Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Where do you live? Also why not use Dr. at www.allthingsmale.com? He really seems to have a treatment protocol down pat. In a message dated 8/15/2004 1:56:19 PM Eastern Daylight Time, no_reply writes: Hello all, I need to find a doctor that knows about hypogonadism asap. I have been so tired that I have to pull off the road for naps. My PCP gave me Provigil to help, but so far it actually makes me more sleepy and very dizzy. I am going to have to take a leave from work with no pay This is why I need to find a reputable doc in my area (within 100-200 miles). I found a site talking about 'The Cleveland Clinic' Anyone hear anything good or bad about this place for our problems. It looks as though they have doctors that treat this condition, but I haven't much about the place on this board. I am at the point that I need to do something right away. I don't want to find a doc that wants to experiment one drug at a time and wait a month and then try something else if it fails. Y'all know what I mean. I have been tested and have low T but thats all I know so far. He put me on Testim once a day but hasn't tested again. He (PCP) hasn't heard of the protocols so I'd really like to get to someone that can help in a hurry. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 , Thanks for the reply. I checked out his site, but I would prefer to see a Dr in person, especially with taking off work. My PCP takes forever to get back in touch with me, I can just imagine trying to get another Dr to coordinate instructions for a patient. I live in Pittsburgh, Pa and willing to travel if needed. I hoped to find a Dr like Dr Gambrell but closer, that's why I asked about the Cleveland Clinic. Their site looked interesting and listed Doctors that work in this field, I just thought I would ask you all to see if anyone heard anything about this place. Thanks again, Kenny > Where do you live? > > Also why not use Dr. at www.allthingsmale.com? He really seems to have a > treatment protocol down pat. > > > > > In a message dated 8/15/2004 1:56:19 PM Eastern Daylight Time, > no_reply writes: > Hello all, > > I need to find a doctor that knows about hypogonadism asap. I have > been so tired that I have to pull off the road for naps. My PCP gave > me Provigil to help, but so far it actually makes me more sleepy and > very dizzy. I am going to have to take a leave from work with no > pay This is why I need to find a reputable doc in my area > (within 100-200 miles). > > I found a site talking about 'The Cleveland Clinic' Anyone hear > anything good or bad about this place for our problems. It looks as > though they have doctors that treat this condition, but I haven't > much about the place on this board. I am at the point that I need to > do something right away. I don't want to find a doc that wants to > experiment one drug at a time and wait a month and then try something > else if it fails. Y'all know what I mean. I have been tested and > have low T but thats all I know so far. He put me on Testim once a > day but hasn't tested again. He (PCP) hasn't heard of the protocols > so I'd really like to get to someone that can help in a hurry. > > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2011 Report Share Posted February 1, 2011 When you talk to the Cleveland Clinic, ask to speak to one of their Mitochondrial Specialists. There's a known link between mitochondrial disease/ dysfunction and autism. Mitochondria which supply energy to the cells are very susceptible to viruses and toxins.   More info here:  http://my.clevelandclinic.org/disorders/mitochondrial_disease/hic_myths_and_fact\ s_about_mitochondrial_diseases.aspx  http://www.mitosoc.org/  http://www.iancommunity.org/cs/asds_related_disorders/mitochondrial_disease   http://onlinelibrary.wiley.com/doi/10.1002/ddrr.112/full   http://www.mitoaction.org/autism   From: chocolatiluv <chocolatiluv@...> Subject: Cleveland Clinic??? Date: Tuesday, February 1, 2011, 2:44 PM  Has anyone in this group ever talked to a Dr.or scientist at Cleveland Clinic? I live in S.E. Ohio I called today. I questioned if they knew about the possible connection with the XMRV virus & our children being diagnosed with (so called) autism. Ofcourse only got to talk to several receptionist I continued explaining the & how our children are physically sick the last resectionist said this information will be given to the Dr. that is head of the research dept. Dr. Manos I searched this site could not find any information about autism only in the behavior catagory of their site. Very disapointed they knew nothing about all this. They have my Ph.# hoping a call back. Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2011 Report Share Posted February 1, 2011 Hi carol, as far as I know, the Cleveland Clinic scientists are the ones who discovered XMRV (in Prostate Cancer patients) but they are not actually looking into treating XMRV-related neuroimmune diseases. The Whittemore Institute is the center who will be developing treatments for neuroimmune diseases. They will be disseminating the info to doctors around the country so if you know any doctors who are interested let me know -Jen From: chocolatiluv <chocolatiluv@...> Subject: Cleveland Clinic??? Date: Tuesday, February 1, 2011, 1:44 PM  Has anyone in this group ever talked to a Dr.or scientist at Cleveland Clinic? I live in S.E. Ohio I called today. I questioned if they knew about the possible connection with the XMRV virus & our children being diagnosed with (so called) autism. Ofcourse only got to talk to several receptionist I continued explaining the & how our children are physically sick the last resectionist said this information will be given to the Dr. that is head of the research dept. Dr. Manos I searched this site could not find any information about autism only in the behavior catagory of their site. Very disapointed they knew nothing about all this. They have my Ph.# hoping a call back. Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2011 Report Share Posted February 1, 2011 more mito info... 65% Autistic Children Found To Have Mitochondrial Disorder  Oxidative Phosphorylation (OXPHOS) Defects in Children with Autistic Spectrum Disorders [iN1-1.004] Shoffner, C. Hyams, Genevieve N. Langley, Atlanta, GA  OBJECTIVE: To retrospectively survey patients with autistic spectrum disorders that were evaluated clinically for mitochondrial disease and to assess the clinical and laboratory features of this group of patients.  BACKGROUND: Autism is a developmental disorder characterized by disturbance in language, perception and socialization. A variety of biochemical, anatomical and neuroradiographical studies imply a disturbance of brain energy metabolism in autistic patients. Recent studies confirmed the previously reported high frequency of biochemical markers of mitochondrial dysfunction, namely hyperlactacidemia and increased lactate/pyruvate ratio, in a significant fraction of 210 autistic patients. (J Autism Dev Disord, 2006. 36:1137) Although rare, Mecp2 mutations can produce autistic features and the mouse model has significant mitochondrial defects. (Mol Cell Biol, 2006. 26: 5033) Additional genetic defects associated with mitochondrial dysfunction include inverted 15q11-13 duplication (Complex III defect) (Ann Neurol, 2003,53,801), A3243G mutation (mitochondrial transfer RNALeucine(UUR) gene, mtDNA depletion(J Pediatr, 2004,144,81), G8363A mutation (mitochondrial transfer RNALysine gene. (J Child Neurol, 2000,15,357).  DESIGN/METHODS: Retrospective analysis of 37 children with autistic spectrum disorders. Clinical, biochemical, metabolic, and genetic data is assessed.  RESULTS: Twenty four children (65%) had skeletal muscle OXPHOS defects: Complex I (16), Complex I and Complex III (5), Complex III (1), Complex I and Complex IV (2). Thirteen (35%) had normal skeletal muscle OXPHOS enzyme activities for Complexes I-IV. Clinical, metabolic, protein chemistry, and sequencing of coding regions of the mitochondrial DNA will be reported.  CONCLUSIONS/RELEVANCE: Most children with autistic spectrum disorders do not have recognizable abnormalities on a broad range of imaging, metabolic and genetic studies. However, a subset of patients do harbor significant defects in oxidative phosphorylation function. Complex I abnormalities are the most frequently encountered defect. Recognition of these children is important for understanding how genes that produce autistic spectrum disorders impact mitochondrial function. Supported by: Horizon Molecular Medicine.  http://www.pedsource.com/node/9571 From: chocolatiluv <chocolatiluv@...> Subject: Cleveland Clinic??? Date: Tuesday, February 1, 2011, 2:44 PM  Has anyone in this group ever talked to a Dr.or scientist at Cleveland Clinic? I live in S.E. Ohio I called today. I questioned if they knew about the possible connection with the XMRV virus & our children being diagnosed with (so called) autism. Ofcourse only got to talk to several receptionist I continued explaining the & how our children are physically sick the last resectionist said this information will be given to the Dr. that is head of the research dept. Dr. Manos I searched this site could not find any information about autism only in the behavior catagory of their site. Very disapointed they knew nothing about all this. They have my Ph.# hoping a call back. Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2011 Report Share Posted February 1, 2011 > > Jen I will let you know if any are interested. I was also trying to find a dr. close to home for my grand daughter. She has only had one vaccine ? which one she was an infant Dr. G. did an immune panel said titers high.He mentioned seeing an immunologist here. She was Seen by a dr at Cincinnati childrens the dr there wouldn`t listen to anything my daughter had to say about all this()Nothing to worry about she is fine. So we are also trying to get an open ear to all this() Would be great too if they( Dr. at Cleveland Clinic) would see these children are physically sick causing all the physiological problems. Would love to see more studies in the right direction for our chiildren. What is the latest research on ? I have ordered Dr. G`s book wantng to read all about what he has to say.I searched site couldn`t find any research going on now.Does anyone know? Thanks Carole> From: chocolatiluv <chocolatiluv@...> > Subject: Cleveland Clinic??? > > Date: Tuesday, February 1, 2011, 1:44 PM > > > Â > > > > Has anyone in this group ever talked to a Dr.or scientist at Cleveland Clinic? I live in S.E. Ohio I called today. I questioned if they knew about the possible connection with the XMRV virus & our children being diagnosed with (so called) autism. Ofcourse only got to talk to several receptionist I continued explaining the & how our children are physically sick the last resectionist said this information will be given to the Dr. that is head of the research dept. Dr. Manos I searched this site could not find any information about autism only in the behavior catagory of their site. Very disapointed they knew nothing about all this. They have my Ph.# hoping a call back. > Carole > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2011 Report Share Posted February 6, 2011 > > > From: chocolatiluv <chocolatiluv@...> > Subject: Cleveland Clinic??? > > Date: Tuesday, February 1, 2011, 2:44 PM > > > Â > > > > Has anyone in this group ever talked to a Dr.or scientist at Cleveland Clinic? I live in S.E. Ohio I called today. I questioned if they knew about the possible connection with the XMRV virus & our children being diagnosed with (so called) autism. Ofcourse only got to talk to several receptionist I continued explaining the & how our children are physically sick the last resectionist said this information will be given to the Dr. that is head of the research dept. Dr. Manos I searched this site could not find any information about autism only in the behavior catagory of their site. Very disapointed they knew nothing about all this. They have my Ph.# hoping a call back. > Carole > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 Unless things have changed drastically in the last few years, I would expect the Clinic (and Cleveland in general) to be extremely conservative w/r/t treating autism medically. If you want to address mito specifically and as it relates to autism, you need to get to Dr. Bruce Cohen at the Clinic. Mito testing can be extremely costly so make sure that you understand your insurance coverage and have good reasons to suspect mito. > > Has anyone in this group ever talked to a Dr.or scientist at Cleveland Clinic? I live in S.E. Ohio I called today. I questioned if they knew about the possible connection with the XMRV virus & our children being diagnosed with (so called) autism. Ofcourse only got to talk to several receptionist I continued explaining the & how our children are physically sick the last resectionist said this information will be given to the Dr. that is head of the research dept. Dr. Manos I searched this site could not find any information about autism only in the behavior catagory of their site. Very disapointed they knew nothing about all this. They have my Ph.# hoping a call back. > Carole > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2011 Report Share Posted February 9, 2011 Hello, I just joined this group, so this is my first post. My husband just read Dr. Goldberg's book. I took my son to Dr. Sumit Parikh MD at CC last summer. He was recruited to work with Dr. Cohen. We had genetic testing done as well as a screen for mito. The total cost of the testing was over $9000. It was paid for by our insurance, BCBS PPO. I had a very negative experience with Dr. Parikh. His view of autism is that " something " (not vaccines) is triggering gene mutations in our kids. He sees autism as genetic. When we saw him in June, he and a psychologist were doing clinical trials for 2-6 y/o's for use of the drug used for generalized anxiety disorder (Buspar). I am not sure if the clinical trials have been completed. My recommendation is to avoid Cleveland Clinic, at least for autism issues. I have a few friends who have seen other MDs at CC and have also found the physicians to be poor communicators. Dr. Parikh was a poor listener in terms of listening to me, the person who has spent the most time with my son. He also completely discounted anything that is biomedical. He acted like he was the expert and anything that I said was not relevant. Hope this helps! Amy > > > > Has anyone in this group ever talked to a Dr.or scientist at Cleveland Clinic? I live in S.E. Ohio I called today. I questioned if they knew about the possible connection with the XMRV virus & our children being diagnosed with (so called) autism. Ofcourse only got to talk to several receptionist I continued explaining the & how our children are physically sick the last resectionist said this information will be given to the Dr. that is head of the research dept. Dr. Manos I searched this site could not find any information about autism only in the behavior catagory of their site. Very disapointed they knew nothing about all this. They have my Ph.# hoping a call back. > > Carole > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2011 Report Share Posted February 11, 2011 Hi Amy, What an awful experience, I am sorry! I wish I could show that doctor my daughter before and after treatment. Lets see if he still thinks its genetic then!!! -Jen From: ablg67 <ablg67@...> Subject: Re: Cleveland Clinic??? Date: Wednesday, February 9, 2011, 6:16 PM  Hello, I just joined this group, so this is my first post. My husband just read Dr. Goldberg's book. I took my son to Dr. Sumit Parikh MD at CC last summer. He was recruited to work with Dr. Cohen. We had genetic testing done as well as a screen for mito. The total cost of the testing was over $9000. It was paid for by our insurance, BCBS PPO. I had a very negative experience with Dr. Parikh. His view of autism is that " something " (not vaccines) is triggering gene mutations in our kids. He sees autism as genetic. When we saw him in June, he and a psychologist were doing clinical trials for 2-6 y/o's for use of the drug used for generalized anxiety disorder (Buspar). I am not sure if the clinical trials have been completed. My recommendation is to avoid Cleveland Clinic, at least for autism issues. I have a few friends who have seen other MDs at CC and have also found the physicians to be poor communicators. Dr. Parikh was a poor listener in terms of listening to me, the person who has spent the most time with my son. He also completely discounted anything that is biomedical. He acted like he was the expert and anything that I said was not relevant. Hope this helps! Amy > > > > Has anyone in this group ever talked to a Dr.or scientist at Cleveland Clinic? I live in S.E. Ohio I called today. I questioned if they knew about the possible connection with the XMRV virus & our children being diagnosed with (so called) autism. Ofcourse only got to talk to several receptionist I continued explaining the & how our children are physically sick the last resectionist said this information will be given to the Dr. that is head of the research dept. Dr. Manos I searched this site could not find any information about autism only in the behavior catagory of their site. Very disapointed they knew nothing about all this. They have my Ph.# hoping a call back. > > Carole > > > ________________________________________________________________________________\ ____ 8:00? 8:25? 8:40? Find a flick in no time with the Search movie showtime shortcut. http://tools.search./shortcuts/#news Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2011 Report Share Posted February 11, 2011 Yes, that is pretty narrow Call me a cynic but some of the MD/Researchers are heavily Dependant on pharma for research grants etc & would not be in their best interests to even entertain with minimal curiosity the concept of vaccine exacerbating an underlying condition or other such possibilities. You should also point him to this new publication so that he can be more uptodate & maybe help the next family he sees http://www.ncbi.nlm.nih.gov/pubmed/21299355 http://www.rescuepost.com/files/theoretical-aspects-of-autism-causes-a-review1.p\ df ________________________________ From: Hankinson <jlhank80@...> Sent: Fri, February 11, 2011 3:33:24 PM Subject: Re: Re: Cleveland Clinic??? Hi Amy, What an awful experience, I am sorry! I wish I could show that doctor my daughter before and after treatment. Lets see if he still thinks its genetic then!!! -Jen From: ablg67 <ablg67@...> Subject: Re: Cleveland Clinic??? Date: Wednesday, February 9, 2011, 6:16 PM Hello, I just joined this group, so this is my first post. My husband just read Dr. Goldberg's book. I took my son to Dr. Sumit Parikh MD at CC last summer. He was recruited to work with Dr. Cohen. We had genetic testing done as well as a screen for mito. The total cost of the testing was over $9000. It was paid for by our insurance, BCBS PPO. I had a very negative experience with Dr. Parikh. His view of autism is that " something " (not vaccines) is triggering gene mutations in our kids. He sees autism as genetic. When we saw him in June, he and a psychologist were doing clinical trials for 2-6 y/o's for use of the drug used for generalized anxiety disorder (Buspar). I am not sure if the clinical trials have been completed. My recommendation is to avoid Cleveland Clinic, at least for autism issues. I have a few friends who have seen other MDs at CC and have also found the physicians to be poor communicators. Dr. Parikh was a poor listener in terms of listening to me, the person who has spent the most time with my son. He also completely discounted anything that is biomedical. He acted like he was the expert and anything that I said was not relevant. Hope this helps! Amy > > > > Has anyone in this group ever talked to a Dr.or scientist at Cleveland >Clinic? I live in S.E. Ohio I called today. I questioned if they knew about the >possible connection with the XMRV virus & our children being diagnosed with (so >called) autism. Ofcourse only got to talk to several receptionist I continued >explaining the & how our children are physically sick the last resectionist >said this information will be given to the Dr. that is head of the research >dept. Dr. Manos I searched this site could not find any information >about autism only in the behavior catagory of their site. Very disapointed they >knew nothing about all this. They have my Ph.# hoping a call back. > > Carole > > > __________________________________________________________ 8:00? 8:25? 8:40? Find a flick in no time with the Search movie showtime shortcut. http://tools.search./shortcuts/#news Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2011 Report Share Posted February 11, 2011 > > > > > > Has anyone in this group ever talked to a Dr.or scientist at Cleveland Clinic? I live in S.E. Ohio I called today. I questioned if they knew about the possible connection with the XMRV virus & our children being diagnosed with (so called) autism. Ofcourse only got to talk to several receptionist I continued explaining the & how our children are physically sick the last resectionist said this information will be given to the Dr. that is head of the research dept. Dr. Manos I searched this site could not find any information about autism only in the behavior catagory of their site. Very disapointed they knew nothing about all this. They have my Ph.# hoping a call back. > > > Carole > > > > > > Amy Sorry to hear about this. So disapointed in CC. I guess that was the reason for researching CC to see what they knew about the connection with viruses. They gave me a name in CC research Dr. Max Wizntzr I haven`t had the time to call. Do you know of a pediatric immunologist in Ohio? We need one for my granddaughter? She has never been vaccinated we are really concerned she has been sick all winter colds, flu, bronchitis she has asthma. Carole Quote Link to comment Share on other sites More sharing options...
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