Hello All (or maybe nobody if this goes unread)I was diagnosed roughly 8 months ago with Lyme and Bartonella. As a 28 year old woman in a Doctoral program the thought of having both Lyme and a co-infection was overwhelming, but relieving in a way, in that finally, after countless doctors, raised eyebrows, and mis- or no-diagnoses, I finally had a modicum of hope that with a diagnosis I would become my old self again. I knew nothing of the treatment of Lyme, so I was unaware of the long-term treatment, relapses, and consequences of medications, amongst other problems.
I can honestly say I was hopeful for the first month or so. I knew I was “herxing” (an increase in symptomatology that occurs as the infected cells die off), but then I appeared to flatline. It appeared as though there was little progress, until I was placed on Rifampin for the Bartonella and had a terrible reaction. I became someone I didn’t recognize. I could cry for hours on end for no reason at all, scream all day at family members for the most minute of issues, and knew I was completely out of control of my emotions.
I was lucky enough to, through a family friend, find a psychologist that also has Lyme, and a psychiatric nurse specialist that she works with. They, particularly my psychologist, I think saved my life. I vividly remember the first appointment where she commented about hope. My eyes teared up and I remember saying “There is no hope for me. No one can help me.”
While I no longer feel so hopeless, it feels like my struggles are insurmountable. I have only one surviving parent, that I live with (not by choice), and a day cannot go by without an argument. However, before the diagnoses we never had a particularly good relationship to begin with. I looked at him as a sick and sad mad, with a flat affect, possibly no emotions, and someone who had failed to protect me time and time again.
I’m still currently in the same state, except I had extreme cognitive difficulties, and the complications associated with my infections have wreaked havoc upon the relationship with my one and only source of support: my long-term boyfriend.
So, as I lay here, I wonder if this is just another worthless venture. Another attempt at curing me, the incurable, both emotionally and physically. I suppose I am just reaching out for support, but don’t anticipate any.
I leave you with a summation of my current state of mind, wrote more eloquently than I have the capabilities:
“No, I told you. You only cry for help if you believe there is hope to cry for.”-
Wentworth Miller
journey through Lyme said:
Oh sweetie, my heart goes out to you . This is such a wicked disease. It can consume you and your whole life like a blackhole. And when you feel yourself being sucked down into that vortex, it’s hard to find anything to hold onto. So many medical people turn their backs in arrogance.
When you are at your very lowest and weakest is when you have to fight the hardest, and it takes nerves and strength of steel. Worst of all, is the way Lyme patients are negated . We are made to feel as if we are complaining about symptoms that are elusive & how date we ask for medical support ? I get furious at the attitudes of the medical world.
Depression and sadness comes with this illness as well and it’s only made worse by the attitudes of many doctors.
You are so much more than Lyme disease , my dear. Know that there are doctors and healers out there that do make a difference in our lives. I hope you have found some of them.
I live near Allentown PA and we have a few really great practitioners here. I don’t know where you live but you almost have to go underground to find them. Sometimes a health food store that you like a lot or the Lyme Association in your area may give you references. But don’t give up.
I hope that this day is better for you. It’s a beautiful sunny day here where we live and I’m going to get out of this house and walk away from Lyme today as much as I can. I gave to focus in other things to get through this but it is so consuming – it is the sir we breathe & each cell waists treatment , special diet , etc .
Look up Chlorine Dioxide treatment – people have had good success with it . Cheap & non harmful . My doc had Lyme – 3rd time this year, and almost died, it was one of her last resorts, and she is a very professional doctor who teaches other doctors. And she tried this and it worked for her. So I might try it soon.
Know I care dear heart . Be gentle with yourself & try any meditation or yoga or practice that calms your spirit & body . My thoughts & caring are with you !
Hugs ! Ginny
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lymegirl6500 said:
Thanks Ginny! I am always looking for new remedies/products so I welcome any & all advice. I’m going to look into it, as well, but in the meantime if you try it please let me know how it worked out for you. I’d love to know. Thank you for your kind words β€
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journey through Lyme said:
I will let you know- I’ve got family visiting & will try next week . After they leave . Stay positive if you can – do not let this win π we are stronger than Lyme .
Xoxo ππΈπ·πΉπ»πΌπ»πππ
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Lindsey Koz said:
This resonates with me a lot. Especially about the parents and boyfriend. Sometimes the strain on relationships and lack of support is the hardest part of this disease. Which is why the blog world can be invaluable; it reminds us that we’re not alone π I look forward to reading more of your posts!
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lymegirl6500 said:
Thanks for your support Lindsey π You’re right, I think the supportive base you surround yourself with can be the difference between relapse and remission. I’ve come to the realization that those around me cannot give me the support I need, so I need to take it upon myself to find it elsewhere. I’m hoping to find more compassionate others, like yourself, to connect with on some human-level. So many don’t understand this illness, so I love interacting with people who intrinsically “get” where I’m coming from. All the best β€
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Brian said:
I’m in my 4th week of treatment for Lyme and blogging about it too. There are people that care. I just followed your blog in wotrdpress and look forward to reading more (and will be reading your previous posts). Sometimes it’s good just to know there are others going through the same things. Hang in there.
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