It has been over a year now that I have been struggling with my "Unexpected illness", since the day I gave birth to my beautiful daugher.
She runs around the house and I cant get up to chase her or even play with her.
My days and nights are spent in bed in my PJ's wishing and hoping that I could live the life I once knew so well, the life of a normal functioning human being
A life that was Bright and full of excitment and ambition
I used to dance and sing and perform on stage, and now I cannot even get out of bed...and I dont know why??
I ahve been bedridden for the better part of a year now. I can't walk that well and I am plauged with weird neurological symptoms that make it hard to walk or function or get out of bed...never mind all the other symptoms I go through on a daily basis.
This "THING" has not let up for a year, no good days, just BAD days.....and WHY....Why am I so ill just from having a baby??
What was supposed to be the best thing that ever happened to me has become the fight of my life.....I cant help but cry everyday. And now my first born child is struggling too......and I CANT HELP HIM...Talk about anger, frustration and desperation.
I miss out on everything, I lay in bed while the family goes out on outings because mommy can't get out of bed. My last atttempt at an outing was over a month ago and I had to use a wheelchair because I couldnt walk...I am 25 years old.....I dont get it.....I used to run and dance and workout 5 days a week, and now I cant barely walk
No answers, no hope, and feel like I am fightting a lost battle. ALl I wanted was a family, a good life....A shot to give my children the very best.
As the days go on and I am still sick, living in fear and wondering what the future holds.......I lose more and more hope.
I want to be a mommy and take care of my kids. Idont want to leave my kids.....I want to be here for a long time......but the impending doom swirls around my head on a daily basis.
I now have a finace who has to take care of every responsibility in and out of the house and although I know he loves us so much...I am sacred he will eventually get sick of being the maid, the cook, the caretaker, the dad, the mom , the worker and finally get sick of not seeing the fun loving,exciting person he met 7 years ago. The person he wanted to marry but cant now.
I am sorry, but I needed to vent or I just might go crazy
I know this sounds like a pity party, but I am on my last string and it is starting to break.
I will never understand how a previouly healthy woman becomes so ill with every "autoimmune" disease under the sun from giving birth to a beautiful baby.
Thanks for reading and letting me get some things off my scatterted brain.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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You cannot expect to get better or help your children/fiance without the proper care of a LLMD.
As of this morning I am praying for you and your family to receive the care you need.
Blessings, Tic
-------------------- Adversity is the diamond dust heaven polishes it's jewels with. � Robert Leighton
Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time � all faiths welcome! Posts: 309 | From S.E. Mass | Registered: Apr 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It sounds like you not only need someone who can empathize and listen to you, but also someone who knows a thing or two about medicine and beyond. Message me, or e-mail me at [email protected], or perhaps AIM me, or whichever IM you want:
I've had 21 years to study medicine from my bedroom, up until I found answers. While I am not cured, nor necessary happy entirely, I am much better than I was, and I still have a lot of ideas left to get me the rest of the way. Like you, I've been to the end of the precipice. I begged and begged god, and others around me to "help" me. I begged the doctors, I studied, I really suffered unbearably. For me to say that is quite a severe admission to the community that there are illnesses which can break even the strongest will and the strongest human body. Like iron, even that can be bent and broken.
Given this, I can probably help you get information and other resources, even an ear and some solid advice both emotionally, socially and hopefully healthwise. I've walked the road of disability, of losing my fiance, of losing my friends, my family, my education, my job, my entire life. I'm 30 years old, so I can relate age wise, and if you do the math (Which I imagine you probably can't do, which you find disturbing within the last year), then you'll see I've been sick since age 9, and only recently in the last 6 years begun to figure out exactly what's happened.
Reach out, and I'll be as helpful as I can. If you don't reach out, I'll wait patiently whether you eventually do or don't.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Tic CHick...Thank you for keeping me in your prayers! That means alot, also I am seeing my first LLMD on Wednesday but feel it may be another dead end.
Metallic Blue....I am so sorry to hear that you have been struggling so long. I can definitley understand losing friends, family ETC....It is no fun and avery hard pill to swallow.
Thank you for being so nice as to want to reach out! I also identify with the endless research we have to do. EVeryday I' am on my laptop from bed or couch researching everything I can to get out of this mess, or just to figure out WHAT is wrong with me.
Do you yourself have a diagnosis??
Be well everyone!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Unexpected, have you seen an LLMD yet? I think you will really get answers and hope then.
I have a similar story to Blue, except I asked God to either make me better or let me die as going on like this was not an answer. It's a hard fight, but one you have to do .... you're really left with no choice.
You need proper medical care, and at this point, that would be with an LLMD. If your child has Lyme, I would guess it's highly likely that it's at the root of your problems, too.
Things will look up the day you are in your LLMD's office and he says, "Wow, you're really sick, let's get you better." Just hearing a doctor admit how ill I was made me feel better already.
Now I am mostly functional ... my down days I can still feed myself and go to the grocery. My good days, I am totally normal. A year ago I was bedridden with pain and fatigue.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I feel for you terribly, I do know about being bedbound as until I was diagnosed I was in bed for 4 Years - 7 years in total undiagnosed.
like you my immune system when haywire and I started to produce every antibody known to man - Thyroid,adrenal,ANA antibodies etc - its just your immune sytem going in to overdrive trying its best to fight the infection.
Are you under a good LLMD? for me it took firstly getting all my hormone in to sync and then fighting the infection, I am not saying its easy as its not but with the correct treatment you will slowly get back on your feet - Remember I was in bed for years and now I am up and around every day - no where near normal yet but out of the bed and doing some normal things.
So please dont lose hope, get under the right LLMD and you will regain your health slowly.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: Tic CHick...Thank you for keeping me in your prayers! That means alot, also I am seeing my first LLMD on Wednesday but feel it may be another dead end.
Who are you seeing? I have a list from all over the world with LLMDs and I record what every patient says about each one. So I can often help people like you know what patients from around the world have to say about a particular doctor before they've even seen him/her.
quote: Metallic Blue....I am so sorry to hear that you have been struggling so long. I can definitley understand losing friends, family ETC....It is no fun and avery hard pill to swallow.
I'm a badass, I can take a severe beating. I've done my share of crying though. You know it's bad when a guy like me cries. So I know the suffering others go through.
quote: Thank you for being so nice as to want to reach out! I also identify with the endless research we have to do. EVeryday I' am on my laptop from bed or couch researching everything I can to get out of this mess, or just to figure out WHAT is wrong with me.
Well that's the thing, since I've been misdiagnosed and or diagnosed with so many things, I have a thorough knowledge in autoimmune disease, psychiatric illness, neurological trauma and pathology, as well as infectious diseases. If I don't know something, I know how to find it, and if I don't know how to find it, I know the people that can.
The key to finding the answer is to cross reference the illnesses which fit your symptom pattern, and or changing symptom pattern. misdiagnosis.com can be useful, webmd, as well as wikipedia for finding thorough summaries of each condition in question. Because "people" write the articles, you get a direct account from patients, and usually they support their statements with studies and credible sources.
For example: If you have autoimmune disease diagnosis, you cross reference all autoimmune diseases which share the same traits. What about psychiatric illnesses, or significant fatigue or exhaustion? Only specific inflammatory conditions have psychiatric conditions, combined with exhaustion. Inflammation is primary, immune dysfunction is obvious, so what can cause inflammation? Environmental factors, genetic factors, infectious disease factors, trauma.
Were there symptoms prior to giving birth? No? Maybe? Yes? Which conditions can be triggered by trauma? Infectious diseases are a strong possibility, but not environmental, autoimmunity can be triggered by trauma as well. Child birth is a form of trauma, now what about significant alterations to immunity, hormonal shifts can trigger changes in immunity, weakening, and thus allowing a prior infection which was controlled and or dormant via immunity, to activate.
This is the type of process of exclusion that helps lead to a shorter list of potential conditions. Are the tests accurate for this shorter list of conditions? Is it possible the condition is unknown to medical science and has not yet been discovered? Were you traveling prior to or around the time of illness, where do you live or spend your time? Is your environment endemic for any particular condition? Have you used any medications prior to illness or around the time of illness?
Leave no stone unturned and the picture gradually begins to become clearer as each diagnosis drops by not holding up as the facts accumulate.
quote: Do you yourself have a diagnosis??
I have more than 15 diagnosis. I can't even remember all of them! Anxiety Disorder, Bi-polar disorder, Crohn's Disease, Chronic Fatigue Syndrome, Obessive Compulsive Disorder, Fibromyalgia, Esophageal Reflux Disease, Gastritis, Attention Deficit Disorder, Post Traumatic Stress Disorder, Anorexia, Arthritis, Neuropathy, Hypoglycemia, Thyroid Issues, chronic hypothermia.
I could go on and on. I have a diagnosis for just about every symptom affecting every part of the body. That's why it was so hard for me to figure out what was causing the issue. The condition had vague symptoms! I'm still not entirely 100% sure if any other infectious diseases are present.
If you're going to See Dr. D in Boston or Falmouth, we have a lot to talk about.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
One last thing, I am not inclined to assume Lyme Disease or other tick borner illness when I advocate for any particular patient. If the facts add up to Lyme, and it's glaring me in the face based on patient reports, the persons symptoms, their labwork, their history, their family, exposure, time-frame, travel, medications, prior doctors seen, diagnosis, and onward -- then BOOM, it's obvious it's in that framework.
Most Lyme patients (With or without co-infections) can usually sniff another patient from a mile away. We're like two dogs sniffing each others asses. We know when we see another case. It's like buying a new car, and suddenly everywhere you drive you see the same car drive past you.
It wasn't until very recently that I really woke up, even with my own case, but that awakening has led to some really great leaps forward in my thinking and perspective. With undiagnosed illness, you must be open minded, compassion and humble in understanding that you DON'T know, until you know. It's critical, and most Lyme patients think exactly like that. All the good folks here know that, and they've been a great help to me in the last month or so.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
METALLIC BLUE: Were there symptoms prior to giving birth? No? Maybe? Yes? YES< I HAD SEVERE ANXIETY< BROKE OUT IN RASH ALL OVER BODY < DEVELOPED INTOLERANCE TO ALCOHOL Is it possible the condition is unknown to medical science and has not yet been discovered? WELL I REALLY HOPE NOT OR I'M SCREWED! Were you traveling prior to or around the time of illness, where do you live or spend your time? LAST TIME I TRAVELED WAS IN 2005 TO HAWAII Is your environment endemic for any particular condition? I LIVE IN MASS I GUESS ANYTHING IS POSSIBLE, I USED TO GO CAMPING EVERY YEAR< HAVE DONE FILMING IN THE WOODS...
Have you used any medications prior to illness or around the time of illness? I HAVE NEVER BEEN ON ANY TYPES OF MEDS PRIOR TO ILLNESS ECPET A @ WEEKS TRIAL OF CELEXA>>>>I AM NOT A FAN OF MEDS O ALWAYS STAYED AWAY FROM THEM
I'm still confused......I may never know what is wrong with me. I find it hard to believ that I could have Lyme when I was bitten at the age of 12 and possibly 17 while camping in NH.
My mom has FM and CFS, My fiance is now having symptoms, My son was juts DX's with Lyme, even though I am still looking inot those results. I dont want to waste 600$ on an LLMD just to hear that what I have is unknown and I need steroids.
I ahve been given these Possible Dx's: Lupus, MS, Sarcoidoisis, Vasculitis, RA, Generalized Anxiety disorder, Hypercondriosis, AND MANY MORE....
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by UnexpectedIlls: I find it hard to believ that I could have Lyme when I was bitten at the age of 12 and possibly 17 while camping in NH.
I was bitten at the age of 10. I had random symptoms through the years as you describe .... all were around time of stress, so I thought it was the stress.
In fact, stress can be a trigger for Lyme symptoms.
Alcohol intolerance really seems to be a common symptom ... don't discount that one.
I got diagnosed 34 years after my tick bite. It is possible. I would spend the $600.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: YES< I HAD SEVERE ANXIETY< BROKE OUT IN RASH ALL OVER BODY < DEVELOPED INTOLERANCE TO ALCOHOL< But I was in college and was in a Musical with a very intense lead role and attributed it all to stress from school work, being a mom, and doing a very intense show that I put my heart and soul into with long rehearsal hours.
Alright, that's useful information.
quote: Is it possible the condition is unknown to medical science and has not yet been discovered? WELL I REALLY HOPE NOT OR I'M SCREWED!
Not necessarily, remember there are a lot of symptomatic treatments to improve the quality of life of a person, even if we don't know the exact cause. That however is a totally different story anyway because as it stands we start with conditions that "do" exist.
quote: Were you traveling prior to or around the time of illness, where do you live or spend your time? LAST TIME I TRAVELED WAS IN 2005 TO HAWAII Is your environment endemic for any particular condition? I LIVE IN MASS I GUESS ANYTHING IS POSSIBLE, I USED TO GO CAMPING EVERY YEAR< HAVE DONE FILMING IN THE WOODS...
Again another very useful piece of information. Hawaii has some various illnesses, but none of which are known to fit the pattern you've expressed.
quote: Have you used any medications prior to illness or around the time of illness? I HAVE NEVER BEEN ON ANY TYPES OF MEDS PRIOR TO ILLNESS ECPET A @ WEEKS TRIAL OF CELEXA>>>>I AM NOT A FAN OF MEDS O ALWAYS STAYED AWAY FROM THEM
Great, so we've excluded any damage done via medications. Celexa would not induce these symptoms.
quote: I'm still confused......I may never know what is wrong with me. I find it hard to believ that I could have Lyme when I was bitten at the age of 12 and possibly 17 while camping in NH.
While I'm not going to say it's a tick-borne illness, I will say it's so incredibly easy to have been bitten and not known it, nor experienced any visible sign of being bitten. We're talking about creatures -- arachnids specifically -- which can be so small that many people can't even see them, and if they do notice them, it can be assumed as a skin discoloration, or a speck of dirt.
quote: My mom has FM and CFS, My fiance is now having symptoms, My son was juts DX's with Lyme, even though I am still looking inot those results. I dont want to waste 600$ on an LLMD just to hear that what I have is unknown and I need steroids.
Your mother has FM and CFS. Those two diagnosis together are immediately suspect of two major areas of importance. Endocrine, and infectious. The latter with the more weight. Viral and bacterial are likely the primary causes. The interesting thing about bacterial infections is that many still have not been discovered.
quote: I ahve been given these Possible Dx's: Lupus, MS, Sarcoidoisis, Vasculitis, RA, Generalized Anxiety disorder, Hypercondriosis, AND MANY MORE....
Those diagnosis are highly indicative of a widespread disease of an infectious nature. Exposure to radiation, poisons, or other materials would not instigate a pattern of that nature by themselves.
That's another important tip, human beings are potentially able to have "more" than one illness at the same time. A person could sincerely have overlapping illness, one which is biological and one which is psychological, or -- one can be confused to be the other, when in-fact it's not. There are multiple lines of thought in the larger web, but they all lead to a center eventually.
All "problems" have answers. It's just a matter of finding it. Believing in the possibility gives you the ability to generate the energy to keep going until you've exhausted every possible route that you are capable.
Which tests have you performed, and do you have the results available, such as blood work, scans, reports, dictations? I would only care about any abnormalities via internet.
If I was present obviously I would look at the normal ranges too -- these are important, as what is normal for you could be in the higher or lower range than what is actually normal. So say you would normally have a number of 100 for HDL, but you're showing 60, if I saw a pattern emerge in the numbers, even though they were normal relative to each other - it would send up red flags.
Most doctors do not even have the time to give blood work like that a second thought.
Other patients on this board will also read what you say as you answer questions and they'll likely be very supportive or knowledgable in advising.
You most certainly need, or should have had extensive blood work done by an infectious disease specialist, and those test ought to be scrutinized do to their inaccuracy for some of them. Not all tests are gauranteed, just because they're positive or negative.
[ 19. April 2008, 06:07 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
WOW MB, you really know your stuff...Very smart!
I have had so many tests: I'll list a few
1 MRI of my brain and neck, veins and arteries" NORMAL 2 Cat scans of my head: NORMAL 4 Cat Scans of my chest: NORMAL 7 Chest XRAYs: NORMAL 2 Ultrasounds of stomach and uterus: NORMAL 3 Echocardiagrams and stress echo's: NORMAL Holter monitors, EKG's, Event Monitors, all normal except showing tachycardia and skipped beats.
I have had abnormal blood tests too: Elevated liver tests, Elevated Neutrophils and WBC's, + ANA, + RF, ELevated ACE, VERY HIGH CRP, Negative Lyme tests through Quest,
This just gets more and more confusing......
I have MANY symptoms from that list...If you find my post from a couple of weeks ago, I think it many be on page 4 it says "New To Board" I listed many of my symptoms there....But I ahve about 32 or more symptoms and they are defintley from that list.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Were other infectious diseases tested for?
quote: I have had abnormal blood tests too: Elevated liver tests, Elevated Neutrophils and WBC's, + ANA, + RF, ELevated ACE, VERY HIGH CRP, Negative Lyme tests through Quest,
This just gets more and more confusing......
Where were these tests above performed? Do you have the results of the negative test from Quest and the actual numbers and range for the abnormal tests listed above? Scan them if possible, and or post the individual numbers if you have them.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
MetallicBlue...I was never tested for any infectious diseases
ANA-!:40-1:80 pattern speckled
Rheumatoid Factor-113 (()-14) Has gotten higher since last year
ACE-73 (9-65) Not elevated the second time taken
CRP- 16.5 (0-7.9) has gone higher and higher since last year
All other LFT and WBC' have been sporadic
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Thanks for replying. I am starting to feel exactly that way myself and wish I could just find the answer.
How did you figure out it was Lyme?
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I had many of the symptoms on a list I found on the internet. I had IGeneX send a test kit to my house, then took it to my doctor to run the test.
She said she would only because I had Somatization Disorder and it was important for me to get all these other ideas out of my head. Grrr.
My test had 8 positive IgG bands. She still told me I did not have it. You MUST get copies of all your blood work for this reason!
I already had an appt. made with an LLMD before I even got my test results back because I knew the testing was not always accurate.
If you have that many symptoms of Lyme, I would definitely see an LLMD to at least get it properly ruled out. LLMD's get in so much trouble anyway, they don't want to treat someone who doesn't have it. Plus, they do such a thorough differential diagnosis that if you don't have Lyme, they will find out what you do have.
Typically, even if it is Lyme, there is a complicated web of associated illnesses since your immune system is in such a weakened state. I had heavy metal toxicity, low thryroid, bacterial dysbiosis of the intestine, plus the coinfections of bartonella and babesia.
It's most likely not just one thing making you feel this way. An LLMD can help you sort it out.
In theory, and infectious disease doctor should be able to help you, but unfortunately they have their heads in the sand when it comes to Lyme Disease. That is why they have been brought up on anti-trust violations in the state of CT for their new Lyme treatment guidelines. I'd see an LLMD.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: MetallicBlue...I was never tested for any infectious diseases
ANA-!:40-1:80 pattern speckled
Rheumatoid Factor-113 (()-14) Has gotten higher since last year
ACE-73 (9-65) Not elevated the second time taken
CRP- 16.5 (0-7.9) has gone higher and higher since last year
All other LFT and WBC' have been sporadic
This is a strong indication of an inflammatory response, obviously autoimmune in terms of symptom pattern diagnosis (The tests and symptoms match, but these can have a larger illness causing them), however, why is the body producing these results, with abnormal LFT and sporadic WBC's and a fluctuating ACE-73, and why are all other tests negative?
This is a strong correlation for a Rheumatoid Arthritis, or Lupus, diagnosis but both of these can easily be confused with infectious diseases, viral, especially Mononucleosis, or a chronic persisting infection.
Other autoimmune diseases can produce this pattern too, however when you look at the larger picture, these diagnosis would be absurd to treat with steroids or immune suppressants even if they were in actuality fact.
And the reason being, that you can't factually define autoimmune diseases of this nature as "fact" in conjunction with Fibromyalgia or Chronic Fatigue Syndrome -- because they lack a causative agent which overlaps with a number of infectious diseases which test poorly, including (drum roll please.....tap tap tap) Chronic Lyme Disease and thus this justifies a treatment trial with antibiotics or antivirals in order to form what is known as a therapeutic probe.
A very limited number of infectious diseases produce what is known as the Jarish-Herxheimer reaction, a pattern in which when antibiotics are given to a patient with particular spirochete infections, as well as other bacteria from the mycobacterium family (These are the most well known), that they produce a significant worsening of overall symptoms between the 1st and usually 4th week, with most people experiencing it nearly to the 14th day.
A cycline antibiotic would make for a useful probe. Doxycycline, or Tetracycline would be preferred. Tetracycline would likely be the better candidate, though you would experience upset stomach possibly, and if incapable of using Tetra, Doxy would be the alternative.
Any test an ID would do (infectious disease) can be done by most LLMD's based on your history. The pattern indicates all the factors necessary for a diagnosis of Chronic Lyme Disease.
You may have a co-infection of perhaps a viral or parasite infections, and you may have comorbid disease (Other illnesses resulting from the core illness of this infection) -- and it's possible you had these as an unassociated illness, or directly in conjunction with what appears to be your current infection.
quote: 1 MRI of my brain and neck, veins and arteries" NORMAL 2 Cat scans of my head: NORMAL 4 Cat Scans of my chest: NORMAL 7 Chest XRAYs: NORMAL 2 Ultrasounds of stomach and uterus: NORMAL 3 Echocardiagrams and stress echo's: NORMAL Holter monitors, EKG's, Event Monitors, all normal except showing tachycardia and skipped beats.
The Tachycardia and Skipped Beats fits in with the larger profile as explained above (Including symptoms) and indicates a dysfunction of the nervous system not just the immune system. Unless of course you've had heart problems previously, which I suspect you probably did, and experienced them as mild or moderate palpitations during anxiety or stress.
The Elevated liver tests, Elevated Neutrophils is another sign of infection in conjunction with these numbers. With abnormal blood testing, and high Neutrophils, did you note any bands on that Western Blot? If you have the results, look for kd41. Are "any" of the bands positive? Patients usually report none, or kd41 with Quest in late stage infection.
I'd bet the farm that you have a third stage infection of Lyme Disease which you had prior to your pregnancy and a probe of antibiotics would be warranted in conjunction with a broad spectrum infectious disease work up involving all the known bacterial and viral infections which fit the same profile as Borrelia Burgdorferi.
I suspect based on your symptoms, and test results that you've had it for at least 10-12 years.
Take all this as you will, it may help you or may not. I am not a health professional in any way shape or form, I am only a patient like yourself who has been ill and had a lot of experience dealing with these problems.
If you need help finding doctors, let me know. If you're seeing someone in the $600 dollar range I have a decent idea of which direction you're going, and it's good.
[ 19. April 2008, 06:06 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Geneal, Thank you so much for the kind words! I am so happy that you are starting to see improvement, I hope I will too.
Metallic Blue:
Thank you for the analysis, although I ahve to tell you right now I am having trouble following and had to read it over a couple of times and still find myself getting lost.
I hate that that happens now ...
Also, I never had any heart problems before my pregnancy ever, I don't ever remember having palpitaions. The heart stuff started in the third trimester of my pregnancy.
I'm sorry I am not comprehending things right now....Its weird that I am having this trouble. I have noticed this a lot lately. SOmetimes I have to read the same line over and over and sometimes I cant find the next line to a sentance and keep goign back to the same one beofre I can find the next one.
Yes, I am seeing Dr P in CT on Wednesday and I am just a mess about it.
One more doctor, and so worried that I have an "INCURABLE" illness like every other doctor has told me. I dont want to be on steriods but that is what I have been told I need...I refuse.
I have not had a WB done thorugh IgeneX, only tested through Quest twice which was negative.
MEtallic, I am sorry I havent quite understood everything you have been saying, but I am so appreciative of you takign your time to help me out!!!
Shandy
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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bettyg
Unregistered
posted
shandy, did you ask me for my newbie package of 117 pages? if not, PM, private message me, and ask for it; i'll send it to you. it's 60% completely reorganized with a table of contents so you have an idea what is in there vs. thumbing thru page after page!
blue, may i suggest you edit some of your informative posts to shandy? they got quite LONG SOLID BLOCK TEXT, vs. SHORTER paragraphs to help her/us comprehend in order to read.
shandy, yes, we hate this not being able to comprehend/read without rereading OVER AND OVER!
YES, your llmd is good from what i've been told! just go in with an OPEN MIND....HE'S GOING TO HELP ME GET BETTER SO I CAN TAKE CARE OF MY KIDS!!***********************************
in my package, PREPARING FOR 1ST LLMD VISIT; be sure to print that off too!
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posted
Hi Shandy - sorry to hear of your plight. I am glad that you are going to see an LLMD. Please don't go into the doctor visit with a negative attitude if you can help it at all.
It sounds like you have seen doctors in the past that do not know how to properly diagnose and treat Lyme. You need to see a good LLMD in order to get the proper tests, diagnosis and treatment. Alot of your symptoms sound like they could be Lyme.
Lyme can be in your body a long time and then after a stress, it can start to cause all kinds of problems. Many people have contracted Lyme, but they don't know where they got it from. Lyme ticks are very small and it would be easy to miss one that was attached and then fell off. If you spent time in the woods, you could very well have Lyme. And you are in the NorthEast - where it has all spread from.
Hang in there. You will find help.
Robin
Posts: 276 | From Maryland | Registered: Dec 2006
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posted
Thank you everyone so much for your support and help.
I hope that my appointment Wednesday with Dr. P will bring me and my family some much needed answers and hope for the future.
Be well
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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METALLlC BLUE
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posted
quote: Metallic Blue:
Thank you for the analysis, although I ahve to tell you right now I am having trouble following and had to read it over a couple of times and still find myself getting lost.
BettyG, sorry about the highly verbose posts, I have editted to resolve the large paragraphs.
Shandy, I have a habit of going into massive detail sometimes. I'll simplify things in summary by saying, everything does point to a ticke-borne infection. I'm certain you have Lyme disease, and that is why you're suffering as you are. Again I'm no doctor.
quote: I hate that that happens now [Frown] ...
You should see me try to do Math. I've overcompensated for huge deficits in other areas by extending my writing and verbal communication. It's interesting, if you looked at my Brain SPECT scans you can see exactly the areas that correlate with my strengths and weaknesses! So don't feel bad, Lyme attacks our minds differently!
That brings me to another question. Have you had a Brain SPECT scan? I would recommend one once you see this specialist for Lyme. I do in-fact think your case warrants antibiotics, and you'll likely get them after seeing this doctor.
quote: Also, I never had any heart problems before my pregnancy ever, I don't ever remember having palpitaions. The heart stuff started in the third trimester of my pregnancy.
Ah, well then, the hormonal shift likely triggered the worsening along with the other symptoms. This is common with Lyme Disease and pregnancy. If in-fact you have Lyme, it's important to know that Congenital transmission of Lyme Disease is highly probable in cases in which antibiotic treatment is not being given to the mother when she's infected. Have your child evaluated in the same way you are in order to further reinforce the Lyme diagnosis he has.
quote: I'm sorry I am not comprehending things right now....Its weird that I am having this trouble. I have noticed this a lot lately. SOmetimes I have to read the same line over and over and sometimes I cant find the next line to a sentance and keep goign back to the same one beofre I can find the next one.
I want to laugh, but also cry at the same time after reading this. I'm sure you have Lyme Disease, and thus will have answers and start recovering shortly, but incredibly sad that you are joining our ranks officially.
quote: Yes, I am seeing Dr P in CT on Wednesday and I am just a mess about it.
Write down some summary notes, use the list of symptoms above, and bring all your medical records. Organize them with your partner so the doctor can see all the normal tests in one section and all abnormal tests in another, or separate them by body system. Brain, Chest, Abdomen, etc.
quote: One more doctor, and so worried that I have an "INCURABLE" illness like every other doctor has told me. I dont want to be on steriods but that is what I have been told I need...I refuse.
I'm sure you won't be darlin'. I believe Lyme is curable, I also believe that it's an incredibly hard process for some, like myself, but you may in-fact improve dramatically, so remain realistic.
If you believe in the possibility of getting well, then you're more likely to behave in ways that lead to that outcome, so stay as optimistic as you can. I know it's hard, I really do, your mind wants to linger on the negative and pain, and fear. It's normal to feel this way while undiagnosed like you are. We've all been there here.
quote: I have not had a WB done thorugh IgeneX, only tested through Quest twice which was negative.
Did the quest tests show "any" bands? The test may be considered negative but may have some markers. Bring them with you to Dr. P. He'll know what I mean.
quote: MEtallic, I am sorry I havent quite understood everything you have been saying, but I am so appreciative of you takign your time to help me out!!!
Shandy
It's ok Shandy, you're doing fine. You're on the right track, I promise.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I have not had a spect scan done, only MRI's and Cat scans.....
What is the difference between them??
I truly hope to get the answers I need Wednesday.....I am trying to stay as positive as I can, but feeling as bad as I do I just can't seem to think that things will get better.
I have been up since 3am, and of course cannot get back to sleep....*sigh*
The results from Quest only say...IgG-IgM Negative antibodies...it says nothing else.
Thank you MB!!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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METALLlC BLUE
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quote: Hello Metallic Blue
I have not had a spect scan done, only MRI's and Cat scans.....
What is the difference between them??
Those scans provide physical structure of the brain or other tissues, depending what you're scanning, the SPECT and PET scan provides a view of what's going on "inside" the brain, in terms of how it's functioning, blood flow etc.
quote: I truly hope to get the answers I need Wednesday.....I am trying to stay as positive as I can, but feeling as bad as I do I just can't seem to think that things will get better.
I know, this is where you'll have to have faith in the possibility that answers exist. Just think, there was a time when we knew nothing about microorganisms, or TV's or computers, or even airplanes. There were times long ago when people said "That's impossible" -- and look at what we see?
Obviously these things happened over a long period of time, but it doesn't change the fact that often the impossible just takes a little longer. Dr. P is a really smart guy, and a good guy. I've met him in person and talked to him directly and listened to him lecture.
He will give you a Brain SPECT if your insurance covers it. I wouldn't want to pay for one, that's for sure.
quote: I have been up since 3am, and of course cannot get back to sleep....*sigh*
Insomnia and very poor quality of sleep? Do you wake up when a pin drops?
quote: The results from Quest only say...IgG-IgM Negative antibodies...it says nothing else.
If you don't see that list or anything with a "POSITIVE" in the list of Negatives, then that may be an ELISA test, not a Western Blot. Can you look that up carefully on the form to clarify? I've seen Quest's Western Blot results and unless they've changed it recently that should be what yo see.
quote: Thank you MB!! [Smile]
You're welcome.
If you see Lyme IgG/IgM antibody serology, then that is definitely an ELISA. It shows "Negative, Equivocal, or Positive. The test is extremely weak. I mean, extremely -- there are tons of studies supporting this fact. So, that test, if it is an ELISA, means absolutely ZERO, ZERO, ZERO -- it is worthless.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Nope, I have the results paper from Quest and it just says:
Lyme Antibodies IgG-IgM- Negative
That is both sets of results
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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METALLlC BLUE
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Do you see Western Blot listed "anywhere" on that paper?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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METALLlC BLUE
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This is good news, and bad news. It's an ELISA, that's the good news because it means nothing, and it's bad news because it means you'll need another test. You can get a Western Blot done by Dr. P. I would just use a specialized lab like Igenex or Bowen for the testing, or Fry for Bartonella. It's expensive, but I would charge half, and pay the other half if you can afford to.
If you want to run a WB through Quest, labcorp, or Stonybrook to save money by using your insurance, that's fine, the most accurate of the three is Stonybrook. It's a credible lab that "every" doctor would accept. It's still a poor test compared to the specialized labs, but it's better than Quest or Labcorp. It likely will not influence Dr. P in his diagnosis. He won't need a positive test to diagnose Lyme, if you meet a vast majority of criteria, which you do.
I'd spend the money for the specialized lab if Dr. P is certain it's Lyme just to confirm for your own peace of mind.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
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posted
There is something else you need to know. A positive test result, even from a credible lab, will be absolutely worthless to 99% of the doctors you encounter.
They claim that if you tested positive, even with a credible lab, once you've received 2-4 weeks of antibiotics, the lab is worthless. They'll claim you're cured, and even if you get more blood testing done for Lyme, they'll just claim that your antibody tests stay positive long after Lyme is gone.
So you're screwed either way. The tests are only valuable for a few reasons. As circumstantial evidence for filing for disability, which I would do if I was you, through SSDI -- paperwork can be gotten from the local social security office, as well as Mass Health, you can contact them as well. You're entitled to Stavros care as well, which is a personal care assistant that comes to your home and takes care of somethings.
These resources are available to someone like you, especially if you have a diagnosis from any of the autoimmune sources, Chronic Fatigue Syndrome, Fibromyalgia etc. If a doctor says you're disabled, you're golden. I'll tell you more about this later if you need it.
At any rate, the testing would be helpful for supporting that, but it would also be helpful for you personally, having that power of "proof" to know you aren't crazy, faking, or insane.
Last, it'll help Dr. P to confirm or support his own clinical efforts.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I am feeling terribly today....Aghhh I dont know if I can take one more day of this.
I can deal with the pain, I can deal with the fatigue, I can deal with also of things...but I CANNOT deal with these horrible neuro symptoms.
These symptoms are what keep me bedridden, they are horrible and almost imposssisble to explain in words. I ahve never been able to put it in words except to say it is LIKE this or that.
I suffer fromt these symptoms EVERYDAY since I was in my last trimester of pregnancy Jan07
-Severe Dizziness (COnstant) -Vertigo -Feeling like I am floating -always feel like I just cam off an elevator or treadmill when I try to walk -Feel like I am on a carnival ride -Head PRESSURRE (feels like my brain is swelled) -Cannot walk in the dark or will topple over, symptoms get worse in the dark, on the computer and if I DARE try to go to a store. -Oh and get this one, I cant even look into a mirror or all my symptoms get worse and I feel like falling, whe I brush my teeth I ahve to hold on to the sink. -If I stand and close my eyes..I'm going DOWN.... -My body feels like it sways back and forth
I HATE these symptoms...They all started at the end of my pregnancy...and this is why I cannot get out of bed....I feel so sick ALL THE TIME...with levels of intensity changing at difernt times but always present.
Now those are just what I call my "Neuro" symotims, never mind the other stuff like my heart CONSTANTLY racing for no reason....
I am really at the point of no return....I cant deal anymore
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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METALLlC BLUE
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I know exactly what you're going through, and I can tell you that you're going to get better. You say you feel like giving up, that you can't take anymore, but I assure you that you can.
You can take as much as you take, because you have a family that needs you, you have a life that needs living which is currently on hold, and most of all, two children who love you. They need you, they need protection, to be safe, and that means you need to be safe, so fight! Make a decision to fight, commit to it, go to war. Pacifism has no place in Lyme Disease. Pick up your weapons of faith and your passions for what you value most in this world.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I've sent you a PM with an extremely long blog entry I wrote 2 years ago that encapsulates much of what you have said above. You say you need to express in words your experience, and perhaps you'll relate to this entry.
If others want to see they entry I'll post it, but it was so long that I felt it might be absurd.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I couldnt get into your blog becasue it is private
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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METALLlC BLUE
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I'll open the blog to everyone soon. I sent the post via PM.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Thank you for sharing that with me. You express yourself very well, and unforunatley I can defintley identify with that blog.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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METALLlC BLUE
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posted
There are plenty of other positive entries too, depending on the particular day, hehe.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
michael, beautiful poem; loved every word of it! but do yourself a favor ok, edit it and show a COPYRIGHT and your name on it so you get credit for it as it will be making the LYME CIRCUIT!!
i just hate anonymous poems when someone went to the time and effort to write these!
sorry to the poster, but your name isn't below me, and i've forgotten it by now...
best wishes and HANG IN THERE! hopefully others who have experienced SAME THINGS can give you their tips to get by.
and your lovely 1 hr. old...i'm sure that hurts to not being able to make MEMORIES TOGETHER; it will come in time; just not soon enough for you1 bettyg
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