Local NY Lyme stories

LYME Patient 1:

R. - Utica, NY

My short version would be: Never saw a tick or rash but symptoms were flu like sudden onset Labor day 1988. Diagnosed with Chronic Fatigue Immune Deficiency Syndrome in 1988 after failing to recover from what was labeled a sinus infection, struggled with numerous strange health issues for years until became bedridden in 2008. Saw multiple specialists, none could help. Sought an integrative MD who could would look at every body system, not just a specialist’s area of expertise. Found I had Late Stage Lyme Disease. With several years of treatment have improved my health although have residual damage due to being undiagnosed for many years. Found you MUST research and advocate for yourself as even though I now have a CDC/NYS positive Western Blot few local providers will acknowledge Lyme caused most of my ongoing health issues. R. - Utica, NY

LYME Patient 2:

J. - Boonville, NY (short version of #5)

I was raised on a farm, spent much of my childhood outdoors and experienced many ticks through my teenage years. In the 60's I experienced various undiagnosed symptoms of fatigue and allergy type head pains, TMJ and foot pains. In 2000 received shots for travel, tetanus, Hep, Rabies shots and came down with a 5 day fever, followed by shoulder and arm pains that continued to get worse. I was first diagnosed with MS but the symptoms did not match typical MS symptoms. After 5 different doctors, a Fort Drum Physician Assistant (PA) clinically diagnosed me with LYME. This was followed up with positive LYME tests by doctors in SE Pennsylvania in 2001. After the short term treatment, I relapsed while seeking another doctor. The symptoms have continued to vary and treatments have helped but a cure is still to be found. Today's symptoms include tinnitus, cold like head symptoms, right; facial, shoulder, neck, leg and foot burning pains.

I find the group encouraging and informative on new treatments and most of all, a help in keeping my sanity. When doctors tell you "you don't have LYME disease but I don't have a clue what your problem is" and you have a reasonable notion that you have have gotten infected from a biting insect, this is when other LYME patients can really help you through the trying times. As many LYME patients across the country know, when it comes to LYME disease and co-infections, doctors are struggling to make some sense of it all. Their education is not very helpful to them in finding solutions for their LYME patients that don't respond to short term antibiotics. It is hard for those doctors that are not seeing hundreds, if not thousands, of LYME patients each month, to appreciate the efforts and risks that LYME literate doctors take to help their patients. J. - Boonville, NY

LYME Patient 3:

I, - Frankfort, NY

On 8/11/15 , late in the evening I had a temperature of 104 degrees and my body hurt from head to toe. I went to the ER very early the next am as I knew something serious was going on. The Tylenol had not had any effect on the temperature nor the pain. In the process of having the EKG monitors placed one of the nurses asked me what the big read area was on my left side....I responded what big red area. It did not itch and I was not aware of its existence.. After a series of the usual ER Lab work and a lot of questioning I was diagnosed with cellulitis and placed on an antibiotic for 10 days..

While getting dressed I noticed the huge bulls eye on the left side. It measured about 4 x 6...The nurse looked at it, the dr. did not and they ordered the standard lyme test. I saw my primary care doctor a few days later and the they extended the antibiotic for several more days. The test results were not back. I was referred to a rheumatologist for future care. He did another Lyme about three weeks later which confirmed the lyme diagnosis. All my doctors seemed to feel I would be fine after my course of antibiotics...Well I was not well and have not been well since the tick bite.. I am extremely fatigued, have muscle and joint aches, aches in the back of my head, unusual pain in an area near the left side of my waist, lack of ability to concentrate and foggy headed at times. In a nutshell I would say I am a physical mess. The comments were "its all in your head", "you will get better in time", "You don't have lyme disease", "you look good" and so on. Everyday its a new challenge. If only the right people would hear our plea for help. We need to get the attention of those individuals with the power to get our government to expend funds to find a cure for this horrendous disease. There are hundreds of misdiagnosed people out there who need to be better educated about the effects of lyme disease and its co-infections. It is important that we advocate for ourselves, keep researching the areas we can and keep the faith so we can maintain our hope to feel better someday. I,- Frankfort, NY

LYME Patient 4:

P. - Frankfort, NY:

I was first diagnosed in August of 2012. And I thought, Okay - I’ll take this 30 days of doxycycline and be over it. I had been experiencing severe pain in my shoulders and hips since late June.

The antibiotics did nothing for me. I was now experiencing extreme fatigue and having trouble walking. I tried taking another antibiotic “Zithromax” but it caused bowel issues, so I stopped after taking it for 2weeks. I tried some herbal remedies but had the same digestive problem. My doctor recommended that I see a LYME doctor (LLMD). I made an appointment and felt comfortable that I’d be seeing a specialist.

I had monthly appointments with the LLMD for a year and a half, and took many different antibiotics and supplements, herbals and homeopathy. I changed my diet, cutting out sugar, flour, dairy, except for yogurt.

My knees were swollen, couldn’t bend my legs for about a year, loss the use of my arms for 3 months. I spent most of my time on the couch due to fatigue. In December 2013, I was feeling somewhat better, walking better, feeling less ill, and wanted to stop antibiotics and switch to an herbal protocol, along with supplements. I experienced some bouts of Lyme rage, a very strange and scary symptom, but found some treatments to help.

I experienced severe depersonalization / derealization that has lessened over time.

In April 2014, I started experiencing speech problems. At first a little skip in my speech, but it progressed to become very difficult to speak, forcing words out and grimacing.

Throughout this time I was also regularly seeing a Rheumatologist and neurologist who could find nothing wrong with me.

My speech started resolving in the fall of 2015, but I still have problems with it, especially if I am tired or trying to recall something.

Also, in the fall of 2015 my gait improved and I can walk normally now.

I continue with the herbal treatment, supplements, and diet and I continue to improve, its a subtle change. I still experience on & off fatigue and cognitive problems.

As a spiritual journey - Lyme puts me in the “now” - my memory is not good and I don’t think much about the future. It has also quelled my ego. I hold no interest for things I used to relate to as part of me, I am just “me.” P. - Frankfort, NY

LYME Patient 5:

J. - Boonville, NY:

My story starts at an early age around 1964, in southeast PA. I grew up on a farm, spending much time outdoors in the healthy air. Ticks were just part of being outdoors. At age 14, I noticed a rash on my thigh and was too embarrassed to show my parents. A year later I suffered from fatigue, sore throats and sinus pain and stuffiness. At 18 I was diagnosed with IBS, but the symptoms didn't really fit the description. Besides mid day tiredness, sinus allergy symptoms and Bowel Movement changes that occurred infrequently and usually lasted a week or so, I was a healthy strong and physically active child moving into adulthood.

I often felt like there was an underling issue but nothing that would stop me for long in my physical activities of work and play. In 1981, I was married and moved to Lewis county NY. I worked as an electrician, farmer, butcher, technician, builder, all at the same time. Most of the time I was doing very well health wise.

Then in 2000, my wife and I were planning a trip which required a Hep A shot, and we decided to also get our tetanus and rabies booster shots. The next day I had a high fever which lasted for 5 days. Doctors could not explain what was wrong. I recovered from this, only to have a stabbing pain appear in my left shoulder a few weeks later. By the afternoon, it had moved to my other shoulder and continued into my arm and leg. This eventually drove me to the doctors, who had many guesses but were without an answer.

Some veterinaries who have gotten Tetanus shots have developed LYME symptoms. It seems that the shots cause the immune system to over react or causes the LYME to get ahead of the immune system.

After about 6 months, I had an army Physician Assistant diagnose me with LYME and he gave me a short dose of antibiotics. This helped but symptoms returned after treatment. I then found a LYME literate doctor some 350 miles from my home in NY. After a PICC LINE and four years of various oral antibiotics, I was feeling pretty good. Six months later the symptoms reappeared and another LLMD doctor was found and treatment restarted. Again I started to feel better and in 2006 I went off antibiotics while taking a trip around USA by camper. By the tenth week I was feeling pretty painful, old symptoms returning.

It has been a battle ever since. I have a strong body which if I can over look the pain, it will allow me to hike and bike, swim and kayak. The pain and tinnitus block my perception of joy, like enjoying something and then getting whacked in the face.

I am now approaching my LYME by way of alternative treatments, including herbal and other therapies. I have been lucky to be able to afford the best tests available and most any treatment prescribed. I am still hopeful for a cure.

My advice, do not wait, do not take no as an answer to treatment with antibiotics. The sooner you are treated and catch the bacteria while it is still in the blood stream, the better chance you have in wiping it out. At least 8 weeks treatment, since the bacteria life cycle is 4 weeks. And don't forget to treat for the co-infections. I've known many who got early treatment and do very well. I've also known some who have died when the bacteria attacked their breathing or heart muscles while being misdiagnosed. A tree arborist who got multiple tick bites, his toes curled in and could not be straightened. Even with treatment, he lost muscle control and had a fatal accident.

I feel that I am a lucky one, even with the ongoing symptoms. Joining the LYME group keeps me grounded and hopeful.

LYME Patient #6

T. - Waterville, NY

August 2013 - starts with a minor ear-ache

15-days later - I contacted my doctor and requested a test for Lyme

3 days later - No test results yet, but symptoms worsening (weakness, dizziness)

Doctor said to go to ER

4days at ER- being tested for stroke. All tests showed I was in great health (I was 69)

On morning of 4th day my wife got the LYME test results - I had LYME.

Doxycycline - prescribed enough to last 34 days. No quick benefits - but was much better when

the antibiotic was completed. After another month I would say that I was 98% recovered

(only my running and other exercising showed that I wasn't 100% back to normal).

July 2015 - 23 months after 1st LYME symptoms , woke one morning with 'brain fog'. Thought it could

be lyme-related. After 2 days contacted my doctor. She quickly prescribed 2 weeks of doxycycline

which quickly fixed things (about 3 days).

Since then (about 2 years) no symptoms at all - I'm back to perfect health again.

I have much more that I could talk about, but this is a brief account of my experience.

to last 34 days

LYME Patient #7

H. - Mohawk, NY

Early in the fall of 2017, I had a tick bite. Found the tick before it became engorged, and removed it successfully. Immediately after I pulled it, there was a small area at the site that looked like a bruise. I chalked it up to capillary bleeding at the time. Several days later, a rash developed at the site. It wasn't a "typical" bullseye rash, and there were no other symptoms. I decided to watch it, thinking it was a localized infection. There was no change in the way I felt, no loss of energy, no pain, nothing. The rash area grew larger, was warm to the touch, and just about the time I started to consider having it looked at by medical professionals, the first symptoms hit me. I'd had a good day, no complaints, but around 5 p.m. I suddenly experienced teeth-chattering chills, fever, nausea, unsteady gait, and general malaise. Took two Tylenol with a big glass of seltzer and crashed into bed. A couple of hours later, the fever broke, the chills went away, and for the next day or two I was just wiped out. Next morning, I went to Bassett Convenient Care. The nurse practitioner looked at the rash, reviewed the symptoms, gave me a clinical diagnosis of Lyme, and put me on 30 days of Doxycycline.

I'm compliant with medication and know enough to take the full course of antibiotics, which I did. The rash disappeared in a couple of days, and I was pretty sure the Doxy had done its job. I hadn't had any more episodes of chills and fever, and there had been no other symptoms. About two weeks after completing the round of Doxycycline, I had an identical sudden bout of chills and fever, nausea and unsteadiness (and at about the same time of day). Took Tylenol again, went to bed. Fever broke, chills went away. Another day of feeling exhausted. I went back to Convenient Care and asked for a recommendation about what to do next. More antibiotics? IV antibiotics? Wait and see if the symptoms recurred? Also asked for a Lyme titer, as the original diagnosis had been unsupported by a blood test.

Drew a CBC and Lyme titer. CBC came back with elevated WBC, which I had expected. A couple of days later, the Lyme titer results indicated I was positive for Lyme. I was advised just to see if the symptoms came back and to keep track of the date if they did.

So...I know that I have the antibodies for Lyme Disease, I've had 30 days of Doxycycline, the chills and fever have returned once, and at the moment I'm watching to see if more symptoms will develop, or if the chills/fever recur. No treatment at the moment. Not sure what to do next.

I do know that a percentage of patients develop a chronic form of Lyme that fades in time (months to years), so I'm not sure if I should see a specialist to be told the same thing, or just adopt a wait and see attitude about it.

LYME Patient #8

C- Newport, NY

My Lyme journey began October of 2016. My family had just moved to the country 4 months earlier. Having grown up in the suburbs my whole life, this was a new adventure and the beauty of nature that surrounded our new home was breathtaking, peaceful, and private. I imagine I was bit by a tick while enjoying our new property fishing, mowing several acres, and wading in the creek searching for Herkimer diamonds in our backyard.

Toward the end of September I began experiencing regular headaches, extream exhaustion from simple tasks, muscle and joint pain to the point of collapse from standing up for long periods of time, and difficulty concentrating from feeling dizzy.

I went to urgent care and explained my symptoms which also included an oval rash on my upper arm to which the nurse informs me looked like a bullseye rash from a tick bite. Blood work confirmed a positive result for Lyme disease and from that day forward my life would never be the same.

I was prescribed 10 days of doxycycline and told I was "cured" after retest and that I would always have the antibodies present for life. Who was I not to believe I was "cured" because until I was diagnosed I knew very little if nothing at all about Lyme disease and the ramifications just waiting to rear its ugly head 10 months down the road. Blood tests again revealed high bands of Lyme as well as the same symptoms as before and placed back on another 10 days of doxycycline. It was at this point in my Lyme journey that I would educate myself and become my own advocate. Several Dr. Switches since my diagnosis I am still searching, learning, reaching out, and educating others with my experiences to find answers and ways to manage my life through this maze.

I am happy to report that through social media I have connected with some amazing people through this website and I have been given new hope in discovering new ways to manage my symptoms physically and emotionally. I will not let this disease define me! I am a wife, mother, sister, daughter in my early 40's with Chronic Lyme Disease and living each day to the fullest!