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Lymph problem update
I went in for my mammogram today. The axiallary lymph node has been prominent for nearly a year now and measures 2.5 cm. mammogram though breasts are cystic looks great, it's just the large axiallary node that is concerning. Doctor immediately asked if I had had rheumatoid testing and I said that results were low positive but consistent with my Hashimoto's diagnosis. She then asked if I had been tested for Lyme and or TB. She said that it sounds like a chronic lymphatic disease and says that the large axiallary node's texture rules out lymphoma and carcinoma in general. Yay! But she said that sarcoidosis, Lyme, tb, and other chronic lymphatic infection/disease must be further investigated. She recommended a lymphectomy to have the large axiallary node studied in depth. She was surprised that it has stayed enlarged for such a long priod of time and that it is not waxing and waning like my other nodes. Now, all I have to do is find a doctor that is willing to perform the lymphectomy. I wonder if they can test for bacterial/fungal/viral infection with a lymphectomy??? Does anyone know? Getting a step closer:). Anyone with lymph nodes that do not wax and wane or has had a lymphectomy i'd love to hear more about your personal experience!
So sorry you had to hear that from a doc! Don't accept it yet, not by any means! Lymphoma does not explain all your other symptoms, and yet Lyme and Bartonella do, including the nightmare lymph nodes. In fact, I just read something yesterday about looking for Bartonella when a Lyme patient has chronic swollen lymph nodes.
Ask the doc that is doing the lymph node removal for a PCR for Lyme (and Bartonella, if there is such a thing. You could call IGeneX and ask if they have one.). And if you're willing to pay for it, then tell him that up front. Most docs refuse to order something they don't believe is possible for good reason. They don't want to sour their relationships with insurance companies by getting tagged as someone who orders too many tests, thereby wasting their money. But if you're paying for it, then who cares? There should be no reason for a doctor to refuse. If he does, you can ask if he's afraid it might be positive! It would take a doctor highly lacking in compassion to refuse something the patient is willing to pay for.
My GP hesitated to sign my IGeneX authorization form until I told her that it was an out of network specialty lab that didn't take my insurance, and that I was paying for it directly. Then she immediately signed it, and surprised me by muttering, "Your insurance should be paying for this." I responded that I didn't care, I was desperate.
While odds are pretty good that you have Lyme, there are a couple other conditions that look very similar to multi-system, late-stage Lyme, but aren't. If you really want to cover all your bases, there are simple blood tests for both of them.
One is hemochromatosis, a genetic condition leading to excessive iron storage. A basic iron level test won't show it. You need another test that shows iron storage. Many people don't get diagnosed until middle age when they're very sick due to long term damage. You might read a little bit about it to see if it's a possibility. I read of one Lyme patient who learned she had it as a young adult when a doctor thought to test her for it before they knew she had Lyme. It turns out that she didn't have any ill effects from the excess iron yet, and by catching it early, they could prevent future damage. Of course she still ended up at an LLMD for long term Lyme treatment.
The other is Brucellosis, another tick borne disease that is rather rare and even more unknown than Lyme. It is treated by a year+ of antibiotics, so it's possible that there are some patients out there who tested negative for Lyme, ended up at an LLMD and got better with treatment not knowing they actually had Brucellosis.
I can't find anything controversial about the testing for it. I became aware of it when someone showed up on this forum who had tested negative for Lyme, but the ID doc thought to test for Brucellosis. Lo and behold, he was positive for that. I'm sure the ID doc just wrote him a one year Rx for antibiotics. Funny how they have no problem with that, but get apoplectic about doing it for Lyme.
Not to confuse things, but there have also been some articles lately about a recently discovered species of Borrelia called Borrelia Miyamotoi. Some research hospitals with high end labs have discovered some patients on the east coast who had really bad cases of it. They all tested negative for Lyme Disease (Borrelia Burgdorferi) but had the same late stage symptoms. One difference they describe is that the b.miyamotoi patients nearly all had a recurring fever. They didn't get an erythema migrans rash, either.
Of course it's foolish to assume it only occurs on the East Coast. That is just the only place they've found patients with it so far.
The article I read most recently said the CDC was working with someone (?) to try to develop a test for it, but it would take at least a year. Of course they had no information whatsoever for doctors in how to identify these patients in the meantime. Instead of telling docs to go ahead and treat patients who seem to have Lyme but test false negative, they just said nothing. I presume that the poor victims of Borrelia Miyamotoi will be left to suffer until some future time when a test is available, assuming the test is accurate, and that doctors know that it exists!
One last thought.... I think it was irresponsible of that doctor to say she thinks you have Lymphoma and to ask if you have an oncologist. That comment should come AFTER the lymph node removal and testing. She thinks all other possibilities have been eliminated, but she should also know that things are not always as they appear. Doctors usually become Lyme aware because of a specific patient, so perhaps you'll be that patient for her.
Also, don't think that your negative Bartonella tests mean you don't have it. The tests miss a whole lot of genetic variations out there that weren't on the radar when the tests were developed. I still think it's a miracle that I tested positive for the antibodies. I was negative on multiple Lyme tests (only positive was the IGeneX IgM WB) and 3 Babesia tests. I am relieved I tested positive as we probably would have missed it. My Bart symptoms could all be caused by Lyme.
The best expert there is on Bart is a veterinary professor at NC State. He is working on a culture test primarily because he knows that the antibody tests miss many cases. He has gained tremendous knowledge about Bartonella, but it hasn't percolated into the mainstream for human medicine yet. I don't even know if anyone is studying it in humans.
The IDSA guidelines for treating Lyme have a list of "not recommended" treatments for Lyme patients that includes "anti-Bartonella therapies." That's because the head of the Lyme committee has the personal opinion that even though ticks carry Bart, they don't actually transmit it to humans. He insists that Bart is the trivial cat scratch disease it was assumed to be decades ago and so it doesn't require treatment. It's disturbing given that the American Psychiatric Association has numerous things out there on the web about how Bart can cause serious neuropsychiatric symptoms. It just goes to show you that some other medical societies are not all on board with the IDSA.
Sorry if I'm all over the place on this comment and if I'm overwhelming you with info. I'm sure you feel overwhelmed at the moment with the possibilities, scary comments from doctors, and your own symptoms. Hang in there. Your ILADS doctor appointment is coming up soon! Between the lymph node testing and the ILADS doc, you'll have your answers very soon. I put VERY high odds on tick borne disease, and NOT the scary L-word. :)
Ask the doc that is doing the lymph node removal for a PCR for Lyme (and Bartonella, if there is such a thing. You could call IGeneX and ask if they have one.). And if you're willing to pay for it, then tell him that up front. Most docs refuse to order something they don't believe is possible for good reason. They don't want to sour their relationships with insurance companies by getting tagged as someone who orders too many tests, thereby wasting their money. But if you're paying for it, then who cares? There should be no reason for a doctor to refuse. If he does, you can ask if he's afraid it might be positive! It would take a doctor highly lacking in compassion to refuse something the patient is willing to pay for.
My GP hesitated to sign my IGeneX authorization form until I told her that it was an out of network specialty lab that didn't take my insurance, and that I was paying for it directly. Then she immediately signed it, and surprised me by muttering, "Your insurance should be paying for this." I responded that I didn't care, I was desperate.
While odds are pretty good that you have Lyme, there are a couple other conditions that look very similar to multi-system, late-stage Lyme, but aren't. If you really want to cover all your bases, there are simple blood tests for both of them.
One is hemochromatosis, a genetic condition leading to excessive iron storage. A basic iron level test won't show it. You need another test that shows iron storage. Many people don't get diagnosed until middle age when they're very sick due to long term damage. You might read a little bit about it to see if it's a possibility. I read of one Lyme patient who learned she had it as a young adult when a doctor thought to test her for it before they knew she had Lyme. It turns out that she didn't have any ill effects from the excess iron yet, and by catching it early, they could prevent future damage. Of course she still ended up at an LLMD for long term Lyme treatment.
The other is Brucellosis, another tick borne disease that is rather rare and even more unknown than Lyme. It is treated by a year+ of antibiotics, so it's possible that there are some patients out there who tested negative for Lyme, ended up at an LLMD and got better with treatment not knowing they actually had Brucellosis.
I can't find anything controversial about the testing for it. I became aware of it when someone showed up on this forum who had tested negative for Lyme, but the ID doc thought to test for Brucellosis. Lo and behold, he was positive for that. I'm sure the ID doc just wrote him a one year Rx for antibiotics. Funny how they have no problem with that, but get apoplectic about doing it for Lyme.
Not to confuse things, but there have also been some articles lately about a recently discovered species of Borrelia called Borrelia Miyamotoi. Some research hospitals with high end labs have discovered some patients on the east coast who had really bad cases of it. They all tested negative for Lyme Disease (Borrelia Burgdorferi) but had the same late stage symptoms. One difference they describe is that the b.miyamotoi patients nearly all had a recurring fever. They didn't get an erythema migrans rash, either.
Of course it's foolish to assume it only occurs on the East Coast. That is just the only place they've found patients with it so far.
The article I read most recently said the CDC was working with someone (?) to try to develop a test for it, but it would take at least a year. Of course they had no information whatsoever for doctors in how to identify these patients in the meantime. Instead of telling docs to go ahead and treat patients who seem to have Lyme but test false negative, they just said nothing. I presume that the poor victims of Borrelia Miyamotoi will be left to suffer until some future time when a test is available, assuming the test is accurate, and that doctors know that it exists!
One last thought.... I think it was irresponsible of that doctor to say she thinks you have Lymphoma and to ask if you have an oncologist. That comment should come AFTER the lymph node removal and testing. She thinks all other possibilities have been eliminated, but she should also know that things are not always as they appear. Doctors usually become Lyme aware because of a specific patient, so perhaps you'll be that patient for her.
Also, don't think that your negative Bartonella tests mean you don't have it. The tests miss a whole lot of genetic variations out there that weren't on the radar when the tests were developed. I still think it's a miracle that I tested positive for the antibodies. I was negative on multiple Lyme tests (only positive was the IGeneX IgM WB) and 3 Babesia tests. I am relieved I tested positive as we probably would have missed it. My Bart symptoms could all be caused by Lyme.
The best expert there is on Bart is a veterinary professor at NC State. He is working on a culture test primarily because he knows that the antibody tests miss many cases. He has gained tremendous knowledge about Bartonella, but it hasn't percolated into the mainstream for human medicine yet. I don't even know if anyone is studying it in humans.
The IDSA guidelines for treating Lyme have a list of "not recommended" treatments for Lyme patients that includes "anti-Bartonella therapies." That's because the head of the Lyme committee has the personal opinion that even though ticks carry Bart, they don't actually transmit it to humans. He insists that Bart is the trivial cat scratch disease it was assumed to be decades ago and so it doesn't require treatment. It's disturbing given that the American Psychiatric Association has numerous things out there on the web about how Bart can cause serious neuropsychiatric symptoms. It just goes to show you that some other medical societies are not all on board with the IDSA.
Sorry if I'm all over the place on this comment and if I'm overwhelming you with info. I'm sure you feel overwhelmed at the moment with the possibilities, scary comments from doctors, and your own symptoms. Hang in there. Your ILADS doctor appointment is coming up soon! Between the lymph node testing and the ILADS doc, you'll have your answers very soon. I put VERY high odds on tick borne disease, and NOT the scary L-word. :)
Here's an off-the-wall thought, based on a post in another thread here:
"Ehrlichiosis is a disease caused by Ehrlichiae bacteria. The disease is transmitted by ticks. ...
"Symptoms of ehrlichiosis are non-specific, and include flu-like symptoms, cutaneous manifestations (erythema [rash]), ***enlargement of the lymphatic nodules***, liver and spleen.
"Involvement of the gastrointestinal tract is common in the patients. Symptoms are accompanied by alteration seen in peripheral blood (leukopenia with lymphocytopenia, thrombocytopenia). Antibiotics are used in management of ehrlichiosis."
Have you been tested for Ehrlichiosis? Perhaps it is connected to your lymph nodules and swelling. Ticks can carry Ehrlichiosis, along with all the other infections that get more notice like Lyme.
Ehrlichia seems not to get much notice, because it is sometimes/often self-limiting, meaning goes away (or at least goes underground) without treatment. But when combined with other infections like Lyme that are taxing the immune system, perhaps Ehrlichia persists.
Just a thought, but it's one I would ask my doc.
"Ehrlichiosis is a disease caused by Ehrlichiae bacteria. The disease is transmitted by ticks. ...
"Symptoms of ehrlichiosis are non-specific, and include flu-like symptoms, cutaneous manifestations (erythema [rash]), ***enlargement of the lymphatic nodules***, liver and spleen.
"Involvement of the gastrointestinal tract is common in the patients. Symptoms are accompanied by alteration seen in peripheral blood (leukopenia with lymphocytopenia, thrombocytopenia). Antibiotics are used in management of ehrlichiosis."
Have you been tested for Ehrlichiosis? Perhaps it is connected to your lymph nodules and swelling. Ticks can carry Ehrlichiosis, along with all the other infections that get more notice like Lyme.
Ehrlichia seems not to get much notice, because it is sometimes/often self-limiting, meaning goes away (or at least goes underground) without treatment. But when combined with other infections like Lyme that are taxing the immune system, perhaps Ehrlichia persists.
Just a thought, but it's one I would ask my doc.
No harm in trying---- at all!
If it were me, I'd consider writing up the request (by you) and asking that it would be put in your chart records.
If you really want to push the envelope, request that the reasons for denying (if it is denied) be put in your chart also. (But that might have repercussions and I can think of reasons not to do that. But.......)
If all that is too much (and too 'dangerous') I'd ask if the paraffin-embedded tissue(s) can be requested by another doctor (your llmd, if amenable) for a look-see by HIS choice of pathologist.
I hate this stuff! In my perfect world everyone would want to explore all avenues and ideas. Sigh. Not a perfect world.
If it were me, I'd consider writing up the request (by you) and asking that it would be put in your chart records.
If you really want to push the envelope, request that the reasons for denying (if it is denied) be put in your chart also. (But that might have repercussions and I can think of reasons not to do that. But.......)
If all that is too much (and too 'dangerous') I'd ask if the paraffin-embedded tissue(s) can be requested by another doctor (your llmd, if amenable) for a look-see by HIS choice of pathologist.
I hate this stuff! In my perfect world everyone would want to explore all avenues and ideas. Sigh. Not a perfect world.
Just got a call back from the "would be" Lyme doc that wrote lab work and I kinda did my own checking off boxes on the labslip. Anyway, Here are the results:
CMV neg; bartonella IgG and IgM neg; EBV positive, but not high enough to indicate that it's active, all others (though I don't know what they actually were) were negative. She is mailing me a copy of the results and requested that I "get a full lymphectomy" of node that worries oncologist most. "I suspect you have lymphoma. I'm sorry. Do you have an oncologist or do you need a referral?" Either she forgot about my upcoming already scheduled lymphectomy or I forgot to mention it to her during our short appt.
So, you see, *sob*, I try to wrap my head around one thing only to be socked in the face with another. This is no longer taking a mental toll on me... it has become too much for words. I have quite literally had enough of the diagnosis and doctor bounce!
CMV neg; bartonella IgG and IgM neg; EBV positive, but not high enough to indicate that it's active, all others (though I don't know what they actually were) were negative. She is mailing me a copy of the results and requested that I "get a full lymphectomy" of node that worries oncologist most. "I suspect you have lymphoma. I'm sorry. Do you have an oncologist or do you need a referral?" Either she forgot about my upcoming already scheduled lymphectomy or I forgot to mention it to her during our short appt.
So, you see, *sob*, I try to wrap my head around one thing only to be socked in the face with another. This is no longer taking a mental toll on me... it has become too much for words. I have quite literally had enough of the diagnosis and doctor bounce!
Thanks for your advice and well wishes! Someone else recommended that I request a PCR test on biopsy. I don't know how open they will be in humoring my request since they don't believe that I have Lyme and will just argue that the Lyme blood test that they ran came back negative. What's the harm on trying though, right?
I'm coming to this thread a bit late I realize; I've never had swelling in any of my lymph nodes so felt I didn't have anything to say---- except "good luck" --- which I should have. My bad.
This may or may not be pertinent but your question:
" I wonder if they can test for bacterial/fungal/viral infection with a lymphectomy???"
raised a question and maybe a solution.
Whenever anyone gets an 'ectomy' or fluid removed these have to be sent to the path. lab for examination (stating the obvious here).
What if 'we' want the path. lab to looked specifically for evidence of Bb? How is that ordered?
If a LL doctor were in charge he might ask for that. When I had a spinal tap done, requested by an LLMD, Igenex did a PCR for Bb in the fluid and found it! Yay! and Bummer!
But otherwise----- I doubt if Bb is looked for. After the fact, though, I wonder if those preserved histology slides can be requested for a look-see by a laboratorian who knows what he's looking for. (Bb)
I have a friend (since deceased) who tried to donate his brain for Lyme research. We knew he had lesions in the brain almost 100% certainly from Lyme. He didn't have any success in finding a doc or lab who was interested--- too bad.
I wish you the very best of luck (and rewards for perseverance)
This may or may not be pertinent but your question:
" I wonder if they can test for bacterial/fungal/viral infection with a lymphectomy???"
raised a question and maybe a solution.
Whenever anyone gets an 'ectomy' or fluid removed these have to be sent to the path. lab for examination (stating the obvious here).
What if 'we' want the path. lab to looked specifically for evidence of Bb? How is that ordered?
If a LL doctor were in charge he might ask for that. When I had a spinal tap done, requested by an LLMD, Igenex did a PCR for Bb in the fluid and found it! Yay! and Bummer!
But otherwise----- I doubt if Bb is looked for. After the fact, though, I wonder if those preserved histology slides can be requested for a look-see by a laboratorian who knows what he's looking for. (Bb)
I have a friend (since deceased) who tried to donate his brain for Lyme research. We knew he had lesions in the brain almost 100% certainly from Lyme. He didn't have any success in finding a doc or lab who was interested--- too bad.
I wish you the very best of luck (and rewards for perseverance)
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