In previous posts, I discussed POTS syndrome (postural orthostatic tachycardia syndrome), what it is, how it’s diagnosed, and some POTS treatment approaches. In this article, I’ll discuss some research that made a link in between POTS and lyme disease.
What’s Lyme Disease Got To Do With POTS?
Lyme disease is an illness that can develop after a particular form of a tick bite. It is a disease that affects many organ systems including the nerves, heart, and muscles. It begins as a rash known as erythema migrans that develop after the tick bite. Usually, lyme disease responds to antibiotics; however, there is a group of patients that develop what is known as the post-Lyme disease syndrome. This is a syndrome of fatigue, pain, and mental clouding known as “brain fog” that can severely affect someone’s quality of life. A piece of research by a group of US investigators from Ohio demonstrated a link between POTS and lyme disease by investigating patients with Lyme disease and the post-Lyme disease syndrome who also suffered from POTS syndrome.
A Study on Correlation between POTS Syndrome & Lyme Disease
The study included 5 patients who develop fatigue, orthostatic intolerance, and cognitive dysfunction years after having Lyme disease. Symptoms included dizziness and passing out in some, fatigue, poor exercise tolerance, headache, mental clouding, and palpitations. All of the patients were so limited they were essentially housebound. Testing including clinical exam and tilt table testing were used to diagnose POTS syndrome.
The group who were well experienced in the care of POTS syndrome patients treated patients with standard protocols. Physical training and increased sodium and water intake were used. If the symptoms of P.O.T.S persisted then medications were used, with a different combination of medicines used as felt necessary on an individualized patient basis. Treatments were considered successful if there was symptomatic improvement.
All of the patients responded to treatment of the POTS syndrome. All patients had improvement in the orthostatic symptoms, particularly fatigue. Three of the patients had complete disappearance of passing out episodes and the other two had a much-decreased frequency. Four of the five patients were able to resume usual daily activities.
Demonstrated Importance Of Treating POTS Syndrome
This study showed that in patients that have had Lyme disease. POTS syndrome was a clear component of the post-Lyme disease syndrome, a syndrome that can appear. Recognition of POTS syndrome was important in this group because once identified, the appropriate treatment of POTS syndrome resulted in improvement in disabling symptoms and quality of life. Physicians should therefore have a high index of suspicion for POTS syndrome in those with post-Lyme disease syndrome. It’s not possible to tell from this study just how many patients with post-Lyme disease syndrome may be affected, it may only be a few percent of patients. Importantly though, it was clearly demonstrated that a targeted and systematic treatment approach can significantly improve the quality of life for those with POTS syndrome.
To find experts in POTS around the United States check out XpertDox.
Are there any doctors that specialize in this that take insurance? Everyone I’ve called has said no.
Look on Lyme.net
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My daughter had POTS as one of the very earliest Lyme symptoms and although she does not anymore for the most part, she has severe fatigue and brain fog now after treatment. I’d like to see a link to read the study. I suspect that far more information is needed and I want to understand the methodology of the study, sample size, etc and see what information leads to the conclusion drawn.I would like to understand what treatments were used to improve the symptoms? If they used both exercise, then how much and underwhat conditions? If they used salty foods AND exercise, how do we know which one helped?
i have had chronic lyme disease for years some of those years were undiagnosed. i have just been made aware of POTS so i dont have an answer for you but i do have a great lyme disease doctor in the seattle area if you are need of one.
Who would that be. My daughter just diagnosed with pots and Lyme.
Thanks
Deb
Dr Golan
Who would that dr be in Seattle
Please tell me drs name
Find a Lyme Specialist if she has not treated with one. There are blogs and threads of people who have been infected by ticks and understand that the CDC guidelines for treating Lyme is far below what is actually required. There are Co-infections and heavy metals that these little buggers carry that are not effected by the typical Doxycycline or one antibiotic regiment.
Were your questions ever answered?
Is there any Dr’s in the Louisville, Ky area that specialize in POTS & poss. LYME disease association ???
Have you been treated by a Lyme Specialist? If not I suggest you find one. The CDC recommendation for treatment is typically a lot less than what most people require to rid themselves of the pesky spirocete, Lyme.
I am a lyme / POTS person. I went to many doctors with little to no help. Then it almost seemed as if I developed Mast Cell Activation Syndrome. I work in research and ended up studying this topic into shreds. I personally did the doxy for a month at the time of diagnosis but these other problems came years later and came on slowly, though I never felt better after the initial infection. It got to where a flight of stairs and I was passing out. Always do your own research, consult with medical etc … but for me… I took Arteminisin for one week on, two off for nearly a year and felt dramatic improvement. I also changed my diet. I have been veg/ vegan most my life and got rid of grains for years as they were chronically causing problems. Occasionally I use Benadryl at night (dye free only), and take Quercetin once daily. I also walk 30 min upon waking and 30 min after dinner – everyday no excuses now that I can (had to work up to this) and I notice very quickly if I skip a day. I have reclaimed my life which I thought was gone forever. I only post this as a information for those going through it. I believe each person is effected differently but I really wish I had ANY guidance throughtout my long journey. I was diagnosed in June 2000 and did have the bullseye rash – also spend great deal of time in the backwoods of PA, NY, NJ and VT all hot areas. I started to feel better around 2016 – after a long slow demise. I wish everyone the best! I hope this holds up for me and I hope you all find what works for you.
Hi!
Thank you so much for sharing. Do you raccomend a specific Lyme desease doctor?
I am desperately looking for one
Hi,
My son is having similar symptoms as you regarding the POTS and is taking supportive supplements. He had a Lyme diagnosis in 2017 and the POTS symptoms started flaring recently after 8 months of antibiotics in 2019. He did contract Covid-19 in July and that’s when the Mast Cell and POTS symptoms slowly started kicking in. Thyroid issues, BP spikes, heart palpitations, etc… We did Crypto-Plus for a little over a month. I’m wondering if pulsing Arteminisin would also help him. Did you have a stool test to confirm parasites first and wondering if a Lyme doctor assisted you or did you do this yourself. (I was curious because I heard liver enzymes should be monitored on a supplement like that).
Thanks so much! Glad your doing better.
My son is having similar issues with POTS after 8 months of antibiotics. Have you ever found anything that has helped your son? Thanks so much and God Bless!
Thanks! Is there a link to the research that was performed? Curious if it was Grubb or someone doing the research.
Interesting, there’s a doctor in Canada; that believes that POTS came from the Covid virus. I know in fact that pots has been around a lot longer than just since Covid like you’ve seen and experienced. You linking it with Lyme disease and tick bites is interesting because I used to be an avid outdoor person, Before I got ill. I can no longer eat red meat like alpha gal syndrome. I was diagnosed with Elhers-Danlos, POTS and MCAS this year. I have been suffering with these symptoms for my entire life. As well as one of my life long friends. She was Diagnosed with POTS 16 years ago.
A few important things to consider (all of which may further complicate treatment):
1. Lyme creates living biofilm which they believe acts as a protector (good place for Lyme to hide from antibiotics) & likely why Lymies dont feel/get better after treatment, Biofilm must be treated, broken down, killed.
2. Lyme most often comes w/ multiple co-infections which can interfere w/ successful treatment. These coinfection’s are often just as difficult to diagnose & treat as Lyme, They often all have the same symptoms.
3. Antibiotic treatment works when JUST infected AND treatment is sought immediately using ILADS protocol. But if not treated immediately, it can be a devastating lifelong, miserable chronic illness.
4. Unless *proper* treatment is sought immediately, it is NOT easy to treat. There a massive amount of gaslighting in the medical community (friends and family too) about *chronic* Lyme. Patients have to educate & advocate for themselves. This article incorporates some of that by calling it a syndrome (although other areas describe it well). Lyme disease is not a syndrome – which is the invalidation whistle. It’s an infectious DISEASE which is real and a living nightmare to have. Most doctors only consider IDSA protocol so *chronic* patients dont get better, only feeling improvement after seeking a “Lyme Literate” doc. Theres much dispute between IDSA vs ILADS, and for good reason. All sources of info must be considered bcuz theres too much conflict of interests and scientific data data ignored for both diagnosis & treatment of *chronic* Lyme. Its become political. *Chronic* conditions might need antibiotics to cross the blood brain barrier, which not all will do. Might need two antibiotics simultaneously, one to kill outside the cell & one inside the cell.
5. Anyone dealing with a tick borne disease should immediately consider seeking a “Lyme Literate” doctor (LLMD/LLDO/LLND)(Search the web for “lyme literate doctor referral”). Many LLMDs are harassed which is why you dont find referrals posted on the web (they’re protected bcuz theyre often the only ones helping ppl get better).
6. Incorporate herbal treatment (often tinctures), etc. It may be more effective than antibiotics for *chronic* infections. Simultaneously w/ antibiotics or possibly without.
7. Requires paying out of pocket for nearly, if not all, LLMDs/LLDOs/LLNDs thanks to the IDSA. Doctors, medications, testing – all expensive.
8. Not all laboratories are equal, Igenex tends to be many LLMDs first choice for valid reasons.
9. Only abt 30% of infected ppl ever experienced the Erythema migrans rash, and many do not recall ever being bitten or seeing any tick.
10. Many feel COVID is the cause of POTS, but POTS was around long before COVID was a thing. Maybe COVID is just another pathogen, like Lyme, that can also trigger POTS and other auto immune conditions??
My opinion.