Now My Sister has CFS/ME…

[SB_1108]

I’ve had CFS for about 6 years now. My Sister is 9 years older than me and until a few months ago, she was relatively healthy and extremely active. She has a very successful career, owns multiple homes and enjoys a lot of water sports/activities. In the past few years I’ve noticed that she was getting sick ALL THE TIME!

A few months ago she got sick and has not recovered - symptoms include: unrelenting fatigue, headaches, stomach issues, etc. All the typical stuff. She is on short-term disability right now - just trying to rest/pace.

I always felt like IF I had not pushed myself in the beginning, that I would have probably made a full recovery. However, after I got sick I pushed myself for about 3 years until I completely crashed. So I’ve been providing all advice and knowledge that I’ve gained after all these years of being sick. This includes 23andMe Testing/MTHFR mutations, vitamin B, etc. Also other various supplements that have worked for me: digestive enzymes, magnesium, glutathione precursors.

What (if any) advice do you have for her?

 

[SB_1108]

Oh I want to add that for years I thought that CFS was a bacterial infection but after she got sick too, I'm starting to second guess that theory and think that it is more of a genetic mutation.

 

[minkeygirl]

The quicker she gets to a doctor who knows what he or she is doing, gets labs to see what is "broken" , gets w diagnosis and starts what ever treatment fits, the better. And rest.

I wasted years not getting treatment and I am paying the price.

 

[alex3619]

One thing that is always good advice, its not as easy as it sounds, but its free - pacing. Work within the limits, and rest or break up activities. It sounds like you have already suggested that, but I think its something that has to be looked at again and again. Its soooo tempting to do too much. I did that too and got worse and worse, though this was before I had ever heard of pacing.

 

[SB_1108]

The quicker she gets to a doctor who knows what he or she is doing, gets labs to see what is "broken" , gets w diagnosis and starts what ever treatment fits, the better. And rest.

I wasted years not getting treatment and I am paying the price.

@minkeygirl - Can you elaborate a little on this? I'm still looking for the right treatment that fits. So I would love to hear more about your experiences.

@alex3619 - Thank you for the reminder! Never can get enough pacing!!

 

[minkeygirl]

From what I read you don't have a diagnosis. It's just your thinking she had ME but don't even know how or why. Even if it is genetic it may not be the same as yours. So that would be the first thing to do. Get information and and diagnosis. Otherwise you're flying blind

I don't know where you are or what insurance your sister haS but at least to start find a doc who is willing to run a bunch of labs. Chia, Kaufman, Enlander. Levine are ME specialist but Any willing doc can run labs.

Look for @hips roadmap. It's a step by step guide.

Also, what works for you may not work for her. There is no one size fits all treatment. If she has virus, that's one thing, infections are another.

There are much smarter people here then me. Others will chime in but it seems you have no idea what is going on with her so anything you do is just guessing.

I had no medical care for years. Even now what I have is ok but not great. The sooner she gets on the right paths the better her chances for recovery.

 

[Tammy]

Along with what others have already mentioned I would recommend she get tested for EBV.

 

[Firefly_]

I have to add that you can have all the tests in the world but if you don't have a dr that knows what to do with the results...

 

[SB_1108]

@Tammy - she has been tested for EBV and it was positive. But from my own personal experience, thats fairly standard for pretty much everyone that has CFS. She took several weeks of high dose Valtrex without any results.

@minkeygirl - Thanks for the information. She has not necessarily received a diagnosis - honestly I didn't get a "diagnosis" until about 3 years into it (I wish I had known sooner). Again, I think thats pretty standard for most CFS patients. But its been several months since her initial onset of symptoms. Her primary care physician ran numerous tests (EBV was the only one positive).

In addition, she will need to keep her savings as opposed to visiting "specialists" because after her short term disability ends, she may not have an income. She did contact Dr. Lapp and he was booked up until next year.

When I was initially diagnosed, I spent $10k of my savings at a local CFS specialist and that was money well wasted that I'll never get back. Recently I spent several thousand flying to NYC to see Dr. Enlander and at this point, that was also a waste (as I didn't seem to tolerate any of the treatments).

 

[Tammy]

I wouldn't give up on treating the EBV................I think this virus gets under-rated in its connection with CFS. There are things other than Valtrex that can work against this virus. I'm currently on a protocol and part of it is focusing on EBV and am pleased to say that I am seeing some improvement. Very subtle improvement but that's OK...(been ill for 19 years).........I'm early in the protocol and have not yet reached the doses that I am working towards.

 

[SB_1108]

@Tammy - What antivirals are you on?

 

[Tammy]

Not all the supplements I'm taking to work against the EBV are anti-virals but some are. I'm taking Cats Claw (Uncaria tomentosa), L-lysine, licorice root extract (Glycyrrhiza glabra), zinc and Vit. C.......the other supplements I take are methylcobalamin, adenosylcobalamin, spirulina and barley grass juice powder. Nothing earth shattering!........ but this combo seems to be working for me. I didn't realize until not too long ago that licorice root was considered an anti-viral and specifically good against EBV..........I always thought it just helped with the adrenals.

 

[Valentijn]

Oh I want to add that for years I thought that CFS was a bacterial infection but after she got sick too, I'm starting to second guess that theory and think that it is more of a genetic mutation.

It's probably both ... a genetic predisposition which is exploited by various infections.

 

[Aurator]

Perhaps you'd be good enough to direct your comments primarily at the many other people similarly claiming, on spurious grounds, that CFS can be successfully treated using their own particular form of treatment. Once you've thrashed the matter out among yourselves and decided who, if anyone, out of all of you is actually right, please come back and let us know.

BTW, in English we don't "eat medicine" (吃药); we "take" it.

 

[jess100]

Were either of you tested for tick borne illnesses? I went to about 9 doctors and none of them even thought to test for Lyme, although my area is very high in Lyme cases. Then after reading here that there are several other tick borne illnesses I went to Dr. Kaufman who ran tests for many of them (as well as viruses and mutations). Turns out that I have at least 2 tick borne (babesia and anaplasma) and possibly bartonella. I also have active EBV and CMV and some other viruses. So if they have run a crappy test for Lyme and don't know what they are doing-either or both of you could have this or other tick borne illnesses and they will still be saying you don't have it.

My boyfriend is ALSO now sick-tired all the time, etc. And I'm quite sure he got it from me He was also very healthy and athletic before this. So the question becomes is a reactivated virus contagious? Are any of the tick borne illnesses contagious?

First is a diagnosis-Others here have mentioned good doctors who are thorough and are really looking for what is making you sick. Other doctors run a few tests and throw up their hands. That is not going to work.
I wish both of you the best

 

[digital dog]

Immune boosters?

 

[LivingwithFibro]

Where are you based? You must see a CFS specialist asap.

 

[minkeygirl]

I had good luck with acyclovir. Theres other antivirals To try

Saving money and treating this don't go hand in hand but imo I wouldn't spend a
My life savings snd I don't think you have to.

No one here can diagnose anything. Until you know for sure you're just flying blind.

Any competent doc can order labs and without w clue as to what is going on besides EBV you have no idea where to start.

 

[jess100]

Not all the supplements I'm taking to work against the EBV are anti-virals but some are. I'm taking Cats Claw (Uncaria tomentosa), L-lysine, licorice root extract (Glycyrrhiza glabra), zinc and Vit. C.......the other supplements I take are methylcobalamin, adenosylcobalamin, spirulina and barley grass juice powder. Nothing earth shattering!........ but this combo seems to be working for me. I didn't realize until not too long ago that licorice root was considered an anti-viral and specifically good against EBV..........I always thought it just helped with the adrenals.

Tammy How do you take the licorice root? In a tea or ??

 

[wintersky]

I had good luck with acyclovir. Theres other antivirals To try

Sorry for this one more post as i just saw minkeygirl's post about using acycloir successfully. Acycloir, from the herb Prunella Vulgaris, is known in Chinese Medicine as Xia Ku Cao and is one of the very few herbs used to cure CFS Broad pattern 6 in Eastern Medicine due to heat toxins.... Check out the herb functions (Part B in the link below, talking about resolving heat toxins). I have named, so far, licorice, barley, Acycloir as mentioned by others here.

http://old.tcmwiki.com/wiki/xia-ku-cao