TO LISAPETRISON RE: DR. GUYER

Discussion in 'Fibromyalgia Main Forum' started by LongStruggle, Feb 7, 2007.

  1. LongStruggle

    LongStruggle Guest

    Can you tell me more about Dr. Guyer? Is his main emphasis checking for viral infection or is he looking at the total picture of CFS? Is he up on the latest research? Is he expensive? How often do you see him? Does he do a lot of testing? Does he follow a certain protocol? Does he help people get disability?
  2. LongStruggle

    LongStruggle Guest

  3. Slayadragon

    Slayadragon New Member

    1) His main emphasis is on looking at the specific problems underlying your CFS. He does not believe that all CFS patients can or should be treated the same way, and so chooses from an extremely wide range of treatments to address your specific problems.

    Antivirals are one component of that, and are used on patients that seem likely to respond. His goal is to get patients in as good of shape as possible before that, so that their bodies are stronger.

    He think that patients who are already as strong as possible will be better able to tolerate the AV, and (more importantly) will be more able to have their own natural immune systems kick in after the drug is used for a while.

    He has been using antivirals (mostly Famvir) for several years and getting good success on just that. (Famvir does not kill viruses as well as Valcyte, but for some patients it can kill enough for the natural immune system to start to kill more and then go into an upward spiral to become fully functioning again.) As of the beginning of January, he had used Valcyte on 35 patients. More, like me, are scheduled to begin in the near future.

    2) He spends the majority of time finding out about what other doctors as well as researchers are doing. This includes doctors in Europe as well as America. (I don't think he's been to Japan yet, but I wouldn't be surprised if he schedules a trip sometime soon.) I am quite confident that there is nothing in the field of CFS of which he is unaware (unless some doctor or researcher is purposely keeping it under wraps).

    3) I believe his initial consultation fee (one hour) is $1,000. Follow-up appointments (30 minutes) are $350. Telephone appointments are readily available but significantly more expensive. Medicare is not accepted under any circumstances.

    4) He would like to see patients every two months. After we hit a wall with other treatments and stopped improving, I sometimes would go six months between follow-up appointments. That was my choice, though.

    5) Yes, he loves to do tests. He usually tries to get an idea about whether my insurance will pay before doing them though.

    6) The protocol is totally customized for every patient.

    7) I don't know about helping patients to get disability. He's very good at helping people to get reimbursement from insurance, though.


    I will put a couple of previous posts about my experiences with him below.

    Best, Lisa
  4. Slayadragon

    Slayadragon New Member

    This is a post I wrote earlier this week to Gretchen.

    *

    When I went to Indianapolis a month ago, I saw my doctor and also attended the wedding who has been a good friend since high school. I've known the rest of my friend's family since high school as well.

    The mother of my friend is the person who recommended Dr. Guyer to me nine years ago. I hadn't seen her in about five years. My friend had told me that she was doing well, but I had no idea _how_ well until we talked at the wedding and then had coffee a couple of days later.

    My friend's mom got exremely serious CFS in about 1995. It followed a major car crash in which she sustained a back injury, and then a "killer flu" of the kind we all know about.

    She was in her mid-50's and had to quit her job as an accountant. She said that for a while, she couldn't get up for more than 30 seconds.

    She met Dr. Guyer soon after she got ill, when he was just starting his practice. She has seen him every two months ever since, she said.

    The symptoms she had were classic CFS. Yeast and parasites. Food allergies. Endocrine problems. Muscle pain. Reluctance to do very much because of fear of crashing. Debilitating fatigue. These were all things we discussed in-depth at the time.

    I didn't discuss cognitive problems at the time. She talked relatively slowly and seemed to have trouble expressing her thoughts, though.

    She was not a recovery/relapse patient. Her illness was constant, except insofar as she used various treatments (of the sort listed in Teitelbaum's book) to get permanent improvement.

    Over time, she tried different things and got a lot better, but still wasn't wholly well. The last time I saw her was about five years ago. She was at home most of the time. She went out (to church, to go shopping) and occasionally would drive to see my friend (who was living in Virginia at the time). Like me, she spent a lot of time resting to make up for this. Based on her description, I'd say she was maybe 50-60%. She didn't have a normal life, but she had made a lot of improvement.

    I didn't know until I saw her at the wedding that she had tried Famvir. She went on it four years ago and stayed on it for around 18 months. She said that she got somewhat better during this time, but that she was also doing other things and wasn't sure if the Famvir was responsible for her improvement. She didn't have any herxing symptoms.

    However, soon after that (6 months to a year) she got _wholly_ well. She is 67 and now is at a 10+++. (The healthiest and most glowing 67-year-old I know, actually. The more I talked with her, the more I couldn't believe she had changed.

    She is unhappy that she still has to take thyroid and adrenal supplements to feel her best. She thinks that if she were _truly_ well, she wouldn't need anything. But how many people who are almost 70 are in totally perfect health (meaning easily able to do 12 hours of busy activities every day) and with no drugs at all?

    Dr. Guyer said he believes the adrenal/thyroid problems are viral, and just prescribed garlic for her. I believe that other than that and the adrenal/thyroid medicines, she just takes regular vitamins and minerals.

    She says she also suffers some residual shoulder pain, but says she believes it's from the car accident. Other than that, she says she has no health problems at all.

    She does not give Famvir the credit for making her well, and I agree that it is extremely unlikely that it would have helped that much if she hadn't done all kinds of other stuff to address her health problems. She is grateful for having recovered, but she doesn't seem to me to appreciate just how remarkable her recovery is. She wasn't bragging to me about her life; she was just telling what happened.

    **

    This is consistent with everything that Dr. Guyer told me the day before the wedding about the patients of his who had gotten fully well. (He has no idea that I know this particular woman.)

    He told me that a lot of his patients have gotten totally well using a _combination_ of antiviral drugs and other treatments. He stressed the following points:

    * The AV's by themselves do not work to get people totally well. You have to build up the whole system first and then use the AV's. That way, the immune system can start functioning on its own soon after the AV's have killed off many of the viruses.

    * People do not get to full functioning while they're still on the AV. It takes a while after that for their own immune systems to take care of all the stuff that's causing problems.

    * Thus far, he has had good results using Famvir. He thinks of it as "Valcyte Lite." It does the same things that Valcyte does, but in a gentler and slower way. People need to be on it for longer periods of time.

    * He's only been using Valcyte since fall, and so the people who have used it have not had time to get fully well yet. Their results thus far seem consistent with the ones he's seen with Famvir. Especially for patients with really major viral problems, it gives quicker results.

    * He tries to minimize the use of Valcyte though. He doesn't want to use anything too toxic (including high doses of drugs like Famvir), since that weakens the body overall and makes it less likely that the natural immune system will have the strength to start working on its own.

    * A lot of patients get fully well after time on the AV's and then more time recovering. They feel well. Their test measures (NK Cell activity, interferon alpha, Rnase-L, apoptosis) go back to normal.

    **

    I have developed a good deal of trust in my doctor over the years. He expressed enthusiasm for certain treatments from time to time, but he never told me before that substantial numbers of patients like me were getting truly well, and never stated that he thought it would happen to me. This time he seemed quite convinced.

    (I have worked my way up to 60-70% over the years with a great variety of treatments, which makes me think that my core strength is pretty high. Being functional at all with the number of viruses I seem to have--based on my test results and Famvir herxing--is upon reflection quite an achievement.)

    I still would be pretty dubious (although still plugging along) that I was going to get really well, if I hadn't had the first-hand experience of seeing and talking with my friend's mother.

    I knew her before she got sick, after she got sick, and now after she's obviously gotten well. She seems in better health now than I've ever seen her, even though she was fully functional before the car accident and "flu."

    Obviously, this is just one patient. However, the fact that it's consistent with the experience that Dr. Guyer said he has seen in many patients makes me hopeful that I will get that kind of recovery as well.

    Which doesn't mean on certain days that I don't feel like giving up, of course. At least for some of us, they can be a hard road.

    Anyway, I will keep reporting back, and so you can see what happens to me.

    Best, Lisa
  5. Slayadragon

    Slayadragon New Member

    This is the summary I wrote after my most recent appointment in early January.

    My understanding of some of these ImmunoSciences test measures has changed a bit since then, so please do not rely upon my descriptions.

    I don't know for sure if this is going to work, but it seems like the best shot I've seen so far. And my doc says he has a lot of case studies to back it up. I'd like comments, if you have them.

    As I mentioned, I visited my doctor today. We spent an hour talking in theoretical terms about his strategy for making patients well using AV’s and other tools available. His approach is substantially different from any other that either he or I have encountered, and yet exactly like what (after some immunology study and a lot reflection) came up on my own. I was hoping that he was going that direction and that he has had success. Both of these things turn out to be true.

    We talked mostly about AV’s, since this is the main thrust of my new treatment. He has had 135 patients on Famvir and 35 on Valcyte, and so he has a good observation base by now.

    Here are the basic points that we discussed:

    1. His goal is to get the patient’s own immune systems to be able to (for the most part) be able to resume taking care of pathogens on its own.

    He believes that it is far easier for the CFS patient’s body to keep pathogens (and especially stealth viruses like members of the herpes family---CMV, EBV, HHV-6) out to begin with than to remove them.

    (See my previous post called something like "AV’s, Herpes Viruses and the Immune System" if you want the theory.)

    Therefore, the goal is to use the drugs to get those pathogens out of the body in sufficient quantities for them not to burden the immune system. Without that extra weight, the immune system can handle other things on its own (including other viruses that might be hiding as well as bacteria/mycoplasma).

    This only will happen if the patient’s body is already in as good of shape as possible (on all the things in Teitelbaum’s book, for example) before starting. Things like getting rid of yeast and food allergies, as well as strengthening adrenals, are crucial.

    If these things are not done before the AV is taken, the AV will likely not be tolerated very well and have to be abandoned before it has done as much as it can.

    Even more importantly, if the body is not strong in other ways before starting on the AV, it will be unable to fight off remaining pathogens even if a good number of viruses are killed off. If the immune system is unable to kick in itself, the results of the drug will be only temporary.

    His experience is that if you give AV’s to patients who are already in good shape, their immune test numbers (from the ImmunoSciences test that I keep bringing up) go totally back to normal.

    NK Cell activity increases, apparently because HHV-6 (which is killed by herpes drugs) is one of the factors that lowers it.

    Rnase-L is a measure of the cells taking last-ditch efforts (not very effective and highly tiring ones) to save the body from viruses that the NK Cells are supposed to be killing off. Rnase actually makes the cells with viruses in them commit suicide, which as one would expect would be exhausting.

    Apoptosis is cell death. This is caused when viruses use the energy of the cells to replicate, and also when the cells to commit suicide.

    Alpha interferon is a measure of the body giving a warning cry to the rest of the immune system that it needs to go on attack because lots of viruses (and maybe other invaders) are present. The fact that my level is 40x normal means that i apparently have a lot of pathogens present.

    If you decrease the viral load with herpes AV’s, all these measures go back to normal. This only happens when you start with a body that is as strong as possible.

    It is important to give the body as much energy as possible during the dying-off phase and then as the immune system rebuilds itself. Rest is good. Keeping adrenals strong is essential. Liver is less important. Continuing all protocols to keep the body in good shape (e.g. with regard to yeast, sleep, food allergies) is extremely important.

    2. This approach is totally different than those done by Drs. Montoya, Lerner and Peterson. It is pretty dissimilar to those of the FFC’s as well.

    The first group of doctors use AV’s without doing anything to build patients’ strength. Moreoever, they have thus far experimented on very sick patients (since those people have "more to gain"). And finally, they have for the most part thrown huge quantities of drugs at them during the first few weeks of the protocol, lowering it a bit after that.

    As one would expect (based on the discussion above and observations on this baord), those patients have had tremendously difficult times coping. Drop-out rates have been high.

    (Note: Dr. Guyer says he has had only two patients drop out thus far. One was because of headaches alone. Since the patient had headaches before starting the drug, it was unclear whether the somewhat worse headaches were being caused by the drug or by something else.)

    Moreover, this protocol is not designed to get patients to a point where their immune systems are functioning on their own, because their bodies are not healthy enough in general to be able to do this.

    These doctors’ explanations for why they use such high amounts of the drug in the first few weeks is because they do not want to have resistant strains develop. Dr. Guyer’s approach is that if the patient’s body is in good shape before going on the drug and isn’t destroyed by the drug, it will build gradually to be able to take care of any resistant strains (as well as other pathogens---including mystery viruses, bacteria and mycoplasma) on its own.

    The FFC’s aggressive approach is the same used by Montoya, Lerner and Petersen, he said. This is unsurprising since (to his knowledge) no one else has taken this long-term "restore the immune system" approach to the problem. He did comment on the FFC’s "cookie-cutter medicine," suggesting that even though they tried to build up patients’ bodies a little bit before starting on the antivirals, they did not do so in an individual enough way. (He did not seem to know a whole lot about those centers and did not comment further. Since they don’t have info that he doesn’t already know, I don’t think he’s paying much attention to them.)

    3. Dr. Guyer recommends just a few things to make AV use a success.

    • Focus on building up the body in as many other ways as possible before you start.
    • Do not start at a time when you have been under stress. Start at a time when you are feeling pretty good already.
    • Rest as much as possible while on the drug, so that you do not wear yourself out and prevent your own immune system from working.
    • Support your adrenal glands as much as possible. Support measures include DHEA, cortisol, adrenal extracts, licorice and ginseng.
    • As much vitamin C as can be tolerated without diarrhea should be taken, to help kill viruses and support the body. (I told him I took 6,000 mg of EmergenC. He told me that I should be able to go much higher, which I will do.) This helps to kill viruses as well as to support the body (and especially the adrenals) during this difficult time.
    • Supporting the liver is good too, but not nearly as crucial as the other measures.


    4. Dr. Guyer uses both Famvir and Valcyte on patients who do not respond fully to Famvir alone.

    Famvir and Valcyte are basically the same drug except that Valcyte is much more potent (in both efficacy and toxicity). They both kill a broad spectrum of viruses, including (he says) HHV-6.

    His usual strategy is to kill off as much as possible with the Famvir. 500 mg of Famvir is a tolerable dose (remember this is equal to about 1300 mg of Valtrex) and so he rarely goes higher.

    If patients stop having improvements with the Famvir and are not better, he moves to Valcyte. Using Valcyte for only part of the treatment time reduces the likelihood that toxicity will be a problem.

    The main conceivable risk with regard to Famvir and Valcyte (other than die-off) is bone marrow dysfunction. He has not seen this in any of his patients. He has not heard of it in any of Petersen’s, Montoya’s or Lerner’s patients either.


    5. At some point, additional to help the AV do its job better may be used. These products do not do well on their own, but can work in combination with AV’s:

    • Transfer factor
    • Natokinnaise
    • Nexavir (aka super-Kutapressin) (Apparently there is a compounded transdermal Nexavir made by one pharmacy that I could use, since my rubber allergy prohibits me from pushing needles through rubber stoppers.)

    6. The antiviral is taken until it seems to have done all that it can.

    He believes in my case, this will be about six months.

    After that, it may be pulsed on occasion, just to give the system a little bit of extra help. For instance, a couple of days a week, or one week a month.


    7. He strongly believes that more die-off means that the drug is "doing something" and that good results should be expected (provided that the body is in good shape to begin with).

    Apparently my immune system results were substantially worse than all but a few of the patients he’s tested (and of course he tests only very sick patients). He was unsurprised (and also encouraged) that my die-off was strong, and glad that I handled it well.

    Despite the severity of my immune system dysfunction, he seems fully confident that it will go back to normal.


    8. A wide variety of improvements are seen after the immune system gets back in order.

    The die-off symptoms that Jolie and I got (cognitive, emotional and physical) suggest that viruses that were being killed off were hidden in the parts of the body that control these factors.

    Once the viruses are removed, improvements in those areas should be noted. Emotional improvements are very common. Brain fog cognitive functioning lifts, as does various physical measures. Apparently the viruses being killed by the drug are doing this damage.

    Moreover, once the immune system kicks back in, other systems of the body should improve soon.

    We talked about Cheney’s heart theory, for instance. He said that he thought that Cheney was right about the heart being a problem, but that this was caused by a virus. While that virus probably was not susceptible to the AV, once the immune system kicks in working again itself, it is able to kill the heart virus itself. He thinks that hawthorne may be somewhat helpful, but that it doesn’t solve the problem.

    I mentioned that pretty much every health problem is caused by viruses, including obesity. He then mentioned that many patients on the drug had found they lost weight without trying, even though they weren’t exercising or changing their eating habits. His belief is that the body was able to eliminate the obesity virus.

    9. Once the immune system repairs itself, keeping it from going out of whack again is essential.

    Apparently the reason that it goes out of whack to begin with is because a very high degree of stress allows a virus (perhaps HHV-6 or similar) to sneak in. When this happens in people with a propensity for CFS, HHV-6 often wins the battle and disables the NK Cells. Then other viruses that hide can replicate at will, followed by other viruses that the immune system can’t keep up with.

    We didn’t discuss stressors in particular. At this point in the conversation I just said, "So I guess I should make sure not to have any more head injuries." He agreed that would be a very good idea.

    My guess would be that other stressors would be things like any sort of injuries, operations, childbirth, high-stress occupations, emotional stress, manic-depression (to the extent that it causes uncontrolled mood swings), illness, etc.

    If the immune system is functioning well, the body should be able to take some of these stresses. However, being cautious to avoid unnecessary stress and to take very good care of ourselves when we are stressed is crucial to remaining well. Continuing to work when we are dead with the flu would be a very bad idea, for example. So would the sort of life I used to have (working 100 hours a week teaching classes and doing heavy academic lifting).

    It is possible that after the antivirals are used for a while, resistant strains will indeed develop. A functioning immune system will be able to knock them out before they get a strong foothold. If the immune system becomes dysfunctional a second time, it may be more difficult to eradicate the problem unless new drugs killing resistant strains become available.

    Fortunately, CFS patients have learned to adapt to a slower lifestyle. Retaining that ability to slow down is crucial if we want to stay well for the rest of our lives.

    The one product that he really seemed to like for times of stress is made a company called Atrium/Douglas. It is called "Anti-Aging Support" and includes thymus, mesanchyme and adrenal. (This is what used to be called ProHealth Molecular GF, except the new stuff has thymus in it.) It is for rejeuvenation only.

    Energy Flash (with mesanchyme and adrenal) can and should be used on a regular basis. He seems to like mesanchyme as well as adrenal for controlling stress on an ongoing basis.

    We have talked about ProBoost before, and he thinks it is somewhat helpful. He didn’t mention elderberry, but anything that prevents flus can be helpful in the long term.

    10. Continuing to follow the good habits with regard to taking care of our bodies used to build up strength prior to AV’s is extremely important.

    Keeping yeast levels low (see my post "Controlling Yeast") is crucial. He is pretty opposed to any antibiotics for this reason, since killing uncontrolled yeast is apparently much more difficult for the body than killing bacterial or mycoplasms (as least for CFS patients). Continuing no sugar (and to a lesser degree herbs) is extremely important.

    He now recommends 60 billion units of varied probiotics per day. This is equivalent to 60 regular capsules---obviously absurd. However, some companies make products with this much. He sells an 18-strain version with 60 billion units per capsule in his store ($50 for a month’s supply.) This can be obtained from other places. Pure Encapsulations has a 5-strain with 10 billion each that could help (six capsules is a lot more manageable than 60). Hyperloading the digestive tract should help yeast remain under control even when the diet includes stressors such as some white flour.

    The endocrine system may need less support if viruses stop attacking it. Food allergies may fade, but if they do not they definitely should be avoided since they stress the body. Klonopin or other sleep medications might not be needed, but they should continue to be taken if needed for a good night’s sleep (since deep sleep is an important component of staying well).

    Toxins are a stressor too. In my case, they do not seem to be the major problem, based on the previous tests we’ve had done. When I told him I had been fairly constipated since childhood, he said that was a pretty toxic place. Again, he just recommended as much vitamin C as humanly possible and huge amounts of probiotics. Apparently he thinks this is far more detoxifying than any fancy herbal combination I might find.

    11. If I get my immune system in order, I may be able to do more treatments.

    He still wants me to take growth hormone. I agree with this. Obviously my body has been doing no repair work whatsoever for a very long time, and repairs are always a good thing. If I can tolerate the HGH, it could help my long-term health a lot.

    He mentioned that he himself had just had a hernia operation and found hgh to be very helpful in recovery. I shared my experience about how much it helped me with my ankle injury (I’d still be in pain if it hadn’t been fixed by the hgh, I am sure.) If I do have to have any surgery etc. after I am "better," HGH seems a very important component of staying well long term, since healing takes a lot of resources.

    **

    The only other things that we talked about were specific to my yeast and hormone problems.

    I thanked him for solving my vulvadynia (I will share this soon). People have this for years and years, and he made up the formulae especially for me. I am such a challenge to him (both in terms of my screwed-up body and my probing mind) that he is determined he is not going to fail me on any problem I bring him, I think.

    I also told him that while my sinuses were better, my husband still complained about snoring and that there still seemed to be a problem. He already has concocted a nasal salve with antibiotics (applied with a Q-tip), but this infection seems to be a fungal one that is diflucan resistant. He said he would make a salve with ampotericin-b for me. He appears to have come up with the idea on the spot for me. I thought that was very clever.

    I’m uncertain about my hormone status, and so we’re going to check that. He wants to do CBC’s fairly regularly on the Famvir. (They need to be done more frequently on Valcyte.)

    **

    Oh, in addition, I mentioned to him that I was feeling sort of hyper and thought it would be helpful if I could reduce my bipolar tendencies (stemming from my head injury) further. They’re controlled by a drug, but fixing the injury is better. He has a trick called neural therapy that he uses, which I will explain at some point. He’s going to do a session on Monday, since we got through my whole agenda today. (I tend to think I’m the only person except his assistant M.D. who understands his theories and can contribute thoughts of my own, and so the extra half hour he gave me was not solely out of altruism. Plus after 9 years together, this is a big breakthrough and so it’s important to get it right.

    **

    I asked him again how in general I compared to his other CFS patients. He said that he thought that I was innately much sicker than most patients he sees (a very sick group to begin with), and that it had been frustrating to get me only up to a certain point and then have me plateau. He seems quite sure that this is going to be a profitable route for me, and that as long as I am careful with my health I should be well for a long time in the future.

    This should give hope to those individuals on the board who are very sick too. I really believe there is a way out. It’s not the way out of any other disease in the world, but it’s possible. There’s even theory and precedent. Certainly, it does require a lot of determination and a lot of work and (unfortunately) a lot of money. But having it be possible---after spending the last 11 years believing it was totally impossible---seems a real miracle to me.

    By the way, people here have been commenting to me (after I describe the activity level I am able to easily manage) that I seem far _less_ sick than the majority of people with CFS. I certainly have made very great strides since getting sick. Obviously, this is due to treatments other than AV's. (The AV thus far has just made me tired etc. from the huge die-off. Today--after two months trying to use the drug and then two days at a half-dose to prepare for my 200-mile drive to Indianapolis--I am feeling a bit better than before I started the drug. I still have a way to go.)

    Therefore, being diligent about pursuing all the "standard" routes pays off, if you're diligent about it. It's not just a prelude to the AV. It's a strategy in itself.

    **

    I forgot to ask about Valtrex (he never has brought it up). I will try to do so at neural therapy.

    Forebearance, I did not ask about nasal congestion since that was not my own major problem. Our conversation suggested to me that herxes occur in conjunction with the site where viruses are hiding. The mental/emotional symptoms that Jolie and I got seem to be related to killing viruses in the brain, for instance. I am thinking that Virustop may be killing something more superficial like a cold you’ve never been able to rid yourself of. That’s just a guess though. If I have time, I’ll mention this.

    It’s late now, but I wanted to write this quickly to see if people have questions or comments before Monday. I will try to get more information when he’s poking needles (hundreds of times) filled with procaine in my head then. I’ve certainly done it plenty of times before.

    Hope this makes some sense to others. It certainly makes sense to me, but I’ve been thinking about it intently for the past two months (since the only other thing I’ve been doing is herxing).

    He thinks that when (not if, when!) I get better I should write a book about my experiences, since they are so comprehensive and suggest that basically anyone can get better from this disease. It may be my moral duty to do so, I guess. He would have to contribute (even if I wrote his parts) just to give it validity. I don’t think he really wants to be famous and have huge numbers of people knocking on his door……if he can’t grow exotic plants, he’d rather limit his patients and spend a lot of time researching and thinking. But with six kids to put through college, it’s hard to turn patients down too.

    Anyway, he didn’t say one thing that I hadn’t considered before theory-wise, but he is in agreement with my own theory. And it makes me believe more strongly than before than strategy in dealing with this illness is crucial. I find it hard to believe that anyone who goes about this in the usual way (toss a huge quantity of drugs at extremely sick patients and then let them be) is going to be cured over the long term.

    Whereas I think that I have a chance of being "cured" (as long as I don’t screw myself over by doing something stupid as I did the first time I got sick), truly. I lost hope about eight years ago that there was even a smidgeon of a chance that might happen,, and so it’s kind of a miracle to think that (based on everything I know and understand and intuit) it seems even a remote possibility.

    I’m going to put this in my status report as well as in a separate post, since I’d like a wide range of responses if possible. Thanks much for reading!

    **

    ADDENDUM:

    Someone recently asked me if I had talked to Dr. Guyer about cancer. We did discuss this at the meeting.

    I said to him, I really want to take care of this problem now if I can. If I wait until I'm 90 when everyone has it sorted out, I will have wasted my whole life.

    He said, you won't live until you're 90 unless you fix this problem.

    I said, oh, yes, viruses cause cancer.

    He nodded.

    End of conversation.
  6. LongStruggle

    LongStruggle Guest

    Thank you very much; that was very helpful. I don't know what to do now. Yesterday I went and made an appt with Dr. Laura Black who is an associate of Dr. Lapp (Charlotte, NC). Their first appt is 3 hours long and costs $900. I had called Dr. Guyer's office and they told me $550 for 30 minutes. I like what you say about Dr. Guyer; that he is very mindful of building up the immune system and not overloading it with the antivirals. I know the die off that I have had with candida and I know that I would be struggling with die off if given heavy duty antivirals. My kinesiologist says that I always have some degree of viral infection affecting me; however, I have never been tested for virals. My heart is a key problem as of late and I don't know if Dr. Lapp's group would be more helpful to me or if I'm better off with Dr. Guyer. I wish I could find out more info re: Dr. Lapp.

    Thanks again I really appreciate all that you communicated.
  7. Slayadragon

    Slayadragon New Member

    I'm afraid I don't know anything about Dr. Lapp either. I wish you could find out before spending so much money.

    Good luck. Let me know what happens, please.

    Best, Lisa
  8. LongStruggle

    LongStruggle Guest

    The money issue is the big thing right now. It costs so much just to see if a doctor can be helpful and apart from 2 weeks in January, I haven't worked since September. My concern with Dr. Guyer is he is only looking at the viral aspect and my concern with Dr. Lapp's group is they are avoiding the issue of the viral. If Dr. Lapp's group is only doing vitamins, minerals, exercise then I don't need that. I'm well educated about all of that.

    My concern with Guyer is he up on the latest stuff from Cheney re: the heart and is he willing to go there. Does he do tilt table test?
  9. Slayadragon

    Slayadragon New Member

    Dr. Guyer is by no means only looking at the viral aspect. He's not crazy about drugs in general, but seems to be making an exception for this particular class of drugs for patients who seem likely to respond to it and who already have explored other ways of improving their health.

    I never had a tilt table test. Low blood pressure has been a problem for me in the past, but as my adrenals got stronger that one dissipated. I only had a very small drop in my blood pressure when I did the sitting-then-standing thing, and he didn't focus on it further.

    At my last meeting, I had a long list of things to discuss with him. He picked out the Cheney item and said that he thought that work was interesting. His view was that since I already was on an anti-viral, that should take care of the heart issue eventually (since it's in his view a virus). But he does think the heart is an issue.

    I don't know how many patients he's had resolve their heart issues, though. I didn't get the impedance test, although I'm going to ask about it at our last meeting.

    Anyway, he's familiar with Cheney's work and seems to respect it. I know he uses all the Cheney treatments. I've had the magnesium and kutapressin shots before (although I unfortunately can no longer have shots from bottles with rubber stoppers because of my latex/rubber allergy). He suggested Nexavir as an adjunct to my viral drugs, but I'm certain he's offer it on his own.

    And he uses the Atrium/Douglas products a whole lot. (I'm of the belief that if heart problems are noted, Cheney is mostly using an Atrium/Douglas special compound of just mesanchyme. I see no reason why Guyer couldn't get that if heart problems seemed an issue for you and you weren't ready to do the AV route yet. He certainly doesn't seem to be pushing people to do AV's until they're ready.....quite the contrary, he wants them as healthy as possible so that they don't need to take the AV's longer.)

    I'm sure he'd have no objections to hawthorne either. Is there anything else that Cheney's using? I can't remember it being anything I hadn't tried.

    Anyway, I am going to ask him about the impedance thing at my next visit in a couple of weeks. Perhaps that will give you a better idea of how enthusiastic he is about Cheney's route. He certainly aware of it and interested.

    Perhaps if you talk to his staff again also, you can see if he's pursuing that route.

    BTW, his wife has run the office in the past, although she seems to be at home with their youngest most of the time now. Who did you talk to on the phone? Were they nice to you? What information did they give?

    Best, Lisa

  10. cherylsue

    cherylsue Member

    Thanks for the inspiring story of your friend's mother. I'm so glad the disease resolved itself for her. I love to hear stories like that.

    It's interesting to note that the antiviral therapy and delayed recovery (6 mos.-year) correlates with Dr. Cheney's 3 phase (older) model of CFS. He says it takes the body a long time to detoxify and clear the debris after the virus leaves.

    Patience.Patience. You still have a long road ahead of you. Suppression. Elimination. Recuperation. I think you fortified your body to tackle the antivirals. Maybe, Famvir is all you need. It certainly is kicking butt.

    Anyway, there is hope, and that is so important.

    Hugs,
    CherylSue
  11. LongStruggle

    LongStruggle Guest

    I called back Dr. Guyer's office today in between your responses. Lori is going to have his wife call me back to address some of my questions. One good thing, however, if I decide to go to Dr. Guyer, I can get in next week. I feel that I need someone to address all of my issues -- viral, and heart. I too want the impedance cardiography test since I think that is one of my major problems. I'm not sure Lapp's office is even doing that. I know they do exercise stress test and tilt table. It sounds like Dr. Guyer is open to it all, but whether he'll order tests is possibly another story. I guess the big deciding factor for me is will he help me get disability. I have not been able to get back to work and if I go the antiviral route, I'm likely to get worse before I get better.
  12. LongStruggle

    LongStruggle Guest

    Does Dr. Guyer use anti-yeast drugs: diflucan, sporonax, etc? Do you know if he uses provigil (narcolepsy drug) and/or ADHD meds (ritalin, adderall, etc.)?
  13. Slayadragon

    Slayadragon New Member

    There are a few people on the board who have had the impedance thing done though. I'm under the impression that it cost less than $100, and so it wouldn't be that big of a deal.

    I've gotten Diflucan from Dr. Guyer.....although more for sinus infections rather than systemic ones. (I think this is the right way to go.) He's not opposed to prescribing any sort of drugs, but would rather address problems without them when possible.

    Have you ever tried Provigil or the amphetamines? I've not heard great things about them on the board.

    Give me a report on how your talk with Lisa Guyer goes. Are they charging you money for it?

    Best, Lisa
  14. LongStruggle

    LongStruggle Guest

    The main question for Lisa Guyer is will her husband help me get disability and her impression of the kinds of things her husband does.
  15. Slayadragon

    Slayadragon New Member

    Let me know how your talk went with Lisa before you decide anything, then.

    Good luck.

  16. LongStruggle

    LongStruggle Guest

    At first the office told me Dr. Guyer wouldn't help for disability and then later they said he would. I think they might have been fearful that all I wanted was disability. I went ahead and made an appt for this Thursday. Hopefully, the snow storm will be over by then. Hopefully he will be able to help me. It is a 6 hour drive for me. Do you stay overnight when you go; if so where and how much?
  17. Slayadragon

    Slayadragon New Member

    It's really much better that you talk to Dr. Guyer about disability anyway. He's a lot less likely to say no than the administrative staff, I think.

    I have friends in Indianapolis, and so sometimes I stay with them. The closest place to Dr. Guyer's office is the Holiday Inn/Holiday Inn Express in Fishers (around 96th Street), but it's kind of expensive....about $80-90 a night. There's a Sleep Inn (I think) right near there too, but it's about the same price.

    This is a more expensive part of the city, and so hotels are kind of expensive. I don't know what road you're driving to Indianapolis on, but if you can find something outside of the city on your way, it might be a lot less expensive.

    Good luck with your visit, and be sure to let me know how it goes. Especially if you have any qualms, maybe I can give you a some useful info. Every doctor's office (especially ones specializing in this disease) has its own quirks, and this one is no different. I've been seeing him for nine years though, and so I should be able to help you make sense about anything that happens so that you can make an informed decision about whether to continue there.

    BTW, if you're introduced to Amgad (sp.?), I'd suggest making a special effort to get to know him a bit. He's an M.D. who serves as Dr. Guyer's assistant. He's really nice and can be very helpful.

    Best of luck, Lisa


    [This Message was Edited on 02/12/2007]
  18. LongStruggle

    LongStruggle Guest

    I'll let you know what happens.