Connie

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Nov 30, 2006.

  1. Slayadragon

    Slayadragon New Member

    I don't know if you're still reading Jolie's post, and so I thought I'd start a new one for you.

    Connie,

    I'm tired, and so will just give a few brief responses. Hopefully you're still reading this post.

    1) That seems to me to be a long time even on a mild ABX. Is it working?

    2) Is the Respaire and Bacterium working on the sinus infection? Many sinus infections are caused by yeast rather than bacteria. This is something that only the better doctors that I have encountered seem to be aware of. Courses of Diflucan have been extremely helpful to me in this respect, and have shown results within a couple of days. Unfortunately, sinus infections do not go away with a few days of Diflucan.....they keep coming back. Also unfortunately, Diflucan can be hard on the liver (although I don't think this is a problem for me). Fortunately, generic Diflucan is cheap these days.

    3) Especially if the Diflucan works on sinus problems, I would suspect systemic yeast. This tends to creep up on CFS patients no matter what they do, especially if they don't follow the stringent rule of absolutely no sugar at any time no matter what. (White flour and fruit juices should be cut back.) The use of antibiotics makes the likelihood of yeast even higher. Even if she has tested negative for yeast, I would suggest following anti-yeast recommendations anyway. These include 1) LOTS of probiotics (10 billion microorganisms per day....this is about 10 regular capsules, but I got no results until I increased (upon my MD's recommendation) to this dosage, 2) anti yeast supplements (oregano oil, pau d'arco, goldenseal, citrus seed extract, etc., preferably rotated; Nystatin if you want to add it), 3) strict no sugar diet. if this results in a herx (mostly mental fogginess), you can assume there's a problem.

    4) If you're treating for yeast and herxing becomes unbearable, a colonic (colon hydrotherapy) can help. Keeping regular and drinking lots of water can also help.

    5) Maybe see if you can lower the Prozac dosage. If it's for pain, DLPA (an amino acid) may help. (This is helpful for depression.) St. johns Wort and 5 HTP can also help.

    6) Klonopin has been far, far better than Trazodone in helping me to get really restful sleep. This is a standard CFS protocol. Unlike other sleeping aids, Klonopin (and its cousin Xanax) help the body to get restful sleep.....not just sleep. I have been on it for years (2 mg per night) with no addiction. I've not heard of anyone else becoming addicted for this purpose. It's pretty common in the literature....read up on it.

    7) I agree wholeheartedly with your conclusion about Provigil. I do not believe that it is the right drug for most CFS patients, and may be harmful in the medium to long run.

    8) Going back.....if you can get any systemic yeast under control, any sinus yeast infections will eventually fade on their own. (This does not mean that Diflucan is not appropriate for a short-term treatment.) Vaginal infections MAY eventually also heal, although this takes much more time.

    8) That sounds like an extremely aggressive Acyclovir initial dosage to me. People have crashed big-time on doses like that, and given up on the drug entirely. This is especially the case since acyclovir often has side effects, but much more because of the possibility of a herx. I would advise starting very small and then working your way up, based on the experiences I've read on this board. Considering starting low and then working up seems to me very, very important if you go this route.

    9) This seems to me like a lot of drugs for a young person to try. Taking her out of school is for a while is a good first step. I'm still inclined to encourage her to rest as much as possible and to let her body heal naturally to the extent possible. I've only resorted to the AV's after 11 years with this illness, and because I am convinced that nothing else will get me past a 6/7. I've tried every other remedy I could find before resorting to them, though. In your daughter's case, there's at least some chance she will recover (REALLY recover, not just go into remission) if she takes the time to rest now. I'm afraid that too many drugs will stress her system so much that this natural process won't be allowed to happen. Explore alternative remedies to every extent that you can, I would recommend.

    11) My conclusion is that with the AV's, having good liver support is essential. I would see if you can find one that does not prompt an allergic reaction before you start the AV, if indeed you do use the AV at this time. Options are Immune Pro Rx (i've had great luck with this, but others on the board can't stand it at all), milk thistle (silymarin) and the Chinese herb bupleurum.

    12) If you do the AV, I would suggest your reading my posts on Famvir to see what to expect. (Jolie's on Valtrex may be less useful because---apparently due to going on too many drugs at once---she flamed out very quickly.)

    13) You mention an "underlying viral infection" as if it were something that might be fixed with a short course of av's. It seems increasingly clear that CFS sufferers have a problem with their immune system, and that viruses of all sorts will continue to attack even after the virus that you think is the problem is eradicated. This became clear to me when I did a test on my immune system by ImmunoSciences. If you would, please look it up in the content section of the board archives. If you can't find it, I will help you. Hopefully your doctor can order it. I found it the most informative test I've ever done in allowing me to understand my illness. It's less than $400 out of pocket, and most insurance seems to pay for it.

    14) If your daughter does well over Christmas break, I still would suggest giving her a prolonged break from school in order to continue her recovery. Studying at home probably is okay, as long as she does so within her limits. i've stated my thoughts on this before and don't need to elaborate further.

    15) Congratulations on finding a "country doc" that will allow you to try different things. All CFS patients should be so lucky! I'm from Indiana myself, and I think the docs there are, on the whole, really great there. _Far_ better than the ones I've found in Chicago or heard about on this board, anyway.

    Good luck! Keep us informed.
  2. connieaag

    connieaag New Member

    1) That seems to me to be a long time even on a mild ABX. Is it working?

    ----She was on Valtrex in March for 10 days 1500mg for mono and had a good response.
    Started it on and off during the summer when she would get the viral sores on her throat and it seemed to keep her from flaring. Every time she went off, she flared w/in a few days.
    Now she started Acyclovir Tuesday and the dosage is higher because you need more of that drug than Valtrex. It is for 10 days and then see what happens.

    OPPS -- I just reread this and saw you put ABX! Yes, the Bactrim helps, see below. And I think the Minocin helps (and she has no acne as a good side effect) so we're staying on it. I think she is fine except for Oct-Mar thing below. Maybe we have found an answer in treating the SAD -- see below.

    2) Is the Respaire and Bacterium working on the sinus infection? Many sinus infections are caused by yeast rather than bacteria. This is something that only the better doctors that I have encountered seem to be aware of. Courses of Diflucan have been extremely helpful to me in this respect, and have shown results within a couple of days. Unfortunately, sinus infections do not go away with a few days of Diflucan.....they keep coming back. Also unfortunately, Diflucan can be hard on the liver (although I don't think this is a problem for me). Fortunately, generic Diflucan is cheap these days.

    ----She has always had chronic sinusitis. again, when she goes off of the bactrim, she gets a sinus infection. I know some have comented about long term use, but all of the docs have told us it is a safe drug for long term use. Currently she takes in every other day. Her SS teacher who has had a liver transplant, takes it every other day for the same treatment, so I honestly feel it's pretty safe!

    The respaire is an older drug as well. Basically a Musinex type thinner to keep things from backing up in her sinuses.

    3) Especially if the Diflucan works on sinus problems, I would suspect systemic yeast. This tends to creep up on CFS patients no matter what they do, especially if they don't follow the stringent rule of absolutely no sugar at any time no matter what. (White flour and fruit juices should be cut back.) The use of antibiotics makes the likelihood of yeast even higher. Even if she has tested negative for yeast, I would suggest following anti-yeast recommendations anyway. These include 1) LOTS of probiotics (10 billion microorganisms per day....this is about 10 regular capsules, but I got no results until I increased (upon my MD's recommendation) to this dosage, 2) anti yeast supplements (oregano oil, pau d'arco, goldenseal, citrus seed extract, etc., preferably rotated; Nystatin if you want to add it), 3) strict no sugar diet. if this results in a herx (mostly mental fogginess), you can assume there's a problem.


    ----She has always taken probiotics since she started the roadback treatment with Minocycline in May 2005. No problems with yeast or sinusitis for over a year with this treatment, so I don't want to change it! That's one thing under control.

    4) If you're treating for yeast and herxing becomes unbearable, a colonic (colon hydrotherapy) can help. Keeping regular and drinking lots of water can also help.

    -----She drinks a lot of powerade and water. No soft drinks to speak of. Lots of healthy foods.

    5) Maybe see if you can lower the Prozac dosage. If it's for pain, DLPA (an amino acid) may help. (This is helpful for depression.) St. johns Wort and 5 HTP can also help.

    -----Actually she met with her psychiatrist yesterday. She believes she has SAD because this is the third season in a row (one of the daignostic criteria) where she has felt great all summer, and then gone downhill rapidly in late October thru March. In the past, B-4 we were seeing a psych, her docs just tried a new AD when this came on. The psych we see works at Alpine Clinic in Lafayette, and they have done TONS of FM studies with Lily regardng Cymbalta. I feel they are experts on that drug. Kat was on it for about 3 months, and was highly suisidal. Just a mess! She immediately took her off as it was too much drug for an adolesant. She went back to Prozac (proven for kids) and it made a world of difference. She has been on 20 mg and she uped it yesterday to 30. She feels now that we have the right AD, increasing the dosage to coincide with the SAD should help, and help her overall. She has ALWAYS been correct with Kat, and I have done a 360 on the importance of a psychiatrist prescribing ones AD.

    6) Klonopin has been far, far better than Trazodone in helping me to get really restful sleep. This is a standard CFS protocol. Unlike other sleeping aids, Klonopin (and its cousin Xanax) help the body to get restful sleep.....not just sleep. I have been on it for years (2 mg per night) with no addiction. I've not heard of anyone else becoming addicted for this purpose. It's pretty common in the literature....read up on it.

    ----She's doing well on Trazadone at 75mg. Pain is her big complaint. Acupuncture is working well along with Vicodn as needed, heating pads, Biofreeze, massage, Graston, etc. She starts PT Monday.

    7) I agree wholeheartedly with your conclusion about Provigil. I do not believe that it is the right drug for most CFS patients, and may be harmful in the medium to long run.

    ----She's off of it for now!

    8) Going back.....if you can get any systemic yeast under control, any sinus yeast infections will eventually fade on their own. (This does not mean that Diflucan is not appropriate for a short-term treatment.) Vaginal infections MAY eventually also heal, although this takes much more time.

    -----Really not an issue right now.

    8) That sounds like an extremely aggressive Acyclovir initial dosage to me. People have crashed big-time on doses like that, and given up on the drug entirely. This is especially the case since acyclovir often has side effects, but much more because of the possibility of a herx. I would advise starting very small and then working your way up, based on the experiences I've read on this board. Considering starting low and then working up seems to me very, very important if you go this route.

    -----She took 4000mg yesterday, 2400mg Wed with no problems. It was throughout the day obviously. She felt GREAT yesterday except for mild pain in her knees. The doc X-rayed them just to make sure nothing else was going on. The growth plates have almost closed, less than an inch to grow (she's 5'10" now!) When she stops, I am hopeful her hormones will balance out a bit. She has had all the hormone panals run, and is low in testosterone and melatonin. I read where the melatonin and SAD have a link.

    9) This seems to me like a lot of drugs for a young person to try. Taking her out of school is for a while is a good first step. I'm still inclined to encourage her to rest as much as possible and to let her body heal naturally to the extent possible. I've only resorted to the AV's after 11 years with this illness, and because I am convinced that nothing else will get me past a 6/7. I've tried every other remedy I could find before resorting to them, though. In your daughter's case, there's at least some chance she will recover (REALLY recover, not just go into remission) if she takes the time to rest now. I'm afraid that too many drugs will stress her system so much that this natural process won't be allowed to happen. Explore alternative remedies to every extent that you can, I would recommend.

    --------Yes, we are working on RECOVERY. Riley and Alpine both feel hopeful since she is young. No one knows the RIGHT combination, but when things work, we tend to stick with them. Overall, we feel pretty good about things right now, but that could chnage tomorrow!

    11) My conclusion is that with the AV's, having good liver support is essential. I would see if you can find one that does not prompt an allergic reaction before you start the AV, if indeed you do use the AV at this time. Options are Immune Pro Rx (i've had great luck with this, but others on the board can't stand it at all), milk thistle (silymarin) and the Chinese herb bupleurum.

    -------She has liver panal run every 3 months. It is still fine.

    12) If you do the AV, I would suggest your reading my posts on Famvir to see what to expect. (Jolie's on Valtrex may be less useful because---apparently due to going on too many drugs at once---she flamed out very quickly.)

    -----May switch around as needed, if needed. Hopefully we can get it in remission and then just maintain.

    13) You mention an "underlying viral infection" as if it were something that might be fixed with a short course of av's. It seems increasingly clear that CFS sufferers have a problem with their immune system, and that viruses of all sorts will continue to attack even after the virus that you think is the problem is eradicated. This became clear to me when I did a test on my immune system by ImmunoSciences. If you would, please look it up in the content section of the board archives. If you can't find it, I will help you. Hopefully your doctor can order it. I found it the most informative test I've ever done in allowing me to understand my illness. It's less than $400 out of pocket, and most insurance seems to pay for it.

    14) If your daughter does well over Christmas break, I still would suggest giving her a prolonged break from school in order to continue her recovery. Studying at home probably is okay, as long as she does so within her limits. i've stated my thoughts on this before and don't need to elaborate further.

    ----That's what we are thinking. The tutor's sister has FM -- talk about an answered prayer. She has homeschooled 2 kids, and homebound program (like we are doing) for one with lymphoma (she's now an adult). She will start seeing her psychologist during this time so we can keep on top of social issues in doing this homebound program.

    15) Congratulations on finding a "country doc" that will allow you to try different things. All CFS patients should be so lucky! I'm from Indiana myself, and I think the docs there are, on the whole, really great there. _Far_ better than the ones I've found in Chicago or heard about on this board, anyway.

    --------He is wonderful! And so open to trying things. His experience and knowledge are invaluable.

    Thanks again for the post and ideas. Hopefully the posts will help others as well in their search for better health.

    Take Care! Connie
    [This Message was Edited on 12/01/2006]
    [This Message was Edited on 12/01/2006]
    [This Message was Edited on 12/01/2006]
    [This Message was Edited on 12/01/2006]
    [This Message was Edited on 12/01/2006]
  3. connieaag

    connieaag New Member

    Yes, of our close family friends - and actually our children's guardians in our will -- he is an ENT and his wife a stay-at-home ex nurse! So that is one reason I don't want to change anything sinus-wise either. He was a 'doubter' when she was first dx'd, but after three years of seeing her first hand both professionally and personally in dealing with this, he knows it is real and very good about forwarding info to us as well. He has a treatment in place that is working.

    Our other close friends, and our God daughter's parents, is an OB/GYN and his wife too is a stay-at-home now nurse. He too sends lots of info our way and we run a lot by both of these guys as well as Kathyrn's 'real' doc that I have spoken about who is a client of my husbands! We are both commodity brokers and work together in our home office.

    Her psychologist and psychiatrist are great as well, so we feel blessed that things in that arena are working and working together well. Her chiro is also a family friend. It doesn't hurt that we 'ran' with this group long before we FM/CFS days, so they know what we have gone thru and claim themselves that they are much better docs in reagrd to FM/CFS after seeing us and Kathryn go through it -- from "what is wrong with this kid, to kids don't get FM/CFS, to yes this is real and we want to help.

    Thanks for your thoughts! Connie
  4. Slayadragon

    Slayadragon New Member

    Hi Connie,

    I originally was concerned about the acyclovir in high dosages because of one flameout that I observed a short time ago on the board. This was on acyclovir by itself (rather than in combination with other drugs as the FFC's have prescribed) and it thus seems to me important for you to be aware of it. This is especially the case since the person felt good the first few days and then had a major crash. I am putting her posts below.

    I don't know much about fibro and thus my own experiences (all CFS with no fibro) may not be of use to you. i do know that personally, after 11 years of living with CFS, hundreds of trial-and-error approaches, and thousands of hours of study, I am sure that my body almost never responds similarly to the way normal people's do to any almost any kind of treatment. This seems to be the case with other CFS sufferers as well.

    That's why the standard medical community (even the very best doctors I've been able to find) have been of almost no use to me whatsoever, even in treating the most minor of my problems. That's why I tend to question anything that traditional doctors say (although I certainly always investigate and often try out their suggestions). As another example, note that Jolie got no help whatsoever from traditional medicine, even though she obviously had access to the very best care available.

    I can only tell you my experiences, along with those that I've read after intensive research into this disease over a long period of time. As I said before, I am not familiar at all with fibro, and so especially if it's a separate disease (and I think it could be), my experiences may have no validity with regard to your situation at all.

    Nonetheless, here are couple of comments regarding my own experiences and knowledge (in addition to the acyclovir stuff). I don't expect you to change your strategy in reaction to them now or to further justify your current plans to me. I just think that you should have my experiences and understanding of CFS available in the event that what you're doing now turns out to be not totally optimal. It's my experience that the more information I can get from other people who have studied and experimented with my disease (which, again, may be totally different from FM), the better able I am to make decisions if the things I'm doing don't work out.

    1) Candida has a habit of sneaking up on CFS sufferers, especially if they consume any sugar whatsoever. It's my impression that sports drinks have a whole lot of sugar in them, but I don't consume them myself and so am not sure. Candida lab tests are not always accurate with regard to spotting candida problems. (This may be noteworth in the future even if it candida isn't a problem now.)

    2) Liver tests are designed to measure severe liver problems for ordinary people. CFS sufferers (especially those on drugs) may need super-functioning livers in order to deal with the problems associated with CFS. My liver tests have always been terrific, and yet I am sure that I have benefited tremendously from liver support.

    3) Prudent use of various drugs certainly seems to have potential for increasing feelings of health amongst those of us who seem to have CFS "for good," although this is still an untested area. Whether such drugs are conducive to recovery, I do not know. Since such drugs were of limited availability (or not available at all) in the past, I would imagine that those young people who did recover used few of them. This does not mean that drugs will make the possibility of recovery lower; it only means that this is very uncharted territory. Perhaps you have more knowledge than I from your research, however.

    4) I personally have had far more success with SAD (which used to be a real problem for me) with St. Johns Wort than with Prozac. I took Prozac for a long time, too. I have heard others make similar reports, even though St. Johns Wort has not undergone the expensive testing that Prozac has since it is not a patented product.

    5) My experience with every drug I have taken is that it has stressed my system. A very few of them have been of use with regard to bringing me to a higher level of functioning, and I have continued to use them. If I were hoping for recovery, though, I would be hesitant about doing anything to stress my system, even if it seemed to be helping in the short-run. Instead I would be inclined to get as much rest as I possibly could, to let my body do its own repair, unless I could find literature that suggested that a different approach would work as well or better.

    6) Just because young people in general respond a certain way to a particular drug (like an antiviral) does not mean that young people with CFS will respond the same way. It seems possible that their experiences will be the same as adults'---far stronger than what is expected based on normal dosages. For example, adult CFS sufferers do not seem to be able to tolerate the same amount of antivirals than do otherwise healthy people who are using them to address a single problem (like Herpes). I have learned by experience, observation, and comments from my doctor (who has used AVs extensively in at least 100 cases) that caution---especially with AVs and prescription medications but also with other treatments---is a good watchword with this disease.

    **

    As I said, I have no experience with FM, and so if that disease is much different than CFS, then my research and experience is likely of no value at all.

    And as I said, this is all uncharted territory. I have no idea who is right and who is wrong. I just think that I would be negligent in my responsibility if I did not share all of the information I had with you, so that you can make the choices that seem most reasonable to you.

    I do not expect or particularly want a response to this note. I am just providing this information to you because I feel it is my moral duty to do so.

    Good luck!!!!

    Best, Lisa

    ***

    MESSAGES FROM THE BOARD:


    tlayne 9/30/06

    Hi again Lisapetrison
    09/30/06 02:37 PM

    I am on Acyclovir 800mg. For 5 days I am taking 800mg 5 times a day, Then I start taking 400mg two times a day. My PAC started me on this at my request. Another person on this board has been on Valtrex, and she is doing wonderfully! Valtrex is very expensive and I felt could not afford this drug, as I do not have insurance at this time. Acyclovir is much cheaper, much. The Pharmacist told me that it was just as good.

    I was prepared to feel sicker for a while, but today I have more energy than I have had in months. I am giving more credit to the new sleep aide that I also started last night. Only time will tell, but am I hopeing for the "cure". At this point and time I am happy with the improvment of energy that I have today. But at the same time I don't want to get my hopes up too far.

    Please let me know how your MD appt. goes for you. I have to admitt that I am lost on the google and switch thing. I tried and tried, but I am not getting anywhere. It is good talking to you. Please keep in touch. When I have been on this antiviral for a month or so I am going to try the hormones. I would want to try them slowly, and most likely one at a time. Hugs, Tam



    **

    10/5/06 tlayne

    Hi guys
    10/05/06 05:30 PM

    I just wanted to pop in here and say, Please read all the side effects or s/s that you should report to the MD for these meds.

    I did very well for the first 5 days, and then the old s/s came back with a vengence. I looked up the side effects and some of the ones listed to contact your MD immediantly, I was having.

    I am very sick right now, and my bubble is burst. I really thought Acyclovir was going to be the cure. At first I thought this was a die off reaction and I guess it could be, but I am getting sicker by the minute. The pale skin and the decreased urination, even tho I am drinking a ton of water, was the reason why I will not take my next dose.

    Lisa I hope the antiviral works for you. I know that fightforacure is doing wonderful on Valtrex. Tam


    **

    10/6/006 tlayne

    right now I wish....
    10/06/06 09:01 PM

    that I wouldn't have gotten my hopes up. I took a BIG fall. I have done this before where I was on "something" atibiotics, nutritional supplements, and other medications that seemed to work, and then they just quit. Has anyone else done this?

    I know I thought that I was just herxing, but I was sooooo sick that I couldn't continue to take them. I was so nauseated (continuously 24 hrs a day) upperback pain (I am thinking pancreas), sweating profusly, pale (very, at first I thought I was loosing the brown pigmentation that I have developed over the last few years), sore throat, decreased urination (even tho i was drinking almost 2 liters a day), and increased weakness, was not sleeping.

    It really is my own fault. Because I work daily with my PAC, due to my nursing job at an assisted living facility, and she trusted me. I should have looked into the s/e and others drugs that I have had this same reation with that was listed under the precautions.

    I am just so discouraged. I am so sick that I really feel that I am dying (even before the antiviral). I am desperate, I will try anything. For at least 4 days I thought I had my life back.

    We are all in the same boat. Please just be careful. I am hoping that nobody else has these results. Just know the side effects, and report them to your MD promptly if you have them.

    I do have a plan of attack. I am going to get my hormones checked (and have my hormone supplement compounded), thyroid, pancreatic enzymes, A1C (which shows what your blood sugar has averaged for a longer duration), trying a mostly raw vegtable and fruit diet (this could be a challenge in Idaho during the winter). Hmmmmm, what else? Any suggestions? I want to just give up, but I can't. Right? Hugs, Tam
  5. connieaag

    connieaag New Member

    I appreciate all of your info, Lisa.