Thursday, August 15, 2013

Lyme in Atlanta

This patient is from Georgia. He used to a lot of outdoor work in his garden. He was also a frequent hiker on the Appalachian. He had a long history of tick bites which he thought were inconsequential. In 2007 he developed disabling pains of his arms and legs to the point that he was unable to walk.  He saw a neurologist who performed various tests. An EMG showed a severe polyneuropathy, motor and sensory. He experienced numbness and tingling. He experienced difficulty swallowing; episodes during which he was unable to speak and episodes of muscle paralysis. His muscles would suddenly go into acute spasms associated with myoclonic jerking and fasciculations. He went on to develop a host of other symptoms. Some of these included: emotional labiality, a loss of balance, unremitting tinnitus, extreme sensitivity to both light and sound. His skin became extremely sensitive to touch and he experienced a heightened sense of pain whenever his skin touched something. In fact, he has not had a repeat EMG because of intolerable pain.

He saw a variety of neurologist who ordered a multiplicity of other tests including MRI scans and EEGS which were of no benefit. After some time, he was not longer to walk progressing from cane to wheelchair.

Joint pain became prominent. He experienced pain and swelling in all his small joints, medium joints and large joints. He also developed pain in his cervical and lumbar spine areas.

On further questioning symptoms now include: fatigue, night sweats, air hunger, brain fog, trouble articulating words, forgetfulness, inattention, drooping of one side of his face among many others.

Doctors claim there is no Lyme in Georgia.

Let me take a step back. In 2009 his wife suspected he had Lyme disease. She was able to find a doctor who, over a course of years, treated him with antimicrobials including: Minocin, Zithromax, Flagyl and Malarone. The treatment was somewhat effective. The same symptoms were present but had lessened, maybe 30%.

Six months ago a new doctor, taking the place of the previous one refused to prescribe any more antibiotics. Over this period of time symptoms worsened dramatically.

When he saw me there was a desperation to find a doctor who would continue to prescribe medications.

The diagnosis of Lyme disease had been empiric. Lab tests had always been negative.

When I examined him he appeared chronically ill. Most notable, when I asked him to squeeze my hands to test his strength -- always a part of my exam --  his hands became locked in a spasm with every increasing pressure applied to my hands. My hands were stuck and beginning to hurt.  I did not know this is possible. I had to call my assistant to help pry open his fingers so I could remove mine.

He had never been treated with IV antibiotics and I felt this should be tried right out of the gate. So I ordered some lab tests.

A Lyme WB from Stony Brook found only a 64 IgM band and a 58 IgG band. This was frustrating. A WB sent to IgeneX found only a 58 IgM band and a 41 IgG band. I hit pay dirt with labs sent to Labcorp. The C6 peptide ELISA was 1.34 -- clearly positive for Lyme. In addition, serology for Rocky Mountain Spotted Fever was also positive.

My initial impressions included: Lyme, Babesia, Rickettsia organism. I ordered: Rocephin, Doxycycline, IVIG, Tindamax and Coartem.

I saw him at follow-up a month later. He had only taken the doxy, Tindamax and Coartem. The IV Rocephin and IVIG had not been approved. Nonetheless, he reported feeling significantly better. Surprisingly better.

Another test showed an immune deficiency. His total IgG, and subclasses 1 and 3 were low as was his IgM.

Additional comments:

I diagnosed CIDP clinically. He had pain, weakness, marked sensory/ motor abnormalities and absent deep tendon reflexes. The neurologists would not consider the diagnosis without another EMG which he is unable to have. Of note, he has a complete absence of reflexes: this is something neurologist love to see to make this diagnosis.

If his local doctors were not buying the CIDP diagnosis there was clear evidence of an immunoglobulin deficiency typical of Common Variable Immunodeficiency Syndrome. This diagnosis was also not made back home. Generally with this diagnosis it is possible to have subcutaneous Ig approved.

He has now had two sessions in my hyperbaric chamber. He is doing surprisingly well.

This case underscores the importance of treating clinical babesiosis. In this case I went straight for the big gun: Coartem. This seems to have paid off.

The positive test for RMSF might reflex some cross-reacting Rickettsia, less virulent than RMSF. He had never been prescribed doxycycline previously. The addition of this medicine may have been important. Don't forget to take doxy at some point during therapy.

I am hoping hyperbaric oxygen therapy will do for him what I thought IVIG would.

A key lesson in this case is: don't forget to order the C6 peptide. 






4 comments:

MA said...

I am also from Georgia, outside of Atlanta.

I have a very similar story.

I have made great progress with HBOT over the last year and half.

Thank you for posting this!!

JT said...

I'm fairly new to Lyme and co-infections. I live 30 mile north of Boston... where physicians are known (by any vendor that sells to them) as "knowing everything". Having been dx with Fibromyalgia and other overlapping conditions many years ago, I've not bothered with most dos. I've worked in hospitals for many years. Few physicians have the time or inclination to "listen" to patients.IMHO, they days are long gone where patients have blind trust in physicians. Those that do,may/will suffer dire consequences.

DEB degol-fraundorfer said...

My Mom got bit in July, dignosed after it took her mind and body, as having lymes. She was in the hospital 3 wks, then out 1 week and back in 3 weeks,for the next 3 months, Had 2 rounds on iv antibotics, after the first oral ones which was arothomisin, not Doxy. She died in December,a well bodied Woman, till she was bitten. Now My Father had to have his knee drained 2 times in a week, and so they tested it, and unbelievable, he has lymes. I need to kind someone to treat him, so I do not lose both my Parents to Lymes. There has to be some way to get to these Drs, what is going on.

Don Z said...

If your sick of toxic antibiotics to treat your lyme;

http://lymediseaseresource.com/wordpress/happy-ending-for-years-of-suffering-with-chronic-lyme-disease-and-morgellons/