long time illness, just diagnosed.

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New Member

Date Joined Jul 2009
Total Posts : 3
   Posted 7/3/2009 10:56 AM (GMT -7)   
So, for about four years now I've been having some pretty debilitating medical problems.
In the beginning I had started getting shakes, migraines and breathing problems. Only the latter was addressed at first, I went to a pulmonologist for what was supposedly asthma, this went away over time. Over the time this problem was being dealt with my shaking and migraines continued to get worse, they started to damage my balance and ultimately my high school experience. My school saw me as a liability and has said for 2 of my school years not to come back until my problems were sorted out, this is without giving me a tutor or any help, letting me teach myself the entire time and fall out of the social web.

Anyway, during that time I've been to specialists in nearly every field, I've gone for homeopathic treatments from 2 doctors as well as 2 or 3 neurologists, a cardiologist, therapists and psychiatrists, and more than I can possibly think of at the moment.

My doctors started calling my disease (which as far as I was concerned was disease x or whatever you'd like to call the unknown diagnosis) pseudo-seizures with migraines, these seizures have lasted from 20 mins to 4 hours. It causes me severe muscle pain, plus people just don't want to be around me when I'm showing these symptoms.

Doctors had attributed these symptoms to stress and anxiety, they put me on tons of different medications, for example, Paxil, Depakote, Abilify, Amitryptaline, Topamax, Clonopin, Imitrex, and the list goes on. None of these helped me at all. I also tried a treatment with a device called the radiac, an appliance that you connect to your pulse points to pick up and match the electrical impulses your body emits. I had heard from a doctor/friend of mine that even lymes could be eradicated using the radiac and proper vitamins. (I'm pretty skeptical about that.) Anyway, my point is that I've pretty much tried everything.

So, throughout the 4 years I was being treated for these debilitating problems the doctors never checked me for lymes, until about 2 months ago when one of my doctors suggested that I do a blood test for it. Positive. But at a low level, suggesting that I've had this for about the duration of my illnesses.

My symptoms are now these shakes that we've gotten used to calling seizures, nearly constant headaches, joint, muscle and bone aches, decreased balance, difficulty walking, I'm pretty much experiencing pain with whatever I do. It's been keeping me up at night, I'm lucky to get an hour or two in.

I went to the Doctors yesterday and he was saying that my course of tetracycline wasn't working and that I might need to get a pick line in my arm for a month for IV antibiotics.

My question is, do you guys have any suggestions to improve my health?

My resources seem momentarily drained.

Veteran Member

Date Joined Feb 2003
Total Posts : 9208
   Posted 7/3/2009 11:07 AM (GMT -7)   

Hi shibumison, welcome to the board!

I am very sorry you have been sick for so long and have missed out on high school.  That is really sad.  I am sorry you have Lyme disease, but it is good you have been diagnosed so you can get treated.  How old are you now?  Are your parents supportive?

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
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
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?

What dose of Tetracycline are you taking?  How long have you been taking it?  It can take some time to tell if a med is working.  Is your doctor planning on treating you with IV antibiotics for only one month?  This is not long enough treatment for someone who has been infected for years.  Where are you located?  You can email me at ko_@bellsouth.net for doctor recommendations.

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, but it is a good sign the antibiotics are working.  During treatment it is a good idea 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.

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.

New Member

Date Joined Jul 2009
Total Posts : 3
   Posted 7/3/2009 11:38 AM (GMT -7)   
Thank you for welcoming me here and offering me your condolences and advice. :)
I'm a 17 year old male, and yes my parents are supportive, although slightly aggravating about my health issues.

Now that I'm looking at the list of symptoms I realize I have quite a few more that I attributed to other factors.

I'll also have to look into a more lyme reputable lab, I had not been aware of these co-infections. Thank you, I will ask about them.

My Tetracycline is 100mgs taken twice daily, I've been taking them for about 2 months now. Yes, he was only planning on treating me with IV for a month, I will inquire more on that subject. I am in NY near where PA, NY and NJ meet.

I had never heard of herxs before this, my pain and sleeplessness have been getting worse since the course of antibiotics was started. I'm glad that this can mean they are working. I think I will start documenting my symptoms, the review sounds like a very good idea.

Thank you for the helpful reply.

Veteran Member

Date Joined Jan 2009
Total Posts : 914
   Posted 7/3/2009 1:35 PM (GMT -7)   
Shibumison, I'm so sorry you've been so sick but as Ticker said it's good that you've finally been diagnosed. She's given you great advice.

You've definitely come to the right place. This group has many knowledgeable and compassionate members.

After all you've been through you're finally on the road to recovery.

Good luck and let us know how you're doing.

Veteran Member

Date Joined Feb 2003
Total Posts : 9208
   Posted 7/3/2009 6:19 PM (GMT -7)   

Hi shibumison.   I am glad your parents are supportive.

From what I understand, some of the best Lyme doctors are in NY.  We don't post doctor names on the board, but feel free to email me or have your parents email for names. 

Sometimes Lyme doctors are booked.  If the one you want to see is booked, ask to be notified of any cancellations.  This can help you get in sooner.  In the meantime, you can call IgeneX and have them send you a test kit.  You take the kit to a doctor who is willing to draw the blood and send it in.  It typically takes about three weeks to get the test results.  The results will be reported to the doctor.  If you do this ahead of time, you may be able to have your test results for your appointment.   It may save a little time.

It does sound like you could be herxing.  How long have you been on the antibiotic?

New Member

Date Joined Jul 2009
Total Posts : 3
   Posted 7/4/2009 7:36 AM (GMT -7)   
Thanks for the suggestions, I think that I will call IgeneX.

That's good news about the doctors, I'll shoot you an email about that Ticker.

And thank you scorpio, I agree, it's much better than continuing going undiagnosed.

Oh and I've been on the antibiotic for about 2 months.

New Member

Date Joined Jul 2009
Total Posts : 13
   Posted 7/4/2009 8:35 AM (GMT -7)   
I am so sorry to hear what you have been going through.....but at least now you have a diagnosis and know what is going on.........best thing you can do now is research as much information as you can about your disease and treatment options. It took me 12 years to get a diagnosis of Lyme after being tested for MS, Lupus, Dr that wanted me to take anti anxiety and anti psychotic drugs.....guess he thought it was all in my head especially when I insisted he test me for lyme and I came up negative....that was 10 years ago most doctors know little to nothing about Lyme

Good wishes for your finding the best treatment and for full recovery
After 12 years of doctor shopping I finally got a diagnosis -Lyme- Good news and Bad news. at least the search has ended.....now to find a cure.
Brain fog, short attention span, no short term memory, head tremors, muscle aches, joint aches, chemical sensitivity, allergies, thyroid issues, adrenal exhaustion,
diabetes, elevated lead levels.
Tx: Some of what I am taking: Teasel, Para Herbs, Spiro-K, japanese knotweed, MMS, Heel Detox Kit

Post Edited (novie2) : 7/4/2009 9:38:02 AM (GMT-6)

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