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08/08/2009 02:21 PM

diagnosed with lyme about a month ago....questions

ERDJersey
 
Posts: 46
Member

so.....most of the symptoms i was having i sorta dismissed at first. like the headaches (cause i always got headaches), the facial tingling and numbness i thought was a pollen allergy, the arthritis is my left knee i though maybe i just twisted it somehow and couldn't remember, back pain i attributed to sleeping on a sleeper sofa......the thing that made me go to the doctor was that i started peeing like 16 times a day with a very weak stream and not much urine was coming out at a time. so i thought i had a prostate problem. i'm a 33 year old male, btw. so all my blood work came back ok...the elisa was negative but the western blot was positive. ok, great now i know what the problem is. doc prescrobes 10 days of doxy and says that will do it. i start looking it up on the internet and there's a huge controversy over the disease....i think fuckin great. why couldn't i get something easy like chlamydia, lol. so i call the doc and say...you sure 10 days is enough? i argue with him and he gives me another 10 day rx. i think, ok, lets see what happens. a coupla days into the doxy i start getting this weird pressure in my head...no pain just pressure. shitty side effect i figure. by teh end of the 20 days... peeing gets back to normal. eye quits twitching. tingling/numbness goes away. knee feels better. seems like its working. a week after i stop doxy the numbness and tingling starts coming back. the pressure in my head is still there. now a nice new one.....i wake up in the middle of the night and my head is numb (like it fell asleep type numb) and i feel slightly dizzy (scary symton to wake up with, btw). i seem to be bale to avoid the head numbness if i sleep on my side which is good. went to a new doc cuz the first one just tells me he doesn't "think" the lyme can be active anymore and i should go to a neurologist. i tell him i've read it's not uncommon for a second abx course to be needed. maybe a different class fo abx, but he dismisses me. so the new doc ordered a ct scan just to rule anyhting els eout before he prescribes another abx course. i can't afford a llmd, really...since they don't accept insurance. and honestly, i'm not so sure i want to be on years/months worth of abx. and i don't know that i trust them anymore than another doc. so now i feel like this really sucks, lol. hopefully a seconf course of abx will have a positive outcome. i'm not too sure i belive that anymore abx than that would really be effective anyway. i mean for the most part i feel ok, just this damn numbness and tingling crap. i suppose i can live with it if i had to, but i just want to make sure it isn't going to turn into something a hell of alot more serious. any of this sound familiar to you guys? i guess it will. just want someone to talk to about this crap.
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08/08/2009 04:28 PM
toothfairy55
toothfairy55  
Posts: 3856
Senior Member

Hi There,

Im guessing you live in NJ. Welcome to the tick capital~!!!!

Yes it all sounds familiar. Im going to start by having you read something that explains this lovely desease. Its a condensed version but to the point.

Tom Grier, a microbiologist and Lyme disease suffer, and author of The Lyme Disease Survival Manual, has spent years delving into the complex microbiology of the Lyme spirochaete. His work makes disturbing reading as it highlights just how robust, intelligent and well programmed for survival the organism is. For instance:

It is the largest of the spirochetes has a superefficient internal propulsion system, which allows it to swim quickly through blood and tissue

It is covered with a clear gel like coat of glycoproteins, sometimes called the slime layer, or S-layer. This coating acts like a deflector shield, protecting the bacteria from attack by the immune system and antibiotics

It replicates slowly. Bacteria replicate by a process of division and most only take 20 minutes to divide. The division time of B. burgdorferi is 12-24 hours. This is important since most antibiotics can only kill bacteria while they are dividing. A slow doubling time means that B. burgdorferi is less exposed to antibiotics. While most bacteria are killed in 10-14 days by antibiotic treatment, for a Lyme spirochaete to get the same amount of lethal exposure, the antibiotic would have to be present 24 hours a day for one and a half years!

The Lyme spirochaete can remain in the body for years in a state of suspended animation. Since it does not divide during this time, antibiotics will not kill it. A Lyme spirochaete in this state will wait for conditions to be right before releasing itself into the blood stream to cause new symptoms or a relapse of old ones

The Lyme spirochaete appears to be selective and able to enter 'safe' human cells, and hide in the body, evading the immune system and medication. For instance, the spirochaete can enter human fibroblasts (the cells that make scar tissue). In this situation, the bacteria remain protected from the immune system and can thrive without assault. Laboratory tests have shown that, even when these fibroblast cultures were flooded with massive doses of antibiotics, they still yielded live spirochaetes after two weeks.

For details of how to obtain a copy of Grier's book, write to: The Lyme Disease Survival Manual, 902 Grandview Avenue, Duluth, MN 55812-1146, USA.

Now do I think you need to see an LLMD? Yes. Some here do a natural approach that seems to work for them. Can or will you get worse if untreated? Yes. This is a multi systemic disease and today it might be tingling tomorrow might be fatigue so terrible you cant lift your head.

Visit our facts forum for some information. Lots of good stuff there even if you dont choose treatment.(Im hoping you will change your mind about that)

Im glad you were pro active about your health and didnt accept the original docs word as final. Bravo!!! More people need to be that way


08/08/2009 04:43 PM
Kyri
KyriPosts: 121
Member

Crap...yes, I agree, this sure is crappy. I am here, too, mostly so I don't feel so alone. I was diagnosed in June and am on my 2nd round of doxcycline. I have good days on occasion, but mostly wear out quickly, have sore joints, and complete lack of balance. I had the numbness, too. I would get it in my fingers and areas on my arms...one evening my face went numb...that was the scariest feeling. And heart palpitations...which scare me and lead to panic attacks (oh yeah, I already have an anxiety disorder, so Lyme is really doing a job on my sanity!)

Good luck with the doctors and the medication...I fear that when I go back in 2 weeks to be re-tested, I will test false-negative (false given that I still feel just awful)...and the dr. will want to treat the symptoms instead of treating me for the Lyme...I don't understand WHY this disease is such a mystery when it seems so prevalent. The longer the bacteria remains in your body, the worse you can get.

Good luck to you, and if you just feel like venting about it, hit me up. It feels good to know you aren't alone, ya' know?


08/08/2009 05:00 PM
toothfairy55
toothfairy55  
Posts: 3856
Senior Member

Kyri,

Welcome to the wacky world of Lyme.

Im not sure why they would retest you. It doesnt prove anything. Im going to send you the link for the whole explination from Tom G. Its 17 pages long but worth the read. He explains in medical terms and then breaks it down for us laypeople.

http://www.borelioza.org/materialy_lyme/ the_complexities_of_lyme_disease.pdf

For a better understanding of the controversy in Lyme visit the activism forum. Your doctor is obviously not an LLMD?


08/08/2009 05:36 PM
ERDJersey
 
Posts: 46
Member

yeah well the thing that annoyed me most about the first doctor was that when my test came back positive they said..."oh you're just slightly positive, and we caught it early so this 10 days of doxy will do it". i'm trying to figure out...does the western blot have any way of telling how early the disease was caught, or just it just show proof of certain antibodies/proteins?" anyway, if the lyme is causing arthritic and neurological problem,...wouldn't that show it's already disseminated? that doesn't sound like it qualifies as early lyme to me. anyway....i just don't get it. i mean lyme had been known for wuite some time now. and as advanced as medicine is, why haven't they been able to figure this thing out? i mean at least develop a test or method to prove that the damn bacteria is still there or not. now let me ask a point blank question.....have any of you guys/girls been cured by lengthy abx treatments? i know that being on abx for years is not exactly a safe thing, and i'd really be apprehensive about undertaking such a treatment, especially since it doesn't appear to be proven to actually be a cure. i'm not too sure what a rife machine does, although i do plan on researching this stuff. i know i definitelty don't want to be injecting things like hydrogen peroxide into my body. but what i am wondering if there is a test available that can detect whether or not the level of bacteria in your body appears to have gone up or down? also the one llmd that i was able to get through to on the phone that is near my area (central jersey) wasn't even accepting new patients anyway, which seemed odd. but like i said, i don't have the money to be able to go to one of these doctors anyway. it kinda seems shady that they don't seem to accept any insurance, but i guess thats a consequence of the controversy surounding their treatment practices and the medical community. another thing i found odd was that my gums used to bleed when i would brush my teeth for th epast coupla years and since the doxy that has stopped. could that really be a symptom of lyme? i kinda find it doubtful because that would mean i've had it for years and years with almost no symptoms....sorry if i seem so skeptical of everything....i'm not used to being sick and dealing with this kinda stuff. guess i should get used to it huh?

08/08/2009 06:14 PM
Kyri
KyriPosts: 121
Member

Read this user's diary, he talks about dental-related symptoms. Maybe you could contact him directly about his experienc?

http://www.mdjunction.com/diary/all-i-have-left-are-my- wallflowers.

I believe his user name is erut10.

I thought it was "odd" that all of the llmds in my area were "natural" practitioners...or something like that. Regardless, none of them accept insurance, and only one is accepting new patients. I don't have money to throw at this illness, I don't even have a job right now and am such a mental mess I don't know how I will get one. And of course my family thinks Lyme is an inconvenience, but not a devastating llness, so I get little support there. I am not sure why my Dr. wants to re-test me, other than he doesn't know what else to do, and that's "protocol". My general practitioner wasn't comfortable putting me on another round of antibiotics when my symptoms returned, so she referred me to an arthritis specialist. Luckily he put me on another round of antibiotics, but also tried to get me to take some strong anti-inflamatories, which I refused given that once I re-started the antibiotics, most of my joint pain eased up. The way I see it, it doesn't matter what the tests say at this point, all that matters is how I feel. But the disease itself is frustrating enough, without having to go through a boatload of tests just to make a Dr. feel comfortable enough to treat you!

Toothfairy, thanks, I appreciate any information you give me.


08/08/2009 06:28 PM
toothfairy55
toothfairy55  
Posts: 3856
Senior Member

WOW Lots to answer so I will try to get my lyme brain together.

There is no accurate testing. They dont know enough about BB to figure it out yet. There is a test CD57 that some llmd's use as a marker for wellness. There are some post here that go through it.

My WB shows new infection but I know it isnt. I think what happens is I lived with it for so long and at some point it probably went into a dormant state. When I recieved a ton of cortisone(a no no for lymies) it re activated the BB and I just happened to be tested at that time. So again im not convinced its accurate.

Our LLMD (I have 2 children , myself and a granddaughter who have it) did not like the rife. She felt it clogged up the system. Im not sure what she ment by that but I had questioned how does it differentiate between good and bad? I decided against it. She did however endorse the use of an infared suana. I use epsom salts in the bath and sometimes I will add peroxide to the water. Not injested or injected.

Issue of why LLMD's dont take ins? Because they are being sued and losing their license. They are not all protected like the new bill in CT.

Now the gums... My specialty...I am of course the toothfairy. Actually Im a dental hygienist so here goes. The doxy helped clear up inflamation in the gums. I am going to venture to say you maybe havent had a good cleaning in a while and have some tartar formation around and under the gums. This is nothing more than food and bacteria hardened or calcified by your own saliva which has mineral and calcium in it. Once it turns hard toothbrushing and flossing dont remove it. Just me!!!(job security) I love you guys that dont floss!!!

For patients with peridontal disease we give an RX of a form or tetracycline (doxy is in that class of drugs) to help kill the bacteria. Thats why your gums have improved.

There has been proff that BB can be found in the mouth though.

Hope I got it all

Carol

Im in central jersey too


08/08/2009 06:40 PM
toothfairy55
toothfairy55  
Posts: 3856
Senior Member

Hi honey,

Maybe the best way to deal with your doctor is to go to

www.ilads.org and download and print some of their brochures. Hand them to your doctor and see how he reacts. The IDSA guidelines (thats what he is following) state 3-4 weeks of antibiotic. The CT attorney general brought a suit against them and a hearing was just done on July 30. You can actually view the hearing at the IDSA website. Its 8 hours of testimony.It calls for a review of the guidelines and that our LLMD's as well as patients should have some say.

Im sorry you dont have family support. I know how that goes. Now is the time to educate them as well. ILADS is a great source of information. Also Pam weintraubs book "Cure Unknown" recommended reading.


08/08/2009 06:58 PM
ERDJersey
 
Posts: 46
Member

wow...thnx alot for all the info. i guess i'm just gonna take it one step at a time for now. like i siad, i don't necessarily feel too bad physically. i mean this has given me some anxiety, which sucks, but it is what it is. so tues is my head ct scan (hopefully negative) i guess maybe another course of abx might be helpful. funny thing is past coupls days the numbness/tingling has been getting less severe....and the arthritic feeling in my left index finger is slightly better. i mostly believe that i got this crappy disease early this spring when i took my kids to the park and we did some hiking. not long after that i got a terrific sinus infection and it seems to have been all downhill from there. of course when i went to the doc about the sinus infection he said there was a viral one going around and to just let it run its course. obviously i didnt find a tick or get the rash or this might have been easier. could the lyme have caused the sinus infection? who knows but it wasn't long after that that the other symptoms started to pop up. the good news is that other than this lyme i sem to be relatively healthy. again thanks for all this info. one more question...i'm going to ask my new doc to see the western blot results for myself. does a positive igm indicate a recent infection where as the positive igg indicates a longer term infection?

08/08/2009 07:38 PM
toothfairy55
toothfairy55  
Posts: 3856
Senior Member

I wouldnt rely on the testing. A good doctor is going to go on a clinical diagnosis.

IgM is the first antibody produced in response to any invasion .This would suggest new infection.

IgG is the primary immunoglbulin produsedto combat toxins, viruses and bacteria. The body produces IgG several weeks after initial infection

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