A Chronic Fatigue Syndrome/POTS Patient Responds to a Multiple Sclerosis Drug - What Does It Mean?

E

EYAKLLE

Guest
Can you or she be more descriptive about this? I'm interested in what this might mean? So the lesions where there initially, went away, and then came back?

GG
Likewise interested for more info.
 

GG

Well-Known Member
I cannot be without my inmune modulator, I use imunovir + inosisne
Mine is low dose Naltrexone (LDN), my insurance is not covering it compounded. Trying to get a Dr to prescribe in 50mg tablets and I can do the math and make it into 1mg/ml solution. Might resort to buying it online!

GG
 

Cecelia

Active Member

Some answers may be found in this lecture by Dr. Anne Louise Oaklander of Harvard and Mass General Hospital. Her work on Small Fiber Polyneuropathy shows how extensive the effects are from this type of nerve damage, which until recently was not studied, even though non-myelinated nerves are nearly everywhere and may make up over 80% of an axon which includes a myelinated fiber. POTS, autonomic dysfunction of every kind, aching, fatigue, cognitive issues, weakness light sensitivity, GI symptoms and most of the other symptoms of ME can be caused by this type of neuropathy. That is my memory of what she said. The effects of small fiber neuropathy go far beyond the conventional idea of numbness or burning in the feet. These nerve fibers are supposed to regulate blood vessels and service organs and tissues all over. When they do not, the affected organs and tissues cannot work properly. The causes for this type of nerve damage can be autoimmune illnesses, toxic exposure and many other known and unknown factors. She speculated that osteoarthritis too could get off to an early start with this type of nerve damage. Two effective treatments she referred to were corticosteroids and IVIG, but I expect others are applicable too.

Cort, it would be wonderful if you contacted her for an interview and shared some of our information too. She seems to be a pioneer, making discoveries which could be very useful to us.
 
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Rachel Riggs

Well-Known Member

Some answers may be found in this lecture by Dr. Anne Louise Oaklander of Harvard and Mass General Hospital. Her work on Small Fiber Polyneuropathy shows how extensive the effects are from this type of nerve damage, which until recently was not studied, even though non-myelinated nerves are nearly everywhere and may make up over 80% of an axon which includes a myelinated fiber. POTS, autonomic dysfunction of every kind, aching, fatigue, cognitive issues, weakness light sensitivity, GI symptoms and most of the other symptoms of ME can be caused by this type of neuropathy. That is my memory of what she said. The effects of small fiber neuropathy go far beyond the conventional idea of numbness or burning in the feet. These nerve fibers are supposed to regulate blood vessels and service organs and tissues all over. When they do not, the affected organs and tissues cannot work properly. The causes for this type of nerve damage can be autoimmune illnesses, toxic exposure and many other known and unknown factors. She speculated that osteoarthritis too could get off to an early start with this type of nerve damage. Two effective treatments she referred to were corticosteroids and IVIG, but I expect others are applicable too.

Cort, it would be wonderful if you contacted her for an interview and shared some of our information too. She seems to be a pioneer, making discoveries which could be very useful to us.
Likewise interested for more info.
@Cecelia Thanks! It all makes sense now - so many seemingly unrelated symptoms - but one umbrella!
 

Rachel Riggs

Well-Known Member
Likewise interested for more info.
@GG Yes - I'll tell you what I know, which is simply that I only had one or two lesions but they disappeared. Other things including migraines, I'm told, can cause lesions. They always want to repeat MRI's annually to check for disease progression and when they did another MRI, it was gone! And that same pattern of having a lesion that later disappeared was repeated the following year - happened again.
 

Rachel Riggs

Well-Known Member
@Rachel Riggs

I bit more dangerous? Lol? I wouldn't go near Rituximab with a ten foot pole, and I'll try pretty much anything. For those of us with chronic infections this is the last thing we need.

And it won't be available for who knows how long? 4-5 more years? I sure am not waiting around for them to figure this out.

You mean the Copaxone needs to be explored further?

@Strike me lucky add this to your list of things to try.
@Who Me? Yeah - I'm not willing to take Rituxan, I have ENOUGH problems. hahha
 

Rachel Riggs

Well-Known Member
Since being officially diagnosed with CFS in July (2015) at the Mayo Clinic, I now see Katie, one of Dr. Montoya's PA's at Stanford. I've recently started on LDN and will be starting Valtrex in 6 weeks after I'm stable on LDN. I'd love to hear of any positive effects from those treatments if anyone else is following that same protocol!!
 

GG

Well-Known Member
@GG Yes - I'll tell you what I know, which is simply that I only had one or two lesions but they disappeared. Other things including migraines, I'm told, can cause lesions. They always want to repeat MRI's annually to check for disease progression and when they did another MRI, it was gone! And that same pattern of having a lesion that later disappeared was repeated the following year - happened again.
So did they check again down the road, years later, just to make sure the No Finding of lesion was not a fluke?
@Rachel Riggs Thanks for sharing your story, very interesting!

GG
 
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Rachel Riggs

Well-Known Member
@GG Yes - gosh I had MRI's in 2009, (x3) 2010, 2011, 2012, and 2015 when I got to the Mayo Clinic. They made the final determination that I had been misdiagnosed.
 

KweenPita

Active Member
We figured out my POTS episodes are tied into my electrolyte balance, at first we thought it was just simple dehydration, because I have 2 doctors thinking maybe I am a low blood quantity creature. But if I drink a couple Gatorades my BP comes right up. And on the Pure Formula, vitamin site, Dr Ben has a "Ade" recipe for people like us. The ingredients are expensive because they come in bulk sizes so I am sure you can get them of great quality of other places reasonably. I know I will be checking Amazon.


. Is my body now mimicking pseudo CFS, if I go out and about have a good busy day, I will wake glands swollen, sore throat and so tired I can't get out of bed and sleep for a couple days. This started after a bad sore throat, glands swollen, armpits swollen and spleen tender. That lasted 10 weeks. They of course tested for Mono and Epstein Barr, both negative. But now pops up every time I overdue. I am the best hypochondriac in the world, I can make my glands swell, my pores bleed, and kidneys fail. Oh and BP drop to 60/40 or so low it won't register YOU get fast Service in ER then!
 

KweenPita

Active Member
@GG Yes - gosh I had MRI's in 2009, (x3) 2010, 2011, 2012, and 2015 when I got to the Mayo Clinic. They made the final determination that I had been misdiagnosed.
I have always felt I have been misdiagnosed. My Dr for last 15 years loves what I right under "other" "We don't know what the eff it is, so let's call it Fibromyalgia"!
Hi @EYAKLLE - My MS specialist (a Harvard trained Neurologist) feels that 25% of those diagnosed with MS actually have been misdiagnosed and have CFS instead - particularly those who experience fatigue as their primary or most troubling symptom, as I do.

@EYAKLLE, I don't think Cort's point, or this story, is at all about a misdiagnosis. Rather, it's about the drug Copaxone and my accidental discovery that it may work for CFS. It is similar to Rituxan in its action yet considered relatively innocuous - whereas Ritan is recognized as a bit more dangerous. It's a promising treatment option that needs to be explored further...
They were just positive I had MS after two years of test but no spinal hmmmm, Fibromyalgia with inflammation unknown origin.
 

ShyestofFlies

Well-Known Member
Mine is low dose Naltrexone (LDN), my insurance is not covering it compounded. Trying to get a Dr to prescribe in 50mg tablets and I can do the math and make it into 1mg/ml solution. Might resort to buying it online!

GG
Hey I'm not sure how your body would do with a little wellbutrin but if you can't get the naltrexone any other way you might beable to get contrave, 80mg welbutrin, 8 mg naltrexone and split it up. Some people have some more energy from wellbutrin but on label it is a atypical antidepressant, tho at that small of a dose its used for mild weight loss, energy, and sexual side effect reversal for other meds. Just a possibility to consider if you can't get the naltrexone any other way!

Some answers may be found in this lecture by Dr. Anne Louise Oaklander of Harvard and Mass General Hospital. Her work on Small Fiber Polyneuropathy shows how extensive the effects are from this type of nerve damage, which until recently was not studied, even though non-myelinated nerves are nearly everywhere and may make up over 80% of an axon which includes a myelinated fiber. POTS, autonomic dysfunction of every kind, aching, fatigue, cognitive issues, weakness light sensitivity, GI symptoms and most of the other symptoms of ME can be caused by this type of neuropathy. That is my memory of what she said. The effects of small fiber neuropathy go far beyond the conventional idea of numbness or burning in the feet. These nerve fibers are supposed to regulate blood vessels and service organs and tissues all over. When they do not, the affected organs and tissues cannot work properly. The causes for this type of nerve damage can be autoimmune illnesses, toxic exposure and many other known and unknown factors. She speculated that osteoarthritis too could get off to an early start with this type of nerve damage. Two effective treatments she referred to were corticosteroids and IVIG, but I expect others are applicable too.

Cort, it would be wonderful if you contacted her for an interview and shared some of our information too. She seems to be a pioneer, making discoveries which could be very useful to us.
I gotta say I am very interested in hearing about this researcher's work as well. I have heard small fiver neuropathy is a possiblity for fibro too, I wonder if damage is being done there in all neuroimmune disorders?
 

ShyestofFlies

Well-Known Member
I have always felt I have been misdiagnosed. My Dr for last 15 years loves what I right under "other" "We don't know what the eff it is, so let's call it Fibromyalgia"!

They were just positive I had MS after two years of test but no spinal hmmmm, Fibromyalgia with inflammation unknown origin.
I thought one of the keys to diagnosing fibro was that there supposedly was no inflamation? I'd appreciate if they'd make up their minds lol
 

Who Me?

Well-Known Member
@GG. Look in resources under supplements and medications. I posted some online pharmacies. 2 I know for sure have the 50 mgs naltrexone. I think it's the first 2 I posted. About $20 for 10 plus shipping.

I could never take the what shyest says. Brain meds really screw me up.

Contrave is scary sh*t with tons of contraindications. I'd never use it as a substitute for LDN.
 

GG

Well-Known Member

GG

Well-Known Member
Hey I'm not sure how your body would do with a little wellbutrin but if you can't get the naltrexone any other way you might be able to get contrave, 80mg welbutrin, 8 mg naltrexone and split it up.

Some people have some more energy from wellbutrin but on label it is a atypical antidepressant, tho at that small of a dose its used for mild weight loss, energy, and sexual side effect reversal for other meds. Just a possibility to consider if you can't get the naltrexone any other way!
thanks for the info above, never heard this before. Are you talking about 2 different drugs above? I was taking 4.5mg of compounded Naltrexone. So sounds like if it's a tablet I could split it in half perhaps? Would you take another antidepressant at bed? I currently take Remeron for sleep, but am getting to the top dosage (60mgs) practically every night now! So might need to find a new sleep med, maybe go back to trazadone, but Remeron was much better for me!

My Dr had me on Cymbalta (low serotonin), but I came off it, didn't feel it was helping my pain much anymore, but that has been months!

My Drs response verbatim, except for his name in regards to getting 50 mg dosage: "Dr said all the studies he know are based on the formulation he uses. He’s not comfortable with this, and doesn’t know how accurate this would be due to fillers." Comfortable is another word for NO! FYI Thought he was open to idea, but it's a no.

GG
 

IrisRV

Well-Known Member
Since being officially diagnosed with CFS in July (2015) at the Mayo Clinic, I now see Katie, one of Dr. Montoya's PA's at Stanford. I've recently started on LDN and will be starting Valtrex in 6 weeks after I'm stable on LDN. I'd love to hear of any positive effects from those treatments if anyone else is following that same protocol!!
I've taken Valtrex and LDN (and Valcyte, and a bunch of other stuff. ;)) I'd be happy to talk with you about it, but we should take it to another thread so we don't take this one off-topic.

If you still want to discuss these treatments with other members, start a new thread with the med names in the title in an appropriate subforum and I'm sure you'll get plenty of responses. This one might be good. Not everyone will find a discussion about Valtrex and LDN buried in the middle of this thread. :)
 

Issie

Well-Known Member
:)

As for the reactive hypoglycemia - I believe it's related to the lack of GI motility that can result from POTS. And also, as the newest criteria for a CFS diagnosis includes orthostatic intolerance - I feel it's safe to say CFS and POTS are either one and the same - or at least go hand in hand.
Sorry will have to disagree with this statement. POTS and CFS are not the same. You may have both. POTS people have fatigue, but not all have CFS. I have HyperPOTS and have fatigue. My sister has OI and CFS. Compare my fatigue to hers and they are far from the same. My sis is in most of the BIG CFS studies. We have genetic issues and autoimmune issues in our family.

I've had white matter and flares on my MRIs too. But never got DXd with MS. Although symptoms have at times been similiar. Even down to not being able to walk and propel myself forward. I do think there is an autoimmune component to the bunch of us. I just don't think it's completely yet discovered. However, there are now studies coming out to indicate autoimmune issues in POTS. I have hypogamaglobulinemia and other autoimmune illness. One thing I found to help for 3 years was Doxycycoline. There is documented studies showing Doxycycoline and Minocycoline being used in autoimmune cases and it helping. I had a mold exposure and severe traumatic stress and the Doxy quit working. Now doing cleanses with diet changes I'm on the upswing again.

I really feel the bottom line is autoimmune and inflammation as the cause. That includes small fiber neuropathy. Which I also have along with FMS.

There may be some genetic factors which predispose us to these things and some factors that may cause an epigenetic change and activate those genes. But what is turned on, may can be turned off. We will pass along these genes. But that doesn't mean they will become active and dominant.

Another biggie being found amongst those with the circle of POTS people I talk to.....many are finding protozoa as a big issue. Lyme and other coinfections are being found much more now.

With all these things I've mentioned, diet plays a big role in recovery. One of the first things a MS patient is told to do is eliminate dairy. Another thing is take Vit D. With my protozoa issues - I was told to go lower fat and become a Vegan. I've implemented many changes in my diet and again I'm making changes. Each time I do, I see overall improvement. I've found grains to be inflammatory. Also all of the nightshade family. And sadly, beans are causing me pains in my joints too. So far, I'm still okay with peas. But, did you know - broccoli has more protein than a serving of steak. Yep, we get protein from vegetables. But vegans need to supplement with B12 - you don't get enough with just veggies.

Okay, so bottom line is POTS and CFS are not the same. Symptoms are considerably different. But you may have both. And POTS people have fatigue but it's not necessarily CFS.

Issie
 

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