A new phase

I saw a new doctor today. I am split in my reaction to this new information and phase in treatment. This Doctor is an MD specializing in infectious disease and internal medicine. He has recently relocated to the area from the East Coast and is very versed in the area of vector borne diseases and has an unbelievable wealth of information relating to Lyme and Lyme related illnesses. He also takes insurance! Hallelujah! It was both hope inspiring and disconcerting. He feels I have not been getting adequate treatment. That being said, he did not feel that there was any ill intent on the part of my previous doctor and felt that she had tried to help me, but that her treatment regime was lacking at best. And, lacking because of the medical training and information offered to even the doctors trying to become Lyme literate. According to him, all of the IM shots that I have been enduring the last several months were essentially pointless as they do not have the power to deal with an infection of the caliber I'm dealing with. He feels that I should have been treated via IV antibiotic treatments long ago, and especially since my blood test results showed positive Lyme blood results months ago. He explained to me that the dosage of the meds, which have felt a little brutal in their administration were far below anything that could adequately deal with the level of illness. I have been getting 1 gm of Rocephin reconstituted into 4.2 mL of lidocaine and injected into my glut muscle every 3-4 days. He claims that the minimum treatment should have been 2 gm of Rocephin administered via IV DAILY for a minimum of 42 days. He says that no serious infection can be treated with oral antibiotics and that IM shots can not deliver the medications to the needed systems of the body. The medication can not get to the brain or blood to kill or keep the infection at bay. He also felt many of the prescriptions and supplements I have been taking have been causing their own side effects and some are flat out just dangerous drugs. He advised me to stop ALL medications at once, except the meds to deal with pain, muscle spasms and anxiety. Wow. The thought that I have been ingesting pharmaceuticals on a daily basis that have been compromising my health is frustrating. The preceding days have been filled with extra ailments, including severe abdominal distention and pain and relentless fatigue. He warned me that my lapse in productive treatment has sent me back even further and said there is still a strong possibility that the treatment will fall short of 'fixing' me. This illness has the potential to stay chronic, but he has hope that I may respond well and have relief from the pain and other symptoms. I am willing to float through on these wishes. What other choice do I have? I start a strict regime of IV treatments tomorrow. I will have to go into the office 7 days a week for IV infusions of the drug for at least the next 42 days straight. This will take a huge commitment on my part as I can not skip even one day of the treatment. The plan is that after 42 days of treatment, we will re access. If I have relief, we will stop treatment and see what my body does. If the symptoms return, we will either continue IV therapy or he will decide that we may be dealing with even other types of illness and will begin a new screening of other kinds of illnesses immediately. He confirmed that the hysterectomy is inevitable. His hope is that we can put it off until after the 42 days and then move forward with the surgery then. In the meantime if the abdominal pain and distention get worse, or if I begin to hemorrhage again, the surgery will become an immediate need and the IV treatment will either be done during my hospitalization or put off till after my release from the hospital. He wants me to bring in every bottle of medication prescribed up to this point. I am anticipating the look on his face, when I wander in with a Santa-size sack of bottles. It's really quite absurd. Maybe cutting all these oral medications will cut down the nausea and vomiting. God, I hope so. What a bonus.

This doctor had actually retired and decided to begin a quiet life, when he had the feeling it was not the right thing to do. He had relocated from the east coast to this area with his sick wife to concentrate on getting her healthy and beginning a new life. But, upon arriving in the area he had a nagging feeling he needed to be working and also was battling some boredom. He set up shop to run a small clinic and found himself swamped with cases of people in dire need of help. He told me that he had not planned on stumbling upon an epidemic with such need. So now he is spreading hope and catering to our needs by working 7 days a week to treat us appropriately. The IV treatment will hopefully stop the need for a surgical port to be put in, which can have major complications and the cost is sky high. What a blessing.Now, let's just hope my veins hold up. Seriously, I don't know how I have the luck I do. How I found him, was able to get in and was able to get some possible real answers to my problems, is beyond me. But, I am grateful.

He is concerned about the health-care situation in the state of CA for people suffering from Lyme related issues. He educated me about a little known fact concerning a strain of the borelia bacteria found here on the west coast, It is a different strain of borrelia and he says the system is not searching and treating for this epidemic. This form of borellia is transmitted by a different kind of tick, known to feed on small animals, like squirrels and rodents. Ick. How gross. I feel gross in even saying these things, but really there is no shame in it. We get bit by ticks when we live in wooded areas. End of story. At the beginning of next week, I will be going back in for MORE blood draws and tests. He says what is happening is criminal and when looking at all the evidence, one could safely come up with the assumption there are health-care officials that find it profitable to keep patients sick and use it as a platform to sell supplements and profit over the suffering of people.

My new treatment starts tomorrow. I can't imagine what the veins in my hands will look like after weeks of daily pokes. I hope I am still able to paint with the injection sites and the swollen joints.

Up till now, I have felt that treatment has no end in sight. Now, at least, there is hope for an actual break or end in this grueling process. What do I have to lose? If it doesn't work, then on to the next phase. This gives me something to hang on to, and I need that. I really do. I am having trouble trusting professionals and knowing who to put my faith in, but because of his credentials, his concern for the patients, his willingness to do the insurance billing, and willingness to work 7 days a week to help us, I am impressed and hopeful. I woke up this morning, crying in pain and with a fever. I Had a very long day of jobs and doctor's appointments. Once I finally stumbled into my bed around 7 pm, I fell in and out of a deep sleep, waking drenched from sweating episodes and having muscle spasms. One of the dogs I am currently taking care of was weighing heavy on my heart. She has kidney issues and has been having trouble not peeing in the house. She feels so ashamed when she does, that she hides and has such a look of remorse. I decided to get up and head over there for a visit, on me, to let her relieve herself one more time before morning and give her love. I felt so much better and rewarded myself with a snack pack of nutter butters and a blogging session to get this all out. I know the intensity of this treatment will be challenging and that I have a very busy week to make money to keep paying these crazy bills, but I know I will be given the strength to walk through it as best I can. I really do appreciate the chance these struggling times give us to prove to ourselves what we are capable of. It is absolutely an opportunity to show ourselves what we are made of. It is low times that the power of the universe, god, a higher power, whatever you want to call it, has the chance to break into your life. I feel a need to give back this week, because I have been receiving so much love and support and because it feeds my soul. This next week, I will be seeing one of my griefbuster kids, speaking at a hospice volunteer training workshop and taking a cat to see a lovely women in a convalescent home (she's a cat lover and has requested a volunteer to bring some fuzzy love to her). Something tells me this work will bring even more healing and strength to me then the 22 ga needle with the IV drip coming into my life tomorrow.