For approximately 2 months, I have had constant neck pain, stiffness in my neck, fatigue, on-and-off fevers, headaches, and I am now experiencing tinnitus and seeing floaters. This all started off three weeks after what my family doctor thought was an outbreak of shingles. I had a large raised, red rash on my right hip without pustules for about two weeks; a small scar is still present today. I was prescribed Acyclovir, and I took this for two weeks and the rash went away, but a swollen mass appeared on the back ofthe right side of my neck, similar to a swollen lymph node. The mass was a soft tissue mass, and it occurred about 2 in below the base of my head and just along the vertebral column. I saw two ENTs, each with conflicting answers: it is and isn't a lymph node. Both put me on antibiotics and told me to follow up with a new doctor.
I started to have spasms in my neck, and the mass became larger and began to hurt to the touch. I also started running low-grade fevers, I became fatigued, and my throat became pretty tight from time-to-time. About three weeks ago, I was instructed by a doctor to massage the area in case it was a muscle knot. The next day, the mass was much smaller, but I began to have a mid-grade fever, sweats, fatigue, and the tinnitus and floaters began and have not stopped.
The symptoms have persisted and so bad on occasion that I brought to the ER three times (twice admitted), and tested for Lyme's, Rickettsia, Q Fever, viral/bacterial meningitis, Vitamin D deficiency. All tests have come back negative except for Vit. D deficiency. I have a B12 deficiency and Lupus test pending. I have had an MRI and CT scan of my neck, and I have had an MRI of my brain.
The doctors say my bloodwork is ok. I have had 3 CBC count/Diff over the course of two months, each test having more and more flags. My RDW has been consecutively low, high CO2, Monocyte % and # are consecutively high and increased. I have also had one high basophil count on one occasion, but my latest was normal. My MDC and MDV both were low. I have also had high T-uptake.
The mass on my neck is small (3X7x9 mm), and can only be seen on the images of my neck. I have asked the doctors about cancers and all have said that they doubt it, but refused to biopsy the small mass. I am still experiencing headaches, stiffness, floaters, tinnitus, fatigue, and pains in the neck and back of the head.
I have seen a neurologist, infectious disease doctor, four ENTs, and not one of them can diagnose the issue. Some have told me that some things have yet to be discovered, and sometimes a diagnosis can't be given. They have only masked the pain with pain killers (Vicodin, Zofran, Zonegran) and anti- nausea medications. I have completed 3 rounds of different antibiotics without success. All doctors have refused to biopsy this mass in my neck given that it has since decreased in size, but my symptoms have gotten worse. I do suffer from anxiety, but that seems irrelevant to what is happening to me. Please help me.
1. What other tests should I have the doctors run?
2. Am I seeing the wrong kind of doctors?
3. Can Vitamin D deficiency cause these issues?
4. Are there any other tests that should be considered?
Although Lyme mimics many other things, your symptoms are still consistent with Lyme. Unfortunately, many doctors were told many years ago that the blood tests for Lyme are always accurate especially when they are negative. Unfortunately, that has proven untrue, with many people suffering for years with undiagnosed Lyme because they tested false negative. Doctors who treat a lot of Lyme estimate between 30-60% of actual Lyme patients test false negative. Many of those go on to develop severe and debilitating disease due to delayed or lack of diagnosis and treatment.
Ask your favorite doctor if s/he will order a Western Blot test for you. Lots of people test negative on the screening tests, but also show Lyme specific antibodies on the WB, even if it isn't CDC "positive." The CDC surveillance criteria was not designed to catch all cases, but rather to produce a bare minimum of false positives. It is very unfortunate for us patients that somehow it evolved into a disgnostic absolute. Ideally, you should get tested at IGeneX, a specialty lab that does more advanced testing.
You can Google "Tom Grier Lyme" to read more about Lyme testing. He is a scientist who writes about it and advocates for patients.
There is a lot of conflict in the medical community about Lyme with many opposing beliefs. I encourage you to do some research to see if you think you might have Lyme. Many of us with late stage Lyme end up figuring it out for ourselves after numerous doctors are stumped, leaving only Lyme Disease as a possibility This medical document might be helpful for you. It was enormously helpful for me.
Try to find a LLMD (Lyme Literate Medical Doctor) near you. That is what we patients call doctors who follow ILADS diagnostic and treatment protocols. You can contact ILADS on their web site for a referral. Local patient support groups are also really helpful to find a doctor who knows how to make a clinical diagnosis and which coinfections to test for. If you got one of the several other nasty diseases that ticks also carry, it could cause additional symptoms that confuse your presentation, as well as interfere with Lyme trastment.
Do you have extreme fatique? Have you ever had mono? Also have you been on oxymacillin. My experience occurred at age 41. Pretty late for Mono but that is what I had. Seemed so achy with sore neck and lump in same area as yours apparently. Had a rash from Penicillin that changed as I developed the Mono.. Fever,sweats and eventually very severe weakness. Unable to clinb stairs though dragged myself up to bed. Admitted to hospital and took weeks to return to good health. My throat became tight due to the allergy to penicillin. I imagine you are aware that such an allergy causes bronchospasms that I too described as tightness. I learned first hand that such a symptom is an emergency. Apparently this medication can go hand in hand with Mono! Please write back if you see any possible connection abd hope you feel improved soon.
Thank you for responding-your comments are very informative. to let you all know what other tests I have completed, first, I have been tested for mononucleosis, and this was negative. Also, I have had a lumbar puncture to test for meningitis, and this was clean as well. I have NOT been tested for a heavy metal toxicity, which might be something to consider. I am a fisheries biologist, so I am exposed to a lot of the nasty biting bugs and stuff outside, so this may be a good idea.
I accidentally posted some incorrect information about my bloodwork. Over the course of a month, my CBC count/Diff results have had more flags popping up: Most recently, I had low hemoglobin, low hematocrit, high MCV, high MCH, low RDW, low MPV, and high # and % monocytes, and Vit. D deficiency. I was told by the infectious disease doctor that this is likely a cause of a bad viral infection and that I should not be alarmed about any cancers...
As far as the Lyme test that was performed, the analysis was a Lyme IGG/IGM AB test that resulted in a negative (<0.91 index score). I was also tested for West Nile which was negative. I am waiting to hear back on the Lupus blood test and a B12 deficiency test.
The strange thing about the illness I am dealing with is that the symptoms have changed over the course of time. First, I had what my family practitioner thought was shingles on my left hip, and the large raised rash never blistered, but it hurt and itched but burned. Two weeks later the mass popped up, and the was almost gone after being treated with Acyclovir. The mass was painless, but after 4 days, I began running a fever, my right side of my neck and shoulder were extremely stiff, and I was really tired. These lasted for about a month. My dad, was instructed to massage my neck, and the next day is when the tinnitus and floaters started. I was still really fatigued, weak, and running low grade fevers. However, the mass went down in size... I am now having some tightness in the right side of my neck ( but it is much better than before), pressure pains on the right side of my neck and inside my right ear, floaters, tinnitus, fatigue, headaches (migraine-like), occasional pins-and-needle pains in my nerves in these areas, and some nausea. The symptoms seem to be more flu-like. Recently, my skin has also started itching, but this might be unrelated.
I have seen a neurologist, and she could not find anything from my MRIs that could be diagnosable. She referred me to an ENT, but she did schedule a Romberg's test to be conducted in three weeks at the soonest. The ENT refused to perform a skin aspiration/biopsy of the mass on my neck, but wanted me to take a hearing test for tinnitus, and he referred me to a physical therapist for neck pain. The infectious disease doctor has been the most helpful, but cannot diagnose anything up to this point because a majority of the problems are internal. The infectious disease doctor told me, " Sometimes people just have symptoms that they must live with for the rest of their lives, and I hope you are not one of these people." I am considering seeing the immunologist next.
Ultimately, this has been a frustrating process, and I am being treated as an over anxious person that has made this all up.
the Romberg's test is something you can do on your own in 1 minute... look it up on Youtube to see how it's done. My idea is that if you're positive there's possibly a auto-immune reaction affecting your optical nerves and the rest.
I don't know what it is but there might be something going on with viral pandemic like swine flu or bid flu whatever. that would be compatible with low hemoglobin and maybe it affected your kidneys too.
you should also check liver function, creatinine, ultrasound to the kidneys and liver, complements system.
Unfortunately, the results for mono came back negative, and my doctors have pulled me off all antibiotics. I must say, I was feeling worse on Doxycyline. I felt more fatigued, likely because it is linked to depleting Vit B12. I am still awaiting some autoimmune results, but I still have no answers. I hope you are feeling better from what you are dealing with. Thanks for responding to my post.
Oh you are welcome for my reply. The new information on the importance of Vit D may be of help. Amino Acid lab test is closely related to B12 use.
GRF labs, as well as creatinine. are significant especially if you are over 50, for kidney function..I guess you know that kidney disease is usually accompanied with swelling invarious site of your body. Sounds like you are wise in pursuing a diagnosis. I am following this forum and hope to read about your return to good health!
The floaters are almost gone, but the mass in my neck is coming back again. This has been so strange... I get bad headaches centralized to the back right of my head and extreme tightness in my neck... I have seen another ENT and he referred me to a physical therapist and is not too concerned about the mass.
I don't know what to say.. seems like it's an infection that triggered an immunological problem. the good thing is that WBC are high not low like the Infectious disease doctor told you there are no signs of cancer.
If this thing is disturbing your central nervous system you won't be perfectly fresh and lucid either, you need to slow down a bit.
You must accept the situation first, before you can even begin to try and fix it.
I am going to post this to as many undiagnosed issues as possible, because this is so unknown in the world... So many of us have lived so long with undiagnosed "diseases".
After a half-a-dozen Dr.'s, blood tests for every disease, x-rays, cat-scans, and MRI's, nothing is "wrong" with us! WHAT? Tell me why I can't walk!!!! Someone - PLEASE!!! My life is ruined, and it's so lonely on the couch watching life go on with out me! In time, the Dr.'s start to look at me as if they had finally come to realize it's psychosomatic, because there's nothing officially "wrong" with me! In fact, the Rheumatologist I waited 2 months to see, said that the head tremors was from stress, and I should see a psychiatrist!.... That will be $350 today!
My symptoms would come and go with severity and length of time, but they were getting more and more debilitating. My thigh muscles and knees were so weak at times, that I could barely stand or walk with out help, or a walker and wheelchair. I had head tremors like Parkinson's, and full-on body quakes that would vary from 30 minutes to a week. Some days I could walk great, then, BOOM!, I'm down again. I only felt intense pain at the base of my skull and upper neck. Sometimes I would have extreme pain in my right hip joint.
What became my solution and abolishment of all my symptoms that the Dr.'s don't even know about? It's not pills or nutrition ~ it has to do with the neck bones! What I'd like to see happen, is after all their tests come back negative, the Dr. should ask, "Have you ever been in an accident, or have fallen hard?" (Which is most common, but other things could have caused it). The next statement..... "You need to see an Upper Cervical Chiropractor to see if your neck bones, at the base of the skull, have been knocked out of place. Many of your symptoms can be caused by the nerves being pinched off and unable to communicate to the brain."
And I'm not kidding! It can mimic; Parkinson's, Lyme, Arthritis, Lupus, MS, and even seizures can happen!
I'm here to promote the awareness of the practice called "Upper Cervical Chiropractic". My x-rays revealed that my neck is actually curved backward, which is what had caused the scoliosis in my back! And, of the 2 upper bones, one was tilted and the other was turning - pinching off the nerves that work my legs. It's been about 2 months after my adjustment, and I've have had none of those symptoms from that day forward!
Even if you have found that this is not the case for you, keep this in the back of your mind so that when you're talking to a distraught friend, you may have their solution! Youtube has some information on this....
All the best wishes, Gretchen
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