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  • New EARLY Lyme Diagnosis? NEED ADVICE

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    Old 07-10-2006, 11:10 AM   #1
    BusyKYmom's Avatar
    Join Date: Jul 2006
    Location: Louisville, KY
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    BusyKYmom HB User
    New EARLY Lyme Diagnosis? NEED ADVICE

    I am looking for some immediate advice on my husband's Lyme diagnosis. Hopefully we are still early enough to whip this thing!

    May 30, 2006: We were at our lake cabin and Bruce noticed a circular rash on his chest and he remembered pulling a small piece of a tick (he thinks?) from the same area a couple of weeks previous, maybe mid-May. The rash looked like ringworm to me and he had no other symptoms, so we decided to wait until we went home to Louisville on Sunday to have it checked out.

    June 4: Two doctors at Prompt Care confirmed that it looks like Lyme Disease. They told us that Bruce would probably feel worse before he felt better, but if Lyme disease is treated with antibiotics such as doxycycline, symptoms usually go away within 3 weeks of treatment

    June 9: Bruce was feeling pretty lousy, but went to see his regular doctor to let her confirm the diagnosis and the meds prescribed. She agreed, based on the bulls eye rash, and she confirmed that he was taking the right dose of Doxycycline -- 100 mg twice a day. She also ordered blood work to confirm the Lyme Disease.

    June 11: Bruce noticed two small patches of blisters to the left of the tick bite site, but no pain. We looked up Lyme Symptoms and learned that you can sometimes have rashes away from the tick bite so we just thought it was another symptom and ignored it.

    Bruce continued to feel bad -- weak, lethargic, achy joints, low grade fever, and then on June 12, he began to feel so nauseous he couldn't even keep water down. That night, we went to the ER to get him rehydrated and some phenergen to stop the nausea. We weren't sure if this symptom was from the Lyme or the strong antibiotics. We were released home the next morning and Bruce slept most of the day and seemed to begin improving from that point on.

    June 15: Bruce said that he felt good enough to make a planned trip to Des Moines for his Uncle's 80th birthday and it went surprisingly well. Other than a few brief bouts of nausea, Bruce seemed to be growing stronger each day, although he still tired easily. We flew back home on Sunday, June 18 and Bruce went to work on Monday.

    June 23: Bruce went back in to see our family doc for a follow-up and she told him the Lyme tests she did on 6/4 came back negative. Maybe we did them too early? She wants to repeat the test (this one came back later negative too). NEW SYMPTOM: Bruce tells her he is having trouble urinating. She recommends he see his urologist and makes an appt for July 5. Bruce think it's his prostate, but he's only 53 yrs old.

    June 25: Bruce has not been able to pee very well for several days and this weekend he started having some numbness around his groin area and the strange sensations (tingling, numbness, hypersensitivity) on the soles of his feet, so he finally let me take him into the ER on Sunday afternoon. A urinary catheter relieved 2,000 CC's (the nurses were amazed!) and he felt much better, but he still has the numbness, so they admitted him about 2am. After consulting with an infectious disease doc, a urologist, a neurologistm and the admitting Hospitalist doc, he had an MRI and tons of bloodwork that all came back clear, so we were very puzzled.

    June 26: Another MRI this morning, this time "with contrast" looking for any spinal cord issues. Results show only a very small area on his lower spine that may indicate some type of infection. A quick exam by the infectious disease doc resulted in her best guess being that he has shingles! He had the two small patches of rash on his side last week that is now scabbed over, and NO pain which is classic for shingles, so I am still suspicious we are dealing with Lyme. The doctor totally disagrees that Lyme has anything to do with this. She says after 3 weeks of Doxycycline, he is cured of Lyme. She thinks the shingles virus has traveled from the nerve to cause some inflammation in the spinal cord causing the numbness. She and the neurologist order a lumbar puncture (spinal tap) to check for any infections that may be causing the numbness.

    June 27: Preliminary results from spinal fluid show only two negative readings -- high protein (101) and high lymphocytes (79%), indicating some type of infection. Results of Lyme and other types of infections will not be back for a few days. They go ahead and start IVs with acyclivor (anti-viral) for the shingles, a steroid (Solu-medrol) for the swelling in the spinal, and a a bacterial antibiotic (Rocephin) for Lyme (or any other bacterial infection). And they admit they still do not believe this is the Lyme disease, but they are still guessing what is causing this.

    I do an internet search for CSF (for spinal fluid), lymphocytes and protein and come up with a website that lists Lyme first as a possible diagnosis (all others were types of meningitis and other diseases that don't fit his symptoms). This is very frustrating.

    June 28: It looks like they will let us go home after they teach him to self catheterize, and wait for the rest of the test results before we make any changes to his meds. The neurologist says that even if we can relieve the swelling in the spinal cord, it could take several weeks for the numbness to subside, but it SHOULD over time. Encouraging, but no promises.

    June 29: Still all test results are negative-- including the one for shingles! The only test we don't have back yet is Lyme and the doctor said it would be in today or Saturday and she would call us. (The lab is in Salt Lake City) So, basically we still don't have a diagnosis for the infection yet. The Infectious Disease doctor released us home on IV Rocephin (2gm) every 12 hours for 7 more days and a pill for Acyclivor (800mg) 4 times a day. Not sure why we are still on the Acyclivor given the test for viral infection was negative, but frankly I want to cover all bases too at this point. Pray that the doctors come up with an answer for all this so we can be sure we are on the right treatment plan.

    Bruce still can't feel to pee so he's doing in/out catheter every 4-6 hours. He's totally frustrated with it, but he's doing it and it's working. He tries to go by himself each time before he uses the catheter. Pray that the infection goes away and his feeling returns soon.

    July 6: We are so disappointed and frustrated. In our follow-up visit today, the Infectious Disease doctor told us all tests she had run had come back negative, including the one for Lyme, and that since Bruce is not improved after being on the Rocephin for 10 days, she does not believe there is an infection causing this. She said there is nothing more she can do. I did show her my Mayo Clinic recommendations that a person with Lyme who has neurologic symptoms should be on Rocephin for 14-28 days and she VERY RELUCTANTLY agreed to run them for 4 more days. She thinks it is a total waste, but she did it. She also called the neurologist and asked him to see us sooner (than our Aug appt) because the symptoms were no better and she believes it is neurologic. She said this is very serious and that we may even want to consider going to Mayo for evaluation.

    So, we did get in to see the neurologist about 2 hours later. From what I could tell by the plaques on his wall, he is actually a D.O. in Neurohealth. This was the doctor that our hospitalist neurologist referred us to for follow-up. He did a full-exam on Bruce and reviewed his records and MRI reports and .... threw up his hands too! Argh! He said this is transverse myelitis with no apparent cause. Transverse myelitis just means that a portion of the spinal cord is not functioning like it should. It also can mean the body's autoimmune system is causing his own cells to attack his body. He said all we can do is wait and watch. It could get better in weeks or months -- or years -- but probably it WOULD improve. He did say he was familiar with Lyme, and practiced for a while in the northeast, but did not seem to think it is related to what is happening to Bruce.

    I asked him then about possibly going to Mayo or Cleveland Clinic and he agreed that it could be a case they would see...and he would support us getting in there. I only mention these because they have websites on Lyme, although these doctors still are convinced that is not what is causing this!

    July 10: No real change -- Bruce still can't pee without catheterization, he finished his last of the 14 days of Rocephin (and I am terrified he still needs to be on it!). He feels pretty good overall, but still has the numbeness and tires easily. We are now working with our insurance company to determine where would be the best place for him to go next.

    We would appreciate any advice on best doctors/hospitals, with particular specialties in Lyme and Transverse Myelitis. Thanks in advance!

    Last edited by BusyKYmom; 07-10-2006 at 01:53 PM.

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    Old 07-10-2006, 12:22 PM   #2
    Join Date: Aug 2005
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    lymegirl HB User
    Re: New EARLY Lyme Diagnosis? NEED ADVICE

    Hi Busy KY mom

    Welcome to the board and I am sorry your husband is having such problems. I am sorry you have to be here but you will get lots of good information and support here. Your husband is lucky to have you researching this for him and keeping track of his symptoms.

    First I want to say that lyme tests are unreliable especially ones done by the hospital and the standard labs (Labcorp, Quest, etc). The best testing for Lyme is done by Igenex in Palo Alto, CA. You need a Dr to draw the blood and sign for the test. They have a website for further info. I would suggest going to a Lyme literate MD (LLMD) as they will diagnosis on clinical symptoms and are familar with Igenex and will tell you which tests to order. There are many tests available and it can be expensive. If you tell us where you live someone will make a recommendation for LLMD near you.

    Most Dr do not know much about lyme (even ID Drs who should know about the 2nd fastest growing infectous disease in the country but don't) and delaying treatment could be detrimental. I was dx with MS for 6 years before I knew about lyme. I can hardly walk. Don't wait even if your symptoms suddenly subside. When you research lyme you will learn how tricky this bacteria is. It can be dormant in your system for many years.

    The rash is a definite sign of lyme disease. I would make an appointment with a LLMD right away. Some are booking appointments weeks to months in advance.

    As far as your husband's symptoms, they could all be lyme related. Bladder problems are very common (I have them also). So is fatigue and testicular pain. 200mg a day of doxy is not a sufficient dose for lyme. Rocephrin is used for lyme but it sounds like the time was not long enough and I'm not sure about the dosage.

    Post where you are and we will direct you to a LLMD. I hope your husband gets treatment soon. Keep us posted.

    Old 07-10-2006, 12:31 PM   #3
    BusyKYmom's Avatar
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    Re: New EARLY Lyme Diagnosis? NEED ADVICE

    Thanks! We are in Louisville, KY, but willing to travel wherever we need to go to get the best doctor!

    Old 07-10-2006, 01:22 PM   #4
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    Re: New EARLY Lyme Diagnosis? NEED ADVICE

    Hi BusyKYmom, welcome to the board!

    I am sorry your husband has Lyme, but it is good he has been diagnosed. As was stated, a bullseye rash is a definite sign of Lyme. The rash alone merits treatment. If he still has the rash or if it comes back, it is good to get photos of it. Place something near it, like a coin or ruler, to give it size definition. Then you have evidence of it if needed.

    Below is a Lyme symptom list. You can have any number of symptoms.

    Unexplained fevers, sweats, chills, or flushing
    Unexplained weight change--loss or gain
    Fatigue, tiredness, poor stamina
    Unexplained hair loss
    Swollen glands
    Sore throat
    Testicular pain/pelvic pain
    Unexplained menstrual irregularity
    Unexplained milk production: breast pain
    Irritable bladder or bladder dysfunction
    Sexual dysfunction or loss of libido
    Upset stomach
    Change in bowel function-constipation, diarrhea
    Chest pain or rib soreness
    Shortness of breath, cough
    Heart palpitations, pulse skips, heart block
    Any history of a heart murmur or valve prolapse?
    Joint pain or swelling
    Stiffness of the joints, neck, or back
    Muscle pain or cramps
    Twitching of the face or other muscles
    Neck creeks and cracks, neck stiffness, neck pain
    Tingling, numbness, burning or stabbing sensations, shooting pains
    Facial paralysis (Bell's Palsy)
    Eyes/Vision: double, blurry, increased floaters, light sensitivity
    Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
    lncreased motion sickness, vertigo, poor balance
    Lightheadedness, wooziness
    Confusion, difficulty in thinking
    Difficulty with concentration, reading
    Forgetfulness, poor short term memory
    Disorientation: getting lost, going to wrong places
    Difficulty with speech or writing
    Mood swings, irritability, depression
    Disturbed sleep-too much, too little, early awakening
    Exaggerated symptoms or worse hangover from alcohol

    200 mg of Doxy daily is not strong enough for Lyme. I believe the recommended dose is 300-600 mg daily. Three weeks of treatment is never long enough for Lyme disease. From what I understand, an infection caught within two weeks of the bite should be treated with a minimum of six weeks of the proper dose antibiotic. The antibiotics kill the bacteria when they are reproducing, which is estimated at four weeks. Six weeks of treatment will cover one growth cycle. If symptoms are still present, further treatment is warranted. A longer infection needs longer treatment.

    A few tips about Doxy. Do not have any dairy, magnesium or iron products two hours before or after taking it or it will not be absorbed properly. It could be the Doxy making your husband nauseous. Have him eat something substantial and non-dairy before taking it. Make sure he drinks a full glass of water when he takes it. Have him avoid the sun. He can get a severe burn in minutes even when wearing sunscreen. Tell him not to lay down for at least an hour after taking it or he can ulcerate your esophagus. This is very painful!

    Whenever he takes any antibiotics, make sure he takes high-quality acidophilus capsules. They replace the good bacteria in the body and help to prevent yeast overgrowth (which men and women can both get). The best ones to get are refrigerated. Most healthfood stores have them. Tell him to wait at least two hours before or after taking the antibiotics to take the acidophilus.

    Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks. It is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.

    No Lyme test is completely reliable, and results can vary by lab. His rash merits treatment regardless of his test results. It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols.

    Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

    Usually places like the Mayo are not knowledgeable about tick-borne illnesses. I do not know of any Lyme doctors in KY. The closest doctor to you that I know of who comes highly recommend is Dr. Joseph Jemsek in Huntersville, NC.

    I hope your husband can see a Lyme doctor soon for an evaluation and to be tested for all the co-infections. Getting the proper treatment early in the infection may reduce the chance of long-term complications.

    Hang in there okay? Good help is available and you are not alone.

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