posted
I have just recently been diagnosed with Lyme disease. In February (superbowl sunday to be exact) I woke up to extreme vertigo, room spinning, could not walk and vomiting. Spent one night in the hospital and was out of work for over 3 weeks, before I could even function enough to where I felt safe enough to drive myself to work. The vertigo has never really gone away completly but it is "manageable" and I have had two smaller episodes where I missed a day or two of work. Now I am getting mild head aches and my head feels very heavy almost like I have "medicine head". I was doctoring with an ENT and she was checking for an inner ear auto-immune disease since I was already diagnosed with one auto immune disease almost 10 years ago. In that panel of tests they ran was the Lyme test which came back positive. She gave me two weeks of anti-biotics (Doxi)because my doctor was on vacation and I will see my regular doctor this week when she returns. My question is: Has anyone else had this symptom of vertigo or dizziness? Did it go away after taking the anti biotics? I am really starting to believe that all these years it may have been lymes and not ankylosing spondylitis like they originally diagnosed me with 10 years ago Thanks for any information you can give me...
Posts: 10 | From MN | Registered: Aug 2011
| IP: Logged |
posted
My daughter had severe vertigo and visual issues. Treatment for lyme disease has made a huge difference. Within a month of starting antibiotics, she started to improve. There is inner ear damage though and I am not sure if it will ever go away totally...but, it did stop the progression and make things less severe.
Did you have an ENG or other vestibular testing done with the ENT?
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
| IP: Logged |
posted
Thanks for the info I to have been dealing with eye issues for at least 5 years. Extremely dry eye, burning watering eyes and very light sensitive. I also have some blurry vision at times but my job requires me to be on the computer most of the day so I attributed it to that. I believe I did have an ENG done, Is that the big hearing test that they do to check for Minnears also? Can I ask what kind of treatment your daughter has been doing? Also, does she see an LLMD and if so how did she find him/her? I have been searching the internet but it is very hard to find one. Thanks so for your quick response Posts: 10 | From MN | Registered: Aug 2011
| IP: Logged |
posted
My daughter's vision issues are with convergence, eye teaming and tracking. At this point, it is mainly her vision that triggers the vertigo.
An ENG is where they use water or air to stimulate the inner ear to see if vertigo occurs...in a nutshell. It also assesses the visual system to see if there are abnormal eye movements. There are other vestibular tests as well.
Some people with vertigo have normal ENGs with no vestibular damage so to speak.
My daughter has done balance therapy to retrain the vestibular system, visual therapy to retrain the visual system along with proper treatment for tick born diseases.
There is a seeking dr. section on this forum. If you post there, someone from your state should message you the names of some Dr.s that are lyme literate.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
| IP: Logged |
posted
No I dont believe that I ever had that test. I know all my inner ear tests came back normal. They did check me for abnormal eye movements and that test also came back normal. I am sure I will be doing some therapy for balance as well, they did say if the vertigo did not go away that would be the next step. I did post in the dr. section so I am hoping someone responds soon. Thanks again.
Posts: 10 | From MN | Registered: Aug 2011
| IP: Logged |
Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Bobbi45-Vertigo was one of my initial symptoms. I had all the tests done and they could not find the reason for it. When I first got sick, I had nystagmus which is when your eyes move left to right for no apparent reason, this is common with vertigo.
I believe the infections just get in the ears and cause this. Whether its fluid or swelling Im not sure. Treatment should help you feel better. Mine got better over 6 months without treatment (before I knew I had lyme). I suspect Lyme and/or Bartonella for this issue, be sure you get the proper co-infection testing thru Igenex Labs.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
| IP: Logged |
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Dizziness was my most problematic symptoms. I didn't have spinning vertigo..it was more of an off-balance, dizzy, drunk feeling. It was constant 24/7.
IT is GONE now with treatment (very thankfully.) I'm still treating...it has now been 15 months.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
| IP: Logged |
posted
yes - both my daughter and I have vertigo due to Lyme; it was one of my first symptoms. It did get better for both of us after a long time on ABX but it still appears from time to time.
I had room spinning; feeling as if floor/furniture were moving; feeling as if I were flipping over backwards when lying down; and yes, the walking/moving like a drunk. My eyes tell me where I am now, more than my inner ears.
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
| IP: Logged |
Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
ESG-Wow! I have had all of those, especially the flipping over backward feeling, and you are the first person whom has mentioned that also. What co-infections do you have? I believe mine is Bartonella, as that is what Im treating now and having those issues reemerge.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Bobbi, your symptoms sound almost identical to mine.
About 14 yrs ago I awoke with a vertigo attack (never had one before) I couldn't get myself to the hospital but did call ER . Finally was able to get to the doc the next day, walking like a drunk. I was out of work 3 months, went back one day and never able to return. They were treating me for an inner ear infection, sinus etc. Then mono. Finally the ENT did put me on an abx which did help with the sinus issue.
Spent so many years trying to get a dx. Like you was dx with an auto-immune disorder, cfs/fm. Told it was panic / anxiety/ depression and on and on.
I am still bothered with blurry vision, off balance, what I call a weird feeling in my head and ears ringing 24/7 ..When I feel a vertigo coming on I take a xanax and a decongestant for some reason it lessens the vertigo. Mine would last for a day and come and go for days after the attack.
I do think it was all Lyme related . The abx did help but not a cure as I had so many side effects with abx. Saw a LLMD and now am pulsating my meds which I am not sure if they are helping. What has helped is diet. Gluten, dairy and sugar free.
Abx have helped so many but so far not me.
Keep us posted.
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Babesia is a co-infection often acquired with Lyme. It causes vertigo and dry irritated eyes.
I had vertigo, ataxia (walking like a drunk) and the feeling of being drugged. When I first started treatment it worsened for a short time. Now it is gone.
You need to see an LLMD that knows how to diagnose which infections you have as well as the treatment that will get you well. Most main stream doctors are very ignorant about lyme and give too little antibiotics for too short a period of time.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
Thank you all for the great information. My appointment with my doctor is tomorrow, and I am gathering lots of good information. I just have a feeling she is going to poo poo this and not do much about it. She has been very good so far, but sometimes she has made me feel like "its all in my head"
Some of you have said you had blood work done through Igenex, how did you have this done? Did your family doctor order it or you LLMD? I do believe I have Babesia because of the vertigo and I have been suffering with extremely dry irritated eyes for 4 or 5 years now. I also have had a chicken wire rash on my leg that has been there for months, but I thought it was from sitting with my laptop on my leg for hours on end when I was so sick in February with vertigo..LOL Of course now it seems to be fading with the antibiotics. My sister was urging me to go and get it looked at, and I thought she was crazy, now it seems like I was the crazy one.
I am so glad I found this website. Thanks again and I will let you all know how my appointment went! Bobbi Jo
Posts: 10 | From MN | Registered: Aug 2011
| IP: Logged |
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Bobbi Jo,
How did your appointment work out??
For me, the severe vertigo was the tipping symptom that something was really, really wrong. Unfortunately, mine progressed to seizures, so please be sure to get proper blood work and diagnosis and treatment that really works for you!!
Unfortunately, Lyme goes to your head within a few hours, so the "all in your head" could be right, but not the way your doctor is thinking!! LOL!! Please, don't get put on psychiatric drugs for this condition--they have serious adverse effects and do nothing to handle your real physical illness.
Any doctor can give you a prescription for the IGeniX tests. Also, get tested for co-infections. A good source for info is the BetterHealthGuy website.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
| IP: Logged |
posted
Hi Cass, Well, my appointment went "ok"..I saw my primary doctor because she was on vacation the week before. She said I do not have Lyme. I am not sure how they read the tests but she said the np read the test wrong. I only tested positive on two of the top portion of the test and only one out of three on the western blot test. I am still slightly dizzy and very tired, but I am managing. I will be seeing my rhuematologist in a few weeks and the neurologist also. It is just so weird..have so many symptoms of Lyme..can you still have Lymes without a positive test? I am kinda relieved and frustrated at the same time..its been a very emotional week.. Thanks so much for all of your support..what a wonderful group this is! Bobbi Jo
Posts: 10 | From MN | Registered: Aug 2011
| IP: Logged |
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Lyme is a clinical diagnosis. That is, the doctor doesn't need a blood test to diagnose a case of lyme.
That being said, for more info on Igenex testing, you can go to their website. There is a lyme test there for around $200, I think it is Test #189 or 190. Look at their info., call them. I didn't think they were that helpful on the phone, but keep at it.
Did the short course of doxy help at all? If you also have babesia (which for me caused the vertigo and dizziness), doxy won't touch this.
You really need to find a lyme literate doctor to properly determine whether you have lyme and/or coinfections. That's truly the only way you will keep from chasing symptoms down until you are blue in the face.
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Bobbi, my western blot was only positive for two.. But when I was tested by Igenex more were positve my LLMD said Lyme. All my symptoms sound so much like yours, started with the vertigo.
My PCP thought MS but turned out lyme. The rheumy and neuro was a joke. Please I am not saying you do or don't but continue to get answers.
Feel your frustration.
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
quote: I also have had a chicken wire rash on my leg that has been there for months,
Does your rash look like this? If so, this is a bellweather symptom you've had Lyme for a long long time. I have it on my arms.
Your regular MD does not know how to read the test - you did pull reactive bands on the test and this would only happen because you have Lyme. Testing is used IN CONJUNCTION with symptoms to aid in the diagnosis.
Your very dry eyes could be a sign of magnesium deficiency (which those with lyme almost always have). I had this too, and it went away once I began intense magnesium intake.
Please save yourself the critical time and wasted copays and get to an LLMD.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
BTW - My first symptom was the type of vertigo you experienced. And I went through the usual round of endless 'specialists' and was told it was stress.
FWIW- a neuro I saw gave me Valium for the dizziness. He said 2mg twice a day was standard treatment for Meniere's (my ears ring beyond belief and have for 15+ yrs). And it made the difference between my spending the day on the couch not moving and getting me up and off to work. He said it shuts off the inner ear and allows your body to balance itself.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
posted
oh yes, forgot about the ear ringing .... so used to it by now!
YES: you can have Lyme and test negative.
I did not test positive for co-infections with my ILADS LLMD tho' I still got a short course of Mepron (had to stop due to hallucinations), so that may have helped. What seems to help me the most is Doxy with Tindamax.
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
BobbiJo, run don't walk to find an ILADS lyme literate doctor(International Lyme and Associated Diseases Society). Go to(lymediseaseassociation.org). In my opinion (not a doc), they know more than any of the other doctors (more up-to-date info).
You can fail the western blot and still have lyme. That test has a 30-35% false negative rate, which is why I'm here.
You can also post on this site in "Looking for a doctor", but you'll have to check to see if they are Ilads affiliated.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
Thanks everyone for all your advice..the more I read about Lyme the more confident that this might be it. The rash on my leg has started to go away..its been there for months and now that I have been on anti biotics it is going away? hmmm.. I have gotten so many good responses to my post in looking for a dr. that I have many good leads. I do have 2mg tablets of valium that I can take if I need them and they really do seem to work. Make the dizziness more manageable. Do any of you know if a LLMD will even see me if I tested negative on my test? And do any of them take insurance or do you have to pay out of pocket? Thanks again for all the wonderful advice it is greatly appreciated!
Posts: 10 | From MN | Registered: Aug 2011
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I believe the best ones don't take insurance. Have you seen "Under Our Skin" yet? It's an incredible documentary that explains everything. You should definitely get yourself a copy and share it with your loved ones. I think Amazon has it.
Any LLMD, especially one affiliated with ILADS, will see you, test or not.
Don't worry about your test. Once you watch "Under Our Skin" you will see in the documentary that lyme is correctly diagnosed clinically, so even if your blood test is negative, you cold still have lyme.
You may also want to pick up a copy of "Cure Unknown." It's an awesome book.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
Thanks Mindy I am looking into it now! I just want to feel better..its been way to long!
Posts: 10 | From MN | Registered: Aug 2011
| IP: Logged |
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I don't know why but I have vertigo today. Forgot how miserable this is.
Anyways, allergy tabs seem to help me. You might try that too.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
| IP: Logged |
posted
bcb - What you wrote here -- Dizziness was my most problematic symptoms. I didn't have spinning vertigo..it was more of an off-balance, dizzy, drunk feeling. It was constant 24/7.
IS EXACTLY what I have, and not ONE doctor I have seen understands what I mean. It is constant like yours was and is NOT VETIGO. It feels like I'm dizzy "in my head" and like I've had a few glasses of wine...
SO glad you are feeling better!!! There is hope..
2 questions: how on earth did you get the drs to understand this feeling?? and what med do you think got rid of this horrible feeling in your head??
thanks so much...
desperate since this has been going on 24/7 for 3 years now.
Posts: 82 | From NJ | Registered: Mar 2011
| IP: Logged |
posted
Just saw my PCP about my dizziness and "drunk" feeling. I have that same feeling like I just had a couple of glasses of wine. It is worse when I don't get a good night's rest. Which lately seems like every night. She diagnosed as vertigo. She mentioned my eyes jerking back and forth were a true sign. Since I started doxy two wks ago, it seems to have gotten worse. Is there hope that it will get better? I start Rifampin tomorrow and hope with both meds that it will. BTW - I had this same feeling two years ago and never dreamed that it was from Lyme.
Posts: 182 | From North Carolina | Registered: Apr 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic