The Lyme Disease Thread

[dlp252]

Bob, that's really why I went through with the testing...my thought was that I could rule it out...never imagined it would come back positive, lol.

Your scope sounds about the same as mine...I had some damage to the bottom of my esophagus and a stomach polyp, but the rest looked okay until they got down to the bile ducts, lol.

The LLMD I see is in Los Altos, he is not really on the list of LLMDs you'd get at LN, but he works in the same office as one very well known LLMD, and another who is also on the "list". There is a very well known LLMD in San Francisco (Dr. S...I also see a Dr. S but it's not the same guy). So I'm not sure which would be easier for you...or you could wait until after your move. If you post your western blot results on LN, you'll get some opinions as to what they mean.

[Cruiser Bob]

Thanks Carla & Donna, it's wait and see now.

The funny is that I have a round ring on the left side of my chest - but it's from the floaty thing that gave me a huge hickey on my side, after floating for an hour or so in the Lake. Got me going at first, but then I fugred it out.

Now to gross everyone out: I think in about 1995/6 I was camping at Hart Mtn Hot Springs (SE Oregon) and woke up with ticks crawling on me and another 5-10 in my sleeping bag, I wasn't aware of a bite, but who knows. I've lived with west coast ticks my entire life and don't know of any bites since I was a kid 5-7 years old. Ticks, mosquitos, rattle snakes and black widows. I have enjoyed not having eye closing poision oak for the last 30 years at least.

Bob

[happygirl]

Bob, I'm happy that you got tested. It takes about 10 business days from the day it is sent out. Keep us updated!

I was dx'ed with Lyme (indicative blood tests), and tested positive for babesia, anaplasmosis, ehrlichiosis, and rocky mountain spotted fever. I've never even seen a tick, but apparently, I got bit by a really icky one!

[happygirl]

duplicate post.

[AndreaB]

Bob,

I don't know where you will be in Oregon but I believe Sherry is originally from the Portland area so I assume her doctor is somewhere in the area.

[AndreaB]

I've never even seen a tick, but apparently, I got bit by a really icky one!

Definately! But, is there any not so icky tick?

[happygirl]

Definately! But, is there any not so icky tick?

I like to joke that I'm such an overachiever that I couldn't just get one tick borne disease, I had to get almost all of them

[CarlaB]

Bob, you sound like I did ... I had tick bites as a kid, but didn't believe I could be sick from it now. With that kind of tick history and with the symptoms you've been having, I would be surprised if you didn't have it ... I mean, I hope you don't, but ....

Most of the time I've had Lyme I've had minor symptoms. I've had four times where they got more serious, but I always came out of it. This time the illness has lasted for 4 1/2 years ... so you could have had it since you were a child and only now be developing symptoms.

I'll be anxious to hear your results.

Good job covering all the coinfections, Laura.

[sedunk]

Greetings Carla,

Any toughts on this. I have had a lot of tests in the past few weeks. I was tested for Lyme Disease in June. I had a large bite on my leg . My boyfriend is a Conservation Officer and he often brings ticks home with him, not a fun thing!

When I contacted my doctor's office they told me that my test was negative. I have been back in the office for allergies and celiac issues. Today I had blood work done and the lab tech wanted to know if I was here for my follow up Lyme test, since my other test was positive. She said one of the two antibodies was positive in my last test. Apparently both antibodies have to be positive for a true Lyme case. Any thougths? I will receive my test results next week.

I am new to this Celiac business and have been sooooooooooooo tired!

Any suggestions would be greatly appreciated.

Many thanks

Sara

[CarlaB]

Sara, I would ask for copies of your tests because things like you are describing seem to happen all the time. My Western Blot was CDC positive, yet my doctor told me it was a negative test.

If the test was done too soon after the bite, then it would be negative because the antibodies didn't have time to build up.

Was your bite from a tick? If you did and if you had the bull's eye rash, that is diagnostic for Lyme Disease. If you had a tick bite and a rash, you should have been put on abx immediately!

I would go to Lame Advertisement to the seeking doctors section and ask where there's an LLMD near you. You may have to travel, but I wouldn't sit on this too long ... if you catch it early, you can be cured, but if it becomes a disseminated disease, then you are only working toward remission. I wouldn't mess around with doctors who don't really understand Lyme ... you would go to a specialist if you suspected cancer ... I'd get to a specialist for this, too.

The fatigue could very well be from the Lyme ... Lyme causes crushing fatigue! It's a symptom of celiac, too, though.

If you can get your test results and post them, maybe one of us can help you, but from your comment I can't tell what your test results mean ... it may be a screening test, which is known for it's inaccuracy ... if it's the Western Blot, then you only need either the IgG or IgM to be positive, not both.

[sedunk]

Greetings Carla,

I am not sure what kind of test the doctor used. I know I had a bite in End of May / Beginning of June and was tested then. I was told it was negative. I didn't find the tick, but had a bulls eye on my leg. I was told that

there are two antibodies that they are looking for and one was positive, but the other was negative!

I have to tell you I can't stand my doctor. She told me that if I tested positive for Celiac I would just need to change my diet and I would be fine. I am calling her tomorrow and will let you know what I find out.

Thanks for the information

Sara

Sara, I would ask for copies of your tests because things like you are describing seem to happen all the time. My Western Blot was CDC positive, yet my doctor told me it was a negative test.

If the test was done too soon after the bite, then it would be negative because the antibodies didn't have time to build up.

Was your bite from a tick? If you did and if you had the bull's eye rash, that is diagnostic for Lyme Disease. If you had a tick bite and a rash, you should have been put on abx immediately!

I would go to Lame Advertisement to the seeking doctors section and ask where there's an LLMD near you. You may have to travel, but I wouldn't sit on this too long ... if you catch it early, you can be cured, but if it becomes a disseminated disease, then you are only working toward remission. I wouldn't mess around with doctors who don't really understand Lyme ... you would go to a specialist if you suspected cancer ... I'd get to a specialist for this, too.

The fatigue could very well be from the Lyme ... Lyme causes crushing fatigue! It's a symptom of celiac, too, though.

If you can get your test results and post them, maybe one of us can help you, but from your comment I can't tell what your test results mean ... it may be a screening test, which is known for it's inaccuracy ... if it's the Western Blot, then you only need either the IgG or IgM to be positive, not both.

[CarlaB]

Sara, if you had a bull's eye rash back in May, you need to get to an LLMD asap. Go ahead and get the test results from your doctor, but he should have treated based on the rash. Right after a bite, the tests will be negative, it takes time to form the antibodies and have them show in the test.

Go to Lame Advertisement and post in seeking doctors to find an LLMD. Don't wait ... you really don't want to get as sick as I am.

Keep us posted!

[sedunk]

Greetings Carla,

I just had my doctor's appointment yesterday. What a nightmare. I have eczema for four years and terrible allergies. I had written before and told you that I thought I had Lyme Disease. I had a huge bite on my leg with a bull's eye. My boyfriend is the Conservation Officer, his house always has ticks.

I was tested in June, using the Western Blot test. It showed one positive antibody at that time. I had a second test this week. The entire test came back negative. Do you think I could still have Lym Disease?

I have not had Gluten in almost 3 weeks, 2 weeks prior to my celiac test. The only thing that the doctors have been able to tell me is that I allergic to wheat, almonds and I am anemic. My liver numbers were up by .2 . Not anything to be alarmed about according to my doctor . Since I hadn't had wheat, do you still think I could have Celiac's?

I have been so tired the entire summer and fingers, elbows and knees have been really stiff and sore.

My Doctor thinks I am not getting enough sleep and wants to put me on sleeping pills and muscle relaxers. I told her I didn't think so and she told me that I had an anxiety disorder about taking pills. This is the same woman that told me PMS was BS. The birth control pills I was on made me crazy, I think they may have had wheat in them.

Needless to say I will be finding a new doctor. I still have more allergy testing in the near future.

What do you think?

Sara

[CarlaB]

First, I think that most Lyme tests are highly unreliable, so if you didn't have an IGeneX test, I would disregard the results. Though celiac can also cause sore joints, Lyme hits elbows, fingers and knees, that along with the bull's eye rash and excema (I got skin rashes prior to Lyme treatment) makes me think Lyme is a distinct possibility and worth looking into with a Lyme specialist.

As far as celiac, you should have stayed on gluten until the tests, but it's too late for that. The celiac tests can have false negatives, plus if you're gluten intolerant but not celiac, it won't show up at all. I would stay on the gluten-free diet and see what your dietary response is, especially since you know you are allergic to wheat anyway. Eating food you are sensitive to puts unnecessary stress on your immune system.

If I were going to place a bet on what's wrong, with your history, I'd bet on Lyme. But you really need a doctor for diagnosis. It's highly unlikely to get diagnosed or properly treated by just any doctor, you will need one who specializes in Lyme.

The LLMD's do a differential diagnosis, testing for everything. Often it's a combination of problems that brings us down, plus they want to rule out everything they can, so if it's not Lyme, a good LLMD will still figure out what's wrong with you.

I'm finally starting to get my life back ... I hope you can find out what's wrong so you can, too.

[Cruiser Bob]

Tick, tick, tick -oops, I mean wait, wait, wait. It'll probably be another week and half for me to get my test results since I'll be out the later half of next week.

Sara - If no lyme, you might think about cutting nightshades (the rest of the favorite foods ). Tomato, potato, peppers, eggplant. They have a correlation with arthritis type joint pain. You just may have some additional food sensitivities that have taken advantage of your system. Bob

[mftnchn]

Just a note that lyme can attack other joints as well. I particularly notice it gives me pain in any of the extremities, either joints or searing nerve pains, plus upper back, neck and shoulders.

I agree if you have had a bull's eye rash, don't wait around, and don't rely on a doctor who is not an LLMD. It is just not worth the risk of getting this nasty chronic disease.

[sedunk]

Just a note that lyme can attack other joints as well. I particularly notice it gives me pain in any of the extremities, either joints or searing nerve pains, plus upper back, neck and shoulders.

I agree if you have had a bull's eye rash, don't wait around, and don't rely on a doctor who is not an LLMD. It is just not worth the risk of getting this nasty chronic disease.

Many thanks for the information

Sara

[sedunk]

Just a note that lyme can attack other joints as well. I particularly notice it gives me pain in any of the extremities, either joints or searing nerve pains, plus upper back, neck and shoulders.

I agree if you have had a bull's eye rash, don't wait around, and don't rely on a doctor who is not an LLMD. It is just not worth the risk of getting this nasty chronic disease.

Many thanks for all the information. That is interesting about the nightshade foods. I eat a ton of red peppers, potato and tomato. Yikes. This is not fun. I am so picky.

I am so stressed. I teach 6th grade and need to go back to school in 3 weeks. I am so tired. At this rate I am going to be sleeping under my desk!

Does anyone know of a LLMD in NH . I plan on getting a new PCP from Dartmouth ASAP.

[brenda07]

I just started on this forum and I too have celiac I was diagnosed Nov. of 2004, as the years have gone on, since I was 18 years old, I have been diagnosed with, migraines, depression, H Pylori infection, slow emptying stomach, osteopenia, endometriosis at 27 and had to have a hystrectomy, interstitial cystis 3 years ago and fibromyalgia just a few months ago, I am now waiting to get tested for LYme disease on Friday from my doctor, as a young child I spent almost every weekend in Wisc. with my family and every summer, until I was 14, my dad was diagnosed with LYme disease and did alot of research on the disease and e-mailed me with some info. on it and told me that it sounded alot like the things I have been dealing with for years, so now I am going to the dr. on Friday and getting blood work drawn to see if this could possibly be part of my problems. From the list of things that could be symptoms I think I had over half of them. I know I wake up at night in so much pain that I can hardly move. At the age of 34, most days I feel like I am going on 80, I have horrible migraines, which started when I was just 12 and I take a preventative for those every day. I was lucky enough to have two beautiful children even though I had an awful case of endometriosis which cased me to have a hystrorectomy at the age of 27. So right now I try to take each day as it comes whether it be good or bad, which right now most days are more on the bad side, I am always tired and I never feel like I have gotten any sleep, each day is a battle to get through, my moods swings are awful and it is very hard some days just getting out of bed, luckily I have a wonderful man who loves me and tries his best to understand just what I am going through, even though at times, I have no idea what the hell is going on in my head or with my body. My kids are very patient and understanding too, but there are days I just want to be "normal" and healthy, I feel sometimes like I have taken away part of their childhood with being sick and it makes me sad, but my kids are here everyday to hug me and kiss me and tell me it's ok mom we love you.

Thanks for listening, it helps knowing.. I'm not alone.

[CarlaB]

Does anyone know of a LLMD in NH . I plan on getting a new PCP from Dartmouth ASAP.

I would suggest posting under the seeking doctors section on Lame Advertisement.

Brenda, I wish you luck with the testing. Be sure they use IGeneX. I'm sure your dad has filled you in on the situation with Lyme and most doctors. Most don't want to diagnose it at all. Read through this whole thread, there is a lot of good information on it.

My kids have done great with my illness. I believe it has taught them a level of compassion that they otherwise would not have had. It's also taught them responsibility because I simply cannot do all that other moms do.

On the bright side, I AM getting better. I have improved significantly and am starting to get my life back. This diagnosis has been a blessing because I've been able to get treated for it.

[mftnchn]

Welcome Brenda. Glad you are here. Keep us updated on your journey.

[brenda07]

Welcome Brenda. Glad you are here. Keep us updated on your journey.

thank you, i will let you know what i find out. My doctor is very supportive and has been great since the day I walked into her office over 13 years ago, whenever I bring up a new issue she is always sure to address it, without her I don't know where I would be at today. thanks for your support.

[dlp252]

thank you, i will let you know what i find out. My doctor is very supportive and has been great since the day I walked into her office over 13 years ago, whenever I bring up a new issue she is always sure to address it, without her I don't know where I would be at today. thanks for your support.

Isn't it amazing what a little support will do. I never knew how important it was to have that support from my doctors until I finally received it from my doctors this last year. It has made all the difference! Welcome!

[brenda07]

Isn't it amazing what a little support will do. I never knew how important it was to have that support from my doctors until I finally received it from my doctors this last year. It has made all the difference! Welcome!

I just received a letter in the mail on Saturday from my dr. saying she was leaving her practice to do something called MD at home, with a list of alternate drs, I could chose from. I broke down crying, I am so upset, she has been through everything with me, she has been my dr. for 14years, she is more than a dr., i consider her a friend, she's always been there when I've needed her, plus she is my children's dr. also, i was crushed my her news, now i have to find someone to fill her shoes and these days that won't be easy!!!!! Just one more thing to make me be depressed! UGH!!

[dlp252]

Aw Brenda, I'm so sorry...it's so darned hard to find that right doctor, so I know this is hard for you! I'm hoping that because she is recommending these, that perhaps one of them might be a good one!