Blood Test Test Results, Small Road Trip & CFS

20 Nov

7165026_f520

Blood Test Test Results, Small Road Trip & CFS

I am too exhausted to post anything lately and I am sorry I cannot keep up with any lyme news. But I wanted to post a quick update of what has been going on lately…..

Blood Results

So last appointment with that grumpy old immune doc didn’t go so well but he told me they were doing a challenge test to see if my vaccines as a kid/teen ever responded and if they didn’t respond that can mean I do have a primary immunodeficiency. The doctor said “if your test results come back high then we will not call you for a follow up and DO NOT COME BACK TO ME but if they are low then we will call you for a follow-up and do more tests”. Which is pretty rude to say “don’t come back to me” instead of saying “I will still try to figure out what is wrong with you”.

My test results all came back very low. They tested me for pneumonia vaccine, diphtheria, and others. They all showed that none of these vaccines responded and thy did not work. I think the range was 3 means you were healthy and the vaccine worked,1.5 means you responded and have a good immune, 1.0 means you are weak and it most likely didn’t respond, and lower than .5 means you have no immune and the vaccines didn’t work (or something like that). My tests showed .25 which is 1/4 so that shows me that I have no immune and the vaccines didn’t work.

So I am waiting on a follow up call and never received one. So I called today and made myself an appointment so the doctor can explain the tests to me. Plus I am going back on IVIG on my own before I see the doctor because I can’t wait on them forever. What worries me is when I had elderly pneumonia at age 21 it nearly killed me and the doctors all said if I get pneumonia bad again I will not survive mos likely. Then now I find out my pneumonia vaccines all failed.

Road Trip

I was able to leave the house for one last week. I am an artist at Gallery 85 (Vernon Davis NFL Owns the gallery). I do art to distract me from the pain. Vernon was kind enough to see I had some talent and let me sale my paintings in his gallery so half goes towards my infusions/medical bills and the other half goes to Vernon’s foundation (charity). I received an email asking me to send 9 or more new prints asap. Shipping them costs a lot and takes too long so my dad said he would take me to the Gallery and on the way we would visit the 49ers new stadium.

The Gallery is 2 hours from my house so I wanted to go but I knew it was going to take a lot out of me. I can’t even get in the car to go down the street I get too car sick. So of course the only day we plan to go we get our first big rain storm and there were accidents all the way there and back home so there was a lot of traffic. We arrived nearly late for our stadium tour and museum walk. I tried to make the best of every moment and bond with my dad over our favorite football team. I had a blast at the stadium but I don’t think I will ever get to go back or go to a game, I will explain why soon. We were pressed for time so I had to rush through the museum and couldn’t read anything or see much. There was an amazing 18 min video to watch when you first walk in but I didn’t have time to see it. So it was fun but we had no time to enjoy it.

We rushed to the gallery which was 15 minutes away before the employee left. Luckily we made it just in time as he was packing up to leave. The employee turned out to be Vernon Davis business partner and ex football player. He knows Victor Cruz (NY Giants) so it was nice to meet him. But I was very sick and pale from what my dad told me. I saw some of my art in the Gallery but I don’t remember too much. I can only remember bits and pieces from that day or I would have ore to tell. So we headed home and 5 minutes onto the freeway and I start puking out the window. My head was hurting so bad and where my c-spine enters my skull I felt like someone was pulling on it as hard as they could like it was being ripped out of my head. My poor dad had to keep pulling over in bad traffic so I could vomit.

I do remember puking and seeing a lady next to me with her eyes wide open and she was swerving and yelling at me. hat made me laugh although I was crying in pain. Before I started puking and getting sick I took all of my usual meds and even extra anti-nausea meds. Nothing seemed to help. My usual recoup ratio is 1:3 (1 day of leaving my house equals 3 days of bed rest and recouping) but this is day 8 and I am still very exhausted, more pain than usual and extra symptoms. So after the 3 hours it took to get home in traffic my dad and I both said “we are never going there again”, although we had a great time otherwise. I cannot do the car rides.

Chronic Fatigue Syndrome (CFS)

I have no idea how I am still writing but I am. My CFS has been so bad lately that I can barley pick up my phone to look at it. I haven’t had much time to do my art work and tat is my extra income on disability. I am so exhausted I can’t even talk some nights or follow a TV show. My whole body feels like I am in a sleep coma and can’t get out of it. My limbs are so heavy, the usual CFS stuff but for tose who don’t know abut CFS it makes you very tired. So that is why I have been quiet lately, well that and my best friend (bond sister) is doing very bad and hanging on. Plus my ex girlfriend pushed me away again a few months back and she is struggling but she won’t let me help or be a part of her life. She told me she loves me and cares about me so much that she doesn’t want to be apart but then she pushes me away for no reason. I miss my sis and my ex a lot and they are they ones who make me smile and make my day besides my little buddy Dom. I will try to keep up with the blog more soon.

Don’t ever give up. The road may be a long one but we all have each other and we have the will power to get through this. Stay strong my friends and keep on being chronically awesome!

__________________________________________________________________________________________________

Lyme Video – What’s the Story? Treat Lyme Disease not the symptoms. Act 83

8 Nov

Thought I would share this Lyme video that was shared with me. It may answer some questions and you may relate to the things that are mentioned.

Visit To New Immunologist (Rheum)

28 Oct

ten-most-enormous-bodyguards-6-1369402284-view-0

Visit To New Immunologist (Rheum)

So far at UCD I went From a rude doctor, to a decent doctor, to a flamboyant doctor. The doctor last month was a Rheum and he was really nice and believed every thing I had medically wrong but he said I was “too complicated” so he sent me to a semi-retired imune/rheum/allergist doctor today. I was going today just to see if I do have a Primary Immunodeficiency or secondary or why my immune is so low. We went to see if I should continue the IVIG (Gammagard) for the next three years.

First a doctor studying under my immune doc came in and asked me a ton of questions. All about my lupus, immune, auto-immune diseases and more. So every answer was “yes”. He seemed very nice and friendly. Then he went to get my actual doctor. All of the sudden in walks this older man and he had two other doctors follow him in. He never explained why two other doctors where in the small room with me. It was very awkward as if he was a celebrity and he had his two body guards. When he would ask a question or not understand what me or my mom were saying he would look at his other doctors as if we were idiots.

He kept starring at the ground and wouldn’t look me in the eye. He would just say something like “I don’t know why you are here who sent you”. Just being rude, abrupt and bold. He said “if I was your doctor you would not be on IVIG until I knew much more”. He also looked at my lyme test and said “I don’t know what this means it’s not FDA approved”. Ummm okay but it is also 98% accurate and they grew lyme in my blood within 10 days so look at that part. These doctors always act like we are stupid and don’t know medical terms yet I know everything they talk about. So he was basically saying he doesn’t know what I have since my testing isn’t complete in his eyes. But when 3-4 doctors with MRI’s or positive testing tell you that you for sure have something, then one doctor says he doesn’t believe them, it’s like they are saying they are smarter than the other doctors.

So then the old “I need to know more and I think you need to go to a psychologist it may be depression” came up. Fed up I said “NO! , I am not going to another damn psychologist and going through this crap again”. I said “I am somewhat sad because I am sick, I am not sick because I am depressed, I have already passed the psychologists visits and they said I was fine (plus I have a background in Psychology)”. Besides I was there for my immune so he thinks I am stupid enough to think my immune is so low because I am depressed? He just wants to rule out what 20 other doctors said I had wrong and say it is depression, just like all doctors do when they don’t know what is wrong or how to treat you. Well sorry medical system I am not taking “depression” as an answer or even to be brought up anymore I know your stupid protocol. An old “friend” who is a nurse (not sure how) said that she and doctors in her hospital use the terms “Fibro and Lyme” as a nice way of saying we are “lazy and depressed or have mental issues”. She is no longer a friend as you can see why.

So the immune doc started testing my muscle strength. He was pushing real hard and my knees hurt bad and he kept yelling “push, push, push”!! Then he sent me for a blood test and he says he is seeing if a vaccine from years ago comes out high then I am fine and don’t need IVIG or if it comes out low I need another blood test to challenge a new vaccine. But vaccines aren’t the best thing with lyme. I hope I don’t have a primary immunodeficiency but at the same time I do so he won’t say “see told you that you are not sick” or because it would explain why I have always been sick even as a baby. If I don’t have PID then I will need to find out why my immune is so low but the doctor didn’t seem concerned my numbers were dropping like crazy.

So he walks out of the room and my mom said “do we wait here” and nobody responded. It was just like we were bothering him and his time. Like he was so big bad movie star and he just walked out. Umm thank you grumpy! Obviously I am very sick even if I don’t have the immunodeficiency so show some compassion.

My Lyme doctor still wants me on IVIG and wants my immune to be higher or boosted. So I may be starting three years of an IVIG study program this month. I will wait to see what my immune test results say but either way I need immune help and this immune doc said if my test is fine then don’t come back.

Hop you all are having better luck and better days. Keep on pushing.

First Visit To New Rheumatologist

10 Oct

confused-doctor

Visit To New Rheum

If you never heard of a Rheum or Rheumatologist then you may want to be referred to one eventually. They can help get a diagnoses with fibromyalgia and CFS..etc but they are not very familiar with lyme where I live. I actually hated my first three rheums but this new one seems open-minded so far.

I was referred to the new rheum by my new PCP since he wanted me to see someone for my primary immunodeficiency (PIDD) plus my PCP didn’t know what to do for me. So the plan was to have him check my immune and see if he believed Lyme existed in California. He read my charts and saw my positive lyme test and he said “very interesting” as he was mumbling about how they did the lyme culture to catch the spiros in your blood. That was a good sign.

He suspects I have Lupus (SLE) but he doesn’t know for sure and he said there is no good testing but he mentioned giving me palquenil but with a weak immune and lyme that is a no go. I am already on a low-dose steroid. He examined me on the table and read up on all my history and records. He said “you are too complicated, you have too many things going on and all are different”. So he is referring me to a semi-retired rheum who is now an immunologist. He said he wasn’t familiar with the IVIG Gammagard I take and usually doesn’t prescribe it. He and the nurse were wondering how I get them at home with a nurse.

So although this sounds like a bad appointment, to me it was a good one since he was willing to listen and not belittle me or think I was there for drugs. He just said I was out of his league and I would be better off with a doctor with more experience in the immune field. I will be starting a 3 year study for IVIG infusions but I will be asking about GCMAF next visit.

Stay strong fellow warriors. There is light at the end of this lonely, dark tunnel.

__________________________________________________________________________________________________

Appointment With My New PCP Today

23 Sep

1742522_745531342151288_781097906_n

Appointment With My New UCD Primary Doc

So I will try not to get too angry in this post but here it goes…

I currently don’t have a primary doctor (PCP) or specialist (except for a neuro, neuro surgeon and lyme docs) since my last doctor said he didn’t want to be my doctor and I should keep looking. Every doctor my mom and I see is rude, not people friendly (unless you have something they can see wrong with you) and pisses us off! They never believe any diagnoses that my other doctors write in my records and most diagnoses were from PCP’s, rheums, specialists, not just lyme doctors. Every doctor believes lyme doctors are quacks and that there is no lyme in Cali. So this is like doctor number 30+ in the past 20+ years of searching for a “good doctor” that I trust, like or that will actually help or listen.

We tried all the docs in my city and near by cities so my mom took us to UC Davis in Davis, Ca. Although I get very car sick we figured a short drive is better than having no doctor, especially with the new pain meds/norco law that you need to see a doctor face to face every month and there are no longer refills. So I need to see a doctor every month just to get my morphine and norco since all these stupid druggies give us severe pain patients a bad name. Plus driving to see my lyme doctor every month would be too much on me since she is further away. I get too car sick so I usually only leave the house to go to doctor appointments or to pick up meds, if I can do it that day.

So we get to UCD medical office and the receptionist was really nice so we thought maybe the doctor would be also.The doc walks in and sits down to read everything my dear mom had organized for us. He just said “hmmm” a lot. Basically he says he “wants me off pain pills because only cancer patients should be on pain meds”. You heard that right. I know people with and who have survived cancer and they say their lupus and lyme pain are far more superior than their cancer pain ever was. I know cancer is horrible but for him to say that is the only diagnoses that needs pain meds was outrageous. He didn’t like the fact I take muscle relaxers for twitches, cramps, spinal stenosis and most importantly …sleep! He said “I am a traditional doctor I don’t believe in pain meds or giving pills to help, that’s what physical therapy and psychologist are for”.

He starts asking m the usual “you must be either depressed or a drinker, smoker” questions. So I told him I tried tobacco chew one time in my teens & it made me turn green & I puked all night so I never touched it again. He has the nerve to write down “former smoker”!! So now all the doctors in the future will think I was a smoker & “unhealthy” then blame that on everything wrong with me. I never smoked! He asked if I was in a war or if anyone in my family abuses pain meds. Of course I told him the truth “NO” to every question. He asked when is the last time I saw a psychologist ad if I would be willing to see one. I said a few years ago I saw a psychologist from Medicare approval and she said I was fine. The I said “no I will not see one” because yes I am depressed I am sick and lost everything but no I am not super depressed and that is not what is causing all of this I go through each day.

My mom gave him all my positive diagnoses blood tests & records from Sutter, UCSF, & with other well known medical groups. He reads them all & says he’s “skeptical & just thinks I’m depressed”. He had to mention the usual idiotic statement “lyme is cured after 10 days of antibiotics so if you did them for 3 years you were already cured and the symptoms are lingering, you no longer have lyme”. I wanted to scream, so I told a joke instead, he didn’t crack a smile. I said so depressed people tell jokes and laugh like I do? My mom says how I am always upbeat and try to motivate and inspire others. I said “I wish I could see Dr House ha ha ha” the doctor replies “well house is a fictional character and I’m a real doctor”. Not even a smirk from him as if I wasn’t funny at all. Although that was my smart ass way of saying “it’s funny how a TV doc & myself know more than you, jerk”!

He said the usual response I get every time I need a PCP, “well I can’t really help you but I will ask around to see if I can find another doctor to help you but I can tell you none of them believe in Lyme here”. So my mom started to cry & begged him to help us. I don’t like to see my om crying so I wanted to punch him or say “let me get a lyme carrying tick and let it bite you and your family then you can take those 10 days of antibiotic 20+ years after you were infected and then tell me you are cured and show me proof”. My mom begged him that we just need a doctor in case I get the flu or sick from something else & we don’t want any prescriptions or Lyme care from him. He said “so when is the last time you had the flu anyway”? What does that matter? I said “a coupe of years but only because I am confined to our house so I rarely have human interaction but I used to get it a few times a year, every year”.

So the doctor saw my mom was desperate for help and he changed his mind a little, he said “oh I didn’t say I can’t help at all, I will get blood work done today and I will send you to a rheumatologist for your primary immune deficiency & also to our pain clinic. My mom read that their pain clinic may do Ketamine infusions which are hard to find and very hush hush and they may be covered instead of paying $900-$1200 each infusion currently. The doctor said “our pain clinic will want you off pain meds & they do physical therapy for pain so I don’t think you will get ketamine or pain meds”. Yeah physical therapy (exercise) really helps with that, been there done that!

It was just like usual he was closed-minded & didn’t want to be my doctor from the start. This is what I deal with every time & have to hold back from using profanity. He even literally said “you may find another doctor in this medical building that is more “open-minded” but not many. So he told us he was “skeptical and close-minded”. I can’t believe we live in a world where if we have an invisible illness we are treated like crap by strangers, doctors and even family members who think we are just lazy and getting needles and infusions for fun. The faces I get from people when I am wearing pajamas since my skin is too sensitive to heavy clothes sometimes or when I get out of the car in a handicap space (with my plaque). It’s enough to break a person down but I won’t let it get me down, when I am backed in a corner I fight!

The doctor left the room and didn’t shake my hand or get close he just kind of wanted out of there. We left feeling like nothing was really accomplished except we may get lucky and get ketamine infusions cheaper or we may get kicked out of there too. I felt as though he saw me as a depressed guy with CFS and I am a druggie. He didn’t care I have a weak immune my whole life, bone infections, almost died from elderly pneumonia in my teens….etc. One day I will find a good doctor again that isn’t a lyme doc and things may get better, until then we have to keep on going and keep up the fight because life goes on with or without us. Hope you all are having better days, stay strong.

10693434_320158434820920_9091598_n

My First Ketamine & Versed Infusion

8 Sep

generics-ketamine-lg-1

My First Ketamine & Versed Infusion

Update: first a quick update on how I am doing. I have been getting sicker the last couple of months. I am so exhausted and haven’t had the energy to post or reply. I have been crying in pain everyday as usual. Can barely walk most days but still I am thankful I can walk again. I am told they think I have intra-cellular dehydration. Just having a rough time like I know many of you are too. We will get through this.

Infusion

After my last visit to UCSF my pain management doctor said I have already tried pretty much every pain killer on the market so as a last resort for those with severe chronic pain he recommended Ketamine infusions. My long-acting pain killer, morphine (150mg per day) barely takes the edge off and for me my Norco is the only break-through pain killer that has helped with taking the edge off also. But they barely drop my pain from a 10+ down to a 8-9 for a couple hours if that.

I have a high tolerance for pain so my 10+ is probably a 20 on most sufferers pain scale. I’m the type who cuts my head open bleeding all over and doesn’t even feel it that much. But after having RSD/CRPS , herniated discs that felt like hot lava in my neck and a bad kidney stone attack and passing it then I knew what bad pain was. I know people who cut their finger and think they are dying a say it’s a 10 on the pain scale so I know everyone’s scale is different.

For my infusion they wanted to start me on a low dose to see if I can tolerate the med and didn’t have a bad reaction so next dose is 175mg then up to 200-500mg as we progress and the knock out dose. I had zero hours of sleep the night before the infusion. I went into my own private infusion room and laid down for my IV. The nurse had to give me 3 pushes (3-4mg) of Versed hoping that would calm me and put me to sleep along with the 50mg of Ketmine but it didn’t and I kept squirming around. I have twitches with my neuro lyme so I can’t sit still too long especially during MRI’s or CT scans. It gave me the nitrous oxide feeling like when you used to get the gas at the dentist during a tooth pull. Ketmine and versed are basically meds used to sedate you during surgery. The room look “fuzzy” but that was about all I felt.

After the infusion was done I stood right up and we went back to our hotel room. Now I am not sure if it was due to a lack of sleep and being heavily sedated and having versed but I did feel less pain like maybe a 6 on the pain scale for about 2 hours. The pain slowly came back and hit me hard the next day. Today I was avoiding going to the ER the best I could. It gets scary when you feel so horrible and afraid something may go wrong but you are afraid to go to the ER because they treat me like crap. I will get my next infusion soon. But I am back to a 10 plus but it was so great to not feel as much pan for those 2 hours. Ketamine is not for everyone you usually need to have RSD/CRPS or chronic severe pain for many years to be considered for it. The Ketamine IV cost me $700 out-of-pocket.

Gammgard IVIG

I am taking a one month break from my IVIG infusions for my PIDD. My immune subclass numbers only went up a few points in 7-8 months but that means they are slowly doing something. So I will most likely be on them for 3 more years for now. Each infusion is $500 out-of-pocket but I am hoping to get them covered 100% soon. So that is a good to see they are doing something even if it is baby steps.

 

- Stay strong my friends and never give up.

 

 

 

__________________________________________________________________________________________________

 

 

 

 

Quick Update

23 Aug

ivig picQuick Update

I found a use for my POTS. I had the hiccups for a long time last night and I when I went to walk to my room, I passed out by my bed (dropped my ipad) and when I came to, my hiccups were gone! Yay!? My POTS is really active again and I have been passing out more frequently lately. I burnt my fingers the other night when I passed out and grabbed a hot pan to catch myself from falling.

Thank you for all of the comments and emails lately but I do want to apologize I haven’t been able to respond to many of them. I have been getting worse. My brain pressure is getting worse, my cognitive problems are worse. My memory has been much worse. So the lyme is really active in my brain again, I started taking minocycline again just to calm the lyme in my brain. I will be having my first Ketamine infusion ($650 OOP per infusion covered by Medicare) in a few weeks and a follow up with my LLMD to tell her that there is no progress on the Buhner protocol or other meds.

I received my immune blood work back and after 7-8 months of IVIG my immune subclasses have gone up a few points so that is good but still very slowly going up. The immune numbers can fluctuate on their own though. So my PID is not progressing as well as I was hoping but baby steps are good enough for me. I will most likely be taking a break from the IVIG since I get bad reactions/allergic reaction to almost every infusion and due to the cost ($500 OOP per infusion).

I will be taking it easy and focusing on my art to distract me from all of the extra pains so I will not be on the computer much to reply. I’ve had chronic pain almost half of my life but lately the morphine and other pain meds aren’t’ taking the edge off.  I hope you all are finding some answers, healing and having better days. Never give up!

 

__________________________________________________________________________________________________

 

 

 

 

 

Follow

Get every new post delivered to your Inbox.

Join 1,444 other followers