I haven't posted much and my last blog update was in May of this year. I wish the reasons were because I was enjoying a recovery and had my health back, but it's not. I now join the ranks of some of the others here who came to this site about the time I did.
Last week I had Bioenergetic Testing done which indicated I have: Bartonella Henselae, Babesia Nosodes, Mycoplasma Fermentes, Borrelia Burgdorferi and high levels of systemic yeast (as well as EBV, HHV-6 and CPN) -- "my elephants" and reasons for not recovering.
My doctor who's been with me on this journey abruptly left the end of June (health reasons) leaving me in a panic. He did test me for Lyme in 2007, but it was before I started ABX; and, since I have probably had it for a very long time (I'm guessing over 25 years) it's sero-negative. As an aside, my ex-husband, with whom I camped and fished with years ago was (last I heard) in a wheel chair "diagnosed" with Parkinson (I'm certain he's probably misdiagnosed)
I was able to be accepted by another doctor in this clinic and am fortunate as they treat holistically (bio-identical hormones, glutathione IV's etc.), but am unsure of his willingness to give me carte blanche with antibiotics as I have had over these years. Everything just seemed to fall into place...so, with the support and encouragement of a wonderful friend I have an appt. with an LLMD who trained under Dr. Burasscano on 8/30 and am trying to maintain until then.
I have been two months without ABX ( I did take 3 days of Azith to see if my knee pain would go away) and am going somewhat downhill, joint pain, brain fog, weakness, major heart palpitations. The fatigue has gotten progressively worse.
I may have brought the CPN titres down, but it seems I was keeping the other co-infections simmering..... not enough to kill them off but rather at a "low simmer". Sigh.
I have had "windows" of wellness over this time period but nothing has been static for more than a few weeks at a time. I'll be honest, I am very frustrated... I still have severe fatigue, bowel/digestive issues, adrenal fatigue, have developed weird skin manifestations, as well as what appears to be Rosacea on my face, breathing/allergy problems and all the other ailments listed for CFIDS/FM.
On a positive note, my CPN titres (IgA and IgM) have dropped to normal after 4 years of ABX. My IgG has dropped considerably, but is still "high".
I reflect back on how difficult this treatment was for me for about two years - it put me in bed, a wheel chair and pretty much housebound. I kept plugging away thinking "next month I'll be better"..... It all makes sense now... damn elephants! When I find out more.... I'll post again.
In the meantime everyone, be well and blessed.