Well, started thyroid meds 2 weeks ago. NatureThroid brand, 1/4 grain. Can't say I see any effects yet. I may even feel worse? Hard to tell if it's the thyroid meds or it's being off antibiotics for first time in 8 or 9 months.
Have been off antibiotics for at least 3 weeks now. Plan is to shell out some hefty amounts of cash for a co-infection panel through Fry labs, which will also include a blood smear and IFA testing.
Since being off Ab, increased floaters in eyes and general eye irritation. Mainly left eye. Buzzing/numbness/vibration feeling in left foot. Kind of a pulsing feeling.
Monday, October 22, 2012
Thursday, August 23, 2012
Lyme and what to do now...
Received Igenex results a few weeks ago. Appear to be equivocal. Have tested positive for one double-starred band, and one non-starred band (58). My doctor has decided that we will continue to treat this as Lyme disease. I'm still on minocin and zithromax, and doc wanted to add in Flagyl (cyst buster).
Now, I had read that nerve damage is a rare side effect of taking Flagyl, and also that it may interact with Plaquenil. So... long story short - I've quit the Plaquenil.
While waiting for the plaquenil to clear out of my system (has a long half-life of about 1-2 months), I've decided to start the Byron White formulas. I purchased the A-L formula and the A-BART (bartonella). Will start the A-Bart formula first, try it for a few weeks to get a feel for it, then add the A-L.
Quick recap of current supplements/medications:
Now, I had read that nerve damage is a rare side effect of taking Flagyl, and also that it may interact with Plaquenil. So... long story short - I've quit the Plaquenil.
While waiting for the plaquenil to clear out of my system (has a long half-life of about 1-2 months), I've decided to start the Byron White formulas. I purchased the A-L formula and the A-BART (bartonella). Will start the A-Bart formula first, try it for a few weeks to get a feel for it, then add the A-L.
Quick recap of current supplements/medications:
- Minocycline, 200mg, every other day (started December 2011)
- Zithromax, 250mg, every other day (on days not taking minocin), since May 2012
- Banyan Botanicals ayurvedic herbs - Healthy Vata
- Cymbalta, 60mg
- Night: melatonin (small amount, less than .5mg), L-Glycine, GABA, L-Glutamine, Magnesium malate
- Buffered Vitamin C (with rutin), Vitamin D3, Malic Acid, D-Ribose, Multivitamin, Calcium citrate, the list goes on...
Sunday, July 8, 2012
Off the Prednisone
Have now been off prednisone for about 1 week. My shin rash is slowly diminishing. I started taking 500mg of Taurine at night before bed and it seems to have helped my muscle pain significantly.
Stopped by the community health center last week for an ophthalmologist appointment. Eye dryness is minor said the doc after using the yellow dye. So that's good news.
Continuing to take Zithromax though only about once a week because it does quite a number on my stomach. It has a long half-life, though, so dosing every other day shouldn't really be necessary.
Lyme test results came back as "equivocal", so am now supposed to be getting tested for band 31 kDa. The journey continues...
Stopped by the community health center last week for an ophthalmologist appointment. Eye dryness is minor said the doc after using the yellow dye. So that's good news.
Continuing to take Zithromax though only about once a week because it does quite a number on my stomach. It has a long half-life, though, so dosing every other day shouldn't really be necessary.
Lyme test results came back as "equivocal", so am now supposed to be getting tested for band 31 kDa. The journey continues...
Tuesday, May 29, 2012
The persistent rash...
My rash was gone. Then it came back. Story of my life, honestly. Hahaha. When I drop below 2.5-3 mg prednisone, the rash on my shin returns with a vengeance. I'm really not even supposed to be on prednisone right now (meaning, my current doctor did not prescribe it for me, it's just leftover from 2009 treating myself Dr. Ashley style. Yes, I know you aren't supposed to mess around with prednisone. Yes, I'm aware of the dangers.). I don't have insurance and cannot afford to go see the doc whenever this rash rears its ugly head.
Anyways, I've read extensively about the link between thyroid antibodies and rashes and the connection is clear. When I see the doc next I might see what he thinks about treating euthyroid Hashimoto's. Not many docs are keen on the idea but it's worth a shot. I'm thinking... lowest dose of Armour thyroid, which is a combination of T4 and T3.
Anyways, I've read extensively about the link between thyroid antibodies and rashes and the connection is clear. When I see the doc next I might see what he thinks about treating euthyroid Hashimoto's. Not many docs are keen on the idea but it's worth a shot. I'm thinking... lowest dose of Armour thyroid, which is a combination of T4 and T3.
Thursday, May 17, 2012
Cannot tolerate 200mg minocin, reduce again
Since my stomach has been having issues, I have reduced the minocin again to 100mg once a day. I continue to take a probiotic supplement, Jarrow Formulas AF with 10 billion strains.
Had bloodwork drawn yesterday, and now I am going to start Zithromax Tues./Thursday 250mg once per day.
Bloodwork didn't show any major changes, though sed rate and CRP are still low, which is great. Neutrophil count is way up. Usually it's around 53% for me, and this bloodwork showed neutrophils at 69%. I've read that an increase in neutrophils can indicate a bacterial infection. So maybe it is the strep that is just taking up residence? I suppose we'll see after starting the zithromax. MCV and MCH are still elevated slightly. Platelets still at low end of normal at 206.
Sed rate = 2, CRP <0.3 mg/L.
RBC count still low at 3.8.
TSH at 1.44, Free T3 at 2.4 pg/ml (range:2.0-4.4), Free T4 at 1.04 ng/dL (range: 0.82-1.77).
RA elevated slightly at 15.4. ANA is still positive, no big surprise there only wish I could have afforded to get the titer for the ANA.
Had bloodwork drawn yesterday, and now I am going to start Zithromax Tues./Thursday 250mg once per day.
Bloodwork didn't show any major changes, though sed rate and CRP are still low, which is great. Neutrophil count is way up. Usually it's around 53% for me, and this bloodwork showed neutrophils at 69%. I've read that an increase in neutrophils can indicate a bacterial infection. So maybe it is the strep that is just taking up residence? I suppose we'll see after starting the zithromax. MCV and MCH are still elevated slightly. Platelets still at low end of normal at 206.
Sed rate = 2, CRP <0.3 mg/L.
RBC count still low at 3.8.
TSH at 1.44, Free T3 at 2.4 pg/ml (range:2.0-4.4), Free T4 at 1.04 ng/dL (range: 0.82-1.77).
RA elevated slightly at 15.4. ANA is still positive, no big surprise there only wish I could have afforded to get the titer for the ANA.
Saturday, May 12, 2012
Ended medrol pack - increased Minocin
Well the Medrol pack is now finished and I'm on 2.5mg prednisone, hopefully tapering to none by the end of next week. The rash on my shin is now gone, but I still have some small spots on my upper back.
Yesterday I increased my minocin dosage from 100mg to my normal 200mg per day. I was taking 200mg of the generic stuff from December 2011 until the beginning of April, then switched over to brand name and it seems to be stronger so I lowered the dose to 100mg. Not sure if I'm ready to handle the 200mg yet, especially since I'm still on a small amount of prednisone, but we'll see. I'm a bit anxious to try out the Zithromax to see if it has any effect, but I think it would be best to wait a little bit and give the brand name minocin a chance to do its thang.
As far as today goes, I've noticed a significant increase in muscle pain and sacroiliac joint soreness along with that damn left knee pain that is almost a constant nowadays (as it was in pre-plaquenil days). 200mg ibuprofen earlier in the day didn't do a whole lot for the pain.
Yesterday I increased my minocin dosage from 100mg to my normal 200mg per day. I was taking 200mg of the generic stuff from December 2011 until the beginning of April, then switched over to brand name and it seems to be stronger so I lowered the dose to 100mg. Not sure if I'm ready to handle the 200mg yet, especially since I'm still on a small amount of prednisone, but we'll see. I'm a bit anxious to try out the Zithromax to see if it has any effect, but I think it would be best to wait a little bit and give the brand name minocin a chance to do its thang.
As far as today goes, I've noticed a significant increase in muscle pain and sacroiliac joint soreness along with that damn left knee pain that is almost a constant nowadays (as it was in pre-plaquenil days). 200mg ibuprofen earlier in the day didn't do a whole lot for the pain.
Tuesday, May 1, 2012
Medrol pack
Stopped by the doctor's office yesterday to pick up Zithromax that had come in from the patient assistance program. So that's great news.
In not-so-great news I am currently starting a Medrol pack to reduce inflammation and get rid of the multiple spots of itchy hives that are just begging to spread like wildfire.
I need to get this flare under control before I can even think about starting up the Zithromax. Though I did test high for strep antibodies (as well as the mycoplasma, obviously), I've read that you should be treating the strep antibodies either before or at the same time as mycoplasma.
My History:
I was diagnosed with Sjögren's syndrome (in addition to Fibromyalgia) in November of 2007. I had never heard of Sjogren's before, and wasn't even going to attempt its pronunciation.
I believe my immune problems started way back in the day when I came down with mono in the 5th grade, and then had a recurrence of it in 7th grade... and then after that I whenever I started to feel crappy again it was simply assumed to be associated with past bouts of mono. I never was the same after that.
Many years after the mono business, while in college, I was referred to a rheumatologist - Dr.Carol Beals in Lansing, MI - whom I no longer see, unfortunately, because she is a wonderful, intelligent, and caring doctor. I saw her for 3 years and then had to stop due to my lack of health insurance.
Bloodwork done by Dr. Beals showed that I had been exposed to Parvovirus B19 at some point in my life. The parvovirus exposure, in addition to the mononucleosis, most likely led to my increased sensitivity to autoimmune problems. The fact that my maternal grandmother had lupus (and died of complications due to it) was not helping my genetic case any.
My initial symptoms were overwhelming fatigue, joint paint (mainly my knees and hips), trouble concentrating, problems with word retrieval, loss of hair, muscle pain, depression, and horribly itchy skin rashes. I was started on 400mg of Plaquenil in summer of 2008, and continue to take it without (many) problems. My skin rashes are a bit worse on the Plaquenil, an overall increase in skin sensitivity, but I do believe that the Plaquenil helps with fatigue and joint pain. So... I took the trade-off and keep a tube of hydrocortisone cream with me at all times and steroid cream for the tough times.
In 2009, I had a lymph node removed in my neck due to enlargement and an oncologist's suspicions. It was not cancerous! Many people with Sjogren's syndrome are at a significantly increased risk for Lymphoma.
December 2010: Thyroid antibodies detected. Anti-thyroid peroxidase (TPO) to be exact. I also had my DHEA-S levels tested (serum and saliva), and were found to be low.
May 2011: I had my second Laparoscopic surgery for ovarian cysts/endometriosis. Of course, after the surgery I was told to take hormonal birth control pills to control the endometriosis, which tends to worsen my Sjogren's symptoms (and I don't really believe in taking synthetic hormones). I feel that you need to find the root cause of the hormone imbalance, and fix that. Most doctors are "glorified drug-dealers", and would rather throw some pills your way than to investigate symptoms in order to find a root cause because that would be expensive for insurance companies. And would actually require some effort. But I digress.
Nov. 2011:
Had blood work done for food allergy detection. The delayed sort of allergy, that is. Which tests for IgG antibodies versus the IgE ones which are typically the result of an immediate allergic reaction. Allergy testing results show that I have an allergy to Baker's yeast and Brewer's yeast, which I had already suspected. This also means no vinegar, miso, mustard, ketchup, etc. Mild reactivity to bananas, peanuts, eggs, oats, soy, and oranges. I've switched out my peanut butter for sunbutter (made with sunflower seeds), and am now eating Perky's crunchy flax cereal for breakfast instead of my usual granola.
Dec. 2011:
Seeing a new doctor here in Chicago and was tested for mycoplasma antibodies, which are thought to be linked to autoimmune diseases (mainly rheumatoid arthritis). Tested positive forMycoplasma pneumoniae antibodies and elevated strep antibodies. Started 200mg minocycline every day and will continue low dose antibiotic therapy for at least the next 6 months. For more information on autoimmune disease and mycoplasma infection, check out this site: rheumatic.org
Supplements added to regimen: Banyan Botanicals Healthy Vata, L-Methionine, L-Glycine, GABA, 7-keto-DHEA 25mg.
April 2012:
I just got the results back from my saliva testing (via snail mail) through ZRT labs, and results show that I have some issues with the rhythm of my cortisol levels. I suspected this, along with the thyroid problems/symptoms (which are still going untreated). High-normal "morning" cortisol levels, which drop sharply by "noon", only to rise again (abnormal) for "afternoon" and "evening" times, which explains why I need to take sleepy time supplements in order to fall asleep at night. And even then I don't get to sleep until around 2am.
Medication switch: from generic to brand name Minocin
In not-so-great news I am currently starting a Medrol pack to reduce inflammation and get rid of the multiple spots of itchy hives that are just begging to spread like wildfire.
 |
| Shin rash |
My History:
I was diagnosed with Sjögren's syndrome (in addition to Fibromyalgia) in November of 2007. I had never heard of Sjogren's before, and wasn't even going to attempt its pronunciation.
I believe my immune problems started way back in the day when I came down with mono in the 5th grade, and then had a recurrence of it in 7th grade... and then after that I whenever I started to feel crappy again it was simply assumed to be associated with past bouts of mono. I never was the same after that.
Many years after the mono business, while in college, I was referred to a rheumatologist - Dr.Carol Beals in Lansing, MI - whom I no longer see, unfortunately, because she is a wonderful, intelligent, and caring doctor. I saw her for 3 years and then had to stop due to my lack of health insurance.
Bloodwork done by Dr. Beals showed that I had been exposed to Parvovirus B19 at some point in my life. The parvovirus exposure, in addition to the mononucleosis, most likely led to my increased sensitivity to autoimmune problems. The fact that my maternal grandmother had lupus (and died of complications due to it) was not helping my genetic case any.
My initial symptoms were overwhelming fatigue, joint paint (mainly my knees and hips), trouble concentrating, problems with word retrieval, loss of hair, muscle pain, depression, and horribly itchy skin rashes. I was started on 400mg of Plaquenil in summer of 2008, and continue to take it without (many) problems. My skin rashes are a bit worse on the Plaquenil, an overall increase in skin sensitivity, but I do believe that the Plaquenil helps with fatigue and joint pain. So... I took the trade-off and keep a tube of hydrocortisone cream with me at all times and steroid cream for the tough times.
In 2009, I had a lymph node removed in my neck due to enlargement and an oncologist's suspicions. It was not cancerous! Many people with Sjogren's syndrome are at a significantly increased risk for Lymphoma.
December 2010: Thyroid antibodies detected. Anti-thyroid peroxidase (TPO) to be exact. I also had my DHEA-S levels tested (serum and saliva), and were found to be low.
May 2011: I had my second Laparoscopic surgery for ovarian cysts/endometriosis. Of course, after the surgery I was told to take hormonal birth control pills to control the endometriosis, which tends to worsen my Sjogren's symptoms (and I don't really believe in taking synthetic hormones). I feel that you need to find the root cause of the hormone imbalance, and fix that. Most doctors are "glorified drug-dealers", and would rather throw some pills your way than to investigate symptoms in order to find a root cause because that would be expensive for insurance companies. And would actually require some effort. But I digress.
Nov. 2011:
Had blood work done for food allergy detection. The delayed sort of allergy, that is. Which tests for IgG antibodies versus the IgE ones which are typically the result of an immediate allergic reaction. Allergy testing results show that I have an allergy to Baker's yeast and Brewer's yeast, which I had already suspected. This also means no vinegar, miso, mustard, ketchup, etc. Mild reactivity to bananas, peanuts, eggs, oats, soy, and oranges. I've switched out my peanut butter for sunbutter (made with sunflower seeds), and am now eating Perky's crunchy flax cereal for breakfast instead of my usual granola.
Dec. 2011:
Seeing a new doctor here in Chicago and was tested for mycoplasma antibodies, which are thought to be linked to autoimmune diseases (mainly rheumatoid arthritis). Tested positive forMycoplasma pneumoniae antibodies and elevated strep antibodies. Started 200mg minocycline every day and will continue low dose antibiotic therapy for at least the next 6 months. For more information on autoimmune disease and mycoplasma infection, check out this site: rheumatic.org
Supplements added to regimen: Banyan Botanicals Healthy Vata, L-Methionine, L-Glycine, GABA, 7-keto-DHEA 25mg.
April 2012:
I just got the results back from my saliva testing (via snail mail) through ZRT labs, and results show that I have some issues with the rhythm of my cortisol levels. I suspected this, along with the thyroid problems/symptoms (which are still going untreated). High-normal "morning" cortisol levels, which drop sharply by "noon", only to rise again (abnormal) for "afternoon" and "evening" times, which explains why I need to take sleepy time supplements in order to fall asleep at night. And even then I don't get to sleep until around 2am.
Medication switch: from generic to brand name Minocin
Saturday, April 28, 2012
In the midst of a flare
Updates on Antibiotic therapy - switched over to brand name Minocin
Since starting the brand name Minocin about 2 weeks ago, I haven't been feeling well. Don't know if I can attribute this to a Herxheimer reaction or what? Previously, I had been on the generic form of minocycline since December 2011. With the generic I didn't really feel a herxing at all, but I did end up getting sick (not sure if it was a cold, really) at the end of December. It was a complete mixed bag of symptoms, running the gamut from muscle pain to night sweats to sinus drainage to nausea. The whole shebang. I have to admit I'm a bit skeptical as to whether or not the Mycoplasma are playing a role in my autoimmunity/symptoms. I'm trying to be very careful with attributing my symptoms to flares, herxheimer reaction, or just plain old autoimmune bullshit. I'd love to be able to admit that I am 100% sure that what I'm feeling is a herx reaction, but I honestly don't know. What I do know is that since starting the antibiotic protocol in December, I've never felt worse. Which is a good sign, I suppose.
Unfortunately, I also ran out of Plaquenil (generic) a few days after starting the Minocin, and was off the plaquenil for almost 2 weeks. In these 2 weeks I've had a increase in muscle pain all throughout my body, but mainly some severe pain in my neck (cervical vertebrae) running up the muscles through the occipital bone at the base of the skull. My left knee pain has returned, and it usually doesn't bother me at all when I'm taking Plaquenil (which is good, though, because it shows that the Plaquenil is working to some degree). In addition, the bursitis in my right hip is giving me some trouble and ibuprofen barely touches it.
Tramadol helps to take the edge off the pain, but the pain and discomfort is still there. I really don't like taking tramadol considering it acts similar to an SSRI, gives me a small headache, and I'm already on a high dose of Cymbalta (an SSNRI). I don't like to mix the two drugs together.
I have some leftover prednisone from a horrible itchy rash that I developed in 2009, and have taken it upon myself to treat my current symptoms with a small burst of low-dose prednisone, 5mg a day. The rash has appeared again, making its debut about 2 months ago (as it seems to do every year now since 2009). The rash is mainly confined to the groin region, lower abdominal area, saving the worst of it for one of my shins. The rash doesn't respond well to hydrocortisone cream (though I continue to use it), I usually end up using an ice pack over the rash for a few minutes to dull the itchy feeling. Typical antihistamines (benadryl, etc.) don't work on these rashes, either. At night, if the rash is so bad that I can't sleep, I end up taking Atarax (Hydroxyzine). I hate to take this medication as well, because it tends to make my hypothyroid symptoms worse, and seems to linger in my system for 1-2 days following the dose making me feel like a zombie.
The pharmacy also magically filled my plaquenil. I was under the impression that the script had expired, but shiiiit, I'm not going to complain! Either way, I have plaquenil for another 60 days and started taking it again 3 days ago.
Started doing veggie juices again about 4 days ago. I try to make one a day to help with detoxing. Last night's was super salty tasting and consisted of: celery, ginger root, lemon, spinach, golden beet, and carrots.
Since starting the brand name Minocin about 2 weeks ago, I haven't been feeling well. Don't know if I can attribute this to a Herxheimer reaction or what? Previously, I had been on the generic form of minocycline since December 2011. With the generic I didn't really feel a herxing at all, but I did end up getting sick (not sure if it was a cold, really) at the end of December. It was a complete mixed bag of symptoms, running the gamut from muscle pain to night sweats to sinus drainage to nausea. The whole shebang. I have to admit I'm a bit skeptical as to whether or not the Mycoplasma are playing a role in my autoimmunity/symptoms. I'm trying to be very careful with attributing my symptoms to flares, herxheimer reaction, or just plain old autoimmune bullshit. I'd love to be able to admit that I am 100% sure that what I'm feeling is a herx reaction, but I honestly don't know. What I do know is that since starting the antibiotic protocol in December, I've never felt worse. Which is a good sign, I suppose.
Unfortunately, I also ran out of Plaquenil (generic) a few days after starting the Minocin, and was off the plaquenil for almost 2 weeks. In these 2 weeks I've had a increase in muscle pain all throughout my body, but mainly some severe pain in my neck (cervical vertebrae) running up the muscles through the occipital bone at the base of the skull. My left knee pain has returned, and it usually doesn't bother me at all when I'm taking Plaquenil (which is good, though, because it shows that the Plaquenil is working to some degree). In addition, the bursitis in my right hip is giving me some trouble and ibuprofen barely touches it.
Tramadol helps to take the edge off the pain, but the pain and discomfort is still there. I really don't like taking tramadol considering it acts similar to an SSRI, gives me a small headache, and I'm already on a high dose of Cymbalta (an SSNRI). I don't like to mix the two drugs together.
The pharmacy also magically filled my plaquenil. I was under the impression that the script had expired, but shiiiit, I'm not going to complain! Either way, I have plaquenil for another 60 days and started taking it again 3 days ago.
Started doing veggie juices again about 4 days ago. I try to make one a day to help with detoxing. Last night's was super salty tasting and consisted of: celery, ginger root, lemon, spinach, golden beet, and carrots.
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