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First LLMD Appt!
Hi all! I had my first visit with my LLMD and he was great but I am still not sure I understand what happened? All the pre-lab work he ordered came back negative (Western Blot IGG, IGM, Thyroid, Liver, etc). He said he is not yet convinced I don't have Lyme because I was "blasted" with steroids due to a spinal cord lesion in the beginning which can cause the antibodies to "hide" from the tests. He then ordered another Western Blot through IGENEX and amox for 7 days with 3 urine samples to be tested by IGENEX. If these tests come back negative he said that he will rule out Lyme. My question is why another Western Blot if we already know it is negative and antibodies may be "hiding"? Does the fact that it is being sent to IGENEX make a difference? Just curious about his choice of testing.
Hang in there. Any antibiotic can cause upset stomach. Doxy is especially known for it. I'm allergic to amoxicillin so I'm not sure how that one feels. You could be allergic to it with the itching you mentioned above. You might want to talk to your doctor about it.
Hi Patsy. Yes all of my symptoms are below my lesion, aside from my normal facial twitches :( I think the antibiotic might be upsetting my stomach and although I have taken amoxicillin a million times in the past I think I am having some sort of reaction to it. My whole trunk area is very itchy though I don't see any rash, just a flat round red mark about the size of a dime. I think I am just having a rough day. I am sure tomorrow will be better :) If my symptoms worsen I will contact my doctor though (I guess my LLMD first). What a mess!
Are any of the symptoms on your right side above the area where the lesion is? Cervical spine lesions will cause symptoms from that level down but would not cause symptoms above that area.
I would let your doctor know if you worsen.
I would let your doctor know if you worsen.
Thanks again! I will stay away from the steroids until I go back to my LLMD in May. I just wanted to make sure that I wasn't making anything worse by taking the antibiotics. Truth be told, I am feeling pretty crappy in general today. Must just be having an off day:( Hopefully I will feel better tomorrow!!
I agree with Wonko's assessment, but then I'm not a dr either. You are asking the right question, I think.
I have not had burning sensations, so I didn't respond to the poll, but I have had twitching and aches and crackles, and they move around from place to place, seemingly at random.
I have not had burning sensations, so I didn't respond to the poll, but I have had twitching and aches and crackles, and they move around from place to place, seemingly at random.
I know we had a poll on here not too long ago, about burning sensations, and I think the result was that all who voted (admittedly only on the order of about 10 ppl) said they do experience burning. It is a broad generalization, but symptoms that are largely sensory and widespread (even if one side is dominated, but they cover a large area), seem consistent with Lyme.
You may want to ask on the MS forum, but as far as I know, taking amox. won't affect your potential MS. Also, while steroids are used to try and accelerate recovery from an exacerbation, they do not slow or reverse the damage done by MS. So not taking steroids will not worsen your degeneration if you do have MS. To my knowledge (again, take it with a grain of salt!) you would need to be on a MS DMD (disease modifying drug) in order to slow progression. But the DMD's are both expensive and with enough side effects that they are not readily Rx'ed without a concrete diagnosis. I don't know how all of the DMD's work, but I think most can be taken alongside antibiotics. (Again, perhaps a good Q for the MS forum.)
So steroids could help with your symptoms, but they could also worsen your infection (if you have one), and would not stop or prevent MS progression. Antibiotics wouldn't affect potential MS one way or the other, but would help fight an infection. DMD's can slow MS progression, and I think can be taken alongside antibiotics, but since I don't know how all of the DMD's work, that's something you'd need to look into further.
We like to think that the simplest explanation is the best. However, it is possible that you have more than one monster making you sick. I think given your situation, taking the antibiotics and avoiding the steroids (at least for now while Lyme is on the list) is a sound plan. It allows you to possibly fight what is making you sick, without given any underlying illness a boost.
You may want to ask on the MS forum, but as far as I know, taking amox. won't affect your potential MS. Also, while steroids are used to try and accelerate recovery from an exacerbation, they do not slow or reverse the damage done by MS. So not taking steroids will not worsen your degeneration if you do have MS. To my knowledge (again, take it with a grain of salt!) you would need to be on a MS DMD (disease modifying drug) in order to slow progression. But the DMD's are both expensive and with enough side effects that they are not readily Rx'ed without a concrete diagnosis. I don't know how all of the DMD's work, but I think most can be taken alongside antibiotics. (Again, perhaps a good Q for the MS forum.)
So steroids could help with your symptoms, but they could also worsen your infection (if you have one), and would not stop or prevent MS progression. Antibiotics wouldn't affect potential MS one way or the other, but would help fight an infection. DMD's can slow MS progression, and I think can be taken alongside antibiotics, but since I don't know how all of the DMD's work, that's something you'd need to look into further.
We like to think that the simplest explanation is the best. However, it is possible that you have more than one monster making you sick. I think given your situation, taking the antibiotics and avoiding the steroids (at least for now while Lyme is on the list) is a sound plan. It allows you to possibly fight what is making you sick, without given any underlying illness a boost.
Ok...one more question and then I will leave you wonderful people be for a while:) I have been told that Lyme disease is usually bilateral while most of my symptoms are on my right side (my lesion is also on the right side of my spinal cord). Over the past couple of months my right hip has been giving my some trouble. Today I woke up and my right outer thigh feels like it is on fire. I am nervous because I don't know who to call. If I call my neurologist she may want to do a round of steroids again but I really don't want to until Lyme is ruled out and my next appt with the LLMD isn't until May 5th:( The antibiotic (Amox 500mg QD) shouldn't worsen MS if that ends up being my fate right? I am sure it is just another coincidence but I just am not sure what to do. I can live with it for now but I fear it will worsen and then what?? Thank you all again for the support and understanding!!!
The ear ringing is awful. I had it for over a year continuously.
Steroids work by suppressing the immune system. So they keep the body from attacking itself in the case of autoimmune disorders. But in infectious disorders the immune suppression prevents the body from fighting the bugs. This gives the bugs freedom to multiply unchecked.
Lyme is a potentially curable illness whereas MS is not. The two diseases can be misdiagnosed for each other as the symptoms are very similar. Because of this, I think it is definitely worth investigating lyme as a possibility.
Steroids work by suppressing the immune system. So they keep the body from attacking itself in the case of autoimmune disorders. But in infectious disorders the immune suppression prevents the body from fighting the bugs. This gives the bugs freedom to multiply unchecked.
Lyme is a potentially curable illness whereas MS is not. The two diseases can be misdiagnosed for each other as the symptoms are very similar. Because of this, I think it is definitely worth investigating lyme as a possibility.
I believe I got bit in mid June and was in the emergency room in late September, so there was a three month lag, during which I was feeling lousy, but yes, it can take a while for the disease to hit big time, so your July to November time frame is not far off of mine.
Yes, the ringing in the ears. I remember it well. It's largely gone now.
Don't be afraid: once you know what's wrong, you can work to fix it or learn to live with it. It's the fear and not knowing that is the worst. Go for it.
Yes, the ringing in the ears. I remember it well. It's largely gone now.
Don't be afraid: once you know what's wrong, you can work to fix it or learn to live with it. It's the fear and not knowing that is the worst. Go for it.
The knowledge here is amazing!!! You all are wonderful:) Thank you!! I guess I was just questioning what exactly was going on. Your explainations are great. Yes, I have the spinal lesion but I have also have constant headaches, sinus issues on MRI, a cold that ruptured my eardrum (which has never happened), floaters and OMG the ringing in the ears is driving me CRAZY!!! I think my hubby is going to move into a spare bedroom so he doesn't have to sleep with all the "drown it out" noises in our bedroom!! This could all be a big coincidence (tick bite July and crazy symptoms in Novemeber) but I am interested to see what these two other tests turn up. Could the steroids supress antibody formation for a while? I ended my steroids at the end of January and got my test done middle of March. Maybe I do have the start of MS and just don't want to face it but at least I will be able to say I ruled Lyme out right???
I might not have all of the facts right, but this is my understanding:
Steroids suppress the immune system. I think I recall that you were on IVSM and a prednisone taper. That's heavy duty!
The Lyme tests don't directly detect the Lyme bacteria, they detect the antibodies that your immune system makes to fight the infection.
So, if the steroids knocked your immune system way down, then your antibody response could be very low, which could lead to a negative Western blot even if you have Lyme.
Putting you on antibiotics should help strengthen your immune system, and get it to start making antibodies again if you have Lyme. So retesting after a trial of antibiotics might show different results, since the antibiotics could help your immune system start fighting the Lyme again.
For what it is worth, lots of late-stage Lyme patients can show negative results too, and a theory is that the body just gets too sick and worn down to make antibodies anymore. Some doctors will take the approach your LLMD is taking, to re-test after some antibiotics, for this reason. So while in your case the cause is steroids, the outcome (no antibodies) is the same. Again, this is just my understanding.
My LLMD also uses Igenex, though I didn't have a urine test. I had just 2 IgG bands and 1 IgM band, so I am negative for both by CDC criteria, but IgG positive by Igenex standards. My LLMD has not discussed further testing at this time.
I was on steroids before my Lyme dx, but just prednisone, max. dose of 60 mg/day. It made me feel a lot better for a little while, I was almost symptom free for about a week AFTER I finished the course. But then everything came cascading back, and got worse. A spinal lesion sounds very scary (I have non-specific white matter lesions on my brain, but my spine was clear). But if the steroids didn't help all of your symptoms, and your symptoms can't all be explained by the spinal lesion, then pursuing Lyme seems reasonable.
A lot of LLMD's will treat based upon a clinical diagnosis (based on history and symptoms, no positive labs). So needing to take the time and $ for a 2nd test may not make sense. However, positive labs make it MUCH easier to get treatment (Rx's) through insurance. That may be part of his motivation to retest you.
Steroids suppress the immune system. I think I recall that you were on IVSM and a prednisone taper. That's heavy duty!
The Lyme tests don't directly detect the Lyme bacteria, they detect the antibodies that your immune system makes to fight the infection.
So, if the steroids knocked your immune system way down, then your antibody response could be very low, which could lead to a negative Western blot even if you have Lyme.
Putting you on antibiotics should help strengthen your immune system, and get it to start making antibodies again if you have Lyme. So retesting after a trial of antibiotics might show different results, since the antibiotics could help your immune system start fighting the Lyme again.
For what it is worth, lots of late-stage Lyme patients can show negative results too, and a theory is that the body just gets too sick and worn down to make antibodies anymore. Some doctors will take the approach your LLMD is taking, to re-test after some antibiotics, for this reason. So while in your case the cause is steroids, the outcome (no antibodies) is the same. Again, this is just my understanding.
My LLMD also uses Igenex, though I didn't have a urine test. I had just 2 IgG bands and 1 IgM band, so I am negative for both by CDC criteria, but IgG positive by Igenex standards. My LLMD has not discussed further testing at this time.
I was on steroids before my Lyme dx, but just prednisone, max. dose of 60 mg/day. It made me feel a lot better for a little while, I was almost symptom free for about a week AFTER I finished the course. But then everything came cascading back, and got worse. A spinal lesion sounds very scary (I have non-specific white matter lesions on my brain, but my spine was clear). But if the steroids didn't help all of your symptoms, and your symptoms can't all be explained by the spinal lesion, then pursuing Lyme seems reasonable.
A lot of LLMD's will treat based upon a clinical diagnosis (based on history and symptoms, no positive labs). So needing to take the time and $ for a 2nd test may not make sense. However, positive labs make it MUCH easier to get treatment (Rx's) through insurance. That may be part of his motivation to retest you.
Igenex also tests for more strains of lyme than traditional labs as far as I have read.
I had the urine test from Igenex too. Mine was negative.
I had the urine test from Igenex too. Mine was negative.
It's my understanding that Igenex testing is superior because it reports on more bands than the other labs. I'm wondering why your dr didn't just run the tests via Igenex in the first place.
My dr didn't order urine tests, I think because I did show up positive on the [Igenex] blood tests, however, from what I read about urine tests, it's another way to detect Lyme. Maybe someone else here can comment.
I have also read that treatment with steroids is bad for a person with Lyme because it suppresses your immune system, and so your body's reaction to fighting the Lyme bacteria is also suppressed (and therefore not producing any antibodies against the Lyme), so there are no antibodies showing up in the tests.
So it sounds like your dr is crosschecking the initial negative results, and with the amoxicillin trial may be trying to stimulate your immune system to produce antibodies that can be measured. (Wonko, did I get that right?)
I don't know how long it would take for your body to get over the steroids and start reacting properly against the Lyme.
All these are questions I would suggest you write down and ask your doctor when you go back. At least he didn't just pat you on the head and tell you to go away.
Hang in there!
My dr didn't order urine tests, I think because I did show up positive on the [Igenex] blood tests, however, from what I read about urine tests, it's another way to detect Lyme. Maybe someone else here can comment.
I have also read that treatment with steroids is bad for a person with Lyme because it suppresses your immune system, and so your body's reaction to fighting the Lyme bacteria is also suppressed (and therefore not producing any antibodies against the Lyme), so there are no antibodies showing up in the tests.
So it sounds like your dr is crosschecking the initial negative results, and with the amoxicillin trial may be trying to stimulate your immune system to produce antibodies that can be measured. (Wonko, did I get that right?)
I don't know how long it would take for your body to get over the steroids and start reacting properly against the Lyme.
All these are questions I would suggest you write down and ask your doctor when you go back. At least he didn't just pat you on the head and tell you to go away.
Hang in there!
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