Family medical history, your DNA, and Lyme.

As an adoptee, I am thankful that there are people out there that take in unwanted, or orphaned children and raise them as their own.

That being said, I would like to remind the world, that when a child grows up, they may have questions, and concerns regarding their heritage, medical history, and biological relatives. I feel that it is the child’s right, once an adult to be provided with this non-identifying information.

I have a sister, who is 13 years my senior, and also adopted. We are not, as far as I know, biologically related, and she is not interested in any of this information about herself. She also has no children, or grandchildren to be concerned with. That is her right.

I began having the need to know while pregnant with my first child. My doctor asked about my family history, and I had no information about my side of the family. This was before the internet, and search registries, and to top it all off, I had an adoptive mother who was appalled, and enraged that I would even think to ask for any information about my birth parents.

Continue reading “Family medical history, your DNA, and Lyme.”

When life gives you lemons…

…add coconut.

 

So here I sit, midway through the day, and shortly after seeing my “Behavioral Health” professional.  I am feeling a bit ornery, and have decided to vent a bit.

Two months ago, on a day when I was in extreme pain, I saw my PCP, I had him send a referral for me to go to the pain management facility. (With state insurance, no one wants to prescribe pain meds.) When I finally got an appointment, which was a struggle in itself, I made my way there via med-cab. It was an hour and 15 minutes away, and by the time I got there, I was wiped out. They don’t do anything on that first visit, except make you pee in a cup, and interviewing you. The Doctor explained that she was recommending Gabapentin, (Neurontin) for nerve pain. Here is some basic info on nerve pain:

–Nerve pain is a particular type of pain that feels different to other types of pain.
It often feels like shooting, stabbing or burning pain. Sometimes it can be as sharp and sudden as an electric shock.
It’s often worse at night. It might be mild or it might be severe.
Nerve pain can be due to problems in the central nervous system (brain and spinal cord), or in the nerves that run from there to the muscles and organs.
Nerve pain is usually caused by disease (such as diabetes or vitamin B12 deficiency) or an injury to the brain, spinal cords or a nerve.
Your doctor will diagnose it by listening to you and examining you, and perhaps doing some tests.–

Continue reading “When life gives you lemons…”

You don’t “get it” until you get it.

Well, it has happened. Someone I love, and who was skeptical about my Lyme disease symptoms, has been diagnosed with Lyme. Bitten two months ago,(Never went to Dr.) woke up 4 days ago and couldn’t move. Positive Lyme tests, and antibiotics started. His exact words: “I really couldn’t understand how you were feeling. I do now.” It is difficult watch, knowing what is to come. I wouldn’t wish it on anyone. More to come…

Dr Richard Horowitz Answers:

In a recent Q&A with Dr. Richard Horowitz, he was asked the following, and answered.

Via Kriss Constantine 💚

Great Info!💚 when we asked Dr. Horowitz he answered!!!!
Question:  What are the most common causes of treatment failure?
Answer:  Without a doubt it is the co-infections (Babesia, Bartonella, Mycoplasma) or because the Lyme has not been treated aggressively enough. So, we have to treat generally – the cell wall forms of the Lyme, using the cell wall drugs like penicillins, norcephalosporins. We have to use cystic drugs that could be Plaquenil or grapefruit seed extract, but rarely Tindamax, Tinidazole, and Flagyl. We use the intracellular rotations. So the issues of treating all three forms of the Lyme and biofilms like Serrapeptase are some of the basics, but what happens is some of the doctors just don’t rotate often enough, so I find that I have to rotate every 30 days. If someone is not noticing that they are getting better within 30 days of a treatment, it’s either because they are not on a cell wall drug regimen or the intracellular regimen they are on may be herxing them. You have to know the wiring of the body.

Continue reading “Dr Richard Horowitz Answers:”

The truth about Lyme…

What you should know.

May is Lyme disease awareness month.  I am sure you have seen many tweets, and social media posts about it.  You may even know someone who has it, but if you do not have it, you may not realize how devastating, confusing, and life altering it can be.

Lyme disease (and other infections that can come with it) can creep up on you slowly, or hit you all at once. It can start with something simple such as having flu-like symptoms, or it can cause seizures.  It can give you a migraine, or a heart attack. Nothing, and no one can predict what symptoms you will have.

There is no readily available, (Physician accepted) accurate test for Lyme.  Even if you see the attached tick, and have a bullseye rash, you can still test negative.  If you test positive, you may be told it is false positive.  You may also be told “There is no Lyme in this State.”  There is also no way to tell how long you have had it. There is no vaccine, and there is no cure. It is a true Pandemic.

Lyme is known as the great imitator, because it mimics the symptoms of many other diseases, and syndromes.  There have been people who have been diagnosed with Fibromyalgia, CFS, ALS, Alzheimers, Parkinsons, MS, Bi-Polar disorder, Depression, PTSD, and many other things…who actually have Lyme.

If you want to know what it feels like to have Lyme, look at the list above of the ailments it mimics.  That is what it is like to have Lyme. Having one, or all of those, on any given day, and in any combination.

Why is Lyme so devastating? How can it cause all of these ailments? Why can’t we test for it and cure it?

Because the Lyme bacteria is a Spirochete.  (A Spirochete (order Spirochaetales), also spelled spirochaete, is any of a group of spiral-shaped bacteria, some of which are serious pathogens for humans, causing diseases such as syphilis, yaws, Lyme disease, and relapsing fever.) Spirochetes can enter all tissue, bone, and your brain.  When faced with an unfavorable environment, such as the introduction of antibiotics, these spirochetes form round bodies, or “cysts” as a method of self-preservation. They literally hide from the tests we use to find them, and the medications we take to kill them.

More here on spirochetes.:  http://www.environmentalevolution.org/environmentalevolution.org/Fair_Use_files/312-Roundbodies.pdf

Lyme can be transmitted to you by ticks and other vectors, blood transfusions, sexual contact, and in utero.

You can believe the Doctors, the IDSA, and the CDC, but the fact of the matter is that there IS proof that Lyme, and Chronic Lyme exist. There IS proof that the tests are inaccurate.  There are 300,000 new cases (or more) each year, and it can kill you.  Lyme Advocates have been battling for the truth for 40 years. There will be accurate tests, there will be a cure, but we have to spread the word. We have to fight together, to bring about change, and much needed help for the millions of men, women and children affected all over the world.

I have Lyme, and I need a cure.

Recovering from surgery…flaring & herxing?!

I never know from one day to the next how I will feel, what will hurt, or if a stressful situation will send me into a flare.  Neck pain is but one of the many symptoms of lyme.  I have been struggling with neck pain for years.  It has been one of my worse symptoms, and combined with the physical damage I already have in that area, (bone spurs, and narrowing) it is constant, often leading to migraine type headaches.  I also have limited range of motion, and pain from my shoulders to my hands. With treatment options, such as physical therapy, and steroid injections ineffective, surgery was recommended as a last resort by my PCP, and an orthopaedic surgeon.

Last Tuesday, I had surgery performed on my neck. The procedure is called an “anterior cervical discectomy and fusion”.  I am still recovering from the surgery, so, as of right now, I am not sure what the end result will be, but I am resting, taking my medications, and hoping for the best.  Unfortunately, lyme disease complicates everything.  There was no way to tell how much of my neck pain was the result of lyme, and how much could be attributed to physical defects. This carries over to the healing process as well.  I do feel that the incision site itself is healing at an appropriate rate, however I believe that my body was sent into a massive flare, and herx. due to the stress of surgery, and administered antibiotics.  (Yes, all doctors know that I have lyme, but I am not currently treating it.)

This is the first surgery I have had since my diagnosis. (My last was 24 years ago.)  I am hoping that any of my followers who have this type of experience after surgery, will comment, and let me know if my reaction is common.

I will keep you updated on my progress. Thank you.

 

Over 50, and living with Lyme Disease.

I am sure that I am not alone when it comes to shirking my duties regarding preventative health care.  We all have busy  lives, children, and grandchildren, and it is sometimes difficult to make time for appointments, and tests. As the years fly by, we put everything on the back burner until something major happens to snap us back into reality.

I had just turned 50 when I was diagnosed with lyme disease.  Being middle-aged, and trying to find a diagnosis for what ailed me was a challenge to say the least.  I had already sailed through menopause, without a lot of issues, and aside from a bit of bitchiness, and minor hot flashes, I was thankful that I had come out on the other side quickly, and in better shape (mentally & physically) than some of my friends.

Because of my age, many of my aches, pains, and other symptoms were chalked up to “normal aging”.  No matter how hard I tried to explain that my bouts with “sweats” were not anything like a hot flash, no matter how many times I explained that my pain “migrated”, no matter how many times I said that I was NOT depressed, I was continually dismissed, often with a prescription for antidepressants, and a referral to another doctor.

Luckily, I found a lyme literate NP, and was treated for 5 months, with oral antibiotics, cyst busters, bio-film busters, natural supplements, probiotics, and finally IV ceftriaxone, which in my case gave the most improvement with my neurological symptoms.  Unfortunately, my LLNP had to move out-of-state, and treatment stopped.  That was a year ago, and all of my symptoms have returned.

I headed off to my PCP who happens to be a member of the IDSA.  I was immediately given a diagnosis of PTLDS, (post treatment lyme disease syndrome).

I followed all of the recommendations suggested by my PCP,  took all tests required of my age group, and then some.  These included blood work, mammogram, colonoscopy, x-rays, cat scans, ekg,  and a stress test.  I found that my blood pressure, and cholesterol were high, bone spurs were causing the pain in my neck, and I have an extra vertebra in my lower back, that may or may not be contributing to pain there.

I am now treating the high blood pressure, and cholesterol.  I am scheduled for surgery at the end of April to hopefully lessen the pain in my neck and shoulder, and once that is done, we will address some other issues.

I am currently not being treated for lyme, but I am still watching what I eat.  I only use Himalayan pink salt, I avoid sugar, and try to stay away from GMO’s and processed foods.  I use coconut oil for oral health, and it is wonderful for post-menopausal skin care. (especially face & neck, I have seen a huge improvement in that area) I still use probiotics, and I try to get out and walk, as much as my body will let me.  Sometimes we have to push ourselves a little.

As middle aged people with lyme, our bodies are ever changing, and new symptoms may appear.  No matter how busy we are, we should always keep up with our preventative care. This is one way we can be sure our newest symptom is not due to a new condition.  After all, we want to be around for as long as we can, and ruling out cancer, diabetes, and heart disease is a step in the right direction.

I have days when I am too tired to think.  I have days when the sound of my grandchildren playing causes me to become agitated.  I have memory issues, and days when I don’t get out of bed.  I have days when my hands hurt so badly, I can’t hold a pen.  I have migraines that last for days.  I have days when I can barely walk to the bathroom.  I have ticks, and twitches.  I have LYME DISEASE.

The worst thing we can do is to surrender to lyme.  With the time we have left, we must fight, and advocate for others who will come after us.