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Old 10-16-2007, 12:30 PM   #1
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New To Lyme Board but Not HealthBoards

In fall of 1995 I developed chronic hives for a year that all the docs I saw blew off as "stress and unknown origin. Then three years ago I fell apart. I received the DX by 3 different docs that I have FMS and CFS. Nothing is working for me and symptoms are still lingering - I have good days and I have bad days. I have only just started to investigate the possibilities of Lyme Disease from visiting another site. After looking at the symptom list here, I currently have or had all the symptoms BUT TWO listed.
~~~~~~~~~~~~~~~~~~~~~

Below is a Lyme Disease symptom list:

SYMPTOM CHECK LIST

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
~~~~~~~~~~~~~~~~~~~~~~~

Last year I had a Lyme test done but all it sad was NON REACTIVE and Quest Labs did the test. I just found out that Igenex is probably the way to go? I was also told of a doctor not too far from me that does treat Lyme and I see he was listed in the sticky at the top of this forum in the Doctor List.

Another thing that I have noticed is that when I take premed antibiotics (amoxicillin) prior to dental work (due to murmur that just developed when my other symptoms developed) is that I often feel much better for a day or two. I also took antibiotics for frequent bladder infections (doxycycline) and felt the same way as when I took the Amoxicillin.

Just wanted to say this seems like a great forum and I hope to get some answers soon. It is very hard living like this when I used to be very athletic and run many miles a day for exercise.

I think I am going to call the doctor I found not far from here and see where we go from there. Is there anything I should ask on the phone when I make that call?

 
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Old 10-16-2007, 12:52 PM   #2
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Re: New To Lyme Board but Not HealthBoards

Hi PollyGirl, welcome to the Lyme forum!

I am sorry you have been sick for so long. I know it is frustrating. I think you should consider Lyme as a possibility. Some people who have Lyme were first diagnosed with other diseases including CFS, Fibromyalgia, MS, and ALS.

It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. From what I understand, Quest is not a good lab for Lyme testing.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of 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.

Where are you located? Which doctor will you be seeing?

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 (on-line). 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.

I hope you get answers soon.

 
Old 10-16-2007, 01:40 PM   #3
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Re: New To Lyme Board but Not HealthBoards

Hi Ticker, thanks for the warm welcome.

I live in the NW region of Penna and found a different site that recommended Dr. Joseph Joseph in Hermitage, Pa. I also checked him out and see he is listed as a doctor in my network with insurance.

I plan on calling his office, as early as tomorrow. I am really tired of my life right now and would love to find just a small ray of hope that someone can properly diagnose me.

I am all open to suggestions.

Also, any thoughts on what I should ask on the phone when I make that call?

 
Old 10-16-2007, 06:58 PM   #4
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Re: New To Lyme Board but Not HealthBoards

There is another Lyme doctor in Hermitage who comes highly recommended: Dr. Chandra Swami.

I suggest asking if the doctor tests for co-infections.

Do not give up! You will find out what is wrong. Hang in there okay?

 
Old 10-17-2007, 04:12 AM   #5
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Re: New To Lyme Board but Not HealthBoards

Thanks again for helping!

 
Old 10-17-2007, 10:32 AM   #6
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Re: New To Lyme Board but Not HealthBoards

Ticker or anyone else, I see Dr. Joseph is an internist. I was wondering if he treats just lyme as a specialty or if I would need to see him now as my PCP who treats lyme (if that is what I have).

To this point, I do not know but suspect I have it. Wasn't sure if I could just go to him to get tested and they go from there OR if I needed to see him as my PCP.

 
Old 10-17-2007, 12:57 PM   #7
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Re: New To Lyme Board but Not HealthBoards

Hi Polly-

When you say your PCP treats it, does that mean with ILADS protocols? Many docs say they treat it but they treat for 28 days or 6 months and that is not long enough if you have had it for a while. Also, the dosage and the co-infections need to be considered. I hope your PCP really is Lyme Literate- that would be a real boon!

LLMDs come from all areas. I have seen listed:
Neuros, Internists, Rheum's etc. I think the usual way a doc becomes an LLMD is that they know and love someone who gets Lyme and they learn all about it to help that person becuase they realize that the docs are not going to help.

Best wishes- do reasearch as much as you can. definietly read Dr Burrascano's doc Ticker told you about to see if your PCP follows the protocols.

 
Old 10-17-2007, 02:25 PM   #8
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Re: New To Lyme Board but Not HealthBoards

Quote:
Originally Posted by zandvoort View Post
Hi Polly-

When you say your PCP treats it, does that mean with ILADS protocols? Many docs say they treat it but they treat for 28 days or 6 months and that is not long enough if you have had it for a while. Also, the dosage and the co-infections need to be considered. I hope your PCP really is Lyme Literate- that would be a real boon!

LLMDs come from all areas. I have seen listed:
Neuros, Internists, Rheum's etc. I think the usual way a doc becomes an LLMD is that they know and love someone who gets Lyme and they learn all about it to help that person becuase they realize that the docs are not going to help.

Best wishes- do reasearch as much as you can. definietly read Dr Burrascano's doc Ticker told you about to see if your PCP follows the protocols.
Sorry if I was not too clear

I have a PCP right now, who is an internist, but I have not discussed this with her. She is not treating me for CFS or FMS (even though she dx'ed me with FMS). I see another doctor for those.

I was wondering if I made an appt with this other doctor (Dr Joseph) in the future (who happens to be an internist too), if he would prefer me to see him as my primary care doctor that treats Lyme too OR if I can just see him for Lyme only and continue to see my regular PCP.

 
Old 10-17-2007, 02:28 PM   #9
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Re: New To Lyme Board but Not HealthBoards

Hi PollyGirl. Many Lyme doctors are internal medicine doctors or other specialties, but they have experience with treating Lyme.

Are you sure your doctor is Lyme knowledgeable? Is he familiar with the co-infections?

 
Old 10-18-2007, 04:42 AM   #10
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Re: New To Lyme Board but Not HealthBoards

Quote:
Originally Posted by ticker View Post
Are you sure your doctor is Lyme knowledgeable? Is he familiar with the co-infections?
I sure hope so, he is listed here in the Great Doctors and Clinics thread and someone from another Lyme site emailed me the names of 3 in or around my area. He was on that list of 3.

When I call his office to make an appt, I will ask about co-infections also.

 
Old 10-18-2007, 05:43 AM   #11
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Re: New To Lyme Board but Not HealthBoards

What are his initials?

 
Old 10-18-2007, 08:21 AM   #12
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Re: New To Lyme Board but Not HealthBoards

Quote:
Originally Posted by ticker View Post
What are his initials?
Post from above:
Quote:
Originally Posted by PollyGirl View Post
Hi Ticker, thanks for the warm welcome.

I live in the NW region of Penna and found a different site that recommended Dr. Joseph Joseph in Hermitage, Pa. I also checked him out and see he is listed as a doctor in my network with insurance.

I plan on calling his office, as early as tomorrow. I am really tired of my life right now and would love to find just a small ray of hope that someone can properly diagnose me.

I am all open to suggestions.

Also, any thoughts on what I should ask on the phone when I make that call?

 
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