I have been getting increasingly servere symptoms since 2012. Started with gi issues then chronic bacterial infections that even led to pid once. Last year I started feeling fatigued on and off and had constant swollen lymphnodes in my neck. By the time I got diagnosed sept. 2014 I had servere neck back chest and jaw pain. I have increased liver enzymes but am negitive for hepititus a b and c. I see fireworks when I close my eyes at night. I have been on doxycycline for 30 days and my symptoms are not improving. I was a completly healthy 24 year old before this all happened. The doctors do not seem very knowledgeable in lymes as I had to lie and say I remembered getting bite just to get a lymes test. I could use some support and advise. For 2 years until diagnosed I was treated like I was making my symptoms up due to not being sick all the time. I have even questioned my own sanity. Not that I have a diagnosis I am still at a loss for a cure to my symptoms.
So how were you diagnosed?
I'm really confused. You had a PID, followed by symptoms consistent with Reiters Syndrome, and Chlamydia wasn't ruled out? (these all go together BTW)
Even if lyme or chlamydia or a passing comet has caused your symptoms. You need to wrap your mind around the the idea these things are only a CAUSE. If you get bit by a dog, and then you shoot the dog you have a dead dog and still have the dog bite.
Post-treatment Lyme Disease Syndrome is just that POST treatment. Your Lyme Docs are often believing that shooting the dog will fix the dog bite. An entire industry has sprung up around the idea of fixing the Lyme, and you will get better. They will suck money out of your pocket fixing the Lyme until you have no money left OR the disease as it most often does fixes it self over time.
The disease what ever it is, has likely caused some damage. You may recover from that damage, you may not. You may be faced with treating some of it long term. I don't mean to be debbie downer but it may be that treating the fallout is where it will go.
I have a question about the fireworks you see in your eyes, are these problems in one Eye or both? The reason I ask, is that my retinal specialist is one of the doctors who pushed for my limes testing. I had a light show going on in one of my eyes and extreme pain in the Eye. My retinal specialist said that only a few diseases of the eye present in only one eye and lime disease is one of those. I also was misdiagnosed for a year and a half. When limes was first diagnosed I was put on oral antibiotics six weeks total of doxycycline. This gave me some relief from the headaches and pain in my face but not much else. At that time my infectious disease specialist decided to put me on IV antibiotics for 30 days. I guess I should backtrack and first state that I did have a spinal tap which indicated that my limes disease had crossed the blood brain barrier and was in my brain and spinal column. I had meningitis and encephalitis. After the 30 days of IV antibiotics my quality of life improved greatly. I went roughly a year with no more antibiotics. Then the symptoms started to come back. I again lost my ability to speak, find words, walk, and had a terrible mental fog. My new neurologist put me on low-dose long-term antibiotic therapy which I have been on now for roughly 3 months. I again find myself with a quality-of-life.
I have other issues with pain and nerve damage but those are manageable with different therapies and drugs. The neurological issues with my speech my ability to find words, short-term memory loss, Mental fog and a change in my gate which causes me to walk off to one side and fall over a lot were more important issues in my mind to treat.
I hope that my sharing has helped you in anyway. This is a long journey with no quick fixes.
Michelle
To answer any confusion tj1 posted, because of my age everyone seemed convinced it was an std. I got tested again and again for every std that exists. Negitive everytime. I actually recall being very frustrated that no one could seem to think of other possibilities other than an std. It is very uncommon but possible to get pid from bv. Because of my immune system being lowered due to lymes (that I didnt yet know I had) as well as having 6 rib fractures I actually got pid from a bacterial infection NOT any std. My blood work on a cbc shows normal other than high lymphocytes. To answer you michelle, about your question about seeing foreworks at night. …it is in both eyes and only when I close them to go to sleep . Other than that I have no vision problems and do not even wear contacts or glasses. I have no yet been to an eye doctor but as of now my vision has not been effected. Thank you for sharing your story with me. I believe it is a long term struggle with maby people who have been diagnosed with lynes. From what I read I believe it is much harder to “cure” if the diagnosis takes a long time to get. Best of luck With your ongion struggles with lymes. …does anyone know what secondary bacterial infections can cause the symptoms I have been having?!
To clarify: this summer I got very sick for 1 week. So sick I couldnt get out of bed. I mentioned to my mother that I could feel my chest and Stomach vibrating and was seeing fireworks at night. Those symptoms were more specific to lymes so I asked my primary care physician to test me for it and my first test for lymes came back positive.
which tests did you have? Actually you can get pid from Reiters which is secondary to Lyme. High lymphocytes are certainly indicitive of something autoimmune as well as inflammatory. Inflammed lymph nodes also point that direction. Heres the thing by the time reiters occurs (actually its now called Reactive arthritis) the organism or organisms that have caused it are no longer active. A negative screen means nothing. You can do dna testing, which is meaningless in that it only indictes exposure, or successful ABX treatment, not active treatable disease (although there are more than a few making a lot of money treating inactive non-treatable disease) Nobody is picking on your age. You got an infection that does not occur from a systemic cause. There is a version that can be caused from an imbalance of normal pelvic bacteria. Its not uncommon with swimmers and tennis players.
In any event you are having problems that may or may not have had a bacterial cause. Is your current blood work (while on the doxy) still elevated?
I would certainly seekout a rheumatological consult as well as some opthamologic testing to eliminate both occular Sjogrens and occular rosacia. Your best bet would be an occular immunologist.
High lymphocytes are significant as its an indication of b-cell and t-cell activity. This most often has an autoimmune cause. Once the sinister stuff is ruled out, there are a number of treatments that will have you feeling better pretty quickly.