i already had a suspision of lyme and had 3 igeneix tests..this was proior to 2010 when i had to stop working from illness.
in 2011 on an unusally hot day in CA a friend took me to a beach in northern ca and when we were going home i had big welt in the middle of my back I guess like a rash..
the welts spread to other parts of my torso and lasted a few days. ( i dont remember exactly) anyway since then i have my fatigue and feelings of overwhelm have gotten worse.
I started seeing dr g who thankfully takes medicare and we retested at igenix, and now the +++ from the bands are worse they they were in any of the tests before-
it almost looks like a reinfection or new infection to me. is it possible to get lyme from something on the beach?
i just started with Dr. G, and we are doing chlorrla and glutathione for a month then i revisit. we'll see how it goes. thank you. c
**edited name of LLMD per LN rules**
[ 07-04-2015, 10:57 PM: Message edited by: Lymetoo ]
Posts: 34 | From california | Registered: Jan 2015
| IP: Logged |
posted
I read about a lady that got bit on the beach on the East coast. That was a long time ago though, and I don't have the link.
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I got Lyme & co-infections from many, many kown tick bites from the beach in Montauk (last town out on Long Island). We walked through the dunes to get to the beach, and we very
frequently got ticks on us. We didn't know it was a problem back then. And we burned them off with a match, which we now know is the wrong way to take them off.
You obviously didn't know you got a bite, but, yes, there are deer, mice, migratory birds, plus brush on beaches Also, other biting arthropods (spiders, for instance), or other biting insects,
flies, etc.
Why is your doctor only giving you nutrients? Is it because he/she was waiting for test results? Or was the first thing you listed not a nutrient (not sure what that is)?
Posts: 3770 | From around | Registered: Mar 2008
| IP: Logged |
posted
I also had many tick bites as a kid in the midwest where i grew up, indiana..and as an early adult. as a kid my family like yours would burn the ticks off. It totally makes sense now that i could have picked up a tick that day at the beach..thats for explaining.
i have been trying provigil and nuvigil for energy and they seem to be backfiring on me and my brain..
i am not sure why the dr only gave me nutritionals we had the lyme test and he said it was positive..it is a long drive for me to get to him and by the time i am there i am really in a whole different zone- hard to focus ..but doing the best i can. I think he said he wanted to see how i did with the chlorella challenge and "detox" first.??
Posts: 34 | From california | Registered: Jan 2015
| IP: Logged |
posted
just taking your mind hey and not treating you properly, sounds like LL Dr making false promises and no ABX treatment to protect his license.
Posts: 532 | From Texas | Registered: Oct 2004
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Since you've been sick for so long without proper treatment and are so fragile (not able to work)..
And you had many tick bites over the years in totally different locations, and since you broke out in multiple rashes when you believe you were bitten after childhood, the doctor may be trying to clear out as many existing toxins as possible and build up your immune system some before you start on antibiotics and have a herx.
In your case I personally think this is a wise move. The sicker you are when starting antimicrobials, the worse the herx can be. Herxes can make you deathly ill, put you in the hospital and can kill you.
Do you know if the doc tested you for MTHFR? Or any genetic abnormalities? Or any coinfections? This can also be a factor in deciding how to treat.
Hope you feel better soon and next time you are there, just ask the doc about any concerns you have. He/she may have a very good reason for doing your treatment protocol in this manner. Many LL docs are doing the same thing, so it is not unusual.
posted
Also sand fleas may be implicated in transmission. We have someone here who guessed that's how they got Lymed, although I guess not sure, because might have never seen a tick.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
the lyme dr' isn't rxing the nuvigil .. i asked one of my primary dr for it because i couldn't function.
trying to figure out how to post labs.. i have a few of them.. but have put them all onto one excel sheet. - is there a way to post the excel file? thanks!
Posts: 34 | From california | Registered: Jan 2015
| IP: Logged |
posted
i have coinfections that were tested in 2009 and 2010 along with another western blot but not sure how to post? thanks folks!
Posts: 34 | From california | Registered: Jan 2015
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I see ticks at the beaches in Northern California all the time. That's where I saw my first tick actually. Nasty things.
I agree. You need a new doc. Nutritionals are nice, but not at this point in treatment.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
quote:Originally posted by Judie: I see ticks at the beaches in Northern California all the time. That's where I saw my first tick actually. Nasty things.
I agree. You need a new doc. Nutritionals are nice, but not at this point in treatment IMHO.
posted
Mine was a sandfly, about 20 years ago, kicking back one weekday on the beach. On my left shin. Hurt like hell, too.
Bite flaked over like a glazed sore, after being red, weepy and angry looking for a week or maybe more. After all this time, and the trials and tribulations that go hand and hand with this adventure, it's difficult to keep all the facts and figures straight anymore.
After that... Random weird sores...appearing like the way I would imagine burn marks from a cigarette might look if applied to the skin Usually only one, possibly two eruptions. On the thighs, the forearms. Flaking over and disappearing slowly. Appearing still during flares, stress overload, hormone fluctuations. Suspect it's a case of Fl-1953, as I have many of the symptoms on the so called list.
Posts: 192 | From New England | Registered: May 2011
| IP: Logged |
posted
there is a good dr very close to me but doesn't take insurance and i can't afford him.
the new dr i have only seen 2 1st time they ran alot of test .. 2nd visit he reviewd them and recommended the "detox suppliments" i go back in 2 weeks and see is PA . then in a month to see him
my rent is going up $200a month here in the bay area in oct.. so i am going to be even more limited..
i hope the new dr that takes insurance to did the "detox suppliments" will work out becasue i can't afford the others.
it is almost like you have to be rich to have lyme disease.
Posts: 34 | From california | Registered: Jan 2015
| IP: Logged |
posted
anyone have any thoughts on the labs posted above? thanks
Posts: 34 | From california | Registered: Jan 2015
| IP: Logged |
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I'll let others who know far more chime in but my suggestion would be to test for co-infections.
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
posted
"Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all."
posted
I take it you're listing IgM first and then IgG? You have several positive bands there.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
that is a good article Lymetoo.. i will have to read it in small chunks. oddly my western blot from 2010 appears negative, while the 2015 does not- that is why i think i have gotten a more "recent" within the past 4 years infection.
posted
i made space btwn the numbers but when i post they get scrunched back together again. sorry.
Posts: 34 | From california | Registered: Jan 2015
| IP: Logged |
posted
Take out any that have a " - " next to them. Makes it easier to read. Post only the positive bands.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Post all of the IgM results first.
Then, make a second list of the IgG results.
For the coinfections, you also have to tell us what the lab says the normal range is.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
HI sorry it has taken me so long to get back to this.. i dont get as much done in a day as i used too. here are the IGM IGM 18- **23-25- 28- 30- **31 + **34 IND **39- **41 + 45- 58- 66- **83-93-
Posts: 34 | From california | Registered: Jan 2015
| IP: Logged |
posted
Here are the IGG.. i will try to get the co infections posted later today..thank you! IGG POS 18+ **23-25- 28- 30- **31 IND **34 - **39+ **41 ++++ 45- 58+ 66- **83-93-
Posts: 34 | From california | Registered: Jan 2015
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic