New Guy - Diagnosed Today - Got a few Questions

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General Specific
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/30/2009 6:11 PM (GMT -6)   
 
I got bit by a black-legged tick about a month ago.
 
I started feeling bad, joint pain, swolen glands, fatigue, weakness...
 
Recognized the symptoms as my girlfriend has Lyme.
 
Went to a doctor a week ago.  Took a blood test and started 200Mg Doxy/Day.  Test came back positive today.  (Nurse said "Trace Amounts" whatever that means).
 
So...today I have been reading. Now I have Questions:
 
I think I caught this early.  Obviously, I hope to knock this sucker out.  I doubt it is possible, everyone I know with Lyme suffer "flare-ups".
 
I read everywhere that if caught early, Lyme can be eradicated.  Is that just false hope?
 
Flare Ups:
 
What exactly is happening when someone who has completed their antibiotics has a Lyme "flare-up"?
Does this mean that bb has reactivated?
Are the symptoms of a flare up also herxing?
If someone has flare ups, does this mean they should be tested and receive further treatment or are flare ups just a reality?
(PS: I quess it could mean that there could be babesia or bartonella)
 
 
Herxing:
 
From what I gather, herxing is symptoms associated with the killing of bacteria.
Quackwatch tries to debunk herxing.
I feel like I have experienced this.  My symptoms seem to get worse after my dose of Doxy
 
 
Supplements:
(Huge topic, starter questions for now)
 
Burrascano recommends many vitamin supplements.  My Doc said not to take vitamins, as calcium and magnesium could inhibit the absorption of Doxy. 
Should I avoid vitamins while on Doxy?
 
I am feeling better. If the Doxy works, do I just wait to see what happens in the long term, or do i consider myself immune comprimised and begin treating myself as such?
 
If the Doxy doesn't work, is the next step to be tested for babesia or bartonella?
 
Cat's Claw: I am interested in trying this.  By taking this and herxing, are we killing bb bacteria, will just continue to do so as the colonies regrow?
 
Is the long-term treatment of Lyme best summarized as a daily struggle to support and maintain a healthy immune system and treat reoccurrances?
 

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/30/2009 8:11 PM (GMT -6)   
General Specific,

I just wanted to say Welcome To The Board!! I'm sure someone knowledgeable will be along to answer your questions.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 6/30/2009 8:11 PM (GMT -6)   
you ask alot of great questions.. alot of people on here will give you answers to all of them.. i'm so new to this, i'm still learning.. I'm in the process of ruling stuff out. and going from there.. i think the Bulleyes rash triggered me to do alot of tests, hopefully stuff that comes out ok.

when i saw the rash, i was talking doxy already, and have continued doxy, this is week 3 and i still feel bad.. i haven't really felt any better, most people will get better.. I think alot of my pain is lyme and anxiety/stress. not eating, being nervous about tests. ect.. all normal feelings i guess..

i was tested at quest for lyme, came back neg, then i took advice and took the Igenex test for bart and babesia. haven't got those results back yet....

i think taking some b12 and supplements are good for you to take, just take them in between your doxy intake.

i think with lyme you have to be proactive and take care of it soon. and rule stuff out to make sure lyme didn't stir up something else..

alot of people feel better after treatment and live normal lives. which is the plan.. and some struggle day to day.. it just depends on your body and how early you caught it...

you sound like your on the right path to 100% recovery, just don't let docs tell you no... you only know how you feel..

good luck to you and their are alot of helpful people on here

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 6/30/2009 8:13 PM (GMT -6)   

Hi General Specific, welcome to the board!

I am sorry you have Lyme, but it is good you recognized what it was.  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.  Have you been tested for these yet?

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.

You are right, early infections are the easiest to cure.  Getting the proper treatment now may reduce the chance of long-term complications.  You should be treated past the point of where you are symptom free.   Is your girlfriend being treated by a knowledgeable doctor?  If you need a doctor recommendation, you can email me at ko_@bellsouth.net

Regarding flare-ups, it is important that you get the proper treatment and that you are treated long enough.  Often, people are not treated aggressively enough or long enough initially and this can lead to a chronic infection.  From what I understand, an infection caught within two weeks of the bite should be treated with a minimum of six weeks of the proper dose antibiotic.  If symptoms are still present, further treatment is warranted.  A longer infection needs longer treatment.  With longer-term Lyme disease, most Lyme doctors will treat until the person is symptom free plus at least two months longer.  If co-infections are present, symptoms of each infection can be more severe.  

The Jarisch-Herxheimer Reaction (herx) occurs when someone who have Lyme takes antibiotics and their symptoms get worse.  When the antibiotics kill the bacteria, toxins are released making them feel worse.  It can be scary, but it is a good 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 important 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. 

Do everything you can to strengthen your immune system--eat healthy, drink a lot of water, exercise whenever possible, do things to detox, get enough rest,  take appropriate supplements etc.   Whenever you are on antibiotics, it is important to take high-quality acidophilus to replace the good bacteria and prevent yeast overgrowth.  The best ones to get are refrigerated and have a high culture count.  Most health food stores have them.  Wait at least two hours after taking the antibiotic to take the acidophilus.

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.

Good luck with your treatment.


Gizmo10
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 6/30/2009 10:14 PM (GMT -6)   
Herxing... sucks. After I had iv antibiotics, I would herx all the next day. Fevers, body pain. I'm sure taking it orally is not as bad, but its sure not a quack. Atleast when you are herxing... you know its killing off something!

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 7/1/2009 12:37 AM (GMT -6)   
Hey wouldnt we also have to take something like flagyl after doxy to really get it initially .
you know Doxy- a spirochete and L-form killer and
Flagyl -a cyst buster
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.


General Specific
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 7/1/2009 6:59 AM (GMT -6)   
Should I seriously persue a higher dose of the Doxy?

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 7/1/2009 5:38 PM (GMT -6)   
Yes, you should; however, many doctors follow the IDSA guidelines of 200 mg daily so you may have a hard time getting a higher dose unless you see a Lyme doctor.
 

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 7/1/2009 6:54 PM (GMT -6)   
WELCOME TO THE HOTEL CALIFORNIA................ YOU CAN CHECK OUT ANYTIME YOU WANT, BUT YOU CAN NEVER LEAVE!

Seriously, just kidding. Hopefully you are one of the people who caught this VERY early and antibiotics WILL cure you. You've come to the right place for help..... support... and ACCURATE lyme disease information.

So sorry you even have to be heare. Best of luck and health!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- I begin to fall apart, 08/01-LD +, 10/01- Igenex and CDC LD positive, 10/02-LD +, 11/03-LD +, 10/07-Bartonella +, CD57=3, koseri IgA +, Morganella +, motgani +,Rocky Mountain Spotted Fever +, Typhus +, Klebsiella pneumonia +, Proteus miabilis +, Citrobacter i IgA +, Hafnia alvai IgA +, NKC4 +, Interleukin 4 (IL4) +, IL8, Immunobillin (IM01) +. 
Rx's 06/15/09: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Lyrica 600, Levaquin 500, Diflucan, Invanz IV, possibly Gammaglobulin, Flagyl, HBOT  
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 7/2/2009 5:25 PM (GMT -6)   
Jeanleap, No you are NOT kidding. One can NEVER leave the Tick Hotel we are in. Some get better but never really get rid of it.
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties. [/color]

<FONT color=#0000ff>Outstare The Darkness--The Light Will Come!


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/2/2009 8:46 PM (GMT -6)   
JMHO, turer words were never said!!
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 7/8/2009 1:13 PM (GMT -6)   
Welcome! I don't know if any has already addressed this but the doxy smount you are on is not enough. Don't delay in finding a LLMD to treat you, it sounds like you caught it early so treat it aggressively! You can ask your Pharmacist about taking supps with Doxy (they'll know more than you doc) they should be able to tell you how far to space them apart. Good Luck,
KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/8/2009 7:55 PM (GMT -6)   
Welcome aboard, GS, but I am also sorry for the reason you are here. But if you do have lyme, then you are in the right place.

Anyone: I have herxing questions. Bacteria dying inside us sounds pretty toxic, and so I understand that the reason that our immune system kicks into high gear is because it views these toxics (dead bacteria) as threats.

What I do not understaand are many other of the herx symptoms -- I have seen them listed and the list includes worsening of lyme's symptoms. I do not understand why certain symptoms of lyme are worsened by the die off.

eg: If my main symptoms were pain, fatigue, and neuro, WHY exactly would these worsen during a herx? For example, I would imagine a herx to mean fevers, achiness (from the fevers), and general malaise, but WHY would it cause one to be more depressed, endure more pain, etc etc?
 
btw: my LLMD has me on 100 mg doxy, twice per day.  8 weeks of this was prescribed because I got another bite.  Do I need to be concerned that he is not on top of it? (or is this adequate to just cover my bases on the new bite)
 
We are awaiting lab reports to determine the best way to treat me.


Suspect TBI in 1972 (date corrected by Mother!) Attacked tonsils, pregnancy (miscarraige), appendix, heart (mitral valve prolapse), hypoglycemia, depression, chronic acute neck and back pain.  

Next suspect Mother's Day 2007.  Diagnosed w/ Lyme and Bart June 2009. (awaiting more test results)

In treatment for recurrent depression, anxiety, low thyroid.

Bit again 7/1/2009, began Doxy 200 mg /day

Post Edited (+Lyme) : 7/8/2009 8:08:08 PM (GMT-6)

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