Jamison With a Pinch of Lyme

This post has nothing to do with Jameson Irish Whiskey with lime. But it has everything to do with Jamison the Irish human with Lyme disease. Sorry about the misleading photo, but try to look at it, if you will, as a visual pun (there’s probably a term for that, but I don’t know it).

I have Lyme disease. I know nothing about Lyme disease. The end.

Just joking. But seriously, I rarely, if ever, talk about Lyme disease (or my other conditions) on this blog, so I am going to try to change that.

Most of you probably don’t know this, but I was diagnosed with Lyme disease back in January. It was a shock to me. And not because it was a devastating diagnosis (although it may turn out to be). I was confused. And I mean beyond my normal foggy brain.

I know very little about Lyme disease, but I realize that it has potential ramifications to my life. For the last six months I’ve kind of been living in denial, or rather a state of, oh I don’t know, procrastination I guess?

My mentality with Lyme disease has been, well, it’s not going to kill me (although I suppose it could, maybe? But probably not), so I’m just going to get around to researching and treating it when my body allows me to, which may be never. 

Having said that, let me try to break down what I know about my case of Lyme and the disease in general. And feel free to correct me on any facts (or just offer advice) in the comment section. 

Lyme Disease Diagnosis

A few months ago I sent my blood to a lab named Igenex. The results came back with the IgM and IgG tests positive for Lyme disease and there was a very low positive IgM for Babesia. Now I would love to explain what those things mean, but I know too little about them to really do them justice. However, a good friend of mine with knowledge of Lyme and MECFS (myalgic encephalomyelitis / chronic fatigue syndrome) and many other diseases, had a lot to say about my diagnosis.

She said that because I have two positives for Borrelia and one for Babesia, I may have been bitten by a tick, which is almost unimaginable, mainly because, well, I haven’t walked outside in nearly three years. So naturally I am skeptical about the diagnosis. How could I possibly have a tick borne disease without being bitten by a tick? Or was I somehow bitten by a tick while being bedridden?

I think the latter is very unlikely, but I suppose it is possible, somehow. What is much more likely is that I was bitten a long time ago and am now dealing with the consequences. But as I’ll explain shortly, even this makes little sense.

The last, and probably only time I remember being bitten by a tick was when I was playing baseball in high school. This was at least ten years ago.

But even so I’ve heard that the tick has to stay attached for 24 hours (36 to 48 hours in some cases) for it to transmit the disease and I took off the ticks that bit me in high school within an hour.

And I’ve never seen the red circle of death (or what looks like a nipple above) on my skin, which usually shows when Lyme disease is transmitted by a tick.

So the theory of contracting Lyme disease a decade ago and the symptoms not showing up until now, or possibly six years ago when I first became sick, seems unlikely. For one thing, the timing doesn’t add up and the doctor who diagnosed me with Lyme disease said the test showed that the disease was in the acute phase, meaning that I would have had to have been bitten fairly recently. Either that or perhaps I contracted the disease in another way….

I have heard that Lyme disease can be transmitted by flies and mosquitoes, although the CDC says there is no evidence that proves this. So transmission by mosquitoes or flies could be completely false, but if it is possible, it would make my diagnosis seem more accurate.

The CDC also says there is no evidence that shows pets like cats or dogs can directly transmit Lyme disease, however, the ticks can attach themselves to the animal and then find their way to a person. I think this seems like the most plausible way that I could have contracted the disease. My family has a dog and three years ago when I was living alone I often took care of a couple cats in my neighborhood. But I still can’t get over the fact that in order to get the disease, according to the CDC, I would have had to have a tick on me for two full days without noticing it. That just seems so implausible to me, especially when you consider that only one percent of visible tick bites actually cause Lyme disease.

I know that the ticks that transmit the disease are often very small and can be undetectable, but it still seems unlikely that I would be bitten in bed. What seems more likely, however, is the possibility of a false positive test.

But again I hit a road block with this explanation; as my friend said, “There are false positives for Babesia,” but I have positive tests for Borrelia, which decreases the odds of both being false positives. In other words, the tests would been seriously flawed for both to be wrong and even if one was a false positive (Babesia or Borrelia), I would still have the other, and in turn, Lyme disease in some form.

For the sake of prospective treatments, let’s say I definitely have Babesia. It is a blood parasite. That means, for treatment, I would have to take an antiprotozoal medication, in addition to antibiotics.

Lyme Disease Treatments

So far the only treatment I have attempted for Lyme is colloidal silver, which hasn’t made me feel noticeably better. I stopped taking it a couple months ago, but I may try again at some point.

Another common method of treatment is pulsing antibiotics. My friend said that Borrelia forms cysts, which continuous antibiotics won’t treat. And for Babesia, I could take an anti-parasite drug like Ivermectin. I’ve heard this is not a risky treatment and it has been shown to kill Babesia. But if there’s one thing I’ve learned when considering treatments, it’s that even benign treatments can be risky when you’re as sensitive as me.

I have never taken antihelmintic medication, but I have taken antibiotics for MECFS and I should probably try them again to treat Lyme disease, at least at some point as a cautious trial.

I have, for instance, taken Azithromycin, which seems to be well tolerated among people with Lyme and ME/CFS.

My friend, the Lyme disease expert, says “don’t take Flagyl, under any circumstances. It damages the nervous system.” So I won’t be trying that one.

She also says, “The theory that taking a short course of antibiotics will only kill the weak bugs and leave the strong bacteria intact has no objective proof to back it up.” So if I do try antibiotics, I won’t hesitate to stop if I feel worse.

Conclusion

That’s all I know about Lyme disease. Please take this post as information I have gathered from fellow patients and websites. I have only done some fact checking. In other words, if you are as new to the Lyme world as I am, do your own research and get acquainted with the disease through patient groups and reliable websites.

Lastly, since my Lyme diagnosis, I’ve been reflecting on my association with the chronic illnesses I have. I wish I didn’t have to associate myself with any, and there have certainly been times when I have preferred denial or dissociation instead of attaching myself to a disease. But for the last year or so I have made a conscious effort to advocate for MECFS awareness, and in turn, I have had to own the disease. I have had to tell people that I have a disease that is sometimes called chronic fatigue syndrome. Now that I have Lyme disease, however, one might think I would just tell people: “I have Lyme disease,” instead of battling a siege of ignorance to legitimize chronic fatigue syndrome (MECFS), a disease that many people still think is a joke. But really, where’s the challenge in that?

The difference between society’s perception of Lyme and the perception of MECFS is that Lyme is misunderstood but given respect that many people don’t give to MECFS. And that needs to change.

I’ll tell you right now, I won’t be leaving MECFS out of the conversation; it’s too ingrained in my mind for one, but also, that would be like driving by someone dying of thirst when there’s a town full of water just on the horizon.

I know very little about Lyme disease, I do know that its mysterious nature is eerily similar to MECFS and both seem to have been on the cusp of scientific breakthroughs for decades.

Both diseases are riddled with uncertainty, a lack of government research funding, and have almost no advocacy from celebrities, even those who have the diseases. I recently read, for instance, that Alec Baldwin has Lyme disease, yet it seems like he doesn’t give much attention to advocacy. He didn’t mention it once in his memoir.

So hopefully both MECFS and Lyme disease get some high profile people to champion the causes soon. In the meantime there are several organizations working to do just that.

There is an organization called the Global Lyme Alliance that is doing great work with Lyme disease. On August 24th the GLA is hosting its “SubLyme Soirée” in Chicago. The event will feature some of the top chefs in the city and there will be an auction with art and vacation getaways. If you or anyone you know is interested, I think tickets are around $100 and the proceeds go directly to the GLA, whose efforts to raise awareness for Lyme Disease have been vital.

Thanks for reading my blog! Please subscribe.

Also, thank you to my lovely friend in San Francisco who sent me the care package with kombucha tea! For privacy, I won’t say your name, but please send me your address (I lost it) so I can thank you.

48 thoughts on “Jamison With a Pinch of Lyme

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  1. Jamison — did you get my earlier reply? I don’t see it, so I’m guessing not. I was wondering if I could email you rather than go back and forth here. Hope you’re hanging in there! 🙂

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  2. My doctor said almost everyone shows up positive on Igenex and if your Western Blot is normal I wouldn’t be so quick to jump on the lyme bandwagon. I think chronic lyme is really ME/CFS and people dont seem to improve with longterm antibiotics.

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  3. Wow Jamison, we have a lot in common. ME/CFS with possible lyme. I don’t know what to believe either. I had wierd health issues before the abrupt mecfs onset and some hhv3-4 titers. Now mostly disabled. Went to a llmd all normal WB tests neg but igenex igm positive. Theres a name for IGM IGG switching back in forth in lyme over time, its called seroconversion. I think we either got lyme as children and our immune systems slowly went out of wack or our immune system is going hay wire for other reasons and cross reacting with any antibody we test for. Anyway im seeing both a llmd and an me dr and need to figure out what treatment to try. Of note before i got ME i felt my best on antibiotics. One day this whole me/cfs vs chronic lyme will be figured out via proper reseach. Until then its dizzying to hear some get better on avs, others abx and others on drugs like rtxn , and others diet or some pacing. MECFS is a mess. Thats the one true fact.

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  4. Hey Jamison, thanks for you reply. I was looking on the other page, didn’t think about looking here until today. Not sure if you can see my email address, but thought perhaps it might be better if we ‘talked’ that way, instead of posting suggestions here. Let me know what you think, and if you can see my address please email me.

    I’m sick too so I can’t promise an instant reply, but will get back to you asap.

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  5. I tested positive on Igenex in 2013 (just a few bands… barely positive, and not CDC positive, and no other tests showed anything). I saw various Lyme doctors and they assumed I had Lyme and I did various treatments for years but only got worse. Lots, lots worse. Mold was mentioned, as it causes similar symptoms, but the doctors I saw didn’t get deep enough into it. Once I started treating with Dr Ackerley my life started to change. I recently did DNA Connexions testing and am awaiting the results, we still don’t know if Lyme is truly and issue for me or not.

    My story: https://www.healthrising.org/blog/2017/04/25/death-rider-a-mold-illness-story-shoemaker/

    Also, this is a good new webinar with Dr Patel in CA who knows mold and lyme (etc) well. https://www.youtube.com/watch?v=RKyES4VqmZg

    Liked by 1 person

  6. Interesting post! Sorry to hear about your Lyme disease diagnosis. I too have Lyme disease, was diagnosed a year ago and am about 4 months into treatment. I did A LOT of research before taking the plunge.
    I don’t remember a tick bite ever. But I have three positive borrelia antibody tests and symptoms that match Lyme disease. My sense from the patient community is that lots of people don’t remember a bite. So either, ticks are sneaky little buggars and really can bite you, attach then fall off a day later without you knowing, or it’s transmitted another way. I’ve seen pictures of nymph ticks that are the size of a poppy seed, so I do think it’s plausible to not notice one. And the rash, despite popular belief, is only reported by a minority of patients.

    Antibiotics may well make you feel worse before you feel better. My feeling would be, that s a sign that you need them and that they are working. A good Lyme practitioner will work with you slowly to build up strength and immune support before going in with the hard guns.
    There is a Facebook group called Lyme disease Uk, I’d highly recommend it for support and information if you haven’t joined already.
    Wishing you love and luck
    Katie

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  7. Sorry that you have Lyme disease, but I’m glad you’re getting some answers. I’ve had a form of autoimmune encephalitis called PANS for years, but I was only diagnosed with Lyme this past December. I also still feel like I’m in denial. I try to forget that I have this terrible infection raging through my body, but a lot of days, the symptoms make it impossible to do so.

    My best piece of advice… Detox! If you’re treating with any kind of antimicrobials (pharmaceutical or natural), it’s so important, because otherwise, you can have Herx reactions that are just as bad as the disease itself. Alka-Seltzer Gold, lemon water, Burbur-Pinella drops, and Epsom Salt Baths have been the most helpful for me personally. This site has some great info on detoxing: http://www.tiredoflyme.com/detox-methods.html

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  8. I’d be very hesitant to take antibiotics unless you’re absolutely positive there’s lyme. All the recent me/cfs microbiome research has been very convincing and antibiotics could do a lot of damage. Then again, they told Avril Lavigne she had me/cfs and she went on antibiotics and got 80 percent of the way better. She’s very public about it. Also, Galaxy labs has an impressive bartonella test.

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      1. Yeah I did the 3 day draw in a lab before I was bedbound. Mine was totally negative, but I do know someone who thought they had me/cfs for a long time only for their bartonella to come back completely positive. Can you find someone to come draw it for you 3 days in a row? Could be worth it. Separately, there is apparently a new lyme urine test based on new technology that claims to be extremely accurate. Haven’t really looked into that though, just heard about it recently.

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  9. HI Jamison…I suggest you follow or browse Sue Jackson’s blog…she has CFS/ME and also Lyme’s along with 2 of her children. She is one of the best at decoding medical info and what has and hasn’t worked etc..and her blog is easy to search for specific info – also…I just decided to start (my idea no research just gut no pun intended) nasal oxygen just 15 minutes a day…and have found it very helpful. Thinking of you and this other hurdle…
    http://livewithcfs.blogspot.com/ – This is Sue’s blog.

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    1. Ugh doctors … hmm Jamison let me brain storm it’s so insane how even when a doctor doesn’t know they will say no … I don’t where it constantly I started a 5 minutes of a 2L flow rate for 5 minutes a day for a week and made sure I had no ill effects or caused a die off reaction … now I do 15 minutes – for heavens sakes there are oxygen “bars” …attempt your doctor again or PM me and I will hint around …

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  10. Thanks so much for this post Jamison. I didn’t know you were diagnosed with Lyme. Wow. A game-changer? A year ago or so I sent your mom a link to a show I heard on NPR about a woman with Lyme who ended up treating it successfully with bee venom. The story was powerful. Here’s the link: http://snapjudgment.org/venom. I love you.

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  11. Hi Jamison, I’m so sorry you have Lyme in addition to everything you already have to deal with.
    I am in a similar position, I have had ME for 30 years & in March I tested positive for Lyme via Armin labs in Germany & just wanted to share my thoughts on it with you.
    I have no idea when I was bitten, there’s no clear delineation between Lyme & ME for me personally but feeling is that if my immune system had been strong I wouldn’t have Lyme, I’m seeing it as opportunist & 2 Drs I’ve spoken to haven’t disagreed with that.
    I’ve been stalling on treatment for Lyme as well, but, personally I feel less confident that antibiotics are the best treatment so, I’m going ahead with Stephen Buhner’s protocol, which consists of herbs & supplements. He’s very experienced & his book & website provide all the information needed for treatment. I do hope that whatever course of treatment you follow it’s a great success for you & you really benefit from it.
    Take care
    Katy

    Liked by 1 person

    1. Hi Katy! I think avoiding antibiotics is the smart thing to do, especially if you’re as bad as me. That’s interesting what the doctors thought about your case. I’m sure the immune system plays a role, I just wonder how it all comes together. Thanks for reading!

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      1. I agree, it may be worth trying herbs first, in very small doses initially.
        Both the Drs I spoke to are very knowledgeable about ME – one is a researcher here in the UK – & support me treating the Lyme with Buhner’s herbal protocol. There was some mention of Lyme at the Open Medicine’s ME/CFS symposium on Saturday, which is all online now. It would be great to know how it all comes together, if I find out more I’m happy to share it with you if you’d like me to.
        Really good luck with it all.

        Liked by 2 people

  12. I’m okay sitting at my computer for a few hours a day. I feel ‘normal’ – until I compare myself to ANYONE ELSE. Or the hours are up and I’m in a fugue state.

    Supposedly I’ve had tests for Lyme that were negative, and I have spent time – rarely – weeding a bit just for the normalcy of it.

    But this is the unrelenting, chronic exhaustion that is a complete killer for any normal life.

    Sorry you have other stuff to deal with on top of it. You’d think by now, since they have the cause and the disease vector, they’d have a standard Lyme disease treatment that actually and always worked, wouldn’t you?

    Liked by 1 person

    1. Lyme should be diagnosed by symptoms not byte test. The test has a 50% Accra Cy rate (igenex is better). Have you found a lyme doctor? I went for years undiagnosed. Also, unrelenting fatigue is a trademark symptom of Lyme. I hope you can get some answers soon!

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        1. I’m in Texas so I’m not sure. But you can go on the ILADS website and request a list of doctors who specialize in tick borne diseases. You want one of these docs if possible and not an infectious disease doctor. Also, your state has a tick organization I just can’t think of the name now and you can probably contact them as well for a list of possibilities. If i can remember the name, I’ll send it! Facebook has been helpful. I joined a Texas Lyme group. I found a doctor this way too.

          Liked by 1 person

  13. Hi Jamison,
    I have been reading all your post from afar but couldn’t stay quiet any longer. I was diagnosed with Lyme this year and to say it was pretty shocking to me. I have two coinfections, Babesia and Bartonella. It all states about 3 years ago when I noticed that after working out I would be so fatigued that I couldn’t really move. I went from doctor to doctor and finally landed at the California Canter for Functional Medicine. I was also recently tested for mold, and that came back extremely high in my body. I found out a week later there was the super toxic black mold in my house and we literally left everything and walked away from it. Hardest this I have ever had to do. We lost mostly everything. Anyway I could go on for days about this new life I have had to accept. I know you are so very familiar with the denial and why me. But I am thankful that most days I can still get out of bed and feel “normal”.

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  14. I am new to my diagnosis of ME/CFS/FM. In fact as a paramedic and heard my own patients with those complaints I would think ok what are your real problems. When I began with my symptoms I was certain I had Lyme. it had to be. People understand it. You can test for it. Treat it. Get better from it. Move on from it. Keep working. Keep living. Get out of this room… tests are always negative. This paramedic couldnt fix herself. -nikki

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    1. I was diagnosed with ME CFS at first as we ll. But the underlying culprit is Lyme. The testing is 50% accurate. 5A doctor should diagnose lyme based on symptoms not meet by testing. I only speak from experience. It took 4 years and 8 doctors for me to finally get the correct diagnosis and treatment. BTW Lyme can become chronic and cause all kinds of havoc. I’m hear to tell the tale. Hope you can get some answers!

      Liked by 1 person

      1. Hey Jamison,

        I just wanted to let you know I left a comment on an older post of yours — on “The Day I Killed Someone” article.

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        1. Hey Kelly, thanks for your input. I definitely think it’s possible that there’s a link. That study is interesting. I think I read part of it before but I’m gonna look through it more. I would love your thoughts on treatments as well. Thanks for reading!

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