Lyme disease and lymphedema

[Snup]

Does anyone else suffer also to Lyme Disease?

Are lymphedema and Lyme Disease related?

[lovesradio]

Sorry but I wouldn't have thought there was a link or causation, but I could be wrong!

[buddlia12]

Lymphoedema and Lyme disease are unrelated. Lyme dsease is thought to be caused by tick bites. Some peopel do feel it affects the immune system and gives rise to Chronic fatigue symptoms, which some people have found can be helped/eased with manual lymphatic drainage massage. But their is little evidence to support this.

[Snup in reply to buddlia12]

I have some anecdote evidence only.

[buddlia12 in reply to Snup]

interesting... what is it?

[Snup in reply to buddlia12]

People describing that they have swelling after tick bites and/or lyme disease. Also I have found short medical note stating: "spirochetes are changing architecture of lymph nodes" yet I couldn't find more info on that. After all the research I've done I didn't find much more so perhaps you're right that LD and LE are not related. But one day some scientists may discover that there was a link after all.

[buddlia12 in reply to Snup]

Thanks for sharing. Yes I think that's pretty much all I came across too. And of course any infective agent will give rise to localised swelling, but if the parasite infects lymph nodes, as with filariasis, then they would disrupt/destroy the lymph node and lymphatics which in turn would lead to a compromised drainage and cause lymphoedema. I have treated 2 people who had contracted Lyme disease from tick bites. They had no residual swelling, but chronic fatigue symptoms lasting several years.

[Snup in reply to buddlia12]

Yes filariasis is known to cause that. Yet what might interest you - (I'm assuming you're a doctor?) I've discussed this topic with prof Olszewski from Warsaw who examined tissue samples from filariasis endemic regions and he didn't find link between LE and filariasis. I know this is quite revolutionary statement but this man is very serious scientist. I dont know what to think about it, as everywhere you read its stated that filariasis is causing LE.

[buddlia12 in reply to Snup]

That's interesting. I'm a Lymphoedema Nurse , not a doctor by the way. I've read research by Olszewski, though not this specific research. If the limb and genital swelling that some filariasis sufferers is not due to lymphatic failure caused by the damage by the nematodes, then what does cause their swelling?? What is your background BTW?

[Snup in reply to buddlia12]

I'm software engineer. However I'm researching this topic as I have LE. Regarding your question I cant answer in detail - professor was doing examination of my leg and this chat about filariasis was a side talk, I was not pushing also as I doubt that my problem is filariasis based. But what I also understood, he was not saying that LE is not caused by filariasis. He said that he didn't found nematodes in the tissue samples. So if I would have to guess that maybe some toxins or enzymes released by nematodes are causing LE, yet this are only my speculations. I just wanted to add that he has huge experience and knowledge so I wont be surprised if scientists in the future will find something that proves his findings.

[buddlia12 in reply to Snup]

That's fascinating to hear. Thankyou for sharing. How amazing that you have been treated by him. His name appears a lot in the research and yes he is very respected inthis field. I hope you have good advice and help with managing your Lymphoedema wherever you live. All the best.

[B891 in reply to buddlia12]

ncbi.nlm.nih.gov/pmc/articl... Know this thread is old but unless this research has been discredited this statement is incorrect. Research by UC found a link between the two in 2011 and they hypothesised this could be the reason for repeat reinfections/ chronic Lyme as they hide out in the lymph nodes

[Snup in reply to B891]

Thank you brother. The post is old but my issue is still up to date

[B891 in reply to Snup]

Sorry to hear this and good luck! Unfortunately I think the real issue is that more research is still needed, (it was only recognised in 1976) and apparently a third of people who are infected with Lyme's disease never actually develop antibodies to it which makes initial diagnosis difficult. In addition the spirochaeta of Lyme disease are tricksy and capable of altering how they work. You might find this article interesting parasitesandvectors.biomedc...

[Snup in reply to B891]

Not sure if I want to know more about these little devils But seriously - thanks, I'll read both articles you gave me. Good luck!

[Kristenlk]

In case it is interesting and also would be interested in any thoughts ... I have been diagnosed with Chronic Lyme (+B burgdorferi speciation), Bartonellosis and TBRF (lab IGeneX). Woke up one morning with swelling in left foot, ankle and leg. diagnosed with Lymphedema, cause unknown. No family history or risk factors (I have good nutrition and low body weight, no known injury or surgery that would cause damage to nodes or vessels). My doctor who also practices functional medicine believes that the Bartonella caused or contributed to the onset of Lymphedema. She said she has seen this before. I can’t find any support in available research but interesting theory, for what it’s worth. In am in the US.

[MegAnders in reply to Kristenlk]

I just came across this post, I have been suffering with Lymphedema for years in my right leg. I never knew the reason for onset, however I also have a chronic Lyme diagnosis, as well as other autoimmune problems from the Lyme. I’ve been searching for answers for years on what caused the damaged lymph nodes and swelling, so I found it so interesting that you also have Lyme/Bart. How is your leg feeling now? Have you been able to manage the pain/edema?

[Kristenlk in reply to MegAnders]

The onset was May 22, 2019. Since then, after struggling to get a correct diagnosis, I have been able to manage it and remain in stage 1 (so far) through extremely careful and diligent daily maintenance. I use compression constantly and a pneumatic pump for at least an hour everyday. I recently saw a specialist at Rush and had lymphoscintigraphy and lymphangiogram. They have no clue how or why I got this. I don’t know if I agree that bartonella did this but there is no other apparent explanation.

[Snup]

Thank you for sharing. I made some bartonella screening and I'm supposed to not have it. But I know about false negative results. BTW I just camed back from computer tomography of my chest. I have suspected enlarged cisterna chyli which is lowend beginning of thoracic duct. I wonder if that could be tha cause of swelling of my left leg. I should have examination results in 5 days. Perhaps that is the reason of my problems. I wonder if they can do something about it if that is the case.

[claylew]

I don't totally agree with buddlia12 that "Lymphoedema and Lyme disease are unrelated," but it is true that there is a lack of conclusive claims about Lyme causing Lymphodema. For now, there are only claims that Lyme results in Lymphoadenopathy However, there are a few studies and a lot of anecdotal (i.e., patient-reported) evidence about nematodes (i.e., worms, such as those causing filariasis) having Borrelia bacteria that can create excessive lymph problems. That is, worms that are infected with Borrelia have a symbiotic relationship that allows the Borrelia an extra form of protection while the worms make their way through the human lymphatic system. My research found some microscope studies speculating a nematode-Borrelia symbiosis and a few postmortem reports that found Borrelia-infested nematodes in human brain tissue and spinal fluid. The other evidence is mostly from Lyme patients who have had successful recovery results taking antiparasitic medications (mainly Ivermectin) alongside antibiotic ones. So, whether or not that creates the potential for Lymphodema, it looks like we need to add nematodes and the diseases they carry to the list of potential Lyme co-infections that must be explored in addition to treating Borreliosis.