after looking at dr c's explanation; looks like lyme alright!
i asked my 1st llmd who was beginning to learn about lyme about the IGENEX results; NO, HE DOESN'T HAVE LYME! end of subject. Bettyg
hubby/i met w/neurologist kitchell in ames today. he spent 20 minutes going over history and having his do many things.
DIAGNOSIS: "form" of MILD parkinson's; SEVERE TREMORS in hands.
TREATMENT: anantidine, generic med. take 1 day for 5 days; then 2 a day spaced out 5 hrs. ... to help tremors tremendously.
side effects: dry mouth and absented-mindness like going from 1 room to another
2nd med mentioned was ARTINE.
come back in 6 wks. unless tremors are better; if yes, come back in 6 months
his parkinson's signs: SLOW to move, walk, and getting up/down.
he'll get worse in next 5-10 years, "but you won't die of parkinson's ... it will be heart, stroke, or cancer"!
then we forgot to pickup his new med since i ran 2 errands afterwards! look who is absent-minded!!!
i went out to my car and brought him back around 24+ of IGENEX' blue brochure on western blot IGM/IGG blood tests! promoted them to whom as I was looking for a llmd NEUROLOGIST.
"if you find any neurologists looking for a job, WE NEED THEM TREMENDOUSLY HERE IN ames, iowa; DOWN TO 3 VS. 5!" bettyg, IOWA
afterwards, i went to my car and brought up 25+ igenex blue western blot igm/igg brochures/price lists and gave to him since we have NO infectious dr. for over 1-2 years. i'm promoting all the time!
[ 30. May 2007, 12:45 AM: Message edited by: bettyg ]
Posted by Lymetoo (Member # 743) on :
I'm sorry to hear this, betty. I know the pain of Parkinson's because my dad had it. It's on his death certificate.
I believe it was really LYME. Perhaps lyme triggered the Parkinson's, I don't know. But I know he was sick a long time.
My mother, dad, and myself all became ill in the 50's. My father passed away in 1993....so yes, you can live with it a long time.
Find that Western Blot!!
Posted by MagicAcorn (Member # 8786) on :
Hey Betty,
Sorry about your husband. I hope things settle down for the two of you real soon. Here is to hoping his new meds will give him some relief. You are lucky to have each other.
Acorn
Posted by Geneal (Member # 10375) on :
Dear Bettyg,
I am so sorry to hear that about your husband.
Take a deep breath.
Let it out.
You know my brother-n-law was diagnosed with Parkinson's at age 29.
I wish my sister would get him tested for Lyme via Igenex.
He was an avid deer hunter all his young life.
I hope that this all works out okay.
Sending you calming thoughts and healing prayers.
Hugs,
Geneal
Posted by bettyg (Member # 6147) on :
tutu, acorn, and geneal,
BIG THANKS for your thoughts, family experiences, and encouragement.
tutu/others, i dug out the igm/igg before i got on internet!
after looking at dr c's explanation; looks like lyme alright! i asked my 1st llmd who was beginning to learn about lyme about the IGENEX results; NO, HE DOESN'T HAVE LYME! end of subject. Bettyg
Posted by Kayda (Member # 10565) on :
Betty,
I am so sorry for all that you and your hubby are going through! When it rains it pours!!!!!!
O.K. time for you two to get a break.
I am praying for the medicine to work very well and that the Parkinson"s can be reversed.
Sorry, I don"t know anything about the med he is on.
Kudos to you for campaigning for our Lyme caue and trying to get drs. to come around. Education is the key.
I sure hope you can get some rest tonight. Try not to worry, O.K.? You never know what new breakthrough will be just around the corner.
Kayda
Posted by bettyg (Member # 6147) on :
kay, to be honest, this is a relief and CONFIRMS what i've thought since he was caregiving for me after my hip surgery.
i don't think he will agree to do anything about lyme, but HAPPY he's not fighting meds to help her severe jerking.
he loved woodworking and we have lots of wood around here for all his diffeent saws!
also loved doing the paperwork of paying bills and keeping track of our investments; quit that 15 months ago! he's lost without his hobbies!
he loves his westerns, and cable has them; thank you God!
what comes; comes! it's the hand we are dealt and learn to make the needed adjustments whether we like them or not. that's life plain & simple. Posted by bettyg (Member # 6147) on :
a MS/LYME online friend of mine sent me this, and i'm sharing w/others as well:
I have been on amantadine (note correct spelling) which is used (also provigil) for fatigue in those with multiple sclerosis.
Input from others for them was that it worked for a few weeks and then didn't work...This was for fatigue of course. It did not help my fatigue but it did make many other people on my MS lists less fatigued and more alert.
I don't know about the dry mouth and absent mindedness. Didn't notice that in the time I was on it but dosages may be different....(no, reread your email...dosage same).............
something else I found that you might be aware of is that some lyme patents were diagnosed in error with Parkinson's or diagnosed with Lyme when it was Parkinson's. Does that mean anything to you? Posted by seibertneurolyme (Member # 6416) on :
Betty,
Hubby has been taking 100mg Amantadine/Symmetrel for Borna Virus for about 4 years. Don't really think it helps his tremors much. This drug is really an antiviral -- neuro's can't really explain why it helps some Parkinson's patients. I don't think this drug will hurt, but am doubtful it will actually help tremors.
The only positive band hubby has ever had on numerous Western Blots is a positive for band 41 -- has never even had any indeterminate bands at all. But he does have a positive PCR test.
I have written about hubby's really bad experience with Artane before -- during one psych admit the psychologist was convinced that hubby had Parkinson's even though all the neuros say he does not. The psychologist said he would stop hubby's tremors in 3 days -- he actually almost stopped all movement.
The Artane is a very strong anticholinergic -- can't remember hubby's dose now. What I would suggest is that you give your hubby some over the counter Benadryl (start with just 25 or 50 mg dose)-- a much milder anticholinergic. That should give you an idea of whether the other drug would be helpful or not.
It was while he was taking the Artane that hubby developed the classical Parkinsonian shuffle-step walk. This still comes back when he is the most symptomatic.
Marnie has written extensively about acetylcholine and the Lyme connection. Most Lymies are deficient in acetylcholine --they need more of it (supplement with oral phosphatidylcholine or take it IV -- PK protocol). Artane is an anti-cholinergic -- makes acetylcholine less available in the body.
The symptoms of both too much and too little acetylcholine are the same -- tremors can be caused by either too much or too little acetylcholine.
Good luck to your hubby.
Please please go slow and start with low doses of any meds or things could get much worse instead of better.
This is just my opinion and not medical advice.
Bea Seibert
Posted by treepatrol (Member # 4117) on :
Authors' conclusions A considerable amount of evidence on the effectiveness of amantadine has accrued from non-controlled trials, often in patients with Parkinsonian conditions other than idiopathic Parkinson's disease. However, rigorous analysis of the six randomised controlled trials of amantadine reveals insufficient evidence of its efficacy and safety in the treatment of idiopathic Parkinson's disease. from Cochrane Rev Abstract. 2007
The immunosuppressive effect of amantadine upon the response of lymphocytes to specific antigens in vitro.
If its lyme its gas on the fire get him on minocin. minocin+parkinson Posted by Truthfinder (Member # 8512) on :
Oh dear Betty...... I'm sure you are glad to have a diagnosis, but this is not a particularly terrific one.
Obviously, you are wondering if Lyme could be the culprit and that would be my first thought, too. Many Parkinson's patients see improvement if treated for Lyme...... your hubby may change his mind about Lyme treatment.
A couple of thoughts.....
Since your hubby already has a suspicious Igenex test, maybe you should consider using the flow cytometry test from Central Florida Research for a comparison? They now accept Medicare assignment......
Also, there is another treatment option you might want to consider. Low Dose Naltrexone (LDN) has been shown to help MANY patients with autoimmune diseases, including Parkinson's. It's fairly inexpensive; relatively safe; simple to take, etc. I haven't researched Parkinson's & LDN specifically, but here's the main LDN website. I think there is at least one online support group, too:
Well, just a couple of ideas to throw out there.....
All the best, Tracy
Posted by Lymetoo (Member # 743) on :
Band 39 alone is definitive!!
I agree...Try minocin...Go with low dose.
Posted by Vermont_Lymie (Member # 9780) on :
Hi Betty,
Just want to send you and your husband my best wishes. I do not know anything about these meds, sorry, but it sounds like you are getting good advice above.
Sure sounds like your husband has a positive blood test for lyme. I have only ever had a + at band 41, but have had good relief from tremors from lyme treatment.
Does he take nutritional supplements too? I take lecithin daily, which is a source of choline.
Hope he has a good response to all treatments, and that you have time to rest and relax too!
Posted by bettyg (Member # 6147) on :
bea, tree, tutu, vermont, and tracy,
thank you each for your feedback, personal experiences, and links. now i've got plenty of HOMEWORK to do!
i really haven't let this sink in. i know trying to get hubby to take anything else that the md didn't prescribe yesterday will be almost impossible since he's so stubborn. he hates pills, and surprised he didn't raise a stink yesterday when the 1 was RX to him.
again, thank you ALL for your knowledge/experiences on this subject! you all are a very special club; i'm glad i'm a lifetime member! Posted by psano2 (Member # 11711) on :
I had severe tremors at my worst w/Lyme. They've mostly gone away now after long term abx treatment. I still have some tremor, esp in my left hand, that I had before Lyme.
At my worst, my left hand became spastic, and flopped around uncontrollably, my voice shook, my head shook back and forth, my hands shook so much that I'd spill anythink I had in a mug or glass, and I couldn't hold a newspaper still enough to read it.
This was before my diagnosis, and led me to accupuncture tx, which helped. But long term abx helped the most.
Good luck to you and your husband.
Patti
Posted by sick (Member # 9143) on :
I am so sorry Betty. If he likes westerns the library usual has them in large print if you can get them.
I wish I was closer and could help but I am going thru my own family hell right now.
I will pray for both of you as that is all I can think of. My mind is too clouded to think straight right now.
sick
Posted by treepatrol (Member # 4117) on :
bettyg
You know its not sexually transmitted right Gee I wonder where he got it?
Bb cant be caught that easy Posted by treepatrol (Member # 4117) on :
Betty Read these in Newbies Links bottom page 3.
Parkinsons
Lyme Parkonsinism Parkinson or Lyme with links on page Should read this also it relates to PD Antibiotic hope for PD Lyme-Associated Parkinsonism
Page 4. Hereditary Angioedema
Posted by bettyg (Member # 6147) on :
patti, dorothy, and tree,
thank you for your caring messages!
patti, what you described at your worst is what i see daily in my DH. glad yours is gone now!
dorothy, so sorry your family hell is still going on with your brothers and your folks both in nursing home now! you take of yourself; but your prayers are most welcome!
tree, thanks for your additional links .... boy, i've got to get busy now with ALL the links ALL OF YOU are supplying to me.
now i know what a newbie feels like when they get my 57 pages of newbie links/advise ... overwhelming! payback! Posted by bettyg (Member # 6147) on :
i talked to hubby at supper time at some of the suggestions. he was NOT interested at all since none of us are doctors; "he'll do as this dr. says"!
i will look at the earlier info over the weekend to see why it says...
getting read for my JUNE 1-30 LYME DISPLAY WINDOW at public library, 1st time. getting all my paper stuff together, and will lay them out on bed to dimensions available to me.
snags:
mannequin - younkers store was supposed to call me back and didn't; they gave AWAY a bunch of old, used ones to our local fire dept. for water rescue, etc. so far haven't located a FULL LENGTH one after 4 calls.
haven't received my 2 boxes of LDA BROCHURES ... ABCs OF LYME & TICK CARDS FROM LDA HQ, NJ.
haven't received my 2 boxes of 70 issues each of public health altert newspapers. dawn is very sick right now; worst ever.
so i'll set up without for now, and hope they all arrive in next week! wish me luck!
i do have 250 igenex western blot igm/igg blue brocures/cost sheets to hand out.
i have 5 FACES OF LYME PHOTOS/WRITEUPS TO DISPLAY!
Posted by sick (Member # 9143) on :
You're awesome Betty!!!
sick
Posted by bettyg (Member # 6147) on :
dorothy, would you want to participate in FACES OF LYME? can you send me a scanned photo of yourself by email?
thank you; you are awesome too for all have done for your 90s parents without asking anything in return! your parents are SO PROUD OF YOU DOROTHY for your caring nature.
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payback!