posted
Today my dr told me the test result came back positive for Lyme.
2 months ago I took a warm Epsom salt bath after a vigorous workout. In the middle of the night I had the worst burning sensation in my lower right abdomen. I thought it was a pulled muscle I had a pelvic ultrasound thought it was uti. All that ruled out Went to see GI dr and still having some tests on gallbladder.
2 weeks later a red band started and eventually turned into a ring. With many more little ones too. Muscle spams and inflammation. My questions are: 1- Could I have had this for a while? Is the rash closly associated with the beginning of the infection? 2- Could I have a false positive? 3- I work on my feet and am starting 3 week antibiotics. Will I need to Take off work? 4- What are the odds of not getting through this with the 3 week antibiotics?
I will most likely have so many more questions and apologize if these questions have been answered somewhere else!
Posts: 78 | From Pa | Registered: May 2015
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Do you know about the SE PA lyme group, good local support? Find them in the list of support groups on this page.
I don't think you have a false positive.
Hard to say how long you have it. Doesn't always produce symptoms immediately. If this is a recent case, you will need less treatment than if a later catch. However, if it were me, I would want more than 3 weeks of treatment. Not every early catch is cured with this length of time.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
Thankyou-
Posts: 78 | From Pa | Registered: May 2015
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, you could have had lyme for a while.
A positive is virtually never a false positive. Since you also have symptoms along with your positive test, you have lyme disease.
I worked throughout my lyme ordeal and so did nearly all of my friends. If you get good treatment right away, you may just have to take off a few sick days.
Three weeks of antibiotics is definitely not enough treatment. That is the standard treatment given by doctors who know nothing about lyme disease.
A lyme specialist will treat you until you are symptom free and then treat you 2 more months since lyme disease is known to make persister forms of the bacteria which can linger.
To get a lyme specialist, see Support Groups on the left side of the page.
To get a good education on the disease you have, read the Burrascano Lyme Treatment Guidelines found here:
Notice that virtually every person with lyme disease gets other diseases as well along with the lyme. In our area of the country, virtually every lyme patient also has babesiosis and bartonella. You will likely need treated for both of these diseases to recover from lyme.
So, it can take a number of months to treat all 3 illnesses.
Keep asking questions and we will keep answering them. Welcome to LymeNet. We will help you here all we can.
I cannot emphasize the necessity to get a doctor who treats lyme disease as the primary focus of his practice. You need expertise to get rid of this disease.
Doctors in this country have been taught that lyme is easily cured, but that is not true. The truth is that lyme is difficult to cure. So, pay for expertise and get a great doctor. The doc is the key to getting rid of this horrendous disease. Can't emphasize that enough.
I had lyme undiagnosed for at least 10 years. I went from doctor to doctor, but since I had never seen a large rash, none of them ever thought of lyme.
Finally, after 10 LONG years of being sick, a smart endocrinologist thought to test me for lyme. That tells you how ignorant of lyme the docs are in this country.
Then, I didn't get well until I got to a great lyme specialist. My primary doc gave me the standard 30 days of doxycycline and said, "I hope I can help you."
That means, if you don't get well in 30 days, don't look to me to stick my neck out and give you anymore treatment.
And, that's what happened. You will not find the length of treatment you need until you go to a lyme specialist.
So, get names in Seeking a Doctor forum, from the Support Groups, and from anyone else who is knowledgeable about lyme. Ask around a lot to find out who in your area is curing folks of lyme disease.
Many doctors treat lyme, but very few have ever cured anyone of it. That is what I have found.
Your job is to find one of the few who are curing people. If you are willing to travel to the Batimore/D.C. area, we have some docs here that I recommend. They will do telephone or Skype appointments after the first in person appointment.
I was cured 10 years ago. I hang around here to help new folks like you and point people to the best doctors.
Be willing to travel. At least half of all lyme patients go out of state for their care. And, in general, lyme specialists do not take insurance. So, be prepared to pay for their expertise.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
1- Could I have had this for a while? Is the rash closly associated with the beginning of the infection?
Most EM rashes take an Avg of 7 days to show up, or up to 30 days. They can appear on any area of the body.
2- Could I have a false positive?
If you had the bulls-eye rash the ans is NO, and it sounds like you did.
3- I work on my feet and am starting 3 week antibiotics. Will I need to Take off work?
Everyone is different, some can work and some can't.
4- What are the odds of not getting through this with the 3 week antibiotics?
posted
Thanks for the responses. My dr said the test showed memory's and that it didn't show past memory but just current memory? Meaning that I am newly infected. Does this sound like anyone else's test results?
Posts: 78 | From Pa | Registered: May 2015
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
, , These post are from "KEEBLER"
Someone replied that you can order another lyme test. I don't know why you would want to do so. You have the positive but you also have the bulls eye rash and classic symptoms.
Best to get evaluated in person by a LLMD to move ahead. They can best assess your case and advise a plan.
Re: your bulls eye & satellite rashes - while not everyone who becomes infected with lyme develops a rash, in those who do, it's not always a bulls eye.
But, even if a rash does not develop early on, it can develop later, sometimes years later. I had 13 satellite bulls eyes decades later . . . but I had never received any proper treatment beyond basic antibiotics, just one at a time, here and there (never enough for lyme).
Other tick borne infections may involve rashes, too. But, as with lyme, the rash may not appear. You should be assessed for other tick borne infections. Some require totally different kinds of medicine that are not used with lyme.
Lyme Disease; Comprehensive overview covers symptoms, treatment, diagnosis and prevention of this tick-borne illness.
. . . rashes can mimic spider bite, ringworm, or cellulitis. Multiple, so-called “satellite” rashes may appear on different parts of the body. . . .
Judie posted this Feb. 2015:
Mine was a raised, round blob, not like a bullseye at all. This article may be helpful. It describes EM rashes.
________________________________________________
- Avoid aerobic exercise until well into a good solid remission. Non aerobic movement is good, of course, within reason of what your body can handle that day - and afterward without "payback" so to speak.
Light weight lifting (only IF your joints are not affected - do not push inflamed joints) . . . Pilates . . . Qi Gong . . . Restorative Yoga (not power yoga) . . . gentle walking . . . . -
_________________________________________________
- Be very careful with bath temperature. Warm is good, hot not so much. It can cause some problems. Heat, in general, can cause problems. Just be mindful to not put yourself in a position to become overheated as we approach summer.
Take care. -
_______________________________________________
- Every one of the symptoms you list is a symptom of lyme. Each could also be a symptom of other tick borne infections - or other things, of course.
No, 3 weeks one kind of antibiotic will not be enough treatment. In fact, that's not really proper treatment at all. But, it's all you have for now so it may help until you can find a lyme literate doctor.
Antibiotics, alone, (especially just one at a time) are not enough. Other kinds of Rx need to be in combination to address the cyst form (that a single antibiotic forces the lyme spirochete into).
But many here don't get the full combination at first so just do the best you can and take one step at a time.
Take good care of yourself. That's number one. All this will work out over time, one step at a time. -
_______________________________________________
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I think you may have a good chance to be able to work on abx if you don't have many "bad" symptoms now. everyone is different- true. I just notice in the people close to me that have been treated that if your sx are bad before tx they will be worse during tx, and if you don't really notice any sx then you won't.
I am not a dr. so this is only my personal opinion.
I knew I had this for a very long time, but the dr did tell my husband that he thought his case was a recent one. but , he did have a deer tick on him like 6 months prior to the dr test, but I think he had it longer than that. so what is 'recent'?
your #3- I recently had genetic testing done and found that I have the perfect make up to not be able to get rid of diseases on my own very well, so I may not have been a person that could have had a couple weeks abx and gotten rid of this.
I do think some people can on 2 weeks abx, but now I know that this is a genetic determinate.
to me it sounds like you have it from your test and that rash. for me, I would proceed as if it were true. I have been so sick because mine was not found until many yrs later
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
posted
Thank you-I don't beleive I was given a western blot test. I am assuming this info is somewhat creditable. I did not show past infection, so she told me there is a chance for a false positive but with rash and symptoms I am being treated. http://labtestsonline.org/understanding/analytes/lyme/tab/test/Posts: 78 | From Pa | Registered: May 2015
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Yes, you could have had lyme for a while, or you could have been recently bit or bit again. It doesn't matter, just treat.
I haven't read all of these but agree with everything TF posted.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Steve,
Oh . . . thanks so much for transferring all that detail I put in the wrong thread. I just could not do that and, even now, facing, this, my brain just swirls. So very much appreciated, your taking the time to help us out here.
bis,
best of luck to you. Be sure to get to a doctor who is ILADS educated and truly lyme literate. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
Two Standards of Care Revisited: Should Lyme Patients Have A Choice?
7th January 2015 - Blogs: Lyme Policy Wonk Lorraine Johnson, JD, MBA
Over 10 years ago, I wrote a piece called Two Standards of Care that explained the different approaches to treating Lyme disease, why the controversy exists, and what patients want. A lot has changed. Today, I am releasing a revised version of Two Standards of Care.
Article at link above. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic