Tag Archives: Lupus

Update: Heart Monitor Implant, Walking Pneumonia … 

3 Jun


Loop Recorder 

I’m getting my heart monitor known as a loop recorder procedure on June 14th. I had the 2 week Zio monitor recently but as soon as I took it off I had the episode. So this loop recorder will be implanted under my skin and record my heart for 3 years. We are hoping to catch any arythmia or abnormalities (or more like catch nothing). If there is no arythmia in the next 3 years my cardiologist says it’s more likely a neurological issue. The implant involves a shot of lidocaine to the chest area I believe and they cut a small incision and inject the loop recorder under the skin, near the heart. 

Walking Pneumnoia 

After suffering from a normal illness/lung infection for a week I suddenly had 104 fever and was hallucinating. I couldn’t talk, walk, see…. so my mom took me to a walk in prompt care where my doctor diagnosed me with what he thought was “bronchitis or walking pneumonia”. He gave me antibiotics but it was the family of abx that causes my restless leg syndrome to be much worse so I didn’t sleep for a week. He then switched me to Z-Pack (Zithromax) that was much better for my restless leg syndrome (RLS). I’m finally feeling a bit better getting the infection out of my lungs and no longer coughing or having low oxygen issues. For some reason at the doctors my Oxygen was going from 81%-86% which is crazy low but I think maybe the surgical mask I had on could have lowered my oxygen even worse? The walking pneumonia is getting better so back to my regular chronic illnesses and symptoms. The only difference I notice with the flu or pneumonia is the wet cough, colored phlegm, and higher fever than my usual daily fever. The other symptoms I already have daily so don’t really notice the change or notice when I am getting “normal people sick”. My temperature normally runs 94-95 degrees during the day and 100 degrees at night until usually 4-6am when I fall asleep. 

Neurologist Visit 

Saw my neurologist today. He wants to try and get me back on something for restless leg syndrome. I’ve tried many meds in the past like Lyrica but they made me gain weight and dizzier than usual. So I’m not sure which Med he’s giving me. He’s doing a sleep study on me soon with a pulseOx at home. I will also be getting more MRI updates on my C-Spine (neck), mid back and lumbar. He wants a brain scan but I just had one done two months ago. He’s trying to keep me from being “spastic”. So far the Keppra seems to be helping the myoclonic seizures. The heat of summer always makes me more exhausted than usual or dizzy so I just want to sleep all day. Lupus and the sun don’t mix so I don’t usually go out back I just stay on the couch or in bed. 
Hopefully things will start to get better. Like usual whe it rains it pours around our house. A lot of bad things going on and just trying to stay positive. Got to keep in mind it can be worse. Keep up the fight everyone! 

The Sun Is My Enemy – Living With Lupus And Genetic Vit D Issues

14 Jun

  
Lupus, Lyme, Genetics And The Sun

Since I was a kid I remember always hating to go into the sun. The heat from direct sunlight makes me so sleepy, fatigued, lehtargic & my symptoms go crazy. I sweat a lot and my body cannot regulate temperature so it overheats easy. But my body also runs a low core temperature at an average of 94-95 degrees. It scares all my nurses but I’m used to it, I’m always cold and under a blanket and use a ton of blankets on my bed and year-round flannel sheets. If I take the sheets off I get the chills. 

As I got sicker about 10 years ago I noticed one day while out fishing in a boat I had no shade and I was feeling so sick I couldn’t wait to get home. Later that night I had a bad sun burn on my face. A few days later my whole faced peeled off in one big piece of skin and it was thick like many layers of skin. It left a scar on my forehead that never went away. As I got sicker I noticed any UV lights made sicker, even the flourecent lights in big box stores made me sick. I always wear sunglasses and long clothing. 

When I go in the direct sunlight now I can feel this instant blanket of heat on me and I instantly want to lay down and sleep or pass out. I look for the shade and shade hop. Even in heat like a hot store or home with no air conditioning I can’t stay awake or can’t talk I’m so tired. In the sun my symptoms go crazy and I feel like I’m sicker than my normal sick was 1 minute earlier in the shade. It’s hard to explain. So I stay in my house and rarely leave the house. If I go anywhere I make sure there are buildings to go into. 

It’s also very important to have a lot of bottled water with you/me. I bring a giant smart water with electrolytes and regular water with me wherever I go and pain killers are a must. Remember to always stay hydrated even when you feel you are. 

I just saw I TV segment on EPP where people cannot be in sunlight and I couldn’t help but to think those with Lupus or Vitamin D genetic issues cannot be in the sun either. I’m told my body cannot convert normal Vit D or natural D from the sun. So I double hate the sun.  I just wanted to let others know that they aren’t crazy, there are many sun issues where we cannot be outdoors. Stay cool and I’m the shade. 

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.

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Appointment With My New PCP Today

23 Sep

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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.

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Blood Results – C4A, Folate, B12

9 Apr

 

C4a results

Blood Results – C4A, Folate, B12 …

I haven’t had a chance to go over my latest blood results with my LLMD yet but I have a phone appointment soon. I received these results today.

My C4a level is still high but I think it was much higher than this before. From what I read being low can mean Lupus or being high can mean lyme disease or chronic illness…. or your body is fighting off an infection or bug and your body is inflamed. I am not 100% sure yet until my doctor has a chance to explain these to me but just from what I have read on the Internet.

 

Complement C4-A is a protein that in humans is encoded by the C4A gene.[1]

This gene encodes the acidic form of complement factor 4, part of the classical activation pathway. The protein is expressed as a single chain precursor which is proteolytically cleaved into a trimer of alpha, beta, and gamma chains prior to secretion. The trimer provides a surface for interaction between the antigen-antibody complex and other complement components. The alpha chain may be cleaved to release C4 anaphylatoxin, a mediator of local inflammation. Deficiency of this protein is associated with systemic lupus erythematosus and type I diabetes mellitus

 

My folate level looks high but I have the double c677t MTHFR mutation where my body doesn’t do it’s job with the folate. I take a Folapro pill each day for this issue. I was very low in folate so this is good I guess but I don’t know if having higher folate causes any issues.

My B12 also looks surprisingly high when it was very low last time we checked it. I took B12 shots in my belly 2 years ago and since then I take one 1000 mcg chewable methyl B12 daily. I have zero energy and chronic fatigue syndrome so I am always exhausted. You think if it was higher I would have some energy.

Anyway I am not really sure what to make of these results just yet and  think I have a few other tests my doc will go over with  me soon. My testosterone levels were normal. I was in a long-distance relationship and before that I haven’t had much luck with dating and girls so I wouldn’t know about my libido. lol

 

I hope all of my fellow warriors have a much better flare-free week. Stay strong, stay humble and reach out to a friend today to make them smile it will make you feel better also. Start each day with a positive thought. You will get through the struggles you are going through it will just take time.

 

 

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IVIG/Gammagard – Low Immune System

13 Mar

IVIG 1

 

IVIG/Gammagard – Immune

Finally received my IVIG (Gammagard) supplies for my monthly home infusions. Just waiting on the nurse to call and set up the date she is coming to my house. I was supposed to do it last week the nurse was ready but the meds weren’t here yet. This will be my first time using any IV meds for my immune. My IgG has always been low for 5 years or more but my IgA was never low enough that insurance would cover IVIG so now it is low enough to get it somewhat covered. I will be paying $471.00 out-of-pocket for each infusion and that is after being covered by Medicare.

My IgG and IgA are low so we are hoping this will boost my immune and get those numbers up. I will start slow only doing one IVIG infusion every 4 weeks but that may increase in the future. Gammagard can cause headaches if you infuse too fast so the infusion for me will take about 4 hours but some can take up to 8 hours or longer. You are told to take Tylenol before hand. I will have an IV pump so they can keep the drip rate slow or low at the precise pace where I don’t feel the headache. There are many side effects with IVIG (fever, chills, muscle pain..) but many of them are already symptoms us lymies have daily so I won’t notice the difference.

Hope this helps me feel a little relief soon, I know it will take months before I notice anything.

 

IVIG 2

 

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Questions & Answers

7 Mar

QuestionsAndAnswers

Questions & Answers

I thought it might be helpful for some readers if we do a questions and answers type of thing where you the reader can ask lyme related questions in the comments section below and other readers or myself will try to answer them for you. Then I will do another blog post with those questions and any replies/answers to those questions soon. There is no “too much info” (TMI) here, we are all ill so we can relate to any embarrassing questions.

 

I start off the questions with one of my own that I need help with.

My Questions: How can I get a low-premium secondary insurance to help cover medical costs with my Medicare?

I have Original Medicare and a Part D plan but they only cover 80% of costs. I have a secondary insurance from before I had Medicare which is called Medi-Cal here in Ca (Medicaid) but since I have Medicare now Medi-Cal wants an $800 deductible per month before they will help cover any costs in each month. My IVIG (gammaguard) will cost me $471 out-of-pocket (covered by Medicare) per IV and I may need them a few times per week.Even my nurse said most of her patients on IVIG don’t pay a thing or pay much because they have secondary insurance.

My last visit to my LLNP was $900 and Medicare said they won’t reimburse any lyme doc visits for the last 3 years and future appts. My other must have meds/supps are $300 per month plus all my other needs so I will go in debt again at this rate. I know many can relate and some pay more out-of-pocket than I do. I just have already paid a ton out-of-pocket before I had Medicare so I have been there. I am looking for a way to get a low premium secondary insurance to cover the other 20% Medicare does not. Most secondary will not accept me since I have a small fixed income from disability or because I have Medicare. Thank you.

 

 

Please feel free to ask a question below or provide an answer if you can help. Thank you.

 

 

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