Aa
Just an update: surgery, et all
Today was frustrating! My surgeon was unavailable, so I was rescheduled for Monday and had a consult with my new surgeon. His nurse took down my history and asked why i was taking doxy. I said "for suspected Lyme disease. I tested positive for a Lyme specific antibody band." She scratched out "suspected" on her notes and said "well, it's not suspected. You do have Lyme!" *record scratching sound*. I wanted so badly to say, can you insert the pic line then and give me the good stuff? Anyway he found the node easily and swayed from his instinct to just do an FNA and decided that the size did indeed call for full biopsy. It was a cluster of a mess, as usual 2 steps forward 1 step back!
Afterwards, I had a follow up GI appt. I told him about the hernia that my new PCP noticed and he felt it as well. He then referred me to a surgeon to consult with and schedule corrective surgery. Never ending! In a perfect world I could be taken care of all at once, but doctors don't work like that. I have to see 30 different doctors for 30 different things and it's not until one doctor notices something that the others fall into place and listen as well. I have seen this GI almost 10 times and complained about the tight lump that pops out of my abdomen every time. Complained of pain, nausea, vomiting, severe constipation and even pointed out the golfball sized thing near my belly button. He always blew it off, but since my PCP said hernia, suddenly he started listening! Obviously, the hernia is a separate issue from the Lyme, so I'm sorry to complain about it here, but it's just another frustrating experience that I've had to deal with in the process and need to vent.
*deep breath*
So, lymphectomy next Monday, LLMD (first appt) Wednesday, and consult for hernia surgery the following Wednesday! I'm still going to see the ID specialist at Hopkins as my PCP requested as well. I know they are notorious for blowing off Lyme, but if the nurse there believed I have Lyme then maybe I will get lucky and he will believe me too. Esp, if PCR from biopsy shows Lyme or Igenex testing by LLMD does. Either way there is a small chance of hope that I can get the ID, who accepts ins. to believe. That said, even if he did they don't believe in long term treatment do they? I don't know, but it's worth a shot.
So, I'm huddled under my heating blanket for now begging the lymph nodes to stop making my head want to pop of oft body. I cannot emphasize enough the unrelenting pain, it makes me want to throw up it is sooooo bad.
Side question: I mentioned in a previous post that the radiologist added to my report that the artery in my left axiallary is unusually enlarged. So much so that the imaging doctors couldn't discern what it was. My left coratid (neck) is visibly huge in comparison to my right as well as the vein that runs down my left forearm. Is enlarging arteries/veins a symptom of Lyme? I don't remember it being on the symptom checklist.
Afterwards, I had a follow up GI appt. I told him about the hernia that my new PCP noticed and he felt it as well. He then referred me to a surgeon to consult with and schedule corrective surgery. Never ending! In a perfect world I could be taken care of all at once, but doctors don't work like that. I have to see 30 different doctors for 30 different things and it's not until one doctor notices something that the others fall into place and listen as well. I have seen this GI almost 10 times and complained about the tight lump that pops out of my abdomen every time. Complained of pain, nausea, vomiting, severe constipation and even pointed out the golfball sized thing near my belly button. He always blew it off, but since my PCP said hernia, suddenly he started listening! Obviously, the hernia is a separate issue from the Lyme, so I'm sorry to complain about it here, but it's just another frustrating experience that I've had to deal with in the process and need to vent.
*deep breath*
So, lymphectomy next Monday, LLMD (first appt) Wednesday, and consult for hernia surgery the following Wednesday! I'm still going to see the ID specialist at Hopkins as my PCP requested as well. I know they are notorious for blowing off Lyme, but if the nurse there believed I have Lyme then maybe I will get lucky and he will believe me too. Esp, if PCR from biopsy shows Lyme or Igenex testing by LLMD does. Either way there is a small chance of hope that I can get the ID, who accepts ins. to believe. That said, even if he did they don't believe in long term treatment do they? I don't know, but it's worth a shot.
So, I'm huddled under my heating blanket for now begging the lymph nodes to stop making my head want to pop of oft body. I cannot emphasize enough the unrelenting pain, it makes me want to throw up it is sooooo bad.
Side question: I mentioned in a previous post that the radiologist added to my report that the artery in my left axiallary is unusually enlarged. So much so that the imaging doctors couldn't discern what it was. My left coratid (neck) is visibly huge in comparison to my right as well as the vein that runs down my left forearm. Is enlarging arteries/veins a symptom of Lyme? I don't remember it being on the symptom checklist.
You're very sturdy -- I think you're handling all of this exceptionally well. We're all thinking of you! Keep us posted, okay?
Thanks to all for the info!
Surgery went well. It was funny bc they kept trying to give me more and more pain meds to make me comfortable before I left. I kept telling them that the area of incision was fine it was the pain that I walked in with that wouldn't go away no matter how much pain medication they gave me. I could tell they all pitied me. The biopsy results will take up to a week bc they don't really know what they are looking for. I gave my intern Dr. D's (ID doc at Hopkins for Lyme) info and he promised to consult with him on pathology.
LLMD appt today went wonderfully! She is keeping me on doxy for a little longer and has added plaquenil (sp?) and then burbur for detox. Also, transfer factor multi-immune supplements and medcaps T3 to lower thyroid antibodies. She said that she will put me on IV abx if neuro symptoms worsen (although, I find it hard to imagine that they can worsen). She believes I have Lyme, babesia, and Bart. Lyme and babesia was sent to Igenex and Bart was sent to fly labs (?). So, all in all I should have some answers in a week or two.
I also was given a referral to a cardiologist regarding my enlarged arteries. The carotid is visibly enlarged and LLMD had no explanation.
Surgery went well. It was funny bc they kept trying to give me more and more pain meds to make me comfortable before I left. I kept telling them that the area of incision was fine it was the pain that I walked in with that wouldn't go away no matter how much pain medication they gave me. I could tell they all pitied me. The biopsy results will take up to a week bc they don't really know what they are looking for. I gave my intern Dr. D's (ID doc at Hopkins for Lyme) info and he promised to consult with him on pathology.
LLMD appt today went wonderfully! She is keeping me on doxy for a little longer and has added plaquenil (sp?) and then burbur for detox. Also, transfer factor multi-immune supplements and medcaps T3 to lower thyroid antibodies. She said that she will put me on IV abx if neuro symptoms worsen (although, I find it hard to imagine that they can worsen). She believes I have Lyme, babesia, and Bart. Lyme and babesia was sent to Igenex and Bart was sent to fly labs (?). So, all in all I should have some answers in a week or two.
I also was given a referral to a cardiologist regarding my enlarged arteries. The carotid is visibly enlarged and LLMD had no explanation.
Many Lyme patients get well without IV meds, but there is a subset with entrenched neuro symptoms who just can't get well without them. With my MS-like symptoms I'm confident I was in that category. I never had Rocephin, though. I did Bicillin LA intramuscular shots, which is really a parenteral drug, not an intravenous drug.
Some doctors will not treat with IV meds because it draws more scrutiny than orals. Also, some insurance companies won't pay for extended IV meds but they will pay for extended orals (solely about cost, I'm sure).
For some patients, cost is a driving issue, and while orals might take longer, they're more manageable financially and less risky than having a port or PICC line. I wanted IV meds as I believed I'd recover faster with them. I was happy to do the shots and avoid the PICC line. It's definitely a decision to be worked out between each patient and their Lyme treating physician.
Some doctors will not treat with IV meds because it draws more scrutiny than orals. Also, some insurance companies won't pay for extended IV meds but they will pay for extended orals (solely about cost, I'm sure).
For some patients, cost is a driving issue, and while orals might take longer, they're more manageable financially and less risky than having a port or PICC line. I wanted IV meds as I believed I'd recover faster with them. I was happy to do the shots and avoid the PICC line. It's definitely a decision to be worked out between each patient and their Lyme treating physician.
About oral meds vs IV:
I never had IV, so I know it's not required to have an IV to get well. There are various reasons different docs approach things in different ways, and do ask your doc why oral meds vs IV and the reasons the doc is selecting one over the other.
There is no one standard approach for Lyme treatment, and it all depends on your infection(s) and your health otherwise and what your doc's view is. Lyme is still in that vague of figuring things out, so don't be surprised there are differences in treatments and methods..
I never had IV, so I know it's not required to have an IV to get well. There are various reasons different docs approach things in different ways, and do ask your doc why oral meds vs IV and the reasons the doc is selecting one over the other.
There is no one standard approach for Lyme treatment, and it all depends on your infection(s) and your health otherwise and what your doc's view is. Lyme is still in that vague of figuring things out, so don't be surprised there are differences in treatments and methods..
Just to clarify my typo... I meant that my doc usually gives "3 months OF orals" before going to IV or IM meds.
Yeah, Bart tests are frequently false negative. Most doctors know so little about it, that they won't take it seriously without a positive. Even then, they're under the impression that it doesn't need treatment. It has only hit the radar (of doctors who are actually paying attention to it) in the last 10-20 years.
Chronic infections are known to clog up blood vessels, reducing circulation and leading to things like heart disease. (This is documented in the article I recently posted about biofilms, which can get established in blood vessel walls.)
I read about a doctor who found that many of his MS patients had significant narrowing of the carotid artery and did an experimental procedure to basically clean out the blood vessel to restore full circulation. They experienced dramatic improvement in fatigue and other symptoms, but eventually, the gains were lost. This is consistent with a chronic infection that is reducing flow to the brain, but since no one can prove that MS stems from a chronic infection, the procedure was considered a failure. I don't know if anyone is trying to figure out what was causing the buildup in the artery in the first place. (I'll bet it was, wait for it.... chronic INFECTION!)
I was pleasantly surprised to read the quote Jackie posted from the JH Lyme doc. That is a very different approach than the dismissive statements I've read from Paul Auwerter, the head of ID there. I do hope they diagnose you and give you the good stuff.
But be warned. If you go straight to IV Rocephin when you already have an overloaded lymph system, you are at risk of awful herxing from a big die off. My doc doesn't go straight to IV on really sick patients for that reason. He gives up to 3 months or orals first in order to ease in to it. They might treat you for a month or two, which will be a big financial help if your insurance won't cover anything from an LLMD.
Just know that they will not give you the long term treatment you most likely need. They'll stop the treatment and tell you that symptoms will fade over a year or so. A year later, if you're still miserable or even worse, they'll tell you that you must have something else. You could easily need a year of treatment given how you've described your symptoms.
Only a good LLMD will treat you until you're well. Only a good LLMD will make a clinical diagnosis for a coinfection. Many coinfections test false negative, and yet Lyme treatment won't work with untreated coinfections. ID docs don't really appreciate this issue of the messy circumstances of multiple infections. They are still enslaved to test results and cookbook treatments. I would encourage you to get what you can from them, but keep the LLMD appointment.
(Note: I have yet to hear of a publicly funded study in the U.S. looking at multiple tick borne coinfections and how they might look different than each would individually.)
That is bizarre that a GI doc ignored all your signs of a hernia until the GP said "hernia." I wonder if the GI doc thought you were just a hypochondriac, but finally paid attention when another doctor noticed something. Very unimpressive.
Sorry to hear you need hernia surgery. Surgery can be very hard on a body, and many Lyme patients reported feeling a lot worse afterwards. If it isn't an emergency, you might want to put it off for a little while to let Lyme treatment knock the infection back a bit first. I am not a doctor, though, so I encourage you to ask the LLMDs opinion on that.
Sounds like you're moving in the right direction!!
Chronic infections are known to clog up blood vessels, reducing circulation and leading to things like heart disease. (This is documented in the article I recently posted about biofilms, which can get established in blood vessel walls.)
I read about a doctor who found that many of his MS patients had significant narrowing of the carotid artery and did an experimental procedure to basically clean out the blood vessel to restore full circulation. They experienced dramatic improvement in fatigue and other symptoms, but eventually, the gains were lost. This is consistent with a chronic infection that is reducing flow to the brain, but since no one can prove that MS stems from a chronic infection, the procedure was considered a failure. I don't know if anyone is trying to figure out what was causing the buildup in the artery in the first place. (I'll bet it was, wait for it.... chronic INFECTION!)
I was pleasantly surprised to read the quote Jackie posted from the JH Lyme doc. That is a very different approach than the dismissive statements I've read from Paul Auwerter, the head of ID there. I do hope they diagnose you and give you the good stuff.
But be warned. If you go straight to IV Rocephin when you already have an overloaded lymph system, you are at risk of awful herxing from a big die off. My doc doesn't go straight to IV on really sick patients for that reason. He gives up to 3 months or orals first in order to ease in to it. They might treat you for a month or two, which will be a big financial help if your insurance won't cover anything from an LLMD.
Just know that they will not give you the long term treatment you most likely need. They'll stop the treatment and tell you that symptoms will fade over a year or so. A year later, if you're still miserable or even worse, they'll tell you that you must have something else. You could easily need a year of treatment given how you've described your symptoms.
Only a good LLMD will treat you until you're well. Only a good LLMD will make a clinical diagnosis for a coinfection. Many coinfections test false negative, and yet Lyme treatment won't work with untreated coinfections. ID docs don't really appreciate this issue of the messy circumstances of multiple infections. They are still enslaved to test results and cookbook treatments. I would encourage you to get what you can from them, but keep the LLMD appointment.
(Note: I have yet to hear of a publicly funded study in the U.S. looking at multiple tick borne coinfections and how they might look different than each would individually.)
That is bizarre that a GI doc ignored all your signs of a hernia until the GP said "hernia." I wonder if the GI doc thought you were just a hypochondriac, but finally paid attention when another doctor noticed something. Very unimpressive.
Sorry to hear you need hernia surgery. Surgery can be very hard on a body, and many Lyme patients reported feeling a lot worse afterwards. If it isn't an emergency, you might want to put it off for a little while to let Lyme treatment knock the infection back a bit first. I am not a doctor, though, so I encourage you to ask the LLMDs opinion on that.
Sounds like you're moving in the right direction!!
Just re-read a post you made and you got a neg. for Bart. on a test.
Now I happen to know, personally, that tests for Bart can bounce all over the place. Mine did, many times---- even from Igenex. Sigh.
Now I happen to know, personally, that tests for Bart can bounce all over the place. Mine did, many times---- even from Igenex. Sigh.
http://www.rightdiagnosis.com/sym/axillary_swelling.htm
A long list of reasons for axillary artery swelling. Lyme isn't mentioned (of course) but other diseases are plentiful, plus Cat Scratch Disease (Bart.)
Can you convince the doc to have the path. guy look for 'cat scratch disease'. They might acknowledge that name but Bartonella henselae is the one we know.
Wiki says:
"Cat scratch disease (CSD), also known as cat scratch fever,[1] Teeny's Disease,[1] inoculation lymphoreticulosis,[1] and subacute regional lymphadenitis,[1] is a usually benign infectious disease caused by the intracellular bacterium Bartonella henselae. It is most commonly found in children following a scratch or bite from a cat within about one to two weeks. It was first discovered in 1889 by Henri Parinaud.[2]"
So, if they found CSD and you might have the Bartonella dx handed to you on a plate. Not that you'd want Bart. but at least confirmation is good by an irrefutable resource. (I don't know, have you been dx'd with Bart?)
Some synonyms for CSD since they may avoid the mention of B. henselae.
Synonyms
Cat-Scratch-Oculoglandular Syndrome
Parinaud's Syndrome
Cat-Scratch Adenitis
Cat-Scratch Fever
Debre's Syndrome
Foshay-Mollaret Cat-Scratch Fever
Lymphadenitis, Regional Nonbacterial
Lymphoreticulosis, Benign Inoculation
Petzetakis' Syndrome
http://www.webmd.com/a-to-z-guides/cat-scratch-disease
I have to respond to the 'benign' part of what Wiki said!!!!!! Wiki is not my preferred source---- but useful as a jumping off point. I'll may read the 'history' of the input on Wiki about 'benign'. Sometimes there's a heated 'argument' going on in the background.
So enough about Bart and CSD.
A long list of reasons for axillary artery swelling. Lyme isn't mentioned (of course) but other diseases are plentiful, plus Cat Scratch Disease (Bart.)
Can you convince the doc to have the path. guy look for 'cat scratch disease'. They might acknowledge that name but Bartonella henselae is the one we know.
Wiki says:
"Cat scratch disease (CSD), also known as cat scratch fever,[1] Teeny's Disease,[1] inoculation lymphoreticulosis,[1] and subacute regional lymphadenitis,[1] is a usually benign infectious disease caused by the intracellular bacterium Bartonella henselae. It is most commonly found in children following a scratch or bite from a cat within about one to two weeks. It was first discovered in 1889 by Henri Parinaud.[2]"
So, if they found CSD and you might have the Bartonella dx handed to you on a plate. Not that you'd want Bart. but at least confirmation is good by an irrefutable resource. (I don't know, have you been dx'd with Bart?)
Some synonyms for CSD since they may avoid the mention of B. henselae.
Synonyms
Cat-Scratch-Oculoglandular Syndrome
Parinaud's Syndrome
Cat-Scratch Adenitis
Cat-Scratch Fever
Debre's Syndrome
Foshay-Mollaret Cat-Scratch Fever
Lymphadenitis, Regional Nonbacterial
Lymphoreticulosis, Benign Inoculation
Petzetakis' Syndrome
http://www.webmd.com/a-to-z-guides/cat-scratch-disease
I have to respond to the 'benign' part of what Wiki said!!!!!! Wiki is not my preferred source---- but useful as a jumping off point. I'll may read the 'history' of the input on Wiki about 'benign'. Sometimes there's a heated 'argument' going on in the background.
So enough about Bart and CSD.
The time and energy you have spent researching for me is invaluable! I cannot express in words what this means to me. It like trying to explain to your child how much you live them... words just don't do it justice. I have 4 children ages 12, 8, 4, and 1 who I when I'm not in bed I devote all my strength in convincing that mommy is ok through a false visage. In order to do this, I push through everyday and though they see mommy's red face from wiped tears I hope that my fake smiles are able to fool them enough. That being said I don't have the time nor mental strength to do my own research. This is why med help has become my second home. Through forums and the kindness of you, my now extended family, I can get information where all of the "scary" stuff has been filtered out and what remains is knowledge and hope. Again, you are invaluable and I hope to not only return the favor but pay it forward when I break through to the other side.
Maybe, just maybe my bad luck streak will end and I will be able to get in with an understanding ID doc at Hopkins. As you pointed out, there is hope and I will rest on that until my appt. I will find the docs names and discern which one should be able to help me best and relay it to my PCP for referral.
I pushed myself and went to my kids' soccer games today. Unfortunately, I forgot about the warning to stay out of the sun while on abx. Though not sunburned, I have weird stinging sensations on my hands and face. I wonder how long that will last?
As far as the vascular issue goes, I will type more tomorrow. I suddenly feel sleepy, but thanks so much for the offer to help!
Maybe, just maybe my bad luck streak will end and I will be able to get in with an understanding ID doc at Hopkins. As you pointed out, there is hope and I will rest on that until my appt. I will find the docs names and discern which one should be able to help me best and relay it to my PCP for referral.
I pushed myself and went to my kids' soccer games today. Unfortunately, I forgot about the warning to stay out of the sun while on abx. Though not sunburned, I have weird stinging sensations on my hands and face. I wonder how long that will last?
As far as the vascular issue goes, I will type more tomorrow. I suddenly feel sleepy, but thanks so much for the offer to help!
@leila------- don'tcha just hate when you're all pumped up ready to do something ------ then..........?
But, on the 'bright side'----- I've always felt that any surgery is best done at the beginning of the week rather than on a Fri. ----barring emergency of course.
Doctor's seem to disappear on the week-ends. There will be other docs available of course, but it would be nice to the 'real' doc around. Just my feelings.
I commend you for holding up under this onslaught of problems! 'venting' "Talk therapy" IS a valuable way of releasing pent-up fears and worries.
"We" work cheap! So use us.
About the lymph issues and the person that Jackie referenced--- I ask her if she were seeing an immunologist. Haven't received an answer yet.
I hope you get through this week-end quickly and with a minimum of pain. I haven't started looking for reasons for a large carotid artery. Any other details that might help?
But, on the 'bright side'----- I've always felt that any surgery is best done at the beginning of the week rather than on a Fri. ----barring emergency of course.
Doctor's seem to disappear on the week-ends. There will be other docs available of course, but it would be nice to the 'real' doc around. Just my feelings.
I commend you for holding up under this onslaught of problems! 'venting' "Talk therapy" IS a valuable way of releasing pent-up fears and worries.
"We" work cheap! So use us.
About the lymph issues and the person that Jackie referenced--- I ask her if she were seeing an immunologist. Haven't received an answer yet.
I hope you get through this week-end quickly and with a minimum of pain. I haven't started looking for reasons for a large carotid artery. Any other details that might help?
In another post just made today, NutrinutBob made the following comment in passing:
"One of the most significant things that I have gone through, thanks to herbals, is a massive die off that filled the lymphatic system of my legs."
I am not fully familiar with his treatment approach, but I think it's a particular combination he (and his docs?) have devised for his particular situation. So I mention this only to note that others with Lyme have had lymph issues from Lyme die-off, which may be of comfort to you.
>Hug! and all good thoughts to you.<
"One of the most significant things that I have gone through, thanks to herbals, is a massive die off that filled the lymphatic system of my legs."
I am not fully familiar with his treatment approach, but I think it's a particular combination he (and his docs?) have devised for his particular situation. So I mention this only to note that others with Lyme have had lymph issues from Lyme die-off, which may be of comfort to you.
>Hug! and all good thoughts to you.<
I wish I had useful information for you ... all I can say though is to hang on. I think you are doing an amazing job keeping it together.
The docs at Johns Hopkins are first rate, and I just did a search online for -- johns hopkins hospital lyme disease -- and found a number of references, some for patients, and some more technically oriented. Here is one in a patient-oriented newsletter:
--------begin article-------------------------------------------------------------------------
There are the things that most people know about Lyme disease—that it’s carried by ticks, that it can start with flulike symptoms, and that people who spend a lot of time outdoors are more at risk. But it’s the things you
may not know that can mean a lifetime spent battling Lyme.
One of the most common assumptions is that deer are the primary culprits in carrying the bacteria, Borrelia burgdorferi, that causes Lyme disease, says Lyme disease specialist John Aucott, a Johns Hopkins School of Medicine instructor. But in reality, he continues, one of the
most common carriers of Lyme disease are mice — particularly those that live in close proximity to residents of mid-Atlantic and northeastern
cities. Which brings up another common misconception about Lyme: that it’s most common to hikers or pet owners. “You don’t have to go hiking to get Lyme disease,” Aucott says. “The majority of people we see are those
who are clearing brush around their house. Your risk drops dramatically when you step back on to your well-groomed lawn.”
Then there’s the tell-tale bull’s eye rash, which most people assume automatically comes with Lyme. But, says Aucott, “most people don’t get that target-shaped rash, and if they don’t, they often don’t think about Lyme and then miss the opportunity for an early diagnosis.”
Despite its status as the foremost infectious disease in the United States, Lyme disease is also fairly preventable. And, because spring and early summer mark peak times for the spread, now is a prime time for its prevention. Eliminating the habitat for mice surrounding your home, such as wood and brush piles, can help prevent disease transmissions. Maintaining a neat lawn can also help. Aucott recommends creating a wood chip-border between the lawn and any surrounding woods. Hikers
should stay on well-groomed paths and check themselves for ticks—particularly in hidden places like the groin and underarms—after any outdoor excursion that may have left them exposed.
---------------------------end article--------------------------------------
And here is the bio of one of their docs:
--------------------------begin bio--------------------------------
[name omitted here]
Education and Training:
B.S., Medical Technology, University of Maryland at Baltimore School of Medicine
M.D., University of Maryland at Baltimore School of Medicine
Residencies:
Anatomic Pathology: Johns Hopkins University School of Medicine
Laboratory Medicine: Johns Hopkins University School of Medicine
Pathology: University of Texas Medical Branch, Galveston
Postdoctoral Fellowship, Infectious Diseases: University of Texas Medical Branch, Galveston
Professional Interests:
Vector-borne pathogens and tick-borne bacterial diseases
Anaplasma (human granulocytic anaplasmosis)
Borrelia (Lyme disease and relapsing fever)
Ehrlichia (human monocytic ehrlichiosis and ewingii ehrlichiosis)
Rickettsia (Rocky Mountain spotted fever, typhus)
Medical parasitology, especially hemoparasites
Plasmodium species (malaria)
Babesia species (babesiosis)
Trypanosoma brucei gambiense and rhodesiense (African sleeping sickness)
Medical entomology (ticks, lice, fleas, mites)
Molecular diagnostics of non-viral infectious diseases
Research:
Current research focuses upon the host-pathogen interactions of obligate intracellular tick-borne rickettsial bacteria of the genus Ehrlichia and Anaplasma, and interactions with the spirochete Borrelia burgdorferi that causes Lyme disease. Most work focuses on Anaplasma phagocytophilum that causes human granulocytic anaplasmosis (HGA). The bacterium that causes this increasingly recognized disease has successfully adapted to an endosomal compartment of neutrophils. The bacterial cellular and molecular mechanisms of adherence and entry, and the mechanisms by which the bacteria manipulate the host cell are major areas of study.
One significant focus is on AnkA, a protein injected into host cells that is transported to the neutrophil nucleus where is binds to DNA and proteins and may directly influence eukaryotic gene transcription. AnkA appears to act predominantly as a matrix attachment region binding protein and may be an important epigenetic factor in altering the host neutrophil’s transcriptional program conditioning the cell as a more hospitable environment for the intracellular infection.
In addition, we have developed a murine [mouse] model of granulocytic anaplasmosis that has allowed us to show that most histopathologic changes characteristic of human and mammalian disease caused by this bacterium are mediated by host inflammatory and immune responses rather than by direct pathogen effects, for which the underlying mechanisms of tissue injury are major areas of interest.
The laboratory uses a multidisciplinary approach to investigation, melding new molecular and cellular biology tools with standard microbiologic, histopathologic, and immunologic studies to discern mechanisms of disease by these unique bacterial pathogens.
Recent Publications [just scan this list .. it's pretty dry]:
Scorpio DG, von Loewenich FD, Göbel H, Bogdan C, Dumler JS. Innate immune response to Anaplasma phagocytophilum contributes to hepatic injury. Clin Vaccine Immunol. 2006; 13:806-809.
Dierberg KL, Dumler JS. Lymph node hemophagocytosis in rickettsial diseases: a pathogenetic role for CD8 T lymphocytes in human monocytic ehrlichiosis (HME)? BMC Infect Dis. 2006 21; 6:121
***Wormser GP, Dattwyler RJ***, Shapiro ED, Halperin JJ, Steere AC, Klempner MS, Krause PJ, Bakken JS, Strle F, Stanek G, Bockenstedt L, Fish D, Dumler JS, Nadelman RB. Infectious Diseases Society of America Practice Guidelines for Clinical Assessment, Treatment and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis. Clin Infect Dis 2006; 43:1089-1134.
Choi KS, Scorpio DG, Barat NC, Dumler JS. Msp2 variation in Anaplasma phagocytophilum in vivo does not stimulate T cell immune responses or interferon-gamma production. FEMS Immunol Microbiol 2007; 49:374-386.
Choi KS, Webb T, Oelke M, Scorpio DG, Dumler JS. Differential innate immune cell activation and proinflammatory response in A. phagocytophilum infection. Infect Immun 2007; 75:3124-30.
Dumler JS, Barat NC, Barat CE, Bakken JS. Human granulocytic anaplasmosis and macrophage activation. Clin Infect Dis 2007; 45: 199-204.
Choi K-S, Dumler JS. A mitogenic component in polar lipid-enriched A. phagocytophilum membranes. Clin Vaccine Immunol [in press].
--------------------------end bio-------------------------------------
Sounds like he's a serious guy. He seems to have collaborated on an article with Wormser and Dattwyler (see above) who are notorious Lyme-deniers, but that doesn't mean the doc himself is stupid.
I'd give it a try! See what happens and then chart your next steps from there.
If nothing else, they will rule out everything you *don't* have, and if they do not come up with a positive diagnosis of Lyme or something else, at least your list of things to consider is a good bit shorter.
Hang on, keep us posted -- we're rooting for you. J.
The docs at Johns Hopkins are first rate, and I just did a search online for -- johns hopkins hospital lyme disease -- and found a number of references, some for patients, and some more technically oriented. Here is one in a patient-oriented newsletter:
--------begin article-------------------------------------------------------------------------
There are the things that most people know about Lyme disease—that it’s carried by ticks, that it can start with flulike symptoms, and that people who spend a lot of time outdoors are more at risk. But it’s the things you
may not know that can mean a lifetime spent battling Lyme.
One of the most common assumptions is that deer are the primary culprits in carrying the bacteria, Borrelia burgdorferi, that causes Lyme disease, says Lyme disease specialist John Aucott, a Johns Hopkins School of Medicine instructor. But in reality, he continues, one of the
most common carriers of Lyme disease are mice — particularly those that live in close proximity to residents of mid-Atlantic and northeastern
cities. Which brings up another common misconception about Lyme: that it’s most common to hikers or pet owners. “You don’t have to go hiking to get Lyme disease,” Aucott says. “The majority of people we see are those
who are clearing brush around their house. Your risk drops dramatically when you step back on to your well-groomed lawn.”
Then there’s the tell-tale bull’s eye rash, which most people assume automatically comes with Lyme. But, says Aucott, “most people don’t get that target-shaped rash, and if they don’t, they often don’t think about Lyme and then miss the opportunity for an early diagnosis.”
Despite its status as the foremost infectious disease in the United States, Lyme disease is also fairly preventable. And, because spring and early summer mark peak times for the spread, now is a prime time for its prevention. Eliminating the habitat for mice surrounding your home, such as wood and brush piles, can help prevent disease transmissions. Maintaining a neat lawn can also help. Aucott recommends creating a wood chip-border between the lawn and any surrounding woods. Hikers
should stay on well-groomed paths and check themselves for ticks—particularly in hidden places like the groin and underarms—after any outdoor excursion that may have left them exposed.
---------------------------end article--------------------------------------
And here is the bio of one of their docs:
--------------------------begin bio--------------------------------
[name omitted here]
Education and Training:
B.S., Medical Technology, University of Maryland at Baltimore School of Medicine
M.D., University of Maryland at Baltimore School of Medicine
Residencies:
Anatomic Pathology: Johns Hopkins University School of Medicine
Laboratory Medicine: Johns Hopkins University School of Medicine
Pathology: University of Texas Medical Branch, Galveston
Postdoctoral Fellowship, Infectious Diseases: University of Texas Medical Branch, Galveston
Professional Interests:
Vector-borne pathogens and tick-borne bacterial diseases
Anaplasma (human granulocytic anaplasmosis)
Borrelia (Lyme disease and relapsing fever)
Ehrlichia (human monocytic ehrlichiosis and ewingii ehrlichiosis)
Rickettsia (Rocky Mountain spotted fever, typhus)
Medical parasitology, especially hemoparasites
Plasmodium species (malaria)
Babesia species (babesiosis)
Trypanosoma brucei gambiense and rhodesiense (African sleeping sickness)
Medical entomology (ticks, lice, fleas, mites)
Molecular diagnostics of non-viral infectious diseases
Research:
Current research focuses upon the host-pathogen interactions of obligate intracellular tick-borne rickettsial bacteria of the genus Ehrlichia and Anaplasma, and interactions with the spirochete Borrelia burgdorferi that causes Lyme disease. Most work focuses on Anaplasma phagocytophilum that causes human granulocytic anaplasmosis (HGA). The bacterium that causes this increasingly recognized disease has successfully adapted to an endosomal compartment of neutrophils. The bacterial cellular and molecular mechanisms of adherence and entry, and the mechanisms by which the bacteria manipulate the host cell are major areas of study.
One significant focus is on AnkA, a protein injected into host cells that is transported to the neutrophil nucleus where is binds to DNA and proteins and may directly influence eukaryotic gene transcription. AnkA appears to act predominantly as a matrix attachment region binding protein and may be an important epigenetic factor in altering the host neutrophil’s transcriptional program conditioning the cell as a more hospitable environment for the intracellular infection.
In addition, we have developed a murine [mouse] model of granulocytic anaplasmosis that has allowed us to show that most histopathologic changes characteristic of human and mammalian disease caused by this bacterium are mediated by host inflammatory and immune responses rather than by direct pathogen effects, for which the underlying mechanisms of tissue injury are major areas of interest.
The laboratory uses a multidisciplinary approach to investigation, melding new molecular and cellular biology tools with standard microbiologic, histopathologic, and immunologic studies to discern mechanisms of disease by these unique bacterial pathogens.
Recent Publications [just scan this list .. it's pretty dry]:
Scorpio DG, von Loewenich FD, Göbel H, Bogdan C, Dumler JS. Innate immune response to Anaplasma phagocytophilum contributes to hepatic injury. Clin Vaccine Immunol. 2006; 13:806-809.
Dierberg KL, Dumler JS. Lymph node hemophagocytosis in rickettsial diseases: a pathogenetic role for CD8 T lymphocytes in human monocytic ehrlichiosis (HME)? BMC Infect Dis. 2006 21; 6:121
***Wormser GP, Dattwyler RJ***, Shapiro ED, Halperin JJ, Steere AC, Klempner MS, Krause PJ, Bakken JS, Strle F, Stanek G, Bockenstedt L, Fish D, Dumler JS, Nadelman RB. Infectious Diseases Society of America Practice Guidelines for Clinical Assessment, Treatment and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis. Clin Infect Dis 2006; 43:1089-1134.
Choi KS, Scorpio DG, Barat NC, Dumler JS. Msp2 variation in Anaplasma phagocytophilum in vivo does not stimulate T cell immune responses or interferon-gamma production. FEMS Immunol Microbiol 2007; 49:374-386.
Choi KS, Webb T, Oelke M, Scorpio DG, Dumler JS. Differential innate immune cell activation and proinflammatory response in A. phagocytophilum infection. Infect Immun 2007; 75:3124-30.
Dumler JS, Barat NC, Barat CE, Bakken JS. Human granulocytic anaplasmosis and macrophage activation. Clin Infect Dis 2007; 45: 199-204.
Choi K-S, Dumler JS. A mitogenic component in polar lipid-enriched A. phagocytophilum membranes. Clin Vaccine Immunol [in press].
--------------------------end bio-------------------------------------
Sounds like he's a serious guy. He seems to have collaborated on an article with Wormser and Dattwyler (see above) who are notorious Lyme-deniers, but that doesn't mean the doc himself is stupid.
I'd give it a try! See what happens and then chart your next steps from there.
If nothing else, they will rule out everything you *don't* have, and if they do not come up with a positive diagnosis of Lyme or something else, at least your list of things to consider is a good bit shorter.
Hang on, keep us posted -- we're rooting for you. J.
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