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!
That doc is a keeper. Anything ending in "-ectomy" means taking the thing out, like appendectomy is appendix + ectomy = taking out the appendix. I'm guessing they would then send samples to the lab for analysis.
BUT first search for
--- lyme disease lymphadenopathy ---
Here's the first hit in the results:
"Lyme disease bacteria take cover in lymph nodes, study finds"
June 8, 2011
The bacteria that cause Lyme disease, one of the most important emerging diseases in the United States, appear to hide out in the lymph nodes, triggering a significant immune response, but one that is not strong enough to rout the infection, report researchers at the University of California, Davis. [UC Davis is a good school, btw.]
Results from this groundbreaking study involving mice may explain why some people experience repeated infections of Lyme disease. The study appears online in the journal Public Library of Science Pathogens at: http://tinyurl.com/3vs8pm9.
“Our findings suggest for the first time that Borrelia burgdorferi, the bacteria that cause Lyme disease in people, dogs and wildlife, have developed a novel strategy for subverting the immune response of the animals they infect,” said Professor Nicole Baumgarth, an authority on immune responses at the UC Davis Center for Comparative Medicine.
“At first it seems counter intuitive that an infectious organism would choose to migrate to the lymph nodes where it would automatically trigger an immune response in the host animal,” Baumgarth said. “But B. burgdorferi have apparently struck an intricate balance that allows the bacteria to both provoke and elude the animal’s immune response.” ...
Swollen lymph nodes, or lymphadenopathy, is one of the hallmarks of Lyme disease, although it has been unclear why this occurs or how it affects the course of the disease. The UC Davis research team set out to explore in mice the mechanisms that cause the enlarged lymph nodes and to determine the nature of the resulting immune response.
They found that when mice were infected with B. burgdorferi, these live spirochetes accumulated in the animals’ lymph nodes. The lymph nodes responded with a strong, rapid accumulation of B cells, white blood cells that produce antibodies to fight infections. Also, the presence of B. burgdorferi caused the destruction of the distinct architecture of the lymph node that usually helps it to function normally.
While B cells accumulated in large numbers and made some specific antibodies against B. burgdorferi, they did not form “germinal centers,” structures that are needed for the generation of highly functional and long-lived antibody responses.
“Overall, these findings suggest that B. burgdorferi hinder the immune system from generating a response that is fully functional and that can persist and protect after repeat infections,” Baumgarth said. “Thus, the study might explain why people living in endemic areas can be repeatedly infected with these disease-causing spirochetes.”
In addition to Baumgarth, members of the UC Davis research team include Stephen Barthold, director of the Center for Comparative Medicine; Emir Hodzic, director of the Real-Time PCR Research and Diagnostics Core Facility; staff scientist Sunlian Feng; graduate student Christine Hastey; and Stefan Tunev, formerly of the Center for Comparative Medicine and now at Medtronic Inc.
Funding for the study was provided by the National Institute of Health.
In your situation, before having surgery, I would go find a good Lyme doc, taking copies of all your tests to date, but I'm not medically trained -- it's just what I would do.
Let us know what you do and how it goes. Best wishes! This is progress, believe it or not!
I also had lymph node pain and cystic breasts for years before my Lyme dx. I get a deep massage about once a month that helps with my lymph problems. If I don't go, my body gives me a painful reminder!
Thank you all so much for the encouragement and reassurance! I get so scared lately that I'm just going downhill rapidly... Yet slowly. Does that make sense? I'm too sick for regular doctors to help me, but not sick enough to be taken seriously by the ER. And forget the specialists, it's a month to wait for an appt, then a month to wait for tests, and so in and so on. I can't figure out why this nightmare won't end already. Blah, sorry I am literally becoming a severely depressed mess over all of this.
I asked my regular doctor if he would go ahead and do the Igenex testing for me, but he said that he wants me to keep doing everything through Hopkins stating that I shouldn't spread testing between too many doctors. He really doesn't get that while I have seen a clinical intern at Hopkins that doesn't automatically make him my new GP. Ugg! He just thanked me for the update and then asked me to let him know what Hopkins discovered. Basically, he dropped me? Can doctors do that? "I don't know what's wrong with you? Good luck with that! By the way thanks for dumping a lot of money at my feet for the past 10 years. Have a nice day!" What the what???
Again there's the LLMD on may 1st and my lymphectomy through Hopkins whenever they schedule that. How long does it take to get Igenex lab result? I'm not sure if I've admitted to you guys yet or not but I'm down to 93 lbs (30 lbs without a change in diet and I don't have the strength to do anything more than stretch). Why don't the doctors think this is as serious as I do?
Omg, so sorry to vent so much!
We are here for you to vent to. I was kicked out of one of my doctors offices but she blamed me because I wanted answers and she couldn't just say I don't know what is going on. All my blood tests were abnormal by that time.
We get treated badly and its unfair. I lost 40 lbs during my first month of being very sick and then I put on lots of weight due to the Lyme affecting my thyroid. I am ok now as far as weight goes.
I would wait to have the lymphectemy until after seeing the LLMD since swollen glands are part of Bartonella.. I wish you the best and feel free to vent to us whenever you need to.
Thank you so much mogogal! I can't telll you how much this forum has meant to me throughout all of this. I wish I had found you all sooner.
Another positive note: My husband's lawyer just asked him how I was doing. My husband said that my health is deteriorating and that I have an upcoming lymphectomy, but we suspect Lyme to be the culprit. The lawyer said that he often sees cases of misdiagnosed Lyme and recommended a doctor. I called the doctor's office today and she is actually a LLMD that takes insurance! Can you believe it?! I was connected to a specialist in her office who laughed when I said that the doctors don't know what to make of the fact that I only tested positive for the P23 Lyme antibody band and have 170+ of the symptoms. She said that she was not surprised that the doctors don't know anything about Lyme disease and treatment, stating that most doctors are clueless. I was able to get an appt. next Monday!!! I can't believe my luck! I hope this is the beginning of treatment and a healthy me! I know I have a long tough road still ahead of me, but at least things don't look as hopeless as they have for a long time now. Good news, good news:)
Lymphectomy was scheduled today for May 3rd. I am so stinking nervous! I am so scared, I keep telling myself that it's Lyme (believe it or not I'm more scared of cancer than Lyme though neither is a winning situation), but I can't get certain symptoms out of my mind that sway towards cancer:
Unexplained weight loss (no change in diet, diminished activity)
Enlarged lymph nodes growing larger for approx 2 years
Pain in chest closer to the back paralleling my esophagus (feels like medistinal lymph nodes swelling)
Pain in the bottom of feet especially in the morning with no B 12 deficiency
High blood calcium
Odd frequent cracking of joints (clavicle pops every time I take a deep breath)
Weird grayish color of left hand (comes and goes) (now that I think about it my largest lymph node is my left axiallary...I need to stop thinking)
I was on a medication that has "in rare cases" caused lymphoma (caused extreme bruising, hair loss, and odd posterior chest pain and lymph nodes began) stopped med after 3 months, but side effects continued to worsen
Father died at age 52 of medistinal germ cell cancer
I keep telling myself that my CBC doesn't indicate cancer, I've had a CT and it just reported shotty adenopathy (not really concerning), and every time I get the awful lymph swelling in the chest (now everyday) that I almost certainly can taste mucous excreting in my throat, so that is more indicative of infection. Also, the US of the lymph node that they are removing was said to have texture indicative of infection, not lymphoma.
All of this great news and yet I can't stop my fear! Probably due to all of the "ct scan missed my lymphoma" posts on the web. Oh ye web can be a helpful yet scary place. Also, I have constant sinus drainage and extreme lymphatic pressure. I don't know that those are symptoms of lymphoma, but I don't really go looking for the symptoms either bc it's too scary. I just can't imagine that if it's infection, even Lyme, that my nodes wouldn't wax and wane at all, though.
Ugg, I hope you guys don't think of me as a complete paranoid nutball, but I don't want to bother my husband with all of my fears. I just can't hold my fear in and desperately want so much for someone to tell me it'll all be ok.
Sorry again for a whiny post! Gosh I will be so glad when everything is definitive. Please help me ease my mind, even if you have to lie;)
Did you ever think you'd type a reassuring post that "it's just Lyme".
I don't think you are whiny at all. I think you are handling the situation with considerable reason and grace -- and that is no small feat.
You express your anxiety and concern so well, and it is all very very understandable. If you were just blowing it off by suppressing all the concerns, it would be worse for you to keep it bottle up, and not only do you express your concerns so well, you are very logical and reasonable at the same time. Let's put it this way: I'm a lot crankier when I've had a bad day at work than you are while dealing with this illness. Points to you.
I am especially touched that you are trying not overload your husband with your concerns. That is a lovely thing, and he is a lucky man to have you.
Did you see the LLMD yesterday? Your message on the 12th said you would see him 'next Monday' -- which would have been the 15th, if I counted correctly. This being the end of the day of the 18th, wondering if you had the appointment yet and how it went.
We're rooting for you -- I think you are showing great fortitude in the face of some fearsome things. Hold on -- we're with you.
Thanks, again Jackie! I had the appt with the would-be Lyme doc, but she just happen to be a doc that believed in and treated Lyme with 4 weeks of doxy, so it ended up being a complete waste of time. I never canceled my appt with the ILADS recommended LLMD though. It is may 1st, but a member here recommended another LLMD that I will try again to call today. I could hack the joint paint, dizziness, mild fever, random swelling, muscle cramps, twitches, general pain and fatigue, it feels as though someone is hammering rocks into my neck and chest where these lymph nodes are. Pain meds aren't even touching it. I feel it all night while I sleep and keep waking up clawing at them because I desperately just want to rip them out of me.
Thank you for letting me lean on your shoulder, in the meantime. I appreciate all of you here, more than you know!
Good for you for pressing ahead on all fronts -- and while you feel so lousy too. I would do what you are -- keep the appointment that's farther out until you see the earlier doc, and then cancel the farther out one if you are satisfied with the earlier one. Like you've got the energy and focus to do all that, I know. Hang on, this is progress, and I would do what you are doing.
Sorry the first doc didn't work out. Hopefully you'll be happy with the ILADS doc. Everything you describe can be attributed to Lyme and possibly coinfections. Lyme can be truly miserable with a variety of scary symptoms. My doc was talking cancer and sarcoidosis before I asked him about Lyme. Anxiety is a symptom and I know how hard that is to manage. Just take one day at a time. And if you can get in to see an ILADS doc sooner, go for it.
What eventually makes the symptoms go away is treatment for Lyme.
P.S. Sore soles of the feet (especially in the morning) is often an indicator of Bartonella, a common coinfection of Lyme. Be sure to mention this to your upcoming LLMD.
P.P.S. Have you seen the Burrascano checklist? It's in his Diagnostic Hints... document on the ILADS site. Click on ''About Lyme' and then 'Treatment Guidelines'. Scroll down several pages and you'll find the symptom list.
Just after I found out that I tested positive for IgM P23 band, I printed out Burrascano's "Advanced Topics in Lyme disease" and did the checklist. I actually have an asterisk mark next to "symptom flares every 4 weeks" bc my doctors were always puzzled when I mentioned it. It was a giant aha moment for me! Now that I glance over the checklist again #1 says "persistent swollen glands"! I guess I need to read over the checklist everyday, so that I can get it through my head. It's very difficult not to humor doctors scary hypotheses that I have things like sarcoidosis or lymphoma. Guess I should put an asterisk next to #20 "paranoia". LOL *sigh*
PS just realized I didn't say "thank you", Ricobord! Reexamining the checklist was just the advice I needed today:). Also, bartonella symptoms keep coming up in a lot of my posts, so I will definitely mention it to my LLMD. Only a week and 2 fays until my appt. I hope test results don't take too long. I've been on the wait list for over a month, so I don't think it's likely that I will be seen sooner.
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)
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?
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!
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.
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.
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. :)
Ricobord...Thanks again for all of your effort! The fact that you took the time to find those possible diagnoses means the world to me! I will research them more and pose the possibilities to my docs.
I had an appt with my new PCP today (since my old PCP dropped me). This is my second time seeing her. The last I saw her she was adamant that I had MS. This time she noted the enlarged lymph nodes and felt around for any extras. She said with my laundry list of symptoms, she thinks that I do, indeed, have Lyme, but is miffed by only testing positive for the P23 band. She referred me to the ID clinic at Hopkins stating that she thinks that the upcoming biopsy and a lumbar puncture are my best hope for a diagnosis. She also sent me for an US of the right axiallary node since it is strongly palpable. So I went back for my second US after my appt today, this time of the right axiallary. The same doctor was there to do the imaging. She was suprised to see the right axiallary so enlarged as well, I will not have her report with official measurements until later this week. I know that it was large, but not as big as the left. She curiously reexamined the left axiallary. She measured an additional enlarged one in the left and noted the 2.5 cm towards the breast was still grossly enlarged. Her and her colleague were also intrigued by the artery in the axiallary as it was "really big" as well. It was so large that it took them a while to discern what it was. She said that she would note the artery finding in the report as well. Yay! Things just keep getting crazier. Also, the new PCP found a large abdominal hernia, RUQ, that pokes through my abdominal muscles near the belly buttom. I think I am falling apart! However, she didn't say anything else about it. Anyway, the imaging doctor remains firm in her belief that though the nodes are very large they appear "reactive" and not indicative of any form of cancer! Again, she said "I think it's Lyme. I'm sorry that you have to get the lymphectomy, but it should give you a diagnosis finally and as big as it is, it should also make you feel a little better once it is removed."
I trust the images and the radiology doctor more than the dozens of doctors that I've seen. If she says it looks reactive than it is definitely some sort of infection or inflammatory illness. Since my SED rate and ANA are repeatedly low, then there is strong evidence that this is infection and only infection. I'm sure that my worry might spike again around the time of the lymphectomy, so bear with me, but for now I'm resolved that next Wednesday's appt with the LLMD is the best place for me and not "oncology" like I was scared into thinking for the past couple of days.
Thanks again for your continued support! I know my husband is also relieved that I have you all to come to, as well!
I hope it went well! I also hope they sent it in for Borrelia testing. The LymeMD blogger has not had nice things to say about docs at JH regarding Lyme. The head of ID at JH is particularly vocal about criticizing the chronic Lyme crowd and adhering to the IDSA guidelines. He said he works in the Lyme clinic at JH and sees lots of patients with all kinds of symptoms, but many of them don't have Lyme like they claim (because they test CDC negative). Sigh.
Glad your new PCP thinks it's Lyme. That must feel reassuring, along with the radiologist report leaning towards infection. I think you're on the right track!
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