Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
Serenity Now

For Patriot & Other Lyme'rs

Recommended Posts

When I was researching Lyme Disease, I couldn't believe how similar many PD symptoms are to Lyme.  

According to the Lyme Research Alliance, these are some of the symptoms, which I have that originally led me to thIs forum.

Change in smell, sleeping issues, short term memory loss and forgetfulness, blurry vision, muscle pain and cramps, poor muscle coordination, weakness, numbness and tingling, tremors and twitching, poor balance, stomach issues, extreme fatigue and lightheadness.  

Those are also PD symptoms.  Other symptoms that I have and are on the list are:

Unexplained weight loss (lost 5% of my body weight from Nov to Jan without trying), decreased hearing and tinnutis (1 ear), burning sensations and red eyes.  I had dizzness when I looked down for about a month, but its gone, thankfully. While these symptoms may not normally occur with PD, I've read on here and other sites, some Parkies have these. 

Plus other Lyme sites have listed these other symptoms of internal vibrations, stiffness and handwriting changes.  All which are also symptoms of PD. 

Yet I cannot find any correlation to Lyme with reduced blink rate, loss of arm swing and irregular tongue movement as I also have.  My friend recorded me several times, and I only blink 5 times/minute.  Do any of you with Lyme know if those 3 things can occur with it?  

I have been bite by ticks several times since I'm in the woods a lot.  i never had a bulls eye rash.  But it's been at least 5 years since I last found a tick on me.

How do I get quality Lyme testing since there are false negatives?  

Thanks in advance and sorry for writing so much. 

Edited by Serenity Now

Share this post


Link to post
Share on other sites

For quality Lyme Testing, check with the ILADS (International Lyme and Associated DIseases Society). They have made strides in better testing and best labs to use. Just FYI, there are people (I'm one of them) who have what is found to be a probable Lyme-associated condition in addition to Parkinson. I know there are people who have both Parkinson's and this other condition--called Filimentous Borrelial Dermatitis (even though,the condition is systemic). It's been found that one of the meds used to treat another pathogen that is often involved in Lyme DIsease actually treats the Borrelial one better than the one that would be thought best to treat Borrelia issues. Do you have any skin-type symptoms?

  • Like 1

Share this post


Link to post
Share on other sites

Linda,

Thanks for the information.   No, I have no skin type symptoms, nor do I have joint pain, which I thought is a common symptom of LD.  

I agree with Otolorin; what you posted is interesting.  Never heard of that. 

 

Edited by Serenity Now

Share this post


Link to post
Share on other sites

If you want a quality Lyme Disease test, your ILADS certified physician should send your blood test to IGenex, which is the gold standard of Lyme Disease labs.  It is also imperative that you see an ILADS certified physician, as the typical doctor is clueless when it comes to Lyme Disease.

I've got something to do this morning, but I'll try to describe my Lyme Disease experience later today.

 

  • Like 2

Share this post


Link to post
Share on other sites

Patriot:  Good post re: being sure to see an ILADS-certified physician!!!!   Otherwise, you will just be wasting your money.

  • Like 1

Share this post


Link to post
Share on other sites

Here is a good article about Lyme Disease: https://medlineplus.gov/ency/article/001319.htm

In many cases, including mine, I did not have a rash or even know when I had been bitten by the tick that caused my Lyme Disease.  Therefore, I was not treated for Lyme Disease while in an early stage.  I did have bouts of flu-like symptoms, stiff neck, joint pain and swelling, tendon pain, numbness and tingling in my hands and legs,  and a significant cardiac dysrhythmia.  Unlike typical PD, the onset of Lyme Disease symptoms in late stage Lyme Disease is very fast.  I would feel relatively normal one day and wake up the next day feeling like I had a serious injury to my knee or elbow. 

After MANY months of symptoms; MANY visits to various neurologists with conflicting opinions; various tests (mostly abnormal); and a lot of frustration; my family doctor finally decided that intervention was needed and put me on the Burrascano Protocol for Lyme DIsease.  I had a PIC line inserted and then six weeks of IV antibiotics, followed by months of oral antibiotics.  My symptoms finally began to improve.

Over the next ten years, my symptoms would occasionally come and go, but weren't as bad as they initially were.  Around the year 2000, my symptoms returned with a vengeance.  I walked with a limp; had numbness and tingling in my extremities; a  significant cardiac dysrhythmia; swollen joints; and a large lump on my left Achilles Tendon.  By this time, Al Gore had invented the internet.  I did some research and discovered that there was a Lyme Disease Specialist only 100 miles from where I live.  I went to see her and she did a bunch of blood tests.  I had more than 50 (fifty) tubes of blood drawn on my first visit, including the blood sample she sent to Igenex (the reference lab for Lyme Disease).   It was positive for Lyme Disease and the other blood tests showed a few other co-infections.  My Lyme Disease doctor was both a MD and a ND (naturopathic doctor).  She offered more oral antibiotics or an herbal treatment.  She said that she had excellent results with the herbal treatment and I decided to give it a try.  The herbal treatment is called the Cowden Protocol and I followed it to the letter.  She said that the treatment would improve my symptoms and I have to admit that I was skeptical.  My symptoms gradually improved and I have basically been in remission for the past few years (although I'm currently having neck pain and stiffness which I can't decide is the result of PD or Lyme Disease).

Late stage Lyme Disease is bad, but in my opinion it's better than PD.  With late stage Lyme Disease, at least there is the possibility of effective treatment of the disease, not just the symptoms.  With late stage Lyme Disease, a cure is even possible, albeit not that likely.

Many of these neurological diseases have similar symptoms.  I'm absolutely sure that many people are misdiagnosed.  For many months, the neurologists suspected that I had MS, when in fact I had Lyme Disease.

Please feel free to ask if you have any questions.  I'll be happy to help as much as I can.

 

 

 

 

 

 

 

 

 

 

 

 

 

  • Like 3

Share this post


Link to post
Share on other sites

Both, although my Lyme Disease has been largely in remission for the past few years.

Many of the symptoms of PD and Lyme Disease are quite different.  Lyme Disease symptoms are closer to MS than PD.

Share this post


Link to post
Share on other sites

Patriot, 

Wow, what an amazing story!  Thank you so much for the in-depth response and for telling your experiences!!   That wins my vote for post of the day.  Glad you are in remission from LD, so it doesn't compound your PD.  

Thanks for the link.  That guys arm is disgusting.  What a horrible battle you endured to get your LD dx.  50 tubes of blood, yikes.

Good to know about the type of doctor to see.  You're right about the misdiagnosis.  I'm astounded at how many diseases mimic Lyme.   My friend was finally diagnosed with Lyme after a 20 year search.  She, like you, had the joint pain and flu.  I don't and never did have jolnt pain,  and I can't recall when I last had the flu.  She was really sick for awhile, too. 

My most bothersome symptoms don't really come and go,  but rather they may not be so  bothersome some days.  But little changes happen, like for weeks, I had a super dry mouth, but now my mouth has excess saliva.  Six months ago my legs/arms sometimes felt tight, but now my thighs feel constantly constricted.  I have more stiffness than I did then.  If I sit for more than an hour, I walk really odd.  

I read an article on how MS is really Lyme, so it's interesting you noted similarities.  I'm not sure if I believe rhe article, but nothing would surprise me with big pharma.  I have no questions now since you explained it to succintly. 

You made me laugh so much about Al Gore. ?  Thanks again to you and Linda.  You both helped a lot. 

Edited by Serenity Now

Share this post


Link to post
Share on other sites

Patriot,

Could you please elaborate on how you noted many PD symptoms are different from Lyme?  Are you referring to the flu and skin symptoms?   I've read on sites how Lyme mimics PD; see link below.  Even Dr. Okun noted on March 2, 2007 that Lyme can cause Parkinsonism but not PD, so maybe I'm interpreting incorrectly.  Now I'm confused.  

http://www.parkinsonsresource.org/general-information/lyme-disease-a-parkinsons-imitator/

You are very fortunate to have had the treatment in time.  One man died of Lyme after he first waa diagnosed wirh ALS.

http://www.huffingtonpost.com/david-michael-conner/man-diagnosed-with-als-di_b_8891262.html

 

Linda,

Do you think your Borrelia caused your PD?  I thought the article below was intersting.

https://www.holtorfmed.com/lyme-disease-and-parkinsons/

 

I talked to my friend with Lyme, who lives in a different state, and she never went through the tests because it's so expensive and her insurance wouldn't cover it.  But her last doctor recognized she had all the symptoms, so they treated her.  

I did contact a ILAD's doctor, and it's $1,000 for testing.  Wow!  He is an expert in Lyme.  I am starting a new job soon, and will wait to see how the insurance is before I get tested.  My current job offers no insurance. 

When I wrote I had no joint pain, I wasn't thinking about my shoulder pain that started last year. I was thinking of joints as wrist, elbow and knee.  Stupid me.  I also now get intense neck pain in the back of my neck and more stiffness.  Sometimes my neck feels like it's stretching or pulling.  Weird I know. 

Have you ever heard of Lyme causing loss of arm swing?  

Edited by Serenity Now

Share this post


Link to post
Share on other sites

Serenity, it's quite possible that Borrelia caused my PD, though I guess we don't know for sure.  I have most (and probably all) the co-infections that the article mentions.

I'll be forwarding the article to my MDS for his info. and thoughts.

  • Like 1

Share this post


Link to post
Share on other sites
22 hours ago, Serenity Now said:

Patriot,

Could you please elaborate on how you noted many PD symptoms are different from Lyme?  Are you referring to the flu and skin symptoms?  

I did contact a ILAD's doctor, and it's $1,000 for testing.  Wow!  He is an expert in Lyme.  I am starting a new job soon, and will wait to see how the insurance is before I get tested.  My current job offers no insurance. 

When I wrote I had no joint pain, I wasn't thinking about my shoulder pain that started last year. I was thinking of joints as wrist, elbow and knee.  Stupid me.  I also now get intense neck pain in the back of my neck and more stiffness.  Sometimes my neck feels like it's stretching or pulling.  Weird I know. 

Have you ever heard of Lyme causing loss of arm swing?  

Serenity,

There are many symptom differences between Lyme and PD.  You identified at least 3 of them.  To begin with, many people exhibit a "bullseye" rash when first bitten by a Lyme infected tick.  There is no such "bullseye" rash with PD.  Flu like symptoms are another example, although not to the same extent in my experience.  Third, loss of arm swing is typical in PD and I've never heard of that with Lyme. 

In my experience, PD progresses very gradually.  Lyme disease symptoms occur very suddenly and severely.  For example, with Lyme you can wake up one day with significant joint pain.  It's like you were hit by a truck overnight.  A few weeks later, it may disappear as quickly as it started.  While a frozen shoulder is common in PD, other joints are commonly affected with Lyme, including the knee, hip, and elbow.  In addition, Lyme has the capability to take different forms and can hide in the body from antibiotics and other treatments.  In my case, I had a large painful lump develop in my Achilles tendon.  My Lyme disease doctor said it was Lyme and that she could fix it.  I was VERY skeptical.  She was right and she did make it disappear with herbal treatment.  I also had serious pain in my neck and shoulders.  She called it Lyme meningitis and again was able to successfully treat it with the Cowden Protocol, an herbal treatment.   

As for the expense, being treated for Lyme is somewhat expensive.  Many Lyme disease doctors, including mine, do not accept any insurance.  She literally takes cash only.  The upside is that I have an hour long appointment with her every time and get to thoroughly discuss my issues.  Well worth the money in my opinion!

 

  • Like 1

Share this post


Link to post
Share on other sites

What are the skin symptoms with Lyme Disease? Beyond the bullseye?

 

 

Edited by drummergirl

Share this post


Link to post
Share on other sites
21 hours ago, Serenity Now said:

Linda, Thanks for responding.  I was just curious.  I realize you may never know for sure. 

I'm very appreciative of the article you sent!  :-)

Share this post


Link to post
Share on other sites

Linda, 

I am very appreciative to you and Patriot for your information.   Glad you found it informative.

 

Patriot,

Thanks again.  I understand it more now.   I was looking for another cause for my loss of arm swing, but never heard anyone w/Lyme having it, so also thanks for mentioning it's not a Lyme symptom.

 

Drummergirl,

I have read that besides the bullseye rash, some with Lyme can get lesions, skin infections, dermatitis or what resembles it and a rash that resembles Lupus.  

Edited by Serenity Now

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×