Hey there, my name is Ryan... I'm 19 years old and in the past month and a half i've been experiencing tons of symptoms that have gone undiagnosed on numerous occasions and a lot of them seem to be common symptoms of Lyme. One night I had a really bad panic attack out of no where... thought I was having a heart attack, called the ambulance.. and they told me not to worry cause the EKG came back normal and everything was fine. This happened to me around 3 more times in that same week, can't remember the exact days but yeah.
After that week I suddenly started to feel numbness in my whole right leg. This, once again caused me to panic cause i thought maybe i had a blood clot or something.. so i went to the hospital. They did "routine" blood work on me and told me that everything seemed fine.. so it must be a neurological issue. They did a catscan and MRI, both of these came back normal as well. And by the next morning when i woke up, i didn't seem to have any numbness in that leg anymore.. the only symptom i had was shortness of breath and a bit of difficulty breathing while laying on my back.
Anyway... from that point until now i had been experiencing numbness and tingling in my hands, and feet, pain in my knees and elbows... lots of stiffness in my back and neck, frequent pressureful headaches, rapid heartbeat at random times, a chronic cough, and lots of ear pain.
I went to an "Infectious Disease Specialist" that's in my neighborhood, and she said that it was impossible for me to have Lyme because I didn't get the rash, and my bloodwork came back negative.
Does anyone know if this could be something else?? a viral infection of some sort maybe??
Help please. None of the doctors I have been going to can seem to diagnose me on anything, and the symptoms are persistent ...
Also.. Let me add that in early September I had taken a trip to Pennsylvania for a week with my buddies (live in NY) so i don't know if that could have anything to do with the occurence of these symptoms but just throwing it out there
Welcome to MedHelp -- sorry to hear what you're going through, but I think you are asking the right questions -- and I would keep looking for answers that make sense to you.
Lyme is a tricky thing: the medical community is in disarray, and that means patients are left to fend for themselves. That's what you're running into. Mainstream medicine firmly believes it has a handle on Lyme and the other 4-5 diseases the Lyme ticks also carry about half the time. This will, I think, eventually change, but entrenched opinions are difficult to change.
The same docs who 'discovered' Lyme about 30 years ago are still active in the medical community, and they have a headlock on the main group that infectious disease docs (and other docs) look to for setting standards of diagnosis and treatment for all infectious diseases: the Infectious Disease Society of America, or IDSA. The infectious disease doc you saw is following the IDSA party line, that you have to (1) see the tick, (2) know that it's been attached for at least X days, and also (3) get a circular rash, and THEN they will diagnose you with Lyme. Without those three factors, an IDSA-type doc will commonly refuse to diagnose Lyme, as your doc did.
There are however other docs who have followed the research over the years and have an updated view of how to diagnose and treat Lyme. These docs often belong to a competing organization called International Lyme and Associated Disease Society (ILADS). The IDSA-type docs think the ILADS-type docs are completely wrong, but patients who have been diagnosed and treated to the ILADS standards see things differently.
An ILADS doc understands that the ticks are SO tiny (the size of a period at the end of sentence) that many of us never see the tick (I never did), and many of us don't get the red, circular rash your doc said is a requirement to be diagnosed with Lyme. Sometimes it's because your immune system doesn't react in such a noticeable fashion, or because the tick bit you somewhere you didn't see the rash, like on your scalp. I never saw tick OR rash. Also, ILADS docs know that about half the time, the Lyme ticks carry not only Lyme, but also other separate diseases that need separate testing and diagnosis, and often different antibiotics from Lyme.
Everyone's symptoms are different to some degree, because everyone's immune system reacts differently, so the requirements of seeing the tick and knowing exactly how long it was attached are the beginning of the discussion, not the end. But not all docs see it that way, and the IDSA docs talk about ILADS docs like they are all dangerous quacks.
If we were talking about the common cold, it might not matter so much, but Lyme is a serious illness and will not go away by itself. The symptoms you are experiencing are not uncommon, but not everyone gets the same set of symptoms, so don't be surprised if you read about others' experiences being somewhat different.
Finding a doc who thinks more progressive thoughts about Lyme is, in my personal experience and opinion, the best thing to do ... and frankly, the only thing to do. You'll see the term 'LLMD', which is not an official title but instead patient slang for a doc who thinks broader thoughts about Lyme than a regular doc, and is therefore a 'Lyme-literate MD.' Docs don't call themselves 'LLMD', and an LLMD can be any specialty or a GP (general practitioner) -- it's understanding and wisdom that count.
In some states (like Texas), the state medical board makes serious trouble for LLMDs, so in those states, it's hard to get treated fully and appropriately. As far as I know, NY is less rigid and there are some excellent LLMDs in that area. An LLMD doesn't have to be a member of ILADS, but it's usually a good sign if a doc IS an ILADS member. If you email to:
contact [at] ILADS [dot] com
and tell them where you are and how far you can travel, they can send you names of LLMDs nearby. Those docs are not guaranteed to be good and sensible, and some of them are a little edgy, so if you feel like the doc is a bit far out there, then find another. Here's some good news: at Columbia U in Manhattan, there is an excellent Lyme disease research and treatment center headed by Dr Brian Fallon. They are cutting edge, and I personally would not hesitate to contact them to see if they are able to see you; if they don't have room, ask them to recommend an LLMD if they can do so.
I encourage you to get your family involved to help you sort all this out, because you have your hands full being sick, and vetting Lyme docs is something it's good to have help doing.
The sooner you are diagnosed and treated, the better -- not just for the obvious reasons of feeling better, but also because the longer you wait, the harder it is sometimes to kill the infection(s). If you have Lyme, it won't go away by itself. Treatment is usually measured in months, not days, because Lyme has a very slow reproductive process, and it is when dividing that bacteria are most susceptible to antibiotics. There's more, but I'll spare you the rest for now.
Bottom line, I think you are asking all the right questions, and having been through Lyme myself, I would (in your situation) find an LLMD without delay. The sooner you are treated, the less burrowed in the bacteria are and the easier it is to kill them.
Best wishes to you -- let us know if we can help further, and if your family has questions about our personal experiences with Lyme and finding a Lyme doc, we're happy to answer those too.
Thank you so much for all your information and help, it means a lot. You're the man... thanks for caring. I've just sent an email for some info on finding a good doc in the city. Will keep you guys posted.
We're glad to help -- if you have family/friends you can rely on to help or at least listen to you through all this, that's a very good thing.
Lyme (if you have it, or whatever else you may have) is very hard not only on the body but also the mind and soul -- specifically Lyme messes with the whole endocrine (hormonal) system and affects mood as well as cognition (thinking and reasoning), not to mention the nervous system, muscles, joints, you name it.
So don't be a hero -- let people help you get through this -- you can do it, but it goes better with help. Take care -- keep us posted!
You really do sound a lot like a case of late stage Lyme. It is just unbelievable that a doctor in one of the most Lyme endemic states in the country would still think that a rash is required for Lyme. There is plenty of evidence that only about half of patients get a rash of any kind.
Get thee to an LLMD! Since you have most likely tested false negative, an LLMD is the only way you'll get the treatment you need.
P.S. If you want to learn more about how so many people test false negative for Lyme, you can Google "Tom Grier Lyme" and read his articles explaining testing to lay people. You can also check out IGeneX, where most LLMD patients get tested. I tested false negative, too, but Igenex found evidence of Lyme antibodies in me, as well as Bartonella.
PS about 'late stage Lyme' -- don't worry about that wording ... it just means an established case that you've had for a while. A Lyme infection can be a bit harder to treat the longer it has been in place, but only because the bacteria are all settled in and comfy. "Late stage" is not like 'late stage cancer', because Lyme doesn't work that way. It would probably be better to call it 'late stage Lyme' --> 'established case of Lyme' or something like that.
Yeah, im actually having a bit of a rough time trying to find an LLMD in my area (the city).. I emailed ILADS and tried to email the Lyme Assiociation to get recommeneded doctors, posted on the forums of a couple website (got 2 replies but too far for me) .. Anyone know how long it will take for ILADS to get back to me? And i was supposed to email them, correct?
Also... as far as the whole "late stage lyme" thing goes. I went to this website that had all the possible symptoms of lyme and out of 46, I had 37. It's strange though, because all of the symptoms have just recently been surfacing.. Like literally every symptom started around just a month ago.. and have been increasing pretty fast
Last night i actually started to notice tremors. Something I haven't had before... My lower back feels like its slightly shaking a bit at random times, and i find myself trying to stop myself like "what the hell.. why is my back moving like that?"
But yeah.. thanks for the help, no one is even taking me seriously honestly. I live with my parents and brothers... and I had a series of panic attacks before all the symptoms came up, and since the doctors in the hospital were telling me and my parents that its anxiety my parents are now convinced too... that its just anxiety.
I tell everyone like... "how am i experiencing really bad joint pain and shortness of breath.. and a difficulty breathing while laying down, and low stamina from an anxiety related issue?" and i just don't get why no one believes me or wants to listen to me.
I think ILADS gets back to you pretty fast, in a couple of days, but since it's Friday already, probably next week. It's hard to get recommendations online, because here and elsewhere, those with Lyme tend not to post in public the names of Lyme docs so the local/state medical boards don't try to pull their medical licenses for supposedly overtreating. It's just one of those wacky things about Lyme: through the looking glass, like Alice in Wonderland, where everything is backwards and strange. There are docs out there who follow their consciences and treat patients as the docs see fit. (You're lucky you're not in Texas: the state medical board is really harsh on LLMDs and there aren't very many of them there as a result.)
So hang on a couple of days and ILADS will be back to you (yes, email is the way they say they will contact you back). Also troll other message boards like this one and see what you can scoop up.
You might also do a search online like "LLMD NYC" and see what you get.
It's not necessarily strange that you are noticing symptoms now. The Lyme bacteria are tricky, and even the LLMDs are still learning how to cope with their tricks. You might try taking magnesium (Mg) supplements -- Lyme bacteria need Mg in their reproductive process, and it can get to where they use up so much of what you have stored in your body that you get symptoms like twitching and heart palpitations (since the heart is a muscle too). Also the American diet is said to be low in Mg, so it's easy to run out of it when Lyme is using up your stores.
I've read that any kind of magnesium ending in "-ate" is most absorbable, like Mg malate, orotate, aspartate, citrate, etc. The one that is not recommended is a combo of calcium and magnesium (called 'Cal-Mag') because (so I read) the Mg part of it is junky magnesium and doesn't absorb into the cells properly. Mg is available pretty much everywhere, like drugstores, vitamin shops, online, etc. I tried a couple of different formulations/brands till I found one that I felt best on, and I still take it. Be sure to tell the Lyme doc you see what you are taking, what kind of "-ate", how much, and since when, so the doc can factor that in to your exam.
It's really hard for people who haven't had Lyme to appreciate and understand what misery it is and how it just comes out of nowhere and smacks you upside the head. So I'm not surprised your family isn't tuned in ... nobody is till they have to deal with Lyme themselves. If I didn't mention Burrascano's treatment guidelines above, I should have -- Dr Burrascano is one of the best known Lyme docs -- he's had his own problems with coming up against the Powers That Be, who deny that Lyme is serious and widespread and more than a minor annoyance.
His office is I think in East Hampton. Google/search 'burrascano lyme' and you'll find lots of links.
There are many other docs who also treat Lyme and aren't as notorious as Burrascano is -- he's just not afraid to go head to head with the Powers That Be, and that's the only reason I put his name here, because he's already outed.
The ILADS website has Burrascano's treatment guidelines posted, but they're pretty detailed and when I was first sick I had trouble figuring out how to turn the computer on, much less read medical stuff. So don't feel obligated to read the guidelines, but they are there if you are interested, and at a certain point your family may be interested too.
Like most of us, your family was raised to trust docs and believe that the docs know all, and are humble enough to admit when they don't. Unfortunately, docs ARE just human, and they are proving that when it comes to Lyme. In the docs' defense, they are accustomed to trusting each other to uphold the highest medical standards, but Lyme is an exception to that noble standard, and we the patients are paying the price. It feels creepy to challenge a doc, who is sworn by the Hippocratic oath to 'First, do no harm' -- when by neglect, they can and do cause harm to Lyme patients who are ignored as you apparently have been and as I was and as many if not all of us here on this board were ignored.
This is the long way of saying your family wants the best for you, and the docs they trust are saying it's 'just anxiety' -- but docs can be wrong and ill-informed. Keep you family informed and explain to them what you're learning in your reading. Send them to the Columbia U Lyme center page and see if they then gain some respect for the other side of the Lyme argument. Till you see a doc who understands Lyme and its co-infections, you won't have proof for your family, so it will be a process.
I just google/searched
columbia university lyme
and got a bunch of good hits, the first one being the columbia-lyme [dot] org site, which is excellent. Then scroll on down the search results and see other things that mention Columbia and lyme as well, like FAQs on Lyme. Columbia is hardly a crummy school nobody's ever heard of, and it's a blessing that the Lyme research Fallon and others are doing are is at Columbia, because IDSA (Lyme deniers) can't ignore Columbia's credibility and call them quacks.
Enough from me, you take care, let us know how you're doing and if we can help by sharing what we've all learned along the way. Lyme is real, it produces real suffering of many kinds (mental, physical, emotional, social), and the medical community has totally dropped the ball, except for some docs like Fallon and places like Columbia. Hang on! It gets better from here.
Star, It looks like Burrascano is currently licensed in NY State --
I just went to the NY State medical license verification website and found this, indicating that Burrascano is licensed in NY state as of 12-15-2012 (today):
License Information *
Name : BURRASCANO JOSEPH JAMES JR
Address : WATER MILL NY
Profession : MEDICINE
License No: 145623
Date of Licensure : 04/03/81
Additional Qualification :
Status : REGISTERED
Registered through last day of : 09/13
Medical School: NEW YORK UNIVERSITY Degree Date : 06/01/1978
Not a problem. I think it was mentioned in "Under our skin", and also in "Cure Unknown"
It is serious problematic for people who lives in NYC and surrounding area to find a LLMD. They are either booked for months or too expensive, with one exception. So, not a lot of choice of LLMDs to select from within 3 hrs drive radius. It is very absurd considers the fact the area is one of high epidemic areas in the country.
Okay so... ILADS emailed me back with 3 doctors, 1 accepts my insurance and is located in Manhattan, and i got another one that is located in Manhattan from someone else tha tprivate messaged me... gonna give them both a call tomorrow to try to set up appts as soon as possible.
Also... an update on my symptoms. I now seem to have somewhat of a shingles outbreak on my back... I had them 8 months ago too... took anti viral meds to get them to go away... could Lyme cause a shingles outbreak to occur?
About the 'somewhat of a shingles outbreak' -- can you take a cell phone picture of it NOW so that you can show it to the doc when you get there? Picture worth a 1000 words and all that. I'm no doc, and wouldn't know one rash from another, but Lyme and its little buddies can masquerade as other things, and it might be VERY useful to the doc you see to have a photo. Don't wait, do it while the rash is still strong.
If it does happen to be shingles and not directly Lyme-related (meaning Lyme or a co-infection), it could be that your immune system is so busy fighting off Lyme that it can't also keep the shingles at bay.
In any event, it's something your new doc should be aware of. There are lots of odd symptoms that can be Lyme-related but that nonLLMDs don't think to associate with Lyme stuff, so try very hard not to censor your symptoms by trying to boil the list down only to stuff *you* think is Lyme. It's what the doc is for, to take it *all* into account, so take all the data (data, photos, notes, whatever) with you, okay? Make the best use of your trip to the LLMD.
And again, good for you for plowing ahead and finding the LLMD! If the doc doesn't have an open slot soon, ask to be put on the cancellation list so they'll call you if someone backs out. Sometimes that's hard to do with an initial appointment, because they can take a bit longer, but never ever hurts to ask.
From what I remember, the "Cure Unknown" book said that Dr. Burrascano decided to close his practice. I wouldn't be surprised if the ongoing harrassment and legal costs were wearing him out. He still speaks at conferences, and I believe he has been to Australia at least once to meet with Lyme patient advocates there.
Elryano -- I can only ditto what the others said about taking pictures of any and all rashes you get. Sometime Lyme causes multiple rashes. Bartonella can also cause a shingles-like rash, although I believe a shingles rash would be quite painful. And many viruses can rage forth when Lyme suppresses the immune system, especially those in the herpes family, which includes the one that causes chicken pox & shingles. Some Lyme patients even test positive for mono. A good LLMD can help you figure out what's causing it.
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