Need help in NY

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NyLyme
New Member


Date Joined Jun 2008
Total Posts : 10
   Posted Today 8:27 PM (GMT -6)   
Hello,
 
I am hoping someone can help.  I have had lyme since April 2008 wasn't put on an abx until June 2008 when I was so bad I ended up in the ER..Elysa positive they gave me doxy 100 mg twice daily.  Western Blot was negative...got better for about 4 months then got sick again after a few more months and another western blot that was positive I was put on Doxy again 100 mg 2 x daily.  I did ok for a couple of months but still had extreme pain in the muscles of the leg..right shoulder pain and actually couldn't lift my arm over my head..still getting Pt for the shoulder.  Then I was put on Amox 875 mg 2 x daily for 30 days...ended July 13th...here I am again on Doxy 100 mg  x 2 daily for 30 days.  Doctors still in denial that this is lyme related had many test all negative which brings us back to Lyme.  I tried to contact a lyme doctor but, insurance won't pay for it so I'm struggling with ID doctors and general practice dr...I still suffer extreme muscle pain and I get shaking chills at times...headaches last for weeks then subside...anyone have any suggestions...does this get better...what can I do..how do you de-tox how much epson salt to you put in a bath...what other natural things can I do..take magneisum and a multi vitamiin multi mineral chewable vitaimin twice a day.  Tested negative for co-infections through Qwest and Lab Corp. I'm getting tired of the doctor game...

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted Today 8:41 PM (GMT -6)   
NyLyme,

Welcome to the forum!

It looks like your Doxy and Amoxy dose were both not high enough. Your Doxy dose should be at least 400mg and the Amoxy dose is usually around 3000mg a day. That may be why you are still feeling bad.

You can also have co-infections even if your test comes back negative. That can also stop you from getting better. Lyme doctors usually deal with co-infections first.

You said you found a Lyme doctor but they didn't take your insurance. Would you like information to try to find another one?

P.S.- I will bump up the detox thread for you. It tells you everything you need to know about detoxing.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 8/25/2009 9:01 AM (GMT -6)   
I stopped the antibiotics and switched to Chinese herbs. I went to Dr. Zhang in NYC. It has made such a difference!

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 8/25/2009 2:46 PM (GMT -6)   
do you know how long you had lyme before the diagnosis?
 
What are your symptoms when you get ill again after the doxy?

RAW VEGAN
Regular Member


Date Joined Jan 2009
Total Posts : 49
   Posted 8/25/2009 7:40 PM (GMT -6)   
May I ask where in NY? I am in NY now and may be able to help.

RV

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 8/25/2009 8:30 PM (GMT -6)   

Hi NyLyme, welcome to the board!

I am sorry you are so sick.  It sounds like you have not received agressive enough treatment and you have not been treated long enough.  The doses you have taken are not in the range for Lyme disease.

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.  Many doctors do not understand Lyme and treat with outdated protocols.  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.  To me some of your symptoms sound like Babesiosis.  Quest and LabCorp are not good labs for tick-borne disease testing.
 
If you need a doctor recommendation, you can email me at ko_@bellsouth.net  

You may know this already, but there are some important tips about taking Doxy.  Do not have any dairy, magnesium, or iron products within two hours of taking it 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 sunblock.  Some people get burned knuckles from the sun coming into the car when they are driving, so I advise you to be extremely careful.  Do not lay down for at least an hour after taking it, or you can ulcerate 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 at least two hours apart from the meds.  This helps to replace the good bacteria and prevent yeast overgrowth.  The best kind to get are refrigerated and have a high culture count.  Most health food stores have them. 

Are you aware of the Jarisch-Herxheimer Reaction (herx)?  Often when people who have Lyme take antibiotics, their symptoms get worse or they get new ones.  When the antibiotics kill the bacteria, toxins are released making them feel worse.  It can be scary when it happens, but it is a sign the antibiotics are working.  This is probably why you feel worse.   During treatment, it is important to document your symptoms daily.  One way to do this is to list the main symptoms you have 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 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses  at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.   He discusses antibiotics and doses starting on page 18.   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. Singleton M.D.

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


tickedoff
Regular Member


Date Joined Jun 2009
Total Posts : 56
   Posted 8/28/2009 7:45 PM (GMT -6)   
Hi NyLyme,

have a fabulous llmd in nyc...email me if that works for you...

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/28/2009 11:06 PM (GMT -6)   
tickedoff,

Your email is not set up yet. If you go to the control panel, you can set it up there.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

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