Patient Comments: Lyme Disease - Treatments

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How was your Lyme disease treated? Submit Your Comment

Comment from: hopeful, 55-64 Male (Patient) Published: October 29

I have had torticollis for 4 years now. I tried baclofen, Valium, and Artane. Currently I am on Roxicodone for the pain and Soma (helping less and less). I had cervical fusion for herniation. Bad move. Now it is more difficult to get injections due to metal plate in the neck. I have been going to pain management doctor every month for 2 years. I had acupuncture, physical therapy (made it worse), 3 neurologists, and today I'm going to the fourth. Last Botox did absolutely nothing but empty my wallet. Insurance won't cover! I am willing to try again out of desperation. I am starting to have difficulty swallowing. I feel pressure on my esophagus. I am a registered nurse and single parent and I need to work. Wish me luck. And good luck to all of you.

Comment from: Lauren, 45-54 Female (Patient) Published: October 07

After years of looking for an answer to my fatigue I was finally diagnosed with Lyme disease as well as H. pylori. I am at the stage where I have numbness and weakness in my arms, vision problems and chest tightness and heart palpitation. I was just put on 2 weeks of doxycycline 100 mg 2 times daily. After what I read I wonder if this is enough at this stage.

Comment from: K.C., 45-54 Female (Patient) Published: January 30

After 2 years of having eye sight problems and going to four different eye doctors, this summer I was bitten by a tick which gave me a bull's eye rash. After being treated with 3 weeks of antibiotics (doxycycline) I realized the vision problems I had had for 2 years had gone away. I went to my eye doctor who found that my eyesight had improved so much my prescription for glasses needed to be less than what I had. This is a prescription I have had for over 6 years. Here is the scary part: a few weeks off the oral doxycycline, my eyesight began to worsen. I called my eye doctor and the doctor said it was her opinion Lyme was in my nervous system. I went to an LLMD (Lyme literate medical doctor) and have been on IV for a month. My eyeglass prescription is too strong for me to wear for distance. Even my reading glasses are too strong a prescription. I just hope that when I go off the IV of antibiotics my sight doesn't retreat to the way it was. So wonderful to be able to see so well again.

Comment from: Mermaid, 55-64 Female (Patient) Published: November 06

I have had recurrent Lyme symptoms for nearly 20 years. Joint pain that resurfaces every 5 years or so but when doxycycline is prescribed, the pain/stiffness ends. What I didn't realize was that Lyme's can cause depression which I battle continually. In September I came down with a severe kidney infection and was put on doxycycline for 3 weeks along with 2 "super" shots as my doctor called them. The shock and "aha!" moment came when my distance vision returned after 10 years of needing glasses! I have been off the antibiotics now for 3 weeks and my distance vision has now "tanked" once again and severe joint pain has reared its ugly head along with burning eye pain and constant headaches.

Comment from: Novaknows, 55-64 Female (Patient) Published: December 31

I am a new Lyme patient. I have found that there are herbal treatments to be taken along with antibiotics. Cat's claw, Japanese knotweed, stephania, astragalus and Siberian ginseng are the most powerful helpers. It's a very horrible disease and you need to fight it using all the possible help available. I have found that very hot baths help the arthritis symptoms and the joint pain. The pain is beyond belief. Also exercising the area that hurts helps to bring oxygen into the area. Eat lots of yogurt while taking the antibiotics. I spray magnesium oil on the afflicted joints and muscles. Everything helps a small amount. Each Lyme sufferer must take charge of their own protocol in order to improve.

Comment from: NTB, 35-44 Female (Patient) Published: May 23

I had an endometrial biopsy for the first time today and it was some of the worst pain I have ever felt in my life. I literally screamed and almost cried. I am still in pain hours later.

Comment from: Poor man Jim, 45-54 Male (Patient) Published: March 22

Having witnessed all but the destruction of my wife by Lyme disease, not to mention my son and daughter contracting it as well, I am very aware of the symptoms. As soon as I saw a bull's eye rash on myself, I immediately began to watch for the symptoms. Since I did not seem to get the initial cold and flu-like symptoms I thought that I had dodged the bullet. While yet undiagnosed, I feel I did contract the disease. (My doctor said I did not exhibit enough symptoms to justify a test.) Currently I have so many, I cannot work. I am all but bed ridden, in particular, a weakness and laziness that leaves me exhausted and lying in bed about 18 hours out of 24 and unable to drive long distances, etc. I have gout in my feet and joint pain so bad at times I need crutches to walk to the bathroom. Since not being a doctor and unable to prescribe medicines, I have sought after alternate remedies. While I have not bought a blood zapper, yet, I do feel the colloidal silver and H2O2 (hydrogen peroxide) therapies have thus far improved my energy levels and health immensely.

Comment from: M Maguire, 45-54 Female (Patient) Published: June 25

I take doxycycline hyclate 100 mg as treatment for Lyme disease, twice a day for 21 days. IV at the emergency room (ER), not sure exactly what was it but the next day I 99% better. I also take Motrin 200 mg.

Lyme Disease from Tick Bites
Comment from: Joy, 35-44 Female (Caregiver) Published: March 14

I have a child with autism. I found out this week his underlying cause is Lyme. I gave it to him in the uterus. During pregnancy I had Bell's palsy and recovered three weeks after his birth. Before finding out about this diagnosis we did intravenous immunoglobulin (IVIG) and that kept things in remission. Thank goodness we did that. I am not a doctor but a mother of a child who spent thousands of dollars to get here. The symptoms you get is called PANDAS symptoms and when treated with antibiotics the inflammation and the symptoms go away, but the underlying cause remains, not to mention the damage you do to your gut bacteria leaving you open to the grasp of clostridia and streps that are highly antibiotic resistant. Please look into the chlorine dioxide protocol. The underlying cause is usually a symbiotic relationship between Lyme bacteria, parasites, viruses and metals. Kick all those things out and recover yourself. Please research and educate yourself. I do this in the hope that if I pass on the good it will bring good wishes to my child who we are trying to release from the grasp of Lyme.

Comment from: txrain63, 45-54 Female (Patient) Published: November 13

I was diagnosed in July 2012. I did not have any rash that I know of. I was bit by a tick when I was on vacation in Gettysburg, PA. I became very lethargic and my joints, especially my neck was hurting, some flu-like symptoms. My doctor checked EBV, Mono and Lymes. Lymes was positive. Tried 21-days of Doxy. Felt a little better, but then the bottom dropped out. Retested by PCR and positive. I am currently on 30-days of IV Rocephin. I am feeling better, but still have bad days, but from what I've read this is normal. It can take up to 6-months to feel better.

Comment from: lorie, 45-54 Female (Patient) Published: July 14

I had no rash that I knew of, or any known bite. My symptoms started with back pain, and then progressed to unusual swelling predominantly on the left side of my body. I felt very fatigued daily and sometimes had chills and low-grade fevers. I had ear pain, what I thought was thyroid nodules, eye pain, and facial pain. I thought my thyroid was the issue because I have Hashimoto's disease. Over the course of 2 days, my throat became swollen, veins were bulging on my left side, my head and arms were throbbing. I thought I was having a stroke or heart attack. I went to the acupuncturist and she relieved the pressure, which helped tremendously, but symptoms stilled lagged-like the joint pain, facial issues and incredible head scratching. My scalp feels sore and anything that touches it hurts. I've also lost quite a bit of hair.

Comment from: jhs7575aol, 55-64 Male (Patient) Published: January 22

I've had lyme disease 3 times over the last 20 years. Thank goodness my doctor in is very lyme disease literate and always caught it quick. The last time it came back it was from a gum infection I didn't even know I had. My nephew got it back from an infected wisdom tooth so I thought I should see a dentist as I was long overdue. I always take antibiotics for any dental work. My doctor has always said most doctors don't treat it aggressively or long enough.

Comment from: SusieRN, 45-54 Female (Patient) Published: October 30

I am an RN who had flu-like symptoms since 8/14. I have seen a GI doc, rheumatologist, hematologist, and yesterday saw an infectious disease doc who told me to discontinue antibiotics. My liver enzymes doubled and my hemoglobin dropped 2 points in 2 weeks. I asked my GI doc 1 month ago to do a PCR test, and although he never heard of it he ordered it: I was positive for ehrlichiosis. Thankfully I have a medical background and could correlate lab results and symptoms with different diseases. I am still on the journey to find an MD who knows lyme. Bless all of you in your journey: don't give up!

Comment from: PDXer, 65-74 Female (Patient) Published: August 27

Did not know I had a tick bite until the dinner-plate size bullseye appeared on my back. I felt sick but thought it was the Flu. My doctor called a prescription to a pharmacy (I was on a trip at the time). I got progressively worse and after two days was in a Fetal position and could not walk because of the pain when I stepped. I could barely make it home in the plane because of the pain. I had a Migraine for three weeks (I thought my head would explode) and was in bed for six weeks taking Antibiotics. At one point I had Arrhythmia (inflammation of heart sac) and about 50% of my hair fell out. I have some memory loss, Arthritis, and other inflammatory problems associated with Lyme disease. I do not take walks in the woods, and wear long pants, and long sleeves when outside. Lyme disease changed my life.

Comment from: Cathy, 45-54 Male (Caregiver) Published: July 24

My brother has Lyme disease. Went to 14 doctors and the last one gave him the antibiotic for Lyme but refused to acknowledge that my brother had Lyme. The drugs began to work, but the doctor would not renew the prescription. He has now turned to alternate treatment called the Rife machine. He has been taking the treatment for several months now and is doing really well. The person he gets the treatment from is a chiropractor in Niagara Falls. He almost died of Lyme but then discovered the rife and in a desperate attempt to get better tried it. He is now totally healed. Try this treatment. It is not inexpensive but it works.

Lyme Disease from Tick Bites
Comment from: hayduk, 35-44 Female (Patient) Published: September 22

I was diagnosed with Lyme disease in 2004. I did oral antibiotics. Then I had an IV chest line put in and two years of drip IVs of numerous antibiotics. It was to the point that I couldn't even get out of chair due to severe arthritis. Still to this day, I get tired all the time and have sharp shooting pain throughout my joints.

Comment from: Sharon tate, 25-34 Female (Patient) Published: April 19

I was very tired to I decided to get tested for Lyme. Call me weird, but I was sleeping up to 18 hours a day and had no other symptom. Lo and behold! I tested positive for Lyme disease. I am on Ceftin now and thankful that I caught this early.

Comment from: kittykat, Published: March 16

In 1972, I lost my mother to a rare illness. Little did I know that it was Lyme disease. I was 7 years old at the time and I remember my mother being in and out of the hospital on various occasions. She was bitten sometime in the summer and I lost her a few months later. I remember seeing her legs were covered with what resembled measles. There were these little red spots all over her legs. She needed to use a walker because her legs were not functioning well enough. My grandmother said that my mom died of a rare disease. I wish there were evidence of any research back in 1972, and had there been, my mom would still be here today. I am now 46 and my mother has been gone 38 years. I hope that with today's medical advancements, no other child will have to go through the sorrow of losing a parent.

Comment from: tammy, 35-44 Female (Patient) Published: March 20

I have been to seven doctors and have had several different diagnoses. I am very tired and have pain all over. Also, I have a mysterious looking rash on the back of my legs. Sometimes I can't get out of bed in the morning. I'm dizzy and have pain in my legs, back, head, ear and find it hard to lift my arms sometimes. I also have numbness in my hands and swelling in my legs and feet when I'm on them too long. All the doctors think I worry too much and nothing's wrong with me. I just want someone to help me

Comment from: Denby1957, 55-64 Female (Patient) Published: July 24

I was treated with Ceftin after getting a Lyme titer test. I had flu like symptoms, miraines, stiff neck (in which I could not lift my head) no rash, chronic fatigue, and generalized pain in my joints. It took over 6 weeks to start feeling better. That was over 18 years ago and I have arthritis and pain in my eyes from the effects of lyme disease.

Comment from: sad-sister, 45-54 Male (Caregiver) Published: May 30

My brother has frontal temporal dementia from Lymes that went undiagnosed for over 15 years. In NJ, the test is not accurate. He had 6 blood tests and 2 spinal taps. All were negative for Lymes. I knew he had it, so we sent his blood to IGENEX labs in California via a Lymes literate specialist in NJ, and got the Lymes diagnosis finally. But it was too late. Now, he is institutionalized from frontal temporal Lymes dementia.

Comment from: bimini, 55-64 Female (Patient) Published: May 23

I know I had been exposed to ticks this spring (2012) since I have picked them off of me. However, I never had red spots or really irritated skin. I am not sure how long it had been since I was bitten by a tick. My symptoms came on suddenly like the flu with fever, chills severe headache and back pain like I was in labor. I really got sick on a Sunday and went to my doctor on Tuesday. He put me on Doxycycline Hyclate 100 mg and today, Wednesday, my back pain is gone, headache is almost gone, fever is still breaking. I am thankful I should make a full recovery.

Comment from: jls, 45-54 Female (Patient) Published: December 08

I have been sick for 10 years and have been tested over and over again I've thought for a long time its lyme. When I first got sick I had rash small one on my lower leg then depression and really bad flu and couldn't move my arms without intense pain this was 2001 my doctors conclusion fibromyalgia. since it has been downhill it is now 2011 and i got a terrible rash like bulls eye on arm joint then on the left side of my face and i have had numbness up and down my body and joint pain 24/7 along with all kinds of weird other things. Can't find a doctor who will listen and take time to care. Help me please.

Comment from: cher, 55-64 Female (Patient) Published: July 20

In June I found a tick on my lower abdomen. It was the size of a poppy seed. Immediately the target site grew and itched terribly. Three weeks later I had lower back pain or kidney pain. My skin hurt on my thigh and back. Now I'm on doxycycline. I've been on it for 6 days and am improving daily. I still get what I call Lyme Attacks. Legs turn to water and I ache all over.

Lyme Disease from Tick Bites
Comment from: Ship Repair Sup., 45-54 Male (Patient) Published: May 19

I was treated with doxycyclin, B-12 and vitamin D. It has been 6 weeks now and I suffer with aching and numbness in both arms to whole body aches and both legs have numbness. I have low back aches more than what I was accustomed to with my scoliosis and I do not have or have had migraines in the back of my head since my seizure 9 weeks ago. I have minor headaches in my front lobe areas. I have had an EMG from my neck to my fingers and it was negative. My carpal tunnel in my right arm and arthritis in my hands have been aching more than usual lately. Retest for Lyme is in 2 weeks. I feel I still have it and pray God will remove it.

Comment from: ande1son, 7-12 Female (Caregiver) Published: March 23

My son was diagnosed with Lyme Meningitis in 2009 at the age of 11. First treated with 30 days of Doxycyclin. That failed and he was hospitalized again about a week after where he had the Picc Line inserted and required IV meds for 30 days. He still gets symptoms here and there such as the headaches, chest pain, and joint pain, but nothing like it was.

Comment from: Mazzarini, 45-54 Male (Patient) Published: February 16

Antibiotics have been unsuccessful. Currently suffer from memory loss, loss or right arm movement, severe pain throughout my body. I lose my balance, and have suffered from falls. Have frequent severe seizures requiring Emergency hospital visits via ambulance. I am depressed as a result of the pain and my inability to support my family. Sometimes I believe I would be better off dead, if it were not for my beautiful 2 young daughters. This is a horrible illness, and I pray for a treatment. Yet, without insurance I am losing this battle slowly and painfully.

Comment from: Bluebird, 65-74 Female (Patient) Published: January 27

I was bitten by 4 ticks in Indiana. Treated with Doxycillan within a week, and lasting for 7 weeks. When the antibiotic was discontinued, the symptoms returned. Doctor refused to continue antibiotic. Symptoms worsened. Changed doctors and was treated with another antibiotic for 6 months. Symptoms did not return. Still symptom free 19 months later.

Comment from: missnascar, 55-64 Female (Patient) Published: January 05

My Lyme disease was treated using Long-term antibiotic treatments for over 8 yrs.

Comment from: jeannie, 45-54 Female (Patient) Published: April 19

My Lyme Disease was treated with antibiotics for two years. I still sleep 2 to 3 days at a time and suffer with painful tendonitis and severe pain swelling in my right knee.

Lyme Disease from Tick Bites
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