Diagnosed with RA... Is it really Lyme?

Thanks Traveler! I have a number of the myco symptoms. Its just that my problems are mainly in tendons, and seeing how borellia love collagenous tissue, I'm going to go ahead with the Igenex western blot just to rule out Lyme, or confirm it.

Lyme WB results (done by LabCorp, not IGENEX)

Lyme, Western Blot, Serum
Lyme Ab IgG by WB:

IgG P93 Ab. Absent

IgG P66 Ab. Absent

IgG P58 Ab. Absent

IgG P45 Ab. Absent

IgG P41 Ab. Absent

IgG P39 Ab. Absent

IgG P30 Ab. Absent

IgG P28 Ab. Absent

IgG P23 Ab. Present Abnormal

IgG P18 Ab. Present Abnormal

Lyme IgG WB Interp. Negative

Lyme Ab IgM by WB:

IgM P41 Ab. Absent

IgM P39 Ab. Absent

IgM P23 Ab. Absent

Lyme IgM WB Interp. Negative

bump - I'm not knowledgeable when it comes to chelation of heavy metals.

Pendol said...
Hello, bdavis,

How are you doing lately? Are your herbs working for you?
I just read your previous post to find that your symptoms are unbelievably similar to mine.
Symptoms like tendon and joint pains that are debilitating, extreme pain, even swollen nodes in the groin are! Plus, you were diagnosed as RA, and middle age male. Almost same.

What's most surprising is that you said you are in South Carolina, right? I moved to SC back in 2007 for studying, and back then, I used to walk often in forest (a lot of tall trees). Then, just a year later, I started to show the symptoms you described, and got diagnosed as RA.

Just want to share my story with you, and want to know how you are doing. If you are successful with some protocols, please let me know as well. who knows? Your protocols may work for me as well.

Sung

Hey Sung,

I've been on the herbs for Lyme for over 5 weeks, and have been adding in the herbs for mycoplasma, little by little over the past week or so. I am still actively getting flares, although my wife just reminded me that I haven't gotten any so bad that they wake me up in the middle of the night, since I started on the herbs. I still go out places and then find I have gotten flared up so bad I can hardly walk and need hep to get back. I can feel a pick up in energy from some of the herbs, but still fatigue and crash in the middle of the day. Still have swollen nodes.

My doc mentioned checking the water for mercury. I have a well. I use reverse Osmosis but only for drinking. I got some mercury test strip to check my water where you estimate the relative level by the color the indicator turns. I checked rain water and the RO filtered water for a baseline. Both had levels somewhere between 0-50 ppb. The well water coming out of faucets tested at what looks like 200 ppb! I found out that 200 ppb mercury is the point at which the EPA considers a liquid to be toxic waste!

Even though I'm not drinking this water, we shower in it, and use it for everything else a household uses water for. Also we have a goat dairy and they drink that water and then we drink the milk. This could be the source of my high mercury levels. I am taking a sample in to a water testing facility to get a more accurate test today. Will post the results here when I get them.


Yes, I'm in SC and yes, I (used to) spend a lot of time in the woods. My house is in the woods. I think at one point I had like 17 ticks on me at once. Also have gotten into nests of nymps with countless ticks. Sung, in what area of SC do you live? What have you been tested/treated for so far?

Hi, bdavis,

Sorry to hear you still have flares, but, it seems like you are gradually getting better as well.

I was in Columbia for 2 years doing my master works at USC. Aa I said, just one year after I moved there, I developed all these symptoms.

My initial symptom was flu-like symptoms, extreme chills, and night sweats. Did you lose much weight since you got sick? or gain weight? I lost almost 25 lb. since I got sick. I have been treated with RA drugs, but now I am still on prednisone. Since last May when I suspected that my RA may be lyme, I was starting to take some herbs to see if they work for me. I was not tested for lyme or met LLMD because of my financial issues.

So far, I experienced a slight improvement on my symptoms while on some herbs. Japanese knotweed, Teasel, Grapeseed extract, and Serrapeptase, and Thyme seem to agree with me and help me. I experienced herx at first, but over time, I got OK with them.

However, other herbs like cat's claw and Turmeric did not agree with me. I got severe herx, and over time, I got almost crippled, so I decided to stop them at all, and then, my swelling and painful joints got improved then.

It's funny you mentioned about water. I drank tap water while at Columbia, although I have never drunken tap water in my life. And, I used to walk in the woods with a flip-flop on at that time. How stupid I was!!

Hope you will feel better!
Sung

sebreg said...
I think given your exposure to ticks, living in the woods, times pent hunting, etc gives you a high degree of having being exposed to borrelia/coinfections at some point, especially given your symptoms. Just a head's up, the WB we use here shouldn't be used to rule out a borrelia infection, even if you test negative. And there are many pathogenic borrelia out there, our WB looks at the B31 strain (burgdorferi), outside of this strain we are not testing for many of these other pathogenic species. The coinfections testing also leaves much to be desired.

Do you and your doctor have a plan on trying to get rid of the mercury, i.e. chelation or other therapies? Are you familiar with Dr Horowitz? He has a good book that attacks these diseases from multiple angles, tackling heavy metals is a very important one: https://www.amazon.com/Better-Solving-Mystery-Chronic-Disease/dp/1250019400

Many patients with RA diagnosis actually improve on antibiotic therapy, makes me wonder how many have some sort of infectious etiology to their illness. Same deal in regards to MS, but the studies showing improvements on antibiotics with this condition have largely been ignored.

Good luck in your treatments!!!

Do you work for LabCorp? Can you help me understand something? Shouldn't one Borrelia burgdorferi specific band be enough to demonstrate exposure? How would one get Bb specific antibodies without exposure?

Yes, I have Dr. Horowitz's book, I'm working through the chapter on metals.

My doctor suggested IV DMPS chelation as first option, oral DMSA as second, and using binders like modified citrus pectin as third. He said the IV DMSA would be the quickest route. Though I have heard some people say IV is not the best way to go, that its dangerous and can redistribute. I would prefer a natural approach, but he said it would take years that way, considering how my DMSA challenge test was the highest he's ever seen by far. So I haven't made my mind up on how to get rid of the metals yet. Any advice would be appreciated. Thank you.

Thanks for the opinions! The reason I keep asking about the WB results is because my doctor said based on the results it looked like I didn't have Lyme, at least not actual Borrelia burgdorferi, and I have no idea how he could come to that conclusion. I don't believe he is an ILSDA MD, but he does seem to know a lot about Lyme. He is the one who told me to look into Lyme in the first place.

I'll talk to them about starting out slowly with IV chelation, sounds like a good idea in the beginning.

" Shouldn't one Borrelia burgdorferi specific band be enough to demonstrate exposure? How would one get Bb specific antibodies without exposure?"

The simple answer is yes, one band is enough - but the catch is you have to have a doctor that understands the science - which most don't. If a test is responsive on a bacteria specific band, then you have that infection. There's no way a person can have an IND or positive response on one of those bands without first having been exposed to the bacteria. In the case of Lyme, that means that the person has the bacteria in their body, which is the definition of having a bacterial infection.

I would encourage you to take some time and get a second opinion on the chelation. I don't know much about it, although I was supposed to go through it myself and then never actually needed it, but I do know that just because one doctor hasn't ever seen results that high, doesn't mean that another doctor hasn't either. And, that way you can compare what the two say and decide what your path may need to be.