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DaveW
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Posted: Fri Jun 24th, 2005 20:18 |
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Hello (((Good Folks))),
My major Th1 disease symptoms did not begin until age 30. However, I have recently come to realize that I was very likely infected with CWD from my early childhood.
Could it be possible that your symptomatology may also have started in insidious ways, much earlier than you thought it did?
I do recall having several health "anomolies" that I could never understand as a child and in my youth. I am going to list a few of these to see if anyone else can relate.
In my school years, I was always in the top three in my class for muscular strength and in a 100 yard dash. But I would come in dead last in an 800 yard run (No endurance). The same went for camping trips or other sustained effort that required endurance. I tired earlier than my peers, and seemed to take longer for recovery, even though I had more strength.
This was not a major problem in my youth, but it was a difference that I do recall. I now wonder if this was an early CWD symptom.
I also often looked pale in my teens (which I hated during my dating years). After age 30 when my symptoms worsened, my face was always puffy and I often looked "like death warmed over".
In my teen years, I seemed to suffer more from hang-overs than my peers - especially from beer. Beer also got me drunk much faster than any other alcohol.
Although I had an iron stomach and could eat three big plates of anything when I was young, I had major problems adjusting to changes in water when travelling. I often had severe stomach cramps and loose bowels for a few days whenever travelling to a new location. I had a similar adjustment period when returning home.
I also had a greater preference for late nights. Not a morning person.
I also herniated a disc in my lower back at age 21, just from sitting on the ground with my ankles crossed to fix a bicycle tire. I found this strange, as as I had never had any back problems before this. I had a sturdy and flexible wrestler's physique. The Surgeon (back specialist) who perfomed surgery on my lower back, said that he had never seen such inflammation levels on the nerves. The operation was a complete success, but it took over a month for the pain in my legs to subside.
I also perspired noticeably less than average.
Biting down also would occasionally give me an unusual sensation on my back teeth. It felt like I was biting down on a rubber pad between my back teeth, even though there was nothing there. When I asked other kids if they ever experienced this, they said they had'nt. (P.S. I now have significant herxing in my jaws).
I also seemed to catch a lot of colds, and every cold quickly went into my chest. Then I would have real difficulty getting the cold out of my chest. It seemed to take forever for me to get over a cold.
In the last ten years, this has flip flopped. I have caught far fewer colds and flu's than other people around me. I think I went a full year (two years ago) without any colds or flu's at all, even though I work in an educational institution were lots of people were frequently sick.
I suspect there were more anomolies, but my memory is not as good (or fast) as it used to be.
Can anyone relate to any of these that I have described?
I suspect that our particular body chemistry (and body systems they control) may be dysregulated somewhat differently for each of us, so we may all have had different experiences. For example, while I did not seem to perspire much at all, another person may have perspired excessively. Still others may have been normal in this respect, but had other unusual health anomolies.
Did you have any other strange health related experiences in your youth that the rest of us might relate to?
If you respond to this thread, can you please indicate whether either of your parents also suffered from Th1 symptoms or diseases? There may be a link here, in that those whose parents were infected may have been infected at an earlier age (perhaps even from birth), whereas those who were the first in their family to have Th1 problems, may have contracted it at a later age, and been totally symptom free in their youth.
My mother was relatively symptom free of major Th1 disease until her later years (except for low energy). However, my father died (from what I now believe was sarcoidosis) at age 45.
I look forward to reading about your experiences!
Regards,
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Aussie Barb
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Posted: Fri Jun 24th, 2005 22:03 |
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Whenever I have tried to work out when I actually became ill, I go back, and back... and back... so it is possible / probable that all may have started in insidious ways, much earlier than I first thought it did.
from memory, in chronological order:
my birth/delivery took 4 days labor. 9lb 12ozs
I was born with an umbilical hernia.
bottle fed. a lot of crying. clinic sister told my mother not to feed me "too much" cos I was born heavy.
school age: running races: always last. legs - bad circulation when standing still on parade etc. no ability or endurance for hard effort of physical activities. yet very strong in other ways.
had tonsillectomy and haemorrhaged, and tonsils grew again. have been a bleeder. approx 7yo
then hospitalised with *a virus*.
hospitalised with an abscess to be lanced, and chicken pox. approx 11yo
other signs as a child: bad circulation in legs when standing still - itching purple blotched.
Being the eldest, I have worked hard.
had nightmares. car sickness.. pruritis. pain in arch of left foot.(like a stitch or a tear)
lots of dental amalgams in childhood and none in adulthood.
1 primary tooth came out in pieces.
bitten by a centipede or scorpion. (cant recall which)
double ahah gasp of intake inspiration of air. my mother used to comment on it when I was a child.
vaccinations:
salk polio vaccine.
TB
smallpox
whooping cough, diptheria, tetanus.
later, sabin polio vaccine.
school: always came in the top of the class until the age of about 9, after which I just couldn’t find any motivation to do my homework.
mentally perceptive but tired sluggish.
thought to be lazy. I understand why now.
nosebleeds till adulthood.
anxiety, severe depression esp at 14. kept it to myself.
after age 15, being in the sun would make me want to lie down and sleep right there.
I have always had GI issues on MP. I find that eating small meals more freq and using my meds helps. I dont 'really' 'enjoy' food at this stage and havent for ages. I have to eat to keep the symptoms down and I am hungry sick. I dont prefer sweets. mostly I prefer savoury.
when I was a teen I used to say "I am hungry but I dont feel like eating.. same now.
I have always declared myself to be flat out or flat out.
I didnt feel the cold. couldnt bear to wear a coat.
found excess clothing stifling.
couldnt stand winter clothes (too hot)
no clothing around neck
air hunger
nose stuffy forever
liked to touch warmth rather than cool. would never use an icepack eg.
later: alcohol: Beer: half a glass had an effect, so no drinking.
hungry: in teens could eat and not gain weight.
preferred dim lighting. have been called *the mole*.
I also perspired noticeably less than average.
and never thirsty. no need for water even when working hard outdoors..
hayfever: high dust mite allergy.
in first pregnancy: itching red welts.
one eye would swell shut at any time with no known reason.
scratching my throat with my tongue and rubbing my nose
ingrown toenails - surgeries to them
I have worked closely with people.. - and with cattle and goats in health management situations. and cleaning barns etc.. a lot of exposure to illness and bacteria.
1970s
pregnancy: very tired, morning sickness all day, air hunger.
1 hip would seize up completely if too much activity.
striae or stretch marks which blistered and itched.
didnt recover after first pregnancy, or between pregnancies, or at all.
All assisted deliveries except 2nd child, including last 2 deliveries being 2 C sections using epidural.
had blood transfusions after first and 4th deliveries. the last was 4 donations called in off the street in emergency..
I was never able to be 'bothered' to play board games, cards, etc after the first birth.
General anesthetics, and surgery with epidural anesthetic: knocked me flat/flatter for at least 12 months.
unhappy pain: R side under ribs
chokey cough: occasional. + mucus. always when cry or laugh (all my adult life)
since on MP: when I eat or drink, or when meds due.
-viral meningitis 1979.
age when disease became more obviously debilitating: 29 (4th pregnancy) I began to puff up, and go downhill. more viruses.
had Giardia
1980s
Headaches, and getting worse as time went on. lasting 8 days at a time. till MP.. now no more headaches.
1990s
Full body function progressively failing.
paralytic IBS
Dental fractures in adulthood.
sensory overload - too much, too many, or too fast in the car.
-unable to bear to wear jewellery
socially isolating, staying away from visitors etc.
lump R arm
small bump on nose
1996 severe depression
at separate times:
high anxiety with no trigger
agonise over past situations etc
misery
self deprecating thoughts
a feeling of "being pulled out of life" or "floating off, dying" - when lying down and ill..
2000
antidepressants and relocation to isolate self.
BCC removed + skin graft at juncture nose and L eye
2002 -2005
Diagnosed with Inflammatory disease and endocrine dysfunction by ACNEM Dr: Rx thyroxine and natural progesterone and B12 methylcobalamin instead of antidepressants.
have to lie down while travelling in the car, or waiting at the Drs.
could drive the car sometimes, and sometimes not for weeks.
have a wheelchair to use when going shopping.
Used to be an avid reader: Now cannot read books, magazines, or listen to music or book tapes. need 'help' (husbands company) to watch television.
Pre MP I was always feeling "sick" in the gut. not nauseated per se.. and the Dr couldnt understand what I was trying to say. (if you are not nauseated how are you sick? - inflammation gives a perfect explanation to that now)
I was surprised to be lung herxing on MP, and it has continued on and on, but when I thought about it, I have been air hungry for as long as I can remember, and have nearly choked if I laughed or cried.
I had never even thought of most of these things as symptoms of illness until MP.
My Family all show signs of Th1|: deafness in 1 ear. fatigue. infected wisdom teeth. bleeding. 1 daughter with Dx CFS. we have as a Family always eaten particularly healthily. I was bottle fed. but I breast fed my own children.
My parents are very healthy for their age. They have always eaten healthily and are still very active at 75 and 80.. they have their own teeth still. Mother has a knee replacement and still dances multiple times per week.. they and my siblings show signs of Th1 but are all able to keep up the required level of functioning.
My grandparents had diabetes, stroke, gall bladder, no dementia. Anxiety and depression and other Th1 symptoms in relatives.
Added Personal Notes: 2007:
Neuropathy and paresthesic symptoms: new understandings dawning.
As immunopathology: Feet symptoms: I can feel that I have feeling coming into my feet. I hadnt known that the facts:
All of my Life:
I could stand on hot bitumen and rough gravel didnt mean I was 'tough'. it meant I was ill. oops.
or that I (my hands) could wash up in hotter water than anyone else in the Family - didnt mean I was 'tough'.
or that I could swallow the hottest cup of tea.
(cannot do so now) all of these things are symptoms of returning sensation thru immunopathology.
How was I before MP?
Many times I was incapable of driving the car, or of walking around shopping, or going down to the Beach. Over the years, I had to let go of a bit more and a bit more. eg.. the shopping, the cooking, the cleaning, social contact, Family contact, etc etc. I would readily do things when I could do so.
Hospitalised October 2007 for 6+ weeks: Liver and kidney failure, and reaction Diabetes -out of control. Had blood transfusion because anemic from rectal bleeding.
Feb 09 Add:
Now having "foreboding" IP. I used to live with this thru childhood and adulthood right up till I went into severe depression. Interesting that I can see this now.
I was diagnosed with severe depression in 1996, but when I try to define when it started, I can go back and back, and know that really, depression has long been a companion.
I like this: Chris wrote this Feb 09:
"You know, I thought I was complaining a lot, and unnecessarily, when I gave out herx numbers of 7 or 8 or more. I wasn't. I'd just lost sight of how good healthy people feel.
The other side of the problem is that healthy folks have absolutely no idea of how bad TH1 folks feel. My wife is just now seeing those days of absolutely no energy that used to be my usual state. She was patient with me, but there's no substitute for personal experience to engender empathy."
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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LeAnne
Member in Phase 3
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Posted: Fri Jun 24th, 2005 22:27 |
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I was wondering the same thing. The more I learn about the bacteria, the more it makes me wonder if it started when I was young. I know my mother said that I was allergic to regular formula when I was a baby, but the milk allergies went away until about 10 yrs ago. I also had skin sensitivities. I use to break out in hives all the time when I was a toddler, but it went away. When I was a teenager I started having these white spots in my skin, that would appear during the summertime. The doctor prescribed ketoconozole and Nizoral cream!"spelling?" I also had mumps three times! I have always required alot of sleep, even as a young child. I have had four pregnancies. My mother has lung problems, the doctors don't know what is all over lungs. She has osteoarthritis and polymialgia reumatica. One of my sisters has severe Multiple Sclerosis. My other sister has a hyperthyroid condition. I think I have probably had the bacteria a very long time, although, I didn't start feeling sick until about ten years ago. Every time I went to the doctor for a symptom or problem, they either couldn't find anything wrong, or they would try to just treat the symptoms.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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Todd1974
Member in Phase 3
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Posted: Fri Jun 24th, 2005 22:34 |
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Dave, this is a post that I feel compelled to respond to for many different reasons.
What is most striking is how identical your symptoms are to mine. I'll get to that in a minute but I should start by saying that I believe my CWDB issues began when I was a toddler taking amoxicillin for ear infections. That led to more ear infections, asthma, allergy shots, prophylactic use of prednisone and more antibiotics throughout my childhood. At 14 I started having severe gastrointestinal symptoms (i.e. nausea, relentless abdominal cramping and diarrhea). I saw a gastroenterologist who ran no tests and remained convinced that I was on heroin (of course at that point I was a sheltered 14 year-old suburbanite athlete kid who barely knew what a Marlboro was). At age 16 I contracted "mononucleosis" and the descent began shortly thereafter with the CFS diagnosis.
I was thin and incredibly strong for my size and won my weight class in 3 consecutive lifting competitions during high school. I managed to remain successful as a competitive swimmer and track athlete until age 17, though I was known only as a sprinter -- distance events were impossible for me. Then, out of nowhere, I fractured the transverse process on L1 when I was 16 while doing a flip turn at the end of the pool, something I had routinely done thousands of times. Two years ago I fractured the sesamoid bone in the ball of my foot and the podiatrist commented that he only sees this injury in marathon runners or the elderly.
In my 20's it was nothing but severe illness, IV antibiotics, IV gamma globulin infusions, constant sinus infections, fevers, etc. The most debilitating symptom during this time was some truly horrific intestinal cramping/diarrhea that was later diagnosed as late-stage IBS leading to Crohn's. Those were dark days that I'm glad to report are mostly behind me.
I'll be 31 next week and I'm still trying to lift weights whenever I can. But like you I have never had endurance during exercise and I'm exhausted for a day or two after even a light workout. Ironically, the symptom that started this whole research process a couple of years back is the lack of sweating. My chest and back seem to perspire in small amounts but my face and neck are completely dry after heavy exertion. Thinking I was "dogging it", on several occasions this prompted coaches and trainers to push me even harder to predictable results of arrhythmia and illness from overexertion.
I struggled with sinus infections and bronchitis and it seemed like every time someone I knew was sniffling and sneezing, a week later I'd be popping antibiotics like candy and irrigating my nose with the bulb syringe and salt water.
I didn't notice the extreme pallor until my early 20's -- my body would tan but my face and neck would remain as white as a sheet so I've resorted to spray tans to look human during the summer months.
I'm still very alcohol-intolerant and I've given up even beer and wine for the foreseeable future.
My short-term memory is a concern. Recently it's gotten to the point where I have to rely on my roommate to remind me to pay my own bills. Long-term cognition is still intact, fortunately.
Neither of my parents show any signs of Th1 disease. My dad is 71 and still working 50+ hrs a week. He's also still kicking my rear end in strength and endurance. My mom is 59 and working 40+ hrs. Both parents look 10-15 yrs younger than their ages suggest. However, my younger brother and I had CFS at the same time. His began at age 13. He's mow 22 and functioning normally with no disease symptoms whatsoever.
This was an enlightening post and I also hope to hear what others have to say.
Take care,
-Todd
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CFS dx '92/Lyme dx '01 Phase I 6/1/05, Phase II 9/21/05, Phase III 9/17/06
3/05: 1,25D=70, 25D=17; 9/05: 1,25D=45, 25D=10; 2/06: 25D=5; 9/07: 25D=5
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TickTock
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Posted: Sat Jun 25th, 2005 09:46 |
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I know my problems started early. My mother had a kidney infection and gave birth to me 3 weeks early. I was 6 lbs 1 oz. Then, i got rubella. I had latent hearing. In my very early years, though, i was a great athlete and great student. A little golden girl. I look back at about the time in 5th grade when i got a case of the chicken pox. That was the first time i felt mentally disconnected and exhausted.
I'm assuming i got my tick bite at camp around the age of 14. because all of a sudden my cognition, memory, eye hand coordination all began to disintegrate. That first year i went from energized, first singles tennis player, happy extrovert to fatigue, insomnia and loss of coordination. My straight A's went to C's and eventually i tried easier classes (which didn't help). I got bronchitis in 9th grade and from that point on i gained large amounts of weight, became rageful, anti-social, anxiety ridden and depressed. By the beginning of 10th grade, i refused to go to highschool. That summer i voluntarily admitted myself to a psychiatric hospital for 7 weeks.
I've fallen apart and then re-entered the world so many times since then. (i was diagnosed with every possible psychiatric ailment and given every possible anti-depressant known to man.) Finally, I was diagnosed with Lyme in December 2003 and after trying IV for 4 months with no effect, my LLMD recommeded the MP which enabled me to began herxing. I'm 39 years old now.
My mother was energized and happy up until her late 40's. She fell apart. Exhausted, fatigue, depression, body pain, calcium deposit in her shoulder, memory loss, cognitive problems. So i'm sure something was brewing the whole time. She also recalls having 104 temperature and chills on a vacation in Mexico. my sister (32 yrs. married with 2 kids) and brother (34 yrs. and married) also have symptoms, they both have joint pain and move slowly getting fatigued easily and getting sick often, both struggled in school, but don't show lany Lyme.) My mother has been diagnosed with mycoplasma. My father got a tick bite last year and was put on antibiotics about 9 months after the bite. I still think he's showing terrible fatigue, cognitive problems etc... but, he's holding up the family so he pushes through.
I definitely think all three of us kids, and perhaps even my mom and/or dad had some serious cwd's from birth. My mom's mom had big time symptoms of lyme, but died before ever being tested.
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Dx: Lyme Disease,Bartonella 25yrs/ 9/26 25D=9 1.25D=79 4/05 25D=8 1,25D=44/ 10mg Lexapro,.5 Xanax / 9/04 start MP/ 5/21 Benicar40mgQ6H Q
8/7/05 Phase 2 10/24 Benicar 20mgQ6H
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shamutooth
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Posted: Sun Jun 26th, 2005 02:38 |
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I have always had trouble with hangovers and with extreme soreness after working out. I used anabolic steroids for a while in my early 20's which helped post exhertional malaise dramatically.It helped many of my other TH1 symptoms as well.Another drug I took was a medication called clenbuterol, which had the same effect as the steroids, although clenbuterol has anabolic effects attributed to an anti cortisol effect.When I married my wife put an end to my steroid days Another problem that I have never heard anyone mention here is reading vision problems. When I became sick, I would get "headaches" when reading, and I have needed reading glasses since being 16 years old. I have not needed them for over a month now, which I emphatically attribute to the MP! Also, when using clenbuterol, I had to take it for 2 days on, 2days off, or else it didn't work. Has anyone expirmented with taking mino the same way(2 on, 2 off)?Last edited on Sun Jun 26th, 2005 02:43 by shamutooth
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MCS,CFS,IBS,insomnia,anxiety,depression,started Doxy July'04, MP Sept. 04; Benicar 40mg 3/day; Phase 2 started 2/2/05; 6/28/05 D results 25D=29,125D=47;11/13/05 25D=10
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wytnez
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Posted: Sun Jun 26th, 2005 17:26 |
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This is so frustrating for me because I can't say that I have ever been sick as a child. I have always been healthy and energitic.
Child : gymnastics, track. Always running around full of energy. Played football with the boys. We would compete against different streets. Our street would play another street and who ever won that one would go on to play another street. So we spent a lot of time outside in Colorado playing, riding bikes and just doing kids stuff.
Teens: gymnastics, modern dance, Choir, always on the go.
Up until last year. Working out 5 days a week, enjoying life doing yard work, writing music, performing, camera operator for my church. Organizing events. Just always doing something fun. Swimming at Barton Springs pool is what I loved to do early in the morning like at 5am. I miss that.
But last year was the most devastating year that I have had in my life. I lost 4 family members in 6 months all in the same family. 2 uncles, my Dad and Grandmother. This totally floored me and I went into a great period of mourning. It wasn't until I got back from Colorado after burying my Grandmother that I noticed that I was wheezing. It started out suttle and then by October I really started to wonder if something was wrong. It didn't keep me from working out though but I noticed that one time when I had finished about 30minutes of cardio that I couldn't catch my breath. I knew then that something was very wrong.
And so here I am. I do remember in 98 my cat got out and when I found her she was full of fleas. This cause an infestation in our apartment and we had to fumagate the apartment, clean the carpet and have her treated. I had flea bites on my legs. And then we bought our house. I had one time after that in about 1999 or 2000 when I would try to sneeze but I couldn't take a deep enough breath and then the sneeze would go away. But that resolved and I went on with my life as usual and would sneeze normally. But it wasn't until I moved to Texas that I started to have allergies in November and early spring. High mold days were of a particular problem.
But for the most part, I have been healthy all my life and I look forward to getting that back. Like on Saturday morning when I would wake up I felt really rested and would sit outside in my back yard and read. I just felt good. I want that back. And being able to work out, I want that back. I just thought I would share my experience. I hope that we all can get back our health.
And for those who have been sick all their life, I hope that you can experiece a new birth so to speak. A new birth of health.
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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Reenie
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Posted: Sun Jun 26th, 2005 18:15 |
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I too, have had many "childhood health anomalies."
Is this a chicken/egg syndrome? Which came first? My already damaged immune system or did these illnesses and their treatments cause me to develop more CWDB?
As I look back since discovering the MP info, IMO, (mainly) the women in my family, especially my Mom, have had many sxs which are worsening with age, that I believe are also Th1 illness. Mom was never able to last very long as a working mom and would have to leave/quit work to recuperate.
Here's a brief rundown of my childhood: (I've prob forgotten an illness or two)
Tonsillitis - several bouts each school year, treated with penicillins, oral and injections, finally resolved with tonsillectomy, age 17
Ear Infection - resulting in a punctured ear drum, treated w/penicillin, approx age 7
Psoriasis - since age 13
Headaches/migraines - teen years
Painful menses
Chronic lower back pain, triggered by fall - age 14
Mononucleosis - age 15
Weight problem (40 lbs) from age 8 - 13, resolved thru radical dieting
The list continues into early adulthood, but I'll stop here.
I used to stay home from school for long stretches of time, all thru school, due to fatigue and illness. Fortunately, I was able to make up the work and even graduated a year early. 
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shegeek
Member in Phase 3
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Posted: Sun Jun 26th, 2005 18:18 |
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I was a sickly child. I was born with what was then called a "dislocated hip" and wore a brace for my first few years. I ended up with osteoarthritis in that hip as an adult, and had total replacement surgery with arthroplasty six years ago at age 36. I think I was exposed to CWD in vitro, cos my mom had severe emotional symptoms and died of bulimorexia (sp?) when I was twelve. Also, my dad had asthma.
I was always prone to various GI problems, including car sickness (which still plagues me today) and abdominal cramps. Of course, the docs never found anything and always said I would grow out of it. Chicken pox hit me really hard, too--I had sores everywhere, including on my vulva and inside my nostrils. I have had a runny nose for as long as I can remember, and always carried kleenex.
I tended to be very physically weak, partly because of the hip displaysia, except for one bizarre moment during the yearly strength tests at my grade school. I did the stationary hang (a watered-down version of chin-ups for girls) for almost a minute, ranking third in the class. My weakness didn't stop me from being physical, tho, and I usually played (alone) by running, climbing, and the like. I slept long hours and would get in trouble for sleeping late in the morning.
When I got a little older, I found I was very intolerant of alchohol (my dad was an alchoholic). I would get three-day hangovers from beer, so I mostly stopped drinking. When pregnant, I had morning sickness so severe that I would dry heave about every half hour. I was even more puny and weak after that. Even before the pregnancy, I would have bouts of sustained fatigue and body aches for no apparent reason.
All of this coalesced when I was about 35, when I really started having trouble walking because of the osteoarthritis. I was attending community college, and the cognitive and emotional problems were starting while my grades took a nose dive. I felt better while recovering from the hip surgery--I was taking antibiotics and doing practically nothing. But when I started at the university four months after surgery (the docs swore I'd be fine), the cognitive problems and social anxiety began in earnest, and the fatigue and digestive symptoms overwhelmed me.
Of course, there are lots of "little" symptoms that I've forgotten, or brushed off at the time because I thought I was imagining them. But I hope this helps.
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FMS,IBS,osteoarthritis,osteopenia, hypertension/ 1,25D/25D=45/44 (10/04), 44/13 (1/05), 36/8 (7/05)
25D<4 (6/06) 25-D=5 (4-08). Avoid light & D w/NoIRs 11/04 Benicar 40mg/q4h(since 1/27/05) Phase 3
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hrts4me
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Posted: Sun Jun 26th, 2005 21:12 |
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Dave,
Interesting question, and some interesting insights.
My disabling illness was of sudden onset in the spring of '02. I was at my peak as far as fitness, teaching taekwondo and cardiokickboxing 4-5 hours daily, Mondays thru Fridays, and then competing/judging tournaments on Saturdays. Who would've thought I would spend the next 6 months bedridden?
The only health problem that had plagued me prior, was that I would have bladder infections as often as every 2-3 months, and at least 2 kidney infections per year, since the age of 13.
I was on abx repeatedly for many years, and then the last few years prior to becoming ill, they had me dosing daily for prevention. (It didn't help).
I really believe that I developed all these variant bacterial forms due to this unrelenting course of antibiotics, the resistant bacterial forms developed. Then somewhere along the way the Borrelia I had contracted kicked in, and it was the straw that broke the proverbial camel's back.
BW,
Hrts
Last edited on Sun Jun 26th, 2005 21:12 by hrts4me
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LYME COPD Arterioscl Seiz FM CFS Hypertens NASH HiChol/ 4.2cmKidneyMass&Stones HyperCaPhUria Angina Arryth SOB RadNeurop BiPolarI| 1/05 25D-14 1,25D-13 2/07 25-D14| Nitro Verapamil Hydrocodone Baclofen Dicyclomine promethazine clonazepam
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Guss Wilkinson
Member in Phase 3
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Posted: Sun Jun 26th, 2005 23:20 |
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Hi All
This is a really interesting thread but I would be very wary of drawing conclusions due to response bias – i.e. only people with something to say are likely to reply. I certainly have something to say.
- I was born premature (6-weeks early) and had to have a blood transfusion at birth.
- I developed Psoriasis at the age of 8.
- I was always very fussy about food – could never eat many cooked vegetables (especially brussel sprouts or cabbage) without throwing up – still can’t. I can eat all these things raw though.
- I was always very good at sports that required explosive action – throwing, sprinting, judo etc, but hopeless at long distance running…always came last.
- Excelled academically and always came top of the class until the age of about 11, after which I just couldn’t find any motivation to do my homework. I didn’t find that motivation again until I was an adult.
- Developed Psoriatic arthritis at the age of 11, which had me very nearly wheelchair bound. But this seemed to completely disappear at the age of 13.
- Always had TM (jaw) joint problems – a severe attack would be treated with a week’s course of Valium (5mg).
- Very thin and pale as a child.
- Always had perfect teeth – not 1 filling to date.
- Always found it hard to get to sleep – it took me a long time, whereas my brother lost consciousness as soon as his head hit the pillow. Lots of nightmares…very scared of the dark.
- Started getting anxiety attacks at the age of 18 – otherwise a very confident person.
- Always had a very high tolerance to alcohol – could drink heaps and all that would happen is that I would get sleepy. On the rare occasions that I did get a hangover – it would last for days.
- I perspired profusely just thinking about exercise.
- Psoriasis started getting out of hand at the age of 20
- Kidney stone attacks started at the age of 24. Stopped when starting MP in Oct 2003.
- Started getting heart palpitations at the age of 24 – treated with atenolol. Stopped when starting MP in Oct 2003.
- Started getting severe insomnia at the age of 26 (1989). Stopped when starting MP in Oct 2003.
- Started developing stamina by cycling to work (14 km each way) – even at my fittest, I could still never run long distances.
- Started getting headache-less migraines in 1996. Stopped when starting MP in Oct 2003.
- High blood pressure became uncontrollable in 1996. Stopped when starting MP in Oct 2003.
My father has always had asthma and hay fever. My mother has always had back pains and tinnitus.
Cheers
Guss
Last edited on Sun Jun 26th, 2005 23:23 by Guss Wilkinson
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Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. (Started MP: Oct 2003 - D25...31ng/ml, 1-25D...76 pg/ml), Phase III since July 2004; BP 100/60. Feeling pretty good!
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John D
Member in Phase 3
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Posted: Mon Jun 27th, 2005 03:53 |
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I've been thinking about this topic in recent weeks. The likely- hood that so many health issues as a youth that I accepted as "normal" were very possibly the first apparent symptoms of Th-1.
I always felt quite healthy for the most part, as I was growing up. I now think back on bad knees and back pain as a high school athlete. Also suspected I was not quite normal as far as breathing and endurance. Swimming and swimming distance, and breathing in while swimming was challenging as was any sort of distance running. Memory has always been suspect and more so now. Depression on and off. Allergies before age 25, annual bronchitis infections lasted a week and needed abx to fix. Diagnosed with Sarc in 1986 and since have experienced all the classic symptoms throughout my body.
Lots of Th-1 history in my family. My mother (dx at age 50) died at 63 from complications resulting from Waldenstroms Macroglobulanemia (I understand is Th-1) Her parents were very arthritic. Her sister had Lupus. My sister had Graves and thyroid problems. John Dresser
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Sarc- Lungs dx (biopsy)1985, pred 3yrs to 88. Begin MP:Feb/04 1,25D=58.1, 25D=18.1 Phase 2: June/04. Phase 3: Sept/04. Clean-up phase Oct/06. April/05: D1,25=13 25-D=6. June06: D1,25=31 25-D=11. Sept07: 25-OH D=18
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Mellie
Member
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Posted: Mon Jun 27th, 2005 12:29 |
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I would have to consider myself a healthy child. I had 7 brothers and did everything they did...climbed trees, ran like a deer, played in the woods, swam the river, got chased by bullies and could hold my own in gym class through high school.
It was probably about 10 years ago that I got a horrible chest cold and told my late hubby that when I get "old", I bet my main physical problems will occur mostly in my chest because by that time, I was noticing that when I did get sick, it was always bad respiratory problems. I haven't had the flu in years...just bad respiratory colds.
Well, I'm not old yet (51), but 4 years ago I started with the Sarc cough. So, my prediction held true. However, my mom and sister and 2 of my brothers have FMS really bad, as did my grandpa. My late husband died from amyloidosis, which is a major inflammation disease. My stepson has RA and my son has had bad gastro problems almost all through high school. He's now 21 and has been on probiotics which has helped. I believe he is borderline Crone's. I believe I have FMS too; but not nearly as bad as others in my family.
Are these "critters" we are passing around??? 
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Cough-1/02; Eye L.Node Joint Muscle Anxiety Heart Palps Tinnitus Feet-1/05; Dizziness-7/06; Thyroid out-6/95; ACE 57-1/05; 69-6/05; Synthroid. Limit D foods & sun since 6/05. Have Noirs. MP Doc appt. Oct 3.
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Dr Trevor Marshall
Foundation Staff
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Posted: Mon Jun 27th, 2005 13:35 |
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Mellie,
Everybody considers themselves a healthy child. They have nothing to compare with, and drive themselves a little harder just to keep up with all the other kids.
Yes, the bacteria causing these Th1 diseases are communicable and spread widely within families. Take a look at Dr Lida Mattman's presentation on the DVDs of our Chicago conference. Some of her slides go into the issue of communicability in some detail. You might also look at my presentation (also on the Chicago DVDs) "Can I Catch It?"
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debbie
Guests visiting Phase 1/2/3
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Posted: Thu Nov 17th, 2005 18:58 |
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| hello everyone, i have managed to get through childhood, finish nursing school work p/t while raising four boys. i also had symptoms from childhood. my grandparents all had th1 diseases, although back then they were just normal getting old diseases. despite immunizations i got mumps in childhood, rubella in nursing school and was tested negative for antibodies to measles when i went to work in the hospital. i had a t+a with the adnoids growing back, so another surgery was done. frequent ear infections, and chronic back pain some times so intense i spent time out of grammer school and home traction during teens. when i finally got an mri as an adult i had a huge lumbar disc bulge, nerve damaged and the dr said he had never seen back nerves so thinned out and damaged. in my teens i was always pale, had horribly painful hemorragic periods. diagnoses with endometriosis in teens, uterus had adenomiosis when finally taken out as an adult. starting in childhood i was car,boat any motion sickness which stayed till now. in hs while on the dance team a twirl would leave me feeling dizzy and nauseous. in my early teens i had a fever and swollen lymph glands and sore throat. all test for months were negative esp mono which was continually neg. but from that point on i would have days upon days that i couldn't stop sleeping. my boyfriend would take me out and i would sleep until we got there wake up for a little then sleep until we got home and i went back to bed. i would also have wierd symptoms of over whelming dizziness, nausea, perspiring, and we would have to leave even restraunts out of the blue after ordering, then in a couple of hours i was fine, and he'd get me pizza. can you guess who i married- who else would put up with this crazy body. i had no cavities until my teens then every molar got filled to the brim with fillings. i also started to have depression but never discussed it with anyone. i also suffered from cervical lesions needing cryo surgery in my early teens(sexually unactive), then around 21 i suffered from periodic swollen painful ankes with lo grade fever and gi problems. i was diagoised with colitis. all 4 pregnancies i had hyperemesis with hospitalization until 16 wks, preterm labor, post partum depression, numerous breast infections, one post partum hemmorhage. all kids had colic, severe requiring meds( all are now lyme positive). all my adult life i would exercise and do sports but my cardio was always bad despite trying to improve it, i never sweated, i always ate and ate and was overly thin. i had so many gi tests and was told i had irritable bowel. i hardlynever got colds or flus but every month or two i had days of feeling so hot and sweaty, 99.4 temp fatigue and unable to stay awake. i was eventually diagnosed with manic depression after a suicide attempt ( i spent a year with a therapist who said i could control it with behavior modification) and a stay in a mental hospital for med stabilization. i still suffer from anxiety, depression, insomnia i always got drunk from 1/2 glass of wine or beer and was hung over for days if i had hard liquor. then i had surgery for calcium deposits in the salivery gland, then some of my joints(shoulders, elbows )had deposits and pain. i was diagnose with carpal tunnel and and arthritis with bone spurs.and the neck pain was caused by disc herniations. i also got sick everytime i traveled out of the us, mainly from giardia i have not been able to work for years. everytime i try something new i get other symptoms. i stopped going to dr due to all the meds for treatment of symptoms. now i developed tinnitis, huge dizzy spells, my optic nerve is so thinned out but no one knows why,blurred vision and i can not remember pin numbers and i get lost and can not figure out where i am for a min or two, i say words out of order and can not express my self. this letter is taking hours to do.. i am sure iwould have a diagnosis of cfs and fibro if i would continue to go to drs. and of couse i look healthy. when a new friend just found ouy she had chronic lyme, she finally sent me in the right direction. finally my pcr came back positive, my immune system was so shut down that igg and igm westrern blots were neg. all my siblings are positive and my mom and husband are too. everybody is still functioning although they all have th1 diseases. alzhiemers, psoriasis osteoporisis, cardiac disease ,depression and anxiety, insomnia, everyone takes a nap, bells palsy, muscle pain, body pain, gallstones, kidney stones, back pain , arthiritis, yeast over growth issues, asthma , allergies and sinus problems.. my family is watching my progress. the worst part is my kids have shown symptoms since childhood, now that i recognize it, a.d.d, learning disabilities, skin over growth yeast infections, mood disurbances, depression with meds,headaches, stomach ulcers , excessive gas, gi disturbances, sleep disurbances, sleeping-fatigue syndrome that last for days every 2 months, too many sick days from that. etc i am so glad the mp excists and i can not wait to actually enjoy being in this body. thank you to all on the board and dr. trevor. deb
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deb.premp.3/05.pcrlyme+.d125-71.d25-31.mp4/16/05
benicar,celexa.4/23mino.5/5quer5/30 z+m,lithium
6/29d125-41,d25-26,11/05modph2,12/05125-29,25-30
1/06 ph3,4/06 125-35,25-19;8/06d25-18
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
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Posted: Thu Nov 17th, 2005 21:21 |
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Rough and tumble in youth, I thought I was healthy. Hindsight 20/20.
Early childhood slept a lot during the summer. Loved sunshine, insisted on bright lights, but many days dropped for long naps well beyond toddler years. June/July "strawberry" season 4 or 5 yrs-old first remembered hand rash, nearly scratched fingers bloody raw. Remembered frequently closing eyes to see negative image bright lights of familiar places for quiet time self-entertainment. Skin wounds healed slowly. Skin breakouts from 4th-5th grade on. Always have had "different" sleep/dreams--some frightening, some bothersome, others merely entertaining, all atypical so I said nothing of them. Never knew when a bad night would hit.
Teenage pneumonia and frequent, frequent respiratory problems. Sleep disturbances, sometimes staying up all night to draw. Pneumonia, bronchitis haunted me. Sunbathing with baby-oil slathered girl friends resulted in their tan and my being so wiped out the rest of the day I'd just go home and crash. Glow-in-the-dark white is all I could do. Couldn't run required jr high, high, and college mile runs without burning lungs and bronchial tubes for days of pain and cough. Flat out sick monthly with cramps so bad I could barely move. Was told having children would make this go away. (hah)
Young wife, always tired, took naps when children did. Heavy makeup covered black racoon eyes and skin breakouts. "Strep" flares during early motherhood years meant antibiotics and long recovery. Walking pneumonia during first daughter's wedding. Doctor said hospital, I said just throw antibiotics in my general direction.
Mid life Hemorrhage starting about January and building to July 1999 surgery when hormone therapy failed. New surgery instead of hysterectomy, but by fall, respiratory "flu" and constant cough didn't let up and of course, doctors saw only flu season tired mom even though my feet/legs bulging pitting edema, even arms/hands. Told me to come back when the cough went away. Suspected someone barely passed medical exams, changed doctors and finally, dx Sarcoidosis.
Though the only "Sarcie" dx in bunch, am now acutely aware of 5 generations of Th1 poster children in family. Grandparents, parents, sibs, kids, and grandchildren.
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Aunt Diana
Moderator
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Posted: Fri Nov 18th, 2005 01:30 |
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Hi Jrfoutin
I am intriqued with your family history and wonder if you've been able to convince your family of the possibility they have a Th 1 disease
I am becoming more and more convinced that several of my loved ones have this disorder....but I am afraid they are deaf to this possiblility, I am the "mother-in law" (although I'm really their sister and aunt). They just don't seem to have any time for my illness or it's ramifications, even though I have almost died and am quite debilitated, they just don't see it....but, I see it in them.
Any suggestions? Thank you for any help you can offerl
Thanks and good luck to you.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
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Posted: Fri Nov 18th, 2005 02:28 |
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| Yes. For sake of others I PM'd.--JRF
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Foundation Staff
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| Joined: | Sat Jul 10th, 2004 |
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Posted: Fri Nov 18th, 2005 03:18 |
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Aunt Diana,
Please see:
Some of my family members appear to have Th1 inflammatory symptoms. What should they do?
Best,
Meg
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Chris
Moderator
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Posted: Fri Nov 18th, 2005 16:21 |
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When I was 8 or 9, my folks took me to Mayo Clinic, as I'd had a dramatic personality change. I'd spent that summer sleeping almost all the time.
I never remember having any endurance at any sport I tried. It got worse as I got older, and regular gym attendance didn't help much.
I had lots of trouble with colds and congestion, but it was Minnesota and not that unusual.
The back problems started about 18, which is about when I discovered I could not keep up with the crowd at the keggers.
Perspiration stopped somewhere about 28-30. There was a short period when exercise lead to the sweat glands exuding a crud that would ruin shirts. Then, they stopped working at all.
The real serious trouble started at 33, recurrent high fevers.
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sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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