Day 131: Hopeless

Art from my.opera.com

I'm so frustrated right now; all I can do is cry.  After Eight months of being sick, seven months of not working, more than 20 plus MD/OB/ACUPUNCTURE/LLMD appointments, I still do not have a diagnosis.  I feel perpetually without hope.

Today, my labs came back negative for Lyme Disease from Igenex--the best Lyme lab in the country.  While this sounds like a good thing, Lyme tests detect antibodies....not the actual disease. Often the sickest people--those of us without immunity-- don't make them.  $600 later ($400 for the Lyme test and $200 for today's appointment), I am right where I was a month ago: battling multiple chronic infections, dealing with multiple symptoms...maybe caused by Lyme...maybe not.

That's the thing that sucks about Lyme. It's not like you can dip a strip into some pee and if you have it, it turns blue.  Lyme eats away at you, opens you up for other things, breaks your spirit, and evades detection; it is a clinical diagnosis. 

For now, fearing I do not have enough antibodies to test positive anyway--I am positive on band 41, inconclusive on band 39 (used to say positive 41 and 23)--we have chosen to NOT to test for ticked related co-infections (Babesiosis, Ehrlichia, Bartonella).  Instead, Doxycycline has been added to my daily routine.  If it causes a Herx reaction (ie: worsening of symptoms) it is a good indicator Lyme is part of the problem. Otherwise, I am just a girl who’s been hit hard by the chronic virus bus; hopefully one who will get better over time.

There are no words to describe how upset I am right now.  I want to scream. I want to hide.  I want to make it stop.  I am not inspired to “look on the bright side” or “think about how much better I will feel someday.”  I want my life back.  Instead, it's back to the drawing board and more waiting.

Altered Today: Nothing

Comments

[Kathy Sheridan]

I am so sorry you do not have a definitive diagnosis! How frustrating for all of you. Of course you cannot think positive right this moment! It has dragged on and on. You just have to take it Moment by Moment.

My brother got Babesiosis when he was living on the Cape. he was so sick and they could not figure out what he had for 6 months! It was terrible, and he said getting a diagnosis made him not only better because he could be treated, but validated for him that he was not crazy! (We never thought he was...but he did!).
all I can say is.....hang in there.....out here we are rooting for you. Kathy

[Maria]

Big hugs!!!!!!!!!
Plus feeling impotent to help your self
plus so many Doctors so arrogant treating us like if we are just crazy ones to finally find the illness when it is too late...
Hugs for you big hugs
Maria

[Darlena]

I share your pain. I still don't have a positive Lyme diagnosis after 5 years, even from Igenex. They are located down the street from me so it's easy for me to get tested quickly.... I do test positive for Babesia there however and a positive 41. The only thing that has made me herx is detoxing on a raw diet. Mold in my new home kept me from getting better so have had all mold removed (very expensive)....now I am trying to get very alkaline. Have been herxing all week. I will never give up fighting....hang in there with me!!!

[Melissa]

Kathy, I am just speechless and so upset to hear this news. I wish I was there to give you a huge hug. When you feel up to it, please call. I am here and we will figure it out together!

[Kathy Tagudin]

Darlena,
Thanks for writing. I am sooo sorry to hear you are also dealing with this. Five years to boot. I can't imagine. Did you ever get treatment? Do you also have tons of viruses? Are you able to work? Would love to hear more about your experiences and how you cope. You must be an amazingly strong woman. I am going to try to look you up via Facebook and see if we can connect. Would love to talk more. Hang in there yourself.
xoxo,
Kathy

[Kathy Tagudin]

Thanks Kathy, Maria, and Melissa. Your love and support really means a lot.

[Donna]

So sorry about your feeling frustrated and sick of being sick.
My question to you is are you feeling any better from your antibiotic treatments?
As you mentioned, Lyme is a clinical diagnosis, not a laboratory one.
If you are being treated for Lyme, and are improving, that would be a good sign.
Another way to find out if you have Lyme is to go to a practitioner who does kinesiology. If they treat Lyme, they will either have homeopathic bottles that contain different amounts of Borrrelia in them, or actual slides of the Borellia and co-infections. They will not specifically say it is diagnostic, but what you have will attract what they have into your energy field, so if you are strong for these things, there is a good bet that it is LD.

[Shana]

Kathy, how come you decided not to test for the other tick related co-infections?

[Kathy Tagudin]

Thanks, Donna. I haven't started antibiotics yet; just got Doxy today (they want to see how that impacts pain, symptoms, etc). I am currently on Anti-virals...which, after a month, seem to improve my energy a bit, but make my pain worse (stiff neck, heavy arms, etc). Thanks for the tip on Kinesiology. I have heard good things about it and may head that way next, depending on what we decide about a second LLMD. Hope you are well. If you know this much about Lyme, you must be impacted by it. If that's the case, thanks for taking time out of your day to make a difference for me. I really appreciate it.

[Kathy Tagudin]

They might in a few weeks. My impression is the doctor wanted to see how Doxy impacts the situation before moving forward. If I have Lyme, I should experience massive die off in my body by that time (forces some strands out of hiding, forces other strands into cysts). From my understanding, some people will not pull positive test results ever and some will get them after having a Herx reaction. I believe the thought was at this point that he didn't want me to spend more money on more tests that may not be accurate at this point if I am not making antibodies. I need to do more research on this myself.

From what I've read (in one of the Lyme books)...
"With tests for several tick-borne illnesses not always reliable, and with overlapping non-specific symptoms, the treating doctor is often confronted with a dilemma. The problem faced by the doctor, responsible for improving the health of an often very seriously ill or debilitated patient, is that he or she must often resort to empiric treatment based on educated guesses, inferential reasoning, and observation of response (or lack of response) to trials of therapy. In other words, often the doctor must rely on “playing the percentages” in terms of what most likely is going on with the patient. While this approach may seem “unscientific,” this analytic approach is often necessary given the unsatisfactory diagnostic testing tools available today."

[Shana]

O.k. wow that makes sense. It sounds like you have a good Dr. who has seen this before. I know it's not the answer you were looking for but it is still progress ahead of where you were. Whenever I hear someone tell me "God does not gives us more then we can handle," I think to myself, I must be one tough cookie...That's you Kathy, one heck of a tough cookie :-)

[Robyn Barnes]

Oh, Kathy! I cannot even imagine your feelings at no conclusive results, even with what you've written here. I'm so sorry that you're dealing with this dissappointment along with your other pain and symptoms.

Still praying and sending love your way. Not sure what else I can do. Please let me know if there is a specific way I can support you!