Update: No Antibiotics, No Flu Vaccine, CFS.. And A Cold
Primary Doctor Follow Up
I have now been off of antibiotics for over a month (I think lol) and I can’t say if I feel any worse or not. I know antibiotics did help me with a few issues and I am at least 5% better today than I was 2 years ago at my first LLMD appointment. Everyday I feel like complete crap so I can’t sit and tell you if stopping has made anything feel any different. All the symptoms are still there and I still just lay in my chair daily doing nothing at all. I did need a break so my body can heal and detox though.
I finally left the house this month to go to my follow up with my primary doctor and wouldn’t you know it I caught a cold. One of the reasons I never leave the house besides being too ill is also because I seem to catch every bug that is going around within minutes of being exposed to the public now.
During my follow up we discussed my high cholesterol and concluded it is just from genetics and runs in my family. She asked that I lose some weight, I weigh 200 lbs and I am 6 feet tall so it’s not like I am that much overweight.All of my STD, HIV and other stupid tests she ordered since she refuses to believe Lyme is chronic all came bag negative.
What was awkward is she asked me to strip down naked so she can do a physical exam on me. I was freezing and shivering the whole time. She made me lay down as she inspected my male parts for a few minutes then the awkward part happened…she asked me “do you still get erections”. I don’t know if it was bad timing or what.
So as I am naked and she is performing various tests she kept saying to me “you just have a bad case of chronic Fibromyalgia not Lyme”. Then she saw how my chest started turning red and rashy and she said “that’s weird”…. then on my back she saw weird red marks on my skin and said “hmm interesting that is odd”….then she noticed my stretch marks all over my body which are either Bartonella or Lupus and she said “wow those are very red and not normal hmmm”.
So at this point I am thinking she is changing her mind and maybe thinking I do have more than Fibromyalgia but not her final diagnoses was Fibromyalgia with possibilities of something else. She didn’t order any new blood tests and didn’t order a follow up so that tells me she is done looking for what else I could have. She did say the stretch marks and rashes were more Lupus than Fibro.
My primary doctor deal with a lot of very ill patients and most with HIV so I thought maybe she would understand I have more than just Fibromyalgia syndrome (FMS). I showed her all of my symptoms on a detailed list which she just set down and left in the room. On that list it shows how many of my symptoms are not Fibromyalgia related but they are 100% Lyme, Babesia and Bartonella related.
I asked the doctor if she thought I had any kind of immune deficiency and should I be tested for it and she replied “no”. She told me Mycoplasma and C. Pneumoniae are both nothing to worry about. She didn’t seem too interested in my double MTHFR mutation. On the positive side everything was free since insurance covers all non-lyme related appointments.
So she put me back on Lyrica again. I am currently battling with my insurance to get it covered again. Nothing like battling to get every lyme med covered and Fibro meds too.
The Flu Vaccine
I used to get the flu vaccine annually for the past 2-3 years before I became disabled and I rarely would get the flu. Before the flu shots I used to get the flu at least 2-3 times a year. I would get bronchitis, strep throat, the flu, colds and other issues all in the same year and more than a normal healthy person.
Since being disabled with Lyme, Fibro, CFS…etc I was told by my LLMD not to get the flu vaccine. So for the past 3-4 years I have avoided the flu shot. I never leave my house so I am never around the public so I know that helps me a lot. I have visitors sometimes and they can bring the bugs into my house.
This year is supposed to be one of the worst flu seasons so I am keeping my fingers crossed. As you may or may not know with chronic Lyme we feel like we have a bad flu everyday so by getting the flu it will be 10 times worse.
Having a cold already makes me feel worse. The cold isn’t really nothing I cannot handle but it’s more annoying than anything on top of all the Lyme symptoms and pain. Last year I had a cold that lasted at least 2-3 months along with strep throat. It just didn’t seem to want to go away thanks to my immune system.
I see people on social media saying how they have a cold or flu and they say they are “dying”, if they only knew what chronically ill people go through. I want to tell them “imagine what you feel like right now with your flu and add more symptoms and pain and the knowing you will feel like that everyday for possibly the rest of your life”.
Cognitive Problems and CFS
My cognitive problems have been even worse. I am very forgetful, cannot find words or names…the usual. I find it very hard to follow my shows like NCIS or to hold a conversation with my parents. I will make notes and set alarms to do things and I still forget to do them.
The cognitive problems have been at their worst for about 4 years now. I will say the severe brain pressure and very loud buzzing/ringing sounds are a little better though. But now it is more like I have the brain of a 90 year old. I never have any idea what day it is or what month and time seems to be flying by. I still thought it was Thanksgiving coming when it was Christmas.
I have forgotten names of most of my support group friends and always forget to contact them. I will just make up word because I get tired of trying to think of the real word. My latest thing is calling everything a “washing machine” when they are far from a real washing machine. No idea why that is the only word that comes to mind.
My CFS has been really bad. For the last 15 plus years I had more insomnia days than CFS days. Last year I was sleeping maybe 30 minutes a day and up awake for 2-3 days before crashing and sleeping finally then repeat. But so far the last few months have been really hard for me to keep my eyes open and my already low energy is at a zero.
I will be watching TV and fall asleep then wake up to rewind the show and then fall asleep again and again even after sleeping for 12-14 hours. I have been skipping taking a daily shower because when I go to take a shower I fall onto my bed and can’t get up and end up falling asleep. I am the type that has to have my daily shower or my skin will get rashes. I will be playing a video game and just dose off during the action in the game.
A normal person may get 8-9 hours of sleep but I used to average 2-4 hours of sleep from age 18 until just before I became disabled at age 33 in 2009. I worked jobs where I had to be up very early and got home late. I could sleep 2 hours and feel fine and never be tired. So sleeping 8 to 14 hours is very rare for me and being exhausted after that much sleep is even more rare. I don’t know if I like being awake for days with insomnia better or dozing off every second and having no energy with CFS better.
I have also been having more out-of-body type experiences and sleep paralysis. The other night I was half-awake and I swear I felt like my body and arms were going right through my bed like I was on a cloud (this was on no pills/drugs). Just some weird stuff going on.
I hope all of you are finding some healing on your journey and are finding some peace, happiness and love. In the past few months I have seen some people go into remission with their Lyme so there is always hope. I know the cold weather makes all of us fellow Lyme, Fibro and CFS sufferers even worse so stay warm and get your rest. Have a much better new year.