I'm new here and am not sure where the best place for me to post would be. I got the link from a CFS message board suggesting that Lyme disease might be the source of my illness. I was hoping to share my story and ask for some insight, as I am in desperate need of some help/direction.
Here is my story. I'm 22 years old, and I started having health problems at 17. I was very healthy growing up, with few health problems, none of which were serious. When I was 17 I went on a trip to Europe, and came back with a severe case of Salmonella food poisoning. That is when my downfall began, although this could have been a coincidence.
Shortly after "recovering" from the Salmonella I started having digestive problems and IBS. This lead to episodes of severe stomach pain and vomiting. These problems have been much better lately.
I had my baby 11 months ago, and that is when more of my issues set sail. For the past 11 months I have been dealing with chronic fatigue, insomnia, headaches, some knee pain and restless leg syndrome, night sweats, and a host of other ailments. However, the two that bother me by far the most are brain fog and severe vision disturbances.
Every day I wake up to a long battle of vision problems from blurred vision, dizziness, light sensitivity, and disorientation. My eye sight was PERFECT a year ago. I often close one eye to read, or wear my glasses to make me feel better about the situation, although it doesn't help. I struggle to see throughout the day and have no idea what is causing this.
I had the following tests:
-An MRI to rule out MS, no lesions were detected
-A spinal tap to check for MS and I believe Lyme disease, nothing detected
-Blood work to test for Lyme, thyroid conditions, and a few other things--all came back normal
-A visual evoked potential test, came back abnormal in one eye, unexplained
I have been to two opthomologists, and was told that my eyes are very healthy, but my puils are dialating abnormally, leading to suggest a problem with my nervous system.
My questons are, could a spinal tap come back with a false negative for Lyme disease? I know blood work can be incorrect but I haven't found anything on accuracy of a spinal tap.
Do my symptoms sound like Lyme, or are they more likely CFS?
What should I do next, and what other tests can be done to rule out Lyme?
Does anyone else suffer from these visual problems? Can anyone suggest anything I can do to help?
Any advice is so greatly appreciated.
Thank you,
Sara
I'd post this one on Medical.
Lots of us on this site have eye/vision problems.
I had severe headaches and developed double vision and now have blurry vision which comes and goes. All due to Lyme.
You can search this site for a Lyme Literate Medical Doctor (LLMD) close to your area.
That's what I did and finally got a diagnosis and treatment.
I've been tested for lyme also but if you don't use a proper lab the results could be errorneous. Go to an LLMD.
I went to many 'specialists' and the Mayo twice and have had umpteen tests done to find out nothing. Also throw in 2 neuro-opthalmologists which didn't have a clue either.
Please save yourself alot of heartache, time and money and go to an LLMD.
Good luck!!!
Blood work, and especially spinal taps, frequently come out negative, even when people are very ill with lyme and the coinfections, known affectionately around here as the TBDs (tick-borne infections).
Lyme disease and the coinfections are CLINICAL DIAGNOSES. Many of us have had negative diagnoses from non-lyme literate doctors. To diagnose lyme disease properly, it is CRITICAL that you get a LLMD (Lyme literate doctor).
And conversely, if you don't have LD -- you still want to go to an LLMD to have it positively ruled out. And please, make sure it's a LLMD that comes with recommendations from Lymenet or other responsible groups. There are WAAY too many self-declared "lyme experts" (NOT) who Do Not Understand LD/TBDs.
The problems you describe fall well within the range of LD/TBD.
You can find a LLMD in Seeking a Doctor.
There is some wonderful information in the Links for New Members
Also Treepatrol's response at http://flash.lymenet.org/ubb/Forum1/HTML/029452.html , which lays out newcomer information very well, too.
Don't be overwhelmed! But do start reading, just a page at a time. Especially about the misdiagnosis of Lyme.
Good luck. For specifically medical questions, post in the Medical Questions forum. Many, many of us have been diagnosed with CFS, or RA, or Lupus, etc. etc.
No question is dumb....
[This message has been edited by minoucat (edited 23 November 2004).]
I'll email you re: neuro-opthamologist in Lancaster, PA.
Carol
Glad someone furnished you Tincup and Treepatrol's links.
I'm NOT a dr., but do feel you have lyme also.
You mentioned the eye sensitivity. Mine is extreme & I've misdx for 34 yrs. Dx 7-12-04.
I recommend you be retested for lyme w/WESTERN BLOT IGM & IGG tests by 1 of the following: Igenex, MDL, or Bowen. On the links given to you below, you can read about each.
IGX does NOT accept insurance; it's $180 out of pocket & paid at time you give blood. IGX tests all 16 bands. That's where I had mine done; didn't know of other 2.
MD accepts most health insurance.
Another thing for your eye sensitivity, I learned from the Marshall Protocol lyme board about NoIR, no infrared sunglasses that filter IR plus ultra violet out. In fact, my local eye wear store finally got a kit in w/8-10 frames/lenses last Friday. I hounded them for 4 months; took 2 months to arrive. If interested, go to their site: www.noir.com.
Good luck to you, and as suggested below, print off the links and check them off as you read them since we all have brain fog and can't remember what we have read and not read.
Betty G., Iowa
Glad someone furnished you Tincup and Treepatrol's links.
I'm NOT a dr., but do feel you have lyme also.
You mentioned the eye sensitivity. Mine is extreme & I've misdx for 34 yrs. Dx 7-12-04.
I recommend you be retested for lyme w/WESTERN BLOT IGM & IGG tests by 1 of the following: Igenex, MDL, or Bowen. On the links given to you below, you can read about each.
IGX does NOT accept insurance; it's $180 out of pocket & paid at time you give blood. IGX tests all 16 bands. That's where I had mine done; didn't know of other 2.
MD accepts most health insurance.
Another thing for your eye sensitivity, I learned from the Marshall Protocol lyme board about NoIR, no infrared sunglasses that filter IR plus ultra violet out.
In fact, my local eye wear store finally got a kit in w/8-10 frames/lenses last Friday. I hounded them for 4 months; took 2 months to arrivehttp://www.noir-medical.com/noir_amber.htm. If interested, go to their site:
Good luck to you, and as suggested below, print off the links and check them off as you read them since we all have brain fog and can't remember what we have read and not read. Betty G., Iowa
Then after it's posted on MQ; you can come back here and EDIT and right below your name, you can chose DELETE box, and it will be gone. Betty G., Iowa
Thank you so much for welcoming me and for all of your great suggestions. I finally feel hopeful again. I had stopped trying to get anything resolved after some unsuccessful trips to the neirologist and opthomologist. In fact, at my last opthomologist appointment I was told that I had been poked and prodded enough, that my eyes were healthy and it was time to get on with life. I'm sure you've all heard the same.
After several suggestions to get this lyme test, I am going to order it and I'm sure--positive or negative, it will be a step in the right direction!
Thank you all so much.
Also, about the special eye glasses, why do they help with this condition? I am going to do some reading on them when my sight is doing a little better, but I was just curious. I will also try to post this on the other board when I can figure out how.
Thanks again and happy Thanksgiving.
Sara
And again, I have to repeat -- LD/TBDs are a clinical diagnosis. The blood test is extremely helpful, but if it comes back negative, it is NOT conclusive that you don't have LD/TBDs. Just as a frinstance, my hubby tested negative on the PCR for babesia. But boy oh boy, did he ever respond to treatment.
Please do come back and tell us how you fare.
Any neurotoxin can cause any of the symptoms.Do a search on ciguatera to see about the fish thing..Also there is a website for the Dr in S. Md that specializes in neurotoxins..It is chronicneurotoxins.com
Either disease is the pitts, so good luck!! To remove any neurotoxin your need questran, welchol, etc.
I also highly recommend the neurologist opthomologist that Carol in Pa is probably sending info about.
[This message has been edited by lymemomtooo (edited 26 November 2004).]
Well looky here! GREAT JOB! I get so excited to see folks helping others who have been given a bogus diagnosis!
Keep up the good work! You are wonderful!
Sarabear...
Any relation to Smokey the Bear? Or boo-boo?
The eye doc Carol recommends... and Lyme mom 2 also suggested... may be the first stop for you.
I would go there first.. and see what they come up with before doing other things.
Hope what ever you have.. you find out what it is.. and you feel better soon.
------------------
If you get the choice to sit it out or dance...
Thanks again for the help. I really don't knwo what I have...I guess I'm just looking for suggestions on where I might go next, which I have been given, and am so thankful for. Don't worry, I'm not jumping the gun on the lyme thing, though I dot hink it is a possibility.
I didn't eat fish around the time of the onset of my illness as I was a vegetarian. I believe that I got Salmonella from a salad that I ate over seas, and did test positive for Salmonella. Are there other things (vegetables or vegetarian food) that could cause the neurotoxin problems? I will get that checked out as well.
Don't know how soon I'll make it back to an opthomologist, esp the one in PA, because I am a stay-at-home mother to an 11 month old. I am first waiting on the name of a LLMD here in Frederick from someone who works with them and has been emailing with me. I will first see him, and if nothing pans out there I will get to that doc in PA at any cost.
Thanks again,
Sara
The NoIR, no infrared sunglasses, are PLASTIC, do scrach, and do block out IR as well as UV from letting in vitamin D, the sun.
I like my big clunky ones; just got the darker 40% light for driving in sun yesterday. Gotta go, time's up today.
Best wishes on getting to eye specialist! Betty G., Iowa
[This message has been edited by bettyg (edited 29 November 2004).]
To save you time and money.. just thought the eye doc should be your first stop.
He WILL order ALL the right tests (automatically).. and then some.. which would eliminate so many things that could be causing this situation for you... not just Lyme.
In other words.. to prevent having 2 appointments.. and since your eyes MUST get the proper care first... this might be the better starting point.
If then.... a LLMD is needed.. you can go to one.
If you do it the other way.. the LLMD will probably make you go to the eye doc anyhow... so he can handle the eye thing.
Good luck!
Welcome to Lymenet. Vision problems are on my list too. I saw a specialist early on. They told me totally neurological.
My problems are more one sided. It was so obviouse that the pupil in my right eye was way larger than the one in my left. That has gotten better over time.
Now it comes and goes more not as constant.
I hope that you find all the answers you need get the help you are looking for.
I have been on lymenet three months and it is a wonderful place.
Hope you start feeling better soon.
Cindy
[This message has been edited by Softballmom (edited 29 November 2004).]
Thanks for your reply. I'm glad your vision has been doing better. It seems I don't have quite the same problems there, but I'm sure the impact it has on our lives has been similar. It is very hard to go from having perfect vision, to having vision so distorted it impacts many aspects of daily life.
TO everyone: I spoke with someone today who has had lyme for 30 years or so. He concurs that he thinks I have it. I, of course, need to be tested further, and to talk to a LLMD to be sure. He asked if my baby son or I have a rash on the back of our necks, near our hairline. We both have it. Has anyone heard of this rash related to Lyme before? We were told that the "rash" on the back of my baby's neck was a common birthmark by his pediatrician. It has been there since birth and I thought nothing of it. I had someone tak ea look at the back of mine today, and sure enough, I had something very similar but not as pronounced. Any thoughts?
Thanks so much,
Sara
Thanks,
Sara
If you have had this for a while, there is a possibility it was passed to your baby in utero. It does happen.
I agree that the Lancaster doc would be a good first stop. It isn't that far away, and if you aren't absolutely sure of the local doc someone mentioned to you, then this would get you started down the path of diagnosis.
Have you contacted the support groups in MD? See the support groups listing on this website (green menu box in upper left of this page, click on support groups line).
The other thing that occurs to me is that you might have gotten more than salmonella on your trip to Europe. Could have been bitten by a tick there and gotten European strains of borrelia, which might not show up positive on tests in the U.S.
In other words, you ate something bad, got salmonella, got over it, maybe. But if you also were bitten by a tick on same trip and got no treatment, could have gotten chronic case of Lyme (and possibly other tick borne germs).
Unfortunately, there is no law saying only one health problem allowed at a time! And it complicated your situation.
Just supposing here, don't actually know where you got Lyme, if you have it. But it seems like a good possibility.
[This message has been edited by lou (edited 30 November 2004).]
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
How to Search Courtesy of Danq
TC LymeNet Links for New Members
Newbie's Lingo
Lyme Disease Audio Network
Dr. Joseph J. Burrascano's Treatment Guidelines
CDC Website on Lyme Disease
International Lyme and Associated Disease Society
Lyme Disease Symptoms
Rashes
Co-IinfectionsThanx M
Rose's 15 Facts for Newcomers
Making the Most of Your LLMD Visit
Camp A and Camp B, The Lyme Disease Contoversy
2nd Version Camp A Camp B
Why You Can't Trust Medical Journals Anymore
Something to share with friends and family members But You LOOK Good!
Labs
MDL
Igenex Labs
Western Blot Info
FDA It is important that clinicians understand the limitations of these tests
Explaining Borreliosis (Lyme) Western Blot Tests
Explanation of Western Blot Bands
Igenex Labs on the Western Blot
Melissa Kaplan's Lyme Website Explains Western Blot
Dr. C Explains Western Blot
- Not present
+ Low
++ Medium
+++ High
+/- Equivocal = indeterminate (there, but not as intense as Low)
Drug Interactions and Other Drug Info
Drug Digest
American Medical Women's Association Tiscali Reference Encyclopedia
Herxing
What Is a Herxheimer Reaction?
What Is Herxing?
The Herxheimer Reaction
Check Diet Link Atkins Diet
Sexually Transmitted ???
Transmitted Through Sex?
Sex Question-Serious-Adult Content
Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections
Good Site Canadian Lyme Disease Association
FDA on Lyme Testing
Legal Help
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. )
See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH
Marnies......... Ten Points Regarding Mg and Lyme Disease
In a Nutshell P1
Wow. My kids had that when they were babies. I thought the same thing, some kind of birthmark. I haven't really looked for it in a long time with all the hair now it is not something I would just notice because it was faint when they were babies. Guess I will have to look.
Thanks for the awesome information. I was especially intrigued by the sexually transmitted Lyme section. I hope that isn't common!
I look forward to my first consultation with an LLMD next Monday. I'll keep everyone posted!
A million thank you's,
Sara
My symptoms got terrible about 8 months or so after my first child
Now I look back, I'd been ignoring alot of symptoms off and on for years (or thinking they were caused by something else)
I got the vision problems - floaters, spots, sensitive to indoor light/sunlight off and on, almost no night vision (I'm like a blind person for the first 10 mts or so), over extended visions (look at something, look away and it's still in my vision for minutes after and it really impairs my vision - worse at night and most worst looking at any light/sun), I had twitches for awhile but they went away, blurriness, problems focusing, etc, etc, etc
It's alot of fun, isn't it?
I also have terrible problems with my eyes, blurry, floaters, pain, etc. I've been to many non-LLMD eye doctors who tell me there's nothing wrong with my eyes. I am planning on calling the doc in Lancaster. Will be about a 3 hour drive for me.
Hope you can find some answers!
And Tincup---watch it with the bear jokes!
I haven't been to an LLMD yet, but I am going to one on Monday. I heard he is supposed to be okay, but I really will have to wait and see. He is located in the Baltimore area. If that doesn't pan out, I have an appointment in March for a different one who seems to be more reputable. He's in DC. If neither of those visits are successful I will go to Lancaster. I might even try that before the March appointment.
I hope I find something out! I emailed the Frederick contact for Lyme, listed on this site. He was VERY helpful.
I hope you all get some answers to your vision impairment.
Sara
Are you seeing Dr S in DC? I'm seeing him January after waiting like 3-4 months.
I live in Md, too.
I was seeing a dr in PA but that didn't pan out too well.
Yes, Dr. S is supposed to be the man. Was the PA doctor an LLMD neuro opthomologist? Some people on here told me to go see one of those in PA.
I hope Dr. S is everything I've been told he is and that he will provide us with some help! We'll be in touch--I'd like to hear how your appt. goes since it is a few months before mine.
Sara