It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lyme Disease Message Board

  • Does anybody with lyme feel their balance is off?

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 06-23-2010, 01:13 PM   #1
    lala52
    Senior Veteran
    (female)
     
    Join Date: Jan 2010
    Location: New York
    Posts: 604
    lala52 HB Userlala52 HB Userlala52 HB Userlala52 HB User
    Does anybody with lyme feel their balance is off?

    I don't know if I have lyme but I have lots of lyme symptoms. Does anybody feel like they are walking on a slant sometimes. I have on and off an imbalance feeling. I don't fall though. Also my hands and wrists hurt and my knees. Besides the achy feeling all over. Also, does anybody have symptoms that come and go? I can feel ok one minute and all of a sudden all the symptoms can start. I get tingling on the top of head off and on also. I am thinking about getting tested from that company Igenex. It is expensive ad I am not covered. I have already spent a fortune with natural doctors and still don't feel good. I would love feedback from anybody suffering with some of these symptoms. I have lots of others too, but I am in a hurry now so I am not going through the whole story. Thanks. LaLa

     
    Sponsors Lightbulb
       
    Old 06-23-2010, 04:44 PM   #2
    jwick25
    Member
    (female)
     
    jwick25's Avatar
     
    Join Date: Apr 2008
    Location: Southeast PA, USA
    Posts: 99
    jwick25 HB User
    Re: Does anybody with lyme feel their balance is off?

    Hi lala,

    I have experienced feeling off balance, tingling, pain in ankles, etc. from lyme/bartonella. My symptoms also come and go at times. Some days, I feel horrible all day. Other days, I feel fine one moment and sick the next.

    Have you seen a Lyme Literate Medical Doctor (LLMD)?

    All the best to you!

     
    Old 06-23-2010, 05:10 PM   #3
    lala52
    Senior Veteran
    (female)
     
    Join Date: Jan 2010
    Location: New York
    Posts: 604
    lala52 HB Userlala52 HB Userlala52 HB Userlala52 HB User
    Re: Does anybody with lyme feel their balance is off?

    Jwick:

    I have not seen a llmd, but I have seen lots of natural doctors that are kinesiologists. Are you familiar with that? I am currently taking homeopathic medications for what he said is a virus in my body. So far it has been about two months. I feel a little bit better but certainly not normal. What is your llmd doing for you? Also what other symptoms do you have? I have had so many symptoms over the past four years it is not even funny. The thing that makes me questions whether it is lyme is because I remember when I first got sick I had a virus that I know I caught from a friend who I was exposed to when he had a really really bad cold. Probably a virus. I got sick about a week after seeing him and I was never the same again. The thing is if it were lyme I don't know if he would have happened that way. Thats what makes me feel the dr I am seeing now is right. That it is a virus that is lingering in my body. Clinically nothing shows up. I have been to a million drs. From cardiologists because I felt heavyness and pain in my chest to lung drs because I felt weird things there to rheumotologists thinking I had FMS or CFS, to gastro drs because of severe stomach problems. Oh, that reminds me, do you have stomach issues? I have had accupunture and massage therapy for my neck pain that the "neurologists" felt that my tingling on the top of my head could be caused from.
    How many drs. did I already mention? There are more I just can't think off the top. Plus I have been two at least 5 natural drs. that have taken all my money. I also get cold like symptoms. My nose will be a little runny and under my arms feel sore and sometimes a slight sore throat. Just once in a while with that. My arms and legs will feel achy like when you are getting sick. Do you have any of that. Any way, I hope to hear from you soon. Thanks for any info you may have. LaLa

     
    Old 06-24-2010, 09:21 AM   #4
    jwick25
    Member
    (female)
     
    jwick25's Avatar
     
    Join Date: Apr 2008
    Location: Southeast PA, USA
    Posts: 99
    jwick25 HB User
    Re: Does anybody with lyme feel their balance is off?

    Hi lala,

    Hmmmm...what symptoms have I/do I have...? Unfortunately, like so many others, it's a long list!

    When I was first diagnosed (2008), I had aches and pains, major lightheadedness that lasted all day, anxiety, trouble sleeping, tingling in arms and fingers, major neck pain, intense headaches, loss of appetite, chest pain, pressure and tightness, lots of weakness, etc.

    I am now flaring and have some of the old symptoms and some new such as ankle pain, back pain and soreness and swollen lymph nodes in my neck.

    It took me several months to get a diagnosis. A few doctors told me that it was all in my head. If I'd had the strength at that time, I might have been tempted to punch a few people.

    I went to an LLMD - at the suggestion of people on these support boards - and it was the best thing I did. She was able to run the appropriate tests and also diagnose me based on my symptoms and what ailments had already been ruled out.

    Before I saw the LLMD, I had already been in the hospital for a week and had seen Internists and a Rheumatologist who was able to rule out lupus, MS, etc.

    I was on meds for over a year before getting into remission. I'm now flaring and have been back on meds since April 2010.

    Dealing with this type of illness can be very scary. Personally, communicating with those on these boards has been so helpful.

    If you feel that you need to see an LLMD, you can create a post and ask for recommendations in your state. People will then send you private messages with doctor recommendations and feedback.

    Not being a medical professional, I can't say what it is that you have. However, this might be an important step to take.

    Have you had any relief? I hope you start to improve!

     
    Old 06-24-2010, 08:29 PM   #5
    lala52
    Senior Veteran
    (female)
     
    Join Date: Jan 2010
    Location: New York
    Posts: 604
    lala52 HB Userlala52 HB Userlala52 HB Userlala52 HB User
    Re: Does anybody with lyme feel their balance is off?

    Jwick
    I agree with you. A LLMD is probably what I should do. I have been to every other dr in the universe. Why not this one. I am just tired of going to drs that are not on my health insurance plan and have to pay more. I posted a thread asking for a LLMD on Long Island.
    Why were you in the hospital? You must have been really sick with this crazy illness. Also what meds were you on and why are you having flares? Is this going to be the way of life for lymies. What a way to live!!!! Hope you feel better and hope to talk again soon. LaLa

     
    Old 06-26-2010, 08:51 AM   #6
    jwick25
    Member
    (female)
     
    jwick25's Avatar
     
    Join Date: Apr 2008
    Location: Southeast PA, USA
    Posts: 99
    jwick25 HB User
    Re: Does anybody with lyme feel their balance is off?

    lala,

    I was in the hospital for 4 nights when I first got sick. I had no idea what was going on. I woke up one night shaking, sweating, etc. My husband took me to the ER where - get this - they told me I had a urinary tract infection.

    Days later, I got very sick at work. I saw the doctor (not an LLMD at this point) and had to be hospitalized. I was losing weight, very weak, shaky, out of it, lightheaded, etc.

    The doctor tested me for (almost) everything under the sun, but didn't know what was wrong. Therefore, he told me I must have a nasty virus.

    I eventually started doing research and looked into getting an LLMD. Although I had previously tested negative for tick-borne illness half a dozen times, I finally tested positive for bartonella.

    It was about three months of major illness before getting a dianosis. Very scary.

    The expense of treating lyme is very aggravating. I have read awful accounts of people losing their jobs, homes, savings, etc. Something truly needs to be done.

    I was on Doryx for over a year along with supplements. I was told that flares do happen and could surface due to stress. I had just lost my job before I flared. I'm guessing that was not a coincidence...lol.

    I have read about those who are able to stay in remission with proper treatment and lifestyle choices (appropriate diet, exercise, stress control, etc.). It seems that it can be done. My LLMD has been symptom free for 9 years.

    I'm sure others on this board can share some success stories.

    I hope you find a good LLMD in your area. Hang in there and stay the course. It can be difficult to trust the treatment at times, but if you have a good doctor, you will improve.

    Feel free to reach out any time if you ever need to chat!

     
    Old 06-26-2010, 09:23 PM   #7
    guido15241
    Member
    (male)
     
    Join Date: Feb 2010
    Location: Pennsylvania
    Posts: 90
    guido15241 HB User
    Re: Does anybody with lyme feel their balance is off?

    Quote:
    Originally Posted by jwick25 View Post
    My husband took me to the ER where - get this - they told me I had a urinary tract infection.
    jwick,
    My ER doctor told me I was dehydrated!

    Lala.
    Similar symptoms in my world and agree an LLMD can be beneficial to you. Best of luck.

     
    Old 06-27-2010, 08:05 AM   #8
    lala52
    Senior Veteran
    (female)
     
    Join Date: Jan 2010
    Location: New York
    Posts: 604
    lala52 HB Userlala52 HB Userlala52 HB Userlala52 HB User
    Re: Does anybody with lyme feel their balance is off?

    Jwick:
    I already practice good eating. Mostly lean protein and vegies. I do eat whatever I want when I go out for dinner. As an example, last night I went out and had two vodka and club sodas and had some bread from the bread basket and shared a little dessert and some fried oysters as a appy and broiled shrimp for dinner. Definitely a bad night. But I don't do that every day. I would say that is about once a week when I go to town. Otherwise, pretty healthy all week. But what do you mean by proper diet? Why does lyme need a special diet? I do go to the gym about 4 times a week. I take all kinds of supplements already and I take apple cider vinegar three x a day and extra virgin coco- nut oil three x a day. I put flaxseed in my food also. I also drink over a gallon of water a day because my natural dr said I was dehyrated. He actually wants me to drink 5 L a day. I am a water drinker but that is a bit much. So I pretty much on a healthy regimen. What kind of diet are you on? Speak soon. What I don't understand is how I can feel good one moment and then all of sudden feel horrible. Then I might feel good again later. Very strange!!!!!!!!!! And even in your case, you felt good for so many years and all of a sudden you are sick again. I don't get it. Hope you are ok. Talk soon. LaLa

     
    Old 06-27-2010, 08:06 AM   #9
    lala52
    Senior Veteran
    (female)
     
    Join Date: Jan 2010
    Location: New York
    Posts: 604
    lala52 HB Userlala52 HB Userlala52 HB Userlala52 HB User
    Re: Does anybody with lyme feel their balance is off?

    Guido:
    What is your story? How did things start and what are your symptoms and what have you done? Look forward to hearing all about it. laLa

     
    Old 06-27-2010, 08:17 AM   #10
    jenj770
    Inactive
    (female)
     
    Join Date: Aug 2007
    Location: NYC
    Posts: 1,434
    jenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB User
    Re: Does anybody with lyme feel their balance is off?

    Lala,

    Regarding alcohol, I guess some lymies can handle it, but even a half glass of wine will put me in a flare. It took me awhile to realize that any alcohol upped my bacterial load, and I never had more than 1 or 2 glasses of wine to begin with. I've heard throughout the years that actually many people with Lyme also are alcohol intolerant. I know that many LLMD's ask that it be avoided completely. Just thought I'd put this "out there". For me, foregoing the occasional wine with dinner was a small price to pay to avoid "flares", especially of the neurological variety, which I think alcohol, especially, induces.

    Jen

    Last edited by jenj770; 06-27-2010 at 08:18 AM.

     
    Old 06-27-2010, 08:37 AM   #11
    jwick25
    Member
    (female)
     
    jwick25's Avatar
     
    Join Date: Apr 2008
    Location: Southeast PA, USA
    Posts: 99
    jwick25 HB User
    Re: Does anybody with lyme feel their balance is off?

    Hi lala,

    I was also advised against alcohol. I was actually in remission for only 8 months before getting sick again. I'm considering another LLMD for a second opinion.

    I have been told to avoid certain things such as sugar, wheat, etc. I was advised that the bacteria can feed off of these things and make you worse. There seems to be many different dietary suggestions out there. I'm always trying to learn more where I can.

    In the summer, I love to have Corona with lime, but it's just not worth risking a flare.

     
    Old 06-27-2010, 09:27 AM   #12
    guido15241
    Member
    (male)
     
    Join Date: Feb 2010
    Location: Pennsylvania
    Posts: 90
    guido15241 HB User
    Re: Does anybody with lyme feel their balance is off?

    Well Lala, my story. Thank God I kept a daily log when symptoms started. I was eventually diagnosed with Neuro Lyme & Rocky Mountain Spotted fever. There is a chance of another undiagnosed coinfection. Here goes:

    In July 2009, there were two ugly bite marks on left arm. I received some bad advice from PCP indicating since there was no rash or bullseye, it would be ok. This was the first in a series of bad advice I blindly trusted.

    In October, the wife and friends noticed mood swings and irritability in my personality. I also started having weakness, palpatations and getting less sleep.

    November 1st: Woke up in morning with a mild constant headache on left side of head. It did not go away all week. Called PCP and he said to go to ER to get checked out. ER did CT Scan, EKG, and tested blood sugar plus other blood work. All tests normal and suggested I see Neuro.

    November 12: Saw Dr XXXX for headache and I had slight tingling on side of face/head. He prescribed generic Topamax (a migraine med) but neglected to inform me of evil side effects (more bad advice).

    Nov 13: Started to have slight tingling sensation on left hand and left foot. Dr XXXX attributed it to Topamax side effects and said not to worry (bad advice).

    Nov 19: Had no contrast MRI of brain which looked normal. No signs of stroke, tumor, or MS. Headache becoming worse, tingling worse.

    Nov 23: Almost passed out several times from dizziness. Cannot concentrate, headache is bad, and very tired. Topamax is making symptoms worse. Noticed hot tea makes me feel better.

    Nov 25: Started taking B Complex and Magnesium. Asked Neuro to start running tests to find cause but he ignored request and said to give Topamax time to work. Started cutting back on Topamax regardless.

    Nov 28: Started 1st Medrol (steroid) Pak and headache immediately felt better. Weaned off Topamax by now.

    Dec 4: No change in symptoms. Saw another Neuro for a second opinion. He could not explain tingling and suggested I have a Hemi Crania Continua. He prescribed Indomethicin. Dr XXXX prescribed another 1 week Medrol Pak. Noticed long hot showers helps with numbness and tingling.

    Dec 8: Noticed bad neck pain at base of skull.

    Dec 10: Saw Dr XXXX again today and he suggested Orthopedic doctor. He also did blood test on thyroid, renal function, and sediment test. All normal. He prescribed Gabapentin.

    Dec 11: Hands shake.

    Dec 17: Did EMG and NCV and results normal.

    Dec 22: Had cervical MRI of neck. Everything normal. No pinched nerves.

    Dec 29: Started feeling very cold day and night. Cannot sleep.

    Dec 30: Tingling has moved up arms and legs. My groin and head also tingles.

    Dec 31: No improvement in symptoms. Started third Medrol Pack in six weeks from Dr XXXX.

    Jan 6: The tingling in my arms and legs have progressed into burning sensations. I requested Dr XXXX test me for Lyme (AB IGG) and heavy metal. Dr XXXX also tried spinal tap but was unsuccessful. Wanted me to reschedule for x-ray spinal tap.

    Jan 8: IGG Lyme test came back as mixed and took more blood work for Western blot. Begged XXXX to start on antibiotic but he refused. Getting four hours of sleep per night from burning sensations, coldness, and shaking. Muscle twitching is also keeping me awake.

    Jan 9: Spent $$$$ on Vitamin C, Acidophilus, CO-Q10, Alpha Lipoic Acid, Omega 3/6, and Gloucasimine. Still taking multi vitamin, magnesium, and B complex daily. Now having full blown flu/neuro symptoms. Went to Hospital ER and they did nothing since Lyme test was inconclusive. The hospital did do a titer Lyme test. Started high protein, low fat, low carb diet. Cut out sugars, sugar substitutes, and MSG. Started drinking lots of green tea. Feel like I am going to die.

    Jan 10: Little change in condition but mild exercise helps. Started taking hot shower/ Epsom bath to sweat. I do this 1-2 times daily. Still feel horrible and only getting four hours of sleep. Cannot function at work but still go.

    Jan 13: Saw LLMD today. All three Lyme tests came back as marginal or negative because tests were done 1-3 days removed from steroids which drop Lyme antibodies. However, I have all the classic lyme symptoms. Retaking Lyme blood work and coinfections/other tests as well with Igenex Then, I can start on Doxy and other supplements doc required. Stick with what I have been doing over past week (diet/supplements) and get rest. LLMD's outlook on my prognosis was positive.

    Jan 18: Did Igenex blood work (6 bands positive) and started Culturelle, and Sacc Bacc. No change in symptoms (nasty headache and tired). However, I have been experiencing a dry cough the past few days.

    Jan 20: Started 1/2 dosage Doxy LLMD prescribed. Felt real tired and hard to concentrate.

    Jan 27: Started taking Mangosteen juice hoping my vision will improve. Tired, hard to concentrate, but my tingling has become worse since starting antibiotic which is probably herx.

    Feb 3: Started taking 400mg Doxy. Feel like crap when it kicks in. Feeling cold and headache is coming back. Herx sucks.

    Mar 7: Every day so far has been Hell since starting abx.

    Mar 22: Experienced real bad dizziness today which is a new symptom.

    Mar 24: I have been having pain in groin and mid section from groin to beginning of ribs. February was not a good month but March seems to have a slight lessening of the herx symptoms and overall well being is a little better. Brain fog and energy is better.

    Apr 9: No change with throat, cough and groin pain. The last four weeks since 3/7 have been better with a lessening of the original January symptoms. The herx is not as bad right after taking abx. I have also been sleeping better at night the past four weeks.

    May: Most of my symptoms are starting to lessen except for the numbness and tingling which has not improved at all. My adrenals are very low and but slowly getting better compared to previous months. My symptoms that showed improvement but still lingering are muscle twitches, brain fog, low energy, neck pain, shakiness, vision, chills, palpatations, and headache.

    June: The soles of my feet occasionally hurt and I have frequent abdomenal pain. My adrenals are low and it takes days to recover when doing too much. Slightly better from May.

    Summary: Each month, I show improvement to the pleasure of my LLMD. He said he was very proud of me to stick with the regiment of diet, exercise, etc and was "confident it will get better" but no timeline exists for that goal. This a just the greatest hits but the first two months of treatment was a daily Hell.

     
    Old 06-27-2010, 03:44 PM   #13
    lala52
    Senior Veteran
    (female)
     
    Join Date: Jan 2010
    Location: New York
    Posts: 604
    lala52 HB Userlala52 HB Userlala52 HB Userlala52 HB User
    Re: Does anybody with lyme feel their balance is off?

    Hi Jwick, Jen and Guido:

    I can't believe the things I am reading from everyone. It is amazing how debilitating this lyme disease.
    Guido, it sounds like you have been through hell and back. Do you live in the NY area? I have some of your symptoms, but as sick as I thought I have been, I think you have won the prize. It sounds like all of us are going to have to live with this forever. I am glad to hear you are getting better though. But it is scary because you never know from one moment to the next what is going to happen.
    Jwick. I can't believe that just stress can be a setback. You would think that we could just get rid of this thing forever.
    Guido, are you on a low everything diet also. The diet really stinks. I have been on a low everything diet because I got diagnosed with Candida of the intestines after all my symptoms started. One of the big problems was excessive gas. And I mean excessive. It did not stop all day. It is a little embarrassing to discuss this but it is reality. I have been on millions of anti candida supplements and of course pro-biotics as well. Finally, it is a little better but still not as good as things were before my sickness started. It does not seem like I have heard this problem as much from other lyme victims. Maybe mine is a combo.
    Anyway, I hope they come up with a better cure for this horrible disease. Take care every body. Lets stay in touch!!!!!!!!! Bye for now. Lala

     
    Old 09-27-2010, 08:40 PM   #14
    JPron
    Newbie
    (male)
     
    JPron's Avatar
     
    Join Date: Sep 2010
    Location: Canada
    Posts: 8
    JPron HB User
    Re: Does anybody with lyme feel their balance is off?

    @lala52

    Sorry to slightly hijack this thread, though I wanted to make a comment on your ...gas issue. I've seen many people in here talk about Lyme and it's typical co-infections, yet I have been diagnosed with 2 OTHER Parasites that I know can cause some seriously excessive gas (and cause symptoms close to Candida). The 2 Parasites are called Blastocystis Hominis and Dientamobea Fragilis and I strongly recommend getting a proper stool test (A 3-Day Stool WITH Fixative, NOT a 1-Day Test) done when anyone mentions IBS, Food Intolerance or any GI Issues.

    The two parasites can cause hell for a persons GI tract and are getting more and more common (it seems Western Medicine is so busy treating symptoms we forgot to research Infections....) Both bugs have faced the same non-sense that Lyme does, however they can be treated with SHORT-TERM anti-parasitics/biotics. Anyway, if you are interested google 'badbugs' (one word) and check that page out from an actual suffer. She has dedicated a decade or so to maintaining a site with info on them.

    Anyone with IBS/GI symptoms should check into this, if they can. It will really help your digestion (if these two are present and taken care of) and therefor health overall.

    Take Care,
    J

     
    Old 10-08-2010, 10:39 PM   #15
    lala52
    Senior Veteran
    (female)
     
    Join Date: Jan 2010
    Location: New York
    Posts: 604
    lala52 HB Userlala52 HB Userlala52 HB Userlala52 HB User
    Re: Does anybody with lyme feel their balance is off?

    jpron: sorry for the late reply but you did not appear on my regular mail. You were on my spam which i hardly ever check. Anyway, thank you. I have done a three say stool. Negative results. I will check out that info on-line thank you. I hope you are doing better. Let me know. And what were your symptoms and do you know how you got the parasites? talk soon. LaLa

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Lyme or Meniere's? 2drummersmom Lyme Disease 16 04-14-2009 01:08 PM
    Lyme Disease?? What does a bite look like? worried1234 Lyme Disease 2 07-03-2007 06:34 AM
    What does Advanced stage lyme mean? kittyvfs Lyme Disease 3 05-22-2007 01:33 PM
    Lyme Question? boxerlver227 Lyme Disease 8 11-14-2006 09:50 PM
    Does anybody think this is Lyme? cappy77 Lyme Disease 12 10-31-2006 07:47 AM
    Has anybody experienced aggravated pain level? june789 Fibromyalgia 15 07-22-2006 07:56 PM
    Can you get Lyme from something other than a tick? Sco24 Lyme Disease 19 06-02-2006 06:38 PM
    Lyme and G.I. Symptoms 10D Lyme Disease 16 03-23-2006 03:17 PM
    Lyme. Why treatment is a$$ backwards itsmylife Lyme Disease 15 03-22-2005 06:54 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 09:08 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!