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Do the symptoms get worse with time

I'm struggling with many symptoms all which are getting worse as time goes on. I am also having new symptoms that I don't quite now what to make of. Since I am not a doctor, I will lay off on googling the "what ifs" but I can't help but question if I'm being "too sensitive" to the situation or I'm really dealing with something!

So long story short, I went hiking last year in north jersey. Lots of trees,bushes, etc. about a couple days later I had a huge bump on my leg and a red bulls eye rash around the bump. The bump really itched but there was no sign of infection or anything, just an irritated spot on my knee.

I had a blood drive at my school the day after the bump showed up on my leg. When the Red Cross was getting me ready, they were asking questions then I told them I had a weird thing on my knee and I didn't know what it was. The lady looked at it and told me I should call my doc asap because it didn't look good. I told her I'd just been hiking and she said it's probably a tick bite and to get tested for Lyme. When I went to the doc the next day she said its probably not a tick bite. She said I probably was bitten by a mosquito ( mind you, it was still late April/ early May, still chilly) or it was a spider bite. She told me I probably scratched it too hard and it was irritated. My mom asked her to test for Lyme but she told us there were no accurate tests that would even show me so it was pointless. So I was never tested.

She gave me 1 week antibiotics and some itch cream. In that 1 week I got really sick. The only thing that went away was the bump on my knee.

I decided since my knee didn't look crazy anymore to just ignore what had happened and move on. We had been dealing with a lot at the time so it was easier to just move on.

After the bite I started having really odd symptoms I never had before. I couldn't explain it, because every time I did the response was "Idk that's strange". I never was able to relate with anyone about what I was feeling. Only somethings, so I got used to what I was going through because I assumed I just was dealing with things that other people probably deal with too.

Since I have anxiety I am told to "not worry too much" so i took a step back and said " well I'm not comfortable but I'm not dying, and that's okay.

As time went on the pains only got worse and happened more often. Some days were normal and others I felt terrible.

My symptoms about 2 months after the incident were:

"Pains in my bone" I always tried to describe it as sharp pains literally in my bone that would randomly happen.

Highly sensitive skin. I never had a problem being tickled or rubbed on my back or arms. I never had a problem with hitting my arm on things beside the normal ouch. My skin feels like it's constantly being pricked with something. It's painful. I started saying "Please don't touch me it hurts" when people would come up and run my arm. I also can't stand to be tickled as its really painful now. Also, when I accidentally bump myself on anything it hurts for minutes afterwards.

As months passed the symptoms got worse.  I am now dealing with the above but much worse.

Symptoms I have now are :

Muscle weakness
Muscle spasms ( randomly happens, twitch uncontrollably and move on weird positions/ boyfriend records it because we don't know what it is exactly but I can never talk or move while it's happening and I feel extremely weak and tired afterwards. My muscle feel sore and i have headaches after as well.)
Headaches everyday
Brain fog
Memory issues
Shaking ( told it was due to anxiety but if I try to hold my hands up or "still" they shake uncontrollably )
Muscle tightness/pain
Highly sensitive to touch
Light sensitivity/sound sensitivity
Exhaustion from moving too quickly or too much

The symptoms come and go and are worse at times.

I've been to the hospital about 3 times for high blood pressure but no one new the reason for my HBP. Before my HBP id have an episode of not being able to speak "connecting words to mouth" although I could text or write ( not correctly I usually write it as I hear it then I realize I spelled something wrong moments after)

I've been having trouble walking as my leg gives out randomly.

I've also been having issues with these random episodes of not being able to connect words to my mouth ( as I said above) and it usually happens for about 15 minutes or it can last for hours ( idk why it happens and I get really frustrated because I can't speak and I'm very weak while it's happening )

I've only been tested for Lyme disease once, in the hospital after I had my first episode of not being able to speak. The morning it happened I felt confused, my head hurt and my body was tensed. When I went to the hospital they'd claimed it to be allergic reaction to antibiotics I was taking because I was really sick. They gave me a Lyme test ( with antibiotics still in my system) and it came back negative. My doctor now is going off that test saying I don't have it ( and to my understand I read that antibiotics can affect the test) but since I've been tested once my doctor won't test me again. Instead she tested me for inflammatory? She said that was also fine so she doesn't know what is wrong with me. The last hospital visit I went to I was referred to a neurologist who I am seeing in 2 days. I am not sure what to expect but I will ask for another test.

Does anyone have any advice or suggestions? I am so lost in this situation as I do not have much help from my primary. My eye doctor says I probably do have it ( I know he can't technically say I do or don't but what I've told him he thinks so) and he's my biggest support as far as a medical professional goes.

Anything will help, thank you all in advance and I will keep my profile up to date as I try to figure out what the heck is happening in my body!

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Avatar universal
Welcome to MedHelp Lyme --

You 'give good history' -- detailed but focussed, and that is very helpful when you get to a doc.  I think you've done all the rational and reasonable things, but the docs seem to not be paying attention, and that -- in a nutshell -- is what is going wrong with the medical profession and its usual ways of reacting to possible Lyme disease.  

I went through 20 MDs when I was ill, with no diagnosis until Dr #20, who was the first to run a basic Lyme test on me.  The test came back positive for Lyme! -- but the doc didn't believe it, saying (and this is a direct quote):  "I would say you have Lyme disease, but you don't look sick enough to me."

Nice, huh.  Well, I have an old friend who had had Lyme long ago, and I knew to get myself to an MD who really understood Lyme.  I found a great doc not far from where I live, and he confirmed by tests and clinical signs that I had Lyme and also another infection (babesiosis) which is often carried by the 'Lyme' ticks as well.

You say:  ..."I was referred to a neurologist who I am seeing in 2 days. I am not sure what to expect but I will ask for another test."  See what happens, and you might get lucky and find a neuro who understands Lyme ... but don't be surprised if he doesn't.  (Post back here if you would and we can give you comments on your appointment, if you like.  No one here is medically trained that I am aware of, but we are happy to give our thoughts.)

You ask, "Does anyone have any advice or suggestions?"  Yep.  Keep reading below.

You say:  "I am so lost in this situation as I do not have much help from my primary."  That is rather common, so you are not alone.  Docs who are not Lyme specialists often don't understand Lyme, partly because it is a fairly new disease spreading quickly through many areas, and at the same time, the medical schools and publications are slow on the uptake when it comes to Lyme.  It's not your fault, and your doc is just doing what he's been told is right.

You say:  "My eye doctor says I probably do have it [meaning Lyme] ( I know he can't technically say I do or don't but what I've told him he thinks so) and he's my biggest support as far as a medical professional goes."  Interestingly, eye doctors (meaning an MD who specializes in eyes, such as an ophthalmologist) are among the few specialty areas of medicine in which the docs DO take Lyme seriously and DO understand it, compared to most all other MDs when faced with a patient with Lyme. The same may be true of optometrists etc., but they are not MDs as ophthalmologists are.  If your eye doc knows a friendly ophthalmologist who could recommend a doc to work with you on your possible Lyme situation, that might be a good start.

     Here's what happened to me:  The 20th doc I saw told me, "I'd say you have Lyme, but you don't look sick enough to me."  I had an old friend back East who had had Lyme some years before, and I knew from her experience that getting to a Lyme specialist is key.  You'd think that there would be one particular sub-specialty that deals with Lyme infections, but because Lyme is new, there is no established area of medicine that includes all aspects of Lyme diagnosis and treatment.  Instead, we patients end up blundering in all manner of docs -- general practitioners, ophthalmologists, internists, and others -- who didn't train to be Lyme docs, but have open minds and the ability to think out of the box.  

Dr #20's comment that I 'didn't look sick enough' to have Lyme sent me to an MD who has, over time, become a specialist in Lyme and related illnesses.  Lyme is so new to the medical community that there is no affinity group for Lyme docs like there is for orthopedists, for surgeons, for gynecologists, for brain surgeons, and so on.  Instead, you'll find that any Lyme doc you see already has been schooled in a particular area of medicine ... so I wouldn't ask an MD if s/he is a 'Lyme doctor', because the answer may well be no.  You can still say that you think you might have Lyme disease, based on things you have read, and then let the doc do an exam.  If the doc says know but you know you are ill, then try another doc.  I went through a pile of them, because I knew I was ill ... I just didn't know what it was, and it wasn't going away by itself.

(My best description of pre-diagnosis condition was 'like having the flu and a hangover at the same time,  24/7.')

My Lyme doc was (and still is) an MD who is accredited as an *internal medicine* doctor, but I suspect that much of his day-to-day work is actually in Lyme disease and things related to Lyme.  He is experienced and knowledgeable and a pioneer in the field, and patients know that he knows what he's doing.

While it seems that neurologists and infectious disease MDs ought to be leading the charge against Lyme disease and other tickborne ailments, it doesn't work that way for now.  

So ... what to do?  There is a voluntary group for MDs called ILADS, which his short for International Lyme and Associated Diseases Society.  I don't know that there is a test for a doc to join ILADS, so there may be some oddballs who are ILADS member docs ... If I didn't already know who my Lyme doc of choice is, I would go to the ILADS website and ask for names of ILADS-member MDs within ___ miles of [whatever city you are near] and see what you get back.  Might be only a few names, and if none of them suits, then write back to the referral page again and ask for a few more.

Another way to locate an ILADS doc is to post a new thread here with a title like "Need LLMD near [Lexington, Kentucky]" and see what others post back to you.  

     ===>>>   As always, we AVOID naming the doc's names in public here, because there are a number of states that will crack down on MDs who specialize in Lyme, simply because the senior docs and those who practice in infectious disease medicine feel that they have the whole topic covered already, and Lyme specialist are Not Needed Or Wanted.  Some medical boards will try to get rid of Lyme docs by complaining to authorities that our Lyme docs are not practicing correctly.  

Dealing with all this is messy, but getting rid of Lyme is worth all the hassle.  If your tired brain can't handle all this stuff, ask a friend to work through it with you.  It's truly worth being well again!  

Sorry for the long post -- best wishes to you -- let us know how it goes, okay?
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Avatar universal
Jackie covered the details - may I simply support the suggestion that you find an LLMD to review your symptoms and get you tested with at least a western blot which an LLMD can interpret.
Best of luck to you -
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