posted
Hello, I am new to this site and have never used a forum before so I don't know if I'm doing this correctly, but I need some help.
I have had so many health problems for the past 5 years and am at a loss. First, it was acid reflux, candida, extreme foot pain, knee pain, rashes, ringing in ears, headaches, weird electric zap feelings that cause insomnia,
feeling tired all the time, hypothyroid, ovarian cysts, irregular menstrual bleeding, EXTREME right side rib pain that wraps around to my back and has been there for over 2 months now.
I've been to physical therapists, massage therapists, chiropractor...etc. and nothing helps this pain. I am also suffering from extreme panic attacks and depression. I am scared.
I started seeing a natural doctor who has tested me for everything. She took 18 vials of blood! She tested for autoimmune everything and I didn't have anything, but had a dormant EBV.
I mentioned that I have had over 10 ticks in me in my lifetime and she tested me for lyme through Igenex. Here are my results:
Igenex Igm result: IND CDC: NEG
31 + 34 IND 41 + 83-93 IND
Igenex Igg result: NEG CDC: NEG
34 IND 39 IND 41 ++
The doctor said she thinks it's postiive, but doesn't know and wants me to see a LLMD. I have an appointment with one, but not for a while and I'm going insane trying to understand my results.
Please help me! What do you think of these results? I don't know where else to turn and need some help/support so I came here.
I know if I have lyme, it would've been for about 5 years now, I think. It would explain everything that I've been going through and make so much sense, but the test doesn't seem to think that. Please help and thank you so much!
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(breaking up the post for easier reading for many here)
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Welcome sardavis! cdc negative means nothing. Yes, it looks like lyme. I had the same INDs, ++. 10 ticks screams lyme also. You are not alone. I had it most of my life and never knew until it got bad.
Don't panic. You can still treat it. In the interim you might want to check out Stephen Buhner's books on lyme. His herbs help.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The numbers are bands. You have listed the bands that were + (positive) and the bands that were IND.
A + means that your body made antibodies to that band. In order to make antibodies, something was in your body that your body reacted to. More than one + means a lot more antibodies to that band.
IND means "indeterminate." That means, your result for that band was not negative, but there was some reaction (some small amount of antibodies) but not enough to reach the + level. So, we call that a weak positive on that band.
Here is a quote from the Burrascano Guidelines. It tells you what the Western Blot will look like if you have lyme:
"Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes.
The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands." (p.7)
So, you reacted to bands 31, 34, 39, 41, and 83-93. Burrascano says that if you react to band 41 (you did) and at least ONE other of the lyme-specific bands named, you have lyme. You reacted to 4 lyme-specific bands in addition to band 41.
Here is a quote from a different lyme doctor, Dr. C in Missouri. It says the same thing:
"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
[---- from DR C's update from 2005 --- ----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]
This is true regardless of whether it is IgG or IgM.. "
You may want to read the entire explanation of the Western Blot at the link above. Dr. C is very good at explaining this test.
Hopefully, this will give you confidence that you DO in fact have lyme disease.
To prepare for your first lyme doctor appointment, look at the list of lyme symptoms on pages 9-10 of Burrascano. Make a list of every one you have.
This will help the lyme doctor immensely. If you want to find out how Burrascano says that lyme should be diagnosed, read page 7.
Here he says that the tests are not reliable, so you base the diagnosis on symptoms, medical history, ruling out other causes, and lyme tests.
Then, after all of that, to prove the diagnosis, give the patient a trial course of lyme treatment (antibiotics) and see what happens.
That is how lyme has to be diagnosed even in 2016 because we STILL do not have very good tests. They miss so many cases of lyme.
If you have a positive lyme tests, great, but for the large number of folks who don't, this tells doctors how to determine if the person has lyme.
Most medical folks would call your lyme test a weak positive. But, a lyme specialist would say that your body is reacting to all of the right bands on the Western Blot, so it is lyme.
There is no other way to get the test results that you got. Positive and weak positive test results can be relied upon. It is the negative test results that cannot be trusted.
So, you are fortunate to get the results you got. A lyme specialist will treat you for lyme.
I had undiagnosed lyme disease (plus babesiosis and bartonella) for at least 10 years before a doctor thought to test me for lyme. Still, I got well. I got rid of my diseases when I finally went to a lyme doctor who followed the Burrascano Guidelines.
Then, I sent 5 of my friends to docs who followed Burrascano, and they also got well. That is why I believe in the Burrascano method of treating lyme disease.
It is now over 11 years since I was cured and I am still symptom-free and enjoying my life. I stick around here just to point folks to the good doctors.
I wasted 2 years with 2 other lyme doctors who did NOT know enough to cure me. So, do a lot of research and find the lyme specialist who is getting people well. These are few and far between.
MANY doctors treat lyme disease, but very few have ever cured anyone of the disease. That takes a lot more expertise.
So, contact lyme support groups (see Support Groups in the left side of the page) and get input from folks on this site and other lyme sites. Talk to as many lyme patients as possible before choosing your lyme doctor.
Study the Burrascano Guidelines also. They tell you what good lyme treatment looks like. Evaluate your lyme treatment against these Guidelines.
Welcome to LymeNet! We will help you here all we can.
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(breaking up some of the post for easier reading for many here)
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Just because the test isn't CDC positive does not mean it isn't lyme. A long time ago a group of doctors got together and agreed on how many bands were required to make it CDC positive. There wasn't uniform agreement, it was a compromise. And CDC positive is for surveillance criteria, it was never meant to be diagnostic.
Even aside from all of that, the tests aren't perfect. They test your antibody response, which requires a healthy immune system to mount an antibody. But lyme suppresses the immune system, so someone who is very sick with Lyme may not be able to mount effective antibodies.
In the end, Lyme is always a clinical diagnosis, and the more familiar and skilled the doctor, the better. So seeking out an LLMD as you are doing is the perfect thing to do.
Based on your test results, it seems very likely that Lyme is responsible for your sx. Also, Lyme usually has some co-infections too, so if you haven't already been tested for the usual suspects, your LLMD will likely do that too.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
I had a similar test result. Some positive, some IND. I recently switched LLMD and he did a western blot with a lab that will send the actual picture.
I have 10 active bands, they just aren't strong enough for the CDC to say I have lyme. However, My lyme Dr. says it is a YES.
Good luck. My advice to you is to find the best LLMD, even if you have to travel to get there.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
CDC guidelines were developed for surveillance, not diagnostic, purposes and mean nothing (to put it nicely).
Technically, Lyme disease is a clinical diagnosis, meaning that a qualified doctor takes your history, symptoms and test results into consideration when making a diagnosis. You don't have to have a positive test to be diagnosed with Lyme.
Lyme tests are very insensitive and flawed; however, there are more false negatives than false positives.
Based on your results, I highly recommend you see a LLMD.
You can create a new post asking for recommendations for a qualified LLMD. There are wonderful LLMDs and those who claim to be LLMDs but are in it for the money. That being said, LLMDs usually don't take insurance and are quite expensive. This is because Lyme is also a political and economic disease, so to speak.
I also highly recommend you educate yourself about Lyme disease. It is a very complicated disease. Some good resources are "Cure Unknown" by Pamela Weintraub and "Why Can't I Get Better?" by Dr. H.
The good news is that you found a forum that is full of kind people who offer insight and support. The other good news is that there is hope for getting better, even when you feel completely hopeless.
I felt completely hopeless for a long time, but I am making progress now that I am undergoing aggressive treatment from a LLMD.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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posted
Thank you for all of your responses. I am trying to learn as much as I can before going to a llmd. This is all so much!!
I need to think about my course of treatment. I know there's a lot out there. Would antibiotics help someone who's had this for so long?
I don't even know where to start. Already eating healthy. Avoiding grains, soy, gluten, alcohol and sugar.
For the last year or so, if I tried to drink alcohol, I would throw up hours later. It even happened with one beer. ONE! Now I'm not drinking anything because it's just not worth it.
I also found out that I have 2 MHTFR mutations. I am noticing a lot of people posting about those. Is there a connection? Thank you all so much for your information and hope!
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had lyme twice as long as you (at least 10 years) before I started treatment, and antibiotics got me well.
But, not just any antibiotics. It has to be high-dose combinations of antibiotics. At least 2 at once per Burrascano, and often 3 at once to kill lyme.
You will see your reaction to alcohol in the list of Burrascano's lyme symptoms (pages 9-10).
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease specialty lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. If at all possible, you want a doc who does EVERYTHING Burrascano says to do.
He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines. He was the most successful lyme doctor on the planet and they came from every country in the world to be treated by him.
This is important. You don't want to waste time and money on an ineffective treatment plan. I wasted 2 years with a doc who gave me only one antibiotic the entire time. What a mistake.
Burrascano says you always have to take 2 different antibiotics to kill lyme in at least 2 forms. Lyme can evade any one antibiotic just by changing into a form that that antibiotic cannot kill.
Being on one antibiotic at a time is called "monotherapy." Everyone on LymeNet knows that monotherapy will always fail. In fact, lyme is so difficult to cure now that good doctors often give patients 3 antibiotics at a time to kill it.
And, a good lyme doctor is going to test you for coinfections (or at least question you about the symptoms of coinfections) at the very first appointment.
This is because if you don't treat every single coinfection the patient has, you will NEVER get rid of lyme disease. The infections all suppress your immune system and so help each other retain a foothold in your body.
Please know that there is no standard ABC treatment for lyme disease. A lyme doctor is free to do anything he wants. That is why I am giving you a quick summary of the Burrascano Guidelines. Don't waste time with a doc who doesn't do the things listed above.
Inquire of other lyme patients regarding how the various lyme doctors treat. Pick the one that uses high-dose combinations of antibiotics like Burrascano says. AND, be sure he tests for and treats all lyme coinfections.
Since you have had lyme for over a year, you definitely have coinfections also. The most common are babesiosis and bartonella. That is what nearly all of have/had.
Get to the best lyme doctor you can possibly afford. And, be willing to travel to get to one with lots of expertise. That gives you your best shot at turning your life and health around.
If you want to travel to Maryland, I can give you the name of a good lyme doc here. You only have to come in person once every 3 months. The doc will do monthly telephone appointments with you the other months. This is how folks get good care for this difficult-to-cure, horrendous disease(s).
Regarding MHTFR mutations, about 25% of all lyme patients have them, so a good lyme doctor knows how to help these folks detoxify during lyme treatment so that the treatment itself does not make you ill from all the toxins these germs put off when they are killed.
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(breaking up some of the post for easier reading for many here)
Intolerance to alcohol was one of my early symptoms, and a very surprising one, since no one knew what was going on with me at social drinking occasions.
Yes, MTHFR mutations matter re your ability to detox and handle treatment. You want to be working with an LLMD who understands how to boost your system with the right supplements. I think it might be a good idea to start with this, since it will help you to better handle treatment.
Posts: 13117 | From San Francisco | Registered: May 2006
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
MTHFR mutations definitely do matter. They're huge. They affect your ability to detox. Be sure to tell your lyme doc about them. Gene mutations such as MTHFR and others affected my ability to detox abx. It was difficult. I couldn't take abx for very long and I think that was one reason why.
There are other methods besides abx, but basically two main schools for treating lyme. One is Burrascano's way (abx), the other is Dr. K (alternative), so you might consider a good (word of mouth) Dr. K practitioner as well.
Fyi, I found a really good Burrascano type doc and he couldn't help me much. My basepoint (measure of improvement) kept dropping back to the same old number meaning I wasn't improving. There are just so many things that pop up with lyme. All that said, the alternative methods have helped me the most.
There is a famous houeswife of Beverly Hills, TV show, (Yolanda Foster) who couldn't get well, stayed sick and deteriorated. Then she saw Dr. K and started to get better (something to think about). Here is some info on Dr. K.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome!
I've got to speak to TF's post saying you must do this and that. SORRY! Unfortunately, you won't be able to do that, as Catgirl mentioned.
The 2 MTHFR mutations are very important, VITAL, in this situation and will dictate what you can and can't do.
There are professional people you can consult with who will help you thru this mutation situation. There is an MTHFR section located here that tells how to find an MTHFR professional. SOME, very few LLMD's, know what is needed to be done about MTHFR.
The most important thing is you NOT over do it by doing things like taking certain antibiotics or other drugs, taking 2 or 3 antibiotics at once, or using heavy duty doses like Dr. B's recommends in his protocols.
Toss those guidelines for now. Please. You could end up being septic and die if you try to do what he is saying. That document was written YEARS ago, before MTHFR was a consideration.
Approximately 1/3 of Lyme patients have this MTHFR problem, maybe more. Tons have suffered with it.
And it is a really good thing you know about the gene mutations now. Many have died by not knowing about this information in advance. Many have tried, or actually committed suicide as a result of approaching this situation in the wrong way.
I highly recommend getting a handle on the MTHFR situation ASAP so you won't have a "bad trip" on your drugs.
If there is anything else I can do to cheer you up, please let me know!
posted
I was already interested in alternative treatment, but now I guess I'm thinking that's the way I should go. I have a LLMD that specializes in the MTHFR mutation. I have my first appt next week so I'll be sure to let her know. Thanks so much for all the info!
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