Anyone else NOT get sore joints, tingling, shaking etc (non-classical)? Trying to find ppl like me!!

For like 10 years I have felt like something was off in my brain. It has been like this for so long I honestly don't remember what it's like to NOT be like this. But anyway, here are my symptoms. I have largely only psychological symptoms. My question, can you have Lyme and not have ANY of the "classical" physical symptoms like joint pain, tingling, numbness etc? Any help is greatly appreciated.

Here is my symptoms + story
1) I was outside in the fields (on the East Coast) as a kid all the time. All the way up through high school and early college. There were deer out where I played all the time. My dad got Lyme tick from the same backyard.

2) Never had an "official" bullseye mark but had a very strange mark where it had a hard white center about the size of a quarter but outside of it was red/black and blue that spread outwards from it quite a ways. It was a ring of bruise around the white center. At the time my doctor told me he had never seen anything like it but assumed it was a spider bite or a broken blood vessel? This happened maybe while I was in college (I am 29 now)

3) From my first or 2nd year in college I started getting fatigued all the time. No matter how much sleep I got I never felt rested. I was still functional though- I could and can still get out of bed but some days I feel like someone has drained all my energy and the brain fog gets worse during that time. I don't ever wake up feeling rested. Literally ever.

4) Then in college I started getting brain fog/ and forgetfulness and would feel like I couldn't process things as fast as before. Neither fatigue nor brain fog/ forgetfulness impaired my grades in college/ I.Q but I was very aware in the difference in how my brain felt. It feels like the area between my consciousness and memory retrieval is shrouded in a thick fog. I can get the information but it feels odd and distant somehow. Like I am reaching through a dense fog that to retrieve information and the information is on the other side of this barrier.

5) At this time I also felt extremely disconnected from the world, as if it were 2 dimensional. It's like I am not a part of my surroundings. I started not 'seeing' my surroundings. For example, my car would have stuff all over the floor etc and I wouldn't notice it until someone told me. The only way to to describe it would be to say there was a disconnect. This was starkly different from when I was younger.

6) temporary confusion. This doesn't happen every day, maybe here and there a couple times a month. I will forget how to spell a VERY simple word, I forget how to get somewhere, I will forget how to do basic math, forget my ATM card pin number etc.

7) Spontaneous word retrieval is BAD. I am always drawing a blank on words in conversation. This happens every day, multiple times a day.

All these symptoms are now still present, from 2001 or so, until now with no known cause. But then 5 years ago I started getting psychological symptoms as well. Some have gone others have stayed on. They came on suddenly and did not feel like me. They are as follows;

a) I started having panic attacks for no reason with social interaction. I used to do acting when younger and was NEVER shy.

b) OCD like symptoms of obsessive thoughts (not bad, just obsessive) and behaviors (checking thins repeatedly).

c) Then 2 years after these symptoms began, a stressful event brought on these a "fight or flight" reaction that I was tested for extensively with blood tests because my stress hormone levels were a bit raised in my blood and they didn't see a cause. I would feel like my head was white washed, a bit short of breath/ tight chested, and felt shaky. My head felt enormous pressure in it, like it was going to explode. It felt like it would never turn off and would only stop for a day or so at a time. These panic attacks would last DAYS, maybe even a week long and would be brought on my normal every day stress. It felt like the kind of reaction your body may have to a bomb going off or something. Only, mine was just a family stress-nothing that would warrant that big of a reaction though in a normal person I'm sure. This took a full year to stop and then I'd get a relapse here and there for a day or so and then slowly it was gone.

8) Also in the last few years my ability to process alcohol has vanished. One drink and I get fatigued from it and feel intensely mentally foggy (I used to be able to drink a lot and not have this).

9) I have irregular hair growth on my chin and irregular menses (vary between on time and extremely late)

**Other things:
My symptoms improve a bit with vitamin C, but not the brain fog.
When I had blood work when I was young it said I had had parvo virus.

I have not been tested for Lyme as of yet, but I just found a LLD, who said I sound like that I DO have Lyme and has had patients like this.

But my question is: Has anyone else ONLY had symptoms like this?? I can find NO evidence of this on the web.



Also, few and far between PHYSICAL symptoms:


1) Randomly, maybe 5 times in one year my hand would let go of something I was holding while I was engaged in another activity. It literally just let go of it- like my brain couldn't juggle these two acts. It struck me as odd at the time and hasn't happened since.

2) For a few yrs if I tried to clap my hands to a beat, it literally made my hands, arms and brain feel like they were screaming. NOT painful, but this weird nervous static energy, and I would have to stop. IThe act of keeping a steady beat, while clapping or hitting something, made me feel like my nervous system was going haywire.

3) 8-10 yrs ago there was 1 or 2 checkups I had with my family doctor where I had no patellar reflex (no knee jerk reflex) when hit w/ the little hammer. He laughed saying, "what, are you dead?!" but he never was worried about it. Looking back I have no idea if somehow I overdid the reaction or whether there was something wrong, but that doctor hit away and nothing literally happened!

All these symptoms came and have went.



Thank you for reading and any advice is greatly appreciated!!

YES! I do that all the time! I always say the wrong word..

If I may ask, which symptoms of mine did you have?

Thanks for your response!

@ Yazzer- wow, really?! That gives me so much hope. I hope we get some more people on here with similar stories.

35 years? How has treatment been going? Also, which tests finally confirmed it for you? I worry since I'm like 10 years in, I'll never get a positive test...or won't get better...

Back in the mid 1990's I was a dog groomer and dealt with many ticks. I also walked my dog in the woods every weekend, went camping, plus I was living in MA, where Lyme is pretty bad.

I never had a bullseye rash and all of my early symptoms were neurological.
I remember driving down a road and not knowing where I was or where I was going. I told myself to just keep going straight because eventually something should make sense and I would remember. That actually worked. The brain fog rolled in and it was horrible. I had memory issues and felt like I was living outside of myself. There were times I could barely function or focus and made stupid mistakes. People just thought I was a ditz. I figured that was better then crazy. The disorientation could get really bad and scared me.

Luckily I read some books on candida and decided that I must have that and gave up all sugar. I got way better. I did some extreme cleanses and felt amazing, but then I would figure I could go back to normal eating and I'd get sick again.

Eventually the neck got stiff, skin started tingling, pains settled in and I went to doctors, but they always looked at the symptom not the whole picture. After a while I stopped telling people how I felt.

about 5 years ago it got really bad again and I could barely stay awake at work. I found my osteopath who did bloodwork. She said my C-Reactive protein was too high, but didn't know why. Also my D levels and iron stores were too low. We focused on getting the D and the iron up, I would feel better and then relapse.

about 3 years ago I found my nutritionist, who took me off of gluten.

I would again, get better and relapse. But I was playing diet games. Eating too many Gluten Free carbs, eating sugar as long as it was gluten free. I was mostly off of dairy by then too.

It was only this last Halloween when I was chatting with a friend that had always had similar symptoms that she told me that she had Lyme. I went to her LLMD, and tested positive with Igenix (CDC negative). My LLMD told me it's a symptomatic diagnosis and she would treat me even if the bloodwork was negative.

Well I couldn't tolerate the antibiotics, so I decided to go natural. It's working for me so far. I'm still trying to figure out my treatment and am working with my osteopath and my nutritionist to figure it all out. I bought an infrared sauna and am going to use that too (its in boxes in the basement)

You can have this thing a very long time and not know what it is. It can make you feel nuts and helpless. I always wondered why I was no longer like the rest of the world. I remember trying to run and seeing people way less fit then me blowing past me and getting frustrated. No one on my running team had the pains I had and I had the best diet of all of them. It never seemed fair.

Now I know, now I have the knowledge to heal and give my body what it needs. It's a whole mind body thing for me and I'm going to attack this thing on all fronts. First I want to get my liver working better so that I am able to detox. Once I feel my liver is working better and my immune system is stronger, I am going to then attack the Lyme more aggressively with a natural treatment. That's my plan, I think it will work for me. Over the years that I was sick, I had periods of phenomenal health. Knowing now what I know, I think I can get back to it and this time keep it. For me this whole Lyme and health thing is a process, it's part of my life path. I try to help people where ever I can to understand their bodies. We are the only ones that know our bodies and that quiet little inner voice needs to be heard and listened to.

You'll get through this. Educate yourself, decide on a treatment that will work for you. Try not to give up hope. Talk to us here as needed.

I'm glad you found us

Hi,

I, too, wish to echo others who have tested pisitive for Lyme and yet don't have "classic" symptoms.  I actually am highly symptomatic, *but* the neurocognitive has been the worst, and had joint pain for a total of 2 weeks, that's it.

The European strain of Lyme symptom includes much more neurological symptoms than typical in US....so one ought to consider any overseas trips when trying to undedrstand what is going on.  There also seem to be more skin problems/rashes.  My first symptom was developing what looked visually like classic foot fungus (thick skin and nails), but all tests were negative.  Now--12 years later and after 2 years on the Cowden program--only one nail remains thickened.

I hope you the best....the Jernigan Mustard Foot Baths helped clear my brain at times, if even just for a few hours of normalcy.

Z.

WWJD20, Sorry for the late response. It helps to know of others who have similar experiences. The support really does help. I agree with you. Doctors, in general, want to be able to give a diagnosis and neurologists are no exception. The symptoms need to fit in their little box of diagnoses because it's easier than spending time searching for other physical issues or they just don't know the answers. My experience is that they tend not to admit the latter. Patients look to them for answers so they give them what they know or think they know. This is just my opinion, but I know there are many good, kind-hearted doctors out there. Lyme is just something so evasive and the medical industry needs to make a complete turn-a-round when it comes to diagnosing and treating it. I have not read Cure Unknown, but I will check it out. Thanks for replying to my letter.