posted
Wondering if anyone has had the same symptoms. Ear pain especially in the car, sound sensitivity, double vision (diagnosed as convergence insufficiency), light sensitivity, jaw pain (diagnosed as TMJ),change in bowel function, slightly droopy lip on one side, some joint pain, some headaches. If so did you have positive Lyme tests?? Which treatments was used?
Posts: 11 | From Connecticut | Registered: Jun 2010
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Keebler
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- Welcome. Sorry you are dealing with this.
Many see such symptoms resolve with treatment and support measures. So, know that it is possible to get better.
* Do you have an ILADS-educated LLMD (lyme literate MD)?
* Have you been diagnosed - or do you suspect lyme or other tick-borne infection?
* Do you have a positive test? (Tests are often negative, though, even in the presence of active lyme). A LLMD will know how to assess you - in person.
EARS -
The ears really take a hit from lyme. And vision can jump or flicker from the inner ear being off kilter. Just look at the long list of "Vestibular Symptoms" and you'll see how the ears affect everything we do.
* Treating infection is vital but some of the Rx can be hard on ears. That is why liver support is so vital. Magnesium and Ginger Capsules help. LIver support helps.
More here - with the last link being specifically tailored for lyme patients:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I had a lot of these. Was pretty miserable from Feb 2010-April 2010. Went to numerous docs and actually had a Lyme elisa by my ENT (it was negative.)
Then went to an LLMD and got an Igenex western blot. It was lit up across the board in my IgM.
I'm now in 6th week of treatment. I still have symptoms, but am MUCH MUCH better.
-------------------- 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: 3139 | From Massachusetts | Registered: May 2010
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Keebler
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- This also explains the cranial nerve involvement connection to ears. And it's not always so much the ear alone but the brain is often swollen (encephalopathy) - and that intensifies everything.
posted
bcb1200 --What type of treatment have you been on for 6 weeks. We are waiting for the results of the western blot (ELISA was negative). I'm trying to find the best LLMD in our area (Southern CT).
Posts: 11 | From Connecticut | Registered: Jun 2010
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posted
bcb1200 --What type of treatment have you been on for 6 weeks? We are waiting for the results of the western blot (ELISA was negative). I'm trying to find the best LLMD in our area (Southern CT).
Posts: 11 | From Connecticut | Registered: Jun 2010
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Keebler
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- What LAB is doing your Western Blot? Is that both IgG and IgM?
Most labs don't do the test right but, whatever you've got waiting there to be determined is a starting point, at least.
===================
This is the major set of guidelines to consider. Most LLMDs know all that's included here, even if they have their own approach. There are many other links, articles and books but I'll start with just this one as the Self-Care section is good to become acquainted with regardless of what treatment protocol your LLMD chooses for your individual needs.
posted
A local hospital is doing the test. Our family MD ordered it. They drew the blood on Monday -- I don't know how long it will take to get the results.
Posts: 11 | From Connecticut | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Did you have a bulls eye rash, by chance? Many don't. But it is a distinguishing marker.
Well, at least the blood draw was early in the week. When it comes back, note the location of the testing. They often send it across the country. If so, it should have been shipped overnight delivery.
If there is a delay of more than 2 days from the draw date to the performance date, that can also raise questions. It can take longer to process results, though but the testing sample should be fresh and have been handled precisely.
Most labs don't do the test right (they don't test all the "bands" - but, whatever you've got waiting there to be determined is a starting point, at least. When that comes back, consider this:
Dr C's Western Blot explanation is discussed here:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
IGENEX - testing for Tick-Borne Infections -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by mom123: ...symptoms. Ear pain especially in the car, sound sensitivity, double vision (diagnosed as convergence insufficiency), light sensitivity, jaw pain (diagnosed as TMJ),change in bowel function, slightly droopy lip on one side, some joint pain, some headaches. If so did you have positive Lyme tests?
yes, dear mom123. i'd shout it, but my ears hurt. seriously.
Welcome to the supportive LymeNet community. Unfortunately, from what you wrote, it sounds like you have chronic Lyme disease or even more specifically, Lyme neuroborreliosis. But please note, i am NOT a medical professional, just another patient with chronic Lyme disease.
i have most of those sx today. Ear pain (esp. in the car & for 30 min. after) hyperaccusis, tinnitis, poor vision, visual perception changes, bumping into door jams in my own home, bumping into walls, chairs, corners of things, TMJ, assorted numb body parts, aching joints, muscle weakness, kidney pain, photosensitivity...
It'll be very helpful for you to start journaling or charting your symptoms asap. Your LLMD will use that info to tailor a treatment plan just for you.
Fortunately, i've had these severe symptoms before and marked my calendar to be ready for a big symptom flare Fri. Since getting silverware from the drawer inflicts severe ear pain today, i can guess my Lyme spirochetes will be right on time! Last month it hurt me to hear a plastic bag of nuts rustle...
I've had irritable bowel syndrome (IBS), just not today. Occasional headaches that are in one specific area or another show up now, too. And focal seizures, but i seem to be controlling them with more rest, less pushing myself to exhaustion.
I contracted Lyme disease in 1989, for sure. I am "CDC positive," which means "beyond the shadow of a doubt, EVERY doctor knows i had Lyme disease." That's because i had the bullseye EM rash + 3 months of what i termed "sleeping sickness" flu. One can certainly have LD without any positive test result, too.
The causal agent of the disease is a complex, stealth spirochete that prefers to live in scar tissues, muscle fiber, collagen, the bladder, the eye and the brain. It's not often "around" to be collected in a blood draw or spinal tap.
From your symptoms AND your location, i'd love to put $$$ on you having Lyme. I could use a sure win!
I do not mean to make light of your pain & discomfort. I wish NOT ONE more person would contract Lyme disease or its co-infections, but that's not the situation...
Keebler provided numerous great links & info above for you. Line up an appt with a LLMD asap then take your time to rest & read up on scientific findings from ILADS clinicians & researchers dedicated to treating seriously ill Lyme patients (regardless of pressure from conventional Western medical doctors & insurers to leave patients alone to suffer).
Please post here often so you can become more familiar with this complex disease and the members can assist you on your path to remission. All best wishes, Smile
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posted
Here are some more details about our problem.
Our history is ear pain (especially in the car) starting in ~summer of 2009. Loud noises can be unbearable. One ear doctor diagnosed TMJ in Sept 2009, got a bite plate from a TMJ Specialist. Was also told have a bit of hearing loss.
Double vision started upon reading in ~Feb 2010. Ended up getting surgery (bimedial resection) in Early April 2010. Surgeon kept saying expecting 100% positive outcome. Was told three weeks ago that surgery failed and we are back to where we started.
Now we have severe photophobia (wear sunglasses all day and night). Double vision from up close to 10 feet away. Can see single in distance. Have blurry vision up close (using 2+ reader, but sees double so it doesn't matter).
On Sunday just thought Lyme might be what we have. *Headaches *Double vision Blurry vision, Light sensitivity *Sound sensitivity, ear pain especially in car, some hearing loss * increased motion sickness * TMJ (Jaw pain) * Change in bowel function * Left side of lip droops slightly.
Have seen 4 eye doctors in past two weeks, no one has the answer, seeing a neuroopthamologist soon, but I think a Lyme Doctor is probably more important?????
Posts: 11 | From Connecticut | Registered: Jun 2010
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Keebler
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posted
- Yes, it is much more important to FIRST see an ILADS-educated LLMD. Your symptoms are classic for neuroborreliosis (neuro-lyme). PLEASE call first thing in the morning as it can take a while to get in.
For that surgery in April, were you given steroids?
In the meantime, if any other doctor suggests any of this:
AVOIDS STEROIDS.
AVOID LUMBAR PUNCTURE (Spinal Tap) and
avoid aspartame and MSG (Google for all the names they hide under). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Yes, Mom123, a LLMD is THE ONLY medical professional who can & will help you on your path to remission of chronic Lyme disease.
NO conventional Western medical doctor, PCP or "specialist" in the U.S. will be able to help you because they cannot find what they never heard of or prefer to believe doesn't exist.
Save your $$$, conserve gas, and rest at home instead of paying ANY non-LLMD. They cannot help you.
SO sorry to hear of the failed eye surgery. That is terrible! ALL elective surgeries should be reconsidered if it is even possible that the patient MAY have Lyme disease. The spirochetes are attracted to scar tissue and proliferate in surgery sites.
Lyme spirochetes have been found to invade and live in eyes, brains, fluid on the knee, etc.
Before i learned this, i had surgery that seemed helpful at first, but is right back to PAIN two yrs later.
Please look at Keebler's 4:25 pm post for links to the ILADS website and LDA website. You'll want to get oriented quickly as you await your appt with your new LLMD.
As Keebler suggested in her 4:40 pm post, please print Burrascano's 37-pg monograph (FREE!). I put my copy in a 3-hole binder and added my own dividers. You'll read, re-read, and highlight these ILADS Guidelines as you work to rid yourself of the parasites.
Please note that when one memember of a household has Lyme disease, it is recommended to have all members of the household clinically evaluated for Lyme, too.
Unfortunately, scientists have found the Lyme spirochetes in human urine, saliva, tears, breast milk, and semen, so one must be very cautious.
I can empathize with how overwhelmed you must feel. No one taught us this in 5th grade! As you look into Lyme, be sure you also remember to take breaks away from the medical drama. It is vital to keep Lyme patients from becoming overtired.
Please post here often so members can support you.
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Carol in PA
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quote:Originally posted by mom123: *Headaches *Double vision Blurry vision, Light sensitivity *Sound sensitivity, ear pain especially in car, some hearing loss * increased motion sickness * TMJ (Jaw pain) * Change in bowel function * Left side of lip droops slightly.
Some of these symptoms may be due to low magnesium. Light sensitivity, sound sensitivity, headaches, TMJ, motion sickness.
Lyme Disease does cause low magnesium in the muscle and nerve cells, causing all kinds of symptoms.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Carol in PA
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posted
Please look into taking magnesium. This is something you can do while you're waiting for test results and deciding on a doctor.
The Lyme bacteria uses up the magnesium in our cells. The cells use magnesium for all enzyme processes. Many of the Lyme Disease symptoms are due to low magnesium.
Don't buy magnesium oxide. It is cheap, but does not absorb well.
Foods high in magnesium include almonds, sunflower seeds, beans. Make beans a part of your diet...baked beans, bean burritoes, rice and beans, bean soup.
Eat almonds and sunflower seed for snacks.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Thanks everyone. We saw a LLMD on Thursday and will be starting IV Rocephin hopefully Friday. We found an interesting article last night -- it is really giving us hope that maybe this will be the answer to all our symptoms.
NEW YORK (Reuters Health) - Lyme disease infection can apparently affect the muscles that control eye movement, producing a condition called strabismus in which one eye is locked in a sideways-looking direction, according to French researchers. Dr. Arnaud Sauer and colleagues at Strasbourg University Hospital describe five such cases in the medical journal Clinical Infectious Diseases. The authors point out that Lyme disease is common in their area, which led them to suspect a connection in these patients who all had double vision because of paralysis of one of the eye muscles. All of the subjects had had a tick bite within the previous three months followed by a spreading "bull's eye" rash typical of Lyme disease. Four of them also suffered from joint pain that's another characteristic of the infection. All of the patients were put on antibiotic treatment. Between 2 weeks to 3 months after the start of treatment, the eye problems and other symptoms resolved in four of the subjects. The fifth patient required botulinum toxin injection to straighten the paralyzed eye. Sauer told Reuters Health that "for any acute paralytic strabismus, and more generally for any acute ocular manifestation, Lyme (disease) should be taken into account, especially in endemic areas." He added, "Early diagnosis allows the start of antibiotic treatment in order to prevent eventual chronic manifestations of Lyme disease." SOURCE: Clinical Infectious Diseases, March 15, 2009.
Posts: 11 | From Connecticut | Registered: Jun 2010
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