My Boys Symptom List (written 03/19/09)

Thursday, March 19, 2009
Adam & Brandon's symptoms

Adam symptoms & history of possible medical problems from Lyme:

~ Mono symptoms (for the last 6 months or so he is sleeping way more then normal and sometimes he can't wake up, many days of being late or missing school lately)

~ swollen glands & sore throats

~ frequent colds & allergies

~ no appetite (very thin)

~ has complained of various pains from muscles and ribs

~ leg & muscle pains when running (last week this got very severe after he ran track and he missed 2 days of school, then has had weakness since then, with troubles walking and dragging feet at school)

~ swelling around his knees

~ rashes (and eczema as a baby) (very sensitive skin)

~ appears to be sensitive to some medications

~ sensory problems (sensitive to pain & touch)

~ memory problems & forgetfulness

~ depression, moodiness & withdrawn

~ fatigue & poor stamina

~ stomach pains (gas) (also had an inguinal hernia and a stomach ulcer)

~ possible exercise intolerance (lots of troubles with pain and weakness after exercising)

~ headaches sometimes

~ ringing in the ears

~ ADHD like symptoms when he was in elementary school

~ a seizure when a baby (maybe from fever?)

~ complained of heart pain (this was years ago & he had normal heart tests so we thought dehydration but it happened several times)

Adam doesn't always tell me his symptoms so I am not sure if there are more?

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Brandons symptoms & history of possible medical problems from Lyme:

~ He has Aspergers (there is an autism/lyme connection)

~ anxiety

~ sensory problems (sensitive to pain, light, sound, heat, textures, smells)

~ eating disorder (very limited diet and sensitive to food textures)

~ vision problems (stabbing pains, double vision, involuntary eye movements, sensitive to light, eye floaters)

~ pain with urination (this has become urinary urgency & has been severe at times, worse when sitting, he misses school with this symptom)

~ moods swings & anxiety/depression/irritability/anger bursts

~ over-emotional reactions, crying easily

~ asthma, allergies & chronic infections

~ memory problems, forgetfulness

~ poor attention, focus & concentration problems

~ speech problems & slurred speech (I notice this at times)

~ letter and number reversals

~ nose bleeds

~ difficulty with swallowing sometimes

~ headaches (sometimes stabbing pains)

~ motion sickness & vertigo

~ nausea & heartburn

~ low body temp (almost every morning, troubles getting to school on time from it)

~ night sweats

~ fatigue & poor stamina

~ insomnia (hard time falling asleep & staying asleep & hard time waking up)

~ weight issues (overweight)

~ itchy rashes (he gets rashes a lot & has a rash on his cheeks at all times)

~ shortness of breath

~ dizzy & lightheaded after exercising

~ stomach problems (constipation, diarrhea, stomach pains)

~ clumsy and off balance

~ muscle weakness

~ tingling in hands & feet

~ ringing in the ears

~ sharp stabbing random pains all over body

~ pain areas he has complained of are eyes, ears, ribs, back & feet

~ stiff neck

~ jaw pain

~ joint cracking (joint problems can turn into arthritis)

~ fluid behind the knees (called Baker's cyst)

~ possible orthostatic hypotension (doctor did blood pressure while laying and then sitting and his pressure dropped 20 pts)

~ recent problem with tops of hands ~ very red, looks sunburned, burns and itches, sometimes so severe he can't go to school (not sure if allergy to new vitamins or lyme symptom?)

Some of these symptoms and health problems can be attributed to other things. But it is when you start to get so many at one time that you might question Lyme. Then when you have others in your family with it you would question it for sure!

Both my Boys have Lyme too (written 03/19/09)

Thursday, March 19, 2009
BOTH MY BOYS HAVE LYME TOO

Both my boys have Lyme disease. I now believe that they were probably born with it.

This disease can take years and years to show its true self. In the mean time it can cause minor symptoms that can be attributed to other things. Therefore, it can be overlooked as a possibility in children. But if treated while young the prognosis is much better.

I now believe that Brandon shows more symptoms then Adam because he was taking a steroid inhaler for his asthma for years. Steroids are so bad for Lyme that my doctor told me "No steroids unless it is to save my life". They make the Lyme much worse.

Brandon has always been more of a sick child then Adam. Brandon is also the only one that breastfed and it is proven that Lyme is found in breast milk.

Both boys are about to start on antibiotics and supplements next week. They are going to take Biaxin right now. It is not sun sensitive like the one I am on.

They both have to get a ton of blood work done to check all their different levels. Also to check for other possible viruses and bacteria that are common with a person who’s immune system is busy fighting an illness.

They both have to be tested for co-infections that ticks carry along with Lyme. This will complicate their treatments and make symptoms worse if they have multiple bacteria in their bodies. Co-infections that I suspect are Bartonella and Babesia. Babesia is a cousin bacteria to Malaria.

Adam also probably has Epstein Barr Virus (which causes Mono). His spleen is enlarged so he can't take gym class anymore and he has to be very careful. If your spleen ruptures you can die. He also had to quit track because of his spleen and because of his leg weakness and pains.

Right now Adam is trying to finish the school year and attend a few field trips. Once he starts treatments the bacteria will die and release toxins in this body. He takes detox meds right now so I hope that will help. But the toxins will make him feel worse and cause his symptoms to flare up. If this gets too bad he will have to take a medical leave from school.

We are not sure what Brandon is going to do? I am trying to meet with the principal to talk to him. His doctor told him he can take a medical leave but he isn't sure he wants to. He doesn't want to leave his friends and miss the end of the school year fun things. His symptoms are causing him to miss several days a week sometimes. He is also late a lot. The one symptom that is hard for him right now is urinary urgency. He tried to go to school on Monday with that and ended up coming home 1 hr later. He has missed 2 days this week so far due to symptoms. I would like to try to get the school to let him go part time and get a tutor part time. I have heard of other kids that do this. If they won't then he will have to take a medical leave.

On Monday (3/23) we are headed to the lab to get all this blood work done. Then we start their antibiotics and hope for the best. I am really nervous about the toxins and worsening of symptoms. This is called a Herxheimer reaction. http://en.wikipedia.org/wiki/Herxheimer_reaction

I am going to post their symptoms in a new blog....

My Symptom List (written 01/09/09)

Friday, January 09, 2009
MY SYMPTOM LIST

Ok for my fellow lyme friends you will understand why this list is so long! But for my other friends and family this is really what I deal with! No kidding! I don't obviously have all these symptoms each day. They come and go. I do have some of them each day (fatigue, arthritis, cognitive problems to name a few).

The bacteria get into your brain and every organ, muscle, and bone in your body so it causes symptoms in your whole body. It has also effected all of my bodies systems, including immune system, endrocrine system, digestive system, nervous system. See this webpage for details about any of these systems. http://www.innerbody.com/htm/body.html

This also causes my hormone levels to be off & my metabolism to be very low so I can't lose weight.

SOME OF MY SYMPTOMS:

~ Lightheaded, dizzy spells & feeling spacey or drugged

~ Short of breath (worse with heat or when climbing steps)

~ Very severe dibilating fatigue

~ Heart palpitations & pounding heart beats

~ I get PVC's in my heart (irregular heart beats) (had cardiologist tests)

~ Possible heart murmur (need to get tested)

~ I may have vasculitis in my veins caused by inflammation of my arteries (can cause stroke or blood clots)

~ High blood pressure

~ Ears & face flushing

~ Burning sensations mostly in legs (this is miserable, feels like I'm on fire)

~ Numbness & tingling in hands, feet, face & skull

~ Hands, feet & ankles swell

~ Hands & arm become numb (worse while sleeping)

~ Most of my organs, bones and muscles are inflammed and swollen (this causes a lot of pain too)

~ Arthritis-like pain in my bones and joints (this is ALOT worse in the winter)

~ Feet feel like every joint hurts and it is so painful to walk most days

~ Wake up stiff feeling in the morning (feel sore & aching all day)

~ Pelvic joints, knees & neck make popping sounds a lot

~ Lower back & hip pain (this is most bothersome!)

~ Sharp stabbing pains throughout body

~ Legs feel heavy & weak when I walk

~ Muscle twitches all over body (multiple times a day)

~ Muscle weakness (more noticeable in hands, arms and legs)

~ My balance is so bad that if I close my eyes I would fall

~ Motion sickness (sometimes just from watching tv)

~ Body temperature is unstable (get over heated very easily, also get really cold easily)

~ Bad night sweats (have to sleep with fan on, even when cold out)

~ Bladder problems (I can go as often as every ½ hr, if I wait too long it is very painful, doesn't feel like it ever completely empties, worse with caffeine)

~ IBS symptoms & nausea (I have a lot of stomach problems)

~ Severe mood swings, irritability & menstrual problems

~ Cognitive problems & severe memory problems (this symptom is my sadest)

~ Can't focus, make decisions, remember or recall words

~ Slower speech at times (sometimes tongue feels like I can't control it)

~ Headaches & head pressure (sharp stabbing pains)

~ Ear pressure, pain & tinnitus (ringing & clicking sounds)

~ Hearing loss (worse with background noise, or when someone isn't facing me)

~ Sensitivity to sound, light, touch, taste (most of my senses are higher now)

~ Can't handle being in a room with too many people talking at once or too much going on at one time

~ Vision has gotten a lot worse (also eye pains & burning)

~ Immune system is very weak (I am more prone to getting viruses and other illnesses that people with normal immune system could fight off)

~ Frequent sinus & respiratory infections

~ Difficulty swallowing (especially dry food & pills)

~ Swollen thyroid, other glands in my neck and head are swollen

~ I have sleep apnea now because everything in my throat is swollen

~ Acne worse & I get rashes

~ Developed a chemical sensitivity. Sensitive to medications (can't take Sudafed now), caffeine, alcohol, medical tape & band aids give me a chemical burn.

I am sure that I am forgetting some symptoms but you get the idea by now!!!

So I am sure you are wondering why I look fine and when you see me I am smiling? I have become a pro at hiding symptoms while in public. Unless I am having a good day (which are rare) then most likely I am not fine and am faking it. If I can't hide them then I stay home that day. Usually this is most days so I have learned to plan events a head of time so I can rest days before to be ready. So if you see me with a smile on my face just know that I am may not always be smiling underneath.

Bartonella Co-infection (written 01/08/09)

Thursday, January 08, 2009
BARTONELLA (Transmitted by ticks & fleas)

This is just one of the many co-infections that people with Lyme Disease can have. I happen to have this one along with Lyme so this not only complicates treatment but it makes my symptoms worse.

Here are some common names. There are multiple strands so you may find other names when researching: Bartonellosis AKA Bartonella AKA Cat Scratch Fever

Common symptoms of bartonellosis include:

~ Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)

~ Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"

~ Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature

~ Headaches, especially frontal (often confused with sinus) or on top of head

~ Eye symptoms including episodes of blurred vision, red eyes, dry eyes

~ Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)

~ Sore throats (recurring)

~ Swollen glands, especially neck and under arms

~ Anxiety and worry attacks; others perceive as "very anxious"

~ Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature

~ Poor sleep (especially difficulty falling asleep); poor sleep quality

~ Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)

~ Muscle pains especially the calves; may be twitching and cramping also

~ Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)

~ Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.

~ Tremors and/or muscle twitching

~ Heart palpitations and strange chest pains

~ Episodes of breathlessness

~ Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins

~ Gastrointestinal symptoms, abdominal pain and acid reflux

~ Shin bone pain and tenderness

Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever." Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.

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http://thehumansideoflyme.net/viewarticle.php?aid=62

Quite surprising to many physicians, bartonellosis can cause major central nervous system damage, similar in some aspects to the aforementioned Lyme neuroborreliosis. Lyme and bartonellosis symptoms may include encephalitis signified by headaches, major memory loss, rages, seizures, and coma, as well as inflammation of the heart, abdominal pain, bone lesions, and loss of vision.

Until recent years, Bartonella, at onset of infection an endothelial and subsequent red blood cells infector, was considered to cause a relatively benign and common disease otherwise known as cat scratch disease. Now that ticks have become significant transmitters of Bartonella infections into humans, this vectoring appears to amplify victims' general Lyme symptoms, and quite likely amplifies GI tract lining symptoms as well.

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Other good websites I found:

http://www.lymeinfo.net/bartonella.html

http://www.sciencedaily.com/releases/2008/11/081123222844.htm

My Lyme Update (written 12/23/08)

Tuesday, December 23, 2008
MY LYME UPDATE (12/08)

Ok so I posted a blog before about my mom having Lyme too. Well the more I think this about this and we discuss it the more we are convinced that we have both had Lyme for a long time. I may have had it since I was a child.

With that being said I am concerned about my kids. If I had this before I had them then they may have it also. All of them have health problems of some sort. At one point in time I wondered if something was wrong with our house. Cause we were all having some weird health troubles. Along with mood problems, depression, anxiety, anger issues. Just seemed off to me. Anyways, so I have talked with many parents who have passed Lyme to their children and most of them don't get sick until they are older. It can lay dormant for many years. Then it can become active during puberty or a tramatic event or surgery. This is the case with many diseases. (I have done a lot of research on diseases)

Brandon has Aspergers which is a form of Autism. There is a foundation called Lyme Induced Autism. Check out this web site: http://www.lymeinducedautism.com/

He also has had many of the Lyme symptoms most of his life and worse recently. He has been through lots of testing lately to try to figure out what is going on and none have showed anything. He hasn't been tested for Lyme yet. I pray to God that he doesn't have it. But I have a bad gut feeling that he does. I had the same feeling about myself and my mom and I was right.

I also fear that Bryan has it from me. Yes, it is said to be transmitted that way too ;) If you think about it...it's a bacteria...it could be transmitted that way and to unborn babies. Yes, he has many symptoms too (even though he won't admit it). Some I fear are getting worse more recently. So I would like him to get tested because if he has it and gets as sick as I am then we are totally screwed!! Two people sick and not working = no house or food!!

So I started showing true signs of being sick a few years ago. But I have had many chronic health problems since I was a child. The same is true for my kids. I have to test them to be sure. Because if they have it and I don't test them then they become sick like I am and it is my fault. If they have it then I would say that Brandon has had an active form his whole life. He has had many chronic illnesses since he was a baby.

Along with Aspergers he has severe sensory problems (sensitive to pain, light, sound, heat, textures) He has anxiety, depression, irritability, asthma, severe allergies, chronic infections, memory problems, speech problems, letter and number reversals, vision problems include..double vision, involuntary eye movements, sensitive to light (Lyme loves the eyes) He gets headaches, motion sickness, vertigo and nausea. He has fatigue, weight issues, rashes, stomach problems, various aches and pains. (I am sure I am missing something) Although many of these can be non-lyme...its the fact that he has multiple symptoms together like I do that make me think this. These are all Lyme symptoms by the way.

Ok so that is my latest update...I am still on oral antibiotics. Not sure if it is helping at all yet? I had some of my energy back for a short time but it didn't last. It's been about 2 months so far. Not sure about switching doctors yet? Still concidering it. I am going with my mom to her doctor in January. So I will see what I think of him then.

Update 12/26: I just found out I also have Bartonella (Cat Scratch Fever). It's another infection that ticks carry (called a co-infection). This will complicate my treatment now with both of them. I also suspect that I may have 1 other co-infection but the test was negative so I am not sure. The tests aren't always reliable.

Happy Holidays to everyone!!

Feeling Angry! (written 11/28/08)

Friday, November 28, 2008
FEELING ANGRY...

Ok so I am trying to be thankful this holiday season for having a diagnosis. But it is very tough to do when you don't know what is going to happen to you.

For those of you who don't know...finding a lyme doctor is very difficult. There are very few of them because of the controversy in long term treatments. Once you do find one most people have to travel to another state to see them. Most of them don't take insurance because they could lose their license if they give long term antibiotic treatments. This is because the insurance companies don't want to pay. And the government has made it so easy for this to happen. The current guidelines for this disease are absolutely absurd!! People are only allowed a few weeks or a month of medicine. Then they are concidered cured. Which if you have had this a long time that is impossible. This bacteria leaves your blood stream and burrows into your body, organs, tissues, brain, muscles, bones...etc. Then it can hide in a cyst form so the antibiotics can not kill it.

So right now I am feeling angry. Angry that in the United States of America people can not get proper treatment for their illness. People are dying! Children are dying! There is only 1 pediatric lyme specialist in the entire world! And he is in jeapordy of lossing his license right now.

I am lucky to have a doctor that is only 1/2 hr into Pa. But he is under a close watch with the insurance companies right now too. So he isn't treating me aggressive enough. So I may need to find someone else and have to travel and pay out of pocket. I am also on antibiotics right now. But I don't know for how long my insurance will pay for it.

It is an awful feeling to live each day not knowing what your future will be. Feeling like you may always be sick or worse you may die from this.

A women on a YouTube video on my page died not too long ago from heart failure in her sleep at age 41. I have this in my heart now so you can imagine how scary that is?

Anyways...I just needed to vent. So many people don't understand how bad this disease is and how hard it is to get treatment. I have met hundreds of people on line. All these people are having the same problems that I have. Some are worse and some are better. It depends on if you can get treatment and how your body responds to it.

So it is pretty bad when you feel like you would rather have cancer! Yes, it is an awful illness. I have watched many people I love die from it. But at least it is well known about in the public. There is no controversary about treatments. And people are willing to help you get better. The feeling of unknown is the worst feeling!

My Mom has Lyme Disease too (written 11/21/08)

Friday, November 21, 2008
MY MOM HAS LYME TOO!!

Ok so the latest news...My mom has Lyme Disease too! So how interesting is that? Did we both get it together (she has been showing symptoms longer) or is it a coincidence? Or is this problem bigger then we know? Just gets you thinking!!

So she has been sick since at least the early 90's. Going from dr to dr and getting a ton of misdiagnosis. When I was old enough to understand I thought to myself "How can she have so many different things wrong" and I thought they must be related. She tried to figure it out but then felt hopeless and figured she had to live with it (Whatever it was?) That is what happens to people who can't get help from doctors. You try to figure it out yourself but you keep getting pushed down and told you are crazy. Then you are lucky if you have support of family and friends. Most think you are crazy too or they blow it off as nothing. So you start to think it is true.

Well then I started getting sick many years later. I noticed I was getting similar problems as her. That really worried me but also got me more determined to figure it out (You can read my story on here to see how that went.) But I keep going and going regardless of the lack of support or the belief or the doctors telling me I was crazy. I knew I was sick, I knew she was sick and I wasn't gonna get any answers from these people with so called medical degrees. So I was gonna figure it out or die trying. I felt like I was dying most days anyway. And what did I have to loose? I mean I did nothing all day anyways cause I was too fatigued and in pain. So I search on my computer for hours, months, days, and even years. Yes, I said years!! When I wanted to give up something would give me strength to move on. I truely believe I was guided by my Nonnie (my grandma who died that I was VERY close to).

So anyways, I can go on and on...but the point is that I figured it out. Me with no medical degree. I probably saved my own life...but more importantly I know I saved my mom's life. That is something I can feel proud of!
So I will ask her for her story when she is up to it and post it on a blog. Check back later. In the mean time NEVER EVER give up!!!