I have not been on here in a long, long time. That is a good thing I guess. I have no idea what my login used to be but thanks again for those who pointed me in the right direction a few years ago. While I'm not 100%, I do live a fairly normal day-to-day life with symptoms appearing just mildly on occassions. I now need some help again.
My step-dad just got diagnosed with Parkinsons yesterday. However, all of us on here know, we will not accept that until Lyme is RULED OUT!!! So I have found what I could on here which isn't much. He is only 55 and in great health with no history of PD in the family. He grew up in and around the woods and still lives amongst the trees now.
So I call out to all, any information on personal stories of the wrong dianosis or articles or other you know being diagnosed falsely, please share with us.
Thank you all so much in advance, I know you will help on this message board!!!
Sincerely,
Trip Ritchie
Posts: 2 | From South Carolina | Registered: Jul 2009
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posted
I think some Parkinsons is lyme and some isn't. It is certainly worthwhile finding a good lyme doc to look at the situation. One now-retired lyme doctor who treated ALS/Lyme cases, also had some people who had been diagnosed with PD, but responded to lyme treatment.
You should also try a search of lymenet archives as this question has come a number of times in the past.
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
welcome ritchie!
i'll post my welcome letter below with links of info and BELOW IT WILL BE PARKINSON'S INFO since my own hubby was diagnosed with this 4-5 yrs. ago after being dx with ESSENTIAL TREMORS.
have him be tested for lyme by western blot igm and igg by IGENEX; info galore at bottom.
HAVE HIM TESTED ALSO FOR CO-INFECTIONS, meaning the other diseases the ticks carry! igenex does this too and it's cheaper at a few other lyme diagnostic labs ok!
**********************************************
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!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
there is also a CURRENT POST going on in MEDICAL about parkinson's ... so read down thru the posts and check out screens 1-4 !! ok *************************************
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
Glad you are doing well. Hope your step-dad gets the right diagnosis and does well also.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
So sorry for you and your family.
Here are some links that I saved regarding Parkinsons.
Please click on the link for "Symptoms" to download the pdf. There you can search within the doc for Parkinson's. There are quite a few studies and cases referenced. I will try to copy some here for you as well:
________________________________________________
Parkinsonism ``We present a case of striatonigral degeneration, a form of multiple system atrophy, in Lyme-associated parkinsonism. A 63-year-old man presented with erythema migrans rash, joint pains, and tremors. Serum and cerebrospinal fluid antibodies and polymerase chain reaction for Borrelia burgdorferi were positive...
To our knowledge, this is the first report of striatonigral degeneration in a patient with B burgdorferi infection of the central nervous system and clinical Lyme-associated parkinsonism.'' (1)
``Parkinson's syndrome can also develop during stage 2. The physical findings, which are sometimes asymmetric, include global rigidity, akinesia, hypomimia, tremor, cog- wheeling, and postural instability.'' (2)
``the last [patient] developed parkinsonism and communicating hydrocephalus after an otherwise classical meningoradiculitis'' (3)
(1) Lyme-associated parkinsonism: a neuropathologic case study and review of the literature. Cassarino DS; Quezado MM; Ghatak NR; Duray PH. Arch Pathol Lab Med, 127(9):1204-6. 2003. (2) Lyme Disease and the Nervous System. Louis Reik, Jr., M.D. New York:Thieme Medical Publishers. 1993. (3) Neurologic forms of Lyme disease. 12 cases. Viader F ; Poncelet AM ; Chapon F ; Thenint JP ; et al. Rev Neurol (Paris), 145(5):362-8 1989. (4) Meningoradiculitis and encephalomyelitis due to Borrelia burgdorferi: A follow-up study of 72 patients over 27 years. Krüger H; Reuss K; Pulz M; et al. J Neurol, 236:322-328. 1989. ________________________________________________
By the way, I'm glad you are doing better! Did you ever post about your improvement in our Success Stories?
posted
I knew fairly well his symptoms and here they are. He has had tremors in one hand and arm for about two years. Also has numbness in one of his lower legs (I had that and still do sometimes but in both legs). His cat-scan showed all things in the brain firing as normal. I'm having a hard time with a general diagnosis of PD. Thanks for all the help so far and keep it coming! Sincerely, Trip
Posts: 2 | From South Carolina | Registered: Jul 2009
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posted
My father had Parkinson's. He died before I was dxd with Lyme, so we never looked to that as a possibility. He had a LONG history of many tick bites.... as all of us in the family did.
I believe my mother had Lyme as well.
DEFINITELY get your step dad checked out with Igenex lab and a good LLMD!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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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. 
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