posted
Hi everyone, Thanks for taking a look at my post. I am so sad today, because I feel down in the dumps like I am not getting anywhere. I know that you may or may not be medical professionals, but I hope that you can provide some insight for me.
I am 31, married, no children yet. For the last 4 years my symptoms have gotten worse and I don't know what to do. I have seen 13 doctors in the last 4 years, had several blood tests, MRIs, XRays, prescriptions, therapists.. etc. I have been diagnosed with everything from depression to food allergies.
I am always told that I am normal - which I wish were true because I sure don't feel normal.
My symptoms in the last 4 years have been: 1) extreme fatigue - it's been very hard to get up in the morning, it seems I need about 10-12 hours of sleep.
2) extreme joint pain - my right knee mostly. It feels like such sever arthritis that I cannot walk sometimes, for instance, I am home from work today - it's really interfereing with my life. On occassion it affects my neck, middle fingers, thumb joint, knee, shoulder joint - they have been in slings, braces, and such because they hurt so badly.
3) Jaw clenching - this is new within the last 2 months and has been persistent for the last 2 months.
4) in the last 4 weeks I have been an emotional mess - it seems I am overly sensitive to cry such as simply walking down the hallway at work I get teary, mostly because I feel so tired and run down.
5) right flank pain has been daily for around the last 8 weeks, I wonder if I'm making a kidney stone? I had one once...
I have had various blood works and would be willing to provide those to a professional. I have a file I carry with me now. SED rates, CBC, Vitamin D, Lyme, Lupus, Thyroid, all show normal or negative.
The last doctor I saw ran an IgG blood test for food sensitivieis and found I have 28 food sensitivities such as wheat, eggs, milk, lettuce, citrus, etc.
He says these foods cause me horrible arthritis and fatigue. Do they really? Is this the cause or bunk? I have been eliminating these foods on a regular basis but have not been this sensative before, if it is indeed the foods.
Long story short, I am so lost and would appreciate any guidance. I know the symptoms of Lyme can mimick something else (does any know what the something else can be?)
Also, the Lyme results are negative, so I should assume I do not have that, right?
Thanks for any insight you can provide! Lost in WY
posted
Thats what I have thought John - in reality I have had these symptoms for about 8 years, and have just really taken off in the last 4. I have other little symptoms here and there, but those listed are the most hindering right now and I would love for it to go away.
Posts: 4 | From Wyoming | Registered: Apr 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
wasson,
Welcome! Your symptoms are suspicious for lyme.
Lyme is NEVER ruled out with just a lab test.
Lyme is a clinical diagnosis based on history and symptoms and can be supported by labwork.
99% of Dr's do not understand lyme. They do not know how to recognize, test for, diagnose or treat it properly.
We have all been there....Dr after Dr telling us that all our tests are normal and we don't have lyme.
I will add some links to some info you should read. Educating yourself is the best thing right now.
You have found that you must advocate for yourself if you want to figure out what is wrong with you.
I had to do my own research, get a Dr to order an Igenex western blot IgG and IgM, test #188 and #189....cost $200.....www.igenex.com....order a free test kit.
Then I had to get a copy and interpret the results using info from the real lyme experts about how to read a western blot...since the Dr said it was negative and I didn't have lyme...but I knew the results were very significant with species specific bands.
Then I found my Lyme Literate MD through lymenet.
Can you insist that a Dr order the Igenex western blot? The other labs Dr's use and lyme screens they run are worthless.
Look at the symptom list and other info in these 2 articles/booklets:
There are alot of newbie links at the top of the board too.
There are many coinfections that can cause similar symptoms also.
Keep posting and asking quesstions.
Good luck!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Welcome to lymenet, wasson! I'm sorry to hear you have suffered with those symptoms for so long with no answers. Your story echoes that of many with Lyme and other tick-borne illnesses.
Regardless of whether that is what you have, you are among people who understand. We will do our best to support you and give you information to help you solve this mystery and get on your path to wellness.
Just a helpful bit of advice, you will likely get more replies if you can break up your post (use the pencil edit function) so that those of us with Neuro-Lyme will be able to comprehend it. Sometimes people with late-stage Lyme cannot read large blocks of text.
Some people do better when you break your paragraph every 3 sentences or so. Just a suggestion.
As for your symptoms, they are suspicious, but since we are not medical professionals we of course can't tell you one way or another. What I can say is that you definitely need to see a Lyme and Tick Borne Diseases Specialist (often called a LLMD or Lyme Literate Medical Doctor in the Lyme community), to be properly evaluated.
Testing for Lyme and other coinfections is very poor, and is not intended to be used for diagnosis - even the CDC states this officially - Lyme (and coinfections) is a clinical diagnosis.
So, to find a LLMD please go to the forum "Seeking a Doctor" and post what you have here, and ask for an LLMD in your general area (as far as you are willing and able to travel):
I would also recommend in the meantime, reading as much as you can about Lyme and coinfections, and looking through the scientific research, to get an idea of what you might be dealing with. It will help you greatly.
posted
Wow, that is a very consistant story in Lymenet. Mine is similar too. If there is one thing you should except, is that there isn't a test that can tell you whether or not you have Lyme. So, the doc telling you your test came back negative is BUNK!
Lyme is a clinical diagnosis. If you have a doc that can't stand on his own two feet and make a clinical diagnosis based on sypmtoms/history...he, or she, is an imbecile and/or coward. Run for your life and find an LLMD. And do it quickly.
If this sounds harsh...blasted Lyme rage!
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I am sorry you are suffering. A version of your story is one most of us have lived through.
Your symptoms could be Lyme, especially if ticks are prevalent in Wyoming or some place you have traveled. Or, if you have had a tick attachment.
Lyme can mimic ALS, MS, Parkinson's, Lupus, Chronic Fatigue Syndrome, Fybromyalgia and some others I can't think of right now.
A LLMD (Lyme Literate Doctor) would be the best person to evaluate you.
If you go to the "Seeking A Doctor" portion of this website and post a request for a referral someone will help you.
Best of luck. I know this is a frustrating and frightening situation to be in.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
High hemoglobin?
Low protein?
Sed rate less than 5.
Low lymph?
Low vitamin D? Any sound familiar?
If you have just one band on WB
it signify s the possibility of the need to try to seroconvert the masters of disguise
by antibiotics and retest by a Lyme specific lab like Igenex.
This is where all the allergies come in.
Our immune systems are too turned off by the Lyme, they become as one,
hiding in the cells, so any allergen that comes along it goes crazy in the attack mode.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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