Finally some good news - my numbers are starting to change and I have them on the run! but still have a long ways to go. My CD57 otherwise called the Stricker panel has gone up from 19 to 57 I still have a ways to go to get to 200 but I have a glimmer of hope again
Thank you for your support - what a long road, I was starting to think I might need alternative plan, it was suggested by some doctors to start thinking about Stanford or UCSF, but for now I am very happy with my current treatment. - (as happy as one can be with an IV-pic-line, a million other pills and spending thousands of dollars etc.)
There is such a difference in opinion in the medical community and not much knowledge about it "especially" out here on the West Coast. I do sometimes hesitate to talk about It or think I might be judged by those who only want to hear happy thoughts but since my journey was one incredible obstacle after another, and there was so much wasted time in-between. I think it is more important to bring awareness to this subject. I have seen and spoken to people that have been devastated and crippled by this disease and completely feel hopeless. What an education this has been and knowlege is something that should be shared.
Saturday, August 8, 2009
Parkinson's Disease or Lyme Disease
If you or anyone you love is diagnosed with Parkinson's Disease, please, please, please - see a Lyme literate Md, have a blood test through IGENEX tick borne specialty lab only ( http://www.igenex.com ). Join a lyme disease forum for patient help with finding a Lyme literate Md and how to get tested.
There are many, many stories about patients misdiagnosed for years with Parkinson's only to find out they had Chronic Lyme Disease.
For more information see the links below and check back often as more will be added as they are discovered.
A message from another forum:
Did you know that Michael J. Fox was diagnosed with lyme disease three years before being diagnosed with Parkinson? Did you know that 4 workers on his movie set were also diagnosed with Parkinson? The movie set was in Conn. - lyme country. My brother in law was diagnosed 20 years ago with Parkinson, 10 years before that he was bitten by a tick while camping. He is starting his research on the correlation between the two! My husband was diagnosed with bipolar, dementia, degeneration of the brain, parkinson, etc. etc. Four months ago he was finally tested for lyme disease tests were positive including spect scan. He has been on antibotics for four months now and doing quite well. Each month he gets better and better. I had to fight tooth and nail for a Doctor to listen to me to no avail. Finally, I took him to see a Lyme Literate Doctor and the rest is history. Just wanted you to know and to take your conditions into your own hands, the Dr.s don't know everything. We are living proof of that.
http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=10&t=777
There are many, many stories about patients misdiagnosed for years with Parkinson's only to find out they had Chronic Lyme Disease.
For more information see the links below and check back often as more will be added as they are discovered.
A message from another forum:
Did you know that Michael J. Fox was diagnosed with lyme disease three years before being diagnosed with Parkinson? Did you know that 4 workers on his movie set were also diagnosed with Parkinson? The movie set was in Conn. - lyme country. My brother in law was diagnosed 20 years ago with Parkinson, 10 years before that he was bitten by a tick while camping. He is starting his research on the correlation between the two! My husband was diagnosed with bipolar, dementia, degeneration of the brain, parkinson, etc. etc. Four months ago he was finally tested for lyme disease tests were positive including spect scan. He has been on antibotics for four months now and doing quite well. Each month he gets better and better. I had to fight tooth and nail for a Doctor to listen to me to no avail. Finally, I took him to see a Lyme Literate Doctor and the rest is history. Just wanted you to know and to take your conditions into your own hands, the Dr.s don't know everything. We are living proof of that.
http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=10&t=777
Sunday, June 14, 2009
What a long healing process
To look at me you wouldn't think anything is wrong, this is typical for many Lymes patients.
It is now hard to remember what feeling good is like. When I wake in the morning I think I might be getting better and plan for my day - then around 10-11am I still need to lay down or take a nap for a few hours this is so unlike me. I use to get up at 3:00 am in the morning to start work creating my DVDs or painting, then from 6-10am I would do my morning chores then paint again for the rest of the day. This all feels so foreign to have had to slow down so much, I realize I am lucky and am doing amazingly well for having such a low CD57 count I could be in much worse shape.
I felt better before I started the antibiotics, until the next big thing happened but this is all typical part of the healing process.
It is now hard to remember what feeling good is like. When I wake in the morning I think I might be getting better and plan for my day - then around 10-11am I still need to lay down or take a nap for a few hours this is so unlike me. I use to get up at 3:00 am in the morning to start work creating my DVDs or painting, then from 6-10am I would do my morning chores then paint again for the rest of the day. This all feels so foreign to have had to slow down so much, I realize I am lucky and am doing amazingly well for having such a low CD57 count I could be in much worse shape.
I felt better before I started the antibiotics, until the next big thing happened but this is all typical part of the healing process.
Monday, June 1, 2009
Things to know about a Pic-line
I found out a few things about the Pic-line today that would have been nice to know sooner and will hopefully be helpful to anyone else who gets one of these.
The clamp was getting very uncomfortable so a few weeks ago so I asked the nurse if she could cut it off - no problem- the next nurse that did my dressing change made it very clear that it was not a good idea because if the cleave broke I could bleed to death (nice to know). It is extremely rare, I then said to her that I had the special line that has a valve on the internal end, she then told me that this kind of IV line has only been out for about 6 months and should work fine - but did I want experiment with it. No.
The other thing she said is after doing the saline push at the end of each treatment try not push the syringe all the way down, try to leave a 1/4 inch of solution in the syringe because this prevents creating an airlock, if an airlock exists this can create a problem leaving one end open where the blood could back into.
I asked her what were the benefits for a slow push of the antibiotic, she said because it is very irritating to the veins, so a slow dilution is much better.
In general the pic-line is easy to live with, if you have it for awhile the the skin can become a little irritated so ask the nurse when having the to dressing change to go slowly or it may tear the skin a little.
When taking a shower in general they say use plastic wrap and tape, (but this is time consuming and leaves lots of tiny areas for water to seep into) for some reason they don't promote pic-line covers much. But I have to say the cover has given me just a bit of freedom back and well worth looking into. You can find this on my links section.
The clamp was getting very uncomfortable so a few weeks ago so I asked the nurse if she could cut it off - no problem- the next nurse that did my dressing change made it very clear that it was not a good idea because if the cleave broke I could bleed to death (nice to know). It is extremely rare, I then said to her that I had the special line that has a valve on the internal end, she then told me that this kind of IV line has only been out for about 6 months and should work fine - but did I want experiment with it. No.
The other thing she said is after doing the saline push at the end of each treatment try not push the syringe all the way down, try to leave a 1/4 inch of solution in the syringe because this prevents creating an airlock, if an airlock exists this can create a problem leaving one end open where the blood could back into.
I asked her what were the benefits for a slow push of the antibiotic, she said because it is very irritating to the veins, so a slow dilution is much better.
In general the pic-line is easy to live with, if you have it for awhile the the skin can become a little irritated so ask the nurse when having the to dressing change to go slowly or it may tear the skin a little.
When taking a shower in general they say use plastic wrap and tape, (but this is time consuming and leaves lots of tiny areas for water to seep into) for some reason they don't promote pic-line covers much. But I have to say the cover has given me just a bit of freedom back and well worth looking into. You can find this on my links section.
Saturday, May 23, 2009
Never Give Up
In this is a battle you really can't turn your health over to the medical profession. You can not rely on normal or quick Lymes testing because over 40 % of the current testing will result in many False Negatives. If you rely solely these tests you will have a false sense of security when actually you may still have a raging case of Lymes or a Co infection.
Testing
You may have to battle your doctors to get the most accurate testing - I suggest IGENEX. Your doctor may say Lymes is not in your area and there is no need to worry about it - Don't believe it. The doctors or health clinics are not really aware of what may be happening in you area and during that time you are gradually getting sicker and sicker. The doctors may continue testing you for everything else under the sun and still not know what is wrong with you, while not even considering Lymes.
Antibiotics
You can not put all of your faith in your doctors, if they say a short 28 day coarse of antibiotics will take care of your Lymes problem - that is NOT true. If you have just been bit and they caught it within the first week or so that may be true (this scenario is very unlikely).
If you have tested positive and had symptoms for 1-2 months more than likely you will need to be on Doxy for up to 4 months 200-400mg 2-3 times a day. If you have had the spirakeet longer (mine was undiagnosed for at least 2 1/2 years, I had classic symptoms and they didn't catch it). If caught early you will need antibiotics for 4-8 months or longer and depending on the severity up to 1-6 years or longer. So the key is to catch it early. You may have to fight with your doctor for the treatment or find a Lymes literate doctor. One reason for the duration is the need to kill it during the many cycles it goes through, Lymes spirakeets will go into a cyst form to protect itself when it feels threatened or mutate, so you need to extend the treatment well beyond the time frame to make sure that you have gotten the bacteria.
If doctors tell you not to worry - it was not in long enough. Wrong - if it was not properly removed - you could have just squeezed the bacteria and parasites into you. (Never squeeze the body use a fine tweezers and remove it by the head).
Not all Doctors think the Same
Not all doctors think in the same way, you will need a doctor that uses integrative medicine (I wasn't interested, I just wanted them to napalm this thing but learned very quickly you really need both or you will be one very sick puppy). I would NOT suggest infectious disease doctors, you may be lucky and have one that really understands Lymes, but from what I have seen I am not impressed, most doctors are not educated in Lymes or only know basic information.
Most doctors will rely on the quick Lymes test which produces too many False Negative results. (I had 3 False Negative tests, my body was not making antibodies to fight this disease off).
When you get tested I would prefer to have a full panel Lymes test not all doctors know how to read them, so get a copy for yourself and look over the results and see if there is positive anywhere in the results. Some doctors will see that most of your results are negative and that is what they think. (Once I got the right testing done and got the results my doctor thought it was fine she didn't notice the 1 small positive result, I got a copy saw the small positive and called the director of the lab.) I showed my results to other doctors first, they were not interested, it was not their speciality and would not even look at it.
I thought I was Crazy
Most important follow you intuition, you MUST be your own advocate. - I hit every obstacle imaginable along the way, I was so wiped out but still tried to function, I thought I must be still recovering from the Bells Palsy or just lazy but actually the Lymes was systematically moving through my body, and it wasn't until one of my students pointed me in the right direction to the right lab where I started to get some answers. At this point I was feeling better and thought I must be crazy for pursuing more testing, but I also knew at some point another weird thing would attack me. I think of myself as a healthily person and all of this was just to strange so I knew there had to be an underlying problem. That is why I suggest the 6040 full panel Igenex test (and even then you may need more testing to find it) any other testing will lull you into a
false sense of security until it hits you again!
Get Accuarte Testing
The most common and cheapest tests are Enzyme-linked immunosorbent assay (ELISA), Indirect fluorescent antibody (IFA), and Western blot test. These are quick tests with results back in a few days these tests are used to look for the Lyme disease antibodies..... the problem is you may not be making anitibodies, meaning your body is NOT trying to fight this bacteria off. (I had no antibodies but still had a raging case of Lymes / Babesia.) The only chance you may have in finding the disease with these tests is if you are on a coarse of antibiotics which create a die off reaction that can then be detected. Insurance companies only pay for a very small portion if at all due to suggest CDC guidelines, these are hopefully in the process of being changed. This disease is very good at hiding and if you are on any antivirals or steroids or other meds or have any other variables you will have false negative results. Reasons for False Negatives more info on False Negatives
The Best and most accurate test -is much more in-depth and extensive it takes about 3 weeks for results, and if by chance that one comes back negative or the results are inconclusive you go to plan B. That means a very short coarse of antibiotics then the urine is tested. Please read How To Get Reliable Testing. For testing, IGeneX More information
Never Give Up you will have to fight for your answers.
Why insurance doesn't pay much if at all
Lyme diagnosis is not within standard of care There is not such thing as Lyme disease (in this area) Lyme testing used are not FDA approved or CDC approved i.e. Bowen, MDL, etc. There is no clinical evidence of Lyme disease with this patient (based on being ill informed and lack of understanding of the stages and symptoms of Lyme disease). Treatment with IV’s for Lyme disease is not within standard of care Length of treatment is not standard of care Antibiotic used is not standard of care Supplements are not within standard of care More information on this article
Also suggested is to watch the Under Our Skin trailer or visit their blog available on links
Testing
You may have to battle your doctors to get the most accurate testing - I suggest IGENEX. Your doctor may say Lymes is not in your area and there is no need to worry about it - Don't believe it. The doctors or health clinics are not really aware of what may be happening in you area and during that time you are gradually getting sicker and sicker. The doctors may continue testing you for everything else under the sun and still not know what is wrong with you, while not even considering Lymes.
Antibiotics
You can not put all of your faith in your doctors, if they say a short 28 day coarse of antibiotics will take care of your Lymes problem - that is NOT true. If you have just been bit and they caught it within the first week or so that may be true (this scenario is very unlikely).
If you have tested positive and had symptoms for 1-2 months more than likely you will need to be on Doxy for up to 4 months 200-400mg 2-3 times a day. If you have had the spirakeet longer (mine was undiagnosed for at least 2 1/2 years, I had classic symptoms and they didn't catch it). If caught early you will need antibiotics for 4-8 months or longer and depending on the severity up to 1-6 years or longer. So the key is to catch it early. You may have to fight with your doctor for the treatment or find a Lymes literate doctor. One reason for the duration is the need to kill it during the many cycles it goes through, Lymes spirakeets will go into a cyst form to protect itself when it feels threatened or mutate, so you need to extend the treatment well beyond the time frame to make sure that you have gotten the bacteria.
If doctors tell you not to worry - it was not in long enough. Wrong - if it was not properly removed - you could have just squeezed the bacteria and parasites into you. (Never squeeze the body use a fine tweezers and remove it by the head).
Not all Doctors think the Same
Not all doctors think in the same way, you will need a doctor that uses integrative medicine (I wasn't interested, I just wanted them to napalm this thing but learned very quickly you really need both or you will be one very sick puppy). I would NOT suggest infectious disease doctors, you may be lucky and have one that really understands Lymes, but from what I have seen I am not impressed, most doctors are not educated in Lymes or only know basic information.
Most doctors will rely on the quick Lymes test which produces too many False Negative results. (I had 3 False Negative tests, my body was not making antibodies to fight this disease off).
When you get tested I would prefer to have a full panel Lymes test not all doctors know how to read them, so get a copy for yourself and look over the results and see if there is positive anywhere in the results. Some doctors will see that most of your results are negative and that is what they think. (Once I got the right testing done and got the results my doctor thought it was fine she didn't notice the 1 small positive result, I got a copy saw the small positive and called the director of the lab.) I showed my results to other doctors first, they were not interested, it was not their speciality and would not even look at it.
I thought I was Crazy
Most important follow you intuition, you MUST be your own advocate. - I hit every obstacle imaginable along the way, I was so wiped out but still tried to function, I thought I must be still recovering from the Bells Palsy or just lazy but actually the Lymes was systematically moving through my body, and it wasn't until one of my students pointed me in the right direction to the right lab where I started to get some answers. At this point I was feeling better and thought I must be crazy for pursuing more testing, but I also knew at some point another weird thing would attack me. I think of myself as a healthily person and all of this was just to strange so I knew there had to be an underlying problem. That is why I suggest the 6040 full panel Igenex test (and even then you may need more testing to find it) any other testing will lull you into a
false sense of security until it hits you again!
Get Accuarte Testing
The most common and cheapest tests are Enzyme-linked immunosorbent assay (ELISA), Indirect fluorescent antibody (IFA), and Western blot test. These are quick tests with results back in a few days these tests are used to look for the Lyme disease antibodies..... the problem is you may not be making anitibodies, meaning your body is NOT trying to fight this bacteria off. (I had no antibodies but still had a raging case of Lymes / Babesia.) The only chance you may have in finding the disease with these tests is if you are on a coarse of antibiotics which create a die off reaction that can then be detected. Insurance companies only pay for a very small portion if at all due to suggest CDC guidelines, these are hopefully in the process of being changed. This disease is very good at hiding and if you are on any antivirals or steroids or other meds or have any other variables you will have false negative results. Reasons for False Negatives more info on False Negatives
The Best and most accurate test -is much more in-depth and extensive it takes about 3 weeks for results, and if by chance that one comes back negative or the results are inconclusive you go to plan B. That means a very short coarse of antibiotics then the urine is tested. Please read How To Get Reliable Testing. For testing, IGeneX More information
Never Give Up you will have to fight for your answers.
Why insurance doesn't pay much if at all
First is: Diagnosis is not within standard guidelines.
Second is: Treatment is not medically necessary because of one of the two following reasons: 1) Not adequate data supporting diagnosis and/or 2) the treatment is not within the standard of care for Lyme disease
Also suggested is to watch the Under Our Skin trailer or visit their blog available on links
Growing wings
May 23 10:30 pm
I can hardly stand it, I feel as if my back is going to rip apart on the flanks and grow wings - at least that is what it feels like. I know this is part of the Herx reaction so it is all good - but ....whew ...this can be tough.
May 24 12:57 pm
Wow ... I am not horizontal in bed or on the couch for the moment and I might even try to do a tiny bit of painting. Right now my back is alright so maybe I have popped my wings, I have just a bit more than minimal energy. This is a big improvement!
I can hardly stand it, I feel as if my back is going to rip apart on the flanks and grow wings - at least that is what it feels like. I know this is part of the Herx reaction so it is all good - but ....whew ...this can be tough.
May 24 12:57 pm
Wow ... I am not horizontal in bed or on the couch for the moment and I might even try to do a tiny bit of painting. Right now my back is alright so maybe I have popped my wings, I have just a bit more than minimal energy. This is a big improvement!
Thursday, May 7, 2009
Starting to Herx
I got my picc-line last week and am starting to get use to giving myself the infusions and see what my limitations are. I am giving myself a little down time for the moment so I can try to heal.
I have been having the Herx reaction (which is what I expected). I have energy from about 7-11am - then I am down for the count. This totally sucks, I have plans of what I am going to do for the day, thinking that I am going into the studio ....but I never seem to make it....I am lucky if I can take my meds, take a shower without getting the bandages wet, wash the dishes, light house keeping, then I am down for the count again.
I figured this was going to happen and that was why I wanted give myself a couple of weeks, and see how the die-off goes before I made new commitments. One minute I am fine, usually from 7-11am I am thinking no big deal - I can take on the world, but at 11:30 everything changes, meaning headaches, large muscle and joint pain, fatigue etc - this is all a good sign, the IV meds are doing their job. The problem with the Herx, is that it goes in cycles every 3-4 weeks and the reaction can last 1-3 weeks itself, when I was really bad in Nov / Dec I had more bad days than good.
Many people once the start reciveing treatment for Lymes (oral or IV) want to stop the treatment due to the fact that the healing process is so tough the herx reaction brings back many of the original symptoms, is also called the Healing Crisis and the trick is not to give up. " Herxing" events have even been likened to an "exorcism" that is "a necessary evil to be endured."
-------
Wow - it has been 3 1/2 weeks since I have started the IV therapy ..and I really feel horrible . I thought this Herx reaction would be only for a couple of days but from my last ones knew this could happen.
I go between wondering if I am just lazy or really not feeling well, I can't make it off the couch and am sleeping alot again. Mom just called and was complaining about the 90 degree heat, I told her I am wearing a down vest and am using a down blanket....well I guess that answers my question.
May 19 - today is a good day, I actually did a little painting - I am trying to find me again.
The Herx reaction
Herxing
I have been having the Herx reaction (which is what I expected). I have energy from about 7-11am - then I am down for the count. This totally sucks, I have plans of what I am going to do for the day, thinking that I am going into the studio ....but I never seem to make it....I am lucky if I can take my meds, take a shower without getting the bandages wet, wash the dishes, light house keeping, then I am down for the count again.
I figured this was going to happen and that was why I wanted give myself a couple of weeks, and see how the die-off goes before I made new commitments. One minute I am fine, usually from 7-11am I am thinking no big deal - I can take on the world, but at 11:30 everything changes, meaning headaches, large muscle and joint pain, fatigue etc - this is all a good sign, the IV meds are doing their job. The problem with the Herx, is that it goes in cycles every 3-4 weeks and the reaction can last 1-3 weeks itself, when I was really bad in Nov / Dec I had more bad days than good.
Many people once the start reciveing treatment for Lymes (oral or IV) want to stop the treatment due to the fact that the healing process is so tough the herx reaction brings back many of the original symptoms, is also called the Healing Crisis and the trick is not to give up. " Herxing" events have even been likened to an "exorcism" that is "a necessary evil to be endured."
-------
Wow - it has been 3 1/2 weeks since I have started the IV therapy ..and I really feel horrible . I thought this Herx reaction would be only for a couple of days but from my last ones knew this could happen.
I go between wondering if I am just lazy or really not feeling well, I can't make it off the couch and am sleeping alot again. Mom just called and was complaining about the 90 degree heat, I told her I am wearing a down vest and am using a down blanket....well I guess that answers my question.
May 19 - today is a good day, I actually did a little painting - I am trying to find me again.
The Herx reaction
Herxing
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