posted
My husband is experiencing short term memory loss, lessened computer abilities, a slight personality change, and occasional bouts of anxiety. He doesn't have joint pain or headaches or other physical ailments. He is a bowhunter and has had deer ticks on him too many times to count. The Western blot lyme test came back negative or non-reactive.
His symptoms mimic Alzheimer's but he's only 55 years old and there isn't any history of early AD in his family.
Could it be Lyme?
Posts: 4 | From Bryn Athyn, PA | Registered: May 2009
| IP: Logged |
adamm
Unregistered
posted
In the studies they've done, most Alzheimer's has turned out to be Lyme; and I know that the Lyme symptoms of both me and my grandmother approximate those of Alzheimer's. You should checkout molecularalzheimer.org
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
In the documenteray Under Our Skin Dr. MacDonald performed autopsies on 10 brains of people who had died and presumably had Alzheimer's. I think seven of them really had Lyme instead.
Unless your husband had his testing done through Igenex, I wouldn't put any faith in the results.
Lyme is best clinically diagnosed by a LLMD (Lyme Literate Medical Doctor) with the appropriate blood work to support the diagnosis.
I think that, given his symptoms and his exposure, he should see an LLMD. You can get a referral by posting in the Seeking a Doctor forum. It can take months to get an appointment, but these doctors are really the only ones to trust when it comes to Lyme and co-infections.
A really good website with an excellent checklist of symptoms is: www.canlyme.org.
Good luck to you and your husband as you search for answers.
-------------------- 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
| IP: Logged |
posted
Thanks for the information! I will check it out. It's scary to think that my husband might have Ad; I'd much rather it be Lyme. I'm new to this site and not familiar with the medications(?), vitamins(?) you listed. Can you help me understand them? thanks!
Posts: 4 | From Bryn Athyn, PA | Registered: May 2009
| IP: Logged |
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Texas,
Yes, lyme symptoms can mimic AD along with other syndromes. Thus, the 'great imitator.'
Alot of us, including myself suffer (ed) memory loss, mental confusion, and heightened anxiety.
Here is a good source of information, including other symptoms you may not realize he has.
The best thing you might want to do is have him see a lyme literate doctor for a complete checkup. They are knowledgeable in the diagnosis and treatment of lyme, where most MD's and Infectious disease doctors are not.
Even if his test come back negative, they can make a clinical diagnosis based on his symptoms.
If he has been bitten alot, it raises the odds that lyme is probable, especially if never treated.
Please keep us posted and good luck. Posts: 1127 | From atlantic city, nj | Registered: May 2008
| IP: Logged |
posted
Chronic fatigue and very low brain response are my biggest issues. I just had an alzheimers test and was told I have a real memory problem but he did not think it was Alzheimers. The tester was in the Northeast where lyme is prevelent and said he has plenty of lyme clients.
The first time I had lyme it was all physical. I couldnt touch my knees or top of my head but then got ok.
In 99 I took the vaccine and the brain issues started and they havnt been helped at all. In fact they are worse but Im still able to take care of myself because Im very stubborn about going. I have been on disability since 2002 but Im able to live alone.
Posts: 55 | From ct | Registered: Sep 2005
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Alzheimer's Disease is, often, really undiagnosed lyme or other tick-born infection(s).
Memory problems, fatigue . . . all top symptoms of lyme.
There is much more money to be made in Alzheimer's drugs than with lyme treatment that might get people better.
Your husband should see an ILADS-member LLMD. All the symptoms you mention are connected with advanced lyme.
Yes, treatment has turned many around. It's not easy but it can get better.
At which lab were the tests done? Many labs don't do the test right and, even then, the test should NEVER be the determining factor. He needs to have a physical evaluation by a LLMD.
=========
-
These first 3 posts may not mean much but, after you read a bit, you'll see that getting proper diagnosis and treatment has been very difficult for lyme and TBD (tick-borne disease) patients. You might just want to glance a the top three treads to get an idea of what is being done to help change that.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
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:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .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, containing MUCH more detailed information.
-===
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.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
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:
"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."
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.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link.
-
[ 05-05-2009, 03:13 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
If you have a headache, do not look at this site right now, as it is a very busy and bright page - - but this is the site for the very best researcher for lyme/Alzheimer's work, Alan MacDonald.
His work is brilliant (it's just a shame that many of use here can barely look at the web page due to our eyes being so sensitive).
156 pages of compiled research , with photos.
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
You have been given some excellent advice. Please go to the "seeking a doctor" section and post for a LLMD in your area.
Please take your husband to one as soon as you can for help.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hey texasroots, my memory problems, word-finding problems, mild personality change, anxiety, and all other horrible lyme symptoms went away with good lyme treatment.
I finished my treatment 4 years ago and I am still symptom-free, enjoying my life. A lyme doc who follows the Burrascano protocol got rid of my diseases for me. I had lyme, babesiosis, and bartonella.
I have referred friends and acquaintances to Burrascano type docs, and they all had the same experience (except for one person with ALS and lyme who is an alcoholic and would not obey the requirement to stop drinking alcohol).
So, that's what you can expect if hubby goes to a good doc.
Here are the Burrascano lyme treatment guidelines so you will know what good lyme treatment looks like:
Best to get this checked out early. If it is lyme, it is easier to get rid of the sooner you start treatment.
Look at the Burrascano list of symptoms and see how many he has. Any problems sleeping? Any stiff necks, etc.?
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
bettyg
Unregistered
posted
welcome texas roots!
i'm the one whose 40 yr. old sis-in-law died of EARLY onset alzheimer's disease in 93. mayo clinic did an autopsy of her brain taking 4-5 months ruling out everything else. full of plagues & tangles.
i'm sure they did NOT test for lyme; never mentioned ever. brother/her farmed w/dad our century farm. so she was walking beans, picking up rocks in field, hauling grains, etc. there.
Sharing a Alzheimer's simple CLOCK test with you all: ======================================
Draw a circle, and the make a clock putting in all 12 numbers .. simple right?
WHAT TO LOOK FOR as a potential Alzheimer's/dementia patient:
1 - they will draw the SMALLEST circle they can and squeeze numbers in.
2 - numbering is off -- they put all numbers on 1 side or NOT in the areas they should be.
example 1-6 may be in the normal 1-3 position.
Do this now on yourself? How did you do?
I learned this at a AD conference. My sister-in-law died of AD at age 40, yes 40, after having this mind-robbing disease 8-14 years. She was treated for severe depression. Mayo Clinic did an autopsy taking 4 months to rule out other stuf.
Since my brother farmed our family's century farm & she helped outside all the time, yes, she too could have been a victim of lyme disease! We'll never know. Her brain tissue was sent to east coast where her 1 Iowa City dr. went too.
Yes, live in the moment. Admit you can't remember things; hubby tells me I've forgotten a lot lately .. like hearing things for 1st time.
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):
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
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:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007). . . .
" . . .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, containing MUCH more detailed information. -===
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. ==========================
TESTING
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. =========== i'm going to try to post a link here with info on SUCCESSFUL LAWSUITS WON ON LYME DISEASE from www.lymenet.org site! look on LEFT side :legal resources" !! all WINNERS!
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[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. 
Printer-friendly view of this topic