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A thread to discuss lyme disease*  This thread currently has 175,925 views. Print Print Thread
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Ribbit
Tuesday, November 15, 2011, 6:34pm Report to Moderator Report to Moderator

~W~A~R~R~I~O~R~ Defender, Survivor
Kyosha Nim
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Quoted from nowishow


I thought "air hunger" was when you couldn't get enough air, kind of like shortness of breath (which I also have) not this suddenly noticing that you haven't been breathing. I've never heard it described like that. I'm glad to hear that is what it is.


Maybe I'm wrong.  


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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TJ
Tuesday, November 15, 2011, 8:25pm Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from TJ
On (what I believe to be) a related note, I noticed today that my Sunday dose of antibiotics was still in my pill box, meaning I forgot to take them yesterday.  Yep, there's definitely something going on.
Blegh, back in the toilet again today, and it's not just the nasty weather.
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Ribbit
Wednesday, November 16, 2011, 2:16am Report to Moderator Report to Moderator

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Kyosha Nim
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I feel like I'm dying and I feel like nobody cares.  How's that for a cheery greeting.  I know it'll get better once I'm back on my supplements.  But boy, TJ, I know why you take antidepressants.


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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ABJoe
Wednesday, November 16, 2011, 3:47am Report to Moderator Report to Moderator

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Quoted from Ribbit
I feel like I'm dying and I feel like nobody cares.  How's that for a cheery greeting.  I know it'll get better once I'm back on my supplements.

Going back to your previous post, I'm sorry that you have to prove to an MD that you have the symptoms.  Hopefully, it will be worth it once you get past the appt.  


RH-, ISTJ
Wonderful Wife = A+ Teacher; Darling Daughter = A- SWAMI Explorer
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TJ
Wednesday, November 16, 2011, 4:10am Report to Moderator Report to Moderator

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Kyosha Nim
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My appointment is tomorrow.  I'm excited and nervous.  I hope he sees reason and has done his homework!

Also, I just placed more supplement orders, just to rev up my immune system:
  • From NAP: Genoma Security (x2), Deflect B, and ARA Plus.
  • From iHerb.com: Nature's Answer Astragalus Root, Mushroom Science Coriolus PSP, Source Naturals L-Arginine L-Citrulline Complex, Natrol Zinc, and Nature's Way Cordyceps (Standardized).
That should last me a couple of months and get me geared up to kick Lyme's butt.
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Chloe
Wednesday, November 16, 2011, 2:35pm Report to Moderator Report to Moderator

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Kyosha Nim
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Sending you all prayers, healing wishes and my loving support..

Ribbit, extra special {{{{{hugs}}}}} to you... I just wanted you to know how much I really DO care.




"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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Goldie
Wednesday, November 16, 2011, 3:33pm Report to Moderator Report to Moderator

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Sam Dan
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spinnakertech

I am pleased for you to see improvements.  I was getting to the point where I thought there is little hope, but reading your post has made me believe again: Trying everything, Never giving up trying new things -  is the way to live...and going to a good doctor is important..

... it was how I got better (not Lyme but 63 years of pain). Had I stopped I would have died miserable.  Keep up your good effort.

My mantra for any doctor.. if he or she does not fix something within 3 treatment opportunities then it's time to move on... The least they should do is listen and try ne wthings with you.  [u]All the best to you..    


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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ruthiegirl
Wednesday, November 16, 2011, 3:40pm Report to Moderator Report to Moderator

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Kyosha Nim
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Good luck at the Dr today TJ

(((HUGS))) Ribbit.

I'm feeling pretty crappy today too. Definitely another fibro-flare. It's just so frustrataing when I start to feel better and then- BAM! I feel awful again. Brain fog, fatigue, muscle pain.I don't think I have lyme's but I'm not sure how I'd be diagnosed for that, or if fibromyalgia truly can explain everything that's  going on with my body.


Ruth, Single Mother to 20 yo  O- Leah , 18 yo O- Hannah, and  13 yo B+ Jack


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deblynn3
Wednesday, November 16, 2011, 4:25pm Report to Moderator Report to Moderator

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Ribbit when is your appt. ? not to far off I hope. {{{{hugs}}}}}


Swami, 100% me..
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spinnakertech
Wednesday, November 16, 2011, 4:45pm Report to Moderator Report to Moderator
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Quoted from ruthiegirl
I'm feeling pretty crappy today too. Definitely another fibro-flare. It's just so frustrataing when I start to feel better and then- BAM! I feel awful again. Brain fog, fatigue, muscle pain.I don't think I have lyme's but I'm not sure how I'd be diagnosed for that, or if fibromyalgia truly can explain everything that's  going on with my body.


Ruthiegirl,

You're in New York and there are many more Lyme specialists there and along the northern East Coast than in other parts of the country.  I have a terrific one down here in DC in Dr. Jemsek.  I would recommend him to anyone and if you could make the trip down here I would highly recommend it.  But, as I said, there are some terrific Lyme doctors in New York and Connecticut.  Lyme Disease is hard to diagnose and only Lyme Disease specialists are really qualified to do it.  Regular doctors, and especially rheumatologists, are hostile to chronic Lyme Disease and most will do everything in their power to shun your pain and symtoms and tell you there is no cure.

My only diagnosis from a rheumatologist, after going through a battery of blood tests and medical history, was Fibromyalgia and an unidentified auto-immune disorder.  The problem with that is that Fibromyalgia, like Chronic Fatigue Syndrome, and even Multiple Schlerosis, is just a symptom of another disease that these so-called specialists (rheumatologists) have not identified.  Something like 90% of Lyme Disease patients had earlier been diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, Multiple Schlerosis, and even Parkinson's Disease before they finally were diagnosed with Lyme Disease.  Then once they were properly treated for Lyme and co-infections (Babesia, Bartonella, Mycoplasma) the Fibro, CFS, MS, and Parkinson's symptoms disappeared!

Too many people with Fibro and CFS have Lyme Disease and its co-infections as the underlying culprit.  It took an infectious disease specialist in Dr. Jemsek to track down the actual source of the Fibromyalgia diagnosis for me.  I am so glad I did not stop with the Fibromyalgia diagnosis!  I never would have gotten the real help that I needed.

I also had terrible fatigue, muscle pain, joint pain (especially in the larger joints for years and then moving to my hands eventually) and brain fog.  These were just a few of the dozens of other symptoms that I didn't know were related.  I'm not saying that you have Lyme Disease but if it were me (and it was for a long time) I would go to a Lyme specialist to get real answers; whether those answers are Lyme Disease or not.

Best of Luck!!!
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Chloe
Wednesday, November 16, 2011, 4:52pm Report to Moderator Report to Moderator

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Kyosha Nim
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Ruthie, FYI......Dr. Nash's expertise is treating Lyme disease.  


"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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Goldie
Wednesday, November 16, 2011, 5:15pm Report to Moderator Report to Moderator

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Sam Dan
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I agree with the suggestions to see THE most trained doctors.   I suffered for decades only to get well eventually.. in my case my hip injurie was causing all sorts of issues.. once I found Prolo-therapy, my lower back got better and along with it the rest of me..   Now if I could find the cause of recurring 6 hour headaches I would be ...... happy.


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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TJ
Wednesday, November 16, 2011, 6:07pm Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from ruthiegirl
I don't think I have lyme's but I'm not sure how I'd be diagnosed for that, or if fibromyalgia truly can explain everything that's  going on with my body.
To reiterate what spinnakertech said: Saying that you have fibromyalgia doesn't say anything about what's causing it.  "Fibromyalgia" just describes a set of symptoms, much like "Major Depressive Disorder" or "Restless Legs Syndrome".
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JJR
Wednesday, November 16, 2011, 8:19pm Report to Moderator Report to Moderator

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Kyosha Nim
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Leanne, I keep forgetting when you say your appointment is.  I'm going to pray with my family right now for you.  

You will make it!!!  I love you so much and you have helped me so much and I don't know what else to say but God is holding you up, just like you said.  The enemy is all around us, trying to steal our joy and our physical well being, but there is a better day coming.  God hears your sighs and counts your tears.


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
Wednesday, November 16, 2011, 11:17pm Report to Moderator Report to Moderator

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Quoted from ruthiegirl
I'm feeling pretty crappy today too. Definitely another fibro-flare. It's just so frustrataing when I start to feel better and then- BAM! I feel awful again. Brain fog, fatigue, muscle pain.I don't think I have lyme's but I'm not sure how I'd be diagnosed for that, or if fibromyalgia truly can explain everything that's  going on with my body.


I don't want to scare you but I have read about studies done showing a high percentage of fibromyalgia patients testing positive for Lyme.    You might want to do some reading and see if it seems like a good fit.


"Anxiety is the gap between now and then"

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nowishow
Wednesday, November 16, 2011, 11:21pm Report to Moderator Report to Moderator

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Quoted from Ribbit
I feel like I'm dying and I feel like nobody cares.  How's that for a cheery greeting.  I know it'll get better once I'm back on my supplements.  But boy, TJ, I know why you take antidepressants.


I know exactly how you feel. I have spent many days feeling like that. I'm so sorry!!! It will get better, my thoughts are with you.


"Anxiety is the gap between now and then"

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nowishow
Wednesday, November 16, 2011, 11:23pm Report to Moderator Report to Moderator

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Quoted from TJ
My appointment is tomorrow.  I'm excited and nervous.  I hope he sees reason and has done his homework!


Good luck!!! I hope it went really well. Keep us posted.  


"Anxiety is the gap between now and then"

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nowishow
Wednesday, November 16, 2011, 11:30pm Report to Moderator Report to Moderator

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I stopped my medication last Thursday as I was starting to miss work again from too much pain. I was trying to increase my meds (as my doctor would like) but it kicked my butt too hard. So I've taken a week off the bug killing type meds. I'm still taken my supplements so actually I feel a lot better. When I start again on Friday I'm going to start at a lower dose. If I didn't have to work I could stay with the higher dose and get through this faster, I think, but I've got to work. We have no savings having spent it all on the hospital and tests when my body crashed in 3/10. My dad helps out a lot which I'm so grateful for, but I certainly can't do the kinds of treatment I would if I had a bunch of money. I'll just have to be a patient patient.  


"Anxiety is the gap between now and then"

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JJR
Thursday, November 17, 2011, 12:30am Report to Moderator Report to Moderator

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Kyosha Nim
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TJ, I forgot to say, God be with you, good luck, break a leg, all that stuff!!!  It will be great.  You will learn a lot and be able to share it with us!!!!

Nowishow, I can relate to everything you just said.  Except I am not really working like you right now.  But we've spent a ton of money on trying to get me, and my son, better.  Although probably more on me.  But we had to do a lot of work with him too, not covered by insurance.  Seems like MOST things that are worthwhile aren't.  Although I have to admit, our insurance has covered some things that I'm super thankful for.  But we've spent a ton of money out of pocket.  And a lot of it was gifted money also.  God is good and provides.  But it sometimes is wait and pray, figuring out how it's going to all work out.


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
Thursday, November 17, 2011, 2:01am Report to Moderator Report to Moderator

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Quoted from 11080


So I found an amazing LLMD, who happens to be the same LLMD that Kim is seeing--Dr. Jemsek in Washington, DC.  http://www.JemsekSpecialty.com




I am not as happy with jemsek as you are.   I can never get an appt with him because his clinic doesn't manage how many new patients they take each month.  I am supposed to follow up every 10 weeks and see Jemsek but can't get in for at least 4 1/2 months.  I am not feeling like I am going to get better seeing a doctor only 3 times a year.

They know my husband and I are not happy.  Still they are not making any accommodations to get us in to see either Jemsek or  PA without waiting longer than we are supposed to for follow up.  I am on orals but getting ready to change to a different LLMD.

If they can't listen and fix their problems with appointments for people already coming there, then money is more important than the patients.  If they add more staff, that doesn't fix my getting into see Jemsek.  He has to manage the patient load before that is going to happen.

He is a great doctor but I think it speaks volumes when an LLMD continually takes in new patients and doesn't manage his time for the people who have already waited months to get into the system but can't be seen in a timely fashion for necessary follow up appts.  

IV patients get preferential treatment because they pay $2K a month extra to the clinic.  Not a good recipe for success for the patients on orals.
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Goldie
Thursday, November 17, 2011, 1:22pm Report to Moderator Report to Moderator

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I would insist on getting my next two appointments set for the time 'your' calendar allows.

If you were secretary of state you would not be able to just come in or wait.. make them do it .. make you're time valuable as theirs.. tell the doctor in writing that you were not able to make a timely appointment and that he needs to intervene.  If he advised a visit in 2 month then so it should be and he needs to accommodate this.

If you put this in writing with paper copies to the nurses or appointment makers, and the Doctor, you will show them that you are serious.

Any doctor who can't follow up properly is liable for neglect.  He has rights to certain issues, but 'neglect' is not one of them.  


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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ruthiegirl
Thursday, November 17, 2011, 3:52pm Report to Moderator Report to Moderator

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Kyosha Nim
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I'm just wondering how I could go about getting tested for lyme's or co-infections. Bear in mind that I haven't been healthy enough to work in years, and receive SSI for Fibromyalgia. The SSI is supposed to cover just my own living expenses, but with an unemployed ex husband, I'm not getting any child support, so that money needs to support them as well. Thank G-d for my mom's support- without *not having to pay rent* and being able to borrow money for true emergencies (food stamps ran out for the month and I need groceries, the car needs a repair I can't afford, etc) I don't know how I'd  be able to manage at all. Money is tight for her too right now, and I don't want to take advantage of her generosity.

There is simply no way I can afford any "out of pocket" medical expenses right now. It's frustrating how Medicaid would gladly pay for surgury or drugs, but I need to scrounge up the money for supplements. Medicaid will cover any tests I can convince my MD to order, as well as referrals to "in plan" specialists.

I've been trying to muddle through on my own the best I can. It's very frustrating to me that I'm following my SWAMI yet I'm still not well. I've had two major flares since finding out my secretor status and further refining my diet. I'm not sure if these are some kind of herxing reactions, or a sign that there are deeper issues that food alone won't heal.


Ruth, Single Mother to 20 yo  O- Leah , 18 yo O- Hannah, and  13 yo B+ Jack


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spinnakertech
Thursday, November 17, 2011, 4:00pm Report to Moderator Report to Moderator
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Quoted from Kim


I am not as happy with jemsek as you are.   I can never get an appt with him because his clinic doesn't manage how many new patients they take each month.  I am supposed to follow up every 10 weeks and see Jemsek but can't get in for at least 4 1/2 months.  I am not feeling like I am going to get better seeing a doctor only 3 times a year.

They know my husband and I are not happy.  Still they are not making any accommodations to get us in to see either Jemsek or  PA without waiting longer than we are supposed to for follow up.  I am on orals but getting ready to change to a different LLMD.

If they can't listen and fix their problems with appointments for people already coming there, then money is more important than the patients.  If they add more staff, that doesn't fix my getting into see Jemsek.  He has to manage the patient load before that is going to happen.

He is a great doctor but I think it speaks volumes when an LLMD continually takes in new patients and doesn't manage his time for the people who have already waited months to get into the system but can't be seen in a timely fashion for necessary follow up appts.  

IV patients get preferential treatment because they pay $2K a month extra to the clinic.  Not a good recipe for success for the patients on orals.


Kim,

It is tough getting the first few appointments.  But because you are local, you can put your name on a waiting list and when they get a cancellation, they will call you.  That's what I did and I got my follow-up appointment two months earlier than I would have otherwise.  I started my treatment the first week of July instead of the September appointment that I had previously scheduled.  Also, once you start treatment, you will see Dr. Jemsek every 4 to 6 weeks.  I don't know why you think you would only see him three times per year.  He has always been available for my follow-up appointments.  I see him now that frequently--every four to six weeks.  He carefully monitors my treatment protocol and listens to everything I say about how I am doing on the various medications.  He also answers every question I have.

Yes, he is in high demand and it is hard to get the first two diagnostic appointments prior to starting treatment.  He is doing the best he can to help as many people as he can.  He did not create this Lyme epidemic but he has devoted his career to developing what I consider to be the most successful treatment protocol.  He is constantly on the cutting edge of new drugs and incorporates them with success.

By the way, you do not have to pay the $2,000 per month fee even if you are on IV treatment.  There are several payment options--you can do the per diem option where you just pay for the specific medications and supplies as you need them.  Even if you do the $2,000 per month option, they structure the invoice with specific line items, much of which is reimbursable from your health insurance.

I understand your frustration in getting the first few appointments scheduled.  You said that the reason is because the office DOESN'T manage the number of new patients but it is just the opposite--it is hard to get the initial diagnostic appointments because they DO manage the number of new patients.  They're not going to get too many people started at once because they are committed to giving such close attention to each patient once they do get started.  Once you get started on treatment, Dr. Jemsek is very attentive.  Like I said, let the appointment desk know that you are local and want to be put on a waiting list for cancellations.  They usually give you several days to one week advance notice so it's not a last minute thing.
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spinnakertech
Thursday, November 17, 2011, 4:05pm Report to Moderator Report to Moderator
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Quoted from Goldie
Any doctor who can't follow up properly is liable for neglect.  He has rights to certain issues, but 'neglect' is not one of them.  


Goldie,

I think you misunderstand Kim's situation because she did not explain it completely.  Kim has had her first one or two diagnostic appointments but has not yet started on treatment with Dr. Jemsek.  Once she starts treatment, Dr. Jemsek is quite prompt with appointments and is always available for the follow-up appointments in the time that he says.  Dr. Jemsek is not liable for neglect under these circumstances.

Complaining in writing will not likely be effective.  What she can do is get herself on a waiting list for cancellations.  That works very well.
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JJR
Thursday, November 17, 2011, 5:28pm Report to Moderator Report to Moderator

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Kyosha Nim
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I would imagine it's got something to do with the fact that the cases of Lyme Disease are skyrocketing.


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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