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I've been sick for over a year and I'm scared.

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Lyme Disease
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Posted 7/14/2014 11:47 PM (GMT 0)
I am 20 years old and a United States citizen. One year ago I became very sick while traveling in Eastern Europe with my university program. I experienced extreme stomach pains, vomiting, diarrhea, nausea, fatigue, etc. When I returned home I tested positive for an h. pylori infection with ulcers and internal bleeding. I took amoxicillian, cipro, and one other antibiotic for 28 days. I became very ill from this and lost 20 pounds. My h. pylori was gone, but symptoms were getting worse.

A couple weeks later I had gallstones and needed my gallbladder removed. It had a stone the size of a marble and the organ was very hard to remove, according to my surgeon. I have read recently that Lyme can cause gallbladder dysfunction but I am not completely sure.

I never got better. Two months later I had influenza A and influenza B at the same time. I never bounced back from that. My symptoms were and still are:

-severe fatigue
-nausea
-headaches/migraines
-blurred vision
-vomiting
-irregular bowels
-post exertional malaise
-loss of appetite(slightly fixed with 12.5mg amitriptaline)
-insomnia
-anxiety/panic attacks
-light/heat sensitivity
-brain fog/neurological difficulties
-pain in hands, joints, shoulders, neck, knees, and hips(this is a new problem >2 months)

I could probably list more but this is what I came up with on the spot. I was misdiagnosed for months and months as depressed and anxious and tried about 6 different antidepressants and antianxieties to prove my doctor that I was not depressed. This did not change his mind as he always had a new pill for me to take.

I found a new doctor, a neurologist, who assumed chronic fatigue syndrome and ran extensive blood tests. I tested positive for HHV-6 and with extremely high levels of Epstein-Barr Virus EBV (>600). I had mono back in high school about five years ago and got better after about two months. My doctor concluded that it was CFIDS and gave me Valtrex 1g/2x daily. I have not noticed much change.

I recently had to move home from school as I cannot work. My mother took me to an integrative medicine doctor that suspected Lyme and ran a CD-57 test. My CD-57 results are 74, which she said was conclusive of Lyme disease but does not think I am healthy enough for antibiotics and has me on a multitude of supplements. I can list those if anyone wishes. I am currently waiting on the results from my Western Blot and my neuro is rechecking my EBV levels. My integrated medicine doctor wants to run an iSpot test as well, but it is $200.

I'm actually hoping that it is Lyme instead of Chronic Fatigue, because it seems I have a bit more of a change of survival and recovery with Lyme. I'm just scared and not mentally coping very well. If it is Lyme then I want antibiotics NOW. I have always been a workaholic and partier but have spent the past year of my life nearly housebound not knowing what is wrong with me. I'm upset at what this has done to me. I have never had panic attacks and thought my depression was a thing of the past. But after spending months in bed I can't help hating myself for what my life has become. My significant other lives back in my college town a few hours away and I'm scared my illness will affect that if I cannot return to classes next month. I hate being away from the things I love and I hate being sick. I have spent days completely bedridden and crying. I will be seeing a therapist on Thursday.

I have three questions for you all:

1. Do my CD-57 levels(74) indicate Lyme? What do my EBV and HHV6 papers mean if it is Lyme?

2. What treatment should I look for? There are no LLMDs in my state(South East US, if you know of a doctor in this area please message me, I am keeping my location secret for privacy reasons) and it seems antibiotics are the only way. I kind of want to go guns blazing with this and get all the treatment I can so I can regain my life.

3. Those of you with significant others- how do you cope with being sick/being so far away from them? How do you cope when it seems like life is moving by without you?
Posted 7/15/2014 12:48 AM (GMT 0)
Hi Asvedes!
Welcome to our community! I'm so sorry for all that you have experienced!

If you haven't already, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from.

To answer your direct questions:
1) No, the CD57 isn't a good indicator for Lyme or Chronic Lyme. Lyme patients that have been very sick for years can have a CD57 of over 100 and those with mild symptoms can have a very low CD57. It is one of several tests that can help determine if you have Lyme, but by itself it isn't a good diagnostic test for Lyme.

2)Guns blazing isn't usually a good way to go. What works for one person won't necessarily work for another either. This is a highly complex bacteria that creates a highly complex illness. There are some things that you will need to do in order to heal - if you have Lyme. From the symptoms that you listed, it's not clear that you have Lyme disease. Please refer to the symptom lists in the "New to Lyme?" thread that I mentioned above and compare your symptoms. This is actually the best way to gain an understand if you need to suspect Lyme or not. I would encourage you to get the iSpot test. Unlike many other Lyme tests that test for antibody responses, the iSpot test measures T cell response. Supposedly, T cell response kicks in just 4–6 days after infection.

3)This is by far the hardest question. Dealing with the emotional aspect of this disease and how we feel 'left behind' can hit hard. The best thing you can do is to help educate your significant other and keep lines of communication open. If you both do your best to understand what the other one is going through, have compassion for each other's situation, and realizing that this is most likely a temporary situation can definitely go a long way.

If you would send me an email, explaining the area where you would like to find a doctor, I can see if I have any referrals in that area. You can send me an email by clicking on either my name or the little blue envelope under my name on the left.
Posted 7/15/2014 2:34 AM (GMT 0)
Thanks for the response, Traveler. Funny thing- your post made me join this page because you said you have EBV too!

I've compared my symptoms to that page and I truly believe it is Lyme, however it doesn't seem that any test stands out the most and I haven't heard much about the iSpot. I think that if my Western Blot test comes back negative, I'll do the iSpot and then a test for all co-infections.

If I've been sick for so long(almost a year and the only tick bite i recall was 8 years ago) will the T-cell antibody iSpot test be accurate since it's not in the 4-6 day incubation period you mentioned?

And thank you about the emotional aspect. He's been completely understanding and visits almost every weekend. He's a lot more positive than I am and continues to remind me that it is only temporary, as I've been given time frames ranging from 8 months to two years for recovery. I think I'm just having a hard time understanding why someone would want to be with me when I don't want to be with me. But I am trying to communicate everything.

I'll send you an e-mail right now with my location! Thank you for all your posts, I really appreciate it!
Posted 7/15/2014 3:42 AM (GMT 0)
I agree with Traveler about the guns-blazing thing. Although I'm still new here, and new to really digging into treatments and info for Lyme myself, my parents have been looking into it for a long time and between what they've found and what I've read and heard of, it is a lot like Traveler said that everyone is very different. Full remission can take a long time for people to get to, and many of the lyme disease websites warn that it can take over a year (or multiple years) for some to feel fully recovered.
That being said, that's full recovery, or 90-95% better. Recovery from anything, whether it's physical or psychological, takes time. But that doesn't mean it'll stay exactly as horrible as it is now the entire time. You slowly improve day by day, even when you feel like you're making no progress, even if you have relapses, it's all a part of the recovery process.

I'm probably leagues more helpful when it comes to psychological stuff, though. My long term boyfriend and I are currently "broken up" right now, but we live in the same home. The break up ended up happening in a black out of memory that I had and I didn't find out until months later, and it was really hard on me. But, I can fully say that if the person loves and cares about you, things will stay okay. Things between him and I have improved, actually, and the more I learn about what's wrong with me the more he understands and is actually more optimistic than I am most of the time, haha. I think a big issue that happens when dealing with any kind of chronic illness and relationships is that we often get bogged down by anxiety and irrational thoughts that stop us from realizing the logic of our situation. For instance, lately I've been having bad flare ups and in turn my anxiety hasn't stopped for three weeks now, and I keep thinking he doesn't want me around anymore. But it's helpful to learn how to thought-challenge yourself and I can logically realize that nothing has changed, he's still being supportive, we're still okay. I'm just sicker right now so we're not able to do as much, and that's okay.
I think the important thing is that when you love someone, any time you get to spend with them is cherishable. It doesn't matter if they're sick, or tired, or need to take naps every two hours, or in pain or what have you. What matters is they get to know you simply exist, and that's enough. Bonus if they get to be near you as you're in existence.
Ask yourself the same question. If the roles were reversed, and he was in your position, would you still want to be with him? I imagine the answer is likely yes, and chances are your reasons for wanting to stay with him are exactly the same reasons he has for wanting to be with you. :)
Posted 7/15/2014 8:46 PM (GMT 0)
Very well said, Ellip!
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LOL! That's just funny Asvedes!!

I know what you mean, Asvedes. I and many others here too have used those exact words: "I'm just having a hard time understanding why someone would want to be with me when I don't want to be with me." I just didn't get it, but I am more than glad that my husband didn't leave like I wanted him to several times!!!

As Ellip said - "If the roles were reversed, and he was in your position, would you still want to be with him? I imagine the answer is likely yes"

He wants to be with you, as the saying goes, 'in sickness and health", which is a lot more than many women get!! Realize that it's the Lyme talking when you feel like you don't want him around simply because you don't want to be around anyone.

Hang in there and work through this.

I'm not very well read on the iSpot. All I know is that it is still measuring an antibody response, although likely a more accurate one. I sure wouldn't tell someone they don't have Lyme though simply because the iSpot was negative. I still think that a clinical assessment is the best one. There are a few other conditions a person could check into, but if there are a lot of Lyme symptoms- so that it would require that the person have 4 or 5 different conditions at the same time in order to create that many symptoms - then Lyme needs to be suspected and an anti-infective trial should take place.
Just my 2 cents!
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