1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

suggestions for alternative treatments?

Discussion in 'Alternative Therapies' started by KathySkes, Jun 17, 2012.

  1. KathySkes

    KathySkes

    Messages:
    78
    Likes:
    18
    I'm new to PR and pretty sure I want to take an all-natural approach to managing my CFS. Has anyone else done this and how did you proceed?

    I have been going to alternative practitioners for years but in my dreams I would like to have ONE person who can oversee everything I'm doing and offer suggestions. For example, someone who can do a stool analysis and blood tests (for example) and make suggestions for different alternative therapies. I already have many the other "pieces" of the puzzle available to me (acupuncturist/TCM doc I like, kinesiology, chiro, massage, etc.). The alternative MD I've been seeing for years tends to recommend the same things for everyone (she is on a Vit. D3 kick right now).

    If I can't find anyone I am interested in doing things on my own too, has anyone been down this road and can you offer any suggestions for either finding a naturopath (I'm in Ohio) or how to proceed on my own with stool analysis, blood work, etc.?
     
  2. uni

    uni

    Messages:
    53
    Likes:
    2
    Hi Kathy,

    I think it would be a good idea to list out your symptoms. What symptoms are your struggling with the most?

    Common CFS symptoms: post-exertional malaise, cognitive dysfunction, pain, insomnia, dysautonomia/POTS, irritable bowel syndrome/dysbiosis, food sensitivities, muscle weakness/muscles fatigued easily, and of course, fatigue

    Have you gotten any lab blood work to rule out other conditions? An immunological panel, cortisol, thyroid, CBC, etc.

    Keep in mind that natural does not mean better, and natural does not mean effective. Before you decide to see alternative practitioners, you want to make sure you do not have a well recognized disease/condition that can be treated.

    There are many alternative practitioners out there claiming to have a solution to your problems, but a lot of times they don't really know what they are doing. Same goes for MDs who claim your symptoms are not serious or real.

    Also, drugs can be effective at relieving symptoms. They aren't always the answer, but sometimes they can help a lot. Don't be so afraid to try them out unless you already have, or had a bad reaction.
     
  3. KathySkes

    KathySkes

    Messages:
    78
    Likes:
    18
    Hi Uni,

    Thanks for your reply. I have had a limited amount of blood work and the doc ruled out most of the major conditions, but probably not all. I don't think I had a CBC, but I'm pretty sure I have CFS. You can read my intro in "Introduce Yourself," I believe I have had it for nearly 30 years (since I had mono in high school), but have been largely high functioning. My current crash began after one dose of an antibiotic so that is mostly why I am not thinking I am able to use medicines, at least not at this point. I am not anti-med, they can definitely help some people. Perhaps because I have been using alternative medicine for years, that is the direction I am inclined towards now.

    The symptoms I would like help with are insomnia, PEM, and fatigue. I also have swollen lymph glands in my neck that are pretty uncomfortable, but I would consider that to be a minor problem compared to the others.

    Suggestions welcome.
     
  4. KathySkes

    KathySkes

    Messages:
    78
    Likes:
    18
    P.S. I didn't mean for my initial post to sound anti-med. I am considering all my options at this point, including traveling to one of the CFS specialists. However, I am worried about side effects since I seem to be so sensitive to meds. Has anyone else struggled with this?
     
  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    332
    Southern USA
    Integrative MD's have been the answer for me. Look for one until you find one that knows all about supplements and testing. I am doing fantastic now with my supplement schedule.

    I stay away from meds. I try to not use anything toxic unless there is no choice.
     
    KathySkes and justy like this.
  6. silicon

    silicon Senior Member

    Messages:
    148
    Likes:
    72
    I also consider myself "medication-sensitive", which is not uncommon with CFS. I am very wary of anything pharma, as I have been injured from their use/abuse in the past (following doctors' orders of course). I will still consider them though, but will watch very carefully for undesirable side effects.

    The work on methylation (there are many threads here about this topic) is intriguing, and doesn't require prescription medicine.
     
    KathySkes and justy like this.
  7. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,612
    Florida
    I see an integrative / functional doctor who's run a wide varirty of tests on me that have really
    helped us get a better pic of what's going on. There's no way I can understand even 1/10 of the tests
    she's run but after seeing her for four years now, I've just learned to trust her.

    She's ordered stool tests, serum nutrient deficiency testing via a local lab, nutreval, spectracell, hormones
    via saliva and blood, esonophils, gtt + insulin, etc.

    I have leaky gut, hashimoto's, hyperinsulinemia, kidney stones, lung scarring, left bundle branch block, pots, high esonphils at times,
    etc.

    My protocal has been paleo diet now wahls, supplements to address nutritional deficiencies, etc.
    Most of my cfs symptoms are under control but I still have oi / pots and pem. I need 1 - 2 mg melatonin
    and 50 mg 5 htp for sleep nowadays. I was on more mel, more 5htp and theanine.

    That's all I can think of for now.. Tc .. X
     
  8. justy

    justy Senior Member

    Messages:
    2,738
    Likes:
    3,076
    U.K
    Hi - like you i have had problems with mediactions making me more sick and tend to stear clear of them. Although i would take them if i had to ( i do have to take steroid inhalors and occasional antibiotics for my lungs) I have had help from Dr Myhills site and tests - she is in the uk, but her mitochondrial profile test and run down of what you need are available overseas and can be very helpful. She is a medical GP who specialises in envirnmnetal medicine (diet supplements etc) If you need to do self help she has an e book available for free on her website:

    http://www.drmyhill.co.uk/wiki/Main_Page

    I have also worked with a medical herbalist for the past 3 years who has helped me enormously. Unfortunately not with PEM and energy, but we have worked on my immune system - which was in a terrible state. She has also helped me with anxiety and general wellbeing. I havenmt heard anyone else on the forums discussing seeing a herbalist but i think its a good way to go if you can afford it. I dont know what the requirements are in the states but in the UK a MEDICAL herbalist as opposed to a herbalist is not a doctor but has a much longer training than a herbalist and can monitor health such as blood pressure if you are taking licorice (which i am for adrenal fucntion)

    Good luck, Justyx
     
  9. uni

    uni

    Messages:
    53
    Likes:
    2
    Hi Kathy,

    For fatigue, insomnia, PEM I would suggest you try sertraline for a few months. Yes, it is an SSRI (antidepressant), and you don't even need to have depression to try it out. I found it quite helpful for fatigue and post exertional malaise. It is one of the more stimulating SSRIs so it tends to worsen insomnia initially, but that problem should eventually go away as your body adjusts to the drug. The reason why it helpful is that it is anti-inflammatory, and increases cortisol (cortisol is usually somewhat low in patients with CFS). I know of several people online with CFS (and PEM), who have had some good results with an SSRI. I also know many people react negatively to this drug. It is best to start slow and work your way up. You can start at a dosage of 12.5mg or 25mg. Its no cure, but it can improve your symptoms. Its safe, cheap, and easily accessible.

    I can walk about 2 miles now without having significant symptoms, whereas before I would get symptoms after walking a mile, or just walking up the stairs.

    Sorry, I know this thread is talking about alternative treatments, but I just wanted to share my input. I haven't had any success with alternative medicine so far.
     
  10. KathySkes

    KathySkes

    Messages:
    78
    Likes:
    18
    Uni, I'm so glad you found something that really helped you. I looked into taking an SSRI a few months ago pretty seriously but have decided it is not the right choice for me, at least for now. I have had some success with both supplements and acupuncture so far but I understand they don't work for everyone. Everyone is different, I guess. Thanks for the suggestion, though. The insomnia seems to be improving a little.
     
  11. justy

    justy Senior Member

    Messages:
    2,738
    Likes:
    3,076
    U.K
    I'm so glad you found a medication to help you. I found an SSRI somewhat helpful when i first came down with M.E 17 years ago. However when i tried one again 4 years ago i had an extremely severe reaction which left me in a terrible physical and emotional state for at least two years! I wouldnt describe ANY SSRI as 'safe' althouhg i know many people both with and without M.E have benefitted fromn their use, i also know many who have had their lives ruined.

    All the best!
    Justyx
     
  12. uni

    uni

    Messages:
    53
    Likes:
    2
    I'm sorry to hear that. It's all very confusing. Unfortunately there is not enough research on this condition. I agree its best to be cautious about starting any drug. I guess I meant safe in comparison to other CFS treatments like antivirals or large doses of antibiotics. But each drug has its faults.

    Kathy, in terms of supplements, I did find curcumin and NAC to be mildly helpful. A note on the SSRI - I would recommend you take a look at your blood tests, see if you have an A.M. Cortisol test. If your A.M. cortisol is below 17 mcg/dL (approximate), its highly likely that the SSRI will help symptoms. In case you change your mind, I would recommend starting with 25 mg of sertraline, or 5 mg of escitalopram. I prefer sertraline since it causes less apathy for me, but everyone is different.

    Good luck!
     

See more popular forum discussions.

Share This Page