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