posted
Please help me. I am so confused because there are so many posts and threads and I am exhausted just going through them all. Here is my story.
I've been perfectly fine until recently. I have a high ANA and that's it. No autoimmune diagnosis really.
Around August I was in Ohio at my sisters and we were out in the yard laying on the grass looking at a comet. She does have many deer in her backyard. I don't recall a tick bite.
Some time in August my friend's dog had ticks. I found one on me and I couldn't get it to detach itself.
Neither time did I see a bullseye rash.
In September I had a minor outpatient procedure and got very sick after. High fever, night sweats and intense head and facial pain. The right side of my face felt paralyzed and when I woke up in the morning my one eyebrow was always raised. The doctor perscibed Levaquin for 10 days because he didn't know what was wrong with me.
Then I got iritis in one eye. Was treated with steroid drops.
Since then I have had continual upper jaw pain and pain around my eye sockets and also still have the raised eyebrow. Also very dry eyes.
I don't have any other symptoms. Everything wrong with me is above the neck. Except I also have an abnormality in my kidney but the dr wants to wait 3 months to test again.
Does this sound like lyme disease? My western blot was positive for IgM but all of my CBC blood counts are normal. I heard you can get a positive western blot if you have high ANA.
How can I find out for sure if this is really Lyme disease, or a false positive. And being that I've had this for about 7 months what is the likely treatment?
Posts: 25 | From South Florida | Registered: Mar 2008
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
It sounds like Lyme to me. Especially with the positive Western Blot.
Facial paralysis or Bell's Palsy is a common symptom as are dry eyes. Night sweats are a symptom of the co-infection Babesiosis.
Have you seen a Lyme Dr?
Posts: 1761 | From USA | Registered: May 2006
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posted
There is no lyme doctor anywhere near me except for one person who is not on my insurance. I cannot travel to another location. My insurance is local and I cannot take time off from work. I am going to an infectious disease specialist and hoping they know something about lyme. I'm going to ask for 6 weeks of doxycycline and see what happens.
Posts: 25 | From South Florida | Registered: Mar 2008
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posted
A couple other things I forgot to mention. Silly me. I guess I have brain fog. The way I found out about the western blot is my opthamologist ordered it after noting that my iris was losing pigment. It's called iris atrophy. And I have some breast cysts and a lung mass and possible mass on the gallbladder. All benign. Are cysts related to lyme? What about the eye thing? Would be nice to have one reason for all these things. Nice, that is, if it can be treated.
Posts: 25 | From South Florida | Registered: Mar 2008
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posted
Marlap, Welcome and sorry you have to be here as well.
You need a referral to a real Lyme Literate Dr. who can help you with the facial paralysis. You can put a request into the Seeking a Dr Forum here on LymeNet or
posted
Thanks but Michigan is too far. I live in Florida. I think I got lyme when I was visiting Ohio.
Posts: 25 | From South Florida | Registered: Mar 2008
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bettyg
Unregistered
posted
hi marla, be sure to click on the link that MEG posted; all of florida's support groups and try this too....
People seeking doctors in certain states might be able to get help from their state online information and support group. Over 1500 people belong to these state groups. Many of the groups are small but quite a few have 20 or more people on them.
Type your state name and lyme as one word, e.g. newyorklyme
For SC, SD, ND and WY, put a hyphen between the statename and lyme, e.g. northdakota-lyme
The groups are moderated so you have to apply, and we don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *****************
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Marlap,
Your symptoms could be Lyme Disease. Since you have a positive Western Blot you need look no further for a dx, you have Lyme if you have a positive test.
Most of us have normal CBC's, or have had them many times, even if not at the moment.
Most Infectious Disease doctors are not worth the time spent going to see them. They do not understand Lyme, let alone how to treat it properly.
I would suggest that you go to the Seeking a Doctor Forum on this site and post that you are looking for a doctor. I predict that to find a good LLMD you will have to leave Florida.
Even if you don't think you can afford the time off, you really can't afford not to take it.
I am no longer able to work. Many others here are in the same boat.
Getting the correct treatment, promptly is of the utmost importance to your future health. Many here travel quite a ways to get good treatment.
Can you afford not to work at all? Not trying to scare you, but it's just something to think about.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
After 6 months of being too sick to work, I finally started feeling better and got a job with great benefits. I am not about to quit that job to go running around trying to find a LLMD. I'm going to start with someone local who starts me on antibiotics. To those of you who travel to another city and state, I am curious, do you travel there several times a week for IV treatment, stay in a hotel, etc for months at a time? I do not have the financial ability to do that. Its not that simple to just go to someone that is not in your area. I wish people would quit recommending that to new people, its just creating a lot of hysteria.
Posts: 25 | From South Florida | Registered: Mar 2008
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You are correct that a high ANA count COULD cause a false CDC positive WB, particularly if only bands 23, 39 and 41 were evaluated..I'm not sure which bands you had positive. One thing I would suggest is having your western blot repeated at Igenex laboratories because they look for more antibody bands that are associated with Lyme....if other bands are present, this would help to determine whether the test results are valid or not.
I agree with others here that you need to get to a Lyme-literate doctor who understands the disease and testing. The testing really is not to be relied upon for a diagnosis but instead is just part of the diagnostic puzzle. You should also be evaluated for co-infections as well.
Based on your myriad of symptoms, your exposure to ticks, timing of getting sick, I believe Lyme is certainly worth your time to explore further.
Just my 2 cents.....let us know how things go!
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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posted
I am not about to quit that job to go running around trying to find a LLMD.
Your choice.
I'm going to start with someone local who starts me on antibiotics.
That would be great IF you can find someone to give you 400mg a day for 6 wks. Good luck!
To those of you who travel to another city and state, I am curious, do you travel there several times a week for IV treatment, stay in a hotel, etc for months at a time?
Most who are on IV, infuse at home. Most LLMD"s only require visits every few months, once a month if you're on IV.
I wish people would quit recommending that to new people, its just creating a lot of hysteria.
Hysteria??? Do you know how hysterical you're going to be when you realize this disease will destroy your life, piece by piece?
Good luck.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Hey marlap, the situation with LD IS incredibly frustrating. And unbelievable, too. But, a couple of suggestions:
-When I went through my diagnostic process, often it took me weeks if not months to get an appt with the next specialist in line. Of course you can try an ID doc or your own PCP, or both, but why don't you also get an appt with an LLMD a little further out in time? Make it for a Sat so you don't have to work, and also so that you have time to drive a few hours if you need to. The worst would be to take quite a bit of time, realize you are not satisfied with your ID doc or PCP, and then have to wait a few more months for an LLMD. If it is Lyme (and your test says so!), the sooner the treatment, the better your chances for a full and timely recovery. It is your health, so what do you have to lose? It's worth your investment of time, effort, and money to get this right. Because if you get it wrong, it is so, so bad, marlap. No reason for you to go through that.
-My initial set of symptoms - for a little over a year! - were ALL also 'above the neck' as you phrased it so well. Just about all neuro for me. So yes, it can present initially that way.
-I wouldn't get too sidetracked in all of the controversy surrounding Lyme out there. See the LLMD and go from there. You'd do that if it was any other confirmed condition - wouldn't you? Don't get distracted by the static. Get INFORMED, then make up your mind.
I wish you the best.
otm
Posts: 314 | From east coast | Registered: Oct 2007
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You are correct that a high ANA count COULD cause a false CDC positive WB, particularly if only bands 23, 39 and 41 were evaluated..I'm not sure which bands you had positive. One thing I would suggest is having your western blot repeated at Igenex laboratories because they look for more antibody bands that are associated with Lyme....if other bands are present, this would help to determine whether the test results are valid or not.
Interesting you mentioned this. I just got my lab results in the mail. The P41 IgG is present abnormal, as is the p41, p39 and p23 IgM. Everything else is negative.
Posts: 25 | From South Florida | Registered: Mar 2008
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posted
No worries....just giving you a reality check.
Band 39 means you have Lyme. Period.
Keep reading!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
If you can't afford to travel now to see someone to properly treat you, then you really won't be able to afford it once you are too sick to work. Sorry to be so blunt, but this does not go away on it's own and won't go away without a specialist who knows how to treat it.
I travel from Ohio to NY for treatment. I had it for a lot longer than you prior to treatment, but was still able to be treated with only orals.
If I had needed IV's I would have needed to find a local doctor willing to work with my LLMD.
I have to go to NY three times per year and I have a phone consultation monthly. I have blood work done locally at a walk-in clinic monthly.
Seeing an out of state doctor is not easy, but it's not as bad as you think.
I paid out of pocket for my doctor and travels, but my insurance covered my meds.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Great, can you send me a private email of where to go? Let's not keep it a secret.
Posts: 25 | From South Florida | Registered: Mar 2008
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