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Lyme/Babesia/Bartonella/morgellons treatment

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My name is Ashley Friend and I am a sufferer of Chronic Lyme disease and suspected mysterious disease called Morgellons, as well as endometriosis, adenomyosis(had a hysterectomy for this), urinary retention, pelvic floor myalgia, EBV, Parvovirus and past CMV virus.

Currently there is no cure or medical help for Morgellons disease that can be provided by a "normal" doctor. It is an emerging systemic illness that is currently affecting thousands of people across the world. Morgellons is a poorly understood condition and the bacteria 'borrellia burgdoferi' has been found in the skin samples of Morgellons sufferers (Found in Lyme). 

There is little help for chronic Lyme disease and Morgellons as the CDC does not believe in chronic Lyme. I have been detiorating since 2007 and I am at a point where I can no longer live like this and I am in DIRE need of seeing Dr. Ginger Savely in D.C. or Dr. Crist in Missouri- I have already had communications with both Doctors and the first visit is a phone appointment that costs $300 with the second visit to be 4-6 weeks after costing $900 for Ginger. Dr. Crist's first appointment is $900.00. I have been seen by both mayo clinics over the years and was not able to finish treatment due to loss of insurance.  I once was a very independent woman who would never ask anybody to do a thing for me, however that has all changed and I truly need the proper treatment so I can have a quality of life worth living as I cannot live like this any longer.  I would like to share my timeline with you.

-My story starts with an infection I acquired in Basic Training at Lackland Air Force Base in San Antonio Texas-

March 2007- Start basic training
May 2007- Get bit during an event we had prior to our upcoming graduation. Tried to hide it as I did not want to risk graduating. My TI noticed the big red rash and how I was walking though and sent me to the hospital to have it looked it. They believed it was a spider bite and gave me some kind of shot and sent me back to my dorm. A couple of days later I notice swelling in my ankle but I just try to ignore it. Days before graduation, on the phone with my mom and all of a sudden I do not feel right. I am burning up my back is throbbing my legs feel like jello- I get off the phone and tell her I am going to go inside. I let my TI know I did not feel well. He felt my head and said I was burning up. He had me sit down and they called the medics up. Medics came up took my temp and it was 104.3, an ambulance was called and I was transported to Wilford Hall Medical Center where I was kept for 7 days with no definitive diagnosis.  At this time there was an outbreak of "Adenovirus type 14" that affected hundreds of trainees that started in March. You can find this information here(https://flutrackers.com/forum/forum/emerging-diseases-other-health-threats-alphabetical-a-thru-h/23103-adenovirus-14-reported-at-lackland-june-2007).  Keep in mind I did not test positive for this with blood and they were going to do a stool sample but never did prior to discharging me. So here I am in the hospital days away from graduating with a horrible fever that no antibiotic can drop. They added a ton of medicines to my allergies as I had a rash the whole time until they gave me doxycycline. (FIRST FLAG)- I am not allergic to those medicines it was a rash from the damn bite! My ankle that was swollen on the same leg as the bite-they told me I had tendinitis in and put me on percocete. So they finally get my fever down after a few days of doxy in the IV and the plan is to send me to the 319th Medical Hold Squadron- Quarantined- In CQ housing. (This means I was in a very small room, probably the size of a jail cell-with 5 other females for months.) Tests were ran for months and nobody could tell me what was wrong with me so they told me I had Mono even though that test was negative as well. They eventually end up discharging me in August with an Entry Level Separation for Depression. Of course I am going through a "down time" look at what I am dealing with. Not to mention they had me drugged up on percocete (even though they couldn't tell me what was really wrong?) and I had never taken narcotics before in my life.  In December of 2007 I followed up with my PCP for my pain that had started in my pelvic, and back and spine area. This was centralized to the right side- everything came out fine so they figured I just pulled a muscle and ordered physical therapy.

2008- I will call this the year of the first organ to stop working- gallbladder. At this time I had some pain in my legs and pelvic area as well as right upper quadrant pain. This year I start having bowel issues and I ended up having to have emergency surgery 8/28
to have my gallbladder taken out, meanwhile the test I had hours before to test the functioning of it was being read and my gallbladder was functioning 0%.  I had bloodwork done this year that should have signaled some red flags, but were ignored.
September- Thyroid checked.- T4 High-TSH low- Never notified
October-ER visit and admitted for constipation. Yes. ADMITTED for constipation. At this time blood work had red flags as well regarding liver, kidney function, a/g ratio. Also had bacteria in my urine this month. Did a Pelvis exam as well to rule out a cyst and found small amounts of fluid within my pelvis.

2009-
January-Had Er visit- high amount of blood in urine, low ALT levels.
February-Surgery required on right thumb to release tendon.Had blood work prior to surgery for my hand and many red flags that were missed.  High Eosinophils and Lymphocytes a well as WBC. Never mentioned to me.
May- First time I am tested for the Lyme disease antibody- level is .41 - Negative but does not rule out- Should test again 2-4 weeks.
Protein found in urine sample, Low Assay CK (CPK)-
June-Somehow manage to get H. Pylori and am treated with high antibiotics for weeks. Also have a MRI of my C Spine this month due to pain and tingling now in my neck.  No evidence of Neural Foraminal found.

2010-
May-Right hand now starts to hurt, have MRI, no abnormality found.
July- ER Visit- Bacteria found in urine, Kidney function low, protein high, Involuting cyst on my right ovary and fluid in pelvic cavity.
October-T4 and TSH Checked again. Both normal now however my assay thyroid hormone was low as well as my RDW and Basophils. Flags all along
November- Large knot in neck appeared, had CT scan, swollen lymphnode. At this time tests were done to check for CMV, Celiac, My Serology, EBV, and H Pylori again as I was not feeling well.  Come to find out my CMV Level was POSITIVE IGG which is an indication of previous exposure to the virus and test should have been done again in 2-4 weeks. My EBV test shows Past Infection as well, H Pylori was equivocal and needed another sample within 2-4 weeks. Vitamin D levels were low. None of these tests were flagged in my chart and I was never told about them. These tests are vital as they prove I had a PREVIOUS infection of these viruses (many are co infections of Lyme) and I was not sick before getting the infection in the military. They did NOT do an EBV, CMV or H Pylori panel on me when sick in Air Force.

2011-The year of hell.
January-
1/14-  MRI done on brain- Right side headache started at this time with blurriness in right eye-nothing found.
1/17-Cardio Tilt table test done- Sinus Tachycardia
1/27- Vit D level low again.

March-
3/11- Popping started in my throat, had scan of thyroid-looked fine
3/25-Acute Bronchitis
3/28-Vit D checked again, Still low despite taking vitamins

June- Jaw pain started- had xray- normal findings

August- Hip Pain Started to get bad- Had xray

September-
9/9-Office visit for Viral illness, Numbness and tingling, Vit D Deficiency, Myalgia, Chronic Pain, and fatigue

9/12-blood work with red flags, low liver enzymes, low basophils

9/14- Office visit for higher pain pills as not working

November-
11/8-Er Visit due to bleeding when urinate- urine PACKED (yes the result says PACKED) with Bacteria and positive for Nitrites.
11/16-ER Visit for Migraine
December-
12/12-
Office visit for Right shoulder pain; Myofascial pain syndrome; and Muscle pain, cervical. 
12/23- Trigger point injections into SI joint for SI joint Dysfunction
12/26- Er due to rapid heart rate/chest pain
12/28- EKG- Sinus Tachycardia

2012-
February- Gave urine sample for back pain, yet another UTI Referred to Urologist

March- Saw urologist. Urine positive for Escherichia Coli (E. Coli)

July- Urine positive for Leukocytes and Nitrites- another infection.

November- Found out I was pregnant- Considered high risk due to past miscarriages had gonadotropin levels checked every 3 days. 

2013-
January-
Miscarriage

May- Blood work should have seen flags once again with low kidney function, low liver enyzmes

Moved to Colorado- Did okay- still had high pain days and required narcotics to work and function. I did end up at the doctors once while there for the pelvic pain. I did not have insurance during this time so I just dealt with my symptoms. I lost my father when living there and the stress from that set me into a flare again. I ended up leaving Colorado after a year and moved to St. George Island, FL to be with a family friend and take a "mental" break for myself. I ended up getting sick while down there too after about 6 months. I was finally diagnosed with Endometriosis with my first surgery. I then required a second surgery at the Center For Endometriosis Care in Atlanta Ga 7 months after for Endometriosis again and at this time my appendix was removed and a pre-sacral neurectomy was done on my uterus (clipped all the nerves to not feel the pain) so I could try to have children- this is not proven to work. I was also diagnosed with pelvic floor myalgia at this time. I did well for about  7 months and then the pain was back. I ended up going back to my first doctor in Tallahassee FL and I had to do 6 months of Lupron Injections which forced me into menopause and made life living hell for not only me but everybody around me. I only had 3 more months that were okay after the Lupron to where I found a new doctor in Tallahassee. This doctor asked me to use the restroom when I got there and then cathed me after I did and I still had over 500 CCs of urine in my bladder- at this time we knew most of my swelling was due to urinary retention and this is when I started to self cath.  I was scheduled to do a urodynamics study a couple of weeks later which showed that my bladder spasms as it should when it gets full, however, my brain does not get the signal to go empty it resulting in the chronic bladder spasms and feeling of a donkey kicking me in my back.  I was then set up for a test trail of the Interstim Device (a device implanted in my back with a lead that runs through my spine to simulate the nerve that signals the brain when your bladder is full)- The test trial went great despite the pain from them digging wires into my spine. I soon underwent surgery to have the device implanted. It worked wonders! A couple of months later I started passing blood clots again and bloating bad and having bad pelvic pain.  We knew it couldn't be due to my bladder, we didn't think it was endo as I Had the best surgeon operate on me already so he knew I had Adenomyosis (very rare)- We scheduled my hysterectomy and I woke up hours later with no cervix, uterus or fallopian tubes and some adhesions were removed and there was a bit of endo growth. Hysterectomy recovery was tough- but for the first time I did not need narcotics for about oh.... 8 months this leads us to October 2017 when I moved back home to Galesburg to spend time with my grandpa as his cancer was getting bad. I started having pain I couldn't control again around December in my spine. At this time I had turned my interstim off as it was causing a shock to go down the outside of my leg. (The wire is bulging from my spine and the battery pack also is trying to exit the skin itself)- From then to now:


January 2018- 
Prompt care visit for bad back pain, leukocytes, ketones, and blood in urine, prescribed cirpo and pyridium.

February 2018-
Found new endo doctor in Peoria- Had to start self cathing again- Need to get interstim out waiting for the right surgeon.

From February to June I managed my pain okay- I kept myself busy with work and ADHD medicine kept me going but I was not able to really have a life outside of work and my relationships suffered. In June my grandfather started to go downhill at which time my relationship ended and I moved in to help take care of him during his last days. June 26th this new activation started with a swollen breast and the scare of breast cancer due to family history. (Really it was swollen lympnodes)- I missed many days of work for doctors appointments and scans all of which came back just showing lymphnodes and dense tissue. This is when I started needed narcotics again. September 6th I had my first TIA Stroke (I did not know what it was at  the time) while I was heading to the breast center. I pulled over and thought it was a panic attack but it didn't stop at this time ambulance was called. When they arrived I was not able to cognitively communicate- I did not know my birthdate, where I was and I was very weak on the left side and confused. At this time the ER doctor suspected I had MS or MG. I was put on prednisone as well as high dose pain medicine.  September 14th I had my second TIA Stroke and ended up in the ER, I also had another UTI and at this time they told me no more driving.  Between then and now I have lost my job as the doctor does not find me fit to work due to the multitude of symptoms. I am likely suffering serious neurological damage due to untreated Chronic Lyme and Morgellons.  The neurologist I saw told me I had panic disorder- I then informed him I did not and I know what a panic attack was and it didn't last for months. I had an MRI to check for MS (can only look above head due to interstim). We tested for lupus, and everything in between- finally Lyme came back showing a band, and then another once I started doxy for it. I was diagnosed with Chronic Fatigue Syndrome due to the infections running rampant for so long. I also have tested positive for EBV as well as Parvovirus  I had a stress test last week, I am currently wearing a 30 day heart monitor, I have lost more than half of my hair, I am having vision problems, extreme fatigue, muscle tremors, odd rashes, I cannot walk more than 10 steps without having to stop and take a break, some days I am completely bed bound.  I had to file for disability and I have a care manager assigned to me from OSF to help me keep track of things and she is working on seeing if I can get any Military help at all.

I am to the point where I have been fighting this since 2007, and I cannot live like this anymore. My nervous system is suffering damage from being attacked, my joints are swollen and throbbing with a pain I have never felt before. I am in dire need to see a Lyme Literate Doctor before I completely lose all hope.  I am trying my hardest to keep on keeping on but I have watched everything I worked for vanish in front of me or fail due to this illness and I am desperate to see one of these doctors. Any thing will help.  Thank you for all of your help and support.♥️


For more information on Morgellons and Lyme Disease please view the following links:

http://www.thecehf.org/ 

https://youtu.be/gaAsFn2OuAM

Organizer

Ashley Friend
Organizer
Galesburg, IL

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