We've started calling whatever is going on the "perfect storm" of infections. You only have one mother so we are doing our damnedest to save her from whatever this is!!!
Note: My father is also infected and affected but is not as fully debilitating as my mother.
When taking these issues to her primary care physician in the Cottage Grove Oregon area she and the family have been met with nothing but resistance and in-turn no insurance help to cover some of the expenses.
I flew out to Oregon this past June to help get her into a specialist that would actually listen and take the symptoms seriously.
Doctor Day of Restorative Health Clinic was just what we needed. RHC are specialists in special cases including parasitic and Lyme conditions. Our collaboration with RHC and Dr. Day resulted in a plan. This began with getting mother started on prescriptions that would help her immediately with the immense pain, sleep deprivation, and bowel obstruction. To help plan for future treatment needs Dr. Day needed to also plan for labs to be ordered to help diagnose exactly what is going on. The six month plan was to be iterative and every 3 weeks examine symptoms and tune the treatment plan accordingly.
It was at this point we ran into another wall...
1. All RHC clinical visits were submitted to Health-net and Medicare and were rejected for payment. These have to happen so I cover these out of my own pocket.
2. All the initial prescriptions given were submitted to HealthNet and Medicare and were rejected for payment. These too had to happen so I covered them out of my own pocket.
3. The initial blood and urinalysis lab orders were also submitted to Health-net and Medicare and were rejected for payment. Again... have to have these so i pay these out of my own pocket.
4. Further required labs were ordered. In order to see about getting some of these critical labs covered by insurance we tried once again to approach the primary care physician for review and submission to Quest Diagnosis.
The self-pay estimates on these are $6700.
There is nothing easy about any of this. While my mother suffers and has to be fed, bathed, assisted with walking and getting dressed we are met with more resistance from the PCP.
This time the PCP is insisting that the lab orders received from Restorative Health Clinic aren't good enough. She needs to have a full rewrite of the orders in some table format so that all the codes on the orders can be put side by side with a description column and that "we" needed to ensure Restorative Health Clinic also provides Detailed Notes and Chart Notes before she(the PCP) would do anything with this request. Now of course RHC is disputing what is being requested as highly exceptional.
Here I am now (along with my loving brother) stuck between two medical institutions that can't seem to work together...
I realize there are 40+ labs being ordered here but the reason for that is that NOBODY knows what is going on with my mother and why her temperature is below normal all the time, her 100 pound weight loss in 7 months, skin falling off, mites crawling and falling off her skin, continued bowel obstruction.
Needless to say we need these labs. I am looking to raise the $6700 to pay for lab orders that were prescribed by Restorative Healh Clinic.
As a history or timeline of what has occured since December i've provided the summary below:
- My mother started feeling intense rash like skin condition on legs, arm, upper back, and face. This lead to non-healing lesions and sores within 30+ days.
- My father started with the same symptoms.
- Their PCP Doctor visit resulted in a poison oak diagnosis so they treated it as such and let a few weeks pass.
- Grandson gets diagnosed with scabies so my parents visit a dermatologist to see if the "Poison Oak" was actually scabies. That Dermo visit resulted in a cream prescription. This was used well into February with some itching releaf but no elimination.
- Further dermo and PCP doctor visits for help with ongoing symptoms resulted in “it’s residual scabies” so they continued asking for more refills to the creams and were not administered further dosages.
- Secondary family doctor visit resulted in referral back to dermatologist noting "not scabies".
- Family re-engages the dermotologist where treatment was consultative w/o prescription or solution.
- Mother reports noticeable weight loss on themselves.
March - April 2018:
- Mother experiences first sign of hair loss, stinging skin.
- Mother experiences painful constipation on a regular basis
- Brother reports finding rodents in the house as well as some feces in the cupboard, sugar, and flour of which our Mother and Father had used during those previous months.
- Mother reports blood pressure much lower.
End of May 2018:
- Mother with much worsened symptoms.
- Attempt to change PCP providers has been rejected by their home town doctor's office.
- Seeking another care provider's diagnosis of the situation but nothing to-date.
- Mother constipation symptoms worsen with the addition of appetite loss and nausea
- Mother reports dropped temperature to 97.8
- Mother marked 60+ pounds in weight loss since December 2017.
- Black specs found daily on the skin and bed sheets
- Lesions and sores experienced with nodules and constant itching and burning.
June - July 2018:
- First appointment with Restorative Health Clinic
- Mother starts on Naltroxene, Linzess, Gabepentin, Doxycycline, and Alinia among others.
- I move my mother out of their house to a new rental where a focus on her treatment can begin.
- I order Mold inspections - which result in discovery of 5 deadly molds in my mother and fathers bedroom and bathroom (ERMI/HERTSMI lab work paid for out of pocket).
- Second appointment with Restorative Health Clinic - which resulted in needing more lab-work and brought us to this current point of hitting the wall....
- Mom hits over 100 pound mark in loss of weight.
Any support you can lend to this dire situation is so very very very much appreciated.
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