Cause for pots/cfs - chronic lyme?

[sean82]

My experience with meds is that they just control symptoms they dont get at the cause.

I am currently working with Holtorf Medical group in California. They believe 80% of all cases are due to chronic lyme disease.

I cant stress enough that we all have to figure out what the cause is. Controlling symptoms is important while we look for answers.

Anybody here have any experience with treatment for lyme or co infections?

[StayAtHomeMom]

I have no experience with lyme or coinfections but I agree finding the root cause is so important. I am currently working with my pcp to find mine. I am seeing a doc soon to see if my hormone levels are funky, specifically the adreline ones. I suspect hyperpots for myself.

[sean82]

Yes but what holtorf is saying is that cfs and pots is secondary usually to something else. Like you said it could be hormones, infection, lyme, mold, allergies, autoimmune.

Thyroid function is important. Lyme is often missed because a negative on basic bloodwork does not mean you are negative. You need to work with a specialist like holtorf.

Also eating right can help reverse autoimmunity.

[StayAtHomeMom]

I don't know if eating right would reverse autoimmunity but eating right can prevent more types from emerging. My allergist told me once you get one type you will have more as you get older.

I agree POTS is always secondary to something. It is a cluster of symptoms not a disease in itself. Sometimes the cause isn't obvious but it should be throughly investigated. My mom's old pcp told her POTS isn't that big of a deal as long as you take your meds you are fine. That made it sound like it is just seasonal allergies, no big deal. But as a sufferer of POTS I believe it is a big deal. It feels like you are always being beaten with a really big stick, and because no one sees the marks it isn't a problem.

In my journey I have found a lot of doctors that treat 1 symptom. It isnt enough. The whole body should be treated. And if thd patient believes something is wrong they should investigate. Not dismiss them.

Sorry for the rant, doctors and others who haven't experienced an "invisible disease" make me a little crazy. I hope you find your answers. It seems like you may have found a good doctor to help treat you.

[Weyland]

I agree , there is always a root cause to how we got sick . People are not born with pots . We were all normal people at one point in our lives. It disturbs me when physicians just want to treat the symptoms of pots but not try to dig further to see what caused it . 

[CFS with POTS]

I am doubtful that my dysautonomia is from Lyme as I had negative lyme titers done three times over a five year period.  Never had a rash.  I am of the belief it is from a chronic immune reaction to Epstein-Barr infection.  I also had Hodgkin's Lymphoma  and finished treatment about a year before onset of my dysautonomia, so some of my doctor's blame it on peripheral neuropathy from chemotherapy.  I think the common link among Hodgkin's, chronic fatigue syndrome, and dysautonomia is Epstein-Barr.  Would be grateful to hear any other ideas.