How is POST LD SYNDROME treated???

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stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 1/3/2010 9:30 AM (GMT -6)   
I w as just wondering how people who follow the PLDS ideology treat themselves??? Do they just treat the symptoms individually?? Believing that there is no active infection??  I find my self doing this more and more. Just treating the individual symptoms. I have an appointment for a neurologist and an endocrinologist.  I dont feel that abx are going to FIX these problems. This is permanent damage???

Harleyrider
Regular Member


Date Joined Sep 2008
Total Posts : 283
   Posted 1/3/2010 9:39 AM (GMT -6)   
Just curious what your symptoms are...My lyme doc told me I was just dealing with post lyme symptoms
and I didnt believe him and went to a new LLMD andl I am still infected. And the coinfections showed in
this lab work and not the first.
 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 1/3/2010 10:01 AM (GMT -6)   
Yes, if a person is diagnosed with Post Lyme Disease Syndrome, they are treated symptomatically and may also be treated for "depression," "somatoform," etc.
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently trying to wean off TPN.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, Milk Thistle, Ailanthus, homeopathy.


OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 1/3/2010 10:07 AM (GMT -6)   
Personally, I believe, lyme does so much damage, causing so many imbalances and often goes untreated for so long that like Burrascano states, all of these "issues" must be treated individually, not just the lyme. They may or may not be permanent, but once identified, most should be treatable.

For me, I was undiagnosed for so long that my endocrine system has completely been unbalanced. I am adament about not just treating the lyme but my complete endocrine system as well, (thyroid, sex hormone imbalances, etc). Also, the Gut is said to be the most important to good health and I believe the hardest to maintain for so many with chronic illnesses.

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 1/3/2010 10:17 AM (GMT -6)   
Oh, I have a lot of symptoms. Arthritis, fibro pain, neuropathy, memery loss, GI prlblems, etc. .. I was just told that my thyroid is high, so I need to deal with that.  I scored a 28 on the CD57 and Have had LD for 29 years. I have never had IV or long term abx treatment. --------- -I am going to the endocrin. to check out my hormones and thyroid. I believe that my body has been DAMAGED. I am not comletely sure that I beleive I have an on going infection.

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/3/2010 12:46 PM (GMT -6)   
stutterbug said...
Oh, I have a lot of symptoms. Arthritis, fibro pain, neuropathy, memery loss, GI prlblems, etc. .. I was just told that my thyroid is high, so I need to deal with that. I scored a 28 on the CD57 and Have had LD for 29 years. I have never had IV or long term abx treatment. --------- -I am going to the endocrin. to check out my hormones and thyroid. I believe that my body has been DAMAGED. I am not comletely sure that I beleive I have an on going infection.


I think this is what makes treating Lyme so difficult. There is still so much unknown about this disease, and other co-infections that even the medical community is divided over how to treat, and for how long. I often wonder how much of my symptoms are from the damage caused by the infections, and how much if any is from a continuation of the infection. I think it's great you are being as through as possible. I hope you seeing a endocrin will give you some answers to the puzzle.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 1/3/2010 1:30 PM (GMT -6)   
Hi all,
 
I believe that once "active lyme" has been treated, toxins are left over (research proves this) and that if a person doesn't go on a strict detox regime they are going to suffer from those toxins. 
 
I truly believe that detoxing is half the battle in this disease, during and after.   I think my hands are slightly arthritic but I have no pain so I'm not really sure about that.  Also, I'm no spring chicken!  But I do continue to detox (baths, foot baths, coffee enema's, etc.).
 
Denise


It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/4/2010 2:43 AM (GMT -6)   
Denise,

Where can I get all the supplies to do a coffee enema? Are there directions?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/4/2010 2:47 AM (GMT -6)   
Hey stutterbug,

From what I have be told by two LLMD's and from reading and researching....if your CD57 is low, there is something suppressing your immune system, whether it be Lyme Disease or something else.

I know how frustrating this all can be. I feel like I'm always running into a brick wall and wish that I could just treat the symptoms so that I could function.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/4/2010 6:24 AM (GMT -6)   
I think being chronically ill for so long breaks your spirit. First you fix the body , then you fix the mind is what Bikram (yogi) used to say. So maybe we need a whole new approach for rebuilding our spirits after going through all this. My doctor said that it almost seems like part of what the spirocchetts do is break your spirit so you will still be easy prey. so maybe ...pray. xxxx
I just heard tht of all people , Wayne Dyer has leukemia.... so go figure.
hep c , lyme
Dad has lyme


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 1/4/2010 6:37 AM (GMT -6)   
Hi all,
 
Bucci, that's why I believe Dr. Jernigan's protocol is so fantastic because he address the mind, spirit and body which only makes sense to me as when one part of the body is out of whack it affects the rest of the body.  
 
CG, I bought my enema bag from this site (I bought the premium 2 quart bag for $39.95):
 
 
If you click on the left side there are instructions (I never tried wheatgrass or the other types they mention) and I should say if I feel full down there, I first do a clear water enema and then I do the coffee (I buy organic coffee from any market already grounded).  
 
 
 
I hang the bag on my towel rack (never measured how many feet it is from my butt!).   Just click around the site as it has really good information.
 
I was really nervous about doing it the first time but felt really good afterward so it's worth it, believe me!
 
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/4/2010 7:07 AM (GMT -6)   
right on to the enema's ! are they coffee. I'm going to the site now. I have the hep c thing so coffee enemas is my big life saver but now I really have to do more. My brain is so fogged it hurts. you think getting oxygen tank will help? I'm checkin out the site now...thanks.
hep c , lyme
Dad has lyme


CatDuck
New Member


Date Joined Jul 2009
Total Posts : 9
   Posted 1/8/2010 11:49 PM (GMT -6)   
Cajungirl,
Please excuse my ignorance but I thought the cd57 was only indicative of low immune due lyme's disease. Would you mind directing me to information that shows other illnesses that cause a low cd57? Thanks.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 1/9/2010 11:52 AM (GMT -6)   
Hi bucci,
 
What helped me with brain fog was Dr. Jernigan's Neuro-Antitox CNS/PNS Formula, it really clears the brain of toxins and ammonia.  You may want to give it a try but if you are taking antibiotics then please be careful as his botanicals do contain alcohol.  Are you taking detox baths and doing foot baths as well as dry skin brushing?
 
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 1/10/2010 10:03 AM (GMT -6)   
Catduck, from all my research on the CD57, it is only indicative of Lyme. AIDS is mentioned in what I read, but there is another CD number used more when testing AIDS.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 1/10/2010 2:50 PM (GMT -6)   
CD4 is used to monitor AIDS.
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently trying to wean off TPN.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (used topically), probiotics, Milk Thistle, Ailanthus, homeopathy.

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