Excruciating flank/back pain

So my DNA Connections PCR test came back positive for 2 strains of Lyme disease and Babesia. I’ve had excruciating flank/back pain for almost 5 months now. Been to ER (4 different hospitals) 8 times and admitted to the hospital twice since August with no actual long term relief. They tried morphine, lasted about an hour, all sorts of pills (Gabapentin, hydrcodone, oxycodone, backlofin, cyclobenzaprine, carisoprodol, Motrin, and Tylenol). The last ER doctor put me on IV Dilaudid and Valium which was great, got pain from 10 to 6, but then the admitted doctor canceled and changed to 325mg Tylenol and topical Lodocaine, I became hysterical when the pain came back and the new doctor threatened to call security; worst experience of my life. Through an anesthesiologist I’ve tried IV Ketamine and IV Lidocaine, although these gave relief while I was receiving the medication, once disconnected the pain would creep back in to the same intensity. The pain was so excruciating that I literally wanted to die everyday, crying, screaming, begging God to just let me die. It got so overwhelming the last ER/hospital admission resulted in me being Baker Acted at the VA hospital. Fortunately they put me back on Lyrica which is at least masking some of the pain, from a 10 to a 7. We’ve spent over $20k already trying to figure out what’s happening to me and I just received my positive Lyme disease test yesterday. I have all the usual symptoms but still baffled by this flank/back pain. It feels like a twisting, burning, electrical pulsing sensation worse in my right flack and lower back that radiates up my back to my neck. Since taking the Lyrica I’m no longer experiencing electrical shocks throughout my body or the uncontrollable, violent shaking. I have an appointment this Thursday with the Cleveland Clinic (in south Florida) to see pain management and Friday at the Mayo Clinic (Jacksonville) to get Fibromyalgia and pain medicine consultation. I’m trying to also get an infectious disease appointment on the same day as well but haven’t heard back yet. Any thoughts on the flank/back pain? Do I continue to go to the above consultations (costing nearly $2500) or just look for infectious disease doctor? My functional doctor (out of Utah) is a Lyme disease expert but unavailable next week so I’m talking with his PA on Wednesday regarding treatment. Just doesn’t seem very compassionate that they aren’t immediately communicating with me regarding the test results/treatment since I’ve already been suffering the last 5 months! Particularly since I feel the disease progressing and spreading throughout my body.

Thanks so much for your reply. I’ve had multiple MRI, X-rays, and CT that all show “normal wear and tear”. I’ve reached out to 2 doctors near me that claim to treat Lyme disease and hopefully I hear back from them next week. I’m currently doing detox (have been for over 3 months: biocidine, Duo detox, IgG, Pectasol-C, magnesium), fish oil, probiotic, multivitamin, sublingual Ketamine, Lyrica, and cyclobenzaprine. While admitted in the hospital this last time (1/4-1/8) I specifically asked the doctor why he refused to run any infectious disease or autoimmune tests and his response was that my blood work didn’t show any signs of infection so I don’t have these issues. One of my CBCs showed low lymphocytes (below normal range) and high neutrophils (above normal range) but doctor said these fluctuate day by day. My blood pressure was consistently below 100 and body temp below 98.

Oh, and my usual BP is 90/60 and my usual body temp is 97.0. The doc was right that those white blood cells do fluctuate day-to-day. A basic CBC is not a screening test for Lyme. You need someone who knows what to order and how to read the results, but also ... you already have a positive test. You can just start treating. There are no PCR false positives. Lyme creates immune dysfunction, so you do not mount a defense against it. (Crafty.) So tests that look for elevated white blood cells and tests that look for antibodies often aren't useful, i.e. lots of false negatives. Furthermore, LLMDs consider Lyme to be a clinical diagnosis - that is, based on signs and symptoms, not just testing.

And I should have said this first thing: No to the infectious disease doctor! Don't bother. This is not in their purview. ID specialists believe that Lyme is an acute infection easily curable with a short course of oral antibiotics. They believe there is no such thing as chronic Lyme. They rely on the CDC criteria, which never were meant to be diagnostic (they were intended for epidemiological tracking) and which are based on a subjective and highly flawed test. Look for docs with ILADS affiliation and who have experience treating people who have chronic or late-stage Lyme and co-infections. Many will specialize in functional medicine, integrative medicine, or some other more holistic specialty. This forum is filled with people who logically assumed an ID doc made sense for Lyme and were terribly disappointed. The one I saw seemed like a great doctor in many ways, but he displayed 100% mainstream willful ignorance when it came to Lyme.

Saraeli I’ve tried acupuncture, seen an Aztec medicine man, tried massage and hyperbaric chamber therapy. All seemed to help the slightest initially then didn’t work anymore. A functional doctor in Utah ordered the PCR test and is technically treating me, with a doctor in the same group in Florida (where I live) actually writing any prescriptions I need. The Florida doctor wasn’t a specialist in biotoxins, which was initially what they thought was wrong with me due to a contrast sensitivity test, hence the switch to the Utah doctor. However, the Utah doctor is difficult to get a hold of; his PA is calling me on Wednesday to discuss treatment although they called me on Friday evening to tell me the test was positive. Why tell me that and not start treatment? Seems cruel to me. But I guess I can’t complain since the pain is no longer making me wish to die! I’m grateful to be alive and will continue to fight for my life back!

I don’t doubt biotoxins in my body because I was exposed to a “sick building” situation for 3 years (2001-2004) when I was in the military, to include high levels of carbon dioxide that displaced oxygen resulting in the lack of oxygen. I’ve removed all chemicals from my home, added a whole house water filter system and UV light system on the AC system. We tested the house for mold and radon, both negative.

“ No to the infectious disease doctor! Don't bother. This is not in their purview. ID specialists believe that Lyme is an acute infection easily curable with a short course of oral antibiotics. They believe there is no such thing as chronic Lyme. “

Just want to clarify - If the ID dr is lyme Literate (as is the case with Dr J in DC) then he/she is a good choice.
But an ID Dr who isn’t knowledgeable in lyme diagnosis/treatment is useless (which is most of them) .

Benelli-

What ever direction you go, the pain will be there for a while and maybe longer.

For now, something that manages the pain would be welcomed Im guessing.

Heard about liquid DMSO? That is great for driving in natural healing topicals. Penetrex cream has all the best healing topical combined in one application.

Applying this on ones back takes creativity. If alone apply in this order:

1)Amazon has back applicators for body lotion that works for the Penetrex (Amazon or Walmart). Apply this first.

2)Then use a natural horse hair 1" wide paint brush lightly dipped in a shot glass of DMSO over the Penetrex.

It stings/tingles for 10 min, but works and dries in 1/2 hour.

DMSO draws anything on the skin into your body, must be clean before use and during dry time.

This combination helps better than any topical solution out there. Wish i knew about it years ago. I have donr this with magnesium gel/cream too.