posted
So my only symptoms I really have right now are extreme fatigue sleeping about 14 hours a day, not joint pain but random shooting pains that occur usually in my knees, and my most problematic symptom- this constant spacey, disconnected, tipsy feeling.
I've had this feeling since everything started in August. It NEVER lets up, I cannot attend school and sometimes have trouble driving.
I haven't seen any improvement at all after a round of doxycycline and a few weeks of Rocephin and oral Zith.
I've been reading a lot that this seems to be a common symptom of Babesia. I've tested negative for coinfections through MDL labs.
This spacey feeling was one of the first to occur, and since I haven't responded to Lyme treatment- I'm really starting to think its a coinfection causing this problem.
I've had MRI's with and without contrast on my brain and cervical spine, had an EEG, visited ENT, Allergist, and Neurologist with no results. Can anyone relate to this feeling?
Posts: 306 | From NY | Registered: Sep 2010
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We have chatted before and, as you know, these are my most problematic symptoms as well! Totally sucks!
Hang in there!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: Can anyone relate to this feeling?
EVERYONE with lyme/tick-borne disease can relate to this. EVERYONE. Sorry. It gets better. Be sure your support methods are all in place. That helps.
Yes, you could have a coinfection that did not show on tests so be sure to ask your LLMD to reconsider with a clinical assessment - maybe list your symptoms for him, etc.
Still, even if "just" lyme - it can take a long time to reach a remission. Sorry, but lyme treatment usually takes much longer than 2 months.
What helps along the way? Good liver support - and Adrenal Support. Details regarding the importance of that are in ear thread below.
Looking back over your post, I see you are taking Azithromycin. "Zith" can cause problems with the inner ear/balance system.
Be sure to tell your LLMD, especially if you develop ringing in the ears or sensitivity to sounds - or other ear symptoms.
Fatigue is a logical reaction. Your body just can't keep up and needs rest. Follow that and rest as best you can but also gentle non-aerobic exercise can help you body move through toxins.
The toxicity of infection, the stress of Rx on the liver, can all combine to clobber our balance system in any or all of the ways on the Vestibular Symptom list (which, IMO, are all also symptoms of lyme and other tick-borne and stealth infections).
It helps to see the range of things that the ears control: ----------------
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
[ 11-06-2010, 11:59 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about: ----------
posted
Congrats Keebler on your 18000 post! I don't know if your happy about it but it's really quite phenomenal in my opinion.
And yes NY it is a symptom of Babs. I have this and it's the worst symptom for me also 4 + years.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- BigStan,
Oh, my, I forgot to pay attention. I was going to celebrate with something a bit more festive than PBS or the internet.
Thanks for noticing but, since I post just about the same links over and over - it's not like I'm working from scratch each time. While I still have a long way to go, I'm glad to share what has helped me manage but sure wish none of us had to be on such a journey.
Hey, I like your location: The Land of Oz. Lots of pretty colors and singing. Reminds me of some Saturday nights long ago !
"We're out of the woods, we're out of the dark, we're out of the night." Now, I'll be singing that all night - gotta love that tune. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you for all of the advice everybody. The reason I do not think it was Lyme causing these remaining symptoms is I have only been sick a short period of time.
I started with doxy only about a week or two after I started to feel sick. And then treated very early and aggresively with IV Rocephin with no results.
I'm only 20 yrs old and feel like the Lyme, since caught so early, would not be as problematic as it is right now after this early aggresive treatment.
Posts: 306 | From NY | Registered: Sep 2010
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Yes. I can relate.
This is by far my worst symptom. I don't agree that everyone has this symptom. I know Lyme patients that do not have this but do have lots of pain type symptoms. I can usually tell when I meet a Lyme patient if they are dealing with the brain stuff.
I do think that Mepron and Babs type drugs helped this symptom most so far. The Babs meds were strong and I had to stop but I will go on them again after Rifampin.
I am hearing wonderful things about neurofeedback. I know several people that are doing this.
posted
Flagyl added to my mix of abx is the only thing that cleared the fog for me. I agree it's the worst symptom. good luck
Posts: 433 | From new york | Registered: Dec 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Remember to consider Heavy Metals, too. Most lyme patients deal with high mercury, etc., and that must be assessed and managed.
Parasites are also common with lyme and can cause brain fog, pain, etc.
Far beyond just how to suspect lyme, the first article below could also be used as sort of "owner's manual" - a "A Glimpse at the Land of Lyme" - at least in explaining a lot of what happens to a lyme patient. We're not in Kansas anymore. Lyme changes everything. ------------
And remember that there are many things to help manage symptoms along the way but attention to infection(s) and heavy metals are the foundation. The adjunct care like liver support, etc. is vital but it can't work unless the causes are adequately addressed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I had the same problem. I'm almost certain it was babesia. Mepron/Biaxin and then Mepron/Mino/Diflucan have helped significantly.
-------------------- long road since 2010 abx got me over the hump diet, detox, and herbs have got me to heal Posts: 174 | From CT | Registered: Jan 2010
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