Wednesday, August 13, 2008

Lyme: A patient I saw today

There she sat before me: fearful and worried. She knew the remicaide prescribed by her rheumatologist wasn't working. She had been chronically ill for more than 10 years. She had seen many doctors. She was besieged by pain which racked her entire being. She had lost weight. Her muscles had atrophied. Now, her brain was clearly failing. She had to take notes of everything that transpired during the visit, because her memory was shot. Her list of symptoms could take up pages if I were to list them all. I had told her I suspected Lyme for several years. She was skeptical. All the usual lab tests were negative or equivocal. Finally, I convinced her to cough up the $200.00 for an IgeneX Lyme WB test. It lit up like a Christmas tree. She had 10/14 IgM bands and met CDC criteria as well. She had recently viewed Under Our Skin and was becoming a believer. At this point it was hard for her to remember most of the film. She is 37 years old. By chance, another Lyme patient was in the office. I asked them both if she could could share her story; she jumped at the opportunity. This 46 year old patient was doing great! I forgot how sick she had been. She had suffered with partial paralysis, severe fibromyalgia, severe cognitive dysfunction, many other symptoms and had been essentially disabled. She had been tossed about by many doctors over many years without finding answers or help. By chance, one of my patients whom she knew casually and seldom saw gave her my name. Today, after one year of treatment she was bright, energetic and sharp as a tack. This was the best she had felt in over ten years. Her only fear was that this all wasn't real or permanent, that she might wake up from a dream to find herself back in the Hell that had been her former life for so many years. The boyfriend who had left her because he thought she was a hypochondriac was back in her life and appropriately remorseful. As she shared her story with the frail and terrified woman who sat before us, I noticed a glimmer of hope light brighten those eyes which had been dim for too long. I know she will be tough. There are many factors which make her case particularly difficult. A and long and bumpy road awaits us. Today we started.

11 comments:

Frosch said...

Wow. I think if she improves with treatment you should publish her case. I have seen a number of case studies of 'seronegative lyme disease'. Make the case for full WB reporting, and the relevance of IgM.

Frosch said...

With her permission of course, but people who are helped usually want their story told.

BamaLori said...

August 13 Blog: Must be fate. My sister sent me this link for my birthday, this woman's story is near identical to mine, except I am suffering...dying...and no one will do the tests because the ins. co. says if the litmus test neg...they stop there... I was diagnosed with Lyme in 1998, never sick before that.
Have a nightmare of a decade of pain and "all in your head" meds.....allergic to all...specialist just want to hand me free samples like cymbalta...lyrica...effexor...I could go on and on....Then I found out about Ecotherapy Read 2007 UK Report PDF file: Executive Summary and full trial details in the other PDF file. I knew this therapy works the best of all in 2005 down in Bacalar Mexico, I did a painful 21 day Eco Therapy Retreat. El Rancho Encantado, Laguna Bacalar MX, had Dr of Oriental Med. to give me acupuncture, detox wraps, meditation techniques...yoga, gi gong...swimming...going all natural foods, no alcohol, no caffeine, limited dairy, no red meat...etc. Mental exercises. Our days under Mallina started at 5am until 9pm.

Please help me I am so sick again and the 1st screening tests still shows neg....they want to lock me up in a mental ward again....never again....worse treatment than serial killers are given....at least they get one hour of fresh air a day! Always being accused of drug seeking behavior...am allergic to nearly all! So tired of being sick and tired....hurt so bad, my family has abandoned me...all thinking I am a druggie or alcoholic because my tongue or left arm or left leg…bite behind right ear in 1998…. goes in and out of paralysis. FDA hung up on me 3 times trying to report adverse reaction hotline on Sample MEDS. VA hung up on me am a veteran of the USN 83-89…Traveled the world.

Wind up in ER every time...Benadryl every time...then awake in the lock up ward....my only complaint/....PAIN...Paralysis...numbness, edema...chronic fatigue...no energy...insomnia severe hot flashes, diagnosed with fibromyalgia only…..etc. Her story is my story and I cry every time I go to a doctor because they keep telling me it is all in my head....I know it is NOT>but had suffered so much I took their “free” samples with hesitancy everytime because I knew if it did not work….Months of Acid Trippy Withdrawal effects were ahead, as well as severe IBS headaches, vomiting, dry heaving, panic attacks, all awaited me….every single time. Shocking sensations all over my body…They put me on Estridol, since UN NECESSARY surgical Menopause….Just last month was legally blind after VA…put me on Foradil for wheezing and lung infection since January 08. Still have it. The meds blew me up to 230lbs…in less than one year now I am down to 160 something because I quit the Nuerotin…now cant eat anything…losing everyday from all orifices. Dry heaving…trying to keep nourishment up anyway I can,,,hard to do without crying from the intense smells…I cover my mouth and run to dry heave some more.

Sorry no short term memory…putting sugar into coffee basket…filling coffee pot water to machine twice….no remembering that I just did that. I always do that first. So frustrated…no one believes me….IF the test say negative…then move on….I say I don’t trust the test because the VA diagnosed me with being pregnant at 42 a month ago….Married for 18 years…NO ORGANS>>>NONE>>>HUSBAND had Vasectomy in 1992….AND I DON’T even have a friggin LIBIDO anymore…hurts to be touched. I beg for your help!

Lori
Birmingham AL 35243
cahaba1@bellsouth.net

BamaLori said...

August 13 Blog: Must be fate. My sister sent me this link for my birthday, this woman's story is near identical to mine, except I am suffering...dying...and no one will do the tests because the ins. co. says if the litmus test neg...they stop there... I was diagnosed with Lyme in 1998, never sick before that.
Have a nightmare of a decade of pain and "all in your head" meds.....allergic to all...specialist just want to hand me free samples like cymbalta...lyrica...effexor...I could go on and on....Then I found out about Ecotherapy Read 2007 UK Report PDF file: Executive Summary and full trial details in the other PDF file. I knew this therapy works the best of all in 2005 down in Bacalar Mexico, I did a painful 21 day Eco Therapy Retreat. El Rancho Encantado, Laguna Bacalar MX, had Dr of Oriental Med. to give me acupuncture, detox wraps, meditation techniques...yoga, gi gong...swimming...going all natural foods, no alcohol, no caffeine, limited dairy, no red meat...etc. Mental exercises. Our days under Mallina started at 5am until 9pm.

Please help me I am so sick again and the 1st screening tests still shows neg....they want to lock me up in a mental ward again....never again....worse treatment than serial killers are given....atleast they get one hour of fresh air a day! Always being accused of drug seeking behavior...am allergic to nearly all! So tired of being sick and tired....hurt so bad, my family has abandoned me...all thinking I am a druggie or alcoholic because my tongue or left arm or left leg…bite behind right ear in 1998…. goes in and out of paralysis. FDA hung up on me 3 times trying to report adverse reaction hotline on Sample MEDS. VA hung up on me am a veteran of the USN 83-89…Travelled the world.

Wind up in ER every time...Benadryl every time...then awake in the lock up ward....my only complaint/....PAIN...Paralysis...numbness, edema...chronic fatigue...no energy...insomnia severe hot flashes, diagnosed with fibromyalgia only…..etc. Her story is my story and I cry every time I go to a doctor because they keep telling me it is all in my head....I know it is NOT>but had suffered so much I took their “free” samples with hesitancy everytime because I knew if it did not work….Months of Acid Trippy Withdrawal effects were ahead, as well as severe IBS headaches, vomiting, dry heaving, panic attacks, all awaited me….every single time. Shocking sensations all over my body…They put me on Estidol, since UN NECESSARY surgical Menopause….Just last month was legally blind after VA…put me on Foradil for wheezing and lung infection since January 08. Still have it. The meds blew me up to 230lbs…in less than one year now I am down to 160 something because I quit the Nuerotin…now cant eat anything…losing everyday from all orifaces. Dry heaving…trying to keep nourishment up anyway I can,,,hard to do without crying from the intense smells…I cover my mouth and run to dry heave some more.

Sorry no short term memory…putting sugar into coffee basket…filling coffee pot water to machine twice….no remembering that I just did that. I always do that first. So frustrated…no one believes me….IF the test say negative…then move on….I say I don’t trust the test because the VA diagnosed me with being pregnant at 42 a month ago….Married for 18 years…NO ORGANS>>>NONE>>>HUSBAND had Vasectomy in 1992….AND I DON’T even have a friggin LIBIDO anymore…hurts to be touched. I beg for your help!

Lori
Birmingham AL 35243
cahaba1@bellsouth.net

dogdoc said...

I hope you can help her. I'm just a veterinarian but I see Lymes dogs that don't clear up with the typical short term Doxycycline that is reccommended. Longer courses and retreatment when disease recurs over and over until you finally get it if you are lucky are the norm I see. Quick question- how does one find a doc like you? Tried ILADS link but was given nonworking numbers for docs and can't search again for a month. My 41 year old husband with a long typical joint, neuro, cognitive, cardiac, ect history just got out of hospital for going in and out of consciousness with paresis. Lp shows 3 positive IgG bands, one positive IgM band, eleavated protien and myelin basic protein. Imaging and 24 hour video EEG unremarkable. Was supposed to have been tested for Lymes with gp previously with knees swollen and painful and again with one of neurologists with trigeminal nerve issues. However, got the records and can't find any ELISA or Western Blot results. Am getting the run around from MCV and neurologists on outside- each keeps telling me I need to talk to the other. MCV guys not excited about Lymes in csf- want bloodwork on outpatient basis next week. Even in the face of extensive neuro involvement- multiple cranial nerves (trigeminal, intermittant optic nueritis like signs, dysphagia), repeated runs of headache/stiff neck/ photophobia, parathesias, cerebellar signs, sensory and motor deficits in arms and legs plus the knee joints, lethargy, memory and concentration issues in a previously high functioning engineer. Do I have the wrong take on this one? Why isn't someone running for the Rocephin while they get some stat bloodwork? Is possible Lymes encephalomyelitis not an important differential here? Maybe its not and its not an emergency either. I know my husband is getting really sick and unable to work and function in day to day life over the last month. I know that is not the intent of this blog, but you docs seem to be doing your best to help people. Thats a lot more than I can say about a lot of these "specialists" I'm dealing with.

dogdoc said...

Oops- forgot to say I'm in Richmond Virginia. Now I'm losing my concentration too.

Lyme report: Montgomery County, MD said...

Mainstream medicine has dug in their heels: Chronic Lyme is not real. This is the IDSA party line. LLMDS are screaming into the void only to hear the echo of their own voices. Yes, neuroborreliosis with encephalopathy is a medical emergency. Harvard and the other Ivory League bastions of wisdom do not get it. "The science is not there," they proclaim. "It is not proven." "It is not evidence based." "Well", as I have been told, "the study from Columbia is intriguing but it is not convincing." While these experts await their "evidence", which may never come, because it is not convenient for drug companies or insurance companies, patients wither into nothingness and die. Lyme is a serious infection. No one disputes that it is the most prevalent vector borne human illness in the country and its incidence is increasing dramatically. Lyme can disseminate throughout the body, especially the nervous system, and cause a devastating multi-system disease which can be fulminant and fatal. The CDC has clearly stated over and over again that their diagnostic protocol was only intended for surveillance purposes. It was never intended to be a diagnostic test. Seronegative Lyme disease has been well documented for over two decades. The CDC clearly states that the diagnosis should not be excluded on the basis of negative serology when clinical grounds suggest otherwise. There are no published protocols for the treatment of fulminant stage 3 Lyme disease. There are only a handful of Lyme literate infections disease specialists in the US. Patients such as bamalori and dogdoc's husband desparately need the help of a Lyme Literate Doctor ASAP. Please buy and watch the documentary DVD "Uder Our Skin." ILADS in Bethesda Maryland has a working phone number and can help you locate a doc. The LDA also has a referral service. Help may be around the corner. Go for it!

BamaLori said...

Thank you all for sharing with me...I am so frustrated that no one believes me...even my own family so I must continue to try and reach out to anyone who will listen. Thanks all...Here is more of my story, as best as I can do for now.
Lori Muir..aka...BamaLori
Below:
Letter from friend of Sister who has suffered as well and his advice:


Lori,
Thanks so much for your quick reply. You have a great sister here and glad that we had the opportunity to discuss my health issues and issues with Doctors from all walks of life. Lyme and its co-infected diseases are one of the most misdiagnosed diseases in the world today. Countless people have horror stories about loss of health, job, friends, and MONEY due to the poor ability for doctors to accurately diagnose. It is often difficult for doctors to nail down since there exists no such MD as a Lyme Specialist, however, a great many Infectious Disease doctors do treat and diagnose Lyme but follow poorly written and inaccurate procedures and protocols from the Infectious Disease Society of America.

As Allison said, it is very important to find a Lyme Literate Medical Doctor. Some of these doctors have patients from all over the US and in some cases other countries. They are very good at what they do and I found my doctor by going to the http://www.ilads.org , Below you will find the number of the contact at ILADS, please ask them for a recommendation of a Lyme Literate MD in your area, preferably one who accepts insurance, treatment is expensive.

Contact Information

Executive Director
Barbara L. Buchman

Address
PO Box 341461
Bethesda, Maryland
20827–1461

Phone
301.263.1080

Fax
301.263.0776

Email
lymedocs@aol.com

Membership


Chairwoman
Judith G. Leventhal, PhD


http://www.ilads.org



I too was diagnosed at one time as having both fibromyalgia and chronic fatigue syndrome. I was told I had arthritis and was given prednisone twice which sent me to the emergency room. Prednisone is contraindicated for Lyme and associated co-infections. Please read all you can about LYME, Babesiosis, Bartonella and all other related co-infections. Odds are that you have more than one type of infection and makes it harder to treat than just Lyme. I am currently taking 2 oral antibiotics, (Mepron suspension, 1 teaspoon twice daily for babesiosis, Zithromax 600mg once daily) and IV Rocephin at 2grams daily for at least 3 months and possibly longer. I had an MRI two days ago to check for Brain White matter (plaque).

I belong to the forum listed below where you can share your experiences with Lyme and ask questions. Many of the people on this site have already gone through what you are going through and are very helpful.

http://health.groups.yahoo.com/group/NorthernVALyme/



Please feel free to write me anytime, anyone in your family. I will help out as best as I can and I hope you start getting relief soon. Hang in there, it will work out in the end.

From: Lori Muir [mailto:cahaba1@bellsouth.net]
Sent: Thursday, August 14, 2008 12:37 PM
To: kcwkelley@aol.com; TINNEY Allison ROSI/I-BNF; Glenn Tinney
Subject: FW: REPLY AUG 13, 1965-2008 Read this please and forward to Craig, all I can do for now.....



THE INTIAL SCREENING in 1998 SHOWED UP NEGATIVE…DR SAID HE WAS still SURE OF IT DUE TO THE CLASSIC SYMPTOMS AND OFF THE CHART LMYPHOCYTE COUNTS…..etc. He said too soon for test to show positive……but diagnosed me with it anyway,,,classic presentation of symptoms he said…Allergic to Tetrocycline…itchy red raised rashes over entire body..he said to stop it and get some benedryl. It worked on the Rash and itching…and no other antibiotics were ordered to replace it. He said…well you’ve probably taken enough of it to work anyway. Went on about my business, got over the fevers and lymph nodes began to shrink…returned to work…increasingly difficult, would cry in pain from PMS and BACK while wearing my heels and suits. Eventually couldn’t take the pain anymore of beating the hot pavement, even though at the time I was the top Honda Salesperson of the YEAR of 26 men….150+ cars…the national average is only 7 per month per salesperson in Honda. My highest month was 22 cars! A record at Tameron to this day. Then I started getting sick…was up to 60k a year at that time. Havent been able to work since 2004, eco therapy 2005 Bacalar MX…went back to school Red Mountain Institute…Straight A’s. Then could not practice my new LMT NMT skills due to pain and chronic fatigue with depression. Still avoided all meds…went to chiropractor…she refused to treat with all my nuero symtoms. She sent me to a Nerologist..Halsey at the Kirklin Clinic…1st drug ever started back since May 2005 was in Fall 2006+/- then only drug was Nuerotin….Then the Edema was horrid….Then started on Lasix and Potassium after being diagnosed at Brookwood Hospital with Venous Stasis…required me to wear leg stockings to keep the blood flowing in my legs was told had to lie flat on my back for rest of life if I wanted to keep my legs. Was devastated…went to a Vein Specialist who told me…after a week or two of Lasix and Potassium with Nurotin…:”You do not have Venous statis don’t know why they would tell you that….He did not see the edema at its worst. He took photos of my legs as well as high graph sonograms, the same as Brookwood did just a couple of weeks later. Says yes Bakers Cyst, but NO venous statis. It was the dam water weight gain…edema…causing venous statis…….shit Im getting pissed stopping this recall now, sorry.


ABOUT MY LYME TESTS:
I Asked Dr. Gewin to run another one about a month ago out of desperation to find out what the hell is making me so sick physically and mentally…all he did was the paper test…initial test, not blood, not western Lyme test, as I had requested due to my time overseas. He said that my insurance would not pay for it when the litmus test…which is very very unreliable…showed neG….no other tests have been ordered. Lab and insurance rules he said. (What to do??? Suffer and find me dead…that’s all I have now.)

Even though this initial screening test has more than a 20% unreliability factor.


Showing false pos, and false Neg…. One recent example:

Hell the VA told me I was pregnant 3 weeks ago, after stopping the new hormone Estidol. Meds affect me in just the opposite way that they are designed to treat others….they all make me worse with the side effects. Still have Lung Infection since January 2008 to this day…even after the excruciation of 9 20mg Prednisone’s, starting with Z pack in Jan 08, then after spinal block Feb 08 under anesthesia…. at L5-S1

Fever and lesions broke out all over lower abdomen…Went back to neurologist, he ordered a blood patch…sent to pain clinic for procedure…when I told him I had been diagnosed with Fibromyalgia…they closed my chart, and said we are sorry we do not treat people here with fibromyalgia…too dangerous he claimed.

Lung infection has never gone away since…Given samples of Avelox…Omicef…lost bowel and urinary control…then Leviaquin…then more VA Avelox… and VA Foradil aerolizer…Abulance had to be sent out, was losing airway after deciding to try the foradil just one more time after I had stopped taking all other meds OTC Samples and Prescriptions because I was wheezing….big mistake…..inhaled it around 10pm by 1.30 am awoke in panic feeling as if my esphogus was falling in on itself. Was psychotic…could not speak…severe panic attack…could not relate to amb. Ppl what I was trying to tell them. They awoke my husband in which I begged them not to, they did not feel I was in any state to deny a 458.00 ambulance ride to any hospital, and there are 3 within 10 min. of here…;just wanted airway checked. O2 Level on finger monitor was 98 percent. Took many deep breaths told myself it is a panic attack…My I am getting O2…I calmed myself somewhat…still not to the point of being able to sleep at all….So the unthinkable happened…they insisted on coming into the house and waking John anyway…he has lost enough sleep over my entire leg every muscle group in Charlie Horse Spasms simultaneously…..

While taking only Valium for IBS and Nuerotin at the time; plus potassium and lasix for extreme edema that started with Nuerotin and ended with a Lithim Toxic Overdose from one pill a day for not even a week or so. I awoke in the psych ward again! OMG./

Thought I had to keep taking the Nuerotin for muscle spasms, twitching muscles, facilitations…severe hot flashes…etc..so kept taking just those for about a year. Never could tolerate Hormone replacement…Nuerotin only thing to lessen severity…so much insomnia due to immediate fire imminating from my head and chest.

Called FDA adverse reaction hotline…hung up on 3 times during tongue paralysis, panic attacks etc..etc…etc....

Thinking it was still from Lyrica withdrawals…had paralysis in left arm for 10-15 min. Still today legs, feet, arms, hands go numb .Still waking every day wheezing and coughing until what few sips of coffee I have I puke and dry heave daily. 1st thing every day…then 4-10 times of cramping cold sweating diareahh…size of kitten stool only…time after time…all before 10 am every day…….cannot eat……..

I try and end up crying because I cannot tolerate the smell….it is overwhelming and sickens me again.

I know that I am dehydrated and malnourished but I am afraid they will put me back in the mental ward if I attempt to seek help for physical symptoms again…they always tell me its all in my head…BS

Sincerely in Need of Help without the fear of another lock up ward!
Lori

jewelrylady said...

I am a chronic lyme patient and I would like to have your thoughts on my case. I have just recently been told that I have to have my gallbladder removed due to chronic inflammation and no contraction during a Hida Scan. How do I get in touch with your office? Please email me.

Lyme report: Montgomery County, MD said...

Gallbaldder infection can be a sign of chronic Lyme. Sometimes it is better to take it out.

I can be reached through Barbara
at ILADS.

If you send you phone number we can call you.

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