I am 27 years old was just diagnosed with Lyme disease.
I own a gym and health, fitness, and a holistic lifestyle is my passion.
Lately I have been having symptoms that have impacted my job, which led to the positive Western Blot, done by my PCP.
My PCP says that this is an Acute case and that after 3 weeks of Doxy I will be fine, although she did say that I will "always have lyme"
Until about 4 years ago I was super healthy and rarely went to the doctors office.
The past 4 years though I have been in and out of the office constantly and in poor health the whole time.
My focus, energy, and cognition, just haven't been right. I was diagnosed with ADD.
I have had chronic knee pain which has been diagnosed as chronic tendonitis and Petellofemeroal Pain Syndrome.
I have been constantly Ill with the flu, cold, allergies, sinus, etc, despite leading a very healthy lifestyle.
I have constant sharp abdominal pains that I have had various different treatments and tests for with no resolution or real explanation.
I have started slowly putting on weight without being able to keep it off, despite a strict diet and tons of exercise.
I have had constant recurring yeast infections.
I guess my main question is, is the "acute" vs "chronic" cut and dry based on the Western Blot?
My symptoms over the past 4 years definitely have me suspicious but, if its acute and apparently easy to treat then thats good news?
If it really is acute then will the 3 weeks of Doxy do it, or should I still see a LLMD?
Here are my Western Blot results: (I am retyping exactly whats on the report since it doesn't make much sense to me)
P93 Ab. Absent P66 Ab. Absent P58 Ab. Absent P45 Ab. Absent P41 Ab. PRESENT P39 Ab. Absent P30 Ab. Absent P28 Ab. Absent P23 Ab. Absent P18 Ab. Negative
Lyme IgG WB Interp.
Positive: 5 of the following Berrelia-specific bands: 18, 23, 28, 30, 39, 41, 45, 58, 66, and 93.
Negative: No bands or banding patterns which do not meet positive criteria
P41 Ab. Present P39 Ab. Absent P23 Ab. Present Lyme IgM WB Interp. Positive
If anyone understands more than I do what these results mean and could give a little insight it would be much appreciated!
Thanks!
[ 09-15-2015, 12:05 PM: Message edited by: Green_Where_You_Water ]
Posts: 66 | From New York | Registered: Sep 2015
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posted
Hello, IGG means antibodies are present after infection has been present for awhile, usually shows up a month out. IGM is acute which means a current infection.
With Lyme, since you have never had abx or have been treated your body is currently fighting is and a current infection, but at the same time it is not a new infection since you have had symptoms off and on for years.
Testing is not too reliable, if not done through a specialty lab such as Igenex.
Based on your symptoms you have had this for a few years most likely. I would get yourself into an LLMD and get tested for co-infections, babesia and bartonella. Both of these are very common and doxy will not touch it.
This is serious and you will have to be on abx for months, probably about 9 months would be my guess.
I was treated within 1 month and was lucky enough to find out about lyme and babesia and was treated right away, but was on abx for about 10 months total.
You can do it, but do not put it off you will only suffer longer. Get it done and take it seriously, read all you can.
Memorize Burrascanno guidelines, print them off and know it.
This is my best advice to give you. You will have this forever, but like the chicken pox you will be fine.
................................................
(Breaking up the paragraph for easier reading for many here)
posted
I was finally just able to connect with a LLMD in my area...he charges $925 for the initial visit! I'm assuming this is the norm? I don't see how I will be able to afford that : (
Posts: 66 | From New York | Registered: Sep 2015
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posted
Hi - you could ask around and see whether there are any cheaper LLMDs in the area.
Treatment occurs in three areas: kill/deter the organisms, detox, and fortify the body.
We usually start with antibiotics, and there also lots of remedies that can have an impact. I am able to reduce inflammational joint and muscle pain by taking capsules of turmeric, which is anti-inflammatory. I get it in bulk at the health food store, dip 00-size capsules into it and take a couple a day. I feel pain relief fairly quickly.
It will be important to get your thyroid levels checked, like T3, which can drop. I got much better cognitive function when I went on Armour thyroid, to treat hypothyroidism.
After this many years, this is not called acute. Acute is within the first several weeks of exposure to the infections. This is called chronic. You can treat. Many, if not most of us, start from a chronic diagnosis.
The 23 band is specific for Lyme. The top of Medical Questions has information about Lyme and co's. You can look there for Dr C's explanation of the Western Blot test.
We have to see LLMDs, because they are trained to recognize and treat these infections.
KH gave you some good advice here, including checking for other infections. I usually ask folks to look at the symptoms for the other infections to see whether they think they match any of the other ones.
Hang in there - you will get better in time -
Posts: 13116 | From San Francisco | Registered: May 2006
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
If you've been suffering for so long with strange symptoms, it may be that it is NOT ACUTE, but chronic.
3 weeks doxy is what MOST of us took at start. It NEVER WORKED for me, not even after my first bite. And I had ACUTE lyme (just bitten first time ever!).
If ALL your symptoms fade after 3 weeks doxy, consider yourself a VERY lucky guy.
My only symptom was a EM rash. It faded after 2 weeks doxy. Only then, my REAL PROBLEMS started!!
Symptoms can come back or develop (like in my case), after doxy, then you become just one more lyme sufferer.
Inform yourself, I would buy Buhner's books, with PLENTY of suggestion of herbs and supplements.
His books are really good and you can buy bulk herbs, that are not that expensive.
It's amazing how much LLMDs cost in the US. Here in Germany /Switzerland there are some, they are expensive, but not to that point!!!
If you can't afford all these costs, read, read, read. Inform yourself, there are many people here that buy drugs by themselves (in special online pharmacies), herbs, supplements, machines etc.
Go step by step. Information is worth gold.
Of course, a specialized doctor would be great, but if you spend most of your finances in your first months of treatment, it is like suicide.
Think that it may take years to heal, with non stop treatment. Chronic lyme takes years to heal, not even months. There are too many causes to be treated (not only microbes), and the whole body needs support.
True healthy people do NOT catch lyme. I thought I was healthy, too, but I see so many other people being bitten and not falling sick.
There is a problem with our immune systems, a very deep rooted problem to be fixed. Or the lyme bacteria (borrelia) would be easily doomed by our immunity.
Many high performance sportspeople get lyme. Specially because during high physical activities, the immune system is temporarily shut off (so that the body can perform physically).
Posts: 6199 | From Brussels | Registered: Oct 2007
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quote:Originally posted by KH111: Hello, IGG means antibodies are present after infection has been present for awhile, usually shows up a month out. IGM is acute which means a current infection.
- Not always .. not with Lyme disease.
From Dr C's Western Blot explanation:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result."
posted
Thanks for all of the info everyone! The support on this site is amazing!
I have found a cheaper LLMD who charges $550 for the initial 2 hour visit and $245 for followups. Thats still going to hurt the wallet for sure but a little easier to swallow than $925!
How often do you guys see your LLMD? And I am of course assuming that every medication, test, treatment, lets is an extra cost on top of the cost for the visit?
Brussels, thanks for the info, I will definitely check out those books. Everything is just so overwhelming right now, I don't really know what direction to go in.
Did most of you begin seeing a LLMD right away or only after the doxy didn't work?
I am afraid to wait until the Doxy doesn't work. Especially because I am having significant cognitive symptoms at certain times of the day that is making it hard to work.
Lymetoo, thanks so much for all of your support with finding LLMDs and answering my questions! Your Western Blot information was really helpful!
Posts: 66 | From New York | Registered: Sep 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
A good lyme doctor sees his patients monthly. Sometimes, if you are progressing well, you can go for 2 or more months without seeing the doctor.
But, in the beginning, for at least the first 6 months, expect to go monthly to see him.
Many of the tests the lyme doctor orders will be covered by insurance just like when any other doctor orders them.
So, he will do routine bloodwork at first and then every few months. That will be covered by your insurance.
Prescriptions will be covered by your insurance like they always are. Only a very few medications will the insurance give you trouble on.
At the initial visit, the doctor will do special tests for lyme disease and its coinfections. If he uses Igenex for these, it will be costly for you. Igenex does not take insurance.
If he uses Quest or LabCorp, their tests are pretty junky. So, they will be covered by insurance but could return negative results even though you actually have the various diseases.
It is about $250 for lyme testing through Igenex. If you get tested for lyme and all of the coinfections, it can cost up to $800.
If your lyme doctor is willing to diagnose you based on symptoms alone and past medical history, then you won't have to pay for any lyme testing. Then, how you respond to treatment will confirm the diagnosis.
So, you have to find out more about the doctor. Does he require Igenex testing or not, etc.
I was sick for 10 years before a doctor tested me (through Labcorp) and found out I had lyme. My primary then gave me 30 days of doxy. It helped, but as soon as I finished the Rx, my symptoms that had left all returned. Primary would not prescribe more doxy and sent me to a neurologist.
He did many horrible tests (spinal tap, etc.) and declared I did NOT have lyme and treated me as someone with mental problems. He gave me no treatment.
So, because of this horrible treatment (which is typical for a lyme patient), I immediately searched for a lyme doctor to help me.
Skip the mainstream doctors if you know you have lyme. You will not get appropriate help until you get to a lyme specialist.
This will save you lots of agony and emotional turmoil. Go where you will be understood and treated with respect--to a doctor who specializes in lyme disease and its coinfections--as soon as you possibly can.
I got my life back even though I had had lyme undiagnosed for at least 10 years.
I completed my treatment (for lyme, babesiosis, and bartonella) over 10 years ago now and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease. Praise God!
That is why I can advise you to RUN, not walk, to a good lyme doctor asap.
Posts: 9931 | From Maryland | Registered: Dec 2007
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