Tag Archives: cld

Thank You! Wormser is OUT!! 

10 Dec


Thank you to all who signed the petition and got Wormser out. This guy has been an extra pain to the Lyme community for years. As you know I’ve been on antibiotics for 6+ years and holistic, homeo, naturopath, herbal, western medicine, rife….etc and my last Lyme test came back “very active” and positive after all those years of antibiotics yet they claim 10 days of antibiotics and you should be “cured” although Lyme could possibly go into remission not cured. Most don’t get their Lyme into remission and have late stage Lyme or chronic Lyme disease and nothing can stop it or make us feel any better. It’s not “daily aches and pains” as “Doctor” Wormser says! I’m sure those of us suffering know the huge differences in daily pains and the hell we go through. 

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Ashley Olsen Battling Late Stage Lyme Disease

8 May

 

Not feeling well so I don’t have energy for a post but wanted to share that now Ashley Olsen has come out about her battle with Lyme and how she “thought she was dying”. One Article actually wrote the truth that late stage Lyme is “incurable”. Usually they write that with 2 weeks of antibiotics you are “cured” of Lyme which is a false statement. Latest stage Lyme disease is horrible and hard to treat, the Lyme is resistant to all medication on most lymies (like myself) so we take maintenance doses of meds to keep Lyme at bay. Most lymies have early stage yet assume they have late stage and are not sure the differences. Early stage if caught early can be easier to treat since the Lyme may not be in cyst or biofilm form. I hope Ashley will fight along with us all and the truth keeps surfacing. I’m rambling because I don’t feel well after tinidazole  which is a cyst buster. Have a great week lymies. Maybe Ashley and I can be friends or date lol. Getting my IVIG Wednesday. 

My First Ketamine & Versed Infusion

8 Sep

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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.

 

 

 

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Update: Sicker, More Pain & IVIG

1 Jul

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Update: Sicker, More Pain & IVIG

Just a quick update. I know I have been quiet for a while. I have been feeling sicker the last few weeks. We upped my dose of Morphine to 75mg 2 to 3 times a day but the pain is feeling worse lately not sure why. I am still taking my usual Norco, many anti-inflammatories, and other herbal pain killers. I also added senaga root which is supposed to help with pain. It is the severe, sharp, nagging, non-stop pain from head to toe in my muscles, nerves, bones, joints…etc in every inch of my body. I know it’s not just the lyme and co’s it might be my other illnesses or chronic pain/arthritis acting up. It makes me so stiff I can barley walk. My right hip also still has that weird severe pain where it almost feels like I fractured my hip/leg bone from my hip joint to the knee cap. I have had broken/fractured bones before so it feels similar.

A lot of bad news and negative things happening lately so I am trying my best to stay positive. Even the blood lab called and said they left the fridge open and my blood vial was ruined so I need to go back. Last blood draw I passed out and had collapsed veins so it’s hard to find a good day where I am kind of hydrated to take the blood test. Had to go get my RX and my MMJ in another city so I actually left the house for once and had lunch and ice cream that day. I was feeling very weird at the restaurant though and wanted to puke and pass out.  But I had fun and enjoyed the little things. I know someone always has it worse so I don’t like to complain. I just feel like I try to do everything right and life takes everything I like or need away from me.

I have been very dehydrated still yet sweating at night soaking my bed. I am taking concentrated electrolytes, trace minerals (rehydrate), drink lots of water, tea and kombucha. Just can’t seem to not be thirsty and I have a drink in my hand constantly even when sleeping I will wake up every 15 min for a drink. Even with all the pain and passing out…etc. I always try to work out each day even if it’s for a minute. I sit down on my bike and use it for a few minutes until I am ready to pass out or puke. It tales a long time to get oxygen and catch my breathe but at least it will keep my leg muscles from getting to weak. I also lift light 15lbs bar bells. No matter how hard it may be try to get some physical activity in your day.

Getting my IVIG either today or Wednesday depending if the meds show up on my porch today and my nurse can make it. It should go fine, I haven’t had too much trouble with them lately.

 

 

Sending all my best to all my fellow warriors and may better days come. Stay strong and keep swimming…………

 

 

 

 

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My Chronic Lyme Disease Symptoms (Updated)

6 May

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My Chronic Lyme Disease Symptoms (Updated)

I get asked a lot about how long I have had lyme and what are my symptoms. I don’t like answering this question because there are too many symptoms to list and I forget what most of them are because I have been dealing with them so long I think they are “normal”. Below is a list I posted a couple years ago of a good majority of my symptoms from lyme and co’s but I know there are many symptoms missing.

There are times when other lymies who have one or two symptoms will ask me “why can’t you work, I can”  as if they think lyme is curable and only has a few symptoms but they have no idea how much worse lyme can get if untreated your whole life or once it is stage 3. This disease is a living hell and it is different for every person so it is hard to compare or give advice to others when we all have different battles with the same disease.

 

My daily chronic lyme disease symptoms:

**My pain from the bottom of my feet to the top of my head is daily (24/7) and severe (pain scale 10++) but most of my pain is caused from other illnesses or medical issues plus the lyme and co’s. Here’s an older list from last year. Some may repeat sorry. I know I left out many symptoms since there are 100′s but of course I am struggling to remember them all. Some of these may not even be symptoms but illnesses causing them.

 

Head, Face, Neck

  • Pressure in head (sometimes meningitis)
  • Headaches, mild to severe almost daily
  • Migraines up to 7 times per month (i’m lucky)
  • Twitching of facial muscles
  • Facial flushing
  • Stiff or painful neck (most of my pain starts here and radiates down)
  • Cracking in neck, herniated discs & cysts in spine caused by lyme
  • Sore throat, strep throat, hoarseness, runny nose, dry nose
  • Mouth sores, dry mouth, swollen tongue (rare)

Eyes/Vision

  • Double or blurry vision
  • Increased floating spots or floaters (bugs)
  • Pain in eyes, or swelling around eyes
  • Oversensitivity to light (daily)
  • Flashing lights/Peripheral waves/phantom images in corner of eyes
  • Sensitive to movement such as a movie will get me dizzy/nausea
  • Eyes burn or hurt where I can’t see phone screen or tv
  • I still have 20/18 vision somehow

Ears/Hearing

  • Decreased hearing in one or both ears, plugged ears
  • Buzzing in ears
  • Pain in ears, oversensitivity to sound
  • Loud Ringing in both ears
  • Sound of blood rushing in head

Digestive and Excretory Systems

  • Diarrhea (IBS)
  • Constipation (sometimes severe TMI)
  • Vomiting after I eat (used to be daily until I started mmj)
  • Irritable bladder (trouble starting, stopping) or Interstitial cystitis
  • Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
  • Gastroparesis (illness not symptom but may be cause of some of these)
  • Stomach cramps/pain
  • Leaky Gut
  • Had C-Diff and a severe case of Candida

Musculoskeletal System

  • Severe bone pain, joint pain or swelling (bone pain is one of the worst for me)
  • Stiffness of all joints, back, neck…
  • Severe muscle pain or cramps
  • Twitching and spasms all over
  • Unexplained bruising
  • Charlie horse in muscles

Respiratory and Circulatory Systems

  • Shortness of breath, air hunger, cough, wheezing
  • Chest pain or rib soreness
  • Night sweats or unexplained chills
  • Heart palpitations or extra beats
  • Tachycardia, bradycardia (rarely) POTS
  • Stinging in lungs after sneeze or cough
  • Low oxygen (have O2 machine)

Neurologic System

  • Tremors (since I was a kid) or sometimes severe shaking
  • Burning or stabbing sensations in the body
  • Nerve pain (mostly severe each day)
  • Weakness, peripheral neuropathy or partial paralysis
  • Numbness in body, tingling, pinpricks
  • Poor balance, dizziness tippy, difficulty walking
  • Increased motion sickness
  • Lightheaded, wooziness

Psychological well-being

  • Irritability
  • Unusual depression
  • Disorientation (feeling lost)
  • Feeling as if you are losing your mind
  • Over-emotional reactions, crying easily
  • Never enough sleep or insomnia
  • Difficulty falling or staying asleep
  • Panic attacks, anxiety

Mental Capability

  • Memory loss (very bad short and long term loss)
  • Confusion, difficulty thinking
  • Difficulty with concentration or reading
  • Loss of words or forgetting words
  • Dyslexia
  • Going to the wrong place
  • Speech difficulty (slurred or slow)
  • Stammering speech, stuttering
  • Forgetting how to perform simple tasks

Reproduction and Sexuality

  • Loss of sex drive

General Well-being

  • Malaise
  • Extremely sensitive to cold and heat in body and mouth (eating food)
  • Neck glands cause shocking pains
  • Phantom smells
  • Extreme fatigue
  • Unexplained weight gain/loss
  • Swollen neck glands/lymph nodes
  • Unexplained fevers (high or low grade)
  • Early on, experienced a “flu-like” illness, after which you have not since felt well.
  • Low temperature
  • Unable to walk
  • Arthritis flares and my bones get stiff or hard to move/flex
  • Out of body experiences
  • Exhaustion daily (never a day with energy in last  5 years)
  • Hot flashes
  • Chills
  • Sensitive to the sun (makes me feel sicker)
  • Sugar makes me feel worse
  • Hands hurt so bad I can no longer write with a pen or draw
  • Feeling like each day I am dying
  • Literally feel like I am 90 years old
  • Primary Immunodeficiency (no immune system)
  • Haven’t driven a car in 4 years due to symptoms
  • And many more I can’t remember……

 

If you name a lyme disease symptom I most likely have it. I just don’t have the genital pain like I see listed on lyme disease symptoms checker at my LLMD. I usually check mark every box on the symptoms sheet at the doctors (those who see an LLMD know the long symptoms list we have to fill out each time. I rarely leave the house usually only to get a prescription with my mom or go to a doctor appt. I have been bed ridden but now I am able to walk to the living room and lay in my chair or walk around the house. I lost the ability to walk and was in a wheelchair but I will not let Lyme beat me! I am planning a vacation so I hope to get out for the first time in years.

As for me I have had lyme basically my whole life and always thought everyone had the same pains and weird things going on in the body as I did. I didn’t start to get worse until maybe my teens and when I was 19-21 that is when everything started to snowball and get worse. Started with bad knees, arthritis, spinal stenosis, nearly died from elderly pneumonia and so on. I worked and went to college until I finally collapsed and could no longer keep up with the world 5 years ago when I became officially disabled. So if you have only a few symptoms and think it won’t get any worse it most certainly can. So treat your lyme as much as you can and as early as possible for a better chance of remission.

 

This all sounds depressing but we will all get through this and we will not let our illnesses define who we are. Never give up and never take your life or health for granted because you never know what can happen. Stay strong, love life and fight on!

 

 

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