Four months ago I wrote the last Lyme Journal Entry. I thought my strength would allow me to blog thru the illness. Then the 5-6 month point turned my life upside down and it’s been hell. I fired Lyme doctor and not taking meds at this time. I know many are wondering why the hair photo? I was losing hair by the handful and showering was near impossible with longer hair. When you can’t stand, lift your arms or sit down without falling, showering is a problem. I planned a nice Army shave but David would not help. I grabbed the scissors and cut eight inches off. Feels great, looks like crap. Who cares?
I’m sure people have noticed my positive attitude is quickly sliding. The mounting problems are not all Lyme related. My cat Truffles is dying, lack of communication from my doctor, getting so sick and walking some days is extremely painful. Our bed was to hard so I moved to couch months ago. I lived on the couch now. Not bad for sleeping accept all the animals want to go out, poke me in back, cat needs to attack me. Even attempting to get enough sleep is impossible. With Chronic Lyme Disease sleep is your best friend and a key to survival.
Let me share some Lyme politics for newbies.
Most of the expert Lyme Literate Doctors, are not practicing. Several years ago doctors where watching people die using CDC standards, which states patients can only receive 2-4 weeks of antibiotics at most. The Lyme doctors who understood how the viruses worked knew 4 weeks was a joke. The doctors worked together helping each out calling in antibiotics for the others patients. I have Chronic Lyme, it can take 1-3 years to get well. Medication is one of the many ways to heal. Getting enough sleep is number one after the meds., take supplements, gluten-free diet and eat foods to help your body heal. No Coffee and drink only electrolyte water.
There was a huge division among Lyme doctors when the CDC allowed several doctors to patent the virus. Makes no sense to me. For years patients were clueless of the division. Both sides fought hard with the CDC to prove their data, from the video’s on YouTube it looks like the battle was lost before presentations started. The expert Lyme Literate doctors were quite vocal and a witch hunt is what followed the meeting. Doctors appeared before the Medical Board and where not able to practice, some for up to a year. Several doctors lost their clinic and everything they owned trying to keep their patients alive. It is a complete mess the CDC let happen, needless to say, I’m pissed. Just a little more background info to burn into you brain.
Many Chronic Lyme patients become so sick they are not able to work.The first reality is you no longer have insurance and can not afford new insurance if you could buy. I’ve watch video after video on YouTube of people with good paying jobs, rack up several thousand dollars in doctor bills and many have to file bankrupt, losing everything. One video told of a couple who owed their parents $500,000 dollars. Lyme effects everyone in your family, friends, your health and financial security.
It’s going on Spring in some parts but summer will be here quickly. I don’t want any of you or family members to struggle with a virus which looks like a worm. The viruses travel thru the blood until they can find a way to you major organs. Lyme likes to get cozy in the liver, kidney, heart and brain. I have three tick borne illnesses and Epstein Bar Virus. I have cognitive issues, my eyes constantly see things moving by my peripheral vision and balance is fleeting. I was in the bathroom two days ago about to reach for medicine cabinet. I slammed into wall hurting my writs and several fingers. If that wasn’t enough I slide down the wall falling on toilet and hurt my leg. The doctors don’t know how much of your ability will come back if any. You have to keep fighting.
Why I fired my doctor. My husband and I formed an impression at first appointment, not so good. I was desperate to start treatment and no other options.
* I start a couple of drugs until the Lab work is back. The follow-up appointment, the first words out of his mouth are you are in a great deal of pain. REALLY? His communication and organization skills are lacking. No pain meds prescribed. He has to call someone in to bring him something several times during appointment.
*I’m loaded down with over 50 pills to take a day plus 15-20 supplements and sleep all I can. The equation doesn’t work. I have gastro issues and the high-powered antibiotics made me nausea’s all the time. I asked to have PICC line in arm to give my stomach a break. He did not plan to use a PICC line? Almost every patient gets a PICC line so they can fill you full of drugs and bypass your stomach. My wheels are turning. He has lab work for me to do, I didn’t do it. He never asked about the Labs. He said my Lead levels were three times higher than normal, in dangerous range. No follow-up test ordered, it was like “so you know”. I’m scared, my brain is on overload, the test said current and ongoing exposure. I spent about two weeks looking for an answer. I looked at top of report one day, it wasn’t my report. Admin acted like no big deal. HIPPA laws are not new.
With the list of experts I start going down the list, ONE of the leading Lyme Literate Doctors stills practices. The doctors called before Medical Board and CDC. Now are full-time advocates/researchers. I phone his office in DC and they are taking patients. When you have cognitive issues filling out 50 pages is crazy. I stayed up last night to get everything I could without waking my household. With Gods help I will finish paperwork tomorrow and get appointment in next month or two.
ILADS is the professional organization Lyme Literate doctors belong to. I saw the tab on site for ILADS Protocol on Lyme. I jumped for joy. Let’s hit them with our best shot. We have boxing gloves on and the truth will come out. The document was extensive for the different stages of Lyme or other tick born illnesses. I felt so happy that others may not have to suffer in the near future. The document was well research by leading scientist, leading hospitals, large populations of people. I cheered when I read reasearch which outlined how the current system is incorrect, and they went all out. On the issues of insurance, extensive research with real patients exposed what the CDC is keeping from the public. If you want to learn more about Lyme, YouTube has so many videos, you might not have to go anywhere else. If you like the medical jargon go to ILADS site.
A shout out to others who suffer from Lyme or tick borne illness. I think of you, pray for you and send good karma your way.