I have been suffering with some very disturbing symptoms for quite sometime now. Here is my list: ANY THOUGHTS??
Daily Chronic headaches- Tension Type, pressure in all around head, behind eyes, tightness in neck, shoulders and base of head along with upper back.
Dizziness- Lightheaded, Floaty head falling sensation, (no spinning) just a swimming whirl sensation inside my head, with an occasional dropping sensation, (just as you would feel in an elevator) and a lightheaded floaty feeling.
Eyes- Pressure feeling behind them, tired feeling like I haven't slept in days, and a need to squint to keep focus or I feel like my eyes are all over the place. When my headaches are bad I can get a throbbing feeling behind them.
Postnasal Drip & Stuffy Nose- My nose is always stuffy and I feel like I constantly have mucus in the back of my throat, this feeling is made worse when speaking or during long conversations. (I know Yuck!)
Jaw clicking- I have some sort of TMJ going on, whenever I open my mouth to chew, yawn etc. I have a clicking noise in my lower mandible jaw. I do clench a lot.
Ears- Crackling static sounds, these sounds are made worse with loud noises.
some fullness at times but I open them by yawning, occasional deep sharp pains inside my ears.
Fatigue- I am always tired!!
Anxiety and Panic - Lots of it!! Mostly brought on by the dizzy/vertigo feelings.
Head- Heavy sensations, falling sensations, lightheaded sensations, brain fog. (This is by FAR the worst symptom) I hate feeling so off!
ANY THOUGHTS would be greatly Appreciated! Thanks in Advance!!
Thank You for your reply! As far as I know I am not a diabetic, although the last time I was check for this was 2 years ago during pregnancy. And back then these symptoms were present as well. As for blood pressure it's seems everytime I am at the Dr.'s they say it's good.
Hi boxerlover. You may want to consider Lyme disease as a possibility.
Lyme disease is a mutli-system bacterial infection caused from the bite of an infected tick. It can cause many seemingly unrelated symptoms, and it can be difficult to get diagnosed. I believe that NY has the highest number of cases in the country.
Below is a Lyme symptom list. You can have any combination of symptoms.
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
If you think this may be a possibility and if you would like a doctor recommendation, let me know.
The tests are known to provide false positive and negative results, so if you think that you have Lyme, you should see a Lyme Literate Medical Doctor (LLMD). They can diagnose and treat Lyme Disease without a positive test result.
INTERESTING THAT YOU BOTH MENTION LYME!!
Just a little back ground back in 1999 I became very sick. I went to the Doctor's with flu like symptoms, vertigo and a massive headache. I was told it was just a viral infection with perhaps an inner ear infection and was given antibiotics and told to go home and get rest.. I spent three weeks in bed feeling worse with each day, I returned to my doctor's and had some blood test done and tested positive for Lyme Disease. I never had a rash but recall being in an area where I could have be bitten by a tick..
I was given Doxy and told to return in one month.. Which I did and to make a long story short was treated for 1 1/2 years on and off with oral antibiotics.. In that year I was basically bed ridden weak and had real bad vertigo balance issues among other problems~symptoms.. As time and years went on some of the symptoms lessened some but the vertigo always stayed.. I asked my doctor if there was a relation between the vertigo and the Lyme and she looked at me as if I was crazy and said no.. I don't know whether or not to believe this.. I have seen so many Doctor's over the years and still never a true answer. My balance testing and testing was limited knowing this now after reading some test that others go through for balance disorders and Lyme Disease.
I still TODAY suffer from LOTS of joint and muscle pain and I am only (35) Some days my joints hurt so bad I feel like I am in my 80's!!!
I seen a Lyme specialist years ago when I was first Diagnosed and to tell you the truth he really did nothing for me.. Ran some more blood test and sent me on my way.. I was first diagnosed like I said back in 1999 then my Doctor keep telling me I was fine because I was treated and that I should just move on with my life and stop worrying about it so much... Basically you were treated and that's enough... Then I started to feel sick again back in 2003 and I was tested again and told it was active and needed treatment again.. This was discovered during a routine physical.. So I was treated again on doxy for 3 weeks and felt horrible during that dose of antibiotics.. Then I became pregnant in 2004 and my OBG tested me to be sure everything was okay and I tested that I had lyme but the numbers were low.. whatever that means... He told me everything seemed okay and I shouldn't worry!
So here I am 9 years later and still have vertigo and horrible joint pain!!!
The Lyme specialist in my area was so much money and like I said really didn't do much for me.. He mentioned experimental treatment, I said NO THANK YOU!!
I guess my main question here is COULD Lyme really be the cause for ALL these symptoms I have been feeling YEARS after the fact, and will my balance issues be something that I will have to live with the rest of my life if it is attributed to the Lyme? My last blood test back in 2003 was as followed,
This is what it say:
23KD (Img band) Reactive*
Lyme Disease Interp (Img) Positive*
41KD (Img band) Reactive*
Lyme AB w/RFX screen 1.18 High L.I.V.
I am Not sure what all this meant I was just given more antibiotics and wasn't tested again until like I mentioned until I was pregnant which was in 2004 and was told everything looked okay.
ANY ADVICE on all this would be GREATLY APPRECIATED.
Hey Boxerlover! Long time, no "chat". I happened to see your name on the main page when I got on here today so I wanted to see what you were posting about. I'm sorry you're still feeling bad. I am too! I haven't been lucky like you were with your pregnancy. Don't get me wrong, I don't feel any worse than I did before, but I certainly don't feel better. I'm still "dizzy" all of the time and my heart is still super fast in the morning and super slow the rest of the day. It stinks. I was tested for Lyme and I tested negative. I did, however, test positive for EBV, but they said it would not be causing my problems that I have. I have also tried alternative medicine (acupuncture, holistic "remedies") and that turned out to be a bunch of bull. I'm sorry to read that you are still suffering. I'm right there with you.
As a side note...everything is great with the baby. We found out we're having a girl. I'm taking daily blood thinner injections and so far have had no complications. She is measuring right where she should be and everything looks healthy.
I am so happy to hear from you!! I check in on the pregnancy board but really haven't seen you around. Yeah a GIRL!!! I was so happy when I heard It was a girl! She is MY BEST FRIEND!! (you'll see)
I am happy to hear everything is going well as far as the baby, but sad to hear you are still struggling as well with this dizzy crap!
I am so fed up! I went back to the DR.'s and they gave me Zanaflex muscle relaxers for the headaches, saying they were tension. Did nothing but make me sleep. Then they gave me migraine medication, I won't dare take them due to the horrible side effects. Then they said SSRI's to break the cycle and perhaps help the dizziness. So I said NO I hate the side effects to any SSRI so I started posting on the inner ear board because I swear I have some sort of tube dysfunction. I met a guy there who swears by an amino acid called 5htp that is a natural ssri and is helpful to headaches, dizziness, sleep disorders, etc.. So I took a few and really haven't noticed a difference yet other then better sleep! I am so at a loss! I am so tired of feeling this way! I am sure YOU understand!! I tested positive for Lyme back in 1998 as you know along with positive to EBV. I think there is a connection, but still not sure. I just don't know how someone can be dizzy for 10 years and have no answers! I still am thinking that the tube dysfunction is SOMEHOW related to the TMJD because if you go on the inner ear board, EVERYONE there has OUR DIZZINESS. It's crazy!! Anyway that is where I am at, and you can usually find me there at that board.
If I find the answers YOU will be the first to know. I had a wedding this weekend and could hardly make it through my head was so heavy and floaty all the noise and lights made things worse. WE have another this weekend and I AM NOT looking forward to it the stimulation of all the confusion is too much.
SO are you still working? Any baby movement yet? Why the blood thinner injections? Are you okay? And How is your dad doing? God I miss our chats!!
Anyway - I've tried muscle relaxers too. They did nothing but knock me out. Right before I got pregnant, I was going to give amitryptiline (sp?) a try. I heard good things about it on the inner ear board. I hesitated for so long because of the heart side effects, but I finally got brave enough to try it. Obviuosly I never did. I still think we are having some type of weird migraine...or ear problem. I'm with you that we have been having these problems for WAY TOO LONG (especially you) without getting any answers. And with all the people on the boards that have the same problems, you would think that the doctors would at least TRY to help us, instead of just dismissing us a mental cases which they love to do.
I know how you feel about making it through weddings, etc. I hate trying to sit somewhere and feeling like I'm going to just fall over. I actually look around and get jealous of all of the people that can just hold their heads up normally while I feel like I need to hold it up with my hands!
Yes, I'm still working and probably will be up until delivery. I get short term disability after birth, but unless the doc writes me out of work, I will be here until the end. I have just recently started feeling her move. She has actually been VERY active for the first time today. I have to take the blood thinners because I tested positive (a year or so ago) for lupus anticoagulant. The shots hurt like heck, but they are worth it if they keep me from getting a blood clot. My dad is doing as good as he can be, I guess. He's always in a lot of pain, but still lives his life. I just hope my baby girl will keep him motivated to live.
How is everything else with you? How's the puppy? Any more thoughts on having another baby? It is good to know that pregnancy doesn't make this nonsense any worse, huh?
It was so good to hear from you!!! I will keep checking in with you now that I know where you "hang out" on here.
Last edited by moderator2; 09-17-2007 at 12:13 PM.
Wait until you want to sleep at night and she keeps kicking you in your ribs!
It's pretty wild, but I can honestly say the "best feeling" in the world! It's all so amazing and once they are here it is even more amazing. Sometimes I still can't believe she is mine! lol
I am sorry you have to go through the shots, but yes you are right it is better.
It's funny how you said you get jealous when you look at other people. I DO THE same thing. I look around wherever I am and say God how I would give just one day to be normal again! I hear people complain about the stupidest things I want to tell them, you don't know how lucky you are. BIG deal you got your Menstrual cycle on a weekend!!! I get so ******. Your right though some migraine thing maybe what we have, i will let you know if this 5htp works. I will be your pig! lol They say it helps migraine disorders but creating serotonin naturally. So we will see, I have just been so woozy lately I am at my wits end. There are so many that suffer like us and still no findings or answers.
The puppy is GREAT she is crazy though. She loves me and my daughter extremely protective, you can't walk on my front porch without her going crazy and if someone goes near my daughter she launches at them. She thinks it's her baby! BUT she doesn't like my husband She has extreme anxiety when he around. He never even yelled at her, she just growls and runs away from him. He is really upset about this but is trying to work with her, so we will see. We are thinking maybe next year trying for another baby. I would like to get all this straightened out first! (wishful thinking I guess)
Keep me updated. I wish there was a board where we can just chat about everything! Now that would be nice. I am sorry you are still struggling Leela, who knows maybe after you have the baby your body will change and all this will be gone. (again wishful thinking) I am glad to hear from you, will keep you posted and you do the same!!! Wishing you a happy head up day!!!
I have many of the same symptoms. Painful Stiff neck, eye sockets hurt, migraines, vertigo, and also PET (eustacian tube problems)...all came on in nov 05 following a bad cold. I will be losing my home, have no job as a result of my illness, life completely upside down, marriage in jeopardy, relationships terrible. I am in constant pain. I have seen a neuroligist, family doc, pain management, had PT for my neck...no good. Take pain meds everyday. Try to stretch and move my body....no luck. I was in Colorado in august of 05..where we stayed in the mountain area where there where dear. I never saw a tick bite on me...ever. I felt sick from altitude but not much else until a few months later...i was walking and felt like i saw blackspots in my eyes...and felt dizzy. I have never been the same. The doctors say it's not lyme disease. they also say...you have no brain tumor and some moderate spondylosis of the neck. I have had blood work, MRI, CT..all normal. I am beyond frustated or depressed about all this. My life is over...but I have will to live. I love my family and I love life but I have no answers or appropriate treatment. ...as you know specialists are expensive so I am out of luck unless i win the lottery. I have applied for state and fed disability and have had not one penny in 2 years.........anyone who might shed some light..all feedback appreciated. By the way...one year after my original symtpoms began nov 05...in nov 06 i got another bad cold/flu...like clockwork 1 year later.... a rare ear disorder called PET....the tube stays open not like it should...ear gets completely blocked and you hear your own voice like a kazoo...if that doesn't drive someone bonkers i don't know what would.please please help someone........
I might add...the neurolgist says sleep apnea...I got tested...treated with CPAP machine......a mild case. ....after using the machine for several months with no improvement....i got the cold/flu that led to the ear PET problem....after that I am unable and frightened to have air being forced in my eustacian tubes..and throat........what a dilema...my intuition says its not sleep apnea. I have been losing weight now...and really watching the foods after a super high cholesterol test... I eat healthy ....dropped 25 lbs and continue to diet. I do not want to use the cholesterol meds (serious harsh side effects are possible) as I already take so many meds now......high liver enzymes. I am a 41 year old man...otherwise previously healthy.
it's just turned my life upside down...thanks for the reply...it's so incredibly hard to deal with the pain...then on top of that not knowing the proper way to treat an illness that the doctors..shrug their shoulders..prescibe drugs...and have NO answers.......
Hi boxerlover. Although a bulls-eye rash is a definite sign of Lyme disease, only about 50% of people who have Lyme ever get a rash.
It sounds like you were not treated long enough and possibly not aggressively enough. Do you know if you were ever tested for the co-infections?
I highly recommend that you get evaluated by a Lyme knowledgeable doctor. If you need a doctor recommendation, let me know. Lyme disease can be passed through pregnancy and breastfeeding. If you had this when pregnant, you should have your child evaluated by a knowledgeable doctor also. It does not sound like the doctor you saw was truly Lyme literate.
No test for Lyme is completely reliable, and results can vary by lab. It is important to be tested by a Lyme lab such as IgeneX in Palo Alto, CA. Some people who have Lyme do not test positive. Regarding the Western Blot test you had done, below is the breakdown:
9 cross-reactive for Borrellia
12 specific for Bb
20 cross-reactive for Borrellia
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients
The IgM tests for a more recent infection and the IgG a longer standing one. Band 41 is often the first to show. Band 23-25 is a Lyme specific band. Your results are significant. You should be tested again since this was done so long ago. You also need to be tested for the co-infections.
Thank You for all the information you have sent me. You mentioned that my results are significant. I am assuming this means I do have Lyme.
When I was Pregnant back in 2004 I was tested by my OBGYN to be sure it wasn't reactive at that time. He didn't know to much about Lyme and whether or not it can be crossed to the baby, but he felt testing me was the safe thing to do. So he did and it came back good. So he said and told me there was nothing to worry about. And haven't been tested since. I KNOW I was under treated. I seen a specialist that wanted me to do some experimental treatment but the chance of being treated with placebo was high and I declined. I am unsure if I was ever co infected checked. BUT I do know EVERYTIME I get a Lyme blood test it comes up positive to exposure. I am wondering now if this is something I should mention to my child's Dr. and perhaps have her tested even though she doesn't seem to show any problems. I live in NY and I am NOT sure of a good Lyme Dr here. I went to a hospital that specializes suposibly in Lyme and that is where they wanted me to do the placebo (ginny pig thing) I wonder if I should contact my MD again and ask her to test me. I know If my readings do come back reactive she will just do a course of Doxy and send me on my way.
I am wondering what is long term effects if under treated??
I know for a 35 year old I DO have a lot of joint pains. And What is the treatment and success for recovery if all these balance issues and headaches are from the Lyme? I feel that somewhere for me being under treated the Lyme did effect my nervous system. I NEVER had anxiety issues, headaches, balance problems etc.. Until I was diagnosed with Lyme. BUT again my Dr. felt there wasn't a connection for this long.. I think it's time to find another Dr.
Hi boxerlover. I agree that it is time to see a different doctor!
You are lucky to be in NY. Some of the best Lyme doctors are there. The ones I know of who come highly recommended are Dr. Richard Horowitz in Hyde Park, Dr. Kenneth Lieger in Armonk, and Dr. Bernard Raxlen in Manhattan.
There is only one Lyme pediatrician in the country: Dr. Charles Ray Jones in New Haven, CT. He knows a lot about congenital Lyme. From everything I hear, he and his staff are awesome. You may want to call his office for feedback.
Although it can take time to recover and it is normal to feel worse before feeling better, with proper treatment you can get better. Keep me posted on your progress okay?