Parkinson's Movement

Lymes: Anyone Had It Misdiagnosed As PD?

Lymes: Anyone Had It Misdiagnosed As PD?

A while ago I decided to spend the bit of money on a blood test for Lyme Disease before spending any more money on therapies and things that haven't helped reverse most symptoms. Just wanted to clear that up before moving on, especially before trying any drugs. Minor symptoms started about 8 yrs ago and gradually got to where they couldn't be ignored, and was diagnosed 3 yrs ago with PD. I thought of Lyme early on but didn't know about labs like IgeneX that could give a conclusive result. We'll...

Today I got the results back from the tests and they are positive. I'm not sure whether to laugh or cry! On the one hand Lyme can be eradicated, though not easily. But I could have both LD and PD. Anyone with a similar experience? Any advice where to go from here?

21 Replies
oldestnewest

I have had people tell me to get tested for LD but I had Dat Scan for PD and it was positive. Hopefully you don't have both.

Reply

How accurate is a DAT scan?

Reply

Sorry, no advice for you but have often wondered the same thing about my husband. He was treated for tick bite fever many years ago in Africa. Been diagnosed with PD for 13 years but he doesn't shuffle and doesn't freeze. His gait is more in line with someone with a different disease eg Ataxia. Can't seem to get anyone in the NHS to listen or carry out any blood tests (eg Lyme) so guess we'll have to do it ourselves. Would be keen to find out your next course of action.

2 likes
Reply

Glenandgerry, thank you for your reply.

During my visit to my MD for the Lyme test results he started looking online for infectious disease specialists nearby. We live in northern Alberta, and the closest specialist would be 400 miles. I had already done some research and found there are 2 doctors in Canada who specialize in treating long term Lyme Disease. When he heard that my doctor asked me to get a name and phone number and he will refer me to the specialist. If I find out more I'll be sure to post an update.

3 likes
Reply

I have never had Lyme disease but have looked into alternative therapies, including (the first link listed at the top of the page):

google.com/search?client=ms...

Samento for Lyme:

newswithviews.com/Howenstin...

Banderol and Samento for Lyme:

townsendletter.com/July2010...

Coq10 & NADH for Lyme fatigue:

ffhdj.com/index.php/ffhd/ar...

1 like
Reply

yes, many... my functional medicine doctor's office treats many LD people, some of whom don't know they have LD, but have been diagnosed with PD. So they go to her for pd help, and she runs extremely thorough bloodwork to eliminate the possibility of LD, as one of her preliminary tests. Like she did for me. She even retested me b/c I am young onset and she wanted to test for ALL STRAINS of lyme diseases. It was expensive but worth it. My results came back clean. LD can cause a number of health aliments that present like something else... mold sensitivity, food allergies, tremor, etc.

3 likes
Reply

Wow. Appreciate your MD cause most of them disregard that possibility.

1 like
Reply

healthabc whereabouts is your functional medicine doctor and what is her name? She seems as though she knows her stuff

1 like
Reply

She is in Rockland County, NY. Where r u? She also has made reference to an expert in Westchester County, NY, I just don't remember his name. (My fm doc is not accepting new patients right now...)

Reply

We're in the UK but have been in contact with a FM Dr in Georgia via Skype. Presently awaiting results of my husband's gene test from 23andme so it's early days yet and we've a long road ahead

Reply

Yes, I tested positive for Lyme. As an endurance trail runner living in the U.S. where Lyme is prevalent, an infectious disease specialist did the blood work and confirmed it. But, to determine if it was active, he recommended a spinal tap. After discussing it with my neurologist I decided not to pursue the spinal tap. The primary reason was because I responded so well to Carbidopa-Levodopa and the belief that my Parkinson's was tied to a closed end head injury where i developed severe perseveration when I regained consciousness (hit by a drunk driver). This happened when I was 50. I have removed deer ticks countless times over my years of running and removing invasive species where we live. Whenever I had an embedded tick for over 24 hours i immediately went on Doxycyclene for several weeks. I never developed the rash, fever or other immediate symptoms.

But, in my mind, the possibility exists that Lyme could have contributed to my neurological problems. i was diagnosed at age 61 and I am now 70. Other than foot dystonia when I wake up my predominant symptom is still a right hand arm tremor. I continue to exercise daily (hiking, some running, biking and cross country skiing) and work full time as a professional in my own business.

Your spot on about Lyme not being easily eradicated. I know many people with severe health problems because the medical community did not properly diagnose Lyme and other tick borne illness when the symptoms first appeared.

Make sure you exercise. Others have shared how this helps.

4 likes
Reply

Just a comment, you do not have to be bitten by a tick to have Lyme disease. Other vectors are spiders and mosquitoes that can carry it to also. The spirochetes can go into hiding for a very long time and pop up occasionally.or it can be a full-blown disease. One can have different symptoms they can Wax and Wane. That is why not just neurological issues but you can have arthritis then it can go in your thyroid and then it can attack your heart. Most of the time it's not just the Lyme disease but it's accompanied by a Co infection of other pathogens.

4 likes
Reply

and all this can be eliminated with positive reaction to leve-dopa?

Reply

not if you have lyme.

Reply

I know someone who was suffering from Lyme and was subsequently diagnosed with Parkinson's as a complication. Perhaps parkinsonism would have been more correct but not in a position to really know.

3 likes
Reply

Have you researched the cowden protocol for treating Lyme? My mom has had Parkinson's 15 years, diagnosed at age 50. We just got a positive Lyme disease test this month, and we needed to ask to be tested. It's extremely frustrating that doctors aren't more adamant about testing for it as it is commonly misdiagnosed as Parkinson's, among other neurodegenerative disorders. I'm just coming on the scene in Lyme research but the cowden protocol seems to have some good supportive literature, not published in mainstream medical journals, of course.

2 likes
Reply

In 2013 I developed numbness and tingling sensation in my fingers and toes. Among few other things I was tested for Lyme by Western Blot - only one band out of 10 came back positive and I was told that I don't have Lyme. In 2014 my son developed some psychiatric issues for which I was trying to find an underlying condition since there were no mental health issues in our family's history. Eventually I took him to a highly recommended MD/ND who ran a number of tests and Western Blot for Lyme came back positive with 2 bands out of 10. The doctor presented us with the Lyme dx saying that according to Dr. Horowitz who is Lyme expert (wrote a couple of books on the subject), if band 23 is positive it is Lyme unless proven otherwise. Then I looked up my results and sure enough my only positive band was #23.

Still I was not 100% sure of this approach to diagnosis and decided to invest money to check for co-infections with IGenex. Turned out both my son and I had co-infections. Then we went on a course of antibiotics that made my son much worse and drained completely my energy which I've always had plenty.

In 2016 I started having left hand tremors (also had frozen shoulder of that arm in 2013), last month went to see neurologist and was diagnosed with PD. Have been taking Rasagiline 1 mg/day. Still not sure if it is PD or Lyme, since it appears that antibiotics are only effective in the beginning of Lyme disease but not chronic.

1 like
Reply

My husband had the Igenex bloodwork done and found he has Lyme. Did the probiotics, low to no sugar, gluten free foods, and an assortment of different antibiotics. Since there was some improvement but not enough, the Integrative Doctors said perhaps this is neurological and should get tested. Went for lumbar puncture and Datscan. Lumbar puncture came out clean/no issues. Datscan shows he has Parkinson's disease and just started meds (for dopamine) a few days ago. Now I'm wondering does he have both lyme and PD? Is the lyme mimicking PD but wouldn't the Datscan show a difference?

Right now we are waiting to see if dopamine meds have any impact on his movement disorder. It's only been a week.

1 like
Reply

Hi! I'm wondering if your husband responded to the dopamine meds? The description of your husband's diagnosis and treatment of Lyme is exactly like my Dad's experience. He was diagnosed in May. We haven't done a lumbar puncture, but his DATscan is positive for Parkinson's. We are of the believe that he does have Lyme, but that it may be causing or 'mimicking' PD. He just starting taking Carbidopa /Levodopa. We're hopeful that his symptoms will improve. How is you husband doing now?

1 like
Reply

I'm concerned because Lyme can cause dopamine loss yet so does Parkinson's. Husband is not on Carbidopa/Levodopa - has an allergy to an ingredient. Instead doctor gave him Ropinirole which is a dopamine agonist which is not converted into dopamine. We are find trying this RX as learned folks with Lyme may also be prescribed this med.

No improvements seen. Increased dosage to 4mg daily. Been on this dosage for 1.5 weeks. No improvement seen. Did develop swollen feet just a few days ago. Have message out to doctor to find out what action to take.

Husband does not have any tremors. Is your Dad experiencing tremors?

1 like
Reply

This also sounds very similar to my mom's experience. She was diagnosed with Lyme in September of 2015 and then Parkinson's in November of the same year. No telling when exposure to the Lyme happened but I'm concerned that long-term Lyme symptoms (chronic Lyme, post-treatment Lyme syndrome - pick your favorite name) may be complicating her Parkinson's symptoms - or maybe causing them. Having a hard time getting her PCP, neurologist and the infectious disease department at the hospital where she is treated to discuss this with me. Her response to the Parkinson's meds have been marginal and her symptoms are progressing. Tips from anyone on how to get the doctors to take this seriously?

Reply

You may also like...