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Lyme Disease Support Network

Fear of the Unknown


#1

Forgive me in advance for the length of my story. My problems began in June 2016. The weeks prior i was in tip top, 110% shape. I had just completed a 10 miler and my first half marathon. 36 and feeling on top of the world.

It began one morning where I felt this muscle tension in my back, specifically on my spine and neck. I felt like something was sitting on my spine. I did some light stretching, but didn’t think much of it. A few weeks later that stiffness increased. I remember waking up and feeling “creaky.” I felt like something was wrong, but couldn’t exactly pin point it, so I chocked it up to anxiety from a very stressful summer. A few weeks after that, my family and I were camping in central Virginia. It was 95 degrees that day and we were boating. My heart was racing at 140 bpm. I felt incredibly dizzy, nauseated, the works. I ended up in the ER, and they chocked it up to being dehydrated. A few days after this incident, I was in my car, and had an incredible muscle spasm through my back. So bad, that you could see it through my clothes. That day I was luckily able to get into an orthopedic who sent me to physical therapy, telling me that I was misaligned. With relatively nothing else going on I bought it. August rolls around and after weeks of PT I still can’t shake this stiffness, and by now I was having stomach issues, heart rate was going crazy, ended up in the ER twice more, My PCP a few times, only to stump the doctors and left feeling like a hypochondriac. My PCP blew me off completely and said nothing was wrong with me.I fired him immediately.

During my ER visits I had EKGs, Stress tests, x-rays, ct scans, ultrasounds of my abdomen, Hida scans, and I think every blood test under the sun. I was asked at that time if i had any weird rashes or bites, and at the time I couldn’t remember any. IT was single handedly the worst lapse of memory I have ever had. They chocked it up to being a pinched nerve somewhere along my thoracic spine, and the elevated heart rate was in response to the pain. I continued PT and even started Yoga to help with the severe muscle tension. \

But, by October, my symptoms still did not subside and I started with a new PCP. She conducted quite a few tests, including a Lyme test upon my request. She noted my tachycardia in her office. I think I was hovering around 110. From these tests, the only that came back abnormal were my B12 and D levels were low. ALso, allergy tests came back positive on foods that I have eaten my entire life. These tests were later disproved. The Lyme testing, only a Western Blot came back “borderline.” I am not really sure what that means to this day. At the time, I had 3 IGG postives, 41, 58, and 66. I had only one IGM positive, and that was Band 23. I agreed at that time to do a month of Doxycycline because I felt that the benefits outweighed the risk. Up until this point in my life, I have been relatively healthy, no immune problems, and literally a cold every few years. So, i took the antibiotic, with a probiotic, the sub lingual B12, zantac, and D supplements, thinking in a month I should feel like a million dollars. It is now around Thanksgiving and my family and I are going to the mountains. I developed a shingles rash on my right side, which my doctor attributed to the long term antibiotic usage. It took about a month to go away. Also, I still had severe pain in my neck, shoulder, spine, and back. I had also developed this weird dry mouth/sore throat. I didn’t have enough saliva to even swallow.

I was sent to an ENT, who diagnosed it as LPR, which he prescribed once again more prilosec,zantac, a mixture of both, which I took for several months with no success. I went to a gastro, had an endoscopy, a colonoscopy, all which were negative and normal. Also, was referred to the rheumatologist, where he flat out said to me that nothing serious was wrong with me. I absolutely did not have Lyme and he wouldn’t order any tests because he didn’t see any of them coming back showing anything remarkable. I mentioned how sick i felt prior to taking the antibiotics, my heart rate going crazy, and how most of the symptoms subsided after taking them. He mentioned the anti-inflammatory aspect of them. Prescribed some flexeril and insisted I take them for 2 weeks to help with my stiff neck. They did absolutely nothing. So, after this I felt pretty confident that I was dealing with a muscoskeletal issue. It is the only thing that hasn’t been fully addressed and corrected. Back to PT I went. After some manual adjustments and dry needling I felt about 80% better. I was able to resume running again, completing a 10k in March and for the most part resume my active lifestyle.

Then in April/Early May, that weird feeling started creeping back, my throat being dry and sore was becoming more of a nuisance, and that pain was holding me back again. I was constantly chewing gum, drinking water, using Biotene to help with it. I go back to my Physiatrist and asked for an MRI on both my thoracic spine and cervical spine. Thoracic SPine came back normal. My cervical spine had some issues. Some disc bulges AND a sublaxation on C5-6. Phew, I thought to myself, finally an answer that explains the pain that I had been having. But, then a curve ball was thrown at me. The radiologist noted that I had several prominent lymph nodes that were likely “reactive” in nature.

Back to my GP, who ordered an ultrasound of the nodes, a mono, strep, and another lyme test. Fortunately the ultrasound of the nodes that none were larger than their guidelines. MY mono test came back that I had previous exposure (which I can’t think of a time when I had it), but everything else came back normal. Then I get my Lyme test back. IGG positive now for bands 23, 41, 58, and 66. IGM positive for Band 23. I have now been given a referral to an Infectious disease doctor. I am concerned because our area does not have alot of doctors that treat Lyme, and cannot get into one until September. That was last month. Since, I had developed what I want to say feels like a sinus infection. I tried dealing with it on my own for 3 weeks, with decongestants and saline, but once my eyes started swelling I knew I had to go back to the doctor. She prescribed me a 14 day course of Cefuroxime, 250 mg twice a day. Her office has been working to get me into a doctor, but they have had no success thus far.

At this point I don’t know what to think. The first time I had the Lyme testing I wasn’t convinced it was Lyme. I knew that the testing wasn’t 100% positive and there was no Elisa test conducted. This second LYme test has me extremely confused. How can a band be IGG and IGM positive? I know some of the bands can be associated with other diseases, but the band I question and my doctor questions is 23. What other diseases can be associated with that band? I have read HIV, which I don’t have, is a possibility, but what else can produce that antibody? I admit, I am at a loss here. I don’t know if I have lyme or not. If i do, how aggressive should I be now at trying to treat this if I cannot get into an infectious disease doctor for months? Have I been naive to think that because I was not CDC positive either time, I likely did not have Lyme?

I will admit, before last year, the only thing I knew about Lyme was to check my sons for ticks. My in-laws live in a tick infested area, where they are literally falling from the trees. When I mentioned my lapse of memory earlier in my post. Memorial Day last year, we were hiking on the Eastern Shore of Virginia, they were falling everywhere. I plucked 4 of them off of me that I remember. Literally, 10 days after I had a lot of ear pain on the back of my right ear. My friend said it looked blistery and there was a dot in the middle. SHe helped me clean it up. I believe that this was the tick bite, as I had never experienced anything else like it.

It is extremely difficult living with the unknown. I find myself full of anger and resentment towards family, friends, doctors, and mostly myself. Countless times I was told by those closest to me that nothing was wrong, that I was just anxious.I find myself angry at doctors for not figuring this out yet. I am so angry and frustrated with myself for not being able to pinpoint what is going on.

Thank you for reading and again, I am sorry to ramble on and on. I think I really needed to just get that out there. If anyone has any advice or words of encouragement, I would certainly appreciate it.


#2

I don’t know where you are located but I would demand to see an ID doctor ASAP as this has been going on for quite some time. The Lyme tests are not always accurate but your last test was positive so you should be treated for it ASAP and not wait until Sept. Maybe drive to the nearest city / bigger hospital for treatment. It’s worth the 2/3 hour drive if you can see a specialist. I’ve had Lyme 2x over the course of 6 years. The second time they had me on Doxy for about 2.5 months which really didn’t do to much so then I was on IV drug called Ceftriaxone for 1 month. If Doxy does not resolve your lyme, the Infectious Disease Society of America’s normal protocol is to prescribe Ceftriaxone. (standard practice). There are Lyme Literate doctors out there and they treat Lyme more aggressively but I would caution you to see any of them. I ended up in the hospital for 5 days and I blame the Lyme Literate doctor. There is also another lab you can be Lyme tested called Igenex Inc, however; since your last standard Lyme test was positive, I don’t think it’s necessary to do another round of testing at this time but definitely recommend repeating the test after you seek treatment. Igenex testing is not as conservative as the Western blot / ELISA. I wish you the best of luck and drive to a big city where there are ID doctors experienced with Lyme treatment.


#3

Hi there retchim
Just click on Trickses’ avatar, and a short profile with her location will pop up. Handy trick, huh? Unfortunately, the members who moved here from our old site have blank profiles because they could not be imported.
Have a great day!
Seenie from Mod Support


#4

Thank you for your response. I am in the Hampton Roads Area of Virginia Beach. I am absolutely willing to travel and my doctor is working on that. They have to send my case over for review before they accept me is what I am told. It is a very frustrating process. I was still confused about this last LYME test. By CDC standards it still is negative. I only have 4 bands that are IGG and one band IGM. Unless I am missing something. I kind of feel like that negative is what is preventing me from getting in sooner. Thanks again for your reply


#5

Good Afternoon, please oarden my response being a bit short. I was infected years before I was finally diagnosed around three years ago and began treatment, YOU CAN GET OVER THIS. The same week of the diagnosis I was deserted by my wife, my creator got me through three years of treatment. Finally, two months ago my Doc told me he is pretty sure IT IS OVER AND OUT OF MY LIFE, for good. The disease bacteria nest in the brain, and can cause the psych symptome you describe, also it colonizes and causes problems in the skeletal, muscular and digestive systems as well the Nurosystem.
A;so it can create a defense called Biofilm for iteself, making it both invisible and impossible for antibiotics to destroy when detected while not using biofilm defense.
The only accuratre test I know for Lime is the one I had called the Lyme immuno assay by immunosciences lab. Antibiotics only offer temp symptom relief, you my want to investigate something called LDI or low dose immunotherapy injections. They are small injections, for me every seven week, for two years, spanning longer between injections as you heal… Basically, your body will form its own hybrid defense system to kill the disease. It takes a while, but i can tel you it feels GREAT to be able to weight train, work and feel human after so many years of the unknown- I GET IT.
I prey this helps you a bit.


#6

Yeah the anger is tough. I’m dealing with the same thing - going to so many doctors asking them to help me, telling them something is wrong but nothing definitive ever coming up. I had a doctor caringly look me in the eyes and say “you’re bigger than the pain” when I said I’m having trouble walking. I wanted to smack him in the face and say “I was on a waiting list to see you for a year, I am in so much pain my life is falling apart, I’m coming to you to actually help me and all you say is I’m bigger than the pain???”. I had a handful of other hair pulling interactions with stumped doctors making me feel stupid or family members making me feel like I’m making it up.

I also hate showing that I’m in pain or not feeling well - so in public I always slap a smile on my face, put on makeup and grit my teeth through the pain, so I always get the “but you don’t look sick” response.

This whole process has sadly made me lose a lot of trust in doctors. I know they’re not all bad, Lyme is the great imitator, and a lot of our symptoms mimic so many other things, and so much of what we have doesn’t show up on tests, so I don’t blame the confusion - it just seems like the medical industry isn’t at a place where it can really support and recognize Lyme easily right now. I mean, the fact that so many Lyme doctors and Lyme treatments aren’t covered by insurance says that even the insurance industry isn’t supporting us yet.

I think we’re on the cusp of things changing for the better - it seems like Lyme is becoming a more recognized epidemic, short term disability is recognizing it, more and more people are getting it and becoming familiar with how debilitating it can be. I think it’s just a matter of time before we really have the medical and societal support we need. Unfortunately it’s just not now.

But, at least we’re not dealing with this 20-30 years ago.

It’s not your fault that you have this, and if doctors who literally do this for a living didn’t know you had it you can’t expect that you somehow magically should have known. And there are a lot of people who are pretty sure it’s Lyme but then the tests come back negative or the doctors tell them they’re wrong - so it’s a really difficult thing to figure out. The good thing is you pushed for yourself, you’ve been a great advocate for yourself, and you found out what it is - you’re doing all the right things. All the work you’ve done up to this point has been right cuz it’s led you to the right answer! So good job! :slight_smile: Hang in there!


#7

Sorry just re-read your post and realized my response isn’t really what you’re looking for. Lyme brain! :slight_smile: Hope it’s still somewhat helpful.


#8

XOX-- thank you for your reply and encouraging words. It is exactly what I needed. :slight_smile: I read your story. I wish you the best with your treatment!