So dizzy and foggy headed

And Lyme Disease is not affecting my vestibular system as I've seen an ENT, had hearing tests, he ordered a MRI of my vestibular system and the big one, a ENG balance test - all came out normal. My vestibular system does not seem to be affected in anyway.

So what the heck is causing this? What is Lyme (if this is what is causing this for me) doing to wreck havoc on my balance, dizziness, lightheaded and sometimes black out for split second? Not sure anyone knows... more research needs to be done regarding lyme.

Hello again

I just saw your post about the smoking. You had some good responses. I just wanted to remind you that you have some major neurotoxins hanging out in your blood and tissues and they are going to make detoxing complicated and labored… another reason to slow your tx down a bit and slow the smoking down too so you're not shocking your body by withdrawing the chemicals but you're adding fewer toxins on a daily basis… and if you can quit slowly over time, I'd try.

p

Pirouette - I've had 1 cat scan and 3 mris over the last few years - would one of those tests likely pick up if I was having seizures? I don't feel like I'm having them.. I hope not. It just feels like a near syncope ...and I call it "brain zaps"

I echo Traveler's post about your cycles. Your hormones fluctuate during your cycle and the shedding of the uterus lining (which causes the bleeding) is also a form of detoxing. My unscientific theory is that some women experience PMS-type symptoms simply because their bodies don't adjust to these two processes well.

My bet is this is also complicating your lyme tx and you might get some helpful info by testing for detoxing and methylation mutations. Methylation is a complicated set of chemical reactions that occur in your body constantly as your body is creating and using hormones and other components necessary to process nutrition and hormones and tons of stuff. Suffice to say, when you have trouble with methylation, there are broken links in the process. And for people like us who are killing infections with sometimes intense treatments and HAVE to get the dead debris and toxins out of the body, which requires detoxing, trouble doing this can exacerbate symptoms.

And this is what Traveler mentions about the B12 injections. For many of us, we have trouble processing B12. If you have methylation issues, your body may create B12 but struggles to make use of it. So, it's recommended to use a more "dumbed down" version of B12. Also, some MDs and NDs unknowingly prescribe they cyanocobalamin, which is synthetic (cheap, has a longer shelf life) and should never be used for people like us. So, yes, please double check with your LLMD and share the article Traveler linked to.

The more you post, I think you're definitely getting stumped with detox problems. You're not doing enough but you're also probably a little challenged genetically. If I were you I would do a search for really good detox suggestions or peruse the "New to Lyme?" thread again. Or post a new thread to ask other posters for suggestions. This usually gets very good responses and people are doing very interesting things to detox.

Once you get a more well-rounded protocol in the works, then you can focus on testing yourself for genetic mutations. This is pretty straightforward. Treating them can get a little tricky but again, lots of people on the forum are doing it and can guide you to good resources.

-p

I know you are! YOU GO GIRL! I just noticed you helped in another thread that I didn't see… This should be easier LOL I'm just happy to be able to read today. ;)

p

Can I go to my family doctor to get tested for detoxing and methylation mutations that way it is covered and I don't have to pay for testing through my LLND? Or is this something only a LLMD or LLND can test for? I don't have extra money to spend on blood tests, I need all extra money for the herbs, supplements and appointment fees for my LLND. Can I avoid doing the testing and just treat myself like I do have detoxing and methylation mutation problems? What would I do in this case to fix the problem that I can ask my LLND about? I don't think I have any reason to think I have this problem yet though. I haven't started treatment yet and I'm just living with my untreated Lyme Disease symptoms... everybody gets symptoms with Lyme Disease. But yeah, I could very well have this problem. Nothing points to it for me though is what I mean, any more than the next person... or am I missing something? We're you just suggesting checking this out to be sure? Sorry if I'm questioning you, I'm always afraid people will think wrongly when I ask why they said what they said... but it is just me trying to understand :) I sooo appreciate the feedback.

genetic mutations? This is all a different language to me. Thought I was just dealing with Lyme & Co... it just keeps getting more complicated and hard to understand.
thanks for taking the time ... It's helping me learn!

I can definitely sympathize as I'm dealing with the same set of symptoms. On the really bad days I will usually not even leave my apartment because it feels like I'm very drunk and it takes all my concentration to try to walk in a straight line. Sometime it feels like walking on a mattress, like the floor is giving out under your feet. When I was still working it would sometimes flare up, like you say, and I would have to stay at home for 2-3 days as working was impossible. Just reading an email was a challenge as the focus jumped up and down and and I couldn't focus on a single line.

For me, I believe this comes from Bartonella as that is the main infection I'm fighting. My last blood test (EliSpot/LTT) was negative/borderline for Lyme so there is a chance I cleared that up with abx. I still have the Bartonella rash and foot pain, which leads me to believe Bartonella is my main problem. Lately I've been treating with Cannabis Oil and I've made some great progress and especially on the good days the dizziness/fogginess is much better to gone. When I have a Herx reaction it tends to come back and it's the main sign that I'm herxing.

I have also experienced several black-outs and it's one of the reasons I stopped driving. I suspect it might be a petite mal seizure or absence seizure, I'm speculating here but it would make sense since Bartonella is known to cause seizures. Take a look and see if it fits: /en.wikipedia.org/wiki/Absence_seizure

I had a few that were a bit worse. Once in the office I blacked out for a split second and afterwards I didn't know where I was for some seconds (I think it was around that length, hard to say, it's very disconcerting). The other time I was eating and holding a glass of water when I blacked out and dropped the water glass.

Bartonella is hard to test for, few test positive for antibodies and the PCR test has a sensitivty in the 10% range (meaning it will come up positive in 10% of the cases if you're testing people who have Bartonella). I never tested positive but the rash is a dead giveaway(it's on both hips and armpits), I think I did the PCR + Serology 3 or 4 times with negative result.
I know there is a place called galaxydx in the US that have developed a special bartonella test where you take 3 blood samples and then it's grown on a substrate for some weeks and then PCR tested, it's called Bartonella ePCR. They claim to raise the senisitivty to 80-90% in this way. If I were living in the US I would have tried that. The problem is that the test costs $864 if you do the triple blood draw so that might be prohibitive.

I'm not saying that you have Bartonella but it's possibility to consider. I've read that you should especially consider Bartonella if the Lyme treatment fails but if I understood you correctly you've only been in treatment for 2.5 months, which is not that long.
In case you want to look into it a bit more I've found this link very helpful:
www.betterhealthguy.com/ilads-2014
The first talk is about Bartonella and when to suspect Bartonella.

Traveler, Interesting it was my understanding that you could somewhat gauge the status of the infection by how high the values are. It also seemed to fit in my case. The first time I tested after 1 year of abx and the result was 10/8/2 (2012), 2nd time 5/2/1 (2013), 3rd time 2/3/2 (B2014) and 4th time 2/2/2 (E2014), which is considered borderline, anything above 2 is considered postive and it tests for 3 parts of the bacteria. The 4th test was done after I had stopped abx for 1 year (might have been a few weeks somewhere in that timeframe with abx) so I figured if the value went down without treatment that maybe the infection was gone.

However, I have not ruled out Lyme at all, you never know where it could be hiding.

Traveler- CNS symptoms would be off balance, lightheaded etc, right?

JessicaMommy said...
Traveler- CNS symptoms would be off balance, lightheaded etc, right?

Those could be CNS symptoms like sensory alterations, etc:
CENTRAL NERVOUS SYSTEM/NEUROLOGIAL/NEUROPATHIC/OTOLOGIC:
Abnormal CAT, MRI and/or SPECT scans
Alcohol intolerance
Aseptic meningitis
"Brainfog"; inability to think clearly
Difficulty moving tongue to speak
Diminished or absent reflexes
Fainting or blackouts; feeling like you might faint
Headaches (frequent, severe, recurring)
Hearing fluctuations (sounds fade then return)
Hearing changes, often from day to day (need to turn up, then down, volume of radio, TV)
Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen)
Libido (decreased)
Light-headedness, feeling spaced-out
Migraine headaches
Muscle twitching
Noise intolerance
Paralysis or severe weakness of limb
Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities
Photosensitivity
Radiculitis
Seizures; seizure-like episodes
Sensory alterations (hyper- or hyposensitivity) - smell, taste, hearing (noise intolerance)
Severe muscle weakness
Syncope (fainting)
Tinnitus (ringing/noises in one or both ears)
Touch or weight of clothing on or against body causes discomfort or pain
Tremors, trembling

Or they could be Autonomic Nervous system issues, like from low blood pressure, orthostatic intolerance, etc:

AUTONOMIC NERVOUS SYSTEM/ENDOCRINE/IMMUNE/HORMONE:
Abnormal sensitivity to hot or cold
Allergies (nasal, other; new, increased or worsening)
Canker sores (frequent)
Chills and/or shakes when hungry (may occur instead of feeling hungry)
Cold hands and feet
Extreme fatigue after minimal exertion
Feeling hot or cold often
Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever (99.5-101.5 F / 37.5-38.6 C), chills
Hair loss (alopecia)
Herpes simplex or shingles rash
Increased susceptibility to infections
Low-grade fevers
Low blood pressure (below 110/70)
Low body temperature (below 97.5)
Lymph nodes painful, swollen (in neck; under arms)
Night sweats (not related to menopause or fever)
Orthostatic Intolerance (neurally mediated hypotension)
Reactive hypoglycemia and insulin resistance
Thirst, increased
Temperature irregularities; often feeling hot or cold irrespective of actual ambient temperature and body temperature; low body temperature (below 97.6 F / 36.4 C)
Thyroid inflammation (acute thyroiditis; hypothyroidism; Hashimoto's thyroiditis)

I want to post - but I couldn't read through every post...I'm having trouble concentrating a bit right now - I think I'm tired...so if I'm duplicating what someone said, I apologize in advance.

Regarding the seizures...I was told when we suspected my Dad was having them...(mini ones) that you have to test at the time of the seizure (scan) - which was impossible - we never knew when he was having an episode...only saw results after the fact.

I also have some strange 'head' sensations...and my LLND and I both think I have bart...not effectively treated yet (and I must say I've been pretty patient...but I'm gonna 'blow' soon, if he doesn't write a script for Rifampin)

These are some of the sensations/symptoms I have related to my head:

I will all of a sudden be off-balance. I couldn't walk a straight line if my life depended on it.

When I stand up from sitting - sometimes - I have a pulse in my head - not in my ears, though...I have the pulsatile tinnitus too sometimes, but this is different.

I sometimes feel pressure in my head behind my eyes.

I get tinglies on the top and back of my head.

I have some memory issues - some short term and some 'mid-term' (not quite long term...lol)

I do think my CNS has been infected with lyme and bartonella. I believe this is the cause of my radiculopathy - the nerve pain/weakness/etc. on my upper left side - shoulder blade/arm/hand/fingers.

Wow, JessicaMommy, that's me. That's me with the same type flare up situations. One day I'm fine the next day it's terrible. One hour I'm good the next I'm on a merry-go-round and then fine again. The symptom aside from the dizziness and and cognitive issues are the randomly sporadic migraine type headaches that come and go as they please. Oh and the moment where you just momentarily go blank and lose all sense of time and space for a split second, yeah that sucks too.

I'm in the same boat as you. Hopefully we can find a land soon. Best of luck to you!