New to LD and scared

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julliam
New Member


Date Joined Jul 2009
Total Posts : 1
   Posted 7/19/2009 9:39 PM (GMT -7)   
Hi everyone, I just found out this week that I tested positive for LD. I had been feeling tired, dealing with lots of headaches and finally some ataxia. My internist ran lots of blood tests such as thyroid, lupus, RA, and Lyme. I have never found any ticks or had a bullseye rash...so I was shocked to hear the diagnosis. She immediately started me on 200 mg of doxycycline a day for 3 weeks and said that she suspects that we caught it early based on my symptoms. Since I never found a tick, I don't know when this happened,so I feel afraid wondering if it is early or not. I do feel very lucky that the dr. ran the test immediately with no prompting from me. I have been taking the antibiotics for 3 days now and it feels like the symptoms are getting worse. I don't know if it's real or if I am just imagining it now that I have the diagnosis. I wonder if I should stick with my dr. or try to find a specialist. I don't want to be an alarmist, but I am very worried since I have 4 small children and I need every speck of energy I can get!

I am planning to see a holistic pharmasist as well, so that I can try to stay as healthy as possible during treatment. I would appreciate any advice from those who are more knowledgeable. Thank you and I'm so sorry that any of you are suffering from this!
Julliam

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/19/2009 10:01 PM (GMT -7)   
Hi Julliam,


Welcome to the forum!

I am so sorry you are dealing with this right now. Have you found a good Lyme Literate Medical Doctor yet? You should post your email so that members can tell you the contact info privately. You can email: stephanie@turnthecorner.org to find a Lyme Literate Doctor in your area. You can also go to: www.turnthecorner.org/bod.htm and ask for further sugestions.  

For more info, please read the topic at the top of the first page of this forum tittled "The Basics, Newbies check this out". It will help you get started learning about lyme.

There are also members here that go the natural route. I'm sure they will be able to help you out as
well.

Also, I don't think 3 weeks of antibiotics is long enough. The recommended treatment is at least 6 weeks.
I have Lyme Disease; Lyme Disease DOES NOT have ME!

**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 7/20/2009 7:32 AM (GMT -7)   
Welcome Julliam! I understand that you are scared. It is shocking I am sure to get a diagnosis that you weren't expecting. At least you had a Dr. who was bright enough to run all of the approriate tests for your symptoms. I agree with CajunGrl. More and more people are saying that 2-3 weeks of antibiotics are not sufficient. Some say, that you should stay on them for at least 2 months. How long did you have these symptoms before your diagnosis? If you can find an LLMD near you, I would suggest you see them. At least your Dr. started you on the Antibiotics, and that is a good thing.

gorbybelle
Regular Member


Date Joined May 2009
Total Posts : 147
   Posted 7/20/2009 9:20 AM (GMT -7)   
good to hear you are on antibiotics - I would reccommend you find an LLMD. - I can't help you locate one as I am in U.K. - there are plenty of positive stories of folks getting well from antibiotics [abx.] - especially if lyme is treated early - I can understand you being scared by this diagnosis - but it is treatable and obviously a doctor with plenty of knowledge about lyme - is the best place to go - it does sound like you have a good doctor - but with lyme I feel you need a 'specialist' - best wishes.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/20/2009 7:19 PM (GMT -7)   
Bumping this up for Juliam.
I have Lyme Disease; Lyme Disease DOES NOT have ME!

**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 7/20/2009 8:35 PM (GMT -7)   
Also they say it should be at least 400 to 600 mg of doxy. You need to see a LLMD Lyme literate MD in order to be treated properly. there is no way to tell if you have caught it early unless you knew when you were bitten, everyone is effected very differently.
Some of the crap these doctors say! What type of a doctor are you seeing? Do you know how lucky you are to have Lyme and to be blessed with a positive test?
Do you know what lab you were tested at.
And what type of test was performed?

You will become worse before you get better and 3 weeks will not be enough.
So dont let them (non LLMDs) tell you that it is enough. you will know when you still have symptoms that it is still there. unless you are the only person 3 weeks works for.
Forgive my cynicism.
And god bless your journey!!! -Veronica
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 7/20/2009 8:36 PM (GMT -7)   
Julliam, the good news is that you have found out why you are feeling bad and are getting treatment. Some people do not discover the cause for years and even decades. The reason you feel worse after starting abx is because your system is overwhelmed with the die off of the bacteria. It is normal and called a herxheimer reaction, or herx for short. It is a very good sign as it means your treatment is working. My first herx was the strongest and lasted for weeks.

3 weeks is not enough time to kill all the bacteria. When it is under attack, it goes into a cyst form which is difficult to erradicate. It can take months and even years to be completely cured. When you have recovered significantly you can take herbs instead of abx, if you prefer. The bacteria has a growth cycle of about 28 days, which is when you are most likely to herx. When you have had no symptoms for two or three months straight it is considered safe to quit treatment, with caution.

It is important to take very good care of your health. No sugar or alcohol or high glucose foods like white flour.

You should start reading about lyme disease. There is a lot of controversy concerning it's treatment although no doctor that has had it beyond the EM rash stage, believes it is cured in just 3 weeks of abx. One of the best books for understanding this controversy, so you can make an informed decision about your care, is CURE UNKNOWN which you can order online from Amazon.com. You will learn a lot from this forum. I am doing very well and I attribute my recovery (although I am still not cured) to the people on this site that are so generous with their information and support. Some people on here are seeing some of the best specialists for this disease in the world. Many of the doctors were themselves infected with lyme. They are called LLMD's or Lyme Literate Medical Doctors.

Good luck.

PS. I forgot to mention almost everyone is co infected with at least one other bacteria like bartonella or babesia. That is another good reason to see an LLMD. Many of these diseases escape notice because test results are not reliable. You need to go more by symptoms. In fact with bartonella the labs only test for 3 strains but there are over 30.

Post Edited (nefferdun) : 7/20/2009 9:40:58 PM (GMT-6)


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 7/21/2009 5:58 AM (GMT -7)   

Hi Julliam, welcome to the board!  I have not read the other replies yet, so I apologize if I repeat information already posted.

I am sorry you have Lyme, but it is good you have been diagnosed.  Many people are bitten by ticks without knowing it.  They are tiny, they inject a numbing agent so you cannot feel them on you, and they often go in hard-to-see places.  Although a bulls-eye rash is a definite sign of Lyme disease, only about 50% of people who have Lyme ever get a rash.

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. 

If you need a doctor recommendation, you can email me at ko_@bellsouth.net

200 mg of Doxy daily is not strong enough for Lyme.  I believe the recommended amount is 300-600 mg daily with 400 mg daily often prescribed.  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 sunscreen.  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.

Three weeks of treatment is not long enough even if your infection was diagnosed within two weeks of the bite.  From what I understand, six weeks of the proper dose antibiotic is the minimum treatment time for an infection caught within two weeks of the bite. The antibiotics kill the bacteria when they are reproducing which is estimated at four weeks.  Six weeks of treatment will cover one growth cycle.  If symptoms are still present, further treatment is warranted.  A longer infection needs longer treatment.  Early infections are the easiest to cure.  Getting the proper treatment now may reduce the chance of long-term complications.  

Be 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.

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