New Lymie Needs HELP!!!

[uvamomb]

After many, many different diagnosis from pinched nerve to compressions, boney spurs, arthritis, fibro, chronic myofascial disease, dystonia, etc., I have now been diagnosed with LYME DISEASE.
Can someone please tell me - I'm seeing my PCP - how much stronger antiobiotics do you get? I'm on 500 mg of Azithromicin twice a day for four days, then off three, and back on, along with an antimalerial pill. I'm not having much results, though have been sick almost three years now.
Can anyone help me and also tell me what to expect. They say I'm chronic lyme, what can I expect with that.
Also, did the lyme cause all my other maladies?
Thank you so much - I'm so confused and so tired of being sick, in severe pain and tired!!!
Thank you,
Kathy

[lymebytes]

Hi Kathy. I am glad you have a diagnosis and a plan of action. I am sure you are relieved.

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 Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous, aggressive treatment. Is your PCP knowledgeable about Lyme?

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.

Were you tested for all of these? It sounds like you have Babesiosis if you are taking an anti-malarial. Babesiosis is similar to malaria. Which anti-malarial are you taking?

Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.

It is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and 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 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.

Hang in there okay? It can take time to recover, but with proper treatment you can get better.

[uvamomb]

Thank you, Lymebytes for the wonderful information. I was tested by Igenex, so feel secure there.

I will check into the two books you've recommended.

Are you chronic? If you're diagnosed as chronic does this mean you'll be on antibiotics for the rest of your life, or that you'll have breaks when you don't need them? I'd really appreciate the answers to these questions.

I hope you are doing well. Did it take you long to be diagnosed? to be cured?

I will say a prayer for you tonight, and thank you again soooo much for taking the time to answer me.
Hugs,
Kathy:) :)

[tangye5]

I have Babesia WA1, Babesia Microti, Borellia Burgdorferi, and Borellia Hermsli and on IV Rocephin 500mg., IV Zithromycin 250mg., IV Flaygy 250mg., Actigal 300mg. oral to help liver and INH 300mg. for Clamydial Pneumonia which seems to help with the cyclical sweats. It took 17 years to find out what I had and IGENEX Lab was the lab that came up with the results. An engorged tic that I took out of my head was totally dismissed back in 1989 by an army lab. They told me that Lyme disease was not in Texas. Read Lab 257 and anything about the Nazi Eric Traub that was engineering tics for bio war. He was using the Lone Star Tick from Texas on Plum Island. We have all been fed a bunch of lies. I have suffered through many surgeries and a brain rupture, have a high tumor necrosis, Epstein Bar off the charts, and Herpes pannel that directed my doctor to want me to try Valcyte which is $2,300 monthly. I have chronic Lyme and at this point I do not think there is a cure. If only they had given me oral doxicycline back in 1989 I might have had a chance. My spinal surgery last year was cervical and now I am in need of a lumbar fusion. I guess we just have to smell the roses and thank God I made it through the brain aneurysm rupture in 1999. Much luck to you and be sure you are doctoring with a Lyme Literate doctor.

[lymebytes]

Hi Kathy. It is good you were tested at IgeneX. Make sure you have been tested for all the co-infections, it is important.

I had four co-infections and Lyme disease. I am currently being treated for one type of Ehrlichiosis and Lyme. I believe that you can beat the disease, but it can take time. Long-term treatment is not unusual. If co-infections are present, symptoms of all infections can be worse.

Babesiosis can be tough in some cases. It seems most people need to be treated for at least four months or re-treatment is necessary. Longer treatment is not unusual.

Hang in there okay?

[lymebytes]

Hi tangye5. I am sorry you are dealing with so much, I know it is difficult.

Are you also taking Mepron (anti-malarial) for the Babesiosis? It is my understanding that antibiotics alone will not eradicate this. It can cause sweats.

I cannot understand doctors claiming Lyme disease does not exist in some states when it is located in every state. I was told the same thing. As if someone could "know" this!

I hope your treatment is going well.

[uvamomb]

Thank you both for your replies. Gosh, it really angers me that you were told lyme wasn't in Texas, Lymebytes. I'm so sorry. I do hope you are doing better. You sound like you have what I used to have - a very positive attitude. It's, as you know, frustrating when ti takes nearly three years to diagnose a person with what seems to FINALLy BE THE CORRECT DIAGNOSIS.
Tangye, I feel for you and hope that things will get much better for you soon. It' a lot to deal with.
Thanks again for being so open and accepting of a brand new LYMIE!
Have a great, pain free Tuesday,
Hugs and prayers from
Kathy

[lymebytes]

Hi Kathy. I am not in Texas, I am in Tennessee. Ticks don't cross our state line either!

It can be hard to have a positive attitude, but it really does help. I am sorry it took so long for you to get properly diagnosed.

It is also important to do everything you can to strengthen your immune system such as eat healthy, drink a lot of water, take appropriate supplements, exercise as much as possible, get enough rest.

Good luck with your treatment!