posted
I am posting to see if what I am going through is normal with Lyme if there is such a thing as normal with this terrible disease.
I believe I became infected with Lyme about 8 years ago and only within the last 2 months started treatment with a LLMD.
Over that 8 year period I suffered from many symptoms which prompted me to visit my primary care physician and specialists numerous times along with multiple MRI's of my head and neck. General fatigue, brain fog, lack of motivation, stiff cracking neck, back pain, loss of libido, bells palsy among other problems. I was treated for low testosterone, sleep apnea, depression, sinus problems, visited chiropractors all to no avail.
I am a married man in my early thirties and this all has prevented me from living life, having children because I did not know what was wrong with me and I honestly believed something was killing me. I continue to work full time and by the time I get home am exhausted to the point where I do not do much of anything besides lay on the couch. My wife believed I was crazy until recently when I began seeing my LLMD and she sat in on the appointment. My marriage is strained to say the least and all thanks to lyme.
My questions are: During the 8 year period I was tested by non LLMD using ELISA and tested negative for lyme. I was tested recently by my LLMD using quest with Western Blot and came up both IGG and IGM positive. I believe it was IGG 7 bands (18,23,39,41,45,58,66) and IGM 2 bands (23,41). Does this mean definitively that I have lyme disease? The reason I ask is because since I began my treatment I have had little to no Herx which I take as a bad sign. I have taken 6 weeks tetracycline 750mg x 3 per day, now I am on a 6 week course of Moxatag 750mg x 2 and Biaxin 500mg x 2 per day. I would say the only thing I have noticed is that I had some knee pain which I have never had and it seems like my lymph nodes are generally more swollen. Other than that I am my tired in pain self.
Is there anything anyone would recommend? Is my LLMD being too conservative here? Do I just need to be more patient? Sorry for the long winded post, any feedback would be appreciated.
Posts: 7 | From Worcester, Ma | Registered: Oct 2009
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Hi: -tetracycline is not a very effective antibiotic for Lyme (other drugs in the tetracycline class ARE, however) -nothing is 'textbook' in Lyme. Not everyone has a really obvious herx. The first time I treated it, I just got incrementally better rather than having an obvious herxheimer reaction. -if you are sick enough, it's also possible that you are so immune-suppressed (which looks very strangely in Lyme- we are immune suppressed but don't necessarily come down with every cold and flu around, for example) that you're not mounting much of an immune response to the dead bacteria. There's one strange theory floating around now that bartonella co-infection, which is very common, does a lot of the immune suppression- that particular theory is just one doctor's claim at the moment. Anyway, it's not uncommon to have little herx and there are probably different reasons for it.
If you have that many bands positive I'm sure there's not question about you being infected with this disease. Some of those bands are very specific for only Lyme bacteria and nothing else.
New knee pain and lymph nodes being swollen sounds very much like my herxes to me- relatively mild. I know it's hard to tell if it's that or just a new symptom, but lymph node swelling is exactly what I would expect to see from what you're doing.
I don't know much about Moxatag. Two antibiotics at a time is usually a good thing. It sounds like you're tolerating them. Biaxin makes me tired at first when I start on it (I've rotated it into my treatment several times).
Have you been tested for co-infections yet? That might be helpful. Also, it simply can take a few months before you see any major changes in your symptoms.
What I"d recommend is to read the book The Lyme Disease Solution by Dr. S. He explains a LOT of the immune system basics in a fairly easy-to-understand format, talks about the most common antibiotics and the combinations that LLMD's often use, and he suggests a lot of supportive therapy, such as an anti-inflammatory diet, certain mineral and amino acid supplements, herbal treatments of various sorts, and other pharmaceuticals that may help with symptoms and may help boost the effectiveness of primary treatment.
It sounds like you've looked at some of this already, but check out Burrascano's Lyme treatment suggestions at www.ilads.org and the official ILADS guidelines also.
My symptoms have been mild the whole time, mainly intermittent pain and fatigue and some emotional ups and downs.
My first round of antibiotics, 3 months of Ceftin from my GP at too low a dose, I never noticed what I would call a herx, but I did perceive some improvement toward the end of the three months.
Two days later, all my symptoms were back.
I have taken doxycycline for more than 2 months now. The third day I was on it, I had a bad (for me) herx.
I had pain everywhere, including joints and muscles that had not bothered me before, and hurt too much to get out of bed for 3 days, then felt bad but functional for another week, then got back to my mild symptoms.
I am sure that was a herx. That was on the lower dose of doxy I started with for the first month (200mg/day). When I doubled it the next month, I did not have another bad herx like that.
So it is possible to herx sometimes and not others, and to have a different response to a different drug.
Three months was not long enough for my first round of drugs to help me, so I think it is going to take several months more than that to know if my second drug is going to work.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Wow!!! I've never heard of anyone having such a highly positive QUEST WB!!!! My gosh! I don't see any way that you would not have lyme with those results!!
For most Lyme patients using Quest for testing, it comes back NEGATIVE. They don't even test for all possible bands for gosh sakes!
Soooo.... you have Lyme.
Herxing? Not everyone will herx. If you don't herx or it is mild, count your blessings!!
Also it's possible that you will herx later. I didnt' do much herxing for the first few months... at least it was milder in the beginning.
Hang in there and click on the links posted above...and be sure to buy the book!!
PS.. Don't be a stranger! You can learn a lot here!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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