posted
I just got my Western Blot showing IgG66 positive and IgM23 positive my llmd did not think it was a big deal,I'm so confused do I have lyme disease? My llmd wants me to heal my gut and boost my immune system before I start more antibiotics after a 3 week course i broke out in hives,but still confused am I lyme positive?
-------------------- Jada Posts: 7 | From NJ | Registered: Jun 2017
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posted
It is quite likely that you have Lyme disease (not lymes).
How long ago was your bite? If it was months ago, then your doctor knows there is no big rush to treatment. He/she can spend time getting your gut ready to handle the antibiotics.
Because you have already reacted with hives makes it even more important to heal your gut .. at least to some extent.
If this is a recent bite, then time is of the essence and you need to get started on treatment. There are many med choices.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Jada, perhaps your doctor is not really lyme literate. You can ask others here and in lyme support groups to find out if your doc is any good.
See Support Groups on the left side of the page. Find the ones in your state and nearby states and contact as many as possible.
Ask them about your doctor. Ask which doctors are getting lyme patients well.
You can also ask on LymeNet in the Seeking a Doctor section. Don't give the doctor's full name. That isn't allowed. Just give the first letter of his last name and the state he is in.
Those who know the NJ lyme doctors will be able to tell you what they know about him.
It sounds to me like your doc decided that you definitely have lyme disease. He did the Western Blot test for lyme, then he gave you 3 weeks of antibiotics to treat lyme, and based on your reaction, he has decided to boost your immune system and heal your gut before treating you for lyme any further.
So, he knew the proper test to do on your for lyme disease, and he started treating you with antibiotics which is how lyme is treated.
Lyme weakens the immune system, so it seems that he has decided you have had lyme for some time. He believes you have a weakened immune system. From what? Ask him!
Also, people with lyme disease OFTEN break out in hives to many antibiotics and other medicines. When I had lyme, I started getting hives to my hormone replacement therapy, to many antibotics, and to many anti-inflammatory medications used to treat back pain.
I lived with hives for over 4 months at one point.
So, you now have to learn as much as you can about who the best lyme doctors are. This is not easy. It takes time.
Bands 23 and 66 indicate lyme disease. So, the majority of true lyme specialists would tell you that it appears that you DO have lyme disease.
See this quote from Dr. C who wrote the explanation of the Western Blot lyme test:
"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.----]
So, if you tell us your symptoms and they are typical lyme symptoms, then you meet Dr. C's criteria for being treated for lyme disease.
Look at pages 9-11 of the Burrascano Guidelines for a good list of lyme symptoms. See how many of these symptoms you have. (Nobody has them all--usually)
I know a lot of the lyme doctors in New Jersey. I don't recommend any of them, however. If you are willing to travel to Washington, D.C. for your first lyme doctor appointment, I can give you the name of an outstanding lyme doctor who is now taking new patients after not taking them for at least 2 1/2 years.
If you are interested, let me know. You can do telephone appointments with the doctor after your first in-person appointment. So, you would not be traveling much at all. You could take the train to D.C. and then a short subway ride to the office, so it would be nearly effortless and quicker than driving.
If you have had symptoms that indicate lyme disease for at least a year, then you most likely do have a weakened immune system by now. See what Dr. Burrascano says here:
"A very important issue is the definition of “Chronic Lyme Disease”. Based on my clinical data and the latest published information, I offer the following definition. To be said to have chronic LB, these three criteria must be present:
1. Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels)." (p. 3)
So, as you see, lyme disease will break down your immune system like AIDS. If you have been sick at least one year, you are likely suffering with a weakened immune system now. That means that viruses that you previously had (like mono, herpes, etc.) can also reactivate.
With a weakened immune system, you will just accumulate more and more diseases. So, you really can't just ignore what is happening.
Burrascano says that the remedy for this is to do a certain kind of rehabilitation (exercise) program. It is one continuous hour of weightlifting every other day. A full body workout must be done each time.
"Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission." (p. 31)
So, to restore your immune system, begin lifting very light weights, numerous repetitions.
To heal the damage the disease has done to your body, take the supplements Burrascano recommends. Start reading about this on page 27.
Some doctors fear treating patients who do not have a fully positive lyme test. (Your lyme test is not "positive" according to the CDC. The CDC requires a lot more positive bands.) So, if your doctor is one of those, you must switch to a doctor who has the courage to treat a person with just 2 positive lyme bands on the Western Blot.
As I said, there is a big learning curve to go through regarding doctors who treat lyme disease. You will have to learn about the doctors in your area and who is the best at treating lyme disease.
I suggest you try to find one who follows everything you see in the Burrascano lyme treatment Guidelines document I have quoted from above. Otherwise, you can spend a lot of time and money with a doctor who really doesn't know enough to get you well.
The doctor I recommend follows Burrascano. She is expensive. All good lyme doctors are unfortunately.
Welcome to LymeNet! Keep asking questions. We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Thank you for all the information I'm very thankful that you took the time to explain everything to me.
I guess then I should continue with the antibiotics even though I broke out in hives my Dr is Dr. E from N.J.the Dr.also had Lyme so is a LLMD.and seems to think building my immune system will help.
I don't have any joint pain my main symptom is in my bladder and candida high EBV high c4 mycoplasma great anxiety issues.
I was bitten this time last year also bitten in 2006 so I've had it a while
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posted
I forgot to mention i have digestive issues and tremble a lot.
I'm out of funds right now to see another doctor at this time as I spent about $4,000 already going from dr to dr before I found this one,
but If I can save some money I will consider the doctor in Washinton if you can send a message to me with their namethank you much with all of your help
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Hi Jada, if you are breaking out in hives, that is an allergic reaction. You should report that to your doctor. He may want to use a different med.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you the name. Once more people find out that this doc is now accepting new patients, she is likely to fill up quickly and have to close to new patients again.
Just want you to know that you can't count on her being available to you in a few months. If you could put the charges on a credit card, that could be a way to switch to this doctor while you have the opportunity.
You are naming a lot of common lyme symptoms.
If an antibiotic causes hives, I would stop taking it. The reason is that you could have a hive reaction in your throat and your throat could swell up and you would be unable to breathe.
So, it is not something to take a chance with.
There are many antibiotics that treat lyme, so you will have to try something else.
Make a note in your medical file of the name of the med, dates you took it, dosage, and the fact that it caused you hives. In the future, you will have to tell other doctors about this so that they do not give you the same antibiotic.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Thank you the dr did say that I was allergic,and thought it was from the yeast candida and wants me to heal my gut some and build my immune system with colostrum,vitamins,duflican no wheat,dairy,sugar eating as clean as possible.
I hope that I'm doing the right thing as I'm new to Lymecand don't really know what I'm doing. I can use all the advice that I can get.
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posted
Yes thanks I do have the names and all of the dates really didn't want my throat closing or anything I was affraid of that.Thank you for the Dr name yeah I know that i need a appointment with them asap,but my credit cards are maxed already I'll see what I can do spent so much on this darn lyme so far.
-------------------- Jada Posts: 7 | From NJ | Registered: Jun 2017
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By your protocol, it seems that your doctor believes your candida is the worst infection right now. It appears that he's trying to get it under control before he goes after the Lyme again.
I'd follow what your doctor says.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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"There are NO good LLMD's in NJ. NJ is a wasteland of bad docs. I can tell you from years of experience, unless you go with an established doc (of which there are only a few on the east coast) you will get under-treated and continue to relapse.
PLEASE TAKE MY ADVICE. NJ is a bad place for ticks and a bad place for tick doctors."
"The LLMDs in NJ are not very good based on patients' experiences. People start with them then end up going to see other LLMDs out-of-state."
"Over the years, the folks in New Jersey have said that the best Lyme doctors are not there."
"I strongly suggest that you be willing to travel outside of New Jersey to get good treatment."
"There are Lyme doctors in the area you have named, but I don't recommend any of them. To get a good Lyme specialist, you will have to be willing to travel. At least half of all Lyme patients go out of state for their care."
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Scroll down for financial help, etc., available from several sources.
The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need. I think coverage is up to 75%. View on www.lymetap.com
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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