My circuitous route to a Lyme diagnosis
By Jacquelyn Golan
Two years ago, if you had asked me to tell you about myself, it would have gone something like this: I am 30 years old. I co-own an event design company. I have a husband who is a successful songwriter and the love of my life. I have a pug named Peter who I adore. I like traveling to new places, trying new restaurants and hanging out with my friends and family. I just finished a six-month cooking course for fun. I love my life.
Worst two years of my life
Now, let me tell you about myself today. I am 32 years old. I have an incredible husband, loving friends and family who have stood by my side through the worst two years of my life. I am not able to work.
It is a huge accomplishment if I make it out of my house at all in a day. Cooking, once my favorite hobby, seems daunting and I must constantly search for foods that do not cause an allergic reaction. Everyday tasks that once seemed easy, now take every ounce of my energy to complete.
Two years ago, my life took a devastating turn. I had been feeling “off” for a few months. I was losing weight quickly and felt like the issue was stemming from my stomach. So, I went to a GI specialist. After my blood panel came back normal, he said whatever it is will pass and recommended I resume normal activity.
Shortly after, I went on vacation with my husband and in-laws. Then, all hell broke loose. I felt painfully weak and fatigued and began to have panic attacks, which I had never had before. It felt like they were triggered by something in my stomach.
I really thought I was going to die
By the end of the trip, I was too sick to fly. We rented a car and drove 19 hours home. I really thought I was going to die. I kept asking my body to stay strong enough to make it home so I could die in my bed.
By the time we arrived, I had an array of symptoms: severe aches and pains, a burning sensation all over my body, brain fog, shortness of breath, severe fatigue, and heart palpitations.
For the next year and a half, I was primarily house-bound, except for doctor visits. I went back to the GI specialist, who now said I had small intestinal bacterial overgrowth (SIBO). I could not tolerate the antibiotics he prescribed. I stopped them and went to an internist who said I had leaky gut and started me on that protocol.
With little improvement, I went to yet another GI specialist who could also not find anything wrong with my blood panel. He said my SIBO was not bad enough to cause the symptoms I was experiencing.
He then suggested it was all in my head. As did the next internist I saw. That’s the worst, isn’t it? Why would I make this up? I loved my life. This is the last thing I wanted to happen.
I was so weak and malnourished, I felt like I was dying. Why could no one help me? I felt like giving up. If not for my strong support system, I might have.
Many more doctor visits followed. Cardiologists, endocrinologists, energy healers, acupuncturists. You name it, I tried it. Still, no improvement and no answers.
Finally, a breakthrough
I then stumbled upon an integrative GI doctor who changed everything. I went there not expecting him to tell me anything different then the last specialist, but he did. He said my symptoms sounded like Lyme disease, and that he was sure my test would reflect that.
I was not convinced. I had been tested for Lyme twice before and both tests had been negative. I did the testing again anyway and there it was—positive for Lyme.
A range of emotions came over me. Sad, angry that I hadn’t been tested properly before, skepticism, relieved that I finally had a diagnosis.
He referred me to a Lyme-literate doctor and that is when I slowly started getting better. The LLMD put me on immune-boosting supplements, Lyme-killing agents and weekly ozone IV treatments, which would knock me out for days on end.
Today
Six months later, I am better but not yet back to myself. I still have setbacks. I have brain fog, aches and pains, food and chemical sensitivities, anxiety and fatigue. I continue with weekly IV treatments and take more supplements than I can count.
I still have days consumed by tears because of how much my life has changed. I still face excruciating thoughts rolling through my head. Is this my new normal? It can’t be. I won’t let it be.
I do think the worst is behind me and my goal is that when I am strong enough, I will dedicate my time to helping those with Lyme and co-infections. We need to build awareness. It is misdiagnosed way too often. Lyme hides. Proper testing Is essential. We need to make treatment readily available and affordable for those in need.
Until then, stay strong my fellow Lymies. And know that you are not alone.
Jacquelyn Golan lives in Los Angeles.
Thank you! My niece is struggling with Lyme’s and it is heartbreaking to witness her teenage years with this debilitating disease. Tomorrow we will have another fundraiser to help with the continuing medical costs. It helps me to understand what she feels like to read how you feel. Thank you for sharing this with the world. This is not a fun fight but one I know we can win! When you are ready I am on your team….feel free to reach out to me as I will fight by your side!
Most of us with Lyme have traveled the same horrible path to diagnosis and treatment. I was an active, busy personal trainer and mom to three teen sons when back and rib pain began to disrupt my life. Other seemingly unrelated symptoms started to appear over the years and the pain worsened to the point that I was having panic attacks before client sessions, knowing the pain that awaited me from all the lifting and movement required of me. The first two doctors I saw, a rheumatologist and infectious disease MD, dismissed my suggestion of Lyme and were sure my pain was “real” but that it was “psychological in origin.” “**ck you!” I said to the ID as I stormed out of her office.
Five years later, with medical debt into five figures and still sick, I’m trying to accept that this is the new normal, perhaps for the rest of my life. People who haven’t personally experienced Lyme disease have no idea how it can change your life completely and forever.
I wish you the best in your recovery and that you can eventually return to your business, full of energy and pain-free. Sounds like you’re on your way!
We who suffer from Lyme/Tick Borne Illnesses all have these same stories. When are we going to unite and start demanding our human rights?! When are there going to be class action suits demanding proper medical treatment? Our basic human rights? Against how we are being treated by doctors, insurance companies, etc.? We are allowing others to treat us in this manner. I do not believe more “research” is going to help us. Yes, research has to continue, but we need action if we wish to recover and survive. How to pay medical bills (when our insurance refuses to pay). How to handle bill collectors, collection lawyers, etc.. How to handle employers. I NEVER thought I would be in this position.
Phyllis Pastuzyn-I agree with you. There are so many of us, a lot who have been brain-washed in to believing that their problem is some other progressive, treatable with expensive meds and torture, but incurable disease like MS, Parkinson’s, mental illness, etc. You know this.
I saw an ID “doctor” who said to me “You don’t have Lyme. You have syphilis or HIV, and maybe hepatitis C.” I filed a complaint with the system she is part of, but have not yet reported her to Medicare, the state licensing board or the health dept (she didn’t report these infections.). Of course, she did not record any of this in my record so it’s my word against hers. I intend to openly record all of my “doctor” appts from now on.
I’m ready to revolt against the way we are treated by health care providers, insurance companies, even our government. How can we organize? We need strong legal representation to be sure.
You are fortunate to have a great support system.
Thank you for sharing. You are an inspiration
Thank you for sharing your story. I have been battling Lyme for about five years. Was so frustrated when I had to wait over a month to see a Lyme specialist and like you, he told me it was all in my head & there was nothing he could do for me. I have always been such an energetic person and Lyme has stolen my energy. I have brain fog, joint pain in many areas, am now experiencing anxiety & panic attacks, etc. I have pretty much given up on doctors and do a lot of research on line trying to find supplements recommended by other people that have Lyme. I have read a lot that has suggested if you keep your immune system strong that it at least keeps you functioning somewhat normal. I have purchased many supplements. Some from Inspired Nutrition, take oregano oil, and just started Egyptian Black Seed cold pressed organic oil by Sheaterra organics. Haven’t been on it long enough to see if it has helped my immune system. There are a couple other websites I would like to purchase supplements from, but can only afford so many at a time. Everyone reading this post, I wish you the best of health! Lyme disease is so challenging because it effects so many parts of your body & you don’t get one part of your body feeling better before there is something happening to another part either mentally or physically! Take care
So sorry for Jacquelyn. her path sounds so very familiar. So far the doctors never get any better or kinder. If they can’t solve the probable, then it is your fault. Diagnosed in 2002 after 3 1/2 to 4 years of going through a similar path before diagnosis, I had treatment. Treatment worked, but did not cure. With treatment jerked in 2008, I have only fallen back, but not quite as far as I was in 2002. I lost all my teeth, had to find my own testing mechanism to even prove to myself my health problems were still being caused by Lyme. I have a similar story, lost job, lost insurance, lost my former life. I am still barely hanging on. I have seen doctors who had never even heard of Lyme. Too long of a story. I so with Jacquelyn the best, recovery, and that she can get her life back.
This is so important! My beautiful and strong SIL has said it best, “the range of emotion” that comes to you when a doctor finally has an “answer” to pain/fear that has over-come your life is an incomparable sensation. I still believe that the symptoms I suffered on and off for 12 years were attributed to more than my fodd intake, but the strict gluten free diet I have kept for the past 9 years has alleviated enough symptoms to never go back to a full menu of foods. It is very possible I too suffered from some unknown source that no one could detect 20 years ago, and this saddens me. NO ONE should ever have to endure the uncertainty of one’s health. It is so over whelming to try to convince yourself that “it’s all in your head”, and hope to just snap out of it. Bravo for insisting for the truth, and a method to make it better. Your life is precious, and your contribution to helping others find peace for their anxiety of not finding a diagnosis is a testament to your incredible character and strength. I love you!
Thanks for sharing your story. With the exception of additonal symptoms (ear problems etc) your story sounds so much like mine and probably thousands more peoples’ story. Just wanted to make sure that you have been tested for babesiosis. Sad that it take so many eye rolls and pure humiliation for doctors to take you seriously when serious should be attributable to the fragile state you are in by the time its determined that lyme and company is the culprit. Nothing like being sick and ridiculed for it — not to mention any treatment is all out of your own pocket. No way so many people could read this exact same array of symptoms and not be related. Wishing you the best luck!!
Same exact story, happy mom, own garden biz, nice boyfriend, world came apart with relentless insomnia and trouble breathing. Countless doctors and specialists later I finally ended up with an integrative MD who suggested Lyme. I had been tested before but she said the Western Blot was a better test and guess what? I was positive! I am now on the road to recovered improvement as I call it….as I cant predict what will happen after my antibiotic treatment is over…I am going to continue with herbs and homeopathics when I finnish antibiotics after 4 months….I hope I feel even better then than I do today! I wish my healthcare would cover some of this which has cost me 6, 000 dollars so far this year
Not all at same doctor, but for books, and supplements, and various doctors and missed days of work…just wanted to add that…
Please check out the research about parasites in the body not letting Lyme, confections, mold, heavy metals and etc. get better. You really have to treat parasites first. Unfortunately there is not a very good test for parasites and many people come up negative when if fact they are positive for them. Dr. Jay Davidson just did a parasite summit discussing all of this. http://drjaydavidson.com
I have Lymes , I live in Poconos of PA with 10- 20 deer in my yard all the time. My daughter who lives in NJ just found out she has Alpha Gal another Tic disease. Allergies to meat & dairy. Any info from anyone out there will be appreeiated.
Info about alpha-gal allergy: https://www.lymedisease.org/tick-bites-meat-allergy/
Jacquelyn, thank you so much for your story!! Your story is so much like mine except my husband did not stay. He left me when I needed him the most. Thank God for my family and friends! After almost two years of being misdiagnosed and having almost every test possible (yes, I even had a doctor saying that it was my perception that I could not breathe even though I had breathing tests done and they came back abnormal). I saw a neurologist and she did nothing. She diagnosed me with autonomic neuropathy in November of 2016 and sent me on my merry way! My health continued to decline to the point that I could only work 2 hours a day (thankfully I own my business) and be in bed the rest of the day because the fatigue, aches and pains, stomach problems were so overwhelming. Finally, my girlfriend called an Internist doctor in Virginia and I saw him in July of this year! He diagnosed me with Lyme disease, systemic candida and SLE. Just like you, I was glad for the diagnosis but very angry that all the other doctors did not take me seriously and that it took this long to figure out! The doctor in Virginia then was referred me to a rheumatologist and she started me on a natural regimen along with hydrocortisone. I slowly am seeing an improvement after much trial and error. I still am not sure whether I am going to live or die but I wake up every day thanking God that I am still alive! This disease has really changed my life!
My mom was diagnosed with Lyme Disease, she was treated, but I noticed her memory had started to fade after being diagnosed. Now, I just got done arguing with her doctor, which happens to be mine too. I said her memory problems were from Lyme disease, he is saying it is hypertension dimentia. He said he has been to numerous seminars hosted by experts and that Lyme disease doesn’t affect your memory??? I also tested positive for Lupus, but my Rheumatologist says that I don’t have it, after further testing. I told him , something has changed in the past 2-3 years. He automatically said, what about Lyme disease??? That is what I initially got tested for, when I was pre-diagnosed with Lyme disease. Since my mom had it. These doctors better get their act together, they are not working for chump change. They bill the insurance company a lot of money
I was writing an email about my experiences with Lyme but lost it when I went to look up the spelling for nuturopathic which did help me for a while but insurances won’t pay them. (I pay for 100% coverage). VA won’t refer me to her. Sick for 16 months, tested positive 14 months ago. last November I was told by the infectious disiese Doctor that chronic Lyme did not exist – backed it up by showing my on the computer that The CDC said IT DID NOT EXIST although I had been sick for six months and had tested positive.
I was a young vibrient 79 now 80 year old, full of life, enjoying life now I’m just an old hypercondreac, looking for synpathy, mentally ill, pain in the ass grouch. IM STILL FIGHTING! I’m calling a new doctor now!
Joy
Dear Joyce, I hope you receive some relief from your new doctor. I hope your insurance covers your expenses. As I said many times before, we have to unite and fight how we are being treated. I do not understand how over 400,000 people can allow insurance, doctors, etc., treat us this way!? I found a Bd. certified doctor who treated presidents, their family members, president wannabes, and many other “famous” people. Yet Medicare refused to reimburse me for my expenses which have come to over $20,000 and counting. When I informed my doctor that because Medicare wouldn’t pay, my four other health care policies would not pay, I could no longer afford to come for treatments. He said to me, “I saved your life.” Yes, he did. For that I am thankful! I contacted Medicare and asked for ID doctors, covered by Medicare, who would treat me. I was given a list. When I called these doctors for an appointment, only one called back and said she did not treat TBIs. Called Medicare back and was told they cannot guarantee doctors to still be Medicare doctors. Round and round, spin, spin! This entire situation is a disgrace! But, as I have said many times before we are allowing it to happen. If you really want to be frustrated and angry, look up Zika baby from South America born in Hackensack, N.J. hospital. I am all for helping the world, but how can we help if we can not help our own? We were told we could choose our doctors. Pre existing conditions would be covered. etc., etc.. All I want is the same coverage we pay for our politicians and their families. The same coverage we are paying through our taxes that we afford to Zika anchor babies and our politicians. Am I wrong to want for myself, my family members and my friends who are suffering from this disease? We did NOTHING, engaged in no behaviors, to cause this to happen to us. I do not want sympathy, or pity, I just want what I pay for with my tax dollars and my health insurance payments. I do not enjoy being sick. I want my life pre TBIs life back. I do not enjoy calls from collection lawyers and collection agencies. I do not like being told it is all in my head. I do not like being told when I go to a doctor with a rash, that it is TBIs related and I have to pay “out of pocket” when I have FIVE health plans!
Phyllis, I’m in the boat as you. Guess we all are. I’m so tired of this crap. My PCP is sending me to various specialists; rheumatologist, dermatologist, etc., dividing me up into pieces.
I don’t know how we can all get together to sue the hell out of our government, healthcare providers, insurance companies, etc., and I’m too sick to try to find out how, but if anyone out there wants to demand care, I want in.
A class action suit is happening in Texas.
So sorry to hear your story & so far the outcome, but so glad you are still trying! I am determined too to fight this disease regardless that some believe there is no such thing as chronic Lyme. I refuse to allow people who have never experienced what we are going through to try to tell us that they apparently think we are just making it up for attention or we are just crazy! Good Luck! Wishing you all the best!
I can certainly relate to all of the symptoms mentioned, and I was bitten by a tick many years ago. It was in a place that I was unable to see whether or not there was a bullseye rash, (blush) but not everyone gets one. What does one do is they cannot get a proper test done. I’ve tested negative several times but in my gut I Know I’ve had Lymes for years. Life has become a daily routine of attempting to manage my symptoms and doing what I can to keep my attitude somewhat positive. That’s becoming more and more difficult. ?
Recommend you be seen by an ILADS-affiliated doctor, who can evaluate you for Lyme and other tick-borne diseases.
My search for a LLMD or ND has been fruitless. The ones that I’ve found are “not taking new patients” or “accept cash only.” I even offered my PCP info on a grant to become a LLMD, but he declined the offer.
After 29 years of this crap, I get sooooo depressed, but when I read narratives of others who are in the same condition as I, I fight for help once again. I am now living in isolation and barely above the poverty level, so for any of you Lymies who have money, please try to help change our government’s, and our healthcare system’s view of TBI’s. I am unable to hire attorneys.
Yes, I’ve read all these and can relate to all of them. I’m 80 years old. I was bit twice 18 months ago. After being dinosed with Ecoli two months later with Lyme. too late for one 21 days of Doxy. I’ve been sick for 18 months. I’ve been told chronic Lyme does not exist. It will probable take. Year to feel better. Etc.,etc., etc. I bag for a cure but I’m labeled as a hypochondriac.
I fought with insurance companies. Non will do anything. Even with all the news on TV about Lyme I get no help at all! How do these people get over it?
I was a strong, happy active person. Way active then the majority of people my age. Never cried, camping, hiking, sky diving, RV traveling with my only complain Gypsy, my cat, Sence I was 69 I’ve been all 50 state. Now I break out crying and pray for death.
I’m a Veteran. All VA will do for me a wee bit of pain control, and send me to a phyicatrist which I greatly resent. Is there no help at all?
I was paying out of pocket for a naturopathic doctor and paying for natural medicine which began to help but I ran out of money. I pay dearly for Medical Insurance but they won’t help for pay the ND. I have over 100% insurance plus the VA coverage but neither help.
I’m interest in the law suit a group in Texarkana is bring against the insurance companies!
Joyce, I am with you. I am going to contact the lawyers in Texas and find out how I can either join or start a class suit. Now that we will no longer be able to take medical deductions off income taxes, I am more than angry! Does anyone out there know what to do? I would think with more than 300,000 of us someone would know how to start a law suit.
Phyllis, I’ll join a class action! I am not a good leader BUT I can follow! Along with what you have said I did get some help from a Naturoligest (spelling?). But even with over 100% med. insurance I have to pay “out of pocket all expenses”. Insurance – I’m a veteran VA, I pay for AARP insurance and pay for Medicare. NONE OF THEM WILL PAY A CENT FOR TICK BORNE DISEASES!
A friend resently died of “Encaphalopathy due to anaplasmosis”!
JOY (Joyce)
Joyce, my heart breaks for you, actually all of us.
Phyllis, if you find out how to take legal action, count me in. Martha
Yes for all of us! I don’t know how to take legal action. I need directions how to get in touch with the Taxas group. What to do, how to do it. Phyllis mentions a class action. I’ll join a class action.
nickname JOY — not doing a good job living up to my nickname?
I want in too. I’m so sick of being sick and tired, ridiculed by supposed MD’s who are afraid of Big Parma, CDC, NIH, and other powers who take their licenses for trying to help sick people. This is unacceptable. Somebody, please tell me how to help us get help.