05.24.2016

My new diagnosis…

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I’ve always believed there has to be an underlying cause for fibromyalgia. Over the past few months, I’ve interviewed a number of researchers who posit different theories on what triggers fibromyalgia. Brain inflammation, viruses and an endocannabinoid deficiency are just a few of the reasons they’ve cited.

Since my fibro diagnosis, I’ve repeatedly said to my family and fibro friends that it feels like I’m missing something – that there’s a reason I’m not getting better even though I’ve committed myself to recovery.

I just couldn’t figure out my missing link. But yesterday, I may have finally found my answer. I was diagnosed with chronic Lyme disease.

For years, I've lived with unexplained pain, fatigue, cognitive dysfunction and other symptoms. When all of my blood test came back negative, I was diagnosed with fibromyalgia. Yesterday, I added another diagnosis: chronic Lyme disease.

When my mom was alive, she used to tell me to always get copies of my medical records. Had I heeded her advice, I would have found out that I had Lyme several months ago. When I was working with my fibromyalgia specialist, I had him test me for Lyme because I thought I might have been exposed. I had heard that a good number of people with fibromyalgia actually have undiagnosed Lyme. Lyme is misdiagnosed so often and mimics so many other conditions that it’s nicknamed the great imitator.

My general practitioner and rheumatologist have tested me for Lyme using the standard testing available in most doctors’ offices. Both times, my tests came back negative.

The standard tests are extremely unreliable. Some estimates say they pick up new Lyme exposure in only 50 percent of cases. And for those of us who were exposed to Lyme months or years ago, the chance of those tests picking up our Lyme infection is pretty much nonexistent because the bacteria suppresses the body’s ability to make antibodies.

Many in the Lyme community recommend iGenex testing. It’s more reliable than the tests offered by LabCorp, Quest Diagnostics and similar labs, but it’s also not covered by insurance, and it’s expensive ($200-$300 for the basic Lyme panel).

Last October, my former fibromyalgia specialist ordered the basic iGenex testing as part of my lab workup for his program. I had the test, and a couple of weeks later his assistant emailed me to say I’d tested negative. At that point, I figured Lyme had been ruled out, and I moved on to exploring other causes.

Fast forward to a couple of weeks ago … I had asked my specialist to send me copies of all of my labwork because I was gathering my medical records to apply for my medical marijuana license. One evening, I decided to flip through my records to see if I saw anything useful. My mom had also told me sometimes you’ll see things on your labwork that your doctors won’t mention.

As I looked at the three-page iGenex report, something didn’t look right. The overall test result was negative, but I’d tested positive for several Lyme bands, and several others were marked “indeterminate,” meaning the test had reacted but not enough to conclusively say it was positive.

My knowledge of chronic Lyme is limited, but I had written a news story about it last year, and I remembered a Lyme support group leader had told me that if you test positive for any of the bands, then you still may have chronic Lyme even if you don’t meet the U.S. Centers for Disease Control’s guidelines.

I sent my results to the support group leader I’d interviewed previously and another acquaintance whose entire family has Lyme. She sent my results to a second support group leader. All three said it looked like I had Lyme and advised me to see a Lyme literate medical doctor (known as an LLMD in the Lyme community) as soon as possible.

My appointment was yesterday, and the doctor confirmed what my Lymie friends already had told me: Based on my test results and my symptoms, I have chronic Lyme disease.

Of course, one of my first questions was, “So does this mean I don’t have fibromyalgia?” The doctor says I still have fibromyalgia, but it’s possible that Lyme is the underlying cause for my symptoms, and that once I’m treated, my symptoms may improve. Here’s hoping…

So what does this mean for FedUpwithFatigue.com? I don’t plan to change much. I will still write about fibromyalgia and ME/CFS, but I’m sure I will also be adding some information about Lyme because that will be part of my journey now.

If you compare the symptoms of Lyme and fibromyalgia, there’s great overlap. I would bet every dollar that I have in the bank that some of you reading this right now have chronic Lyme and don’t know it. So, I’m going to treat this new diagnosis as an opportunity to educate and hopefully help others. In the coming days, I’ll publish a post with more information on chronic Lyme, how it’s diagnosed, testing options and other information for those of you who would like to go through the process of ruling out chronic Lyme as an underlying cause for your symptoms. Stay tuned.

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Comments

  1. Giuliana Cassataro says:

    Hi Donna,

    I’ve been following your very informative and helpful blog and I remembered this story about your diagnosis. Well, I was diagnosed in October 2016 with fibro and I just came back from seeing an LLMD today who just informed me that I have later stage Lyme and Babesia. I was prescribed antibiotic to start with, I am also hoping that this will take care of a lot of my symptoms though he did say I might feel worse before I feel better.
    I have mixed emotions about this diagnosis. I’m course hoping this will make my fibro symptoms disappear….
    I was wondering how you are feeling and what your treatment for lyme has done for you?

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Giuliana,
      Wow, I bet you’re shocked and overwhelmed, huh? I know I was! Well, what I would say to you is this… This diagnosis is a GOOD thing! At least you know the enemy that you are fighting now. And although Lyme is a tough disease to conquer, there are people who recover and get their lives back. It’s not often that you hear about recoveries in the fibro world. So this is definitely a positive – you’re on the right path now!!!!

      I’ve been in active Lyme treatment for about 10 months now. I did about 8 months of antibiotic combos. I made some progress but not as much as I had hoped. In March, I decided to stop antibiotic therapy and switch over to herbs b/c I was concerned about the long-term consequences of taking antibiotics for such a long time. Right now, it’s too early to tell if that’s the right decision.

      Your doctor is right…You may feel worse before you feel better. Then again, you might not. My doctors said basically their Lyme patients fall into three categories when they start antibiotic treatment – they either feel much worse, they don’t feel anything or they feel better – and that it’s pretty evenly distributed among the three groups. I felt worse for a while but then felt somewhat better. I’m no where near healed at this point, but at least I think I’m moving in that direction. I wish the same for you!

      You’re welcome to email me anytime if you need to talk or exchange treatment info. I know it’s completely overwhelming. I still get overwhelmed sometimes w/ it.

      • Giuliana Cassataro says:

        Thank you Donna. Yes, you said it exactly. Overwhelmed, shocked and angry at the medical industry and how it all works. I was tested for lyme last August and of course it was negative and then again by the rheumatologist that diagnosed me with fibro and it was negative. Not to mention all the other doctors that wanted to put me on anti anxiety and antidepressant or better yet birth control as my periods were all over the place and was having night sweats, typical of Babesia, as I’ve come to learn now.
        It’s been a draining, painful and emotional journey and though it’s not over, I agree, knowing the cause and feeling like I’m on the right path with treatment is a huge relief.
        I hope we both get well altogether.
        Thank you for all you do for this community.

        • Donna Gregory/FedUpwithFatigue.com says:

          Yeah, I agree with you that the medical community has completely failed us. When I look back on all of the mystery symptoms and diagnoses that I was given over the past few years, I realize pretty much everything was tied to Lyme/co-infections. It’s like the missing piece.

  2. Hi Donna,
    I’m glad you finally got some answers. I am like you, I never believed that it was just Fibro. So I kept searching. I was just diagnosed with late stage Lyme this past March. It has been a difficult journey for me. Thank you so much for sharing your story, it helps me to read about others and their experiences. Treatment has been extremely rough as I have been sick with this for nineteen years. I’m not expecting miracles but small improvements would be nice. I was also previously diagosed with Fibro and CFS/ME. Best Wishes and thank you for continuing to share your story. Valerie

    • Donna Gregory/FedUpwithFatigue.com says:

      I know what you mean about treatment being rough. It has been a challenge for me, too. Hopefully it will be worth it. I’d love to get my life back.

  3. Kelly says:

    HI Donna! What tests do the docs run to check for lupus?

  4. Wendy Skillman says:

    I’ve always felt my fibro was related to lyme although my tests come out negative. My story is different, because my body went “haywire” a term I’ve always used to describe how I went from healthy mom of 3 teenagers to body pain so excruciating I didn’t think I wanted to live anymore. This occurred progressively after 3 courses of the Lymerix Vaccine. It was taken off the market after a year due to “lack of interest” so they say. It was supposed to prevent Lyme. Even during its testing phase they knew that some people were developing an “arthritic like condition” after the shots but it couldn’t be proven that it was a result of Lymerix. There was a class action suit against SmithKline, which I wasn’t a part of because I was barely keeping it together dealing with “Fibromyalgia” and it wasn’t something my doctor was going to tell me about. The people like me lost their case (better corporate lawyers) and we live the rest of our lives with “fibromyalgia” and the overlapping chronic lyme symptoms that are progressing. So, for the last 14 years I say I have fibromyalgia, but it is not what I know for sure. Best of luck with treatment for Lyme, I’m interested in seeing how it works out.

  5. Jacqueline Brogna says:

    Donna, congrats on following through! You’ve got a tough road ahead. I too have Lyme have for 10 years now. I was diagnosed by my primary who I’m lucky to have is also a Lyme literate doctor! HE caught the bullseye rash on my back. during a follow up of having a deer tick removed.
    I went through 4 rounds of antibiotics! Still I show signs of Lyme in testing which he does yearly. He is one of few Dr’s who believes it’s chronic because it goes dormant and can reoccur if not kept in check. It cause me to lose thyroid function completely and of course get Fibro. However I have found over the years a really good Probiotic taken daily has helped keep the Lyme dormant. I also have a chinese herbalist I go see in New York who works with my primary to keep me well. I’m able to work full time and manage my fibro with supplements and just a muscle relaxer. I pray you too will be able to get well and improve your Life!

  6. So glad for you that you took the initiative to look through your own lab results and follow-up on your own! Everything you said about Lyme is absolutely true (and also, even the Igenex test still only catches about 65% of Lyme cases), and it is SO often missed. Also thrilled to hear you are seeing a real LLMD – that’s what you need. Make sure that he or she also evaluates you for all of the other common tick infections – Lyme is rarely passed on alone from ticks and you can’t get rid of Lyme completely without treating all of the infections present. The testing for the other tick infections is even worse than that for Lyme, but your LLMD can also evaluate your symptoms, history, and physical exam. For example, night sweats are a common symptom of babesia, while burning pain in the soles of the feet and stretch-mark-like lines on the body mean bartonella.

    My son’s story is similar. He had ME/CFS first but got Lyme a few years in. We knew he had Lyme and treated it…but no one ever even mentioned the other infections. He got worse and worse for the next 3 years & we kept thinking it was “just” his ME/CFS, until we finally noticed some of those unique symptoms and took him to our LLMD. He still had Lyme and also had babesia and bartonella. He is now 7 years into treatment. It is a long, sometimes difficult path (you almost certainly will get worse for a while), but he is doing SO much better now. He is in college, living on his own, and even working part-time!

    Glad to hear you are on the right path. Please feel free to ask any questions – we have been through a lot of this already (I have ME/CFS and have had Lyme twice & gotten rid of it!) & it is very complicated.

    Sue

    Live with ME/CFS

    (Found you through the Chronic Friday link-up)

    • Donna Gregory/FedUpwithFatigue.com says:

      Thank you, Sue! I’m a fan of your blog and may very well take you up on your offer to ask questions. Lyme is just as overwhelming as fibro…so much to learn.

    • Rachel says:

      Sue I would love any advice you have so I can start fighting this! I live in Wichita, KS and need to find a LLD.

  7. I can completely relate to your feeling of knowing there is more to the story. My intuition tells me there is something else going on with me, I just don’t know what it is. But one thing I have done is contact Armin labs (in Germany) about Lyme testing + coinfection testing and I’m waiting to hear back.

    I’m glad your intuition led you to this point and though I would never wish the diagnosis on anyone, it’s a positive that you now know what you are dealing with. I wish you all the best with treatment going forward and I look forward to reading about your progress.

    • Donna Gregory/FedUpwithFatigue.com says:

      I hope you’re able to get properly tested. I think that’s a great idea to rule it out (or in). I know there are probably thousands of people w/ fibro who have undiagnosed Lyme. I’m glad I pushed for testing. It’s a blessing to know this b/c it will completely change my treatment plan and possibly help me toward a recovery.

  8. Wow Donna! On one hand I am so glad for you that you have the ‘peace of mind’ of finally having an answer. On the other, I’m so sorry actually have Lyme disease! And isn’t that typical of the medical community to get it wrong, or have a standard of ‘normal’ that completely misses the mark! I stress this to my readers (and myself) all the time: Be PROACTIVE in your healthcare treatment and diagnosis! If you think something is ‘not quite right’, follow your instinct! The worse that can happen is a doctor may get irritated or dismiss your concerns (so…how is that different than so many other times?) Way to pursue your hunch and now, this could be the information someone else takes to help with there own diagnosis! Pinned/Tweeted ~ *Thank you so much for linking up @ Chronic Friday Linkup!

    • Donna Gregory/FedUpwithFatigue.com says:

      Thank you, Kristine. I plan to write more about the connection b/tw fibro and Lyme, and hopefully my story and information will help others to get diagnosed and get the proper treatment.

  9. Hello Donna,
    Sorry to hear about your added disease but hopeful that you might feel better. I first want to say thank you soooo much for all your info and for caring enough to share. This is my first time writing. I wanted to share my story…I have been diagnosed with Fibro. over 20 years and in October of last year I was diagnosed with onset of Parkinson’s Disease…I’m 54 and wonder if anyone else has been diagnosed and how can these two diseases intertwine? I suffer from depression for years and wonder now if the Parkinson’s played a part and also PTSD. Life can be overwhelming as many of you know…I tried the PD meds but the side affects were horrible…it made me feel worse so now I don’t anything for it…I do take Gapabentin, Prozac, and Kloladapin for anxiety. Wish I find help to a minimum but it is what it is…if you or anyone else can give any feedback it would be greatly appreciated. God bless and take care!

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Juanita, have you been properly tested to rule out Lyme? There’s a definite link between Lyme and Parkinson’s disease…

  10. Eithne O Reill says:

    Dear Donna’ I was diagnosed with fibro bit on reading your story i am wondering could I have Lyme disease, but it is a long time ago I was bitten by ticks from cattle around mmankle like a bracelet went o doctor as it was infected put on antibiotics fo a week so I am wondering is it to long ago to be Lyme .

    • Donna Gregory/FedUpwithFatigue.com says:

      I was told that Lyme can be inactive in your body for many years, so it is possible that you have Lyme from being bitten many years ago. I would encourage you to get proper testing, so you can rule it out. If you have Lyme, you do not want to go untreated b/c it can worsen over time and transition into much more serious conditions. It’s been linked to MS, ALS, Alzheimer’s and others. I’ll be writing a post on proper testing and how to find a Lyme literate doctor next week. That should help you w/ some basic info to get started.

  11. Jacquie says:

    I, too, have Lyme Disease. No surprise as I’m from the Northeast where the disease is rampant. The Western Blot test is the most accurate test for Lyme. As I’ve spent most of my life in the woods in CT, VT, its not much of a surprise. What is a surprise is that my last doctor said my Lyme Disease was inactive. Not even she knew what that means and with all the doctors I have to see now, I’m not about to add another Lyme doc to my list.

  12. margie sanders says:

    so sorry to hear this Donna ,pray you will figure out what will work best for you and you will start feeling better!

  13. Pam R. says:

    Donna, So sorry to hear about the new diagnosis….one more piece of the puzzle.May you find improved health and renewed determination to continue to be an inspiration to us all. After 20+ years with Fibro/CFIDS/ME diagnosis, I too have just had a new/additional diagnosis…Lupus. Like Lyme disease, Lupus mimics many of the Fibro symptoms. In addition to the “regular” Fibro meds, I am also now taking an anti-malarial drug. There is much to learn, more to deal with. I do believe, however, that as the medical communities continue the investigation into the “hows and whys” of Fibro there will be (hopefully within my lifetime) cures found for all these types of diseases. You are wished the very best. Thank you for your posts and encouragement.

    • Donna Gregory/FedUpwithFatigue.com says:

      So sorry to hear about your diagnosis. From what I understand, it can be pretty common for people w/ fibro to also develop autoimmune conditions like lupus. My mom had fibro and lupus. I make sure to get tested every couple of years b/c I’m wary that I may get it too. Thank you for the well wishes. I wish the very same for you.

  14. sheri says:

    at first they and I (more then they) thought I had lyme! I went to another state to go to a specialist and he confirmed no lyme! Glad to hear you got a diagnosis, that is so hard these days!

  15. I am so glad you finally have some answers. Chronic Lyme is very controversial according to the CDC, so it’s not surprising that you don’t meet their criteria for Lyme. I’m happy you’re content with your medical team, including your LYme literate doctor.

  16. Kathy says:

    Hi Donna, first, thank you for all the advice! Question for you….if you are now diagnosed with chronic Lyme, how would your treatment be any different then if you have fibro? And will you get any better? Sorry, two questions. 😊
    Reason I ask is that I have had fibro for over 15 years. Also diagnosed with CFS years ago. I have often wondered if I have Lyme and have been tested several times. Negative every time. I’ve not had the extensive testing you mentioned, though (or maybe I had from my Holistical doc??). I’ve mentioned it to my GP doctor a few times and he just says its fibro and CFS. I have found ticks on myself over the years but never a rash or bullseye. So I wondering if I should push and pay to have the extensive testing done by that lab if it’s really not going to matter with my treatment or will things really change if I have had Lyme all these years, will I even have a chance to get any better?? Sorry, long winded question 😉. I just don’t want to put a ton (MORE) money out for testing and whatever they would do for treatment when things may not change or get any better since its been so many years of starting with all this. I guess I’m wondering if people with chronic Lyme recover or basically stay the same. I’ve spent thousands of dollars over the years with tests, doctors (some Holistical), medications, treatments, supplements, lotions, potions, books….you name it, and honestly, I’m still not any better. ☹️ Thank you!!

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Kathy, for Lyme, the standard treatment is antibiotics, which kill off the Lyme bacteria (and co-infection bacteria). Some Lyme literate doctors take a more holistic approach. They may use a combination of prescribed antibiotics or they might rely completely on herbal supplements, or a combination of both. My doctors will be using a combination. Like you, I had the regular tests and they came back negative. The regular tests just aren’t very accurate, especially for people who have longtime exposure. I read that only around 60% of people get the bull’s eye rash, and a good chunk of people diagnosed w/ chronic Lyme don’t even remember being bitten by a tick. I thought I may have been exposed to Lyme, so I really wanted to have the iGenex testing to rule it out or rule it in for sure. I didn’t want to spend years and years feeling like this if there was an underlying cause that could be treated. The iGenex test isn’t cheap, but for me, it was worth it b/c it completely changes my course of treatment now. Here’s the thing: I very rarely hear of people w/ fibromyalgia and ME/CFS ever fully recovering. Some people manage their symptoms really well, but very few of us get better and return to having a regular life. Chronic Lyme is a serious, serious condition BUT…some people actually get treatment and get better!!!! I can’t tell you to spend the money for the test b/c it’s your finances and it’s your health, but for me, at this moment, it was worth the investment b/c now I have hope that I might be able to get better. With fibromyalgia, I didn’t have that. I was just looking at years and years of trying to manage it, and hoping something finally helped.

  17. From everything I have read about chronic Lyme treating this is going to be as rough & at times frustrating as searching for treatments for fibro. Hopefully though as you continue treating the Lyme you will finally be able to see some results from all of the changes you have already made due to the fibro. Praying that fixing what may well have been YOUR fibro “trigger” at least brings you some additional symptom relief.

    • Donna Gregory/FedUpwithFatigue.com says:

      Yes, I expect it’s going to be a long and expensive ordeal, but I’m hopeful maybe I’ll be one of the lucky ones who get better. Thank you for your well wishes.

  18. KKathy says:

    reading your latest entry regarding Lyme Disease sent my head spinning.Not only does your life resemble mine,it sounds like both of our deceased moms had the same train of thought regarding medical records.Luckily I listened this time mom!But due to feeling like major crapola I’ve never really looked deely into my records.
    It made me recall that this whole journey started when I found an embeded tick in the back of my head.No big deal.I was raised around animals,pulling out ticks all the time.Plus I lived for years in Old Lyme Connecticut .I live across the Ct river from there still.2 weeks after i found the tick,I woke up swollen like a tick.went to ER.had labs came back neg,sent to an internist who tested me for RA.and so the story goes on…anyway,I’m going to look into the Lyme testing more closely after reading your blog today Donna…THANKS!!!!

    • Donna Gregory/FedUpwithFatigue.com says:

      So glad to hear you’re going to look into testing. It sounds like Lyme might be part of the answer for you, too. I also grew up around animals on a farm. My legs were eaten up with tick bites as a child. I pulled ticks off of me regularly through my 20s when I finally moved to the city. Never gave it a second thought.

  19. So do ypu only contact Lyme disease through a tick bite?

    • Donna Gregory/FedUpwithFatigue.com says:

      Ticks are the most common transmitters, but there’s some evidence that it can also be spread via mosquitos and fleas. There also are some in the Lyme community (my doctor included) who think it can be sexually transmitted.

  20. I’m in a similar boat with fibro and lyme, although I’m lucky my doctor didn’t cover up my test results. Lyme treatment did improve my symptoms some, though it wasn’t the cure I was looking for =) I’m both glad and sorry to see you got a diagnosis!

    • Donna Gregory/FedUpwithFatigue.com says:

      I had forgotten you have Lyme. I always think of you as a fibro blogger. Any good advice for me as a complete newbie?

  21. I have chronic Lyme myself, and am sorry that you have to undertake this new diagnosis. I have fibromyalgia but I never quite know what to do with myself because my Lyme Literate Medical Doctor and I have agreed it’s PART of the Lyme, not fibroymalgia itself. However, my doctor has never said fibromyalgia on its own does not exist. Does that make sense? Sorry, in a bit of brain fog today. Anyhow, I’m here if you need to talk about Lyme! It’s SO complex that it’s unreal; I’ve had it for roughly over 10 years and I’m still learning about it. You’ve also given wonderful advice here, especially since the tests for Lyme are rarely to be relied upon. Thank you for that.

    • Donna Gregory/FedUpwithFatigue.com says:

      Thanks, Chelsea. I’ve actually been reading your blog the past few days. I will probably take you up on your offer to talk. 🙂 There’s a lot to learn and it’s best to learn from people who have actually been through it.

  22. Marilynne Rowland says:

    Donna, I am sorry to hear you have Chronic Lyme. My daughter, who was bit in 1996 and treated with only 2 weeks of antibiotics at the time, went through several testings and doctors in different states before the late Dr. A. Martin Lerner properly tested her in 2014. I know you will, but I encourage you to do your research and get a dedicated Lyme literate doctor. Dr. Lerner’s research is still available online. She was also diagnosed with CFS/ME as a co-infection and just recently Rocky Mountain Spotted Fever. You are welcome to email me privately for more info. In comparing our symptoms after both being treated by Dr. Lerner, she does not have the Fibromyalgia as I do with CFS. We were both almost bed bound and have come a long way since Jan 2014, but are both still in treatment.

    • Donna Gregory/FedUpwithFatigue.com says:

      Yes, the doctor I saw yesterday is Lyme literate, and was recommended to me by a Lyme friend, so I feel comfortable at this point w/ my medical team. I’ll be having more testing this week for co-infections and immune system function and all sorts of fun stuff. I’m glad to hear you and your daughter have made progress. It gives me hope.

  23. Wow, sorry to hear this Donna. I believe once we know the illness we can fight it better, though. Praying as you navigate a new journey with Lyme.

    • Donna Gregory/FedUpwithFatigue.com says:

      Thanks, Kim. I think you’re absolutely right. I’m looking at this as a positive. I can make better choices and get better treatment now that I have more information. It’s a good thing.

Trackbacks

  1. […] quick review: I was diagnosed with fibromyalgia in early 2014. I found out last year that I have chronic Lyme disease and several co-infections. I was told by my doctor that these […]

  2. […] 18 months ago, I learned this lesson firsthand when I found out I have Lyme. I had been diagnosed with fibromyalgia in 2014. At the time, my […]

  3. […] answers come in unexpected ways. I won’t get into the details here – I’ve shared the entire story in a separate blog post – but last month, I was diagnosed with chronic Lyme […]

  4. […] May, I was diagnosed with chronic Lyme disease and other tick-borne coinfections. Turns out, all of these little clues that my doctors had […]

  5. […] sometimes answers come in unexpected ways. I won’t get into the details here – I’ve sharedthe entire story on my blog – but last month, I was diagnosed with chronic Lyme […]

  6. […] sometimes answers come in unexpected ways. I won’t get into the details here – I’ve sharedthe entire story on my blog – but last month, I was diagnosed with chronic Lyme […]

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