Last Saturday afternoon I continued to have the horrible pain when eating. It was like early labor. I would describe it like contractions, or like someone kicked a soccer ball in my stomach and I got the wind knocked out of me. I had not eaten solid food in about 10 days and was barely drinking water because when I drank I felt immediately full and uncomfortable.
Jim called Dr.Lerner to see if there was a way to get IV fluids at home and Dr. Lerner suggested I go straight to the ER and that he would get ahold of Dr.Desai (or someone on his GI team) to meet me at the hospital. I went in and ended up staying 3 days. I got three days of IV nutrients which made me feel like superwoman in terms of energy! I saw several doctors at the hospital, they did bloodwork, I did almost 4 cups of golytely and an upper scope. All the tests came back clean. (Except that the CT scan showed my colon was extremely packed). The general conclusion was that my stomach was having spasms for an unknown reason. They sent me home on Dec 23 with an appt with Dr. Desai on Dec 26. I am so so thankful I got to spend Christmas at home!
Jim and I met with Dr. Desai yesterday. My main complaints- 1.) I have pain (about 2-3 inches in diameter) surrounding my bellybutton when I eat and between my ribs when pressure is applied. 2.) When I drink I feel so full after 2 sips it feels like I just finished Thanksgiving dinner. It is uncomfortable to drink. 3.) I have not had a normal bm since August. It has been alternating between diarrhea and constipation depending on how much Natural Calm (magnesium drink) I take. I have tried changing the amount by a fraction of a teaspoon and I still don't have success.
Dr. Desai, unfortunately, did not seem to have any helpful advice. He told me to try Prilosec, take a walk outside daily and try not to be so stressed out. He did echo what most of the other doctors in the ER said which was that I'm on way too many medications for someone my age. I agree. Instead of dealing with the root issues, whether it be migraines or something else, I have had doctors giving me medicine on top of medicine since I was 20 years old. This has caused chronic constipation and who knows what else. He said to come back in a month.
I spoke with Dr.Lerner later that day and he said that he thinks the pain is stemming from the Epstein Barr Virus. I don't know if he means from the Valtrex that I have been taking for it (which he took me off of 2 weeks ago just in case) or other symptoms of the virus. His last statement on the phone was, "When you are feeling better, please come in so we can begin a more rigorous course of action." I'm not sure what to think about that. Dr. Lerner was incredibly helpful while I was in the hospital and I know is very knowledgable about this virus. At the same time I am drawn back to a more natural form of healing with my holistic doctors. We continue to pray for the best course of action and ask God for continued healing.
Friday, December 27, 2013
Friday, December 20, 2013
ER visit
Since a little before Thanksgiving I have been having stomach pain when I eat. It has been getting progressively worse and over the weekend I knew something was wrong because the smallest bite or drink of water caused extreme abdominal pain. Jim took me to the ER on Saturday night and they did a CT scan and a gall bladder ultrasound. The CT scan showed that my colon was completely full of stool, but according to the doctors nothing was "wrong" with it.
When I saw Dr. Lerner on Monday morning he ordered a few GI tests to check for reflux and ulcers and a test to see how the gall bladder was doing emptying. So far everything has come back ok. I had a consultation with Dr. Conley and the notes are below. It still really hurts to eat, but I read the most perfect devotional today which gives me hope and strength:
"My UNFAILING LOVE IS YOUR FUEL- the best source of energy for you. The glorious source of strength is limitless, so it is always abundantly available. You tend to get quite focused on your health and energy. There is a plan for such concerns, but they can occupy more and more of your thoughts. When you are preoccupied with the condition of your body , I slip from the center of your mind to the periphery. At such times, you are unable to receive much help from Me. The remedy is to repent quickly- turning away from obsessive thinking and turning wholeheartedly toward me." -Jesus Today by Sarah Young
Phone call
(810) 230-0617
Stomach pain
Stop colonics for now
Keep going with magnesium, but don’t do the ultra-high doses every 7-10 days as previously suggested.
Increase dosage of probiotics up to 4-6 capsules a day
He fine with using Klaire Labs Vital 10 (recommended by Dr. Massoumi)
Increase incrementally—go up a pill every few days; stop if have any issues (not likely)
Doesn’t matter whether take with food or empty stomach
You can take them all at once or spread it throughout the day
Radiologist doctor at Beaumont reviewed CT scan and said he can’t believe how much feces was in the digestive tract. His opinion is that there is no room for more food and that is causing the pain
Conley doubts Lerner’s concern that this could be caused by Valtrex but said okay to go off.
If feel same when off Valtrex, stay off.
If feel worse, start taking Valtrex again.
This could all be a gall bladder problem…but pain by belly button means less likely gall bladder
He will review the hepatobiliary scan being done this week. If that is okay, then it’s not likely the gall bladder.
Eating fat can cause the gall bladder to spasm—sometimes immediately. Keep fat low for a while then add it in and see what happens
If hepatobiliary scan is negative and fat ingestion doesn’t trigger the pain, then it’s not gall bladder and these will be our next steps:
Get a colonoscopy to rule out Crohn’s, colitis, inflammation
Talk to primary care physician for referral
Ask them to do most extensive parasite tests possible (they won’t do enough tests unless we ask)
Eventually do an African stool test, but not yet
If all the above tests are negative, it is a mechanical issue and the plan will be to work on clearing you out and establishing regularity:
Continue with large doses of probiotics
Continue with magnesium supplementation
Begin supplementing with psyllium fiber
Do colonics again—maybe 1-2/month
Bleeding since starting progesterone
Conley says stop for now and we’ll revisit after addressing digestive issues
When I saw Dr. Lerner on Monday morning he ordered a few GI tests to check for reflux and ulcers and a test to see how the gall bladder was doing emptying. So far everything has come back ok. I had a consultation with Dr. Conley and the notes are below. It still really hurts to eat, but I read the most perfect devotional today which gives me hope and strength:
"My UNFAILING LOVE IS YOUR FUEL- the best source of energy for you. The glorious source of strength is limitless, so it is always abundantly available. You tend to get quite focused on your health and energy. There is a plan for such concerns, but they can occupy more and more of your thoughts. When you are preoccupied with the condition of your body , I slip from the center of your mind to the periphery. At such times, you are unable to receive much help from Me. The remedy is to repent quickly- turning away from obsessive thinking and turning wholeheartedly toward me." -Jesus Today by Sarah Young
Phone call
(810) 230-0617
Stomach pain
Stop colonics for now
Keep going with magnesium, but don’t do the ultra-high doses every 7-10 days as previously suggested.
Increase dosage of probiotics up to 4-6 capsules a day
He fine with using Klaire Labs Vital 10 (recommended by Dr. Massoumi)
Increase incrementally—go up a pill every few days; stop if have any issues (not likely)
Doesn’t matter whether take with food or empty stomach
You can take them all at once or spread it throughout the day
Radiologist doctor at Beaumont reviewed CT scan and said he can’t believe how much feces was in the digestive tract. His opinion is that there is no room for more food and that is causing the pain
Conley doubts Lerner’s concern that this could be caused by Valtrex but said okay to go off.
If feel same when off Valtrex, stay off.
If feel worse, start taking Valtrex again.
This could all be a gall bladder problem…but pain by belly button means less likely gall bladder
He will review the hepatobiliary scan being done this week. If that is okay, then it’s not likely the gall bladder.
Eating fat can cause the gall bladder to spasm—sometimes immediately. Keep fat low for a while then add it in and see what happens
If hepatobiliary scan is negative and fat ingestion doesn’t trigger the pain, then it’s not gall bladder and these will be our next steps:
Get a colonoscopy to rule out Crohn’s, colitis, inflammation
Talk to primary care physician for referral
Ask them to do most extensive parasite tests possible (they won’t do enough tests unless we ask)
Eventually do an African stool test, but not yet
If all the above tests are negative, it is a mechanical issue and the plan will be to work on clearing you out and establishing regularity:
Continue with large doses of probiotics
Continue with magnesium supplementation
Begin supplementing with psyllium fiber
Do colonics again—maybe 1-2/month
Bleeding since starting progesterone
Conley says stop for now and we’ll revisit after addressing digestive issues
Friday, November 22, 2013
IGG Food Allergy Test Results
I had a phone consultation with Dr. Conley yesterday. I have been cycling between having some good weeks and some really fatigued and painful weeks. To make it easy I just copied Jim's notes. This may not make sense to anyone except me, but all this documentation is mostly just for us anyway.
Constipation
Three options to address chronic constipation:
Take large dose of Natural Calm once per 7-10 days to clear everything out.
See a professional to receive a colonic. If helps, can revisit if/when symptoms return. If didn’t help, try again. If doesn’t help second time, don’t bother again. Don’t let them convince you to follow their protocol; use common sense based upon how you feel and if it helped.
If neither of the above work, could use Miralax, but not ideal because it is a synthetic chemical.
CoQ10
Do 100 and see how it feels.
If ok, increase to 200
If that’s ok, increase to 300
If you feel better, keep at 300
If you don’t feel better, reduce to level you felt the best
Stool test
Do stool test through Genova. This will test for:
Bad bacteria
Parasites
Digestive enzymes
Yeast issues
If results are suspicious, Conley will do an Africa stool study by the world’s renowned expert who is from Nigeria
Results from IGG food allergy test
IGE allergies generate antibodies immediately—reaction takes seconds/minutes (e.g. bee sting allergy). This is classic definition of an allergy
IGG allergies generate antibodies slowly—reaction may take hours/days
Traditional, conservative allergists still argue over the validity of IGG, though the trend is changing. The test was of 154 foods. I will receive the exhausting list in the mail. He read a few of the examples which are listed below.
Results (+4 worst, +1 least worst, 0 non-reactive):
+4
Yeast, baker’s and brewer’s (means you’re also allergic to mold)
Beans (green, pinto, lima, etc.)
+3
Eggs (could be just yolks, but avoid entirely for now)
+3
Cranberries
+2
Nutmeg
Vanilla
+1 (may or may not have problems; if don’t cause problems, ok to eat, but be careful)
Wheat (but you have been off wheat for 10 months, so wise to assume you are more allergic to wheat than this shows)
Milk—goats and cow (like wheat, likely higher since you’ve been off it for over a year)
Cheese
Coffee (it’s a bean and has something that can cross-react for those sensitive to gluten)
Alfalfa (but could be cross-reaction to inhalant allergy)
Banana (but part of rag weed family so this could be cross-reaction to inhalant allergy)
Almonds (if feel well, fine; if feel bad, avoid)
Garlic
Malt
Honeydew
Oyster
Pineapple
Pumpkin
Sesame
Tomato
Yellow squash
No reaction (safe)
Potato
Sweet potato
Proteins
Chicken
Turkey
Lamb
Fish
Beef
Shan notes ground beef makes her feel ill (he suggested buying own grinder)
All veggies not mentioned above are safe
All fruits not mentioned above are safe
Corn (but be careful since a major food allergen)
The digestive issues aren’t likely caused only by the food allergies. Could also be:
Yeast
Conley thinks it is very likely there is a yeast problem even though tests so far have been negative; will check yeast through stool test. Note that candida is only one type of yeast, though most commonly referenced.
Work up to 1-3 tablespoons/day of coconut oil to fight yeast. Take whatever amount you can tolerate.
Parasites
Bad bacteria
Digestive enzymes
Buy natural papaya supplement and try for now…though stop a few days before stool test. If stool test is problematic, Conley will add a more robust digestive enzyme
You have a mutation of MTHF4 gene which reduces body’s ability to absorb folate/folic acid
One gene works, but the other doesn’t. Not uncommon—1 in 5 Americans have trouble converting folate to tetra-hydra-folate, which is essential to nearly every process in the body.
Begin taking 1 tetra-hydra-folate supplement per day to maximize absorption (doesn’t require conversion—body absorbs it as-is)
Avoid restaurant food when you can
Dangerous because they often use artificial oils, butters, flavors even if the food itself is free for allergens
Progesterone was 5.8, within normal but not great
Given symptoms, will begin supplementing with a moderate does (25 mg cream) of a bio-identical form of progesterone (not synthetic).
Unfortunately, Blue Cross will not pay for safer hormone because it is compounded.
Often a chronic treatment, but system could re-boot and then balance out.
Only side effect could be bleeding in between periods (we’d reduce dose if this happens)
Synthetic progesterone (Provara) increases risk of breast cancer, but bio-identical progesterone has not been shown to increase risk of breast cancer. Actually, some studies show women with higher progesterone levels have lower breast cancer.
Start day 12 of cycle (assuming day 1 is menses) and use up until day 25 or day 26 and then stop.
Try this for at least 90 days. If feel better, continue
Read Conley’s “safe estrogen” book
T4 must be converted to T3, the more active thyroid hormone, to regulate the thyroid. But some people can’t convert T4 to T3 very well. Most traditional doctors only prescribe T4.
To help determine if this is an issue, take basal temperatures using a shake-down thermometer (check Amazon to buy):
Shake-down the thermometer before bed
Take temp under arm for 10 minutes upon waking during the first three days of period (try to do it before get out of bed)
If basal temperatures indicate a problem, Conley will likely start with a T3 supplement
Licorice root
Buy automatic blood pressure cuff
If blood pressure at 105 or 110, increase licorice root to two times a day. If higher than that, it isn’t needed
If heart palpitations increase, reduce to 1 per day
Don’t use an adaptogen (for adrenal support) yet because starting progesterone and that can support the adrenals. Focus on progesterone for now and once results are determined, ok to revisit an adaptogen, but don’t want to add too much at once
Get Natural killer T cell test done before end of year
Constipation
Three options to address chronic constipation:
Take large dose of Natural Calm once per 7-10 days to clear everything out.
See a professional to receive a colonic. If helps, can revisit if/when symptoms return. If didn’t help, try again. If doesn’t help second time, don’t bother again. Don’t let them convince you to follow their protocol; use common sense based upon how you feel and if it helped.
If neither of the above work, could use Miralax, but not ideal because it is a synthetic chemical.
CoQ10
Do 100 and see how it feels.
If ok, increase to 200
If that’s ok, increase to 300
If you feel better, keep at 300
If you don’t feel better, reduce to level you felt the best
Stool test
Do stool test through Genova. This will test for:
Bad bacteria
Parasites
Digestive enzymes
Yeast issues
If results are suspicious, Conley will do an Africa stool study by the world’s renowned expert who is from Nigeria
Results from IGG food allergy test
IGE allergies generate antibodies immediately—reaction takes seconds/minutes (e.g. bee sting allergy). This is classic definition of an allergy
IGG allergies generate antibodies slowly—reaction may take hours/days
Traditional, conservative allergists still argue over the validity of IGG, though the trend is changing. The test was of 154 foods. I will receive the exhausting list in the mail. He read a few of the examples which are listed below.
Results (+4 worst, +1 least worst, 0 non-reactive):
+4
Yeast, baker’s and brewer’s (means you’re also allergic to mold)
Beans (green, pinto, lima, etc.)
+3
Eggs (could be just yolks, but avoid entirely for now)
+3
Cranberries
+2
Nutmeg
Vanilla
+1 (may or may not have problems; if don’t cause problems, ok to eat, but be careful)
Wheat (but you have been off wheat for 10 months, so wise to assume you are more allergic to wheat than this shows)
Milk—goats and cow (like wheat, likely higher since you’ve been off it for over a year)
Cheese
Coffee (it’s a bean and has something that can cross-react for those sensitive to gluten)
Alfalfa (but could be cross-reaction to inhalant allergy)
Banana (but part of rag weed family so this could be cross-reaction to inhalant allergy)
Almonds (if feel well, fine; if feel bad, avoid)
Garlic
Malt
Honeydew
Oyster
Pineapple
Pumpkin
Sesame
Tomato
Yellow squash
No reaction (safe)
Potato
Sweet potato
Proteins
Chicken
Turkey
Lamb
Fish
Beef
Shan notes ground beef makes her feel ill (he suggested buying own grinder)
All veggies not mentioned above are safe
All fruits not mentioned above are safe
Corn (but be careful since a major food allergen)
The digestive issues aren’t likely caused only by the food allergies. Could also be:
Yeast
Conley thinks it is very likely there is a yeast problem even though tests so far have been negative; will check yeast through stool test. Note that candida is only one type of yeast, though most commonly referenced.
Work up to 1-3 tablespoons/day of coconut oil to fight yeast. Take whatever amount you can tolerate.
Parasites
Bad bacteria
Digestive enzymes
Buy natural papaya supplement and try for now…though stop a few days before stool test. If stool test is problematic, Conley will add a more robust digestive enzyme
You have a mutation of MTHF4 gene which reduces body’s ability to absorb folate/folic acid
One gene works, but the other doesn’t. Not uncommon—1 in 5 Americans have trouble converting folate to tetra-hydra-folate, which is essential to nearly every process in the body.
Begin taking 1 tetra-hydra-folate supplement per day to maximize absorption (doesn’t require conversion—body absorbs it as-is)
Avoid restaurant food when you can
Dangerous because they often use artificial oils, butters, flavors even if the food itself is free for allergens
Progesterone was 5.8, within normal but not great
Given symptoms, will begin supplementing with a moderate does (25 mg cream) of a bio-identical form of progesterone (not synthetic).
Unfortunately, Blue Cross will not pay for safer hormone because it is compounded.
Often a chronic treatment, but system could re-boot and then balance out.
Only side effect could be bleeding in between periods (we’d reduce dose if this happens)
Synthetic progesterone (Provara) increases risk of breast cancer, but bio-identical progesterone has not been shown to increase risk of breast cancer. Actually, some studies show women with higher progesterone levels have lower breast cancer.
Start day 12 of cycle (assuming day 1 is menses) and use up until day 25 or day 26 and then stop.
Try this for at least 90 days. If feel better, continue
Read Conley’s “safe estrogen” book
T4 must be converted to T3, the more active thyroid hormone, to regulate the thyroid. But some people can’t convert T4 to T3 very well. Most traditional doctors only prescribe T4.
To help determine if this is an issue, take basal temperatures using a shake-down thermometer (check Amazon to buy):
Shake-down the thermometer before bed
Take temp under arm for 10 minutes upon waking during the first three days of period (try to do it before get out of bed)
If basal temperatures indicate a problem, Conley will likely start with a T3 supplement
Licorice root
Buy automatic blood pressure cuff
If blood pressure at 105 or 110, increase licorice root to two times a day. If higher than that, it isn’t needed
If heart palpitations increase, reduce to 1 per day
Don’t use an adaptogen (for adrenal support) yet because starting progesterone and that can support the adrenals. Focus on progesterone for now and once results are determined, ok to revisit an adaptogen, but don’t want to add too much at once
Get Natural killer T cell test done before end of year
Wednesday, November 13, 2013
Trial and Error
We have made a few changes around the house that we hope will help my health- hepa air purifiers, all natural cleaning products, a rebounder for jumping and getting that lymph moving. I am confident that all those things are helping, but the biggest improvements are happening because of my diet change!!
I tried a raw foods diet, a juice only diet and now I'm back to the GAPS diet with a few modifications. It really seems to work best for me. My biggest staples are KYO greens, Nutriclear and my dad's homemade chicken broth. I have also been slowly adding small amounts of green vegetables and chicken or steak. ( I continue to get sick if I have ground beef or ground turkey!) I am drinking a half a glass of water and a heaping teaspoon of Natural Calm to keep me regular. I have found it so helpful to keep things moving.
Dr. Conley has me on olive leaf extract, l-lysine, P5P, IP6 and calcium. Dr Lerner has me on inderol (heart palps) and valtrex for EBV. I recently ran out of topomax for my headaches and am still headache free (about 1 months now)! Dr. Massoumi added Adaptogen 232 which I will start next week.
I'm happy to say that I had enough energy to play with Kate all day yesterday while she was home from school! In the words of Joyce Meyer, "I am not where I want to be, but thank God I'm not where I used to be!"
I tried a raw foods diet, a juice only diet and now I'm back to the GAPS diet with a few modifications. It really seems to work best for me. My biggest staples are KYO greens, Nutriclear and my dad's homemade chicken broth. I have also been slowly adding small amounts of green vegetables and chicken or steak. ( I continue to get sick if I have ground beef or ground turkey!) I am drinking a half a glass of water and a heaping teaspoon of Natural Calm to keep me regular. I have found it so helpful to keep things moving.
Dr. Conley has me on olive leaf extract, l-lysine, P5P, IP6 and calcium. Dr Lerner has me on inderol (heart palps) and valtrex for EBV. I recently ran out of topomax for my headaches and am still headache free (about 1 months now)! Dr. Massoumi added Adaptogen 232 which I will start next week.
I'm happy to say that I had enough energy to play with Kate all day yesterday while she was home from school! In the words of Joyce Meyer, "I am not where I want to be, but thank God I'm not where I used to be!"
Monday, October 14, 2013
GAPS diet
I have had the most success I've had so far trying the GAPS diet. It is a really, weird diet (you'll have to google it) that focuses on healing and sealing the gut. It has not been easy. I'm getting pretty sick of bone broth and fermented vegetables. But, it has been so worth it to have increased energy and decreased pain. I have been finding since I've started the GAPS diet that my body is rejecting foods that I had previously been eating on a regular basis. In addition to eggs, which I think I mentioned in a previous post, I also throw up when I eat kale or beats. I am very limited in what I can eat without getting cramps and stomach pain. Any green vegetable right now gives me stomach pain. It is like my body was working against itself before to ward off foods that had become toxic to my body. This is obviously not true for most people but after doing lots of research (my favorite site is "gutsy girl" I think it is true for me. I am continuing the GAPS diet and food eliminination diet, along with daily rebounding to get my lymph moving to try to get my body to heal itself. For the first time in a long time I can see light at the end of the tunnel.
Romans 5:5
"And hope does not disappoint us because God's love has been poured into our hearts through the Holy Spirit, who has been given to us."
Romans 5:5
"And hope does not disappoint us because God's love has been poured into our hearts through the Holy Spirit, who has been given to us."
Monday, September 16, 2013
Gut healing
I decided to try Tagamet again before my last appt with Dr.Lerner so I could tell him if it worked. Well, after a few days I started throwing up again. I kept throwing up even after I stopped. It felt like someone had ripped my guts apart. At the suggestion of a few others I started the GAPS diet. I have been doing it for almost 2 weeks now and my body is so so happy! I have had more energy than I have had in over a year, less muscle aches and no headaches. The start of the GAPS diet is to eat bone broth with some well cooked vegetables. After a week of that I tried a vitamix shake of kale. About a half a shake in I started to feel sick again. I am continuing to experiment with what my gut likes and doesn't like. Somewhere a mist all these medications and toxins things have gotten very mixed up inside me. I'm looking forward to getting this gut healed!
Monday, August 19, 2013
New Discoveries
Well, I figured out what the nausea has been from. And, no, I'm not pregnant. It's eggs. Somehow, over the last leg of this journey I've developed an allergy of sorts to eggs. I didn't figure out it was the eggs until we started doing a food elimination diet for our daughter and as a result I eliminated eggs. The vomiting went away. When we added them back in for her (and thus for our family) I got sick again! It is a relief to know what was making me so sick.
At Dr.Conley's suggestion I started cutting down on the Valtrex (and eventually stopped a couple of days ago) to see if that was causing the nausea. The results were mixed. I stopped having the heart palpitations. Gosh, that feels good. But, the extreme muscle aches came back. So, back on the valtrex I go.
At Dr.Conley's suggestion I started cutting down on the Valtrex (and eventually stopped a couple of days ago) to see if that was causing the nausea. The results were mixed. I stopped having the heart palpitations. Gosh, that feels good. But, the extreme muscle aches came back. So, back on the valtrex I go.
Saturday, August 17, 2013
Meeting a New Doc
In conjunction with Dr.Lerner we decided to visit a wholistic doc that combines natural and conventional medicine. He is in Flint, MI and his name is Dr.Conley. His initial evaluation with me was over 3 hours. I have a number of tests to get done in the next month and we will have a phone consultation with him in 5 weeks to go over the results and move forward if I chose to do so. Below are my notes from the meeting.
Note: He gave me the option of staying on valtrex or going off it to see what happens. It is a drug that he commonly prescribes but he wants to see if it will help relieve my nausea. His goal is to build up my immune system and when it is strong, begin to remove the prescription antivirals.
Dr.Conley visit 1
Action steps:
Supplements:
1. Begin olive leaf extract (with food) 1-2/ 1-3x per day - at meals
2. Licorice Root (Nature’s Way) 375 Igd
3. L-lysine 500mg 1 cap 1x/day (empty stomach)
4. Calcium (OsteoGuard) 1-2 caps 1-2x per day with meals
Home Tests:
1. Organic Urine Profile: Basic Profile- urine kit at home
2. Adrenal test: saliva kit at home
Lab Tests:
1.AntiCandidaAB
2.Thyroid Profile (including Free T3, T4)
3. Complete Metabolic Profile
4.ANA
5.CBC/Diff/Platelet
6.RBC Mag
7. RBC Potassium
8. ACTH
9. Amylase
10. Lys...?
11.Lithium level
12. Th....antibody?
13. CIC- Candida Immune Complex- not all labs do this. Call first. Make sure my insurance covers it.
14. Natural Kill Cell Functional Assay- must find lab that can send this overnight
15. Progesterone (must be on day 18-21 of cycle)
Note: He gave me the option of staying on valtrex or going off it to see what happens. It is a drug that he commonly prescribes but he wants to see if it will help relieve my nausea. His goal is to build up my immune system and when it is strong, begin to remove the prescription antivirals.
Dr.Conley visit 1
Action steps:
Supplements:
1. Begin olive leaf extract (with food) 1-2/ 1-3x per day - at meals
2. Licorice Root (Nature’s Way) 375 Igd
3. L-lysine 500mg 1 cap 1x/day (empty stomach)
4. Calcium (OsteoGuard) 1-2 caps 1-2x per day with meals
Home Tests:
1. Organic Urine Profile: Basic Profile- urine kit at home
2. Adrenal test: saliva kit at home
Lab Tests:
1.AntiCandidaAB
2.Thyroid Profile (including Free T3, T4)
3. Complete Metabolic Profile
4.ANA
5.CBC/Diff/Platelet
6.RBC Mag
7. RBC Potassium
8. ACTH
9. Amylase
10. Lys...?
11.Lithium level
12. Th....antibody?
13. CIC- Candida Immune Complex- not all labs do this. Call first. Make sure my insurance covers it.
14. Natural Kill Cell Functional Assay- must find lab that can send this overnight
15. Progesterone (must be on day 18-21 of cycle)
Saturday, August 10, 2013
No Progress
So far no progress. The endocrinologist I saw agrees with the EB diagnosis basis on my high titers. She also saw no current issues with my thyroid based on my labs since Dr. Lerner put me on synthroid. She did suggest I get tested for prenicious anemia (an autoimmune disease different than anemia) based on a family history of it and the size of my red blood cells. I am currently waiting for those results.
I saw Dr.Lerner two weeks ago and he added Tagmet to the Valtrex that he has me on for EB (and the topomax and inderol for headaches). He explained that it would be kind of like a booster to the Valtrex. Within a week on the Tagamet I started getting very dizzy and throwing up. I also started feeling depressed. I thought this was just because of my seemingly downhill circumstances. However, after several days of vomiting I looked up the side effects of Tagamet and I found out that 74% of people feel nauseous the first month they use it and that depression is the number one side effect. I stopped taking it immediately.
We seemed to have hit a fork in the road and are not sure which way to go. We are clinging to His promises:
Isaiah 40:31
but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
I saw Dr.Lerner two weeks ago and he added Tagmet to the Valtrex that he has me on for EB (and the topomax and inderol for headaches). He explained that it would be kind of like a booster to the Valtrex. Within a week on the Tagamet I started getting very dizzy and throwing up. I also started feeling depressed. I thought this was just because of my seemingly downhill circumstances. However, after several days of vomiting I looked up the side effects of Tagamet and I found out that 74% of people feel nauseous the first month they use it and that depression is the number one side effect. I stopped taking it immediately.
We seemed to have hit a fork in the road and are not sure which way to go. We are clinging to His promises:
Isaiah 40:31
but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Saturday, July 13, 2013
Toxic
About a month ago I got an eye infection. Then, other "random" things started happening. I got blisters in my throat. I stopped urinating for 24 hours, I got rashes. I wrote all these things off, but the eye infection wouldn't go away. I ended up at the eye doctor 5 times. By the end she said she thought it was systemic and wanted to do lab work. It finally clicked that I should call Dr.Lerner. When we went into see him he said I was having a very rare toxic reaction and I had to stop the Valcyte immediately. (I was on 1800 mg) That was 3 days ago. Since then I have had very foggy thinking, heart palpatations and have had to sleep more than normal. We will meet with Dr. Lerner again in one week.
I forgot to post that a few weeks ago I went to Henry Ford for a second opinion in their infectious diseases department. They do not think it is Epstein Barr, but rather fibro and a thyroid problem. We disagree with the fibro diagnosis based on my symptoms over the last two years and my lab results but agree that my thyroid should be looked into. I have an appt with an endocrinologist this week.
I forgot to post that a few weeks ago I went to Henry Ford for a second opinion in their infectious diseases department. They do not think it is Epstein Barr, but rather fibro and a thyroid problem. We disagree with the fibro diagnosis based on my symptoms over the last two years and my lab results but agree that my thyroid should be looked into. I have an appt with an endocrinologist this week.
Wednesday, June 19, 2013
Steady but difficult
I continue down this path trying to keep a good attitude. It has been one year since I have been diagnosed. I am definitely better than I was a year ago, but outside my immediate family it probably isn't recognizable. I still am not very social because loud noises and lots of activity are draining. But, on the positive side I have about 2 hours in the morning that I am up and about, about to do housework or go to the doctors without feeling pain or fatigue. I still sleep from about 12:30/1:00 until 4:00 when I can and then I'm able to spend time with the kids for another couple of hours until Jim gets home. But, when he gets home I am physically wiped and in a great deal of muscle pain for the rest of the night. I saw a quote from a the past president of the chronic fatigue association that helped me remember that I am not the only one. She used to work doing research for both AIDS and chronic fatigue and now she strictly does chronic fatigue. Here is what she said:
"My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."
I also listened to a panel of CFS patients at a conference talking about living with chronic fatigue. One said that the way he copes is that he stopped believing in miracles and just accepts his lot in life. Well, I have not stopped believing in miracles. I hold on to the hope that Paul speaks of in Romans that "the power that raised Christ from the dead lives in me." It is that God that will one day make me completely well.
"My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."
I also listened to a panel of CFS patients at a conference talking about living with chronic fatigue. One said that the way he copes is that he stopped believing in miracles and just accepts his lot in life. Well, I have not stopped believing in miracles. I hold on to the hope that Paul speaks of in Romans that "the power that raised Christ from the dead lives in me." It is that God that will one day make me completely well.
Tuesday, May 14, 2013
I think it is happening...
I think it is happening. Real improvement. I don't know if anyone outside my immediate family would notice but some changes are starting to happen. It isn't so hard to get out of bed in the morning. (I took the kids to school yesterday morning for the first time since January!) I am not in pain every night. It is still very easy for me to over do it. The other day I tried a few small, short social engagements and then felt like I had a horrible flu again for the next 4 days. So, I'm kind of finding a new balance. But, my day is starting to including some things it hasn't in a long time.
At the same time Bible verses are popping up all over the place about patience. I know I am supposed to take this slow and not rush it. It is so easy to want to jump back into moving full speed ahead. I have my monthly blood draw in 2 weeks so hopefully the numbers will match up with how I feel!
At the same time Bible verses are popping up all over the place about patience. I know I am supposed to take this slow and not rush it. It is so easy to want to jump back into moving full speed ahead. I have my monthly blood draw in 2 weeks so hopefully the numbers will match up with how I feel!
Monday, May 6, 2013
Letter to Prayer Warriors
Here is a copy of an email Jim sent out last night to friends and family who have offered to pray for us.
FROM JIM:
Thank you for coming to our aid! It was just over a month ago we sent out our plea for your prayers. Our circumstances haven't changed much since then, but we certainly have. The dark, wet blanket that seemed to cover our family steadily lifted as the month progressed. We are peaceful, hopeful, thankful. I'm still tired...but it is a normal tired given the circumstances.
The biggest challenge we face is Shannon's health. I'll let her speak to that below, but I ask that you would continue to pray for her healing as you have energy to do so.
Thank you for loving us and caring for us so well.
Love,
Jim
FROM SHANNON:
Thank you so much for praying, fasting and supporting us throughout the month of April. We have an encouraging report. While I have not been instantaneously healed, I do believe my health has started to improve over the past two weeks. Specifically, I have been able to go longer in the morning being out of bed without getting so tired. Some afternoons I have energy to play with the kids for an hour. These are huge improvements! Yet the muscle/joint pain and migraines still plague me and evenings are the hardest, often keeping me from interacting with my family. My doctor says all these symptoms are completely consistent with the virus and that we're on track despite how long it is taking.
It was not too many months ago that I remember telling a friend I couldn't imagine what life would look like if I was healthy. Interestingly, starting last week I've had nightly dreams (that I believe are from God) of different scenarios of me doing all the things I used to do when I was healthy--from playing with the kids to riding bikes to hosting parties. When I lay down to nap in the afternoon the same thing happens only I am awake. It is like a movie plays with all these great scenes of me being active. And I'm not trying--it just flows out of me. Quite surreal!
On Friday Grant got in the car after school and showed me a picture he drew that day. He said it was of me lifting weights "because I know you are getting better mom!" This is a radical change in his attitude. It wasn't long ago that he asked Jim--"Does mom even know how to ride a bike?"
I truly believe I have turned a corner. Thank you, God. And thank you friends and family for praying. Please keep praying! I hope to send you another update soon--after a family bike ride!
Love,
Shannon
FROM JIM:
Thank you for coming to our aid! It was just over a month ago we sent out our plea for your prayers. Our circumstances haven't changed much since then, but we certainly have. The dark, wet blanket that seemed to cover our family steadily lifted as the month progressed. We are peaceful, hopeful, thankful. I'm still tired...but it is a normal tired given the circumstances.
The biggest challenge we face is Shannon's health. I'll let her speak to that below, but I ask that you would continue to pray for her healing as you have energy to do so.
Thank you for loving us and caring for us so well.
Love,
Jim
FROM SHANNON:
Thank you so much for praying, fasting and supporting us throughout the month of April. We have an encouraging report. While I have not been instantaneously healed, I do believe my health has started to improve over the past two weeks. Specifically, I have been able to go longer in the morning being out of bed without getting so tired. Some afternoons I have energy to play with the kids for an hour. These are huge improvements! Yet the muscle/joint pain and migraines still plague me and evenings are the hardest, often keeping me from interacting with my family. My doctor says all these symptoms are completely consistent with the virus and that we're on track despite how long it is taking.
It was not too many months ago that I remember telling a friend I couldn't imagine what life would look like if I was healthy. Interestingly, starting last week I've had nightly dreams (that I believe are from God) of different scenarios of me doing all the things I used to do when I was healthy--from playing with the kids to riding bikes to hosting parties. When I lay down to nap in the afternoon the same thing happens only I am awake. It is like a movie plays with all these great scenes of me being active. And I'm not trying--it just flows out of me. Quite surreal!
On Friday Grant got in the car after school and showed me a picture he drew that day. He said it was of me lifting weights "because I know you are getting better mom!" This is a radical change in his attitude. It wasn't long ago that he asked Jim--"Does mom even know how to ride a bike?"
I truly believe I have turned a corner. Thank you, God. And thank you friends and family for praying. Please keep praying! I hope to send you another update soon--after a family bike ride!
Love,
Shannon
Tuesday, April 16, 2013
Same Old, Same Old
I have not written in a while because not much has changed. I am on the maximum dose of Valcyte (1800mg/day) and spend most of my time resting in my recliner or sleeping in my bed. I am very fatigued throughout the day and in a lot of muscle pain in the evening. I continue to see Dr.Lerner at least 1x/mo to get EKG and blood tests to make sure all is well. I hope to report some positive changes soon.
Wednesday, March 27, 2013
Endurance
2 weeks ago Dr.Lerner increased my Valcyte dose to 3 450mg pills/day. He will check my blood next week to make sure it is okay and then we will go up to 4 pills a day- the full dose. I can't believe I have not been on the full dose!? I have been holding steady physically, continuing to spend my days in pain management through acupuncture, chiropractic and most recently gentle yoga (2x/wk). I have found that I can do one thing a day without resulting in a crash.
We have had a hard couple of weeks emotionally and have been growing weary. Chronic illness can really take a toll on a marriage and on kids. It is hard on friendships. There are only so many meals one can bring, so many times they can listen to you tell them how much pain you are in. Encouragement came the other day when a friend reminded me how much we endured in the time surrounding Grant's birth. (www.grantsamuel.blogspot.com) Since then, seemingly out of the blue others have been giving me Bible verses on patience and endurance. Throughout the week I've gained strength reflecting on how faithful God was to us during that "Grant season." Then, today, a package arrived FedEx. Inside was a beautifully wrapped DVD titled "Grant's Story." 6 1/2 years ago, our friend (and now well known videographer) offered to film Grant's birth, interview us afterward, collect photos and put together a video about Grant. Well, life got busy and we never got to see the finished product. Today, in my hand, I held the finished product. It is such a gift to me and perhaps most of all a reminder of God's faithfulness when I needed it most.
We have had a hard couple of weeks emotionally and have been growing weary. Chronic illness can really take a toll on a marriage and on kids. It is hard on friendships. There are only so many meals one can bring, so many times they can listen to you tell them how much pain you are in. Encouragement came the other day when a friend reminded me how much we endured in the time surrounding Grant's birth. (www.grantsamuel.blogspot.com) Since then, seemingly out of the blue others have been giving me Bible verses on patience and endurance. Throughout the week I've gained strength reflecting on how faithful God was to us during that "Grant season." Then, today, a package arrived FedEx. Inside was a beautifully wrapped DVD titled "Grant's Story." 6 1/2 years ago, our friend (and now well known videographer) offered to film Grant's birth, interview us afterward, collect photos and put together a video about Grant. Well, life got busy and we never got to see the finished product. Today, in my hand, I held the finished product. It is such a gift to me and perhaps most of all a reminder of God's faithfulness when I needed it most.
Monday, March 4, 2013
The Hidden Treasure
It has been 9 months since I have exercised. I have been having a lot of pain in my muscles due to inactivity so I decided to try a "healing yoga" class I've been eyeing. The last time I really did yoga was 7 years ago before I had Grant. I had butterflies in my stomach as I entered the studio, not knowing if I would be able to make it through the session.
The instructor began class with us lying on the floor as she recounted a true story about a man from New Mexico who hid his money in the mountains and left clues for others to find his goods. She drew the parallel that there was some hidden good that would come out of all of our situations. As she started talking tears welled up in my eyes. A feeling of thankfulness in the midst of my brokenness overcame me. I was reminded of the story in the Bible: (Matthew 13:44-45)
"The kingdom of heaven is like treasure hidden in a field. When a man found it, he hid it again, and then in his joy went and sold all he had and bought that field. Again, the kingdom of heaven is like a merchant looking for fine pearls. When he found one of great value, he went away and sold everything he had and bought it."
These parables teach the same lesson—the kingdom of heaven is of inestimable value. Jesus is telling us it is worth giving all we have to possess the kingdom. In both these parables the treasure is hidden. The only thing that is clear is that the kingdom of God is easy to miss.
The instructor began class with us lying on the floor as she recounted a true story about a man from New Mexico who hid his money in the mountains and left clues for others to find his goods. She drew the parallel that there was some hidden good that would come out of all of our situations. As she started talking tears welled up in my eyes. A feeling of thankfulness in the midst of my brokenness overcame me. I was reminded of the story in the Bible: (Matthew 13:44-45)
"The kingdom of heaven is like treasure hidden in a field. When a man found it, he hid it again, and then in his joy went and sold all he had and bought that field. Again, the kingdom of heaven is like a merchant looking for fine pearls. When he found one of great value, he went away and sold everything he had and bought it."
These parables teach the same lesson—the kingdom of heaven is of inestimable value. Jesus is telling us it is worth giving all we have to possess the kingdom. In both these parables the treasure is hidden. The only thing that is clear is that the kingdom of God is easy to miss.
Saturday, February 16, 2013
Valcyte 1 month
I just hit the one month mark of being on Valcyte. I officially feel terrible. The new added bonus is nausea that comes on soon after I take it each morning. Yesterday Dr. Lerner gave me Zofran to help with the nausea. I've started getting headaches again (taking inderol for this) and having daily muscle pain (hot baths) and fatigue.
We hired some help with the kids and the housekeeping so that I can focus more on resting and less on managing. Dr. Lerner has been encouraging me to do this for about 6 months and was very enthusiastic that I finally did it so that we can see what happens when I get even more rest. (In bed about 20 hours a day now.)
I'm only sleeping about 10 hours a day. I feel extremely fatigued the rest of the time but anxiety is keeping me from actually sleeping more. Doc says this is okay for now as long as I'm resting. Hopefully as the nausea and anxiety die down I'll be able to sleep more and have a shot at a little more refreshment.
I'm reading a book from the UK about people who have been healed/recovered from CFS. One of the patients suggests falling asleep picturing something you want to do when you are well. In all honesty, I can't really picture myself well anymore. When I try to picture a scene I always picture myself tired and unable to keep up those whom I'm in the scene with. I can tell I'm at a point of needing hope that I will be well.
I asked Dr.Lerner's nurse on Friday if I could get in contact with one of his patients who she has seen get well. She got permission from the patient and then gave me the number of Carol*. (Not her real name.) She flies in all the way from the West Coast to see Dr. Lerner. When she first started seeing him in 2010 she was wheelchair bound because of her fatigue. Today she works out with a personal trainer and enjoys a full life. We had a great conversation and I was very encouraged. God is on the move. I am doing my best to trust not in my circumstances but in His character. He is good.
We hired some help with the kids and the housekeeping so that I can focus more on resting and less on managing. Dr. Lerner has been encouraging me to do this for about 6 months and was very enthusiastic that I finally did it so that we can see what happens when I get even more rest. (In bed about 20 hours a day now.)
I'm only sleeping about 10 hours a day. I feel extremely fatigued the rest of the time but anxiety is keeping me from actually sleeping more. Doc says this is okay for now as long as I'm resting. Hopefully as the nausea and anxiety die down I'll be able to sleep more and have a shot at a little more refreshment.
I'm reading a book from the UK about people who have been healed/recovered from CFS. One of the patients suggests falling asleep picturing something you want to do when you are well. In all honesty, I can't really picture myself well anymore. When I try to picture a scene I always picture myself tired and unable to keep up those whom I'm in the scene with. I can tell I'm at a point of needing hope that I will be well.
I asked Dr.Lerner's nurse on Friday if I could get in contact with one of his patients who she has seen get well. She got permission from the patient and then gave me the number of Carol*. (Not her real name.) She flies in all the way from the West Coast to see Dr. Lerner. When she first started seeing him in 2010 she was wheelchair bound because of her fatigue. Today she works out with a personal trainer and enjoys a full life. We had a great conversation and I was very encouraged. God is on the move. I am doing my best to trust not in my circumstances but in His character. He is good.
Thursday, February 7, 2013
Just the facts
Really too tired to type...
Feel like I have been hit by a bus.
Pain up and down the muscles next to my spine up through my neck and my upper arms and shoulders.
Bad, bad joint pain in my knees so much so that it hurts to walk.
Headache.
Nausea.
Laying down 20-22 hours a day.
Not sleeping all of that though.
Been anxious lately. Will this ever go?
Proverbs 3:4-5 He says.
Feel like I have been hit by a bus.
Pain up and down the muscles next to my spine up through my neck and my upper arms and shoulders.
Bad, bad joint pain in my knees so much so that it hurts to walk.
Headache.
Nausea.
Laying down 20-22 hours a day.
Not sleeping all of that though.
Been anxious lately. Will this ever go?
Proverbs 3:4-5 He says.
Wednesday, January 30, 2013
1 Week In
I have been on Valcyte one week. The differences between being on the Valtrex and Valcyte are clear but not extreme. I am back to two naps on Valcyte. I have been getting about 11 hours of sleep at night. (It would probably be more if not for the scampering of little feet.) After breakfast and some reading I get that feeling I had when I first started the Valtrex where I have no choice but to sleep. After lunch I get in another nap while fading in and out of guided meditations on youtube until my alarm goes off to remind my body of the most important part of the day- picking up the kids from school!
I have learned to delegate a lot of responsibilities during this season, I want school pick up all to myself. I love the way the kids see my car in line and start to smile. Sometimes they even come out of school holding hands or skipping together. When they get in the car they both rush the front seat to try to be the first to talk. The whole thing completely energizes me and puts a smile on my face. Sometimes, if I'm having a good day we'll stop at Starbucks on the way home for a hot chocolate.
I have released myself from all other responsibilities- cooking, cleaning, grocery shopping- and delegated them to someone else. There is a huge amount of freedom in allowing my body to follow its desired rhythm of rest. Dr.Lerner has been telling me this for months but I insisted on continuing on in my state on exhaustion. I thought I would find guilt in rest, but I'm finding freedom!
The most difficult part of being on the Valcyte has been the extreme pain in my neck and upper back that I've been getting in the evenings. I don't know how to explain it because it is like nothing I've ever felt until my life was altered by CF. Different nights I try different things. Some nights it is a scalding hot bath. Other nights it is ice. Other nights Jim generously gives me a massage or I lay on a Migun bed. Sometimes it helps to talk to distract me. Sometimes I can't open my mouth because it takes focus not to cry. Simply put, my prayer today is that this nightly muscle pain would go away.
I have learned to delegate a lot of responsibilities during this season, I want school pick up all to myself. I love the way the kids see my car in line and start to smile. Sometimes they even come out of school holding hands or skipping together. When they get in the car they both rush the front seat to try to be the first to talk. The whole thing completely energizes me and puts a smile on my face. Sometimes, if I'm having a good day we'll stop at Starbucks on the way home for a hot chocolate.
I have released myself from all other responsibilities- cooking, cleaning, grocery shopping- and delegated them to someone else. There is a huge amount of freedom in allowing my body to follow its desired rhythm of rest. Dr.Lerner has been telling me this for months but I insisted on continuing on in my state on exhaustion. I thought I would find guilt in rest, but I'm finding freedom!
The most difficult part of being on the Valcyte has been the extreme pain in my neck and upper back that I've been getting in the evenings. I don't know how to explain it because it is like nothing I've ever felt until my life was altered by CF. Different nights I try different things. Some nights it is a scalding hot bath. Other nights it is ice. Other nights Jim generously gives me a massage or I lay on a Migun bed. Sometimes it helps to talk to distract me. Sometimes I can't open my mouth because it takes focus not to cry. Simply put, my prayer today is that this nightly muscle pain would go away.
Tuesday, January 22, 2013
And so we begin
Tomorrow is the big day. I start on one Valcyte pill and by the weekend will be up to 2 pills every morning. That's a lovely $120/day worth of Valcyte. Note to self: watch the drain when talking pills. Thankfully I have a husband who reminds me that everything we have belongs to God anyway.
Is it the right choice? Well, I spent a lot of time over the weekend doing research on Valcyte after the pushback I got from family and friends for taking a drug with so many risks. After much prayer and the youtube video of Dr.Montoya's research of Valcyte's effectiveness I feel certain we are taking the right approach. I am hopeful and dare I say excited to pop my first pill tomorrow morning! When I think about the next phase of my journey this verse comes to mind:
"For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland."
Isaiah 43:19 NLT
Thank you, God, for bringing me to this place. For providing great medical care, for providing loving care for the kids through school and our new nanny, for our strong family that has provided emotional and financial support, for the intimacy that you have brought to our marriage through this challenge and for your continued extravagant goodness.
Is it the right choice? Well, I spent a lot of time over the weekend doing research on Valcyte after the pushback I got from family and friends for taking a drug with so many risks. After much prayer and the youtube video of Dr.Montoya's research of Valcyte's effectiveness I feel certain we are taking the right approach. I am hopeful and dare I say excited to pop my first pill tomorrow morning! When I think about the next phase of my journey this verse comes to mind:
"For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland."
Isaiah 43:19 NLT
Thank you, God, for bringing me to this place. For providing great medical care, for providing loving care for the kids through school and our new nanny, for our strong family that has provided emotional and financial support, for the intimacy that you have brought to our marriage through this challenge and for your continued extravagant goodness.
Thursday, January 17, 2013
A new direction
It has been a long time since I've written, basically because not much has changed. For the last few months I've been stuck around a 4 on Dr.Lerner's 10 point scale. (I was a 4 when I came in.) Basically that means I am off the couch 4-6 hours a day, with minimal socializing or work. I spend most days laying down and have not taken a day off napping yet! (Down to one nap most days though.)
Because it has been 7 months of not much improvement Dr.Lerner would like to go in a new direction. This is standard operating procedure for him at this point in a patient's journey. He would like to put me on 450mg of Valcyte a day. Not every doctor would take this route. Most doctors in the US at this point would say that this is as far as they can take me and that it is time to start to manage my symptoms and learn to live this new lifestyle. They suggest meditation, gluten free diet, antidepressants etc. But, Dr.Lerner and Dr.Montoya (out of Standford) have done extensive research that Valcyte can actually get rid of enough of the virus to life an active lifestyle.
The downside of Valcyte (and of all intense medications) is that there are both risks and side effects. After weighing the risks Jim and I have decided that we'd rather take the risk and ask for a lot of prayer than settle in to this rather exhausting lifestyle. As always, Dr. Lerner will be doing monthly blood tests and EKGs to monitor what he can. Here we go...
Because it has been 7 months of not much improvement Dr.Lerner would like to go in a new direction. This is standard operating procedure for him at this point in a patient's journey. He would like to put me on 450mg of Valcyte a day. Not every doctor would take this route. Most doctors in the US at this point would say that this is as far as they can take me and that it is time to start to manage my symptoms and learn to live this new lifestyle. They suggest meditation, gluten free diet, antidepressants etc. But, Dr.Lerner and Dr.Montoya (out of Standford) have done extensive research that Valcyte can actually get rid of enough of the virus to life an active lifestyle.
The downside of Valcyte (and of all intense medications) is that there are both risks and side effects. After weighing the risks Jim and I have decided that we'd rather take the risk and ask for a lot of prayer than settle in to this rather exhausting lifestyle. As always, Dr. Lerner will be doing monthly blood tests and EKGs to monitor what he can. Here we go...
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