I've learned to treat doctors the same way I treat women. Never just take the doctor you have and assume that they will do what is in your best interest. Work out what traits are good to have in doctors in general. Work out what traits you personally like in doctors. Be in touch with yourself and know what your needs are in the moment. Actively seek out a doctor that respects you, knows their field and can be counted on to give you what you need. For other more transient needs, like prescriptions that you have to lie to get out of the system, 'one appointment stands' or 'a doctor on the side' are the way to go!I must tell you that I seriously do not trust my doctor(s).
Ritalin vs. Modafinil vs. Selegiline
#31
Posted 06 November 2008 - 04:52 AM
#32
Posted 06 November 2008 - 04:00 PM
I can't in good conscience recommend that you attempt to treat this fatigue with random supplements. I used to be of a similar mind and I wasted THOUSANDS of dollars on supplements trying to fix symptoms of unknown origin. You have to realize chronic fatigue is a symptom of something else, it is not a disorder that stands alone and randomly occurs. It has a cause and it will elude you indefinitely unless you get some diagnostic help from doctors. If you don't like yours, find new ones (I emphasize plural here). If you suspect a particular disorder, like hypothyroidism, make an appointment with an endocrinologist specifically to test you for it. If it comes up negative, you spent $20-$30 on the copay and you gained peace of mind and ruled out a possibility, getting you that much closer to the real answer. In your case, with the extensive history of tick bites, your risk of Lyme and other tick borne disease is very high and it would be prudent to see a Lyme specialist, if only for a single appointment, to test you correctly.
I would hate to watch another person waste years of time and thousands of dollars shooting blindly in the dark. Continue to reject the CFS label, that is a doctor throwing his hands up in the air out of laziness and unwillingness or inability to creatively pursue a real diagnosis -- "you have CFS, here's a script for provigil, get out of my office".
Edited by FunkOdyssey, 06 November 2008 - 04:07 PM.
#33
Posted 06 November 2008 - 08:16 PM
#34
Posted 06 November 2008 - 08:27 PM
http://goodbelly.com/
http://goodbelly.com/store_locator
Its funny because when I first read about L. Plantarum 299v a couple of years ago, it was only available to Europeans and I was struck with profound probiotic-envy. I complained to everyone about how far ahead of us the Europeans were in the realm of probiotics and settled for second rate options. Then I just happened to search for L. Plantarum 299v developments last month and lo and behold, the enterprising founder of Silk soy milk brought it to America in a low sugar, non-dairy package. Awesome.
Edited by FunkOdyssey, 06 November 2008 - 08:40 PM.
#35
Posted 07 November 2008 - 08:42 PM
Regarding the tests - you're right. I should try to get tested regardless of the hardship from my doctors. You've mentioned before which tests I should perform but could you summarize it again in a list so that I'll know what to ask for? Please include EVERY test you feel might shed light on a condition of excessive sleepiness (for lack of a better name, avoiding the CFS definition).
An interesting find I've noticed is about Spirulina, which is said to support gut flora and promote probiotic growth. I'm now experimenting with 3g of Spirulina daily, but I doubt it'll make much of a difference. As for probiotics I currently take - mostly acidophilus and B. longum, which seem like the most common supplement. There are other 13 strains I take in another product but at a much lower amount.
#36
Posted 07 November 2008 - 09:10 PM
TSH
Free T3
Free T4 (these three might be combined in some kind of "thyroid panel")
optional: testosterone while we're poking around in the endocrine system, can *rarely* be the cause of fatigue
These rule out anemia and hypothyroidism which are two common causes of fatigue. If you ever been told by a significant other that you stop breathing for periods of time while sleeping, or wake gasping for air, or are significantly overweight, or have any other sleep apnea risk factors you might want to get a sleep study performed.
From Igenex, you should have tests #188 and #189 performed, the IgM and IgG Western Blot.
WESTERN BLOTS
The Lyme Western Blot tests involve a highly complex visual determination of protein bands, based on their molecular weights and intensities. For both tests, IGeneX uses multiple negative controls to serve as baselines for comparison to positive responses. The IGeneX report form provides an interpretation along with the results in detail for the physician. Two Western Blot tests are available: IgG and IgM.
IgG WESTERN BLOT
The IgG Western Blot is an immunoassay and qualitative test in which antibodies are visualized. The IgG antibody is typically present a few months following initial infection. It is a qualitative test and is generally more sensitive and specific than the ELISA. This test must be used if the Lyme IgG/IgM antibody serology or Lyme IgG/IgA/IgM IFA is equivocal or positive. The somewhat specific Lyme antibodies of importance are against the following molecular weights of the B. burgdorferi antigens: 23-25 kDa (Osp C); 31 kDa (Osp A); 34 kDa (Osp B); 39 kDa; 41 kDa (common of flagella-bearing organisms); and 83-93 kDa. The term “kDa” refers to kilodalton for molecular weight designations. The term “Osp” refers to Outer Surface Protein of the bacteria.
There are currently multiple criteria that support a positive blot. “Positive” means consistent with the presence of antibody against B. burgdorferi. The CDC/ASTPHLD criteria are very conservative and require 5 of 10 bands for a positive result; equivocal or borderline results are not recognized. Unfortunately, not all Lyme patients have similar immune systems: only approximately 70% of those with Lyme disease generate a strong enough antibody response to appear on a western blot. IGeneX criteria of 2 starred bands is >96% specific for exposure to B. burgdorferi.
IGeneX has several years of clinical data that support more liberal reporting criteria.10 In addition, current studies show that the CDC/ASTPHLD criteria miss some patients with culture-proven erythema migrans (EM).5,11 Both the IGeneX and the CDC/ASTPHLD criteria are included on the IGeneX report form sent to the physician. 3,5,8,9 The CDC/ASTPHLD criteria for positive results are 5 of the following 10 antigenic bands: 18 kDa, 23-25 kDa (Osp C); 28 kDa, 30 kDa, 39 kDa; 41 kDa, 45 kDa, 58 Kda, 66 KDa, and/or 83-93 kDa. IGeneX criteria for positive result is 2 of the following 6 bands: 23-25kDa, 31 kDa (Osp A), the 34 kDa (Osp B), 39 kDa, 41kDa and/or the 83-93 kDa. 31kDa and 34kDa antigens are included to the criteria due to their importance in the recurrent and/or persistent disease period. IGeneX criteria of is 96% specific for exposure to B. burgdorferi.
A positive IgG result with clinical history may be indicative of Lyme disease. Patients with other spirochetal disease and/or who test positive for rheumatoid factor or Epstein Barr virus may have cross-reacting antibodies. A positive response in this, as in any antibody assay, indicates sensitization, not necessarily active disease. 12
Figure 4. Significant antibodies detected by Western Blot (Lane 1 has kDa marker proteins)
Test # 189
Description Lyme IgG Western Blot
Specimen 0.5 ml Serum
Collection & Shipping
Collect in Red top tube, separate serum and send at room temperature.
OR Collect in SST tube, spin and send at room temperature.
CPT CODE: 86617
IgM WESTERN BLOT
The IgM Western Blot is a very sensitive indicator of exposure to B. burgdorferi. It may be positive as early as 1 week after a tick bite. This test will usually remain positive for six to eight weeks after initial exposure. Re-exposure will also cause this test to be positive for a brief period of time. For the testing to be complete, it is preferable that the IgM blot be run along with the IgG blot.
The antibody specificities of importance for the IgM blot are the same as those for the IgG blot. The CDC/ASTPHLD criteria for positive results are 2 of the following 3 antigenic bands: 23-25 kDa (Osp C); 39 kDa; and/or 41 kDa.8,9 IGeneX adds the 31 kDa (Osp A), the 34 kDa (Osp B),10,12 (with the argument that these two antigens were used for the vaccines and therefore, antibodies to these antigens are of importance) and/or the 83-93 kDa to the criteria due to their importance in the recurrent and/or persistent disease period. IGeneX criteria of 2 bands is 96% specific for exposure to B. burgdorferi. Sera from patients with some acute viral infections can give false positive results. Therefore, an IgM viral panel may useful to rule out false positives IgM Western blot results due to viral infection. Note: The IgM Western blot is often positive in patients with persistent infection.6 Sometimes it is the only marker detected.
A positive IgM result with clinical history may be indicative of early Lyme disease or persistent infection in otherwise serologically negative individuals. Recently reported data support our observation that some Lyme patients may have only restricted IgM response to B. burgdorferi.
Test # 188
Description Lyme IgM Western Blot
Specimen 0.5 ml Serum
Collection & Shipping
Collect in Red top tube, separate serum and send at room temperature.
OR Collect in SST tube, spin and send at room temperature.
CPT CODE: 86617
If all of this comes up negative I would start chasing viral possibilities, of which there are several.
If you come up with absolutely nothing after exhausting all of those possibilities and everything that any of your more imaginative doctors come up with (heavy metals, mold, other similarly rare and unlikely options), I would try one empiric trial of minocycline and another with valtrex or valcyte while having CBC and chemistry, liver, kidney, and pancreatic function monitored by a physician (monthly blood test). This kind of self-doctoring would be an absolute last resort and I don't recommend it -- I'm just telling you what I would do.
Good luck!
P.S. do you have any issues with digestion, gut health, etc? I notice you are taking multiple probiotics already and average people do not typically have much interest in probiotics until gut problems strike. It is potentially relevant.
I am also making a basic assumption that you eat a healthy diet rich in fruits and vegetables, and low or zero processed foods, junk food, refined grains, no excessive sugar consumption, no excessive caffeine or other stimulant abuse, get adequate exercise and sleep, etc etc. If any of this is untrue you can put the testing on hold and straighten yourself out first.
Edited by FunkOdyssey, 07 November 2008 - 09:22 PM.
#37
Posted 09 November 2008 - 01:12 AM
I have a case of chronic fatigue which is characterized by "sleepiness" rather than lack of energy. This distinction is important as I've been experimenting with several "energy enhancing" supplements, without any major success. My main problem is feeling "sleepy", not necessarily tired.
The distinction is apparent when I'm taking Ritalin (either Concerta, LA or the regular kind) for functioning normally - while I'm filled with boosting energy (which keeps me awake and functioning), I nevertheless still feel an urging inclination to close my eyes, like feeling the sleepiness "underneath" it all.
Since I've seen some posts here about Modafinil and Selegiline, I was wondering about the differences in their effects compared to Ritalin (which, in its defence, HAS had a major positive effect on me, both nootropic and antidepressing... the latter is also distinctive from Prozac, which I also take, where the Ritalin relates more to my motivation and "drive", and Prozac is more for general satisfaction and wellbeing).
I normally take 2.5mg Selegiline together with 50 - 100mg Modafinil. I take the Selegiline about 30 minutes or 1 hour before taking the Modafinil. Although I've only been experimenting myself with these two drugs for a little less than one month. What I do is take them irregularly and "as needed".
I feel cognative enhancement with Selegiline. Whereas, I feel 'extremely motivated' for about eight hours every time I take Modafinil. Together they really seem to compliment each other. That is why I mention that I take them together as a combination.
I've never taken Ritalin, but I use to take Adderal. I can truly reiterate what many people say: That Modafinil is almost as good as Adderal, except without all the "negative" side effects of Adderal, Methamphetamine, and probably to a lesser degree Ritalin.
Just my two cents.
It's funny that you post all this now. I have been considering trying modafinil. As I mentioned in one of my other posts on here, I am kinda going through a tough time in my life. I feel tired most of the time, but my sleep is cut off around 5 or 6 am when I am awaken for no reason other than general anxiety and uncertainty about my future. I have never felt this level of doubt and resulting distraction / lack of focus before. I read up on Modafinil on wikipedia and it sounds like a good fix for all my current symptoms. Question is, how did you get Modafinil? I would imagine that it is difficult to acquire.
Ghostrider, it sounds to me like you dont need medication, rather some CBT therapy would help you with your thoughts. If you are having mental disturbances of your future well being, medication of any form will not alleviate this. You should see a clinical psychologist who uses cognitive-behavioral therapy (CBT), there are studies that have shown CBT therapy to be more effective then any medication (SSRI's, anti-anxiety, etc) as well as a having a lesser relapse rate than traditional psychotropics.
#38
Posted 09 November 2008 - 08:47 PM
CBC (Complete Blood Count) and Chemistry Panel
TSH
Free T3
Free T4 (these three might be combined in some kind of "thyroid panel")
optional: testosterone while we're poking around in the endocrine system, can *rarely* be the cause of fatigue
These rule out anemia and hypothyroidism which are two common causes of fatigue. If you ever been told by a significant other that you stop breathing for periods of time while sleeping, or wake gasping for air, or are significantly overweight, or have any other sleep apnea risk factors you might want to get a sleep study performed.
From Igenex, you should have tests #188 and #189 performed, the IgM and IgG Western Blot.WESTERN BLOTS
The Lyme Western Blot tests involve a highly complex visual determination of protein bands, based on their molecular weights and intensities. For both tests, IGeneX uses multiple negative controls to serve as baselines for comparison to positive responses. The IGeneX report form provides an interpretation along with the results in detail for the physician. Two Western Blot tests are available: IgG and IgM.
IgG WESTERN BLOT
The IgG Western Blot is an immunoassay and qualitative test in which antibodies are visualized. The IgG antibody is typically present a few months following initial infection. It is a qualitative test and is generally more sensitive and specific than the ELISA. This test must be used if the Lyme IgG/IgM antibody serology or Lyme IgG/IgA/IgM IFA is equivocal or positive. The somewhat specific Lyme antibodies of importance are against the following molecular weights of the B. burgdorferi antigens: 23-25 kDa (Osp C); 31 kDa (Osp A); 34 kDa (Osp B); 39 kDa; 41 kDa (common of flagella-bearing organisms); and 83-93 kDa. The term "kDa" refers to kilodalton for molecular weight designations. The term "Osp" refers to Outer Surface Protein of the bacteria.
There are currently multiple criteria that support a positive blot. "Positive" means consistent with the presence of antibody against B. burgdorferi. The CDC/ASTPHLD criteria are very conservative and require 5 of 10 bands for a positive result; equivocal or borderline results are not recognized. Unfortunately, not all Lyme patients have similar immune systems: only approximately 70% of those with Lyme disease generate a strong enough antibody response to appear on a western blot. IGeneX criteria of 2 starred bands is >96% specific for exposure to B. burgdorferi.
IGeneX has several years of clinical data that support more liberal reporting criteria.10 In addition, current studies show that the CDC/ASTPHLD criteria miss some patients with culture-proven erythema migrans (EM).5,11 Both the IGeneX and the CDC/ASTPHLD criteria are included on the IGeneX report form sent to the physician. 3,5,8,9 The CDC/ASTPHLD criteria for positive results are 5 of the following 10 antigenic bands: 18 kDa, 23-25 kDa (Osp C); 28 kDa, 30 kDa, 39 kDa; 41 kDa, 45 kDa, 58 Kda, 66 KDa, and/or 83-93 kDa. IGeneX criteria for positive result is 2 of the following 6 bands: 23-25kDa, 31 kDa (Osp A), the 34 kDa (Osp B), 39 kDa, 41kDa and/or the 83-93 kDa. 31kDa and 34kDa antigens are included to the criteria due to their importance in the recurrent and/or persistent disease period. IGeneX criteria of is 96% specific for exposure to B. burgdorferi.
A positive IgG result with clinical history may be indicative of Lyme disease. Patients with other spirochetal disease and/or who test positive for rheumatoid factor or Epstein Barr virus may have cross-reacting antibodies. A positive response in this, as in any antibody assay, indicates sensitization, not necessarily active disease. 12
Figure 4. Significant antibodies detected by Western Blot (Lane 1 has kDa marker proteins)
Test # 189
Description Lyme IgG Western Blot
Specimen 0.5 ml Serum
Collection & Shipping
Collect in Red top tube, separate serum and send at room temperature.
OR Collect in SST tube, spin and send at room temperature.
CPT CODE: 86617
IgM WESTERN BLOT
The IgM Western Blot is a very sensitive indicator of exposure to B. burgdorferi. It may be positive as early as 1 week after a tick bite. This test will usually remain positive for six to eight weeks after initial exposure. Re-exposure will also cause this test to be positive for a brief period of time. For the testing to be complete, it is preferable that the IgM blot be run along with the IgG blot.
The antibody specificities of importance for the IgM blot are the same as those for the IgG blot. The CDC/ASTPHLD criteria for positive results are 2 of the following 3 antigenic bands: 23-25 kDa (Osp C); 39 kDa; and/or 41 kDa.8,9 IGeneX adds the 31 kDa (Osp A), the 34 kDa (Osp B),10,12 (with the argument that these two antigens were used for the vaccines and therefore, antibodies to these antigens are of importance) and/or the 83-93 kDa to the criteria due to their importance in the recurrent and/or persistent disease period. IGeneX criteria of 2 bands is 96% specific for exposure to B. burgdorferi. Sera from patients with some acute viral infections can give false positive results. Therefore, an IgM viral panel may useful to rule out false positives IgM Western blot results due to viral infection. Note: The IgM Western blot is often positive in patients with persistent infection.6 Sometimes it is the only marker detected.
A positive IgM result with clinical history may be indicative of early Lyme disease or persistent infection in otherwise serologically negative individuals. Recently reported data support our observation that some Lyme patients may have only restricted IgM response to B. burgdorferi.
Test # 188
Description Lyme IgM Western Blot
Specimen 0.5 ml Serum
Collection & Shipping
Collect in Red top tube, separate serum and send at room temperature.
OR Collect in SST tube, spin and send at room temperature.
CPT CODE: 86617
If all of this comes up negative I would start chasing viral possibilities, of which there are several.
If you come up with absolutely nothing after exhausting all of those possibilities and everything that any of your more imaginative doctors come up with (heavy metals, mold, other similarly rare and unlikely options), I would try one empiric trial of minocycline and another with valtrex or valcyte while having CBC and chemistry, liver, kidney, and pancreatic function monitored by a physician (monthly blood test). This kind of self-doctoring would be an absolute last resort and I don't recommend it -- I'm just telling you what I would do.
Good luck!
P.S. do you have any issues with digestion, gut health, etc? I notice you are taking multiple probiotics already and average people do not typically have much interest in probiotics until gut problems strike. It is potentially relevant.
I am also making a basic assumption that you eat a healthy diet rich in fruits and vegetables, and low or zero processed foods, junk food, refined grains, no excessive sugar consumption, no excessive caffeine or other stimulant abuse, get adequate exercise and sleep, etc etc. If any of this is untrue you can put the testing on hold and straighten yourself out first.
Or I could just set an appointment with Dr. House, instead
Thanks for the info. Thanks a lot!
Regarding your questions - no, I don't have any digestion or gut problems. I've started taking probiotics for the reason of general health and longevity... only then I've found that it might be beneficial from my sleepiness problem.
I've found that it is impossible to refrain from processed foods, but I try to eat as less as possible - only whole grain bread, vegetables (a few, but still), no sugars whatsoever unless on special occasions, don't drink coffee. I also exercise regularly. Not as much as in the past but I've suffered from sleepiness even when I was running 8 miles every other day. So that's not the solution.
#39
Posted 16 November 2008 - 01:22 AM
I would hate to watch another person waste years of time and thousands of dollars shooting blindly in the dark.
Too late!
As unfortunate as it is, every inch we gain is done so in a slow and step-wise fashion. When I began my quest, my ADD was SO bad, I could not get past reading the search results after googling, say, "depression". Now I'm able to perform more thorough and analytical research, but it took more than 10 years to get here.
I must say, finding this forum was a Godsend. The amount of info. I've learned on this site has probably saved me another 10 years of research.
#40
Posted 16 November 2008 - 02:41 AM
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