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Late diagnosis, CD-57 of 23, and doc wants to do herbal remedies

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Posted 11/2/2014 4:24 AM (GMT 0)
In 2008, I found a tick on the nape of my neck. Within 1-2 weeks later, I couldn't get out of bed. My neck was so stiff, I feared I had meningitis. I had unearthly fatigue, muscle aches, disorientation, and other symptoms I no longer recall. When I finally crawled to my internist, she tested me for Lyme (Western Blot was negative), mono (+), Parvo B19 (+), etc. Her conclusion was that it was most likely a virus and would run its course. It took me a month to be out of bed for longer than 3 hours at a time. Six years later, my days are separated between "functional" and "nonfunctional."

I had what appeared to be a rheumatoid flare recently and went to my alternative MD for blood work. I had juvenile RA, so adult RA hasn't been a shock. In doing the labs, my MD said he was going to do a CD-57 to test for Lyme. All of my blood work came back great (as always, even though I'm dying inside!), except the CD-57 Absolute value was 23. From what I've read, that is low enough to not only conclude Lyme, but also co-infections. My Dr. said I could do an IGeneX Western Blot to get a firm confirmation if I felt it necessary, but he was reasonably confident I have chronic Lyme. My stance is that I don't want to spend money on a basic confirmation, when I can parlay that money into a Co-infection Panel test. Am I wrong in thinking that a CD-57 level of 23 is proof enough that it's Lyme, since only chronic Lyme has been recognized as suppressing those markers?

My Dr. seemed unworried that I'm a 42 year old woman who has been robbed of my life. I LOOK healthy, but it couldn't be further from the truth. I maintain a grain-free, dairy-free, organic diet of unprocessed foods...And I take a lot of high quality supplements. I was shocked when my Dr just suggested 3 more herbal supplements to "strengthen my immune system." Uh, no. I haven't had a contagious illness in 3 years, so I am perplexed as to why he thinks adding more supplements will eradicate a stealth infection that has been eating away at me, even though my immune system is performing adequately. I cannot improve upon my lifestyle choices enough to make a dent, because I already live as healthily as possible (absent living in a bubble). It is obvious that he is against using antibiotics. My fingers are warping and some joints have enlarged to the point that I can't twist off lids, etc. I'm not going to continue doing the same holistic routine that has proven itself a failure.

My question is whether any of you found it valuable to do the extended microbe panel at IGeneX? I'm surprised that more Drs aren't wanting it done, since antibiotic choice will vary depending on the bacteria present. I will also most likely do a mycoplasma (etc.) panel at ClonGen, in case I do have a true RA case caused by other bacteria. If there are any RA persons on here, I'd appreciate hearing about your experiences too.
Thanks!
Posted 11/2/2014 4:51 AM (GMT 0)
I'm waiting to get my co-infection panel back now, but I won't get it back til Nov. 25th at my next Dr. appt.

Before antibiotics with something that may have overrun your system as bad as Chronic Lyme, most docs want to prepare you with some herbal tinctures.

Did you ask him if they were specific in starting to suppress the Lyme, or if he's willing to put you on ABX after you take the herbs for a while?

Even a Labcorp test could give him an idea if you have Lyme or the CD-57 is low for some other reason, even if the criteria aren't met for the CDC.

A lot of times docs won't even worry about testing for co-infections, they'll just address the Lyme,

and then see if you're noticing new symptoms once the Lyme is suppressed, after several months of Lyme ABX.

Then they'll make a clinical diagnosis of those based on those too, since that's the typical pattern and the co-infections labs are as unreliable as Lyme testing.

But getting a clearer view if there is the possibility of Lyme is the main concern, since it is the one that causes the most overall deterioration, and makes all the other co-infections harder to deal with.

Like Babesia is probably going to go unnoticed in most cases, but if it starts flaring up when you have Lyme it could be fatal.

Bart symptoms can look like major psychiatric issues when you have Lyme as its sidekick.

Chlamydia Pneumonia can overrun the system when its coupled with Lyme, and, along with a Vitamin D deficiency, caused by Lyme, can cause a type of Lyme induced MS.

Others will be more debilitating too, but those are the 3 I know about.
Posted 11/2/2014 8:07 PM (GMT 0)
Unfortunately my Dr believes antibiotics disrupt gut flora and that they are unnecessary if your immune system is optimized. He doesn't use antibiotics in Lyme cases, even if patients are on coordinating probiotics. Personally, I don't think chronic Lyme can be eradicated without antibiotics/anti-fungals if the infection is severe enough.

My Dr said that he is confident I have Lyme based on the history of symptoms and low CD-57, and I could pay for another Western Blot if I chose to, but he didn't think it was necessary. I've had 200+ labs over the last 6 years, so I'd rather not waste any more time or money.

Isn't IGeneX supposed to be the most reliable with microbial testing? I'd rather pay for a co-infection panel, then that will confirm or exclude what I have. If it all comes back negative, then it's back to square one, but I don't feel another basic test would serve much purpose---especially since my Dr has made the assessment of Lyme.

For whatever reason, the last month has been a worsening of symptoms. Most days, I would rather be dead. At this point, I don't care about CDC criteria and jumping through their hoops. My insurance is now so worthless since the healthcare overall, I pay for most things out of pocket anyway. Dying would certainly be cheaper!
Posted 11/2/2014 8:16 PM (GMT 0)
Hi Jennifer,
Welcome to our community!

While it's your choice whether you wish to use abx or not, please don't let it be because of a misinformed choice. I was infected for 40+ years and healed with herbs only. I had a LLMD tell me that I likely had all the tick-borne infections due to the number of symptoms that I had and their severity. So don't be fooled, herbs are more than powerful enough to treat these infections...... but, like I said, the choice is yours and yours alone. If you wish to use abx, but your doc won't, then we can likely help you find a doctor that will honor your wishes.

None of the tests for these infections is accurate enough to confirm whether or not you have an infection. You and your doctor have to go over your symptoms and hopefully the testing will show that you have reason to suspect certain infections. Many times once someone starts treating one or two infections, the symptoms of the other infections become much more apparent.
Posted 11/6/2014 12:42 AM (GMT 0)
Hi Traveler. I didn't mean to give the impression that I don't value homeopathic options. On the contrary, I have always utilized natural remedies vs. Big Pharma. (Which is why I see an integrative MD.)

In my case, I have been using a variety of herbal supplements for years, with no real improvement. In fact, my health is rapidly declining with neuro-cognitive involvement. The 3 herbals my Dr recently recommended adding are ones I've tried over the years to no avail. Now that I have a clinical diagnosis of Lyme, I prefer to attempt antibiotics, but will continue my herbals as complimentary therapy.

It's great to hear that your issues were able to be resolved without the addition of prescription drugs. Ideally, that's the happy ending I wish we all could have.
Posted 11/6/2014 2:30 AM (GMT 0)
Hi Jennifer—

Good comments have already been made —just a few more thoughts:

Is your MD lyme literate? I highly recommend that you see a specialist who has significant experience treating lyme. While I am so sorry you are experiencing the health issues and frustration, I think your history is suspect and you are certainly going down the right path.

Regarding your doc: a slow and measured approach is very good—lyme treatment can be very intense when you start killing microbes and it can very easily and swiftly overwhelm a sick body. Think of it like chemo—as fast as you're killing the bad stuff you have to get it removed from the body so your detoxing has to be at maximum function. Many people get tested for DNA mutations to detect any detoxing problems with methylation so you might want to look into that. But back to your doc, when someone says their doc is unworried that you are so ill, I'd say go find someone who is…

You are awesome for maintaining such a healthy lifestyle and it is likely a main reason you have those sporadic "functional" days. And that will help your treatment—whatever plan you're on—significantly. So you have that going for you.

Also, I think you'll find many lyme specialists will pursue treatment without IGeneX tests but most insurance companies respect a standard protocol, which currently follows a two-tiered testing methodology (that we all here find problematic) but mandatory result is a "CDC-positive" lyme test (which is also problematic but is what it is). So that might be a helpful barometer for your testing, whether or not you need a positive result for insurance coverage. The antibiotic route is VERY expensive and often not covered without the positive tests.

Additionally, my LLMD and quite a few others, I understand, are no longer correlating low CD57 levels with a lyme diagnosis, but rather use it in concert with clinical diagnosis and other testing to support a diagnosis.

My LLMD first treated to get my viral load down, then treated to address some GI issues, and only when those two issues were more in control (because lyme treatment relies on a functioning immune system) did she start treatment for lyme, Bartonella and Babesia with herbs. I had some reaction but was at highest doses I could take for about 6 months and since I've likely gone untreated for over 15 yrs, she recommended IV antibiotics, which I just started and I will also continue taking the herbals. But you will find on this forum many different approaches and I'm sure others will chime in who, like Traveler, have had a lot of success with herbs.

Regarding the co-infections, some LLMDs will treat one or two simultaneously but it's uncommon to treat more than that—it's just too overwhelming to a sick body. I had a positive Bartonella test and a negative Babesia test, although Babesia symptoms are most dominant of all three. Once I get into the IV treatment a little more (titrating up slowly) then I'll start taking malarone for the Babesia. Won't start treating the Bartonella until one or both of these are under control - a ways out. My LLMD thinks I also likely have more co-infections but like you, I'm all tested out and she can't treat all of it right now so I'm not going to worry about it all now.

I'm sorry—I can't speak to RA. But hope this is helpful.

-p

Post Edited (Pirouette) : 11/5/2014 7:34:28 PM (GMT-7)

Posted 11/6/2014 2:32 AM (GMT 0)
Antibiotics are what saved me after trying Traditional Chinese Medicine, Cowden, and Buhner protocols. Antibiotics are what brought me around. After several years of abx, I am trying wean off them using the Byron White Formulas. Hopefully, I will have things under control.
Posted 11/6/2014 2:35 AM (GMT 0)
Another thought—

If you do opt for additional testing for lyme, many LLMDs do what mine did and gave me supplements to provoke the infection, or to create a response from my immune system. The IgeneX and like tests detect antibodies but if your immune system is weak or busy (RA) it may need a little help in order to get a more accurate test result.

-p
Posted 11/6/2014 4:52 PM (GMT 0)

JenniferW said...
Hi Traveler. I didn't mean to give the impression that I don't value homeopathic options. On the contrary, I have always utilized natural remedies vs. Big Pharma. (Which is why I see an integrative MD.)

In my case, I have been using a variety of herbal supplements for years, with no real improvement. In fact, my health is rapidly declining with neuro-cognitive involvement. The 3 herbals my Dr recently recommended adding are ones I've tried over the years to no avail. Now that I have a clinical diagnosis of Lyme, I prefer to attempt antibiotics, but will continue my herbals as complimentary therapy.

It's great to hear that your issues were able to be resolved without the addition of prescription drugs. Ideally, that's the happy ending I wish we all could have.

Hi Jennifer,
I do hope I didn't offend you - that was not my intention!! I just don't want people making choices when they don't have the correct information! Herbs and natural meds are more than strong enough to combat even long standing chronic Lyme, but they aren't for everyone. Honestly, my only point was that it's your choice, but know that you have a choice!!

There are some here that use strictly Pharma to treat, and some that use strictly herbal/natural for treatments, but most use a combination of both. The main thing we are concerned about here is that it's your choice, that you use things in a safe manner and that you are making progress in your healing.

Also, please understand that the testing for Lyme and for many of the co-infections is not all that good. I believe many LLMD's will still go by symptoms mainly and symptom reaction when starting the therapy for each infection.

Above all, you will find it much, much easier to work with a doctor that has been trained by ILADS to reach your full healing potential. Knowing which med or herb to use when can be key to a person's healing.
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