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Feeling overwhelmed -- please help!

Discussion in 'General Treatment' started by cbmtl, Nov 14, 2014.

  1. cbmtl


    New Jersey
    I'll preface the following by first apologizing for the novel below. I didn't start out with the intention to write one, but in the process, felt that a very thorough overview would helps those in the know to provide helpful suggestions.

    I wish that I could simply glide through my days, without my body and brain ceaselessly reminding me of how crappy I feel. Maybe someday again...soon?

    CATHARTIC VENT: While I have not been officially diagnosed with CFS, I have pretty much the entire lot of symptoms. I guess a differential diagnosis is possible, but I have already followed the treatment protocols for, to date: celiac disease, hashimotos and lyme...without benefit.

    It's all so surreal, but in retrospect maybe unavoidable. While I didn't have much in the way of physical symptoms, i have been a life-long sufferer of anxiety, minor GI distress and moderate to mild memory challenges. Now, I believe that they are all inter-related. Over the past 5-years, I have had countless tests and mounting procedures, including recent sinus surgery, all in an attempt to break the ever maddening fatigue and brain fog.

    Up until my mid-30s I was able to cope, well enough I guess, to have gone to college, graduate school and achieve sufficient vocational success. But then, in a short period of time, I left an increasingly stressful position, began my own company and had a child. During that time, I also began a gluten-free diet - in response to a celiac diagnosis. I also started taking adderall, because I literally could no longer focus. Any attempt to focus, particularly on things that didn't interest me, would cause massive anxiety. It was as if a fuse blew and my brain/body could simply no longer function. Sadly, on the outside, other than my eyes, I look perfectly fine.

    I feel added pressure as a 42 yo married male with a young child. I have had to take a BIG step back from my former life and am concerned that I will never again experience normalcy. I try to keep my head up...and lexapro has definitely helped, but the symptoms are simply crushing and without a respite. They infect every experience that I now have. I feel particularly sad for my son, who never got to experience his former father. Sad.

    SYMPTOMS: Whatever this disease or diseases is, it's thorough! I don't believe that a single body system has been left unaffected. Unfortunately, no doctor has been able to establish a protocol yet that gets me to a place where I can start to more actively participate in my recovery. That's critical imo. In the past 5 years, since the cataclysmal onset, I can't recall one time where my body has clearly said -- thata boy! You're heading in the right direction and here's why.

    Exhaustion: 24 hours a day, 7-days a week. It also often comes with the bonus of feeling wired at the same time. All extremely devastating. It does lighten a bit at night, which is likely due to my inverted cortisol levels. To-date, i haven't figured out a way to break the cycle. It seems as if no matter how much i sleep, when i sleep or where i sleep, the result is the same. At this point, simply being awake is taxing my body. And, while my whole body feels exhausted, almost at a cellular level, i'd venture to say that my brain is even more exhausted.

    Brain Fog: I literally feel like a vegetable. Everything has slowed down considerably. Brain processing, talking, walking, all forms of movement, etc. It's like I can barely muster the physical and cognitive energy to start/finish the most basic tasks. While no savant, I always considered myself intelligent enough. However, in retrospect, I believe that I have always suffered from sluggish cognition. It was as if my brain only operated at a specific (narrow) speed. Too little or too much stimulation would cause massive anxiety. I had a QEEG performed and the consulting psychologist described my brain as not having an accelerator. He couldn't say why though.

    Stomach Ache: While the GI distress I felt as a child and young adult was occasionally a PITA, it was mostly a dull global pain, that, unless touched or discussed, i wasn't even aware of. However, once i began a gluten-free diet, my body fell off a cliff. I am now always aware of the stomach aches, which range along a more narrow pain continuum. Bowel irregularities have followed.

    Headaches: I never suffered headaches until 7-years ago, when I had wisdom teeth surgery. They haven't left since. Guess they didn't receive the not-welcome memo. Like my stomach aches, they are always painful and move within that continuum. They also sometimes pair with radiating heat around my head. I find that pressure does help.

    Stimuli: Increasingly poor response to light and noise. I adapt, but it's not immediate. I had to buy industrial earmuffs, as unexpected sounds were increasingly shocking to my system. Clearly, my nerves are fried.

    Memory/Cognition: Simply poor imo. In light of the other symptoms though, this is the least of my worries. I suspect that if I can identify the root cause(s) and treat them properly, my brain function will improve.

    Tremors: I have increasing hand and finger tremors. I went to a parkinson's specialist and she discounted the disease. I may see another specialist though, just to make sure.

    TMJ: I often find that my jaw is clenched. Clearly, my body is reeling and this may be one of the ways that it is coping.

    Balance, Gait and Fine Motor Skills: Worsening. At times, it feels like my right leg is a bit slow. It's very slight and not something that anyone (i suspect) would notice, but I do. It feels like my circuitry is just plain off.

    Pain: I have vacillating pain, which is often global, though most pronounce in the gut and brain. I also often feel very hot, particularly in the same regions mentioned above.

    Circulation: My circulation appears to be worsening. When I lie down to sleep, I can literally feel the lower part of legs go numb.

    Hands: For some reason, they have progressively clawed. That's now their natural position. If not conscious, they'll form a fist.

    Anxiety and Depression: Over the past 5-years I have, at times, experienced cycles of anxiety and depression that were unlike anything that I had ever experienced and quite scary. I am now on lexapro, which, has cycled from extremely effective to not so much. I have to figure out what is causing the inconsistency.

    I'm sure there are others, but those are the biggies.

    MY DAY: My mornings begin in shock. I often wake-up between 6AM to 7AM to tend to my son and my first, very desperate thought is, when can I go back to bed? My symptoms often are: disorientation, headache, stomach ache, sore throat, sore jaw, phlegm build-up, always needing to go to the bathroom, etc.

    DIAGNOSIS TO-DATE: So far, I have been officially diagnosed with:

    celiac disease
    lyme, which may be a bit controversial. I had many negative ELISA and Western Blot tests, before a single positive IgM test from Igenex. Even the IgG test from Igenex was negative. Not sure what to make of it all.
    Epstein Barr: The titers came back extremely elevated.

    I have increasingly heard from doctors, CFS/CFIDS and fibromyalgia.


    Endoscopy: Positive for classic case of celiac disease, which to-date, has responded poorly to the gluten-free diet.

    MRI (with and without contrast) of the Brain and Spine: The results were, in the words of the doctors, unremarkable. Yay, i guess, but am still without answers. There were no apparent changes in grey and white matter. A 7cm arachnoid cyst was detected, but no one has said that should be a concern.

    SPECT Scan: Found pronounce decreased blood flow to the right temporal frontal and temporal regions. Possible vasculitis, due to lyme-related encephalopathy. I went to a vascular neurosurgeon, who said that he couldn't detect the vasculitis demonstrated in the SPECT Scan. He recommended that I go to Hopkins for an possible autoimmune consult. They too dismissed vasculitis. Currently, I don't know what to make of those findings or who to see.

    Thyroid: While my TSH #s progressively ventured to the low 8s and antibodies were present for hashimotos, there has been no mention or discovery of nodules. I have tried pretty much every medication in this category and, sadly, most have made my symptoms much worse. My body basically rejects common therapeutic responses. I'm currently on 50mcg of Levo. I may try to increase the dosage and / or add cytomel. Thoughts?

    Allergen-Panel: Not too bad. Many minor allergic responses, but few majors. I have tried to remove those foods that I respond to. Unfortunately, my body has a poor response to most everything, so hasn't been much - or maybe i'm not paying attention well enough - to make true progress.

    Pretty much every GI study: No finding to explain why my stomach is in near constant pain.

    IGG: Some irregularities (Subclass 3), but nothing my doctors have mentioned as concerning.

    Neurotransmitters: I believe except for dopamine (barely), they were all well below the normal range. I also had highly elevated glutamate.

    Labs: Some of the ones that consistently stick out are: low vit-d (without intervention), elevated b12 (without a supplement), low testosterone, elevated glucose serum, elevated cholesterol, highly elevated EBV titers, and slight irregularities with a glucose tolerance test.

    GENETICS: Evidently, poor. I have all of the biggie mutations: MTHFR, VDR, COMT, MAO-A, etc. I still am not sure where to begin and how best to manage the mutations.


    I have tried many natural therapies, including nearly a year of acupuncture, a couple of months with a chiropractor, massages, meditation, sauna, moderate exercise, cognitive behavioral therapy, dietary changes, etc. Not a dent, which leaves me to believe that the symptoms / diseases are deeply rooted and, if there's to be any hope, require serious intervention.

    I have tried most, if not all, of the supplements listed on this forum. I have actually greatly paired down my current supplement regimen, with the exception of some amino acids, enzymes and probiotics.

    CLOSING: I am somewhat at a loss for what to do next. I tuned out for the past 6 months, as it all just got too overwhelming. I was consumed with getting better...fearing that if I didn't start to improve soon, I might no longer be able to help myself. While my support system is reasonably stable (for now) my wife is still having a very difficult time understanding and responding to my current situation. Can't really blame her. Neither I, nor my current doctors, know what to do either. Although, I do plan to make an appointment with Dr. Podell - hopefully he'll have some insights and recommend possible therapeutic alternative. Bottom-line, I NEED to get restorative sleep and relief from the brain fog. I can't see a way out of the darkness without success in those two critical areas.

    If you've made it to the end -- I applaud your persistence and wish you well on your wellness journey.

    Last edited: Nov 18, 2014
    Countrygirl and August59 like this.
  2. 5150

    5150 Senior Member

    hello, in reading your "novel" (good job), I'm struck by how similar we are in symptoms. That could be myself writing.
    I am wishing you the best. I think you are doing the right things, mostly the tests.

    re sleep: there's a thread devoted to that topic on here. What it's come down to for me, is Ambien.
    Those who can find a couple of things to alternate in when the Ambien isn't as effective, tend to get better sleep so it seems. re brain fog:that seems to be a highly personal area for a degree of success or not. Some improve, some don't, seems to be the way it goes. Eat Real Food... no processed stuff,microwave boxes, stop sugar, no alcohol, stop inflammation! ibuprofen in moderation, and only 400mg/day. or possible kidney problems. Drink water and take in electrolites( I use pedialite). Also, re the stomach pain: ibuprofen is a band-aid, but better than nothing... Assuming doctors are also inhumanely not providing you with any level of pain relief(as is my case). We are punished along with the criminals who abuse painkillers, so good luck with that effort. Try to research and try to obtain a prescription for a better painkiller and anti-inflammatory.

    I am so sorry to hear about your situation. There are many good people on here who will try to help as much as possible. It's a really tough spot you're in, that All of Us are in.
    August59 likes this.
  3. Gingergrrl

    Gingergrrl Senior Member

    @cbmtl I am so sorry for everything you are going through and wanted to welcome you to PR. I read your whole post and have a few questions.

    You said you have very high EBV titers and I was wondering if you recently had mono or a viral infection?

    You also mentioned Hashimotos but I wasn't sure if you had an official diagnosis from an Endo? Have you tried Armour Thyroid?

    I was also wondering what autonomic symptoms (if any?) you have? Do you have trouble with tachycardia or regulating your BP or has this stuff remained normal?

    Also curious if you have PEM after activity? Hope you don't mind all the questions but it will help us give you better feedback. Also if you are comfortable saying what area you live, people might be able to give doctor referrals.

    Best wishes to you and welcome!
  4. halcyon

    halcyon Senior Member

    Sorry to hear about your troubles. Sadly I can relate with a lot of it.

    It sounds like you've mostly addressed the other conditions that can mimic ME/CFS symptoms. It may be time to rule out possible chronic pathogenic causes. My advice is to work your way through the roadmap for testing and treatment.

    A couple questions:

    You mentioned feeling hot, do you ever have fevers, even low grade?
    What exactly were the IgG irregularities that you had?
    Have you had your prolactin level measured?

    The persistent GI symptoms along with everything else would make me suspicious of a chronic enterovirus infection. The good news is that if you had that endoscopy recently the pathologist might still have some tissue biopsy samples stored which can easily be tested for the presence of enterovirus. You can read more details about that on the page I linked above.
  5. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
    @cbmtl Sorry to hear of your illness and frustrating medical experiences. Celiac + Hashimoto's = autoimmune issues. There are a lot of foods beyond gluten that impact. I'm adding links below. Re levothyroxine, you might well be better off w/ T3 alone, Cytomel. Some links below. Also worth investigating Low dose naltrexone (LDN), which is a huge benefit for many autoimmune diseases.

    Your many neurological symptoms and genetics suggest a strong possibility you're suffering from B12 deficiency. My many neurological symptoms disappeared once I'd implemented B12/folate. In my signature you'll find a Dummies Guide to methylation by @Athene. It might be a good way to start understanding this complex and critical topic. Also @caledonia has a range of methylation resources in her signature to give you the basic info. I'm linking a vid re the range of symptoms possible from B12 deficiency alone. Best wishes as you dig deeper into the causes of your illness. BTW, as you may have already found, it's very difficult to get the help we need from MDs. If yours is knowledgeable and helpful, you're very fortunate. I've given up on most testing, have been successfully treating by symptoms since I came to pr. Lot's of links, take your time.;)

    Diagnosing and Treating Vitamin B12 Deficiency‬




    https://www.youtube.com/user/TheRLCLabs Several Hypothyroid vids, incl Dragone

    5 Lies About Your Thyroid Disease That You’re Likely to Hear


    Rudy Dragone, “Wilson’s T3 Thyroid Syndrome”



    Caledonia: SNP Guide + conversation http://forums.phoenixrising.me/index.php?threads/snps-interpretation-guide.32187/

    Start Low and Go Slow pdf link

    Caledonia: Methylation Made Easy

  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Dear cbmti,
    One of the things that worries me is that there are lots of doctors around who are ready to sell whatever diagnosis people are wanting to buy. It sounds as if your thyroid status is normal - so no Hashimoto's, at least on evidence so far. Do you know what the coeliac diagnosis was based on - did you have a histological confirmation of villous atrophy reversed after gluten free, or anti TTG antibodies? High EBV titres are an indication of good immunity to EBV, not of a problem with EBV. Dysautonomia may be a reasonable description of your symptoms but as such it is not a specific diagnosis - unless there is nerve conduction study evidence or something like that. I suspect you are right to wonder about the Lyme if the tests are mostly negative.

    Tests are useful in the ME/CFS context to exclude important other diagnoses but as far as I can see the management of people, who by exclusion of other things using tests, are diagnosed with ME/CFS has nothing much to do with tests like this. It consists of recognising that there is a fairly common condition of this sort that deserves attentive supportive care, including management of any comorbidities.

    It is a rule on PR that we do not give people advice but I think suggestions for seeing specialists is OK. I would suggest that you should find a specialist who is comfortable with the concept of ME/CFS and has a lot of experience with helping people with such problems and who does not want to sell multiple diagnoses based on doubtful tests. That may be easier said than done but there are such people in the UK, at least in some places.
  7. caledonia


    Cincinnati, OH, USA
    Hi cbmtl, mainly just popping in so you can see my signature links. A lot of what you're describing does sound like it's in the realm of a methylation based illness, in which case everything is likely interrelated, and methylation treatment should be at least somewhat helpful.

    Wisdom teeth surgery was a trigger for me too, and I've since found out that people with MTHFR don't tolerate common anesthetics. You've had two surgeries...

    Serendipitously, I just received this info regarding the failure of gluten free diets and how to debug that. Maybe it will be helpful. http://www.glutenfreesociety.org/gl...8967412f61e7794408eb572125eb8876398b121033c61

    If you have high glutamate, that can cause both anxiety and sleep problems. The reversed sleep cycle suggests adrenal fatigue. Low neurotransmitters would also affect sleep. Thyroid issues suggest toxic metals such as mercury and also folate deficiency, and gluten issues are also linked. Celiac suggests B12 deficiency and other vitamin and mineral deficiencies. That, along with your SNPs suggest mental health issues. The high EBV suggests immune system issues, which means gut issues. Gut issues also suggest neurotransmitter issues.

    You can see how it's all interrelated.

    In addition a quick google search shows that Lexapro depletes -Folic acid, Vitamins B6, B12, D, Essential Fatty Acids, Sodium. This would of course add to your problems.

    I had autoimmune thyroiditis for 13 years and was on Armour thyroid. With methylation treatment it is now healed. My adrenals are also improving based on signs and symptoms (haven't officially retested that yet). Although I'm nowhere back to being normal (yet), many other positive things have happened, too numerous to mention. I really feel like I'm on the right track.

    It sounds like you're still working with allopathic doctors and haven't gotten into holistic, naturopathic or functional medicine yet. Allopathic doctors aren't going to be much help for what we have. My suggestion would be to find a functional medicine or methylation practitioner.

    Check out the links in my signature, especially the first four which outline a "Yasko lite" type of methylation treatment. This is what I'm following. I also have a link for methylation practitioners and many other useful links.
    Anju and Gondwanaland like this.
  8. cbmtl


    New Jersey
    Thanks all for your kind words, suggestions and thoughtful question. I'll do my best to answer them.

    @S150: Since we share many of the same symptoms, i'm hopeful to hear that you have improved.

    Many great suggestions. I have had numerous sleep studies and seen a few sleep specialists, with little progress. My initial label was poor sleep hygiene, which means nothing, Eventually, I was indicated for minor sleep apnea (hypopnea index of 7) and prescribed a CPAP machine. Unfortunately, like many of the other therapies I have tried, the CPAP hasn't made a difference. I tried it for approximately 2-months. Is it possible that this is not long enough?

    With respect the actual act of sleeping, I am able to do it -- though it may occasionally take some time to actually fall asleep. I do occasionally wake up to go to the bathroom. I also am increasingly experiencing weird involuntary limb movements...which most definitely may be affecting my sleep quality. Any suggestions on how to stop these movements?

    Yes, I will look into pain killers -- admittedly have not done that, but refuse to suffer more than I have to. Also, re: inflammation, my sed rate, c-reactive protein levels and ANA are all negative. Are there other labs that I should be requesting to address potential inflammation.

    I can stand to clean-up my diet a bit. Admittedly, because of my home and work responsibilities and child, as well as no energy whatsoever, I do use the microwave more than I should. However, I mostly eat organic, low-sugar, lots of fruit, vegetables and water. I'll have to look into electrolyte replenishment.
  9. cbmtl


    New Jersey
    @Ginger: Thank you.

    I don't know if I recently had mono or a viral infection. Given my fatigue, etc., I asked my primary care to test me for epstein barr. The titers, as mentioned, all came back extremely elevated. If I recall correctly, My PCP said that those values however do not indicate whether the virus is active...and even if it was, rest was/is the best medicine. Is this not the case?

    I do have an official diagnosis of Hashimotos - based on antibody values. I have tried pretty much all of the thyroid meds, including Armour. Sadly, they all made me much sicker. I wasn't able to go above 30mg of Armour and even at that value, was having a really difficult time. I have read parts of STTM and am going to explore different T3/T4 ratios. Also, my testosterone is very low and I recall reading that hormone levels can affect one's ability to improve on thyroid meds.

    The dysautonomia stuff was based on paperwork from an integrative medicine doctor that I saw. It was never really fully fleshed out. I do have some heart pain and am currently in the early stages of seeing a cardiologist. He did mention some possible abnormalities, but first wanted me to have a series of tests, which I have had. I haven't had the follow-up yet, but understand that my stress test was normal.

    As for PEM, it's hard to determine if I have it. I just feel exhausted all of the time, so it's hard to pick-up minor signal differences that my body is giving me. I definitely have reduced my activity level though. There was a period a few months back where I was trying to get to the gym regularly, but that activity would often be flanked by naps.

    Be well.
    Gingergrrl likes this.
  10. cbmtl


    New Jersey
    @ Halcyon: Thank you.

    I'll review the roadmap you provided - thanks!

    Interesting questions:

    You mentioned feeling hot, do you ever have fevers, even low grade? Actually, my body temperature is always low -- like, 97 degrees.

    What exactly were the IgG irregularities that you had? My IgG subclasses were tested, and subclass 3 came back low. My PCP said an individual subclass irregularity wouldn't explain my diffuse symptoms.

    Have you had your prolactin level measured? I went back through my labs -- there are many -- and on 08/13, I had labs. My prolactin levels were solidly normal - 12 (range 2 - 18)

    The persistent GI symptoms along with everything else would make me suspicious of a chronic enterovirus infection. The good news is that if you had that endoscopy recently the pathologist might still have some tissue biopsy samples stored which can easily be tested for the presence of enterovirus. You can read more details about that on the page I linked above.

    Is this at all related to the parvovirus, which I tested negative for. My last endoscopy was in 2012 I believe. Is an endoscopy the only way to confirm the enterovirus, and if so, I assume we're talking antivirals?

    Thanks again!!
  11. cbmtl


    New Jersey
    I'll respond to the other responses tomorrow. Thanks all again!
  12. halcyon

    halcyon Senior Member

    I had basically the same experience. I think, after a short adjustment period, if you're not seeing any benefits you probably never will. For me the damn mask woke me up more than any hypopneas probably ever did.

    What was your actual value on the ESR test? The lab ranges usually list 0 as normal on the low end however a low ESR can actually be considered abnormal as well.
  13. halcyon

    halcyon Senior Member

    Low subclass 1 and 3 are extremely common with ME patients it seems. Unfortunately I'm not sure what the significance is.

    OK, not too bad. The reason I asked is because elevated prolactin can be a cause of low testosterone.

    No but parvovirus is definitely suspected in ME/CFS so it's good you ruled that out. There are other ways to test for enterovirus infection but they are indirect, i.e. serum antibodies. Unfortunately there aren't any pharmaceutical antivirals available for enterovirus but there are some other options.
  14. Gingergrrl

    Gingergrrl Senior Member

    @cbmtl Just wanted to let you know when you tagged "Ginger" vs. "Gingergrrl" it was another member and not me! I don't think it is an active member but just wanted to let you know-- no worries though!

    As far as EBV, if the IgM and early antigen titers are high, that can show active infection vs. IgG which is past infection.

    As far as thyroid, if your TSH is normal and you don't have the two Hashi's antibodies then you do not have Hashimoto's. I have it and I only take 7.5 mg of Armour per day so if you were taking 30 mg but don't have it, I could understand that making you very sick! Did an Endo diagnose you with it or was it something you were trying on your own?

    I was curious what tests the cardio had you do and what you meant by "heart pain?" Just wondering if any of your symptoms or tests are similar to mine.

    If you do have ME/CFS (and I don't know if you do) but if you do, then exercising and going to the gym will make it worse in the long-term vs. resting in the early stages. I wish I had known this myself so I would have rested after mono instead of rushing back to full-time work and activities and then relapsing.

    Best wishes,
  15. cbmtl


    New Jersey
    @ ahmo - thank you for the support.

    I suspect that I need to change my diet, but have a weird relationship with food that needs to be remedied. Food for me, while comforting, is more so a way to alleviate stomach aches. I have ridiculous cravings for carbs and sugars, (no candida or other bacterial overgrowth - based on tests-to-date) which often lessen my stomach pain. I haven't found that with lighter foods - i.e. salads. I don't know what that's all about and only recently recognized the relationship. Also, when I don't eat often/much my anxiety greatly increase. Weird.

    I suspect my cravings are my body's attempt to tell me that I am not getting enough vitamins and minerals. Also, possibly as a way to support a body that is in constant stress? While there may be a psychological component, I think it has much more to do with some sort of GI and brain axis irregularity.

    As I mentioned, i have had different food allergy panels, but will say, that my response to food seems to mostly be the same, whether it was identified as an allergen or not.

    I will discuss cytomel with my endocrinologist. FYI: While I have not taken straight T3 yet, I have already taken armour (30mg and attempted 60mg -- too sick to follow) and compounded T3/T4. I have also taken LDN, up to 2.5 mg, without benefit. My alternative medicine doctor suggested taking 3.5mg of LDN. Thoughts?

    With respect to vitamin B12, my values actually come back elevated. I still take a B12 (hydrocobalamin) and Folinic Acid (I believe) supplement. Again -- ugh -- no benefits. Is it possible to have high B12 values, but yet, the body is unable to successfully utilize B12? Meaning, can my labs not tell the whole story?

    I have tried different methylation protocols -- probably need to review this further.

    Big, big thanks for all of the links! I have read a lot...but also forgotten a lot. My brain and body are quite off and it has made it very difficult to thoughtfully and diligently help myself. This illness is very complex. So, while I have followed many different treatment protocols, I gather that it's possible that I haven't followed some long enough and/or increased dosages of meds/supplements that could actually help me. As mentioned, I need to experience some progression, so that I can have enough clarity to take the next steps.

    Thanks again!

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