Lyme Disease: CDC FAQs

[duncan]

I'm not sure if that is correct @Eeyore .

That misgiving aside, over the last 20 years, if tissue damage were found in an ME/CFS patient, how likely do you think it would be that the damage actually would be attributed to ME/CFS?

 

[Eeyore]

I'm not arguing as to whether or not there might be some damage from ME or not.

What I'm saying is that to date, no one has managed to show that ME causes a particular type of tissue damage. It has not been shown yet - which is why ME is not accepted by some as a real disease. That tissue damage would serve as an objective biomarker to prove illness.

There are individuals that have had various types of damage demonstrable, but no one has succeeded in finding a general pathology that causes the same damage in all ME patients.

 

[SOC]

I think this is analagous to ME patients who go out to get antivirals because they are sure the viruses are the cause, but don't get better with them.

Do you understand how antivirals work? They slow replication, they do not kill the virus. You are still dependent on your immune system to kill the virus-infected cells. If your immune system is doing a very poor job of killing the virus, which is quite possible with immune dysfunction, then you must rely on the natural die-off of the infected cells, which can take a very long time if the virus is continuing to replicate, although more slowly than it would without AVs So it's possible people don't get better rapidly with AVs even if a persisting virus is the cause. Those people could be perfectly correct that they still have virally-infected cells (and symptoms) after fairly long treatment with AVs.

For the record, I think viruses are a major factor in my illness and cause a number of the symptoms. In my case, AVs improve my condition significantly, but do not cure my ME. I didn't expect them to. I expect them to keep the viruses latent, or (in cases of different types of viruses) eliminate the infection until I encounter it again. Before you jump on me about antibodies, let me remind you that not everyone with immune dysfunction has an adequate antibody response to all infections.

So I'm not one of those you look down your nose at "who go out to get antivirals because they are sure the viruses are the cause, but don't get better with them", but I don't dismiss their experience out of hand. I see a legitimate way their experience could be just as they describe. It's not my experience, but that doesn't mean they're wrong about what they understand about their symptoms and their tests.

IMO, the viruses I'm continually fighting are not the cause of ME itself. They mostly likely are, however, the cause of some of the most difficult symptoms, so taking AVs improves my condition significantly.

Try to distinguish between the root cause of ME and the multiple causes of the multitude of symptoms PWME suffer from. They are NOT the same thing. Not everyone who thinks treating infections is important thinks that the infections are the root cause of ME. Most don't, from what I'm hearing. They're intelligent people who understand that treating the cause of symptoms is not necessarily treating the root cause of ME, and know that treating treatable conditions can vastly improve QOL in ME without effecting a 100% cure.

 

[Valentijn]

What if those neurological and immune issues have a root cause within your musculoskeleton?

I don't think there's a solid explanation for how muscle issues might cause swollen lymph nodes, sore threats, headaches, cognitive dysfunction, or orthostatic intolerance.

 

[Antares in NYC]

I don't think there's a solid explanation for how muscle issues might cause swollen lymph nodes, sore threats, headaches, cognitive dysfunction, or orthostatic intolerance.

I'm with @Valentijn on this one.
I could be wrong, but the vast majority of my symptoms are of either neurological or immune nature. Not sure if I'm lucky or unlucky, but I only spent a few months bed-ridden at the beginning of my ordeal. Within 6 months I regained mobility, so I'm in the "moderate ME/CFS" camp, not housebound and mobile enough to work, at great expense of my energy levels and overall health (I do crash over the weekends). Unfortunately I don't have the means to retire or get disability, so I have to work despite the worsening condition. My job is my lifeline to healthcare at this point.

Nothing in me feels like a musculo-skeletal issues is driving this; rather the other way around. I know it may be a subjective POV, but I feel strongly about this: Some of my cytokine levels are out our of control, NK cell count and function way below normal, two IG sub-classes depleted, quantifiable memory and cognitive loss. Not a betting man, but I would put my money on neuro-immune. Whether it is still the borrelia kicking around, or an immune cycle triggered by the infection, well, that I don't know. But I'm convinced the root of this mess is neuro-immune.

 

[Helen]

By the way, this week I met in person two different people (one of them a nurse) who recovered from severe Lyme with long term IV antibiotics.

I just found this post and would like to ask if you got to know for how long time they had IV antibiotics? What could be considered "long time" ?

 

[Antares in NYC]

I just found this post and would like to ask if you got to know for how long time they had IV antibiotics? What could be considered "long time" ?

The person that told me the most about her ordeal was the nurse. She was out on medical leave for nearly two years, severely incapacitated, until they figured out it was Lyme. Her onset was very quick, from being an avid runner to barely able to walk and slurring her speech. She said she had IV antibiotics for about 10 months, but for most people it takes 12 to 18 months of IV treatment, specially those who have been dealing with the illness for a long time without any type of treatment. What I liked the most about our conversation is that she told me her cognitive issues gradually went away, and that her awful experience with the illness prompted her to help and advice others dealing with this nightmare.

 

[GaryK]

I would not disagree with this. Well, maybe a little...

I do not have a science background. I'm not even all that good at Lyme science.

I know the politics of both major camps, though. I know what drives each. I know the biases and strengths and weaknesses. I am familiar with both the mercenary and legacy concerns inherent in each camp. And there are many like me.

What kind of role might a non-science patient assume? That of a watchdog or a referee.

But point taken. I readily concede patients admitted to the process should be qualified scientifically.

There are plenty Patient/Scientist in our community here. One comes to mind on top is Dr. Eva Sapi. Just for starters. These people can easily be that 1/3 representing Patient group. Problem solved!

Gary