Contact

Jenna Smith
Lyme Disease Resource
St.Augustine, FL 32084

Email: jenna (at) lymediseaseresource.com

(Visited 909 times, 1 visits today)

47 Responses to Contact

  1. Penny Smith says:

    Jenna

    I read your article about bee venom with interest. Do you know of any practitioners near Boston, southern NH or southern Maine? I have many neurological Sx of Lyme and am not doing very well. And–is bee venom therapy expensive? I am assuming it is not covered by insurance.

    Thanks so much

    Penny Smith

  2. Nancy L. Borra says:

    Dear Jenna,
    I have been a Lyme sufferer for over 32 years. I live in L.A. County CA, however I contracted Lyme in Placer County CA, in 1980.
    Please contact me via E-Mail, whenever the new Lyme treatment protocol book written by both you and the Russian Doctor in Spain becomes available and how, when, and where we can purchase it. ASAP. You have been very informative over the years and we all appreciate your contributions to the Lyme community.
    Thanks,
    Nancy (Sage)

  3. david hall says:

    hey jenna, we spoke on the phone about 2 months ago about your experiences on IVIG treatment…I live in raleigh and still trying to find relief for my wife marilyn . how are you doing? My doctor jemske advised against the ivig?? I have recently been looking at the hansa center in kansas and read the article you published from otto…have you heard from others about this center for lyme and any negative or positive stories…am wondering how sucessful they really are with chronic lyme????Thanks David 9196148250

    • Jenna Smith says:

      Hi David –

      You and Marilyn are in my prayers. Everyone is so different that nobody can tell you on the internet what the right path for your wife is. Dr. Jemsek is one of the best Lyme doctors in the country. If he has examined your wife and knows her medical history and symptoms than he can advise you much better than I.

      It is hard to wait for treatment success when the immune system is beaten down, and/or weak adrenal glands, and stress from pain and lengthy illness…I understand so well! The IVIG made me feel better but didn’t repair anything or cure anything. It was like drinking a cup of really powerful coffee that boosts you up and gives you energy but makes you dependent. As soon as I stopped taking it I slowly reverted to the same pre-IVIG immunoglobulin levels I had before taking it. Others get a longer more permanent solution.

      Also, Marilyn may have trouble eliminating neuro-toxins as I do…that makes recovery take longer also. It is so hard to be patient when you feel nothing is working but your doctor is one of the best in the country. Hang in there!

      Blessings,

      Jenna

  4. Betsy says:

    Hello,
    I was wondering if you could tell me about your experience with Dr. Cindee Gardner. Did you feel make a recovery following her protocol? did you see results? I would really appreciate hearing about your experience. I watched your video but that was when you were first starting treatment. If you prefer you can email me back instead.. Thank you very much 🙂

  5. Gail says:

    Hi Jenna, Just wanted to say thank you for the great articles you sent today!! I was very encouraged by the Niacin and Fuciodan info. It’s so interesting to hear the Lyme experience of others. It manifests so differently in everyone. It’s encouraging to hear even really bad cases have improved. I do think diet is very important. We all have Lyme in my family and one one who eats the healthiest is the healthiest – that’s me! I don’t think it’s a coincidence.

    I have one question for you. How did you learn you do not detox neuro toxins well? Did you have a test to determin that? My son had an HLA DRB, DQB Typing but we haven’t gotten results yet. From what I understand, this will determine how someone handles mold toxins. I’ve read about the perils of mold and Lyme together, but i’m not sure if this test also relates to how one can eliminate Lyme toxins. I’ll look forward to hearing your thoughts!

    Many thanks!

    Gail in sunny Florida

    • Jenna Smith says:

      Hi Gail –

      My LLMD diagnosed this condition based on my symptoms and herxing events…each person is so unique which is why it is so critical to get an expert and not try to guess or self-diagnose. Adding mold or heavy metal poisoning will make any recovery more complex as wil the variety of co-infections. This is why diet and supplements are also important to support and boost you and your family’s immune system. I am sure that each of you in your family have unique symptoms and various strengths and weaknesses…there is nothing easy about any of this but it helps to know we have each other to understand the challenges. It is such an isolating disease! I am glad your diet is bringing you better health. I tell everyone to watch “Fork Over Knives” for inspiration to make positive changes. If my husband can make these changes than anyone can!

      Blessings,
      Jenna

      PS Dr. J. Schaller has many free articles available on mold and Lyme (and other co-infections…very worthwhile to sort through and read those that apply to your situation.

  6. Joe Keleher says:

    Jenna, Thank you for the well research information contained in your entry regarding the lyme disease/ mercury connection. I had symptoms from the Morgellons Disease spectrum and recovered (most MD sufferers test positive for Lyme Disease bacteria). I have published research connecting mercury and MD (some articles are found on my website jwkeleher.com). In the end I believe the root cause of Lyme Disease, Morgellons Disease, Fibromyalgia, ME, Chronic Fatigue, and other of these overlapping symptom sets will be the presence of mercury (mobility, sensitivity and varied mercurial species may manifest in varied symptoms). The recent studies on dental amalgams (see Muller 2012 on pubmed.gov) suggest we are not accurately testing mercury toxicity.

    • Jenna Smith says:

      Hi Joe –

      I was very interested to read the three reports you have on your website and am interested in hearing how you recovered. Perhaps you could tell your story for publication here…I know Lyme has many similar symptoms. I have all kinds of lesions and eruptions, the crawling sensation, the drenching night sweats, sores that won’t heal, but no fibers. Also, I have never had a cavity but I have eaten seafood. When I was last tested I had a very marginally elevated mercury – nothing alarming. Of course Lyme comes from a very specific bacteria – not a cause unknown like MS, CFS or Fibromyalgia.

      I look forward to hearing more from you.

      Blessings,

      Jenna

  7. Donna says:

    My husband was also diagnosed with ALS and has Lyme Disease. Please direct me in reaching Dr. Kosal. I really need to chat with her regarding misdiagnosing with ALS.
    Thanks

    • Jenna Smith says:

      Hi Donna –

      I am sorry for the horrible misdiagnosis. It is a very common accurance unfortunately (not just ALS but MS, RA and just about any kind of disease you can imagine.) Unfortunately I do not have Dr. Kosal’s contact info – try google’s search engine.

      Blessings,
      Jenna

  8. Jacquie says:

    Hello Jenna
    You have a wonderful amount of information here and I was wondering why you don’t also post on Twitter and facebook. There’s so many people who have Lyme that are on Twitter and Facebook, and would appreciate any information you can provide. There’s no need to double post, because you can automatically have your blog post a link to twitter and Facebook directly from this site with each post and update. (not sure I made sense) There’s a wonderful community of Lymies on Twitter desperate for any new ideas about treatment and for support. Thanks

    • Jenna Smith says:

      Hi Jacquie –

      I would appreciate any technical expertise you choose to share. I had it all set up at one time and when I updated WordPress it all stopped. Computer problems have set me back several times and due to my illness I struggle to get the research done properly and published along with my treatment and minimal family commitments…do you know of the best plug-ins for auto-posting from WordPress to Twitter and Facebook?

      Thanks,
      Jenna

  9. Hi Jenna, Hi all
    I thought I would let you know that we will soon start a clinical trial combining different anti-bacterial treatments to control the infection and Stem Cells to boost the immune system and repair the damage caused by a long infection. If you are interested, you can read more here : http://www.a1stemcells.com/lyme-disease-treatment-with-stem-cells
    We have 25 places and the trial will last 6 weeks.
    Based on the initial results we have had before launching this study, we believe this combination of treatments can represent a major breakthrough in the treatment of Lyme disease.
    I hope this is helping.
    Best wishes
    Marina

  10. Brandon Giaquinto says:

    Hello Mrs. Jenna Smith,
    My name is Brandon Giaquinto. I am a fellow Lyme’s victim from Minnesota. I am now writing a research paper on the Lyme’s controversy and I am hoping to get some testimony from you about your experiences and problems you encountered and, with your permission, use that info in my paper. If you agree, I would like to communicate via email. My email is bgiaquin@gmail.com. That you very much and have a nice day.

    Brandon Giaquinto

  11. Carrie Lambert says:

    Hi Jenna,

    I am so glad I found this wensite because I am at the end of the line with all this Lyme’s crap. My brain is getting worse by the day. I do pray and claim healing over my body everyday and I know I have to stand on God’s word that by the Stripes of Jesus, I am healed! With that being said, I know he gave us doctors for curing as well. I am on the Cowden Protocol right now for Lymes and the brain fog is unbearable. I started the brain cleanse and rashes appeared all over my face, even coming out of my eye. I know I am herxing but its a little extreme. I have 80% of lyme’s symptoms in my brain. My doctor works closely with Jemsek and he wants me to do antibiotic therapy after trying everything else. However, I have major Candida and I can not use the bathroom (#2) on my own anymore. I have to use a cofee enema/plain water enema every night to use the bathroom. I have called Dr. Klinghardt four times in two months and they will not return a call. I have seen on other sites that this is happening to a lot of people. Any advice for me would be appreciated.

    Thanks,
    Carrie

    • Jenna Smith says:

      Hi Carrie –

      Get on Nystatin for the candida and cut back as much sugar as possible. Don’t stop Jemsek’s treatment but make sure you are taking something to treat the biofilms. I take Serrapeptase by Nutramedix – 2 grams per day.

      Blessings,
      Jenna

    • Janet Bollinger says:

      Who is your doctor?

    • GEOF says:

      1984 april got lymes i am born again spirit filled christian, june or so song came to me about Habakuk never read about him, when i did i was blown away .”i will work a work in your days it will be steafast and surely come when you are reproved .(firey trials. LYMES) got call we want you as national unsung hero people mag ,6 months later same thing newsweek mag 3rd year same thing readers digest. on the road again 2 times 20 yrs apart tons of news tv cameras here,then 1987 nov 9 was Honered at White House president Raegan many more 09 jefferson award D C for 50 yrs many volunteer works 150 selected i was number 1 VEts day Connie Chung did story after week filming….now can i even get a newstory about my 31 yrs lymes 12 times. the yrs bed ridden or chair ridden fatigue months each time barely walk. yet the lord Showed me trials , Habkuk says tents of Cushan in affliction i live out of Cushing 65 people town…1984 on i read everything i could find on JOB…= similarities my life ??I lived thru 2 suicide attempts 70s it was Nam ptsd. so since Christian 1983 i know thou shalt not commit murder….Geof

  12. erin mcmanus says:

    Hi Jenna,
    I was wondering if you could tell me how to go about purchasing a water ionizer. Where do you get one? The prices seem to vary greatly as well. Any info you can provide would be great. Thank you so much.

    • Jenna Smith says:

      I bought mine on ebay – I always check the customer reviews on Amazon first and then compare prices. Usually ebay wins because you can buy a unit that may be used once or the box is opened, but sometimes Amazon has the best price. Amazon now sells used items so it is worth checking both places. Hope this helps!

  13. GEOFFREY STEINER says:

    BLESSINGS :mid mn. my ranch 30th this april ,got lymes 12 times,,disabled vet planted vietnam memorial forest 34th yr. yet even with bulls eye and chest rash 5 times vets 3 hosp here refuse testing nor never treated one blood work 91 =neg yet u of mn treated 3 yrs.orals ,78 my 3rd college got into nutrition which today i would be worse with lymes if immediate antibios and nutrition vit etc. i have had well years with relapses yet getting new ticks =sick,my dog got lymes anaplasmosis my horse got lymes,91 temp blindness 2nd time lymes oct while still on antibios since aprils lymes… 8 last times tick lymes no more bulls eye nor rashes.in the center of minn where i live there are many lymies ,erliciosis is a big one here .24 yrs lymes advocate i have researched read tons of info,my battle still rages on,I have to use my va dis to pay treatments hosp and gas etc, because vets drs say 14 days anti your well..ifi can be of any help let me know ?Chaplain geof cushing minesota.

    • Jenna Smith says:

      Thanks for writing Geof –
      What a nightmare you are living through! In my opinion medical practitioners have gone beyond medical malpractice to actual discrimination. It seems the only way to get solid medical care is by a doctor who is willing to risk peer pressure and being ostracised by fellow doctors…I would hope that after so many years of illness and suffering that you would be able to find a Lyme-literate doctor, or at least one who is open minded. I am glad you have financial help through VA (did you read my blog post about the Borrelia being spread by sand flies in Iraq? Researchers are well-aware of Borrelia being resistant to antibiotics, it is unreasonable and a sad state of health care when this epidemic is not only being ignored but ridiculed by the very people who should be leading the charge for help.

      My horses and dogs all got Lyme as well – one horse had to be put down due to Anaplasmosis going into the brain (it turned the sweetest and safest school horse into a dangerous animal). There is a way for you to help – email me at jenna@lymediseaseresource.com. It may help you too.

      Blessings,
      Jenna

      • GEOF says:

        no did not read about sand flies but knew about it first gulf war 2005 or so i contacted disabled veterans magazine since 69 i am disabled nam usmc vet. i saw story gulfs weird symptoms . informed them i see lymes symptoms ,So the got vas to test many most had lymes.not sure what follow up they did.MY va dr in 1995 treated me for lymes relapse (from 91 next lymes was 2004) then va director said stop costs too much. glaxo donated case my va Dr put in my lap now treat yourself . i quit this va idiots. anytime come to my new practice mpls….

  14. GEOF says:

    having lymes 1984 till 89 first treatment planting vietnam tree memorial since 1980 my 100 acres ranch,never heard of lymes. got it april and nov 91 was in hell. no va hosp would treat test. u of mn treated 3 years orals. 2013 now 12 times lymes once babesia.advocate since 1990. center of minnesota. 100 % disabled. 90s into 2000 news did many stories on me…..yet never once contacted by CDC etc. i eeed once info told them of my 08 nam trip malaria came home planting trees got tick spring = lymes… 06 lymes i wrote letter to president Bush (same year he got lymes camp david =no reply) about vets hosp here 3 of them as disabled vet their drs 5 over yrs refused testing nor treatment after getting lymes . tested blood yrs back yet i was on doxy 100 2 x with flagyl. they said (you dont have it ) yet 1995 va dr treated me and 97 .says chronic on bottle. i pay gas hospital trips treatments. feb last year sent e to my senator ,saw on caller id they called nothing. retreated feb to oct relapsed bad then…My point ih ave been kicked around told its all in your head etc. i am psychotherapist. i have documented meds treatments, kept calenders of symptoms carried concealed tape recorder to vasdr s crap. symptom logs since 1990 with treatments yes i got better had many relapses , i have neighbors all over lymes erlichiosis, babeisa and like my dog lymes anaplasmosis. yet va my fibro dr said “we dont think you ever had lymes” i am open for any investigative reporter to come see my records andt ons of lymes books studies etc. can any of you help ? my 25th year lymes advocate Minnesota many Drs come to me for treatment proticals their chronic patients. ???Chaplain Geof Steiner Cushing Minnesota /..livemem@brainerd.net God Bless !!!!

    • Jenna Smith says:

      GEOF – If you can get a doctor to prescribe the blood culture from Advanced Lab Services and then maybe you could raise the $925 to get the full polyclonal test (which tests for more than one species) with DNA verification – which makes it $925 instead of $675, but then you would have proof of your infection.

      I have thought about starting a group fundraising campaign to aid people just with diagnosis and since Advanced Labs is 94% accurate, it is the closest anyone can get to a clear diagnosis. I have talked to other vets who suffer and it is so, so hard! My heart goes out to you with the struggles you have had and I suspect you will reap all the kindness and bravery you have shown!

      I just saw a quote yesterday you may like…”Don’t pray for an easy life. Pray for a hrd life so that you may become strong.” You are a strong man Geoff –

      May you be blessed!
      Jenna

  15. Keith says:

    Hi Jenna,
    Is it possible to email chat with you re my Lymes disease privately and without publication?
    I have some exciting news BUT cannot risk it being made public yet.
    Kind regards,

    Keith
    Johannesburg
    South Africa

  16. Robert James Lane says:

    Hi Jenna,

    This is Robert L in New York City. I’m trying to get connected to others in the Lyme Community, whom I could chat with from time to time about various Lyme Plus issues. (Lyme Plus: Lyme and all other co-infections.) Mostly I’ve been too ill to even reach out much to other Lymies. Working on it.

    A post I read here mentioned bee venom therapy. An LLMD I saw recently in NJ introduced me to this therapy; it is commonly used for Lyme at her Center. Advised is a long course of injections into the adrenals.

    I’m actually arranging to have another LLMD I’ve seen in NYC administer the weekly injections per her instructions. I live in NYC, and it’s a long trek to get to her in Morristown NJ.

    As I’m going thru rather severe herx as I type these words, hope I’m making sense. Will try to post any useful comments about my experiences, as I learn more. Don’t know if I entered these comments in the right place or not.

    Hope you are settling in to your new home in Florida.

    Best, Robert ****

    • Jenna Seaver says:

      Hi Robert – still unpacking but feeling well enough to drive around town to run errands, lift heavy boxes as I organize etc. I am so excited to be starting over!

      Anyways, I had a near death experience with a bee sting when I was six and now wonder if it was an extreme herx as I believe I have suffered from Lyme and Bartonella at the least since birth (or close to – my father grew up in Smithtown just miles from Plum island and I have wondered if he didn’t infect my whole family as my 4 siblings and Mom all have symptoms – one sister is completely disabled but the rest just adjust their lives to the symptoms).

      Anyways, all that to say I have been extremely nervous to try bee venom therapy myself but suspect it is highly effective and respect Dr. Klinghardt who has recommended it for years. Keep us posted on your results!
      Blessings,
      Jenna

  17. Susan C says:

    Hi Jenna,
    I read your post on IVIG. I saw Dr Katz this summer and am due to start IVIG when I get a port. I have poor veins and he won’t give me a PICC line- even though I have had one of those and did fine with it. The problem is, I really DON’T WANT a port and the scar on my chest. A friend got a port on her midriff and that would be fine except no one in my town wants to install one of those. Do you know any other good doctors (other than Katz) that prescribe IVIG so I can try to get a PICC line?
    Thanks so much!

  18. Pat says:

    Just a question regarding Tinazadole since I would rather use a natural remedy in my lyme treatment. Is there something else I could use in lieu of Tinazadole or have heard works as well?
    Also, do you know of anyone who has used the TVAM procedure for thermal control issues? alot of internal heat problems lately and no way to cool down.

    Thanks

  19. Joyce M says:

    Hi Jenna,
    My 7 yo son and I suffer from food sensitivities and asthma. I have just started going to an ND for help. I have gone to many doctors over the last 12 years and have not had any success. Anyway, on a whim I took my son with me and had him see the doctor for a Zyto scan. The Zyto indicated that my son has Lyme Disease, so the doctor wanted to scan me for it as well. I tested positive, too. The dr. said I probably gave it to my son while pregnant with him. (BTW, I have a 5 yo daughter who doesn’t have any health issues whatsoever.) My husband doesn’t believe the ND, saying he is a fraud – how can the Zyto scan show we have Lyme, etc. I have been scouring the internet trying to find out if our symptoms (food sensitivities and asthma) match the symptoms for Lyme and I am not convinced they do. So, I think maybe I should have my son tested by a lab to make sure, but these tests are not cheap (we have no insurance). I am not sure what to do and which test to choose. I am tempted to forget this all happened, but I would never forgive myself if my son started having Lyme symptoms in the future. What would you do in my situation? Does Lyme affect people like this? We have both had a few tick bites in the last few years, but have not had any rashes. We have no joint pain, fatigue, etc.

    • Jenna Seaver says:

      Hi Joyce – I am sorry you are going through this, but be thankful you and your son don’t have symptoms. If you can’t afford lab testing then you’ll have to watch for symptoms, but if you can manage to get some funds together I recommend the blood culture from Advanced Lab Services – it is 94% accurate and tests for multiple species. The western blot is less expensive but is controversial. Let me know if I can help in any way –

  20. Erica says:

    This is my first time visiting your site. I am finding it very helpful. I believe my 14 year old son has Lyme disease. He has been ill since August 2015 and we had camped in July 2015. He had a rash and his time line of symptoms match Lyme almost perfectly. When someone suggested Lyme I thought we had finally found what was destroying him. We live in Texas and have been told by numerous physicians (including an infectious disease doctor), that Lyme doesn’t exist in Texas. Today I sent a sample off to an online site to have him tested. I am struggling with it all and making myself crazy. My family doesn’t really believe us and the majority of our friends think it is all in his head. There are things that have happened in our lives that could have caused fibromyalgia from PTSD, however he had the rash. I don’t understand why they simply refuse to test him, even if it was just to shut me up. Whatever the result of this recent test, I know we still have a long road ahead of us. I am not even sure what my next step will be once the results are back.

  21. mary says:

    Hi Jenna, thank you so much for all of the wonderful information. I have been trying to find the best colostrum that has not been processed. I did order the one that you suggested. I know of a person who was using raw colostrum from a farmer friend of hers and she was well after 3 months of using it. she was bed ridden for 5 yrs. I have chronic lyme and have been bed ridden for nine years. I am hoping and praying this is the solution for me.

    Is this colostrum processed that you recommend? I did not see anything regarding that on the label.

    Thank you,

    Mary

  22. Lonnie L Walker says:

    With regards to not getting congress to pass appropriate legislation to get proper treatment for lyme disease,

    Max Planck (April 23, 1858-October 4, 1947), was a German theoretical physicist who originated quantum
    theory, which won him the Nobel Prize for Physics in 1918. One of his more fames quotes is that:
    “A new scientific truth does not triumph by convincing its opponents and making them see the light,
    but rather because its opponents eventually die, and a new generation grows up that is familiar with it.”

    It’s to bad that we have to wait for all of are political opponents in congress to do the same. I’m 73, have
    lyme disease and Morgellons and don’t think I can wait for all the incompetent ‘@$#ole$’ to die off before
    any meaningful legislation is passed and I kick the bucket.

  23. Lexi says:

    Hello,
    In one of your blogs you mentioned that there’s a great LLMD in Jacksonville, would you mind providing me their name? I’m from Tallahassee and I am desperately looking for help. Thank you!

  24. Hi Jenna

    Tried sending you an email, thought I would post here as well. I have advanced Lyme, found out too late due to extreme poverty. I developed what I thought was CRPS in my foot (and now leg / body) as the symptoms match perfectly, but a whole bunch of unexplained situations and an ally who lent me money for testing led to heavy research, and the more I learn the more I am convinced that CRPS is a complication of Lyme.

    In any case, it doesn’t really matter, what matters is that I am so bad now I can not move or exert myself without making my symptoms worse. And the symptoms are bad. An article I published in Canada’s national newspaper http://www.theglobeandmail.com/life/health-and-fitness/health/what-its-like-to-live-with-off-the-charts-chronic-pain/article30467475/ barely scratched the surface of my experience, which has been sheer torture, anywhere from 14 to 24 hours a day, going on years now. LDN looked promising until I found multiple references to aggravated glutamate production in untreated Lyme. There is no help here in Canada.

    My story is complex so not sharing much of it here, but was hoping someone could tell me of a physician here in Toronto who will take me seriously. Not looking for treatment, as I know their hands are tied and Lyme literacy here very poor, I need a heavyweight. So really just looking for a doctor to help me get tests, someone who is not going to treat me like a hypochondriac, and possibly write a referral for me. Which leads to my next question. What can you recommend for treatment (not products, but a clinic or doctor) in the States that focuses on highly specialized or complicated cases? Much of what I’m reading online won’t work for me. I have found a place called Envita (envita.com) in Arizona that boasts multiple practitioners and highly advanced testing. Have you heard of it? May I ask your opinion on it? By email or phone?

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