Friday, September 2, 2016

Experiences that Keep on Giving

Our world was recently derailed. My husband couldn't see well and went to see our ophthalmologist and in the middle of his appointment his doctor summoned his partner in to see what he saw. Not only did my husband have one of the biggest floaters the doctor had ever seen, he and his partner saw abnormal cells clustered in both of his eyes.  He was referred to a retinal specialist two hours away from us and his appointment scheduled only one week later, though it was postponed for another week before he was actually seen. My daughter took him to this appointment while I stayed behind to care for her two step-children. He needed a driver and I rarely drive that far.

I read about abnormal cells in eyes on the internet and made myself stop, as it was just too scary!! I hoped that his appointment being postponed meant that his problems might not be so urgent and I busied myself with sewing for my upcoming craft sales to make time pass faster.

The specialist confirmed the presence of abnormal cells and recommended a vitrectomy, a removal of the vitreous, in this case primarily for the purpose of  having these cells tested, but also to remove his floaters. The good news was that for many patients, removing the gelatinous fluid in the vitreous and refilling it with a salt solution removes floaters and improves eye sight; the bad news was that the abnormal cells could be cancer, though other inflammatory diseases produce floaters and abnormal cells as well.  We tried to focus on the positive, but it was a long six day wait for his surgery and we thought even more time would be necessary before we would get test results on the abnormal cells.

I began to realize that our medical histories have a way of re-cycling, especially if they are traumatic and what medical urgencies aren't? Our past experiences keep on giving and this is both bad and good. I sent my questions with my daughter when she taxied my husband to see the specialist. My husband's initial diagnosis was vitritis . Any medical word ending in "itis" means inflammation and being The Queen of Inflammation, I questioned if this could be caused by late-stage Lyme Disease as it causes inflammations everywhere as well as uveitis, an eye disease that can cause serious damage to any or all parts of the eye and includes vitritis, that only affects the vitreous.

Fortunately, his doctors all reported that the front and back of my husband's eyes looked to be OK. Lyme, despite its seriousness would be better than cancer, I reasoned, like reasoning had anything to do with what was actually happening in my husband's eyes! I was "reaching" as anything would be better than cancer! "Bargaining" is often one of the first stages of grief, and I seemed to be right there! We were all in shock about his eye issues and it was hard to imagine that our lives might be changed forever, or NOT. depending on the results of the tests they would run on these cells.

The retinal specialist wondered how me having Lyme had anything to do with my husband and told my daughter Lyme wasn't transmittable to another person. My daughter, having Chronic Lyme knew different.  She replied that she and her sister had acquired it from me in utero, and that it is thought to be potentially sexually transmitted as well, and why not, as it is caused by a spirochete, similar to syphilis! The specialist asked her to cite medical references to her knowledge but who carries such references in their head, especially as Lyme Disease causes memory gliches, especially details involving names and dates. He let her know that such facts were likely "bad medical science" and added that Chronic Lyme Disease is a very controversial topic, and that if he did test for Lyme and it was positive, he would be sure to refer my husband to a certified disease specialist who works under the CDC!

We are aware that the CDC doesn't believe that Chronic Lyme Disease exists, as they don't believe that patients who have had acute Lyme Disease and been treated still have active infection, but rather that they have gone on to develop an autoimmune disease that will no longer respond to treatment designed to kill off active infection. Doctors who believe in Chronic Lyme are called Lyme-literate doctors and they believe that if symptoms persist, it is likely due to active infection.There are studies that show this to be true, though I am no better than my daughter at citing references.

There was much to do to be ready for his surgery. We would get hotel reservations and travel the evening before, as surgery was to be first thing in the morning and we would stay until after he had his follow-up appointment the next morning to keep from having to commute the distance! His surgery would be done on an out-patient basis. My husband and daughter needed to take time off from their respective work and my husband needed to get a pre-op physical, pre-registered at the hospital, check with his insurance to be sure no prior authorization was needed and have a phone conference with the anesthesiologist's nurse. Our animals would also need care arranged for them. I was less busy and so I appointed myself the task of worrying, no matter that I know how useless that can be!!  Being a nurse, I find that my way of dealing with serious medical issues is to gather information and cross bridges before I come to them.  If I can cope with the worst, then I am well-prepared to deal with whatever I need to deal with. I do admit this does cause some unnecessary angst!  Did I mention that my husband is not the easiest of patients to care for? I simply added that to my worry list! I was then busier than either my husband or daughter!

Past experience, I have found to be a very strong teacher indeed! We have questioned whether or not my husband has Lyme before, but to date he has only been tested for Lyme through a hospital lab not as reputable and sensitive like the special Lyme testing laboratory, Igenex. Biopsies of affected tissues can be even more diagnostic than usual testing, as the usual Lyme tests can produce less than reliable results, especially with patients who have had Lyme Disease long enough that their immune system and responses are already damaged. Biopsies can offer an advantage, but I do have a way of forgetting that I am NOT the doctor!

From prior experience, we know that medical doctors are often limited in what they know about Lyme Disease, though I find it interesting that doctors, while unknowledgeable often are negatively biased and believe what the CDC has told them, never questioning that this information might be inaccurate. My daughter told me about the surgeon's response to my concern and I didn't look forward to future encounters with a medical professional that is not only NOT Lyme-literate, but one that is so negatively biased.

This specialist however came highly recommended by our trusted ophthalmologist and had seen my husband years earlier and it was also clear that there was some urgency to this situation. We didn't have time, nor the money to find another specialist, and we decided that any future questions would be made without reference to "the controversial topic of Lyme Disease".

Keeping my mouth shut would be a tall order for me when I have such strong opinions, based on my own experiences and those of my children.  I went thirty-eight years without a diagnosis and proper treatment and my kids were in their late teens before they were diagnosed. Sadly, our bodies had incurred much permanent damage before receiving treatment. Our medical issues and those of my children would have been much less had my past doctors been aware, tested and treated us for Lyme much earlier in the course of our illnesses. I am a loud and strong and very verbal advocate for Lyme Disease awareness and widespread education!  It is a disease much more prevalent than the Zika or West Nile Viruses and the disability and mortality rate more significant, though sadly its research less funded! Invisible diseases I have learned glean less notoriety!

My husband was called by the anesthesiology  department for an intake interview only days before surgery. My daughter and husband had indicated that my husband was allergic to sedatives and pain killers but my husband wasn't certain that they understood that they actually cause him to become apneic (to stop breathing)! I decided that perhaps it would be wise for my husband to be sure that he got his medical records from our local hospital regarding his last surgery to "drive home" this issue and prevent it from recurring!  Again past medical experiences were  re-cycling, and we were determined to use this information in a positive way! Doctor-to-doctor communication of facts can speak loudest. This is common nurse knowledge of my yester-years and this was indeed important enough to communicate most clearly!

Being concerned that everyone be "on the same page" we  also planned to verbally share this information with everyone before surgery including the doctor and anesthesiologist! All heard and the eye surgeon responded confidently explaining that he would "go light" on medication and asked my husband to trust that he would be kept awake, but safe and comfortable throughout surgery and promised to NOT over-medicate him. In turn, he added that my husband needed to communicate should he feel any pain. My husband's anxiety strangely decreased so much that prior to surgery he dozed without medication. He knew that my daughter and I were on his team and that I would do his worrying for him!! The doctor and hospital staff all did their part to perfection. The eye surgeon even pre-marked his eye to be operated on. Surgery in a large institution is anything but "holistic", but safe-guards were built into their system to prevent any errors! The transfers of care were done with open communication and their care was efficient and effective and the results were all good!

We learned from this experience that our processing was what was most important. Re-cycling all of our past medical experiences, we carefully sorted and talked about what needed to be communicated, and realized later that this contributed to the comfort and success of his surgery.  Possible complications were avoided!

By the morning after, the surgeon had the pathology report to give us.  There was NO cancer! It is likely that an inflammatory illness damaged my husband's eyes and my concerns about possibly acquired Lyme Disease were legitimate though his eye surgeon had his biases. He humbly admitted that he is NOT an expert on Lyme, and he and the pathologist decided Chronic Lyme was an issue best left to my husband's doctor to further explore. He indicated that often they never discover why the inflammation occurred and clearly without testing, I could understand why this was a common occurrence!

In the medical world when they don't know what causes something, they say it is of "unknown etiology". We did find out that this surgeon's main concern was cancer and the news of my husband not having that was a huge relief! I did feel bad that the opportunity to further test for Lyme Disease was not taken. My youngest daughter had spirochetes cultured from skin lesions she had, and my lyme was actually diagnosed through tests on my urine where lyme antibodies were found. If however, my husband had been tested for Lyme and it and found, this doctor would have been responsible to refer him to for further treatment and likely that would have been to "a certified CDC disease specialist" as he had indicated.  The irony of the situation, was that the specialist referred this issue back to my husband's primary care doctor, who just happens to be my previous Lyme-literate doctor.  This is the same doctor who was made to drop his Chronic Lyme Disease patients and no longer treat lyme disease (we think under threat of his medical license).

We are under no illusions that his own primary care doctor will further test or treat my husband for Chronic Lyme. He is at least very knowledgeable about Lyme Disease and is likely the best doctor to make decisions regarding my husband's future care. There is, of course, the possibility that my husband has some other inflammatory disease instead.

It is a fact that Chronic Lyme Disease has gotten a "bad rap" here in Vermont and elsewhere. My thinking is NOT paranoid. For those of us who have Chronic Lyme, we know that it both exists and lives-on in thousands of patients. While the CDC has denied this disease's presence, their denial doesn't eliminate this disease! It is also part of my medical experience that I have lost the best doctor I ever had, when they made him literally "dump" his Chronic Lyme patients and stop treating them.

He was made an example of in this state, and it does seem apparent that the CDC has been hard at work to be sure to "educate" other doctors that this disease does NOT exist. Their decision has made finding appropriate care very difficult to be sure and added much insult to injury for patients to be told that their illness was all in their heads, though their symptoms were often successfully abated when treated with long-term antibiotics by such Lyme-Literate doctors that respect that short-term treatment for Lyme is often inadequate!

It is a fact that our illness often does afflict our brains, as I found out when an MRI was done following my stroke. My brain is peppered with lesions that were there prior to my stroke. Likely my treatment had attacked the active infection in one of them causing much swelling and ischemia (lack of blood flow) around it. The swelling was treated and thank goodness the effects of my stroke were reversed.

While psychiatric care can be helpful, make no mistake, it alone doesn't treat an ongoing infection that may also affect the brain. Research has shown that patients treated with limited antibiotics often continue to have an active, and ongoing Lyme infection. Proper treatment is tricky business. Lyme Disease manifests itself in three different forms, two of which surround themselves with a protein that makes it hard to penetrate and kill off. Other forms of treatment are then needed in order to effectively "get at" and kill-off these mutated forms.

For those of us who have Lyme, we know it to be an illness that "keeps on giving". It often creates more medical problems, not only for the patient but can also be passed on to their off-spring in utero and/or to their spouses sexually.As patients we can feel its effect or the effects of our immune system trying to fight it off. It can "mess with our heads" through on-going infection or neurological damage. It can make us less tolerant of stresses or even normal activity and exercise and there are medical reasons for our heightened reactions. Living with it means that we are constantly challenged to take count of our energies both before and after events as their effects can produce delayed negative responses as well.

Being our own advocates whether it be Lyme Disease or any other illness that we are coping with, means that we ask questions and be actively involved. Those of us with serious chronic illness live in an alternative reality and will indeed surprise our medical care providers with questions and concerns "out of the ordinary". It is also important that we communicate our sensitivities as we are often more vulnerable than others undergoing similar procedures.

I also learned through this event that it is important that each doctor offer their own specific expertise and that we respect both what they offer and don't offer. While this doctor reasoned that the tests run on the fluid removed from my husband's vitreous are expensive enough that he felt other more common tests for Lyme Disease would be less costly, we know how hard it is to have opportunities to locate areas affected and have them biopsied. He later said that he didn't have expertise in Lyme Disease. I can only hope that he learned a bit about Chronic Lyme Disease in considering our questions. I reasoned later that if he had tested my husband and referred my husband to a "certified disease specialist under the CDC"  treatment might well have been systemic steroidal anti-inflammatories which would effectively suppress inflammation, but would also suppress his body's ability to fight any active infection, if present, whereas a Lyme-literate doctor would likely treat with antibiotics as well as other treatments to get at the mutated forms of  a possible active Lyme infection instead.

I do find it sad that our medical system is this political and that the patients are the ones caught in the middle,but it is a reality that I live with every day as a victim of Lyme Disease. We are, however, armed with knowledge and that is indeed powerful. Our surgeon at least showed our concerns respect by adding them to the medical report that will go to my husband's primary care doctor.  I am sure that the surgeon's life is simplified by effectively side-stepping or avoiding this "black hole" in medicine, whether that is his intent or not.  Lyme Disease is controversial and sadly Lyme will continue to be denied as the medical community is not about to confront the controversy that exists.  Doctors in this state, at least, are better off personally and professionally if they avoid any testing or treatingthis disease!

(For those readers that question my paranoia regarding Lyme Disease and its treatment, I respectfully suggest they read Plague by Judy Mikovits.  It is a true life story about the politics involved in controversial medical diagnoses of ME/ Chronic Fatigue Syndrome, Autism and other such autoimmune diseases (including Lyme Disease) and their  possible links to retroviruses and immunizations.  If you don't think politics are involved in medicine, think again! My doctor was luckier than some in that he is still practicing medicine with some limits imposed on him, whereas many have been permanently put out of their careers, "plagued" with ongoing lawsuits to threaten them, or have mysteriously and suddenly been found dead. Their personal and/or professional losses have become very real losses to their patients as well! Going without their care is a great loss indeed! Many thanks to those Lyme-literate doctors who dare take the risk to themselves professionally when they treat us!)