posted
Hello everyone! After hours of googling I found this forum.
Here's my story: My husband has been diagnosed with Parkinson's but now I believe he has Lyme.
We lived for many years in an area of Germany with a very high incidence of ticks. My husband was bitten several times; they seemed to like him!
We never took any measures against the bites. I just searched his body from them and removed them.
The first Parkinson symptoms appeared about 3 years ago.
Not so much tremors but stiffness of the joints, stiff neck and facial features, shuffling gait.
But worst of all was a dementia that progressed very quickly.
Yet it is strange. He can talk quite intelligently sometimes, remembering dates, names and events exactly.
But sometimes talks utter nonsense, and he is totally useless when it comes to daily matters.
Conversations with him can be tortuous, as he cannot compute even simple things like "we are going to the airport on Tuesday and taking a plane to England", but keeps asking and asking and getting dates and times confused.
He can no longer look after himself or perform simple tasks, but has become totally dependent on me, calling for me every few minutes.
He cannot use a touch phone because he forgets which buttons to press. He is almost like a toddler in some ways.
He also suffers from depression, fatigue, listlessness, lack of motivation, a general hopelessness.
He can no longer write coherently, he no longer reads anything at all.
The hardest thing is to keep him from just sitting there listlessly, or sleeping all day.
He is best when he is among friends or any company, but that is not always possible. I cannot
Recently, after an accident in which he broke his arm, he has also turned incontinent so that he needs full time care around the clock.
His fingers and other joins are stiff and awkward. Everything is slow.
He needs ages and help to enter and leave cars, chairs etc, getting into bed is a major operation because he cannot budge or move his body around.
Some of the typical Lyme symptoms are missing. No headaches or pains, for instance, though occasionally he goes down with terrible back pains which means he cannot even walk for a few days.
We moved from Germany a year ago but I know that I have removed several ticks from his body and there must have been many more that went unnoticed.
He was in hospital on Germany recently and the neurologist was convinced that he has something else similar to Parkinsons, or something else as well as Parkinsons.
He wanted to do some more tests requiring water to be removed but my husband refused.
Since we are insured in Germany we can get good treatment there and I do intend to speak to one of the neurologists who have treated him in the past and will get back to you here, but just digging up all the info I have today I am feeling more and more convinced that I am on the right track.
I have a feeling that he has what the Germans call Neuroborrielose. I am not sure what that is in English but will look it up.
Obviously though he is in a very late stadium of the disease, if it is Lyme. I'd love to hear your opinions!
Posts: 4 | From UK | Registered: May 2008
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bettyg
Unregistered
posted
WELCOME to the board; so glad you found us.
going to bed , will be back later in afternoon.
my hubby has parkinson's ... i'll tell you what i know ok!
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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welcome, and sorry that you had need to find this site.
As you may know many of us in the US have difficulty finding treatment and many of those at this site were not diagnosed early on. Still, many have seen improvement - and many who get better get on with their lives and don't frequent this site anymore.
Do you recall your husband ever having bullseye rash with any of those past tick bites? It is not necessary but, if so, quit telling.
Next question: does he have any aspartame/nutrasweet in his diet (that may just be in American foods, but it is toxic). MSG, too, in all it's names and forms should be avoided due to toxic effects on the CNS - central nervous system.
Steroids can be very bad for lyme and require special precautions
and lumbar puncture (spinal tap) for dx - diagnostic reasons is not suggested as it's like fishing, unreliable for borrelia. It is a very painful experience and can have some side effects that linger. If done, the needle size matters as do the specific instructions for after care. But, best to avoid, if possible. We can give you the doctor's excerpts about that if you need it.
Not just lyme, but other TBI - tick-borne infections are to be considered for evaluation. Babesia, especially, but also ehrlichia and bartonella - one of those has a newer name ana-something.
It is courageous of you to look further. I think you may have a very good reason to look further. With treatment, perhaps, your husband can see improvement. Of course, the right doctor would be needed.
Others will be along with more information for you .
You might also google the link for LYMENET EUROPE, I think it's called.
you can look over the newbie post at this site and
I looked up "neuroborreliosis, Parkinson's" and "lyme, Parkinson's" and got nothing.
at the ILADS site, to the right of the page may still be some of the work of a Dr. MacDonald (or McDonald) who has done extensive research with spirochetes in Alzheimer's. He may also have some info. on Parkinson's.
Also . . . from ILADS articles and presentations, is an article by Audrey Stein Goldings. She addresses MS and lyme, but may also speak to Parkinson's. Nevertheless, it's an excellent article and may hold some clues for you.
Clinical Advisor Issue Story From the May 2007 issue of Clinical Advisor
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.
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
I googled lyme parkinson's, with many hits. I did not check pubmed. There is a yahoo group on lyme, called eurolyme, to find a dr. My impression is that there are only a few in each country. A small number will travel to U.S. for consultation/treatment.
There is a poster here, seibertneurolyme, whose husband has lyme and bartonella, and has parkinson's type symptoms. The bartonella seems to currently be a problem. If you pm her, maybe she can provide more info.
Is It Parkinson's or Lyme? Are Young Adults Regularly Misdiagnosed?
Michael was a smart man in his 30's who was an actor with moderate success. He was, however, a little too impressed with Ivy. Meaning, anyone who worked as part of an "Ivy League" faculty was like a great heavenly Gnostic sage, offering the great pearls of truth. If he only knew the reality.
He was from New York and had enjoyed a wide range of vacations in the past, including hiking in the lovely New York mountains.
Lets look at the simple basic symptoms of Lyme disease. Primary Symptoms That Are Reported to Diagnose Parkinson's Disease
* Slow intentional movement -- if you want to go to another room it is hard to initiate this action, and once you are moving it is hard to keep going and get to the kitchen. * Tremors in almost any part of the body when you are resting. * Rigid or Stiff muscles -- one of the reason's folks with Parkinson's have frozen expressions * Poor balance -- my grandfather had Parkinson's from the influenza in the 1910's and this was a serious problem. He would finally get moving and he could not keep his balance and would fall. * Eccentric walking -- features include a wide based gait, with poor arm movement and tiny steps.
Other Parkinson's Signs
The neurological dopamine damage in the brain can cause many other symptoms. Indeed, a very wide range. Here is just a sampling:
* Psychosis and agitation * Eating trouble -- since the muscles of eating are acting poorly, food can collect in the back of the throat. Swallowing is a very complex muscle and nerve action. * Excess sweating and excess saliva. * Trouble with urine and stool control * Depression and hopelessness -- I recall my grandfather telling me over the space of fifteen minutes that he was not always this way. I was sad he said, this since I knew he was a vital and active lead RCA engineer in his time, and an avid dancer and golfer. * Skin dryness and other skin trouble * Eccentric handwriting including tremor signs at the point of initiation before the writing started and then very tiny letters. * Low volume speech
The Diagnostic Disaster
The heart of the Parkinson's diagnosis is ruling out other neurological disorders, since these symptoms are found in many disorders. Most importantly, the symptoms above can occur in neurological Lyme.
As has been very well described, neuroLyme can present in a hundred ways and is called the "Great Imitator." Yet many Neurologists do not take this seriously and never consider Lyme in Seizures, ALS, Migraines, MS, Strokes or hundreds of other neurology or psychiatric diagnoses.
Since Lyme is the leading vector illness in the US, and lab tests are commonly utter junk (See 20 articles on this fact on my web site), it is easy to miss. Lyme with Parkinson's symptoms looks exactly like real Parkinson's. Exactly!
Parkinson's is progressive over years. But so is Lyme.
Parkinson's waxes and wanes, and so do the spirochetes of Lyme.
****
Michael had four labs look at his blood and urine, and in conclusion it was felt he might have Lyme. After eight weeks these tests were repeated and he was clearly positive -- perhaps because some Lyme was killed and pieces caused a large immune response and some parts were found in both the urine and the blood.
In six months he was the best he had been in four years, and was using a greatly reduced Parkinson's medication dose.
He had three SPECT Scans, which are nuclear exams of how the brain is eating.
The first SPECT Scan showed eight lobes with a patchy Lyme-like finding.
The second looked much worse. We suspect it was worse from the death of so many Lyme bugs and their release of toxins in their outer membrane increasing inflammation.
The third SPECT scan was markedly improved, but not yet normal.
Michael is planning on doing more work, and is pleased with his progress. He suspects he got Lyme while camping about eight years ago. ============================================ Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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I can't remember my husband ever having bullseye rash or any other rash, though he does sometimes get red blotches on his skin.
The stiff neck is very weird. Sometimes he lies in bed with his head an inch above the pillow. I have to push it down so that it lies on the pillow!
He is 64 but from his outward appearance, behaviour and talk he is more like an 80 year old.
Posts: 4 | From UK | Registered: May 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I don't really have much to say. It looks like most people already gave you a lot of great information.
I was just going to say that pain is not always a must with lyme disease. Most of my symptoms do not usually include pain, but neuro and other weird but scary symptoms.
If he was bit by so many ticks, there's a big chance that this is lyme disease.
The nuerologist you see probably won't be able to help you and may just ignore your questions about it possibly being lyme disease or will just tell you that it's not lyme. Doctors are very dumb when it comes to lyme. That, or they are acting dumb about it.
Good luck.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Another thing about the lack of pain, I used to say I didn't have pain with the Lyme Disease. However, when the pain started lifting, it was only then that I realized how much pain I was really in.
I was so used to it, I didn't even notice it was there until it was leaving, or when it would get worse with a herx.
I would have him tested. Even if he does have Parkinson's, he might have Lyme, too.
I had many of the issues you describe. My bartonella gave me horrible cognitive symptoms where I couldn't even follow my children's simple conversations.
I could type, but handwriting or speaking were extremely difficult some days. I couldn't read very well. Yesterday I was reading a book, and my 12 year old daughter came in surprised and happy that I was reading a book again. It's been over a year since she has seen me read.
Even the fact that his symptoms come and go, that he is better when other people are around, shows Lyme could play a part.
I would definitely see and LLMD. No question about it. It might be Parkinson's ..... but perhaps it's Lyme. Lyme is the new "Great Imitator."
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Sixgoofykids, I also wanted to add that my husband would never ever be even close to writing anything as coherently and correctly as you just did!
I could only hope and dream that one day he will be able to do so again.
Cognitively he is sometimes on the level of a very small child. He can barely sign his name, and then usually he cannot even sign it where he is supposed to, even if I show him exactly where to sign!
On the other hand he can talk about things that happened a long time ago, remember names and so on, things that I have forgotten.
He often forgets words and his sentences trickle off into nothing. People I know who have knowledge of Parkinson say that this is not typical.
For me the worst problem is incontinence, which only started recently. First he began going to the toilet several times a night. As he has a broken arm I have to go with him.
And then sometimes nothing would come. And then he began wetting the bed and his clothes. Now he is wearing diapers day and night.
He needs to drink a lot of water but I am reluctant to give him because of all this peeing! I no longer get a good night's sleep.
And I can no longer leave him alone to go to work.
Posts: 4 | From UK | Registered: May 2008
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posted
Anytime a doc says atypical seizures or atypical M.S. or atypical Parkinsons's I would be looking for an alternative diagnosis.
Of course it is possible to have both Parkinson's and Lyme.
Does he have any other neuro symptoms such as headaches or light sensitivity or sound sensitivity that are not typical of Parkinsons?
If you seriously think he has Lyme or a tickborne disease then you need to see a specialist in those diseases -- I know in the U.S. most neurologists know next to nothing about Lyme -- assuming it is the same where you are.
Is your husband on Parkinsons meds? If so, have they helped? If I remember correctly too high of a dose can increase stiffness instead of alleviating it.
Parkinsons meds actually didn't just stop hubby's tremors -- they pretty much stopped all movement. Have pretty much come to the conclusion that his tremors are primarily caused by Bartonella and not so much from Lyme.
It is hard to say if the dementia type symptoms you describe are from Parkinsons or related to encephalopathy from Lyme or another tickborne illness.
There is at least one poster on LymeNet whose husband was originally diagnosed with Alzheimer's.
I would definitely check into the possibility of tickborne illnesses since you know your husband was actually bitten by ticks. However, I do want to reemphasize the importance of seeing a specialist -- not a neurologist. Tickborne testing is very inaccurate and only a Lyme literate medical doctor can make a clinical diagnosis.
Good luck and keep us informed.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Arunadasi, My husband and I have been the same route as you are describing - a few minor differences here and there. The doctor who helped me to get well and who diagnosed my husband with Lyme and Parkinsonism is presently in Europe back and forth via the UK. You might be able to contact him while he is there. Not sure but worth a try.
If you are interested, please send me an e-mail. [email protected]. You can scan our doctor's website www.neuraltherapy.com and www.klinghardt.org. You might read some of my posts on Lymenet to get an idea of the integrative approach.
Be patient and know that a huge number with ALS, MS, Parkinsons diagnoses - test positive for Lyme Disease, but need a very special approach.
Hope to hear from you.
Take good care and don't give up. Some of the Parkinson medications have this effects you described, especially if misdiagnosed.
Posts: 9834 | From Washington State | Registered: Oct 2000
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bettyg
Unregistered
posted
arunadasi,
my husband has severe hand tremors/legs/feet
and advanced parkinson's described by someone's explanation of what to expect w/parkinson's.
many from Europe do have an IGENEX BLOOD TEST for western blot igm and igg drawn and then sent to USA to
IGENEX in california **********************
many folks added much more to help you; best wishes!
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