Chronic

D

DarkJedi4

New member
Hi again,

The twitching and buzzing are likely stemming from the muscles but I'm really not sure. The wooziness is slightly better but I'm by no means cured yet. For 3 months, I've been taking an oral antibiotic but last week I also started intravenous antibiotic treatment. My LLMD (Lyme Literate Medical Doctor) advised this once she saw that there was some abnormality in my white matter (revealed in the SPECT test I had done).

Your symptoms sound similar to mine. I also have ringing in my ears (but I've had that for 5 years so I doubt it's due to Lyme). If you've exhausted other possibilities, I'd definitely look into Lyme. Most doctors don't really know anything about it. I was misdiagnosed by several and as a result, have now had Lyme in my body for at least 2 years. My story is very very common. I tested negative for Lyme twice. But then I started to read how so many people go misdiagnosed because their blood tests come back negative. Those regular blood tests are very unreliable for detecting Lyme. Once I had felt that I had eliminated other possibilities, I got in touch with an LLMD, who ordered more accurate tests (Igenex Lab, MRI, SPECT) and confirmed that I had Lyme. So perhaps it would be a good idea for you to get in touch with a LLMD yourself.

Best of luck, Amiel
 
Hi,
I noticed you have not posted an update since February and wanted to see how you are feeling. I have the same exact symtoms you described and I also live in NJ. My symtoms started in October of 08. I have gone to several doctors, had blood work, chest x-ray, GI work etc. All came back negative. My doctor is suggesting an infection disease specialist next and testing for celiac disease. If you found something that worked for you I would love to hear about it.
Thanks
 
I have had this woozy feeling on and off for 20 yrs. I also get BPPV vertigo alot. When the vertigo goes away I still feel woozy, tired and headaches in my temples. I have been to: neurologist, GP, Ent, and gyno. Some say it's anxiety, but I know what anxiety is and I don't have it all the time. My blood tests are all normal, my blood pressure is normal, I just don't know what to do anymore. I know that the barametric pressure affects it also. I have had 2 mri's in 2003 and 2005. I have had catscans, I have had my metal fillings changed to white, and I just constantly feel like I am drugged and my head is swimming all the time. Could it be hormones? SOMEONE HELP!!!!
 
Hi KFJordan,
I have been to soooo many doctors. I told them no more drugs!!!! I have been put on so many meds that they are worse than the condition. I am now going to figure this out on my own. Maybe between all the messages on this site we can figure it out. It is worse when there is rain coming. My neurologist says maybe it's the barometric pressure, which makes sense. My next move is to have my hormones checked. thanks so much for replying to by message. I didn't think that many people read this stuff. I am going for a physical therapy treatment for my head on Nov. 11th. I am trying EVERYTHING!! Even today I feel so woozy and I feel like there is a rubber band around my head. Will keep you posted....
J
 
The issue for me turned out to be allergies. I was having a reaction to the multivitamins I was taking. I don't take any meds although my allergist did prescribe a nasal spray. Once I stopped taking all of the vitamins I started feeling better after a few days. No more facial flushing, drunk woozy feeling etc. Good luck.
 
Amiel, what symptoms specifically did you have? I have been experiencing fairly severe brain fog, random fatigue and occasional dizziness and memory problems for several months. I was tested for Celiac, Lyme disease and a few viral infections by my doctor and they all came back negative. But now that I have heard about the unreliability of general testing for Lyme disease, I'm starting to doubt the test results.

I specifically do not have any recurring joint pains, which I know are a major symptom of Lyme, so I'm still unsure.
 
Hi milankundera,

My symptoms include: this weird head thing - constant wooziness, occasional head pressure, sporadic headaches. Then twitching/buzzing all around and also fatigue.

I hardly have any joint pain/aches (knock on wood) yet I still have Lyme. If you've exhausted other possibilities, I'd definitely look moreinto Lyme !

Best of luck, Amiel.
 
Yes, the buzzing feels like there's a vibrator there, mostly in the calves. I was told by a neurologist 2 1/2 years ago that the twitching and buzzing were due to BFS (Benign Fasciculation Syndrome) often brought on by stress and anxiety. Little did I know that these really were the first Lyme related symptoms.

I've never really been an outdoorsy type but please know that Lyme is very easy to catch even in your own backyard. I have no recollection of being bitten by a tick but at least half of people with Lyme don't. Besides ticks, mosquitoes are also known to carry the bacteria.

Lyme can cause over 100 symptoms. These are some of them:

1. Unexplained fevers, sweats, chills, or flushing
2. Unexplained weight change--loss or gain
3. Fatigue, tiredness, poor stamina
4. Unexplained hair loss
5. Swollen glands: list areas____
6. Sore throat
7. Testicular pain/pelvic pain
8. Unexplained menstrual irregularity
9. Unexplained milk production: breast pain
10.Irritable bladder or bladder dysfunction
11.Sexual dysfunction or loss of libido
12.Upset stomach
13.Change in bowel function-constipation, diarrhea
14.Chest pain or rib soreness
15.Shortness of breath, cough
16.Heart palpitations, pulse skips, heart block
17.Any history of a heart murmur or valve prolapse?
18.Joint pain or swelling: list joints_____________
19.Stiffness of the joints, neck, or back
20.Muscle pain or cramps
21.Twitching of the face or other muscles
22.Headache
23.Neck creeks and cracks, neck stiffness, neck pain
24.Tingling, numbness, burning or stabbing sensations, shooting pains
25.Facial paralysis (Bell's Palsy)
26.Eyes/Vision: double, blurry, increased floaters, light sensitivity
27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
28.lncreased motion sickness, vertigo, poor balance
29.Lightheadedness, wooziness
30.Tremor
31.Confusion, difficulty in thinking
32.Diffculty with concentration, reading
33.Forgetfuiness, poor short term memory
34.Disorientation: getting lost, going to wrong places
35.Difficulty with speech or writing
36.Mood swings, irritability, depression
37.Disturbed sleep-too much, too little, early awakening
38.Exaggerated symptoms or worse hangover from alcohol

My advice is this: If you've ruled everything out, and seen every type of doctor under the sun, I'd seriously then look into this. Find an LLMD (Lyme Literate Medical Doctor) and get tested through Igenex.

Best of luck, Ami
 
Did you ever find out what is causing your symptoms? I have the exact same symptoms but have seen a doctor as of yet. I was attributing it to seasonal allergies since it is worse in the fall than the spring. When fall rolls around here in Atlanta, I am miserable wtih these symptoms.
 
Hello Amiel.
I appreciate your posts. Can you elaborate on the twitching and buzzing? Is this in your muscles? have you been cured of the wooziness now that they have determined it was Lymes and have you on a treatment plan? I have had this constant wooziness for about 4 months. I have seen several doctors, had several test, but not tested for Lymes. I went to a GP and asked to be tested for Lymes and he told me that I had anxiety and that I needed to read up on that and not Lymes disease. I am starting to dislike the medical community. In addition to the wooziness, head pressure and sporadic headaches like you mention, I also have ringing in my ears. May I ask was it you that suggested they test for Lymes and if not what type of doctor finally diagonised you?
Thanks again for sharing your story.
 
I just happened on to your posting---I hope you're still checking it.
You describe exactly what I've been dealing with since 2008 also.
However, mine started with sudden hearing loss in one ear--which came back but has gotten worse in the past 2 years. I had an MRI, ECOG test on the ears, blood work done, etc.
I'm under the care of a Neuro-ent doctor and he now has referred me to another very good one in the area and I will see him in 2 weeks.
The one I go to now said I have 'cochlear hydrops' and it's in the family of Meniere's disease. I don't have vertigo or dizziness--just what you described, the feeling of being drugged or drunk--and I don't drink at all!
My hearing comes and goes in one ear and I have tinnitus 24/7 and at times it's very very bad!
I've tried Valium, Trental--to stimulate circulation to the inner ear--as this is caused by fluid problems in the inner ear--oral steriods 3 times for hearing loss, and lots of hearing tests. I now wear a hearing aid and it does help.
The head pressure is the worst thing--it's tolerable parts of the day and at other times, it's so bad, I feel like only sitting in the recliner with it back or just going to bed. After 30 mins. in the recliner I do improve enough usually to get up and about. Sometimes going to bed----at night, gives relief for awhile the next day, but it's back very quickly. I've kept on doing all things I have to do, but to say life is enjoyable these days--is 'no'!
I hope to get more answers and help from this new doctor--also a Neuro/Otologist.
 
Yes, I have a chronic case of Lyme Disease and Ehrlichiosis. I'm currently being treated but have nothing to show for it yet. Please keep in mind that regular Lyme tests are very very unreliable.

All the best, Amiel
 
Hey, I just wanted you to know that I AM GOING THRU THE SAME THING AS YOU. I've been sick for the last 7 months or so and the whole time I've had this woozy/drunk-like/brainfogginess... I dont drink, smoke , or do drugs... I've been to 7 different specialists , nuerologist, infectious disease doctors, have had every test under the sun... every thing is coming back normal. I DO have a great doctor. he is Lyme savy and is an award winning doctor for lyme articles he has written. he tested me for Lyme AGAIN at the igenix lab and they found me POSITIVE for the bacteria. 64% of Lyme's patients NEVER get a rash and even more test FALSE NEGATIVE for the standard lyme test. this is because a "typical" Lyme test that a regular lab gives DOES NOT TEST FOR THE MOST IMPORTANT BANDS WHICH NEED TO BE TESTED FOR. Its rediculous. all I can tell you is to be strong. which is exactly what i am trying to do. you need to get the right help and dont take no for an answer. sometimes I thank God that i expierience the "BRAINFOGGINESS" as a symptom, because it reminds me that I DEFINETLY AM SICK FOR REAL, even when the doctors try to make me feel crazy. nobody knows your body better than you do. dont stop searching for what is wrong with you. GET A GOOD DOCTOR WHO CARES AND WILL LISTEN!
 
Hi Amiel,

By "buzzing" do you mean lilke a feeling that something is buzzing against your body or something else? I notice that I don't twitch all that much, but I get little itches and weird feelings all the time. I always thought these were due to anxiety, but I have the creepy crawlies even when I see to be very relaxed. Perhaps it's just allergies of some sorts, but I was just curious to find out more about this symptom.

I notice that I feel drunk-like a lot too. I've been this way for many years, but it became worse about several years ago. I'm tired almost all the time, unless I have a lot of caffeine. I have had basic tests done, but I am hesitant on getting a lot of tests done since I feel that it will be very difficult to find out exactly what it is. I seem a little worse since moving to my area, so I have a feeling it IS allergy related, but not seasonal. It's more of a constant thing. I used to get throat problems all the time when I lived in a different state, then I was fine after moving, so maybe this is something similar, yet the head feeling instead of throat.

I DO get vertigo though quite often and feel like everything is spinning at times. I take Prozac and the occasional Xanax, but I felt this way before taking them. The only other thing I take is birth control, but again, I didn't feel like this the whole time while taking it. I feel worst in the morning and struggle with waking up, even after a decent night's rest. The only time I can wake up fine is anytime I have a stomach-ache or if I wake up after the sun is out and very bright.

I've had times when it was pretty bad, but it seems manageable for now. I just don't want it to get worse again. I haven't really changed anything, so I'm not sure what it can be. I work out regularly and eat a healthy diet.

I did live in an area where Lyme disease was a bit more common since there were a lot of deer with ticks, but I stayed out of the wooded areas where the ticks were common, and I've never had a tick on myself. I suppose there are other ways I can catch it... I lived in that state for one year, two different times.

What would you say are the most common identifiers of Lyme that make it stand out from other things that would cause one to feel drunk? I can look up the common symptoms, but I wonder if there is anything in particular that would really stand out for me to watch for.

Thanks!
 
ALL of these are also common in Celiac aswell, and both lyme and celiac can be tested with blood and both can come out negative even if you have it. thing is you might have a vitamin test and not really be vitamin deficient but actually nutrient deficiency, which causes ALL the above symptoms and MORE aswell.. Celiac can cause over 300 symptoms.. basically its your body breaking down a rapid rate. Which can lead to cancer in the end, as you body cannot fight cancer even with the best medication if your body cannot process life sustaining nutrients. Ciliac cases' have gone up 300% in the last 5 years :dizzy: as more dr. give the proper tests, not just blood. you can get the right diagnosis'

Good Luck; and God help us all, :dizzy:
 
Some doctors think that 1/2 of chronic diseases, like the ones you've mentioned previously, are actually lyme but misdiagnosed. And some think that the Lyme tests that most doctors use should be banned because it is so very unreliable. If you check the Lyme Boards, I think you find that many posters, have gone through the health care system but have only found their answers after seeing a Lyme Literate Medical Doctor, and having tests run at Igenex.

I'm not sure I understand the "electrosensitivity" comment you made...but I will say that one symptom of lyme that some lymies experience are static charges and/or feelings of electricity running through their bodies. I've seen explanations as to why this happens but don't feel comfortable reiterating them as I am not a science geek.

Bethsheba

PS Low blood pressure and POTS are symptoms of lyme.
 
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