Chronic Lyme Disease is a battle that thousands face every day. It is a battle to get a diagnosis, then a battle to get proper treatments, and to regain your mental and physical health over weeks, months, and years. It is a battle that I face as well. My story will be different from the thousands who live with Chronic Lyme Disease. As we each tell our own individual stories, it helps others on their path. It supports those of you who are looking for a diagnosis and those who are struggling with the different treatments available. You will know you are alone, even though it feels that way when family and friends turn away. You will know you are not alone in this arduous path to overcome Chronic Lyme Disease.
This is 2nd part of my story of Chronic Lyme Disease and my battle.
Part 2 Finally a Lyme Disease Diagnosis and first treatment.
In the Spring of 2019, thought I was dying from cancer or Parkinson’s because of the loss of memory and balance.
At the point I got diagnosed, it had been about 6 weeks of fevers, muscle pain all over the body, weakness, severe loss of balance, loss of weight, severe worsening memory loss, emotional upheavals, rage with no reason, loss of emotional stability, and eye pain in the sockets. I thought I was dying of some dread disease like cancer or Parkinson’s. My family and neighbors noticed my behavior and memory problems. I left the stove on constantly. I would just forget what I was doing like cooking eggs on the burner. I could not answer questions about the plants I was selling. I looked sick and I was. I was losing it mentally and physically and it was frightening.
The new doctor, Dr. E, on that first visit actually thought I had Ehrlichiosis but tested me for Lyme Disease as well. The tests came back positive for Lyme Disease. Dr. E was a good doctor for diagnosing the active stage of tick disease but knew little about the later stages of Lyme when antibiotics don’t work well. At first, I was relieved to know it was not cancer or Parkinson’s but that relief was short-lived once I began researching Lyme Disease.
As much as I hate antibiotics, I did take them the first 10 days after being diagnosed by the doctor in 2019. At that point, I was so sick and had been for weeks, that I took them. I had treated my illness with herbs like goldenseal and garlic thinking I was ill with a typical infection, not Lyme Disease. Typical cold and flu herbs do NOT work on Lyme Disease. It is a whole different kind of illness and needs specific treatments.
Antibiotics only partly worked on my symptoms.
I took the Doxycycline for 10 days which he thought was long enough. It is now known that often 20 days to a month is a better regimen to kill the bacteria in the system. I have a serious problem with antibiotics and gut pain so I doubt if I could have taken the dosage for 20 days anyways. Generally, after 10 days even with probiotics and herbs such as slippery elm to cut down on the gut disturbance, I am in so much stomach pain and diarrhea, I have to stop the antibiotics.
While I was taking the antibiotics I began intensely studying Lyme Disease which was not in my knowledge base at all. I found the general knowledge first and then ran into Dr. Rawls’s site on Lyme Disease and Chronic Lyme Disease. I bought his book and inhaled every article on his site realizing just how serious this disease is.
Misdiagnosis or a doctor’s ignorance of Chronic Lyme Disease is the norm!
I actually had gone to a doctor twice during the time period prior to being finally positively diagnosed by Dr. E. I was told both times it was the flu not tick disease and the doctor would not even order the tests. This is the tragedy of many who try to get help. This was in an area where tick bites were a daily trial.
There were several months in between those doctor visits and the one with Dr. E. I was also taking care of my father-in-law full time who was dying and working with my husband on a backyard nursery business. I had been burning the candles on both ends resulting at that point in physical and mental burnout.
So for me, I just blamed my worsening health on stress and physical burnout. That certainly was the backdrop for Lyme Disease hitting me like a tornado. My immune system was severely down. I was grieving from loss. I ignored my deteriorating ill health. We had a business to run and I refused to give in.
Southerners Do Not Take Ticks and Lyme Disease Seriously…that is a real problem. They accept the doctor’s statement that their continuing symptoms are not Lyme or that there is nothing to do for their problems.
When you live in the south, you pick ticks off daily. We never went a night without a shower and a new set of clothes. We examined each other nightly for ticks and when we came in from working outside. In TN they fall onto your hair from the high bushes and trees that cover almost every inch of your property. Even with the cleared areas and chickens, we picked them off with every trip outdoors. In TN at the time, most people who grew up there like my sister and her family take them for granted like other bugs. She did not take me seriously when I got sick. It wasn’t until we left TN and my brother-in-law ended up in the hospital with Rocky Mountain Spotted Fever that she now takes ticks and tick bites seriously. She still won’t get tested herself. Even though he still suffers from fatigue and loss of balance, he will not consider he has Chronic Lyme disease. He just refuses to address the issue.
Wow, our whole area was severely impacted by ticks carrying either Lyme Disease or Rocky Mountain Spotted Fever! Chronic Lyme Disease affects thousands of lives.
After I got sick, I began asking everyone I met if they had experienced tick disease. Almost everyone I asked in our area had either been ill in the past or had just been sick and some had been in the hospital with either Lyme Disease or Rocky Mountain Spotted Fever. My husband ended up in the hospital with RMSFever about 6 weeks after I got diagnosed.
Antibiotics often do not stop Lyme Disease which often progresses to Chronic Lyme Disease in the end.
Most of these people thought that the 10 days of antibiotics was the end of their problems like a cold or flu. It was our closest neighbor who talked to me about his reoccurring symptoms of fatigue and other symptoms long after his first antibiotic regimen. He had gone back two or three times with continuing symptoms. His doctor was aware that tick disease problems exist long after the primary treatment of antibiotics.
One man we ran into still had an abnormally high white count after being in the hospital with Rocky Mountain Spotted Fever 3 years prior. Others had remaining symptoms as well but their doctor said they were crazy or admitted they had no treatment after the antibiotics did not do the job in the long term. These people just accepted their fate. Most are stubborn in the belief that standard medicine doctors with no real experience in treating tick disease, have the answers. It is like taking your old tractor in for repairs at a Mercedes dealership. Tractor repair needs a tractor-trained mechanic. Lyme disease needs an expert in Lyme disease.
10 Days of Antibiotics are not enough in many cases!
My 10 days of antibiotics did take away the fevers and much of the body pain. My balance did improve significantly as well, but the severe eye pain in the sockets remained, sensitivity to light and sound, aversion to eating meat, and problems with memory, and concentration, with emotional rages for no reason. I was a disaster mentally. After working on the backyard nursery for over a year, I could not physically or mentally work at it.
I chose the Herbal Regimen Route from Dr. Rawles’s protocols for my Chronic Lyme Disease.
I was already familiar with Neem, and Andrographis which was two of the herbs in Dr. Rawls’s herbal regimen for Lyme Disease. I had several Neem trees growing in 20-gal containers. I added Japanese Knotweed as well to the new herbal protocol. Cats Claw was another one to add. I took doses of all these herbs three times a day. Within two weeks the eye pain was almost gone. My brain and memory function improved but was still really bad at this point.
When I talked to Dr. E about the eye pain, he responded that his other patients were complaining of that too but he did not know how to help them. If you research Lyme Disease you will find information on how Lyme affects the eyes. The bacteria feed on the collagen in your eyes and face causing eye pain and hair loss. Hair loss was one of the first symptoms I noticed before I got so much sicker. I bought an extra book and gave it to Dr. E who was very grateful. He did read it as well and in the end, became a very good Lyme-literate doctor with much more knowledge on how to treat his patients more effectively.
I then got the book Lyme Brain which gave me the knowledge and validation of the mental and emotional symptoms I was experiencing. I added brain herbs such as ginkgo to the regimen. I discovered Lion’s Mane, a mushroom that helps the brain to recover, and choline. After beginning the herbs for the brain as well as herbs to kill the Lyme bacteria that had taken over my body, I slowly got better.
We realized that moving to TN and living in an area of severe tick infestation had been one of the worst decisions of our lives. We made the decision to give up on the nursery and move to an area where we didn’t have to deal with ticks. That decision ended up being in Yuma, Co somewhat near our daughter in Denver.
A tick gift on the way moving out of TN.
On the day we were about to move out of TN, with the u-hall loaded, we ended up going to the doctor on the way out of town with huge welts on both of us from ticks. He had the classic bull’s eye. I had a huge welt on my back as well. We took antibiotics during the whole trip leaving TN until we landed in Colorado finally. We were afraid we would end up really sick again during the trip.
Between those new tick bites, the trip stress, and the stress of moving and leaving everything we had worked toward for almost two years, we were a mess. It was two years later before I felt like I was over the worst of it. It has taken nearly 4 years to get back to writing articles. My husband still has fatigue and an abnormal white count. His health problems are more of a puzzle because he had been seriously ill with Rocky Mountain Spotted Fever plus possible Lyme Disease as well.
Do you think you have overcome Lyme Disease for good? Perhaps? Perhaps NOT.
I have had two setbacks in the past year that I did not realize were Lyme Disease in the later stages. I was fooled and I learned an important lesson. Lyme is a challenge for most of us and is NOT stamped out easily. It hides in your tissues and can go dormant for weeks or months! Some researchers did autopsies on two patients who had died and donated their bodies to science. Both had been treated when they were younger for Lyme disease with multiple rounds of antibiotics. Years later they developed dementia and mental symptoms. Borrelia was found intact in their brains and in their spinal fluid. Their dementia was from Lyme Disease and not other causes.
You may experience no symptoms for weeks, months, or years only to see it rear its ugly head once more. Lyme Disease bacteria are quite sophisticated being able to change shape, avoid antibiotics and herbs, and go into a dormant stage for weeks or months. I know that when my balance gets off or I begin to react to life abnormally or have anger flare-ups, I need to go back to the original herb dosages. I will notice my brain function is impacted. It may be I see more hair in the brush than usual. Eye socket pain is one of my symptoms that reoccurs again when I am in a flare-up. A flare-up means the bacteria are replicating again and attempting to take over again.
You may think as I did that you are finally well and recovered only to learn that you still have the disease..laying in wait for an opportunity to take over your life again. Lyme disease may reappear in new symptoms. In my case, I really didn’t think of Lyme Disease.
Symptoms of the first attack lasted for weeks back in the middle of 2022.
For some reason, it did not hit me that these severe throat and neck symptoms were Lyme related. Sore throat and Lyme did not seem logical. Turns out frequent sore throats are indeed a problem in Chronic Lyme in the later stages. The neck pain was really frightening. At one point it was so severe that I could not turn or lift my head without pain when laying down. One night the pain in the back of my head was so severe I almost went to the emergency room. I did not know that Lyme disease can cause Lyme meningitis. I know I had never experienced that kind of pain before. That night I took all kinds of herbs and the pain did go down to a tolerable level.
I did go to the local doctor after the severe neck pain that night who diagnosed it as a dangerous, severe infection impacting my lymph nodes. I took the doxycycline he prescribed out of desperation but it only seemed to help a little with the different symptoms. I took 10 days of antibiotics, then got such severe gut pain and diarrhea, it was 2 months before I could stray very far from the bathroom. I could eat almost nothing without stomach pain. No more antibiotics. It took 4 months for the sore throat to improve. I found that the essential oils of Frankincense and Myrrh worked on reducing the neck pain over a few days to mild discomfort. I still thought it was an infection, not Lyme. I took probiotics, digestive enzymes, and herbs such as slippery elm to soothe and heal the gut damage. Olive leaf tincture and black seed oil did seem to reduce the sore throat over time. I was left with a weird white coating that looked like flattened white blisters on the back of my throat which did not get worse or better even as the throat pain went away.
In November of last year, I did finally get into a throat specialist after being on a 4-month waiting list. I wanted to get a diagnosis of the white coating over the back of my throat. By that time I was mostly well except for the coating on the throat. I was afraid of throat cancer. He did a thorough exam including putting a camera down my throat. His diagnosis was scar tissue. He asked me what had happened, and what I had done for the sore throat, and actually listened to me. At that point, my throat overall looked pretty good. He basically told me to continue my program. He was not a Lyme doctor so he did not bring up Lyme period even though it was on my patient history form. I still didn’t get that it might be Lyme Disease related.
From Oct 2022 to March 1st, 2023, I felt the best I had since 2019. We went to see our son and family in California at Christmas going on 3 different planes. Never got sick and had a great time. We got home in Jan and I felt like I had a new lease on life. I began writing again for the first time since 2019. I felt on top of the world. I had stopped taking the tick herbs because I felt so great. I really thought I had beaten it.
The second attack began on March 1st! I woke up sick with a nasty, painful sore throat. We are talking about this month, March. Then the symptoms spread after a week, again taking over my lymph nodes, neck, and back of my head. I did think it was perhaps strep and did again go see the local doctor who was useless. The only good was that he did perform a strep test which was negative. At that point, I knew we needed answers. I tried several different herbs that worked on viral issues but could get no relief from the painful sore throat. Nothing was basically working on the throat. The essential oils did relieve the neck and lymph involvement.
We needed to spend the money on an expert. What kind of expert? I decided to search out the late-stage symptoms of Chronic Lyme Disease and possible throat and neck pain. I had missed these links when researching this in 2019 because I did not have those symptoms three years ago. I found a lot of new material on the subject. So it was a Lyme Disease specialist we needed. We opted for a video phone appointment first. There are mainly two doctors who are experts on Lyme Disease and actually have appointments over the computer or phone. Since I did have a diagnosis from a doctor, it was easier to go forward.
A video consultation with an expert in Lyme Disease and Chronic Lyme Disease
Neurological Lyme- one of the symptoms of late stage Chronic Lyme Disease
Surprise …Surprise… it’s a new chapter in my Chronic Lyme Disease Battle.
You have Neurological Lyme...was the Lyme doctor’s diagnosis two weeks ago! I had some blood tests drawn as well. My symptoms which none of the local doctors could figure out matched perfectly with neurological Lyme Disease, one of the complications of Chronic Lyme which can start weeks or years later after initial diagnosis and treatment. In my case, Lyme is showing itself in neurological symptoms that include sore throats and neck pain. So at this point again and for the foreseeable future, I will be again taking heavy doses of the original herb regimen.
So after two weeks of misery, a visit to a local standard medicine doctor again, a negative step test, and NO answers, we paid for a video conference with an expert Lyme doctor! We did get answers from working with him. Lyme Neurological Disease was the diagnosis.
It was only after his consultation, diagnosis, and treatment recommendation, that I started back again into a heavy-duty regimen of tick protocol herbs did my current symptoms improve. Neem, Andrographis, and Cats Claw are not only known to be antibacterial and antiviral but kill Lyme bacteria as well. Medicinal mushrooms are also in my daily program to support my immune system. I take a full regimen of supportive vitamins and minerals to boost my health as well. I feel almost normal now after being sick since March 1st. The sore throat is gone. My brain feels normal again. That $300.00 for a video conference with Dr. R was the best money I have spent since 2019 when my Lyme journey first began.
He also told me that my husband’s symptoms of an abnormal white blood count and fatigue since he was initially sick with Rocky Mountain Spotted Fever are probably the result of an underlying Chronic Lyme Disease condition as well. Here we could not get any doctor to look at that issue. I am giving him the full regimen of Lyme Disease herbs and will have his blood checked again in three months.
People are suffering all around us! They do not say much because they have experienced family negativity about their health or have been to doctors who say it is all in their head….you need a head doctor….you are making it up….trying to get attention….so tragic and sad. Only if they know you have it, will they talk about it. Most have given up and feel there is no hope. We need to shout about Lyme Disease and talk about it! We need to fight the misdiagnosis and doctors who don’t have a clue!
Lyme Disease is a constant teacher who reminds me that if I do not listen to my body and pay serious attention to it, I will again be fighting for control. There are no Lyme literate doctors in this part of Colorado which is the plains area. Our next-door neighbor who is only 30 goes to a Lyme Doctor 3 hours away at a heavy cost financially. Her health is much worse than mine. She is in a constant fight for her health. Another woman did not get diagnosed for years and can hardly function. There are 5 people in this little town of 3000 who suffer from Lyme Disease but did not get diagnosed until years too late. They have no money to go to a Lyme literate doctor in the Denver area when insurance will not pay for any of the testing and treatment. They just suffer. I am one of the blessed!
All for now, Cathryn Freer, the Herbladyisin
Other references to help you in your path to recovery from Chronic Lyme Disease: