Anyone out there dealing with Lyme Disease or know someone who has? (Advice Needed)

I'm writing this about my husband, after a year of sickness and frustration he's been dealing with. Early last spring he found a DEAD deer tick attached to the inside of his arm. It was tiny, we thought it was a baby, and we googled deer tick images and that's exactly what it was. It wasn't like the other ticks we would more often see. There was also redness around it. We thought, "Hah, that's weird. Probably should keep an eye on that."
In hindsight, the stupidest thing we did was not saving that tick.

Shortly after he started feeling achy and kind of sick. He immediately suspected lyme disease and went to the dr. and told him everything. They put him on 3 weeks of doxycyclene. (not sure about my spelling on that!) The one Lyme Disease test they ran came back negative, so they really didn't take it seriously, but gave him the antibiotics anyway. We read that it has to be treated at least a month, but the dr didn't think so. He took them and got better. Not too long after the meds were done, the symptoms slowly started to come back. His knees, elbows, fingers, everything was stiff and hurt to move. It slowly got worse. The doctor ran tests on him, couldn't find anything wrong, and little to no inflammation was detected. Dr sent him to a infectious disease doctor who also didn't find anything wrong. They're thinking fibromyalgia or sleep apnea and want to do a bunch more tests in that direction.
Meanwhile, my husband who's always been a very intelligent thinker and highly motivated, is now having trouble concentrating and complains of being "foggy" in his head and can't think of the words he wants to use. He has no energy and is getting grumpy and depressed that no one has been able to help as he continues to deteriorate. This is so NOT like him at all. (he's in his mid 30s) While the pain doesn't so much bother him, the constant fog he's in is really starting to get to him. It makes it hard for him to do his work and drive. When we read about Lyme Disease, it fits him so completely it's crazy. After seeing a few different local doctors over the last year, he's gotten nowhere. He sometimes feels a off balance and his vision is sometimes affected, though not severely.

We're at the point where we are considering traveling anywhere we need to go to get a Lyme Disease specialist who can treat him, or rule out for definite that he does not have it. The one test he had early on came up negative, but that is common with many Lyme tests I understand, and his symptoms persist.
Does anyone have ideas, suggestions, anything??? We're getting desperate here. I'm worried my husband may never get back to his old self again.
Thank goodness we got guineas after this happened last year, and we've seen very few even though tick season this year has been awful. I worry this could happen to my kids or myself too, so I'm always watching out for them!
Thanks in advance for any ideas.

Try this link for some information, sorry your husband is going through this.

http://www.cdc.gov/lyme/postLDS/index.html

Thanks for the link! That is very interesting and helpful.

I am still concerned since his treatment has been longer than 6 months ago and he's continuing to get worse to the point we're really worried this isn't going to get better. Also, no one has been able to conclusively rule in or rule out Lyme Disease. I am hoping there is somewhere out there that would be a good place to consult, and although it's a longshot, hoping someone around here may have had a similar situation. He has been trying to eat well, eliminated soda from his diet, and continues to push himself to exercise, yet he still gets worse. He isn't having issues sleeping. Pain reliever does help all of the symptoms except the head fogginess/concentration issues. I don't think this is the post treatment symptoms since it has been getting worse for so long....

I am so sorry to hear about this. I can totally understand. Don't give up! Has he been to a neurologist?

A family friend contracted Lyme disease a few years ago. They had him on daily IV antibiotics for three months. Sometimes with doctors you have to be persistent. His first test for Lyme disease came back negative too. I was only with the help of a specialist, that he finally resolved his problems. If that doctor does not listen to you, find someone who will. Best of luck.

One the mods here, who isn't here much, has Lyme disease. I linked this post for her, hopefully she will pop in.

I am one of the people that believes in Chronic Lyme disease. I had Stage 3 Lyme when I was 5 (Now 25) and I still deal with Achy joints, Depression, Lethargia (sp?), and I have always had trouble concentrating. Lyme would explain this all, and I truly believe that Chronic Lyme exists, as I feel the pain of it. And just want to warn you, my husband just learned in Nursing School the Lyme Disease is considered a STD, if it still active in the body.

Shayna said:

I'm writing this about my husband, after a year of sickness and frustration he's been dealing with. Early last spring he found a DEAD deer tick attached to the inside of his arm. It was tiny, we thought it was a baby, and we googled deer tick images and that's exactly what it was. It wasn't like the other ticks we would more often see. There was also redness around it. We thought, "Hah, that's weird. Probably should keep an eye on that."
In hindsight, the stupidest thing we did was not saving that tick.

Shortly after he started feeling achy and kind of sick. He immediately suspected lyme disease and went to the dr. and told him everything. They put him on 3 weeks of doxycyclene. (not sure about my spelling on that!) The one Lyme Disease test they ran came back negative, so they really didn't take it seriously, but gave him the antibiotics anyway. We read that it has to be treated at least a month, but the dr didn't think so. He took them and got better. Not too long after the meds were done, the symptoms slowly started to come back. His knees, elbows, fingers, everything was stiff and hurt to move. It slowly got worse. The doctor ran tests on him, couldn't find anything wrong, and little to no inflammation was detected. Dr sent him to a infectious disease doctor who also didn't find anything wrong. They're thinking fibromyalgia or sleep apnea and want to do a bunch more tests in that direction.
Meanwhile, my husband who's always been a very intelligent thinker and highly motivated, is now having trouble concentrating and complains of being "foggy" in his head and can't think of the words he wants to use. He has no energy and is getting grumpy and depressed that no one has been able to help as he continues to deteriorate. This is so NOT like him at all. (he's in his mid 30s) While the pain doesn't so much bother him, the constant fog he's in is really starting to get to him. It makes it hard for him to do his work and drive. When we read about Lyme Disease, it fits him so completely it's crazy. After seeing a few different local doctors over the last year, he's gotten nowhere. He sometimes feels a off balance and his vision is sometimes affected, though not severely.

We're at the point where we are considering traveling anywhere we need to go to get a Lyme Disease specialist who can treat him, or rule out for definite that he does not have it. The one test he had early on came up negative, but that is common with many Lyme tests I understand, and his symptoms persist.
Does anyone have ideas, suggestions, anything??? We're getting desperate here. I'm worried my husband may never get back to his old self again.
Thank goodness we got guineas after this happened last year, and we've seen very few even though tick season this year has been awful. I worry this could happen to my kids or myself too, so I'm always watching out for them!
Thanks in advance for any ideas.

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Your husband has 'gone chronic' with the Lyme disease, it is now in his spinal column (thus undetectable by the standard lousy tests), and it's going to take a long term of IV meds to get rid of it. Lyme disease almost killed me in 2009, I had all of the symptoms you listed above, but mine turned into Lyme meningitis with paralysis, I ended up in intensive care in the hospital for eight days, literally almost dead before they figured out what was wrong. I went home with a PICC line and a month of IV antibiotics. Now I'll deal with the after effects for the rest of my life. Where do you live? You need to get to a good medical facility that is familiar with Lyme. Do not listen to your current doctors. I don't mean to alarm you but I've been there and thankfully lived through it. I went to my doctor 18 months prior to my collapse with a deer tick bite, handed him the tick, he did nothing with it, did a blood test which came back negative (of course it did, I'd just been bitten), a prescription of amoxicillin and sent me home. When the test came up negative he told me I was fine. I wasn't. I was back in his office several times with raging headaches, neck aches, etc. and actually sent home from the hospital five days before I finally collapsed. Doctors are amazingly ignorant when it comes to Lyme. Don't give up.

I've just read through the thread more. Lyme is NOT an STD, it is, however, caused by an organism similar to the one that causes syphilis, a spyrochete, and it acts the same way, by causing illness then burrowing into the spinal column, where it lies dormant, until it resurfaces and wreaks its havoc.

Thank you to everyone for the info! You have all confirmed my gut feeling that we need to press harder at getting this resolved soon.

Reinbeau - what a close call! I'm glad you recovered ok. I hope my husband is not at the chronic stage at this point, but we will certainly be trying to get him in to a new doctor this week.

My husband and I have done a ton of online looking and did come across somewhere that there is research to determine if Lyme could be contagious, but at this point that hasn't ever been linked so isn't likely the case. Regardless, my husband is sick and we need to get him better asap.

Thanks again for all the info, we will continue to move forward and find someone who can help!

It's not considered a STD, but when it is ACTIVE in the body, it can be sexually transmitted, and even transmitted through blood, but it has to be active. My husband learned about it last week during his Nursing finals, and then researched it, becuase I had Lyme, and do deal with the after effects of it, and last thing we want is for him to contract it. So no it's not listed as an STD, but if it is active in the body, it can be sexually transmitted.