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Posted 1/2/2013 2:30 PM (GMT -5)
Doctor said I do not have lyme , but have epstein-Bar, the highest he has ever seen, it should be below 21.9, mine is 599.9. Also I am positive for Hsv, which is herpes, can anyone tell me if there is a link?

I googled it, and I think it is somehow linked to the Lyme disease.

Please let me know, he wants me to stop all meds, and I am scared. Thank you.
Posted 1/2/2013 4:30 PM (GMT -5)
Hey just me -
It's funny about the ebv. When I look back at my childhood records after the tick bite, the doc suspected chronic ebv. He ruled it out after a test and said I was healthy and must be just complaining.

So, fast forward to today and I have tested positive for ebv, herpes 6, mycoplasma and a few other infections which apparently like to follow or come with lyme. From what I've heard many ticks carry these viruses or your immune system is so low that it creates the ideal breeding ground for these types of infections. There are lots of references to this out there so whether you just have ebv or both lyme and ebv, both are possible.

I am guessing that if your symptoms have been ongoing for years then likely you have lyme and ebv. If they are more recent then it could be either. From what I know about ebv it is the underlying infection/virus(?) of mono which can cause your spleen to tear if not treated (that is what my doc told me in highschool when I was diagnosed ). I've been told that if you have an active infection it should be treated right away as left untreated can be bad.

For chronic infections I've been treated with antiviral herbs. For active infections I was treated with steroids. If you have an active ebv infection and lyme I'm not sure what you should do. I am sorry I can't help more. I had a horrible case of poison ivy this summer all I've my face and as a result my LLMD gave me permission to take steroids and said he would be able to treat the lyme after. It did make it harder for me to treat the lyme for a few months after but without the steroids for 3 months.

Good luck with whatever path you take. If you don't have an LLMD, maybe you could talk to an integrative doc that takes insurance. They tend to be more open minded.
Posted 1/2/2013 5:40 PM (GMT -5)
Today was just a horrible day, I had a bad seizure at work, and they called emt's. Of course the hospital can't do anything for me, I just got out a few days ago. So I went to the infecious disease doctor, who had my results.

He said I have mono, should be below 21, mine is at 599, also he said I have herpes 1 and 2. I am ticking off my family but I don't believe it. He said I did not have Lyme anymore. All my symptoms from Lyme are still the same, nothing has changed, buy I am cured no I do not think so.

I did speak to a LLMD today, and she confirmed my thoughts, she said the Lyme was doing this. I am hoping to go see her really soon.

Thank you.
Posted 1/2/2013 6:40 PM (GMT -5)
Good luck just me. I think that it's important for you to find a good doc at this point as they will help you tremendously.
Posted 1/2/2013 8:22 PM (GMT -5)
My previous LLMD said that Lyme infections trigger dormant viral infections to be active and cause symptoms. I have HHV6, which he said is very prevelant and is normally benign, but when the immune system is strained by an illness (such as Lyme), it can cause symptoms/become active.

Go w/ your gut instincts...you know that you had/have Lyme Disease, that your symptoms haven't improved, and that you were treated inadequately for the Lyme infection. It's wonderful that you were able to talk to a LLMD and hopefully you can get under a good treatment plan soon.

There are herbal or pharmalogical anti-virals that your LLMD may want you to start, along w/ Lyme treatment.

How does your ID Dr. explain the seizures and other neuro. type symptoms? Does he think that Epstein Barr and HSV are causing that?!?! What kind of treatment is he recommending for that? Antivirals?
Posted 1/3/2013 7:01 AM (GMT -5)
He isn't treating the seizures , with muscle relaxers, guess what they are not working. Last night was the worst night of seizures I ever had. I am calling him today, and telling him this is not working. He said he would send me to Northwestern Hospital for a second opinion or the Mayo clinic in MInn. So I am gong to have him just send me to Northwestern , I am getting worse. I looked into Northwestern they have two LLMD on staff.

Even If I have all three, it started with the Lyme, and I think the lyme needs to be treated first, and then worry about the other viruses. I am using a cane, I lost most of the mobility of my legs, I am shaking from the Lyme, or whatever else that is going on.

Thank you

Justme
Posted 1/3/2013 7:42 AM (GMT -5)
I am so sorry,you poor thing, you must be terrified.

Sending big hugs from across the ocean.

Good luck

Tickled
Posted 1/3/2013 10:11 AM (GMT -5)
Justme, I am still fairly new to all of this, but I can tell you from my research that when I read your original post I definitely thought of Lyme as the underlying cause. I'm so glad you have an LLMD to back you up! Please go with your instincts. I've been having a hard time doing this myself lately, so I know it's hard!

I completely agree that Lyme seems to be the main source of all of these issues and that must be treated first and foremost! It sounds likely that once the Lyme is addressed the other issues will clear up (once your immune system goes back to normal).

Which kind of muscle relaxers are you currently taking? I'm trying to decide what to ask my doc for next. I think I'm on the verge of seizures...if its possible to know this...because I'm having spells where I shake and jerk. It's very scary! So I'm thinking of asking about Valium. I haven't been sleeping at all lately, so I hope this will help at night time (when the jerks and trembling are the worst). I've tried Flexiril, Robaxin, and Zanaflex and had adverse reactions to each of those. I'm hoping something (like Valium) can help with multiple issues- tremors, anxiety, sleep!!! Between Xanax and valium which do you recommend? I want something pretty mild, if possible!

Any idea when you can be seen at Northwestern? I hope it's soon so that you can get some answers! Good luck, hope you're feeling better today!
Posted 1/3/2013 10:59 AM (GMT -5)
Justme,
You definitely seem to have a understanding of what your poor body is going through/dealing with. Good for you! That will save you from following bad info - even if it comes from a doctor! Stand your ground - even with your family if you have to. You are the only one who really knows what you are experiencing.

Is there any way that LLMD that you spoke to could work you in sooner? Especially since your seizures are getting worse? You could ask to be called if there are any cancellations - if you haven't already.

I can only echo the things that have been said here - Lyme often triggers what would be otherwise dormant viruses. 99% of the adults carry EBV, but it remains dormant because their immune systems can keep it dormant. Same for the other viruses -chances are pretty high that your immune system could have kept them dormant if you didn't have Lyme disease and other possible infections.

Personally, I've take anti-viral herbs during my treatments for the different tick-borne infections and haven't had much trouble from the viral issues I had.

Stand your ground. Don't stop the herbs if you know they aren't causing the seizures - it's not like we all think ID docs know all there is to know about Lyme and the other tick-borne infections anyway! Listen to the LLMD's and any Master Herbalists that understand Lyme that you can talk with.

Speaking of that - have you tried messaging Stephan Buhner yet and asking him about the herbs possibly having something to do with the seizures? If not, I would encourage you to do so. Maybe even go to the Hansa Center site and use the chat and ask there as well. It sure couldn't hurt from my point of view, and could give you more information on what's going on. Otherwise you could find a reputable Master Herbalist in your area and ask if the herbs you are using could be causing your seizures.

Just a few thoughts. Still keeping you in my daily thoughts. Hang in there!
Posted 1/3/2013 2:00 PM (GMT -5)
Justme,

I agree with others have said. A doc tried to play that game with us too- that Heather's high EBV titer results were responsible for all of her severe symptoms. It is hogwash! Please stick to your convictions for your own sake. Enough said.
Posted 1/3/2013 6:23 PM (GMT -5)
I have a LLMD going to see me on January 28th, I had the seizures all along, but the doctors here tried to put it on the herbal medication. I just can't sit back, and have to tell me I have sexually transmitted diseases, or something similiar, and be neg for Lyme. I do have a appoint at the best hospital in Illinois, but I am not sure they will be able to help me.

I spoke to a LLMD , she conformed what I was thinking, the Lyme started this, she called me herself today, and I asked questions she made me feel comfortable. One of the only reasons I am going to the other doctor, is if I can get some of the test covered that I need paid for by my insurance that will help me. I pay over 600 a month for insurance so I am trying to get as much out of them as I can. I had them do two this week , and insurance covered it.

I only worked two days this week, so any money I don't have to spend I can feed my family with. Also this new LLMD that I found , is very affordable, and I already had her checked out, and got a couple of reference about her. To date I am not sure how many doctors I have seen, or how much money I have spent , on test that I didn't need over and over.

The funny thing to me is , that the doctor yesterday told me I didn't look sick enough. That my ebv was so high, and so was the other virus, that I should be really sick. I said I can't walk, I have daily seizures, how sick do I have to be???

For me, I do not know if antibiotics is the answer, I did try it, and I had horrible side effects. So I think I need to take my health into my own hands.

Thank you all.
Posted 1/3/2013 9:17 PM (GMT -5)
Hey Justme. I'm so sorry the seizures are worse today. Trav had great advice to message Stephen Buhner. Yes, it sounds like the muscle relaxers aren't working and are possibly worsening your symptoms. I took meds. that Drs. prescribed me before I knew I had Lyme. Meds that they gave me to "help" symptoms and I had very serious side-effects and worsening of my symptoms so I stopped them immediately. You know your body so trust your instincts.

You're right that although Northwestern is a very good hospital, there is a good chance that they won't be able to help you. But, you're very smart to think about some additional testing being covered through insurance there.

As far as abx., I wouldn't completely give up on that route of treatment yet. Didn't you only take Doxy? Was it for 3 month? There could be a lot of reasons that Doxy worsened your symptoms. The first thing that comes to my mind is that you have untreated co-infections that really flared once Lyme treatment started. That's what happened to me and now that I'm on an abx. for Bartonella, along w/ 2 for Lyme, I'm seeing a little improvement. Your new LLMD may want to try abx. so just be aware of that.

Also, did you get my e-mail w/ my LLMD in IN? I hope that info. helped. Not sure whether or not that is the Dr. that you talked to.

I've been praying for you. Hang in there! You are very strong and it's awesome that you are able to advocate for yourself in the midst of being so ill. Keep at it! You can do this!
Posted 1/4/2013 5:47 AM (GMT -5)
Lymer, I can't send you a email, but what I found works best for my seizures is Valium. The pumped me in the hospital with it the first time, now I take a half of a pill when they start to come on.

I am now looking into a more natural approach , something herbal but it the mean time, it does help calm them down. The other muscle relaxer just made it worse not better. I hope this helps. also take a really warm bath seems to help with some of the stiffness that I experience afterwards.

justme.
Posted 1/4/2013 5:51 AM (GMT -5)
Thank you all, yes they only had me on doxy for three months , oral form. When I didn't get better, I was told they couldn't help me anymore. So it's been doctor after doctor. I have lost my ability to drive because of the seizures, so I found a local llmd, that is only 30 minutes away. I am not sure how much back and forth I will need to go, and I didn't want to put anymore strain on my Husband, he has been through enough helping me with all of this.

Just me.
Posted 1/4/2013 9:40 PM (GMT -5)
Justme, thanks for that info! I'm going to ask my doc about it at my next appt. I'm not sure how I'm going to ask though, considering he already "ruled out lyme" and I can't see an LLMD until feb. So frustrating! Anyway, I know you have a lot going on right now so I really appreciate the fact that you took the time to respond to my questions!

Are you feeling any better, and are the seizures letting up at all?

Btw thanks for reminding me...I need to enable my email. Idk how to do it from my phone and my laptop is down, but I need to figure it out!! :)
Posted 1/4/2013 10:21 PM (GMT -5)
They all rule out lyme for some reason really fast, yet our we have all the lyme symptoms. Just say you need something to relax your body because it is shaking. It doesn't stop the seizures but for me it has helped slow them down quite a bit. Now I know everyone is different , but it does help me.


They put me on new seizure medication , I forget the name but it make them worse. Also I noticed for me if I take a really warm bath it helps some.
Posted 1/4/2013 11:00 PM (GMT -5)
Justme..oh gosh. Hang in there!

Ditto Heather's Dad.

I also echo Traveler in trying to private message or call Buhner and ask if those herbs could cause seizures.

And/or do the chat feature on the Hansa website...ask for help or a phone consult to get help for the immediate relief of the seizures. Those doctors are extremely knowledgeable.


Do not give up until you find a doctor who respects you and listens. I have had three doctors like that...all listened, all respected my choices and all understood the myriad ways lyme can affect the body. One was also willing to treat me without abx, even though he wanted me to take them. He was still willing and suggested Cowden protocol. I chose to find another doctor, however, who was more experienced.

The main thing is to get those seizures down so you are stable. And then find a good LLMD or LLND!


I wouldn't worry about the 30 minute drive, honey. You are worth it! Your worth is unlimited :) certainly not limited by distance or anything else

You are in my thoughts and prayers!
Nan
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