posted
Hello, I am new to lymes (diagnosed in Aug)have been really sick since June 24th. Yea I know the day, BAD day. I have been on 2 courses of antibiotics (Doxcy) for 15 days each a month and a half apart, not much help some.... But I have been having a different infection of some kind almost every month. Last month was a herpys type rash on my hand, doc put me on anti viral med helped. Then 3 weeks ago notice a sever dry mouth and I end up with thrush now on my second course of anti-fungal meds. Has anyone else had problems like this and yes I am getting most of the classic signs for lymes along with the infections. Any other info you can give me I would greatly appriciate. Oh ya going to see a Infectious Control doc tomorrow, first time.
Also new to typing anything in a "forum" so if I screw something up let me know.
Posts: 33 | From Clearfield, Pa | Registered: Oct 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Eliza. Welcome to LymeNet!! Though sorry you have to be here.
First thing you ought to do is find yourself what we call an LLMD. That's "lyme literate medical doctor."
The Infectious Disease doctor you're about to see will be in denial about lyme -- they all are. He'll say there's no such thing as chronic lyme. He'll say you're cured, and any lingering symptoms are "post lyme syndrome." Yeah, RIGHT. Don't bother with him!
Second thing: Lose the "s" on lyme -- there isn't one!!
Third thing: You may have gotten a co-infection along with lyme. They're very common. Such as: babesia, bartonella, ehrlichia, etc. Some estimate they are as common as 60% with tick bites. Most regular docs are clueless about this and won't even think to test you. Meaning: You'll never get better from lyme. The treatment is usually different for co-infections.
Fourth thing: The "thrush" you have. It's most likely yeast. Pour antibiotics on and you're guaranteed to kill off your GOOD bacteria in addition to the bad ones. You MUST be supplementing with a seriously good probiotic like Theralac, PLUS cutting out carbs and sweets in your diet, when treating lyme. Regular doctors are similarly clueless about this. A course of Diflucan will fix it for the moment but for longer term, probiotics are a must.
Fifth thing: Your regular doc probably had you on too-low a dose of Doxy. Let me guess: 200mg a day? Not enough. 400mg is more like it. 200 tends to inhibit growth, but doesn't KILL. You want to KILL!!! Wipe out!! So it's no wonder you still feel sick.
If I were you, I would post in "seeking a doctor." Be sure and put your city and state. There are SO many frightful experiences here with infectious disease doctors. In fact, they recently authored Guidelines claiming there's no such thing as chronic lyme. You are almost guaranteed to have a BAD experience there, or be told you have something else entirely, or never had lyme to begin with, or be offered an anti-depressant.
Good luck, read the Newbie Links and learn everything you can, and find an LLMD. It's your best shot at NOT becoming chronic!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Ditto what Michelle said...over and over again!!
I do hope you will consider not wasting your time on the Inf Disease "doctor". They have no clue when it comes to Lyme disease that hangs around after 2 weeks.
Be sure to buy a high quality probiotic like Theralac to keep the yeast at bay.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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ByronSBell 2007
Unregistered
posted
Yes, find a Lyme only Doctor and have him treat you for lyme, yeast, and any other co-infections.
PB8 is also a good pro-biotic that is at alot of health food stores
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Welcome, and I agree with what everyone else is saying, get to an LLMD ASAP!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Up so this doesn't get lost!
Hey Eliza, if you scroll down toward the bottom of the page after reading your replies, you can hit "Reply" and check back in on your thread.
What symptoms do you have, for example? What are your worst ones? What was your dose of doxy? Are you done with your second dose?
Anyway, let us know you're still with us, 'kay? We want to prepare you for what you'll probably hear tomorrow from your I.D. duck (pet name for non-lyme literate doctors around here is "ducks")!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
i sent you my 79 pages of newbie package of links, advise, symptom, tests, disability including more much including treepatrol's archive of over 10000 good lyme links!
take it in bits/pieces and just SKIM it first to see what it in there. highlite the parts you are intereted in purusing.
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posted
Definitely look into the Marshall Protocol. A good place to start is at the Bacteriality website, specifically here.
I am convinced Marshall's pathogenesis for chronic disease is accurate. Whether or not the Marshall Protocol itself is a cure remains to be seen in my opinion. However, I am convinced it is the safest long-term antibiotic treatment available.
Fortunately it seems that the "bacteria" that cause "Lyme disease" grow/mutate/reproduce very slowly so you have plenty of time to do your homework before trying any new treatment!
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007
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posted
WOW!!! Thank you so much for getting back to me so quickly. Just a side note if I say or spell something wierd you'll have to excuse me, my brians fried. It doesn't want to work properly anymore. I have a feeling you'll all understand this. As I said thank you all so much I really feel alone in this at times. I think my kids and husband think I'm must be making this whole thing up all the time. And I get frusterated because I can't get them to understand and I cant do things like I use to. The least little thing wipes me out.
Ok so to answer some of the questions and reply to some comments:
1. My regular Doc, god bless him, has tried but my last visit he knew when to say when. Which is why I'm going to the Infect Doc or "Duck" see Im learning already haha.
2.Recently while trying to educate myself I did run into the Babesia infection on the textbookofbacteriology.net website and also read abut co-infections. i have been reading and rereading a lot trying to figure out WHY THIS WONT GO AWAY!!!!
3. My symptoms are: Fatigue (all the time)bad, muscle aches (in muscles I didn't no I had like Feet), there has been this sometimes accute pain always tender to the touch right below the bottom of my rib cage in the middle, have no idea why. Sever dry throat. Im either light headed dizzy or nauseated once in awhile all the above. Mood swings or I feel like I'm walking around with my head in the clouds. Those being the worst symptoms. Lesser symptoms include swollen glands front and back of neck and groin, blurry or see spots, and confusion ie cant remember things, forget simple words or things, no concentration and am turning into quite the clutz, weight gain, shortness of breath or feel like somethings sitting on my chest and hearing things at times or cant hear very well.
4. Im taking Diflucan 100mg a day first time for 5 days this time for 7.
5. I took a 15 day course of doxy 200 mg back in July, then took another course same as before at the end of Aug. Obviously not enough right?
Ok now I have some more questions for you all if I havent bored you yet, haha.
Probiotics what are they? over the counter? or by perscription?
I can't eat sweets or carbs why?
I also got copies from my doctor of all the blood test results in cluding the Wb. the first time the doc tested me I was only positece for 2 bands the next time I tested positve in 7 of 10 on the IgG (18 23 39 41 45 58 and 66) and 1 of 3 on the IgM (41) can anyone tell me what that means other than I ahve lyme disease.
Incase any of you live in Central Pa, I live about an hours distance from State College. Just incase you already know of a LLMD in my area.
Sorry this is so long just wanted to get back to you. I DONT feel so alone now. THANK YOU SO MUCH for talking to me. Beth
Posts: 33 | From Clearfield, Pa | Registered: Oct 2007
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quote:Originally posted by ByronSBell 2007: PB8 is also a good pro-biotic that is at alot of health food stores
Hey, Byron. Just a heads up here. I took that worthless PB8 for 5 yrs, only to find out when I switched to Theralac that the PB* was doing NOTHING for my yeast problems.
Had I only KNOWN that!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Probiotics what are they? over the counter? or by perscription? OTC...but buy a GOOD quality one!!! I can't eat sweets or carbs why? It encourages the growth of the yeast! IT feeds yeast and feeds Lyme!
I also got copies from my doctor of all the blood test results in cluding the Wb. the first time the doc tested me I was only positece for 2 bands the next time I tested positve in 7 of 10 on the IgG (18 23 39 41 45 58 and 66) and 1 of 3 on the IgM (41) can anyone tell me what that means other than I ahve lyme disease
In my non-medical opinion....YOU HAVE LYME! Band 39 alone means you definitely have it. Let's see the DUCK deny that!
22: Possibly a variant of outer surface protein C.
23-25: Outer surface protein C (osp C).
28: An outer surface protein.
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.
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.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
58: Heat shock protein.
66: Heat shock protein. This is the second most common borrelia antibody.
73: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis. The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Just to let you know I changed my profile to include where I live since I find that there are some from Pa and may have ideas about LLMD's in the area or state. I would like to find a good doctor that someone knows of then to take a stab in the dark. Thank you Lymetoo, for your reply I now have to watch what I eat. Great. I read an earlier posting today that you wrote containing all the info you posted with the Wb bands. Not really a whole lot of infor there I did read that the kd's are some kind of weight measurement to the cells.?
Anyway my "duck' Doc apt is at two I"ll let you know how it goes. If he asked for me to take some test should I? and what would be resaonable?
Posts: 33 | From Clearfield, Pa | Registered: Oct 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
There is an LLMD in PA ... you might want to post in seeking doctors so someone can PM you his name. I'm sorry, I don't have it.
Some of us travel pretty far to see our LLMD's, so you're fortunate that he's at least in your state, even if he's not down the street.
Personally, I wouldn't waste my time at the ID doctor ... I'd go see an LLMD.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
He will not test you through Igenex....so whatever test he suggests will be pretty worthless. Save your dough.
There are plenty of LLMD's in PA.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Eliza, you sure sound to me like a girl with babesia!!!
But don't worry...if you mention that, your infectious disease duck will look at you suspiciously and ask if you've been reading the internet too much, and assure you that such things are "extremely rare."
I realize you can't cancel on such short notice. But, please go in prepared to nod and say 'Mmm-hmm, mm-hmm," and then basically disregard everything he says, if it's anything like what you're expecting.
1. "You don't have lyme anymore." 2. "Your IgM is negative so your test only means you USED to have it, but now it's gone." 3. "Your symptoms are Post Lyme Syndrome." 4. "Blah blah blah blah. That'll be $120."
Nod and smile and be a good girl, then run away. You haven't read enough yet to have a big argument with him and be able to win and he'll just try and intimidate you and write evil things in your chart.
So stall, or say you need time to talk it over with husband, blah blah blah, or whatever will get you out of there. Take notes!! These are always fun to share!!
We've got some great threads on stupid things said by Infectious Disease Doctors as well as neurologists.
When you find an LLMD, you are going to be SOOOO relieved, and you are going to get better. Don't forget to post in the "Seeking a Doctor" part of Lymenet.
Keep posting -- LymeNet has been a lifeline for most all of us, let me tell you!! Lyme can be very isolating and hard for others to understand but believe me -- WE understand!!! Good luck tomorrow -- come back and let us know how it was "in the trenches" with your duck!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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