Where are all the Lymies Hiding?

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SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/26/2009 8:52 AM (GMT -6)   
There are hundreds of thousands of people with Lyme that are suffering. Where are they hiding? On this forum we are lucky to get a few members a night to post & reply. Where is everyone else? We have strength in numbers so lets start using it.

Eric

dezynr
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 1/26/2009 10:16 AM (GMT -6)   
I'm new on here. Doing tons of research for my Mom who was just diagnosed with Lyme 3 days ago and is having a really rough time. We live in AZ after growing up in NY and it is ridiculously hard to find any info on lyme in the desert. Any info from anyone would be incredibly appreciated!!!

rvnut
Regular Member


Date Joined Dec 2008
Total Posts : 67
   Posted 1/26/2009 1:26 PM (GMT -6)   
It's a lot harder to find good info on Lyme anywhere you live than it should be. I've found message boards like this to be better than any thing. You're hearing from voices of experience. Some do antiobiotics, some go natural, some do a combination. For instance, I tried antibiotics and found natural is better for me. You'll find lots of supporting folks here and will learn a lot.

How long has your mom had lyme symptoms? If your mom has early lyme, get on antibiotics ASAP! Are you going to an LLMD?

All the best.

dezynr
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 1/26/2009 1:40 PM (GMT -6)   
Thank you RVNUT for responding! I just happened upon here by chance and there certainly is a lot of info. Apparently my Mom has had lyme for quite a number of years and it has been misdiagnosed until 4 days ago. She has been told that antibiotics probably wouldn't work well for her and there are no LLMD's here in AZ. Not that I can find on the internet. Still doing more research though. We are lucky to have an place here called Envita. They want to put her on a 6 week protocol via a chest port. My family is homeopathic and it just seems to make sense for us. What kind of natural therapies have worked for you? From the research I have done and from what I see this is a nasty and horriible disease people hardly know about! I was one of them. But trying to change that. Hope you are well. Thanks again!

rvnut
Regular Member


Date Joined Dec 2008
Total Posts : 67
   Posted 1/26/2009 2:40 PM (GMT -6)   
I'm a big believer in natural. And from what I can tell, Envita is mostly natural.

I went to docs and never did get diagnosed with Lyme. But I had the classic symptoms. I eventually started doing research and treating myself before I ever heard of Lyme. I have one doc that has helped me unofficially because it's out of his area of expertise. Tried doxycycline until it got to my stomach. It helped some, but... Some folks seem to do well on antibiotics (abx).

So now I'm natural. I'm taking a good multivitamin mineral supplement, drink a tea that I believe is antibacterial, antifungal and antiviral (still experimenting 0, and have reduced my exposure to toxic chemicals. It keeps my symptoms down. I'll use antibiotics only as a last resort.

Do at least get a Lyme Literate Medical Doctor (LLMD).

Life'sRhythm
Regular Member


Date Joined Jan 2009
Total Posts : 31
   Posted 1/26/2009 3:39 PM (GMT -6)   
Tell us more rvnut . . . about going all natural. How long were you on abx? How long have you been doing supplements/herbs on their own?

L J

----------
Diagnosed - 12/30/08, Lyme + Babesia + Ehrlichia
Symptoms since approx 06?

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 1/26/2009 3:47 PM (GMT -6)   
Hi Eric! I am one of the "old timers" here, but wanted to let you know that many lymies are too sick, too tired, too busy, or too overwhelmed to do much on the computer even though they want to. Some of us have a negative reaction to the light/radiation from the computer monitors so it limits our time on HW. We still try to help each other when we can though, and hope that everyone will try their best to help all the newcomers. Welcome to HW, Eric.

Hi dezynr! I have a friend that travels to see a Dr Jamison somewhere in AZ. The practice is completely "out of the box" and I do mean "way out". My friend loves the practice and thinks they're great. She travels from central CA and drives all the way there to stay a week or more at a time. If you're interested, I could try and find out where it is. They use lots of natural therapies plus some conventional. If you want to know, send me an email. --------Welcome to HW!

Best wishes to both of you. bablymers mom

rvnut
Regular Member


Date Joined Dec 2008
Total Posts : 67
   Posted 1/27/2009 1:52 PM (GMT -6)   
Hi to L J,

I got on the natural track because the docs weren't able to help me with a body rash, a swelling under my left eye, and facial paralysis about 5 years ago. I started the natural because I found out that many body rashes are virally based and was told my "Bell's palsy" was caused by a virus. Since docs don't have a whole lot to fight viruses with, I decided to build up my immune system and see wha happened. Thr rash went away and the rest seemed to be getting better. Nobody even mentioned LD. At least my symptoms were highly visible so I didn't get laughed at
scool

Last year a doc prescribed doxy. He didn't directly tell me what it was for because LD is outside his area of practice. The doxy helped some so I knew my problem wasn't viral. Once the doxy started to irritate my stomach, I went back to natural since it was working before.

Since I found out about lyme and have been reading about everyone's shared experiences, I' ve been trying different things and keeping the one's that work. I've changed my household cleaners to nontoxic products to lower the load on my detox system. And have recently started drinking a tea that I believe has antibacterial, antifungal, and antiviral properties. We'll see how that goes.

So fat I've been blessed in that things seem to be working. I'm not currently under a doc's supervision. And don't plan to be as long as I keep gradually getting better. That seems to be about as good a test as any.

Are you using abx, natural or both?

Life'sRhythm
Regular Member


Date Joined Jan 2009
Total Posts : 31
   Posted 1/27/2009 2:07 PM (GMT -6)   
I am doing both currently, but want to get to a place where the abx are out of the picture.

Good point, that natural was working before. The abx for me are uncovering years of layers of symptoms. Some of which I had experienced, some which just said hello for the first time. Hard to know what would have laid dormant, or if it all would have surfaced eventually anyway.

I am also trying to watch everything we (family) are exposed to, with cleaners, deoderant, even, etc. I am eating very carefully as well. Only drinking water at this point.

I am taking Cumanda right now and reading the info, it seems like a wonder (non) drug". I have heard many good things. It's only 1 of the many herb blends I am taking. So, I am hoping to come at the Lyme at all angles.

I would much rather stay all natural. I am working with a naturopath so that chance is easier for me.

J L
Diagnosed - 12/30/08, Lyme + Babesia + Ehrlichia
Symptoms since approx 06?


MountainBiker
Regular Member


Date Joined Dec 2006
Total Posts : 106
   Posted 1/27/2009 11:30 PM (GMT -6)   
SickInCT said...
There are hundreds of thousands of people with Lyme that are suffering. Where are they hiding? On this forum we are lucky to get a few members a night to post & reply. Where is everyone else? We have strength in numbers so lets start using it.

Eric
YOu know I wonder how widespread "chronic Lyme" is.  I say chronic in quotes because I don't know what to call what we have.  While I do believe that quite a few people contract this disease, I think most people are lucky enough to a) either fight it off via their immune system or b) get treated at bullseye rash stage and win.  I consider myself unlucky to not have fallen into those two categories.
 
I live three towns west from Old Lyme Ct, right in ground zero.  It seems that everyone, and I mean everyone around here is connected to someone who has gotten Lyme, whether it's a husband/wife, son/ daughter, mother/ father etc.  However, when it comes to life altering Lyme (like what I/we have) it's less common.  I know only of one other person directly and another few anecdotaly (sp?) who have had years long battles, and that's it.  In fact, the vast majority of people around here think that Lyme disease comprises a rash and a few achey joints....If they only knew.
 
So in short, even around here, people are not dropping like flies.  Luckily serious cases of this disease are still pretty uncommon.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 1/28/2009 4:33 AM (GMT -6)   
I think people suffer in silence much of the time. I did - for years - before going to a doctor, only to be told it was "all in my head" and/or "fibromyalgia" (I still get told this even after my Lyme diagnosis). People don't know and neither do the doctors what all symtpoms are from Lyme vs. something else. And with no explanation or no money, people don't get treatment even for their symptoms, or maybe that's all they get (even some with a rash & proven tick bite only get symptomatic treatment). So these folks go on to become disabled later in life because they ignored symptoms (i.e., just grin & bear it) or were unable to be properly diagnosed/treated.

One statistic I saw somewhere says up to 90% of people diagnosed with Fibromyalgia actually have Chronic Lyme. That's a lot of people. So I think the answer to the question posed at the start of this thread is that the people with Chronic Lyme are in other support groups due to misdiagnosis and ignorance.

Just my humble opinion,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), IV Cipro (for G-tube site infection).


susan1122
Regular Member


Date Joined Jan 2009
Total Posts : 42
   Posted 1/28/2009 10:45 PM (GMT -6)   
Wow, Mountainbiker...that is so surprising! I've had what I would consider to be chronic Lyme for years. I would have thought it would be prevalent around that area of CT. No wonder the IDSA gets away with saying it doesn't exist...which just makes me so angry.

And yes, Razzle, I think the misdiagnosis is huge. My 1st LLMD (who wasn't one at the time) told me I have Fibromyalgia, but that is a symptom, not a diagnosis. She told me she would be doing me a disservice if she didn't dig further and she is the one that did diagnose the Lyme after I had had it for 13 years.

Eric, I read your story on the other thread...so sorry! I hope you get your life back soon. I know how if feels to not be able to do anything - get anything done and not feel better. : (

concordefan
New Member


Date Joined Jan 2009
Total Posts : 8
   Posted 1/29/2009 12:29 PM (GMT -6)   
I am on Vancouver Island where apparently there is no lyme disease.  Somehow the ticks know to stay in the USA and do not cross our border...   bad case of denial with our medical system,  to say the least. 

susan1122
Regular Member


Date Joined Jan 2009
Total Posts : 42
   Posted 1/29/2009 12:31 PM (GMT -6)   
Hi concordefan....yes, that sounds familiar. So many Doctors in so many states down here say the same thing... "There isn't Lyme disease in Ohio" etc, etc. From what I understand, it's all over the world.

strange violin
Regular Member


Date Joined Aug 2006
Total Posts : 134
   Posted 1/29/2009 3:17 PM (GMT -6)   
Sometimes focusing on any aspect of this illness (these illnesses, really) except fighting it in my own body is just too depressing. The sheer weight of all our uncertainty and pain together can get me down. So I just lurk sporadically these days.

Tracy Will
Regular Member


Date Joined Jan 2008
Total Posts : 37
   Posted 2/2/2009 10:25 PM (GMT -6)   
www.lymefriends.com

www.lymenet.org
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