I live in Portland, Oregon. Was hoping I could post my story and see what kind of feedback anyone can offer.
40 year old male construction worker. Reasonably healthy up until October of 2007. Transplant from Maine in May of 2005. Symptoms began after a viscious sinus infection (a first for me) in September. Upper epigastric pain and back pain of no known cause. Back pain was relieved when laying down, worsened with standing or being up. Doctor ordered upper GI barium swallow. Results showed duodenitis. Ordered Endoscopy and colonoscopy. Results were normal.
Began losing weight rapidly. All blood work came back negative for anything liver/kidney/pancreas..etc. Ordered small bowel follow through for abdominal pain and weight loss. Results were normal. Gluten intolerance tested negative by endoscopic biopsy and blood work.
Rapid heart beat with palpitations had me in the er getting a nuclear stress test with a follow up left side heart catheter when stress test showed 49%EF. Heart cath ruled out ischemia with minimal arterial plaque and good pressures. Heart fine.
Furthering weight loss, abdominal/back/chest pain had brought on ct scans of chest/abdomen and a EUS to rule out pancreatic diseases. All tests came back normal.
Enlarged lymph nodes in neck that were swelling and then receding in size (sometimes daily) forced a lymph node removal for biopsy. Lymh node ruled negative for malignancies.
Echocardiogram showed only mild mitral valve prolapse. CT angiogram showed normal structure. US of the neck showed enlarged lymph nodes but none of a malignant nature.
Negative blood cultures tests twice. Negative heavy metal poisoning test. All blood work has been normal (roughly 15 cbc's and several metabolic panels) except for 1 time I had a lowered hematocrit that resolved a week later. Normal ESR, C-Reactive, LDH, AST..etc.
Weight fell of until January and then nausea faded and appetite returned with a vengence. Gained 13 pounds after having lost 40 in 4 months while trying to maintain weight. Most abdominal pains resolved but still irritable noises.
Symptoms seem to be random and wax and wane. What was worse 2 months ago is now mild to gone and others have taken it's place. The most concerning one is the breathing trouble that started about 6 weeks ago and has yet to resolve. Had pulmonary function tests to rule out COPD and Asthma, they were normal too.
October- Mostly gastrointestinal with chest pains and excruciating back pain.
Novemeber- Blurred vision with sudden onset and sudden resolving. Lymph node enlargement on neck. Cold hands and poor circulation to arms. More chest pain.
December- More weight loss. Chest pain of stabbing nature. muscle weakness and severe fatigue. sometimes sever lightheadedness/dizzness. vertigo feeling with movement and trouble concentrating.
January- Heavier heart beat. Rapid heart rate. Heart pulsing in abdomen sometimes. Severe dizzyness and light headed. sharp stabbing type pain in armpit area. mild eye twitching and leg muscle twitching.
February- More palpitations. Weight gain rapidly and increased appetite. breathing trouble like I have to work to breath sometimes. muscle twitches in neck, arms, legs, and torso. chronically tired but sleep poorly. noise and light sensitivity. tons of eye floaters. more chest pains, and burning type stabbing pains in armpits and near groin.
Doctor asked me about bug bites last week. I told him of a time about 3 years ago I had a bite that I thought was a spider reaction. Large red with whitish center reaction and actually laid me out sicker than a dog for a couple of days with high fever and extreme body pain. never thought about it maybe being a tick. this occurred in Maine.
Tested immediately with ELISA and came back serum positive. Doc orders 4 weeks 100mg doxy twice a day.
Questions for any that can help with some feedback.
Could a bite from 3.5 years ago that resolved surface later with all of this and be lyme?
Did anyone here who has been accurately diagnosed have much digestive issues as well as abdominal pain?
Assuming I am active with Lyme is the breathing trouble a poor prognonsis or does anyone here have a similar situation and it resolved?
As well if I am active with Lyme can I hope for any relief with the oral doxy or do I need much more thorough help?
Sorry to write such a long post, I thought the history may help some. For awhile there they called me anxiety ridden and wanted me on meds for it. It's a tough spot when you're a funcitoning, working, healthy father/husband one moment-and then a slowly deteriorating husk the next few months and the doctors decide because their tests show nothing you have anxiety.
Anyway, I feel for us all.
Posts: 14 | From Oregon | Registered: Feb 2008
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posted
This screams Lyme disease to me and YES, it is very common to have symptoms surface years after infection.
With a positive ELISA, the doctor should also have ordered a Western blot to confirm Lyme (refer to CDC if you need to)....although getting you started on treatment is definitely appropriate in the interim.
My concern would be that one month of doxy treatment may not be sufficient considering the duration and dissemination of the disease. I'm assuming you are on 200mg/day? Not likely enough. You also need to be evaluated for co-infections (i.e. erlichia and babesia).
Welcome....
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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I know a number of the symptoms do match up with Lyme. The weird thing is that with all of that plus the chorinc fatigue (sometimes I just want to sit or lay down wherever I am) I have not had any terrible joint pain. Excruciating back pain in my upper spine area and random sharp chest pains that come and go, but no real typical arthritis type.
I hear you on the co-infection thing. I talked to my doctor about an infectious disease referral but he wants to see how the abx go first. Portland is no place to have Lyme and I wish I was back in New england where I am sure treatment would be better.
Yes, it is 200mg a day of hydro-doxy. I asked for a western blot but I have not yet heard back on whether he is doing that or not.
Tell me......will the breathing trouble EVER resolve? That is the one symptom that bothers me the most. Worse when I lay down sometimes. And man I wish I could sleep for longer than 5 hours a night.
Thanks again for the welcome!
Posts: 14 | From Oregon | Registered: Feb 2008
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I read the guidelines at that site, and also the Advanced Topics in Lyme Disease by Burrascano. The problem is getting my doctor to take this as seriously as I am.
How do I go about being tested for co-infection? And if positive should that be treated first?
Posts: 14 | From Oregon | Registered: Feb 2008
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posted
The breathing trouble will only get resolved if you get treated for babesia. That and night sweats is my primary babesia symptom. I was also tested for asthma.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
The thing is, you won't get your doctor to take this as seriously as you do! You have to see an LLMD! I travel from Ohio to NY for treatment. It's unfortunate, but most of us have to travel to get our Lyme Disease properly treated.
All I could get treated for in my home state was Somatization Disorder.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
That was very concerning to me. Having a symptom of coinfection that seemed more sinister than the lyme itself.
Do you know of a specific test for Babesia? And can treatment for it coincide with the doxy treatment?
Posts: 14 | From Oregon | Registered: Feb 2008
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posted
I was able to find one in Seattle, but he takes no insurance and his rate is 400 bucks per hour. With this illness I am out of work now and relying heavily on insurance.
I posted in the doctor seeking section for anyone in Portland. Hopefully someone will know of one.
Posts: 14 | From Oregon | Registered: Feb 2008
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posted
They can be treated together, but it's not going to be easy. It will require an extended treatment.
I have been treating babesia along with Lyme for 13 months now! I treated bartonella along the line, too.
I'm doing much better, but it has required persistent, continual treatment.
Babesia testing is very unreliable. Mine was negative, but I was diagnosed clinically.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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tailz
Unregistered
posted
quote: Could a bite from 3.5 years ago that resolved surface later with all of this and be lyme?
Yes, if you have underlying microwave sickness.
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tailz
Unregistered
posted
I dropped to 88 lbs and was diagnosed with malnutrition because I was absorbing zero nutrition - still, everything was "normal". Yep. Normal malnutrition.
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bettyg
Unregistered
posted
quote:Originally posted by briquewest:
I was able to find one in Seattle, but he takes no insurance and his rate is 400 bucks per hour. With this illness I am out of work now and relying heavily on insurance.
I posted in the doctor seeking section for anyone in Portland. Hopefully someone will know of one.
WELCOME to the board; glad you found us, and THANKS FOR DETAILED HISTORY on yourself to help us eliminate things also.
before i forget it, you quoted $400; with our EXPENSIVE LYME disease, that is a bargain! east and west coasts are horrible ... so that is one thing in your favor! hard to believe right now but the more you get into this; you are faced with the unbelievable prices!!
i'm going to send you a private message of my lengthy newbie package of info plus and it has TREEPATROL'S ARCHIVE LINK of over 1000 good lyme info galore!!
pms can be found on left side under HELLO by flashing light and in my profile!
when you get my newbie package info, copy it to MS word or whatever wordprocessing program you/wife use. then do a search using EDIT, FIND, and type in
IGENEX hit enter key until you come to something talking in great detail about the testings of western blot igm and igg, cost is $190 PREPAY. be sure to read/print this off before you have this test done ok!!
you didn't mention having a SLEEP STUDY DONE FOR SLEEP APNEA! I would suggest this; many of us lymies have this and that is why you don't sleep well and wake up with AIR HUNGER ... gasping for air.
i'll stop by seeking dr. area after i take care of something for an iowan whose 14 yr. old niece is dying of an UNKNOWN/UNDIAGNOSED illness BEFORE i forget with my neuro lyme!
best wishes; we'll educate you but you have to READ, READ, READ .. this is COMPLEX.
before i forget, FRY LABS is cheaper and equivalent to IGENEX for CO-INFECTION TESTING!!
posted
I would agree with the other posts regarding babesia and breathing issues. There are a couple of different methods of testing for Babesia. I would suggest having a blood smear done AND an antibody test. There are certainly some labs/methods that are considered better than others but considering your current situation (i.e. finding a LLMD, insurance, time) maybe you can ask your PCP to order these tests.
Please note, however, a negative test does not mean you do not have babesia. I'm almost positive that a LLMD will treat you based on your symptoms, regardless of your test results.
Treatment for babesia USUALLY is azithromycin(zithromax) and Mepron. Most people take something else as well to help witht the Lyme treatment (e.g. you could continue on the doxy).
I'm currently on mepron, zithromax and minocycline.
You'll be an expert on all of this before you know it.....unfortunately, right?! Hang in there!!
Posts: 561 | From mass | Registered: Jul 2007
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hshbmom
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Hi brique,
The following article is a must read that explains the effects of Lyme disease on the digestive system:
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