posted
2... almost 3 yrs ago I was misdiagnosed with shingles and given Valtrex and prednisone to treat what I never had.
After my doctor realized how much my health was declining and actually listened to my other symptoms he tested for lymes. Come to find out that prednisone hides lymes. I came back positive for lymes but then when they did a follow up western blot I came back negative, was refered to a neurologist and told I had MS.
Then 4 months ago I became extreamly ill after running myself in to the ground between working 50 hrs a week, moving and other stressful situations. I lost 20 lbs before getting to my new primary because of insurance issues. I had spent several days in the hospital with a urinary tract infection that turned in to a kidney infection. When they did a MRI to look for kidney stones they found massive tumors on my liver and other mis. unexplainable things on my MRI and CAT.
Turned out liver issue was birth defect that was growing but I continued to lose more weight, couldnt get off the couch, had cold sweats, dizziness, nausia and the list goes on and on. My new doctor tested me for Lymes again on the western blot and I came back positive. Now I'm on Rocephin IV, still losing weight, tired, vomiting and so on. Can't help but feel like if 3 years ago when I first became ill with this I was treated that I wouldnt be on this web site now. Doc should of know about the prednisone effects.
so now I want to know .., do I have a case ???
Posts: 20 | From harwich ma 02645 | Registered: Oct 2010
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posted
i am sorry for your situation but most of us have been down the same road.
If you took a survey of the people on here you would probably find a good percentage were given steroids at some point before diagnosis or were misdiagnosed multiple times.
Before my diagnosis in 09 I was given 5 different courses of steroids including IV for sinus infection (not) to intractable migraine (not) which they hospitalized me for and pumped me full of awful IV meds.......I now have huge bills for that but have no case because they felt at the time they were doing the right thing.
As I say the more you read the more you will see most of us have seen multiple Dr's prior to diagnosis.
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
Steroids they hand out like candy, antibiotics are "dangerous."
Tumors on your liver are a birth defect???? Don't understand this. Bartonella can cause things that resemble tumors on organs. You should check into bartonella, which is a tickborne disease sometimes. A lot of lymies have it.
Posts: 8430 | From Not available | Registered: Oct 2000
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I think your energy is better focused on your recovery... it is difficult enough without putting negative energy on blame and legal battles.
Make sure your current doc is following the ILADS guidelines and will keep you on the IV rocephin until 6-8 weeks after your symptoms have cleared.
COURSE DURING THERAPY
As the spirochete has a very long generation time (12 to 24 hours in vitro and possibly much longer in living systems) and may have periods of dormancy, during which time antibiotics will not kill the organism, treatment has to be continued for a long period of time to eradicate all the active symptoms and prevent a relapse, especially in late infections.
If treatment is discontinued before all symptoms of active infection have cleared, the patient will remain ill and possibly relapse further. In general, early (Lyme borreliosis) LB is treated for four to six weeks, and late LB usually requires a minimum of four to six months of continuous treatment. All patients respond differently and therapy must be individualized. It is not uncommon for a patient who has been ill for many years to require open ended treatment regimens; indeed, some patients will require ongoing maintenance therapy for years to remain well.
Several days after the onset of appropriate antibiotic therapy, symptoms often flare due to lysis of the spirochetes with release of increased amount of antigenic material and possibly bacterial toxins. This is referred to as a Jarisch Herxheimer-like reaction. Because it takes 48 to 72 hours of therapy to initiate bacterial killing, the Herxheimer reaction is therefore delayed. This is unlike syphilis, in which these reactions can occur within hours.
It has been observed that symptoms will flare in cycles every four weeks. It is thought that this reflects the organism�s cell cycle, with the growth phase occurring once per month (intermittent growth is common in Borrelia species). As antibiotics will only kill bacteria during their growth phase, therapy is designed to bracket at least one whole generation cycle. This is why the minimum treatment duration should be at least four weeks.
If the antibiotics are working, over time these flares will lessen in severity and duration. The very occurrence of ongoing monthly cycles indicates that living organisms are still present and that antibiotics should be continued.
With treatment, these monthly symptom flares are exaggerated and presumably represent recurrent Herxheimer-like reactions as Bb enters its vulnerable growth phase and then are lysed. For unknown reasons, the worst occurs at the fourth week of treatment. Observation suggest that the more severe this reaction, the higher the germ load, and the more ill the patient. In those with long-standing highly symptomatic disease who are on I.V. therapy, the week-four flare can be very severe, similar to a serum sickness reaction, and be associated with transient leucopenia and/or elevations in liver enzymes. If this happens, decrease the dose temporarily, or interrupt treatment for several days, then resume with a lower dose. If you are able to continue or resume therapy, then patients continue to improve. Those whose treatment is stopped and not restarted at this point usually will need retreatment in the future due to ongoing or recurrent symptoms because the infection was not eradicated. Patients on I.V. therapy who have a strong reaction at the fourth week will need to continue parenteral antibiotics for several months, for when this monthly reaction finally lessens in severity, then oral or IM medications can be substituted. Indeed, it is just this observation that guides the clinician in determining the endpoint of I.V. treatment. In general, I.V. therapy is given until there is a clear positive response, and then treatment is changed to IM or po until free of signs of active infection for 4 to 8 weeks.
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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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I am sorry to hear that you have had to go through this. It's an emotional roller coaster I know. Hopefully your current treatment will address the issue at hand. It does seem like you may have a bartonella infection.
I think you are fortunate to get the IV Rocephin treatment. Many have had good success with this.
posted
I was told that I have "Hepatic Hemagomia" after my CT and MRI were reviewed which is enlarged blood vessels that some how become tumors and sometimes grow.., which mine must have grown cuz if they were 6.0 cm by 5.8 cm as an infant I wouldn't of made it. I was NOT told this by a specialist or an endcronologist so maybe it is bartonella infection. I'll ask my doctor to follow up on that thought and see what happens.. Thank you.
Message to MOMLYME : Ty for posting that IV treatment forum for me. I was taking Ceftin before I started the Rocephin for 3 wks. I found that I was definately ill with in 48-72 hrs but found my 3rd week of treatment to be the worst ( I spent Thankgiving in bed with a 103.7 temp and anything else terrible you could imagine ) But this 4th week at 1gm has been a huge turn around. I'm terrified because Tuesday I start at 2 gms and my doc said to expect the same sequence of events once we double the dose.. The only good thing about it I guess.. now looking back feeling some what normal is that I was SO sick I really dont remember much. LOL... Ok , I guess not funny but theres really nothing else you can do but laugh sometimes. I'm not joking about getting that sick though. I dont remember whole nights, parts of days, conversations. I just rememeber sweating, shaking, vomiting, and falling asleep at the drop of a hat anywhere.., including behind the wheel of my car.
I have been able to eat for 3 whole days now and have till tuesday to enjoy being awake and enjoying my family. My doc wanted to put me on the 2gm's starting Friday but decided to wait till tuesday with some hesitation. I think he was nervous that if I felt good I may say to hell with the 2gms..., which is smart on his part cuz I'm looking at tueaday like its the end of the world. I'll do it of course, but now that I know how this all plays out its definately harder to approach an increase / enduced sickness .
Anyways .. Thanks everyone for your time. I still think doctors should be held accountable for basic knowledge of medical procedures and what should and shouldnt be done or had before they order blood work for specific tests.
They're waisting our money, time and most importantly, our health by not thinking threw what they are doing and how to do it before they move forward. Mis-diagnosis happens and I can see how it would be quite complex to figure everything out that they need to. But basic medical proceedure..like "no steriods for 2 wks before a lymes blood test "... Especially if your testing positive for Lymes and then having the western blot to find out the severity and then STILL dont "remenber" no steriods before LYMES follow up on western blot.., then your negligent. Sorry but its true. If you were putting together a car and forgot to put in the brake lines before you put on everything else then you would be in big trouble. This is basic stuff.. Doctors that mess this up should be in big trouble, and if they dont know it they shouldnt be doctors...
Posts: 20 | From harwich ma 02645 | Registered: Oct 2010
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posted
Like you, I was given corticosteriods for years, including injections right into joints that I know now were riddled with spirochetes. I now have an artificial shoulder joint because of failure to diagnose borrelia and then feeding it with steroid injections.
I urge you and EVERYONE who has been misdiagnosed, go to these rate-your-doctor websites and SLAM each end every dumb doc who harmed you. That's what I'm doing.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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onbam
Unregistered
posted
I'd do to the doctor sites and slam the CDC/NIH/IDSA/EIS for lying to your doctors.
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