What does your future look like living with chronic Lyme Disease? Chronic Lyme disease, its symptoms, and recovery protocol and timeline are different for every person reading this article. Of the many thousands of new Lyme disease cases reported and treated, 10 to 20 percent of the already confirmed cases turn into Chronic Lyme Disease. These Chronic Lyme disease figures are a very conservative estimate because it is severely underreported and resolved.
Is there an answer for Chronic Lyme Disease patients? Can we ever live a normal life again?
The thousands of people in the Lyme groups show that some patients who get treated early by an experienced Lyme-literate doctor do recover with time and proper treatment. More patients than not do not get treated early nor have the money to visit a Lyme literate doctor at the onset of symptoms or bites. Most patients see up to 10 general practitioner doctors before being seen by a Lyme-literate doctor. By the 10th general practitioner, they have been misdiagnosed for mental problems, fibromyalgia, ALS, allergies, and a myriad of other diseases which are all wrong. The time lost getting a proper diagnosis and treatment leads to thousands of cases that turn into Chronic Lyme Disease. For those patients, it takes a lot of weeks, months, and or years to get their life back.
I will say from personal experience that I do have my life and memory back after a few years. I did get better with antibiotics in the beginning from the worst symptoms but for me, antibiotics did not work well in the long run and destroyed my gut function. I went to an herbal protocol and that set me on the path to having a life again. Am I fully recovered? I still use an herbal protocol to make sure it does not take over my system again. Be prepared to be your own advocate and researcher. Know everything about Lyme disease and its co-infections. Join the Lyme disease organizations and dedicate yourself to reading every article. Know that you will probably have to spend up to $2000 or more from your own savings to get the proper testing, the GP doctors will not order. If you want your life back, you must do these steps to win over Lyme disease.
Factors that influence the Lyme Disease Journey
There are so many factors that come into play such as when treatment began, what doctor you went to for treatment, what tests were performed, when the tests were performed, what lab they used for the tests, the doctor’s expertise at reading the test results, the antibiotics used, the dosage of antibiotics given, the general health of the patient before getting bitten and after.
The longer you wait for treatment, the longer it takes to get well. Your attitude and lifestyle make a difference as well in getting well. Those of us who were not treated properly at the onset, often with time, experimentation and time find a program that works for our individual body and immune system. We are willing to keep at it until we get better. There is no cookie-cutter answer or treatment that works standardly. It is an individual journey with individual-oriented answers for treatment.
For many of us, Lyme or its co-infections cannot be completely eradicated from our system. We learn how to keep it at a level where we can maintain a normal life for the most part. There are relapses in which we learn from experience how to personally treat ourselves. I use herbs and have for the most part after the first initial diagnosis.
The Value and Problems with Lyme Disease Groups.
I am a member of several Lyme groups on FB. One of the reasons I joined these groups is to learn about which programs seem to be working for sufferers and get a temperature on treatment progress success. I see less permanent long-term success with antibiotics in the chronic Lyme group.
In the new patient groups, there is some success when people seek treatment immediately with a good Lyme literate doctor who uses combinations of antibiotics and treatments.
Saying that the majority don’t visit a Lyme-literate doctor first. They go to the local GP who gives them 10 days of doxycycline and says your good. So many thousands of patients end up fighting the disease for months or years.
Misinformation is everywhere in articles and Lyme groups.
One of the problems with Lyme groups is that members come on and tell people that tick disease is only a problem if the tick has adhered to your skin for a few hours or that if it is a certain kind of tick, don’t worry about it. They downplay the seriousness of tick bites. Lyme disease is ONLY ONE Of many co-infections that can be transmitted in tick bites. Your standard doctor will give you only the standard test for Lyme or Rocky Mountain Spotted Fever which are very ineffective for the majority of patients coming into the office. They have limited knowledge of reading the tests, the proper treatment, or problems with co-infections. Thousands of us went that route and lost so much time and years with ineffective treatment. Some group members spread misinformation. Some of these groups do have leaders who work hard to monitor their groups. So just be aware of that. Articles you read other than on Lyme expert sites, also pass on these mistruths about Lyme disease. Some of the articles are written by standard doctors who have no clue about testing or treating Lyme disease properly.
The value of going to an experienced Lyme Disease doctor cannot be overstated.
If you want your life back, he’s the only type of doctor who can help you. Standard GPs and infectious disease doctors waste precious time with wrong diagnosis and treatment often telling the patient they are crazy or making symptoms up. There are a lot of patients who have been diagnosed with ALS, but years later when tested for Lyme disease, find that Lyme not ALS is the real cause of symptoms.
If you have been bitten and have symptoms, your best bet to have a future without the many symptoms that affect your life, your ability to work, parent, and have a quality life is to seek out a Lyme Literate Doctor. Yes, you will have to pay for it without insurance but going to a standard medicine doctor without experience in Lyme Disease will not solve your problem. Neither will testing from your standard Western Blot test or Elisa test ordered by your regular doctor. Even if you are lucky and it shows you positive for Lyme Disease, it will not tell you what co-infections you may have as well. Very few individuals suffer from just Lyme disease. Most of us have one to four or more co-infections as well. Each one of those co-infections may need a different treatment. You need to bite the bullet and get testing done through Igenex which is the most accurate testing available. That will set you back about 1500 or more but is the only testing that will do the job correctly.
The failure of treating tick disease with 10 days of doxy is a story told by patients by thousands. I am one of those stories.
If all your doctor prescribed is 10 days of doxy, more than likely that will not stamp out your Lyme disease. It may help to some extent but often after the antibiotics end, the Lyme bacteria just begin multiplying and take over your body once more. Doxy does not treat all the co-infections either that you may be sick with along with Lyme Disease. It depends on your immune system function, your age diet, and general health how well you overcome being bitten and the infections it creates. Even a month of treatment may not be enough in some cases. Once you have had Lyme for months or years, it is an uphill battle to gain control of your health. Without the expertise of a Lyme literate doctor and treatment, you may experience debilitating symptoms that make your life hell.
My doctor won’t give me antibiotics or order the proper tick diagnostic tests. I don’t have the money to go to the doctor or get the proper tests.
If you have no money to access doctors or to receive antibiotics, then there are herbal protocols that can be very effective if implemented properly with the correct herbal formulas. There are only certain herbs that work against Lyme disease and its co-infections. It is extremely difficult to pin down what co-infections you may have as well without proper testing. There are Lyme experts listed on this site that are treating patients successfully with herbs. There are several books you can buy to learn this on your own and implement the herbal protocols.
If you go to the Lyme resources on this page, you will find several doctors such as Dr Rawles who have websites and books to help you get well. He suffered from Lyme. It affected his career and his life. You must educate yourself with these experts, and read their articles, and it still involves the expense of buying herbs monthly for months or years. There is NO easy answer but doing nothing will put your life and health at risk.
Lifestyle Factors that improve the outcome of Chronic Lyme Disease
Lifestyle factors that help you get your life back include getting rid of sugar, junk foods, sodas, chemicals in your house and foods you eat, exercising, losing weight, reducing blood pressure and blood sugar, reducing your stress level with lifestyle changes such as music, nature walks, yoga, hot baths, and saying NO. You must work to improve all the layers of your life to improve immune function and defeat Lyme disease. It starts with cellular health.
Where am I on my Chronic Lyme Disease Journey?
Today I am going to talk about my husband and I and where we are 9 years later after living in TN for 5 years, then living in Yuma, Colorado for almost 4 years. This was also after being bitten over and over during those 5 years in TN. I was one of the lucky ones who did have a positive Lyme test but was not correctly diagnosed until over a year later. It was not treated properly. The co-infections were never treated properly until I began working on them myself here in Colorado.
When I was finally diagnosed, the doctor only knew to give 10 days of doxycycline. I didn’t know about co-infections and we would not have had the money to get tested for them anyway. My doctor’s view was 10 days of doxi and you will be fine. That is how they treated it back then. The problem is we were getting bitten every day…with welts upon welts. Even the day we left TN in 2020 with a moving truck being packed, we both had tick welts. Our doctor gave us a 10-day dose of doxy to take as we were on our way to Nevada. Now we were still experiencing symptoms before that last tick assault. I couldn’t get the doctors to test my husband for Lyme because he had experienced and been to the hospital with Rocky Mountain Spotted Fever. I still experienced symptoms of many kinds including memory issues. At least moving from TN, we no longer experienced weekly tick bites and welts. That was a good decision. My sister and her family who never took our Lyme disease seriously ended up with her husband in the hospital for Rocky Mountain Spotted Fever. They have many symptoms of Lyme disease but will not even try to get tested for it. This is the attitude of many Southerners. The year we got diagnosed, several neighbors who had lived in TN all their lives, ended up in the hospital and being diagnosed with tick disease. This is not one or two but at least 10 cases in our small area outside of Clarksville. Again, all of these cases were people who grew up in the area.
Today’s Update on my Chronic Lyme Disease Journey
Today is July 12th, 2024, and comparing myself to others who have Lyme disease, I am doing so much better than most of them. My husband is better although his white count is still at 28,000 and his Lymph count is extremely high. We have kept it for the most part from advancing higher. It was only in May of last year that research was published to show that Borrelia attacks and destroys white cells and there is evidence of Lyme Borrelia in connection to Chronic Leukemia. I suspected that all along but could find nothing to back me up. During the past 4 years, we were not treating it properly. Our neighbor who goes to a very expensive LLD in Colorado is sick most of the time. She is in her early thirties. Several people I know just have given up and were never treated properly at all from the onset. We walked a mile and a half today. We don’t have high blood pressure or blood sugar. My memory has improved dramatically. We still are working on Marty and his high white blood count issues but the majority of his labs are normal. I thank God for where I am today in my Lyme Journey and my herbal protocols.
