Strange Lyme Symptoms?

[bluebird4500]

Hi Posted another question early yesterday listing all of my neuro-psychological symptoms.  I do not have the "classic" (whatever that is!) symptoms but brain fog, probs with memory, word recollection, fatigue, disconnectedness, anxiety/ panic attacks etc.

As I was thinking about it, here are the few PHYSICAL symptoms I could think of over the years.

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.

Anyone have something similar??

Thanks!

[Ricobord]

I tested positive for b.henselae (Bartonella) at IGeneX.  Technically, I was well into the 'equivocal' range, but considering that the number returned on the test peaks about 4 weeks after infection, and I'd had it for 6 years, 'equivocal' = positive in my case. My LLMD almost always considers an equivocal as a positive.  I definitely have the intensified neuro and gut symptoms of Lyme that often come with Bartonella.  My only specific Bartonella symptom was anxiety.

I think lots of labs run b.henselae tests.  It's just that some unknown number of people get false negatives because they have a strain that is too genetically different than the strain the lab uses in the test. Also, many labs don't report the 'equivocal' range.  At another lab, I probably would have shown negative for Bartonella.

[bluebird4500]

Thanks so much guys for your input! I really appreciate it!

youvegottobekidding- which 2 labs run the bartonella test?

Thanks again!

[Ricobord]

And I definitely have Bartonella.  I actually tested positive.  It has intensified my neuro and gut symptoms.

[youvegottobekidding]

My Lyme doc said that when patients have neurological symptoms (brain going on holiday and nerves playing odd tricks on you) which seem extreme and out of proportion to their other symptoms, they very likely have Bartonella as a co-infection. (or of course it's possible to have Bartonella and not Lyme).
What you described sounds a lot like my bartonella symptoms.
There are so far 16 known strains of bartonella, and there are only lab tests for 2 of them, so you need a good Lyme doc to go on symptoms really.
If you do have it, you need an antibiotic called bactrim (or cotrim) included in your abx protocol, along with minocycline or doxycycline.
Other symptoms that strongly suggest bartonella are itching that wanders round your body, and which often peaks in 5 day cycles; bad knee or ankle joints (making noises and feel as if they are about to give way) - again, you get this with Lyme but with bart it is very strongly concentrated in the legs, with Lyme it may be anywhere; headaches - LOYTS of headaches.

[Ricobord]

That's a good thing that your doctor is turning things around quickly.  I just had some blood tests a couple weeks ago and I found out my Vit D was only 27, down from 53 last September.  And I've been taking 2000 IU supplements.

My PA says that low Vit D is really common in people with Lyme.  I'm taking 4000 IU a day now.

CD57 is interesting... I haven't been tested for it, but Stricker has published papers about it.  He discovered that CD57 is low in only AIDS and Lyme patients. (He studied AIDS back in the 80's.)  Some LLMDs are now using CD57 to support a diagnosis, and to help with a decision to complete treatment when it's back to normal. I'll probably have it tested at the end of my treatment.

[JackieCalifornia]

"The secretary said the doctor reviewed my labwork I had done 2 weeks ago, and he said it looks like I am positive for Lyme (a few bands..not sure how many showed up on my Western Blot through Labcorp)."

-- This is good, that they would stay in touch like this.  Some docs wait till your next appointment to communicate.

"She also said my vitamin D was at 17!"

--It's winter.  Low sun exposure for everyone in this hemisphere.  So not unusual that it would be a little low currently, I wouldn't think ... but I'm not medically trained.  Low Vit D is an easy fix, your doc your will talk to you about it.  Not worth losing sleep over, I wouldn't think.

"And CD57 was low."

-- There was some posting on this issue here yesterday.  CD57 is not a direct measure of anything that I know of, but instead a measure of certain activity in your immune system which may or may not correlate well with whatever else is going on in your body.  It is one tile in the mosaic, and your doc can explain its significance or lack thereof.  Not to worry.

"They called me in for immediate blood work this Wed. ...  A bit worried about the urgency there and what that means"

-- It means your doc is on the ball and not just waiting to your next appointment to review your test results and THEN order additional tests that won't be back till who knows when.  So don't worry!  Be GLAD your doc is paying attention and getting things done.  More testing doesn't mean something is wrong, it just means your doc is gathering a bigger data set to work with.  

This is a good thing!  Let us know how it goes.  Take care, try not to worry.  :)

[bluebird4500]

I everyone. Just wanted to give a little update about what's going on.

In a nutshell, on Friday, my doctor's office called with the results.  The secretary said the doctor reviewed my labwork I had done 2 weeks ago, and he said it looks like I am positive for Lyme (a few bands..not sure how many showed up on my Western Blot through Labcorp).

She also said my vitamin D was at 17!  And CD57 was low.  Haven't heard about the rest of the bloodwork results yet but will go over with me later.

They called me in for immediate blood work this Wed. They are drawing blood in office and overnighting some bloodwork to another lab that handles Lyme. Not igenex. He said it was one that my insurance would cover so he is starting there. Not sure which lab though.  Not sure why why he is doing this so 'immediately'.  A bit worried about the urgency there and what that means.  But anyway

Just wanted to update you on everything so far!

Thank you for all your support so far :-)

[JackieCalifornia]

:)

[Ricobord]

Much better to order extra, returnable items than to leave the stove on a couple of times, like I have!

[JackieCalifornia]

and PS, that you are embarrassed by finding the duplicates says that it's not that your brain is messed up ... it's that the infection is having an effect.  Your brain itself is still fine.  Like when you have a cold and your nose runs -- nobody is embarrassed that they have a running nose, because it's just part of the illness.  Ditto with Lyme and memory.  Not to worry.  

[JackieCalifornia]

I love it!  Thank you for sharing that!!  Don't worry -- it's not you, it's the BUGZ!

[mojogal]

BTW, 2 more came today, LOL

[mojogal]

I know, it is embarrassing (to myself) when I open all these packages and they all have the exact same things in them.  OMG, thankfully, I can return all of them but one.

[JackieCalifornia]

Had to chuckle about your online shopping experience.  I'm still finding big packages of toilet paper I must have been buying when I was really sick and stashing them in the closets.  :)

[mojogal]

Unfortunately, I have had those symptoms and mine are Lyme. Like others have commented a good LLMD should be aware of all these and not laugh it off. I can't remember what I was thinking or doing from one minute to the next. For example, I do most of my shopping online. Because of the lesions on my brain and not remembering, I ordered 3 of the same thing. Couldnt remember doing it.  The symptoms do come and go.
I wish you luck and healing.

[Ricobord]

I can't remember if I've mentioned this, but be sure to get checked out for Bartonella.  People with "a preponderance of neurological symptoms" most often have Bartonella as a coinfection.  (I do.)

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

[Ricobord]

Lack of a knee jerk reaction is a symptom of a neurological problem. I'm surprised your doctor laughed it off.  Every doctor I've seen in the last few months checked all my reflexes.  Mine have always been okay, though, despite some balance problems and dizzyness.

I can relate to the issue of your brain getting overstimulated easily. I definitely had that. I couldn't tolerate much noise, and retreated from even my family when I was at my worst. I still have trouble listening to my husband if the TV is on and my daughter is also chattering away.  My brain can't process so many things at once.  (A friend of mine with Lyme passed out a couple times when something startled her, because her tolerance for external stimulation was so low.)

While I didn't have the problem of dropping things, I have heard of others who did.  I found I couldn't write clearly and was misspelling words.  My handwriting looked only slightly better than my 5 year old's writing.  For a few days, I had a hand tremor show up in my dominant hand. I already figured out I had Lyme at that point, and so when it happened, I remembered that it was on the symptoms list.  That helped keep me from freaking out.

Before I saw my LLMD, they wanted me to write down all my symptoms and when they started, as well as all my test results.  It took me at least a week to do it, because it was so hard to concentrate.  And every time I re-read the list, I realized I missed something.

Now I keep a special little book where everytime I think of something I need to tell or ask my doctor, I immediately write it down.  Then I take the book, along with my binder of records and make sure I get through everything on the list during the appointment.  Otherwise I would forget most of it!

While other things could be causing your symptoms, the fact that they come and go and then new symptoms appear is classic for Lyme.
Have you tried magnesium supplements?  Magnesium is used by the body for heart, nerve, and muscle health.  Some of the symptoms we experience are from magnesium deficiency.  I'm taking about 500mg per day, and an epsom salt bath a couple times a week.

[JackieCalifornia]

It's possible all those things are related ... or not.  You might mention them at your upcoming doc appointment, just so s/he gets a full picture of your symptoms.  A good Lyme doc gets hints and clues about what you might have from the symptom assortment.

Lyme has all sorts of manifestations, different in different people, and different in the same person over time.  Complicating the issue are any co-infections that came with Lyme.  Ticks are tiny sewers and carry all kinds of garbage.

One of the things said on this site sometimes is that once you understand Lyme from personal experience, you tend to see it in others who may not know they are infected but have certain symptoms.  (If only docs were so aware!)

It's good to have this site to vent, because those who haven't encountered Lyme simply don't understand.  They can be sympathetic, but don't really get what am experience it can be, like any major illness.  Lyme isn't generally viewed by *docs* as a major illness, so there's not the widespread understanding in either the medical profession or the public of what a big deal it really is.

So, we're sorry you have reason to be here, but welcome!  You're in good company.  And do mention your historical symptoms to your doc -- you never know when one of them will give him/her another important clue.  J.