summary of Sharp visit

Discussion in 'Lyme Disease Archives' started by pawprints, Oct 27, 2007.

  1. pawprints

    pawprints New Member


    I just saw Sharp...out of town visit. For now, I am staying the course of Nutramedix products. Just adding in some more things, especially with hormones like DHEA.

    He is a great caring and willing to help.

    Only thing I'm not sure about is the thyroid. We are going to try to get me off Synthroid and increase my coumpounded T3. Any experiences out there? He wants bloodwork on the levels about every 3-4 weeks.

    Still on my sleep meds, but may try Xyrem again if I ever get up the nerve. I gave me bad anxiety the next day.

    That's my little summary.
    Any other Sharp patients out there?
  2. mollystwin

    mollystwin New Member

    I'm not a sharp patient, but I just wanted to say that I'm happy that your doctor will be monitoring your compounded T3 every 3-4 weeks. I was overdosed on compounded T3 by FFC last year and was miserable!! My new doctor is new a much better job monitoring my T3.

    I'm glad you like your new doctor. It's so important!!

  3. pawprints

    pawprints New Member

    Can you tell me what happens when you are overdosed on T3?

    Sharp said if I experienced any heart thumping, nervousness, etc...that would also be a sign? I am going to see my local doctor to discuss this as well. I don't want to screw around with my thryoid.

  4. Slayadragon

    Slayadragon New Member

    Also diarrhea, feverish feelings and headaches (though if you have these normally as a result of other problems, they may be difficult to distinguish).

    My experience was that the symptoms emerged within several hours of taking the thyroid medication, and went away a number of hours after that.

    Your T3 should be time released. If it's not, you can get "thyroid storm" symptoms from having too much at one point in the day even if your total for the day is not to high.
  5. mollystwin

    mollystwin New Member

    Just saw this sorry! Hope you are doing well with they thyroid.

    Yes the heart racing and thumping, nervousness are the sypmtoms I experienced when I was taking too much.

  6. munch1958

    munch1958 Member

    I couldn't get the FFC to give me enough T3. They did monitor it every 4 months. While they are titrated up the dose they should monitor it every 3-4 weeks.

    My new conventional endocrinologist is managing my hormones. He checks everything every 3 months. If I don't feel like it's enough I bump up my appointment.

    So far I can see we will go to bat over ranges. He likes mid-range I like high-range. I'm on HGH so I have to stick with an endo otherwise my insurance won't cover the RX.

    One thing I don't understand is why some docs use Free T3 to dose and others use Total T-3. I thought Free T3 was what's available for the body to use. I believe the FFC is in the Free T3 camp.

    If you have thryoid resistance you need higher than normal doses to feel good. Wouldn't that mean you'd be high on T3, low on T4 and who cares about TSH?
  7. pawprints

    pawprints New Member

    Thanks for your replies.

    This is my update on the T3. I decreased my Synthroid dose again. This time from 100 to 50. I increased my T3 dose from 40 and 40 to 50 and 40. So far I have no bad side effects, except maybe my sleep is not as good. But the sleep could be due to other reasons.

    I am to rerun my labs after 3 weeks and these doses. This means it will be about 4 weeks before my doctor sees them and we discuss them. At that point we will decide what to do next.

    I am not sure my insurance will pay for these labs so often, but I know it is important.

    Yes, when Sharp left the FFC I followed him. I only went there because of him anyway so for me it was an easy decision.

    My main problem again is insurance doesn't pay for my visits with him and also doesn't pay for the phone consults. So I have to be very choosy with when I speak to him and while changing my dose that is difficult.

    Thanks for all the input. I will keep you updated.

    P.S. He wanted me to try the Xyrem one more time but only take it once per night and with my Klonopin. Well, the last 2 times, it increased my daytime anxiety to an unforgiving point. But I may work up the courage to try it one more time. I am still struggling with sleep issues and he believes this drug can help.

  8. Daisys

    Daisys Member

    I take klonopin with xyrem. It works real well that way. The klonopin smooths out the xyrem's alerting effect as it wears off. Also, Cheney has stated that klonopin is neuroprotective for our illness.

    I suggest going to the Talk about Sleep site, and find the narcolepsy board. They have been troubleshooting xyrem for years, and if you do a search, or even just go back and read any heading that looks like it discusses anxiety, you'll find what others have done to make it work for them.

    Many experienced trouble when starting out with xyrem, and most of the time, it was fixed with either dosing changes or nutrition. I was taking a lot of magnesium and still needed more. I felt weird the next day, until I added more good quality magnesium.

    Xyrem is the king of sleep meds. It's naturally found in the brain during deep sleep, so the brain knows what to do with it. It's by products are water and carbon dioxide, so it's actually safer than many drugs out there.

    Can you tell I'm a fan of xyrem? My health improved so much with getting good sleep, I think I went from about a 20% to 70% in a year. (Then I got hit with a relapse and now am just getting back to about %60.)

    I hope you can make it work for you.

  9. pawprints

    pawprints New Member

    wow! Thanks for your help. I started Xyrem when it first came out and no one knew awhole lot in terms of CFIDS/LYME users.

    I have a few more weeks of rennovation and then am going to try it again, but only the one dose. That way I won't wake up wired. I was told by a sleep doctor I could combine Lunesta or Ambien, Xyrem and the Klonopin. Any thoughts?

    I would give anything to wake up rested!!!
  10. Daisys

    Daisys Member

    I know this is a lot to wade thru, but it's why I'm glad I'm taking klonopin with xyrem. It's really worked well for me.

    Dr. Paul Cheney Discusses the Benefits of Klonopin

    by Carol Sieverling


    Editor’s Note: The following is based on a recent interview conducted by Carol Sieverling with Dr. Paul R. Cheney, M.D., Ph.D., and the article "CFIDS Treatment: The Cheney Clinic’s Strategic Approach" (CFIDS Chronicle, Spring 1995). Dr. Cheney gave permission to share this information, but has not reviewed or edited it.

    Many CFIDS specialists prescribe the drug Klonopin. In the October 1999 issue of The Fibromyalgia Network, nine CFS/FM specialists summarized their most effective treatments, and six included Klonopin. Interestingly, the three who did not are primarily FM specialists.

    Dr. Cheney prescribes Klonopin to address a condition associated with CFIDS called "excitatory neurotoxicity." To explain this condition to patients, he draws a line with "seizure" on the far left and "coma" on the far right. A big dot in the middle represents where healthy people are when awake. A dot somewhat to the right of the middle indicates where healthy people are when asleep – slightly shifted toward coma. He highlights in red the left portion of the line, from seizure to the middle, and labels it "Neurotoxic State" (damaging to the brain). He highlights in blue the right portion of the line, from coma to the middle, and labels it "Healing State."

    In CFIDS, an ongoing injury to the brain shifts patients toward seizure. A dot to the left of the middle, marked "injury," represents the position of CFIDS patients. This puts us in the red "Neurotoxic" zone. When we shift toward seizure, we often experience "sensory overload." It’s as if our brain’s "radar" is too sensitive. Our neurons (nerve cells) are sensing stimuli and firing when they should not. This causes amplification of sensory input. Light, noise, motion and pain are all magnified. At the beginning of their illness, many patients report feeling exhausted, yet also strangely "wired." The "wired" feeling is the slight shift towards seizure that occurs as a result of the excitatory neurotoxicity.

    Cheney frequently uses the term "threshold potential" when discussing excitatory neurotoxicity. (Think of the threshold - bottom - of a doorway. The lower it is, the more accessible it is. When it is at floor level, everything can enter. When it is raised, access is restricted to taller people. If it is too high, no one can enter.) Threshold potential refers to how much stimulus it takes to make neurons fire. If the threshold potential is too low, even slight stimulation is "allowed to enter" and is detected by the neurons. This causes the neurons to fire, resulting in sensory overload. If the threshold is dropped to nothing, all stimuli get through and the neurons fire continuously, resulting in a seizure. If the threshold is raised, only stronger stimuli can make neurons fire. A healthy person’s threshold potential naturally rises at bedtime, promoting sleep. If the threshold potential is too high, you feel drugged or drowsy. If the threshold potential is raised extremely high, coma results.

    Two receptors in the brain, NMDA and GABA, determine the threshold potential. During the waking hours of a healthy person, NMDA and GABA should be equally active. This balances the person in the middle of the seizure/coma continuum. NMDA stimulates, and GABA inhibits. If NMDA increases, one moves toward seizure. If GABA increases, one moves toward coma.

    In CFIDS, NMDA is more activated than GABA, lowering the threshold potential. This causes neurons to fire with very little stimulation, resulting in sensory overload. This condition of excitatory neurotoxicity is dangerous. Dr. Cheney emphasizes that in an attempt to protect itself, the body will eventually kill neurons that fire excessively. He states that brain cell loss can result if this condition isn’t addressed.

    How can the brain be protected against excitatory neurotoxicity? Klonopin. This long acting benzodiazepine has been Dr. Cheney’s most effective drug for CFIDS over the years. He believes that Klonopin and the supplement magnesium may be two of the most important treatments for CFIDS patients because of their neuroprotective qualities. He recommends two or more 0.5 mg tablets of Klonopin at night. Paradoxically, very small doses (usually a quarter to a half a tablet) in the morning and mid-afternoon improve cognitive function and energy. If the daytime dose is low enough, you’ll experience greater clarity and think better. If the daytime dose is too high, you’ll become drowsy. Adjust your dose for maximum benefit, taking as much as possible without drowsiness. Adjust the morning dose first, then take the same amount mid-afternoon if needed, then take three to four times the morning dose at bedtime. Dr. Cheney recommends doubling the dose during severe relapses.

    Dr. Cheney most frequently prescribes the combination of Klonopin and Doxepin, along with the supplement "Magnesium Glycinate Forte." Magnesium Glycinate alone is a good choice for the more budget minded( sells it as "Magnesium Plus".) A common dosage of magnesium is 200 mgs at bedtime. Too much magnesium can cause diarrhea, though glycinate is usually the best tolerated form.

    Cheney prescribes Doxepin in the form of a commercial elixir (10mg/ml). At low doses, this tricyclic antidepressant acts as a very potent antihistamine and immune modulator. Doxepin acts synergistically with Klonopin to assist sleep, and may improve pain. Patients tend to be very sensitive to Doxepin, which can cause morning fog and fatigue if the dose is too high (5 to 10 mg or higher). He recommends starting at two drops a night and gradually increasing the dose until "morning fog" becomes a problem. Most patients can’t tolerate more than half a cc.

    On a handout entitled "Neuroprotection via Threshold Potentials," Cheney lists six substances that can protect the brain. Under the category "NMDA Blockers" Cheney lists:

    1. Parenteral magnesium and taurine (intramuscular injections of magnesium and taurine, usually given with procaine) 2. Histamine blockers (Doxepin Elixir) Under the category "GABA Agonists" (increases GABA) Cheney lists: 3. Klonopin 4. Neurontin 5. Kava Kava 6. Valerian Root

    Klonopin is taken "day and night"; Neurontin "night, or day and night"; kava kava “daytime only”; and valerian “nighttime only.” The first four are by prescription, the last two are herbs. In my limited experience, only certain patients are put on magnesium/taurine injections, and then only for a limited period before switching to oral supplements.

    Many myths abound concerning Klonopin. When asked about these myths, Dr. Cheney shared the following information.


    When the generic Clonazepam came on the market, many patients switched to it because it was less expensive than Klonopin. Cheney then began hearing that most patients had to take more Clonazepam to get the same effect. Generics aren’t exactly identical to the original products, and with most drugs the slight variations don’t matter. However, most CFIDS patients can tell the difference between Klonopin and its generic form, Clonazepam. Most find Klonopin to be more effective.


    Dr. Cheney was adamant that Klonopin is not addictive. In treating thousands of patients, he has never seen a patient become addicted to Klonopin. He reviewed the definition of addiction, stating that it involves: (1) psychosocial disruption, (2) accelerated use, (3) inappropriate use, and (4) drug seeking behavior.

    Dr. Cheney said a case might be made that Klonopin is habituating. It’s true that it can’t be stopped suddenly. You must taper off of it gradually. However, he was cautious about even calling it habituating. The process of tapering off a drug is not the same thing as withdrawal, a term that implies addiction.

    Dr. Cheney said to keep in mind that Klonopin is given for a physiological problem – excitatory neurotoxicity. It’s prescribed to adjust the threshold potential: to keep neurons from firing inappropriately and being destroyed. He stressed that Klonopin should never be given unless you intend to raise the threshold potential. He stated, "Problems arise when you begin to use benzodiazapines for reasons other than threshold manipulation." However, CFIDS patients have a "threshold potential aberration" and need Klonopin (or something similar) to avoid brain injury. Dr. Cheney has never seen a recovered patient have difficulty coming off Klonopin. He stated, "When you no longer need the drug, coming off it is very easy."

    On the other hand, trouble arises when someone who still has an injured brain tries to come off Klonopin. It’s like a thyroid patient stopping their thyroid medication. Dr. Cheney warned, "All hell breaks loose". However, it’s not because the drug is addicting, and it’s not withdrawal. The condition still exists, and the body lets you know it has a legitimate physical need for the drug. Cheney stated, "When a CFIDS patient who is still experiencing the underlying mechanisms of brain injury goes off Klonopin, there is a burst of excess neural firing and cell death. That’s the havoc we hear about that is mistakenly called withdrawal."


    Dr. Cheney said that he honestly doesn’t understand this concern. He believes Klonopin might disrupt the sleep of people who take it for conditions other than the threshold potential aberration found in CFIDS. He also acknowledged that if you are looking just for drugs to facilitate sleep, Klonopin is certainly not the first one to come to mind, nor should it be used to induce sleep in "ordinary" patients. It’s not a sleep drug per se. However, a large part of the sleep disorder of CFIDS is excitatory neurotoxicity and the resulting shift toward seizure. If you treat this condition with Klonopin, then you have treated a large part of the sleep disorder in CFIDS. Most importantly, he said he simply does not see stage 4 sleep disruption in his patients on Klonopin.

    Towards the end of this discussion on Klonopin, Cheney smiled, and remarked, "But suppose I’m wrong about the brain injury and the threshold potential aberration and the shift toward seizure? What if I’m wrong about your need for Klonopin? I’m absolutely sure I’m right, but what’s the worst case scenario? Do you know what long-term studies on Klonopin have shown? Reduced incidence of Alzheimer’s Disease. Alzheimer’s Disease is a complicated and convoluted way of knocking out your neurons, and Klonopin protects your neurons. Now it’s believed that Klonopin didn’t actually stop Alzheimer’s. It just delayed its onset so long that everyone died of something else before they ever got it - which is to say you won’t get Alzheimer’s. You’ll die of something else first."

    The last question Cheney addressed concerned the dose: what happens if the dose is too high? He said the only down side was that if you took a little too much (we are not talking overdose here) it would shift you toward coma on the continuum. It would shut your brain down to some degree, and thus impact your ability to function. This is inconvenient, but it’s not harmful. In fact, it shifts you into the "healing state" on the continuum. You may feel like a zombie, but your brain is protected and your neurons are not getting fried. However, not being able to function isn’t an option for most of us, so we need to find the maximum dose that doesn’t make us drowsy.

    Dr. Cheney emphasized that Klonopin, Doxepin, and magnesium are very, very good at protecting the brain from cell death due to excess firing. However, they can’t stop the underlying mechanisms of CFIDS that are injuring the brain in the first place.

    Though it can’t stop the underlying mechanisms causing the injury, Klonopin can protect your brain and keep your neurons from being destroyed. Then, as Cheney put it, "When you come out on the other side of this, you’ll have more of your brain left."

  11. pawprints

    pawprints New Member

    Thank for the info. Sharp is a big believer in Cheney and for that reason also said the Klonopin was ok to stay on. I have been at the same dose for many, many years.