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Old 03-15-2007, 12:37 PM   #1
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Need an LLMD in Houston, TX

I am new to the board and think I have Lyme. I have been tested negative by my PCP, but I continue to be sick after seeing many doctors (I think I'm at 15 now) and no one can tell me what's wrong. I did have a tick bite several years ago. Does anyone know whom I could see in the Houston area? If not, at least what kind of doc should I see? I have seen several neurologists, a neuroopthamologist, an internist, and a gyne. Thanks so much!

 
Old 03-15-2007, 02:35 PM   #2
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Re: Need an LLMD in Houston, TX

Hi Lizzie, welcome to the board!

How long have you been sick? I am sorry you have seen so many doctors. What symptoms are you having? 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

When Lyme disease is a possibility, it is very important to see a knowledge- 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 Many doctors do not understand Lyme and treat with outdated protocols.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. It is estimated that 60% of 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.

It is best to see a Lyme knowledgeable doctor. They may have different specialties but it is best to see someone recommended by a Lyme patient. The majority of the medical community is ignorant about these diseases. Often, infectious disease doctors are the worst to see.

I do not know of any Lyme doctors in Texas who come highly recommended. The closest one that I know of is Dr. Charles Crist in Springfield, MO. I am not sure how aggressively he treats, but it may be a place to start.

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. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

 
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Old 03-15-2007, 07:08 PM   #3
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hanelo4 HB User
Re: Need an LLMD in Houston, TX

Quote:
Originally Posted by lizzie518 View Post
I am new to the board and think I have Lyme. I have been tested negative by my PCP, but I continue to be sick after seeing many doctors (I think I'm at 15 now) and no one can tell me what's wrong. I did have a tick bite several years ago. Does anyone know whom I could see in the Houston area? If not, at least what kind of doc should I see? I have seen several neurologists, a neuroopthamologist, an internist, and a gyne. Thanks so much!
Hi Lizzie,

I live in Louisiana and there is a knowlegeable doctor here that I have seen. He is awesome. His office is in Pineville, Louisiana and his name is Dr. Jonathan Forester. If you ****** his name, you will find all of his information. Louisiana may be closer for you.

Chantel

 
Old 03-16-2007, 07:02 AM   #4
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Re: Need an LLMD in Houston, TX

Hi Chantel. Did this doctor test you for all the co-infections and use IgeneX Lab? What meds are you taking?

I have heard that he does not treat aggressively enough, so I suggest doing some research on treatment dosages.

 
Old 03-16-2007, 09:38 AM   #5
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lizzie518 HB User
Re: Need an LLMD in Houston, TX

Thank you for the speedy reply! I have been sick for approximately 7 months, though I was feeling more tired than usual sometimes before that. I was bitten by a tick about 2 years ago, but had no idea about lyme disease until I started having all of these unexplainable symptoms. I started out having leaking bladder, then tingling in my feet and hands, then extreme fatigue, then headaches, then facial twitching that goes on for hours, horrible pain in my hands, stabbing pains in my legs, and finally and most recently nystagmus adn sometimes double vision in my eyes. My symptoms seem to sometimes remit, but then return with a vengence. I've been tested for everything under the sun. They really thought I had MS for a while, but MRIs, spinal taps and blood work continue to look negative. The only positive findings I have had are a measurable nystagmus and hyperdeviation that has developed in my eyes in the last month, and positive for chronic or recurrent epstein-barr. My calcium was somewhat high, so they checked out my thyroid and para thyroid, but they came out OK. My first neurologist wrote me off as anxious and sent me to a psychiatrist when nothing really turned up. This was maddening because I've never in my life been an anxious person until all of this started happenning. Now I lay awake in the early morning crying over not knowing what is wrong with me. I feel like I am boxing against ghosts. We tried to get into the Mayo clinic to get me evaluated, but they turned down my case because I had already had too many tests. Thank you again for your reply and for letting me vent. This is the first time I have ever posted to any forum or message board.
[QUOTE=ticker;2860636]Hi Lizzie, welcome to the board!

 
Old 03-16-2007, 09:55 AM   #6
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Re: Need an LLMD in Houston, TX

Also - The Lyme test they did on me was something they kept referring to as my lyme titers. If they are negative, does this neccessarily rule out lyme? I will get the book you recommended, but in the mean time, can you tell me what you know? I can't tell you how I appreciate your time.

 
Old 03-16-2007, 01:51 PM   #7
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Re: Need an LLMD in Houston, TX

Hi Lizzie. I am sorry you have been through so much. This is a great place for support and there are a lot of informative posts you can read.

I get so infuriated with doctors who when they cannot find out what is wrong blame the patient!

I loved your analogy--like boxing with ghosts. You have every reason to be upset. Knowing that something is very wrong and not being able to get answers is very scary. I agree that you should consider Lyme disease a possibility. So many people who have Lyme saw several doctors before getting diagnosed.

No test for Lyme is completely reliable, and results can vary by lab. It is my understanding that the titer or ELISA is the least reliable, and the one most doctors run first.

It is very important to see a knowledgeable doctor and get tested by a Lyme lab such as IgeneX. There are not many knowledgeable Lyme doctors, and many people need to travel to see one. Some doctors will spread out appointments somewhat for those who have to travel.

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

 
Old 03-18-2007, 12:08 AM   #8
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hanelo4 HB User
Re: Need an LLMD in Houston, TX

Quote:
Originally Posted by ticker View Post
Hi Chantel. Did this doctor test you for all the co-infections and use IgeneX Lab? What meds are you taking?

I have heard that he does not treat aggressively enough, so I suggest doing some research on treatment dosages.
Yes, he tested for co-infections and also used Igenix lab in california. I had to pay $190.00 up front! LOL. I didn';t get my results back yet so I am not currently on any meds.

I'm not sure who said he doesn't treat aggresively because he does. He knows everything there is to know about Lyme. He had it himself. He is good friends with Dr. Crist(sp?) and follows his protocol. He's an awesome doctor.

Chantel

 
Old 03-18-2007, 12:13 AM   #9
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Re: Need an LLMD in Houston, TX

Quote:
Originally Posted by lizzie518 View Post
Also - The Lyme test they did on me was something they kept referring to as my lyme titers. If they are negative, does this neccessarily rule out lyme? I will get the book you recommended, but in the mean time, can you tell me what you know? I can't tell you how I appreciate your time.
Lizzie,

I just want you to know that the doctor I saw in Pineville, Louisiana is VERY reliable. He knows everything there is to know about Lyme. He had it himself. He treats aggresively and also uses the Western Blot and Igenix lab. He is the first doctor I've ever been to that actually listend to me.

Chantel

 
Old 03-18-2007, 08:17 AM   #10
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Re: Need an LLMD in Houston, TX

Hi Chantel. I am glad to hear that he testd you for all the co-infections through IgeneX and that he treats aggressively.

I know it is hard waiting for results, but you are on the way to getting the help you need. Let us know how your tests come out and what meds you are prescribed.
l

 
Old 03-18-2007, 09:36 AM   #11
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lizzie518 HB User
Re: Need an LLMD in Houston, TX

Thanks Chantal. It seems nuts that I'm here at one of the largest med centers in the country and there would be no llmds. I know there used to be a dr. Bill Harvey here. Does anyone know if he is still practicing? He was mentioned in the boards several years ago. Also, he worked at a place headed up by a dr. Pat Savato who is an internist who treats a lot of fibromyalgia. Has anyone heard of her?

 
Old 03-18-2007, 09:44 AM   #12
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Re: Need an LLMD in Houston, TX

Hi Lizzie. Dr. Harvey came highly recommended. Last I heard he moved to Colorado.

 
Old 03-18-2007, 05:57 PM   #13
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Re: Need an LLMD in Houston, TX

Quote:
Originally Posted by ticker View Post
Hi Chantel. I am glad to hear that he testd you for all the co-infections through IgeneX and that he treats aggressively.

I know it is hard waiting for results, but you are on the way to getting the help you need. Let us know how your tests come out and what meds you are prescribed.
l
Ticker

I certainly will let you all know how everything turns out. Thanks for all of your help

Chantel

 
Old 03-18-2007, 05:58 PM   #14
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hanelo4 HB User
Re: Need an LLMD in Houston, TX

Quote:
Originally Posted by lizzie518 View Post
Thanks Chantal. It seems nuts that I'm here at one of the largest med centers in the country and there would be no llmds. I know there used to be a dr. Bill Harvey here. Does anyone know if he is still practicing? He was mentioned in the boards several years ago. Also, he worked at a place headed up by a dr. Pat Savato who is an internist who treats a lot of fibromyalgia. Has anyone heard of her?
Lizzie

You're welcome hun. I hope you find someone to go to soon

Chantel

 
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