Topic: Duck at Yale for Vertigo: opinion is Migrane Associated Vertigo without the headache,
lymeHerx001
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I spent the whole day yeterday at the Yale medical center for hearing and balance.
They did VNG testing and nerve conduction testing to see if my ears were sending messages to my muscles correctlly.
Everything was normal.
Then I saw a neurologist and told him of the chronic lyme, herx's, vertigo, burning in my feet. He yawned at me and didnt say much. Then he swabed my hand and leg with alcohol and asked if it felt the same. (duh!)
Then he said that I probablly have a migrane without the headache and recommended calcium channel blockers!
The worst was the otologyst. He talked so down to me and when I said that I have chemical sensitivities and had to cover my memory foam containing mattress in plastic he said "did that help?" As if I were making it up. He said he couldnt do surgery and instead told me to do vestibular rehab therapy.
I cant believe that they call themselves professionals at yale? What a crock.
[ 02-17-2009, 01:46 AM: Message edited by: lymeHerx001 ]
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beachcomber
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Hah! So sorry for your experience. I wasted an entire day at Yale with the head of Lyme Disease research because my vertigo and balance were beyond bad. I was given a definitive diagnosis of Whipples Disease and told to see my gastroenterologist. I was also told I didn't have Lyme because I had already been treated for it. I walked in with positive Lyme labs, btw.
My LLMD just shook his head and asked how much it cost me to get that diagnosis.
If it is of any help to you, my ENT gave me some exercises for vertigo that really have helped me. Try the exercises if you can. I think they are online.
lymeHerx001
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What is Whipples Diesease
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treepatrol
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Whipple's disease (intestinal lipodystrophy) is the result of a rare bacterial infection that damages the lining of the small intestine and may involve other organs of the body.
This disease is caused by a bacterial infection. Typical symptoms include diarrhea, inflamed and painful joints, fever, and skin darkening. The diagnosis is based on the results of different biopsies. If left untreated, the disease is progressive and fatal. Antibiotics can eliminate the infection, but the disease can recur.
Whipple's disease affects mainly white men aged 30 to 60. It is caused by an infection with the organism Tropheryma whippelii. The infection usually involves the small intestine but can affect other organs, such as the heart, lung, brain, joints, and eye.
Symptoms
Symptoms of Whipple's disease include diarrhea, inflamed and painful joints, fever, and skin darkening. Severe malabsorption results in weight loss along with fatigue and weakness caused by anemia. Other common symptoms are abdominal pain, cough, and pain when breathing caused by inflammation of the membrane layers covering the lungs (pleura). Fluid may collect in the space between the pleural layers (a condition called pleural effusion--see Pleural Disorders: Pleural Effusion). The lymph nodes may become enlarged. People with Whipple's disease may develop heart murmurs. Confusion, memory loss, or uncontrolled eye movements indicate that the infection has spread to the brain. If left untreated, the disease is progressive and fatal.
Diagnosis and Treatment
A doctor can make the diagnosis of Whipple's disease when an endoscopic biopsy (in which a tissue sample is obtained through a flexible tube and examined microscopically) of the small intestine or a biopsy of an enlarged lymph node shows the bacteria.
Whipple's disease can be cured with antibiotics. Usually people are given ceftriaxone Some Trade Names ROCEPHIN initially by vein, followed by trimethoprim Some Trade Names PROLOPRIM TRIMPEX / sulfamethoxazole Some Trade Names GANTANOL taken orally for at least 12 months. Symptoms subside rapidly. Despite initial response to antibiotics, however, the disease can recur. http://www.merck.com/mmhe/sec09/ch125/ch125e.html
Have you ever had b12 shots???
They helped me.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
lymeHerx001
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very interesting, so if Im 29 or 61 I cant get it? Just kidding and try to be humorous about our suffering.
The last thing I wanted to hear was that its all in my brain. They might as well have said that its all in my head!!!!!!!!!!
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Keebler
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-
Yale does not believe in lyme. I'm on the west coast and made the mistake (years ago) of having had a doctor who had graduated from Yale Medical School.
If you have a LLMD, see if you can get referral to a LL neurotologist (who is not at Yale). It was my neurotologist who actually suggested I be tested for lyme. Too bad the GP did that test wrong and it was another year before I learned more about testing. And too bad that no MD in my state would treat.
But there are some neurotologists who do know something about lyme. If they do not, they are of little good to lyme patients, though.
However, my ear doctor knew some about lyme but not enough - he still wanted to infuse steroids into my ears - he did not know how dangerous that is with lyme (unless hearing is at risk - steroids can save hearing, but abx must go along if lyme is part of the picture).
--
Pardon if this is a repeat. I can't remember everyone to whom I've offered this thread. Hope you find something here to help:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links
========
And after considering suggestions contained in that thread, sometimes, we just have to ride out the storm. Inner ear symptoms with lyme are very common and can be annoying or can be very severe.
If you are getting the best treatment for lyme, have considered coinfections and fungal infections, then seeing a LL neurotologist can help determine if there is something else going on.
Vestibular training can also help manage the symptoms, even if nothing showed up on the previous tests. However, I would not go to anyone who is not LL and has not been suggested by experts with lyme treatment.
I saw one PT for vestibular training and she was blown out of the water by my symptoms. She acted like she had seen an alien. So, being LL is essential to someone being able to assess or treat - even if it is something else.
Do you think that the Whipples thing could be their way of offering openended abx without admitting to Lyme and co-s?
I had a Yale hematologist/ID doc certain I was a Whipples case, too. He seemed very excited as he told me the trx was IV penicillin, followed by 1-2 years bactrim, with, I think, mino or doxy. This he had no trouble with. He even told me I might have to be on abx forever.
But when the test returned negative, he just shrugged. My syx were still the same, my gut had not improved, but now he said he couldn't treat me. He even said that he "wished he had the courage that the Lyme-treating doctors had" but he was a part of the system, and couldn't do anything for me until there was sufficient evidence.
I, of course, said I didn't have time for that. He looked at the clock. It seemed our appt was over.
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lymeHerx001
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Part of a corrupt over worked system. The last doctor was a joke. He was an otologyst and performed base skull surgery.
He talked so much down to me. I told him that I had a problem with my memory foam mattress and had to cover it in plastic. He said in a childish voice," well, did That HELLLLp???
No I didnt because im crazy is that what you wanna hear douche! Im so upset over this. My LLMD knew what to expect from my visit there.
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lymeHerx001
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I just worked out and now I have burning feet. And to think a neurologist at Yale had nothing to say about this and instead told me that I have a migrane.
Are you serious? Burning feet and chemical sensitivities and vertigo = migrane drugs = cure?
What? I must be missing something here...
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lymeHerx001
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I just worked out and now I have burning feet. And to think a neurologist at Yale had nothing to say about this and instead told me that I have a migrane.
Are you serious? Burning feet and chemical sensitivities and vertigo = migrane drugs = cure?
What? I must be missing something here...
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beachcomber
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nomore:
Nah, the MD just wanted me out of her clinic and admitted to the psych program. She had no intention of giving me any meds. I forgot to mention that I had already had a bowel biopsy and upper endoscopy and the test for Whipples had come back negative. Also, I am female. She wanted me to have the test again. My Gastro said fuggedaboudit.
My LLMD, who also happens to be an IDMD had warned me that I was going to the Ivory Tower when I said I wanted a second opinion. I only went because a friend convinced me that this doc was the authority on Lyme and she could get me an appointment.
I must say, the thought did occur to me that a Whipples diagnosis would have been a dream in terms of getting approval for IV meds. Fortunately (or not) I had indisputably positive Lyme test results & did get IV approval eventually.
posted
I saw vertigo on mystery diagnosis.. there is a condtion which can not be determined by test but it when vertigo happens a lot. there is no cure for it, but oddly ppl feel less vertigo while driving or moving object. It is caused from a change in pressure that your body never adjusted to. Ths women did all the research herself and then found it on line and got a hold of a doc. Sorry just thought this could be part .. sorry maybe this well help.. best wishes.. my point is that doc's dont have all the anwsers.. she was like this for over 3 years until she figured it out
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lymeHerx001
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hmm, change in pressure, like barometric pressure?
I feel like I need a special doctor that only thousands would bring.
Why cant we have something easy like cancer or high cholesterol?
The otologist said that he cant do anything for me other than vestibular rehab therapy.
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lymeHerx001
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^
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lymeHerx001
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chronic vertigo in the brain
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Are your feet burning in the morning, or is it worse in the morning? is it the soles of your feet? Could be Bartonella, which will also give you vertigo and severe problems in your brain.
Having any brain injury is terrifying, but if it is caused by a bacterial infection it needs to be addressed/treated, and aggressively.
It sounds like you have a LLMD. Did he/she recommend having a spect scan? MRI's will show masses and lesions in your brain. Spects will show inflamation, vasculitis and encephalitis.
Do a few searches here for spect scans. Ours (2 in this family have had it done) showed that more aggressive tx was needed, and that aggressive tx has much improved our lives.
I suffered from severe vertigo for a long time. Still happens, and I cannot skip my abx even one dose. Needed a cane not too long ago b/c my balance was awful, only way I could walk w/out falling over.
Sorry for the length here, I know how bad it can be. Best of luck.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
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lymeHerx001
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I tested negative for Bart 6 times.
They told me that if I had a spect scan that it would be abnormal and therefore useless. The MRI turned out negative.
Abx do help my head feel clearer after a herx but I cannot tolerate the doses I once could and I still herx even 5 years later.
I do still test positive for mycoplasma. I have tested positive 7 times.
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I also have mycoplasma. From what I have read it is extremely difficult to get rid of. Mycoplasma also affects the brain.
Who told you that a spect scan would be abnormal, and useless? It may help with ins. matters. We had ours done at Columbia Prebs. Hospital in NY. From what I have read on this site, it is supposed to be the best place for this test.
Bartonella should be a clinical dx.
Are you on abx at the moment?
In my opinion, if you are still herxing,there is still an infection, then you still need the abx.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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What I meant by Columbia being the best place refers to who is reading and interpreting the test.
They seemed knowledgeable about neuro lyme, and even mentioned it in my report.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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lymeHerx001
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My LLMD said it would be abnormal because of all my psych problems. I know that I have slight encephalopathy and reduced blood flow to areas of the brain because I have brain fog.
Unless the SPECT scan will help me get coverage for a therapist or get me SSD I dont want it.
I dont need more reasons that my brain is screwed up and this is preventing me from leading a full productive life earning a decent wage.
Im affraid to change jobs because I dont want to embarass myself with how foggy I get and how chemically sensitive I am.
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lymeHerx001
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q
[ 02-01-2009, 02:52 PM: Message edited by: lymeHerx001 ]
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lymeHerx001
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$I spent the whole day yeterday at the Yale medical center for hearing and balance.
They did VNG testing and nerve conduction testing to see if my ears were sending messages to my muscles correctlly.
Everything was normal.
Then I saw a neurologist and told him of the chronic lyme, herx's, vertigo, burning in my feet. He yawned at me and didnt say much. Then he swabed my hand and leg with alcohol and asked if it felt the same. (duh!)
Then he said that I probablly have a migrane without the headache and recommended calcium channel blockers!
The worst was the otologyst. He talked so down to me and when I said that I have chemical sensitivities and had to cover my memory foam containing mattress in plastic he said "did that help?" As if I were making it up. He said he couldnt do surgery and instead told me to do vestibular rehab therapy.
I cant believe that they call themselves professionals at yale? What a crock.
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lymeHerx001
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wheres nal?
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lymeHerx001
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I asked for brain surgery and they couldnt do it.
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I have constant vertigo as well and it is miserable. So far they have found that while I have orthostatic intolerance, a very low blood pressure, and low heart rate they really don't know the cause.
One neurologist also suggested that I was having migraines with no headaches but others have disagreed.
I hope you are able to get to the bottom of it. Please keep us posted!
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
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lymeHerx001
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Have you tried calcium channel blockers???
sounds like what I have capa. Its miserable isint it.
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