15459588 tn?1440689098

I think it's Lyme. Help?

To start, I have never been diagnosed with anything formally. I have only been diagnosed as having been positive for the Epstein-Barr Virus. That was in July of last year, when I last felt normal. I am starting to think my symptoms most closely relate to something auto-immune; perhaps even Lyme.

I am looking for information, if you'll help me. I have so many strange and radical symptoms that I just don't know where to turn next. After having been found positive for EBV, I ended up in the hospital for a few days, and have been to every ER in my city, but they only tell me that it is anxiety. I've been through now three primary care doctors in the last year, who all tell me it is "all in my head".

The most disconcerting of my symptoms are the ones I had today, actually. I feel as though my brain is "swollen"; like it's bigger than it should be and is pressing against my skull, which causes an intense, painful pressure in my forehead, as well as really scary, desperate thoughts I can't seem to control. With this also comes disorientation and confusion, irritability, restlessness, vision problems, insomnia and fatigue. I also have an intense amount of anxiety. Prior to July 2014, I had never had a panic attack my whole life (I was 23 years old); in the last year I have had more than thirty.

I also have what my previous doctors called "hot flashes", but I know they are different. It is an intense burning sensation under my skin that traverses the whole of my body. The actual “burning” affects only my forearms, fingers and hands, while the rest of my body just feels extremely hot; the difference between the two is that the burning sensation is incredibly painful (in my arms and hands), and the rest of my body just feels feverish, but I take my temperature each time and have never had a fever. Sometimes my boyfriend has to dump nearly frozen bottles of water on my just so I can cool off enough to go to sleep. It mostly affects me at night, but has been known to affect me whenever it wants.

As far as ticks are concerned, I don't consciously remember ever being bit, but I grew up in Pennsylvania. My mother told me when myself and my brothers were younger she used to pick ticks off of us all the time. I don't know if it's possible that the disease has stayed dormant for this long. I am 25 now.

I am constantly exhausted, but I can barely sleep. I have difficulty focusing on things at work. I have nightmares that leave me disoriented for the majority of the morning, three or more times per week. I have difficulty eating. I have difficulty swallowing, and I have unforgivable heartburn. I also experience numbness and tightness in my throat, to the point where I feel like it may close, or I will lose the ability to swallow completely.

I do not eat fast food and I do not do drugs. I have the occasional cigarette. I feel the best when I am drunk, but I do not drink a lot.

I have been tested for every auto-immune disease possible. I have been tested for every STD imaginable. I am now too sensitive for most drugs to take anything other than 1/4 of a 1mg Klonopin as needed for the anxiety. Sometimes it works, sometimes it doesn’t.

I feel like mere shell of the outgoing, fun-loving 23 year-old I used to be. I feel like a prisoner in my own head. I don't want to wake up sometimes.
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Avatar universal
I am very sorry for all you are going through, and I applaud you for continuing to ask questions and find answers that make sense to you.

I just searched online for

                            -- lyme disease "long beach ca" --
and for
                            -- llmd "long beach ca" --

with the quote marks just as shown above, but without the
-- dash marks -- as shown.  

There were quite a few hits from the search, and in your situation, I would read through the hits that look promising, and then search online for the docs/clinics that seem promising based on their comments/information posted online.  

There was at least one mention that said something about giving you the test results to decide what to do with it, but the tests for Lyme are not like a simple pregnancy test:  the Lyme tests are more complicated and need a knowlegeable MD to review them and advise you.

There is a split in the medical community about Lyme and whether it is serious or not (it is serious) and how to treat it (with a couple weeks of doxycycline [often NOT able to achieve a cure for specific reasons] or with other particular antibiotics that a Lyme specialist would understand [and are much more likely to cure you]).

All this sounds very complicated, I know, but the first and most important step is to *get tested* and get copies of the tests for your own review.  Then you can decide what the next step is.

It is very strange to be in a situation where the medical community is warring within itself, but that's just the way it is right now.  Lyme is not taken seriously by many MDs, and that's what you have guard against.  

I personally went through 20 MDs until one finally tested me for Lyme, having run out of other things to test.  My test result was *positive*, meaning I had Lyme, but that doc was so clueless that she told me, "Oh, you could not possibly have Lyme.  I have patients with Lyme, and they are all ... near death."  Note:  the doc had NO idea what she was talking about, but it didn't stop her from sending me away, as ill as I was, and with a documented positive test for Lyme.

That was an incredibly dense thing for the doc to say, but it was evidence that there are many clueless MDs who are otherwise quite up to date.  By chance, an old friend of mine from back East had had Lyme some years before I ill, and based on her experience, I knew Lyme was serious and HAD to be treated appropriately with antibiotics.

Be sure when you see a Lyme doc to tell him/her all that you relate above about being in Pennsylvania, etc., because there are several different strains of Lyme that are not all detected by just one Lyme test.  Sometimes docs assume that you have always lived in the place you live now, so be sure to put it on your data sheet when you see the doc and also mention it to the doc in case s/he doesn't see it on your data sheet.  (This matters partly because there are several different types of Lyme bacteria and different tests for each of them, so it's important for the doc to know where you've lived and traveled, including overseas.)

Someday this will all be straightened out, but not today.  Don't be afraid; just be pro-active.  I know this sounds totally overwhelming when you feel so lousy, so at least a week or so before your appointment, start a WRITTEN list of all your symptoms as you notice them, such as:

"Monday [July 3rd]:  mild headache, sore calf muscles, poor appetite.  Slept well for 8 hours."  

Then be sure to take a copy of the list with you for your doc to read through.  My memory was not very good when I had Lyme (which is not uncommon -- memory and thinking are often kind of foggy in Lyme), so it helped me a LOT to do these lists, and my doc like them too.  

Some docs just sit back and don't want to read your list, and they say 'Just tell me how you are feeling' -- but I felt different on different days and (due to 'Lyme brain' fogginess) I also couldn't remember much from one day to the next.  So ... being able to give accurate data to the doc was important, even if the doc didn't understand how bad my memory was.  

My Lyme doc *loved* my daily notes, though -- I would take a print out of them since the last appointment (and a copy for me to refer to during the appointment), and the doc would read through the notes just before calling me into his office, so he was up to date on my recent history.  Even if your doc doesn't want to read your notes, do them and take them with you, so YOU can refer to them in telling the doc how you've been feeling.  

Sorry to overload you, and if these little tricks help you, that's good, but you may have your own ways to jog your memory.

I've been well for 5+ years now, and it's worth the effort to do it.  Let us know how we can help, okay?  Take care!  
Helpful - 0
1763947 tn?1334055319
Yes please get to an LLMD or LLND. I know how you feel, I went 25 years misdiagnosed before starting to treat 3.5 years ago for Lyme disease and 3 co-infections. They all require different meds or herbs. It's difficult, I am always fatigued but even though I sometimes want to give up I don't. I want my life back.
Helpful - 0
Avatar universal
You go, mojo -- if anyone deserves to kick Lyme, it's YOU.  

hugs and all good wishes --  J.
Helpful - 0
1763947 tn?1334055319
Thanks Jackie!
Helpful - 0
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