery for my ovarian cysts and endometriosis, it weakened my immune system and brought out my symptoms in full force. I have not started treatment yet. If you can, watch the video "Under Our Skin" it is absolutely wonderful and helps you to see why we test negative on the blood tests.
Jenny
Jenny
WOW! I just read your post and thought I wrote it. I have every symptom you have listed. I also had an ovarian cyst and IBS. I have been tested for Lyme twice. The first test came back negative, and I am still waiting on results for the second test. I have been told by two different doctors that this is all anxiety. But I keep thinking it is something else, possibly Lyme disease, although I don't live in an endemic state. Have you found anything else out?
Oops, my symptoms are:
Brain fog (really bad)
Low grade fevers for months
Nausea
Shakiness
Chills
Cold all the time
Dizziness, vertigo
Feeling of burning under my skin in face, chest, arms, shoulders
Loss of appetite
Extreme weight loss
Weakness
General feeling of being ill
Hot flashes
Heart palpitations/racing heart
Anxiety
Low blood pressure
Feeling of pressure in head and neck
Vibration feeling in head
Tightness in throat
Inability to concentrate
Nervousness
Insomnia although being extremely tired
Emotional
Keep in mind I also have Endometriosis and Ovarian cysts as well as Interstitial Cystitis and IBS.
Brain fog (really bad)
Low grade fevers for months
Nausea
Shakiness
Chills
Cold all the time
Dizziness, vertigo
Feeling of burning under my skin in face, chest, arms, shoulders
Loss of appetite
Extreme weight loss
Weakness
General feeling of being ill
Hot flashes
Heart palpitations/racing heart
Anxiety
Low blood pressure
Feeling of pressure in head and neck
Vibration feeling in head
Tightness in throat
Inability to concentrate
Nervousness
Insomnia although being extremely tired
Emotional
Keep in mind I also have Endometriosis and Ovarian cysts as well as Interstitial Cystitis and IBS.
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