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Avatar universal

Possible lymes with a lot of weird symptoms

Hello all I have some questions. Couple weeks ago I was fine except for ringing in my left ear and headache since August. I did have some joint pain but I lift weights and thought that was the pain and still could be. Now 2 weeks ago I was asleep and woke up with a crazy high heart rate, felt like I was gonna die. Scared me really bad. Got really weak and nervouse. It happened 3 more time next day so I went to the ER. Of course all things heart and thyroid came back normal. 3 days later started losing feeling in left arm with tingling. Went to dr they said panick attacks. No way I'm very calm person.  So 2 more days later had what I describe as something attacking my body. Lymphnodes would swell up and huge pressure through my head ears and eyes. Left arm would tingle and somewhat hurt near my elbow and wrist. Also felt like I was losing little feeling in my left leg. Breathing felt like was not right. Suddenly I remembered I had been bit by a tck in August. I pulled it out of my leg. It was itching that's how I found it. Don't think I ever had the rash but I did get a rash on my body in random spots that went away. Called dr and they said yes my symptoms do reassemble lymes. Test came back negative. I never saw the results just a letter from dr. Dr also never took next steps to finding what's wrong. Well symptoms got worse started getting tingling in left side of back and ringing more intense. Pressure in face head neck would just come on intense. Face even went numb  by this time its a week since the heart stuff  no more heart issues  Burning feeling in arm and neck also. Went back to dr and he basically would not listen and said I needed a neurologist. Well that appt is not till feb 10 2014. I went off. Told him that he needs to treat the symptoms not the test.  He would not test again. Now I know there is even a law past on lymes here in Va stating 50% test can be negative and I am supposed to receive a notice. Asked bout that and he seemed embarrassed. So in the end he did prescribe me 100mg twice day doxycycline. In line to get the meds I almost past out. Ended up in ER with ct scan. All things fine again. I have lost 12 pounds in 2 weeks. Had bad sweats at nite during all this. Weird bursts of energy at times. Fatigued at times. Even fine at times. Really odd at times I eat a big meal the symptoms would come on strong.  So to end the long story this is where I'm at. On meds feel ok at times, sick at times. Just wanna make sure I did the right thing by pressing the dr. He did talk with another dr and they both agreed this was next step. But it took me calling and going in 4 times in 2 weeks for them to listen.  I did have tick in me, I know there doesn't have to be a rash or even have tick on you. Thanks
44 Responses
Avatar universal
Also I do not take supplements. Do not smoke. 35 years old. Eat healthy. Drink water. Oh yeah seem to be dehydrated at times to and water runs right through me. Tested for diabeties neg. on paper I'm healthy as can be.
Avatar universal
Oh and slight memory issues more of short term forgetfulness. Had dual pain in left dude of chest could be indigestion.
Avatar universal
Also shouldn't they have done more test?
Avatar universal
Dull pain in left side chest. Still have it
Avatar universal
Told ya memory is slow. :) also have some dizziness at time like when you cross your eyes.
Avatar universal
Welcome to MedHelp --

You give a good history -- having all that in mind to communicate to a doc is very helpful.  My memory got a bit dodgy when I had Lyme, so if you feel forgetful about the details, print down what you posted above and take it with you when you see ... an MD who is a Lyme specialist.  I can't know that you have Lyme, but ... I would certainly find a Lyme specialist and confirm it one way or the other.  

The hardest part sometimes is finding a doc who understands Lyme, as too many docs do not.  For example, the 'standard' treatment for Lyme is a few weeks of doxycycline in the dose you were given.  Unfortunately, there are reasons I won't detail here why that may not be enough of the doxy AND may not be the right medication at all.  There is currently a serious split in the medical community about Lyme -- where it exists, how common it is, how to diagnose it, and how to treat it -- in other words, the whole illness is unfortunately the subject of a big controversy in the medical world.

From my experience as a Lyme patient and what I have read and heard, your experience with the doc you mentioned is all too common -- his approach is not up to date with recent research and treatment.  There is a huge split in the medical community about Lyme:  one side says Lyme is rare, hard to get, and easy to cure with a couple weeks of doxy; the other side knows that Lyme has spread pretty much everywhere, is easy to get (many of us, including me, never saw a tick or had a rash), and Lyme often comes along with other infections the 'Lyme' tick carries about half the time, including babesiosis, ehrlichia, bartonella, and a few others.  These 'bonus' diseases usually require different testing and treatment than Lyme.  

You are one of the 'lucky' [not] few who saw the tick and rash.  That makes the diagnosis easier, because the standard tests for Lyme are not very accurate, leading to many people who are infected but are refused treatment, so having the confirmation of a tick sighting and a rash is valuable data.

So.  What to do?  There is a more progressive point of view, held by MDs who following diagnostic and treatment guidelines put forth by ILADS, short for 'International Lyme and Associated Diseases Society', a voluntary group of docs who think bigger thoughts about Lyme and its co-infections than regular docs.  

To find an MD who follows the ILADS approaches to diagnosis and treatment, email to

                 contact   [at]     ILADS    [dot]    org

and tell them what area you live in ("near Kansas City") and how far you can travel.  ILADS will send back to you the names of one or more ILADS member MDs near you.  There is no test to be an LLMD, and it is not a formal title or degree -- it is just patient slang for an MD who thinks more progressive thoughts about Lyme and its co-infections. If you don't like the first doc, ask ILADS for another name.

Lyme is the wild wild west of medicine, so there is a good bit of controversy over it, but once you find an MD who makes sense to you, you'll be fine -- just don't be afraid to change docs if the current one just doesn't seem to 'get it.'  If you want to post back here with the name of your nearest large city or part of what state you are in, someone on this site may have a recommendation and can send it to by 'private message' on this system.

--->>>  We do NOT post the names of LLMDs here in the open, because in many states, docs are not allowed to practice as they see fit, but must follow the diagnostic and treatment approaches as stated by the local/state medical boards (which often means the old-fashioned 'we don't have Lyme here' approach).  

Other states have freedom of conscience for the docs, so discretion about LLMD names is not as important there -- but just as a rule of thumb, to protect our valuable LLMDs that we need so badly, we do NOT post doc's names in the open here.  If we post some names and not others, new posters here get confused and sometimes let the cat out of the bag, and none of us can be certain that a particular LLMD is known to be 'out'.  I would not want the responsibility of having a badly needed LLMD lose his/her medical license because I spilled the beans.

If you do not already have copies of all your test results to date, think about requesting them from your docs you have consulted for this illness.  An LLMD can see things in a past test result that a nonLLMD cannot, and that can be valuable data in the right hands.

Sorry for the data dump, but you sound quite capable of handling it -- some people with Lyme have a bad case of 'Lyme brain' -- confusion, poor memory.  I had it, and it wasn't pretty.  Others have more physical aching and pains -- that's partly what confuses the docs -- Lyme (even without one or more co-infections) can present anything but a single set of symptoms, and when the co-infections are added in, the confusion multiplies.

Some/many LLMDs do not take insurance, so you may have to pay out of pocket and seek reimbursement from your insurance -- that's what I did.  

Once you get the hang of the strange world of Lyme, it will start to make more sense.  Please let us know how we can help, and especially how you are doing.  Best wishes --

Avatar universal
Thanks for the post. I like a lot of information. I felt I was more knowledgable than the dr on the subject that's why I pushed so hard. Forgot to mention that I was on 2 rounds of antibiotic in September and oct for what they thought was a sinus infection. Turns out my sinuses are perfect. Also forgot that I have drainage down my throat and get chills at random times. Also abouth a month ago I went about 2 weeks just feeling angry like my body was just pissed.  All this is hard to explain but for 2 months things have been happening and kinda seem to be adding up now. I did not have the bullseye rash but a rash on diff spots of body. Thought it was chiggers or something like that. But my first symptoms was a headache and joint pain. Like I said I lift weight fir excessive so I never thought of that as a symptom till this week. Whatever is goin on it is crazy and scary at same time. I am looking for a llmd
Avatar universal
I am some what concerned about why they did not test again and test for these other side diseases. Getting into a llmd is hard to come by in my efforts do far. Most want a referral.  But I'm trying.
Avatar universal
Most likely, only an LLMD would test for anything but Lyme, and an LLMD would likely use a Lyme test the nonLLMDs refuse to use.  

There is just a massive blind spot the nonLLMDs have about Lyme, and like a boulder in the middle of the road, you gotta just drive around it and not through it.

The basic non-LLMD Lyme tests are iffy because they rely on measuring not the presence of Lyme bacteria, but instead measuring the body's immune system reaction to the presence of Lyme bacteria -- an indirect test.  Like seeing burglar's footprints in the flower bed but not seeing the burglar.

And here's the kicker:  Lyme bacteria have the ability to *suppress the immune system* -- so a test that looks for the immune system reaction to a Lyme infection may indicate no infection at all.  Those are the basic tests most nonLLMDs use, called ELISA and Western blot.  Wiki has writeups on them if you are interested.

An LLMD often uses those tests, but also uses another one that nonLLMDs don't:  a PCR test, 'polymerase chain reaction' test.  A PCR test looks not for your immune system reaction to Lyme bacteria, but looks for bits of Lyme bacteria *DNA* in your blood.  NonLLMDs think the PCR test is not needed, relying solely on W.blot/ELISA tests, which is how true infections get overlooked.

So ... don't be concerned that the nonLLMD you saw did not run the tests again, OR use the PCR test (which comes from a lab called IGeneX, a name you will see in various places), OR test for the co-infections that come from the Lyme ticks.  NonLLMDs just don't work that way.  They have a huge blind spot, because that's what the Infectious Disease Society of America (IDSA) says is the appropriate standard for testing and diagnosis.  There is simply a split in the medical community.  NonLLMDs sneer at LLMDs and think they are quacks.  

There are also some oddball LLMDs out there, because Lyme is a fast-developing area of medicine, so if you get an LLMD that doesn't seem quite right, that's when you get another name and try again.  If you want to post here (no doc names tho!) about how it goes with your doc visit and testing, we can give you our 10 cent opinion on whether the LLMD seems too off-the-beam.  It happens.  Not often, but sometimes.

Just accept that there are two camps in the Lyme saga:  the LLMDs vs the ID (infectious disease) and other docs, like neurologists and rheumatologists.  The ID docs, neuros and rheumies are generally hardcore against Lyme being anything serious, and they commonly give a couple weeks of doxycycline and a hearty handshake, thank you, goodbye.  These docs and the IDSA have concluded that any Lyme patient who has had the usual treatment of doxycycline but still has symptoms afterward has 'post-Lyme syndrome', meaning that the doxy has killed all the Lyme bacteria, but your immune system didn't get the message and is over-reacting to the now-gone Lyme infection, so the standard ELISA/Western blot tests (which look for your immune system's reaction to Lyme bacteria, not for the bacteria themselves) continues to come back positive -- but it's a false positive.

That's why the PCR test is so helpful -- it doesn't rely on finding the burglar's footprints in the flower bed to see if you've been burgled -- the PCR test looks for the burglar.  

You'd think the medical profession would be all over a newer, better test, but this is where politics comes in:  the bigwigs at the IDSA (Infectious Disease Society of America) will have massive egg on their faces when the truth cannot be ignored any longer, but these bigwigs have built their careers and reputations on their statements that Lyme is rare, hard to get, and easy to cure, and the nonPCR tests are *Just Fine*.

Docs are human, and humans can be prideful and arrogant, and we have that in spades here.  But who suffers?  The patients.  In a few years, this will all work itself out, but for now, we patients have to bob and weave and find an LLMD.

Your screen name doesn't say what part of the country you are in.  If you want to share that here ("I live near Portland OR" or "Florida panhandle"), we might have some LLMD suggestions for you from personal experience, which we would send you by private message on this system -- but the first thing I would do is email to

             contact   [at]     ILADS    [dot]   org

and ask for a referral.  It's free to get the referral, no registration required or anything.  If the docs in your area are skittish about taking patients without a referral, it may be you are in a state that doesn't take the ILADS/LLMD point of view about Lyme.  There are some states like that, but there are ways.  

You can do a whole new post here "Need LLMD near Boise ID" or wherever, and then responses would come to you through private message.
The reason to start a new message thread is that it catches the eye better of anyone who doesn't read all the way to the bottom of this conversation.
  
LLMDs who want referrals maybe are probably being really careful not to get tipped to the state medical board in an unfriendly state. That's another reason to use the ILADS referral service.  Try both ways:  a new 'Need LLMD near X" post here, and also email to ILADS.  

I appreciate how confusing this is when you're feeling lousy.  But hang in there -- we'll try to help.  We've all been where you are.


Avatar universal
I'm in Roanoke va
Avatar universal
It sounds as if you were seen by an Infectious Disease doctor. Someone who doesn't know about the "Lyme wars" would naturally think that's the best specialty to see.

However, the IDSA (Infectious Disease Society of America) has published a very damaging guidelines that most ID doctors follow.
If you were seen by an ID doctor it's almost certain that you were given what is called the 'two tier' test(s) which has an almost 50% chance of error rate! So being negative doesn't mean anything with that test.

The sad news is that even if tested by Igenex labs (the best) a person can still show negative. I did. Many have. But I was proven to have Lyme via a spinal tap. Doesn't get more positive than that! (I'm not suggesting you get a spinal tap------- it's a very invasive procedure!)

Once you find a good LLMD you'll be on your way to getting tested and treated (if that LLMD is a good one!)

I always feel sad when I see yet another newcomer who has been subjected to all the false and potentially harmful non-treatment of Lyme. Lyme would be a fairly easy disease to overcome IF it were treated right away! Agressively. But a major medical society has seen to it that most newcomers aren't tested or treated correctly---- which can lead to months (even years) of treatment. Sigh.
Avatar universal
You said you liked lots of information. Well, here goes: :)

Read every article Tom Grier has written. (Those won't be specific to YOU but will help you understand more about testing, the bacteria etc.

Read Cure Unknown by Pam Weintraub. Excellent, heavily researched and cited as a good investigative journalist does, and a must for everyone needing to know about the disease and the 'wars'.

That's just for starters. :)
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