posted
Well, Im probably going to ruffle some feathers but I said, if I ever get better I would come back to this website and help a much as I possibly could. Here it goes..I was VERY sick about 4 months I had all the signs of Lyme Disease, LUPUS, RA, even a positive rocky mountain spotted fever, you name it. Took all the tests, was positive on Lyme just 2 bands, my ANA was positive a well as my RF. As soon as my LYME was positive(but not by CDC standards) I sought a LYME Dr in Texas(he has since been shut down) and was soon prescribed Doxy. Thank god for that man, no one else was figuring anything out and I knew I needed to be on a antibiotic, there was something horrible wrong with me. Now, at this time I was also paired with a Rhemy whom did not believe the LYME theory(imagine that)but was very good in what she does as well, one of the best around. Once I got to her she was very perplexed because before June of last year I was as healthy as a horse, now I am going into a LUPUS, RA stage, losing weight like crazy, so she began testing one thing after the other(she had no idea I had seen a LYME Dr. or was on DOXY, I felt embarresed and should not have but my confidence and anxiety was so out of control at this point that I was jut wanting to be cured) and she took strep titers and they were sky high! My body from porisis to sweating to fevers to dizziness was still going on but better because I had been on DOXY for about 2 months at this point. She immediatly started me on Pen. V and I have now been on it for going on 4 month(she said chances are I will be for the rest of my life). Well, what do ya know I have gained 35 pounds, I am sleeping, I have no more shakes, sweats, psorisis has cleared up and so much more has changed. Again, Im not saying you dont have LYME and I thank god for the LYME Dr. that listened that something was going on, Im just saying check your STREP titers and make sure strep isnt the problem. Even when they said my LYME test was positive on 2 bands, I jut could not believe it, I have never been bit by a tick and I live in a area that there has NEVER been one case of LYME and no I do not travel. As for strep, I have three kids and with the enviroment and my immune system being so low this is very understandable. I just promised myself that when I got better I would try and help anyway I could because I can remember when I truly thought I was going to die. How times have changed... I wish you all the best and hope for a recovery, you only hear the aweful stories online and no one comes back once they are well, I made that promise to myself because I found lots of comfort in this website and I am here to tell you, there is life at the end of the tunnel and you are not crazy. I am not 100% but I am 85% and if you would have asked me just 5 months ago if I thought that was possible, I thought I had to be dying of a unfound cancer and things were just going to be this way until they found it but because of a antibiotic my life is tuning around Im getting back to my old self. Im not here to give advise, just wanted to give some comfort to someone in need. Take care~
Posts: 13 | From texas | Registered: Apr 2010
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posted
wow...now you have my mind thinking again...I am always second quessing the doctors...I am about to start IV therapy for lyme but my elisa was negative..I have been bitten twice by ticks but was always tested negative...Iknow something more is wrong with me and the llmd is saying lyme...YOu are giving me something to think about when I finally was settle to fight lyme...UGGH idont know..
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
I know, I am so sorry and I knew when I did this I would make people think and ruffle feathers at the same time. If it wasent for the promise I made to myself I would never had done this, plus that was such a horrible time in my life that I really don't enjoy talking about it but if it might help just one person then thats all I want. Just have your strep titers checked, after all this I do believe they interfer with eachother. Strep in my case was a lot more logical then LYME, and it just so happens once I started the PEN V my life started to change and blood work did as well. Good luck, Im sorry, I went through all this and about went crazy doing it! I did forget to mention, not only did I start the antibiotic, but I completly changed my lifestyle, no more sodas, very little sugar, lots of organic, changed lots of chemicals in my house to natural and stayed on top of my immune system and that is truly the key, you have to get your immune system up and going but I know I would not have got well without the antibiotic. I was sensitive to EVERYTHING at one point and I am way better with all that as well. It all sounds like a crazy person but I was a very active and involved mother of three with a very sucessful business and very healthy and it changed overnight. You can get better the point of my post was not to give advise just to make people think. I never did IV but it sure cant hurt, at least they are doing something, rocephin should kill about anything! I know from reading that some people are for the all natural and I really believe that is vital in your recovery but again there is no doubt I needed to have a antibiotic to get to where I am. Hope this help~
Posts: 13 | From texas | Registered: Apr 2010
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Well, Im probably going to ruffle some feathers but I said, if I ever get better I would come back to this website and help a much as I possibly could.
Here it goes..I was VERY sick about 4 months I had all the signs of Lyme Disease, LUPUS, RA, even a positive rocky mountain spotted fever, you name it.
Took all the tests, was positive on Lyme just 2 bands, my ANA was positive a well as my RF. As soon as my LYME was positive(but not by CDC standards) I sought a LYME Dr in Texas(he has since been shut down) and was soon prescribed Doxy.
Thank god for that man, no one else was figuring anything out and I knew I needed to be on a antibiotic, there was something horrible wrong with me.
Now, at this time I was also paired with a Rhemy whom did not believe the LYME theory(imagine that)but was very good in what she does as well, one of the best around.
Once I got to her she was very perplexed because before June of last year I was as healthy as a horse, now I am going into a LUPUS, RA stage, losing weight like crazy, so she began testing one thing after the other(she had no idea I had seen a LYME Dr.
or was on DOXY, I felt embarresed and should not have but my confidence and anxiety was so out of control at this point that I was jut wanting to be cured) and she took strep titers and they were sky high!
My body from porisis to sweating to fevers to dizziness was still going on but better because I had been on DOXY for about 2 months at this point.
She immediatly started me on Pen. V and I have now been on it for going on 4 month(she said chances are I will be for the rest of my life).
Well, what do ya know I have gained 35 pounds, I am sleeping, I have no more shakes, sweats, psorisis has cleared up and so much more has changed.
Again, Im not saying you dont have LYME and I thank god for the LYME Dr. that listened that something was going on, Im just saying check your STREP titers and make sure strep isnt the problem.
Even when they said my LYME test was positive on 2 bands, I jut could not believe it, I have never been bit by a tick and I live in a area that there has NEVER been one case of LYME and no I do not travel.
As for strep, I have three kids and with the enviroment and my immune system being so low this is very understandable. I just promised myself that when I got better I would try and help anyway I could because I can remember when I truly thought I was going to die.
How times have changed... I wish you all the best and hope for a recovery, you only hear the aweful stories online and no one comes back once they are well, I made that promise to myself because I found lots of comfort in this website and I am here to tell you, there is life at the end of the tunnel and you are not crazy.
I am not 100% but I am 85% and if you would have asked me just 5 months ago if I thought that was possible, I thought I had to be dying of a unfound cancer and things were just going to be
this way until they found it but because of a antibiotic my life is tuning around Im getting back to my old self. Im not here to give advise, just wanted to give some comfort to someone in need. Take care~ [/QB][/QUOTE]
**edited with space so others can read it more easily**
posted
Glad you are improving on your medications!! Many LLMD's ARE finding the connection between strep and Lyme. Sometimes it's a back and forth thing. Keep that in mind in case you remain ill after beating the strep.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Pen V is penicillin...hmmm....also used for Lyme. so to me, monkee is still being treated for lyme.
Monkee, I'm so glad it is working for you and you are feeling better. May your progress continue to be positive.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Pen V is useless for Lyme so doubtful.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
My son had a positive strep test when he tested CDC positive for Lyme. I have always questioned this... especially with all the brain issues he has had -- and I also questioned possible PANDAS since he had a friend diagnosed with PANDAS (strep infection)
His LLMD agrees that the current treatment would be kicking strep or PANDAS too... and I trust her.
There is no question that my son is Lyme positive... and that strep is somehow mixed in there.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Last week my LLMD received the blood strep test it was high hi called me and said it can be the strep is my problem but the treating is the same because is chronic difficult to kill.
And he send me an order to repeat the test after 2 months . Have to be off antibiotics for at lest 12 days.
Also my son has the strep test sky high.He never had tick attached or been out of the city asphalt that I know for sure.
I had ticks 3 of them and started treatment when the first symptom appeared.And on treatment today.
But I think to most of us other infections are playing bigger role than the lyme.
Yes to some of us as with me lyme maybe was opening the door for the other stuff to act.
But people without tick bite should consider other infections to more then lyme.
The bad think to diagnose them is same ore even harder than lyme.
Posts: 482 | From Nebraska | Registered: Feb 2010
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posted
IGM result, positive on 41,58, 83-93. I know it not what people want to hear but I do not believe that my illness was caused by LYME disease. Trust me I have spent thousands of dollars and endless hours studying this subject as well as my body. Who knows? Your right the antibiotics helped me no doubt about it but I did not see my strep titers go down until I started the Pen. V. Even when I was told you have to have LYME with these positives I was so glad to start a antibiotic I just went with the theory but the truth is I never believed the LYME theory, it just did not make sense to me. These families that have multiple LYME patients need to be tested for STREP. Do I believe in LYME, sure I do, but do I think the test cross reacts with a different bacteria, theres no question about it. Again, I did not post to be told that I indeed must have LYME(because your not going to change my mind), I expected this and I did not post to change anyones mind or diagnose them, I just wanted to tell my story to those that are scratching their heads daily asking how can I possibly have LYME disease? There might be another explination..I don't claim that my Rheumy is 100% right either, I am going off how my body has reacted as well as my blood work then and now, I have been my best Dr. through this whole ordeal and it has been trial and error and I was told I had everything and I go off blood work and I had to see numbers, reasons, and results before I ever came back on this website to post.
Posts: 13 | From texas | Registered: Apr 2010
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posted
IGM result, positive on 41,58, 83-93. I know it not what people want to hear but I do not believe that my illness was caused by LYME disease. Trust me I have spent thousands of dollars and endless hours studying this subject as well as my body. Who knows? Your right the antibiotics helped me no doubt about it but I did not see my strep titers go down until I started the Pen. V. Even when I was told you have to have LYME with these positives I was so glad to start a antibiotic I just went with the theory but the truth is I never believed the LYME theory, it just did not make sense to me. These families that have multiple LYME patients need to be tested for STREP. Do I believe in LYME, sure I do, but do I think the test cross reacts with a different bacteria, theres no question about it. Again, I did not post to be told that I indeed must have LYME(because your not going to change my mind), I expected this and I did not post to change anyones mind or diagnose them, I just wanted to tell my story to those that are scratching their heads daily asking how can I possibly have LYME disease? There might be another explination..I don't claim that my Rheumy is 100% right either, I am going off how my body has reacted as well as my blood work then and now, I have been my best Dr. through this whole ordeal and it has been trial and error and I was told I had everything and I go off blood work and I had to see numbers, reasons, and results before I ever came back on this website to post.
Posts: 13 | From texas | Registered: Apr 2010
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posted
monkee - thanks. Wonder you could give a list of your symptoms from (supposedly) strep. I am definitely going to look into this matter.
Posts: 822 | From midwest | Registered: Apr 2009
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posted
I believe that Strep is definitely part of your disease protocol, and I'm glad you found treatment that is right for you at this point in time. I urge you to be careful with strep and keep treating it as directed - you are very lucky that you don't have a resistant form if it is being treated successfully with PenVK.
However, a positive on band 93 is indicative of Lyme - it is one of the bands that have few if any known cross-reacting pathogens. It measures an immune reaction to a specific "part" of the Lyme spirochete, "part" that isn't found even in other spirochetes, and is not present (to my knowledge) in Strep's family.
The fact it is an IgM positive suggests there is recent (if not active) exposure. (There is some debate over IgG - some believe it to be as valuable as IgM at diagnosing current infection in tick-borne diseases. Others feel it can only prove that you were exposed at one time). That's a pretty strong indicator that Lyme is a part of your disease process.
Keep treating strep, but if you ever start to get sicker, don't forget that Lyme and other tick-borne infections could be a likely culprit, especially with band 41, 83, and 93. Thank you for sharing your experiences.
Posts: 691 | From East coast, USA | Registered: Jun 2006
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
THere is a sewer of pathogens in ticks. If you have lyme as well as strep (and who knows what else) the lyme will suppress your immune system making it harder to get over everything else you are infected with.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Thank you for sharing this. I am glad you are feeling better and I am definitely bringing this up with my LLMD when I see him. ONe of the first things the Lyme literate doc I first saw said to be is your strep titers are crazy high he put me on Doxy but only Doxy I left him to find a more aggresive LLMD no you have me wondering. Thanks.
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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posted
monkee.... PLEASE put space between every few lines if you want people to be able to read what you write. Many here cannot read large blocks of print.
Thank you!
(to edit.. look for the pencil/pad icon next to the date)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
not trying to convince you.. just putting the facts out there...
"Band 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.
Band 93: The DNA or genetic material of Borrelia burgdorferi."
posted
I think people questioned your credibility when you said there is no Lyme disease in Texas. Which is just outright false. So that may make people wonder about how much you really know... NOT trying to start anything! Just explaining how some might interpret what you wrote.
Unfortunately there is no way to rule out Lyme disease once the tests show positive--there are a few bands that CANNOT cross react--because even if someone gets better, there's alwyas the horrible scenario that the bacteria have just been forced into hiding (cyst form, which doesn't cause symptoms). I hope you'll remember this in the future, in case you start experiencing more left-sided symptoms and things that are associated with Lyme, because if that starts to happen, you won't want to waste time trying to treat Strep if the Strep is already under control.
I've no doubt the strep was a major part of your ill health! Just yesterday I posted on here telling how Strep. pneumoniae can cause systemic disease, because it does! But again, please keep in mind that you can still have the Lyme bacteria in you, in the event that treatment for Strep starts to fail. Good for you, for listening to your body and going with whatever treatments improve your health
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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posted
I have sky high levels of strep myself. My DNase level was 1360 at it's highest & 680 at it's lowest. For those who aren't familiar...normal is below 85 for adults.
My LLMD says that she sees chronic strep with many of her Lyme patients (I tested CDC positive for Lyme twice).
Thank you for sharing this with us. Currently we feel that the strep is actually my biggest obstacle. I have been in treatment for almost 2 years and this strep just doesn't want to go away.
I would like to try the Penicillin as well. Maybe I will convince her to give that a try if this current abx doesn't bring down my strep any further.
She says that in her experience the penicillin hasn't been effective in her patients for the chronic strep.
Anyhow...I really appreciate you sharing. It makes me hopeful that once we get this strep cleared I will actually start feeling better.
OH and why is it that your doctor thought you would need to be on the penicillin for the rest of your life? That is a bit discouraging to hear. I really would be interested to know the reason for that.
Thanks for sharing!
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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posted
OH and to the person that asked about symptoms.
My symptoms aren't typical of strep. I don't have sore throats etc. Had no clue I had strep.
The symptoms seem to overlap with those of Lyme. Horrible fatigue, General overall ill feeling, minor joint pain, headaches, heart palpitations, chest pains, had some derealization several years back, nausea, dizziness, post exhertional malaise, etc...the list goes on and on. All the typical stuff you see here.
Although...I feel that strep isn't my only issue. I do believe I have lyme etc. As you can see from my signature I have tested positive for several TBD's.
So I think that is the reason why my symptoms overlap. It is hard to tell what is causing what symptoms.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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posted
To Pam..I went off of the Pen V to see what would happen and my WBC as well as my strep titers shot back up, if I am on the PEN V it stays within the normal range? What she said is that she would like to see me on it for a year because of strep is basically everywhere and we will play with it then, and if I have a chronic
strep thing going on then I will go to a low
dose there after. Not exactly what I wanted to
hear but I feel so much better Im not
complaining right now. To little olive..I never
said there is no LYME in Texas, what I said is
not in my area which means there is not ONE
reported case of LYME disease in my hometown of
9000. That is a FACT. I am not disputing that
people have LYME, I am simply telling my story.
Posts: 13 | From texas | Registered: Apr 2010
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My symptoms started at age 10 with severe leg pain.. I actually had scarlet fever prior to this...I have read that this is very related to strep. I am recently realizing that this scarlet fever may have triggered some of my symptoms.
I wonder if I have chronic strep as well as Lyme? The reason I asked about symptoms was because I don't have a sore throat.
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
Renny..I never had a sore throat, I had irritation like allergies but never what you
would think strep would be. I did run a constant low grade fever for about 4 months but
once I started the antibiotics the fever went. I had about every symptom that LYME or LUPUS
patients have but I never had a horrible sore throat(I cant even remember everything because
it was such odd symptoms, that I really thought I must be going crazy). I did have lots of strange burning in my throat, nose, and bottom
of my feet that was really strange that has also disappeared with the antibiotic? Hope this helps.
Posts: 13 | From texas | Registered: Apr 2010
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posted
Thanks Monkee! That sucks that your levels shot back up once you stopped the antibiotic. BUT I guess I wouldn't care about taking the med long term either if it I was finally feeling good. That is so great!
Hopefully after a year you will be able to come off it or at least go to a low dose like your doc was saying.
Thank you again for posting this! It gives me hope that once my strep levels are down that I will start feeling better.
Take Care!
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
monkee,
That's awesome you're taking your life into your own hands and doing the thorough research.
I wish more people in this country would take their health seriously.
May I ask... why have you ruled out the possibility that you have BOTH Lyme and Strep infection?
I think everyone on this board is just a little fearful that you might be jumping the gun on trying to rule out Lyme.
I'm from Texas as well. Small town in WEST TEXAS (dryest side of town) and when I said the word Lyme the only response I got was, "What's that?"
Just because there have been no reported cases doesn't mean squat.
Most experts on this disease believe the number to be in the millions!
If you get your case report numbers from the CDC - please take with a grain of salt.
Good luck to you
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
More power to you!I hope all goes well consider yourself the LUCKY one!Thanks for sharing!
Posts: 72 | From illinois/wisconsin | Registered: Sep 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I tested positive for systemic strep at my first LLMD visit. This was an added bonus to my LD.
I think only a person with a compromised immune system from LD or other illnesses would keep a chronic strep infection.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I'm afraid if I call my primary and tell him I now want my Strep teeters tested after insisting I had co-infection testing done today he's gonna have me locked up in a looney bin. Whats making me really rethink everything is that when I went to my gyno for a urinary tract infection that became a kidney and then I had severe yeast due to anti-biotics, she informed me that I had a Strep infection in my uterus.
I took the antibiotics but never got retested. I remember her explaining Strep to me and that it can actually be carried on your skin, that some people are carriers and that it can show up almost anywhere in your body. I think I'll just go back to her to request a full spectrum of the strep testing.
I definately came up positive for Lymes too though. I'm doing the Rocephin IV therapy and I'm still shrinking..., even though I'm pregnant. Come to think of it I just posted on here that I got pregnant after starting Lymes treatment .., I had two weeks prior been treated for my Strep infection as well though. Anyone else starting to feel like everything is wrong ??? There is no right answer. I'm beside myself with confusion.
Posts: 20 | From harwich ma 02645 | Registered: Oct 2010
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
coley,
Run from your primary.. NOW NOW NOW
Get with a LLMD and be pre-cautious of your newborn. There are things you and your family may need to do to ensure the child doesn't live a disease-riddled life.
My LLMD was a former Gyno and he would tell Lyme patients to wait at least a year after starting abx's - to become pregnant
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
I do agree sutherngrl..my immune system was completly shot due to MOLD but thats a whole
other ballgame. I owned a boutique that was in a 100 year old building and when I first started
getting really dizzy and burning thoughout my body I had a customer mention it and I thought
it was ridiculous, the sicker I got, I decided to have it tested and I had 6 different molds
and 3 of them being the most dangerous. We moved out of the store and by this time it I was too
sick to work anymore and this is when I think I developed strep that I let go and all the fevers, and odd symptoms
started. Of course I had no idea that I had strep or ever did until the Rhemy took a
AntiStrep O blood test and it came back sky high as well as my WBC, my CBC was completly messed
up until the last 3 months. So I do agree that my immune system played a huge role in what
happened to me. I will say that I was never a sick kid or a sick adult, very healthy, and very
active and it was taken away from me overnight. I since and continue to build my immune system
as well take the antibiotic and I have just started my business back up, its been a
blessing. Reading some of these replys, I know Im not going to convince some of you on this
board any different than LYME and thats not my intension. I dont want to fight a whole board of
people that have LYME, thats not why I did this but they deserve to hear how I suffered and how
I've survived and maybe it will help just one person to push. This is the kind of information
I begged for when I was so sick, I wanted knowlege in everything and to hear peoples experiences.
I can just come back and tell you I truly thought I was dying and that I would never get better. I want people to know you can get better and dont give up!
Posts: 13 | From texas | Registered: Apr 2010
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quote:Originally posted by coley77: I'm doing the Rocephin IV therapy and I'm still shrinking..., even though I'm pregnant. Come to think of it I just posted on here that I got pregnant after starting Lyme treatment .., I had two weeks prior been treated for my Strep infection as well though. Anyone else starting to feel like everything is wrong ??? There is no right answer. I'm beside myself with confusion.
I do so hope you are on amoxicillin to protect your BABY!!!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Get a ASO test, this is a simple blood test that will test your strep levels and will give you an
idea of whats happening. It is your body, I was so ashamed and embarresed to ask any questions,
my primary Dr. is acually a very good friend of ours and I was to embarresed to ask for anything until everything started going out of control and then I started getting positives with ANA's,
RF, ASO and by this time I was very sick and at a rheumatologist and people were seeming a
little bit more interested. I think being sick makes us very vunerable and ashamed not to
mention feel a bit crazy but now that I feel better I look at it completly different. It is
your body and your money and you deserve to fight until you find a solution, if your Dr blows you off or makes you feel crazy.. move on!
Posts: 13 | From texas | Registered: Apr 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Positive 41, 58, 83-93, positive Rocky Mountain Spotted Fever, Symptom Profile. High Mold titers of a variety of species.
You were bitten by a tick. The fact that a co-infection (RMSF) was present substantially increases the probability that those IGM bands aren't syphillis, or dental spirochettal infection.
The coincidence would be enormous to have those bands and a positive RMSF, Strep, RA, and other inflammatory indicators.
The bottom-line, you're feeling better, so perhaps the Strep or another infection which is more susceptible to Penicillin is instigating the immune systems response and allowing these other infections a foothold. (For example, post-streptoccocus-pneumonia can lead to a Rheumatic Fever profile, compatible with systemic myalgias, and joint inflammation). This is an antibody mediated response though, not an infectious one.
Doxycycline would treat the Rocky Moutain Spotted Fever, which is relatively easy to resolve. If your test for RMSF is no longer IGM positive, then I'd say it was treated effectively.
That's one of the big tools I recommend to people who test negative for Lyme by traditional CDC laboratory standards. The tests for Ehrlichia and Rocky Moutain Spotted Fever are much more sensitive in contrast, so I often tell people to test for those, and if they show up positive, it recinforces the likelyhood that a band 41, plus anything else is Lyme.
There is no known vector in the medical literature to carry Rocky Mountain Spotted Fever other than ticks. (Based on my review)
Glad you're feeling better, but I'd remain vigilant before casting your Lyme-shackles off the ship. Further testing would be wise to see if the pattern of the Western Blot changes, or if other laboratories draw different conclusions, such as negative results or additional bands, especially on the IGG (since they were not present thus-far). If IGG bands show up on the Lyme WB as you treat, that would solidify the diagnosis, assuming you're interested in really closing the case.
For other patients interested, I do think people should check the Strep Titer. The reason being that Strep responds to antibiotics which affect gram positive bacteria. Lyme Disease is gram-negative and thus the antibiotic profiles are at odds, especially if you see a Lyme specialist who only does mono-therapies which may miss treating Strep.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I had a highly positive Strep test along with my positive Lyme, Bart, RMSF and Ehrlichia. There is no doubt that I have Lyme and co-infections ( I did have a bite and rash). The fact that I also have Strep doesn't mean that my Lyme tests are False positive.
Glad you are feeling better. Strep is just as difficult to treat as Lyme in many cases.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Well, thank you to everyone that responded to my post and thank you to those that listened with
open ears. I will say thank you to this board and its wonderful people, I rarely posted but I
read over post after post when looking for a solution and it was a great help and comfort in
knowing their were other people in my shoes. I just promised myself I would come back if I were
to ever survive whatever was happening to me and post my recovery story because I didn't see
enough of them. I did what I promised and I can move on now. I wish everyone a happy and
healthy 2011 and much success in getting well. You are welcome to PM me if you have any further
questions but I am logging off from Lymenet with hopes I dont need you again(I say that in a nice way, I learned alot from this board). Take care~
Posts: 13 | From texas | Registered: Apr 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You also mention mold. Dr. K, an excellent Lyme doctor, has said that all chronic Lyme patients have an underlying reason they get sick - mold or KPU.
Your test shows you were exposed to Lyme (testing cannot show Lyme Disease, only exposure).
Now you're getting better treating strep (YAY!).
I'd bet you're also getting better because your immune system is no longer distressed from mold, it's better able to fight any infections you have, like the body is supposed to be able to do.
Keep on the right track and keep feeling better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I got Lyme. Tetracycline did nothing for it. Penicillin did.
I relapsed. Doxy helped some, but again Penicillin did the trick.
I relapsed again when meds were stopped. IV Rocephin didn't work at all. IV penicillin did wonders.
I got bit again.. I got Lyme again and many many coinfections.
Doxy worked on some symptoms very well. Penicillin worked well on other symptoms.
Minocycline didn't work at all, but Cipro did. Biaxin did nothing. Zithro helped some. Mepron worked quite well also.
The point- penicillin was used in the days before Doxy became the drug of choice for some people with Lyme. Some patients do better with some antibiotics, others don't.
Do what makes you feel good at the time IF you are lucky enough to be able to find the right one for you.
Glad you are feeling better!
PS. Even Bumsteere (and others) found that penicillin worked well on Lyme years ago.
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Yes, the connection between strep and Lyme must be significant. My daughter also tested positive for strep at the same time she tested positive on her western blot.
In regards to bands 83-93 being a strong indicator of lyme. I spoke with Dr. H. at Igenex and he told me that I shouldn't consider those bands as strong indicators. He told me band 25 was more indicative of Lyme than 83-93.
Well that just got me more confused after everything I've been hearing.
quote:Originally posted by renny1985: Those with chronic strep what are your symptoms?
I am said to have very high strep tieter (sp?) my symptoms are
Dizziness fullness in head PVCS Fast heart rate muscle twitches eye symptoms, (floaters, dry eye, blurry vision) ears ringing, feeling clogged Anxiety Anxiety anxiety some GI issues Irregular menses fatigue Feeling like I'm drunk
Etc etc.
I can't imagine these are all from strep it must be a combo of LD, Bart, Babs, and strep although I dont think Biaxin or Plaquenil treat strep so I need to talk to my lLMD about that.
Thanks.
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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