Reach Out

REACH OUT – YOU ARE NOT ALONE!

The longer you suffer with chronic Lyme disease, the harder it becomes to battle the depression that follows such intense suffering.

You feel alone, but you aren’t.  We each have our unique Lyme soup of co-infections with varying symptoms and degrees of abilities participating in the life we had before our illness.

At first, you will cling to hope that there is a cure, but eventually like me, you will either be told, or figure out on your own through experimentation, that there is not currently a cure for chronic neurological Lyme disease.

Where does that leave us?

For many, suicide is the answer. There are not any hard facts on the number of suicides connected with Lyme disease but we know that any attempt to count would be grossly inaccurate due to the trouble diagnosing Lyme to begin with. However, we do know the number is significant.

Praying for death is the same despairing state of mind but fortunately keeps us in this world to support one another and hope for the discovery of a cure.

Unfortunately most of us feel so guilty about such dark thoughts that we keep them hidden. This desperate mental state and dark secret further alienates us from those who are in the best position to help; fellow-sufferers.

Reaching out to others is the best way to find comfort and hope.  Unlike people who don’t understand and constantly question the validity of our illness, there are thousands who DO understand and are happy to sympathize.

Facebook has many ways from small groups to large groups to stay connected to people who share your concerns.

Regardless of religious beliefs, Lyme sufferers need to have faith that a cure will be discovered, and we need to reach out to one another. The best way to do this while maintaining personal privacy is to join a forum. Search for the Lyme forum in your state using Google. Most of them are on Yahoo and some states have more than one.

TIP: With the Yahoo forums and most social media formats, you can sign up for a daily digest of posts to be emailed directly to you, which saves you from having to log-in to each group to participate.

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19 Responses to Reach Out

  1. Tonia DeVries says:

    I have had Lyme disease since the 60s. Thank you for your input. I know how hard it is to concentrate long enough to writing coherently. Job well done. Tonia

    • Jenna Smith says:

      Thanks so much for your encouragement! It is difficult and time consuming but helping others is good therapy for depression! Also, we need to stick together – right?

      Blessings,
      Jenna

  2. Curt says:

    THANK YOU for saying it so directly… “Unfortunately most of us feel so guilty about such dark thoughts that we keep them hidden. This ….” I did that for years until it was almost too late. The fact that I have children, and saw the effect on family after a neighbor took his own life, prevented me from doing so. Finally, a caring (and suspecting) physician asked me point blank and kept probing until I admitted these dark thoughts.” However for me, all of the Rx we tried had significant side effects. So what worked best for me was plain old counseling. Just getting it out in the open was a huge relief. I still battle Lyme effects everyday, but have the will to keep fighting, and its better than it was at its worst.

    • Jenna Smith says:

      Thanks for your comment Curt – I have found in my research that suicide is the number ONE way people with chronic Lyme die. I lay the blame on physicians who have made so many feel crazy…as well as the disease the ebbs and flows so strongly. I am sure you will agree that some days you feel like you can manage and other days you feel more distraught in the same way that the pain in our joints, organs and other parts of our body can go from 2 to 8 in a matter of minutes. It is so hard to describe that to someone who hasn’t experienced chronic Lyme – it sounds crazy, but it is the life we have to struggle with. I am glad you have support and wish you full recovery!

      Blessings,

      Jenna

  3. sandra Van Der Poel says:

    I would like to become part of tgis website,Jenna

  4. Amelia says:

    Hi Jenna hope you are settling into your new home and move went well. Since we conversed last time, my status has declined…polymyositis has set in; I can hardly walk due to pain in legs and shoulders. Did you experience this? As well reading dr Horowitz book you highlighted. Such a quandary we are in ! Reach out when you can. Love Amy atlanta

  5. Heidi says:

    Hi. I have chronic Lyme. It appears to have caused a neuralgia that is aggressively getting worse over time. It is worse than cancer I had years ago. I have ongoing disabling intense pain deep in my right ear and right cheekbone and eye. I was treated when diagnosed in 2012 with a pic line of rocephin sp? antibiotics. But, still ended up with this. I went on three antibiotics all last winter , that didn’t work. It has stolen my life and I am heading broke from so many doctors dealing with my ailments and medical premium costs, minimal disability income , and unable to work or even be reliable for part time. I am hoping someone may know something about this extreme neuralgia and possibly have a success story to treat it?

    • Jenna Seaver says:

      My experience with chronic neurological Lyme disease included over 100 symptoms at it’s worst including severe neuralgia, and I also went broke from fighting the disease.

      I tried 2 courses of IV Rocephin (approximately 8 months each time using a direct port) and oral antibiotics (over 5 months of Doxy at the start of my crash, 3 different types of antibiotics when first being diagnosed by a LLMD), and 6 months of bicillin shots. However, I continued to get worse and until my doctor tried 2 grams of oral penicillin daily which I have been on over 2 years and I have improved consistently month after month with every expectation of a full recovery.

      Each person is uniquely different with varying underlying health strengths and weaknesses, co-infections and stress factors, but we should all have hope that with the right doctor and correct diagnosis we can recover a quality of life that could even exceed that which we experienced previous to the onset of our illness.

      One key factor to getting through this is to be patient and not give up on a treatment too soon.

      Blessings,

      Jenna

  6. Marcia says:

    Hi Jenna – I love what you’re doing here and I learned a ton from you when I was first diagnosed four years ago.

    I was “cured” 2 years ago but have flare ups from time to time. I tell myself, I must be fighting a cold or I must have eaten something I’m allergic to … Did you ever think you were cured and then found out you were not?

    Virtual hugs 🙂

    • Jenna Seaver says:

      Congratulations! How did you do it?

      I am still on my way to a total cure and thankfully at the tail end but still suffer some relapses. I understand the fear that comes from Lyme-like symptoms but if you still had it (Lyme) you would slowly be getting worse. I think it’s great you were cured and as long as you take good care of your health you should be fine!

      Best wishes!

      Jenna

  7. Joy Lynne says:

    I’m so glad I found Jenna’s blog. I’m exhausted after struggling to survive 21 years with Lyme, and I believe I contracted Powassan along with it. I’m in New Jersey. Does anyone know where I can get reliable testing for Powassan, possibly within a couple hours’ drive?

  8. Dr. Jess says:

    I’ve decided to take a leap of faith and share my personal life experiences and struggles as a way to help support my own spiritual, emotional and physical healing journey at http://drjess.me/

  9. Adrienne Greenfield says:

    I have heard that Dr. SZULC in NYCity cures Lyme as well as other problems. He does a SPECIAL blood test on the first appointment to discern what treatments to do. This blood test is cultured in his office and the results are given the next day. He, however, does not test blood unless you actually come to NY. I am unable to get there from Florida due to a bad back. Does anyone know how to get this blood test done another way? Any feedback on this doctor? My friend who lives in NY went and raves about her cure because of him. She said she was in VERY bad shape when she went, and now is cured and vibrant.

    Feel free to contact me at edgreen100@aol.com
    Thanks,
    Adrienne

    • Diane Solari says:

      Hi Adrienne,

      I just came across this post as I am collaborating with Jenna on a blog article and thought I could help answer some of your questions. Full disclosure, I work at Innovative Medicine – a company that is affiliated with the New York Center for Innovative Medicine, the medical office that Dr. Szulc is the medical director of. The blood analysis you’re referring to is known as B.A.H. (Bioresonance Analysis of Health), and while we wish we had other centers and doctors across the country doing this to help people like you, as of now, the only place utilizing this advanced system in its entirety is in NYC. There is also a physical evaluation and other tests performed that are required, which is why all assessments must be in person. I emailed you further details, but I hope this has helped!

      – Diane

  10. Hi Jenna’s Lyme Blog community, I wanted to reach out because I work for Attorney Nate Preston and he is offering a $1000 scholarship to a student who has suffered from chronic Lyme Disease.

    We would love to make this scholarship available to you all an anyone you may know who is attending college and has suffered from chronic Lyme disease.

    Here’s the Chronic Lyme Disease Scholarship criteria:

    Candidates must be high school seniors, who have suffered from chronic Lyme Disease. Must be accepted to or currently enrolled in a college or university in the United States.

    They must apply to the contest via the website: http://youraccidentlawyer.com/scholarship/

    The award will be based upon academic achievement, school & community activities, and an essay of 500-1000 words describing how Lyme disease has affected the student’s life, especially in regards to their values and educational and career goals.

    God Bless you all and I hope someone out there is able to benefit from the scholarship.

    Sincerely,

    David Haskins

  11. Carole Houle says:

    Good morning Jenna I really like your website i think u are a wonderful inspiration i have been dealing with Lyme since 1998 I have been to many md.s try a lots of protocols it seems that nothing is working anymore I have babesia severe nights sweats it as been years of it. Now have a hard time hearing buzzing in my ears is pretty bad. So I think that I will stop all the meds. I am on azitrromicin and malarone and supplements lots of nerve pain also have a lots of lesions on the brain. My Dr is not a LLmd but he knows a lot about Lyme having Lyme himself would like to know if you could suggest some L.l.m.d.? I live in Vermont code is 05903 but also am close to Newhamphire.
    Thank you so much.

    Sincerely.
    Carole. God blessed u.

    • Jenna Seaver says:

      Hi Carole – When I lived in Maine I found that my local doctor was the best as he really worked with me in a very personal way however I have been to most of the top LLMDs in New England over the last decade – I recommend Dr. Mulcahy in Maine or the Spaulding Clinic in Boston – the docs in NH and VT are all knowledgeable but not specialists like you find in NY. I hope that helps. I have similar symptoms as you and find that eye and ear pain are some of the worst! You may try food grade DE for parasites – I got a real boost to my treatment when I started treating parasites – there are so many benign parasites that you would never notice but when you have Lyme they act as hide-outs for the bacteria – Dr. Cowden suggests staying on DE for life!

      Hang in there!

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