I am 32 years old and 1.5 years ago, I began to get very sick. It was 2009 May, 1 yr after having my daughter. My hair began to fall out and I was having fatigue, bladder problems, and excessive groin sweating, which I later found was yeast.
In August 09, I got the flu and felt like I never recovered. I was so tired, getting severe leg muscle aches, slurring speech sometimes, misusing words sometimes. My dr. found I tested positive for test indicating CREST Scleroderma and an elevated ANA. I'd had Reynaud's for 12 years,so this was frightening to see. My father has a mild Scleroderma. My mom has had a pos. Ana for 15 yrs and severe spinal stenosis.
In December, I developed Esophaegal Spasms (the E from Crest, so I now had the R and E symtoms.
In the spring, I began to find I had strange skin sensations. I found out about Antibiotic Protocol and the Road Back Foundation and decided this would be my action.
In March, I had a sinus infection and my Doc. put me on Augmentin, which I'd taken before with no issues. I broke out in hives for about a 40 days after that. They didn't go away, even with a steroid pack. In May, after meeting with Dr. F in Scottsdale, my blood work indicated one positve Lyme test, and 2 negative. He swears I don't have Lyme and its a different infectious illness that causes Scleroderma.
I also found out I have 4 herniated discs and a small Syrinx on my spinal cord, an ovarian cyst.
So, here is my question. I am treating with Minocyline, but would like to know exactly what I am dealing with. My Dr. is very knowledgable, but the tests he offers are not covered by insurance. He seems convinced of what I have because he discovered it, or something.
But, I'd like to know for sure and I am unsure of my next step, financially or otherwise. Does this sound like Lyme? I never had a tick bite and grew up in Ca. My mom grew up in NYC, NJ and Florida.
Posted by BoxerMom (Member # 25251) on :
Your symptoms are indicative of Lyme and co-infections.
What was your positive test? The ELISA? Western Blot? By which lab?
Lyme tests are frequently false negative (negative result although the patient has Lyme). They are also frequently seronegative (no antibodies in the blood as the microbes are largely in the organs and tissues and the immune system has become unresponsive).
In the presence of symptoms, negative tests are meaningless. Positive tests are very meaningful, and you've had one.
Doctors and researchers would love to link a single causative agent to complex diseases like Scleroderma, but it is likely that won't happen.
Current research is pointing to a combination of factors that lead to autoimmune illnesses. Multiple infections, environmental exposures, and chronic inflammation can increase ANA and activate genes for autoimmunity.
Often, the course of degenerative diseases starts with a single stressor (like pregnancy and childbirth).
I don't know who Dr. F is. Maybe someone on this board will have an opinion. It is irresponisible as a physician to not definitively rule out Lyme and co-infections in a case like yours.
I know the out-of-network labs are expensive, but they are worth it. Your doc MUST know how to interpret them. Many of us are seronegative, but still have Lyme and co-infections.
You can do an antibiotic challenge to try to get a positive result. You can also take enough antibiotic to induce a herx (die-off). That would indicate that you have Lyme.
Please don't give up. I lost my Dad to Scleroderma. Four years later, I was diagnosed with Lyme. In hindsight, all his symptoms over many years pointed to Lyme. I wish I'd known about Lyme much earlier.
Best of luck. Regaining your health will be the best thing you ever did.
Posted by nonnie26 (Member # 27952) on :
Thanks for your reply. I am not sure which Lyme test, just the standard one I believe that dr's offices order? I am going to call them and have copies sent to me. I was planning on doing Igenix,too, but my dr. said it would be a waste of $$.
I have noticed herxing on antibiotics, but my symptoms are identical to taking anti-parasite herbs and diflucan die off. It's always TMJ and muscle aches and fatigue.
Many of the folks over at the Roadback forums have lyme and scleroderma--that forum is what lead me here. I guess I am just feeling lost as to what next. I see a million doctors and without a definitive diagnosis, I feel a little lost as to what next and they all seem to think I am crazy.
I have been treating with mino since May and and anti-parasite herbs since Sept. with lots of herxing. My esophagus, reynauds, and skin have all been better, so that makes me think something is happening.
But, I am dealing systemic yeast, which is a huge challenge...and I still have a lot of unanswered questions and there are no LLMDs here in AZ.
Posted by BoxerMom (Member # 25251) on :
You need an LLMD. Fire the million doctors who think you are crazy. They are uninformed and arrogant and not worth your time and money.
Travel to an LLMD. Many will see you infrequently and do antibiotic changes through phone consults if necessary.
Post in Seeking a Doctor here on Lymenet. Ask by city and state.
It is excellent news that you are both herxing and improving on your current protocol. That is exactly what you want out of treatment.
Igenex is a good lab for Lyme testing. Again, your doc must know how to interpret the results.
To completely recover, you MUST address all of your infections. Most of us have the three Bs: Borrelia (Lyme), Bartonella and Babesia.
We also have yeast, parasites and viruses. It is VITAL to get comprehensive treatment for all of your infections! That is why you need an LLMD.
Many patients travel to their LLMDs. It is worth it.