With these symptoms, do you have any doctor or treatment ideas for me?

[Tabitha]

Presenting Symptoms (in order of severity):

• Loss of memory and concentration (worse in high school and beyond)
  
  
• Fatigue (worse in high school and beyond)
  
  
• Loss of ability to become sexually aroused (no feeling with direct clitoral stimulation) (worse in high school and beyond), female erectile dysfunction
  
  
• Unrefreshing sleep. And sleep a long time (10+ hours) and then have trouble waking up early if I have to (and will sleep through needing to pee, loud alarms)
  
  
• Decreased sensation in skin all over body (noticed in high school)
  
  
• Headaches
  
  
• Nose inflammation and some congestion (congestion worse in childhood)
  
  
• Allergies (year round since age 4-5 causing mucus production in throat to the point it interfered with sleep and bad nasal congestion...this has mysteriously gone away totally, except for some congestion)
  
  
• Dark circles under eyes
  
  
• Hashimoto’s autoimmune disease (but normal thyroid levels)
  
  
• Shallow breathing
  
  
• Bladder voiding difficulty
  
  
• Heart & circulation (high triglycerides and angina a couple times in the past year)
  
  
• Gluten intolerance or sensitivity, possible Celiac Disease (has celiac gene and some symptoms)
  
  
• Smelly breath, dry mouth (might be due to breathing through mouth too much)
  
  
• GERD
  
  
• Anxiety, chest pain, and over the past year chest pain in the pattern of angina (on rare occasions when stressed)
  
  
• Nobody seems to think much of this, but I think it's relevant...I haven't been sick in over 10 years. I've always thought that may be because my immune system is under or over-activated. Last time was after a short, flu-like illness halfway through eighth grade. Noticed some of the above symptoms starting to occur afterwards.
  

I've been slowly realizing trying to treat this on my own is getting me nowhere. Although I'm planning to continue to take certain supplements, etc...I really need some advice on specific avenues of treatment I can go down. I know I'm very lucky, because my family is able to help me. Between my life-long SCT/ADD and possible CFS, it's very difficult for me to research things and make sense of them. I'm 24 now, and don't believe my type of illness will have a remission or anything like that.


I may have pots. I often get really adreniline-y when I move around. I haven't been tested for this.


I read this book called "It's Not Mental" about a girl with mental illness who found out her illness was biological (which I can relate to, having anxiety) and was interested in seeing the doctor she saw. But I saw he was an endocrinologist who treated with hormones, but to my mind that's not treating the cause. The Whittemore Peterson Institute (where he used to work) then recommended Dr. De Meirleir. I was interested in seeing him, but then read that there was a subset with neurological ME that I think didn't respond as well to treatment? I know he works on the gut, and I still do have dysbiosis and leaky gut, even after having fecal transplants. But on the other hand, I think my illness has a strong neurological component.


Any other ideas of what could help me? I was thinking of trying Freddd's Methylation protocol (am heterogenous on 2 methylation genes). And have just started resistant starch to try and feed the good bacteria in my gut. I also just started taking glutathione, since I react to many supplements with increased anxiety.


Also, for those who may know, how much can dr. de meirleir help autoiumme illnesses? I have genetics that make it likelier than normal I'll get autoimmune disease, and I have 3 people in my family tree who had/have progressive MS. Due to the decreased sensation all over my body...and in other, ahem, parts...I suspect it may be the case that this is autoimmune. But, I'm really open to any doctor, as long as there seems to be a good chance they can help. I will probably e-mail my profile to De Meirleir's secretary, and hope she might forward it to him. Will most doctors accept e-mails?


I figured this would be the place to ask for help. My current doctor doesn’t seem to think much of my symptoms (they did just test me for CMV and EBV which were negative), and now I’m annoyed to go again because they’ll just write everything off since nothing on normal tests is wrong. Do the specialist doctors usually give you a report to give to your GP... like special considerations they should have for you?


Also, any other ideas for me that I can do on my own? I was thinking of trying to sleep in my backyard in a tent for a while (don’t know how long til I’d know) to see if it would help.

 

[panckage]

Hi @Tabitha your symptoms seem pretty normal for CFS. The problem is that any treatments that work only seem to work for some people and then often lose their effectiveness over time anyways

LDN is a common place to start. It helped me with brain fog although in not sure how effective it is anymore. I find small amounts of marijuana helpful to reduce brain fog for an hour or 2. When my brain breaks it helps me to do stuff (read, listen to music) as opposed to just lying on the couch incapacitated

Ritalin helps me as well both cognitively and physically although is kind of a double edged sword. Many posts about that here! If you are interested in trying a stimulant and your doctor won't prescribe one, there is adrafinil, which from my understanding is basically modafinil but it's not controlled so you can get it without prescription


Curious what do the "worse in high school and beyond" comments mean? Symptoms have improved since then

 

[Rvanson]

Presenting Symptoms (in order of severity):

• Loss of memory and concentration (worse in high school and beyond)
  
  
• Fatigue (worse in high school and beyond)
  
  
• Loss of ability to become sexually aroused (no feeling with direct clitoral stimulation) (worse in high school and beyond), female erectile dysfunction
  
  
• Unrefreshing sleep. And sleep a long time (10+ hours) and then have trouble waking up early if I have to (and will sleep through needing to pee, loud alarms)
  
  
• Decreased sensation in skin all over body (noticed in high school)
  
  
• Headaches
  
  
• Nose inflammation and some congestion (congestion worse in childhood)
  
  
• Allergies (year round since age 4-5 causing mucus production in throat to the point it interfered with sleep and bad nasal congestion...this has mysteriously gone away totally, except for some congestion)
  
  
• Dark circles under eyes
  
  
• Hashimoto’s autoimmune disease (but normal thyroid levels)
  
  
• Shallow breathing
  
  
• Bladder voiding difficulty
  
  
• Heart & circulation (high triglycerides and angina a couple times in the past year)
  
  
• Gluten intolerance or sensitivity, possible Celiac Disease (has celiac gene and some symptoms)
  
  
• Smelly breath, dry mouth (might be due to breathing through mouth too much)
  
  
• GERD
  
  
• Anxiety, chest pain, and over the past year chest pain in the pattern of angina (on rare occasions when stressed)
  
  
• Nobody seems to think much of this, but I think it's relevant...I haven't been sick in over 10 years. I've always thought that may be because my immune system is under or over-activated. Last time was after a short, flu-like illness halfway through eighth grade. Noticed some of the above symptoms starting to occur afterwards.

I've been slowly realizing trying to treat this on my own is getting me nowhere. Although I'm planning to continue to take certain supplements, etc...I really need some advice on specific avenues of treatment I can go down. I know I'm very lucky, because my family is able to help me. Between my life-long SCT/ADD and possible CFS, it's very difficult for me to research things and make sense of them. I'm 24 now, and don't believe my type of illness will have a remission or anything like that.


I may have pots. I often get really adreniline-y when I move around. I haven't been tested for this.


I read this book called "It's Not Mental" about a girl with mental illness who found out her illness was biological (which I can relate to, having anxiety) and was interested in seeing the doctor she saw. But I saw he was an endocrinologist who treated with hormones, but to my mind that's not treating the cause. The Whittemore Peterson Institute (where he used to work) then recommended Dr. De Meirleir. I was interested in seeing him, but then read that there was a subset with neurological ME that I think didn't respond as well to treatment? I know he works on the gut, and I still do have dysbiosis and leaky gut, even after having fecal transplants. But on the other hand, I think my illness has a strong neurological component.


Any other ideas of what could help me? I was thinking of trying Freddd's Methylation protocol (am heterogenous on 2 methylation genes). And have just started resistant starch to try and feed the good bacteria in my gut. I also just started taking glutathione, since I react to many supplements with increased anxiety.


Also, for those who may know, how much can dr. de meirleir help autoiumme illnesses? I have genetics that make it likelier than normal I'll get autoimmune disease, and I have 3 people in my family tree who had/have progressive MS. Due to the decreased sensation all over my body...and in other, ahem, parts...I suspect it may be the case that this is autoimmune. But, I'm really open to any doctor, as long as there seems to be a good chance they can help. I will probably e-mail my profile to De Meirleir's secretary, and hope she might forward it to him. Will most doctors accept e-mails?


I figured this would be the place to ask for help. My current doctor doesn’t seem to think much of my symptoms (they did just test me for CMV and EBV which were negative), and now I’m annoyed to go again because they’ll just write everything off since nothing on normal tests is wrong. Do the specialist doctors usually give you a report to give to your GP... like special considerations they should have for you?


Also, any other ideas for me that I can do on my own? I was thinking of trying to sleep in my backyard in a tent for a while (don’t know how long til I’d know) to see if it would help.

I wish I could help you but most adults test positive for CMV and EBV. Most all sufferers of CFS/ME have both, but so do the so-called "normals" who dont have CFS/ME. That's what makes it so hard to have a blood test for CFS/ME, since we dont know why some us develop the Dx, while most people do not.

Hell, with no CytoMegaloVirus you could donate blood to infants. CMV in infants can cause deafness and other issues, so most blood donor's blood cannot be used to save a children's life, without risking hearing loss.

 

[Hip]

Hi Tabitha

For your anxiety symptoms, if this is generalized anxiety disorder, the supplements detailed on this thread may help:

Completely eliminated my severe anxiety symptoms with three supplements!


I developed a chronic nose inflammation and nasal congestion after catching the suspected enterovirus detailed on my website here in 2003. This virus also caused me to get a decreased sensation in skin all over body. Someone who caught this virus from me suddenly developed gluten intolerance (though paradoxically, I had gluten intolerance prior to the virus, but lost this intolerance after I caught my virus and developed ME/CFS). I also developed a chronically dry mouth after contracting the virus.

The virus also triggered severe generalized anxiety disorder in me and in several others who caught the virus from me. Fortunately I eventually was able to eliminate the anxiety by the supplements detailed on the above thread.

I am wondering whether your chest pain might be pleurodynia or pleurisy, which can be both caused by enterovirus infection.

One treatment that worked well for my virally-induced ME/CFS is high dose selenium.

You might find the ME/CFS treatments detailed in this document of interest.

Very rarely catching colds is common among ME/CFS patients, possibly because the immune system is on overdrive. More info in this post.

 

[Tabitha]

Hi Tabitha

For your anxiety symptoms, if this is generalized anxiety disorder, the supplements detailed on this thread may help:

Completely eliminated my severe anxiety symptoms with three supplements!


I developed a chronic nose inflammation and nasal congestion after catching the suspected enterovirus detailed on my website here in 2003. This virus also caused me to get a decreased sensation in skin all over body. Someone who caught this virus from me suddenly developed gluten intolerance (though paradoxically, I had gluten intolerance prior to the virus, but lost this intolerance after I caught my virus and developed ME/CFS). I also developed a chronically dry mouth after contracting the virus.

The virus also triggered severe generalized anxiety disorder in me and in several others who caught the virus from me. Fortunately I eventually was able to eliminate the anxiety by the supplements detailed on the above thread.

I am wondering whether your chest pain might be pleurodynia or pleurisy, which can be both caused by enterovirus infection.

One treatment that worked well for my virally-induced ME/CFS is high dose selenium.

You might find the ME/CFS treatments detailed in this document of interest.

Very rarely catching colds is common among ME/CFS patients, possibly because the immune system is on overdrive. More info in this post.

@panckage, "worse in high school and beyond" means got a little or somewhat worse halfway through highschool and into my early 20s.

Thanks Hip! I have tried the anxiety supplements you speak of and they do help a little, more than other things I've tried, as long as I take them early enough in the day. I think I have generalized anxiety but worse, so I'm going to try some mindfulness/yoga...maybe that amygdala retraining I've heard of before.

I'm relieved to know it's normal for me/cfs patients to not get colds, it just makes me a little nervous sometimes when it crosses my mind. 2 years ago I started getting cold sores from contracting oral herpes, and then I haven't had it again for 1.5 years. It makes me wonder if my body is just not fighting off these infections and then they're allowed to wreak havoc. What do you think?

That's interesting about the chest pain...I recently saw that one CFS doctor focuses on viral infection of the heart. I also have trouble taking deep breaths as it can hurt, so I think I'm going to try and bring this all up to my doctor and hopefully they will take me seriously. Otherwise I will have to find a new one.

Any tips anybody, about how to get your current GP to take you seriously?

 

[Daffodil]

@Tabitha ..sounds exactly like good ol' CFS to me

DeMeirlier uses antibiotics and I believe his treatment is currently the best (I've seen several specialists).

"CFS is sort of like an atypical MS", I was told my one prominent researcher.

Certainly, the idea that intracellular bacteria causes autoimmune disease is not new. You can look up the research of Garth Nicolson, David Wheldon, Drs. Stratton and Mitchell (@Vanderbilt), and well....even Trevor Marshall.

You don't get colds cuz your immune system is over-activated. Cytokines are high (which is bad) and I think they prevent viruses from taking hold inside cells....if I recall correctly.

You have GERD and GI issues cuz the bacterial flora is messed up. This might be at the core of the illness.

I would find a GP who at least believes its a real illness - even if he/she doesn't know anything about it. The GP must be willing to help you follow the protocol of the specialist.

If the GP doesn't think its a real illness, I am not sure I would waste my energy trying to convince them. You could get some immune system testing but they might not take that seriously, either. You could show them that the WHO says its a real disease........make them watch videos..read articles....but from my experience, I think its better to just find an open minded doctor, if possible.

I would not bother sending emails to DeMeirleir's office if you haven't seen him yet. He is extremely busy and has hundreds of patients.

If you want to, you can get some of the common tests he does before you go to him and that way, you might get a head start on treatment.
xo

 

[Hip]

Thanks Hip! I have tried the anxiety supplements you speak of and they do help a little, more than other things I've tried, as long as I take them early enough in the day. I think I have generalized anxiety but worse, so I'm going to try some mindfulness/yoga...maybe that amygdala retraining I've heard of before.

When my virally-triggered anxiety was severe, I had to take 6 or 8 of my anti-anxiety supplements together to get my anxiety under control. The supplements work, but their individual effects are not that strong, so you have to combine several supplements as a stack to get a strong overall anti-anxiety effect.

Though some of the supplements are stronger than others, and N-acetyl-glucosamine was definitely one of the strongest.

 

[panckage]

Loss of ability to become sexually aroused (no feeling with direct clitoral stimulation) (worse in high school and beyond), female erectile dysfunction

I'm sure you're aware of flibanserin although maybe it isn't what you are looking for.

There are also PDE5 inhibitors such as Viagra. While these were not shown to very efficacious in women, they still have the same physiological effect in women as they do in men - that is it still increases blood flow to genitals and will help a clitoris to become and stay erect. So this maybe something to look into. Maybe ask your dad

 

[Tabitha]

When my virally-triggered anxiety was severe, I had to take 6 or 8 of my anti-anxiety supplements together to get my anxiety under control. The supplements work, but their individual effects are not that strong, so you have to combine several supplements as a stack to get a strong overall anti-anxiety effect.

Though some of the supplements are stronger than others, and N-acetyl-glucosamine was definitely one of the strongest.

Thanks. I really need to get my anxiety under control, and therapy doesn't help. It's been really bad for ten years now. It doesn't help with people taking me seriously, either, because the anxiety is noticeable. I looked through your post and there were a lot listed there, if you could recommend 6 for me, which would you recommend. Sorry to be so lazy. I've been taking NAG and turmeric, but will up to 3 X per day.

 

[Hip]

I looked through your post and there were a lot listed there, if you could recommend 6 for me, which would you recommend.

If you want a quick suggestion: NAG, turmeric, flaxseed oil, vitamin A, vinpocetine, cetirizine, Saccharomyces boulardii, probiotics, prebiotics such as inulin.

 

[Daffodil]

anxiety could be caused by CNS inflammation, I think. I knew a fellow who developed OCD after developing CFS...

maybe its the whole kynurenic acid/tryptophan/serotonin thing?

 

[Hip]

anxiety could be caused by CNS inflammation, I think.

I agree. Brain inflammation is my theory of what causes anxiety in ME/CFS patients. There is a brief overview of my brain inflammation theory of anxiety in this post.

A lot of the supplements that I found have anxiolytic effects turned out to be anti-inflammatories of one sort or another.

 

[TigerLilea]

Also, for those who may know, how much can dr. de meirleir help autoiumme illnesses? I have genetics that make it likelier than normal I'll get autoimmune disease, and I have 3 people in my family tree who had/have progressive MS. Due to the decreased sensation all over my body...and in other, ahem, parts...I suspect it may be the case that this is autoimmune. But, I'm really open to any doctor, as long as there seems to be a good chance they can help. I will probably e-mail my profile to De Meirleir's secretary, and hope she might forward it to him. Will most doctors accept e-mails?

As you have a family history of Progressive MS, have you considered trying Dr. Terry Wahls Protocol for MS? It works not just for MS but for other autoimmune disorders. If you Google her you will find several videos she has done outlining her protocol. She also has a FB page.

http://terrywahls.com/

 

[Daffodil]

I agree. Brain inflammation is my theory of what causes anxiety in ME/CFS patients. There is a brief overview of my brain inflammation theory of anxiety in this post.

A lot of the supplements that I found have anxiolytic effects turned out to be anti-inflammatories of one sort or another.

totally. its all inflammation: autism, OCD, other mental illness maybe too. probably related to some gut infection issue no one knows about yet...

 

[Hip]

totally. its all inflammation: autism, OCD, other mental illness maybe too. probably related to some gut infection issue no one knows about yet...

Reducing gut inflammation by means of prebiotics, probiotics and Saccharomyces boulardii was one of the first treatments I found to reduce my anxiety levels. When there is inflammation in the gut, the vagus nerve detects this, and signals to brain, and the brain then responds by ramping up brain inflammation levels. So in this way, gut inflammation triggers brain inflammation.

I think this is the likely reason why people with IBS (which I have) often experience anxiety and sometimes depression symptoms: because the gut inflammation triggers brain inflammation, and that then causes these neuropsychological symptoms.

So my anti-anxiety strategy starts by reducing gut inflammation, but also involves anti-inflammatory supplements like NAG and turmeric that I think directly reduce brain inflammation.

 

[Groggy Doggy]

@Hip

I still amazes me how so many of us share a core common set of symptoms, but respond so differently to treatments.

GD

 

[Tabitha]

@TigerLilea I have heard of that diet, and a long time ago considered doing it briefly but shied away because it was so different to how I was used to eating. But I've been re-considering my diet which although it's paleo I don't execute it well or eat enough veggies, so maybe Wahls is the diet to try. Thanks for the reminder!

@Daffodil Yes I think it must be inflammation. All of the drugs for anxiety just make it worse.

@Hip I did some reading about N-acetyl-glucosamine, and it also may help partly by reducing gut inflammation. It binds to lectins, and lectins are a big contributor to leaky gut, and it also is a precursor to something that degrades oxalates (which are contributors to interstitial cystitis, vulvodynia, and it's not proven but maybe chronic fatigue among other things).

 

[Hip]

@Hip I did some reading about N-acetyl-glucosamine, and it also may help partly by reducing gut inflammation. It binds to lectins, and lectins are a big contributor to leaky gut,

Yes, that's actually how I discovered the benefits of NAG: I started taking it as part of a regimen of supplements that help leaky gut, and it was then I noticed its anti-anxiety effects. I believe NAG binds to the lectin wheat germ agglutinin.

Though if you want to absorb NAG, then you are best taking it on an empty stomach; because if you take with food, it can bind to and deactivate lectins, but then it does not get absorbed. I take my NAG on an empty stomach.

 

[Tabitha]

@Hip Is NAG at all like NAC when it comes to blocking methylation? I've been tinkering with methylation for a while (but I am stopping for now and putting other things in place first), but just wanted to know if you knew about this.

Also, how many enteroviruses do they know about? Do you have any links I could read on this, or bring to my doctor? It's probably a dead end with my doctor, but I'm curious to know about. it. I thought of getting the testing you did that you sent to europe. Where is that located, again?

Thanks

 

[Tabitha]

@panckage Where do you get your ldn? I've considered ordering it from online, as I've heard there are safe sources, and I'm currently inbetween doctors. I convinced my old psychiatrist to prescribe it for me, but he just gave me naltrexone with no instructions at all- left me to figure it out by myself. He was so reluctant about it that it discouraged me and I stopped it after a couple weeks cause i didn't notice a dramatic effect.

Edit: I probably won't try it again though. I'm still trying to figure out what to do next. Just curious how you got it.