Antibiotics and CFS...

Discussion in 'Fibromyalgia Main Forum' started by Julie81, Jul 12, 2006.

  1. Julie81

    Julie81 New Member

    May I suggest to anyone with CFS to get there doctor to try a round of anti biotics on them. I just went threw a year and a half of living hell. I was also diagnosed with CFS had all the signs and symptoms. I just convinced my doctor to try a round of anti biotics after nothing else was working and I was fed up and willing to try anything. Like the rest of you no blood tests or anything was coming up with an answer. I've only taken a days worth of pills and am already starting to feel tons better. Worth a try :)
  2. NyroFan

    NyroFan New Member

    julie:

    It might help you, but I doubt the doctor will keep you on it forever. Consider it a help for the day. Being on
    antibiotics at a 'regular' dose could cause thrush.


    Since I do not know the dose, maybe I should not have said that. So, please forgive me: it wes the first thing that came to my mind.

    I hope the dose continues forever.

    nyrofan
  3. lenasvn

    lenasvn New Member

    I had a round of Antibiotics this past winter, and I felt better too, not right away of course, but I could tell more than the intended got better (sinuses at that time). The feeling of being a virus-hotel went away some,,,LOL!
  4. mrdad

    mrdad New Member


    I too have CFS most likely share many of the same pro-

    blems. Besides bacterial infections, I starting to side

    side with the viral infection theory for many of us such

    as HHV-6. The "triggers" may differ. I'm presently work-

    on both those possibilities as well as others.

    Hope you have a good day!!
    MRDAD
  5. maps

    maps New Member

    Have you been tested for microplasma. I tested positive 3 years ago and have been on antibiotics ever since.

    My latest test showed negative Ya! no more antibiotics, now I will wait and see if anything else crops up.

    regards
    maps
  6. minimonkey

    minimonkey New Member

    For those of you who feel either remarkably better or remarkably worse on abx -- have you considered Lyme disease? I hate to sound like a broken record, but a lot of folks who have Lyme (sometimes with negative test results) are first diagnosed with CFS or FMS (I was) .

    Mycoplasma is also a very real possiblity.

    Interesting about the lupus connection to Doxy -- I've never heard that before.

    If you DO have Lyme, and take abx, you may get a huge symptom flare -- that is pretty diagnositic for Lyme, actually.

    I know there has to be an ongong infectious component to these illnesses -- bacterial, viral, protozoal, parasitic, or some combination of those.
  7. victoria

    victoria New Member

    for the 'stealth bacteria' in general ... they hide out inside blood cells and tissue cells and wherever they please... can also form cysts to hide from abx which is why infections can come back. Even e. coli can do this, and it's not considered a 'stealth' organism.

    Add to that the fact some organisms have a very low replication rate. Lyme is known to take 28 days.... so it makes sense that longer periods of abx are necessary for many reasons.

    It is good to be tested as minimonkey suggests, but realize that the tests are unreliable. What really counts is one's response to the abx. And realizing that you may feel better or get an exacerbation of symptoms from the toxins released as they die.

    all the best,
    Victoria


    [This Message was Edited on 07/12/2006]
  8. victoria

    victoria New Member

    this is a synopsis of a speech given by Dr. Garth Nicolson about Lyme, mycoplasma etc, found it at CanLyme (Canadian Lyme Assoc):

    --------
    Common Cause Medical Research Foundation

    Professor Garth Nicolson is President and Chief Scientific Officer for the Institute of Molecular Medicine (http://www.immed.org). A main interest of his is researching the role of chronic infections in many different chronic diseases such as Chronic Fatigue Syndrome, Gulf War Illness, Fibromyalgia, Rheumatoid Arthritis and autoimmune diseases.

    One of the first things that Prof. Nicolson mentioned was that a large subset of Chronic fatigue patients actually have Lyme Disease. Nicolson feels that Chronic Lyme involves viruses, bacteria and fungus. He says that this chronic state evolves over time.

    The Lyme infection can weaken the system and allow for these additional microbes to accumulate. It is also possible that it could work the other way around. A collection of other microbes, besides Lyme, could weaken the immune system, which could then allow Lyme to become chronic.

    Nicolson discussed co-morbid states, explaining that most patients with chronic illness are infected with more than one pathogen. Each disease causes its own problems and this could be the reason why so many signs and symptoms keep shifting.

    Some of the culprits he mentioned are: mycoplasma, chlamydia, rickettsia, brucella, borrelia, coxiela, EBV, HHV6, CMV, enterovirus, Hepatitis C and fungus.

    Each patient has their own unique overlap of symptoms. Because of this they end up going to different specialists who hand them a specific disease label to match their set of symptoms.

    There are usually no definite tests, causes or cures for all the subsets; only symptomatic treatments are offered. In the meantime, these infections continue to weaken the body.

    Fatigue is the most common symptom of all those diseases because the pathogenic intracellular bacteria attack the mitochondria or battery of the cell. Lipids are the insulation for these mitochondria, and when the lipid membranes are stripped off, this depletes the energy and this is why fatigue is the most common complaint.

    One of the keys to improvement then would be to somehow restore the mitochondria of the cell in order to restore energy. Some nutritional supplements can restore mitochondrial function and therefore improve energy.

    Nicolson also advised checking for dental infections in chronic illness, as this is a very efficient means of transporting germs into the body. And he noted that being bitten by a tick is not the only way to acquire these infections. Some are sexually transmitted, and some can be passed through the placenta, breast milk, tears and other bodily fluids.

    One of the most important bits of advice he shared with us was to keep your immune system in tip top shape. He suggested reducing alcohol, caffeine, sugar and fats. Some of the immune enhancements he spoke of were: natural antimicrobial products, hyperbaric oxygen treatment, hydrogen peroxide baths, ozone therapy,

    Infrared saunas and sublingual B vitamins. Vitamins C, E and CoQ10 were also thought to be needed. Helpful minerals mentioned were zinc, chromium, magnesium and selenium.

    He stressed the fact that antibiotics by themselves will not cure you. It is up to the patient to follow appropriate healthful suggestions.
    ---------

    V


    [This Message was Edited on 07/12/2006]
  9. Mikie

    Mikie Moderator

    Especially the info from Dr. Nicolson and the info on fibrin overgrowth.

    Sixty to seventy percent of us test pos. for mycoplasma infections. Many with Lyme are diagnosed with CFIDS and go years without realizing they have Lyme.

    I was on Doxycycline for 2 1/2 years with no side effects. It was either that or letting the mycoplasmas continue sucking the life out of me. I had no problems with fungal infections of opportunity but I used probiotics and my electronic zapper to keep the yeast away.

    I could not take the bromelain as it upset my stomach. My doc did prescribe Heparin injections. What an immune response I had when the pathogens were exposed in the bloodstream. Yikes!

    I was also on Famvir for chronic viral infections. It is not uncommon for us to have HHV-6, CMV, and/or EBV chronically. These infections can be stealth, thriving below the immune system's radar system.

    I still keep the Doxy on hand for when I relapse and the mycoplasma cysts deep inside my body's tissue try to reactivate. There is a transfer factor for mycoplasmas. ProHealth has a website for physicians and it is available, only to physicians, at that site.

    I still keep some AV on hand too when things get riled up.

    As most of y'all know, I switched to transfer factors C and 200 for three months. I now only pulse them for a couple of days every 6 weeks. They still produce an immune response and a Herx each time.

    I kind of got off the subject--big surprise :) When the ABX cause us to feel better it is indicitive, but not definitive, of an ongoing bacterial infection. ABX can also cause us to feel worse and then Herx, in which case one knows it is killing bacteria.

    I think with these illnesses, we are walking Petri dishes and until we address our chronic infections, we cannot truly heal.

    I'm glad the ABX are helping. Check Dr. Nicolson's website, Immed, for info you can give your doc.

    Love, Mikie
  10. happygranny

    happygranny Member


    Hello,

    I just posted this on the Lyme message board and thought I would post it here as well for anyone interseted:


    It has been a long time since I have posted at Immune Support. As one Dx'd with FMS & CFS, I spent a lot of time at that message board until I heard about Lyme Disease last fall.

    A friend who had the same DX as me went to a Lyme Literate doctor and started treatment. After 5 months she phoned me to tell me how much better she was doing.

    Of course after hearing that and reading about Lyme disease and symptoms,I went to that same LLMD in Hope, British Columbia. After exam with a lot of symptom questions I was given a Dx of Lyme. Blood test was negative, but did test low positive for Erhliciosis and Rocky Mountain Spotted Fever.

    I started the ABX treatment Nov 23rd 2005. He prescribed Ketek, 400 mgs twice a day and Flagyl 500 mgs twice a day.

    I herxed big time, and cut the flagyl down to 250 twice a day.

    It was a miserable 5 months with only the occassional day of feeling good. I was getting discouraged. Then it seemed I turned a corner and started feeling a lot better.

    After seeing the LLMD in early May, he changed Flagyl to Tinidazole because of the Peripheral Neuropathy I was experiencing. That helped with the burning, tingling, aching extremities.

    I did start taking Neurontin/Gabapentin for the general body pain and it really helped, but the improvment in my energy level is astounding.

    At this point I think I could consider going back to work as far as my energy levels go, however there is still little if any improvement in my cognitive difficulties.

    If there is only one subject I have to think about or act on, I do fine. I even was able to make a presentation at a meeting I attended. But don't ask me a question on another subject - I am lost. Don't talk to me when I am baking or even making coffee, I am bound to mess it up, and never, ever expect me to double a recipe!!!

    Because of my inner furnace that turns on and off whenever it feels like, and because of my heart palpitations, my LLMD thinks I could also have Babisiosis and wants me to go on a 6 week course of Mepron. That is a very expensive drug, $1200.00 for 6 weeks, so I am waiting to see if our Insurance will cover it. There is a less expensive med, but it has many more side effects and much harder on the liver.

    Will I ever get 100%? I doubt it, but it is great to have a day when I don't need to lay down frequently, and great to have enjoyed the visit I just had with my beautiful grandchildren, and be able to play with them.

    So, that is my story so far.

    Happygranny (aka Jeannie)

  11. Mikie

    Mikie Moderator

    I'm glad you are so much better. Isn't Herxing fun! I've pasted an article here which explains what Rich Carson, the founder of ProHealth who has CFIDS, takes for his cognitive problems. Good luck to you.

    Love, Mikie



    Why It’s Important To Remember Phosphatidyl Serine
    by Editor
    ChronicFatigue.com

    07-10-2006

    Scores of research studies since the 1980s have pointed to an important role for the “brain cell nutrient” phosphatidyl serine (pronounced fos-fa-tie-dil see-reen) as a dietary supplement in support of brain functions such as memory and mental sharpness.
    What is phosphatidyl serine (PS)? It is made naturally by the body, is most concentrated in the brain, and works in the cell’s energy-producing mitrochondia to support cell function, the integrity of the cell membrane, and inter-cell communication. It is a basic component of cell membranes, which – in nerves and the brain especially – generate and relay electrical currents from cell to cell. This activity tends to fall off starting in middle age.

    Why supplementation? PS production in the body is complex and requires significant expenditures of energy; and though PS is found in some plant and animal foods, the amounts than can be derived from the common human diet are miniscule. When taken as a supplement, however, PS is quickly drawn up into the blood, and from there into the liver and the brain, where it is able to cross the blood-brain barrier.

    What’s the source of PS supplements? Once generally derived from the brains of cattle, for safety supplemental PS products now sold domestically are derived from soy.

    The FDA recognizes two health claims for PS supplementation, based on its own rigorous review of key clinical studies: It may reduce the risk of both cognitive dysfunction and dementia in the elderly.

    The exhaustive study of PS over the past 20 years has produced “unequivocal” evidence that “dietary supplementation with PS can alleviate, ameliorate, and sometimes reverse age-related decline of memory, learning, concentration, word skills, and mood,” writes international expert Parris M. Kidd, PhD, in an overview of the literature. * And all with an excellent safety record.

    One of the largest trials of PS supplementation, conducted in Italy, ** followed 494 elderly participants over a six-month period. The subjects in this double-blind, placebo controlled study received either 300 mg of PS or a placebo (fake dose) each day. The study concluded that the individuals who took PS performed significantly better on measures of both behavior and mental function than the placebo group.

    * “Phosphatidyl Serine and Aging,” by Parris M. Kidd, in the ImmuneSupport.com database at http://www.immunesupport.com/news/96jan004.htm; and Phosphatidylserine (PS): A Remarkable Cell Nutrient, Parris M. Kidd, Third Edition April 1998, Lucas Meyer, Inc.

    ** “Cognitive decline in the elderly: A double-blind, placebo-controlled multicenter study on efficacy of phosphatidylserine administration,” by T. Cenacchi, et al., Aging (Milano), 1993.
  12. CAAnnieB

    CAAnnieB New Member

    I am being treated for chronic Chlamydia Pneumoniae & Mycoplasma infections. My Dr. believes that these chronic bacterial infections are the cause of most Fibromyalgia/ CFS/ & MS symptoms. After 6 months of treatment with antibiotics & many supplements (I take about 80 pills every day!); I am beginning to reap the benefits...

    * more energy
    * less overall pain
    * increased ability to exercise/ do physical activities without flaring afterwards
    * healing of stomach symptoms (have been off Prevacid now for 2 weeks~ the longest time yet in years...)
    * elimination of Migraine headaches
    * sleeping more soundly

    The first 6 months have been grueling on this protocol...I reacted very strongly to the AB's and supps.(MAJOR side effects/ reactions) Over the past 3 weeks, I am beginning to see SUCH improvement in so many areas that I'm encouraged to remain on this protocol!

    Mikie hit the nail on the head with this statement:

    "I think with these illnesses, we are walking Petri dishes and until we address our chronic infections, we cannot truly heal."

    I TOTALLY AGREE with that statement! Everything else we do besides treating the underlying infections is simply "symptom masking"...Which can have value IF you are addressing the CAUSE(S) of your symptoms at the same time. In other words, it's O.K. to take something (med or supplement) to make you more comfy/ keep you awake/ etc...but those comfort measures will not HEAL your body.

    It seems to me that after hanging out here for almost 3 years; the only people who have significant improvement in their DD's are those who go after chronic infections & hormonal imbalances. The FFC's, Lyme Dr's & Dr's such as mine seem to be on the cutting edge of treatments which are bringing success and healing.

    Hugs,
    Annie

    P.S. I also should include folks like Mikie in that last statement about those who are on the cutting edge...She has done LOADS of research on her own & has developed her own individualized treatment plan which has brought her a significant amount of healing! Amazing!

    Also, if anyone is interested in Chlamydia Pn. treatment with antibiotics & supps...check out cpnhelp.org...Excellent info & support there. [This Message was Edited on 07/12/2006]
    [This Message was Edited on 07/12/2006]
  13. mrstyedawg

    mrstyedawg Member

    I have been doing research on the Marshall Protocol. It is an extensive regimin of antibiotics. You might find it interesting.

    Andrea
  14. happygranny

    happygranny Member

    You are always a great source of information.

    Thanks for the info about Phosphatidyl Serine, I will definitely give it a try.

    happygranny
  15. minimonkey

    minimonkey New Member

    I'm glad so many folks chimed in here! I am so incredibly much better after only 5 months of treatment for lyme. I was recently diagnosed with babesia, too, and the treatment for that made my horrendous, constant migraine go away almost overnight.

    I'm also on a very complete herbs/supplements regimen that I compiled from my own research and with the help of posts by wonderful folks like Mikie. I know that is a big part of why I'm getting better.

    Happygranny -- the symptoms you describe do sound a lot like babs! I think the other med you are describing (as opposed to the $$$Mepron) is probably malarone? (It is actually easier on the liver than mepron from what I've read, but also not as effective.) On the other hand, you may be talking about the quinine treatments -- I know very little about those but I do know a lot of folks have a bad time tolerating them. Another thing often used to treat babs is Artemisinin (an herb). I take that one.

    There is some evidence that ketek (also hard on the liver) may work on babs when taken in combination with mepron/artemisinin.

    I never got tested for mycoplasma or chlamydia p. because I figured that they would eventually get treated with the lyme abx protocol.

    I, too, wonder about a viral component to these illnesses.
  16. greatgran

    greatgran Member

    I just posted awhile back on the same thing..I took 2 rounds and couldn't believe how much better I felt..Even my anxiety and depressed was better...Not gone but improved..I have been off them for about a week now and am begining to get the old feelings back.. It was great while it lasted..

    On my next visit with the doc which will be Sept. I am gong to discuss this with her..

    If you are interested to read my post on this subject bring up my profile..I think I titled it CFS and antibiotics...

    Good luck,
    greatgran
  17. Mikie

    Mikie Moderator

    I really appreciate all the kind words. I know we are all different and we have to virtually tailor our treatment plans to our own needs. Still, it can be so helpful to know what is working for others. It's a place to start.

    BTW, chlamydia was mentioned. The TF C targets chlamydia. It also targets Lyme. I don't know why the TF which targets mycoplasmas is only sold to physicians on ProHealth's physician website. In any case, I think if one cannot tolerate ABX or AV's, the TF's would be a viable alternative. I also think they are excellent to take like I did once the ABX/AV/Heparin treatment is done. That is Dr. Joseph Brewer's protocol.

    As y'all know, my progress has been agonizingly slow but I'll take progress any way I can get it. I'm in a relapse because of a whole series of events, including continual outbreaks of Red Tide. Still, my relapses aren't as bad as when I was first sick. Also, I seldom need to take Klonopin during the day for symptoms like sensory overload and anxiety. That suggests progress to me too. I guess slow improvement beats just doing nothing and getting worse. It takes a huge effort in the beginning but as time goes on, the momentum does pick up. I hope this gives everyone hope.

    Love, Mikie
  18. victoria

    victoria New Member

    lots of good information here!

    (Hope you're feeling better soon Mikie! )

    V



  19. Mikie

    Mikie Moderator

    I appreciate your good wishes. From your lips to God's ear :)

    I'm just generally run down. I had the same thing happen last summer and had to miss my grandson's baptism and a family reunion. There is a reunion next month and if I can't get some energy going within the next two weeks, I'm going to miss this one too.

    I'm wondering whether this is coincidence or a pattern. I have to wonder whether the Red Tide is causing this. I am just beat and my infections keep trying to reactivate. I just Herxed from taking my ABX and my AV. I am stopping them now and will take the TF's in a day or two for a couple of days. That ought to discourage the infections for a bit but unless I get out of this slump, they will likely keep attacking.

    Oy! It's always something.

    Hope you are doing well.

    Love, Mikie
  20. deliarose

    deliarose New Member

    It seems like you're doing everything you possibly could... why do u think u are still struggling?

    Do you have other illnesses which are complicating the issue?

    Don't mean to give offence.. just curious.
    Delia