Tuesday, May 21, 2013

May Day 21 Lyme Awareness (Sorta)


Symptoms
  1. Symptoms or diagnosis of Lou Gehrig’s Disease/ALS
  2. Symptoms or diagnosis of Restless Leg Syndrome
  3. Symptoms or diagnosis of Rheumatoid Arthritis
  4. Numbness

Now we have officially made our way into symptoms of co-infections. I will start with Babesia (Babesiosis). Many are repeats from Lyme, which gets confusing, I know. 
  1. 5. Unexplained chills

  1. 6. Will shiver even in summer weather with high temperatures. 

  1. 7. Unexplained fevers. Sometimes high fevers

  1. 8. Fatigue

  1. 9. Excessive sleepiness


And again, due to the diseases taking their toll, I will fall short of my goals. I will hopefully be able to compile facts soon but today is not that day.

I have been working my but off trying to get the meds for treatment all the while dealing with severe 'unknown' abdominal pain. I use the quotation marks, because my LLMD is certain it is my appendix and that I need to see a surgeon, but from the distance he is, cannot refer me to one. The doctors here are just trying to give me hard core pain killers and not treat the problem. I have continued to refuse the pain killers which is mostly met by dumbfounded looks from ER doctors and staff who are so used to people only coming in for them.

And on a somewhat separate note, the fundraiser to help me start treatment is finally in the triple digits! $939.91
If you can help that to be reached by the end of the month, that would be fantastic, if not, please share with anyone and everyone.


Sunday, May 19, 2013

Too sick for the May Awareness posts. Hope I will be back at it tomorrow.
In the mean time, the fundraiser about $1,200 short of our June 1 goal. Please help in any way you can.
Thanks so much!

Friday, May 17, 2013

May Day 17 Lyme Awareness


Symptoms

  1. Conjunctivitis, pink eye like symptoms, irritated eye(s)
  2. Visual ‘floaters’
  3. Forgetfulness
  4. Arthritis
  5. Stiffness in major joints
  6. Swelling of major joints
  7. Low body temperature
  8. Night sweats
  9. Tinnitus (ear ringing)
  10. Sore ribs


Facts

  1. Most Primary Care Physicians will not diagnose or even test for  LD. If you believe you have LD, the BEST thing to do is find an ILADS doctor.
  2. You, and all patients really, should not be afraid to be a self advocate.
  3. Only you know how you feel. If a doctor tells you otherwise, fire him/her. (After all, we do hire them for skilled labor.)
  4. Remember, the blood tests for Lyme are highly inaccurate, so even if you have done them and they come back negative, it doesn’t mean you're in the the clear.
  5. Expect to pay out of pocket. At the very least for the appointments. Insurance may still cover some of the meds.
  6. It will be very helpful to find out about community resources in your area. Especially if you don’t have income or very little.
  7. I applied for disability through Allsup and though I was approved in record time, I still recommend you use them or a lawyer if you are applying. (Also, if you use Allsup, tell them I sent you [Erin Hartnett]. They send checks for referrals. It would be nice to have some extra cash.) I applied in Oct and was awarded in March. Don’t be afraid to call and ask about anything.
  8. Keep records of every bill and every phone conversation. Especially when dealing with government benefits. It is their job to deny us to save money. You will likely get denied but if you have good records, you might qualify for free legal aid. I did and my medicaid went through that week and my food stamps got reapproved.
  9. Don't give up.
  10. Don’t give up.

I realize that these are less about the science and politics surrounding LD, but I don’t feel well enough to research today and tomorrow we start on co-infections. (most of this month was started in April)

Thursday, May 16, 2013

May Day 16 Lyme Awareness


Symptoms
  1. MS, Multiple Sclerosis symptoms or diagnosis. White matter lesions in brain.
  2. Hormonal imbalance
  3. Double vision. Eyes won’t meet on a focus point.
  4. Dental problems: tooth decay, periodontal disease
  5. TMJ symptoms. Jaw is painful, movement doesn’t track correctly.
  6. Facial flushing
  7. Loss of coordination
  8. Dizziness
  9. Spinning rooms
  10. Floating sensations



Facts

  1. The most confusing part of this disease is that we can cover up the symptoms for some amount of time.
  2. I can look well, by putting on makeup and smiling, but the pain never goes away.
  3. Many LD patients push through pain for years because they are told there is nothing wrong or they don’t look conventionally ill.
  4. Imagine a pop bottle. Now imagine that at exactly some moment not in control of the pop bottle it will be opened. Now the entire day, up until it is opened, it is being shaken. There is nothing physically that can stop the explosion of pop when it gets open. That is like our bodies. We can “hide” our symptoms up until the precise moment our bodies ‘open’ and ‘explode’.
  5. For me, I pushed through all of schooling even undergrad, working part time, doing rehearsals at night and still keeping an A- average. My body has nothing left.
  6. There are different ways to treat. Some go the prescription medicine route, some go the natural route, using herbal medications, and some combine the two.
  7. Some are able to treat with oral medication. Others require IV meds because they are so late stage and cannot swallow well or the orals aren’t being absorbed by the body.
  8. Yeast becomes a big problem when treating. Lyme alone allows for a happy environment in the body for yeast growth, but when you add abx, the good bacteria in the gut die too allowing for even more overgrowth of yeast. It can cause many similar symptoms as LD. This condition/infection is called Candida.
  9. Treatment will start to diminish symptoms and their severity; the timeframe is dependent on many factors such as how bad the patient was when starting treatment and how well they follow protocols and diet.
  10. Due to the amount of care and medicine needed to treat for this disease and its friends, many patients go bankrupt and lose friends and family and are unable to muster the necessary resources to win their fight.

Wednesday, May 15, 2013

May Day 15 Lyme Awareness


Symptoms

  1. Parkinson’s symptoms or diagnosis
  2. Encephalitis- swelling of the brain
  3. Swelling of eyes
  4. Charley horse. Anywhere, not just calf muscles
  5. Nervous system dysfunction/damage
  6. Organ swelling, damage, and/failure
  7. Thyroid disfunction
  8. Muscle weakness
  9. NEEDING to sit or lay down, sometimes without warning
  10. Weakened immune system


Facts

  1. Because so many doctors, by no fault of their own, have not been presented with the facts about LD,  many do not believe us.
  2. When we go to the ER we have to be careful about using the ‘L’ word.
  3. If we say the wrong thing to the wrong doctor, we are automatically dismissed as crazy.
  4. Even to share other diagnoses is hard sometimes. I have been told many times that I am too young to have Fibromyalgia. I was told by a primary, “You know you can’t have that right? That is only an old lady disease?”
  5. We learn not to share the LD dx and only the other syndromes in order to be treated for emergency problems.
  6. We are told by everyone, we are wrong, crazy, attention seeking, conspiracy theorists, hypochondriacs, etc
  7. We have to live with the physical illness and the isolation brought on by the miseducated masses, some being too righteous to help us. We lose what we thought were close and true friendships.
  8. Young LD patients often park in handicap spots (with placards or plates) and receive disdain and judgemental glares from others in the parking lot.
  9. Those who see the truth and reach out to help are often accused of being manipulated by LD patients and that they should stop helping.
  10. I often say that LD is the best Litmus test. With treatment, these horrible symptoms will begin to fade, and on the other side, we know who we are and which people are truly friends.


Tuesday, May 14, 2013

May Day 14 Lyme Awarness


Symptoms

  1. Difficulty learning/retaining new information
  2. Brain fog
  3. Burning feelings
  4. Stabbing sensations
  5. Lupus symptoms or diagnosis
  6. Difficulty reading
  7. Difficulty writing
  8. Interstitial Cystitis symptoms or diagnosis
  9. Feet pain. Burning, crushing, and/or shooting pains. Especially in the morning.
  10. Cognitive problems.




Facts


  1. Lyme is a very “intelligent” organism. It has evolved fast.
  2. There is more that we don’t know, than we know about LD.
  3. Lyme has the ability to hide from the bodies immune system.
  4. It can wait and survive while it is under attack, ie treatment, only to surface again later.
  5. When it is being starved by changing to a treatment diet, it can hibernate as cysts.
  6. When one begins to treat for LD it is important to know what, if any, co infections you have.
  7. If you have other infections in addition to Lyme, you must treat them first or simultaneously to keep Lyme from getting worse.
  8. Treating only LD will make your co infections worse.
  9. Just taking antibiotics, probiotic and nystatin is not enough.
  10. It is vital to be treated by a doctor who knows this.  


Monday, May 13, 2013

May Day 13 Lyme Awareness


Symptoms



  1. Symptoms cycle every 4-6 weeks, rotate/change/worsen
  2. Block on cardio EKG
  3. Symptoms or diagnosis of Crohn's disease
  4. Insomnia
  5. Symptoms or diagnosis of Chronic Fatigue Syndrome
  6. Symptoms or diagnosis of Alzheimer’s
  7. Feeling overwhelmed with rage or hostility
  8. Feeling overly apathetic
  9. Flu-like symptoms (early on in infection)
  10. Alcohol effects exaggerated: too drunk too quick and hangovers worse than typical.


Facts

  1. In 1883 in Buchwald Germany was the first described case of ACA.
  2. In 1899 the first ACA case was recorded in the US.
  3. 1909, the EM rash was observed by a Swedish doctor. (the bulls-eye rash)
  4. Joint involvement wasn’t proven until 1975 in Connecticut.
  5. It has been proven that Lyme has been present in NY since the 1940s.
  6. Though people believe Lyme to be a spring and summer threat, ticks bite year round and can infect at any time. There are peak seasons where ticks are out in higher numbers.
  7. Any insect or arachnid that sucks blood has the potential to transmit Lyme and co-infections.
  8. In the early 1990s it was required to report each case in every state.
  9. IDSA and CDC re-wrote guidelines and now Lyme only “exists” in certain places.
  10. A Texas university recently found Lyme in 1 out of 4 ticks in the state. Though this is sadly only recognized by veterinary medicine.

PS Please take a look at the fundraiser page and spread the word. Thanks!

Sunday, May 12, 2013

May Day 12 Lyme Awareness


Symptoms

  1. Seizures
  2. Inflammation of brain
  3. Vocal paralysis
  4. General weakness
  5. Poor attention
  6. Short term memory loss
  7. Unexplained chills
  8. Increased allergies
  9. Stiff joints
  10. Stiff back



Facts

  1. Lyme can hide from the immune system and abx
  2. There is a protective film that Lyme can build.
  3. Biofilm keeps the immune system from finding the bugs, keeps the abx from killing the bugs, and explain why some have Lyme chronically.
  4. It takes years to track down all the ‘bugs’
  5. Long term abx usage is questioned. Yet, with a fatal infection, it is one of the only ways to help. (Some people use herbal abx and treatment)
  6. It is important while killing the bad bacteria to refill the good. A large dose of probiotics is necessary to keep the gut well.
  7. Lyme ‘bugs’ feed off of gluten and sugar. This is why one of the first things an LLMD will tell a patient is to cut gluten immediately.
  8. Candida (systemic yeast infection) can cause many problems similar to LD. It is also a side effect of long term antibiotic usage.
  9. To fight Candida, one must starve it. No yeast. Also, many are on a prescription called Nystatin to kill it.
  10. Cutting gluten and sugar and yeast all creates withdrawal symptoms. Cravings come from the bugs. Our bodies, on their behalf, are addicted to these foods.
PS Happy Mother's Day to all the Mommas!

(Also, Under Our Skin is available through the link on the right of the page. Only for the month of May it is buy one get one sale.)

Saturday, May 11, 2013

May Day 11 Lyme Awareness

We break from our regularly scheduled programming to give an update. 
I seriously need help raising funds. Please, please, please continue to spread the word. I will only be able to treat if I can get the medicine. Take a look at the "Fundraiser" tab; it lists all my expenses. If you are uncomfortable with that one, try out the "Rewarding Way to Help". 50% of all sales go towards my treatment. 
Also, there are lots of changes to the "Detox" tab. 
Aaand, a personal update: things are continuing to decline. My brain is doing it's best, but the stupid bugs are taking over. My neuro is as bad as I can remember it. I am beginning to lose. I will fight to the end, but let's hope that end is after successful treatment. Please consider giving even if just a buck or two. Thanks, and I hope you are finding these May posts educational. 
And now we return you to your regularly scheduled program:


Symptoms

  1. Mood swings
  2. Irritability
  3. Delusions
  4. Paranoia
  5. Bipolar symptoms
  6. Suicidal thoughts
  7. Personality changes
  8. Difficulty multi-tasking
  9. Autism  (common misdiagnosis)
  10. Over emotional reactions


Facts

  1. Neurological Lyme Disease is late stage and can cause the patient to decline overnight
  2. Often psychosomatic medications are used to “treat” neuro symptoms. They have caused me horrible side effects
  3. Neuro patients often can’t control their own bodies.
  4. The emotional impact proves too much for familial relationships and romantic relations too often due to lack of outside support.
  5. Caregivers are often people who should be able to play a different role; significant others, friends, parent, child. Those relationships are often put on hold to help the patient treat or just to stay alive.
  6. When caregivers, need to escape for a bit, it is very hard on the patient. I know, personally, I resent others from time to time for them being able to leave me and pretend Lyme doesn’t exist. We must constantly feel/live it.
  7. LD has caused many breakups, divorces and estrangements.
  8. Isolation and feeling left by communities is a huge problem for people with Lyme, yet we are told we do this for attention.
  9. It is very very hard to find a trained doctor to treat. People die waiting for treatment or find it too late.
  10. Suicide is very prevalent. The physical and emotional suffering is horrendous.



(Also, Under Our Skin is available through the link on the right of the page. Only for the month of May it is buy one get one sale.)