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Reality of my ME/CFS

Discussion in 'General ME/CFS Discussion' started by kristysmiles, Jun 3, 2014.

  1. kristysmiles

    kristysmiles

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    @Allyson
    Spoke to my doctor about POTS, and she said that they do not test for it at my hospital because the test is "too barbaric"


    Also spoke to my Psychiatrist this week, and she gave me the impression that she didn't believe my diagonsis was real and that everything was in my head. I went the ER last week for severe nerve pain in my jaw, and they told me I had taken too much pain medication for it (2x 500mg Naproxen 8 hours apart, I was still in pain hence why I went to the ER) and that I should just go home and ice it. When I asked what they wanted me to do for the pain, they looked at me like I was stupid and said "ice it". Apparently you can ice away nerve pain now, who knew? I talked to my friend who is going through nursing school and she said that is the treatment they give druggies. Just makes me wonder if I have this note on my medical history that says "hypochondriac" or something because of all the things wrong with me.

    I understand that I am very high functioning for individuals with CFS/ME, but if you look at my activity level pre vs. post illness there is a HUGE difference. I was a three sport varsity athlete in high school plus I played 3 club sports, a division 1 college athlete (training 6+ hours a day), and prior to the onset of my illness I was running 5-12 miles a day with no problems. Now I struggle to even make it in the gym, let alone do any sort of running. It's so frustrating that I get this kind of treatment from the medical professionals who are supposed to be helping me. I want to go see these specialists who know about more about CFS/ME and correlating/similar diagnoses, but until I get out of the military (2 years left) I will never have the time to travel anywhere to get seen. I am barely able to work, but they won't medically discharge me and I don't see why they won't unless they really don't believe I'm sick. It's so frustrating and I don't know what to do. I'm so tired of wasting my time going to doctors who aren't even trying to help me. None of them have even bothered reading any research on this condition. I also work in an environment that gives me no leeway for my medical condition and if anything ignores my doctors' recommendations so I am dealing with a lot of stress that is making things a lot worse. Not sure how I can continue, but I am afraid that I am going to get military disciplinary action for being unable to do something.
     
  2. Allyson

    Allyson *****

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    afraid that is true that is is barbaric !

    I have had it done3 times andit I simplend straight forward

    you can even do it yourself at home if you have a BP monitor


    POTS is a very common ME symptom so we should all be tested for it - treating POTS often helps a lot of the other symptoms
    ALLY
     
  3. Allyson

    Allyson *****

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    also how dare a Psychia

    Also why does a psychatrist feel qualified to diagnose or not an organic illness she knows next to nothing about - same as my cardiologist diagnosing a psych disorder ( I was later diagnosed wit EDS and POTS by a professor of medicine - 2 things she missed while delving into my personal life by the by)- she has no qualifications in that field and if she suspects it should refer you / me to testing by an expert in that area ....not make diagnosis themselves in an topic outside their area of expertise...

    Enough of this patronising garbage IMO

    Ally
     
  4. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @kristysmiles I just discovered this thread and wanted to see how you were doing and if you made any decisions re: seeing a specialist? I am in the process of trying to figure out which specialist to see and going to post about that shortly. Thank you for your military service and I wish the VA was more willing to pay for treatments for veterans.
     
  5. kristysmiles

    kristysmiles

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    @Gingergrrl43
    I have not made a decision on a specialist yet. I live in Hawaii and there are no 'true' specialists out here. I feel that I am unable to continue to perform my duties in the military, but my doctors for some reason do not feel the same way or for some reason do not want to seek a medical evaluation board. I am currently trying to see a non-military doctor with the hope that they have a different opinion that I can take back to the military to convince them to change their minds. If I am successful, I will be able to get out of the military and recieve treatment from the VA that Active Duty will not provide. (Yes, I called VA and they said they would offer me accupuncture, physical massage, etc as perspective treatment options, but active duty has a policy in place that prevents those options for me). Not that I trust the VA to give me decent care or those treatments to work, but at least I will be free to move wherever I want to seek further treatment options.


    Just to update everyone else. Neurology refuses to comment on my medical condition, Endocronology refuses to see me, Cardiology recongizes I have abnormal Tachycardia episodes but can't offer any beneficial treatments, Psychiatry thinks it is all in my head, and Rheumotology and Pain Management say they have no treatment options/have no clue what's going on, and dental says my TMJ is stress-releated. Still waiting for a follow-up with my Sleep Medicine doctor for hypersomnia and periodic limb movement disorder (tried Trazadone, Seroquel, Mirapex, Provigil thus far). I also took all the recommendations I got to my primary care doctor (Internal Medicine), but she didn't seem willing to delve further into those possibilities.

    So if anyone else has any ideas of ways to convince my doctors that they are making me sicker by forcing me to work full-time without being able to seek PROPER treatment please let me know. I'm tempted to volunteer for some things that I know I can't do because I'll pass out just to prove a point, but I am a horrible liar and would probably tell them I did it on purpose (which would probably cause them to add points to my crazy person diagnosis).
     
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  6. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @kristysmiles, That would be great and I hope this goes well for you. Let us know if there are any updates.

    I am so sorry to hear that and it seems like the military would understand better than anyone about GWI for soldiers who were in Iraq but I guess that would mean that they have to admit that there was a problem with the Anthrax vaccine and other causes.

    I wouldn't do that because you don't want to jeopardize your health and make yourself sicker by passing out and I agree if you tell them that you did it on purpose, they will further label it with a psychiatric cause. I think your best bet (if you can afford it) is seeing specialists outside of the military and trying to get some proper care. I really feel for you as it is stressful enough for all of us to get treatment without the added burdens that you are having to go through.
     
    Last edited by a moderator: Jun 26, 2014
    Valentijn likes this.
  7. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Sushi Technical question- I tried to break up the quotes in the above post but it didn't work right. I am not sure what I did wrong?!
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Not sure what happened :). I just edited it and deleted the words quote and the brackets then selected the quoted text and hit the " key. That should work for you next time...I hope!

    Sushi
     
  9. kristysmiles

    kristysmiles

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    Just to update. My Sleep Disorder doctor put me back on Provigil (higher dosage) and says I now show signs of hypersomnia, insomnia, as well as having periodic limb movement disorder....hmmmm wonder why I'm so tired? (*sarcasm)

    Psychiatry decided to diagnose me with an adjustment disorder, whatever in the world that means. They are talking about putting me on anti-anxiety or anti-depression meds though I don't think I have anxiety or depression except when really frustrating things happen (like doctors not taking my condition seriously!). I don't feel anxious or depressed I just want the military to recongnize my condition is real and either offer treatment, relief from certain activties that aggravate my condition, or a medical discharge so I can seek treatment on my own. Because my doctors won't recongize, my command thinks I'm just making excuses because I don't have a doctors note specifically preventing me from doing certain things that make me sick (ie. standing in formation especially in the heat for a certain amount of time makes me feel like fainting and throwing up). I'm still only 22, so I'm trying to see if I'm still covered under my parents' medical insurance so I can use it to see non-military doctors.
     
  10. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @kristysmiles I am so sorry to hear the latest update and I really think if you can see a private doctor through your parent's insurance, you should go for it (and as fast as possible!) Are your parents local to you and are they supportive? I know there are many issues going on but I wonder if you start with a private cardiologist if they can write you a note that you are unable to stand in the sun in formation without fainting and throwing up. I am trying to brainstorm something that will give you the evidence that you need (even if they will never admit to GWI.)
     
  11. kristysmiles

    kristysmiles

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    @Gingergrrl43
    Thanks for the help. I just confirmed I am on my parent's medical. No they are not local unfortunately. I am in stationed in Hawaii with the military and they are back home in Alaska. I am trying to set up medical appointments, but there are no true CFS/ME specialists out here so I am just trying to decide who I need to see. I think I'm going to try and get an appointment with an internal medicine doctor (or GP if those efforts fail) and see what they recommend. I just need to ensure I properly prepare for my appointment by drafting a comprehensive list of my symptoms. My memory problems and brain fog make me seem like a spastic nutcase when I try to describe what's going on because I jump around in my topics and forget what I'm talking about sometimes (My friends describe it as something similiar to ADHD). I did just find a regulation DODI 1332.38 that says Chronic Fatigue Sydrome is cause for recommendation to the Military Disability Evaluation System, which if I'm reading correctly means they should have started the Medical Board process to determine if I was fit for duty right after they 'officially' diagnosed me back in August 2012. Praying for progress!
     
  12. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @kristysmiles I had one other thought, is there a social worker in the military for your unit who could help with advocacy? I know you may have already gone this route but sometimes having the social worker serve as a liaison with the doctors can be helpful. Also, I think if you write down all of your symptoms for the private doctor and explain that you were in perfect health, an athlete, etc, and that these problems are not life-long but came on acutely after service in the gulf, I am hoping they can help you. Hoping the private doctor will not be biased and can evaluate you objectively.
     
  13. taniaaust1

    taniaaust1

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    Yes you definately need testing for POTS, maybe a tilt table test if a poor mans test in a clinic doesnt show it.
    Newly developed POTS also would then bring in corordination decreasing, concentration issues and memory issues (due to lack of blood getting to the brain) ... and often does cause chest pain for some.

    With your period like that. A very common cause of this is PCOS (polycystic ovulation syndrome), so you should see a gyno to ask about this.. PCOS causes cysts from the unreleased eggs so instead of just having one end devleoping in an ovary at a time, one ends up with many partly developed eggs there which develop cysts.

    The tricky thing is seeing you also have ME/CFS is a gyno could easily miss the diagnoses as its also usually diangosed by hormone tests tooo and with the ME/CFS, your hormones may not present as they usually do in PCOS!! ME/CFS people commonly get issues with low testosterone etc. So my original PCOS hormone issues have been affected by the ME/CFS so I no longer show the hormonal problems of that but the thing is, I still do have it.

    Those who have PCOS, 90% of them get insulin resistance (hyperinsulinemia.. pre-diabetes) or diabetes by the age of 40. This issue can cause ones weight to have huge fluctuations. (It does that to me, I see a leading specialist in the field for insulin issues).

    Note.. if you do have insulin resistance/ hyperinsulinemia, that can cause heaps of issues (but 95% of doctors arent aware of this as they arent well educated in this issue). My specialist for this calls it the pandoras box of illnesses due to just how many symptoms it can cause. This issue will make ME/CFS worst.

    You may consider at some point seeing if you can have a 2hr Glucose tollerance test with insulin levels included to make sure you dont have an insulin problem going on if you have PCOS but without it manifesting in the normal way due to the ME/CFS. Note insulin tests need to be centrifuged and transported to the testing lab on ice (so cant be done in all places). An issue with this is that most doctors as they arent used to these tests, they arent aware that the insulin can degrade during transport to the lab and hence cause a wrong result (eg a false negative)

    First things, first though, you need a POTS test and I think you need to really bug your doctors about this (and also consider seeing a gyno over if you could have PCOS.. just let them know that ME/CFS can lower the hormones usually seen in it).

    You may also want to check out the canadian diagnostic criteria so you know more where you fit in the ME/CFS stuff. http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf Knowing where you fit with this is important as not all "CFS" people have the same thing and knowing where you fit, helps to make better decisions on what may or may not help (and just as importantly, what is likely to make one worst!! eg GET isnt really advisable if one has canadian consensus defined CFS).
     
    Last edited: Jun 28, 2014
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  14. Adlyfrost

    Adlyfrost Senior Member

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    I have heard of people getting more luck with fibromyalgia diagnosis than CFS/ME in getting disability benefits, and the symptoms are similar.

    Also, some CFS specialists, like Dr. Chia, can test, and even biopsy for certain pathogens - viruses, bateria, etc. I don't know if a positive lab test for a pathogen would help your military docs recognize your illness or not. My heart goes out to you. Will pray for progress too!
     
  15. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @kristysmiles I was wondering if you are still checking the board and how you are doing? I hope you got some help and relief and have been thinking of you and hope you are doing okay.
     
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  16. Adlyfrost

    Adlyfrost Senior Member

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  17. Katherine

    Katherine

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    Since you are only 22 you obviously aren't a Gulf War Vet, however you may have been exposed to certain pathogens that were released over there during that war. Recent vaccinations may also need to be considered. Could be a combination of both. You should probably try to contact Garth Nicolson first - http://www.immed.org/ He is also on facebook https://www.facebook.com/dr.garth.nicolson

    His daughter was deployed during the Gulf War and she came back with GWI. He's incredibly experienced and has helped a lot of veterans and civilians get treatment for GWI. If you can, I would seek him out personally.

    Although you didn't serve in the Gulf War you might find the following interesting:

    Potential Sources of Exposures That Could Have Caused GWI

    We consider it quite likely that many of the Desert Storm veterans suffering from the GWI signs and symptoms may have been exposed to chemical/biological toxins (exogenous or endogenous sources of these agents) containing slowly proliferating microorganisms (Mycoplasma, Brucella, Coxiella, etc.), and such infections, although not usually fatal, can produce various chronic signs and symptoms long after exposure. This would account for the illnesses being passed to immediate family members. The DoD has maintained that Iraqi offensive Chemical and Biological Weapons (CBW) were not released during or after the Gulf War, but over 14,000 Chemical Weapons alarms sounded during but not before the conflict and we did not have detection equipment forward deployed to be able to determine whether Biological Weapons were present. The Iraqi armed forces were operating under Soviet War Doctrine, which stresses offensive use of combinations of Chemical and Biological Weapons together with conventional weapons [23]. Evidence presented to Congress [8] indicated that it was extremely likely that Chemical Weapons were released during and certainly after the conflict when bunkers containing CBW were destroyed. Although chemical and/or radiological exposure(s) can result in somewhat similar signs and symptoms to those found in GWI, this does not explain the apparent contagious nature of GWI and the delayed appearance of similar signs and symptoms in immediate family members. Fortunately, the types of slow-growing, chronic infections found in a subset of GWI patients can be diagnosed and successfully treated using our published protocols [9-11, 20-22].

    There were several potential sources of chronic biological agents in the Persian Gulf Theater [9, 23]. First, deployed soldiers were given multiple inoculations, in some cases with experimental vaccines in unproved immunization schemes, such as vaccines that were given all at once instead of using an appropriate schedule of inoculations over months or years. Multiple vaccinations given simultaneously can result in immunosuppression and leave an individual susceptible to opportunistic infections. Some of these experimental vaccines could also have been contaminated with small amounts of slow-growing microorganisms. In fact, some of the vaccine lots to be sent to the Gulf were removed because of "microorganism contamination." Next, the Iraqis were known to have extensive stockpiles of Biological Weapons and the potential to deliver these weapons offensively, at short range in modified Italian-made biological sprayers that deliver Biological Weapons onto the sand to create exclusionary zones or 'biological minefields' and at long range in modified SCUD-B (SS-1) missiles with 'airburst' warheads or sprayers carried by aircraft. As mentioned above, many of the storage and factory facilities where CBW were stored were destroyed immediately up to, during and after the Desert Storm ground offensive, releasing plumes containing these agents high in the atmosphere where they could be carried downwind ('blow-back' exposures) to our lines. These and other possible mechanisms of potential exposure must be carefully examined, not categorically dismissed by DoD personnel in Washington DC with little first-hand knowledge of the conditions on the ground. A number of possible reasons exist that could explain why the DoD and DVA deny that our forces were exposed to CBW agents during the Gulf War, but this does not rationalize the poor responses to GWI casualties.
    http://www.gulfwarvets.com/testimony.htm

    You mentioned that you had the anthrax vaccine before being deployed:

    'Although all U.S. Armed Forces personnel have been ordered to receive the anthrax vaccine, questions remain concerning its efficacy and safety and its intended use to counter a biological weapons attack. Since published data on the anthrax vaccine are scarce, it is difficult if not impossible to evaluate claims of its effectiveness and safety. In addition, questions concerning its safety have been raised, based on reports that associate the anthrax vaccine with high frequencies of adverse reactions and chronic illnesses. The chronic signs and symptoms associated with anthrax vaccination are similar to those found in Gulf War Illness patients, suggesting that at least some of the chronic illnesses suffered by veterans of the 1991 Gulf War may have been caused by vaccines. Some commercial vaccines have been found to be contaminated with microorganisms, such as Mycoplasma species, and this type of microbe has been found in the blood of a sizable subset of Gulf War Illness patients along with antibodies against an unlicensed vaccine adjuvant. Given concerns about safety and efficacy of the military's vaccines, the strategy of using multiple vaccines to protect against biological warfare agents must be re-evaluated in the context of integrated warfare and the potential simultaneous exposure of forces to chemical, biological and radiological agents along with conventional warfare environmental (smoke, chemicals, etc.) exposures.'
    http://www.jpands.org/hacienda/article43.html

    'The current anthrax vaccine has not been shown to be safe or effective. As a military vaccine, its production has bypassed civilian standards for inspections, consistency, good manufacturing practices, and expiration dates. Potency is uncertain, and adverse reactions have been ignored, despite the fact that the vaccine has engendered very high rates of adverse event reports. Gulf War Illness appears to be, at least in part, a consequence of anthrax vaccination. The Defense Department has tried to control the reporting of vaccine-related adverse events, and has withheld release of adverse event data. Large numbers of recently vaccinated Armed Forces personnel are ill, many with symptom clusters that resemble Gulf War Illnesses. The FDA has not properly performed many of its oversight duties for anthrax vaccine, and proposes to further weaken its own standards for vaccine licensure, possibly eliminating human studies. This would severely undermine new vaccine safety and efficacy for both civilians and the military. The history of the anthrax vaccine program presages potentially very serious problems with the vaccines yet to be licensed, and should provide a clarion call for oversight of all military vaccines by an independent civilian authority.'
    http://www.immed.org/GWI Research docs/JNEM_Nass_Nicolson-.pdf
     
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  18. kristysmiles

    kristysmiles

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    @Gingergrrl43
    I know the Army has social workers, but they aren't the type that advocate for anyone. I'm hoping the private doctor will give better care, when I get an appointment.

    @taniaaust1
    I think PCOS is likely, and I saw a gyno almost a year ago with the same issues. He was a complete idiot and unhelpful to the point of being extremely rude and disrespectful. He said that what was causing my symptoms didn't matter and that if I took birth control pills it would 'mask' the symtpoms and not bother me as much. They tested my hormone levels, but did it with no regards to my cycle. (I kow refuse to take BC pills, because I know I won't be able to track the changes in my symptoms as accurately)
    My results were:
    Lutropin, Serum or Plasma Quantitative 2.0 mlU/mL
    Folitropin, Serum or Pasma Quantiative 1.7 mIU/mL
    Estradiol, Serum or Plasma Quantitative 66 pg/mL
    They seemed low to me, but my doctor says they are within the normal range.

    @Adlyfrost
    They sent me to a Rheumotologist to 'check' for Fibro, and I don't have any of the pain/tender points associated with it. I was tested for EBV/mono when I first got sick because that's what it felt like. My EBV Capsid Ab, IgG is higher than normal. Negative for IgM, difuse Ab, and nuclear Ab. My doctors don't seem interested in researching CFS/ME at all, so I doubt they'll test for the retroviruses XMRV, etc. Been tested for a copper toxicity and a few other things, but all come back negative. I do have high C-reactive protein, which my doctors interupt to mean 'oh you have inflammation somewhere.'

    I looked for CPET testing in Hawaii, and I can't find a specific testing center (doesn't mean they don't have it). The problem with going to one outside of Hawaii, is the requirement that someone has to drive me to the test (and the time and expenses). I've been having weird chest pains lately, and a dry cough/heave with exertion. It comes with this weird feeling that there is a hole in my lungs, but I can breath fine and I am not hyperventaliating or anything. I see a doctor today about it, so maybe they'll look into possible respriatory issues and try either the CPET or test my Vo2.

    @Katherine
    Wouldn't be suprised if the military 'accidently' exposed us to something than covered it up. I got my anthrax and small pox shot at the same time, and had a reaction to one of them. I assumed it was the small pox because of which arm I got it in, but it could have been either. I have a enlarged supraclavical lymph node that is oh so kindly chilling on my collarbone from one of those shots, they did a ultrasound of it, but it was smaller than (3cm?) what is considered concerning.

    Does anyone have changing GI issues/reactions? I've noticed that sometimes I can eat certain foods and I'll be fine, but other times it does a number on my GI system for a few days. I was taking fish oil supplements daily for almost a year and never had a problem until this week (the issues went away when I stopped taking it). My food sensitivity list is also growing.
     
    Last edited: Jul 15, 2014
  19. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @kristysmiles It was good to hear an update from you and I was worried about you! I thought the army social worker might be a long shot and it sounds like seeing a private doc outside the military is your best bet.

    I suspect the anthrax and smallpox vaccines triggered your reaction as well as what you may have been exposed to overseas (viruses, chemicals, etc) and from what I have seen, the army is not going to take responsibility for anything.

    I had major GI issues (and saw two gastroenterologists earlier this year) and they were only fixed when I saw a naturopath (not sure if this is an option in Hawaii?) She ran a lot of tests including a food sensitivity test from US Biotek labs. She put me on two probiotics, a digestive enzyme, GI repair powder drink 2x/day, and a very strict diet with no gluten, dairy, eggs, sugar, yeast, soy, corn, etc, and I can honestly say that my GI issues are gone and my stomach is close to perfect. The US Biotek test is really good IMO if you can get it. I will be on this super strict diet for three months (about half-way done) and then we re-do the test and slowly add certain things back in.
     
  20. kristysmiles

    kristysmiles

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    @Gingergrrl43
    I've been slacking at making an appointment with a private doctor, mostly because I just don't know who to see. Being in the military, any number of things could have caused or aggravated it.

    I think the GI issues may be a bigger issue than I orginally thought. My doctor put me on Nexium last week, since I was having chest pain that was indicative of acid reflux (didn't know you could have that eating health at 23, today's my birthday! :)) Not sure it was the Nexium, but I've felt like I've had an increase in energy since I've been on it. They've tested me for celiac previously, but I'm wondering if it's GI related (especially since Colon cancer runs in the family) since this medication has had such a big impact. I have another appointment in August, so maybe I'l inquire about further GI-related testing.

    I theorize that ME/CFS type symptoms can be caused by a wide range of things, because if a major bodily system is acting abnormally I imagine it affects all of them. Like a chain reaction, though I feel that there must be something in the brain that is unable to fix or prevents the body from fixing whatever sets it off. Bacteria and parasites are the first things that come to mind for GI symtpoms. Thoughts?
     
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