Late disseminated Lyme/Tertiary Lyme w/ severe neuro and endocrine symptoms.

[sujoneslyme]

I am a Boston native who moved to NM 10 years ago, 5 years after becoming ill with what, in retrospect, was probably Lyme disease from a tick bite.  I was misdiagnosed for past 15 years. Now I have severe Neuro-cognitive problems and neurotransmitter imbalances, as well as adrenal (near) failure, IC, arthritis, and a host of other symptoms consistent with late disseminated (Tertiary) Lyme.

There is so much controversy, and no doctors in New Mexico who have much knowledge or expertise in the neurologic manifestations of Lyme.  I am wondering where to go for treatment.  I heard that there may be a doctor at the Naples Cleveland Clinic Neurology department that knows this stuff, however, I don’t know where to go for all the endocrine and other symptoms.  

I have had a Western Blot and ELISA, as well as other testing.

Can you offer any concrete suggestions?  (Other than call the Lyme Association because they think my case is beyond just Lyme.)

Please - I need to be seen soon - I am bedridden in New Mexico, and have lost 15 years of my life to this illness.

[CCF-Neuro-M.D.-PW]

The Cleveland Clinic has sold the Naples facility but still operates the Cleveland Clinic Florida at Weston

Lyme disease can be a dificult disease to diagnose, particulalry with laboratorytests (you don't mention whether the results were positive or not). I cannot give you alternative diagnosis just based on teh above information but agree that without an accurate diagnosis the problems are unlikely to go away.

I personally don't know of Lyme experts in this area.

Allen C. Steere wrote a review on Lyme disease for the biggest medical journal, the new england journal of medicine a few years ago. He is a professor of rheumatology at Harvard in Boston (Mass General Hospital), perhaps you could stay with relatives and see him?

Good luck

[Luke 339]

Check this site, they have been extremely helpful to me with my supposed Lyme Disease also.

http://flash.lymenet.org/scripts/ultimatebb.cgi?

They will point you in the right direction I am sure.

-Luke

[DaveWill]

I live outside of Philadelphia, and in February 2006 I was diagnosed with late stage Lyme. I had swelling in my knee and ankle, general fatigue and my blood test was positive for lyme.

I have now been on Doxycycline for about 3 months, and I have responded quite well.  Almost all of the swelling is gone, and my energy levels have greatly improved.  I would estimate that I am about 85% "cured", but I still have some lingering symptoms. I plan on staying on the Doxycycline (200 mg/per day) for at least another month. My questions:

1) I have a small swollen area in my right palm, about an inch beneath my ring finger, maybe a half inch in diameter.  No pain, but annoying. It has stayed the same since my treatment started. Are some types of swelling resistent to the antibiotic? Is there anything else I can try to reduce this swollen spot?

2) My energy level has greatly improved, but at times, I still feel overcome by fatigue. I am not sure if this is due to my inactivity caused by the lyme, or if it is the lingering lyme itself.  Is this normal?

3) I have read about the lingering symptoms of lyme sometimes found in patients with late stage lyme. Is my course of recovery typical to these types of cases? My guess is that I was probably bitten sometime in the summer of 2005, but was not treated until the winter of 2006. The swelling in my other joints (knee, ankle, elbow) is now all gone.  It is only lingering in my right palm.

4) Can I stop the treatment if I still have some small minor swelling, like what is lingering in my palm? Does the swelling indicate that the bacteria is still likely present?

Thank you for your opinion and this service.  This is a condition that is difficult to get good information regarding.