Does anyone with CFS get back to 100% ever?

[ebethc]

I've had 2 complete recoveries / remissions when I got back to full on triathlon training and racing. But now it's been over 5 years.

Still, it gives me hope that one day I will permanently recover.

what helped you recover?

2nd.. as a marathoner, you may use a normatec (or similar system)... I've wondered if this could help pain and fatigue b/c doing the foam roller (especially on IT band) really seems to help... BUT there are days I don't want to get down on the floor and roll around , so if I can get a normatec, I would be able to get massage on a more reliable, consistent schedule... I think they're designed to help marathoners recover, based on excessive lactic acid post exercise... CFS'ers have the pain/lactic acid w/o the running! so maybe this sort of thing could help

 

[sometexan84]

Rough day. Reading this forum is so helpful but damn it can be disheartening sometimes. Does anyone with CFS get back to 100% ever? If so does it happen over time on it’s own or only through treatments and supplements?

They do get to 100%, but they're all gone! They left the forum

I'm nearing 100% recovery. When I'm done, I'll post my lengthy story (that will be super awesome!!) and then I shall make my egress as well.

I'm tying up loose ends, to make sure I get to 100% (not 95%), w/ full confidence of no relapse. "Loose ends" for example I haven't officially vanquished all my enterovirus titers yet. There are still a couple of infections I want to test for that I have yet to do (e.g. Coxiella burnetii and HHV-7). My HRV (Heart Rate Variability) isn't quite at normal range yet but getting close.

But overall, I do feel great! I no longer have Hashimotos. I no longer have hypothyroidism. I no longer have psoriasis. I no longer have sleep apnea. Gotten rid of a bunch of infections.

The ultimate test for me will be to exercise again, to make sure I can do it w/out any PEM. But I don't think I'm quite ready to try that just yet, especially because I haven't reduced my enterovirus titers enough yet and exercise exacerbates enterovirus infections.

There is hope! I fully plan on running half marathons again and getting back into resistance training.

 

[IThinkImTurningJapanese]

They do get to 100%, but they're all gone! They left the forum

Of course, and you know this how?

 

[lenora]

They do get to 100%, but they're all gone! They left the forum

I'm nearing 100% recovery. When I'm done, I'll post my lengthy story (that will be super awesome!!) and then I shall make my egress as well.

I'm tying up loose ends, to make sure I get to 100% (not 95%), w/ full confidence of no relapse. "Loose ends" for example I haven't officially vanquished all my enterovirus titers yet. There are still a couple of infections I want to test for that I have yet to do (e.g. Coxiella burnetii and HHV-7). My HRV (Heart Rate Variability) isn't quite at normal range yet but getting close.

But overall, I do feel great! I no longer have Hashimotos. I no longer have hypothyroidism. I no longer have psoriasis. I no longer have sleep apnea. Gotten rid of a bunch of infections.

The ultimate test for me will be to exercise again, to make sure I can do it w/out any PEM. But I don't think I'm quite ready to try that just yet, especially because I haven't reduced my enterovirus titers enough yet and exercise exacerbates enterovirus infections.

There is hope! I fully plan on running half marathons again and getting back into resistance training.

Hi.....Good for you, and you are one fortunate person.

The rest of us continue to muddle along doing the very best we can. In my case I have ME because of other problems, but I realize that and know that no matter what, these symptoms will wax and wane. You're fortunate....you came along at a time when tests were available to separately diagnose your different infections. Such things weren't available during my years. I'm glad that you were able to take advantage of what's now offered. Things keep evolving, both in the larger world and our world. I didn't want to or choose to be in "this place." I was very happy and fulfilled in my life, but I've adjusted and I'm constantly re-adjusting. I hope that your hope for your future will be fulfilled, I don't like seeing anyone suffer, and I ask that have some compassion for those who do. At least read some of the stories, and remember what you escaped. I give you credit for taking initiative with your treatment.

A fellow Texan...Yours, Lenora.

 

[Wishful]

Of course, and you know this how?

Yes, how do we know they weren't abducted by the medical insurance conspiracy to hide evidence? Those treatments were probably very expensive.

 

[sometexan84]

You're fortunate....you came along at a time when tests were available to separately diagnose your different infections. Such things weren't available during my years.

I've thought of that many times. I feel bad for those that got this way before all the newer studies, treatment options, and tests came out. All I can say to that is, like you say, it's important to take advantage and be proactive w/ the tools now at our disposal.

 

[Gingergrrl]

I no longer have Hashimotos. I no longer have hypothyroidism.

I just wanted to clarify, are you literally saying that prior to your treatments you were diagnosed with Hashimoto's by an endocrinologist, you were positive for both Hashi's autoantibodies (TPO and TGAb), and you were taking a thyroid medication to keep your TSH and other thyroid numbers within the normal range but that now you no longer test positive for the two Hashi's Abs, no longer take any thyroid medications, and your thyroid panel is now all within the normal range? I just want to make sure that I understand correctly.

 

[sometexan84]

I just wanted to clarify, are you literally saying that prior to your treatments you were diagnosed with Hashimoto's by an endocrinologist, you were positive for both Hashi's autoantibodies (TPO and TGAb), and you were taking a thyroid medication to keep your TSH and other thyroid numbers within the normal range but that now you no longer test positive for the two Hashi's Abs, no longer take any thyroid medications, and your thyroid panel is now all within the normal range? I just want to make sure that I understand correctly.

I guess so.

Info below. My TSH was high for a long time, I was taking Unithroid and Levothyroixine for a long time as well. Stopped taking thyroid hormone a week or two ago, as it was starting to make me turn HYPER-thyroid, ironically.

T3/T4 have been in normal range for a long time for me though.

Aug 2020
Both Normal


Jan 2020 Results
TPOAb: 132 (ref 0 - 34)
TgAb: Normal


2019 Hashimoto Diagnosis from PCP and later Endocrinologist...
TPOAb: 180 (ref < 9)
TgAb: 3 (ref < or = 1)

Side note: I think way more CFS people have Hashimoto Thyroiditis or hypothyroidism and just aren't aware

 

[heapsreal]

I had a remission of sorts. Id say 95% but still had sleep issues. I was back training at the gym and a few lifts i beat from my pre cfs days.

My decline happened this year after a shortage of famvir so i had 2 periods of no famvir and it stuffed me up. Im slowly crawling out of the hole now as ive been consistently back on famvir for 3 months. When there was no famvir i did go on valtrex but as in past experience i find it just doesnt help much.

I just believe im going to be reliant on famvir forever. I wish they would sponsor me

 

[ebethc]

I guess so.

Info below. My TSH was high for a long time, I was taking Unithroid and Levothyroixine for a long time as well. Stopped taking thyroid hormone a week or two ago, as it was starting to make me turn HYPER-thyroid, ironically.

T3/T4 have been in normal range for a long time for me though.

Aug 2020
Both Normal


Jan 2020 Results
TPOAb: 132 (ref 0 - 34)
TgAb: Normal


2019 Hashimoto Diagnosis from PCP and later Endocrinologist...
TPOAb: 180 (ref < 9)
TgAb: 3 (ref < or = 1)

Side note: I think way more CFS people have Hashimoto Thyroiditis or hypothyroidism and just aren't aware

What do you attribute the changes to? ie, some say gluten triggers autoantibodies in Hashi's

 

[sometexan84]

What do you attribute the changes to? ie, some say gluten triggers autoantibodies in Hashi's

"some say gluten triggers autoantibodies in Hashi's"


I think Hashimoto was (in hindsight) a very small part of my condition. Though getting the diagnosis helped me solves parts of the puzzle. I honestly don't know how much my "Hashimoto recovery" is going to help others w/ CFS. But I will go into detail about it later on. (in couple months-ish?)

I mean, there are so many things that can cause Hashimotos. And I DON'T think it's often based on genetics. And I DO think it's often totally curable. Especially for CFS patients that have it. Cause if you have CFS and you have Hashimoto's (which again, I believe a massive portion of people in this forum have and just don't know it), then it's likely from from bacteria, fungus, or virus. The condition itself might never have formed if you didn't have CFS.

This is just copy/paste from some of my notes on some of this. Notes meant for me, not for others, so just take w/ a grain of salt. As my notes are often geared towards like really specific objectives. For instance, I think EBV is involved w/ Hashimotos more than HHV-6 or at least the same. But at the time I was talking to someone from the HHV-6 Foundation and so yea. Also, I didn't organize them, so, just keep that in mind.

Cause of Hashimoto​

• Staphylococcus or Streptococcus
• coxsackie A, B, echovirus
• 11% vs. 0% (Hashimoto to control) enterovirus RNA in thyroid tissue
• EBV
• High prevalence of EBV infection in Hashimoto
• 33% vs 7% (Hashimoto to controls) active EBV infection
• HHV-6
• 38% of patients with Hashimoto’s disease had active HHV-6A infections
• 41% to 6% (Hashimoto to Control) active HHV-6 infection in thyroid tissue
• 56% vs. 6% (AIT patients to control) markers of active HHV-6 infection in thyroid gland tissue
• 82% vs. 10% (Hashimoto to control) HHV-6 DNA prevalence with FNA
• HHV-6A association w/ autoimmune thyroid disease
• HSV-1 or HSV-2
• 72% of AITD patients w/ herpes virus DNA in thyroid tissue
• HHV-7
• 72% of AITD patients w/ herpes virus DNA in thyroid tissue
• Parvovirus B19
• 86% vs 25% (Thyroid cancer vs. control) Parvovirus B19 DNA found in thyroid tissue
• HTLV-1
• 1 of 2 Hashimoto’s patients HTLV-1 in thyroid tissue
• Yersinia enterocolitica
• 28% vs. 2% Hashimoto patients
• H. Pylori
• 86% vs. 40% (autoimmune thyroid patients vs other types of thyroid patients)
• Dr. Martin Rutherford says H. Pylori he sees the most in Hashimoto

Also, this video is worth a watch if you have EBV or Hashimoto's, or suspect you might have thyroid issues. I don't agree w/ all of what's in the video necessarily. But I do think it could be helpful for some.

 

[sometexan84]

Also, if you are interested in genetic predispositions regarding Hashimoto's, here are some of my notes related to exploring that....

• Dysregulation of Cytokine production can cause autoimmune thyroid conditions
• Gene variations called human leukocyte antigen (HLA) complex can cause Hashimoto’s. AKA HLA alleles
• This HLA study showed CFS patients w/ “HLA risk alleles”, had the following autoimmune diseases, ordered by frequency: Hashimoto’s thyreoiditis/hypothyreosis, psoriasis, rheumatoid arthritis, alopecia areata and Crohn’s disease or ulcerative colitis
• These HLA risk alleles (for CFS) mentioned above include C*07:04 (OR 2.1 [95% CI 1.4–3.1]) and DQB1*03:03 (OR 1.5 [95% CI 1.1–2.0]). C*07:04 was associated the most w/ those having comorbid AID.
• Cyclophosphamide had good results for patients positive for above HLA alleles
• Guttate Psoriasis HLA alleles – HLA-C*06:02 - HLA-Cw6 - HLA-Cw*0602 - HLA B-13 - HLA B-17 - HLA-BW17
• Hashimoto HLA alleles – HLA-DRB1 – DRB1*0301 - DRB1*04:10

 

[Gingergrrl]

Info below. My TSH was high for a long time, I was taking Unithroid and Levothyroixine for a long time as well. Stopped taking thyroid hormone a week or two ago, as it was starting to make me turn HYPER-thyroid, ironically.

It is very common for people with Hashi's to flip between Hypo and Hyper thyroid (especially in the beginning).

T3/T4 have been in normal range for a long time for me though.

Do you mean that your T3 and T4 were within the normal range for a long time without taking any thyroid meds or WHILE you were taking the thyroid meds? I was just curious how long all of your numbers stayed in the normal range (TSH, T3, T4, etc) without taking any thyroid meds?

Aug 2020
Both Normal

Jan 2020 Results
TPOAb: 132 (ref 0 - 34)
TgAb: Normal

2019 Hashimoto Diagnosis from PCP and later Endocrinologist...
TPOAb: 180 (ref < 9)
TgAb: 3 (ref < or = 1)

Thanks for sharing that and I haven't "met" anyone else who had Hashi's and had both autoantibodies go into the normal range! I wonder if it is b/c your autoantibodies were very low to begin with or you caught it very early (or if it is just random)? Your TGAb was only "3" (two points above the normal range) and I wonder if in the beginning they were in the thousands (like mine were) if this would matter? I don't know the answer and my Endo has told me from the beginning that the level of autoantibodies do not correlate with the level of symptoms.

What do you attribute the changes to? ie, some say gluten triggers autoantibodies in Hashi's

My Endo has also told me this from the beginning and he said (I am paraphrasing, and these are not his exact words!) that the gluten molecule is so similar that when the body sees it, it increases the autoimmune attack on the thyroid. I have been gluten free for about 6-7 years for this reason. In the last year I am not 100% strict like I was before although I am still fairly strict.

I think Hashimoto was (in hindsight) a very small part of my condition.

That makes sense from what you described. It was only a small part of my condition, too, although in my case, it was the gateway to the other three autoimmune diagnoses that I later got (in my doctor's opinion and I agree).

I mean, there are so many things that can cause Hashimotos. And I DON'T think it's often based on genetics. And I DO think it's often totally curable.

I hadn't heard of it being genetic vs. that it is always triggered by an infection. Usually by the time it is discovered, the infection is long gone. I have never had a single doctor tell me that it is curable vs. something that you will manage for the rest of your life like most autoimmune diseases. You can definitely have it completely under control with meds so that you have no thyroid symptoms and your tests (TSH, T3, T4, etc) are in the normal range with meds. But my Endo and other doctors have said that once you have it, it is for life.

The condition itself might never have formed if you didn't have CFS.

I do not have CFS. Every doctor that I saw in 2013 and 2014 gave me a CFS diagnosis (and I completely understand why they did) but ultimately as my testing and symptoms became more clear, it seemed that I had a post-viral syndrome (from severe Mono/EBV) that flipped into severe autoimmunity vs. into ME/CFS. I also have several friends with Hashi's who do not have ME/CFS. Although I do agree that there is a lot of overlap with all of these diagnoses and syndromes.

 

[sometexan84]

Do you mean that your T3 and T4 were within the normal range

I've had Free T3 and Free T4 tested many times. I've actually never had abnormal results on those 2.

I wonder if it is b/c your autoantibodies were very low to begin with or you caught it very early

I think both of these things you say are valid.

The gluten thing... all I can say is that for ME... I know gluten or diet or nutrition or anything like that, I know it had nothing to do w/ it. Again, just in my case.

I hadn't heard of it being genetic vs. that it is always triggered by an infection

Wow, I'd always heard the opposite. Rather, there's a ton of stuff out there about autoimmune disorders/conditions and genetic predispositions.

I have never had a single doctor tell me that it is curable vs. something that you will manage for the rest of your life like most autoimmune diseases

Yes, I heard this as well. All I can say is, when a doctor, or even a lawyer says something is impossible, don't take their word on it. It's the most rewarding feeling in the world to succeed in something where expensive trained professionals have told you it is impossible. I don't believe much is impossible.

But my Endo and other doctors have said that once you have it, it is for life.

It doesn't have to be that way for you, just because they say so.

 

[Haley]

I just believe im going to be reliant on famvir forever. I wish they would sponsor me

Likewise with valtrex for me! But at least valtrex is cheaper

 

[Gingergrrl]

I've had Free T3 and Free T4 tested many times. I've actually never had abnormal results on those 2.

That is probably another difference between you and me in that your thyroid numbers and functioning were still normal without medication.

The gluten thing... all I can say is that for ME... I know gluten or diet or nutrition or anything like that, I know it had nothing to do w/ it. Again, just in my case.

I was not talking about the role of gluten in ME/CFS, I was talking about gluten and Hashimoto's. Gluten plays a role in Hashi's b/c many people with Hashi's have a gluten sensitivity. I did not personally have any gluten sensitivity BUT my Endo explained that one of the few (non-medication) things that can help Hashi's is to eliminate gluten. He is as 100% Western medicine as it gets and he believes that gluten can specifically trigger and worsen the autoimmune attack of the thyroid in Hashi's. It relates to how the gluten molecule mimics whatever process leads to the attack. I can find articles on this if you want but I know from your extensive research that you can find them, too

Wow, I'd always heard the opposite. Rather, there's a ton of stuff out there about autoimmune disorders/ conditions and genetic predispositions.

I wasn't saying that there are not genetic links in autoimmune diseases. I was saying that Hashi's is usually triggered by a viral infection that attacks the thyroid and then flips into autoimmunity (but the virus is usually long gone by the time it is discovered).

Yes, I heard this as well. All I can say is, when a doctor, or even a lawyer says something is impossible, don't take their word on it. It's the most rewarding feeling in the world to succeed in something where expensive trained professionals have told you it is impossible. I don't believe much is impossible.

I am literally the last person on earth who accepts something at face value b/c a doctor, attorney, politician, insurance company, etc, told me so. If I had done that, I would not have found my current doctors or been able to do the treatments that saved my life.

It doesn't have to be that way for you, just because they say so.

My current medical status (which will be a life-time work in progress with ups & downs) is not based on anyone telling me whether something can or cannot be done and if it was, I would have given up this fight years ago! I realize that you do not know me but (with the help of several amazing doctors that took me years to find), I went into remission from multiple illnesses and from four years of using a wheelchair 24/7 to having no limitations on the amount that I can walk (except climbing stairs).

I went from anaphylaxis to all food to having no food restrictions and no allergic reactions in over four years. I went from having a caregiver help me at home including taking shower (b/c my muscle strength, breathing, and POTS were so severe) to having all of these issues in remission (although I am currently having 1-2 minor POTS episodes per month). I am currently having Endocrine problems w/pituitary suppression of ACTH & Cortisol which is affecting my thyroid (because you need strong functioning adrenals to maintain good thyroid functioning and I do not have that at the moment). But I am working w/two excellent docs to try to fix this and will do blood tests soon (in spite of insurance denying these tests and in the middle of an appeal). Nothing stops me from pursuing medical treatment and if it did, I would not be here.

But in spite of all that I just wrote, this does not mean that I have the ability to be "cured" or to achieve 100% pre-illness status as you write about in every thread. If you have achieved and maintain 100% cure, that is a blessing that you should thank God for every day. But it is not possible with all illnesses or symptoms (as much as we all wish that it was)!

Like you, I took anti-virals (Famvir and then Valcyte) for almost one year in the earlier days of my illness but they did not help me and actually made me sicker. The treatments that ultimately helped me were autoimmune treatments (IVIG & Rituximab). But many people achieve great improvement from anti-virals like you did. Everyone here is different. There is no one-size-fits-all treatment.

 

[ebethc]

I don't believe much is impossible.

how long were you sick, and how old are you now?

 

[sometexan84]

That is probably another difference between you and me in that your thyroid numbers and functioning were still normal without medication.

This conversation is making me go back over all my old labs to review it all. So, this is actually the first time I've noticed this. Back in 2018, before I knew anything about CFS, and was still going to my regular doctor and complaining about being oddly tired... my PCP had me do some Thyroid tests.

Looks like in 2018, my oldest reading for Free T4 was 0.80 (ref 0.8 - 1.8). So, right on the cusp. I have no idea why they didn't test for T3 or antibodies at that time. But they did do TSH, which was 11.02, which is the highest it's ever been. This was late 2018.

I was not talking about the role of gluten in ME/CFS, I was specifically talking about gluten and Hashimoto's.

No, I know. When I said "all I can say is that for ME", the "ME" was for me, myself, ME... not Myalgic Encephalomyelitis, lol. I was just capitalizing "me" to put emphasis on the "me".

That said, for myself and my own case, gluten has played no role in my CFS or thyroid problems. I have zero food or dietary sensitivities. Though I have no doubt gluten can negatively effect others.

It relates to how the gluten molecule mimics whatever process leads to the attack. I can find articles on this if you want but I know from your extensive research that you can find them, too

hehe, no, I appreciate the offer. For sure. You know, we are all so very different. If it works, then that's fantastic. I just know that for me personally, nutrition and dietary alterations aren't for me.

My current medical status (which will be a life-time work in progress with ups & downs) is not based on the words or opinion of any doctor or human being telling me whether something can or cannot be done and if it was, I would have given up this fight years ago. I realize that you do not know me from Adam but (with the help of several amazing doctors that took me years to find), I went into remission from multiple illnesses and went from four years of using a wheelchair 24/7 to having no limitations on the amount that I can walk (except for climbing stairs).

Um, why are you yelling at me...

But in spite of all that I just wrote, this does NOT mean that I have the ability to be "cured" or to achieve 100% pre-illness status as you write about in every thread.

So, I'm sorry I said that anything is possible?

If you really did read all my threads, you'd also see how I talk about mild and severe cases. I'm mild. And that I believe severe and mild cases are two totally different things. And that I'm very sympathetic to the severe case individuals. I feel very very very very bad for you ok? I truly do. And no, I can't relate to cancer, wheelchairs, or years and years of turmoil. It sux that irreversible damage can be done, and I hate the idea of it. I am very sorry for you, and I don't know what else to say.

 

[sometexan84]

how long were you sick, and how old are you now?

Are you going to yell at me if I answer wrong?

I'm 36. Been sick around 2 yrs.

 

[ebethc]

Are you going to yell at me if I answer wrong?

I'm 36. Been sick around 2 yrs.

I've been sick since I was a kid, and I'm middle-aged now... I've been on a push-crash cycle for most of my life (btw...ARE you recovered, or in remission?) I've been VERY determined about it all, but running out hope lately...