Lyme

[parkie1234]

Just found out I have Lyme-my daughter has it also.

Neurologist says he doesn’t think I have PD. My other dr who tested me got Lyme said chronic untreated Lyme mimics PD.

Any one else test for positive for Lyme??

Relieved 😮. Hope it’s Lyme not PD.

[saraoutwest]

What symptoms do you have Parkie?

[Hikoi in reply to saraoutwest]

No Lyme disease in NZ as far as Im aware.

[saraoutwest in reply to Hikoi]

I've spent a lot of time all over south east Asia and got a strange bite when I was in srilanka then soon after that the tremor started

[parkie1234 in reply to saraoutwest]

Major issue was walking. Very slow. Have to hold on to railings going up or down stairs. Had tremors- rt hand on n off. Can’t smell much anymore. And most worrisome was forgetting meds - within 5 min. Did I take it or not. Worst is did I give my daughter hers or not. Write everything down as soon as I give meds now. Also have horrible to the bone chills on n off for several years. I shake from chills. Heart issues. Orthostatic hypotension- pain in legs like little fireworks going off. And bilateral leg numbness to where I fall if I can’t get to a chair in time. Night sweats. Fatigue so bad I have adderall to function. Rash.

🙄

[parkie1234 in reply to parkie1234]

Also daughter just got out of hospital after 3 days from what was suspected as Steven Johnson syndrome rash- from her antibiotics for Lyme ! She was on morphine for the pain on feet n hands.

[faridaro]

My son got diagnosed with Lyme by an LLD (Lyme literate doctor) and then I had shown to this doctor my Western Blot test done 3 years prior when I was told by a neurologist that I don't have Lyme, but this LLD said that according to some Lyme expert my results indicate Lyme. Well, I questioned his diagnosis and then decided to test for coinfections, since half of ticks carry well known pathogens in addition to Borrelia. And sure enough, both my son and I tested positive for Erlichia which is fortunately easy to treat with Doxycycline, however chronic Lyme treatment is a different story....

But from reading about both Lyme and PD I suspect that a subset of PWPs probably have Lyme, which is called a "great imitator" because it can mimic so many different conditions depending on which body part is affected.

[parkie1234 in reply to faridaro]

I was tested pos for co infection ehrlichiosis also. what symptoms did you have?

[faridaro in reply to parkie1234]

The only symptom I've noticed was low white blood count - 2.7 for several years, which got higher after the treatment. However, my son never had any problems with WBC. So it might be different for each individual.

[silvestrov]

Best of luck with eradicating B. burgdorferi and it would explain a lot of things. It seems like you have limited response to levodopa (in whatever form) and this is not uncommon for Lyme neuroborreliosis. If Lyme is caught early it is easy to eradicate but if it borrows into organs and forms biofilm communities then it is a pain in you know where. I have studied Lyme and am forwarding links with possible (non-pharmaceutical) therapies featuring TOA-free Cat's Claw, Uncaria Tomentosa and Banderol - bark from the Otaba tree.

CURING LYME DISEASE WITH SAMENTO

newswithviews.com/Howenstin...

In Vitro Effectiveness of Samento and Banderol Herbal Extracts on the Different Morphological Forms of Borrelia Burgdorferi

townsendletter.com/July2010...

In vitro evaluation of antibacterial activity of phytochemicals and micronutrients against Borrelia burgdorferi and Borrelia garinii.

CONCLUSIONS:

"The most effective antimicrobial compounds against all morphological forms of the two tested Borrelia sp. were baicalein and monolaurin."

ncbi.nlm.nih.gov/pubmed/264...

Monolaurin is a component of coconut oil:

ppt-health.com/hiv-and-aids...

Baicalein is a aglycone of baicalin from Scutellaria baicalensis. When baicalin is consumed intestinal microbiome bacteria convert baicalin into baicalein and baicalein goes everywhere in the body - including the blood brain barrier.

Baicalin, a prodrug able to reach the CNS, is a prolyl oligopeptidase inhibitor

"The molecule which potentially crosses both barriers was identified as baicalein, the aglycone moiety of baicalin."

sciencedirect.com/science/a...

Since you have neurological symptoms it is obvious that borrelia has penetrated your blood brain barrier and now resides in your brain and spinal fluid. The intrathecal antibody index measures borrelia antibodies in the spinal fluid:

sciencedirect.com/science/a...

Best wishes.

Rich

[parkie1234 in reply to silvestrov]

Thanks I’m looking into a lot of research again for my daughter who cannot take antibiotics - light therapy may be an option- it’s not covered by insurance under Lyme diagnosis though And expensive but hoping it will help

[MylovedhasPd in reply to parkie1234]

look up loyd mear balancing by numbers - i bought the manual. Brilliant ideas. Also helpful is Anthony Williams, Medical Medium. His books are refreshing!

[Mike1942]

Over what period of time does it take Lyme to show up??. I was diagnosed(with PD) about 5years after being " ticked" while running in Scotland. Madopar was ineffective. I run most days and take part in duathlons. This is a bit unusual for PWP to be able to run ?It is starting to make me wonder.

[faridaro in reply to Mike1942]

Lyme can lay dormant for many years and flare up when you are under stress or if immune system gets compromised. So, it is very individual for each of us.

[parkie1234]

I never saw a tick on myself or daughter. I have had numerous medical illnesses for over 10 years. My daughter for 2 years. Ticks are in EVERY STATE- dont be fooled thinking you are somewhere safe. I bought into that for a long time. Drs told me no I wouldn’t have it. No tick or rash - they were obviously wrong. I am starting iv light therapy soon. Hope it helps

[faridaro in reply to parkie1234]

Keep us posted about light therapy results.

[park_bear in reply to parkie1234]

Same deal with a friend of mine – never found a tick nor had a rash, just positive for Lyme pathogens.

[park_bear]

A blog by a friend of mine who has both Parkinson's and Lyme disease: bobcowart.blogspot.com/

[LindaP50 in reply to park_bear]

My husband has both Lyme Disease and Parkinson's Disease.

We were told the Lyme morphed into Parkinson's Disease. But how will anyone really know? He had tests done which showed decreased dopamine. Both Lyme and Parkinson's can have decreased dopamine.

[parkie13]

lymestop.com/about.html

I have had Lyme disease since my late teens. Had no idea why I was always sick. With many many different symptoms not related to each other they would come and go. Please look at the above link that I posted. Dr. Anthony Smith got rid of Lyme disease for me. He also had Lyme disease. He has trained other people so in the world there might be other people trained by him. If you are interested you're going to have to contact his office. He's in Coeur d'Alene Idaho USA. I also believe I have PD disease, unrelated to the Lyme disease. Lyme disease is a lot like Parkinson's disease, everybody experiences something different. Some people might be definitely ill, other people might be borderline and are able to function. Different organs and different systems get attacked by Lyme disease and it moves does not stay in the same place. It can go dormant for quite a while. Compared to Lyme , syphilis which is another spirochete disease is very easy to get rid of. And then again let's not forget the co-infections . Mary

[sisrro]

My mother 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 may be complicating her Parkinson’s symptoms – or maybe causing them? Similar to parkie13, she has difficulty with walking, along with memory loss/brain fog, extreme fatigue, among other things.

I am 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, as they subscribe to the Infectious Diseases Society of America (IDSA) protocol for Lyme treatment.

Her response to the Parkinson’s meds have been marginal and her symptoms are progressing so I have actively started researching other doctors to evaluate her for the Lyme.

In fact, I spent 1.5 hours on the phone tonight with a family friend/retired nurse who has had Lyme validating my concern. She said it's something most definitely worth pursuing.

Any tips on how to follow-up on this would be most appreciated. We are in Massachusetts - ironic that some of the country's best hospitals are in my backyard and doctors are reluctant to consider this a piece of the overall puzzle. Very frustrating!

[parkie1234 in reply to sisrro]

find a lyme literate doctor- google

[parkie13 in reply to sisrro]

You mean Parkie1234. I'm Parkie13.

I wrote the post about lymestop, there is a link up above.

Dr. Anthony Smith's procedure definitely works. He got rid of my lyme and the co-infection as well as his own to begin with. Mary

[JANVAN]

Hi !!

I'm almost in the same situation >>>> sudden onset of PD (in two weeks) what's is unusual.......almost 3 years now.......little improvement on medication......Juin 2017 contacted finally Dr. ARmin Schwarbach, finally a profound Labo-Investigation......Borrelien and co-infections : since then antibiotics and chelators and diet. Still waiting, but my doctor (Dr. Joachim Mutter in Konstanz has said, it can last over more than a year, due to the late start with antibiotics.....).

Here's the link, perhaps you can ask him if he knows people in the US (or where are you living ?) who has he trained (he gives lectures all over the world)....

arminlabs.com/en/about/dr-a...

Greetings from Switzerland !

[Motherfather]

well parkie i have the dreaded pd i went to my doctor about my arm he kept telling me it was nothing he told me to put my right arm out stright in front of me,,no shakes i told him i think i have pd..he said no..i said i want a referal to see a specialist..he give me one and i went to see him..within 10 mins he said i have pd it was that simple..he told me to put my 2 arms out in front of me then told me to wiggle my fingers on my left hand then said now wiggle my right hand at the same time i did,,my left hand was good my right hand was hard to wriggle my left was good..he said john u have pd,

[LindaP50 in reply to Motherfather]

Our first neurologist experience (my husband has both Lyme and PD) after 15 minutes of simple testing his diagnosis "Parkinson's." Went on Cardopa(sp?) but after a few days got very sick. Two years later, after Lyme treatment, went to another Neurologist. DatScan showed loss of dopamine and radiologist diagnosed Parkinson's Disease.

No tremors. Loss of energy. Fatigued if does too much (including walking). Sometimes hard to walk - states his legs feel like rubber.

[park_bear in reply to Motherfather]

Very similar story here regarding MDs. Three different non-specialist MDs failed to diagnose what I now know to be obvious symptoms of Parkinson's. Neurologist diagnosed it on the spot upon an office visit examination.

[Cbgs]

I don't know what to think

I'm being tested again for diff strains of Lyme

I wonder what if I had been diag with Lyme before PD ?

I've been to Dr Okun , Gainesville FL( reknowend PD Dr), as well as 2 neurologist & 2 movement disorder specialists

They've all confirmed PD ....

I'm so bewildered ... and angry.

[parkie1234 in reply to Cbgs]

Get Lyme test from igenex. Specialist always see what they specialize in

[Cbgs in reply to parkie1234]

It's the only place to go!

[faridaro in reply to Cbgs]

If you've had Western Blot test for Lyme look at your results and see if band #23 is positive. According to Dr. Horowitz who is one of Lyme experts "if band 23 is positive, it is Lyme unless proven otherwise". That's how my son and I got diagnosed and later confirmed with test for coinfections.

[Cbgs in reply to faridaro]

Have u been to Horowitz's ?

I've been to his previous partner , Kenneth Bock

[faridaro in reply to Cbgs]

No, I haven't, but my LLD goes by Horowitz' book.

[MylovedhasPd]

I don't know if it could be relevant, but I'm reading good info (see above) that also includes new thinking on Shingles - rash, and non-rash. My dear friend is having light therapy for all over body itch that the doctors can't diagnose, but it occurs to me that shingles might be playing a part.