What is the Worst thing about Lyme's?

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lymesolution
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Date Joined May 2010
Total Posts : 16
   Posted 5/18/2010 1:47 PM (GMT -7)   
I would like to know what is everyone's consenscious about the worst problems associated with Lyme's, and would also know what everyone thinks should be done for solutions.

springsjean
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Date Joined Mar 2009
Total Posts : 2154
   Posted 5/18/2010 2:21 PM (GMT -7)   
I think the worst thing is the stigma of being nuts. Since so few people know or understand lyme, I myself have found myself constantly trying to explain it to everyone, hence coming across a little strong and looking like I am a looney bin or hypochondriac. I really don't think the majority of people believe there is anything wrong with me or at least not to the extent of how I feel. Its one thing to be sick or struggling mentally, but to be doubted is horrible. As far as symptoms, I'd have to say the anxiety. To not be comfortable in your own skin is a terrible terrible thing.

Kodak
Regular Member


Date Joined May 2010
Total Posts : 74
   Posted 5/18/2010 2:40 PM (GMT -7)   
I totally agree with springsjean. To feel this bad and not have anyone believe you is really hard to handle.
I also think its the terrible inaccurate tests to diagnose.
And, how not many doctors know enough about it to treat it.
Dont they teach about Lyme Disease in medical schools? Especially since its such an epidemic?

Razzle
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Date Joined Aug 2007
Total Posts : 4399
   Posted 5/18/2010 2:51 PM (GMT -7)   
Yes, Lyme is taught in medical school, but it is doctors firmly entrenched in CDC/IDSA dogma who write the material that is taught.

I agree that the worst thing about Lyme is doctors' lack of understanding and knowledge about this disease, which then has turned us into a stigmatized "somatoform" or "hypochondriac" population in the eyes of the medical field. The second worst thing about Lyme is the lack of insurance coverage for long-term treatment. And also the attacks on LLMD's.

It is my opinion that good quality research from respected institutions is the only way to overcome these things (the CFSID and AIDS groups have been able to do this...). The trick is convincing researchers at these institutions that this is necessary.

Ok, for the worst Lyme symptom itself, I'd have to say the ability of the bug to rob us of basic bodily functions (such as the ability to eat, or the ability to walk, or the ability to think clearly), often without abnormalities showing up on any tests (hence contributing to the idea that we're "nuts" even when we KNOW we aren't).
-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 weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


lymesolution
New Member


Date Joined May 2010
Total Posts : 16
   Posted 5/18/2010 3:12 PM (GMT -7)   
to all the reply's how can i help you all? if i thought that there was solutions would you be open to hear of a possible one? let me know for my 2 cents worth.

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 5/18/2010 3:52 PM (GMT -7)   
I think the worst part is looking totally fine to everyone else. I even know I look fine so to say I feel awful or don't want to get out of bed does seem crazy. Then I start to feel crazy. In fact, I have lost weight from this and I have more people now telling me I look amazing! So, as far as a solution to that? I don't think there is one. My sickness isn't going away and I look great. So it is like suffering in silence. The minute I start to talk about it I can see eyes roll. Just one of the MANY horrible things about this disease. And of course the not feeling good part. And when you do it is short lived.

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 5/18/2010 5:14 PM (GMT -7)   
The worst part for me is not knowing when I should expect to start feeling better. Will all of my symptoms eventually resolve or will I have to deal with this the rest of my life. We need better testing to accurately diagnose lyme and all of the associated co-infections. We also need to develop a clear cut treatment protocol that is effective for all. Why does the CDC still specify treatment guidelines that cause so many, so much suffering?

Hang in there folks, we will get better.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin.
 
 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 5/18/2010 5:14 PM (GMT -7)   
lymesolution,

Not to be a skeptic, but I'm a skeptic. If you weren't selling something, why wouldn't you just make a detailed post here on the forum about what your proposed solution? If you are selling something, then your ambiguity and dancing around the subject make more sense. Please enlighten those of us (with moderator permission, of course) who are looking for answers what your "solution" is - specifically.

Thanks,
-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 weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 5/19/2010 5:32 AM (GMT -7)   
I agree with Razzle. If there was one simple solution, we'd already all be doing it. The problem is there is no one simple solution.  We're skeptical because we live this and we know how it all works.  Sure sounds like a sales pitch to me...

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 5/19/2010 3:28 PM (GMT -7)   
Worst part of Lyme for me is people that claim they have the "solution" to it all...even if someone does have an idea about how to "fix it", its not a one size fits all kind of disease...

lylaso
Regular Member


Date Joined Jan 2010
Total Posts : 57
   Posted 5/19/2010 4:36 PM (GMT -7)   
Anxiety....feeling like something bad is about to happen...can't catch my breath neck tightens, I never had anything like this before and it is really disturbing.
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