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Wednesday, November 12, 2008
Tuesday, November 11, 2008
On Line Resources
On-Line Resources:
• Listing of holistic and earth-friendly businesses (including doctors) in New Jersey (http://www.naturalpages.com/nj.html)
• A summary of alternative medicines and sarcoidosis (http://www.healthandage.com/html/res/com/ConsConditions/Sarcoidosiscc.html)
• Neurosarcoidosis support group on Yahoogroups (http://health.groups.yahoo.com/group/Neurosarcoidosis/)
o This can be searched by word to look through all posts. Much of the information on this site is anecdotal, but I have found a ton of information about what has worked for some people – including alternative practices. You can join the group or I can give you my username and password if you want to use it to just search and not post.
• Support group for Sarcoidosis in general (http://www.inspire.com/groups/stop-sarcoidosis/)
• you can also find additional sources on the web (including looking in support group forums). Unleash your creativity! And the research prowess that garnered you all those A’s in college!
(as written by Elizabeth 10/08)
• Listing of holistic and earth-friendly businesses (including doctors) in New Jersey (http://www.naturalpages.com/nj.html)
• A summary of alternative medicines and sarcoidosis (http://www.healthandage.com/html/res/com/ConsConditions/Sarcoidosiscc.html)
• Neurosarcoidosis support group on Yahoogroups (http://health.groups.yahoo.com/group/Neurosarcoidosis/)
o This can be searched by word to look through all posts. Much of the information on this site is anecdotal, but I have found a ton of information about what has worked for some people – including alternative practices. You can join the group or I can give you my username and password if you want to use it to just search and not post.
• Support group for Sarcoidosis in general (http://www.inspire.com/groups/stop-sarcoidosis/)
• you can also find additional sources on the web (including looking in support group forums). Unleash your creativity! And the research prowess that garnered you all those A’s in college!
(as written by Elizabeth 10/08)
Alternative Therapists Seen as of 9/08
1) Dr. Michaelene Callahan, chiropractor
Callahan Family Chiropractic & Rehabilitation
93 Bayard St.
New Brunswick, NJ 08901
Phone: 732 448 1616
Fax: 732 448 1717
http://DrCallahanChiroWeb.com
Elizabeth has seen her off and on since summer 2006, mostly before sarcoid diagnosis.
2) Dr. Shin Shin Su (acupuncture, acupressure, herbology)
Eastern & Western Health Center
5814 Hubbard Dr.
Rockville, MD 20852
Phone: 301 881 0363
Fax: 301 230 1492
Elizabeth has seen her since the 1990s. Really good.
3) Jianzhong Chen, L.Ac. (acupuncturist and Tuina –Chinese massage)
414 Plainsboro Road
Plainsboro, NJ 08536
Phone: 609 750 1822
Fax: 609 750 0886
Elizabeth saw him for a few months in early 2007 before sarcoid diagnosis. Like him at first, then got turned off when he said, “So your pain is now all gone, isn’t it?” and wouldn’t accept her answer “No”.)
4) Dana Laake (nutritionist)
11224 Orleans Way
Kensington, MD 20895-1041
Phone: 301 942 5505
Fax: 301 942 5506
www.DanaLaake.com
danalaake@aol.com
Elizabeth saw her once in fall 2007 before sarcoid diagnosis and followed her nutritional supplement plan for a few months.
5) Mark J. Carangelo (massage & some other stuff)
American Institute of Alternative Medicine, Inc. (private practice and massage school)
555 Rte. 18, 2nd Floor
East Brunswick, NJ 08816
Phone: 732 651 6060
www.aiam-MassageCareer.com
Elizabeth got massages from him several times in 2008. He offered her his daughter’s stem cells!?
6) Amy Berg (reiki)
Reiki & Integrated Energy Therapy
Phone: 732 233 8882
oracle275@aol.com
7) Dr. David Dornfeld (osteopathy)
Family Wellness Center
18 Leonardsville Rd.
Middletown, NJ 07748
Phone: 732 671 3730
Fax: 732 706 1078
www.OsteoDocs.com
Elizabeth saw him for chelation therapy about 5 times out of a planned 10 throughout 2007. Turns out, there’s no ailment that chelation can’t cure! (according to him.)
8) Dr. Richard B. Menashe (osteopathy)
“complementary/alternative physician”
Edison Medical Nutrition Center
15 South Main St.
Edison, NJ 08837
Phone: 732 906 8866
Fax: 732 906 0124
www.NutriDocNJ.com
nutridoc@verizon.net
Elizabeth saw him a couple of times in 2007 for 2 more chelations.
9) Edward S. Magaziner, P.T., M.D.
2186 Route 27, Suite 2D
North Brunswick, NJ 08902
Phone: 732 297 2600
Fax: 732 297 5770
Elizabeth saw him several times. Is open to lots of alternative therapies, one of which even Elizabeth thinks might be quackery (maybe a magnet thing or a visualization thing). Has hydro-exercise facilities, which once gave E a skin infection. But he does suggest that there are lots of alternatives to try for pain besides narcotics.
10) Old Bridge Drugs & Surgicals (pharmacy)
200 Perrine Rd., Bldg 200, Suite 200B
Old Bridge, NJ 08857
Phone: 732 525 2220
Fax: 732 525 2277
Can order rare drugs overnight. Friendly owner is Ajay.
11) Some other pharmacy, on Rte. 27, Edison, NJ
Has alternative-minded medicines, specialized capsules, ways to fix meds in solutions, etc.
Callahan Family Chiropractic & Rehabilitation
93 Bayard St.
New Brunswick, NJ 08901
Phone: 732 448 1616
Fax: 732 448 1717
http://DrCallahanChiroWeb.com
Elizabeth has seen her off and on since summer 2006, mostly before sarcoid diagnosis.
2) Dr. Shin Shin Su (acupuncture, acupressure, herbology)
Eastern & Western Health Center
5814 Hubbard Dr.
Rockville, MD 20852
Phone: 301 881 0363
Fax: 301 230 1492
Elizabeth has seen her since the 1990s. Really good.
3) Jianzhong Chen, L.Ac. (acupuncturist and Tuina –Chinese massage)
414 Plainsboro Road
Plainsboro, NJ 08536
Phone: 609 750 1822
Fax: 609 750 0886
Elizabeth saw him for a few months in early 2007 before sarcoid diagnosis. Like him at first, then got turned off when he said, “So your pain is now all gone, isn’t it?” and wouldn’t accept her answer “No”.)
4) Dana Laake (nutritionist)
11224 Orleans Way
Kensington, MD 20895-1041
Phone: 301 942 5505
Fax: 301 942 5506
www.DanaLaake.com
danalaake@aol.com
Elizabeth saw her once in fall 2007 before sarcoid diagnosis and followed her nutritional supplement plan for a few months.
5) Mark J. Carangelo (massage & some other stuff)
American Institute of Alternative Medicine, Inc. (private practice and massage school)
555 Rte. 18, 2nd Floor
East Brunswick, NJ 08816
Phone: 732 651 6060
www.aiam-MassageCareer.com
Elizabeth got massages from him several times in 2008. He offered her his daughter’s stem cells!?
6) Amy Berg (reiki)
Reiki & Integrated Energy Therapy
Phone: 732 233 8882
oracle275@aol.com
7) Dr. David Dornfeld (osteopathy)
Family Wellness Center
18 Leonardsville Rd.
Middletown, NJ 07748
Phone: 732 671 3730
Fax: 732 706 1078
www.OsteoDocs.com
Elizabeth saw him for chelation therapy about 5 times out of a planned 10 throughout 2007. Turns out, there’s no ailment that chelation can’t cure! (according to him.)
8) Dr. Richard B. Menashe (osteopathy)
“complementary/alternative physician”
Edison Medical Nutrition Center
15 South Main St.
Edison, NJ 08837
Phone: 732 906 8866
Fax: 732 906 0124
www.NutriDocNJ.com
nutridoc@verizon.net
Elizabeth saw him a couple of times in 2007 for 2 more chelations.
9) Edward S. Magaziner, P.T., M.D.
2186 Route 27, Suite 2D
North Brunswick, NJ 08902
Phone: 732 297 2600
Fax: 732 297 5770
Elizabeth saw him several times. Is open to lots of alternative therapies, one of which even Elizabeth thinks might be quackery (maybe a magnet thing or a visualization thing). Has hydro-exercise facilities, which once gave E a skin infection. But he does suggest that there are lots of alternatives to try for pain besides narcotics.
10) Old Bridge Drugs & Surgicals (pharmacy)
200 Perrine Rd., Bldg 200, Suite 200B
Old Bridge, NJ 08857
Phone: 732 525 2220
Fax: 732 525 2277
Can order rare drugs overnight. Friendly owner is Ajay.
11) Some other pharmacy, on Rte. 27, Edison, NJ
Has alternative-minded medicines, specialized capsules, ways to fix meds in solutions, etc.
History of Elizabeth's Alternative Therapy Treatments to date:
• I had about 10 chelations done to remove heavy metal, many acupuncture treatments, visited with a Nutritionist consult, gone to a chiropractor, practiced yoga (when I was feeling better), and visited a massage therapist.
o The nutritionist I visited, Dana Laake, was great but she had me on so many vitamins while I was having hard time keeping food down (50 pills a day of custom mixed pills) that my doctor freaked out when he saw 1/2 of what I was on - I was hospitalized with fast heat short breath....I'm sure not from the vitamins - but it was too much so I have not gone back to her I kind of lost the trust....
o I was seeing my acupuncturist in Virginia, Dr. Su, a lot and that seemed to be helping some but was still very sick when getting treatments. Dr. Su is great, but it is too hard to travel from my parents to see her all the time - I will need to see her regularly and would want to move close to her rather than go back and forth from my parents, or find a local acupuncturist (who will be in New Brunswick NJ for the next 10 mos. at least).
o I have tried a couple of local acupuncturists that mildly helped but didn't feel were very in tune with me.
o Chiropracty helped but I was told to stop going so much – I may want to go some, same with massage. (I became too ill to even take a cab or be driven these places so I want to minimize trips and would be great to find a couple treatments in one place or they come to me some or maybe I just do once a month. Insurance gives a discount on some chiro and acu's 25%. It does though cover chelation.
o The nutritionist I visited, Dana Laake, was great but she had me on so many vitamins while I was having hard time keeping food down (50 pills a day of custom mixed pills) that my doctor freaked out when he saw 1/2 of what I was on - I was hospitalized with fast heat short breath....I'm sure not from the vitamins - but it was too much so I have not gone back to her I kind of lost the trust....
o I was seeing my acupuncturist in Virginia, Dr. Su, a lot and that seemed to be helping some but was still very sick when getting treatments. Dr. Su is great, but it is too hard to travel from my parents to see her all the time - I will need to see her regularly and would want to move close to her rather than go back and forth from my parents, or find a local acupuncturist (who will be in New Brunswick NJ for the next 10 mos. at least).
o I have tried a couple of local acupuncturists that mildly helped but didn't feel were very in tune with me.
o Chiropracty helped but I was told to stop going so much – I may want to go some, same with massage. (I became too ill to even take a cab or be driven these places so I want to minimize trips and would be great to find a couple treatments in one place or they come to me some or maybe I just do once a month. Insurance gives a discount on some chiro and acu's 25%. It does though cover chelation.
Organization of the Alternative Therapy Team's Efforts and GOALS
Written by Elizabeth October 13, 2008
(1) Brainstorm types of alternative therapies (Ayurvedic, bio-feedback, reiki, etc),
(2) divide up the therapies so each researcher has a “portfolio,” (e.g. Ali has osteopathy and cranial-sacral therapy, Nancy has accupuncture and chriropracty, etc.).
(3) Each researcher begins her report(s) on each therapy. What I really need is for you to identify well-regarded practioners that I can reach in, say 45 minutes, from either New Brunswick, NJ, or Reston, VA. But if you find someone farther afield, by all means include them; I will do whatever it takes to get better!
Whenever we each come across information that's not in our own portfolio, we send it to the leader for that therapy, who incorporates it into her in-progress report.
(4) Synthesize your findings and recommendations and send to me and each other.
(5) Everyone “reviews” everyone else’s recommendations and the group comes up with the 3 or 4 best practitioners for me to go to.
I’ll reiterate here: I’m overwhelmed by all the possibilities out there. I’m in no condition to make these tough decisions on my own. I really hope that in your collective wisdom you can just tell me who I need to see and what I need to do. I know it’s a big responsibility, but I trust in you and I love you. And if you reach somewhat of a consensus among yourselves, it will provide all the confidence I need. OK, realistically with this many people we won’t get a lot of consensus, so make the strongest case possible for your recommendations and the best ideas will carry the day.
This is an example of what I hope would come out of this group, ideally, in 6 weeks or so: “We recommend Elizabeth see Dr. X, a Nutritionist in New Brunswick, Dr. Y, a shaman in Nebraska and if you get stronger, move to Maryland to see Dr Su regularly.”
Goals:
• Put together a list of recommendations (see example above) that I can consider as I continue to try and get (Ideally, I would like these recommendations to include a few options based on how well I am/if I can move around on own).
• Find healers in the New Brunswick, NJ area and the Reston, VA area. (However, if there is an extraordinary healer further afield I would consider visiting them.)
• Find therapies to focus on the following three things: (1) stop the nerve damage that is occurring, (2) promote nerve regrowth, and (3) negate the negative side effects of my western medicine (including the immunosuppresents and steroids I will be on).
• Keep the number of alternative medicine doctors I see minimal because of simplicity, money, difficulty getting to appointments.
(1) Brainstorm types of alternative therapies (Ayurvedic, bio-feedback, reiki, etc),
(2) divide up the therapies so each researcher has a “portfolio,” (e.g. Ali has osteopathy and cranial-sacral therapy, Nancy has accupuncture and chriropracty, etc.).
(3) Each researcher begins her report(s) on each therapy. What I really need is for you to identify well-regarded practioners that I can reach in, say 45 minutes, from either New Brunswick, NJ, or Reston, VA. But if you find someone farther afield, by all means include them; I will do whatever it takes to get better!
Whenever we each come across information that's not in our own portfolio, we send it to the leader for that therapy, who incorporates it into her in-progress report.
(4) Synthesize your findings and recommendations and send to me and each other.
(5) Everyone “reviews” everyone else’s recommendations and the group comes up with the 3 or 4 best practitioners for me to go to.
I’ll reiterate here: I’m overwhelmed by all the possibilities out there. I’m in no condition to make these tough decisions on my own. I really hope that in your collective wisdom you can just tell me who I need to see and what I need to do. I know it’s a big responsibility, but I trust in you and I love you. And if you reach somewhat of a consensus among yourselves, it will provide all the confidence I need. OK, realistically with this many people we won’t get a lot of consensus, so make the strongest case possible for your recommendations and the best ideas will carry the day.
This is an example of what I hope would come out of this group, ideally, in 6 weeks or so: “We recommend Elizabeth see Dr. X, a Nutritionist in New Brunswick, Dr. Y, a shaman in Nebraska and if you get stronger, move to Maryland to see Dr Su regularly.”
Goals:
• Put together a list of recommendations (see example above) that I can consider as I continue to try and get (Ideally, I would like these recommendations to include a few options based on how well I am/if I can move around on own).
• Find healers in the New Brunswick, NJ area and the Reston, VA area. (However, if there is an extraordinary healer further afield I would consider visiting them.)
• Find therapies to focus on the following three things: (1) stop the nerve damage that is occurring, (2) promote nerve regrowth, and (3) negate the negative side effects of my western medicine (including the immunosuppresents and steroids I will be on).
• Keep the number of alternative medicine doctors I see minimal because of simplicity, money, difficulty getting to appointments.
Etiology of Neurosacroidosis
Written by Elizabeth, October 13, 2008
As taken from a letter to the editor in the Journal of Rheumatology (http://www.jrheum.com/subscribers/07/11/2313.html#references)
“The etiology of sarcoidosis remains unknown, although some observations suggest interactions between genetic inheritance and environmental or infectious agents. Several microorganisms have been implicated as potential causes of sarcoidosis, i.e., mycobacteria, Borrelia burgdorferi, Propionibacterium acnes, and Rickettsia helvetica.”
We have been looking into an alternative approach and possible cause as multiple 'evolved' bacteria.....something that may have warrant, but wouldn't be available for years to try - even if it is the right thing. However, we are plowing through and gathering information from the few labs and doctors that exist in hopes that we can soon test me for some of these things (my DNA and others). Even if this was ready to try now, my chance of dying or having significant irreversible damage leading to me needing assistance for my basic activities (breathing machine, feeding tube, etc) is too great, but it may prove the right thing to do in the near future....
As taken from a letter to the editor in the Journal of Rheumatology (http://www.jrheum.com/subscribers/07/11/2313.html#references)
“The etiology of sarcoidosis remains unknown, although some observations suggest interactions between genetic inheritance and environmental or infectious agents. Several microorganisms have been implicated as potential causes of sarcoidosis, i.e., mycobacteria, Borrelia burgdorferi, Propionibacterium acnes, and Rickettsia helvetica.”
We have been looking into an alternative approach and possible cause as multiple 'evolved' bacteria.....something that may have warrant, but wouldn't be available for years to try - even if it is the right thing. However, we are plowing through and gathering information from the few labs and doctors that exist in hopes that we can soon test me for some of these things (my DNA and others). Even if this was ready to try now, my chance of dying or having significant irreversible damage leading to me needing assistance for my basic activities (breathing machine, feeding tube, etc) is too great, but it may prove the right thing to do in the near future....
History of Elizabeth's Condition, Current Condition and Medications
Written by Elizabeth on October 13, 2008
My condition:
Currently, I am bed-ridden 90% of the time and in absolutely terrible shape. My overall suffering level (including pain, nausea, weakness, overall nasty feeling) is a 9/10 lately - so bad I can't stand to be awake/alive. I can bring it down to a 6 or 7/10 about 10-20% of the time, like now, after tons of sleep and careful control of little food bits and medications. I have a hard time getting any medications in, so any therapy I go on would need to start gently, and I have a very hard time travelling in the car so that is an issue as well.
History of my symptoms and their cause:
I have been diagnosed with Neurosarcoidosis. In addition to the the granulomas that have formed in my brain, multiple organs have been effected by the sarcoidosis - liver, spleen, lungs, pituitary, bone, skin, lacrimal and perotid and other glands, lymph nodes, etc.
These symptoms started 2 years ago and improved on a high dose steroid regimen which I was put on for about three months in 2007. I was getting better on the prednisone (steroid) treatment, but about 2 months in I crashed really hard with sickness that had related, but different, symptoms to what had been the most problematic. We now know that this was my nervous system sarcoidosis starting to proliferate. After much unceasing illness and no answers, I finally saw a doctor who could account for all my symptoms as being directly or indirectly related to my neurosarcoidosis. (I had to go outside of Johns Hopkins to find the expertise because the neurological part of the disease I am experiencing is so rare.)
Essentially, the small fibers of my nervous system are having an acute attack (neuropathy). Some of the small fibers being attacked are: my cardiac autonomic nerves (leaves me very dizzy and having vertigo constantly), my stomach autonomic nerves (leaves me with constant terrible nausea and vomiting), my bladder autonomic nerves, and all other related autonomic nerves (paralysis and dysfunction of all the unconscious nerves) – this leaves me with severe pain and severe loss of sensation throughout most of body. I have multiple cranial nerves involved as well – which cause everything from difficulties swallowing and breathing to loss of smell.
The manifestations of the disease are very atypical from what you usually see in a neurologic disease. For instance, I have about 6 cranial nerves involved in patchy areas (normally, a single nerve is effected entirely). Additionally, my small fiber neuropathy (which is most commonly seen in diabetics) also follows an unknown, patchy course. The small fiber neuropathy is particularly worrisome because it can often eventually lead to complete dysfunction of the autonomic nervous system – the autonomic nervous system effects, among other things, heart rate, digestion, and respiration rate).
Current medications:
I take a number of pain medications, but wanted to highlight the drugs that are being used to treat the Neurosarcroidosis.
• I am on 40 mg./day of prednisone currently.
• I will start a drug called CellCept (500mg/twice a day) in a few days. This dosage will increase to 1000mg/twice a day if I tolerate the smaller dosage. I will also begin using Remicade in week 0, week 2, and week 6 (we don’t know the dosage at this point.)
o The CellCept will take about 6 months to start working, and if I tolerate it and it works, some of my nerves may start growing back. The best case scenario is that many of them grow back slowly and I gain a lot of function back. (I would then have to consider the effects of staying on these drugs long term. If I have to stay on them for life I see alternative medicine as a way to help minimize the toxic effects they might have). The worst case scenario is that the drug doesn't work and I progress in the disease.
o The Remicaide will, if tolerated and if it works, make the medicine work faster - which I need right now because of the multiple life threatening complications that will continue and get worse if progress is not stopped.
o I want to note that these two immunosuppressants are chosen based on 6 patients (with similar symptoms) that my two doctors have worked with. I am doing tons of research to look into what other medications may have worked for others....in case these two drugs do not work. I know there is a good chance they won't and want to be prepared.
My condition:
Currently, I am bed-ridden 90% of the time and in absolutely terrible shape. My overall suffering level (including pain, nausea, weakness, overall nasty feeling) is a 9/10 lately - so bad I can't stand to be awake/alive. I can bring it down to a 6 or 7/10 about 10-20% of the time, like now, after tons of sleep and careful control of little food bits and medications. I have a hard time getting any medications in, so any therapy I go on would need to start gently, and I have a very hard time travelling in the car so that is an issue as well.
History of my symptoms and their cause:
I have been diagnosed with Neurosarcoidosis. In addition to the the granulomas that have formed in my brain, multiple organs have been effected by the sarcoidosis - liver, spleen, lungs, pituitary, bone, skin, lacrimal and perotid and other glands, lymph nodes, etc.
These symptoms started 2 years ago and improved on a high dose steroid regimen which I was put on for about three months in 2007. I was getting better on the prednisone (steroid) treatment, but about 2 months in I crashed really hard with sickness that had related, but different, symptoms to what had been the most problematic. We now know that this was my nervous system sarcoidosis starting to proliferate. After much unceasing illness and no answers, I finally saw a doctor who could account for all my symptoms as being directly or indirectly related to my neurosarcoidosis. (I had to go outside of Johns Hopkins to find the expertise because the neurological part of the disease I am experiencing is so rare.)
Essentially, the small fibers of my nervous system are having an acute attack (neuropathy). Some of the small fibers being attacked are: my cardiac autonomic nerves (leaves me very dizzy and having vertigo constantly), my stomach autonomic nerves (leaves me with constant terrible nausea and vomiting), my bladder autonomic nerves, and all other related autonomic nerves (paralysis and dysfunction of all the unconscious nerves) – this leaves me with severe pain and severe loss of sensation throughout most of body. I have multiple cranial nerves involved as well – which cause everything from difficulties swallowing and breathing to loss of smell.
The manifestations of the disease are very atypical from what you usually see in a neurologic disease. For instance, I have about 6 cranial nerves involved in patchy areas (normally, a single nerve is effected entirely). Additionally, my small fiber neuropathy (which is most commonly seen in diabetics) also follows an unknown, patchy course. The small fiber neuropathy is particularly worrisome because it can often eventually lead to complete dysfunction of the autonomic nervous system – the autonomic nervous system effects, among other things, heart rate, digestion, and respiration rate).
Current medications:
I take a number of pain medications, but wanted to highlight the drugs that are being used to treat the Neurosarcroidosis.
• I am on 40 mg./day of prednisone currently.
• I will start a drug called CellCept (500mg/twice a day) in a few days. This dosage will increase to 1000mg/twice a day if I tolerate the smaller dosage. I will also begin using Remicade in week 0, week 2, and week 6 (we don’t know the dosage at this point.)
o The CellCept will take about 6 months to start working, and if I tolerate it and it works, some of my nerves may start growing back. The best case scenario is that many of them grow back slowly and I gain a lot of function back. (I would then have to consider the effects of staying on these drugs long term. If I have to stay on them for life I see alternative medicine as a way to help minimize the toxic effects they might have). The worst case scenario is that the drug doesn't work and I progress in the disease.
o The Remicaide will, if tolerated and if it works, make the medicine work faster - which I need right now because of the multiple life threatening complications that will continue and get worse if progress is not stopped.
o I want to note that these two immunosuppressants are chosen based on 6 patients (with similar symptoms) that my two doctors have worked with. I am doing tons of research to look into what other medications may have worked for others....in case these two drugs do not work. I know there is a good chance they won't and want to be prepared.
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