posted
I've been 'snooping' around on this site for about a week now and I decided it was time to join the discussions. I'm 20, from WI and was diagnosed with lyme a month ago. As far as I know the only tick bite I've ever received was 7 years ago, from a wood tick with no 'bulls-eye' ring rash or any symptoms of the flu....a couple years ago I started to feel tired all the time, started to get real irritated with people (not just your normal teenage 'fight with your parents' type of irritation)but never thought much of it. More recently I've experienced memory loss and a feeling of numbness and fatigue in my throat and tongue every time i spoke. I ignored the numbness feeling for a year because a chiropractor i was seeing told me I just had weak muscles in my neck that was contributing to the numbness. I thought that was odd but whatever. Then, I started to gag when I talked. So i thought maybe it was time to see a dr. Did that, got scanned for MS, all kinds of blood work and got sent to a neurologist for further eval. Neurologist said everything came back normal and he could do nothing for me. Well, I wasnt real happy with that so he agreed to do some more blood work and did a lyme test just for the heck of it...Lyme titer and WB came back positive right away. He sent me to an ID DR who immediately put me on 30 days IV Rocephin.
I'm on my 27th day of R and only feel SLIGHTLY better, after having gone through a pretty rough Herx reaction, 7 days straight of diarrhea and bloody stool and now an ulcer-like reaction at my picc site.
Anyone else have symptoms like mine?? I feel like i'm on the fence...my Tx seems to be a bit much for my symptoms but then again the Dr said the bacteria was in my CNS already so he's treating it aggressively..but I dont know what to do if this doesnt work.
Sorry for my ridiculously long post of my sobb story but I figure you guys are the closest thing I have to anyone who understands what its like...any advice would be SUPER!
Posts: 11 | From Midwest | Registered: Apr 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Welcome to Lymenet!
Sorry you're going through so much. It's tough.
Your ID doctor is correct that it being in the CNS means you need aggressive treatment. IMO. However, if it is true that it's in your CNS, you are going to need much more than 30 days.
I treated for a couple years to get better. You might need to find an LLMD near you if your ID doctor won't treat you adequately. You can find one by posting here in seeking a doctor.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Do you think its possible that its really in my CNS, I mean is that fairly common among those who experiences symptoms? I've read that people have to have spinal's to figure that out. I never had one (and hope to the dear lord i never do)
I'm just trying to figure out where I stand in the spectrum of things because many of those out there have symptoms i feel are much worse then mine...am I just in denial??
Posts: 11 | From Midwest | Registered: Apr 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
"LYME BORRELIOSIS: GENERAL INFORMATION After a tick bite, Bb undergoes rapid hematogenous dissemination, and for example, can be found within the central nervous system as soon as twelve hours after entering the bloodstream." (p. 12)
Lyme (Bb) is in the CNS of every person who has lyme disease.
I suggest you read the Burrascano lyme treatment guidelines shown at the link above to get an education on the disease you have. The more you know, the better medical decisions you will be able to make for yourself. Do not be a passive patient, waiting for the doctor to work his magic and you are all better. It rarely works that way.
I had lyme and 2 coinfections undiagnosed for at least 10 years. My doc used only oral meds and got me well. It has been 5 years since I completed my treatment and I am still symptom-free.
Most people with lyme do not need IV treatment. Read it in Burrascano. They need high-dose combination antibiotic therapy (not just one antibiotic alone), and they need tested and treated for all lyme coinfections.
That's how my doc treated me and it worked. Plus the supplements Burrascano recommends, plus diet and the Burrascano exercise program.
That is the 4-pronged Burrascano approach to this disease. It has worked for all my friends also.
And, Burrascano basically says that spinal taps are useless, so don't agree to one. (See top of p. 8 of the document.) I had one before I knew better.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
I'm so sorry that you have this wretched disease.
Yes, it is common for lyme to get into your CNS and cause the symptoms you describe.
I am going to tell you something that will be really hard to hear, so grab something comforting.
99% of MDs do not understand lyme disease, will not treat you with abx long-term, and don't realize that you might also have gotten other nasty infections from a tick bite.
This is why its very important to go see a "Lyme Literate MD", or LLMD for short. There are so few of them, you might have to travel up to 8 hours to teh closest one.
As stated above, you can go back to teh main page of Lyment and ask for LLMDs in that part of the country.
and click on the little icon in the upper right hand of the page that says "doctor referral". You have to register with the site first. Also, recognize that not all the people on the doctor referal are actually doctors
Its really tough, because there are probably two dozen really good LLMDs in the whole country. Given that your symptoms are so severe, you really need a good doc.
Also, most of these doctors are exspensive, and do not take insurance.
I do not live in that part of the country, so I don't know who is good there. I think there is an excellent LLMD in Minnasota (I know, thats not very close). You are going to need some help, can your parents help you at all?
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Buckle up, Notz, you are in for a ride. Yes, you have Lyme in your CNS. (Sorry! We all do.) You likely have other tick-borne infections (TBIs) as well.
You CAN recover your health, but you must become proactive. Posting here is an excellent start.
Find an LLMD. LL stands for Lyme Literate. ID (Infectious Disease) doctors do not know enough about Lyme to get you completely well.
Get an ILADS trained LLMD. (Or LLND-naturopathic doctor) Don't be afraid to ask about training. The Dr. B guidelines are the gold standard (but not the 'standard of care' - that's a medical term) for Lyme disease.
Get the book "Cure Unknown. Inside the Lyme Epidemic" by Pamela Weintraub. It's not a medical book - more like a medical thriller. It will tell you all about Lyme in the medical system.
Get the DVD "Under Our Skin." It's an excellent introduction to all things Lyme.
Good luck and keep posting. We're a pretty cool group.
. . . Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.
In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.
For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells.
The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%). An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum.
The proposed index of 1.3 would be expected to have even worse sensitivity. . . .
This thread explains why a LP is such a poor test. Plus, they can be very painful and you could have a tremendous migraine for weeks afterward needed someone to care for you, at least for many tasks.
And, they are expensive. Even if you do not pay out of pocket, someone is making money from a test that does not work to dx lyme.
AND - even if they found lyme most treatment will go by IDSA standards and you'd get 9 days' worth or 3-4 weeks max of one medicine alone.
Not enough. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Oral doxy took 6-8 wks but helped with cns,peripheral nervous,muscle symptoms. When doxy,rocephin/ceftin or whatever stop working then go on to coinfections. Most folks do the rocephin for 30 days or have picc line problem etc and go on to something else. Some have improved and some have not. What I do not like about that is you can not stick with it long enough to see it through to the stage where it no longer helps assuming it did help at all to begin with. Another concern is the cystic form of Lyme/Bb e.g. you need to have combination therapy to get spiral and cystic Borrelia. Flagyl and zithro, or zithro and bactrim seem to pack more punch than doxy alone. I tried adding doxy to zith,bactrim and that combo worked better (slightly) than zith,bactrim alone. More and more and more research is showing that combinations are powerful way to get IV power in oral format. Of course there is an art to taking this many pills and keeping breakfast down etc. but that is another topic. . .
Beachinit.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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posted
See my whole problem is that I'm very allergic to penicillin so the Dr's are worried about putting me on too many antibiotics for fear I may have a severe reaction again. I have a picc line and the nurse today actually wanted to take it out because the site is reacting to a chlorhexidine patch thats on the tegaderm. So its looking like my options as far as abx goes are narrowing
Posts: 11 | From Midwest | Registered: Apr 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Most doctors are not trained in combining multiple antibiotics at high doses. They are right to be concerned - an allergic reaction to antibiotics is a big deal.
A good LLMD will work around your penicillin allergy. I'm sure you can take other classes of antibiotics, and most LLMDs work with antimicrobial herbs, as well.
Again, your options with an ID doc will be limited. Start to research LLMDs in your area, and see if you can get an appointment.
posted
Notz3641, With exception to the bicillin and rocephin folks granted I have done vy well without either med or group of meds. I expect you will do the same. Think Doxy or mino, then zith or clarithro with bactrim or flagyl. I have done very well with this and am now on to Babesia (artemisinin with other meds already noted herein). Do not worry. Take it step by step. Fill your cupboard gradually with detox and supplements. Force your self to work up to 1 hour of non-aerobic exercise (dumbells and calisthenics works for me). Work mightily on sleep and sleep hygiene , toxin and alcohol avoidance etc. You can start many of these things right now and you will be in better shape when you start the antibiotic regimen lasting many months in many cases.
Better days are ahead,
Beachinit
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I pray they have you on something like Nystatin to
prevent yeast and a probiotic to keep the bowels
refreshed. Without these you may be in for a
rougher ride. I agree with finding a LLMD to treat asap.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
They did put me on a weeks worth of Flagyl-helped a little but not a lot. I'm taking Solgar's multi billion dofillis for a probiotic and trying to eat yogurt. So far I'm OK...not 100% normal but its not too bad anymore.
Posts: 11 | From Midwest | Registered: Apr 2010
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posted
They did put me on a weeks worth of Flagyl-helped a little but not a lot. I'm taking Solgar's multi billion dofillis for a probiotic and trying to eat yogurt. So far I'm OK...not 100% normal but its not too bad anymore.
Posts: 11 | From Midwest | Registered: Apr 2010
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
I'm glad you are better! I hope you are one of the ones that stays well
For some of us, we get better, then a month or so after the abx, symptoms can come back, strong.
This is why you need to get an LLMD, in case that happens. Because no infectious disease doctor will treat you again with abx (its agasint their guidelines, they say there is no evidance that re-treatment is effective, but that is not true, they choose to ignore studies that don't fit their beliefs. Also, to be fair, there were some studies done that did not show re-treatment was effective, but those studies had so many flaws, and the treating ID docs just don't know that)
LLMDs know all about abx and reactions to them. And there are a lot of different abx now, so if one doesn't work, you can try another.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
Notz, If that irritation with people is really anger or rage, that is a symptom of Bartonella. A good LLMD will look at your body for obvious signs of this co-infection.
Sorry this is happening to you. Get to a LLMD asap.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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