Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 >> Allergic to a lot of foods? Depends on what you mean by allergic. She does not have food allergies as such, but refluxes mightily or has stomach pain at all but a relative handful of things. 95% of this food intolerance started suddenly last Sept and is just part of an overall sudden autonomic nervous system blowout. The things she eats are mostly organic chicken, green vegetables, and nuts. No spices whatsoever. Spring water in glass bottles (there's only one source in the U.S. that we can find). >> Mold in house? Mold was the trigger for her MCS originally, and no there is no chance at all of mold in the house. As I posted in the past -- we have no carpet, have ditched any furnishings or belongings that are even remotely suspicious, and the house just passed several mold tests with flying colors. Besides, she is so reactive to mold, she would know about it immediately. Her reactions to mold toxins (vs VOCs) are pretty distinctive. >> Dental issues? No root canals. Two or three amalgams and a couple of crowns. But she is far too frail to take the chemical / heavy metal hit that would go with remediating them. In fact, she had one amalgam replaced with composite just a couple of months before she took her present nosedive -- it may have even caused it. >> Zithromax? Tolerated well last we checked, but due to impaired detox pathways, her doctor will not embark on a course of any abx, Zithro or otherwise, even though he would very much like to. Because he is pretty sure she would not survive the die off. Her immune system is very easy to get over-activated. Inflammation is very easy to get to a life-threatening level, and she has basically nothing she can tolerate to ease it. Motrin is but a fond memory. Nutritional stuff like Quercetin, is like taking on an elephant with a pea-shooter. >> Garlic pills? No joy. Can't tolerate garlic in any form. >> Recuperation? Takes regularly, tolerated well, somewhat helpful. >> Low stomach acid? No, and recently re-tested for same. She tests for chlamydia pneumonia, mycoplasma hominis, a couple of other mycos, and is inconclusive for Lyme. We don't think there's any question she needs abx, but it is hard to convey how toxic and reactive she is. Her MD calls her a "universal reactor". Three different docs have said frankly that they've never seen a case this bad, or anything close really. The game plan now, such as it is, is to explore what Yasko has to offer. Test results are a month or so away. The idea is to try to finesse broken enzyme pathways so she can detox better, and get her stable enough to start abx. And/or quite possibly do some kind of chelation. There is evidence of PPB and DDT poisoning (grew up on a dairy farm in MI). There are probably some heavy metals too. Probably what happened is she hasn't properly shed environmental toxins in her body in some time, and reached some sort of tipping point last Sept. This caused her autonomic nervous system to become unbalanced, producing violent temperature swings, cardiac symptoms (angina-like pain, fluctuating BP, arrythmia, tachycardia). It caused most of her digestive problems -- probably all related to vagal nerve being messed with. Sleep is totally screwed up and at times non-existent. The list is extensive and frankly I'm not telling you the tenth of it. She is on Atenolol, Pravochol, and sometimes Nitroglycrine just to keep a lid on the cardio syx. Due to the very over the top chemical sensitivity, many medical procedures are just not possible. Anything that can't be done at home, basically. It is difficult to buy and launder clothes. Impossible to be in public places -- even if she were not horizontal much of the time anyway. It's difficult even for me to get out because I come back with various perfumes and VOCs on me. We have a protocol for dealing with all this, but it's time consuming, expensive, and draining. If you have MCS at all, you have some idea. If you don't, you can't possibly imagine. I realize that if we don't do abx, this list doesn't have much to offer. Mostly I'm just trying to stay informed and hope we can do that some day. And I was thinking there was an outside chance someone might have experience with being this blocked / closed down in the detox dept and had found ways around it, enough to take significant abx. --Bob pjeanneus wrote: Bob Grommes wrote: I don't want to make chronic illness more complex. I don't like complexity. In fact I hate it. a Carnes asks: Okay, Bob, what is your game plan at this time for your wife? What have you not tried? Does she have allergic reactions to a lot of foods? How likely is it that you have toxic mold in your house? Does she have dental issues - lots of mercury amalgams, root canals? Has she tried and tolerated Zithromax? Has she tried garlic pills? Has she tried Recuperation? Does she have low stomach acid? What antibiotics has she taken and how did she react to them? The above list is fairly simple, and, depending on the answers, it might suggest a plan of action. a Carnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 Bob, You are impressive, both in your knowledge but especially in your care for your wife. Yes, I have some small understanding of the MCS as I cannot tolerate molds. Okay, one more question, have you considered contacting Dr. Ritchie Shoemaker? Maybe your doctor could have a consult with him to see if he has any ideas. Another doctor would be Dr. Greg Blaney in Vancouver, BC. One more suggestion - share this article on Zithromax with your doctor to see if he thinks it gives enough info to risk trying Zithro (perhaps low dose) for your wife. -a Carnes Azithromycin in Chronic Fatigue Syndrome (CFS) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ an analysis of clinical data Authors: Ruud CW Vermeulen and Hans R Scholte Journal of Translational Medicine 2006, 4:34 doi:10.1186/1479-5876-4-34 Published 15 August 2006 Azithromycin in Chronic Fatigue Syndrome (CFS), an analysis of clinical data Ruud C.W. Vermeulen*1 and Hans R. Scholte2 Address: 1CFS and Pain Research Center Amsterdam, Waalstraat 25-31, 1078 BR Amsterdam, The Netherlands, 2Department of Biochemistry, Erasmus MC-University Medical Center Rotterdam, Rotterdam, The Netherlands. E-mail: Ruud CW Vermeulen* - rv@...; Hans R Scholte h.scholte@.... * Corresponding author Abstract Background: CFS is a clinical state with defined symptoms, but undefined cause. The patients may show a chronic state of immune activation and treatment with an antibiotic in this subgroup has been suggested. Methods: In a retrospective study, the response of CFS patients to azithromycin, an antibiotic and immunomodulating drug, has been scored from the patients records and compared with clinical and laboratory data. Azithromycin was not the first choice therapy, but offered when the effect of counseling and L-carnitine was considered insufficient by the patient and the clinician. Results: Of the 99 patients investigated, 58 reported a decrease in the symptoms by the use of azithromycin. These responding patients had lower levels of plasma acetylcarnitine. Conclusion: The efficacy of azithromycin in the responsive patients could be explained by the modulating effect on a chronic primed state of the immune cells of the brain, or the activated peripheral immune system. Their lower acetylcarnitine levels may reflect a decreased antioxidant defense and/or an increased consumption of acetylcarnitine caused by oxidative stress. Background In 1994 Fukuda et al. [1] defined CFS as a chronic persistent fatigue that is present for over 6 months, is not caused by activity nor alleviated by rest and accompanied with at least 4 other symptoms: cognitive impairment, pain in joints, muscles or head, unrefreshing sleep, soar throat, tender lymph nodes and postexertional malaise with slow recovery. Nevertheless, CFS remained subject to debate and even the mere existence of the syndrome was still questioned by some. The presentation of the results of quantitative morphology of the brain in CFS patients by Okada et al [2], later confirmed by De Lange et al [3] may change this opinion. The loss of grey matter in the brain, especially in Brodmanns area 9, was related to physical impairment, but not to the duration of the symptoms. Although other explanations were considered as well, this may indicate the occurrence of a major trauma to the brain at the start of the disease. This could also explain the low recovery rate in adults, because repair in adult brain is limited [4]. The severity of the sickness, both the symptoms and the lowered adaptation to physical stress, may fluctuate whenever infections and stress come and go. The Th1 to Th2 cytokine shift in CFS patients will make them more vulnerable to infections [5] and it has been suggested that they have more often chronic infections [6-8]. The predisposition for acquiring CFS may be genetically determined [9, 10], the occurrence is influenced by the severity of the immune response [11]. The result is a chronic hyper-oxidative state of sickness [12, 13], in the brain itself [14] that cannot be stopped [15]. Preliminary evidence of a relation between post-infectious fatigue and mitochondrial dysfunction indicates a complex response involving acetylcarnitine [16]. The clinical presentation of the symptoms and chances for recovery will depend on the balance between the irreversible loss of grey cells and activation of the immune system. According to De Meirleir et al, the presence of RNase-L and elastase may offer an indication for this balance [17-19]. Several treatment protocols to counteract the immune activation in CFS were presented [18, 20, 21], but the results were never validated in a double blind study. Such proof is required as a rationale for treatment and provides a basis to understand the pathophysiology of the disease. Comparing the outcome of clinical treatment protocols might add to our knowledge of CFS and its treatment until double blind studies are available [22] . Azithromycin is an antibiotic with immunomodulatory effects [23-25]. This antibiotic has been successfully used during periods of six months of more in other chronic diseases [26-28]. The side-effects are known for long term use and mainly limited to gastro-intestinal cramps. The chances for resistance limit its use to individual patients under close supervision [28]. The drug is relatively inexpensive and extensive laboratory tests for side effects are not necessary. The result of a study in 10 CFS patients during 1 to 2 months was positive [26]. We studied the medical records of CFS patients for clinical and laboratory data related to the outcome of the treatment with azithromycin. > > >> Allergic to a lot of foods? > > Depends on what you mean by allergic. She does not have food allergies > as such, but refluxes mightily or has stomach pain at all but a relative > handful of things. 95% of this food intolerance started suddenly last > Sept and is just part of an overall sudden autonomic nervous system > blowout. The things she eats are mostly organic chicken, green > vegetables, and nuts. No spices whatsoever. Spring water in glass > bottles (there's only one source in the U.S. that we can find). > > >> Mold in house? > > Mold was the trigger for her MCS originally, and no there is no chance > at all of mold in the house. As I posted in the past -- we have no > carpet, have ditched any furnishings or belongings that are even > remotely suspicious, and the house just passed several mold tests with > flying colors. Besides, she is so reactive to mold, she would know > about it immediately. Her reactions to mold toxins (vs VOCs) are pretty > distinctive. > > >> Dental issues? > > No root canals. Two or three amalgams and a couple of crowns. But she > is far too frail to take the chemical / heavy metal hit that would go > with remediating them. In fact, she had one amalgam replaced with > composite just a couple of months before she took her present nosedive > -- it may have even caused it. > > >> Zithromax? > > Tolerated well last we checked, but due to impaired detox pathways, her > doctor will not embark on a course of any abx, Zithro or otherwise, even > though he would very much like to. Because he is pretty sure she would > not survive the die off. Her immune system is very easy to get > over-activated. Inflammation is very easy to get to a life- threatening > level, and she has basically nothing she can tolerate to ease it. > Motrin is but a fond memory. Nutritional stuff like Quercetin, is like > taking on an elephant with a pea-shooter. > > >> Garlic pills? > > No joy. Can't tolerate garlic in any form. > > >> Recuperation? > > Takes regularly, tolerated well, somewhat helpful. > > >> Low stomach acid? > > No, and recently re-tested for same. > > She tests for chlamydia pneumonia, mycoplasma hominis, a couple of other > mycos, and is inconclusive for Lyme. > > We don't think there's any question she needs abx, but it is hard to > convey how toxic and reactive she is. Her MD calls her a " universal > reactor " . Three different docs have said frankly that they've never > seen a case this bad, or anything close really. > > The game plan now, such as it is, is to explore what Yasko has to > offer. Test results are a month or so away. The idea is to try to > finesse broken enzyme pathways so she can detox better, and get her > stable enough to start abx. And/or quite possibly do some kind of > chelation. There is evidence of PPB and DDT poisoning (grew up on a > dairy farm in MI). There are probably some heavy metals too. > > Probably what happened is she hasn't properly shed environmental toxins > in her body in some time, and reached some sort of tipping point last > Sept. This caused her autonomic nervous system to become unbalanced, > producing violent temperature swings, cardiac symptoms (angina-like > pain, fluctuating BP, arrythmia, tachycardia). It caused most of her > digestive problems -- probably all related to vagal nerve being messed > with. Sleep is totally screwed up and at times non-existent. The list > is extensive and frankly I'm not telling you the tenth of it. She is on > Atenolol, Pravochol, and sometimes Nitroglycrine just to keep a lid on > the cardio syx. > > Due to the very over the top chemical sensitivity, many medical > procedures are just not possible. Anything that can't be done at home, > basically. It is difficult to buy and launder clothes. Impossible to > be in public places -- even if she were not horizontal much of the time > anyway. It's difficult even for me to get out because I come back with > various perfumes and VOCs on me. We have a protocol for dealing with > all this, but it's time consuming, expensive, and draining. If you have > MCS at all, you have some idea. If you don't, you can't possibly imagine. > > I realize that if we don't do abx, this list doesn't have much to > offer. Mostly I'm just trying to stay informed and hope we can do that > some day. And I was thinking there was an outside chance someone might > have experience with being this blocked / closed down in the detox dept > and had found ways around it, enough to take significant abx. > > --Bob > > pjeanneus wrote: > > > > Bob Grommes wrote: > > > > I don't want to make chronic illness more complex. I don't like > > complexity. In fact I hate it. > > > > a Carnes asks: > > > > Okay, Bob, what is your game plan at this time for your wife? What > > have you not tried? > > > > Does she have allergic reactions to a lot of foods? > > > > How likely is it that you have toxic mold in your house? > > > > Does she have dental issues - lots of mercury amalgams, root canals? > > > > Has she tried and tolerated Zithromax? > > > > Has she tried garlic pills? > > > > Has she tried Recuperation? > > > > Does she have low stomach acid? > > > > What antibiotics has she taken and how did she react to them? > > > > The above list is fairly simple, and, depending on the answers, it > > might suggest a plan of action. > > > > a Carnes > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Our doctor has consulted with Shoemaker. We tend to regard him as a one-trick pony as everything he wants to do basically boils down to CSM, maybe with Actos. Both make my wife violently ill -- huge immune activation. Oddly, Actos actually makes her worse rather than better, and it's intended to tamp down those blasted cytokines. We are in the Sonoran Desert of Arizona and significant travel is no longer possible, so Shoemaker and Blaney might as well have offices on the moon, in so far as visiting them is concerned. Thank you for the Zithro citation. Zithro is a definite possibility. I'll chase that down. Best, --Bob pjeanneus wrote: Bob, You are impressive, both in your knowledge but especially in your care for your wife. Yes, I have some small understanding of the MCS as I cannot tolerate molds. Okay, one more question, have you considered contacting Dr. Ritchie Shoemaker? Maybe your doctor could have a consult with him to see if he has any ideas. Another doctor would be Dr. Greg Blaney in Vancouver, BC. One more suggestion - share this article on Zithromax with your doctor to see if he thinks it gives enough info to risk trying Zithro (perhaps low dose) for your wife. -a Carnes Azithromycin in Chronic Fatigue Syndrome (CFS) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ an analysis of clinical data Authors: Ruud CW Vermeulen and Hans R Scholte Journal of Translational Medicine 2006, 4:34 doi:10.1186/1479-5876-4-34 Published 15 August 2006 Azithromycin in Chronic Fatigue Syndrome (CFS), an analysis of clinical data Ruud C.W. Vermeulen*1 and Hans R. Scholte2 Address: 1CFS and Pain Research Center Amsterdam, Waalstraat 25-31, 1078 BR Amsterdam, The Netherlands, 2Department of Biochemistry, Erasmus MC-University Medical Center Rotterdam, Rotterdam, The Netherlands. E-mail: Ruud CW Vermeulen* - rvcvscentrum (DOT) nl; Hans R Scholte h.scholteerasmusmc (DOT) nl. * Corresponding author Abstract Background: CFS is a clinical state with defined symptoms, but undefined cause. The patients may show a chronic state of immune activation and treatment with an antibiotic in this subgroup has been suggested. Methods: In a retrospective study, the response of CFS patients to azithromycin, an antibiotic and immunomodulating drug, has been scored from the patients records and compared with clinical and laboratory data. Azithromycin was not the first choice therapy, but offered when the effect of counseling and L-carnitine was considered insufficient by the patient and the clinician. Results: Of the 99 patients investigated, 58 reported a decrease in the symptoms by the use of azithromycin. These responding patients had lower levels of plasma acetylcarnitine. Conclusion: The efficacy of azithromycin in the responsive patients could be explained by the modulating effect on a chronic primed state of the immune cells of the brain, or the activated peripheral immune system. Their lower acetylcarnitine levels may reflect a decreased antioxidant defense and/or an increased consumption of acetylcarnitine caused by oxidative stress. Background In 1994 Fukuda et al. [1] defined CFS as a chronic persistent fatigue that is present for over 6 months, is not caused by activity nor alleviated by rest and accompanied with at least 4 other symptoms: cognitive impairment, pain in joints, muscles or head, unrefreshing sleep, soar throat, tender lymph nodes and postexertional malaise with slow recovery. Nevertheless, CFS remained subject to debate and even the mere existence of the syndrome was still questioned by some. The presentation of the results of quantitative morphology of the brain in CFS patients by Okada et al [2], later confirmed by De Lange et al [3] may change this opinion. The loss of grey matter in the brain, especially in Brodmanns area 9, was related to physical impairment, but not to the duration of the symptoms. Although other explanations were considered as well, this may indicate the occurrence of a major trauma to the brain at the start of the disease. This could also explain the low recovery rate in adults, because repair in adult brain is limited [4]. The severity of the sickness, both the symptoms and the lowered adaptation to physical stress, may fluctuate whenever infections and stress come and go. The Th1 to Th2 cytokine shift in CFS patients will make them more vulnerable to infections [5] and it has been suggested that they have more often chronic infections [6-8]. The predisposition for acquiring CFS may be genetically determined [9, 10], the occurrence is influenced by the severity of the immune response [11]. The result is a chronic hyper-oxidative state of sickness [12, 13], in the brain itself [14] that cannot be stopped [15]. Preliminary evidence of a relation between post-infectious fatigue and mitochondrial dysfunction indicates a complex response involving acetylcarnitine [16]. The clinical presentation of the symptoms and chances for recovery will depend on the balance between the irreversible loss of grey cells and activation of the immune system. According to De Meirleir et al, the presence of RNase-L and elastase may offer an indication for this balance [17-19]. Several treatment protocols to counteract the immune activation in CFS were presented [18, 20, 21], but the results were never validated in a double blind study. Such proof is required as a rationale for treatment and provides a basis to understand the pathophysiology of the disease. Comparing the outcome of clinical treatment protocols might add to our knowledge of CFS and its treatment until double blind studies are available [22] . Azithromycin is an antibiotic with immunomodulatory effects [23-25]. This antibiotic has been successfully used during periods of six months of more in other chronic diseases [26-28]. The side-effects are known for long term use and mainly limited to gastro-intestinal cramps. The chances for resistance limit its use to individual patients under close supervision [28]. The drug is relatively inexpensive and extensive laboratory tests for side effects are not necessary. The result of a study in 10 CFS patients during 1 to 2 months was positive [26]. We studied the medical records of CFS patients for clinical and laboratory data related to the outcome of the treatment with azithromycin. > > >> Allergic to a lot of foods? > > Depends on what you mean by allergic. She does not have food allergies > as such, but refluxes mightily or has stomach pain at all but a relative > handful of things. 95% of this food intolerance started suddenly last > Sept and is just part of an overall sudden autonomic nervous system > blowout. The things she eats are mostly organic chicken, green > vegetables, and nuts. No spices whatsoever. Spring water in glass > bottles (there's only one source in the U.S. that we can find). > > >> Mold in house? > > Mold was the trigger for her MCS originally, and no there is no chance > at all of mold in the house. As I posted in the past -- we have no > carpet, have ditched any furnishings or belongings that are even > remotely suspicious, and the house just passed several mold tests with > flying colors. Besides, she is so reactive to mold, she would know > about it immediately. Her reactions to mold toxins (vs VOCs) are pretty > distinctive. > > >> Dental issues? > > No root canals. Two or three amalgams and a couple of crowns. But she > is far too frail to take the chemical / heavy metal hit that would go > with remediating them. In fact, she had one amalgam replaced with > composite just a couple of months before she took her present nosedive > -- it may have even caused it. > > >> Zithromax? > > Tolerated well last we checked, but due to impaired detox pathways, her > doctor will not embark on a course of any abx, Zithro or otherwise, even > though he would very much like to. Because he is pretty sure she would > not survive the die off. Her immune system is very easy to get > over-activated. Inflammation is very easy to get to a life- threatening > level, and she has basically nothing she can tolerate to ease it. > Motrin is but a fond memory. Nutritional stuff like Quercetin, is like > taking on an elephant with a pea-shooter. > > >> Garlic pills? > > No joy. Can't tolerate garlic in any form. > > >> Recuperation? > > Takes regularly, tolerated well, somewhat helpful. > > >> Low stomach acid? > > No, and recently re-tested for same. > > She tests for chlamydia pneumonia, mycoplasma hominis, a couple of other > mycos, and is inconclusive for Lyme. > > We don't think there's any question she needs abx, but it is hard to > convey how toxic and reactive she is. Her MD calls her a "universal > reactor". Three different docs have said frankly that they've never > seen a case this bad, or anything close really. > > The game plan now, such as it is, is to explore what Yasko has to > offer. Test results are a month or so away. The idea is to try to > finesse broken enzyme pathways so she can detox better, and get her > stable enough to start abx. And/or quite possibly do some kind of > chelation. There is evidence of PPB and DDT poisoning (grew up on a > dairy farm in MI). There are probably some heavy metals too. > > Probably what happened is she hasn't properly shed environmental toxins > in her body in some time, and reached some sort of tipping point last > Sept. This caused her autonomic nervous system to become unbalanced, > producing violent temperature swings, cardiac symptoms (angina-like > pain, fluctuating BP, arrythmia, tachycardia). It caused most of her > digestive problems -- probably all related to vagal nerve being messed > with. Sleep is totally screwed up and at times non-existent. The list > is extensive and frankly I'm not telling you the tenth of it. She is on > Atenolol, Pravochol, and sometimes Nitroglycrine just to keep a lid on > the cardio syx. > > Due to the very over the top chemical sensitivity, many medical > procedures are just not possible. Anything that can't be done at home, > basically. It is difficult to buy and launder clothes. Impossible to > be in public places -- even if she were not horizontal much of the time > anyway. It's difficult even for me to get out because I come back with > various perfumes and VOCs on me. We have a protocol for dealing with > all this, but it's time consuming, expensive, and draining. If you have > MCS at all, you have some idea. If you don't, you can't possibly imagine. > > I realize that if we don't do abx, this list doesn't have much to > offer. Mostly I'm just trying to stay informed and hope we can do that > some day. And I was thinking there was an outside chance someone might > have experience with being this blocked / closed down in the detox dept > and had found ways around it, enough to take significant abx. > > --Bob > > pjeanneus wrote: > > > > Bob Grommes wrote: > > > > I don't want to make chronic illness more complex. I don't like > > complexity. In fact I hate it. > > > > a Carnes asks: > > > > Okay, Bob, what is your game plan at this time for your wife? What > > have you not tried? > > > > Does she have allergic reactions to a lot of foods? > > > > How likely is it that you have toxic mold in your house? > > > > Does she have dental issues - lots of mercury amalgams, root canals? > > > > Has she tried and tolerated Zithromax? > > > > Has she tried garlic pills? > > > > Has she tried Recuperation? > > > > Does she have low stomach acid? > > > > What antibiotics has she taken and how did she react to them? > > > > The above list is fairly simple, and, depending on the answers, it > > might suggest a plan of action. > > > > a Carnes > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Actos made me very sick as well. And it took me 2 weeks to recover. Very bad effect. pennyBob Grommes <bob@...> wrote: Our doctor has consulted with Shoemaker. We tend to regard him as a one-trick pony as everything he wants to do basically boils down to CSM, maybe with Actos. Both make my wife violently ill -- huge immune activation. Oddly, Actos actually makes her worse rather than better, and it's intended to tamp down those blasted cytokines.We are in the Sonoran Desert of Arizona and significant travel is no longer possible, so Shoemaker and Blaney might as well have offices on the moon, in so far as visiting them is concerned.Thank you for the Zithro citation. Zithro is a definite possibility. I'll chase that down.Best,--Bobpjeanneus wrote: Bob,You are impressive, both in your knowledge but especially in your care for your wife. Yes, I have some small understanding of the MCS as I cannot tolerate molds. Okay, one more question, have you considered contacting Dr. Ritchie Shoemaker? Maybe your doctor could have a consult with him to see if he has any ideas. Another doctor would be Dr. Greg Blaney in Vancouver, BC.One more suggestion - share this article on Zithromax with your doctor to see if he thinks it gives enough info to risk trying Zithro (perhaps low dose) for your wife. -a CarnesAzithromycin in Chronic Fatigue Syndrome (CFS)~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~an analysis of clinical dataAuthors: Ruud CW Vermeulen and Hans R ScholteJournal of Translational Medicine 2006, 4:34 doi:10.1186/1479-5876-4-34Published 15 August 2006 Azithromycin in Chronic Fatigue Syndrome (CFS), an analysis of clinical data Ruud C.W. Vermeulen*1 and Hans R. Scholte2 Address: 1CFS and Pain Research Center Amsterdam, Waalstraat 25-31, 1078 BR Amsterdam, The Netherlands, 2Department of Biochemistry, Erasmus MC-University Medical Center Rotterdam, Rotterdam, The Netherlands. E-mail: Ruud CW Vermeulen* - rvcvscentrum (DOT) nl; Hans R Scholte h.scholteerasmusmc (DOT) nl. * Corresponding author AbstractBackground: CFS is a clinical state with defined symptoms, but undefined cause. The patients may show a chronic state of immune activation and treatment with an antibiotic in this subgroup has been suggested.Methods:In a retrospective study, the response of CFS patients to azithromycin, an antibiotic and immunomodulating drug, has been scored from the patients records and compared with clinical and laboratory data. Azithromycin was not the first choice therapy, but offered when the effect of counseling and L-carnitine was considered insufficient by the patient and the clinician.Results:Of the 99 patients investigated, 58 reported a decrease in the symptoms by the use of azithromycin. These responding patients had lower levels of plasma acetylcarnitine.Conclusion:The efficacy of azithromycin in the responsive patients could be explained by the modulating effect on a chronic primed state of the immune cells of the brain, or the activated peripheral immune system. Their lower acetylcarnitine levels may reflect a decreased antioxidant defense and/or an increased consumption of acetylcarnitine caused by oxidative stress.BackgroundIn 1994 Fukuda et al. [1] defined CFS as a chronic persistent fatigue that is present for over 6 months, is not caused by activity nor alleviated by rest and accompanied with at least 4 other symptoms: cognitive impairment, pain in joints, muscles or head, unrefreshing sleep, soar throat, tender lymph nodes and postexertional malaise with slow recovery. Nevertheless, CFS remained subject to debate and even the mere existence of the syndrome was still questioned by some. The presentation of the results of quantitative morphology of the brain in CFS patients by Okada et al [2], later confirmed by De Lange et al [3] may change this opinion. The loss of grey matter in the brain, especially in Brodmanns area 9, was related to physical impairment, but not to the duration of the symptoms. Although other explanations were considered as well, this may indicate the occurrence of a major trauma to the brain at the start of the disease. This could also explain the low recovery rate in adults, because repair in adult brain is limited [4].The severity of the sickness, both the symptoms and the lowered adaptation to physical stress, may fluctuate whenever infections and stress come and go. The Th1 to Th2 cytokine shift in CFS patients will make them more vulnerable to infections [5] and it has been suggested that they have more often chronic infections [6-8]. The predisposition for acquiring CFS may be genetically determined [9, 10], the occurrence is influenced by the severity of the immune response [11]. The result is a chronic hyper-oxidative state of sickness [12, 13], in the brain itself [14] that cannot be stopped [15]. Preliminary evidence of a relation between post-infectious fatigue and mitochondrial dysfunction indicates a complex response involving acetylcarnitine [16].The clinical presentation of the symptoms and chances for recovery will depend on the balance between the irreversible loss of grey cells and activation of the immune system. According to De Meirleir et al, the presence of RNase-L and elastase may offer an indication for this balance [17-19]. Several treatment protocols to counteract the immune activation in CFS were presented [18, 20, 21], but the results were never validated in a double blind study. Such proof is required as a rationale for treatment and provides a basis to understand the pathophysiology of the disease. Comparing the outcome of clinical treatment protocols might add to our knowledge of CFS and its treatment until double blind studies are available [22] .Azithromycin is an antibiotic with immunomodulatory effects [23-25]. This antibiotic has been successfully used during periods of six months of more in other chronic diseases [26-28]. The side-effects are known for long term use and mainly limited to gastro-intestinal cramps. The chances for resistance limit its use to individual patients under close supervision [28]. The drug is relatively inexpensive and extensive laboratory tests for side effects are not necessary. The result of a study in 10 CFS patients during 1 to 2 months was positive [26]. We studied the medical records of CFS patients for clinical and laboratory data related to the outcome of the treatment with azithromycin.>> >> Allergic to a lot of foods?> > Depends on what you mean by allergic. She does not have food allergies > as such, but refluxes mightily or has stomach pain at all but a relative > handful of things. 95% of this food intolerance started suddenly last > Sept and is just part of an overall sudden autonomic nervous system > blowout. The things she eats are mostly organic chicken, green > vegetables, and nuts. No spices whatsoever. Spring water in glass > bottles (there's only one source in the U.S. that we can find).> > >> Mold in house?> > Mold was the trigger for her MCS originally, and no there is no chance > at all of mold in the house. As I posted in the past -- we have no > carpet, have ditched any furnishings or belongings that are even > remotely suspicious, and the house just passed several mold tests with > flying colors. Besides, she is so reactive to mold, she would know > about it immediately. Her reactions to mold toxins (vs VOCs) are pretty > distinctive.> > >> Dental issues?> > No root canals. Two or three amalgams and a couple of crowns. But she > is far too frail to take the chemical / heavy metal hit that would go > with remediating them. In fact, she had one amalgam replaced with > composite just a couple of months before she took her present nosedive > -- it may have even caused it.> > >> Zithromax?> > Tolerated well last we checked, but due to impaired detox pathways, her > doctor will not embark on a course of any abx, Zithro or otherwise, even > though he would very much like to. Because he is pretty sure she would > not survive the die off. Her immune system is very easy to get > over-activated. Inflammation is very easy to get to a life-threatening > level, and she has basically nothing she can tolerate to ease it. > Motrin is but a fond memory. Nutritional stuff like Quercetin, is like > taking on an elephant with a pea-shooter.> > >> Garlic pills?> > No joy. Can't tolerate garlic in any form.> > >> Recuperation?> > Takes regularly, tolerated well, somewhat helpful.> > >> Low stomach acid?> > No, and recently re-tested for same.> > She tests for chlamydia pneumonia, mycoplasma hominis, a couple of other > mycos, and is inconclusive for Lyme.> > We don't think there's any question she needs abx, but it is hard to > convey how toxic and reactive she is. Her MD calls her a "universal > reactor". Three different docs have said frankly that they've never > seen a case this bad, or anything close really.> > The game plan now, such as it is, is to explore what Yasko has to > offer. Test results are a month or so away. The idea is to try to > finesse broken enzyme pathways so she can detox better, and get her > stable enough to start abx. And/or quite possibly do some kind of > chelation. There is evidence of PPB and DDT poisoning (grew up on a > dairy farm in MI). There are probably some heavy metals too.> > Probably what happened is she hasn't properly shed environmental toxins > in her body in some time, and reached some sort of tipping point last > Sept. This caused her autonomic nervous system to become unbalanced, > producing violent temperature swings, cardiac symptoms (angina-like > pain, fluctuating BP, arrythmia, tachycardia). It caused most of her > digestive problems -- probably all related to vagal nerve being messed > with. Sleep is totally screwed up and at times non-existent. The list > is extensive and frankly I'm not telling you the tenth of it. She is on > Atenolol, Pravochol, and sometimes Nitroglycrine just to keep a lid on > the cardio syx.> > Due to the very over the top chemical sensitivity, many medical > procedures are just not possible. Anything that can't be done at home, > basically. It is difficult to buy and launder clothes. Impossible to > be in public places -- even if she were not horizontal much of the time > anyway. It's difficult even for me to get out because I come back with > various perfumes and VOCs on me. We have a protocol for dealing with > all this, but it's time consuming, expensive, and draining. If you have > MCS at all, you have some idea. If you don't, you can't possibly imagine.> > I realize that if we don't do abx, this list doesn't have much to > offer. Mostly I'm just trying to stay informed and hope we can do that > some day. And I was thinking there was an outside chance someone might > have experience with being this blocked / closed down in the detox dept > and had found ways around it, enough to take significant abx.> > --Bob> > pjeanneus wrote:> >> > Bob Grommes wrote:> >> > I don't want to make chronic illness more complex. I don't like> > complexity. In fact I hate it.> >> > a Carnes asks:> >> > Okay, Bob, what is your game plan at this time for your wife? What> > have you not tried?> >> > Does she have allergic reactions to a lot of foods?> >> > How likely is it that you have toxic mold in your house?> >> > Does she have dental issues - lots of mercury amalgams, root canals?> >> > Has she tried and tolerated Zithromax?> >> > Has she tried garlic pills?> >> > Has she tried Recuperation?> >> > Does she have low stomach acid?> >> > What antibiotics has she taken and how did she react to them?> >> > The above list is fairly simple, and, depending on the answers, it> > might suggest a plan of action.> >> > a Carnes> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 May I ask ... was it a cytonkine flare or something else? I think my wife spent a couple of weeks getting over that too ... --Bob Penny Houle wrote: Actos made me very sick as well. And it took me 2 weeks to recover. Very bad effect. penny Bob Grommes <bobbobgrommes> wrote: Our doctor has consulted with Shoemaker. We tend to regard him as a one-trick pony as everything he wants to do basically boils down to CSM, maybe with Actos. Both make my wife violently ill -- huge immune activation. Oddly, Actos actually makes her worse rather than better, and it's intended to tamp down those blasted cytokines. We are in the Sonoran Desert of Arizona and significant travel is no longer possible, so Shoemaker and Blaney might as well have offices on the moon, in so far as visiting them is concerned. Thank you for the Zithro citation. Zithro is a definite possibility. I'll chase that down. Best, --Bob pjeanneus wrote: Bob, You are impressive, both in your knowledge but especially in your care for your wife. Yes, I have some small understanding of the MCS as I cannot tolerate molds. Okay, one more question, have you considered contacting Dr. Ritchie Shoemaker? Maybe your doctor could have a consult with him to see if he has any ideas. Another doctor would be Dr. Greg Blaney in Vancouver, BC. One more suggestion - share this article on Zithromax with your doctor to see if he thinks it gives enough info to risk trying Zithro (perhaps low dose) for your wife. -a Carnes Azithromycin in Chronic Fatigue Syndrome (CFS) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ an analysis of clinical data Authors: Ruud CW Vermeulen and Hans R Scholte Journal of Translational Medicine 2006, 4:34 doi:10.1186/1479-5876-4-34 Published 15 August 2006 Azithromycin in Chronic Fatigue Syndrome (CFS), an analysis of clinical data Ruud C.W. Vermeulen*1 and Hans R. Scholte2 Address: 1CFS and Pain Research Center Amsterdam, Waalstraat 25-31, 1078 BR Amsterdam, The Netherlands, 2Department of Biochemistry, Erasmus MC-University Medical Center Rotterdam, Rotterdam, The Netherlands. E-mail: Ruud CW Vermeulen* - rvcvscentrum (DOT) nl; Hans R Scholte h.scholteerasmusmc (DOT) nl. * Corresponding author Abstract Background: CFS is a clinical state with defined symptoms, but undefined cause. The patients may show a chronic state of immune activation and treatment with an antibiotic in this subgroup has been suggested. Methods: In a retrospective study, the response of CFS patients to azithromycin, an antibiotic and immunomodulating drug, has been scored from the patients records and compared with clinical and laboratory data. Azithromycin was not the first choice therapy, but offered when the effect of counseling and L-carnitine was considered insufficient by the patient and the clinician. Results: Of the 99 patients investigated, 58 reported a decrease in the symptoms by the use of azithromycin. These responding patients had lower levels of plasma acetylcarnitine. Conclusion: The efficacy of azithromycin in the responsive patients could be explained by the modulating effect on a chronic primed state of the immune cells of the brain, or the activated peripheral immune system. Their lower acetylcarnitine levels may reflect a decreased antioxidant defense and/or an increased consumption of acetylcarnitine caused by oxidative stress. Background In 1994 Fukuda et al. [1] defined CFS as a chronic persistent fatigue that is present for over 6 months, is not caused by activity nor alleviated by rest and accompanied with at least 4 other symptoms: cognitive impairment, pain in joints, muscles or head, unrefreshing sleep, soar throat, tender lymph nodes and postexertional malaise with slow recovery. Nevertheless, CFS remained subject to debate and even the mere existence of the syndrome was still questioned by some. The presentation of the results of quantitative morphology of the brain in CFS patients by Okada et al [2], later confirmed by De Lange et al [3] may change this opinion. The loss of grey matter in the brain, especially in Brodmanns area 9, was related to physical impairment, but not to the duration of the symptoms. Although other explanations were considered as well, this may indicate the occurrence of a major trauma to the brain at the start of the disease. This could also explain the low recovery rate in adults, because repair in adult brain is limited [4]. The severity of the sickness, both the symptoms and the lowered adaptation to physical stress, may fluctuate whenever infections and stress come and go. The Th1 to Th2 cytokine shift in CFS patients will make them more vulnerable to infections [5] and it has been suggested that they have more often chronic infections [6-8]. The predisposition for acquiring CFS may be genetically determined [9, 10], the occurrence is influenced by the severity of the immune response [11]. The result is a chronic hyper-oxidative state of sickness [12, 13], in the brain itself [14] that cannot be stopped [15]. Preliminary evidence of a relation between post-infectious fatigue and mitochondrial dysfunction indicates a complex response involving acetylcarnitine [16]. The clinical presentation of the symptoms and chances for recovery will depend on the balance between the irreversible loss of grey cells and activation of the immune system. According to De Meirleir et al, the presence of RNase-L and elastase may offer an indication for this balance [17-19]. Several treatment protocols to counteract the immune activation in CFS were presented [18, 20, 21], but the results were never validated in a double blind study. Such proof is required as a rationale for treatment and provides a basis to understand the pathophysiology of the disease. Comparing the outcome of clinical treatment protocols might add to our knowledge of CFS and its treatment until double blind studies are available [22] . Azithromycin is an antibiotic with immunomodulatory effects [23-25]. This antibiotic has been successfully used during periods of six months of more in other chronic diseases [26-28]. The side-effects are known for long term use and mainly limited to gastro-intestinal cramps. The chances for resistance limit its use to individual patients under close supervision [28]. The drug is relatively inexpensive and extensive laboratory tests for side effects are not necessary. The result of a study in 10 CFS patients during 1 to 2 months was positive [26]. We studied the medical records of CFS patients for clinical and laboratory data related to the outcome of the treatment with azithromycin. > > >> Allergic to a lot of foods? > > Depends on what you mean by allergic. She does not have food allergies > as such, but refluxes mightily or has stomach pain at all but a relative > handful of things. 95% of this food intolerance started suddenly last > Sept and is just part of an overall sudden autonomic nervous system > blowout. The things she eats are mostly organic chicken, green > vegetables, and nuts. No spices whatsoever. Spring water in glass > bottles (there's only one source in the U.S. that we can find). > > >> Mold in house? > > Mold was the trigger for her MCS originally, and no there is no chance > at all of mold in the house. As I posted in the past -- we have no > carpet, have ditched any furnishings or belongings that are even > remotely suspicious, and the house just passed several mold tests with > flying colors. Besides, she is so reactive to mold, she would know > about it immediately. Her reactions to mold toxins (vs VOCs) are pretty > distinctive. > > >> Dental issues? > > No root canals. Two or three amalgams and a couple of crowns. But she > is far too frail to take the chemical / heavy metal hit that would go > with remediating them. In fact, she had one amalgam replaced with > composite just a couple of months before she took her present nosedive > -- it may have even caused it. > > >> Zithromax? > > Tolerated well last we checked, but due to impaired detox pathways, her > doctor will not embark on a course of any abx, Zithro or otherwise, even > though he would very much like to. Because he is pretty sure she would > not survive the die off. Her immune system is very easy to get > over-activated. Inflammation is very easy to get to a life- threatening > level, and she has basically nothing she can tolerate to ease it. > Motrin is but a fond memory. Nutritional stuff like Quercetin, is like > taking on an elephant with a pea-shooter. > > >> Garlic pills? > > No joy. Can't tolerate garlic in any form. > > >> Recuperation? > > Takes regularly, tolerated well, somewhat helpful. > > >> Low stomach acid? > > No, and recently re-tested for same. > > She tests for chlamydia pneumonia, mycoplasma hominis, a couple of other > mycos, and is inconclusive for Lyme. > > We don't think there's any question she needs abx, but it is hard to > convey how toxic and reactive she is. Her MD calls her a "universal > reactor". Three different docs have said frankly that they've never > seen a case this bad, or anything close really. > > The game plan now, such as it is, is to explore what Yasko has to > offer. Test results are a month or so away. The idea is to try to > finesse broken enzyme pathways so she can detox better, and get her > stable enough to start abx. And/or quite possibly do some kind of > chelation. There is evidence of PPB and DDT poisoning (grew up on a > dairy farm in MI). There are probably some heavy metals too. > > Probably what happened is she hasn't properly shed environmental toxins > in her body in some time, and reached some sort of tipping point last > Sept. This caused her autonomic nervous system to become unbalanced, > producing violent temperature swings, cardiac symptoms (angina-like > pain, fluctuating BP, arrythmia, tachycardia). It caused most of her > digestive problems -- probably all related to vagal nerve being messed > with. Sleep is totally screwed up and at times non-existent. The list > is extensive and frankly I'm not telling you the tenth of it. She is on > Atenolol, Pravochol, and sometimes Nitroglycrine just to keep a lid on > the cardio syx. > > Due to the very over the top chemical sensitivity, many medical > procedures are just not possible. Anything that can't be done at home, > basically. It is difficult to buy and launder clothes. Impossible to > be in public places -- even if she were not horizontal much of the time > anyway. It's difficult even for me to get out because I come back with > various perfumes and VOCs on me. We have a protocol for dealing with > all this, but it's time consuming, expensive, and draining. If you have > MCS at all, you have some idea. If you don't, you can't possibly imagine. > > I realize that if we don't do abx, this list doesn't have much to > offer. Mostly I'm just trying to stay informed and hope we can do that > some day. And I was thinking there was an outside chance someone might > have experience with being this blocked / closed down in the detox dept > and had found ways around it, enough to take significant abx. > > --Bob > > pjeanneus wrote: > > > > Bob Grommes wrote: > > > > I don't want to make chronic illness more complex. I don't like > > complexity. In fact I hate it. > > > > a Carnes asks: > > > > Okay, Bob, what is your game plan at this time for your wife? What > > have you not tried? > > > > Does she have allergic reactions to a lot of foods? > > > > How likely is it that you have toxic mold in your house? > > > > Does she have dental issues - lots of mercury amalgams, root canals? > > > > Has she tried and tolerated Zithromax? > > > > Has she tried garlic pills? > > > > Has she tried Recuperation? > > > > Does she have low stomach acid? > > > > What antibiotics has she taken and how did she react to them? > > > > The above list is fairly simple, and, depending on the answers, it > > might suggest a plan of action. > > > > a Carnes > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 I don't remember, but after doing some googling, read that some people will react that way. I think it's more of a hormonal/ blood sugar kind of thing, but really can't recall. don't think it's cytokines. Just knew I'd never use that stuff again because it knocked me on my butt. I still have a huge box of it, for some reason my doc gave me a boatload of samples. :-) pennyBob Grommes <bob@...> wrote: May I ask ... was it a cytonkine flare or something else?I think my wife spent a couple of weeks getting over that too ...--BobPenny Houle wrote: Actos made me very sick as well. And it took me 2 weeks to recover. Very bad effect. pennyBob Grommes <bobbobgrommes> wrote: Our doctor has consulted with Shoemaker. We tend to regard him as a one-trick pony as everything he wants to do basically boils down to CSM, maybe with Actos. Both make my wife violently ill -- huge immune activation. Oddly, Actos actually makes her worse rather than better, and it's intended to tamp down those blasted cytokines.We are in the Sonoran Desert of Arizona and significant travel is no longer possible, so Shoemaker and Blaney might as well have offices on the moon, in so far as visiting them is concerned.Thank you for the Zithro citation. Zithro is a definite possibility. I'll chase that down.Best,--Bobpjeanneus wrote: Bob,You are impressive, both in your knowledge but especially in your care for your wife. Yes, I have some small understanding of the MCS as I cannot tolerate molds. Okay, one more question, have you considered contacting Dr. Ritchie Shoemaker? Maybe your doctor could have a consult with him to see if he has any ideas. Another doctor would be Dr. Greg Blaney in Vancouver, BC.One more suggestion - share this article on Zithromax with your doctor to see if he thinks it gives enough info to risk trying Zithro (perhaps low dose) for your wife. -a CarnesAzithromycin in Chronic Fatigue Syndrome (CFS)~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~an analysis of clinical dataAuthors: Ruud CW Vermeulen and Hans R ScholteJournal of Translational Medicine 2006, 4:34 doi:10.1186/1479-5876-4-34Published 15 August 2006 Azithromycin in Chronic Fatigue Syndrome (CFS), an analysis of clinical data Ruud C.W. Vermeulen*1 and Hans R. Scholte2 Address: 1CFS and Pain Research Center Amsterdam, Waalstraat 25-31, 1078 BR Amsterdam, The Netherlands, 2Department of Biochemistry, Erasmus MC-University Medical Center Rotterdam, Rotterdam, The Netherlands. E-mail: Ruud CW Vermeulen* - rvcvscentrum (DOT) nl; Hans R Scholte h.scholteerasmusmc (DOT) nl. * Corresponding author AbstractBackground: CFS is a clinical state with defined symptoms, but undefined cause. The patients may show a chronic state of immune activation and treatment with an antibiotic in this subgroup has been suggested.Methods:In a retrospective study, the response of CFS patients to azithromycin, an antibiotic and immunomodulating drug, has been scored from the patients records and compared with clinical and laboratory data. Azithromycin was not the first choice therapy, but offered when the effect of counseling and L-carnitine was considered insufficient by the patient and the clinician.Results:Of the 99 patients investigated, 58 reported a decrease in the symptoms by the use of azithromycin. These responding patients had lower levels of plasma acetylcarnitine.Conclusion:The efficacy of azithromycin in the responsive patients could be explained by the modulating effect on a chronic primed state of the immune cells of the brain, or the activated peripheral immune system. Their lower acetylcarnitine levels may reflect a decreased antioxidant defense and/or an increased consumption of acetylcarnitine caused by oxidative stress.BackgroundIn 1994 Fukuda et al. [1] defined CFS as a chronic persistent fatigue that is present for over 6 months, is not caused by activity nor alleviated by rest and accompanied with at least 4 other symptoms: cognitive impairment, pain in joints, muscles or head, unrefreshing sleep, soar throat, tender lymph nodes and postexertional malaise with slow recovery. Nevertheless, CFS remained subject to debate and even the mere existence of the syndrome was still questioned by some. The presentation of the results of quantitative morphology of the brain in CFS patients by Okada et al [2], later confirmed by De Lange et al [3] may change this opinion. The loss of grey matter in the brain, especially in Brodmanns area 9, was related to physical impairment, but not to the duration of the symptoms. Although other explanations were considered as well, this may indicate the occurrence of a major trauma to the brain at the start of the disease. This could also explain the low recovery rate in adults, because repair in adult brain is limited [4].The severity of the sickness, both the symptoms and the lowered adaptation to physical stress, may fluctuate whenever infections and stress come and go. The Th1 to Th2 cytokine shift in CFS patients will make them more vulnerable to infections [5] and it has been suggested that they have more often chronic infections [6-8]. The predisposition for acquiring CFS may be genetically determined [9, 10], the occurrence is influenced by the severity of the immune response [11]. The result is a chronic hyper-oxidative state of sickness [12, 13], in the brain itself [14] that cannot be stopped [15]. Preliminary evidence of a relation between post-infectious fatigue and mitochondrial dysfunction indicates a complex response involving acetylcarnitine [16].The clinical presentation of the symptoms and chances for recovery will depend on the balance between the irreversible loss of grey cells and activation of the immune system. According to De Meirleir et al, the presence of RNase-L and elastase may offer an indication for this balance [17-19]. Several treatment protocols to counteract the immune activation in CFS were presented [18, 20, 21], but the results were never validated in a double blind study. Such proof is required as a rationale for treatment and provides a basis to understand the pathophysiology of the disease. Comparing the outcome of clinical treatment protocols might add to our knowledge of CFS and its treatment until double blind studies are available [22] .Azithromycin is an antibiotic with immunomodulatory effects [23-25]. This antibiotic has been successfully used during periods of six months of more in other chronic diseases [26-28]. The side-effects are known for long term use and mainly limited to gastro-intestinal cramps. The chances for resistance limit its use to individual patients under close supervision [28]. The drug is relatively inexpensive and extensive laboratory tests for side effects are not necessary. The result of a study in 10 CFS patients during 1 to 2 months was positive [26]. We studied the medical records of CFS patients for clinical and laboratory data related to the outcome of the treatment with azithromycin.>> >> Allergic to a lot of foods?> > Depends on what you mean by allergic. She does not have food allergies > as such, but refluxes mightily or has stomach pain at all but a relative > handful of things. 95% of this food intolerance started suddenly last > Sept and is just part of an overall sudden autonomic nervous system > blowout. The things she eats are mostly organic chicken, green > vegetables, and nuts. No spices whatsoever. Spring water in glass > bottles (there's only one source in the U.S. that we can find).> > >> Mold in house?> > Mold was the trigger for her MCS originally, and no there is no chance > at all of mold in the house. As I posted in the past -- we have no > carpet, have ditched any furnishings or belongings that are even > remotely suspicious, and the house just passed several mold tests with > flying colors. Besides, she is so reactive to mold, she would know > about it immediately. Her reactions to mold toxins (vs VOCs) are pretty > distinctive.> > >> Dental issues?> > No root canals. Two or three amalgams and a couple of crowns. But she > is far too frail to take the chemical / heavy metal hit that would go > with remediating them. In fact, she had one amalgam replaced with > composite just a couple of months before she took her present nosedive > -- it may have even caused it.> > >> Zithromax?> > Tolerated well last we checked, but due to impaired detox pathways, her > doctor will not embark on a course of any abx, Zithro or otherwise, even > though he would very much like to. Because he is pretty sure she would > not survive the die off. Her immune system is very easy to get > over-activated. Inflammation is very easy to get to a life-threatening > level, and she has basically nothing she can tolerate to ease it. > Motrin is but a fond memory. Nutritional stuff like Quercetin, is like > taking on an elephant with a pea-shooter.> > >> Garlic pills?> > No joy. Can't tolerate garlic in any form.> > >> Recuperation?> > Takes regularly, tolerated well, somewhat helpful.> > >> Low stomach acid?> > No, and recently re-tested for same.> > She tests for chlamydia pneumonia, mycoplasma hominis, a couple of other > mycos, and is inconclusive for Lyme.> > We don't think there's any question she needs abx, but it is hard to > convey how toxic and reactive she is. Her MD calls her a "universal > reactor". Three different docs have said frankly that they've never > seen a case this bad, or anything close really.> > The game plan now, such as it is, is to explore what Yasko has to > offer. Test results are a month or so away. The idea is to try to > finesse broken enzyme pathways so she can detox better, and get her > stable enough to start abx. And/or quite possibly do some kind of > chelation. There is evidence of PPB and DDT poisoning (grew up on a > dairy farm in MI). There are probably some heavy metals too.> > Probably what happened is she hasn't properly shed environmental toxins > in her body in some time, and reached some sort of tipping point last > Sept. This caused her autonomic nervous system to become unbalanced, > producing violent temperature swings, cardiac symptoms (angina-like > pain, fluctuating BP, arrythmia, tachycardia). It caused most of her > digestive problems -- probably all related to vagal nerve being messed > with. Sleep is totally screwed up and at times non-existent. The list > is extensive and frankly I'm not telling you the tenth of it. She is on > Atenolol, Pravochol, and sometimes Nitroglycrine just to keep a lid on > the cardio syx.> > Due to the very over the top chemical sensitivity, many medical > procedures are just not possible. Anything that can't be done at home, > basically. It is difficult to buy and launder clothes. Impossible to > be in public places -- even if she were not horizontal much of the time > anyway. It's difficult even for me to get out because I come back with > various perfumes and VOCs on me. We have a protocol for dealing with > all this, but it's time consuming, expensive, and draining. If you have > MCS at all, you have some idea. If you don't, you can't possibly imagine.> > I realize that if we don't do abx, this list doesn't have much to > offer. Mostly I'm just trying to stay informed and hope we can do that > some day. And I was thinking there was an outside chance someone might > have experience with being this blocked / closed down in the detox dept > and had found ways around it, enough to take significant abx.> > --Bob> > pjeanneus wrote:> >> > Bob Grommes wrote:> >> > I don't want to make chronic illness more complex. I don't like> > complexity. In fact I hate it.> >> > a Carnes asks:> >> > Okay, Bob, what is your game plan at this time for your wife? What> > have you not tried?> >> > Does she have allergic reactions to a lot of foods?> >> > How likely is it that you have toxic mold in your house?> >> > Does she have dental issues - lots of mercury amalgams, root canals?> >> > Has she tried and tolerated Zithromax?> >> > Has she tried garlic pills?> >> > Has she tried Recuperation?> >> > Does she have low stomach acid?> >> > What antibiotics has she taken and how did she react to them?> >> > The above list is fairly simple, and, depending on the answers, it> > might suggest a plan of action.> >> > a Carnes> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2006 Report Share Posted August 25, 2006 Bob, I couldn't take Actos either. It is the only medicine I have ever taken that raised my liver enzymes. I have an okay doctor here in Las Vegas, but still a long way from you. Sounds like you have a doctor willing to work on things. I think Shoemaker is good in that he admits he doesn't have solutions. Keep us posted on how your wife does on Zithromax. a > > Our doctor has consulted with Shoemaker. We tend to regard him as a > one-trick pony as everything he wants to do basically boils down to CSM, > maybe with Actos. Both make my wife violently ill -- huge immune > activation. Oddly, Actos actually makes her worse rather than better, > and it's intended to tamp down those blasted cytokines. > > We are in the Sonoran Desert of Arizona and significant travel is no > longer possible, so Shoemaker and Blaney might as well have offices on > the moon, in so far as visiting them is concerned. > > Thank you for the Zithro citation. Zithro is a definite possibility. > I'll chase that down. > > Best, > > --Bob Quote Link to comment Share on other sites More sharing options...
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