Annoying pain, and debilitating dizzy/numb/ weird sensation throughout body

SSo here is the deal. I will describe things in the best detail I can and see if anyone could identify what it is. I am currently seeing a regular doctor and an LLMD, and they are both a bit stumped by this. First off, I have pain in the back of my neck off and on, along with pain in my shoulders and sometimes upper arms,. Also, I constantly have this wierd dizzy/slightly numb sensation that is hard to describe throughout my entire body, especially pronounced in my forearms, hands, and lower legs and feet. Sometimes, I feel sensations in my neck. I also get these occasional spells of of lots of severe jitterrinesslasting for a few minutes to a few hours, like I just chugged multiple energy drinks. Also, occassional anxiery and fast pulse. Also, I have a small, occasional motor tic on the left side of my body that seems to originate right under my rib cage. Also, I realized that I get this buzzing jitterish feeling through my leg when I jerk my head side to side. Also, sometimes moving my head makes it feel heavy, like a bowling ball. Anyways, I have been to multiple doctors, have had blood work, full cariac workup, and also saw a neurologist that claimed nothing was wrong after some routine tests. But these symptoms are debilitating and keeping me out of work, and these doctors have not solved it. Any ideas on what this might be? And if so, what I could do or things I could bring up to my primary doctor and/or neurologist or LLMD. They seem as clueless as me! I don't know if it is because I don't do a great job conveying it (it is a really hard symptom to describe) or if I have them in over their head. But help getting out would be good I'm stuck.

I read your post again....I'm assuming that you have been disgnosed with Lyme Disease? Or are you saying the LLMD doesn't think your symptoms are LD?

Have you been tested for LD...if so what were the results?


Numbness, pain, anxiety....common lyme symptoms...

Hey Wilster,

Sorry to hear you are dealing with these debilitating symptoms and diseases. I'm not a regular here on this forum, but since my usual forum is a bit slow lately, I am visiting here more often, and your post really stood out to me.

I have most of your symptoms with slight variation except the pain in the back of the neck; mine is pain in the occipital, and stiffness in the back of the neck. These symptoms went out of control about a few years ago and I have also not been able to work. This happened to me after using an antiparasitic and anti-cyst drug (flagyl).

The weird numbness sensation I get in my arms and legs, but particularly my arms when I lay down to sleep at night. I describe it as a "funny-bone" feeling, and it keeps me awake.

The nerviness (jitteriness) I had constant for many months without relief except for when my sleep meds would kick in. It is an unhuman feeling and an aweful thing to have! I don't get a fast pulse rate, though.

The muscle twitching is horrible, too! When this stuff started (after taking that med), I got almost constant random muscle twitching.

The heavy, "bowling-ball" feeling really hits home with me, because I never had that until things got out of control after taking that med. It got so bad at one point that it felt like someone had a noose around my neck and was pulling my head forward.

Like I said, I usually don't say much on this forum, but after hearing your symptoms, I felt I needed to. I don't know if my advice will be of any help, but I am finally feeling like I am improving gradually. My feeling all along has been that my worsening has been related to a Bartonella-like infection going out of control. Or/And borrelia going out of control. So, I would agree with Girlie about the Bart (or possibly Brucella) and Lyme.

Last year I saw very slow progress on low dose Rifampin with Doxy. This year I stopped the Rifampin and added Azithromycin to the Doxy, and this has really helped. Now, I just recently added Omnicef to the Doxy & Zith. and I am doing as good as I have in 3+ years. Even symptoms that I didn't mention are improving, such as leg weakness, leg coordination, and ataxia. I hope it continues. I tend to see a little improvement, and then am disappointed (as if the debilitation and symptom hell is not bad enough).

Interesting also that CBD oil is helping normalize my loose and sedimenty stools. 3 years of mushy stools finally may be turning normal!

So, I don't know if the extra symptoms I mentioned are something you deal with, but I would seriously lean toward a gram-negative infection such as lyme or bart, (or even brucellosis). I feel that way in particular (in my case) because of the drugs that have helped me. (Lyme, Brucella, or perhaps cell-wall deficient bacteria).

This post was a bit disjointed, but hopefully it helps you instead of confusing you further.

I assume you have had proper testing for lyme and coinfections since you are being treated by an LLMD???

A belated welcome Wilster!

I join the others in questioning your LLMD's confusion about your current issues - they are so very common with these infections.

And, the testing for the coinfections is less reliable than the tests for Lyme which makes a clinical diagnosis vital.

Dr. Horowitz mentions that, if nervous system issues predominate, to think Bartonella. I'm surprised you haven't heard that speculation from your LLMD.

I'm also surprised that your LLMD has you off abx to see how you do. That's not what ILADS recommends. They recommend treating for a full two months after complete resolution of symptoms.

And, to really muddy the waters, it's possible you might be dealing with an asymptomatic babesia/babesia-like infection that is impeding your healing from Lyme, etc:

dermnetnz.org/arthropods/babesiosis.html

While my LLMD never thought I had Babesia and still doesn't think I have it, he has supported my decision to trial Buhner's Babesia herbs since I just couldn't shake the PNS issues that have plagued me since being on abx. I'm finally improving.

Perhaps some of this resonates with you and will prompt you to have a meaningful conversation with your LLMD.

If your LLMD won't put you back on abx to finish getting rid of the infection, you should start on an established herbal protocol on your own to finally be able to rid yourself of these infections.

All I can think of is how odd it is that your doc isn't recognizing those symptoms as being from Lyme.

Bartonella and Lyme combined in a person will make the immune function reduce even further, so testing for Bart will be even harder as well. Do you have any of the "main" Bartonella symptoms?
www.gordonmedical.com/unravelling-complex-chronic-illness/bartonella-like-organisms-blo-consideration-signs-and-symptoms/

No, doing tests wouldn't hurt - if they worked for that!! But they don't. They can't tell you where you are in your healing, or if you've healed. No need to spend your money on something that simply can't tell you what you wish to know.

As for the trial without abx, it would all depend on what abx you are using. I scanned the posts above but didn't see that you had mentioned what you are using or what dosage - maybe I missed it?

If you will go to the "New to Lyme? Start here!" thread, you will see a listing of Lyme symptoms titled "Master Symptom List" for Lyme. In that list you will see that anxiety is also caused by Lyme. And that's not the only list of symptoms for Lyme that includes anxiety, many Lyme symptom lists do:
www.lyme-symptoms.com/1Lyme-Symptoms.html

/www.psychologytoday.com/blog/why-can-t-i-get-better/201311/are-my-anxiety-and-depression-due-lyme-disease-0

www.thehumansideoflyme.net/viewarticle.php?aid=28 (many excellent articles on this site)

danielcameronmd.com/lyme-disease-patients-struggle-depression/


When I was reinfected last summer (2014) with only Lyme, that was one of the lovely symptoms that I had to experience yet again - so to assume that only Bartonella causes it would lead you down the wrong path

Personally, I haven't seen enough people that have had correct outcomes of that test to be able to say one way or another - but we also don't see many people that have had that test done here that I'm aware of.

The thing is, without clinical trials or something of that sort, there's no way to know how accurate any test is. So what I would say is to go by your symptoms. You still have symptoms. The ILADS recommendations have always been to treat 2 months past the resolution of all symptoms, so you haven't reached that point yet.

And there are quite a few that treat more than one infection at a time. I did. I had to treat Lyme and Bart at the same time, so not being healed from Lyme won't prevent you from going after any of the other co-infections.