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How do you know if you have Lyne?
Hi,
I have never posted on this forum before. I was tentatively diagnosed with MS in 2006, but then my spinal tap came back negative and two separate nuerologists have said my lesions-- 4 on brain MRI-- do not look like an MS pattern. So, I had an Igenex test done a year ago and 4 bands came back indertminate? The test itself was negative, but the 4 bands on the second page were IND. Does this mean I have Lyme? I had an appointment with a LLMD in the Bay Area who is very expensive and I did not go because to be homest I was concerned about how it was going to be diagnosed. Wouldn't the doctors inclination be to say that I have Lyme because of monetary reasons? How do they determine that you have Lyme? I am severly fatigued-- I do not go out of the house. I have a heart arrythmia that I developed, high blood pressure, hypothyroidism, pain in my back which is bad at times. stiffness in my back-- when I go to get up from a chair I am stiff and I can't straighten up-- feel like I am 90 and I just turned 47. I have stiffness in my ankles as well. I have ringing in my ears, a lot of dizziness, sometimes vertigo-- a lot of heart palpitations. I have blurry vision when I wake up in the morning, but it goes away once I am up. Basically, I am a total mess. The doctors have been going back and forth for 3 years and I am only getting worse. I was considering stem cell therapy out of the country and the doctor said if I had Lyme I would need to get that treated first. I had syrinx on an MRi of my spine as well.
Anyone with any thoughts -- I would appreciate it.
I have never posted on this forum before. I was tentatively diagnosed with MS in 2006, but then my spinal tap came back negative and two separate nuerologists have said my lesions-- 4 on brain MRI-- do not look like an MS pattern. So, I had an Igenex test done a year ago and 4 bands came back indertminate? The test itself was negative, but the 4 bands on the second page were IND. Does this mean I have Lyme? I had an appointment with a LLMD in the Bay Area who is very expensive and I did not go because to be homest I was concerned about how it was going to be diagnosed. Wouldn't the doctors inclination be to say that I have Lyme because of monetary reasons? How do they determine that you have Lyme? I am severly fatigued-- I do not go out of the house. I have a heart arrythmia that I developed, high blood pressure, hypothyroidism, pain in my back which is bad at times. stiffness in my back-- when I go to get up from a chair I am stiff and I can't straighten up-- feel like I am 90 and I just turned 47. I have stiffness in my ankles as well. I have ringing in my ears, a lot of dizziness, sometimes vertigo-- a lot of heart palpitations. I have blurry vision when I wake up in the morning, but it goes away once I am up. Basically, I am a total mess. The doctors have been going back and forth for 3 years and I am only getting worse. I was considering stem cell therapy out of the country and the doctor said if I had Lyme I would need to get that treated first. I had syrinx on an MRi of my spine as well.
Anyone with any thoughts -- I would appreciate it.
taking anti-biotics can make you feel worse - as the bugs are dieing off and so adding to your bodies 'work' to clear your system of toxins.
maybe you weren't taking a strong enough dose of Amoxicillin or you didn't take it for long enough - there are lots of 'if's and but's' with lyme - an LLMD. is definately your best course of action
Best Wishes
maybe you weren't taking a strong enough dose of Amoxicillin or you didn't take it for long enough - there are lots of 'if's and but's' with lyme - an LLMD. is definately your best course of action
Best Wishes
PS take all your relevant test results with you to the LLMD -- no matter how old the tests area. Every bit of data helps.
I'm in California too, and the rate you quote is about right -- but you can claim it with your insurance co if you have insurance (after you pay the dr).
The LLMD I see is not getting rich off charging that much, given office rent, staff, etc., and for me, only the first appointment was an hour; followups are every 3 months for half an hour after any diagnosis. (And truth be told, office visits ALL cost that much for all drs, it's just that insurance causes us to see only the insurance premium and the copay.)
Frankly, I would like to be able to see my LLMD more often when issues crop up, but it's very hard to get an appointment, so there are more takers out there than slots on the appointment schedule.
I agree entirely with Wonko's comments above -- tho I didn't go through a possible diagnosis of MS myself, so can't speak to that. However I do agree that if you're willing to go abroad for invasive medical care, I'd first spend some money here to get a Lyme assessment.
Good luck, and come back to visit whenever you like. It's a good place to vent and to get encouragement, which we all need from time to time.
The LLMD I see is not getting rich off charging that much, given office rent, staff, etc., and for me, only the first appointment was an hour; followups are every 3 months for half an hour after any diagnosis. (And truth be told, office visits ALL cost that much for all drs, it's just that insurance causes us to see only the insurance premium and the copay.)
Frankly, I would like to be able to see my LLMD more often when issues crop up, but it's very hard to get an appointment, so there are more takers out there than slots on the appointment schedule.
I agree entirely with Wonko's comments above -- tho I didn't go through a possible diagnosis of MS myself, so can't speak to that. However I do agree that if you're willing to go abroad for invasive medical care, I'd first spend some money here to get a Lyme assessment.
Good luck, and come back to visit whenever you like. It's a good place to vent and to get encouragement, which we all need from time to time.
I have never had a diagnosis I tested negative once I was bitten by a deer tick 20 years ago,I am pretty sure it goes into remission then returns, I have had all the symptoms the othere here have had, at the presant I have a lot of them , I am taking supplements to help having got nowhere with any Doctor through the years, mine came back full force after I had a physical trauma last year..I do all my own research and help myself now..
Thank you both for your replies:) I guess I will go to an LLMD. Here in the Bay Area they are $500 an hour, but it is worth a shot. I was taking Amoxicillin orally when I became ill and right after. I was taking it for an infected tooth and then when I became ill my doctor said to continue taking it. It did nothing for me obviously as I am very ill today. I dont know how this would factor into the whole Lyme diagnosis....
Welcome. I think the only way you will know is if you see a LLMD. The lyme doctor I saw said he was not sure if I had lyme or not. He said if antibiotics help then it's lyme. If they don't, then it's probably not. I felt it was worth taking the treatment. I improved greatly from treatment. I have never had a positive test but I have had the bullseye rash.
Such a seemingly basic question you pose in your topic is actually a conundrum in which many Lyme patients find themselves.
There are several factors that complicate the diagnosis of Lyme. One is that the testing is far from perfect. Secondly, physicians tend to take inflexible sides on how to interpret those imperfect test results.
Most physicians narrowly define the criteria for Lyme--One must present with an obvious case of Lyme, including the "bull's eye" rash, and/or one must have a positive screen + a certain number of positive bands on Western blot. (And of course, where you get your Western blot done and just how many and which bands show up on it may also factor into how that evidence is weighted.)
However, a second camp of doctors feels that this narrow view misses far too many patients who can greatly benefit from treatment for Lyme. They rely on clinical evidence (symptoms) and patient history and tests ruling out other conditions, and not just Lyme blood tests. They also acknowledge that ticks carry other infections (babesia and bartonella and lots more) that are not detected by Lyme tests, but cause debilitating, systemic symptoms just as Lyme does.
Additionally, there are theories that the longer you are sick and untreated, the more worn out your immune system becomes. The tests don't look directly for Lyme bacteria, but for antibodies your make to fight it. If your immune system is worn down, you may not be making sufficient antibodies to show up on the test. I don't know how valid this theory is, but I know I've encountered lots of stories of patients whose tests were mostly negative, yet they still improved a lot from antibiotic treatment.
Of course, the confusion doesn't end at diagnosis. The two camps also disagree on treatment. But I won't go into that.
That later group of doctors are a small minority, and patients refer to them as LLMD's. You seem familiar with this, and I think your concerns about seeing one are valid. However, you seem to have already exhausted the conventional routes for a diagnosis/treatment.
Your story is very relatable. I never thought I had Lyme disease because I don't recall a tick bite, never had a bull's eye rash, and started out with mostly neurological symptoms. Like you, I had lesions on my brain MRI and was told that I could have MS. But after a negative lumbar puncture, my diagnosis was put on hold. Yet I continued to become much more ill, with issues similar to ones that you list.
I too felt hesitant about going off the beaten path to an LLMD. In my case, I really didn't see much option, and I didn't feel as though I could put the matter to rest without trying.
It is a personal choice that you need to make, but if you are to the point of considering out of country stem cell treatment, than it seems appropriate to first take more steps to fully rule out (or in) Lyme disease and other tick-borne infection.
Sorry for the long response, I'm sure others will come along with more concise ideas! I think my head is still spinning from my own ordeal with this, so I tend to rant...
Take care.
There are several factors that complicate the diagnosis of Lyme. One is that the testing is far from perfect. Secondly, physicians tend to take inflexible sides on how to interpret those imperfect test results.
Most physicians narrowly define the criteria for Lyme--One must present with an obvious case of Lyme, including the "bull's eye" rash, and/or one must have a positive screen + a certain number of positive bands on Western blot. (And of course, where you get your Western blot done and just how many and which bands show up on it may also factor into how that evidence is weighted.)
However, a second camp of doctors feels that this narrow view misses far too many patients who can greatly benefit from treatment for Lyme. They rely on clinical evidence (symptoms) and patient history and tests ruling out other conditions, and not just Lyme blood tests. They also acknowledge that ticks carry other infections (babesia and bartonella and lots more) that are not detected by Lyme tests, but cause debilitating, systemic symptoms just as Lyme does.
Additionally, there are theories that the longer you are sick and untreated, the more worn out your immune system becomes. The tests don't look directly for Lyme bacteria, but for antibodies your make to fight it. If your immune system is worn down, you may not be making sufficient antibodies to show up on the test. I don't know how valid this theory is, but I know I've encountered lots of stories of patients whose tests were mostly negative, yet they still improved a lot from antibiotic treatment.
Of course, the confusion doesn't end at diagnosis. The two camps also disagree on treatment. But I won't go into that.
That later group of doctors are a small minority, and patients refer to them as LLMD's. You seem familiar with this, and I think your concerns about seeing one are valid. However, you seem to have already exhausted the conventional routes for a diagnosis/treatment.
Your story is very relatable. I never thought I had Lyme disease because I don't recall a tick bite, never had a bull's eye rash, and started out with mostly neurological symptoms. Like you, I had lesions on my brain MRI and was told that I could have MS. But after a negative lumbar puncture, my diagnosis was put on hold. Yet I continued to become much more ill, with issues similar to ones that you list.
I too felt hesitant about going off the beaten path to an LLMD. In my case, I really didn't see much option, and I didn't feel as though I could put the matter to rest without trying.
It is a personal choice that you need to make, but if you are to the point of considering out of country stem cell treatment, than it seems appropriate to first take more steps to fully rule out (or in) Lyme disease and other tick-borne infection.
Sorry for the long response, I'm sure others will come along with more concise ideas! I think my head is still spinning from my own ordeal with this, so I tend to rant...
Take care.
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