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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Some advice or insight appreciated.

Discussion in 'General ME/CFS Discussion' started by Martial, Jul 21, 2014.

  1. Martial

    Martial Senior Member

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    Hey Guys, I just came back from my LLMD appointment today with a decision that leaves me at kind of a cross roads. I have been using an herbal route to treat my Lyme this whole time but have not noted much progress, just got more sick and fatigued as a result. However some symptoms have gone and are over all better as well.

    In my opinion I feel my worsening fatigue and crappy feelings to herxing, I had been doing a full body approach looking over every possible stone for co infections, other combined dysfunctions like MTHFR, Pyoluria, Etc. I have had a lot of success in finding everything my body needs and even my testorone levels and CD57 levels started to go up again semi recently.

    The thing is though my infection has been there for a pretty long time and the bacterial load is EXTREMELY high. Even with herbs I do not feel as of right now it is enough to bring this load down enough. I am very, very conservative on the use of antibiotics.

    I never had an interest in using them however I don't want to damage my body any further with the infection itself either. I have issues that showed up with an MRI of my brain already. I was using a protocol by Nutrimedix, and Dr. Buhner among other things to really give myself fully back together so far, however it seems that even Dr. Buhner recommends a course of antibiotics with herbs for the very severe infections, same applies to Dr. Cowden.


    My doctor finally gave me a prescription of Ceftin a real Pharm grade abx today, along with wanting to put me on I.V. Antibiotics for a year in total so far as planned. I do not know if they will be mixed or I will switch from the ceftin oral to an I.V. antibiotic after.

    My concern about all of this is the risk reward about it. I feel in my case a duration of antibiotics is probably needed to really get this infection under some sort of adequate control. I will also be avoiding the major issue causing antibiotics like the quinoline based ones.

    Opting only for Ceftin or Doxy for both Oral and I.V. use. Though there are risks with them they same the over all safest compared to my other options. I could manage the common symptoms to watch out for like PCC infection, Digestion issues, allergic reaction, paying attention for candida, etc.. However, I really don't know if there is any damage or long term effects these antibiotics can do themselves.

    Normally I am usually gung ho about natural above all means since its much less problematic and toxic, but in this case with an infection serious enough I cannot disregard the use of pharmaceuticals that can easily assist in really bringing this bacterial load down for sure. I will be using probiotics to replace the flora killed off as well. I guess I am just curious if there could be potentially anything else I should take into consideration before I do this.

    I just really have my qualms at an infection this far imbedded in my system that natural herbs and system support are going to do it alone, I believe I probably need both types of support to work synergetically with each other. As opposed to just taking an antiobiotic alone and expecting a cure I am using cyst busters, bio film breakers, and a full body/lifestyle approach and doing everything I can.

    I know others here have a strong distaste for pharm antibiotics as I do too, but I also know in some cases it is absolutely needed. Since I do not have any real world views about defending or taking a stance on a personal belief I can easily see things from the whole picture, without my personal experiences or personality coming between it.

    I know there are very high educated and well informed people on this site, everyone here is very smart and intuitive in a lot of different aspects, so much so it is mind boggling. I just want to get some input from you all and ask what are you thoughts on this?
    rosie26 and merylg like this.
  2. daisybell

    daisybell Senior Member

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    Hi @Martial
    I am no expert that's for sure, but if you don't mind my two cents worth....

    It seems to me from reading your post that you probably need to take a different approach, and that means antibiotics. I am usually reluctant to take meds, but I sometimes remind myself that herbal alternatives aren't necessarily safer.... and if they aren't working, you need to change the approach.

    Supporting your system to cope with the antibiotics is entirely sensible. I would also seek advice before combining any prescribed meds with 'natural' remedies.

    Good luck with whatever you decide. I hope it works out well.
    merylg and Valentijn like this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Martial

    My own choice, together with my doctor's, (for treating Bartonella) has been a combination of abx and Cowden herbals. The herbals are probably less toxic but my doc does feel that I need abx as well. I am only a few months into it but so far, the herbals have been harder for me than the abx.

    Sushi
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  4. Wayne

    Wayne Senior Member

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    Hi @Martial,

    I agree with you that sometimes we need to consider things that we would prefer not doing. My own viewpoint regarding Abx seems pretty similar to yours, and even though I haven't tried them, I'm staying open to using them at some point if I deem it necessary. --- But I've long thought that before I resorted to doing them, I would first try other things that might work well, but would be much less likely to cause the kind of problems that Abx can, such as resulting c. diff. (Clostridium difficile) infections.

    The past few months, I've been gradually increasing my dosages of Liposomal Vitamin C to where I'm now up to 15g/day. I just recently started adding dissolved Himalayan salt (Sole) to this, and so am currently doing a Salt/C protocol -- [Lymephotos.com]. My improvements with the Lipo C have been gradual but consistent. Since adding the Sole, I've been doing even better, with my dysautonomia noticeably improved in the past few days.

    Along with this, I've been drinking Japanese Knotweed tea made from the leaves (grows locally). I anticipate harvesting some of the roots, which is what Stephen Buhner highly recommends. --- My progress has been steady, and I'm encouraged. I also have it in mind to try other things to supplement my current protocols. Since I'm noticing progress, I feel relieved being able to leave Abx alone for the time being. If I ever did choose to do them, I feel the progress I'm making in the interim will fortify my body a bit more to be able to tolerate them better.

    Hope this helps. Good luck on whatever you decide.

    Wayne
    Last edited: Jul 22, 2014
    merylg likes this.
  5. Hanna

    Hanna Senior Member

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    @Martial, I have taken no meds during 16 years for what I and docs considered to be M.E. That was before the late stage Lyme diagnostic. Considering the risks involved by untreated Lyme (especially the neuro-psy symptoms that were relatively new and developped), I decided that it was the time for me to use all the guns I could. I am just at the beginning of the route (3 months of ABX along with herbals), but I don't regret.

    I am looking a lot on French Lyme sites (that's easier for the language for me, but also interesting because there is there a long herbal and essential oils tradition) and see how people are reacting to treatments.
    What I see, is that with herbals, there is no consensus at al about the efficiency, and you have to rotate the different protocoles before seeing that there is one that may be beneficial. Some folks have been helped with GSE, colloidal silver (watch the concentration to avoid metal deposits), and teasel root tincture... Some have had no success with Cowden or Buhner... etc.
    But the vast majority took along the herbal route ABX as well.

    I think too it is worth for you to considere ABX treatment, and also to add some natural support for detox because of the die-off that will occur for sure. Good luck!
    merylg likes this.
  6. xrunner

    xrunner Senior Member

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    Hi @Martial
    My own thoughts in summary:
    -A combination of abx and herbs may work better than abx or herbs alone.
    -I'd check Burrascano's guidelines in terms of the abx considered. Given the potential side effects, if you decide to go on abx you want the ones that are most effective/later generations. Moreover, rotating combos of abx can be more effective than using always the same abx for extended periods of time.
    -Abx are not sufficient: exercise as soon as you can within your boundaries and biofilm needs to be dealt with somehow.
    -Treating co-infections first may make it easier to treat Borrelia later
    - Gut damage can be minimized with heavy use of probiotics (the usual few dozen billions of beneficial bacteria was insufficient in my case.
    Best wishes.
  7. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Are you also supporting your immune system so that it will be able to keep the bacteria at bey, once the abx has got rid of them?
  8. Martial

    Martial Senior Member

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    Hey guys thank you for all the input I really appreciate it! As for interactions of herbs and abx I fully looked into it. I am just going to use some of buhner things for systematic support, some bio film busters, and a few things for parasites/co infections.

    I am on 500mg Ceftin taken twice a day, I am also using 100 billion CFU of Pro biotics daily. My gut is going to still suffer a bit but I cannot have the best of both worlds. Being realistic at some of the things going on, I probably could die if I kept on going with just systematic support and a few anti microbial's alone. I definitely need these antibiotics to bring the bacterial load down because it has gotten way out of hand.

    I do a lot of other life style and diet things to keep myself in the direction of health too. I will continue some herbal regimes probably indefinitely for the rest of my life to keep myself well. Not things that are really beyond the norm though, just Japanese knotweed/resveratrol, and a few other system support things, also methylation support since I am heterozygous for MTHFR.

    Strangely so far I have to agree with what others said too. The herbs have in some cases brought out much harder reactions then the abx from things I was on before, the ceftin now doesn't seem to be causing much other then occasional stomach pain. I was originally treating a "sinus infection' with ABX and that is when I had my first major herxes and slide down the path of illness faster. Basically aggravating and activating the lyme to its more active state. At the time I started getting all kinds of aches and pains, and weird stuff from Doxy alone. The doctor was like I do not know what is wrong with you but Sinus infections, and Doxy does not cause that. LOL.
    Hanna likes this.
  9. Martial

    Martial Senior Member

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    As an update I may need to get off the antibiotics after developing a candida thrush on my tongue.. :(
    Damn it this has been becoming a real pain to deal with. I want the antibiotics to really bring this bacterial load down but maybe I will have to hope for strong herbals to work well too. It's like trading one thing for another with pharm. abx.
  10. Esther12

    Esther12 Senior Member

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    Good luck with everything.

    I'd advise you to be really cautious in this area, and to try to get second opinions.

    I'm concerned that some dodgy doctors talk up 'herxing' as a way of distracting attention from the fact that they don't know what they're doing, and often make their patients worse. There are also problems with doctors using unvalidated testing to wrongly tell patients that they have Lyme.

    My hunch is that you might be better off without this doctor, and instead just doing what makes you feel best, and seeing if your body can improve things itself.

    At the moment, I think that it pays to be cautious and sceptical when it comes to medicine that doesn't have really good and clear evidence of efficacy.
  11. Martial

    Martial Senior Member

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    Well I had a blood test that came back for the antibodies, and had a history of tick bites so even any functional doctor would give me antibiotics, and with brain involvement even IV antibiotics by CDC standards. I know I have the infection and it is proving very active with all kinds of wierd symptoms specific of lyme, joint swelling and pain, bells palsy, brain inflammation and nervous system dysfunction. I just feel kind of conflicted because I know that antibiotics really clear out an infection like this, but I can't take them if I am gonna get major fungal issues already even by doctors orders, also risking C Diff. At the same time there is well known herbal anti microbials and other things I can try, it is just with an infection this bad I don't know if that will cut it alone. There is also major issues and its horrible for me to be on antibiotics for a longer extended period of time. Blah, can't really have the best of both worlds I guess.
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  12. Esther12

    Esther12 Senior Member

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    Maybe it would he worth seeing a new doctor for a second opinion? It seems that this first one has not been great, and I'm not sure if there is any good evidence for herbs treating Lyme disease. This his was recommended to you does leave me worried that the blood test used is not reliable either. I know it's hard to work out what is best. Wish I had better advice for you with it all.
  13. Martial

    Martial Senior Member

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    That's alright man, I appreciate the input. Might have to look into getting a second opinion as well. He wants to use antibiotics though, just combines them with herbs too. Just said I can't get on them if I am having yeast issues as it will make it much worse until it clears.
    Esther12 likes this.
  14. Esther12

    Esther12 Senior Member

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    Yeah. With the potential trouble of anti-biotics, it does seem worth trying to get good evidence that they're likely to be helpful before going on them. Good luck.
    rosie26 likes this.
  15. Wayne

    Wayne Senior Member

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    Tood, sorry to hear about your setback. Not to be overly redundant, but I would again encourage you to consider large doses of Liposomal Vitamin C, which is strongly anti-bacterial (anti-viral and anti-fungal as well). It's working well for me.

    Best, Wayne
    rosie26 likes this.
  16. rosie26

    rosie26 Senior Member

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    @Martial do have sinus problems as well ? I can't remember.
    I agree with Wayne that Vit C can be helpful too in making your body more resilient to get some symptoms under a bit more control. Worth trying.
  17. Valentijn

    Valentijn Activity Level: 3

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    Does your doctor have you on probiotics and a low-sugar diet during treatment?
  18. Martial

    Martial Senior Member

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    I am using it now actually pretty expensive to use the Dr. Mercola Brand though.
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  19. Martial

    Martial Senior Member

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    Not anymore, I had pretty bad sinusitis issues before though
    rosie26 likes this.
  20. Martial

    Martial Senior Member

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    Yes, I don't eat sugar and was taking 100 billion cfu's a day. Sadly even with all of that yeast overgrowth is extremely common with antibiotics.
    Valentijn likes this.

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