Lyme Aware

Author Archives: Lydia Niederwerfer

Supplements that Support Sleep in Lyme Disease

Often, when undergoing treatment for Lyme disease, many of us go through a Herxheimer reaction which actually makes us feel worse. So not only do you have to deal with the common symptoms caused by the Borrelia bacteria, but you also have to deal with the after effects of killing off the bacteria and the endotoxins that have been secreted as a result of the process.  This causes a worsening of the symptoms of the disease.  Lyme disease, along with its coinfections, wreaks havoc on your body; it messes with your entire body and how it functions. 

Get Plenty of Rest:

Those of us with Lyme disease often hear your doctors and friends tell us to get plenty of rest when we are not feeling well. And, we often reply, “It’s easier said than done.”  Although we are often exhausted by bedtime, many of us experience horrible insomnia.  It is so frustrating to be exhausted and want to sleep but not be able to.  Insomnia refers to not only the inability to sleep but also not being able to sleep through the night.  Insomnia often causes us to be unable to follow a regular sleep schedule.  Additionally, insomnia is a common symptom of both low GABA and low serotonin.

Many of us have a very difficult time keeping a regular sleep schedule, and the time we go to bed is very important.  This is because nighttime is when “cytokines” come into play.  Cytokines are molecules that signal cells to produce immune responses in the body and stimulate the movement of cells towards areas of trauma, inflammation, and infection in the body. Cytokines play a major role in those with Lyme disease and are often the cause of all our symptoms. Sleep is very important in healing from Lyme disease. 

In my battle with Lyme, I used to find it maddening, because I would want to sleep so badly, but it seemed that whenever I did sleep, it was only for a few hours, and then I would be awake for a large portion of the night when most were sleeping.  Or, I would be exhausted and just lay there in bed, begging for sleep.  There were some things that did end up helping me along the way, but I often made changes along the way due to the effects of the disease.  The following are a few things that I found, used and which you may find helpful in your quest for sleep:

Valerian Root – Valerian extract increases gamma-aminobutyric acid (GABA) in the brain, GABA acts as a neurotransmitter in the central nervous system and has sedative effects on the body.  When GABA levels increase, it helps to reduce brain activity, which then allows you to fall asleep a bit easier.  I used it in a tea with other herbs, and it helped me fall asleep easier. 

Melatonin – Melatonin regulates the body’s circadian rhythms, including the sleep-wake cycle. The pineal gland in your brain produces this hormone. Studies show that blood melatonin levels are the highest before bedtime. However, supplemental melatonin may not help if the person taking it doesn’t have low melatonin levels.  The effective doses vary quite a bit from individual to individual.

5-HTP (5-Hydroxytryptophan) – 5-HTP is an amino acid that raises serotonin, a neurotransmitter that has calming effects on the body.  Some even refer to it as the “happy hormone” or “happy chemical” which converts to melatonin at night. Tryptophan is the other amino acid that raises serotonin.   5-HTP was very helpful for me.

Chamomile Tea – Chamomile tea works on the brain in a way similar to that of benzodiazepines. Benzodiazepines are drugs that work on the central nervous system and increase GABA levels, thereby, reducing anxiety and promoting a sedative effect. Xanax, Lorazepam or Valium are some benzodiazepines. However, chamomile has a similar relaxing effect and can help you sleep without all the harmful side effects of benzodiazepines of which there are many.  When I drank chamomile tea, it seemed to calm me and help me relax, and I liked its smooth, pleasant taste.  

Ashwagandha – My doctor recommended Ashwagandha to increase my strength and energy, but I found that it also helped me to sleep.  It was a very nice surprise!  So, I did a little more reading on it and found that it has been used for centuries in “Ayurvedic medicine to increase strength and vigor, and to combat stress, depression, anxiety, and fatigue.”  Ashwagandha was found in studies on rats to have comparable effects of Lorazepam, which I mentioned earlier. 

Cannabis – During my research for my article, “Cannabis for Lyme Disease?: What You Should Know,” I ended up wanting to try it for myself. I was pleasantly surprised to find that it helped with my insomnia.  The chemical cannabidiol (CBD) has a sedating effect on the body, which relieves anxiety, stress, and pain.  (I struggled with this decision.  I decided that it couldn’t be any worse than Lariam and its effects on me which I had taken previously.)

Cordyceps – Cordyceps is a mushroom that has been used in Chinese medicine for centuries.  Back in 2001, my doctor suggested that I take the Cordyceps at the beginning of my treatment regimen to strengthen my immune system, improve my energy and reduce my fatigue, but it also helped to sleep. The mushrooms work as an antioxidant and improve cellular function.  It calms the nervous system, promotes restful sleep, reduces anxiety, and acts as a sedative.

If you are having trouble sleeping, there are supplements, herbs, and foods that can help you, in addition to changing your bedtime routine.  Do some research, then the next time you visit your doctor, approach him/her with your findings and ask plenty of questions.  Of course, not all of these will be helpful for you, but with your doctor’s assistance, you may be able to find something that will improve your shut-eye.

Before trying any of these suggestions mentioned here, ask your doctor if they are safe for you.

——————————-

References:

  1. Meltzer HY, et al. Effect of 5-hydroxytryptophan on serum cortisol levels in major affective disorders. II. Relation to suicide, psychosis, and depressive symptoms. Arch Gen Psychiatry, (1984 Feb). 41(4):379-87.

News: Via The Mayday Project – Lyme Patients Rights Trampled On Again

Via The Mayday Project

This was to be forwarded to all Lyme Warriors and Supporters and the Lyme Community

Over the years that I have been in advocacy there has been one person who often stirred the pot and railed many different Lyme organizations. Lucy Barnes (AKA Tincup) has made many of our lives difficult at times. However, today I would like to thank her for an email I received from a mutual friend. She is on point with her assessment of the Working Group for the Federal Bill. This information should not have been hidden from the community! This information should have been made available to all who wish to apply as soon as these advocacy groups and patient organizations were made aware of the application! However, certain groups in our community believe they have the right to make up your minds for you. The Mayday Project thinks differently! Here is Lucy’s letter to the community:

Lyme Patients Rights Trampled On Again,
This Time By Lyme Disease Organizations

On July 17, 2017 the announcement below was published by the Department of Health and Human Services.
Lyme disease organizations knew of the announcement that stated the HHS was ready to accept nominations for the open “patients and families” seats at the table of the newly formed federal Working Group.

Unlike many projects and fund raisers these Lyme organizations announce with great enthusiasm, they are not broadcasting this important information so patients and their families will know about it or be able to participate in the process.

When asked directly who was being nominated by what Lyme groups, no one would volunteer the information so patients could support the nominees, submit other names to be considered or object to the names submitted.

The ability to have a choice in the matter was taken from Lyme patients and their families across the country by:
• the Lyme Disease Association (LDA),
• the International Lyme and Associated Diseases Society (ILADS), and
LymeDisease.org (formerly CALDA).
• Other Lyme groups are involved and have also refused to get the word out to the patients and the public.

We expect these kinds of sneaky, underhanded tactics coming from the Infectious Disease Society of America (IDSA), the Centers for Disease Control and the American Lyme Disease Foundation (ALDF).

We don’t expect leaders of groups we’ve supported, that were supposedly set up to represent the patients, to purposely deny patients and their families a voice and a choice.

Shame on them!

If you want to nominate someone for the open seats, the deadline for doing so is before the close of business on August 16, 2017.
Announcement of Intent To Establish the Tick-Borne Disease Working Group and Solicitation of Nominations for Appointment to the Working Group Membership

A Notice by the Health and Human Services Department on 07/17/2017
Link Here
Printed version:
PDF
Publication Date:
07/17/2017
Agency:
Department of Health and Human Services
Dates:
Nominations must be received no later than close of business August 16, 2017.
Document Type:
Notice
Document Citation:
82 FR 32711
Page:
32711-32712 (2 pages)
Document Number:
2017-14965

AGENCY:
Office of the Assistant Secretary for Health, Office of the Secretary, U.S. Department of Health and Human Services.

ACTION:
Notice.

SUMMARY:
The U.S. Department of Health and Human Services (HHS) announces establishment of the Working Group.
The Secretary of Health and Human Services is responsible for ensuring the conduct of and support for epidemiological, basic, translational, and clinical research related to vector-borne diseases, including tick-borne diseases.
The Working Group will assist in this effort.

The Working Group will consist of representatives of appropriate federal agencies and non-federal entities who represent diverse scientific disciplines and views.

The Working Group will provide expertise and review all efforts within the Department of Health and Human Services related to all tick-borne diseases, to help ensure interagency coordination and minimize overlap, and to examine research priorities.
This notice also will serve to announce that HHS is seeking nominations of individuals who are interested in being considered for appointment to the Working Group.

Resumes or curricula vitae from qualified individuals who wish to be considered for appointment as a member of the Working Group are currently being accepted.

DATES:
Nominations must be received no later than close of business August 16, 2017.

ADDRESSES:
All nominations should be sent to:
CAPT Richard Henry,
Office of HIV/AIDS and Infectious Disease Policy,
Office of the Assistant Secretary for Health,
U.S. Department of Health and Human Services,
330 C Street SW.,
Room L001 Switzer Building,
Washington, DC 20201

FOR FURTHER INFORMATION CONTACT:
CAPT Richard Henry,
Office of HIV/AIDS and Infectious Disease Policy;
Telephone: (202) 795-7615;
Fax: (202) 691-2101;
Email address: richard.henry@hhs.gov

When the charter for the Working Group has been filed with the appropriate Congressional committees and the Library of Congress, this document will be made available online.

Web site information about activities of the Working Group will be provided when the URL has been identified.
The charter will include detailed information about the purpose, function, and structure of the Working Group.

SUPPLEMENTARY INFORMATION:
Section 2062 of the 21st Century Cures Act authorizes establishment of the Tick-Borne Disease Working Group (Working Group).
The Working Group will be governed by provisions of the Federal Advisory Committee Act, Public Law 92-463, as amended (5 U.S.C. App.), which sets forth standards for the formation and use of federal advisory committees.

The 21st Century Cures Act is intended to advance the research and development of new therapies and diagnostics and make substantial federal investments in a wide range of health priorities.

Under Section 2062 of the 21st Century Cures Act, it is mandated that the Secretary of Health and Human Services establish the Working Group.

The Working Group will be comprised of representatives of appropriate federal agencies and non-federal entities.
The Working Group membership will represent diverse scientific disciplines and views.
The charter for the Working Group has been drafted.

When the charter is approved, it will be filed with the appropriate Congressional committees and the Library of Congress; hard copies of this document will be made available upon request.

The approved charter also will be accessible on line.

The Working Group will be established as a non-discretionary federal advisory committee.

Objectives and Scope of Activities.

The Secretary of Health and Human Services is responsible for ensuring the conduct of and support for epidemiological, basic, translational, and clinical research related to vector-borne diseases, including tick-borne diseases.
The Working Group will provide assistance for this effort.
The Working Group membership will provide expertise and will review all efforts within the Department of Health and Human Services related to all tick-borne diseases, to help ensure interagency coordination and minimize overlap, and to examine research priorities.
Membership and Designation.

The Working Group will consist of 14 voting members who represent diverse scientific disciplines and views.
The composition will include seven federal members and seven non-federal public members.
The federal members will consist of one or more representatives of each of the following:
• Office of the Assistant Secretary for Health,
• the Food and Drug Administration,
• the Centers for Disease Control and Prevention, and
• the National Institutes of Health.
The non-federal public members will consist of representatives of the following categories:
• Physicians and other medical providers with experience in diagnosing and treating tick-borne diseases;
• scientists or researchers with expertise;
• patients and their family members;
• non-profit organizations that advocate for patients with respect to tick-borne disease.

Individuals who are appointed to represent federal entities will be classified as regular government employees.
The non-federal public members will be classified as special government employees.

Invitations of membership will be extended to:
• other agencies and
• offices of the Department of Health and Human Services and
• other individuals as determined by the Secretary to be appropriate and beneficial for accomplishing the mission of the Working Group.
The federal members will be appointed to serve for the duration of time that the Working Group is authorized to operate. Participation of the appointed federal members will be at the discretion of their respective agency head.

The non-federal public members will be invited to serve overlapping terms of up to four years.
Any non-federal public member who is appointed to fill the vacancy of an unexpired term will be appointed to serve for the remainder of that term.

A non-federal public member may serve after the expiration of their term until their successor has taken office, but no longer than 180 days.
Terms of more than two years are contingent upon renewal of the charter of the Working Group.

Pursuant to advance written agreement, non-federal public members of the Working Group will receive no stipend for the advisory service that they render as members of the Working Group.

However, non-federal public members will receive per diem and reimbursement for travel expenses incurred in relation to performing duties for the Working Group, as authorized by law under 5 U.S.C. 5703 for persons who are employed intermittently to perform services for the federal Start Printed Page 32712 government and in accordance with federal travel regulations.

Estimated Number and Frequency of Meetings.
The Working Group will meet not less than twice a year.
The meetings will be open to the public,
• except as determined otherwise by the Secretary,
• or another official to whom authority has been delegated, in accordance with the guidelines under Government in the Sunshine Act, 5 U.S.C. 552b(c).

Nominations:
Nominations, including self-nominations, of individuals who have the specified expertise and knowledge will be considered for appointment as public voting members of the Working Group.
A nomination should include, at a minimum, the following for each nominee:
• A letter of nomination that clearly states
• the name and affiliation of the nominee,
• the basis for the nomination, and
• a statement from the nominee that indicates that the individual is willing to serve as a member of the Working Group, if selected;
• the nominator’s name,
• address, and
• daytime telephone number, and
• the address, telephone number, and email address of the individual being nominated; and
• a current copy of the nominee’s curriculum vitae or resume, which should be limited to no more than 10 pages.
Every effort will be made to ensure that the Working Group is a diverse group of individuals with representation from various:
• geographic locations,
• racial and ethnic minorities,
• all genders, and
• persons living with disabilities.
Individuals being considered for appointment as public voting members will be required to complete and submit a report of their financial holdings.

An ethics review must be conducted to ensure that individuals appointed as public voting members of the Working Group are not involved in any activity that may pose a potential conflict of interest for the official duties that are to be performed.
This is a federal ethics requirement that must be satisfied upon entering the position and annually throughout the established term of appointment on the Working Group.

Dated: July 12, 2017.
Donald Wright,
Acting Assistant Secretary for Health
[FR Doc. 2017-14965 Filed 7-14-17; 8:45 am]
BILLING CODE 4150-28-P

*NOTE-
• I have not wanted, and still do not want anything to do with this 21st Century Cures Act or its federal Tick Borne Disease Working Group.
• This one action has removed more “rights” than it ever thought of giving to patients nationwide.
• However, since it has been established, I feel patients should have a say in who will be representing them, their families and all of the patients who are currently sick and/or soon will be.
• LB / LUCY BARNES AKA TINCUP
• 8.1.2017

Lyme Ninja Radio

LymeNinjaLyme Ninja Radio is a podcast for and about people with Lyme Disease. It’s produced by acupuncturist, Mackay Rippey and his daughter, Aurora. Together they bring you Master Classes with the latest treatment options  as well as interviews with people like you, the Lyme Ninjas who are battling Lyme every day.

Lyme Lives Matter!

lyme lives hereMy first thought when I saw the headlines of how Yolanda was given the ultimatum not to speak of Lyme disease in the Real Housewives of Beverly Hills was sadness and then anger.  Eventually, it was understanding.

Since back in 2002 when my life was brought to a complete halt from Lyme disease, I have seen many Lyme sufferers come and go from the spotlight so to speak.  Many weren’t celebrities; they were just the average Joe or Jane.  They wanted to raise awareness so that others wouldn’t fall into the same fate. However, it’s difficult to live with a chronic illness! Whether it is chronic Lyme disease, diabetes or heart disease. But, I truly feel that those with chronic illnesses such as Lyme disease have a much more difficult time. We don’t get the support, recognition or understanding like those with diabetes or heart disease.  It’s almost as bad as those that have mental illnesses such as depression.  We’re treated like lepers, and many of our friends and family don’t want to hear about it anymore.  Not only do we struggle with a disease that supposedly doesn’t exist, but we deal with being able to live with it and survive without being able to speak out so that others know that it’s no picnic. 

Yes, in the beginning, some of our family and friends get the support because they can see that we are really struggling.  But, with time, that support ceases and some disappear while others begin to wonder if you really are sick and it’s not all in your head. Or, they question if you really are suffering from chronic Lyme disease or some other illness.  Eventually, you are left to decide whether you want to continue speaking about it or continue with life as best as you can. 

For some of us, those of us that have been luckily enough to get healthy enough to work, we have to ultimately decide whether working and sustaining a long-term job is more important than raising awareness and offering support and understanding to those that continue to struggle and remain ill because they are dealing with chronic Lyme disease all alone.  It’s a very difficult position to be in. You want to help those that are too ill to speak up; but, yet, you want to live as normal a life as possible.  It a double-edged sword. 

At the same time, you are struggling with your inner conscience on that aspect; you are seething with anger because again and again you see someone silenced because the public doesn’t want to see the good, bad AND the ugly or controversial. Over and over again, chronic Lyme disease warriors and survivors are slapped in the face with the “it doesn’t exist” and “it’s all in your head” or, “it’s just a ploy for attention.”

“In the fullness of time, the mainstream handling of Chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.” – Dr. Kenneth Liegner

I’m getting very tired of waiting for the day that those that deal with chronic Lyme disease will get the same recognition as those with AIDS.  (AIDS was very real and so is chronic Lyme Disease.) They, too, once were shamed, ridiculed and ignored while many of those that were ill continued to die.  I’m tired of seeing Lyme warrior after warrior dying knowing that they were thought of as crazy and ridiculous. Discarded by society feeling as if they didn’t matter!  

 

Sidenote:  I am so very happy to hear that Yolanda is publishing a book on her battle with Lyme disease! The forces that were just worried about ratings didn’t stop her completely.

The Stages of Grief in Lyme Disease

grief headYou often hear people mention the grieving process when they lose a loved one, go through a painful divorce, or receive news of a terminal illness.  Those suffering from Chronic Lyme disease also experience this process, yet it is usually not referred to as “grief”.  

During the grieving process, Lyme Warriors go through the usual stages of the grief cycle or process which include: denial and/or isolation, anger, bargaining, depression, and acceptance.

When I became ill with Lyme disease in 2002, I went downhill quickly. I was unable to do anything myself, partly due to the damage that Lyme had caused to my central nervous system, which included vision loss and an inability to speak clearly. In the hopes of helping myself to get through it, I kept a journal, which I stumbled upon the other day and began reading. I did not recognize myself from the words I wrote years ago.  Was this really me?

I realized that I had been experiencing the same symptoms associated with grieving, such as anger, fear, guilt, sadness and shock, or disbelief and numbness.  Other physical symptoms that I documented myself as having included:   immense fatigue, insomnia, nausea, weight loss/weight gain, aches and pains, and immune issues.

Following is more information on the stages of grief and how I experienced them.

Denial and Isolation: 

(Disbelief, Shock, Yearning or the thought that “This can’t be happening”)

In the beginning, I isolated myself from family and friends. I kept all of my feelings inside and didn’t speak about what was happening to me. I don’t think they even knew the extent of how badly this disease was affecting me. I often cried, but not openly. Many times, it was during a shower or while my family was either sleeping or gone. I wavered between thoughts of, “This can’t be happening to me” and “Why me?”

Finally, I found a neurologist that believed what I was going through and wanted to help by prescribing IV Rocephin. I was elated. Once I was done with the 28 days of IV Rocephin, I believe I was going to be alright!

Actually, I was in denial that it might have been too late for that.  And initially, I was in disbelief that the disease had not been treated correctly and had probably progressed beyond the point of being curable.  So I went into shock when I found out, and during the three months that I was searching for answers, the bacteria caused a lot of  damage in my body, and later, I realized that it was going to be very difficult to reverse, repair or cure.   I could not believe that after the Rocephin, I hadn’t seen much progress.  I kept saying to myself: This can’t be happening!

Anger:

(Why Me?)

Then, I went through a process of being angry. Why wouldn’t the doctors listen to me?  I was so angry because I knew almost the exact date and time when my health began to go downhill. Why didn’t they believe that it all began when I found the tick and saw the bull’s-eye rash? The doctors kept stating that my symptoms were just a coincidence. Whenever someone asked how I was doing or what had happened, I became so upset that I’d begin shaking and cry tears of anger. Why did the doctors ignore me and treat me like I was a lunatic? I was often told that my symptoms were all in my head.

Another question I’d ask myself was, Why wouldn’t the doctors give me antibiotics for a bit longer?  I told them the symptoms I was experiencing were still part of the early signs of Lyme disease.  If they had listened, I would not have reached the critical point where I had to have someone else feed, bathe and clothe me!  I felt so brutally angry that all they did was call me crazy or label me as “clinically depressed,” or a “hypochondriac” – as well as many other things.   Why did they let this happen?

Bargaining:

(Guilt or What If?)

Then I entered the bargaining stage. My thoughts fluctuated between “if I had only found this doctor sooner” or “if I had done more thorough research and been more demanding,” this would not have happened.  I found myself asking many “What IF” questions, such as:

* What if I don’t become well?
* What if I have to be taken care of like this from now on?
* What if my sweetheart begins to resent me?
* What if he decides that he can no longer take care of me and leave me?

At night, whenever I would cry, I would find myself bargaining with God: “if I get well, I will be a better person” or “if I get better, I will do this.” There were numerous entries in my journal which indicated that I was going through this bargaining stage.

Depression:

(Mourning, loss, regret, fear and goodbyes.)

As part of the grieving process, I mourned the loss of being able to do the daily activities that I had once taken for granted. I felt the loss of being sought after for answers and information by others and formerly  being called the  “encyclopedia.” I mourned that I was no longer highly regarded by others for my knowledge. I cried because I was no longer considered the best at what I did. I felt at a loss because I no longer could remember people’s names after only meeting them once.  Loss, loss, loss!  It surrounded me. 

I read entries in which I said goodbye to my family and friends, in a sense. My rationale for saying goodbye was that they’d be far better off without my bills or having to take care of me; helping me dress,  cooking for me  and  feeding me.  I had actually written goodbye letters. I had outlined specific bequests. 
Fearful thoughts also surfaced many times throughout my journal. These manifested in questions such as:

* Will I learn to deal with the fact that I cannot walk on my own anymore?
* Will I ever regain my night vision?
* Will I ever be able to speak without stuttering?
* Will I ever be able to convey my true feelings, like I once had?
* Will I ever be able to read again?
* Will these “shakes”, that reminded me of Parkinson’s disease, cease?

Acceptance:

(Making peace or achieving a sense of calmness.)

Finally, as I progressed with my treatment, I began to shuffle or slide my way around the house.  Eventually, I was able to walk slowly with some assistance, which gave me hope. I found a sense of peace that I now was walking and getting dressed. The ability to dress and feed myself instilled confidence in me and I began to reach out, to a few select friends.  By listening and accepting me as I was, they helped me to move forward.   With their support and understanding they helped me to understand that I was much stronger than I thought.  

Eventually, those strong feelings of anger began to subside slowly. The “Why me” and bargaining sessions began to lessen. I found myself able to smile and laugh more.  I’d say that I was finally accepting things as they were.

My acceptance of my situation didn’t mean that I was ready to give up on becoming better, but that I was ready to face the future. And I would continue to do all that I could, to improve physically, emotionally, spiritually and otherwise.

Please remember that there is no timeline under which these five stages of grief occur. They are not set in stone. These stages were not meant to define how you should deal with your grief. They are simply a guide to the emotions and feelings that many people with Lyme disease will go through. The stages and emotions can vary from person to person.  We all grieve differently and uniquely, which is normal and healthy.  And the key to true healing involves finally coming to terms with our own personal grief.

As published on ProHealth.

Passionate Lyme Warriors Advocating for Lyme Disease ~ Haley D.

Haley DThis is the second of a series of individuals that stand up for Lyme Disease warriors and survivors.

Lyme bite 🍋💚

May is Lyme Awareness month.

This disease isn’t just another small thing. It takes over your life as well the lives of the people surrounding you. Lyme is the fastest growing disease worldwide, as well as the most misunderstood. It doesn’t discriminate; it infects everyone: Young, old; women, men; rich, poor.

I fight so that one day, Lyme patients won’t have to fight both their disease and the doctors who are supposed to help them. ‪

#‎legalizelyme ‪#‎lymediseaseawareness ‪#‎lymediseasechallenge ‪#‎educationisthebestweapon

Help to give Lyme awareness and ‪#‎takeabiteoutoflyme! Post a photo along with one fact about ‪#‎Lyme disease.

Lyme Disease Challenge

Thank you, Haley, for advocating and for the photo!

Passionate Lyme Warriors Advocating for Lyme Disease ~ Chris N.

This is the first of a series of individuals that stand up for Lyme Disease warriors and survivors. 

Friends and family,Chris N

May marks the start of Lyme Disease Awareness Month. As many of you know, I hold this near and dear to me. It signifies an unspoken unity of suffering at such as dismal level of human understanding for so many of us.

I myself am a victim of Lyme diseases as many of you know. I have been enduring an arduous, taxing and exhausting nine-year battle with Lyme disease. I was once bed bound for 2 ½ years and was a total recluse. Had to say goodbye to the life I once cherished so dearly. Wasn’t sure I was going to make it through some of those chilling nights where you just said your peace and hoped for the best. And that’s not being dramatic; that’s real talk.

But, here I am 9 yrs later, and I’m living. Not at full capacity probably about 50%, but I am out of bed indulging in life’s bounty yet again. And nothing feels better than to go from a dark confined barren room to enjoying life’s simple pleasures yet again. Although I still have long ways to go when it comes to obtaining optimal health, I will take what I have and run with it.

As long as I am surrounded by family, good friends and supportive, positive people, there really aren’t any complaints. I may have to live in the confines of an illness indefinitely and may not be able to embark on life like my peers, but for me just treasuring all the prolific things life has to offer makes getting up each day purposeful.

But here’s really the skinny here. LYME is the fastest growing infectious disease epidemic, but really a PANDEMIC our country has come to know. It’s in all municipalities, and the numbers of annual cases are highly under reported. If there are 30,000 cases reported a year you can times that by 10 easily!

So, basically, what I want to impart here is to be vigilant and don’t think, for one second, you are impervious to contracting this illness. It does not discriminate and like me, it may take years for it to manifest and turn your world upside down. I literally was living a vivacious life until my immune system plummeted and, bam, Lyme took up residence and caused a myriad of other complications for me. You may not always get a bull’s eye rash. Remember only 40% of individuals will have a bull’s eye rash and 60% will never have one emerge. So, if you’re feeling a little off and you pass basic mainstream medical tests such as MRI’s, Cat Scans, spinal taps, blood work, etc. and receive equivocal results pls don’t rule out Lyme.

It’s that time of year where those poppy seed like little bloodsucking ticks are hungry and are seeking blood. All you have to do is simply graze by a blade of grass, and they will latch onto you. Mosquitoes, horseflies, and many other insects can also carry and transmit the disease as well. Your first line of defense is early detection always. So be vigilant! Do tick checks when returning from woodsy areas, even coming in from your back yards. Ticks love warm areas such as behind the knees, ears and head. Watch your pets as they often bring ticks inside your home. Smart to check them as well. Apply proper tick repellent and if you can, wear long socks and tuck your jeans in when hiking. Consider spraying your yards as well.

I don’t want anyone to fall victim to this wretched and oppressive illness. It WILL turn your life around and not for the better. So please don’t dismiss this and just take it to heart. Have my annoying voice resonate in your head when you’re camping, hanging out by bonfires, enjoying summertime activities, etc. Simple precautionary measures can save you a lifetime of devastation.

For more info you can go to ilads.org. Remember Lyme Disease is also known as the great imitator so it mimics numerous other diseases and conditions such as MS, Lupus, ALS, Arthritis, Fibromyalgia, Chronic Fatigue and much more.

Thanks for listening and everyone enjoy the nice weather and all the activities that come with it. If you have any questions whatsoever, reach out to me. It’s my call of duty to help y’all.

                                                                                  ~ Chris N.

Cannabis for Lyme Disease? : What You Should Know

Cannabis plant

I have been asked many times by my sweetheart over the years to consider cannabis for my pain. Each time, I vehemently stated that I did not need it; in truth, I was one of the many that had a very negative connotation with “pot.” I was one of the few that had never ever tried or even considered trying it when I was younger and I hadn’t succumbed to the peer pressure of trying it.

Since my diagnosis of Lyme disease in 2002, I also contracted two other tick-borne infections: Babesia and Bartonella. My biggest obstacle has been Babesia, which also comes with much chronic pain. I found that many of the medications that I’d used throughout the years either never helped to relieve the pain from this infection or I was allergic to them.

I had tried everything, from NSAIDS to muscle relaxants and many other conventional medications. At the same time, I witnessed many others with Lyme who used a daily regimen of morphine, tramadol, or oxycodone and who ended up becoming hooked on these medications. For some, the addiction was so great that they were no longer able to function well in everyday life and so were forever lost in the addiction. I did not want any part of that, so I silently suffered while I smiled, day in and day out.

It took a very bad Herxheimer reaction [1] and the horrid side effects from Mefloquine a/k/a Lariam for me to reconsider trying cannabis. I was dealing with major nausea, weakness, insomnia, horrific night terrors/nightmares, hearing things, hallucinations and wretched headaches, all of which were side effects of the medicine. The hopeless and dark thoughts were also creeping in again. I had used this medication before and it was a big decision to decide to use it again.

It wasn’t until my third round of dosing with Mefloquine that I reconsidered giving cannabis a try. The two times that I had taken Mefloquine in the past had left me very ill and weak and I had to have help from family and friends with daily duties. I was also unable to work for a full month.
This prompted me to look further into cannabis for Lyme warriors like myself. After all, I had been asked many times before if I had tried it or knew anything about the effects of cannabis upon Lyme disease.

I was delightfully surprised and overwhelmed with what I found. I also discovered that cannabis was useful for healing other medical conditions. Never mind that I didn’t understand what the acronyms and terms such as CBD, THC, THCA, and strains like Indica and Sativa meant. Everything that I discovered can’t be described in this article, but I will do my best to simplify it as much as possible.

A few things that I discovered which should be noted by everyone who is considering cannabis; whether it be the oil, tincture, edible cannabis products, topical treatments, or when smoking or vaporizing it:

1. All cannabis oils are not created equal. In fact, many of the ones that I have heard people using only have 0.1% CBD! Oh my! The FDA in its Public Health Focus has an outline of the types of CBD oil and the amount of cannabis that is found in each. [2]
2. Cannabis is not a cure-all. As with many treatments for Lyme disease, there is no one single cure for everyone. We are not all exactly the same.
3. Cannabis and Hemp are not the same. (See table below.)

Hemp

Cannabis
  • A version of the cannabis plant that has almost no THC.
  • It is usually known as industrial hemp grown specifically to be used for products. Grown close together
  • Its uses are as follows: paper, rope, clothing, and oils
  • Average THC 0-0.1% THC or less than 1%
  • Very low CBD
  • Usually the flowering parts of the plant.
  • Grown far apart to promote flowering
  • Average THC 10% range 7-20%
  • Higher levels of CBD

4. CBD and THC. Many Lyme warriors do not want the “high” that comes with cannabis (THC), but just want some relief, which comes from the CBD in cannabis. Although one study found that “the THC/CBD extract showed a more promising efficacy profile than the THC extract alone.”[3]

5. There are different cannabis strains that you should be aware of because not all strains will work for everyone. Also, since Lyme disease symptoms vary from hour to hour or day to day, you may have to use a different strain, depending on your symptoms.[4-6]

6. Strains of cannabis, whether it’s Indica, Sativa or Hybrids, are helpful for different conditions such as insomnia, anxiety, chronic pain, etc. As mentioned in number 5 above, each strain helps each individual differently. [4-6] (See table below.)

Indica

indica plant

Sativa

sativa

Body Mind or Cerebral
Sedative effect Energetic effect
Higher CBD level Higher THC level
  • Usually causes sleepiness
  • Relieves anxiety and stress
  • Relieves pain
  • Relaxes muscle spasms
  • Stimulates appetite
  • Reduces intra-ocular pressure
  • Acts as an anti-convulsing agent
  • Reduces inflammation
  • Relieves headaches and migraines
  • Usually stimulates appetite
  • Enhances creativity and focus
  • Relieves depression
  • Relieves headaches and migraines
  • Reduces nausea
  • Supports Immune system

Hybrids: These consist of varying combinations of Indica and Sativa. The hybrids usually are stronger based as a Sativa or Indica.
Ruderalis is a wild strain of cannabis that is incredibly short and has fewer leaves that are fewer in number and lower in THCs. Strains have been found to possess a chemical profile similar to Hemp. Sometimes it is used for crossbreeding with Indica and Sativa to produce “auto-flowering” hybrid to produce flowers or buds on age rather than the light cycles like Indicas or Sativas.

7. Each person tolerates cannabis differently. Some people may require more while others will require less to get relief. I suggest that you begin slowly to see how you react to that particular strain.

8. All mammals have their neural receptors specifically designed to be activated by cannabis (endocannabinoid system).[7, 9]

As I stated earlier, cannabis is not a cure for Lyme disease. For some, it has improved their quality of life and for others, it has been a godsend. Yes, there are some success stories; Shelley White, author of Cannabis for Lyme Disease and Related Conditions is one of these. Her “Lyme disease was so debilitating that she had endured at least 10 seizures daily for a year and a half. She began smoking marijuana from a pipe and then switched to inhaling it through a vaporizer. Just by doing that, her seizures stopped. Then she decided to go to the next level by using cannabis oil.”[8]

I have also found studies that cannabis was very helpful for relieving symptoms of several medical conditions that I had no idea about. [6, 7] In addition, I also read some studies that contradicted many of the negative things that I had believed about it. I’d love to share all these with you, but, there is only so much information that I can share in this article. Currently, there are 23 states that have legalized marijuana plant use for medical purposes. [5]

Someone once explained to me that cannabis is, in a nutshell, “an anti-inflammatory that helps stop pain receptors in the brain from firing. It is all natural, non-addictive and is much easier on the body (than medications). You can also get a product that has very low THC (the ingredient that gets you high) and which is instead high in CBD’s (the ingredient that helps eliminate the pain).”

As always, my word of caution is to work with your doctor and use your resources to weigh the risks and the benefits before you try anything. I know I will. You have to do what is best for you!
———————————
References:

  1. Jarisch–Herxheimer reaction. : An increase in the symptoms of a spirochetal disease (as syphilis, Lyme disease, or relapsing fever) occurring in some persons when treatment with spirocheticidal drugs is started—called also Herxheimer reaction. Herxheimer reaction. (n.d.). In Merriam-Webster online. Retrieved from www.merriam-webster.com
  2. 2015 Warning Letters and Test Results. U.S. Department of Health and Human Services, U.S. Food and Drug Administration
  3. Johnson JR, et al. (2010 Feb). Multicenter, double-blind, randomized, placebo-controlled, parallel-group study of the efficacy, safety and tolerability of THC: CBD extract in patients with intractable cancer-related pain. Journal of Symptom Management, 39: 167-179. doi: 10.1016/j.jpainsymman.2009.06.008.
  4. Cannabis Strain and Infused Product Explorer. Leafly.com. (2016, March 1). Retrieved from https://www.leafly.com/explore
  5. Latest Strain Reviews Medical Jane. (2016, March 1). Retrieved from http://www.medicaljane.com/category/strains/
  6. A few of our favorite strains: 25 ranked reviews from our critics. The Cannabis Staff. 2014, May 27). Retrieved from http://libguides.dixie.edu/c.php?g=57887&p=371721
  7. Pacher, Pal, Batkal, Sandor and Kunos, George. (2008 Feb 13). The Endocannabinoid System as an Emerging Target of Pharmacotherapy. Pharmacol Rev. 2006 Sep; 58(3): 389–462. doi: 10.1124/pr.58.3.2.
  8. Fassa, Paul. (2014 February 5). Cannabis kicks Lyme disease to the curb. Natural News. Retrieved March 1, 2016, http://www.naturalnews.com/043834_cannabis_Lyme_disease_medical_marijuana.html
  9. Advancing Legal Medical Marijuana Therapeutics and Research. Americans for Safe Access. (2016, March 1). Retrieved from http://www.safeaccessnow.org/medical_cannabis_research_what_does_the_evidence_say
  10. 60 Peer-Reviewed Studies on Medical Marijuana, Medical Studies Involving Cannabis and Cannabis Extracts (1990 – 2014). MedicalMarijuana.procon.org (2016, March 1). Retrieved from http://medicalmarijuana.procon.org/view.resource.php?resourceID=000884
  11. 23 Legal Medical Marijuana States and DC. MedicalMarijuana.procon.org (2016, March 1). Retrieved from http://medicalmarijuana.procon.org/view.resource.php?resourceID=000881

Lyme Disease Treatment Considerations and Their Similarities to Cancer and Chemotherapy

 

I’ve been asked many times, isn’t Lyme disease cured with just 10 days of antibiotics?  And I often have to tell people that it depends.  Does that ever sound like a cop out?  It’s like answering a question about a relationship between a man and a woman: it’s complicated. 
It all depends on what stage it is in when you begin treatment.  If you’d like to know what stage you’re in, you may want to read my Stages of Lyme Disease article that was posted on January 29, 2016.

So I thought that I’d give you some idea of what those that are dealing with chronic Lyme disease and the other tick-borne infections, like Babesia, Bartonella, etc. struggle with when deciding what treatment to pursue.  Most people with Lyme disease aren’t just infected with Borrelia, but also a few other tick-borne infections that need to be treated as well. 

It wasn’t until the other day when I was having breakfast with some friends that I realized that the treatment process for cancer and chemotherapy is similar to that of Lyme disease.  And, just like cancer, death can result from Lyme disease as well as from the other tick-borne infections. 

As with chemotherapy, with Lyme disease treatment, you have to ask some key questions and address certain concerns which may include the following: (1) Learning more about the schedule and side effects of your specific treatment. (2) Getting after-hours contact numbers for your doctor or nurse and (3) Where and how will you receive treatment: will it be at home or at your doctor’s office?

As with chemotherapy treatments, you have to plan when you will begin your treatments.  For instance, I chose to begin treatment over my Christmas break.  Why? Because I could suffer a major Herxheimer reaction. (1)(2) I also had to prepare for the horrid side effects if I chose to take conventional treatments.  Some of the common side effects of these treatments are similar to those that cancer patients experience with chemotherapy. 

Nausea and vomiting: Nausea and vomiting are common side effects of Lyme treatments. The best way to manage nausea and vomiting is to prevent them. So it is important to talk with your health care physician before you begin treatment.  In most cases, medications can prevent nausea and vomiting. There are also some home remedies and unconventional methods that you can utilize for the nausea and vomiting.  For example, ginger chews or cannabis.    

Hair: You might lose some or all of your hair during treatment or due to the disease that you are fighting.  I lost a lot of my hair when I was at my worst due to a Babesia infection.  I actually had to wear a hat or scarf outside so that I would not get sunburned.  The antibiotics that I was using also caused some hair loss as well as sensitivity to sun exposure.   

Dental health: Some of the conventional medications and antibiotics that are used for Lyme disease and the other tick-borne infections can cause mouth sores and a dry mouth. They can also lower your body’s ability to fight infections. So it is a good idea to have a complete dental checkup and cleaning before you start or speak with your dentist or dental hygienist to see if there is anything that you can do to prevent or cull the damage caused by the antibiotics or medications that you use for treatment.  In my case, the plaque buildup and dryness began causing gingivitis.  I also had many more canker sores that, to my surprise, the dental hygienist was also able to help heal. 

Heart health: Some medications used for Lyme treatment can affect the heart. It depends on the intensity of the Herxheimer reaction. As with me, since my biggest problem is Babesia, I often have major chest pains and heart palpitations that can be quite severe and which can cause angina.  As with chemotherapy, it may be beneficial to have your heart condition evaluated before treatment. That way, doctors will be able to tell you if the treatment will cause problems later.

Reproductive health: Some types of meds that are used in Lyme treatment can affect your fertility. In addition, Lyme disease can affect women’s ability to get pregnant and carry a pregnancy. Problems with milk lactation are common; and miscarriages, premature birth, birth defects, and stillbirths are also possible. Also, many women with Lyme choose to not become pregnant out of fear that they’d pass the disease onto their children.  Studies have found that stillbirths have occurred when the disease was contracted during the first trimester of gestational Lyme Borreliosis.  Another report has attributed an infant’s death to a vertical transmission of Bb from the mother, after the autopsy showed evidence of spirochetes in the spleen, kidneys, and bone marrow. [1-3]

Getting help with finances: Before chemotherapy starts, some cancer patients will contact charity organizations for financial assistance, because their insurance may not cover the whole cost of treatment. However, Lyme disease treatments and tests are also not often covered by insurance, so I recommend that people with Lyme do the same and seek out an organization that might be able to help cover the cost of treatment.

Time off Work for Treatment:
When undergoing chemotherapy, cancer patients will often talk with their employer to arrange time off work for treatment and recovery.  Unfortunately, many of us with Lyme have not had the same understanding or support from our employers to even be able to think about doing this during treatment and recovery.  Many of us have tried numerous treatments and have been able to recover enough to hold a steady job and regain our lives.

As with cancer, these are all things that people with Lyme disease need to consider before beginning treatment.  Then, it is time for treatment.  As with chemotherapy, you can receive treatment through an IV via PICC line, or orally.  Then, you have to decide which treatment to go with, whether it is conventional antibiotics or an alternative method of treatment.  As a Lyme disease survivor and warrior, receiving treatment has its own challenges and considerations. Work with your doctor and use your resources to find the right treatment.  Weigh the risks and benefits and do what is best for you.
———————————————-
References:
1.     Jarisch–Herxheimer reaction. : An increase in the symptoms of a spirochetal disease (as syphilis, Lyme disease, or relapsing fever) occurring in some persons when treatment with spirocheticidal drugs is started—called also Herxheimer reaction. ~ www.merriam-webster.com
2.     Jemsek, J. A Detailed Overview of Lyme Disease, 2014.
3.     Markowitz LE, Steere AC, Benach JL, Slade JD, Broome CV. Lyme disease during pregnancy. Jama, 255(24), 3394-3396 (1986).
4.      Schlesinger PA, Duray PH, Burke BA, Steere AC, Stillman MT. Maternal-fetal transmission of the Lyme disease spirochete, Borrelia burgdorferi. Ann Intern Med, 103(1), 67-68 (1985).
5.      MacDonald AB, Benach JL, Burgdorfer W. Stillbirth following maternal Lyme disease. N Y State J Med, 87(11), 615-616 (1987).

 

My Introduction to Lyme Disease

I Will Beat These Beasts: Part 1

40 percentThe Beginning:

After a gorgeous day of picnicking and canoeing, I discovered a tick buried in my shoulder. Who knew that this small insect would change my life? I went to the ER and was given 10 days of Doxycycline just to be cautious. A couple days later, I had the Bull’s Eye rash, mild headaches, minor flu-like symptoms, and a stiff neck. The standard regimen seemed to help because I felt better.
A couple weeks later, I began getting stiff knees. Besides my stiffness, I was experiencing headaches, hot flashes, chills, stiffness, and fatigue. I asked for another treatment of antibiotics and was refused, not only by one doctor, but many. The Western Blot and Elisa tests were defined as negative, only 3/5 bands positive with others described as IND. Despite the tick, all the early clinical symptoms and some positive bands, the doctors refused to think Lyme was to blame. It had to be something else.

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