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    Old 06-30-2004, 01:45 PM   #1
    monicarenea
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    Desperate

    Hi! My name is Monica and I live in Houston, Texas. I am 34 years old and have been sick on and off for 7 years. My symptoms have included the following: hair loss, dry eyes and mouth, sore throat, swollen parotid glands, heart palpitations, muscle and joint pain, multiple miscarriages, and chronic yeast infections and fatigue. Some of the worse symptoms were numbness, tingling, short-term memory loss, and difficulty concentrating. I was misdiagnosed with Lupus, MS, and Sjogrens syndrome. Last year I was finally diagnosed with Lymes disease. I took doxycycline 100 mg daily for 4 months, but my symptoms remained. Now I'm on doxycycline 100 mg twice a day, and transfer factor three times a day. My doctor tells me I'll be on these medications for 5 to 6 months. Based on my symptoms I think I'm in the late stage of the disease. Any suggestions for other or additional treatments??

     
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    Old 06-30-2004, 02:10 PM   #2
    ticker
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    Re: Desperate

    Hi monicarenea. It is terrible that you have been through so much

    100 mg of Doxy or even 200 mg of Doxy daily is not strong enough for Lyme. I believe the recommended dose for Lyme is 300-600 mg daily. Six months of treatment is not long enough if you have been sick for seven years. Lyme disease needs continuous, aggressive treatment.

    It is very important to see a knowledgable doctor. Many doctors follow outdated treatment protocols and undertreat. Untreated or undertreated Lyme can be serious. Besides Lyme disease, ticks can also transmit several co-infections--Babesiosis, Ehrlcihiosis (HME & HGE), Bartonella, and Mycoplasma. It is important to be tested for these because many people who have Lyme are co-infected. Were you ever tested for these?

    There are not many Lyme doctors in the country, but there is an excellent one in Houston.

    Hang in there okay?

    Last edited by ticker; 07-01-2004 at 06:40 AM.

     
    Old 06-30-2004, 04:51 PM   #3
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    Re: Desperate

    hi there. i agree with ticker. i had lyme for 6 years before finding my llmd. i was on doxy for a little over a year, 300 mg. (100 mg 3 times a day) .
    since you are on the anti's, i would also suggest you take acidolphus every day as the anti's kill off the good bacteria in your system. you need to replace the good bacteria. this is most likely why you are having the yeast problems. eating yogurt with live cultures helps also. i still, even after being off the doxy now for over 2 years still can not control the thrush (yeast on tongue). it is completely thru my body now (candida) and unfortunately, i can't seem to do the right thing by staying away from sugars, yeasts etc. good luck and try to get to a good LLMD so you get the right dose of doxy.
    karen

     
    Old 06-30-2004, 06:46 PM   #4
    monicarenea
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    Re: Desperate

    Thanks For Your Fast Reply. I Did Test Positive For Mycoplasma Last Year And That Was Why I Was Initially Started On The Doxy. I Only Had One Positve Igm Band And No Positive Igg Bands. However Due To My Severe Symptoms My Doc Felt I Really Had The Lymes. I See Dr. Patricia Salvato In Houston. She Wants To Try The Oral Antibiotics For A While Before The Iv. I Feel 70% Better. I Have Energy And My Muscles Very Seldom Ache Now. My Parotid Glands Still Swell On And Off Daily And My Eyes Are Still Dry. I Had To See My Eye Doc Every 2 To 3 Weeks For The Last 6 Months. Now I Am At Every 3 Months. My Kids Will Soon Be Tested Since There Is A High Chance I Passed It To Them. I May Have Gotten The Disease From My Husband, Who Will Be Tested In 2 Weeks. My Doc Believes It Layed Dormant In My Body And Really Flared Up During My Last Pregnancy. I Just Pray That I Get Better. It Has Been An Emotional Rollercoaster The Last 3 Years.

     
    Old 07-01-2004, 06:44 AM   #5
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    Re: Desperate

    monicarenea, were you tested for the other co-infections also? I highly recommend speaking to your doctor about increasing the Doxy dose.

    Make sure you read the pharmacy sheet on the Doxy. Do not eat any dairy products two hours before or after the Doxy (this includes acidophilus) or it will not be absorbed properly. Do not lay down for at least 30-60 minutes after taking it or you could ulcerate your esophagus. This happened to me and it is very painful.

    I am sorry you family is dealing with so much. Do everything you can to get aggressive treatment.

     
    Old 07-05-2004, 03:10 PM   #6
    monicarenea
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    Re: Desperate

    Yesterday And Today For 1 Hour Each I Was Exposed To The Sun. Yesterday I Started Itching And Felt Stinging On My Arms. Today My Arms Felt Like They Were On Fire And My Skin Is A Little Red. There Is No Rash. I Take Doxycycline 300mg Daily. Could This Be A Result Of The Med. I Never Had This Problem Before When The Dose Was 100 To 200mg Daily. My Greatest Fear Of Course Is Lupus Since I Was Misdiagnosed With It 2 Years Ago And Know This Is A Common Symptom. Anyone Ever Had This Reaction With Thw Doxy Before?

     
    Old 07-05-2004, 07:38 PM   #7
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    Re: Desperate

    Hi I will get in contact with the woman that makes this cream and get you ingredient list and some more info on it. I never had the rash so I'm not positive how well it works but I have heard good thigns about it...

     
    Old 07-06-2004, 11:05 AM   #8
    Komondor
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    Re: Desperate

    monicarenea,
    Doxy and sun do not mix. You have to be careful as doxy makes your skin more sensitive to sun and you can burn easily. Sounds like this is what happened to you. You need to apply sunscreen before going outdoors. I would go for the highest spf you can find.

    My husband was burned badly last summer and it took a long time to heal. He even had to apply sunscreen on his hands, arms and face while driving to work as these areas were the last to heal because the sun was shining through the car windows...
    Stacey

     
    Old 07-06-2004, 04:34 PM   #9
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    Re: Desperate

    monicarenea, I forgot to mention in the Doxy tips to avoid the sun. You can get a severe burn even with sunscreen on. As was mentioned, use the highest number sunscreen you can and a hat if you have to be outside. This is a common side effect of Doxy.

     
    Old 07-07-2004, 06:56 PM   #10
    RobininHouston
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    Re: Desperate

    Monica, I live in Houston as well. Dr. Harvey is my dr. I did actually have the burning on my feet from the sun and doxy as well. I had never been on fire so much felt like my feet had spent the night in hell. I had to keep getting up and sticking them under the water. I too was taking 300mg of doxy. Anyway, how long have you been treated from Salvato? Just curious if you were happy with your treatment so far! Well, [ removed ]

    Last edited by moderator2; 07-09-2004 at 09:02 PM. Reason: Use this board anonymously, only - no emails.

     
    Old 07-22-2004, 08:14 PM   #11
    monicarenea
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    Re: Desperate

    Just Wondering If Anyone Else Has Experienced Significant Hair Loss With Lymes? Mine Seems To Occur Every 6 To 8 Weeks. I Also Was Treated For Mycoplasma And Heard That It Can Lead To Sjogren's. Anyone Ever Hear That. I Am On Doxy 300mg Daily. I Will Have More Labs Next Week And Then My Doc Will Decide Whether Or Not To Do Iv Antibiotics. My Parotid Glands Still Swell Up, Mouth Is Dry, Dry Eyes Are Better. Fatigue And Muscle Pain Better. I Appreciate Any Info I Can Get From Anyone. Thanks.

     
    Old 07-22-2004, 08:24 PM   #12
    monicarenea
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    Re: Desperate

    Hello Robin In Houston. I Have Been Seeing Dr. S. For Almost 2 Years. I Really Like Her. She Takes Time To Listen To My Symptoms. Right Now I Am On The Doxy 300mg Daily For 5 Months. She Also Has Me On Transfer Factor. We Will Find Out Later About Iv Antibiotics. Were Your Symptoms The Same As Mine? I Wish All This Would Just Go Away. I Have At Least One Thing Wrong With Me Everyday. Sometimes I Do Still Fear Sjogren's Or Lupus Diagnosis, Even Though Those Test Are Neg. And Only The Lymes Is Positve, Which Was A Relief When It Did Come Back. At Least Now I Know.

     
    Old 08-02-2004, 04:53 PM   #13
    monicarenea
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    Re: Desperate

    TICKER- I AM ON DOXY 200MG BID FOR 6 MONTHS. 2 MONTHS AGO I HAD ONLY ONE IGg BAND POSITIVE AND NOW NONE. I WAS EXPOSED TO MYCOPLASMA. I HAVE HAD LYMES FOR 7 YEARS (RECENTLY DIAGNOSED). I AM STILL VERY SYMPTOMATIC BUT MY DOC DOES NOT WANT TO DO IV ROCEPHIN YET. ANY SUGGESTIONS?

     
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