posted
Hey guys- So, I'm new. I've posted twice, but have mostly been snooping around reading topics and threads, and I have to tell ya'...I'm confused. I apologize for my long post, but I really do have a lot of questions, and you guys really seem so helpful to one another. Not to mention, smart. So, I am going to list my symptoms, and I am hoping that if they remind you of Lyme, then you will tell me. I posted vaguely about them on my first post, but I am hoping someone can help shed light on the specifics. The more I read on here, the more I am convinced it really could be lyme. If so, I'm either relieved to know I'm not dieing, and if it turns out not to be, then I definately am dieing! -sigh- Truly, the search for illness is getting old. I'm beginning to think it's not ever going to get better!
Here goes: I am a 25yo female. First symptoms started in 1999-2000 with HORRIBLE rib pain that radiated from the center of my rib cage to the center of my back, between the shoulder blades. Having experienced natural childbirth, the pain is very comparable. Went to Chiropractor, who diagnosed me with Fibromyalgia. Later had Gallbladder removed in 2000.
From 2000 to now I have experienced shortness of breath, palpatations, and EXTREME dizziness. I seemed to catch pneumonia or bronchitis several times a year, and had generally been feeling tired, unwell, etc... Had echocardiogram in 2001, it was fine. First bloodwork to test for Lupus, and other auto-immune. Came back fine.
Those symptoms persist to this day, however, they weren't bad enough to affect my quality of life with the exception of the rib/back pain attacks that strike without warning. They ground me, literally. I've lived with that for years, despite it getting worse by the year.
Sooo...Here's where the trouble begins. My 2 year old son has Down Syndrome, and of course, I have to deal with all his medical issues. Needless to say, we've been in the hospital with him quite a lot. Last March (Just a little over a year ago) we had a 7 day stay with him in the ICU unit of a large Children's hospital we have here in St. Louis. Inevitably, I came down with some sort of virus while there. It started with what looked like some sort of rash on my hands. it went away after a few weeks, my GP blew it off. Shortly after the rash, the virus took over. It was classified as pneumonia although they didn't see any on the X-Ray. I could barely breathe, my stomach was in terrible shape, I lost 10 pounds (and I NEVER lose) sweats, tremors, you name it. I HONEST to GOD thought I was dieing. It lasted a solid six weeks before I could begin to move around. The fatigue I had is indescribable. I literally could not move. During those six weeks, I was given five different antibiotics, and nothing worked. It was also during those six weeks that I was bit by a tick. Mind you, I live in the woods this was nothing new, but I do remember that the bite didn't heal for almost two months. I don't know if it was the virus or the tick bite, but I have not been the same since. So now, my symptoms are taking over me. In this past year I now have: Unbelieveable headaches. Not migraines, but they feel like my eye is going to explode, or my jaw. Dizziness, to the point where I feel "off balance" if I so much as shake my head too hard. My eyes seem foggy, but are fine according to the eye doc. Went to Neuro last summer, said I was fine. Gave me paxil. Never took it.
Sinus problems developed. I have never had issues in my life, until this past year. There is NO relief. I can't breathe through my nose, my nostrils are always red, there is just no hope for them. Prescribed NUMEROUS antibiotics for them. Nothing worked.
My face, which used to be peaches and cream, now looks like I am Santa Claus. My cheeks are flushed. If not flushed, I look like a corpse I am so pale!
Heart palpatations came back with force. Stabbing chest pain for over a year. Chest is usually tight. Had a repeat echo, EKG, and treadmill stress test. EKG revealed a slight "irregularity" told not to worry about it. Echo showed a small Mitral Valve Prolapse.
Fevers for the past year. I know that temperatures vary, but they are above my normal. I am usually normal at some point in the day, but they do creep up between 99.6 to 100 almost everyday.
Microscopic blood in the urine. I can't see it, but it's there. Had a cystoscopy in September, nothing. Almost always have a UTI, been on numerous antibiotics for that too. I have flank pain and pelvic pain as well. Had kidney ultrasound and abdominal CT scan, didn't show anything. Had my annual women's workup, nothing.
Have had all kinds of bloodwork, never heard anything bad, so I guess it was ok.
Stomach problems from hell. Name every last gross symptom of IBS, amplify it by a hundred, and you have my stomach. Blood in stool occasionally. Told it was most likely viral, or from antibiotics. Colonoscopy in September was fine.
I can't focus, I feel dizzy, I see stars, you name it...I am so out of it.
Various aches and pains everywhere. My neck, shoulders, back, sometimes arms and legs. I am so exhausted I can barely move. I am 25 years old, and my life is literally passing me by because of this. In the past year, my antibiotics total is almost at 20. Probably over that if you consider the antibiotics I take before dental work, of which I've also had a ton of the past few months ago. You know, I am probably not listing the half of it, but to spare you all the "woe is me" I'll quit.
So....I've been reading all over the net about Lyme, and the symptom list isn't near as large as what I've read from actual lyme patients...Or else...It seems the worst of the symptoms are in the beginning of the disease, but I feel like this EVERY SINGLE DAY. And the fevers...Do they really last this long on some people?
Sorry to sound so dramatic, but did any of you actually think you were dieing before you were diagnosed? How has this affected you? My God, I'm young, a Mom, and I just want to LIVE again, you know. Uggghhh...And then I read on here that people have actually died from Lyme- OMG!!! I've asked my GP about Lyme, and he blew me off and told me it was a wastebasket disease. A very gracious member on here emailed me a thread on here about a certain Dr. in Springfield, MO. (I live in MO as well) and the overwhelming praise for him really did make me feel better, and I am going to make an appointment as soon as possible. Is the hype real? It seemed so hearing everyone speak so highly of him, but humor me. I also hear about Igenix (sp?) I have NO IDEA about this, or how to do it, would this Dr. handle all of that?
I am SOOOO sorry for my long winded post, I am just scared, and I have so many questions. Thank's a bunch!
Hi! I'm new here too. I have lots of the same symtoms that you do. My bloodwork hasn't tested positive but I was diagnosed clinically based on symptoms.
Like I said, I'm new too so you'll get more detailed advice from others, but, the best suggestion I can give is get to that LLMD.
I am scared a lot too and totally understand that you feel like you're going to die. I CAN tell you that having all of the symptoms and not knowing what you have is scarier than having the symptoms and KNOWING it's Lyme that's causing them. You still hurt, you're mind is still on vacation, but you finally know.
Best of luck. God Bless. I hope you feel better soon.
Posts: 237 | From WV | Registered: Mar 2007
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what a tough situation- i feel for you - one thng after another it sounds like you are going to see an LLMD soon - this is the best way to find out what is going on -
I hope more people on the board answer you too Here is a list of symptoms from Dr B that I found when - I did not know what was wrong with me let us know what happens with the LLMD will pray for you
Hips, shoulders Unexplained back pain Stiffness of the joints or back Muscle pain or cramps Obvious muscle weakness Twitching of the face or other muscles Confusion, difficulty thinking (toxins ) Difficulty with concentration, reading, problem absorbing new information
Word search, name block Forgetfulness, poor short term memory, poor attention Disorientation: getting lost, going to wrong places Speech errors- wrong word, misspeaking Mood swings, irritability, depression Anxiety, panic attacks
Off balance, ``tippy'' feeling Lightheadedness, wooziness, unavoidable need to sit or lie Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity
Insomnia, fractionated sleep, early awakening Excessive night time sleep (Lyme) Napping during the day Unexplained weight gain Unexplained weight loss Unexplained hair loss Pain in genital area Unexplained menstrual irregularity
Unexplained milk production; breast pain Irritable bladder or bladder dysfunction Erectile dysfunction Loss of libido Queasy stomach or nausea
Heartburn, stomach pain Constipation or Diarrhea Low abdominal pain, cramps Heart murmur or valve prolapse? Heart palpitations or skips (Lyme )
``Heart block'' on EKG Chest wall pain or ribs sore Head congestion Breathlessness, ``air hunger'', unexplained chronic cough Night sweats (Babesia) Exaggerated symptoms or worse hangover from alcohol Symptom flares every 4 wks. Degree of disability
Posts: 259 | From California | Registered: Mar 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear TsSmith,
I can relate although I am not nearly as young as you are.
When I really started to go downhill physically, I was afraid to go to sleep at night.
I knew I was dying and my greatest fear was that my two young
Children would find me dead in bed in the morning.
I am so sorry for your pain and for where you are.
I've been there.
I was told that I could not possibly have Lyme...
We don't have that here.
I knew when I googled my symptoms that it was either Lupus or Lyme.
Knew it wasn't lupus....negative ana...
Finally found a duck to draw Western Blot.
This was prior to my finding this board.
Please go down the Lyme symptom list.
If you have ever had/have one of those symptoms
Mark it off.
I had 54 out of 75....
Then you need to find a Lyme Literate Medical Doctor.
Wish I had done that first, but....didn't know any better.
Now I do.
You can get Igenex to send you a test kit. Call them.
It costs 190.00 for Western Blot IgG and IgM.
If you are considering testing your husband and children, they do offer family discounts.
Ask them about that while on the phone.
Not only was I dx. with Lyme, my husband and neighbor were too.
I am currently awaiting childrens Igenex test results.
Hang in there. You have made your way to the best place possible....lymenet.
The feeling of dying.....oh yeah I can relate...
Sending you calming thoughts and prayers to go in the right direction for you
And your family.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
tsmith Ill let you know my symptoms and how many years this went on.
In 1988 I was bitten by a tick while at work {{forestry}} it wasnt even attached long pulled off rather easy but it had a grip didnt know what I know now about ticks and there saliva and lyme-coinfections.NO Bullseye
Anyway I had a slight fever that fall summer flu kinda no diarrhoea felt fine afterwards. Then a couple of months later I had a raging fever 105 and over one night.Got over it thought I had the flu.
Well I continued over the next 14 years to be bitten over and over at least 100 bites known 15 or 16 very well attached ticks never once did I have a classic bulls eye bite mark nothing not even red .
Now through all those years I was tested by 4 different hospitals over and over tested at least twice a year some times three times allways negative test results!!!
The point is the tests were bad then and not much better now. Because of the way the spirochete reproduces in our bodies and also its ability to hide from our immune system immeaditly after entering our system.
I finaly after through all those years couldnt take all the problems and searched out a LLMD thats a Lyme-literate MD doctor who has treted lyme before and understands its complexities.
I urge you to find one Dr C in M is pretty good.
The stuff that I remember happening to me my symptooms were.
eyes messed up blurred vision on and off, then eventially 20/15 vision went down to having to use 2.75 magnification to read anything. also fevers high and low ones on and off months apart sometimes every couple weeks really no pattern to fevers but alot of them over the years. And tingling fingers on and off tips would go numb tip of nose did that to. acheing tired started waking up when I would hit rem sleep usually 3am in the morning. generaly tired ,joint pain in wrist,then shoulders backpain,then knees,then tore cartilge in left knee,sore feet achilles tendon hurt bone spurs on hills,more joint pain ankles,elbows,just about every where at different times it migrated. sweats ,shortness of breath then finally couldnt even think, also nightmares then ZNo dreams at all.Heart palpitaions,bad choices dicisions etc not myself, sinus problems and increase in allergies etc.
It hits your body wher ever your the weakest it shows up first.
Please see the LLMD and get on abx's and strt tretment you may wait but the disease dosent!
Read newbie links and get treated.
dont forget tret coinfections the odds are you have other infections taking off too. Good Luck
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME!*)*!)!*) Sounds like Babs or Bart or Ehr as much as straight Lyme- but could be something else entirely- but yes- could be!!!
You need a thorough Differential Diagnosis!!! Find a good LLMD*!*)!*!)! Like the one you got sent info on- he is a good LLMD*!)*)!*!)! Best wishes, Sarah in CA
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Amanda, as you have had pneumonia and bronchitis make sure you get checked for Chlamydophylla Pneumoniae, this is an airborne co-infection that is being found with lyme and is also very difficult to treat .....but the good news is that the Cpn antibiotic protocol works for both.
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi TSmith - it sounds like co-infections to me along with Lyme.
I, too, have a son with Down syndrome. He was 4 when I contracted Lyme and is now 8. I could sometimes handle him when he was little but now that he's gotten so big I can no longer even put a shirt over his head. I am very weak.
I have 2 younger sons and my husband, too, and every one of us has suffered terribly as a result of Lyme and Down's in our family.
It has gotten to the point that my husband and I can no longer care for our son with Down's at home and he will soon be living with a "family care provider" to get the care he needs.
Of course, I'm very sad that it's come to this but the Lyme just won't give us a break. I AM better than I was at first, but it has been a costly, slow process. Now I'm really deconditioned and still very disabled.
A LLMD will help you so much I'm sure. He/she will help you sort out the confusion. Learn all you can and don't let the ducks hurt your feelings too much (they used to make me cry all the time!). In fact, I've learned to stay away from them as much as possible!
Good luck, and I'm thinking of you!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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posted
Hi, I'm pretty new here too, female, 47 and from St. Louis. I'm here almost daily, looking around, trying to understand this monster; Lyme disease.
I've had that rib area/side pain you speak of, it's horrific. When it happens to me, it feels like being stabbed, again and again. It so completely incapacitates me that toughing it out isn't an option. Those times find me lying in bed, writhing.
And that's from someone who's gotten pretty tough about pain: I have lots of different kinds, neck/back, joints (hands & knees mostly), intense "jolts" of nerve type pain, etc., etc., it varies, but at no time since I got sick (Jan. 2004) have I been pain free.
I've only posted once asking for help finding a llmd. I was referred to that Springfield doc and will have my appointment on May 1st. Thank you, btw, to all of you who sent me newbie info. and encouraged me to see Dr. C.
It was hard to make the decision to go. I can't afford it, at all- I haven't worked in a year and my health insurance ends in 2 months. I've seen so many doctors...the "absolute best" in STL supposedly. Before every appointment I hoped that this new medical "genius" I would be seeing would be someone that could actually help me; just to be poked and prodded and tested and prescribed and sent on my way without any impact on symptoms or disease progression.
I'm desparate and scared. I'm praying Dr. C really is differnt and can help. I have a tiny smiggen of hope left, it's all I'm hanging on to.
So...I can let you know about my experience with him after I go.
Feel free to send me a pm if you like, I can give you my phone neumber if you need someone local to talk to (vent to). It may help to have someone that understands about the hell you're going through. My daughter is almost grown, it must be very hard to care for yourself at all with all you have to do raising your son. I know how mom's are, they always but their own needs last.
Posts: 2 | From St. Louis, MO | Registered: Feb 2007
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posted
To all the new people who are sick here -- it's best to get to an LLMD.
One product that's helping with my Lyme symptoms is mangosteen juice. It's an anti-anflammatory and anti-oxidant juice. It cleared up my sinuses, it's restored my eyesight to normal focus and gotten rid of eye pain, it keeps my bowels regular, it stopped my gums from bleeding, etc.
There are various brands out there in healthfood stores, online and a multi-level marketed one. The one I like to drink is Ultra mangosteen; it has 70 minerals and vitamins added to it..
If you try it, go slowly at first, since it can work! And drink a lot of water.
Posts: 13116 | From San Francisco | Registered: May 2006
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-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Dear Tsmith,
Yes, it sounds like classic lyme disease -- in my experience.
In the year leading up to my diagnosis and starting treatment with an llmd, I though I was going to die too. Even though I am in my mid-40s and have great health and longevity in my relatives, and no other risk factors.
I hope you will get to a lyme literate doctor soon! The feeling that you are going to die will go away once you start treatment, and though it won't always be easy, you will get better. Take care.
Posts: 2557 | From home | Registered: Aug 2006
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posted
To all of you new people, if you truly do think you might have lyme disease run---don't walk to the nearest good doctor, Those of you in Missouri-- I go to Dr. C in Missouri. He is the best doctor I've seen and so nice. If only I could have known about him 43 years ago when I first got sick!
If you have to wait a long time to get into a doctor you can order the tests from the lab and have that done before you go.
1: Chin Med J (Engl). 1992 Jul;105(7):560-3. Related Articles, Links
Borrelia burgdorferi infection may be the cause of sarcoidosis.
Hua B, Li QD, Wang FM, Ai CX, Luo WC.
Naval General Hospital, Beijing.
Serum antibody to Borrelia burgdorferi was measured in 33 patients with sarcoidosis which was confirmed clinically and pathologically. The results showed that 81.8% of the patients were positive for anti-B. burgdorferi antibody. In addition, a strain of B. burgdorferi was isolated from a patient's blood. Fifteen patients received ceftriaxone 2g per day or penicillin 12 million U per day. The antibody titers of the patients decreased to nearly normal levels rapidly. Serum angiotensin converting enzyme (SACE) turned to normal range after the treatment. According to the findings mentioned above, we consider that B. burgdorferi infection may be the cause of sarcoidosis and sarcoidosis might be a specific type of Lyme disease.
MeSH Terms: Adult Antibodies, Bacterial/blood* Borrelia burgdorferi Group/immunology* Borrelia burgdorferi Group/isolation & purification Ceftriaxone/therapeutic use Female Humans Lyme Disease* Male Middle Aged Penicillins/therapeutic use Peptidyl-Dipeptidase A/blood Sarcoidosis/blood Sarcoidosis/drug therapy Sarcoidosis/microbiology*
Substances: Antibodies, Bacterial Penicillins Ceftriaxone Peptidyl-Dipeptidase A
PMID: 1333393 [PubMed - indexed for MEDLINE]
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10: Xu Z, Ma D, Luo W. [Detection of Borrelia burgdorferi DNA in granulomatous tissues from patients with sarcoidosis using polymerase chain reaction in situ technique] Zhonghua Jie He He Hu Xi Za Zhi. 1996 Oct;19(5):279-81. Chinese. PMID: 9596840 [PubMed - indexed for MEDLINE]
11: Lian W, Luo W. Borrelia burgdorferi DNA in biological samples from patients with sarcoidosis using the polymerase chain reaction technique. Chin Med Sci J. 1995 Jun;10(2):93-5. PMID: 7647327 [PubMed - indexed for MEDLINE]
12: Guan S, Yin G, Han S. [Detection of anti-BB antibodies in human sera by VIDAS system] Zhonghua Liu Xing Bing Xue Za Zhi. 1994 Dec;15(6):368-71. Chinese. PMID: 7874709 [PubMed - indexed for MEDLINE]
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15: Arcangeli G, Calabro S, Cisno F, Zambotto FM, Drigo R, Ferraresso A. Determination of antibodies to Borrelia burgdorferi in sarcoidosis. Sarcoidosis. 1994 Mar;11(1):32-3. PMID: 8036340 [PubMed - indexed for MEDLINE]
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19: Hua B, Li QD, Wang FM, Ai CX, Luo WC. Borrelia burgdorferi infection may be the cause of sarcoidosis. Chin Med J (Engl). 1992 Jul;105(7):560-3. PMID: 1333393 [PubMed - indexed for MEDLINE]
20: Montemurro L, Rizzato G. Is sarcoidosis a borreliosis? Sarcoidosis. 1991 Sep;8(2):134-5. PMID: 1669979 [PubMed - indexed for MEDLINE]
21: Isogai E, Isogai H, Kotake S, Yoshikawa K, Ichiishi A, Kosaka S, Sato N, Hayashi S, Oguma K, Ohno S. Detection of antibodies against Borrelia burgdorferi in patients with uveitis. Am J Ophthalmol. 1991 Jul 15;112(1):23-30. PMID: 1882917 [PubMed - indexed for MEDLINE]
22: Jacob F. Could Borrelia burgdorferi be a causal agent of sarcoidosis? Med Hypotheses. 1989 Dec;30(4):241-3. PMID: 2615685 [PubMed - indexed for MEDLINE]
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
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I also hear about Igenix (sp?) I have NO IDEA about this, or how to do it, would this Dr. handle all of that?
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