Let me start by saying that I know the importance of going to an LLMD, but right now, all I can really afford is a regular PCP doc.
That being said, she is working with me in attempting to figure out what's wrong. Any expert advice from you guys would be most helpful!
A brief history:
I live in Southeastern PA, and spend time in the woods occasionally.
1-2 days of a brief flu-like illness--nausea, vomiting, fever, aches, chills in May 2005.
Noticed a purplish-red circular rash, with a dot in the middle, thought it was a spider bite, in June 2005.
Developed severe headaches around the base of my neck, stiff neck, back. Achy heel and hands. Persisted about 2 months.
Early August of 2005, noticed 5-6, some very large, atypical, elongated red bullseye rashes on my back, chest, and legs.
Went to ER. Treated for Lyme based on clinical symptoms-- 3 weeks of doxy, 100 mg, twice daily.
Quest Lab work showed: CDC critera
ELISA: 2.15, >1.09 is positive Western blot: IgG was negative IgM was positive specific bands weren't reported
SED rate was slightly increased ANA titer was < 1:40
Rashes seemed to fade fairly quickly and I felt generally well within 2 weeks.
A few months later I started to develop some sleep disturbances throughout the night, awakening with a rapid heart beat. I was also experiencing intermittent chest pain.
Random bouts of achiness persisted, tip of tongue went numb/burning feeling for about 4 days.
Went to PCP Dr--not the same one I have now--to explain symptoms. She said that it was probably just stress and that it was most likely nothing. To humor me, I think, she reluctantly did another Lyme test.
The only results she communicated to me was that "it was a past infection." And she said that "you can take more doxy if you want to?"
I opted to take another 3 weeks of 100 mg, twice daily of doxy. Felt OK for the next month or so.
Developed another 1 day fever, chills, aches, sinus infection like illness.
Began to develop a lot of fatigue and aches in the knees, ankles, toes, heels, and hands. As well as intermitent pain in the back.
To follow that were muscle twitches in the legs, neck, upper lip, back, chest, eye, and stomach. I get them almost every day, mostly at night. Some are visible, others I can only feel.
I have also developed a numb feeling on one side of my face that lasted only a few hours, and a tingly scalp.
Currently I have swelled up neck lymph nodes on my left side, a pounding headache, and a rash across my cheeks and upper chest area that seems to get worse in the sun or hot shower.
WOW!
I'm sure there are plenty more symptoms that I have forgotten, but that's what I can recall.
My current doc is retesting me for Lyme, through Lab Corp, as well as a bunch of vitamin/mineral deficiencies, and a blood count.
I guess I'm just wondering what my chances of still having Lyme are, even after 2 "treatments", or the possibility that it's something else?
Many thanks in advance...I'm a little worried at this point.
Posts: 29 | From Valley Forge, PA | Registered: Jan 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
you sound like me a lil bit when i first got sick.
i am also from SE Pa...home of the TICKS.
i came down with bronchitis in may 05...remember a purplish bite on my leg around that time.
then had bad wrist pain and lower back pain, neck pain. thought it was from sitting all day long.
i went away on vacation and had an anxiety like attack...my body was doing its own thing and i couldnt figure out why i was so sick.
Had head pressure...dizziness from aug05-oct05 duck put me on steriod and zmax...and the rest is history.
what about testing for coinfections?
And yes you still could have lyme
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
The treatments that you've had have been way too brief! You tested positive at one time. The 3 weeks of doxycyline most likely never got rid of it then. Sometimes it just sort of 'hangs out', not really making you feel sick until something happens - trauma, stress etc.
You MUST get tested for co-infections in addition to finding a LLMD. The longer you wait, the more chronic the Lyme becomes, and the more difficult it is to treat.
I, too, live in SE PA - York. My whole family has tested positive!
Posts: 2097 | From PA | Registered: Jan 2004
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posted
bp, If I were you I would make an appt. w/ a LLMD asap. Your symptoms are all to familiar to me.
I know this is kinda complicated to understand at first but the more you read on this board the more you will learn, especially that your 2 abx treaments were not even a drop in the bucket.
I'm afraid your PCP will have you do the duck dance as I did and waste vaulable time and $$$.
You have had positive tests at mainstream labs. Yikes! I wish I was that fortunate to have that intel from the begining.
Good Luck, Stella Marie
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Your chances of still having lyme are pretty close to 100%. If I were a llmd I'd say 100%.
Perhaps your PCP will consult with a llmd? Some do that you know.
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
If your PCP is open-minded enough, ask if she would do a phone conult with an ILADS doctor. They may be able to talk to her about treatment methodologies, and let her decide which ones suit your situation.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
Thanks for the advice. I just received a call from my Dr. with the results.
No abnormal blood work, however...
Labcorp Lyme test: IgM/IgG EIA 1.15, >0.9 is positive
Western blot: IgG: positive for 4 bands (waiting to hear which) IgM: positive for band 23 (which is Bb specific for outer surface protein C; OspC)
So, I finally seroconverted with a new IgG response, and am still showing current infection with a sustained IgM.
I don't know whether to be happy or sad at this point. Lyme is no fun struggle, but at least it is treatable. (hopefully)
My Dr. wants to proceed with Lyme treatment. She seems fairly open minded and is willing to listen to me. The last time I went to see her she mentioned something about Flagyl.
So guys, I need some advice as to which antibiotic regimen I should be following? I will also bring up to her the possibility of co-infections.
Many thanks in advance!
bp
Posts: 29 | From Valley Forge, PA | Registered: Jan 2006
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bettyg
Unregistered
posted
do a search, top part under POST REPLY, for flagyl, in medical section, 60 days unless your PROFILE shows any data going back years!,
flagyl in SUBJECT ONLY,
no number of poster and enter
should be 100+ replies to someones flagyl experiences; most bad; some good.
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there BP,
Your PCP will work with you or an llmd until her colleages tell her of doctors being sued for fraud...
I suggest you work fast and get IV or IM abx with flagyl to attack this disease while you still have her attention...
In a little while she'll probably dump you as a patient...
get dr B's guidlines or ILADS for her to digest....or you'll be sick a long long time...heck you may anyway....100 mgs of doxy for three weeks is like urinating on a forest fire.good luck...zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Your story sounds so much like mine--only I didn't get this window of opportunity that you have now. You also are lucky enough to have a positive ELISA so there will be fewer insurance problems.
I went 4 1/2 years misdiagnosed and now 5 more years I am finally nearing the end of my battle, I hope. The point being, get as much help as you can NOW. If your PCP will get you IV drugs, great. If they will get you oral ABX, it's a start. Use whatever they will give you, but find a LLMD you like.Advice given by the others to test for coinfections is a MUST.
I live in SE Pa too. There is too much lyme disease in our area not to do something about it while you still can. If you are in the Valley forge area ( Chester County) you have the highest rate of lyme disease in the state. That alone should tell you something.
The doxy you received wasn't enough to kick the original infection. It didn't even cover the initial cycle of Bb replication--4 weeks. Depending on your weight the dosage may not have been high enough.
Sounds ominous. It could be. But as much as treating this will inconvenience you now, it will save your future.
Sorry for the lecture. It's just after hearing so many stories and living them myself(whole family has had various forms of lyme and coinfections) it saddens me to see the whole thing repeating itself for someone else.
Good luck. Sounds like at least your PCP is open minded. My suggestion, if you have a choice use tindimax instead of flagyl. you should have fewer side effects of the abx that way.
Like others state, I am not a MD and this is not medical advice, just a reflection of my own experiences and opinions
Posts: 132 | From SE Pa | Registered: May 2006
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you guys are so helpful
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I wish I was that fortunate to have that intel from the begining.
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