Neurological Symptoms and Tick Borne Disease Dx

[kturc]

I will try to make this as to the point as possible. My husband has had lymes disease and other tick borne diseases several times - he was hospitalized this past summer for two others - he was treated with IV antibiotics in hospital and then orally for a few wks after he came home. He has had symptoms that are unusual - he has had 80% hearing loss and gets extreme episodes of dizziness, often accompanied by nausea - he gets pins and needles sensations in his arms and legs - has spinal and neck pain, joint pain - Neurologist ruled out many things via MRI and MRA and finally just said the hearing loss and dizziness were caused by a virus 'probably'a nd it was related to his inner ear. I have a nagging feeling that this is related to tick borne diseases that were not treated for an appropriate amount of time. He also has A Fib which he has had for years but it also gets flare-ups which may be totally unrelated but now I wonder about all of this. My question is, would he benefit from having a lumbar puncture done to pin down what may be causing many of his neurological symptoms - and should he return to the neurologist or go to an infectious disease doctor?

[jerzegirl]

I have not yet been diagnosed with Lyme, although I am pretty sure I got it!  I have had hundreds of blood tests, everything negative, except the one lyme test (i've had 6) came back and showed one band for lyme.  I have what i think is severe neurological symptoms ~ tingling in head, face, arms, legs, fingers, toes; numbness in head, face, leg and arm, stabbing pains in head, uncontrollable and constant twitching and tremors in my hands and feet, frequent headaches, unbalance, confusion, memory loss, trouble speaking, sensitivity to sounds and light, dizziness.  My neurologist has me scheduled for a spinal tap wednesday, which i totally dread.  He told me this spinal tap would be able to determine if i have meningitis from lyme disease, as well as fully rule out MS.  I don't know what to do and I am tired of being in such pain and unable to function beyond work.  I have a dozen other symptoms that I deal with every day, but the neurological ones are the most scary.  I don't want permanent damage, like paralysis.  I have only had this for 5 months and it's taking a toll on me and my 13 year old daughter (i'm a single mom).  I wish you and your husband the best of luck and hope he gets relief soon.  Please post if he has had the spinal tap and if it could determine anything about lyme disease.  I don't want to go through this if it's not going to help me.  

[serverbounce]

You should also look into Candida and Candidiais.

[patsy10]

Same here.  I have been tested several times with negative results.  I have your symptoms and a lot more.  I even had the bullseye rash and have never been the same since.  If you see a lyme literate doctor you will get the proper testing (Igenex) and proper treatment if the doctor feel it is lyme.  I would skip the ID doctor and the neuro and go right to a llmd.

[kturc]

Yes, neuro lyme is what I am thinking too, should he go back to the neurologist or infectious disease dr? I think he still need IV antibiotics. I myself have fibromyalgia and suffer terrible from it with many symptoms that in fact have probably been caused by lymes - burning pain in legs and feet, crawling sensations on my skin, joint pain, and the list goes on. Each time I have been tested for lymes it comes up negative and I get no treatment.

[patsy10]

I personally would not have the lumbar puncture for reasons of tick-borne diseases.  It is unlikely to show lyme even if he has it.  I would however have an LP  to rule out other things like MS or other central nervous system problems/infections.  Just my opinion but I would think he still has neuro lyme.  I agree with what Carol said.

[Carol in PA]

For information about testing and diagnosis for other tick borne infections, LymeInfo dot net has this:
Lyme Disease co-infections:
http://www.lymeinfo.net/coinfections.html

I don't think lumbar puncture is used to diagnose these.
Carol

[kturc]

I am thinking that maybe the lumbar puncture would be more apt to pick up on the other tick borne diseases? He has had - don't mind my spelling - babesia and erhlichiosis and rickettsia pox. Would it be more apt to pick up these particular diseases/bacteria?

[Carol in PA]

If the Lyme bacteria infect the cranial nerves to the ears, you can get vertigo, tinnitus (ringing in the ears), and sometimes hearing loss.  If the doctor thought that the hearing loss and dizziness were "probably caused by a virus," then I think he didn't really know what was causing it, and it could very well be infection with Lyme.

Cardiac irregularities may be caused by low levels of magnesium within the cells.
The Lyme bacteria, a spirochete, invade the body's cells and use up the magnesium.   All of the enzyme processes in the cells rely on magnesium to work, so when that is depleted it causes many problems, including twitching, cramping, and parasthesias.
(Parasthesias are odd sensations, like bugs crawling on the skin.)
Low intracellular magnesium can also cause irritability, depression, anxiety, panic attacks, and mental health symptoms.

Because your husband has a history of Lyme Disease, this would factor in heavily with his present symptoms when looking for a diagnosis.
If an Infectious Disease doctor does diagnose him with Lyme, he is likely to give him three to four weeks of antibiotics, and then tell him that the infection is cleared, even if he still has symptoms.  This is the policy of the Infectious Disease Society of America, the IDSA.

The International Lyme and Associated Diseases Society, ILADS, has a policy of treating the infection until the symptoms have cleared.  This may entail long term antibiotics.

Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
Joseph J Burrascano, Jr., M.D.,  Updated September, 2005
http://www.ilads.org/burrascano_0905.html

There are some things your husband can do to help himself until you find a physician who is very experienced with diagnosing and treating Lyme.
Read the information by Dr. Burrascano, and note the supplements he advises.
Taking these supplements may ease some of the symptoms.
For example, taking magnesium may help the cardiac symptoms, and taking B vitamins may help the pins and needles sensations, which might be neuropathy.
Taking Omega-3's (pharmaceutical fish oil) will help to strengthen cell wall integrity and help reduce inflammation.  This may help reduce the joint and the back pain.

For help in finding a physician who can treat Lyme, LymeNet dot org has a flash discussion group which is helpful for newbies.
You can post a query on the medical questions forum.

Although a lumbar puncture may be helpful to diagnose some conditions, it is not a good diagnostic tool for Lyme Disease.
Since the Lyme bacteria burrows into the cells, it may not be present in large enough quantities in the cerebral spinal fluid to show up in a small sample.

Wishing you the best,
Carol

LymeNet dot org     http://flash.lymenet.org/scripts/ultimatebb.cgi?