OT: New to Group, Navigating Life with Multiple TBDs

[Guest guest]

Hello Fellow LD and TBD Sufferers.

I'm fairly newly diagnosed (2009) with LD, Bartonella, Babesia, plus EBV, Mycoplasma, etc. etc. etc., though I've had these beastly new millenial plagues since 1997 when my health began declining in pregnancy, after I had mysterious multiple bullseye rashes from bites from deer flies and mosquitoes -- and, yes, my daughter of that gestational grace was also recently diagnosed with LD, at my request based on history. Incidentally, I am (or was) a seasoned nurse midwife and family nurse practitioner who self-diagnosed myself, only to be ostracized by my medical peers who adamantly denied that Lyme disease even existed in our area -- and still deny this reality to date. "It was probably stress." I did have a full plate with family, career, and school.

Unaware of the latest on, and truly ignorant of, LD and TBDs ramifications, I went on, muddling through life, finally losing cognitive functioning while at the completion of my PhD program, preparing for the third and final candidacy phase, studying advanced practice nursing and health policy. During the interim of my last pregnancy, to present day, multiple bizarre, unexplained problems developed, culminating in a "complex migraine" cerebellar stroke in 2006 -- unknown etiology after extensive work-up, four months after I had a huge (7cm) classic bullseye after working in our garden, ironically on September 11.

I was immediately admitted to ICU for severe cellulitis, given IV Rocephin, to which I had a severe anaphylactic reaction (though looking back, was probably herxing), and, again, after asking to be tested since I had an "obvious bullseye," was told that Lyme disease was not in our area, that I probably had "poor healing from diabetes" as my weight was escalating beyond proportion, despite healthy foods and lifestyle (now learning this is classic of Human Babesiosis; besides, my glucose tolerance test at the hospital was 80 - hypoglycemic!).

Only in the process of trying to get to the bottom of this "medical enigma" -- a diagnosis that began to make me nauseous, and for which I was labeled a "hypochondriac," did I find a turning point in seeking health care that opened the door to obtaining answers. But I had to fly across the nation to get a clue, after seeking a "second opinion times seven" with a specialist on "detoxifying the body," which was just securing the first piece of a complicated puzzle!

I insisted to be tested for LD when I returned to my primary care "stroke specialist" after I was convinced that this was what the problem was all along. With a CD 57 of 16 (1%), I scurried to search the internet as I was not getting answers from the experts, and my treatment options given were dangerous based on my history and severe allergies. I had three children to raise, so death was not an option! Discovering the petty battle of the century, I sought care with a LLMP, successfully, but only which came after several initial refusals to care -- "not right fit, too far to travel, case too complicated," etc. Testing was blatantly positive for seven bands, plus positive FISH for Babesia, and by Quest Lab, which I learned was a rare discovery, but a welcomed blessing to direct my path.

Mulitple system damages, permanent disabilities and complications, as well as multiple chemical sensitivities have precluded my options for treatment. Furthermore ,during the process of eliminating etiologies of stroke and being symptomatic during detoxification and allergy elimination diets, reintroducing wheat, which made me violently ill, I was diagnosed with Celiac Disease (complicating absorption issues due to permanent damage to the ileum). My brain function is limited so I have had to rely on others for my healing journey. And, as I read in one of the Lyme resource self-help books that I purchased from BioMedPublishers, I looked great -- I shed 90 lbs. during my compliance with medical detox treatments, gluten free diet, and allergen control -- so my prevailing practitioners attitudes of "what the hell is wrong with you?!!" did nothing to help my case!

With self-direction, retention of some medical knowledge, and great support from my husband, we found help in NY, where my daughter and I travel to frequently, with the generous help of Angel Flight NE, and we are now on the road to healing, precarious as it has been, and challenging as it continues to be, under the circumstances -- medically, socially, financially, personally. Only the affluent can afford the treatment costs with the politics and policies determining outcomes for TBDs! (If I only had a brain!!! I would love to go to Oz to get mine back so I could resume my health policy work and fight for fair care and just protocols for those suffering with this terrible and devastating disease process which affects every aspect of humanity, though denied and perpetuated by the very individuals whose ignorance is replicating ignorance.)

As for treatments endured thus far, my daughter was given a course of Azithromycin, followed by Cowden Protocol -- just completed, and is doing fairly well, but has begun to feel tired and achy again, only a month off herbs. After completing six months of both Cowden and Zhang protocols, simultaneously, I have had a more pronounced relapse of crippling fatigue, moodiness, disorganization and brain fog, among many other symptoms. Since antibiotics are out of the question, as well as gluten free treatments are almost non-existent (without tapping into loans for compounding prescriptions!), my options are limited. I have since restarted the extended Zhang protocol, and at higher doses, discovering Bartonella in the challenge test described by Dr. Schaller in his new book, Babesia Update 2009 and Bartonella: Diagnosis and Treatment, along with having the classic dermatologic signs of Bartonella, but

dismissed as "aging." As a note, I suspected having Bartonella with my severe, knife-stabbing headaches and strokes (yes, I continued to have microvascular strokes, causing permanent visual damage), but the tests were "negative," which I have learned is common since Bart destroys the immune complex identification network to detect and fight body invaders.

We press on, one day at a time, and have done so in our isolated and displaced rural and LD/TBD-ignorant community, not just with medical experts, but with everyone, many not opened to learning truth -- and obviously not limited to rural folks. But such is our fate, and we live with it, trusting good will come of it all, forgiving those who have contributed to our predicament. Taking our health into our hands, which is the only reason for having survived thus far, will run its course, as abilities and resources are limited. In reading the stories of others who are living with Lyme and co-infections, I have been directed to this forum for hope and help in healing. I share our story, as well, to solicit feedback that may be yet another turning point to return to "living well," not merely existing. Your comments are welcomed and appreciated in our quest for healing, and if not healing, then co-existing with the

parasites and microscopic invaders within. Until then, peace in chaos!

Living with LyME.