posted
So I've been struggling with a handful of health problems for the past 3 years or so. I do not ever remember developing a bullseye rash or anything but I have been bitten by ticks once or twice. I got a blood test for lyme disease last Thursday and it came back negative but I still feel like my symptoms match up. I'm a 22 year old male btw.
First problems I noticed was some pain under my eyes and upper cheeks. It's like a burning tingling pain and the skin gets swollen and feels hot to me.
Next were my eye problems. I've developed incredibly dry eyes out of no where. My vision used to be 20/20 and now has gone way down. Super blurry vision, tons of floaters, super sensitive to light, flashes, dots, etc. Even when my eyes are not dry, my eyeballs will just plain hurt and are itchy/burn. My eyelids will feel hot to me too. I've developed terrible bags and dark circles under my eyes but I wasn't sure if this was due to the stress of dealing with all of this.
July 2014 I came down with Bell's Palsy randomly and I dealt with that for several weeks. At this time I got a blood test for lyme disease but my doctor never bothered to check the results because he decided to just treat me for bell's palsy. I have been looking into what those results were but again the recent test that I got came back negative.
In the past few months I've developed a pain in my forehead. The source of my pain is primarily on the right side of my forehead and the skin feels swollen like I have a small lump on my head. It's only slightly swollen though, to the point where people don't notice it if I point it out but I can definitely notice it. The pain is constant and does not go away. It's a dull pain and I feel a similar burning tingling feeling too. I've had an mri and was told my brain looks normal and I've had a ct scan and was told my sinuses look normal but still the pain is there.
I have also been experiencing excessive amounts of burping and nausea when I eat. At times I even get some acid reflux. Tums and other anti-acid don't do much. Again my doctor thinks this might also be from stress.
Back and knee pain is something I've been dealing with for about a year now. Sometimes I'll stretch and I'll experience extreme pain in my lower back, like I've pulled something, to the point where I can't move for a bit. Exercise has become too painful so I've stopped going to the gym because of this.
I've been dealing with some incredible depression because of the fact of how long I've been struggling with all this with still to this day no answers or diagnosis. There's tons of little things that have popped up but I wasn't sure were related. I've listed the main ones though. Any questions feel free to pm me or post here. Thanks.
Posts: 87 | From Massachusetts | Registered: Aug 2015
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posted
Yes, I'd say these symptoms sound like Lyme. The Bell's palsy is a dead give-away right there - very common for Lyme patients to have that. It's typical for symptoms to come and go and for testing to come back normal.
Basically, you need treatment. You can ask in Seeking a Doctor for referrals to Lyme-treating doctor - put the state(s) in your heading where you're willing to go.
We can also assist you in dealing with symptoms. We are all different in how we respond to any remedies and the trick is to find out what works for you.
For stopping Lyme eye symptoms, I drink mangosteen juice. It's an anti-inflammatory juice that scarfs up free radicals created by the Lyme inflammation. I like the Mango-Xan version, as it's the most tart. You can find it in health food stores and online.
Others will be along to address your concerns. You have come to the right place and we'll try to turn it around for you!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
So literally minutes after posting this I got a call from my doctors nurse saying that she was able to get the records of the blood test that I had back in July 2014 when I came down with bells palsy and that the blood test came back positive for lyme disease.
The joke is that my doctor never got me the results because he decided to just treat me for bells palsy and didn't think it was lyme. I saw him last thursday and the results of that test were still "pending" in his system.
I'm furious right now because I have suffered intensely over this past year alone and we already had a diagnosis. They told me that they are doing a secondary test on my blood now and we're going to wait for those results.
I'm from Massachusetts btw and I am very happy that I have found this site. I will give the mangosteen juice a try and see if that helps.
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posted
I'm arguing with the nurse to give me the antibiotics now regardless of what this secondary test shows and she is refusing!! I don't know what to do. She keeps trying to tell me that "you most likely don't have lyme disease"
Posts: 87 | From Massachusetts | Registered: Aug 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you want the name of a good lyme doctor who can see you in a few days, I can send it to you now. He is in the Washington, D.C. area.
You need to get to a doc who specializes in lyme disease, meaning that his practice is solely lyme disease, or nearly so. Then, there will be no more arguing with anybody over treatment.
This guy will do monthly telephone or Skype appointments after the first in-person appointment.
Or, contact all the lyme support groups in your state and surrounding states. See Support Groups on the left side of the page. Get a lot of input on who is good. Don't go to anyone without getting a lot of info on them and how they treat lyme and if they are curing people of lyme.
You can post for doctors names in our Seeking a Doctor forum. Then, those near you who are on this forum can give you names and hopefully patient input also.
The sooner you get away from your doctor, the sooner you will have peace. You won't get correct treatment until you get to a doc who specializes in lyme disease.
Just know this: many doctors treat lyme disease, but only a few know enough to get rid of it for a person. The doc is the key to getting rid of this disease. Can't emphasize that enough.
The treatment is complex and takes a while.
Many people go out of state for their treatment.
You have lyme and you must now educate yourself on this disease which is really a group of diseases. Read the Burrascano Guidelines to get your education. They are here:
Try to find a doctor who follows these guidelines.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires a combination of at least 2 different antibiotics simultaneously to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has(including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. If possible, you want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. He was the most successful lyme doctor on the planet. They came from every country in the world to be treated by him.
Also, just to let you know that what has happened to you is not unusual. Doctors in this country have been miseducated about lyme. They have been taught that it is RARE and EASILY cured. That is why they really don't believe you have lyme disease.
Meanwhile, the truth is that lyme is worse than an epidemic and it is DIFFICULT to cure.
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get good lyme treatment.
The lyme disease controversy is very sad. Because of it, I went TEN YEARS undiagnosed, going from doctor to doctor. I went to Johns Hopkins and they never thought of lyme. After 10 LONG years of being ill, I finally went to an endocrinologist who thought of lyme disease and tested me. I was positive.
So, you see, many of us on this board have suffered for many years due to the miseducation of our doctors regarding lyme disease.
This has been going on for at least 30 years and there is no end in sight even now.
Still, once I got to a doctor who followed the Burrascano lyme treatment protocol, I got well. You can get well also. So many lyme patients took 10 or more years to get their diagnosis. This is the tragedy of lyme disease. It is going on all over the world thanks to the Infectious Diseases Society of America (IDSA). They are the cause of your suffering and were the cause of mine.
Posts: 9931 | From Maryland | Registered: Dec 2007
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quote:Originally posted by AndyR: I'm arguing with the nurse to give me the antibiotics now regardless of what this secondary test shows and she is refusing!! I don't know what to do. She keeps trying to tell me that "you most likely don't have lyme disease"
-Ridiculous .. What part of POSITIVE do they not understand?
They are doing the Western Blot (secondary test) but a positive ELISA is proof enough.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Thank you very much for this info, I will be doing a lot of research on this. I will definitely be looking for a good doctor to go to now. I'm currently working full time so I'm not sure if I can make it to DC anytime soon but maybe I can find something closer to home for me. Lots of research needs to be done on this.
I'm sorry to hear about the suffering you went through but I can say that I know how bad it was and I feel for you. I'm glad that you have found treatment that works and I hope that I can find the same.
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quote:Originally posted by Lymetoo: -Ridiculous .. What part of POSITIVE do they not understand?
They are doing the Western Blot (secondary test) but a positive ELISA is proof enough.
That is exactly what they are doing. The nurse said that in July 2014 when I went to the hospital for bells palsy they took my blood and did two separate tests. One was positive and one was negative.
The one that was done last Thursday was also negative so they are trying to tell me that I'm fine because of this when this last year has been the worst year of my life.
But like I told her, I've tested positive once so I had it at one point and it's not so easy to get rid of from what I've heard.
It's ridiculous, I'm furious right now. If I had known that I tested positive last July I would be better by now or at least much better off than I've been feeling lately.
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posted
You are correct! TF is correct about Igenex testing .. the one they did for you was likely thru Quest or LabCorp. Not as sensitive.
Not many good LLMD's in MA.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You must get a copy of that positive test. This is very important.
You want that for your files. You show it to any doctor you go to for lyme treatment.
Go to the doctor's office and ask for a copy of it. For peace in your life, I suggest that be the last time you contact them for anything.
You will likely find that lyme doctors in your area have long waiting times. That is why I suggested this doc.
If you take the train, it is possible you could come to D.C. and go back home all in one day.
Once you do some research, you may then find that this is a great opportunity for you to get good treatment quickly. It is RARE that a person can be seen this quickly by a true lyme specialist.
There is no sense arguing with the doctors about lyme disease. Don't waste your time, energy, or emotions. It will get you nowhere.
Just go to someone who is an expert on this disease and talk only to them about it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
I know it's infuriating how you've been treated, but at least now you have a chance to get treatment and we all here will assist you in sorting it all out.
Btw, I went through similar - I had a positive Western Blot, then a rheumatologist sent out for an ELISA which came back negative and he tried to convince me that I was negative.
Only that didn't work since I had no more pain for the first time in 25 years due to being on antibiotics and I was herxing!
[ 08-11-2015, 09:36 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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quote:Originally posted by TF: You must get a copy of that positive test. This is very important.
You want that for your files. You show it to any doctor you go to for lyme treatment.
Go to the doctor's office and ask for a copy of it. For peace in your life, I suggest that be the last time you contact them for anything.
You will likely find that lyme doctors in your area have long waiting times. That is why I suggested this doc.
If you take the train, it is possible you could come to D.C. and go back home all in one day.
Definitely going to be doing this. The positive test was done at the ER I went to when I came down with Bells Palsy so I will be calling them directly to get a copy of the results of that test. I will also not be seeing this doctor again because I do not trust him after this mess. I've wasted so much time, energy, and money on seeing multiple specialists when we already had the answer over a year ago. My sister's coworker had lyme disease and is recommending me the LLMD she saw in MA. I think I'll try and find some other options too.
quote:Originally posted by Robin123: I know it's infuriating how you've been treated, but at least now you have a chance to get treatment and we all here will assist you in sorting it all out.
Btw, I went through similar - I had a positive Western Blot, then a rheumatologist sent out for an ELISA which came back negative and he tried to convince me that I was negative.
Only that didn't work since I had no more pain for the first time in 25 years due to being on antibiotics and I was herxing!
Right now I've been put on 2 weeks worth of doxycycline and if that western blot test comes back negative I've been told they will take me off that. I'm looking into finding an LLMD right now.
Posts: 87 | From Massachusetts | Registered: Aug 2015
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