Still not sure - do I really even have Lyme? Should I tell people?

Hi All,

After many years of illness, several months ago I was diagnosed with Lyme by a ND with a ton of lyme training under the ILADS protocols here in AB. This diagnosis is mainly clinical, as my results from Igenex technically read "negative" for lyme. She said that I am positive due to my long standing symptoms which fit the profile, as well as bc I have certain "markers" in my test that indicate infection, as well as a + and a ++ in a few places (if that makes sense). I also had a positive bart result.

Since then, it has been a struggle to establish whether or not I really have Lyme. I definitely feel like the symptoms fit 100%, and when I started a herbal protocol and ozone treatments with the ND I had major "herxing" happening, so that seems to make sense as well. However, my partner doesn't believe it is Lyme and keeps reminding me that there's a possibility it is something else, and not to get "too invested" in this whole lyme thing, to treat my symptoms instead of thinking of what is making me sick, if that makes any sense.

At this point I am just frustrated, I don't know what to tell people when they ask me what is going on because on one hand I feel like "yes, I have this, I know what I need to fight now, I can be excited about healing and tell people that this is for sure what I have and what I'm dealing with", but every time I go to answer I find myself not knowing what to say and almost not wanting to even tell people what's really going on. I feel like if I tell people I have Lyme, it's somehow a "lie", because I don't have the paper-positive diagnosis, but I also do in a way really feel like this is what I have and if that's the case I want to able to talk to people about it.

This is all coming up bc I am closing my business (due to illness) and I am not sure whether to let people know that it is 'because I am sick', or that it is 'because I am sick with Lyme' or just to leave out details altogether. I also have lots of friends and family who've been wondering where I have been and I'd like to put out some kind of an announcement about being sick, but again there come the worries: do I put an announcement about having lyme and really dive into this whole thing, or do I wait until we have the positive bloodwork diagnosis?

Who has the most medical training?

"She said that I am positive"

You can always go for another opinion but do you want her to treat you or someone else?

As for your partner wanting to treat the symptoms -- If his car had a flat tire because of a nail in it would he just continue to treat the symptom and refill that tire with air every day? Or would he find the reason for the flat being the nail and remove that nail and patch the tire so it would hold air everyday?

I like to get to the root of the problem and treat that.

You will have to say to people whatever you feel comfortable saying. It is your life and you owe no one answers for what you do, you know that. So this is a personal thing and you need to mull it over before you decide.

Hi Alberta Lyme Gal,
Welcome! I'm so glad you found us.

As to whether or not you say anything about having Lyme, that's up to you and how you think it will be received and if you wish to answer questions about it. I assume you will get questions anyway from family and friends that are concerned, and that may be enough.

As to your situation with your partner, what you have described (the testing and the response to treatment) is exactly how many people find out they have Lyme - so at this point, you seem to be on the right track to improving your health. Congratulations.

The testing is often wrong - there are many false negatives (sero-negative Lyme) and there are many articles that have been written about it, showing that the Lyme bacteria (Borrelia) can suppress the immune function, and change it's outer surface proteins many times in order to avoid being detected by the immune system - or the tests, since they rely on the immune system recognizing the foreign bacteria and creating antibodies. Not to mention that the tests can miss the majority of those that actually have these infections due to these things.

You will always have people that doubt your diagnosis, even if you have a fully CDC positive blood test. That's just the way it is right now. So you should decide if you wish to divulge the information based on how the people that will be asking questions would accept your words as truth (or not). I have a fully CDC positive blood test for Lyme and Rocky Mountain Spotted Fever and people still (8 years later) won't believe that's what happened, but I don't let it slow me down or worry me.

Hi: I can really relate to you, Alberta girl. I lived in Alberta most of my life and now i live i BC. I am now diagnosed with lyme for 3 years and i am fighting the battle of my life, together with wife who is also with lyme. For both wife and me, our lyme started with our respective moms who did not know that they passed on this scourge of a disease to their offspring. On wife's side, lye took its toll on the extended family by going into the mind and the brain. Suicides, mental illness with confinement to assylums, addictions, dropping out, etc. On my side, my mom passed away from alzheimer after showing symptoms of what i today understand as lyme. Her mom, my grandma, had that similar history. So my battle is such that i at all costs want to avoid Mr. Alzheimer touching my brain. In the meantime, my lyme has almost made me a cripple with really bad initial herx reactions in my right knee and right elbow. On these 2 fronts, i am finally seeing somewhat improvement with ozone therapy combined with stem cell therapy.

I can relate to the Alberta mindset disregarding lyme. On our first visit to BC when we were just exploring to move here, wife and i went into the BC forest to examine a property to maybe purchase. On the drive back to Alberta, i felt some tickling on my leg. I pulled up my pantleg and i saw this bug biting down on me. I managed to pull it off and it was squirming. Wife emptied a pill bottle she had and we put this bug into the bottle. Once in Edmonton, I went to my local mediclinic with bug in my hand and a big bull's eye rash on my leg. The young doctor told me that there was no lyme in BC or Alberta (2005). He took the bug and i told him to run tests on this bug. Doc said that bull's eye rashes are common and if i have one, it does not mean i have lyme or anything else. He was so adamant that i did not persue it any further.

I now have a friend in Alberta who i think has lyme. This person is a medical doctor and as such, he is a neurosurgeon. His symptoms are so typical of lyme that i am sure he has it and yet there is this denial within him that it must be something else. It must be maybe fibromialga, maybe this, maybe that, but no, not with any urging to date, has this neurosurgeon gone to see a lyme literate person to help. This friend is now so hard up that he is unable to be at a hospital any more doing his neurosurgery. He is sick in bed every day. All parts of the body ache. I just listen in horror as i visit him and i try to give moral support, and yet this genuinely very intelligent person cannot bring himself to go get help. It is so sad. Conventional medicine seem to just ease problems but i see now addictions building up, and i fear for his life now as things keep getting worse. I am so sad to see this day in day out.

In my current life here in BC, i am now semi-retired from my regular profession and wife and I run a small motel in a resort community. We get all kinds of people as guests in our motel / campground. We do not hide our lyme condition. We speak about it to whoever wants to listen. For the last 2.5 years my walk has degenerated to a bad limp around town and what am I to tell them what the cause of my limp is. You are right, i blame that little spirochette colony that has invaded my knee and my elbow. Wife and I have become lyme sufferers advocates. When we see someone with possible symptoms, we start conversations with guests here and this usually brings us way closer to our guests for we are see as caring persons. This friendliness is also good for business. Wife recently started a petition to get the Canadian Blood system start testing for the lyme bug and now that petition has close to 500 names on it.
Me, I just talk my lyme story and I share the little knowledge i have and i know i am making a difference. I took the liberty of printing out your story and passed it on to wife who does not frequent this site and wife told me, you talk with this Alberta girl because she is obviously in a bad state and she needs to be heard so here i am. Feel free to contact me here and i can respond personally. xfmlg

Hi Alberta Girl,

I totally relate to your post, too. Back in 1998, I had the worse hip, knee, and neck pains and could hardly get out of bed every morning because of severe joint and body aches. I was only 40 years old at the time and I just pushed through thinking it would go away. It finally did after a couple of years but I felt like I was 80 years old at the time. I vacationed in a high deer and tick infested area on Eastern Long Island for many summers since '81 remembering pulling ticks off my dog as a nightly ritual. A friend showed my husband and I how to kill them with our fingernails! Ugh, when I think of the secretions that may have been infected. Not the smartest thing to do.

One afternoon I was taking a rest before having to pick up my small kids at school and I just collapsed on the floor forcing me to see a doctor... again for the umpteenth time. I had complained about fatigue, swollen glands, sore throat, H/A, flu-ish feeling, sweats, insomnia, nervousness, reading issues, cognitive issues, balance and feeling very uncoordinated. A lots of my joint pain had gone away. At that time I was diagnosed with Hashimoto's Thyroiditis and active Mono. I went to infectious disease doctors but none ever said anything about Lyme. No answers. Then I started with not sleeping night after night got severe anxiety, then got depressed and ended up at psychiatrist, therapist one after the other through remissions and exacerbation over the years. I've had years of good health in between times of relapse. Now symptoms are different. Of course stress plays a huge part. I'm sure I passed it on to my kids especially an adult son now with many issues. I haven't even been able to address that yet. He had a bullesye two months ago behind his knee and has no health insurance. Went to a clinic and got two weeks of Doxycycline. My daughter also had Hashimotos's at 14 which is autoimmune thyroid issues. But who wouldn't be stressed when you watch your life changing not for the better and those around you are moving forward with the mainstream not in out favor.

For the last fifteen years I've found a way to work from my home, but in Feb, I got a relapse and couldn't work. I put out an email, saying that I am doing some self care and taking a break because of "lyme related issues". I will email when I back. That simple. Nobody said anything and actually got well wishes. I'm seeing a few climates for the last months. And said I am feeling better but still struggle on some days.

I am very fortunate that I have a LLMD for the last few years who is very understanding and confirms both clinically and with Igenex and other lab markers that I do have Lyme BB (first pos was in '97) and have had almost all the co-infections at one time or another. Plus now the worst is FATIGUE with and active EBV that doesn't want to seem to go away.
It's been quite a windy and arduous road. Thank goodness my husband is very supportive but does at times say I don't want to do anything. Mostly because I have found I have to conserve my energy to do the most important things to me.

Being honest, my point to this long story is that I STILL have doubt because I believe I have been inundated with the stigma of seeing therapists and having been on antidepressants and anti- anxiety meds at one time or another. Especially in late stage/chronic Lyme where the brain gets infected/inflammed. I watch my hands tremor at times, or can't remember the simplest things, or can't make conversation because I don't have the correct words, or they come out wrong thinking, "will everybody notice" or feel overwhelming worry/anxiety over little things or off balance knocking things over all the time. Also, at this point most of my body pain has subsided except for leg pain and occasional flare ups with hips, which contributes to my disbelief because most have joint pain.

This can be a very lonely illness with many opinionated comments by others. Those of us who experience it day in and day out can relate to all the symptoms, and can say, "yes, that's me, I have that too, so it is real, but why doesn't the rest of the world recognize it or believe it." In fact, I have actually had people glaze over when I say I have Lyme and co-infections that effect my immune system. I too try to educate and do believe one day this will be addressed.

Th funny thing is from the outside they see I am gluten free, diary free, try to stay away from sugar, take loads of supplements, use natural products, etc, etc. So I get folks saying with all you do, you should be the picture of health!

For me, it's a balancing act between accepting it and trying to not to over identify with it. That I am a person first experiencing Lyme. That no matter what I do I have to treat the symptoms and that I am different from others since not everybody experiences the symptoms in the same way, or not at all. You don't really have to tell all the details about the Lyme you are experiencing with anybody you don't want to tell. Trust yourself to know who will be understanding when they say where have you been? I said it in two sentences and that is all and used an email to create some boundary. Life is really all about you. When I can give myself some love and compassion about all this and try to see some goodness in everything and everyone it lightens me up to believe this is all Ok, otherwise I go into monkey mind with it an get negative. Rest when you need to rest, go out when you can.

Thanks for your post, it helped me and I value what you are going through. Thanks for letting me share, too.

PeteZa,
I believe Monkey Mind is a term Buddhist use when they describe our mind that runs all over the place. Of course the mind is suppose to think. That is it's job. They say staying in the moment helps it and of course meditating. It's not my term. I'm sure they would love you to use it!

This is such a multi system illness that it doesn't fit into a disease pattern. But if we really look, it does. For me, that is why communicating to each other is so helpful. Sometimes I don't even realize what a symptom is. My brain is so foggy right now that is it really scary. I get anxious over that. Then anxious about being anxious!

emotional and Traveler... So curious to hear more about your EBV...

Sorry if this is a tangent for this thread! I can start a new one.

How were you diagnosed and how did you treat?

My doctor thinks I have it because I seem to be making a very high amount of EBV antibodies. I just finished a round of EBV remedy, a homeopathic treatment by DesBio. I felt sick throughout, but I feel sick anyway, so it's very hard to tell if it was due to the treatment working.

emotional, I really resonated with your story.

Hi All, Sorry for the late reply post!
Thank you for the amount of support and responses, all I can really say is "wow"... at least I don't feel crazy or like I'm the only one going through this process now.

I will post my igenex results below, any feedback would be greatly appreciated!!

Girlie, you mentioned that you would not test again, especially since my Bartonella is positive. I had heard about a lab in Germany that tests your CD57 and a few other specific things on coinfections that igenex doesnt test for, have you heard of this and do you think it would be worth it to pursue?

XFMLG thank you so much for sharing your story! I just sent you a private message :)

Emotions, I could relate to sooo much of what you said, and when I read this....

"Being honest, my point to this long story is that I STILL have doubt because I believe I have been inundated with the stigma of seeing therapists and having been on antidepressants and anti- anxiety meds at one time or another. Especially in late stage/chronic Lyme where the brain gets infected/inflammed. I watch my hands tremor at times, or can't remember the simplest things, or can't make conversation because I don't have the correct words, or they come out wrong thinking, "will everybody notice" or feel overwhelming worry/anxiety over little things or off balance knocking things over all the time. Also, at this point most of my body pain has subsided except for leg pain and occasional flare ups with hips, which contributes to my disbelief because most have joint pain."

Jaw dropped, chills up and down my arms, I am reading the exact thoughts and fears I have had. This thing is definitely in my brain, to the point where I don't even feel like I'm in the drivers seat sometimes, and that "will people notice" thing? OMG alllllll the time.

I also love what you said about finding balance between not over identifying and accepting - that totally makes sense to me. I definitely struggle with finding the balance at this point. And ohh monkey mind I'm glad I'm not the only one haha. What a great phrase for it haha!

I think the main problem with all of this is that deep down I know it's Lyme. And unfortunately, my partner and some family members are not willing to look at it as a possibility. And maybe I'm clinging on to that slight possibility that it's not lyme because it would be "easier" not to conflict with all of the people who are going to continue to tell me that's not my problem. But I also know that this is my life and my fight and I need to treat these issues no matter what anyone says.

Are there any resources that any of you have found helpful in sharing with disbelievers or unsupportive family members that would be helpful? I watched Under Our Skin Part One with my boyfriend and it had the opposite effect I had hoped... while I sat there the entire time relating, and crying, and with my jaw dropped because of all the similarities to my story, he became ever more convinced that I don't have Lyme and said the documentary was very conspiracy-y. Then looked up the cdc side of things and thinks that inf disease docs are more knowl. and educ. than say naturopaths and "if they say that's not what you have that's not what you have, you aren't a dr, listen to the "real" drs", etc. (frustrating!!!)

Okay here are the IGX results:

(first page)
18 kDa, 23-25 kDa, 28 kDa, 30 kDa, 34 kDa, 45 kDa, 58 kDa, and 66 kDa all negative.
31 kDa IND
39 kDa IND
41 kDa +
83-93 kDa +

(second page)
18, 23-25, 28, 30, 31, 34, 45, 58, 66, 83-93 all negative
39 kDa IND
41 kDa ++

(Bartonella test)
B. henselae IgM <20
B. henselae IgG 160
"IgG > or = to 160 indicates active infection"

My personal opinion. If it's Lyme or not it doesn't matter. You are sick and that's it. You know it, and if they want to have a name for it tell them to do their own research and solve the misery. It's so sad that on top of being sick you still have to please people around you. Care only about your health everything else can wait.....