(After trips to general practitioners, infectious disease specialists and psychiatrists don’t produce results, Carol hits the ME/CFS specialist circuit. Check out more of Carol’s “A Chronic Fatigue Syndrome Chronicle” here.)
Part Three: The Odyssey, Chapter 3
Dr. Richard Podell
Dr. Richard Podell, Summit, NJ, an MD but also “a recognized leader among Complementary, Alternative, Holistic, and Integrative Medicine Doctors”, according to his website (http://www.drpodell.org)
When I Googled my symptoms, I found information about Chronic Fatigue Syndrome along with horrific stories from sufferers whose lives had pretty much ended though they kept breathing. For months I refused to believe that my disease made me part of this sad group. At some point during the first year, however, I reluctantly began to attend a Chronic Fatigue Support Group once a week at Robert Wood Johnson Hospital in New Brunswick.
Sharing experiences with other ME/CFS patients was helpful, confusing and, at times, dismaying as Carol got a sense of what she was up against
I guess it helped to share experiences with others who understood, but hearing about their difficult lives (families that lost patience and refused both physical and emotional support, long lists of medicines and supplements that didn’t work and symptoms that appeared as the disease progressed, and, of course, the doctors who pooh-poohed the existence of any real disease) sometimes just confused and overwhelmed me, filling me with anxiety over what I might expect. But I did I learn the importance of seeing a specialist in Chronic Fatigue Syndrome, and Dr. Podell’s name was regularly mentioned.
Another well-groomed white-haired guru, a gruff man in his forties, this guy touched all bases, cramming into two sentences all the new (this was, like, early-2000) non-allopathic jargon: ‘nutritional’, ‘complementary’, ‘alternative’, ‘natural’, ‘holistic’. He spoke quickly and didn’t much want to listen as he speedwrote instructions. I’d inject a statement here and there but clearly he had an agenda and didn’t need my input. So, along with Enada (NADH), L-Carnitine, Valerian, magnesium, glutathione and other energy-increasing or sleep-inducing supplements, he added Vitamin B 12 shots twice a week.
I had never stuck a needle into anyone, including myself, and I asked Zoe Gallino, the school nurse, if she’d do it for me. She refused but agreed to show me how, so one morning in her tiny office after my two classes she talked me through the procedure. At home, I put the toilet lid down, sat, washed everything in sight with alcohol, stuck the needle into the tiny jar of red liquid, pulled it out and pushed the plunger to eject a tiny amount of liquid over the sink, tried not to think about embolisms, and then stared at my thigh.
Urp. I looked at the needle. I looked at my thigh. Needle. Thigh. What the fuck. I jabbed myself where there seemed to be no vein (I’m not sure why, but it seemed like a good idea), pushed down on the plunger or whatever it’s called, pulled it out, and watched a tiny spot of blood rise out of the hole. Hell. I can do this. I stuck on a tiny round band aid, pulled up my pants, and sauntered away.
Dr. Podell also set me up with one of his staff who specialized in relaxation techniques. She had a back room with two chairs facing each other. She sat in one chair and I sat in the other with my eyes closed, breathing, breathing, breathing. “Pay attention to your breathing. Feel yourself letting go, let go, let go.” I think she was trying to hypnotize me or something. I’m not a let-go-er. I’m a hold-on-er. I breathed but my heart pounded and my nerves flared, more so because someone was telling me to RELAX! What if I couldn’t relax? What then? I was scared. To get better I HAD TO RELAX!
The soft breezes and cool ocean water Carol attempted to visualize just never showed up..
Then came the visual imagery. “You are on the beach, the sky is blue, a warm breeze touches your face, the waves gently lap the shore, blah, blah, blah.” I tried, believe me, but my insistent fear had its own fantasies. She showed me pictures of pretty peaceful places and told me to pick my favorite. I should then imagine myself there.
Again, I tried, but trying seemed to be wrong. I felt challenged and threatened. The message was that my mind was causing my symptoms, and if I couldn’t control my mind, I’d be sick forever. I got lost in this mess: I was being told to give up control in order to gain control. I was fighting against myself, and my stress level only increased. Scared. I was so scared to be scared.
None of his magic, including the Vitamin B12 and relaxation games, helped.
Dr. Podell’s office, however, was a center for an FDA approved study for Ampligen, an “immune-system modulator that works by jump-starting your body’s natural anti-viral pathway and regulating levels of RNase L (a substance in your cells that attacks viruses), which can be high in people with ME/CFS. Some doctors claimed they’d seen improvement in 80% of people with ME/CFS who take Ampligen, and significant improvement in about 50%.” I kept seeing flyers asking for patients to participate in the clinical trials, but the good doctor never mentioned the drug.
Finally, I asked, and learned that I could participate, BUT because it was a double-blind study, half the patients would receive a placebo, and no one would know if the serum dripping into their arms was the real thing, not even the doctor. If I were interested, I’d have to have a blood test to see if I had a certain kind of blood chemistry required for eligibility in the Ampligen study.
Skeptical but still desperate, I agreed to do the bloodwork, figuring I’d decide about the trials when I got the results. Now, I have difficult, unsociable veins. They respond to needle jabs by rolling away, shrinking, or collapsing. (Nurses call collapsing ‘kissing’. My veins frequently kiss.) I’ve been pricked up to 9 times for one blood sample. That morning, all the nurses took a turn with the smallest butterfly needles, and all were unsuccessful. When the initial stab didn’t draw blood, some nurses would fidget around inside the vein, shifting the needle right, left, up, down, forward, back, while I squeezed their rubber ball and cringed from the pain.
The needle-stick from hell didn’t help
After almost a half hour, I was informed, “Well, honey, we’ll just have to take it from your foot.” My foot? I’d never heard of that, but hey, I can see big juicy veins all down the top of each foot, so why not tap one? I discovered the answer when the needle went in. Pain like I’d never felt before shot around my ankle, up my leg and stayed lively, not only for the whole time the blood was drawn, but for about 15 minutes afterward. I nearly fainted.
A few weeks after the blood test from hell, I called for the results and was told they wouldn’t be available for another month or so. The office promised to contact me, but I never heard anything. I decided not to enter the trial; I was convinced I’d be one of the cases receiving the sugar water, and at the time, there was no certainty about Ampligen’s effectiveness. I figured that if the drug proved effective, I’d learn about it and would be willing to pay for treatment myself. At least I’d be assured I’d actually be getting the real drug.
My experience with Dr. Podell and his office was pretty miserable.
Dr. Susan Levine, MD
Dr. Susan Levine, then on Lexington Avenue in Manhattan, my second Chronic Fatigue doctor
Dr. Levine, well-known among CFS patients, was (and is) an author of several important articles about CFS, a speaker at various conferences, a researcher, and a receiver of grants and awards. She’s from the Dr. Kallich gene pool: very slim, dark hair (but long and straight to Dr. Kallich’s bouncy frizz), a kind of Jewish-sister type. Unlike Dr. Schachter, however, she’s very available; at times I called and she answered the phone.
Her office, far from New York Posh, was as basic as Dr. Kallich’s: A waiting room with wooden chairs lined up against two walls and a single secretary/receptionist’s desk. She had her own small office and a generic treatment room. After my first visit, I couldn’t reconcile the image I’d had of an assertive, confident doctor who advocates aggressive treatment, based on descriptions from the support group, with this soft-spoken, reticent woman. She’d describe a possible remedy with an I’m-no-so-sure tone, shrug, and then ask me if I thought I should try it.
The intramuscular injections, however, went just fine.
Dr. Levine introduced me to two new intra-muscular medications, and I never flinched while I stuck the needles into first my poor old thigh and then my poor old ass. First came Kutapressin, a prescription drug derived from pork livers (ugh…but I’m hardly kosher or even vegetarian) which had been found to improve symptoms of CFS patients with high levels of Human Herpesvirus-6 (me).
I injected myself twice a week for about 10 weeks. I’d feel a bit better but not for very long. When the Kutapressin didn’t yield much, she asked if I’d want to try Gamma Globulin shots to boost my immune system. What the hell did I know? I’d read Chronic Fatigue books that mentioned GG, so, yeah. Sure. Because the required needle was so long (like 2 inches?) and had to be stuck in my upper buttocks, Doctor Levine doubted I could inject myself. I couldn’t very well traipse into New York once a week for the injection. I tried to get Dr. Schwartzer’s office to administer the shots, but, after a long difficult time trying to contact him and get a straight answer, I grew angry when he refused, rejecting the treatment.
Confident from my success with administering Vitamin B12 and Kutapressin, I decided to plunge the needle in myself. So plunge I did. There seemed to be no mechanical problems with the shots, I didn’t hit any major veins or arteries, I didn’t pass out, no blood spurted across the room. And, the only result of the GG shots was flu-like symptoms that came and went. No noticeable improvement though.
Good-bye Dr. Levine. You were sweet and except for one time (when you railed at me for calling too often but then it turned out it wasn’t me but another patient you were mad at and so you apologized) patient. but as ineffectual as the rest.
Then I really went off the deep end.
We’re seeing the same old pattern, no idea of the cause of our disease so how do you treat it? Ninety-nine percent of the “experts” are using snake oil as well and on and on it goes. Thirty years and no drug. A handful of success stories, perhaps due to the treatment. Most of the studies being done are so ridiculous as a Dr. the only reason I can see for doing them is to further the reputation of the investigator, never is there an outcome of a treatment even mentioned!
Greg
It’s very useful to hear what it’s like for one patient to see these ME treating doctors. It is also extremely entertaining: great cliff hanger! This is so well written, I’ll be patiently waiting for the next instalment.
Thanks, Christina!
Carol
Oh Carol. these stories are so surreal to me, because it is me! My same exact path! Keep em coming!
Keep on writing, Carol!
It’s heartening to know that others try and try and try and yet we cannot seem to find that elusive cure, or even a viable treatment. Thank you for writing it down — it feels good to know that ME/CFS might not be as unique or isolating as it feels.
How amazing that ME/CFS patients consistently experience the same treatments as described and with the very same results.
Liz,
Like you, I’m finding out how similar our experiences are. Not just our symptoms but our encounters with doctors and treatments. Amazing is right. Disheartening too, but not completely. At least more doctors/researchers are specializing in solving the mysteries of ME/CFS and paying attention to us.
Carol
i am an RN>finished up my practionership just before i collapsed with cfids, fibro, my triger was lyme disease ,15 years untreated, then i collapsed after 4 life ports for the antibiotics. this was before we even Heard of cfis, fibro. i remember asking my rheumatologist..is that why i can’t even roll over in bed? i spent 3 months in the hospital and 2 years and every dime i had bedbound. made the rounds of all the docs. when i called levine all i said was i wanted to make an appointment and that i was a nurse, she said ”i will have my girl call you so you can find another doctor ,thankyo” and she hung p. alot of docs don’t like to treat nurses. i am sick officially 21 years, but it is more like 30 years. we just didn’t know how big n bad lymes was, is.
yes, i have lost all my friends, they tried to stay but when you have a disease that no one comprehends, even yourself it is challenging. my husband left.i went to a local lymes support group and came away feeling sadder than ever. i am having trouble finding hope to live. who am i to ask anyone to love me when i am so sick and could become sicker. i wanted my husabnd to go, he is healthy and deserves peace and joy in his life. still , i have found a rich spiritual life through all this. i am human, i am lonely,i miss loving others.i miss my work terribly. i exist, this is not living. never mind knowing not to take personally the things said to me over the years by my own colleagues”your gona take a walk in traffic”[suicide rate is high with cfids] i wake up and am gratefull if i slept, if i have no pain, if i can bath. i think i am staying because i have a working dog so comited to me. most days i do loo forward to leaving this body. sorry to be a downer, i’m 57 , sick more than half my life,i am trying to find light and help others.i remember when gay men were dying by the thousands, they picketed, rioted and got results they deserved. medications to help everyone affected. too bad we are not able to do the same for ourselves.i will keep you all in myy prayers. eileen
Eileen, I agree its hard to carry on with no hope, we have lost it all, time with our children, homes, cars, all social relationships, and careers. I am able to function because of BHT, it supresses the Herpes viruses. Its inexspensive, I take 4 in am and 4 in pm of 350 mg from vitamin research products. Maybe it can help you function a little better too.
What is BHT? Also to Eileen- The Immune Globulin 30 years ago took about 3-4 weeks to work most of the time longer. Don’t know how long you stuck with it. I have had the same experiences as you with Dr. However, the Immune Globulin when it was made by Bayer really saved me. When they changed the formula with Preservative it no longer worked.
You are right most families do not understand and I had just as soon they go also rather than feel guilty all the time. Mine told me Dr. were all just experimenting on me. Of course they were-they don’t know what we are sick from anymore than we do. That because of the cost made them furious. My best to you , I have found many things that help me. Meditating is not one and neither is talk therapy. It is trying different things and staying with them long enough to see if they work. The sad thing is the arrogance of the top DOCS.. I am also using a CPAC sleep Apnea mask that has really helped. Rec by Sleep specialist.
Don’t Give Up!!!!!
Best,
San Diego #!
And the controversy over “Chronic Lyme” continues. See Jane Brody’s New York Times article:
http://well.blogs.nytimes.com/2013/07/08/when-lyme-disease-lasts-and-lasts/
Don’t know why she never mentions ME/CFS as the result of undiagnosed and untreated Lyme Disease.
I admire your courage and persistence in the face of all this loss.
Carol
Carol, living in NJ, I too have had experiences with all the doctors that you mention and then some! I can so very much relate to your blog! thanks for putting it to words! And there are so many more doctors I’ve been to as well!
Hi Carol,
I”m just wondering if you or any of your doctors have considered the possibility of mercury toxicity from that flu shot (and possibly other exposures)? Perhaps the mercury in the flu shot was the straw that broke the camel’s back?
If so, I’d highly recommend looking into Andrew Hall Cutler’s work on mercury toxicity and his protocol to safely chelate it from one’s body. I’m doing the same, and am hoping to start in the very near future.
p.s. Flu shots back when you got them contained 5 times the ‘safe’ level of mercury in them per the EPA, and it stays in the body (and especially the brain) until it’s chelated out. And there are expensive (and very unsafe) ways to do it, and relatively inexpensive (and much safer) ways as well…
Kelly,
Thanks for your response. No doctor ever suggested mercury toxicity from the flu shot, but I did see some practitioners of “alternative medicine” with whom I had chelation treatments for heavy metals. I’ll get to those in my next post. I’ll look into your suggestion.
Carol
I have battled with chronic cmv and Epstein Barr 7 years. Came down with both and unable to get out of bed after the hospital I worked at mandated flu shot the second year. Can’t de-activate these viruses that “normal people” can just shut into dormancy???
I am a Reg Dental Hygienist and was reg exposed to Mercury for years. Tried Chelation, Was not done right.
I would up in emergency room. Now my mercury levels are failrly low-but some Dr. say it stays in you body forever -somewhere. The Mother Earth Humic Acid seems to help me alot also and does Chelation slowly while putting Minerals and vitamins back. You have to start slowly. This has seemed to work for me. Took me 6 months to get to 2 tablespoon. started at 1/4 tsp.
This is the safest way for me to do it.
My best-
San Diego #1
Carol, great writing in your accounts. So sad.
I want to mention for your benefit and others that doctors are trained by the CDC to believe that you won’t have any serious reactions to vaccines — just a little redness at site, as yours said.
This is not true. It is contained within Federal documents that this is not true, a pretty incontrovertible source. The governments VAERS database shows thousands upon thousands of severe consequences to vaccines, and these are reflected in the inserts that companies like Merck and Glaxo send along with the vaccines, although doctors don’t much read them and seldom give them to patients.
The CDC estimates that only 1/10th of adverse events are reported. You should report yours. Now. Better late than never.
A vaccination is a violent event for the immune system. Vaccines come with adjuvants — mercury in the case of the flu shot, aluminium hydroxide and other substances for others. This allows manufacturers to use less actual vaccine. The adjuvant multiplies the immune system reaction to the vaccine, making it produce more antibodies. Whether this actually makes the body more resistant to disease is not entirely clear, but it does make it produce more anti-bodies that show up in tests.
Anyone who got MECFS following a vaccination should file a VAERS report for the good of the nation and your fellow mankind.
GREAT POST- My son has ADHD and is also AUTISTC -did not happen until he had Small pox vaccine years ago and had to go to hospital. Dr. denied it was the reason. His life has been hell ever since. Can’t take any meds without reactions. He is now in his thirties and doing some better. On natural Diet and Probiotics. Scared to death of any vaccines or meds.
I do agree the vaccines can be deadly. Any of them. I don’t take any. either.
San Diego #1
i never tried anything like these treatments however i did try LDN and for 2 months i felt 75% better! it was so amazing i couldn’t believe how i was living NOW with this ailment! it really made me see how much of a difference i am NOW living, and i’m NOT!
made an app. with a Dr. Lerner, anyone know if he helps us?
What happened after the 2 mos that you felt 75% better? Did you stay on LDN and it stopped working, or did you have to go off LDN?
Dr. Lerner has helped many patients and he, himself, had ME/CFS. Of course not everyone is helped but he’s had success in the past.
Where is Dr. Lerner located?
Cort, where can I find Dr. Lerner?
He is Michigan, I think.
http://www.treatmentcenterforcfs.com/
hi j,
i went off the LDN then took it again but it just didn’t work, however i still try every once in a while to introduce it into my system after waiting a couple months. try it, it might help you and believe me feeling better for 2 months is better then none! Good Luck!
cort, theres a dr. lerner in beverly hills michigan!
Yes, I think its Michigan (the address was MI :))
Dr. A. Martin Lerner in Michigan!
Carol, your blog series is one of the best written things about ME/CFS that I have seen in the decade I’ve been ill! I keep quoting it to friends and family, to give them an understanding of what life with this horrible disease is like.
Thank you so much for turning your talented writing into such great blog posts!
Thank you, Anne. It’s reassuring and satisfying to know that my story resonates with others.
Cheers,
Carol
To Carol and the others thanks for sharing your very truthful stories.
Personally, I am glad that others have had success from various treatments. So far, I have had very little results with spending large amounts of money on hoping for a treatment or even a slight improvement. I may have been left bedridden + in excruciating pain but my sense of humour remains intact + I still wake each morning (after 15+ years) expecting this will get better. If that means I’m naive ….well so be it…it gets me thru the really bad days.
Just a note of caution, not all of us have responded well to mercury toxicity chelation + removal of mercury fillings under CFIDS guidelines. In my case, it was a horrible ordeal –destroyed my teeth and collapsed my immune system even further.
SO just a gentle caution…..
It is through this sharing of our positive and negative results that others can make an informed decision of what they feel may be acceptable to try for themselves. Thank you you all for sharing your experiences, it all helps.
I cant believe you have spent 15 years being debilitated I am going on 5 and not sure how much longer I can live like this. I too have a great sense of humor if I didnt I know I would of succumbed to this illness a long time ago .
Carol your articles are great , I love how you say it how it is , no sugar coating its the only way to let others know what you are truly going through
Hi Carol,
I am sorry about all of your travails, but I think if we don’t keep experimenting we give up. I have had CFS for 16-17 years, but only in the the last 9 months have I really understood how debilitating it could be. Anyway, keep blogging, because the more of us that share our experiences, the better the possibility that we will find the one thing that can make more of a difference. I am currently working with Dr Rey and they put me on Famvir and Immunovir, but then she told me it wasn’t working and sent me to a Rheumatologist who wants me to try Plaquenil – an anti-malaria medication that is sometimes used in autoimmune disorders. I decided to try LDN first, but on day 5 when I upped my dose to 1.5mg, I felt the worst I felt in 4 months which was pretty bad, so I stopped. I have not given up, but I decided to try Methylation protocol as opposed to Plaquenil or LDN just yet. Along with that, I am trying to improve my digestive system by making my own Kefir and I plan to add L reuteri after reading the recent article http://www.cortjohnson.org/blog/2013/09/05/changing-gut-flora-feeding-good-bacteria-chronic-fatigue-syndrome/. Based on your NK cell readings from Klimas and Rey’s office – mine are actually much lower, the thing I want to try which Dr Klimas was trying to get a study for is Interleukin-15 or IL-15. It is being used to treat cancer patients by boosting their own body’s ability to fight infections. Sadly, the NIH turned her down. I don’t know if its a money issue or an approval issue, but if its a money issue, I was thinking that we should start working on getting some funding for it. May you wake up one day and find that it is the first day of the rest of your life.
Chris Pfeiffer
Thanks Chris for the report. It’s fascinating hearing about the changes in your protocol. Good luck!
I had a totally different experience with Susan, sorry to hear you didn’t. After 5 years on the Medical-Merry-Go-Round and my health deteriorating to almost 30% and all my traditional Doc’s telling me nothing was wrong,eat more, eat less,chicken soup, take sleeping pills see this specialist see that specialist and all their tests were normal I found Susan and she literally pull me back from the grave. I found her very though, caring and spot on in evaluating and addressing all my multi symptoms that all the other doctors ignored. She addressed my total health, referring me to Doctor’s who understand the relationship between their specially and CFIDS (half the battle). Was always available and quick to treat new and reoccurring issues. My level of health improved to 60% in a very short time. As I was spending more and more time in Florida I started see the late Dr. Keller (beautiful soul) under his guidance I recovered 90% so I found less and less need to see Dr. Levine, now that I’m back in NY she is still available on the occasion I call. I am forever grateful as she was the only doctor in NY to first diagnose me and took me on the road to recovery.
To all reading this iCFIDS is extremely frustrating on it’s onset so finding the right doctor to diagnose you is the key, finding doctors in other practices who don’t roll their eyes when you mention CFIDS is parallel to recovery. Which is the quest I am on now for conditions that may or may not be in part related to my past illness.
I was dx’d by Susan Lavine, MD and saw her for a few yrs before I had to move due to money issues. I took the Kutepressian. I didn’t find it helping me. That was in 1993. I’m still struggling with my illness and I don’t take anything for it. Snake oil salesman come a dime a dozen.