Lymes: Anyone Had It Misdiagnosed As PD? - Parkinson's Movement

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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?

41 Replies

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.

How accurate is a DAT scan?

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.

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.

I defiantly would be getting a Lyme test . Try taking liquid cats claw herb in good spring water starting with 1 drop 3x a day building over the next 30 days to 30 drops . If you have a Herxhimer reaction u will sure know that you have Lyme as the due off causes those symptoms . Please do your own research on google as many articles relate to this topic as P D is the symptom not the cause cheers

Thanks for the info. What brand of liquid Cat's Claw is good?

I use the HERBAL EXTRACT COMPANY they are in AUSTRALIA but you have to buy from a holistic practioner as they won't sell direct . They are at number 4 SAGGART FIELD RD . MINTO N S W 2566 AUSTRALIA . If u GOOGLE you may find a herbal extract processor in your vicinity that produces this herbal mix . We used to buy from NUTRAMEDIX in the USA and they sell it as SAMENTO but we have found its much cheaper buying this way and a stronger blend .The cost from practioner was around $80 in COFFS HARBOUR N S W and i have it as i was originally diagnosed with an auto immune disease by 5 DRS until i saw a ILADS Lyme literate DR who opened my eyes as to what was causing my sickness and made me well . Cats Claw (uncaria tomentosa) cheers . P S Also you can look up BUHNER PROTOCOL as we have our compounding chemist mix up a similar herbal mix which includes the cats claw and this also detoxes and purifies the body of the stealth pathogens .Please look up tho info for yourself as it may help ,have a lovely day .

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

Samento for Lyme:

Banderol and Samento for Lyme:

Coq10 & NADH for Lyme fatigue:

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.

in reply to healthabc

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

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

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...)

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

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.

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.

in reply to parkie13

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

not if you have lyme.

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.

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.

in reply to jwalz

Hi! I know I'm a little late here but my husband got diagnosed with parkinisom 3 years ago and we have had a positive lymes test come back from private testing but the NHS won't treat him as their test came back negative, just wandered if your mom got treated for the lymes.

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.

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.

in reply to frelin2017

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?

in reply to JenMil

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?

This sounds exactly like what my husband and I are dealing with. He is under 40 and within 6 months went from normal to stage 3 Parkinson's. This started in 10-2016 and it just this month (5-2018) that he has had consistent improvements. We are trying long term antibiotics and trying to control with diet and a ton of suppliments. He is taking Ropinirole and it does seem to help a little but the shaking is still pretty prevalent. At least the brain fog is mostly gone. I wish we could connect to trade notes. This has been very hard, for me as well. Most frustrating is the lack of care available.

Hmmm can we exchange emails on this site or would it be blocked?

(This is Frelin2017 and I signed on today with my gmail account so its a different name!!)

Try taking liquid Cats Claw as it's a herbal supplement 1 drop in pure water x3 times daily building over 30 days to 30 drops . It is natural and kills Lyme bacteria but expect Herxhimer reaction as it kills off bacteria . Please do your research as P D is the symptom of an underlying disease and Lyme is neurological attacking along the Nerve sheath causing havoc as it hoes through your body

in reply to JenMil

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?

in reply to sisrro

Our neurologist is Lyme "friendly" which means he at least listens and believes in Lyme but doesn't have any medical knowledge about Lyme in order to combine Lyme and Parkinson's Disease to provide appropriate treatment.

(This is Frelin2017 but I signed on through my gmail account today)

in reply to JenMil

(from Frelin2017) JenMil,

My husband is on Carbidopa/Levodopa and the only result is low blood pressure. He was taking 2 doses and we had to cut back to 1 dose and watch his blood pressure (102/68). No improvements after 2 months of the med.

We started back on some docxycline and cefdinir (doing on our own - "pulsing" as we have some meds left). We feel my husband has Lyme Disease and Parkinsonism (Parkinsonism was diagnosed prior to Lyme and once he had the DATscan this diagnosis was changed to Parkinson's). Husband does not have any tremors or shakes. DATscan showed loss of dopamine so labeled it Parkinson's disease. However, Lyme also causes loss of dopamine.

He's tried Ropinrole and Gabapentin for the Parkinson's. No changes. Told the Dr we would like a drug that crosses the blood brain barrier (which works for Lyme) and was given Carbidopa.

Keep moving - exercise helps. I tell him you can still walk so keep walking. He just gets tired so easily which is both Lyme and Parkinson's. Who knows? Just have to keep positive and move forward. Soldier on.

There is plenty of evidence online from trained researches that every biopsy from deceased parkinsons patients brain matter always shows spirochete infection and it has been known since the early 1920s

The same with Alzheimer's

I wasn't aware - thanks

The best remedy is Samento and Banderol from Nutramedix but now i just buy liquid Cats claw much cheaper and appears to be a higher strength liquid

Best remedy for what exactly?

Best remedy to kill the BORRELIA which is the bacteria that causes LYME . Please research BUHNER PROTOCOL as well as we also have our compounding chemist mix up herbs similar to his recommendation which includes the cats claw as well ,this is a great way to cleanse the body of pathogens that cause these diseases ,have a lovely day

Thank you for the quick reply.

I will research.

I live in NJ and was diagnosed with Parkinson's through a dat scan Nov 2017, but had noticeable symptoms since Nov 2014. As soon as I visited a neurologist at about May 2015 he sent me for bloodwork on a handful of things including Lyme. I think any decent neurologist would do that. I don't have Lyme, but have a close brother in the church that had it and according to him its never done away with completely, it'll lay dormant and resurface if you don't take care of yourself.

You have to have specialised testing for LYME as normal pathology will always come up negative . PLEASE seek out an ILLADS DR who understands LYME as without his expertise you have no HOPE in even knowing if its LYME or PD .My results were negative until i saw a Lyme literate DR who sent blood to IGENEX in USA and we had a negative, positive result as only 3 out of 4 bands were showing LYME but he said don't be concerned as you have LYME as the politics behind the FDA states you need 4 bands . BORRELLIA GARRINI is what i have as we live in AUSTRALIA and it comes from SOUTH EAST ASIA and is bought in by the migratory MUTTON BIRDS . I recommend that you research BUHNER PROTOCOL as we have our compounding chemist mix up a herbal mix that we take which includes CATS CLAW .Also you may research and buy liquid CATS CLAW from a herbal practioner as it kills all those pathogens that make us unwell so that is the cheapest and most efficient way to find out if you have LYME as you will have a HERXHIMER reaction to it . Please do your own research as thats what saved my life , have a great day cheers

DAT scans can be positive w lymes

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