Newly diagnosed Lymes - HELP!

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pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/16/2009 7:56 AM (GMT -6)   
This is a very long story, but I'll give you the Cliff-note version. I was just diagnosed with Lymes (Fri) after my blood test yielded a "weak-positive" result. My recent visit to the doc was a result of having flu-like symptoms for 2-3 days. probably true...my wife was sick the week before and my kids were sick with me the following week. The difference is/was.....I had been experiencing constant bodyache and joint pain for several months with elevated temp.
 
I should point out that I removed a tick (or thought I did) back in early November after hunting. I found it, removed it with tweezers and thought that I got him but was always concerned that the head remained. I checked the site repeatedly to make sure there was no dark spot in the site. I got myself a nice bullseye that came and went. I knew I should gone to the doc or at least called it in, but I didn't. I know....very stupid on my part, but here I am in mid-march with a confirmed positive. I still have the discolored nodule on my thigh after 4 1/2 months. I should note that I work in the medical field and definitely know better, but I tend to think that we're the worst patients when it comes to health issues because we know so much <sarcasm>. I've been bit before and have had rashes post bite and never took meds. Blood tests have always come up negative, but I know how I felt and docs are always quick to dismiss that as something else. How could I have it, if the blood test say it's negative??? Well, let me tell ya.....I think I have had it for awhile now and it's not getting picked up fo rwhatever reason.
 
When I found this site through a google search, a posting came up that I read and immediately said "that's me" ! The posting was from 2007 as I just noticed and the things that poster listed - was almost me. Some of which include:
Fatigue, tiredness, poor stamina
Testicular pain/pelvic pain
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
 
I just asked my doc when we spoke on Friday - how am I supposed to know if I have nervous system involvement because my test is a weak-positive? He doesn't really know the right answer and offered to refer me to Rheumatology if my joint pain doesn't get better after taking Doxy for 6weeks.
 
My question to all you who've been there.....am I totally screwed at this point? Is it likely that i will be back to my former healthy self? I'm 43 yrs old and go through most everyday in some sort of pain. I get out bed in the morning like I'm 85yrs old, very much in pain and tired of not sleeping well. I can't sleep through the night at all and haven't been able to for a loooooonnng time. I'm open to any suggestions or comments.
 
Thanks for your ear.
 
Rich
 

Post Edited (pabowhunter) : 3/16/2009 8:00:27 AM (GMT-6)


seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 3/16/2009 8:17 AM (GMT -6)   
Welcome pabowhunter.

I am going to assume your doctor is not an llmd. 6 weeks of doxy will not rid you of it. You need to be seen by an llmd. you may have coinfections.

pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/16/2009 8:22 AM (GMT -6)   

What is a LLMD? I see that all over this forum. I'm not hip to all the new lingo.

What sort of co-infections are you referring to?

 

I appreciate the response and want to get up to speed as quickly as I can. I am VERY nervous about all of the symptoms that I've been carrying around, with no clear understanding of why I have them. I used be a VERY active person, but in this past year.....not so much.

 

Thanks again


alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 3/16/2009 9:46 AM (GMT -6)   
Hi Rich! Welcome to the forum. It sounds like you're beginning to learn more about your health and taking the right steps to get better. "LLMD" is an informal term lymies use to refer to Lyme-Literate MD's. Lyme is a very controversial illness, as you may have found out by now, and LLMD's are the docs (usually the only ones) who will treat people with long-term antibiotics until they actually feel better, not relying on outdated CDC standards that recommend short-term antibiotics.
Along with lyme, ticks can transmit several other bacterial infections, which are known as co-infections. Your body may get rid of some of these on its own, but if your immune system is weak (from lyme), you might have a much harder time kicking them. Some studies have shown that almost everyone who has lyme also has at least one co-infection. These infections need to be tested for in different ways and often need different antibiotics or anti-malarials to cure them. Some of the most common ones are babesiosis, ehrlichiosis, bartonella, and mycoplasma.
You can learn a lot more if you read the sticky thread titled "The Basics." We started that thread months ago just for people who are just learning about lyme, and people have been adding to it regularly.
Welcome again! I hope you find some useful information and start to feel better soon. Let us know if you need doctor recommendations; Ticker (a member) has a list of good lyme docs around the country.
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Treated for two years solid. Diagnosed with Lymphomatoid Papulosis in October 2007. Currently back on abx.

Moderator for Lyme Disease forum


pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/16/2009 9:51 AM (GMT -6)   
Thanks for the info. This forum thing is very new to me, so I'm trying to navigate around as best i can. I'll seek out the sticky thread you mentioned (whatever that is) and read what's there as well.

I know I have a lot to learn and I'm grateful to folks like you to help the newbies along.

judy3
Veteran Member


Date Joined Nov 2006
Total Posts : 667
   Posted 3/16/2009 12:17 PM (GMT -6)   
First consider yourself lucky you know you have LYme Disease and were diagnosed, people run around years from doctor to doctor till they figure this out, 2nd you CAN GET BETTER, it just takes time and effort, you  need to find a doctor that is willing to treat aggressivly, at least 3 months for starters, I was on  antibiotics for 1 1/2 years, if you have cognitive issues or sever eadaces that may be an indication of neuro involvement, learn as much as you can and we are al here to help you

pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/16/2009 12:29 PM (GMT -6)   
Thanks Judy and to all of those kind folks who have posted in reply to my post. As you can tell......I'm freakin out just a little bit. I'm trying to drink in as much info as I can. There's lots of great reference stuff here, so that should help.

I am curious what other lymies feelings are, related to going back to a primary physician with something you've read about here. My doc is the same age as me and I think would be open to it - but at the same time I don't want to be offensive in sharing an article if I think he feels as though I don't trust his expertise. You know how doctors can be.

Thoughts?

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 3/16/2009 12:37 PM (GMT -6)   
pabowhunter said...
This is a very long story, but I'll give you the Cliff-note version.  
 
My question to all you who've been there.....am I totally screwed at this point?
 
Rich
 
Well, the Cliff-note version to answer your questions is, "Yes, you are screwed."  rolleyes rolleyes shocked rolleyes rolleyes
Sorry, just a little dark humor, I've been sick for over 8 years and it's been a while since I've been on this site.

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 3/16/2009 12:37 PM (GMT -6)   
pabowhunter for some reason 2 very long replys that I have posted for you have not gotten on the site. They dissappeared right after I sent them. I too am in the medical field and have allot I want to tell you . Please email me at stonescapes@hvc.rr.com
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!


pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/16/2009 12:39 PM (GMT -6)   
Minerals,
I'm on it.....thanks

alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 3/16/2009 3:20 PM (GMT -6)   
Hey Rich,
Did you find the sticky thread? "Sticky" means it always stays at the top of the list of posts. So if you go back to the main page of the lyme discussion forum, you'll see it somewhere there near the top.
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Treated for two years solid. Diagnosed with Lymphomatoid Papulosis in October 2007. Currently back on abx.

Moderator for Lyme Disease forum


bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 3/16/2009 4:13 PM (GMT -6)   
pabowhunter,

I posted a message to you under the thread titled "has anyone seen a c in southeastern, pa. Please read and email if you would like.

Lots of help here - when I was first sick there was not near the amount of information available nor was the internet support as active as it is now.

Beth

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 3/17/2009 3:24 PM (GMT -6)   
Hey fellow bow hunter!!!

Sorry to hear about your Lyme Diagnosis!!
Are we the same person on opposite coasts? Except I'm female. I just turned 43, I'm an ER nurse (well, hopefully will go back soon?), and bow hunt with my husband. I don't know when I was bitten though and never had a rash. I live in Ca. Been hunting here for about 8 years. Hunted in Nevada 2 summers ago and got cryptosporidium real bad from using creek water for showers. Who knows? maybe bitten there too? I have in-laws in central Pa that bow hunt. I need to warn them more about Lyme Disease!!!

Anyway, this forum is awesome!! They helped me get info to seek out my diagnosis.

Yes I feel 85 y.o. too!!! It will be a slow going process of feeling better, but it will happen! I've been on meds for about 8 months now. I haven't been working since last August and sometimes I worry that my brain might not get back "critical care" standards. But I have faith that I'll be able to stay in nursing of some sort. I think God is re-defining what area of nursing I should be in. I really feel an obligation to get the medical community updated and serious about Lyme prevention, early diagnosis and treatment.

The more informed about Lyme you become, the less frustrating it all is. There's lots of good books out there. Go to the library. I bought some books that I later found there. "Everything you ever needed to know about Lyme disease", "Chronic fatigue, fibromyalgia & Lyme disease", "Coping with Lyme Disease" 3rd edition, and see the documentary "Under Our Skin". They have a website, underourskin.com. When reading stuff about Lyme online, make sure it's new material within the last couple of years. Like everything medical, info changes frequently.

Best of luck to you and God bless- Lisa

ps - think about maybe getting your family tested? IGenX lab tests are good.
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
1/29/09  Added: Rifampin 600mg- Ehrl, Lomatium 15dropsBID-parvo, andrographis 15dropsBID (super yuck!)-LD, Alinia-cryptosporidium.   


pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/18/2009 11:27 AM (GMT -6)   
Lisa Lupner....great name!
Maybe you are my evil twin on the left coast. I used to live in Southern Cal, before moving back here.
I appreciate the book referrals. I've read throughout the various posts, that there are some really good books out there - so I'll be sure to swing by the community library to look into some of them.

Is it standard to get the family tested? I've not seen a lot of that here, but then again....I've only been a member for a few days and haven't poured through all of the posts.

I'm 3 days in with the Doxy and it's already killing my gut. I almost never take meds of any kind, so I am always hypersensitive to whatever it is that I do take. I'm still trying to get up to speed on all the lingo and debating the llmd thing. I notice that the consensus is that it's almost a requirement, but I wouldn't be able to afford it, so it's not likely going to be an option for me.

Stay strong and keep planning on your return to the ED. You bring up a very good point and I was thinking about this the other day about the folks who have advanced Lymes. I wonder how many people have to stop working because of all the ailments.

Thanks again for the note and all the best to you. Let me know if you ever head to PA....I'll take you out for a whitetail adventure.

rich

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 3/18/2009 1:33 PM (GMT -6)   
hey rich,
  if you have any concern that your family has been bitten, get them tested!!!!
All bites need to be treated profilactically.  I never had a rash, so keep that
in mind.
  Please do find an LLMD.  Lyme can screw with you for years, so don't rely on
someone who doesn't know what they're doing.  This is a systemic infection and
if not addressed properly, it will be very difficult to radicate!  Please, see an LLMD.
My insurance covered almost 90% of the visit.
 
By the way, you need to be on at least 400mg of doxy daily to be effective.  Go to the ILADS
website and find the Burasscano 2008 Lyme guidelines.  It's a great place to start.
 
My LLMD treats Lyme and its co-infections til 6 weeks of no symptoms.  So, you will need to be on meds for awhile!  Make sure to read the Burrascano thing. It will really help you figure out what else you need to take;  like acidopholis.
 
I'm starting to get kinda paranoid about going fishing, hiking, hunting, etc. again.  I just read that someone over by you was just bitten again a couple of weeks ago!  And I really worry about my son getting biten.  I hope this doesn't keep me out of the woods!  How do you hunt with a half can of Off sprayed on you? 
 
Lisa
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
1/29/09  Added: Rifampin 600mg- Ehrl, Lomatium 15dropsBID-parvo, andrographis 15dropsBID (super yuck!)-LD, Alinia-cryptosporidium.   


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 3/18/2009 2:47 PM (GMT -6)   
Yeah I dont know much but dont go to rheumatology. They are just like all the others. We all need a Lyme literate doctor they are the only ones who really believe in Chronic lyme which is what you have now since you didnt get treated soon enough or had from a previous bite.

FMS@23?
Regular Member


Date Joined Feb 2009
Total Posts : 24
   Posted 3/19/2009 3:22 AM (GMT -6)   
Hello pabowhunter and welcome to the forum! I read your post and you should know how EXTREMELY LUCKY you are to have caught this disease at such an early stage! I was bit by a tick almost 8 years ago and have came up weakly positive by outdated and insufficient tests for the past few years, but I have never been acccurately diagnosed with Lymes. I am now a 24 year old man and old feel like a disabled 90 year old man. I am in the process of seeing an LLMD and I cannot stress how important it is that you see one ASAP! Take advice from all of the veterans who made suggestions above and know how lucky you are to have caught this in its' early stages!!!

FMS@23?

pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/24/2009 2:50 PM (GMT -6)   

I've been doing a lot of thinking about what everyone seems to be saying with regard to the LLMD. It wasn't until after I shared some resource info from this site with my primary doc, that had me scratching my head thinking he doesn't know what to tell me. Maybe it's me....but I think he's getting the impression that I've just become a hypochondriac.

I'm having a bit of a rough time with the Doxy and don't take it like I'm supposed to because it's killing my gut. If anyone wants to email me a LLMD for the southeast region of PA - I would appreciate it. I've had a strange resurgence of symptoms in the week I've been taking the Doxy, so I don't know what all that's about.....but I know I don't like it. I actually feel worse.

Thoughts anyone?

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