Test results in, is it Lyme?

My wife is suffering with multiple joint pains over last 4 years and we just started with lyme diagnosis after exhausting all the traditional tests.

Symptoms:
Delivery in Dec 2005
Right knee pain in June 2006 and going on
Right Shoulder pain in Sep 2008 and going on
Low back pain in Jan 2010 and going on
Left Ankle pain in July 2010 and going on
Right Eye pain (dry eyes) in June 2010 and going on

There is some pain in other side joints (like Left Knee and shoulder and Right ankle) etc. but not any close to the other side. The pain gets a little better some times but is there most of the times and does not respond to Anti-inflammatory pains. She got steroids and pain relieving injections multiple times with no relief at all.

All the pains came without any injuries.

Multiple MRIs and blood work (Thyroid, Parathyroid, autoimmune panel CRP, ESR, RA CCP they all came normal taken multiple times over the last 4 years. Slight elevation in ESR (30) some times.


Recently we went to a LLMD and he did some tests. The results are

IGenex IFA test: IgM western blot negative but IgG western blot positive

Hunter C3a level normal (431, normal range:0-940)
Hunter C4a level 25704, normal range 0-2840)

Igenx Coinfection tests: -ve

Igenx urine Geneomic-B burgdorferi -ve but Plasmid-B burgdorferi +ve (confirmed by southern dot blot)

The doctor thinks he is 80% sure about Lyme, but she never had any rash or tick byte. She is not outdoor person and did not have chills/fever/illness. We are not sure and trying to do our research..

My wife does not want to go on long time antibiotics yet, she just started Methyl B-12 and Cat's Claw.

Any thoughts are appreciated.

Thanks bucci for the reply.

No, we dont have pets and she does not go near any pets either.

She grew up in India and is here (silicon valley CA)for last 10 years.

She is not diagnosed with depression but she was very -ve, irritable and sleepless early to middle of this year. She turned the corner a bit with family support and sleeps about 3 hours now. Cant fall and stay asleep for long.

No, very minimal travel. Traveled to Dallas last year and on a cruise to Mexico the year before. Also to India about every year.

She started on minimal dose of cats claw, 1 drop 3 times a day 4 days ago and increased to 2 drops 3 times a day yesterday. The plan is to increase cats claw to 10 drops over next few weeks. The eye pain has become a lot more in the last few days but other than that not much change that we can attribute to cats claw.

No, she did not try teasel root or Japanese knotweed, appreciate any info on them so I can do more research.

Right now she cant be in sunlight for more than 5 minutes and cant focus and read. Been to 3 ophthalmologists and they just found the eyes to be severely dry. They see both eyes to be dry but right eye hurts a lot more. We did everything they do for dry eyes: artificial drops, omega 3 fatty acids, warm compress and massage, azasite anti-biotic/anti-inflammatory, restasis, steriod drops and also the punctal plugs. Very minimal help. The right eye pain started when some pasta sause fell on her eye lid (outside), that healed but the pain is persistent since then.

We have been to alternate medicine doctors and looked at adrenal function, heavy metals test, gluten sensitivity, GI tests etc. Her hormones are low (both estrogen and progesterone) and her pains some times get lot better or worse during her periods. That is making us look at hormone imbalance as one of the possible routes or I think there may be a psychological element to it.

Thanks again for listening and chiming in.

Eye drops - I've tried many for my dry eyes and found no help at all until I found Optique 1, a homeopathic eye drop for a wide variety of eye irritations (allergies, dry eyes, infection, etc.). I get it at a local health food store.

I also agree with +Lyme that symptoms + a positive test result = a need for treatment.

Take care,

+Lyme,

Thanks for the support and comments.

I guess the doctor said 80% because of all the controversies on the Lyme, the tests that prove/disprove it. She never had any bite/rash and not being outdoor person and also there are NO CO-INFECTIONS detected. Like you said, he did mention about some 20% not having a bite/rash at all.

We ourselves are still trying to understand the test results and Lyme itself. Our regular doctors brushed if off when we talk about Lyme for her problems. Is it possible to contract it without a tick byte? through other means? Could there be false +ves in test results (Plasmid-B burgdorferi +ve)? She has the joint pain symptoms but there are so many other diseases that can cause these as well. We just dont want to get the wrong treatment to further aggravate the problems.

My wife does not believe in Lyme yet for her problems and does not want to go on _long term_ antibiotics with worry of its side effects on immune system. She is just trying the cat's claw as there does not seem to be much side effects with it. For my part, I am trying to understand this disease better so I can convince her one way or the other. Any other natural treatments that work better for Lyme other than long term abx?

Thanks again for the helpful support. It matters a lot to us.

Veeru

When people talk about 'lyme' they are usually talking about borellia (lyme) and co-infections (bartonella, bartonella like organism, babesia, ehrlichia, etc). Many of these have been shown to be passed by a variety of biting insects, not just ticks. And many of these will not show up on the standard lab tests, since the strains tested are only a small subset of the total strains in existence.

Hi Veeru,

Welcome to the forum! I am sorry your wife is going through all of this. I know that you mentioned her being tested for auto immune diseases and that her ESR was slightly elevated a few times. I am wondering, with the symptoms she is having with her dry eyes, if she has been tested for Sjogren's Syndrome? It is an auto immune disease and I believe that Lyme Disease can set off auto immune diseases in our bodies. Please ask her doctor if she has been tested for this yet.

Who ran these test on her? Was it a Lyme Literate Medical Doctor? I understand why she doesn't want to get on long term antibiotics but she needs to understand the severity of this disease. If she does indeed have Lyme Disease and it goes untreated, she will have alot worse symptoms in the long run. I do not think that cat's claw is enough to erradicate this disease but if she wants to go the natural way to treat, she needs to maybe see a naturopath to get her started on a regimen.

Thanks everyone for the guidance and insights. We really appreciate it. It definitely gives comfort.

Yes, she had a baby in Dec 2005 and all her problems started about 6 months after that. It started with one problem (right knee) and then slowly many other joints started experiencing the problems. All the joint pains started with no injuries and eye pain is the only non-joint issue that she has.

She is 35 year old. Think she would have had couple of sinus infections (sinusitis) over the last 2+ years and they were acute (lasting less than four weeks) and were assumed to be viral infections. She does not have any chronic infection.

I dont know the definition of LLMD, he is not a member of ilads, but owns and does co-practise with two other doctors that are ilads members and one of them (Dr.Christine Green) is known as lyme specialist in the area.

He did do a bunch of tests including co-infections. Elisa/IFA, Western blot (IgM, IgG), Urine Genomic and Plasmid and the labs costed about $1100.


CDC website says Elisa/IFA test has to be positive in almost all lyme cases. That came negative for my wife. The western blot IgG test also came positive for only 2 bands which was good enough for Igenx to conclude the result as positive but the CDC guideline is to have 5 bands positive. The other Igenx test that came +ve for us is the urine plasmid test. Some said to us the urine tests may give false positive.

Did not know about japaneese knotweed and teasel root, but our doctor recommended cats claw with the similar reason that if she has lyme she will get sick in the first few days if she has lyme as the cats claw start killing the bugs out.

I just ordered couple of lyme books to get more familiar about it.

JoAnn, my wife was tested for Lupus and it was negative. I can understand how you feel about the eyes as I see my wife suffering with indoor and outdoor lights. She does not have blurred/double vision atleast not yet. Hope you feel/get better soon.

CajunGirl, she was tested for Sjogrens in blood and tested negative. I am beginning to understand the severity of Lyme and yes want to get it treated if she does really have Lyme. Since she is not able to read, I am doing it for her and have to convince her after all this research and we are also looking at naturopath/homeopaths who can help us.

I first want to conclude she has Lyme. How do we define LLMD? May be I need to go to one of those three doctors in our area mentioned in the insights into lyme disease book.

Once again thanks to all of you and wish you good luck and strength to fight it out.

Regards
Veeru