posted
Hi everyone, I don't have it in me right now to share my entire long story but I am certain that I have figured out the trigger of my latent lyme disease that I never knew I had and am still trying to get a positive dx because I desparately need treatment. (No LLMD, No Igenex test, No money) But I want others to know of my connection between corticosteroids and scuba diving as a trigger for latent lyme. I was taking small doses (10mg) of prednisone at irregular intervals for continued inflammation in my previously broken ankle. (Am scheduled for ligament surgery in less than 3 wks.)PREDNISONE ACTS AS AN IMMUNE SUPPRESSANT TO REDUCE INFLAMMATION...do NOT TAKE IT!! I Went Scuba Diving for the first time in about 12 years. Similar to HBOT treatment but does not use pure oxygen. Either one can cause a herx reaction went Bb are forced out of hiding from the compression. Within one week of my diving I had severe allergies that I never had in the past. Still did not suspect lyme, no awareness as yet.) Blood work showed positive ANA and high level of eosinophils (now I know that high eosinophils indicate a parasitic infection) and extrevely high CRP which also indicates infectious inflammation when the Sed rate is normal....and many was low so the docs weren't concerned about my inflammatory indicator. Allergy testing showed I was extremely allergic to Rabbits of all things along with nearly every airborne inhailant...but this was in January and nothing was even budding yet. I had no exposure to rabbits and doesn't one of the tests at Igenex use a reactive rabbit serum? not sure, but think there may be a connection. Continued tests covered by my insurance and done by Quest are all negative, but I know that means nothing. BTW, the C6 Lyme test was .37 for those of you that agree any value should be recognized. Since the initial allergy attack where my immune system went totally out of wack, I have had a flare that includes nearly every lyme symptom we know of, including neurological. Since the docs I am able to see per my insurance won't do a clinical dx, I started to self treat with an herbal anti-biotic. 3 or 4 days later (last week) I ended up in ER when a stiff neck rapidly became severe and I went numb from my fingers to my elbows. Followed by vomitting and leg tremors, low blood pressure after I got to ER. ER docs wouldn't listen and said it was a panic attack since my EKG was normal.z (I'll admit I was in a panic by the time I got to ER.) Anyhow, I've stopped my herbs for now because it is too scary without a docs supervision. I am so sorry this got so long. My intent is to warn others of triggering those critters, but looking on the bright side, I am glad to now know what has been the cause of all my minor ailments over the past couple decades. I have always been one to ignore anything other than severe, definately not a hypochondriac.
Within
Posts: 8 | From AZ | Registered: May 2007
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Meeting Dr. Herx -- 46' Under Water Sometimes A Panic Attack Is Much More Than Anxiety
By Virginia T. Sherr, MD
``What could have happened?'' Conrad's shaky, urgent voice demanded answers. ``What is happening to me?'' His phone call to this psychiatrist from Florida sounded desperate. An experienced diver, he had been 46 feet down - a mere recreational depth that was usually easy for him, when, with the suddenness of a blow, bizarre sensations and ideas burst into his mind and body - he felt totally disoriented and disconnected from himself. He was flooded with terror. Trembling, he hurriedly checked hoses and gauges. The fact that everything, including his oxygen supply, was in perfect order did not reassure him. He suddenly felt no self-assurance as the idea occurred to him that he had always been totally inept.
Something disastrous was happening to him, and he couldn't figure it out or control his rising panic. The day's status was ``Blue,'' the water depth 70 feet and calm, the equipment in perfect working order, he had not been worried--yet he suddenly lost all confidence. He needed to surface, which he managed to do correctly with the help of his diving buddy, and now he needed advice. He felt so weird he was sure that he was having a break with reality - thus, the urgent call to me.
Conrad knew me because he previously had sought help for a self-diagnosed depression. Actually, I had never been sure that he was ``depressed-depressed'' or whether he was just lonely-depressed. He was working on a maritime project that had him away from his beloved Boston, where his good friends and family hoped for his quick return. A young marine biologist, he had always been at home in the water. But not that day--now the sea was filled with dread and doom, sensations that he had never experienced before.
I urged him to come back to my office to be tested for tick-borne diseases, since what he was experiencing sounded for all the world like an oxygen-prompted Jarisch-Herxheimer [cytokine] excessive immune system reaction to a kill-off of toxic spirochetes--the bacterial cause of Lyme disease. Drs. Jarisch and Herxheimer were scientists who discovered the J-H phenomenon while working with spirochetal infections at the start of the last century. Lyme disease is a tick-borne illness that, if not recognized and treated promptly, can result in serious nervous system infection and chronic, sub-acute encephalitis.
Prior to Conrad's vacation in Florida, something unusual had occurred. While he was not aware of any tick-bite, he had developed a generalized rash. Referred to his family doctor, he had been told it was ``non-specific'', and was given a Med-Pack of gradually descending doses of prednisone designed to eliminate the itching and spots. I had suggested then that he first undergo testing for tick-borne diseases, but his family doctor had brushed aside any such considerations because there had been neither the popularly expected ``bull's eye rash'' nor flu-like symptoms. These are now known to be present in only perhaps 50% of Lyme victims.
The location of Conrad's home address had alerted me at the onset to consider Lyme disease as another possible cause of his depression. This was because some of the most serious cases of previously unsuspected Lyme encephalopathy that I have ever seen came to me from his geographic area north of Philadelphia, Pennsylvania, USA. Reviewing my intake notes at the time of his rash, I had found Conrad related no physical complaints other than an old ``football injury'' that gave him a knee ache without joint swelling from time to time. With his lack of physical symptoms, I had relaxed about the possibility of his depression being caused by tick-borne diseases. It had seemed to me then that neuro-Lyme disease was only a remote possibility what with his assurances that he felt physically well and was ``only depressed.''
Re-interested in considering all options he hurriedly returned from Florida and I tested him for the antibodies and DNA of tick-borne diseases. Results showed considerable evidence of Lyme disease but not the full CDC diagnostic number of ``bands'' on the Western Blot antibody test. Retesting his blood shortly after initiation of antibiotics clearly substantiated the clinical diagnosis of Lyme disease, however. This timing may have allowed the effectiveness of antibiotics to jump-start his immune system and for the formation of antibodies.
Unfortunately, Conrad's status continued to deteriorate rapidly. This bright young man was struggling to keep up at work, could barely hold on to one task or one thought at a time (loss of short-term memory), and was actually grinding to a halt cognitively. A SPECT brain scan done at Columbia University in NYC revealed ``global heterogeneous hypoperfusion'' revealing vascular inflammation in a pattern typical of the cerebral Lyme disease that was impairing blood flow to his brain tissues.
Informed of the facts, Conrad was at once relieved to know the source of his problems and chagrined that he hadn't told me before about such symptoms of extreme fatigue and migrating muscle and joint pains--symptoms that he considered ``signs of weakness.'' ``It was embarrassing enough to tell someone I was depressed,'' he said. He has cooperated with his antibiotic and herbal treatment regime offered by a physician skilled in the treatment of TBD's and is slowly recovering. His employer has been uniquely considerate of his health problems and has redesigned his job, making it compatible with his overwhelming but temporary disabilities.
Knowledgeable Lyme patients are known to make arrangements for carefully managed scuba diving excursions to reduce their spirochetal burden--air (providing oxygen) under pressure is lethal to the bacteria.
The likelihood of disorienting panic attacks while submerged is predicted to people prior to the dive and therefore reactions are much less frightening. Patients often prefer this therapy to the Hyperbaric Oxygen (HBO) dives that stimulate similar therapeutic experiences. The emotional phenomena that occurred to Conrad and that bears the Herxheimer name bears a strong resemblance to what D. Prater wrote concerning the plight of the poet, R. Marie Rilke in another context:
``In a sudden onset, the hitherto vague feeling of unease had developed into a brutal shock felt to his very marrow, so powerful that he was terrified. He could not explain this covert onslaught but somehow it had sapped the inner confidence, which, even at his worst moments, had always seemed unshakable, and whose absolute and evermore integrated unity with the body had been the wellspring of his art. He felt then a nameless fear that the defection of this body might destroy that unity, that a rift in his nature had been opened which might never be repaired.''
That Conrad will continue to work in marine biology is not in question. But whether he will come to see diving as an ancillary therapeutic tool in his treatment is problematic. At present, he is not ready to chance another underwater meeting with Dr. Herxheimer.
Posts: 258 | From Washington State | Registered: Nov 2005
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posted
Thanks for sharing that story with me. I'm so glad my affects happened post diving and not while underwater. Although it was just as terrifying to have my arms go numb while driving!
I was certain I made the right connections, if only the docs would respect all the research I have done instead of thinking I'm nuts.
I looked at a few of your other posts and saw the stuff on C4 complement.
That was another abnormality that did show up in my bloodwork. I really was trying to keep it short and simple, so didn't mention that or a slew of other results and coinciding symptoms.
I just can't believe that so many docs can look at the lab results and try to tell me nothing is wrong with me, just because the lyme tests are negative according to lab/CDC standards.
My neuro knows I need IV abx if I have neurolyme, but refuses to try because of neg CSF for lyme and MS. And he dismisses all the lyme arthritis since it is not his specialty.
Hoping to see an Infectious Disease doc real soon. Refusing to give up, Laura
Posts: 8 | From AZ | Registered: May 2007
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posted
Hi Von, Unfortunately, not a single LLMD in AZ accepts Medicaid insurance. I am a single Mom college student with no money to pay out of pocket for Igenex or docs.
But, when I searched the names of the Infectious docs on my provider list with the additional keyword "lyme" I found one that co-authored a research study that was published in the Amer. Journal of Med. in 2003. Had to do with retesting C6 levels to judge antibiotic therapy.
So I still need my PCP to refer, but am hopeful I may have good news to share with many fellow lymies here in AZ.
Thanks again, Laura
Posts: 8 | From AZ | Registered: May 2007
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posted
Born, You are a good researcher. You go girl! I think you are on the right track, and if you are not you will know it, and keep looking till you figure it out. You are clearly tenatious and resourseful.
(and I wish I could spell or have spell check)
The people who I worry about the most are the ones that don't know that they are their own best advocate.
I don't know where I would be today if there a were no internet or I didn't have the sense to use it.
We are here for you Born.
Von
Posts: 258 | From Washington State | Registered: Nov 2005
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posted
I went on a diving trip last month. I believe I had some herxing causing me to miss several dives. I also had a bart rash outbreak while on the vacation. It took a good two weeks to recover from the trip. I had no incidents while diving. Would I go diving again? you bet
Posts: 160 | From texas | Registered: Oct 2005
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posted
Von. I totally agree about the aid of Internet. I believe I would be in a psych ward by now if I didn't know how to use it!and looking like this It took awhile, but even though I'm not being treated yet, I feel so much better mentally.
RE_ diving again, I will too, but I plan to wait until my immune system is better, along with everything else. I think it could be good for us, with caution on depth, etc. Some people go down with a more potent Oxygen mixture(less nitrogen)
Posts: 8 | From AZ | Registered: May 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Yeah, been there done that. My first open water dive they took me down to 65 and then left me behind in a fast current.
I almost vomited in my reg and came close to being a sky rocket.
Thought it was a panic attack at the time, but couldn't understand it, becuase I'm not like that.
Know better now. Thanks for sharing.
bejoy
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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It took awhile, but even though I'm not being treated yet, I feel so much better mentally.
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