[ 08-09-2009, 08:26 PM: Message edited by: mommaINga ]
Posted by bettyg (Member # 6147) on :
momma,
many of us have severe neuro lyme and caan't read what you typed above. please break up your long paragraph into MANY, SHORT ONES AND DOUBLE SPACE betweeen each paragraph so we may comprehend and read it. then we can offer you advise
huge thanks and use my guideliens below ok hugs/kisses
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
Unless he tests protein. Not iron, protein. It will be low. Let us
know if you find anything.
Posted by Parisa (Member # 10526) on :
My husband has dermatomyositis caused by Lyme and Babesia. I'm glad your other son's case was resolved with prednisone. It didn't work in my husband's case just made him sicker. Treatment for Lyme disease has made a big difference.
I wish you luck with an ER room. In general, they are pretty ignorant about Lyme disease if that and if that is what your son has I would be surprised if they think about it.
Posted by TO LIFE (Member # 12371) on :
Dear Mom,
I have 3 son's myself. My youngest who is nearly 17 weights 130 he is 5' 10", who is on the thin side. He is healthy but not a very big eater at all. If it was my son I would 100% FLY DOWN, AND HELP GET TO THE ROOT OF THE PROBLEM.
Hang in their.
Posted by mommaINga (Member # 21746) on :
Sorry about the spacing. I didn't know that,
I'll be shorter!
After reading most of the day about Lyme disease,
I'm pretty convinced he doesn't have it. He has
a few of the symptoms. I will though, let you all
know if they come up with anything tomorrow! If
tomorrows visit doesn't yield anything, I will go
with him when I take him back to his house on
Saturday. I don't get to see him very often and
I'm out of work, so this is the perfect
opportunity. Sad thing is, the Dr's he has seen
think all he wants is drugs and that is the
furthest thing from his mind.
Thanks again everyone for your quick responses!
Posted by pab (Member # 904) on :
Momma,
Here is a list of Lyme disease symptoms:
1) Unexplained fevers, sweats, chills, or flushing 2) Unexplained weight change--loss or gain 3) Fatigue, tiredness, poor stamina 4) Unexplained hair loss 5) Swollen glands 6) Sore throat 7) Testicular pain/pelvic pain 8) Unexplained menstrual irregularity 9) Unexplained milk production: breast pain 10) Irritable bladder or bladder dysfunction 11) Sexual dysfunction or loss of libido 12) Upset stomach 13) Change in bowel function-constipation, diarrhea 14) Chest pain or rib soreness 15) Shortness of breath, cough 16) Heart palpitations, pulse skips, heart block 17) Any history of a heart murmur or valve prolapse 18) Joint pain or swelling 19) Stiffness of the joints, neck, or back 20) Muscle pain or cramps 21) Twitching of the face or other muscles 22) Headache 23) Neck creeks and cracks, neck stiffness, neck pain 24) Tingling, numbness, burning or stabbing sensations, shooting pains 25) Facial paralysis (Bell's Palsy) 26) Eyes/Vision: double, blurry, increased floaters, light sensitivity 27)) Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28) lncreased motion sickness, vertigo, poor balance 29) Lightheadedness, wooziness 30) Tremor 31) Confusion, difficulty in thinking 32) Difficulty with concentration, reading 33) Forgetfulness, poor short term memory 34) Disorientation: getting lost, going to wrong places 35) Difficulty with speech or writing 36) Mood swings, irritability, depression 37) Disturbed sleep-too much, too little, early awakening 38) Exaggerated symptoms or worse hangover from alcohol
Posted by IckyTicky (Member # 21466) on :
You say he has a few of the symptoms. Most people with Lyme start out with only one or two symptoms that can be explained away by other things. I'd somehow get him to an LLMD to be tested if it were my son.
Posted by Pinelady (Member # 18524) on :
Moma what ever he has he sounds sick.
I would not give up till I had an answer for what
is wrong with him. His metabolism is in overdrive
and many hormone diseases can cause this. And Lyme
can cause hormone problems. The pain you describe
in hip, neck and joints could be caused by
rheumatic fever. So what ever it is is needs found.
Posted by AliG (Member # 9734) on :
You might try the multi-symptom checker on www.wrongdiagnosis.com to see what some possibilities may be.
Has he tried supplementing with protein shakes, perhaps with a couple of tablespoons of a healthy oil added?
Does he have any regular headaches or just the symptoms you've listed?
Posted by Jin (Member # 11735) on :
Dear mommaINga, Your son could have Celiac Disease. Weightloss is very common with that. Body pain is typical with it, since many patients are severely malnourished. Another possibility is a hormonal disease, as others have suggested. Adrenal Gland disorders would be an excellent place to start. Addison's Disease comes to mind.
Another thing to test for is a Hyperactive Thyroid. This can even cause organ damage if left untreated over time. Some of the simplest things are often missed by doctors. Usually, it is done out of stubborness. I went to a teaching hospital, and they nearly killed me.
The trouble is with those places, you are the practice dummy! IU Med missed my gallbladder that went bad, and got me stuck on Celexa after telling me I was just crazy. I found out years later that I am not insane, I am sick! Emotional scars from that horrid experience have yet to heal. Make sure you know every single thing they are doing and why beforehand for your son's sake.
With the Celiac, they can do a blood test. However, you can be seronegative even if you have it. Mine did not show up in the blood testing. An endoscopy with a biopsy of no fewer than 8 villi is the gold standard for diagnosing it. I certainly understand where your son is coming from, since I am several years older but have no insurance.
Sincerely, Jin
Posted by TX Lyme Mom (Member # 3162) on :
Momma, I concur with what Jin told you about celiac (aka: gluten intolerance). You don't have to have Lyme disease to have celiac, but I have read something about "pseudo-celiac" (ie, celiac-like) symptoms being recognized in Lyme patients by savvy LLMDs.
Be sure that they screen him for celiac disease because it is often overlooked and then those unfortunate folks can suffer for many, many years with a variety of undiagnosed symptoms before it is finally diagnosed. Here's the link to a top-rated celiac forum.
Here's another website for excellent info on celiac. (Click on "celiac 101") It will explain exactly how celiac is diagnosed so that you will know whether the ER docs do it right or not.
ER docs at a university hospital ought to be better than regular ER docs in ordinary community hospitals. If necessary, print out this article and take it with you so that you can be sure that they consider celiac carefully before they decide to dismiss him with an alternate diagnosis.
If he has any GI symptoms and if you also suspect Lyme disease because of a history of tick bites, then you need to read this article published in a gastroenterology journal by an LLMD. It describes that they did intestinal biopsies by endoscopy and they found Bb and also Bartonella that had infected the gut mucosa. (See especially pg. 79 in the article at the link below.)
Here's a link to another article about celiac from Scientific American, which is on the newstand right now. You might want to pick up a copy while it is still available because the original version has beautiful color illustrations which make it much easier to understand how celiac and "leaky gut" and autoimmunity can work together to make a person so very, very sick.
Good luck. I hope you receive this message in time for it to be helpful to you during your trip to the ER.
Posted by Jin (Member # 11735) on :
Dear TX Lyme Mom, Thank you for the article link for Scientific American! I am certainly going to add this to my Celiac Health File! It is nice to know someone is writing about Celiac. For years, I had stomachaches and miserable colon problems and nausea. Reflux came along later.
Dear mommaINga, Another thing about Celiac is, weightloss is sometimes the only symptom. One of the men in town the healthfood store clerk knows was wasting away to nothing and eating like your son. He went through a lot of testing, but it seemed to take an eternity to find out the cause. I suffered for years, and lost my gallbladder and developed Thyroid Disease. My teeth are also going bad.
If you do not catch Celiac early, damage may be irreversible. A rare form of intestinal lymphoma is linked to it. Lyme and Celiac have many of the same symptoms. Hopefully, your son will get an answer soon. Feel free to ask any questions that come to mind.
Sincerely, Jin
Posted by JamesNYC (Member # 15793) on :
Momma,
You say you don't think he has lyme--why not?
Maybe he doesn't, but when the MDs start telling you that they don't know what he has, and start reaching for anything that *might* explain his symptoms, it's time to suspect lyme.
My brother had VERY similar problems. Severe hip and back pain. So bad that he couldn't work at a desk anymore. Methadone couldn't stop the pain.
The MDs, all six of them including a orthopedist had no explanation and eventually told him it was in his head.
Also, he was losing weight while being too debilitated to move let alone exercise. He was eating 3k calories a day just to maintain his already too skinny weight.
Again, the MDs blew him off with no explanation other than it was in his head. They dismissed his weight loss as a symptom.
Your son's aunt's CFS is not a diagnosis of a disease. It is a "syndrome" of unknown cause. Many (most?) of us here with lyme were "diagnosed" with CFS first (myself included) and really had lyme.
The same with RA. Many of us have been diagnosed and unsuccessfully treated for RA and found out later it was lyme.
Your son's aunt may have/had lyme too. (Which would just mean he comes from an area that exposes him to ticks).
If the MDs can't figure this out, then you should spend some time here researching lyme and it's symptoms. That's how many of us found out, the MDs let us down.
Good luck.
James
Posted by missextreme (Member # 3610) on :
So sorry to hear that your son is sick. I'm 23 - it's tough to be my age and going downhill.
Hope he finds help, and let me know if you have any questions
Posted by glm1111 (Member # 16556) on :
Please check out the possibility of PARASITE/WORM infection. Do a search here for symptoms. Also check out
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