About Me (Lyme_Inside)

Me and my little buddy Dom at the pumpkin patch.

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About Me (Contact Info)

Hello!

My name is Bryan, I was born and raised in Rodeo, California and later moved to Vacaville, California where I live now. I have been bitten by many ticks. Right now my old life is gone and I am adjusting to my new ill self. I don’t get out much and pain is my friend. I have had Lyme mostly my whole life so after being misdiagnosed for all those years it is pretty much too late for antibiotics to help my situation.

I suffer from: Chronic/Late-Stage/Stage 3 Lyme Disease, (Co’s include) Bartonella, Babesia,  Protomyxzoa Rheumatica, Lupus, Immunodeficiency, Postural orthostatic tachycardia syndrome (POTS), Possible Gastroparesis (GP), Fibromyalgia, Chronic Fatigue (CFS), Mycoplasma pneumoniae, Chlamydophila pneumoniae, intestinal parasites, Epstein Barr Virus (EBV), Radiculopathy, herniated Discs in my neck & back C5-C7, chronic Knee pain (non-lyme), Spinal Stenosis (neck), spinal cyst, Hypothyroidism, carpal tunnel, Insomnia, IBS, and more. Seems like every blood test we find something new. But I love life and I will not let these illnesses define me. I love all the little things in life.

I am here to share my story, my journey to help others and also use this blog as a personal journal to keep track of my life. I graduated from college with a 3.43 GPA but now I write like I am in the 8th grade. I find it hard to express what I am trying to say and I cannot think of complicated words anymore. It is hard to complete a sentence. I have dyslexia brought on by the my Lyme disease. Spell check is my friend. I have nobody to edit my blog so I will try my best to make sense and keep the blog easy to read.

Thank you for reading.

My contact Information:

Add me on Facebook

My Email – lymebry@gmail.com

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60 Responses to “About Me (Lyme_Inside)”

  1. Kimberly Thomas October 12, 2011 at 6:05 pm #

    Hi Bryan
    As I was reading your story, I could feel the tears coming to my eyes for the both of us. Who would think such a small animal could destroy the body in the way it does. It is amazing to me how uneducated the physicians are regarding this disease. I am a Floridian, I decided to move to Texas for a change with the exception that lyme’s disease was not exactly what I had in mind. I too had a foggy mind but that has been restored for me. I am left with neuropathy of both hands and feet, I have major spinal damage, I had left sided paralysis but after surgery was left walker dependent. I have pain everywhere and have zero energy! This disease is quickly becoming an epidemic and the medical society is going to have to wake up quickly. I also have eye neuropathy. Be encouraged, sadly you are not alone.

    • sliccc1 October 12, 2011 at 11:02 pm #

      Thanks Kimberly. It is like living in a nightmare. I wish you all the best and if you ever want to chat just let me know.

  2. Sai May 18, 2012 at 11:17 am #

    Bryan – your writing reads fine to me (but as a lyme-colleague, my word and mental skills have also taken a huge hit). Being able to maintain this blog and get your story out for others to read is a wonderful gift. And would have been too difficult for me in the earlier days of my lymelife. I believe all of us who have chronic Lyme and associated TBDs and collateral damages need to keep screaming our stories publicly. Not for sympathy or pity, but so others don’t take tick bites frivolously; or neglect to consider that Lyme etc could be the real cause of their mysterious syndrome (e.g., chronic fatigue, fibromyalgia, MS, Alzheimers etc).

    • Marie Sprowl November 9, 2013 at 10:00 pm #

      Sai, I always talk and repost about Lyme for the sake of advocating and warning others. I probably sound hysterical half the time; but like you said it is NOT for pity or anything, other than to warn the masses. In fact, I’m the type to keep things to my self. But Lyme is way too horrible to not shout from the roof tops. I actually feel it would be a public disservice if I kept the details to myself.

  3. Tosha Brownell May 18, 2012 at 7:45 pm #

    I feel for you and your family girl! My daughter Lori Brownell (rodeocowgirl131) has Lyme Disease and it has been a HUGE struggle. Girl, we will fight this together and you will get through this. Keep up the great work on spreading the awareness!! You can also friend her on Facebook – fighting chronic lyme.

  4. Sue October 19, 2012 at 9:08 am #

    Hi! My name is Sue, and I’m from SlimKicker, a fitness/diet app and online website. I saw your blog today and it captured my interest!

    I’m contacting you b/c we’re about to release a fitness tracker (similar to FitBit) early next year, and are looking for bloggers who would be interested in getting 1 for free to review when it is out (negative or positive).

    Would you be interested in doing this? You can email me at: sue (at) slimkicker (com) with ‘Review’ in the email heading if you are.

    Just to let you know, our online website SlimKicker basically turns your fitness/diet goals into a level-up RPG game. The tracker will work with the website, and allow people to track calories burned and number of steps they walk automatically. The more they exercise, the more points they rack up! That’s basically how it will work.

    Anyway, hope to hear back either way…

    – Sue
    P.S. You can choose not to display this comment as this is more of a private comment 🙂

  5. Kelly Christensen November 11, 2012 at 10:54 pm #

    Hey! I am so glad I came across this site, it is very informative and helpful!! Keep up the great work and take good care of yourself. We can fight this together! Feel free to add me to FB if you would like to chat. (Kelly Christensen)
    Be well!

    • Nick Naso December 7, 2012 at 9:02 pm #

      Bryan and Kelly or anyone else. I’m in the same boat. I’ve been sick for more than 10 years now and at 25, I feel like a 95 year old man. I alternate between feeling OK and feeling terrible, but never good. Headaches nearly every day. Tired all the time. Having trouble meeting the expectations of everyday life. After getting extremely sick a few years ago without health insurance and after several ER visits, a doctor had the bright idea to test me and it came back 8/10 bands on the western blot for Lyme. Several doctors later, and I am still sick. Too many slow diagnoses, idiot doctors who think I have Munchhausens syndrome or worse. So little hope. So little support. So much anger. So much pain. My name’s Nick Naso from Manchester, NH. If you want to trade ideas, info, diagnoses, support, or anything else, add me on FB.

      • 49erBry December 8, 2012 at 2:03 am #

        Hey Nick nice to meet you. It is such a crazy journey isn’t it. I hate that no doctors are willing to believe us or help. I will look you up on FB

    • 49erBry December 8, 2012 at 2:02 am #

      Can’t remember if I added you on FB or not. N

  6. Same Boat June 30, 2013 at 1:16 pm #

    Hey Bryan!

    brother, you said it all for many, a we’re in this fight together… each day it is a new symptom or piece of the puzzle or solution to unravel. the piece that kind of makes me the nuttiest is feeling like the only one in the room who really knows just how sick i am, with wondering who i am now getting a close 2nd place! your words resonant, for sure.

    the healing story sees to be different for each of us, but i am lnow (2 years into treatment) also ooking closely at any emotional & mind/body aspects with chronic & immune issues that could help. there’s a lot of good info out there that doesn’t negate the physical component, but supports self-healing on all levels. a strong prayer life has been a lifeline, but intuitively it feels like i have to change some things/patterns to overcome this and create complete healing, along with the meds and alternative stuff and lifestyle changes. no wonder we’re tired!

    just some thoughts from the trenches. : )

    God bless you in your journey. and healing, keep your smile and laughing, makes the critters mad. ; ) And i’ve been to Vacaville from across the country, small world!

    • 49erBry July 11, 2013 at 11:42 pm #

      Thank you and all the best to you and your journey! Keep up the fight.

  7. victorian August 10, 2013 at 4:14 pm #

    Hey Bryan, I have been ill myself for about twelve years. I am just recently feeling better from late-stage Lyme after being on Abx for about a year. My babesia and parasitical labs have all been negative. I think I have bartonella. I am finding it incredibly difficult to make progress and I am wondering if I have viral infections that need anti-virals. Have you considered this? Of course, it is impossible to know all of the viruses that infect us, so I am planning to do several drug trials.

    Are you making any recent progress with your llness?

    • 49erBry August 12, 2013 at 10:27 pm #

      It can be possible you you have viral infections and need the meds. Have you did a lot of blood work to rule them out? My LLND did a whole bunch of blood work just to make sure it was lyme and not other issues causing all the problems.

      I am not making any progress so far but I can tell you I feel maybe 5-10% better on antibiotics versus being off them. Hope you find something that helps you. I suggest a lot of blood work. Good luck.

    • 49erBry August 12, 2013 at 10:27 pm #

      It can be possible you you have viral infections and need the meds. Have you did a lot of blood work to rule them out? My LLND did a whole bunch of blood work just to make sure it was lyme and not other issues causing all the problems.

      I am not making any progress so far but I can tell you I feel maybe 5-10% better on antibiotics versus being off them. Hope you find something that helps you. I suggest a lot of blood work. Good luck.

  8. Kennedy Procell August 29, 2013 at 9:55 am #

    Hello Bryan,

    as I read through your blog I felt both like an outsider, but also as if I could empathize just a little…. I am (for the most part) undiagnosed. I have tremendous amounts of joint pain. My entire body hurts. Social anxiety, panic attacks, depression… Chronic headaches also plague me, as well as ticking and stuttering on ocasion. I have mthfr c677t homozygeos (that is probably spelled so wrong…) type also. But as far as the pain and ticking goes, the doctors are calling it either rheumatic fever or saying it is in my head…. you are so strong for going through this. I am 18 and I feel so…. out of control. The pain is mostly what gets me. I can barely leave my house… how did you deal with it? And come to terms?

    • 49erBry August 30, 2013 at 12:17 am #

      Stay strong Kennedy. Don’t let doctors tell you it is in your head or just some fever. I had to fight for every diagnoses since doctors said I was fine and could work. Then one after another I found out I had thyroid issues, lupus, fibro, lyme…. etc. If it wasn’t for me being my own advocate and kept trying new doctors I would have never known. Don’t give up.

      It takes a while to come to terms with illness and not being able to leave the house. What I did was found friends with similar illnesses on instagram and talk with them. I also found new hobbies I am still able to do and learned to enjoy the small things in life. I watch a lot of TV, do art on my iPad..things like that to keep my mind busy off the pain. I also let music be my therapy.

      I’m sorry you are unable to go out and enjoy life at an age when you should be out having fun. Hopefully you have some good friends to keep you company and help you smile. Hope you have better days. I suggest finding new doctors until one knows what is wrong with you. Keep up the fight and take care. I’m here if you have any questions. just really exhausted tonight.

  9. victorian October 23, 2013 at 8:21 pm #

    Bryan, how have you been doing? I am unable to make any progress with my illness. What kind of an abx regimen are you on?

    Regards,
    Brian

    • 49erBry October 23, 2013 at 11:50 pm #

      Hi, I haven’t been doing so well. No progress just the same old stuff each day. I have been on almost all oral abx, IV abx, injections and recently oral Doxy again but my new Lyme doc took me off everything for a detox protocol for a while. What about you?

  10. victorian October 24, 2013 at 9:35 am #

    My Lyme regimen is minocycline, tindimax, cefdinir, clazithormycin, and malarone. I was on IV ceftriaxone for a while. I am also seeing an ND. I have nothing but contempt and anger toward the medical community for letting my illness go undiagnosed for ten plus years, while I was told I have ‘treatment resistant depression.’ The biggest unknown is whether I have viral issues in addition to Lyme. There really aren’t any solid viral treatments out there, so that is what I’m trying to research. Doing labs for viral issues seems to be expensive and complicated, so I am operating under the assumption that I have an enterovirus, or some other virus reactivation. Being an insomniac for ten years does not help the immune system. I will be sure to let you know if I make any discoveries.

    For detox, am taking NDF, and taking four different probiotics.

  11. Elizabeth November 8, 2013 at 9:17 pm #

    I hope that you are doing well. I also am suffering with lyme and spine issues.I had acdf on c5,6,7. Down hill from there after over a year and many many dr.s I find myself in the battle of lyme. Now showing signs it is in spinal cord…sigh. So much pain…would love to be friends .no one else even remotely understand : / .

    • Elizabeth November 8, 2013 at 9:28 pm #

      Please email me and look me up on fb. Elizabeth Tuttle from Mishawaka IN!!! ((((((Hugs))))

      • victorian December 20, 2013 at 4:57 pm #

        Hello Elizabeth & 49er, how is your Lyme treatment going?

        I am unable to get a so called ‘herx’ effect. With that said, I started abx a decade into my illness, a bit late. I am going to have new insurance next month giving me access to bicillin la injections, that will be a lot more convenient than doing IV. I am also going to be seeing a new naturopath in about February. I am not making much progress with my current ND. Got a copy of Dr. Horowitz’s new book on LD (Why Can’t I Get Better) so I am learning as much as I can from him.

  12. Roseanne January 11, 2014 at 12:55 pm #

    Hi, thanks for sharing your story. I was diagnosed in sept. 2013 after suffering for about three years. I am the classic case with getting the run around, seeing many specialists and was treated like a hypochondriac. Is their a light at the end of the tunnel? No one seems to understand what I am going through except those with Lyme. I want my old self back. I was feeling hopeful during my 3rd month of treatment but I feel horrible now as I approach 4 1/2 months of treatment. The pain is immense and debilitating. I live in Southern California where they say “Lyme never happens.” Well I am living proof that it does happen and it changes your life. Does anyone know anyone that had fully recovered from late stage 3 chronic Lyme disease?

    • 49erBry January 12, 2014 at 10:48 pm #

      My aunt has lyme for 20+ years now and it took her about 8 years on Rocephin injections but she was able to go back to work and feel like her old self. But she is only in remission of course so she has some bad days. I have had it about 30 years and treating for 3 years and no difference yet. I think it depends on the person and their case but I do know a couple people who are better. Don’t give up hope. I was told their is no lyme here also. stupid doctors

      • Victorian January 20, 2014 at 6:32 pm #

        Bryan, what do you take for sleep, and does it work. Also, how are your inflammation issues doing? Please tell me what your current regimen is.

      • 49erBry January 20, 2014 at 11:36 pm #

        For sleep I tried everything (sleep pills, psych pills, supps, drinks). I had some success with trazadone in very high doses but made me feel groggy. I like flexeril it is a muscle relaxer but it keeps me from tossing and turning all night and also helps with my spinal stenosis at the same time. I also drink a nice relaxing tea at night before bed like chamomile. My inflammation/arthritis..etc I can’t seem to control. I can’t take steroids due to the lyme and other issues. My current regimen is just 100mg of Doxy per day for now since the doctor who was going to give me my new lyme treatment recently passed away. I’m stuck in limbo right now.

      • Brian Jones January 21, 2014 at 11:44 am #

        Ok, thanks, I always like hearing about others..

        I have had some success with klonopin for sleep, and limited success with artemisia for inflammation. It seems it is extremely difficult to overcome inflammation when these diseases go undiagnosed for a long time (25 years in my case—my one known bite). I have read that one should try to spike mino/doxy doses (i.e. 200mg mino once daily). One other piece of advice: check your body temperature 3x daily with a good liquid metal thermometer 12, 3, and 6p. If you have a low body temperature it will inhibit your recovery. Mine was running around 97 to 97.5, with therapy now at 98.6. Still having great difficulty functioning but trying everything I can to pull nails out of my foot, as Dr. Horowitz would say. I am temporarily w/o naturopathic benefits and am finding most insurance MDs to be utterly worthless L

      • 49erBry January 22, 2014 at 11:35 pm #

        My temp runs around 95-97 average 96 and the nurses always think I drink something cold before I take my temp. Now having a 101 fever to me feels like when I had 104 fever. Hope you find something that works for you. I take turmeric for inflammation but I don’t notice a difference.

      • Brian Jones January 23, 2014 at 7:18 am #

        Take my advice, a temperature of 96 is Terrible. Bringing your temperature up to 98.6 or close to it will help you to some extent. There is no recovery with a temperature that low, even herbs may not help, you will need T3, sustained release. Look at the following website: http://www.wilsonssyndrome.com/

      • 49erBry January 23, 2014 at 11:45 pm #

        I was supposed to test my T3 but no PCPs will test it and my T3 results are in probate right now. Hopefully things start coming together soon.

      • 49erBry January 23, 2014 at 11:45 pm #

        Thanks for the link I will check it out

      • Brian Jones January 24, 2014 at 12:06 pm #

        One more thing—sorry your poor 49ers lost, looks like our Hawks are going to finally win this year! :->

      • 49erBry January 24, 2014 at 11:41 pm #

        Thanks yeah that game gave me a heart attack. Go Denver lol

  13. loolux3 January 25, 2014 at 8:00 am #

    Hi Bryan. I hope 2014 is a good year and you and all of us suffering from lyme can tackle it. I had it 2010 and was given a short cycle of Doxy and thought I was “cured”– it was silent for a few years with odd symptoms cropping up now and again but then I started school and that stress brought it back with a vengeance. My primary MD claims I don’t have it because all the tests are negative. I am so bitter towards the medical community–they have abandoned us lyme disease suffers. I was a competitive cyclist and can barely ride a bike a few miles now and have so little energy.

    I finally found a LLMD who believes me! She is an MD and a homeopath. I personally do not tolerate antibiotics well so we are trying the homeopathic route with perscriptions when needed. Today I am starting a 3-day prescription of Coartem followed by a homepathic tincture to clear possible co-infections. The only indicator of Lyme is my CD57 test which was really low.

    I have to say the thing that has helped me the most is changing my diet. It was not horrible but it needed a radical change. I eliminated all gluten, sugar, caffeine, meat and processed foods. Anything that would compromise my immune system. My LLMD had me watch the movie “Fat, sick and nearly dead” and although I am not fat, I am pretty sick and feel nearly dead some days.

    So I bought a juicer and have been drinking green juice meals that are 80% vegetables/20% fruit. I was worried about the sugar in the fruit so sometimes I reduce the fruit but I need some sweetness to make the drinks tolerable. I do all my meals juices on some days and other days have one cooked meal. I started jan 1 and this is the best I have felt in 6 months–which I admit, the bar is pretty low but any improvement is welcome! I did go through a herxing type detox in the beginning which was hard. There is very little info about using juicing for helping lyme disease and was wondering if you had tried it? It is definitely a lifestyle change and buying enough veggies and fruit is a little expensive but so is lyme disease so I am willing to give it a go.

    Stay strong.

  14. sweetjolene March 17, 2014 at 1:54 pm #

    Hi Bryan,
    I have been subscribing to your blog fir quite a while and lovd reading your posts. I live in the UK and also have lyme disease. Things have been very difficult for me too. I also have a blog which I talk about my chronic pain, CFS and life hopefully in an honest, funny and sometimes touching way. Please read it if you can, I’d like to try and make you smile with my tales of woe! Thinking of you.
    http://sweetjolene.wordpress.com/

    • 49erBry March 19, 2014 at 12:15 am #

      thank you, I am following your blog now. I don’t read much (haven’t read in 3-4 years thanks to lyme and fms) but I will browse through your blog. Wishing you the best

  15. Maria April 17, 2014 at 5:39 am #

    Hi Bryan,
    I came across your blog when researching the supplement Artemisinin SOD. My story begins two years ago ,July 2012, when my left leg began dragging. Chronic fatigue, joint pain and a myriad of symptoms too long to explain here. Conventional doctors at a prominent hospital in Boston have diagnosed me with Spastic Paraparesis but they haven’t got one positive test result to prove it including gene testing. Trying to explain my symptoms to them was like talking to a stone statue. They don’t listen. I was blessed to find a doctor who did listen. He found me toxic due to heavy metals, a mutation in my C677T gene, western blot positive and he explained to me that this bite happen some time ago. After reading your story and many others with late stage Lyme Disease, I feel a sense of comfort knowing that I am not crazy. It sounds to me that late stage Lyme Disease is the culprit. I am on many supplements for about two months now with the addition of Artemisinin. I used to be able to do so many things. I was a very active person. Excersize, rollerblading, riding my motorcycle,body surfing with my kids etc,have all stopped. I was also a very sharp minded person. Getting my thoughts together and even trying to type this properly are a thing of the past. My life is spent on my bed most of the day. I want to thank you for creating this blog. Stay strong and my prayers are with you.

    • 49er Bryan April 21, 2014 at 5:37 pm #

      Hi Maria, the western blot can be very inaccurate so there actaully are false positives the GPs are correct with that. As far as having chronic lyme it can be hard to diagnose since lyme can mimic so many other illnesses. You may or may not have lyme that’s the bad part is how do you know? I suggest the advanced-lab test it is 98% accurate so nobody can tell me I am not positive anymore. My western blots were either false pos or neg or int. You may also have other illnesses caused by the lyme such as CFS, FMS…etc. Do you access to a good LLMD?

  16. Maria April 22, 2014 at 1:39 pm #

    Hi Bryan, hope you are feeling better. Reading your last post and praying for you. As for my Doc. I am not sure if he is considered a LLMD but he practices conventional and integrated medicine. Do you know of a reliable website for LLMD? Unfortunately, I have been out of work since November and have to apply for SSDI ,so money is really tight right now.

    • 49er Bryan April 22, 2014 at 11:23 pm #

      Hi Maria, you can contact ( lymebarb.aol.com ) she’s with the group at lymedisease.org. I have talked to/met many of the people who work at lymedisease.org and they are nice people. She will give you a list of all the LLMD’s in your area. I went through the disability/bankruptcy thing 4 years ago it wasn’t fun. I had no income for 3 years and no spouse to help so it was rough times. You state/city will have programs to help you but they differ in each state. You can get on medicaid and maybe a local city insurance to help with meds. The LLMDs and lyme meds are all oop so it is hard but I had a little savings I blew through until I got my SSDI and Medicare. I wish you the best with everything.

      http://lymedisease.org/contact.html

    • 49er Bryan April 22, 2014 at 11:23 pm #

      sorry lymebarb@aol.com

  17. Maria April 23, 2014 at 10:58 am #

    Thanks Bryan for the info. Blessings and prayers to you.

    • 49er Bryan April 24, 2014 at 12:25 am #

      You’re welcome and back at you.

  18. madelinefresco May 16, 2014 at 8:05 pm #

    I randomly found your blog based on the dating entry you posted. I do not have Lyme’s, but I do have chronic back pain (herniated discs) – which seems so simple, yet, so not simple. I can not sit – ever. I can only stand for a bit during the day. From the outside, I look fine. I found your blog to be very helpful. I spend a lot of time at home as well, and my computer is my best friend now 😉 I think the hardest part, for me, is letting go of the past. Being an operating room nurse, tons of friends (like you, not so many anymore – each year, they dwindle), playing soccer three times a week … to feeling so isolated it drives me crazy. Everyone always says join a support group, but I actually find them so depressing! I would love any suggestions you have on groups where people are ill, but almost don’t talk about it! My idea would be we all know we are in pain, can’t move about a lot, but therefore do something else – like talk about world events, watch football together, but separately? FYI, I was sooo hoping to be better over the last few years, as a Green Bay fan, I really, really wanted to see the playoff game here in San Francisco!

    • 49er Bryan May 19, 2014 at 12:16 am #

      I’m a big Aaron Rodgers fan. He went to Cal which is the college I almost went to and local. He played with Marshawn Lynch who is another fav although he is on Seattle grrr. I was on a lot of facebook groups for different illnesses but I had a few crazy stalkers. I then went to Instagram where is where I spend the most social time when I have energy. If you search for a hashtag of your illness you can find other users who suffer. Most have “sick” accounts with all sick friends and their “normal” account where they don’t talk about their illness. I found a lot of great friend on there who I keep in touch with daily. I also found the love of my life on there. She is my ex now but we are currently trying to get back together. It is hard to finding a good group of people who are positive and uplifting that don’t talk about being ill so much. So give Insta a try. Then you can direct message people or use KIK to private chat. I wish you luck. I know exactly how you feel.

  19. Jennifer Carlson-Suarez June 13, 2015 at 8:06 am #

    Hi 49er Bryan,

    My name is Jennifer and I have been clinically diagnosed with Lymes for one week now. 26 years ago I found an engorged tick on my abdomen and was freaked out and pulled it off. I’d been in coulter vile on a ranch the whole weekend. I’ve been backpacking with my husband and 3 children for many years in the canyon of the tuollumne river and covered in ticks when we arrived at our camp. I remember on one trip finding an attached tick on my daughter as well. She has Arthriris with swelling in her knees at age 24. I have an infectious disease consult in process. I was diagnosed by dermatologist after my 4th ER visit in 3 weeks for crazy, crazy deep aching pain in my nerves of my pelvis, lumbar/sacral region, radiating down my leg, then spread to my abdomen and diaphragm. Then spread into my spine between my shoulder blades, then have the deep aching pain in my arm pits radiating down the lateral sides of my arms into my hands. It was so intense for 3.5 weeks at night mostly, that I did not get much sleep. I took 2 hour naps here.and there. I found that at Er visit #4 the ER Md and staff began treating me like I was drug seeking. I also had a large rash on my right hip outlining my pelvic bone. That is why Derm was called in. Thank god, she came to see me directly in the hospital, as the admitting doctor had already sent another Dermatologist a picture of the rash. My problem is that I have no positive Lymes test. I was started on doxycycline empiracly for 2 weeks by Derm and after one week have not had any more “attacks”. The last 3 nights I have slept. My abdomen and all of my back, and arms and legs are still electric and ache, but as long as I don’t have 40 hours of non stop crazy deep bone ache and spasms I can manage. I am an ER Nurse and have been working until May 14 when this hit. I now realize that I have been having symptoms for 13 years. I also started with the unexplained knee swelling and pain 13 years ago. I also have issues with cognition like “word search”. When writing or talking being unable to bring up a word, even though I knew deep inside what word I wanted. Also on and off blurriness, and optometrist said I have a lazy right eye. Hope I don’t get brushed off by infectious disease….BTW…49er fan for all my life..my father played pop warner at Kesar stadium. My all time favorite players, oldies…Cedric Hardman, Gene Washington! And of course..Joe, Dwight, Steve, Jerry…..and lastly, Frank Gore! GO NINERS!!

    Jennifer

    • 49er Bryan June 14, 2015 at 8:35 pm #

      There’s a great Lyme Test that is 98% accurate called the advanced lab Lyme culture. Since I’ve had that test all my doctors believe I’ve had it 32+ years now. It’s a relief. It’s about $700 and Dr Mora in Sacramento can do it for you. I’m sorry your family is also suffering but arthritis was one of my first signs at age 21 and spinal issues like DDD. I’m a die hard 49ers fan and trying to get on voluntary with the organization. I’m an artist for Vernon Davis and run a popular instagram account all about the Niners. I talk to all the players it’s so much fun. Hope you get things going and get treated correctly because it gets worse. Bedridden and in a wheelchair worse.

      • Jennifer Carlson-Suarez June 17, 2015 at 2:41 pm #

        Now that I am on doxyclicline will the test still work? Or should I wait for another relapse? My sister’s wife says she had Lymes which caused her to have seizures and then migraines. She took a mix of Chinese herbs and they say she is cured. I’m going to try that route, because as you know too well….I won’t get a diagnosis until I have a positive lab. Which I don’t. I saw Infectious disease today and he won’t DX me with Lymes, but did order 2 more weeks of doxy to keep me on it for a total of 28 days.(which is what the medical books say is indicated treatment for chronic Lymes disease). Thank god he did that or I was going to run out! I have a “special” insurance that makes me stay within their own paid doctors system(hint-hint). So I will e-mail the dermatologist the name of that test, and see if she can send he biopsy of my skin of the Rash in for that. Otherwise I will pay out of pocket for it and dr Mora visit. Thank you for the info. At this point I need a positive lab. Too bad the insurance co’s make things so hard! U can probably tell my mind is still fuzzy, as after I read this it seems kinda mixed up, but…best I can do.

  20. Ross Johnson June 6, 2016 at 4:04 am #

    Has anyone here ever tried hyperbaric oxygen tank? I am at the Internal Medicine of Northern VA clinic. I am on Nutramedix banderol, samento, Burbur, parsley, pinella and mapalo. I am also doing 1 hour 2 times a day of hyperbaric oxygen. I had 14 months of intravenous abx which only made me so very much worse I gave up on abxs. Herbals and the tank seem to be working for me. It is very important that you do not let a Herxheimer reaction go unchecked. You will never get well if you let yourself herx unchecked. The Herxheimer reaction reduces your immune system and makes it even more difficult for your body to dispose of these nasty little buggers.

    • 49er Bryan June 29, 2016 at 5:13 pm #

      I’ve never tried it. Isn’t it pretty pricy? I can’t even afford $25 LDI t the moment. Is it helping you?

      • Ross Johnson June 30, 2016 at 4:11 am #

        It costs $200/he which is pricey and most insurance will not cover it for Lyme use

  21. Deborah July 4, 2017 at 5:06 am #

    Maybe you could use this tonic LYMESHIELD http://www.herbactive.co.uk/lyme.php it does contain stevia though and ofcourse many other herbs, but some people find they can’t take stevia, early days but stevia has also been shown to kill lyme. There is also this tonic called WORMLESS http://www.herbactive.co.uk/wormless.php
    The herbalist Alan Hopking gives a lot of information on his site about lyme and on another page about co-infection, please at least go and read it. I hope this info helps. He does ship to the USA and anywhere else I believe.

    • 49er Bryan July 10, 2017 at 8:45 pm #

      Thank you, I’m allergic to stevia though. It makes my mouth numb and I gag a lot.

      • Deborah July 12, 2017 at 10:33 am #

        I wonder if you have that reaction because of the lyme?
        I find I seem to get headaches when I use it and I am talking about the organic green leaf stevia powder. It seems quite a few people do suffer with headaches from stevia leaf.
        The WORMLESS tonic has NO stevia.

  22. Deborah July 22, 2017 at 4:45 am #

    Hello, it’s me again, I have been busy doing more research and I wondered if you had heard of this and tried this. I will paste a paragraph that another person wrote and also a link to that page. Hope that it can heal you ALL, please try it it isnot that expensive, it is cheap. Here:-
    I am a detoxification specialist that coaches many people using Turpentine and the results are nothing amazing, i find almost all of my clients get rid of systemic candida within a week to a month which is just amazing and i have tried so many things over the years but i never got the results that Turpentine has gotten me and my clients! I am doing my best to spread the word on this amazing healing substance! Also it has shown me time and time again to be brilliant for removing parasites and i have even cured a woman of lyme disease using this stuff!

    That was taken from this page, there is a video on there to watch about this, please share this information.

    http://projectavalon.net/forum4/showthread.php?63907-100-Pure-Gum-Turpentine-Kerosene-Kill-deadly-Candida-leave-healthy-bacteria-alone-/page29#post_1060728

  23. Deborah July 22, 2017 at 5:15 am #

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