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What To Do If You Think You Have Chronic Lyme (and my experience with suspected Lyme)

"Chronic Lyme doesn't exist" I hear you say - but the CDC announced last year that in fact Lyme can cause chronic symptoms. Over 700 studies have shown that Lyme and co-infections can persist despite antibiotics.

Many people with PANS find out they have Lyme, even if their initial onset was triggered by a different infection like Strep or Mycoplasma. Lyme disease causes immune dysregulation and can cause neurological and psychiatric symptoms, even without PANS. For people with more chronic and static PANS symptoms that don't seem to get better in the long term with treatment, it can mean that a chronic infection like Lyme or Bartonella is playing a role. Different antibiotics target different infections, so being on antibiotics for Strep won't heal Lyme or Bartonella. In fact, Lyme disease can be somewhat antibiotic resistant due to the bacteria's ability to change into round body forms. Here's what to do if you suspect you may have Lyme Disease. At the bottom of this blog post, I will also talk a bit about my experience as someone who meets criteria for PANS and likely has Lyme as well.

1 . If you struggle financially, seek out a charity like the Lymelight foundation which may be able to help you cover testing or treatment costs. 

2. Get private Lyme testing. Conventional Lyme tests such as those used by the NHS have around a 50% accuracy rate. They were designed to detect Lyme arthritis but not neurological Lyme. Conventional Lyme tests do not look for every strain and they focus on testing antibodies, but people with suppressed immune systems cannot create these antibodies - therefore it will come up with a false negative. Ironically, Lyme can cause immune suppression. 

Good tests include those from Armin labs (particularly Elispot) and those from Igenex and Infectolabs. Make sure you test for co-infections as well. Lyme pretty much never occurs alone. 

3. Seek out the help of a Lyme literate specialist. In the Uk, these will not be under the NHS.  

There are a couple of these in England, one in Northern Ireland, and some good ones in Poland, Germany, and America. People with severe cases sometimes have to travel abroad for treatment. 

4. Read all you can about Chronic Lyme - from learning about antibiotic resistant round body forms, to the studies that show certain herbs such as Cryptolepis can be more effective in killing off Lyme bacteria than antibiotics. Do not trust conventional medical sources as they water down the seriousness of Lyme. Look at Pubmed studies, Project Lyme, and the Johns Hopkins Lyme research. 

5. Learn about the health issues which often co-occur with Lyme. Small Intestinal Bacterial Overgrowth affects around 70% of those with Chronic Lyme, Pyrrole disorder impacts around 80%, many have Babesia, etc. Look at the health issues which can be triggered by Lyme such as POTS, PANS, and MCAS, and learn about the illnesses that can exacerbate issues in people Lyme such as Mould illness, Candida, and Parasitic infections.

6. Conventional medicine doctors will likely try to fob you off with a diagnosis of ME/CFS or Fibromyalgia. These are real conditions, but Lyme can look identical to these so lymies are often misdiagnosed with these conditions and therefore left to deteriorate with no appropriate treatment.

7. Know that a course of antibiotics will not heal Chronic Lyme. years worth of treatments are usually needed such as the Buhner protocol, the Cowden protocol, SOT, BVT, antibiotic combinations, hyperthermia, and treatments for other conditions such as mould illness, parasites, SIBO, etc. If you have Candida, antibiotics could make this worse so it is important to address that first if present.

8. Consider functional medicine testing to assess for SIBO, Parasites, Candida, Metabolic issues, Pyrrole disorder, Mould illness, etc which could be hindering your recovery.

9. Be patient. Treatment will take time and you will have to address a lot of different factors, but slow progress is still progress. 

My experience: When I was 17 years old my tics and OCD returned suddenly with a throat infection. This infection also triggered the development of depressive symptoms, irritability, depersonalisation and derealisation, joint aches, loss of sensation, loss of coordination, brain fog, severe ADHD-like traits, handwriting decline, and many other symptoms. After addressing the throat infection and an infection in my ankle, things got a lot better. This is when I first realised I meet PANS criteria and respond to PANS treatments.

However, around a year later I developed muscle weakness, neck pain, fatigue, POTS, and stomach issues. I was worried I would end up getting a diagnosis of ME/CFS as my post-exertional malaise could leave me in a wheelchair or mostly bedbound for days or even weeks. However, I knew that there were not many treatment options available for ME, so I knew that even if I did get a diagnosis of that - it wouldn't help. I knew that Lyme could resemble ME, and that it was common in people with PANS. I heard someone say that if a person has both PANS and liver issues - they should look into Lyme. I did have both, so I contacted AONM and ordered a Tickplex Armin Labs panel through them. The results came back showing that I had 3 out of 4 positive Lyme antibodies, showing that I either have Lyme disease or was exposed to Lyme-causing bacteria at some point. This made a lot of sense as my symptoms, such as neck pain and neck weakness as well as fatigue and visual changes, did look a lot like Lyme.

I should have got the Elispot test rather than Tickplex, as the one I got looks for antibodies, however not everyone produces these antibodies. It is possible that I have co-infections that didn't show up on Tickplex as they can be better picked up with Elispot. I went to a Lyme clinic and they were absolutely amazing, such wonderful and insightful people. They agreed to treat me for Lyme and said I might have Congenital Lyme based on my history and also said there's a chance that if I have Lyme, it might be chronic...

At this point however I realised that the strong antibiotics from the clinic may not be what is best for me, not right now anyway. This was because I would have to travel for regular blood tests to make sure the medications were not causing any damage (the clinic was not near where I live) and I also knew that antibiotics that strong could damage the stomach and liver. My intuition told me that antibiotics were not going to be the solution for me right now, and my mum agreed. We didn't fully know why but we got the sense it could be harmful to take them.

Around 10 months later I got Organic Acids Testing done which showed a raised Candida marker. Candida can cause stomach bloating (which I had so badly that it was impacting my sleeping and breathing) and can get worse with antibiotics. At this point I was relieved I decided to go down the functional medicine root first rather than just jumping straight into using strong antibiotics. The raised Candida marker makes sense as I knew anything containing sugar made me GI symptoms flare, and when I went back to look at my other food triggers... I found out they contain yeast. This made a lot of sense because sugar and yeast feed Candida and can make it worse. I am now going on an anti-candida diet to see if it helps.

But to manage the Lyme, what have I done? Studies have shown that certain herbs can help kill off Lyme bacteria, and some (such as Cryptolepis) can even be more effective than antibiotics! Johns Hopkins research will be good to look at to learn more about this. I have been on a herbal Lyme protocol for around 9 months, thankfully most of these herbs didn't feed Candida as they had anti-fungal properties as well as anti-microbial properties. From using a mix of herbs from the Buhner and Cowden protocol for this long, I experienced around a 20% improvement. This may not seem like a lot, but considering how severe my symptoms were it is actually pretty impressive. My muscle tone is more normal now, I have less episodes of loss of sensation, less neck pain, much less nausea, and my flares aren't as severe.

I am still very much ill and disabled, but I am still better than I was. I am hoping that addressing Candida will help. I am looking into getting low dose Naltrexone prescribed soon because it can help reduce autoimmunity and inflammation, and in the future if I can ever afford it I would be interested in looking into SOT for Lyme which you can get in Poland.

This is my story so far, I hope that one day it can be one of true healing.


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