Topic: Prior to Lyme- what other diseases- Need 100 answers- FIVE more to go!
lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
I already posted my list, TC, but wanted to add:
I presented to my PCP in Oct 2000 with a bullseye rash. It had started out about the size of a quarter and by the time I went to his office 2 weeks later, it was about 5" across.
The PCP noted that I did not see a tick. But, he actually ordered the Elisa and WB (from Quest). Of course, they were both negative.
Negative tests = no lyme = no treatment. Lucky me!
When my body finally crashed in Oct. 2006, the PCP told me that the only abnormality that he could see was that my B-12 levels were on the low side. So the cause of my over-exaggerated symptoms was probably due to my body being overly sensitive to lower B-12 levels.
Shesh . . .
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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posted
Migraines Vestibular Neurinitis Otosclerosis Mononucleousis Chronic Fatigue Environmental Allergies Depression Diverticulitis Anxiety Get this...weak knees Whiplash residual Syndrome X Food Sensitivities Oh, and my favorite: "Could be MS or Cancer"
Oi, Wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Son:
tick bite, age 5
trouble getting classwork done, age 7
panic attacks, age 10
depression and dysgraphia, age 11
depression and oppositional defiant disorder, age 12
+ for Lyme, age 13
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Depression
Mental Disorders
MS
Making it up
HellifIKnow-
and Most often you are Waisting My Time-
Finally I figured it out before it killed me- --I was LUCKY --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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I have a letter signed by my old infections disease doctor in Tulsa stating that there was no possibility that lyme could continue after my 30 days of treatment.
Posts: 183 | From Texas | Registered: Nov 2007
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daise
Unregistered
posted
Since puberty: Signs and symptoms of bartonella but no diagnosis(insomnia, soles of feet red with pins and needles, and burning.)
Starting at age 52: Stroke (misdiagnosed, actually Bell's palsy) Severe hypothyroidism Bone infarct in right leg PCOS Myofascial trigger points Neck out of alignment with spine at C1 and C2 Fibromyalgia / chronic fatigue Menopause (false!) Depression (no antidepressant) Lyme, bart and babs
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posted
RA Lupus Possible MS Possible Cancer Poor eating and lifestyle choices Depression Crohn's Disease IBS / ulcer
It has to be one of these because THERE IS NO SUCH THING AS LYMES!!!!!
(Ha. LOL! we know that's false!!! And don't you love the addition of the "s" on the end of Lyme????)
Posts: 26 | From Tuscaloosa, AL | Registered: Aug 2007
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posted
was told I have panic attacks then possible MS possible lupus possible RA then was told I had fibromyalgia the GAD
Posts: 229 | From front royal, VA | Registered: Jun 2008
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posted
Dehydration Malnutrition Otosclerosis Fibromyalgia Multiple Sclerosis Dermatamytamosis Stress "Fever of Unknown Origin" Must be Lupus Hypoglycemia TMJ Trigeminal Neuralgia Asthma COPD Costochondritis GERD Irritable Bowel Syndrome Spastic colon Anorexia Nervosa Ocular migranes Herniated disc in neck "Must be HIV" Cancer "somewhere"
I have been told I have ALL of these....but of course there IS no such thing as CHRONIC lyme....you just have EVERYTHING ELSE under the sun. And I am sure I forgot even more of them.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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posted
I'm not exactly sure when I contracted Lyme---I spent all my summers growing up either playing or working on Fire Island, NY (the tick capital of the world!) But I didn't pursue any diagnoses until I was a young adult, so I'll list those:
fibromyalgia chronic fatigue syndrome costochondritis sjogren's syndrome ankylosing spondylitis pleurisy connective tissue disorder, tendonitis ADD anxiety disorder sleep disorder restless legs syndrome IBS GERD TMJ inguinal hernia hiatal hernia chronic sinusitis environmental allergies chemical sensitivities vertigo arrythmia/mitral valve prolapse autonomic dysfunction uterine fibroids migraines degenerative disc disease stomach ulcers vitamin D deficiency "severe neck sprain" (although I had no injury to neck--just couldn't move it--excrutiating pain) infertility (but seven years of experimental treatments and surgeries paid off--3 kids!!)
I had to laugh when I looked at my list. I sound like a walking disaster. That's one of the weird things about lyme----everyone (including my llmd) always tells me..."but you LOOK so good". Maybe if we looked a little worse, people would take us more seriously!
Posts: 345 | From East Coast | Registered: Apr 2008
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posted
I always figured if I had turned green then I would have been diagnosed, treated and on the road to wellness in no time at all. Unfortunately I always look so healthy!
-------------------- Get our free Lyme Aware poster by writing [email protected] Posts: 8 | From British Columbia, Canada | Registered: May 2007
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Fibromyalgia - the main label I got. FM was thought to be possibly a post-viral syndrome. I had had a lot of herpes infections prior to FM, so I accepted that explanation as to what had messed up my body.
Myofascial pain syndrome
Back injury
Poor posture
Costochondroitis
Chronic pain syndrome
Depression
Stress
Anxiety
Undetermined amount of functional overlay (meaning I was getting something out of being not well)
Bad relationship with family
TMJ
Pituitary tumor/hormone disorder
Candida
Chemical sensitivity
[ 23. June 2008, 09:05 AM: Message edited by: Robin123 ]
Posts: 13101 | From San Francisco | Registered: May 2006
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posted
I do have many of these either in addition to or as a result of the lyme, but they were offered as stand-alone dxs for all my symptoms at the time
And the kicker - if I only lived a "healthy" lifestyle (proper diet, supplements, exercise, sunshine), I'd get better.
Did that for close to a year and got worse. Go figure.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Lupus
Post Traumatic Stress Disorder
Congestive Heart Disease
Generalized panic/anxiety disorder
"It's all in your head" diagnosis
Kidney failure
Fibromyalgia
Pre-Diabetes
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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1Bitten2XShy
Unregistered
posted
I had many, but my 2 "favorites" are:
PCP = You just need to pray more and handed me a religous medallion of his.
PCP = When he figured prayer was not working, he told me I had Leukemia!
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I probably left off another 10 or so but because of the fog I am unable to think clearly.
Posts: 90 | From Knoxville, TN | Registered: Jun 2008
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posted
Posting for my husband who contracted lyme in 1990 while visiting in Connecticut. We live in NC though so all physicians seen were from NC, with the exception of a week at Mayo Clinic which resulted in no diagnosis, more of a "go home and stop faking" type message.
In 2002, 11 year old daughter found an engorged deer tick on her while back in Conn. and tested CDC positive for Lyme. For about three years she kept saying, "Daddy, you have Lyme!" At her next LLMD visit, he made an appointment with her doctor. My husband has never had a positive Lyme test but has been treated on a clinical diagnosis since 2005.
In "fairness" I do have to say that the possibility of him having Lyme was considered by many specialists he saw and he was given the standard Lyme tests each time. They just were ignorant about looking outside of the "party line". I am seeing a slow but encouraging attitude regarding the possibility of Lyme disease in the absence of positive testing among NC physicians in the past year year.
Every little bit of knowledge is better than where we were four years ago when my daughter's pediatrician called our home at 9:30 at night to warn us that her IDSA buddy in Winston Salem told her it was her "professional responsibility" to let us know that the care our daughter was receiving from her NC LLMD "amounted to quackery"! Progress is slow, but it is progress.
Here is my husband's partial list, I can't possibly remember them all:
Chronic fatigue Possible lupus (often considered) RA Sleep disorder deviated septum causing sleep disorder which was causing all the other symptoms surgery for deviated septum which would cure sleep disorder which would relieve all the other symptoms (not) depression cellulitis-several times chronic sinusitis food intolerances allergies cytomeglovirus (or something like that, sounded ominous) fibromyalgia hypochondria/malingering "we've never seen anyone get as many strange infections as you!"
Posts: 25 | From NC | Registered: Jul 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Labels such as MS, Myasthenia Gravis, AL's, Parkinson's, Lupus, Valley Fever, etc were suggested but then ruled out for the most part.
EBV but also had doctor's say that they thought after a certain age everyone tested positive for EBV.
I guess. I did not go back to UCSF or Samsun clinic to get their final dx..ran out of insurance.
Knew enough then to know that when it comes to lyme disease many of the doctor's don't have a clue.
A couple of local primary docs suggested fibro, stress from work, CFS, see a shrink
Saw a pyschiatrist...he talked with me for an hour.
Said symptoms were medical not pyschological and to find a good MD>
Saw a person who specialized in fibro...said he did not know what I had but it was not fibro and to get back to him when I found out as he would like to know.
Had doctor's also who did not believe in fibro or CFS.
Insurance got in the way big time of getting a dx as most docs needed to stay within the insurance box for testing and sending me to specialists or not....mostly not.
If some of those bizarre symptoms I had that came and went for years before I was too sick to work or do household chores were lyme...
I was told at the time..
stress
silent migraines when I could not see or hear..it would come and go
inner ear infection when the classroom would spin around
bad marriage....need to get out of it (they were right, but medical needed to be looked at too.
Mycoplasma was mentioned by one doc but she would not do what it took to get approval from insurance to get the testing.
She also would not send me to a doc at Stanford that had been recommended because she would not get her quarterly bonus if she did so.
I found many of the primary doctor's in the small town I lived in would wait 3 months before telling me insurance had denied something.
Then, when I called insurance to see what needed to be done to get it through they would tell me the doctor's office never asked.
I started catching on after about the 4th primary doctor...yep...lyme brain ya know and being naive about the medical field..thinking they were there to do all they could to find out what was wrong and help me get my health back.
Silly me.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
TMJ torn rotator cuff mystery knee injury gout osteo arthritis arthralgias sinusitus rheumatoid arthritis
Posts: 69 | From So Cal | Registered: Jun 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Holy COW again!!! This is insane!!!
Why don't they think Lyme FIRST?
Grrrrrrrrrrrr....
Anyhow... you all are wonderful to post and share. I will not tally up yet.. as I figured we need at least 120 posts here to make 100.. as some have posted 2 or more times.. like me!
So keep them coming and know that I appreciate each and every response!
posted
These are diagnoses I've received over the past eight years. I have other diagnoses from years prior to 2000 but am too tired today to try and catalogue them all.
Some of the diagnoses I've gotten have, indeed, been valid in that I now know that they are secondary complications and/or health conditions resultant from my Lyme and Co-Infections.
I've had Lyme a long time. I was re-infected in 2005 by the bite of a sandfly and that's when my Lyme and new symptoms of co-infections reared their ugly heads to the point where I simply could not deny my obvious decline.
Diagnoses Since 2000:
Kidney Stone
Systemic Candidiasis-Candida Related Complex
Late Stage Adrenal Fatigue/Exhaustion
Estrogen Dominance and other hormonal deficiencies (i.e., very low DHEA, very low pregnenolone and cortisol)
Irritable Bowel Syndrome and Leaky Gut(also two bad bowel bacterial infections- citrobacter freundii and C. Difficile which appeared before my Lyme diagnosis and Lyme Treatment)
I've had 5 surgeries in the past 7 years (e.g., kidney stone removal, D&C's, pelvic laparoscopic surgery - nothing found from this surgery - my pelvic pain was a direct result/symptom of Lyme and Co-Infections, etc.)
Loads of Gyn issues and problems (i.e., uterine fibroids, uterine cysts, recurrent infections, ovarian cysts, etc.)
Lupus
Depression
Recurrent upper respiratory infections (ear infections and sinusitis)
Allergies
Whiplash (was told that my neck pain and stiffness was whiplash as a result of my choking-type frequent cough -- the cough and neck issue was Lyme!)
Multiple vitamin and mineral deficiencies
And was told by the family doctor (internal med doc) that "Obviously you are infected with a bacterial infection of unknown origin."
Grief (Yep. A doc said my symptoms were probably caused by grief)
Of course, the above doesn't even include all of my symptoms. Were I to include them, I'd end up posting a tome.
If I can think of anything else, I'll revise this.
Hope this helps, TC.
Fuzz
Posts: 503 | From Maryland | Registered: Oct 2007
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posted
OH Forgot to Add The Main One HYPOCHONDRIA !!!!!!!!!
Posts: 115 | From warwick, new york | Registered: Mar 2008
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I don't think I have replied to this, so here goes! Some of these were for real, but I now see are related to Lyme, compromised immune system, etc.
Warning, since I've been ill for over 40 years, this is long.
In OK
Severe headaches in junior high- psychosomatic
recurring strep throat in high school - this was for real, but I now see was due to my immune system being compromised
In college, no dx, but had only one all-nighter. Felt so bad after I swore never again!
In KS, no dx, but here's what occurred:
1974 - Had first Rubella vaccination because I was working with young children, never had rubella, and knew we wanted to start a family in a year or two.
Back to OK
1975 - at first ob-gyn appt. with first pregnancy - no rubella immunity. Hmmmm.
During first three months of pregnancy, had what I thought was morning sickness , but I now realize was dysautonomia. My BP at appointments was always 90/60 and I felt better when lying down.
Looking back through old photos, I noticed spent a LOT of time lying down, pregnant or not!
1976 - after birth of first child, received second rubella vaccination.
Try sauna for first time. Can't breathe, so leave.
In VA
1978, first visit to ob-gyn with second pregnancy - no rubella immunity.
This time "morning sickness" lasted five months!
1979 - third rubella vaccination
1981 -
third pregnancy, no rubella immunity - doc says, "maybe you have immunity, just not enough to show positive on the titer." Ah...intelligent doc! Still love him, but he's about to retire.
"Morning sickness" was worse than ever. Doc's response (the guy I love) -"It's because you are middle-aged." I had just turned 30.
Mid-80's
Unable to drink caffeine after 2 PM, or cannot sleep at night.
Notice I have less energy than friends with kids when they are able to get up and run after their kids, and I simply sit and call to them.
Need naps on the weekends
New dx: multi-nodular goiter I decide this is the reason I fall asleep after teaching afternoon preschool, am tired on weekends, have low energy.
Realize I cannot take antihistamines during day because they knock me out -my dx now - drug sensitivity.
1989 - return to work full-time, first time since 1975, pre-pregnancy
Can't do anything else except work, care for kids, drive to activities, try to keep up with house. Feeling stressed
See endocrinologist - tells me I need to lose weight (duh!). I tell him I am stressed out from work, home, eat due to stress. His reply, "You need to learn to deal with it." Huh? How? No clue!
1990's
Working 30 minutes from home. Exhausted when I return. Sometimes have trouble staying awake on drive home.
Energy levels are low.
Frequent sinus infections lasting minimum of six week, every fall and spring. Sometimes last longer. Duck rolls eyes when I go back after first round of abx.
Every summer, after school ends, I am exhausted and sleep for two weeks. Hubby says this is not normal, wants me to go to doctor.
Ducks says, my body is just adjusting to the different activity levels.
Hubby traveling a lot. I am exhausted and/or sick when he returns. He claims I am "faking it."
Hubby returns from month-long trip to Russia. I have severe strep, which duck's office tells me is normal not to feel better after 4 days on abx.
Throat feels better, but I have missed 3 days of school, unable to cook full Thanksgiving dinner.
Week later develop cough. After it doesn't resolve I decide to go to duck to see if it's bronchitis. It's pneumonia! When doesn't resolve duck rolls eyes , again.
Sends me to get chest x-ray. Surprise! It's still pneumonia!
Miss three weeks of school and rest during winter break. Finally resolved after third round of abx.
January 1996, during huge blizzard, hubby shovels snow (first clue there's something wrong!), finds neighbor to take him to subway so he can go to NYC for pre-planned business trip.
Calls me from train and tells me there is a letter on his desk for me. Instinct tells me not to open until the next morning.
Letters says he's leaving me. I'm stuck at home with three kids (oldest home from college), can't get out, devastated.
Begin psychotherapy to deal with divorce. Begin having neck and shoulder pain, headaches. Therapist says those are all signs of depression , makes sense since I am going through major trauma.
Duck give me rx for Prozac. As summer progresses I am feeling worse and worse. Increase dosage, still not helping.
Duck sends me to psychiatrist, who changes meds, and gives me something to help me sleep.
Going through divorce, getting house ready to sell with no help, moving out, I end up with torn meniscus.
Surgery six days before school starts, but orthopedist assures me I will be able to start school. Takes me longer to heal than expected.
By end of September I am exhausted, feeling what I have been told is "depression." After discussion with therapist decide to check myself into mental hospital .
Spend two weeks there, feeling worse when I leave than when I went in. Use up all sick leave and take one month of unpaid leave.
Still not feeling well. Wake up in AM, eat breakfast and need to go back to bed. Psych duck says that's normal, I have been through a lot and it will take time to recover.
Return to work part-time in mid-Nov. full-time in December. Live for weekends and holidays, so I can sleep.
Therapist begins to suggest that this appears to be more than just depression, perhaps something physical.
Go to duck who runs basic tests and pronounces me to be fine.
Slowly improve, still have difficulty sleeping, sensitive to stimulants and caffeine. Live with Diet Coke in my hand at school. Only way I was able to remain at work for the last few years.
1999 - endo tells me I am pre-diabetic over the phone, sends me to diabetes educator who says there is no such thing, I am diabetic.
January 2001, go to gyn due to heavy periods. He asks for all recent test results, so I have them faxed to him. Tells me I am hyperthyroid. Endo never called to tell me this.
Runs other tests and tells me my night sweats and insomnia are NOT due to menopause , no longer hyperthyroid, wants me to follow-up with endo for further testing.
Go for further testing, but falls through the cracks.
Begin to have increased neck, back, and shoulder pain. Muscles can't relax. Start getting therapeutic massages, which help temporarily, but can't even stay relaxed through entire massage.
Friend tells me my back is like a rock. Another suggests I see her chiro. He does x-rays and pronounces my problem is scoliosis.
I am thrilled because I think I know what is wrong with me. I look in mirror and can clearly see that my neck is completely out of alignment. After a few months of treatments I decide this is not helping and stop.
Feeling worse and worse, what I had always associated with "depression." Go back to psych doc and he tells me there is only one anti-depressant I haven't tried ( wrong!) and puts me on Effexor.
I start on it and begin to suffer from severe anxiety. Affects my ability to teach. Go into tears over nothing. Begin having panic attacks.
Psych doc repeats there is nothing else he can put me on for depression, the anxiety can't be cause by the Effexor (I later checked and he was wrong).
Puts me on Buspar for anxiety. Gives me sample pack and rx to fill when I finish the pack. I fill rx and begin taking the dose on the rx.
Begin to feel much worse. All symptoms seem to be worse. I can barely function at school. After a few days I looked at the sample pack, which I just happened to save, and noticed that the increase in dosage from the pack to the rx seemed way too much.
I try calling psych doc, but his voice mail is full. Call pharmacy and ask about dosage level. Tell me that it is twice as much as normal high dose, but sometimes docs write for more.
Check their files to make sure they did not make an error and tell me they have the written script and the meds I have are what was written. Suggest I call doc. Finally get through to voicemail and leave message.
Stop at pharmacy to get photocopy of script so I can have info when I speak to doc. Finally connect around 10 PM. He proceeds to tell me it is a pharmacy error.
He would never have written it for that much. I tell him I have the script and that is what it says. Then he tells me I must have misunderstood what it meant.
Tells me to just use the pills I have to take the right dosage. I tell him I don't know how to make that dosage from the pills I have. They will not divide that way. They are scored, but not for dosage he wants me to take.
I am in tears and he keeps telling me to calm down. Easier said than done! I try to explain the dosages on the pills and how I can't divide them like he says.
Then he tells me to take three times day instead of two. How was I supposed to figure that one out?!
That summer sell my house and my mom's so we can move in together. She was 90. In addition, son comes home in psychotic state. Hospitalized twice, dx'd bipolar disorder.
In the midst of moving I discover a large lump in one breast. This is not the first time I've had this. Turns out to be cyst.
Move, go back to work next day. After three weeks I take day off due to exhaustion and medical appointment. Decide I will stay home rest of week because I am feeling worse, rather than better.
Cannot walk dog more than a very short distance. Used to walk half mile or more.
Dx'd with low WBC count. Develop infection in toe and since it rapidly moves up my foot I go to ER. They treat with IV Cipro. When done I am so dizzy I can't stand up without holding on to walls.
Tell me it's because of low blood sugar (it's 4 AM, so I am too tired to think) and give me OJ to drink. I get up to leave and still cannot walk without holding on to walls. Now realize this was herx.
After two days on Cipro I called to ask for different abx. When I was running errands I felt so bad after standing in line that I began to get dizzy, Always felt better when I got in my car. Strangers looked at me and were concerned.
I continue to feel worse and worse and call in sick again at school. I initiate the STD process. At the time the only dx I have is depression , from a new psych doc I am seeing.
As I watch my health continue to get worse and am unable to even figure out what is wrong with me my therapist suggests that it appears I have what she has recently been dx'd with, CFS and FM.
She gives me the name of her doc, but he is out of my network, so I try to see a rheumatologist others have recommended to me. He was a disaster. Told me he didn't believe in CFS and IF I had FM there was nothing he could do for me! I left in tears.
Went home and got the number of the other doc and made an appointment. Couldn't get in until December, but at least I had hope.
Meanwhile I could only sit up for a few minutes without becoming totally exhausted and needing to lie down and sleep.
Often I threw my legs over the back of the sofa, where I spent my days, because it helped me feel better.
Being single, I still needed to drive, at least sometimes. I did get rides to appointments. But when I drove I put my feet up on the dashboard at stoplights.
Finally at my appointment I was dx'd with "profound dysautonomia," CFS, and FM. The first thing he began to work on was my dysautonomia.
By January I was feeling a lot better. I figured that if I continue to improve like this I would be able to return to work part-time in March and full-time in the fall.
I did return n March, but by May it was obvious that I couldn't keep up that pace. I talked to my doc about filing for disability and he was totally supportive.
Over the years I posted on a few message boards. The one I frequented most had a lot of people who had originally been dx'd with CFS and/or FM now being dx'd with Lyme. I began to explore Lyme and finally asked my doc to test me through Igenex.
He spouted IDSA nonsense and printed out a copy of some report about Lyme, obviously from IDSA.
Later I tried going to a doctor I was told was a LLMD. He wasn't, and ran and ELISA, which was negative, so that as the end of that. I didn't know where else to turn.
Then, over a year after my original request my doc asked me if I had been tested for Lyme. I told hm I had asked him to do it, but he didn't do Igenex. He said he was now running Igenex testing. He was becoming Lyme Literate.
He did the testing, and while mine were negative overall, I did have a few ind bands that were significant. Based on my history he began treating me.
I finally had a correct dx of Lyme Disease, and Babesia WA-1. I also herxed on bart treatment, so believe I also have that. and after a few months began to feel better. That was over two years ago.
I've been ill for over 40 years, so I am not expecting miracles, but do believe I can get better than I am at this point.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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-------------------- ...~*Just keep swimming, Just keep swimming*~... Posts: 120 | From New Jersey | Registered: May 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Rheumatic fever
Allergies to abx (turns out I'm not allergic, just a herx)
Growing pains
IC
Fibromyalgia
Chronic Fatigue Syndrome
I have many other illnesses - most if not all probably related to decades of chronic untreated infections. They are real illnesses so they are not mis-diagnosed.
The worst thing of it is that they found some pretty severe abnormalities 20 years ago that they told me were the cause of my illness and that I would get better as I aged. For that reason, I didn't continue looking for answers for years.
I finally started looking again when I developed fibromyalgia. They tell fibromyalgia patients that they just have to learn to live with it so it took time to realize that there could be a lot of reasons for fibromyalgia and that the medical community doesn't know what it's doing with these types of illnesses.
When I finally realized it could be lyme, I couldn't find a doctor who would run a test because "we don't have lyme in Oregon". We are endemic here but we don't have lyme?? I didn't push too hard because I thought it was only a remote possibility since we don't have lyme here or if we do it is very rare!!
I finally got a fibromyalgia doctor who agreed to run the test. ELISA came back IND and WB came back IgeneX positive. 3 doctor's told me it was negative and not the reason for my illness.
Then I found lymenet. If it weren't for lymenet telling me how to get an LLMD, I'd probably still be wondering what is at the bottom of my illness.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
Lack of Coordination/and Balance Issues as well as Left/Right Disorientation problems.
Usual childhood diseases [Measles,Mumps,Chicken- pox].And Tonsilectomy/addenoidectomy age 4.
Grade School years: Also Pneumonia w/ ongoing *listing above* from Early childhood and Growing pains continuing thru...
Junior-high-thru- Highschool : Strep throat,Mono-, Various flu like Symptoms, Heartburn,stress. Possible Reflux, Ulcer etc.Painful Chest Spasms/w/ extreme Drop in temperature[like 93'F I think].
Various *Gyn' problems from Age 14[hmm also when I had Strep and Mono' together].Dysmenoreah/Amenohreah,Dx'ed as Adult w/ Endometriosis and PCOS resulting in Total Hyst '94.
Interstiatial Cystitis, frequent cyst problems at base of bladder/end of Urtital[sp.?] tubes.
CFS/FMS/IBS/TMJ/and Tinnitis
Gall bladder Disease/gallstones[ surgery '04].
Rt. Neuro Migraine/Migraine Variant/Migranic 'Seizures etc.
///// '95 CT scan Brain: Rt, Frontal Lobe small sub-Aracnoid Cyst of " Doubtful Significance..."/////
Yeah,thats why I have White Matter Lesion disease now,w/ 2 demilination lesions on my brain now.
Possible Prolactinoma on Pituitary[?] negative [ Milk in breasts for years],
Deviated Septum w/ all the Sinusitis bit...
Pneumonia like illness w/ *lung bleed [*burst Alvioli sacs]in '01.
Frequent bouts of dizziness,
Loud noises sensitivity and Light sensitivity/Photo sensitivity... Did I say Chostachondritis and Pleurisy at various times?
After HS Graduation,College: Thoraxic Outlet Syndrome [w/ extra cervical ribs,surgery later in '82 w/ collapsed lung], and Continuing w/ the above issues.
Allergies, severe to Oats from Jr High on... Frequent weakness/ knees weak, and would give out Sr.year highschool... Hospitalized -called- an " Unknown Virus w/ Neuritis".
Endometriosis, at least Five miscarriages, Neo-adanoma Tumor/Cyst rt. Ovary fallopian tube,
Tested several times for MS, indeterminate. " " " " " " " " " Myastehnia G. negative.
Hopefully I haven't repeated much info' Sure I forgot some stuff... Looks like everyone elses list... I've had issues sinceI was a tiny tyke.worsenig at around 14, never got really well...I'm 51 now...Jus' confused Silverwolf here in SE Idaho.
[Hope this helps w/o being too confusing.]
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3558 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Since the Lyme/ BArt diagnosis in '06 ... We've found out about an MVP problem and the White matter lesion disease/brain .
Prolly didn't mention Dequervanes tendonitis RT. wrist/hand/arm [spent '95 summer in a cast from it].
I'm gonna go wander...and pack more boxes for our move...before I tax anything else...
Jus' Silverwolf...cornfused as usual.
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3558 | From SE Idaho | Registered: May 2006
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
somatic delusional disorder -- this is the 'diagnosis' that got me locked up for five months in two separate psych wards, including a state hospital.
also: IBS, interstitial cystitis, depression, anorexia, panic disorder, chronic fatigue syndrome, possible MS, hypochondria, nothing. mitral valve prolapse, but that was post-lyme and coinfections diagnosis.
posted
The first pediatrician I took my daughter to said that it was probably a SPIDER BITE!! LOL. And that I was overreacting.
You would think in a tick/Lyme endemic area the physicians wouldn't be so ignorant. And the symptoms were probably the flu going around in school.
The second pediatrician I took my daughter to was not sure it was Lyme.
I see flyers educating the public but where are the ones educating the physicians?????
Posts: 12 | From Northern Jersey | Registered: Jun 2008
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**Note: all of these are actual conditions I have but no one could fully explain my symptoms with them.
Posts: 96 | From Ft. Worth, TX | Registered: May 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Update...
Been hand writing the lists. About 200 different diagnosis so far.. and have only gotten 2 pages done!
Thank you all... good information. I am going to go count to be sure we have at least 100 people with a list.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
ALMOST THERE!
We need 12 more people to respond that haven't already.
Anyone?
I know this is hard to do and I am really impressed by the details and time it took to do it. Hope it didn't bring up too many bad moments or memories.
posted
"Conversion disorder" (you had a real illness, babesia, it is gone but you need psychiatric help). Posts: 520 | From Maryland | Registered: Jan 2007
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
endolymphatic hydrops
multiple sclerosis
depression
fibromyalgia
Posts: 1268 | From Clearwater, Florida, USA | Registered: May 2004
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posted
arthritis,fibro,chronic,fatigue,gerd,ibs,migranes,myofacial pain syndrome,chronic sinus infections, had pnemonia 2x and heres the kicker cushings disease all incorrect dx's in reality it was babesiaa all along.
Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
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-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
K, I am chiming in my two cents worth, I am 31........ Pseudotumor Cerebri myofascial pain disorder 3 different jaw disorders uterine fibroids uterine and ovarian cysts have had cervical carcinoma in situ PCOS fibrocystic breast tissue EBV CFS Fibro Lupus(possible) Migraines Cluster headaches spastic colon IBS GERD severe gastritis have had gallbladder removed ALL THE DIGESTIVE ISSUES WERE DX'D BY SCOPING hypochondria PTSD OCD GAD (Generalized Anxiety Disorder) Chronic anxiety Depression Arthritis psoriasis eczema pityriasis rosea
That is all I can think of at the moment, but I know there are a few more
-------------------- TL Posts: 365 | From OK | Registered: Jul 2007
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Neuro's # 6 - 11 Balo's Concentric Sclerosis (Nasty version of MS)
-------------------- When you are going through hell, just keep going. Winston Churchill Posts: 20 | From Georgia | Registered: Aug 2007
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posted
Upon getting an MRI of my head, it was found that I have a Chiari I Malformation. Because I was referred to a neurologist, he thought this might be causing my sympptoms. I mentioned lyme to him, as I had had a previous physician confirmed EM rash in 1998 with no treatment to follow. In order to just get me out of his office and to have someone shoot down the lyme suspition, he referred me to Infectious Diseases at a local hospital. After a very thorough history and many labs (all negaitive) the Infectious Disease doctor diagnosed me with lyme an scheduled a picc line to be placed with 30 days of IV rocephin. I found a LLMD to continue my IV treatment after the 30 days was discontinued by the ID docs. Finally, after 10 weeks of IV rocephin, and 6.5 months of oral antibiotic therapy, I tested CDC positive on a Westen Blot conducted at the hospitals lab.
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Answering your ?? to Tailz - "PCOS" = Polycystic Ovarian Syndrome
simultaneous Strep Throat + Kidney Infection (suspect cultures not run as vials of patients blood were found in Dr's garage fridge/freezer when he was arrested on drug charges)
Peptic Esophogitis
multiple Upper Respiratory Tract Infections & bouts of Bronchitis
Pneumonia
Stress
Anxiety
PMDD-Premenstrual Dysphoric Disorder
FUO-Fever of Unknown Origin (I gave up, thought it was probably the thermometer)
Simultaneous Dxs- Depression, Allergies and Dr was working on Dxing Sleep Apnea, when I was bitten by a reduviid bug (vector for Chagas) and went to an ID (to whom I spilled my guts over every Sx, Dxd disease and possible exposure to any possible infectious disease that I'd ever had) only to get the following Dx:
Multiple Somatoform Disorder-"multiple somatiform complaints indeed", "complaints numbering 20-30", told "consider alternative therapy such as massage, physical therapy and acupuncture for possible control of some of her symptoms"
TMJ
The flu, followed by Irritable Bowl Syndrome and mild Proteinurea
Astigmatism
"Broken blood vessels under the skin" at age 12(circular petechial rash, Derm attempted to burn the vessels I couldn't take the pain & decided to live with it, recently Levaquin made it go away so it may have been Bart-related???)
???-(On Biaxin XL)-"I have no idea why you're reacting to the Biaxin like that. I've never seen this before. It doesn't appear to be allergy." (pinpoint rash all over abdomen & extreme air hunger, requiring albuterol & Advair to get through the 10 day course of ABX)
???- (On Amoxi) "I have no idea what that rash means. It doesn't appear to be allergy." (same pinpoint rash covering abdomen as appeared previously on Biaxin, different duck - same practice)
That's all I've got for now . If I think of anything else, I'll tack it on later.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
PS-
Dxd with ??? - had fluttering in chest during pregnancy, (heart sonogram thingy ??? )was normal,
never received the Holter Monitor from the Cardiologist,
the fluttering stopped and I had a baby so I didn't really care as long as it didn't come back.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
Benign positional disorder (to explain the vertigo) Anxiety Peri menopause (I'm too young) Bronchitis Bursitis of the hip Chronic Fatigue Syndrome Lesions appeared on MRI the neuro wants to do a spinal tap to rule out MS.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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12/2006-neuro said " Basilar migraines and Benign Fasiculation syndrome" (at the time I had a positive IGM band 23, but was never told and new nothing about LYME Test from neuro)
4/2008- neuro again said BFS and to go home and have a drink.
Three days after that wonderful wrong dx from neuro, primary dr tested me for LD and it came back positive.....
I only wonder how things would have been if I would have been treated 2 years ago....
Posts: 10 | From King of Prussia, Pa | Registered: Mar 2008
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MS ALS Addison's Disease Post-partum depression Gastroparesis (did have this but wasn't the cause of making me so sick, just a by-product of lyme)
Posts: 561 | From mass | Registered: Jul 2007
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
clinical depression stomach aches (kid trying to get out of school) fear of having BM's (as a child) hypochodriac/faking/weak constitution over-sensitivity EXTREME anxiety, SEVERE OCD by the time I was 8-years-old allergies swollen eyes codependency on Mother (anxiety) fear of leaving home (anxiety) homesickness (anxiety) mono thyroid problems mytral valve prolapse of the heart horrific mind-blowing two weeks worth of PMS (every month for over a decade) mind blowing stiff neck (like in a vice grip) freezing feet, hands and nose even in CA & FL severe lower back pain (had to take steroids for my "slipped disk") herpes simplex on my chin in a clock like circle? skin tags conjuctivitis bladder control problems melasma of the skin chronic insomnia extreme daytime fatigue rage impulsivity "psycho" risk taker crazy one in the family; black sheep promiscuity heart palpitations acid reflux extreme stomach pains/GI Tract issues chronic sore throats thrush (several times) vomitting sensitivity to light, noises, smells warts severe acne germ issues compulsive washing/bathing tmj clumsiness, dislocated knee from swinging a bat self-hate weird reactions to food...swollen lip suicidal thoughts hopelesness, envy, jealousy due to low self-esteem ingrown toenail fungal toe infections soft teeth (14 cavities first check up as a child) roasecea of the skin anorexia body dysmporphic disorder night sweats delusional thoughts ritualistic behavior headaches severe back acne reclusivity/turning off phone/towels over windows overdose of xanax actions without thinking of consequences smoking cigarettes and other incapable of trusting or being truly intimate on an emotional level inflexible/afraid of change my way or the highway self-blame for almost everything irreverent alone
Interstitial Cystitis IBS Hyperventilation Sitting wrong way causing numbness!!(in arms too?) Right pupil more dilated(told neuro but didn't know why, still don't) Posts: 2541 | From Northeast | Registered: Jan 2008
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
Tincup.....I can't imagine that you want to hear more!!!
Atrophied thyroid....removed with nodule
Nutrient deficiencies
Heavy metal poisoning (mercury)
Food, inhalant, chemical allergies
PMS
Menopause....
Hormone imbalances
Miscarriages (3)
Adrenal Exhaustion
MCS
Arthritis
Asthma
Candida
Depression
Bi-Polar
Fibro
Chronic Fatigue (self dx)
Despite all......there was a part of me that thought ALL of it was in my head. Health care professionals confirmed it by their attitude toward my complaints.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ok-you got your 5
are you using graph paper to sort this out???
ps i just added one...sorry
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I am so grateful you all have taken time to do this survey. Thank you so much for spending your time making this come to be!
I will cut it off here... make a final count (including emails).. then start sorting the last 2 pages into categories.
BTW- Good news! The proposal (idea) for this article has been approved. It already was actually... but I gave them the topic titles this time... and they were happy with them.
There will be 4 articles (with possibility to continue doing more if I want- yippee)... and 2 were submitted already and will be published soon... so the third article- this one- will hopefully show people what the heck is going on out there.
The 4th article will be on our precious children with Lyme and tick borne diseases.
Without your help here and the other posts.... we couldn't get the word out there to folks who need to know.
I know you cut this off but one thing that really stands out & went thru with an endo that set my teeth on edge - he gave me powerful brain drugs (samples) for depression! after seeing off the chart antibodies and previous ebv...so he gives me some depression meds..can't remember what they were - I tossed them in garbage.
Two other drs dx'd hashimoto's & lupus which I may have prior to zee tick bite/bulls eye rash.
Posts: 78 | From SW | Registered: Jul 2008
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posted
I would like to add a little something. A special Thank you to "Laura" who posts here sometimes.
When I was waiting for results for the MRI done on the small of my back. The neuro Rx'd Neurontin for me to take for pain and neuropathy.
At first it seemed to be a miracle drug. The neuropathy subsided. But then I started having side effects.
The Neurologist said Neurontin was safe and had no side effects.
I went to the internet and researched Neurontin and found a useful site: "ask a patient.com"
You can search any drug here and patients rate it and talk about it.
I described my original symptoms and asked if anyone out there knew what was wrong with me.
I heard for the first time - in a email from a perfect stranger:
"Could you have been bitten by a tick?" Laura suggested I get tested for Lyme and I told her my doctor said we don't have Lyme where I live.
Gently, she guided me to the ILADs and Calif. Lyme websites and here, where I learned we do have Lyme in So. Calif.
So - I thank Laura - if you are out there - for helping me and my daughter.
Blessings, Peedie
Posts: 641 | From So. CA | Registered: May 2008
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bettyg
Unregistered
posted
tincup,
never saw your final note saying you got 100 since your subject line shows you still NEED MORE!
good deal; writing 4 articles!! fantastic...
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Have you yet gotten:
Pregnancy!
Yes, people often get backaches, nausea, and fatigue when pregnant. (Don't be such a baby about it.)
No, you really don't understand. This is excruciating. There's something really wrong here.
There is nothing wrong with you at all. You are the picture of perfect health.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
Son: diagnosed & treated (30 days each time) for Lyme at age 13 and again at 14
Seizures started at 15 DX: Epilepsy
At 21 Psychotic episodes that rolled into seizures DX: Pseudoseizures
At 22 LLMD DX: Lyme, Bartonella, Babesiosis
He is now almost 24 and has been on abx for 18 mos. and is much improved.
Posts: 89 | From Long Island, New York | Registered: Mar 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I was diagnosed with something called "Over-Exertion Fatigue" because I got severely ill suddenly after participating in intense sporting events.
Sounds like a pretty lame diagnosis to me, but honestly, the doctor was trying his best and doing a lot of research on my behalf. He was very apologetic and admitted he didn't know, so at least he wasn't a know-it-all.
Another weird diagnosis I got was after a strange reaction to Effexor, I was diagnosed as having an "Atypical Panic Attack." This reminds me of the "pseudoseizures" listed above. It's not a typical X or Y, but at least it LOOKS like one, huh doc?
But then again, I guess "Post Lyme Syndrome" also "looks" like Lyme!
Posts: 4590 | From Midwest | Registered: Jun 2008
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