Feeling "Wobbly" or dizzy?

Discussion in 'Fibromyalgia Main Forum' started by kch64, Apr 10, 2012.

  1. kch64

    kch64 New Member

    Do any of you experience the feelings like you feel slightly drunk even when you aren't? or do you feel like you might fall into a big pile on the floor? I call it feeling like spaghetti LOL.

    I don't take any medications except for thyroid and propanolol for headaches, so it can't be narcotics or anything. I've been getting this sensation for about 3 years. Was diagnosed with FM 10 years ago.

    Do you ever feel dizziness? I sometimes feel like if I'm in a car, and I turn my head, I feel off balance. I've been to doctors and had vestibular testing. Nothing showed, which makes me think it's FM.
  2. deepak

    deepak Member

    Yes, I get dizzy sometimes if I suddenly turn my head - so i avoid jerky movements.
  3. Nanie46

    Nanie46 Moderator


    Often people who have been diagnosed with FM or CFS, have later found that the root cause of their symptoms are chronic, untreated infections.

    The off balance/dizziness feeling that you decribe has been associated with Babesia infection.

    Muscle pain, stiffness, headaches, and a lot of other symptoms can be associated with Babesia, Borrelia (Lyme disease) and other infections.

    Testing is often unreliable for Lyme and Babesia, etc.

    In this link on page 26, it lists the dizziness/tippy feeling (off balance) as it relates to Babesia infection:


    There is additional info on pages 22-27 for Babesia, Bartonella, etc.

    There is a great comprehensive symptom list on pages 9-11 of the above link.

    Here is some more info for you to read:

    the next link has great info and a symptom list:




    There is a new culture test for Lyme that is much more accurate:

  4. Kittyweird

    Kittyweird New Member

    Yes, I have those feelings! I had all the tests for vestibular & infections.
    They would do the manipulations, pronounce me "cured" & ten minutes later I would feel dizzy & off balance again. These sensations come & go for me. I have had to start using a cane partly for balance issues. I have come to the conclusion that it is a fibro thing, which makes sense to me as Fibro attacks the central nervous system.

    I find that Pro Health's Fibro Freedom helps as well as Ginger capsules, but nothing eliminates it completely. No more roller coasters for me (which I used to love!). I can never look backwards while riding in a car & flying is pure hell for me.
  5. Nanie46

    Nanie46 Moderator

    My western blot for lyme was CDC negative, but I have chronic lyme.

    The tests are very inaccurate. Plus, Lyme supresses the immune system, so when you have an antibody test, often you are not producing antibodies.

    I did have an Igenex western blot and that's where I found my clues...I had a few lyme specific bands that were positive or indeterminite. Other typical labs (Labcorp, Quest, etc) do not test for all the bands that Igenex does.

    Plus I had a positive result for Rocky Mt Spotted Fever.

    Lyme and other coinfections are clinical diagnoses (based on history, symptoms, exam and labs) and should never be ruled out with just a negative test.
  6. kch64

    kch64 New Member

    I am ok some days, and others I'm just a mess (haha). I feel slightly drunk or just that my head is going to topple and my body will follow. Thanks for your input
  7. kch64

    kch64 New Member

    Based on your input, i have located some LLMD's. They are all about 3 hours drive away from me, but I will go see one of them, when I can. Thanks for your input.

    How is Babesia treated? Tks.
  8. Nanie46

    Nanie46 Moderator

    You're welcome!

    Thank you for being open minded and considering this possibility.

    Babesia is often treated with Mepron, Zithromax, Artemesia and sometimes with some other meds such as Malerone, Bactrim DS, etc.

    You can read about Babesia symptoms and treatment at this link on pages 22, 23, 24, 26, 27:

  9. Spacey

    Spacey Member

    I have the dizzyness, off balance symptoms every day now for many years. Iv'e had all the tests and nothing show up or helps to make it better. I don't have lyne! My doctor says it's a neourological symptom. It is a symptom of Fibro also not just lyme. My ears hurt all the time like I have an ear infection , but don't. I also have tmj, and have done everything I can to help it, but to no avail. I don't have babesia. Iv'e had all the lyme tests, includeing the igenex. Good luck. but the best iv'e been able to come up with is to learn how to deal with it. I have trouble bending over, lying down, getting up, sometimes just eye movement will do it. It's a tough one. Spacey
  10. kch64

    kch64 New Member

    Thanks for the input. Hope you start to feel better from this.
  11. Nanie46

    Nanie46 Moderator

    Just an FYI:

    Lyme tests are very inaccurate. My lyme tests were "officially" negative but I have lyme. I did have some lyme specific bands show up on my Igenex western blot, even though the CDC would interpret it as negative.

    There are many reasons why standard Lyme tests are inaccurate:



    My LLMD says that those lyme specific bands that showed up on my Igenex western blot are huge clues.

    There is a new, more accurate, Lyme Culture test that does not rely on antibodies that your body may be too immunocompromised to produce:


    Not everyone has lyme. There are many people who do have some of these infections, though, who do not know it, often because their Dr has relied on the result of very unreliable tests.

    The Chronic Lyme segment on the Dr Phil Show that aired on Friday, April 13 2012 addressed the fact that Lyme tests are very inaccurate.

    On page 7 of this paper by a Lyme expert, Dr B says that the ELISA test is not sensitive enough to be used as an adequate screen:


    He also talks about which bands he considers important on a western blot...many of which typical labs do not even test for.
  12. Allen

    Allen Member

    Yes, I too have dizzy spells and they make me feel out of control. I think many of us Fibro folks have this.
  13. kch64

    kch64 New Member

    for the information. I guess it's part of the bad deal with FM. Will let you know if I find anything that helps.

  14. whoopingcrane

    whoopingcrane New Member

    Have you been tested for Lyme Disease? If not get the test from the Igenex Lab in California.
  15. fm2011

    fm2011 Member

    Yes, I get dizzy. I've read all of your replys and agree with them. It can be caused by numerous infections or by the fact that fibro effects every system in our body including our sense of balance. On days when my pain is more severe I am car sick, even though I was never car sick before my fibro reared its head. I also feel like I'm drunk and I don't drink.
    The other day I bent over to pick up my miniature poodle and toppled right over LOL. Nothing woas hurt except my pride and a bruised hip.
  16. kch64

    kch64 New Member

    LOL, sorry you toppled over, but I know how you feel. I don't feel like that everyday, but some days, I feel like I'm going to fall over/down.

    Glad you are ok. Thanks for posting.
  17. peekroman

    peekroman New Member

    Hi everyone. I'd like to pass along my story. To make a long story short, I had a tick bite in June 2000, had many health issues (including the dizziness that you are all speaking about), was diagnosed with Lyme in Jan 2004. Then later was diagnosed with Babesia Microti. Then somewhere along the line, one of the doctors identified Mycoplasma Fermentans as well (which I've never been treated for).

    The meds for Lyme (doxy, rocephin) and Babesia (mepron, malarone) took care of maybe 80-85% of my issues. I got sick and tired of doctor visits and meds, so I stopped everything in 2005. I had to leave work (a professional career since 1973). In Nov 2010, I went back to work in a lesser but similar capacity out of necessity. Since working my fatigue, dizziness, near syncope (honestly, like a spaghetti noodle collapsing - I refer to it as the Wicked Witch of the West melting in place), night sweats, .... are back. The doctors here (I'm in a diff state than before) are not Lyme literate at all. I am going to Columbia University for a 1.5 day neurological exam and hope to find exactly what I still have and how to treat it.

    I am now reading "Chronic Fatigue, Fibromyalgia & Lyme Disease" which I find very informative. I'm finding that the Mycoplasma might be the clue to why I'm not getting better.

    That's my 2 cents!!! Good luck, everyone with whichever way you approach these issues.
  18. Nanie46

    Nanie46 Moderator

    Thanks for sharing your story.

    I'm sorry to hear that your babesia and lyme symptoms are back. Hopefully you just need to treat longer.

    Another infection to consider that could be contributing is Protomyxzoa Rheumatica (formerly known as FL1953). That is the bug that Dr Fry discovered in mosquitoes. He said it is similar to Babesia.

    Betterhealthguy has info on his site about this pathogen, or you can Google it.

    Info is somewhat limited at this time since this bug was recently discovered.

    Fry labs in AZ tests for it.
  19. tonydewitt

    tonydewitt New Member

    Since dizziness and chronic infection were mentioned, I wanted to suggest HTLV testing - since HTLV can cause FM / CF, it's worth testing for HTLV - please consider testing for it.
  20. Diana_in_CA

    Diana_in_CA New Member

    Don't think I've seen that abbreviation before. Thanks, Diana

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