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A thread to discuss lyme disease*  This thread currently has 155,785 views. Print Print Thread
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Kim
Saturday, November 19, 2011, 2:51pm Report to Moderator Report to Moderator

SWAMI GT3 Teacher, Slight Taster
Ee Dan
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There are lyme organizations that have forums like this one where those affected by Lyme disease and coinfections can help each other out.  The book will mention a few of them.

Turn the Corner Foundation.com
Lymenet.org
lymefriends.org
http://www.mdjunction.com/forums/lyme-disease-support-forums/

I spend most of my time on Lymenet.org.  I also one of the people who give out names of LLMD's to people in VA,MD and DC.
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nowishow
Saturday, November 19, 2011, 4:55pm Report to Moderator Report to Moderator

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Quoted from ruthiegirl


I'm not noticing any pain in the liver or spleen area; when I get fibro-flares, I tend to get the most pain in the neck and shoulders, along with headaches and all-over muscle aches.



You might try high doses of vitamin D, like 5,000 to 10,000 units a day. It really helps with my muscle aches. It would be better if you could get a test first to see if you are low, but most of us are extremely low. As a group we tend to need much higher doses of supplements then the general public.


"Anxiety is the gap between now and then"

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nowishow
Saturday, November 19, 2011, 5:03pm Report to Moderator Report to Moderator

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Quoted from TJ
What do you do if you don't have money to spare?  That is my catch 22.  I don't have the money, I can't get it unless I work, I don't know how long I can work, and right now I'm out of work.  I'd been managing up until I got laid off, but could I have kept it up indefinitely?  I don't know.  I'd like to think I could have, but then I wonder how the treatment would affect me, plus I wasn't earning enough to pay for specialists and IV antibiotics out of pocket.  I could afford my regular general practitioner, and I could afford orals (generics at least), but if that wasn't effective enough, what then?


I don't know of a good answer to this question. It might be a good idea for you to ask this question on one of the Lyme boards that Kim has mentioned and see if someone has some good ideas. I'm taking an herbal approach to healing and still it is very expensive. I wish you the best of luck and help.


"Anxiety is the gap between now and then"

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nowishow
Saturday, November 19, 2011, 5:12pm Report to Moderator Report to Moderator

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Quoted from TJ

Lyme patients aren't quite in such immediate peril as cancer patients, are they?


Actually some of us are. This disease affects our organs and it is believed many people die from Lyme disease (and co-infections) that were never diagnosed. I have lots of heart symptoms caused from this and if I hadn't been taking such good care of my body when I got infected I probably would have had a heart attack and died two years ago.


"Anxiety is the gap between now and then"

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JJR
Saturday, November 19, 2011, 5:27pm Report to Moderator Report to Moderator

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Kyosha Nim
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Yeah, it's affected my heart too.  And my Mom's Pastor has it and he's had heart complication from it too.  It can really mess with you.  In fact, it seems like it might be an underlying, undiagnosed cause to a lot of serious illnesses.  

A church member I know is diagnosed with Parkinson's and I wonder if it's really not lyme related.  Regardless of if it is or not, his life is very limited also.  He has to take a ton of meds to overcome his symptoms for brief periods in the day.  Then after they wear off, his hands start cramping and his face starts drooping and he just has to sit and is not able to do much.  It's no way to live and  it's not any worse or better than some people with canccer.  Now, I have no clue if it's caused by lymes or not, but the point is, cancer is not the only devastating situation to be in.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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TJ
Saturday, November 19, 2011, 6:13pm Report to Moderator Report to Moderator

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Quoted from nowishow
I'm taking an herbal approach to healing and still it is very expensive. I wish you the best of luck and help.
That's what I've decided to do at this point: use herbs and other supplements to boost my immune system, and keep on with the Genoma Security so my immune system can get at the little buggers.

I didn't realize how acute the Lyme dangers could be, yikes!  I am grateful that I haven't had heart problems on top of everything else.
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nowishow
Saturday, November 19, 2011, 6:28pm Report to Moderator Report to Moderator

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Goldie -

I've been bit numerous times by ticks over the last 18 years. Looking back I probably started showing symptoms about 15 years ago (axiety, fatigue). But it was the two ticks about 8-9 years ago that really made me very sick. I was driving home from photographing on the coast and felt a deep pain in my chest, since it was on the right side I wasn't worried that it was a heart attack and waited until I got home to investigate. I found 2 ticks under my bra on the right side. I removed them without any trouble. But had that deep chest pain for weeks. No rash, no flu symptoms, no fever. So I never went to the doctor.

I very slowly got sicker and sicker. At the time I was working two jobs and had very little money so I wasn't eating as well as I do now (and no supplements). I also didn't know that I was a non-secretor so I was still eating wheat, as that was ok for a B. I started having very intense night sweats/chills (had them during the day as well) my fatigue increased every year. My depression and anxiety increased. I thought I was just menopausal and when you get sick that slowly at this age you might think you were "just getting old" as I did. I started having roving joint problems. I suddenly gained 20 lbs. almost overnight. My hair, nails, and skin started looking very unheathly and I was getting increasingly more constipated. I was drinking more and more tea to stay awake at work and finding it almost impossible to function in my life but I kept trying.

I finally found this website. I'd been on the BTD since 1999 I think, but I never looked at the website. Well I found out about the GTD and decided to give it a try. I also decided to get a test to find out my secretor statis. BIG CHANGE! Within three months of the diet I was getting better and worse at the same time. My nails, hair, skin, and eyes looked so much better but my fatigue, constipation, and pain were increasing. In fact I started having trouble with my heart. I now know that my immune system was starting to kick in and trying to take care of the infection.

I ended up in the hospital with heart attack symptoms in March 2010. I was so sick I couldn't sit up for more than 10-15 minutes without my heart pounding out of my chest and my blood pressure dropping. The hospital sent me home saying nothing was wrong with me. This happened a few times. After about six weeks (I was on disability, not working) I decided to spend money to see a doctor outside my insurance. I spent about $4,000 on tests alone because the doctor didn't test for Lyme right off the bat. But I did end up with positive Lyme and Erlichia tests as well as many other viruses.

I did one month of doxy but decided to go the herbal route instead of anti-biotics because I do so poorly on any Rx drugs. I'm extremely chemical sensitive and that includes perscription drugs. I was only off work for 3 1/2 months. But, I went back sooner than I should have as I was out of benifits and money. I'm with a different doctor now who's closer to home and is actually a Lyme specialist and I'm taking the Bryon White formulas (A-Bab, A-Bart, A-L). This doctor says my biggest infection is Babesia even though I didn't test positive for it. My second is Bartonella and Lyme is the least of my infections. The thinking is if you don't take care of the co-infections you'll never get rid of the Lyme infection. So we concentrate on taking care of the Babesia mostly.

I've been improving although I had a huge relapse last July (a return of heart symptoms). My doctor says I have at least another year to go.  And to answer one of your other questions, yes attention is paid to my bowels. I do bowel cleansing and all kinds of detoxing. Most of what I do is to support the body in detoxing and improving the immune system.

I hope this helps.  


"Anxiety is the gap between now and then"

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Kim
Saturday, November 19, 2011, 8:53pm Report to Moderator Report to Moderator

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Ee Dan
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Lyme disease shuts off the immune system. Think about all the infections and viruses that go through our bodies that our immune system takes care of.  Once the immune system gets confused, the good guys don't go after and kill the bad guys.  Cancer is one big thing to worry about.  

No matter what, no lyme doctor will talk me out of staying on my swami.  I am not going to change my diet unless swami tells me to.

Nowishow/TJ-  Turn the Corner Foundation and National Capital Lyme have organizations that can help with paying for medications for treatment.  They can also help if you need an Igenex test.  Go through the website for the link for help. If you qualify, it could be a huge relief for you.

By the way, even if you do just oral antibiotics, many people can get better with them (spend less money) and add herbals at the end to clean up things.  I am considering getting a rife machine at the end of all the antibiotics.  There are always other options to help treat and beef up the immune system.  Swami is number one!!!
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JJR
Saturday, November 19, 2011, 10:42pm Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from nowishow
Goldie -

I've been bit numerous times by ticks over the last 18 years. Looking back I probably started showing symptoms about 15 years ago (axiety, fatigue). But it was the two ticks about 8-9 years ago that really made me very sick. I was driving home from photographing on the coast and felt a deep pain in my chest, since it was on the right side I wasn't worried that it was a heart attack and waited until I got home to investigate. I found 2 ticks under my bra on the right side. I removed them without any trouble. But had that deep chest pain for weeks. No rash, no flu symptoms, no fever. So I never went to the doctor.

I very slowly got sicker and sicker. At the time I was working two jobs and had very little money so I wasn't eating as well as I do now (and no supplements). I also didn't know that I was a non-secretor so I was still eating wheat, as that was ok for a B. I started having very intense night sweats/chills (had them during the day as well) my fatigue increased every year. My depression and anxiety increased. I thought I was just menopausal and when you get sick that slowly at this age you might think you were "just getting old" as I did. I started having roving joint problems. I suddenly gained 20 lbs. almost overnight. My hair, nails, and skin started looking very unheathly and I was getting increasingly more constipated. I was drinking more and more tea to stay awake at work and finding it almost impossible to function in my life but I kept trying.

I finally found this website. I'd been on the BTD since 1999 I think, but I never looked at the website. Well I found out about the GTD and decided to give it a try. I also decided to get a test to find out my secretor statis. BIG CHANGE! Within three months of the diet I was getting better and worse at the same time. My nails, hair, skin, and eyes looked so much better but my fatigue, constipation, and pain were increasing. In fact I started having trouble with my heart. I now know that my immune system was starting to kick in and trying to take care of the infection.

I ended up in the hospital with heart attack symptoms in March 2010. I was so sick I couldn't sit up for more than 10-15 minutes without my heart pounding out of my chest and my blood pressure dropping. The hospital sent me home saying nothing was wrong with me. This happened a few times. After about six weeks (I was on disability, not working) I decided to spend money to see a doctor outside my insurance. I spent about $4,000 on tests alone because the doctor didn't test for Lyme right off the bat. But I did end up with positive Lyme and Erlichia tests as well as many other viruses.

I did one month of doxy but decided to go the herbal route instead of anti-biotics because I do so poorly on any Rx drugs. I'm extremely chemical sensitive and that includes perscription drugs. I was only off work for 3 1/2 months. But, I went back sooner than I should have as I was out of benifits and money. I'm with a different doctor now who's closer to home and is actually a Lyme specialist and I'm taking the Bryon White formulas (A-Bab, A-Bart, A-L). This doctor says my biggest infection is Babesia even though I didn't test positive for it. My second is Bartonella and Lyme is the least of my infections. The thinking is if you don't take care of the co-infections you'll never get rid of the Lyme infection. So we concentrate on taking care of the Babesia mostly.

I've been improving although I had a huge relapse last July (a return of heart symptoms). My doctor says I have at least another year to go.  And to answer one of your other questions, yes attention is paid to my bowels. I do bowel cleansing and all kinds of detoxing. Most of what I do is to support the body in detoxing and improving the immune system.

I hope this helps.  



My story is very similar to yours.  Different, but very very similar.  And by the way, the heart situation your having sounds like what I found out at Mayo last year when they did a tip table test.  My BP would fall gradually.  My cardiologist called it POTS.  It's where the messages aren't being sent properly to the vessels around your heart to constrict at the right times.  I guess some people will get up quick and faint.  I've had times when I would get up and get dizzy.  I don't get it as much now that I'm drinking 1700000000 gallons of water a day to keep blood volume up.  But whatever.  I'm not sure if that's what you have, but that's what it sounds like.  When the BP drops, the rate will go up and try and make up for it.  I also get an arrhythmia.  That was the first symptom I got after I believe I was bit in about 99.  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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nowishow
Sunday, November 20, 2011, 3:53pm Report to Moderator Report to Moderator

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Quoted from Kim

Nowishow/TJ-  Turn the Corner Foundation and National Capital Lyme have organizations that can help with paying for medications for treatment.  They can also help if you need an Igenex test.  Go through the website for the link for help. If you qualify, it could be a huge relief for you.


I think you meant to address this to Ruthiegirl as I already had an Igenex test. I think this is a great idea if anyone wants to take advantage of it as that test is very expensive.  


"Anxiety is the gap between now and then"

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JJR
Sunday, November 20, 2011, 4:45pm Report to Moderator Report to Moderator

33% Nomad, calories calories!!!!!!
Kyosha Nim
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Reeeeeeaaaally.  That is nice!


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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ruthiegirl
Monday, November 21, 2011, 1:56am Report to Moderator Report to Moderator

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Quoted from nowishow


Ruthiegirl - I agree with this. This product really helps me.
http://www.pharmacyspecialties.com/site/679199/product/BR136

I apply it on any areas of my neck, upper back, or upper chest that feel knotted up and it seems to get the lymph system draining in that area. I've been using it for at least a month and it has continued to help me. It might be worth a try.  
That's a lot of money for a supplement that may or may not help me. I understand enough about homeopathy to be wary of ready-made combination remedies for specific medical issues; I'd rather research individual remedies and take JUST what my individual body needs.

Quoted from nowishow


You might try high doses of vitamin D, like 5,000 to 10,000 units a day. It really helps with my muscle aches. It would be better if you could get a test first to see if you are low, but most of us are extremely low. As a group we tend to need much higher doses of supplements then the general public.
I'm taking 10,000 iu of Vitamin D per day already. I had my levels checked for the first time last year, and they were down to 33. 15,000 iu a day (when the dr only told me to take 10,000 and to get tested again every 3 months) got my levels up to 83, then I lowered my dose for a while, felt sicker, starting taking 10,000 iu per day again, and then when I got tested again (about a month later) I was at about 63.

I finally got the book Earthing out of the library and I've been reading it. For the past 2 days, I've made sure to get about an hour of "outside time" touching the earth, and I do seem to have a little less pain already.


Ruth, Single Mother to 19yo   O- Leah , 18yo O- Hannah, and  12yo B+ Jack


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Chloe
Monday, November 21, 2011, 2:47am Report to Moderator Report to Moderator

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Kyosha Nim
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Ruthie....this is interesting.

http://www.youtube.com/watch?v=te4WPdIsBtQ

Part 2

http://www.youtube.com/watch?v=nFcGXedC2zw&feature=related

continuation parts can be found as well


"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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spinnakertech
Monday, November 21, 2011, 5:52pm Report to Moderator Report to Moderator
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Quoted from Kim


Spinnertech, you are mistaken.

I am on antibiotics and supposed to see Jemsek by the first week of January after my third cycle.  You are getting better treatment because you are giving that practice that huge IV monitoring fee each month.  So if you do orals, you are at the bottom of the list.   They are overbooking new appts and follow up appts with Jemsek and he only puts his calendar out 3 months at a time.  So I couldn't even make a couple of appts ahead of time.

The cancellation list hasn't worked for anyone I know.  I don't drive and need a days notice to get into DC.  

Not everyone is enamored with this doctor.  Their PA's aren't consistent either.  

I already sent in a deposit and paperwork to see another doctor who does have time for me to see them.  This one won't charge me $2K  a month to be on IV antibiotics.  

Goldie-read the book "Cure Unknown" by Pamela Weintraub.  Excellent book that explains the whole political and medical views of Lyme.


Kim,

I certainly did not mean to mis-characterize where you are in your treatment.  I just recall that back on October 27th, just three weeks ago, you said that you had not started your antibiotic therapy with Dr. Jemsek and that you would start around November 7th.  Then you had your gallbladder surgery so I didn't think you had even started.  My mistake.

But apparently you have gotten the appointments you needed with Dr. Jemsek when you needed them.  And your next appointment is in January, which I assume is already scheduled.  When you go for follow-up appointments, they make the next appointment with you before you leave the office, which is what they did during your November appointment, correct?  They don't let ANYONE make appointments beyond the next one, not even IV patients.  This is because they don't know how your protocol might change until they see how you react to the current protocol.  You might be on a four week protocol in the future or an eight or twelve week protocol in the future.  How can they schedule appointments into the future without knowing when to schedule them?

Please don't think that because you are an oral patient instead of an IV patient that you are not getting the same amount of attention.  I know many people who are oral patients with Dr. Jemsek and they get the same high quality of care and attention that I get.  They are all very happy that they are getting better under such high quality care.

By the way, I've clarified before that IV patients DON'T HAVE TO pay the $2,000 per month fee.  IT IS OPTIONAL.  You keep mischaracterizing that as the only option.  IV patients also have the option to pay as they go, paying separately for every dose of drugs, all supplies, every phone call, and every office visit.  It ended up being more predictable for me to pay the flat fee instead, which includes all of the office visits, phone calls, etc.

Finally, have you even tried getting on the wait list?  It is NOT TRUE that it doesn't work.  It worked for me and others on this message board have said it worked for them.  And you must be ignoring the fact that I said that they usually give you several days' notice, if not a whole week.  So it's no problem that you need a day's notice--they usually give you much more than that.

But if you want to go to another doctor for treatments, of course it is your option.  I've already told you about a doctor in Germantown, Maryland, who takes health insurance.  The problem is that I know someone who is seeing him and he only prescribes IV Rocephen, which is a very old treatment for Lyme Disease and it doesn't help with the co-infections.

Please keep in mind that Dr. Jemsek did not give any of us Lyme Disease.  He is one of the few who is brave enough to keep trying to help us even with state medical boards breathing down his neck and revoking his license.  Also, his wife was diagnosed with cancer and two weeks later his young daughter was diagnosed with Leukemia.  Any other doctor might have closed down his practice to be with his family.  But not Dr. Jemsek.  He truly cares about our well-being and about continuing his research into the latest treatments.

Best of luck with your treatment and with your husband's treatment.  No one should have to suffer with this disease longer than they should merely because they end up with the wrong doctor.
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Lola
Monday, November 21, 2011, 7:12pm Report to Moderator Report to Moderator

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As a reminder, all the guidelines of respect and courtesy regarding others and their opinions always apply.

We cannot monitor every post of every thread. When something gets by us, we rely on other members to call our attention to it. If there is something that needs to be called to our attention, please do so. It is part of being in the community and helping all.

Do not make us have to lock this thread.


''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
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The harder you are on yourself, the easier life will be on you!
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nowishow
Monday, November 21, 2011, 7:58pm Report to Moderator Report to Moderator

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Quoted from ruthiegirl
That's a lot of money for a supplement that may or may not help me. I understand enough about homeopathy to be wary of ready-made combination remedies for specific medical issues; I'd rather research individual remedies and take JUST what my individual body needs.

I'm taking 10,000 iu of Vitamin D per day already. I had my levels checked for the first time last year, and they were down to 33. 15,000 iu a day (when the dr only told me to take 10,000 and to get tested again every 3 months) got my levels up to 83, then I lowered my dose for a while, felt sicker, starting taking 10,000 iu per day again, and then when I got tested again (about a month later) I was at about 63.

I finally got the book Earthing out of the library and I've been reading it. For the past 2 days, I've made sure to get about an hour of "outside time" touching the earth, and I do seem to have a little less pain already.


Sounds like your Vitamin D levels are good. And I know what you mean by not wanting to try something that is too expensive and you don't feel right about it. I say the very same thing to my doctor all the time.

I've been trying to sit on the ground as often as possible lately too. It seems like a really good idea and it just feels good to be outside, even when it's cold.


"Anxiety is the gap between now and then"

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spinnakertech
Monday, November 21, 2011, 8:32pm Report to Moderator Report to Moderator
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Quoted from Lola
As a reminder, all the guidelines of respect and courtesy regarding others and their opinions always apply.

We cannot monitor every post of every thread. When something gets by us, we rely on other members to call our attention to it. If there is something that needs to be called to our attention, please do so. It is part of being in the community and helping all.

Do not make us have to lock this thread.


Thank you for the reminder, Lola.  I have removed the objectionable portion of my post that was critical of the other member.
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Goldie
Monday, November 21, 2011, 8:49pm Report to Moderator Report to Moderator

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Sam Dan
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Quoted Text
Do not make us have to lock this thread.


Why??? Is expressing frustration such on issue for monitors?  I mean even if someone is upset, as fellow friends and sick people,  cant we not just take the good stuff and leave the rest..  
try taking the high road..

I just today learned from another 'frustration' post that asking:  "WHAT is really making me upset?", may give me the answer quicker then from avoid food or any other remedy.. I am grateful for that message..

Even my responding in this post - I need to ask that question now.. I guess its because I don't 'get' the 'upsetting post????'    

I have learned much about LYME from this thread.. and hope that even though it is a long thread, it will be allowed continuation .. surely getting individual help is more important then what might affect this or that one on any bad day/moment he or she may have?    

'Sensitivity' is a personal thing.. and often expressed by those who are sick and need time to heal from the inside out, from the head on down.  

I can not imagine any complaints about what was posted here or elsewhere.. .. (If I am really wrong then I guess you are monitoring well enough for me to never see those post complaints..)
  
IN the interim.. THANKS for all threads.


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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JJR
Monday, November 21, 2011, 9:53pm Report to Moderator Report to Moderator

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Kyosha Nim
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Yeah, this thread has been really nice.  Hopefully it doesn't get locked.  Plus there are some resources in here that are great.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Kim
Tuesday, November 22, 2011, 11:58pm Report to Moderator Report to Moderator

SWAMI GT3 Teacher, Slight Taster
Ee Dan
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Age: 60
Quoted from 11080




Best of luck with your treatment and with your husband's treatment.  No one should have to suffer with this disease longer than they should merely because they end up with the wrong doctor.


I know that Jemsek cares.  But if you don't manage how many new people you take into the practice and manage your apptointent schedule, people can't follow up when they need to.  At the end of each appt. we are going way, way past the time we are supposed to return because no one, not even PA's have open slots.  As sick as we are, we can't be seen only 3 times a year and that is what is happening with scheduling.

We have had issues with calls not being returned from every dept in the building.  Triage should call back with 48 hours.  They don't.  There are times  that not one of the extensions even goes to voice mail. When that happens, I can't even leave anyone a message.  One of the PA's was very upset that we couldn't get in to way past our time.  

I connected with many who are also disgusted with the scheduling.  Jemsek does not account for the load of people he takes in every month in regard to follow up.  I can't get in to see him.  Even getting into a PA for my husband was pushing his appt out from two months to almost 4 months.  

I was thrilled to be there in the beginning, but I need a doctor who is accessible for questions and can give me a follow up appt. when I am supposed to be seen.  I was assured before my first visit I would not have any problems following up with seeing the doctor, but that has not proven to be true at all.

I am glad you are happy.  Wish I knew all this before we paid the big fees up front for two people getting appts.  We are already set up with a new doctor, not the one that you suggested that takes insurance.  

I hope you continue to do well.
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nowishow
Wednesday, November 23, 2011, 6:00pm Report to Moderator Report to Moderator

B+ 51% Swami Explorer - D'Adamo diet since 1999
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Good luck Kim - You have to do what you feel is best

Ruthiegirl - Are you taking any Zinc? If not, you might try Zinc Picolinate. How about magnesium? Magnesium glycinate is the one most recommended by Lyme doctors, I believe.


"Anxiety is the gap between now and then"

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ruthiegirl
Wednesday, November 23, 2011, 6:10pm Report to Moderator Report to Moderator

SWAMI O+ Gatherer, Healing from Fibromyalgia
Kyosha Nim
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I've been using topical magnesium oil. I'm not taking any zinc supplements, but I think I get plenty in my diet. I eat a lot of red meat, greens, and bone broths.


Ruth, Single Mother to 19yo   O- Leah , 18yo O- Hannah, and  12yo B+ Jack


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nowishow
Wednesday, November 23, 2011, 7:01pm Report to Moderator Report to Moderator

B+ 51% Swami Explorer - D'Adamo diet since 1999
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Quoted from ruthiegirl
I've been using topical magnesium oil. I'm not taking any zinc supplements, but I think I get plenty in my diet. I eat a lot of red meat, greens, and bone broths.


Many of us respond to exta zinc. You might want to give it a try and see what happens. It actually gave me a herx response when I added zinc to my protocol. I'm planning on doing some hair analysis soon and see what that shows.


"Anxiety is the gap between now and then"

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Ribbit
Saturday, November 26, 2011, 8:20pm Report to Moderator Report to Moderator

~W~A~R~R~I~O~R~ Defender, Survivor
Kyosha Nim
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I wasn't able to read the two pages of posts since my last one.  I've got a headache and I can't focus.

My appointment with Dr. Kalb was frustrating.  They took 12 vials of blood and I fully expect everything to be negative.  The "bands" aren't going to be there 25 years after the bite.  He did say, however, based on my symptoms, "It's not a matter of *if* you have Lyme, but *which* co-infections you have."  He gave me a prescription for two different antibiotics and an anti-fungal something-or-other.  When I find the papers, I'll post the names of the recommended drugs.  I also did a stool test for parasites.

When I asked if there was paperwork for him to sign for me to get help with getting on disability, his whole demeanor changed and he had nothing else to say to me.  I was really annoyed by that.  Afterword I wondered if he thought I was making it all up just so I could have him say I was too sick to work.  Maybe that's just me being paranoid.

Ruth, if you could get disability payments "just" for fibromyalgia, surely I can too, with all the junk I've got going on.  But when I talked with the Lyme advocate, she said I haven't worked enough years to draw social security.  I only worked maybe 5 years, and only part-time, before we were married, and I've done very little since then.  I've never been able to work full-time because of my pain and lack of energy.  Dr. K wanted to know if an MD had diagnosed me with fibromyalgia, and that was annoying too.  As if I had to have somebody official tell me I had it! Grrr.  I feel like I wasted a whole bunch of time and money going to see him.  I won't have results for another 6 weeks.  I have no idea how much it's going to cost.  I can't even begin to guess how many tens of thousands of dollars I've spent over the last 15 years.  I currently spend about 500 bucks each time I see my ND, and that's just supplements to keep my body going.  She doesn't charge all that much per visit just to see her.  I should see her about twice as often as I'm going, but we don't have the money, and DH says we can't keep it up as it is.  The children likely have Lyme as well (Dr. K agreed with that), but we can't afford to test or treat, so they stay as they are until I'm better enough to slack off on my supps.  So I may have to do the antibiotic route just so we can have financial help.  Even if it destroys my gut flora and even if it makes me sick.  Either that or we lose the house and go live in a trailer park where I can get sick from mold and feel unsafe with druggie neighbors.

Someone told me you can draw on your spouse's social security without them being "penalized" and losing benefits themselves if they ever need it.  This is something we will look in to.


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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JJR
Sunday, November 27, 2011, 12:28am Report to Moderator Report to Moderator

33% Nomad, calories calories!!!!!!
Kyosha Nim
Posts: 4,960
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Man.  Our world is turning too because of money.  We're going to sell our house and move back into my Mom's duplex.  It'll be cheaper.  We can share internet with them.  We'll probably go down to one car.  Etc etc.  Of course I've never really cared about keeping up with the Joneses.  At least we're fed.  God has blessed us that way.  But we're running out of money to fight this whole thing.  It is frustrating.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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