I have tried to space this out better for those that have trouble reading. My apologies.
My husband was a healthy,active man in May of 2008. He drives horses (in a cart) on a daily basis since last December, 5 days a week.
We went to Acadia National Park in May, drove 30 miles and had a blast. When we got home he went totally downhill.
He was having 10 second chills 5 times a day, fever of 99 for two months, total fatique, anxiety, depressed (because no one can find out what is wrong with him!)
He has been tested for everything from Lyme to Thyroid. His Lyme test came back negative - Titer (sp?). In May I did pull a tick from his thigh - it was a little red. So now it has been 3 months of feeling fatique, but not tired, he has basically been in bed for 3 months or on the couch.
His primary care doctor finally said we are going to treat him for Lyme and gave him Ceftin for an antibiotic in July. He is allergic to penicilan and also Ceftin so he wound up in the hospital for 5 days.
The doctor's at the hospital tested him for everything, gastro, infestious diseases and still nothing.
As of this writing he is still fatiqued, cannot do anything without feeling like he has no energy and his knees ache.
He is still getting the 10 second chills but has no more fever. Because we have had no diagnosis except he is B6 deficient, possibly Celiac Disease (came back negative), he has had a endoscopy, colonoscopy, blood work, B12 shots and still feels like he is going to die.
So now our new doctor thinks he is nuts and should see a shrink. This man has no reason to be depressed except for his body feeling awful and no real diagnosis.
Because we are around horses, he mows the fields, is outside all day long could it be Lyme???? He is pretty much at the end of his rope and I don't know how much longer he can stand feeling this way.
Can anyone help us????
Should we do another Lyme test??? We are pretty desperate at this point in time.
Update 8/25/08. I ordered the test kit from California and will bring it to our doctor on Wednesday.
Will keep everyone posted.
THANK YOU FOR YOUR ADVICE AND HELP.....it is comforting.
I know he is NOT nuts.
[ 25. August 2008, 10:56 PM: Message edited by: Miss Murphy ]
Posted by Lymetoo (Member # 743) on :
I'm so sorry your husband is suffering so!!!
YES! Get a test through Igenex Lab in CA. www.igenex.com Ask for test kit #188 and 189. They will send it to you for your dr or lab to draw the blood.
Do the test early in the week so the blood sample does not sit around in the post office over the weekend.
Get him checked for babesia also!!! That may be why he feels like death warmed over... chills and horrible fatigue.
Igenex can test for the babesia as well. ( PS... the test he was given was likely done by a lab not set up to test for all the bands and/or he was only given an ELISA test, which misses 60-70% of cases! )
Lyme Disease Symptoms List 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: list areas____ 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: list joints_____________ 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.Diffculty with concentration, reading 33.Forgetfuiness, 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
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue Arthralgias Myalgia Drenching sweats Headaches Emotional lability Depression Dark urine Splenomegaly Dizziness Nausea and vomiting Cough Dyspnea Fever Chills Hepatosplenomegaly Jaundice Malaise Shortness of breath Bleeding tendencies, bruising Thrombocytopenia Hemoglobinuria Hyperesthesia Pulmonary edema Encephalopathy Low to normal range leukocyte counts Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
Posted by Lymeorsomething (Member # 16359) on :
Sure thing Miss. I was like a piece of iron--never sick in my life. I worked out since my teens and participated in all kinds of sports.
Then when lyme came along everything changed and I've been fighting like hell to get my health back for almost 2 years now.
When I got sick, it took 10 mos. to get diagnosed. Standard tests fail often as do most standard docs in diagnosis. Only lyme specialists--LLMDs--understand the complexity of this infection.
Took me a good 7 docs to find the problem and that's NOT too bad as far as that goes. Some go through over 10 docs or more...
Pursue it at least. It could ultimately save your husband's active lifestyle...
Posted by Angelica (Member # 15601) on :
If you husband does have Lyme disease he could have become gluten intolerant because for some reason many people with Lyme disease are gluten intolerant even though it does not always show up in testing.
It is important to get the Igenex testing and get tested for coinfections as well.
Posted by lymielauren28 (Member # 13742) on :
Pursue Lyme disease! And don't take no for an answer! Too was right on - get tested through Igenix, they're a tick specialty lab.
Post over in the seeking a dr. section for a Lyme Literate Medical Dr. in your area. Don't delay!
Lauren
Posted by adamm (Member # 11910) on :
The best Lyme tests are only 58% sensitive, and, since
he has not been infected very long, time is of the essence in your
pursuit of treatment; it's critical that you see an LLMD now.
If you wait too long, there's a
significant
chance this will plague him for the rest of his life.
Please find a doctor who follows the ILADS' (rather than the IDSA's
guidelines) and get your husband well!
For all the info you could possibly want on why doctors are so reluctant to diagnose the disease, check out Pamela Weintraub's book, cure unknown; for all the info you could possibly want about the pathophysiology of the disease, check out lymeinfo.net and lymecryme.com
[ 25. August 2008, 11:41 AM: Message edited by: adamm ]
Posted by bettyg (Member # 6147) on :
welcome, so glad you found us.
sorry, but i can't read anything you posted since i have neuro lyme for almost 39 years.
please break it up into SHORT PARAGRAPHS so neuros like me can comprehend and read it in order to help you! instructions below....plus other info to help you.
Welcome; so glad you found us!!
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying so we all must manage our time well; so specific titles get our time/replies. NON-SPECIFIC ONES, I SOB, SCROLL ON BY! *************************************************************
Also, please be VERY SPECIFIC in subject line what you will be discussing.
Example:
PLEASE show your positive, +/-, and IND numbers from both western blot IGG AND IGM blood tests; do it this way please!
IGM ... do same thing for IGG below IGM *******************************************
18 + 41 +/- 78 IND
When you post or reply, please break up your solid, continuous block text welcome to the board! 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 ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
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. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
LYMETOO'S DR. C'S EXPLANATION OF WESTERN BLOT TESTING!
PRINT THIS OFF the full explanation, and then CIRCLE the numbers that coincide with your positives, IND! That will explain your no. results! -----------------------------------------------------------------------------------
also, please see below, TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
see my newbie package info; click on link at bottom of my package. @ http://tinyurl.com/58eyou ****************************************
Posted by tabbytamer (Member # 3159) on :
These symptoms and the fact that you pulled a tick off of him sure sound suspicious for Lyme (and/or something else the tick was carrying).
Start, if you haven't already, making a symptom diary. Also, if he should get any kind of rash (not everyone gets a rash) take photos with a coin or ruler in the snapshot to show relative size of the rash. Never give out the original photo, keep that for your personal records.
Is he allergic to Ceftin or did the reaction he had to Ceftin have the docs say he was allergic?
There is so much information here at Lymenet, it can be overwhelming. But Betty gave you some great links.
Try starting with Dr. Burrascan's "Diagnostic Hints and Treatment Guidelines"
Note what he says about the "Herxheimer reaction".
Welcome. Sorry you're husband is so ill. But glad you found Lymenet. The folks here are great Posted by Wimenin (Member # 15294) on :
It sure sounds like lyme...
Get a lyme test from igenex.
Get an apptmt with a LLMD (check this site for recommendations).
Do research on the different signs and symptoms of lyme.
-Beg your dr to get on an abx till you can see a LLMD.
btw: if it is lyme, don't be surprised that your drs didnt catch it, and dont know how to treat it...and instead pushed anxiety. When all else fails, or should I say, when the dr fails, they just say anxiety for a cure all..
Posted by Lymetoo (Member # 743) on :
Where's Miss Murphy??
Posted by Miss Murphy (Member # 17005) on :
Thank you all so much. I am going to order the test and have the doctor send it out on Wednesday.
I will look up doctors for Lyme in New Hampshire.
Everyone is telling my husband, Billy it is all physcosamatic (sp?).
I keep going back to Lyme becasue he was so happy, competing weekly in carriage driving and having the time of his life, he is 59.
Thanks for advice, will keep you all posted.
Posted by Lymetoo (Member # 743) on :
Doesn't sound like all that is in his head!!! I think the doctors are
Check your private messages!
Posted by Keebler (Member # 12673) on :
-
Miss Murphy
I cannot read your original post. Many here have neurolyme and nystagmus (jumpy eyes).
If you would kindly go back to your post and edit it with 2-3 sentence paragraphs and then extra white spacing in between more people would be able to see it.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
===================== =====================
`` . . . the immune system does not begin to repair itself until the beginning of the fourth month of antibiotic treatment. . . . ``
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
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:
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.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang
you can access his web site through www.hepapro.com or try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro.
poster's note: while few get well without attention to nutrition and supporting the liver and adrenals with specific supplements, anyone considering complementary approaches should be sure to have first read the abx protocol for a better grasp of the task at hand.
Basic, supportive herbs to "get the body stronger" are NEVER enough to get over lyme or coinfections. Very specific attention must be paid to the nature, life-span and forms of each tick-borne disease (TBD).
Each infection is treated differently and it is no minor undertaking. It is best to seek guidance with skilled professionals who are truly lyme and TBD literate. They will know, specifically, how to proceed.
-
Posted by brooke (Member # 16606) on :
Lymetoo, I have a question for you...
Which babesia test do you order from Igenex?
brooke
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by brooke: Lymetoo, I have a question for you...
Which babesia test do you order from Igenex?
From the Igenex site: "The usual first tests to order for the co-infections are IFA antibody tests: Babesia microti-#200
=============================
A complete Panel has been established for the Midwest, Southern and Eastern Region (Panel 5090)....."
So...my guess would be #200 unless you have the $$$$ to spring for the whole panel #5090.
This is not medical advice... just what I would do.
Posted by timaca (Member # 6911) on :
Well....here's some thoughts...
Why do you think he has celiac disease?
Why is he getting B12 shots? What was his B12 level? (B12 deficiency can cause all kinds of problems)
Here's a link to B6 deficiency (which you state he has): http://healthlink.mcw.edu/article/985640580.html B6 and B12 deficiency can cause depression and fatigue, so that could explain those symptoms.
It wouldn't explain the chills...so getting retested for lyme is a good idea. You could also have him tested for other tick borne diseases...
Best, Timaca
Posted by brooke (Member # 16606) on :
![[Smile]](smile.gif)
![[Wink]](wink.gif)
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. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
![[loco]](graemlins/loco.gif)