Hi, my dad just got back from the Mayo and they are thinking he might have Mad Cow, Jakob's disease. Very scary. He has so many symptoms of Lyme. They want to do a brain biopsy. Anyone heard of this?
Posted by sixgoofykids (Member # 11141) on :
I would certainly be tested for Lyme before I agreed to a brain biopsy, but I don't know your father's whole story.
Posted by Leelee (Member # 19112) on :
What are your dad's symptoms? Has he been tested for Lyme through Igenex?
I am sorry he is sick. Of course you are worried and a brain biopsy sounds extremely frightening.
If Lyme is a possible diagnosis for your dad I would suggest seeing an LLMD.
Posted by freshveggies (Member # 21233) on :
So far we can't get into a LLMD. My dad has weight loss because of GI issues, fatigue, shortness of breath, twitching in his right hand and shoulder, head pressure, vision loss, confusion, short-term memory loss, disorientation, anxiety, word block, brain fog, and it is rapid progression of his symptoms.
I don't believe they tested through Igenex. This is the 3rd hospital and the first time we have seen an infectious disease doctor.
We are thinking of starting him on antibiotics without getting to a LLMD doctor since we can't get into one.
[ 07-20-2009, 10:23 AM: Message edited by: freshveggies ]
Posted by Leelee (Member # 19112) on :
freshveggies,
Your dad's symptoms sound suspiciously like Lyme. I don't know anything about Mad Cow Disease, but everything you have listed is common with Lyme. Has he had a tick bite that he remembers? Of course, that isn't always a good indicator b/c so many of us don't ever see the tick or remember the bite.
Is it possible to have him tested with Igenex right away, before the brain biopsy? You can order the kit yourself and have a doctor draw the blood. They have a website if you want to read more about it. (www.igenex.com)
Also, I know it is really, really hard to get into an LLMD b/c there are so few of them and they are so busy, but perhaps you could schedule an appointment even if it is a few months out? If you ask to be put on the waiting list you can sometimes be seen sooner.
LLMD's sometimes are integrative medicine doctors as well as Lyme specialists so they are trained to look for uncommon causes in difficult to diagnosis cases.
If it were me I would want him to start the abx right away and hope for some improvement. But, I have absolutely no medical basis for saying that.... just something I would try out of desperation. Is the infectious disease doctor willing to do that for him? Sometimes they are very reluctant.
Posted by TerryK (Member # 8552) on :
So sorry this is happening. Consider contacting ILADS and telling them what is happening and that his illness is rapidly progressing. See if anyone there can help you facilitate an appointment. www.ilads.org
Get on an appointment cancellation list with an ILADS LLMD if you have an LLMD in mind. You can always cancel if you are able to get him in sooner.
Has he been tested for babesia? Bottom line is that even if he had a negative test result for lyme or co-infections, he still may have it. Testing is very unreliable contrary to what the IDSA states.
If it were me, I'd opt for the abx now. He can still see an ILADS LLMD even if he is on abx and in fact, I'd recommend that he get an appointment ASAP regardless of what an IDSA doctor diagnoses.
Please let us know how he is doing when you can. We care.
Terry I'm not a doctor
Posted by freshveggies (Member # 21233) on :
Thank you so much for your insight. In April he had a flu and then it slowly progressed and now his symptoms are changing daily.
I have an appointment Oct 5 with an LLMD, but that is not soon enough. He may not even be able to travel then.
I will call Igenex and get a kit. I will also call ILADS to see if they can help get an appointment sooner.
We have a relative who is a doctor who would prescribe for us. Do I use the protocol on the ILADS web site. I was thinking 300-600mg doxycline. Any suggestions. This is a case of neurolyme.
[ 07-20-2009, 08:37 AM: Message edited by: freshveggies ]
Posted by Leelee (Member # 19112) on :
Would your family member who is a doctor be able to draw the blood for Igenex? That could be the only problem I see in getting the testing done....a doctor needs to either write the order and send you off someplace to get the blood drawn or do it himself.
Also, the lab results must be returned to the ordering doctor (who can give them to you) so if your relative could be that person that would be wonderful.
Not sure about the dosing of doxy, but I would imagine the ILADS protocol would be safe to start with. You may also want to check out Dr. Barruscano's guidlines. He is the doctor that initially came up with the treatment plan for Lyme patients. You can find those guidelines on Lymenet somewhere (sorry, I can't remember specifically where at the moment).
After reading your last post about his initial flu symptoms and the daily changes I am even more suspicious of Lyme, Many Lyme patients have similar stories.
I am glad you have an LLMD appointment on the horizon even if it is a long ways off. If you can get the Igenex testing done now that will be one less thing to have to wait for then. I might suggest testing for co-infections too. Igenex has a panel that can screen for most of them. I think it is around $950, but worth it.
If you want more specific Igenex information (what to order, costs, etc.) you might want to start a new thread and ask for help. So many people know a lot more than me and would be willing to help. They are a great group here!
I wish him all the best. Please keep us posted.
Posted by Lymetoo (Member # 743) on :
I'm very sorry to hear about your dad.
Did you find an LLMD in SD???
Posted by abigail (Member # 14936) on :
I think Mad Cow disease is like Alzeheimers. Supposedly, they are all related to feeding dead cow parts back to cows who go to slaughter. Anybody who has ever had a hamburger from a fast-food joint has the prions that are implicated in these diseases. Old people's immune systems are just losing the battle against these prions cause they are old. I think Mad Cow is the accelerated version of Alzheimers and there is no cure for it. They have infused drugs straight into the brains of young people who have been diagnosed with Mad Cow and they still died so what is the point of a brain biopsy?
Posted by Carol in PA (Member # 5338) on :
Does your father go game hunting or eat venison and elk?
Deer and elk can carry Chronic Wasting Disease, which is similar to mad cow disease in cattle and scrapie in sheep.
ILADS has an on-line discussion group that medical professional's can join. I think one must be a member of ILADS though. Not sure what it would take to join other than the membership fee. http://www.ilads.org/about_ILADS/about_us.html
I don't know that this will solve the problem but it may well help him get treatment if your family member is willing to go out of his/her way. I really don't know for sure how this would work or if it would work but it's worth looking into.
Terry
Posted by bettyg (Member # 6147) on :
veggie and abigail,
please break up your longer paragraphs into short ones and double space between each paragraph; big thanks!!
veggie, don't let mayo do a brain biopsy!! my brother took his EARLY ONSET ALZHEIMER'S WIFE there for 1 week of testings all day long. bottom line left, do a LIFE biopsy. he chose NOT too; she could end up a living vegetable.
mayo knows NOTHING still about lyme and co-infections; their blood tests for both are NOT sophisticated like igenex and east coast labs!!
i'll paste my welcome letter here again; print off my DOSAGES/MEDS FOR ADULTS/KIDS and the entire dr. b's guidelines.
yes, get your cousin to write lab slip for him to be tested and results go to him. that's explained below in my welcome letter as well ok.
best wishes and my heart goes out to you/family 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. ----------------------------------------------------
I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
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 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!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
That being said I would check for Lyme first.
Posted by treepatrol (Member # 4117) on :
Yes ! Take everything that the Mayo clinic says with a salt Block!
Posted by lou (Member # 81) on :
That flu in April does sound suspicious. Don't know how active ticks are in April where your father lives, but it would sure be worth checking into lyme first. And as someone else said, what would be the purpose of a brain biopsy for a person with a supposedly incurable disease? Mayo will never diagnose lyme when they can come up with something else, or nothing else and still say the person doesn't have lyme.
If you start him on meds, you should be alert for herx. Also, some people find that an antibiotic challenge increases the chance of a positive. But this probably only works for PCR/antigen testing, not antibody. In fact, antibody testing may be adversely affected by abx. So, get some advice first on the order of things to do.
Posted by freshveggies (Member # 21233) on :
I May have found a doctor who can help. Others have been treated by him for Lyme. He is not on the list. There is actually 2 that I might be able to choose from. They said take him to the emergency room. It is 3 hours away.
My dad was in Texas once and Mexico 2 times since Jan 09. Maybe he could have gotten a bite there.
We also have eaten Deer and Antelope. My whole family has eaten the same meat as my dad.
Posted by Wimenin (Member # 15294) on :
Ive always wondered if there wasnt a connection between lyme and chronic wasting disease. Given the deer population, deer ticks, lyme, etc, it wouldnt surprise me if there was some connection. But anything that involves brain, CNS involvement is going to overlap other disease symptoms.
Posted by Leelee (Member # 19112) on :
quote:Originally posted by freshveggies: I May have found a doctor who can help. Others have been treated by him for Lyme. He is not on the list. There is actually 2 that I might be able to choose from. They said take him to the emergency room. It is 3 hours away.
My dad was in Texas once and Mexico 2 times since Jan 09. Maybe he could have gotten a bite there.
We also have eaten Deer and Antelope. My whole family has eaten the same meat as my dad.
That is good news. Let us know when he sees the doctor.
I don't know about Mexico, but there are most definitely ticks in Texas. He could easily have been bitten and not realized it. This happens all the time.
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hugs/kisses![[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.