posted
I was tested for Lyme earlier in December and got the results of my EIA and Western Blot a couple of weeks later.
I have a history of two tick bites that I know of, one in 1981 in Europe and another in Indiana in the early 90's. I developed a bullseye rash and flu-like symptoms after the second bite.
I was never tested back then because I really didn't know anything about Lyme at the time. But the numerous unexplained symptoms I have had over the years and am currently experiencing make me highly suspicious that I may have it, and that if I do it's been untreated for 25 to 30 plus years.
My dr. insists my tests are negative even though the antibody screen was highly positive. My value was 1.72 and anything at or over 1.10 is considered positive. But my Western Blot was only reactive on the IGG band 41. I don't know what lab did the test but it was probably LabCorp or Quest.
My dr. said he could try me on 10 days of Doxy if I wanted and I told him if I in fact do have Lyme I am in the late stages and 10 days of Doxy won't help me. He really doesn't seem to know much about Lyme.
I cannot afford to go to a LLMD nor can I afford to pay for an Igenex test. Please help. Any insight greatly appreciated. Thanks.
(breaking up the post for easier reading for many here)
posted
I've been there. There's not much you can do other than save money to pay for an initial consult with an LLMD out of pocket. That's what I ended up having to do.
Posts: 173 | From USA | Registered: Aug 2015
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Girl, you've come to the right place. . . Lymenet will help you !
First, when you post, break up sentences, like I'm doing right now. Many of us have difficulties reading and following text.
If I were you, I would start researching as much as you're physically able on Tick Borne Infections. You can do this right here on lymenet by utilizing the search button function. There is so much to learn when you are a 'neebie.'
There is something you can do now. You could take the 10 days of doxy. Wait 4 weeks and request another western blot test. This is called an antibiotic challenge. Sometimes it will make a Lyme test come back with more reactive bands.
Make sure, from this day foward, to get a copy of any and all tests or procedures you have done. Make a daily journal of your symptoms. Buy a folder to put everything in it health related.
You are your own advocate in this Lyme maze. You will encounter many, many mainstream doctors that have NO clue about Lyme disease. They are evidenced trained . . . which means if you have a negative test, then you don't have Lyme. They don't know, or don't want to know, that Lyme tests are 50% to 75% inaccurate.
Another problem you'll run into, is even if you do test positive, the standard treatment is 28 of antibiotics and they declare you 'cured', which, unfortunately is not true.
You can go the herbal route, antibiotic route, alternative route, or combinations. That is for you to decide, so you need to be educated.
It took me over 3 years and 19 doctors before I found lymenet and got myself a LLMD. My story is the norm, not the exception. So much sickness, pain and utter despair, that in my opinion, should be considered a criminal offense.
It will be a long journey, no quick fix. But you will get answers and you can get better.
Let us know want you need and how we can help. Others will respond to any questions you may have. Good luck and start fighting !
Posts: 2977 | From Florida | Registered: Nov 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Welcome! You don't need to test if you had a bull's eye rash - that's definitive for Lyme. You need to treat! And you're in the right place here!
Many of us went a long time undiagnosed and we're doing better now because we found treatments that worked for us. It is possible to feel better!
Having said that, you will need to consider the route you're going to take, as in can anyone loan you the money to see an LLMD? If not, then there are cheaper natural ways to treat, and one of them is called the Buhner herbs and there are online groups of people using them to treat.
Posts: 13116 | From San Francisco | Registered: May 2006
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quote:Originally posted by Robin123: Welcome! You don't need to test if you had a bull's eye rash - that's definitive for Lyme. You need to treat! And you're in the right place here!
Many of us went a long time undiagnosed and we're doing better now because we found treatments that worked for us. It is possible to feel better!
Having said that, you will need to consider the route you're going to take, as in can anyone loan you the money to see an LLMD? If not, then there are cheaper natural ways to treat, and one of them is called the Buhner herbs and there are online groups of people using them to treat.
Robin123 my dr. said that the bulls eye rash is not definitive for Lyme, that it occurs in other conditions.
I don't think my dr. has a clue about Lyme to be honest....
Posts: 4 | From Ohio | Registered: Dec 2017
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
If you can't afford testing and expensive LLMDs, I would buy Buhner's books and start from there.
You can buy the herbs on your own, if you buy bulk they aren't that expensive.
Another thing I would do is control my diet.
I did not know that in my case, milk products besides gluten could cause such big damage (high inflammation).
You can spend months on trying to get positive tests, but then you still got to spend months or years on treatment.
then when you start treating, you gotta keep testing, and these tests are not accurate.
Besides, it's rarely lyme alone (meaning, only Borrelia burgd). You may have to deal with a list of coinfections, as most people do.
These coinfections are even hard to be tested for (like babesiosis or bartonelosis).
I would just move directly to treatment, first on your own, while you keep searching for help.
that's what I would do.
Posts: 6199 | From Brussels | Registered: Oct 2007
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