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lyme in maryland

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abanana07
Regular Member
Joined : Oct 2008
Posts : 47
Posted 10/14/2008 11:41 AM (GMT -8)
Hello! I am new to this forum. After a few months of feeling totally lousy (symptoms I thought indicated that I had thyroid issues) I found out I have lyme disease. I went to see an endocrinologist because of my symptoms and luckily he pointed out that they could be resulting from lyme's (and bloodwork confirmed it). I live in Montgomery county MD where there are a TON of deer and lyme disease is practically endemic. I don't remember a tick bite

The endocrinologist suggested I go to an "infectious disease" specialist. I found one on my plan - he was terrible! When I asked him if there was anything I should know about the antibiotics (doxy 100 2x a day) he said "stay out of the sun". Boy was I upset when I found out the hard way what a herx was and some other nasty side effects. Also, he started me on this for a month and then said I should go have more bloodwork done to test for babesiosis. Shouldn't I do that NOW instead of later??

I am scheduled to see a family physician (recommended to me by a family friend who had lyme disease and was treated by the same MD). But its not for a couple more weeks. I feel sick ALL THE TIME now and i am so tired I can hardly make it through a whole day of work. Should I be worried? What can I do in the meantime? What are the do's and don'ts that a good dr. would have told me from the beginning?

Thank you in advance for your consideration!!

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abanana07
Regular Member
Joined : Oct 2008
Posts : 47
Posted 10/14/2008 11:53 AM (GMT -8)
""Also, he started me on this for a month and then said I should go have more bloodwork done to test for babesiosis. Shouldn't I do that NOW instead of later??""

-sorry this was unclear - I meant that he said that I should finish the antibiotics and THEN go to have additional bloodwork done to see if I have any co-infections... I feel like that's something I should look into now, right?? I have no clue
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hezzer926
Regular Member
Joined : Sep 2008
Posts : 285
Posted 10/14/2008 12:14 PM (GMT -8)
When my LLMD tested me, she did babs and lyme at the same time.. I've read the co infections should be treated first.. Although, my llmd is treating the lyme first because i was already on doxy prior to coming to her...When I first started my doxy, I was so fatigued, I could hardly do anything... I had to build up to 400 mg...and just now, 6 weeks later, the fatigue has somewhat lifted.. it's just a painfully slow recovery.. it also depends on how long you had it before getting treatment.. in my case, it was about a month.. You should be taking 400 mg, not 200.. that's not enough to kill the lyme
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ticker
Veteran Member
Joined : Feb 2003
Posts : 9208
Posted 10/14/2008 1:17 PM (GMT -8)

Hi abanana07, welcome to the board!

Below is a Lyme symptom list.  You can have any combination 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
Headache
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
Tremor
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

It is very important to see a knowledgeable doctor.  Infectious disease are often not the best to see unless they specialize in tick-borne illnesses.  Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many people who have Lyme are co-infected.  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.  Have you been tested for these?

What are the initials of the doctor you will be seeing?  You can email me at ko_@bellsouth.net for doctor recommendations.

200 mg of Doxy is not strong enough for Lyme. I believe the recommended dose for Lyme is 300-600 mg daily.  There are some important tips to know about taking Doxy.  Do not have any dairy, iron, or magnesium products within two hours or it will not be absorbed properly.  If it makes you nauseous, eat something substantial and non-dairy before taking it.  Avoid the sun.  You can get a severe burn in minutes even when wearing sunscreen.  Do not lay down for at least an hour after taking it or you can ulcertate your esophagus.  This is very painful.  Drink a full glass of water when you take it for the same reason.  Whenever you take antibiotics, make sure you take high-quality acidophilus capsules at least two hours apart from the antibiotics.  The best ones to get are refrigerated and have a high culture count.  Most healthfood stores have them.

During treatment, it is important to document your symptoms daily.  One way to do this is to list the three main symptoms you have each day with 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.

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.  He also lists diet, supplement, and exercise recommendations.  I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singelton MD.

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saxmar
Veteran Member
Joined : Feb 2007
Posts : 670
Posted 10/14/2008 3:04 PM (GMT -8)
Check out Lymemd.com or .org. It is a Maryland based Lyme group that has Lyme Literate doctors affiliated with it. They have posted here. I will look for old emails that have more info on them.

saxmar
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Minx
Regular Member
Joined : Aug 2008
Posts : 62
Posted 10/14/2008 5:07 PM (GMT -8)
Hi Abanana07

I am in Maryland too. I just moved from Frederick County to Baltimore County. I just started treatment with the Lyme doc in Montgomery County that saxmar is talking about. I hope I am allowed to post his blog site. It is lymemd.blogspot.com
The info he writes about is interesting. I am finding there are so many different ideas on how to treat Lyme and co-infections. I think you just have to read a lot and educate yourself and pick someone you think best works with you. I personally feel most comfortable with a doc who has had this disease also. I find there is a lot of passion involved in the care I get when my caregiver has suffered from what I am experiencing be it Lyme or Interstitial Cystitis.

Wishing you well. Minx
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lfinva
Regular Member
Joined : Feb 2008
Posts : 160
Posted 10/15/2008 6:45 AM (GMT -8)
Also go to National Capital Lyme website, they have a good site, meetings and support group for areas in MD, VA and DC.
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abanana07
Regular Member
Joined : Oct 2008
Posts : 47
Posted 10/15/2008 7:41 AM (GMT -8)
Hi! Thank you all SO MUCH for the information! You are all awesome!

Unfortunately - last night was very bad. I have been pretty sick the last couple days and have thrown up a few times shortly after taking the antibiotics. I spoke with one of the Dr.'s i was in touch with and he told me to stop taking the Doxy immediately and come in to see him tomorrow. I really don't know what's going on but I feel 100x worse than I did before I started the antibiotics

**Minx: Thank you for listing that Dr.'s blog. I am actually VERY close to Germantown and would really like to see this doctor if at all possible. I couldn't find any contact information for him on that blog but I did put up a post asking for more informaiton. If you have any contact information for him and wouldn't mind sharing it with me - my email is annacosinski@gmail.com

Again, thank you all for your help and consideration.
All the best,

A
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marylandgirl
Regular Member
Joined : Oct 2008
Posts : 26
Posted 10/15/2008 8:15 AM (GMT -8)
I am interested in the doctor in Germantown, too. I am in Frederick, and would love to have someone so close to work with. Can you give his initials? I had a hard time getting any info. on his site, but he sounded knowledgable. Thanks for any input.
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abanana07
Regular Member
Joined : Oct 2008
Posts : 47
Posted 10/15/2008 8:18 AM (GMT -8)
Hi Maryland girl! I left a message on his blog with my phone number and email address for him or anyone at his office to give me information about how to make an appointment with him. If I hear anything I will let you know! My email is in the post above
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marylandgirl
Regular Member
Joined : Oct 2008
Posts : 26
Posted 10/15/2008 10:07 AM (GMT -8)
Thanks! I'll be checking back to see if you received any information. I appreciate you sharing any info!
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Minx
Regular Member
Joined : Aug 2008
Posts : 62
Posted 10/15/2008 10:09 AM (GMT -8)
Marylandgirl-

I have been in contact with Abanana07 via email. If you email her she can share the info I provided.

Minx
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