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woodswalker
Regular Member


Date Joined Oct 2008
Total Posts : 99
   Posted 11/8/2008 10:18 AM (GMT -6)   
I was started on doxycycline (200mg daily) 9/22/08 three days after being bit. Was on for 21 days. Off for one week - Still had symptoms so doctor put me back on doxycyline. This makes week 7 since I was bit. Still experiencing extreme tiredness, dizziness, mental confusion, joint and muscle aches. Doctor say that I should be symptom free and can't understand why I'm not -- sent me for metabolic panel, arthritis test and some other blood tests. He also wants to do a spinal tap and put me on Predizone.
I'm thinking it may be time to find another doctor.

I've done quite a lot of reading and realize that Lyme takes many forms but something is still not clear to me...

When I hear of people having symptoms for years is that because they were not diagnosed?
- Or can it still happen even after two courses of antibiotics started so soon after exposure?

The mental confusion and other symptoms is because of neurotoxins left over from the bacteria; right?
Does that runs its course naturally or is detoxing a good idea?
If so what kind of detoxing is recommended?

needshelp
Regular Member


Date Joined Aug 2008
Total Posts : 225
   Posted 11/8/2008 12:31 PM (GMT -6)   

woodswalker,

Most people with Lyme take high doses of doxy (300-500 mg/day).  You should not take any dairy products 2 hours before or after you take doxy as it will prevent absorption of the meds.  Also, it is pretty well know that steroids causes rapid growth of the Lyme bacteria....so if you doctor thinks you have Lyme you should NOT take prednizone. 

I'm pretty new to this disease as well.  You really need to read up on it as much as possible because most doctors aren't not very educated on the FACTS.  You also NEED to see a Lyme specialist (LLMD). 

Lyme is a very difficult disease to treat and many people have prolonged symptoms/infection because they are not quickly diagnosed.  Some people are quickly diagnosed but not treated appropriately (i.e.  antibiotic treatments are not long or strong enough). 

Have you been tested for Lyme through IgeneX? 

Hang in there,

Brad


Lindsay123
Regular Member


Date Joined Mar 2008
Total Posts : 34
   Posted 11/8/2008 12:54 PM (GMT -6)   
i was treated a week or so after beng bite for a few weeks. it wasn't enough a year or so later I actuallly convinced my dr to prescibe abx for lyme was on 400mg for a few months. stoped due to needing to for surgery. My jaw and knee pain came back shortly after wards wted tas prescibed cereabix (or something spelled sorta like that ) as a precausion after surgery.  finished it ans still ended up with a bacterial infection any way and I am ciprofloxian now. It made me herx. I acted really goofy like i traded some pain killers for temporary uses of soft fuzzy blankets (weird). Then i cried and laughed and my jaw started to really act up.   never herxed like this on doxy. I have to convince my dr to continue my treatment after this runs out. In a way am happy I am receiving some type of therapy under 2 years from being bite. But if your dr screws up early it makes thing difficult.  Maybe i can just pretend its heat exhuastion like my first dr said after i was ill and ripped off a tick. It so hot right now in November in ALberta (very tropical rolleyes )

woodswalker
Regular Member


Date Joined Oct 2008
Total Posts : 99
   Posted 11/8/2008 4:55 PM (GMT -6)   
Brad,
Thanks for your reply. I didn't know about not taking prednizone with Lyme.
Also, to answer your question, yes, I tested positive.

WW

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 11/8/2008 7:32 PM (GMT -6)   
woodswalker,

Lyme disease rule #1 DO NOT TAKE STEROIDS, it's like adding gas to a fire!!!!!!!!!!!

read this please

http://www.ilads.org/burrascano_0905.html

woodswalker
Regular Member


Date Joined Oct 2008
Total Posts : 99
   Posted 11/8/2008 10:31 PM (GMT -6)   
Thanks anoyed. I sent the file to my doctor... or should I say my former doctor...

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 11/9/2008 9:31 AM (GMT -6)   

Hi woodswalker, welcome to the board!

The dose of Doxy you are taking is not in the treatment range for Lyme disease.  The recommended dose is 300-600 mg daily with 400 mg daily often prescribed.  Twenty-one days of treatment is not long enougn.  From what I understand, an infection treated within two weeks of the bite needs a minimum treatment time of six weeks of the proper dose antibiotic.  I am not  a medical professional, but since you have not gotten the proper dose I believe you should be treated longer.

Are you aware of the tips about taking Doxy?  Do not have any dairy, iron, or magnesium products within two hours of taking the Doxy 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 any antibiotics, make sure you take high quality acidophilus capsules at least two hours apart from the Doxy.  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 healthfood stores have them. 

Why does your doctor want to do a spinal tap?  They show Lyme is less than 5% of cases.  I have never heard of a Lyme knowledgeable doctor ordering this test to test for Lyme.  People who have Lyme should not take steroids.  They can make symptoms much worse.  I recommend talking with your doctor about tapering down and stopping them.  You cannot stop them abruptly.  It does not sound like the doctor you are seeing is knowledgeable about Lyme.

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. No test is completely reliable, and results can vary by lab.  Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Have you been tested for these?

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 sicker.  It can be scary, but it is a sign the antibiotics are working.  Although it can vary individually, many people experience this at the beginning or change of treatment and every three to four weeks.  During treatment it is good to document your symptoms daily.  One way to do this is to list the 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.

If you need a doctor recommendation, you can email me at ko_@bellsouth.net  Your infection is still relatively early which is good.  Early infections are the easiest to cure.  Getting the proper treatment early may reduce the chance of long-term complications.  I cannot stress this enough.

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. I also recommend the book "Everything You Need To Know about Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton MD.  

Hang in there okay?


woodswalker
Regular Member


Date Joined Oct 2008
Total Posts : 99
   Posted 11/9/2008 10:11 AM (GMT -6)   
Thanks Ticker.
Luckily, I refused the prednizone simply because I have heard horror stories from non-Lyme patients. I'm glad I didn't follow the doctor's advise blindly!

maggiemoo
Regular Member


Date Joined Oct 2008
Total Posts : 56
   Posted 11/14/2008 11:23 AM (GMT -6)   
thanks for info, learn something new everyday
maggie
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