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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Sun Jul 10, 2011, 02:30 PM
Tom Cramer Tom Cramer is offline
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Possible Cure for PNH

Have you heard that about 3% of people who have PNH actually get better, and the doctors donít know why?

Iím one of those lucky people, and I think I know why.

Hereís my story, and I have nothing to gain by disclosing this information other than the self satisfaction that my story might help someone.

Twenty five years ago I was diagnosed with PNH. Over the years, 3 different Hematologists confirmed this diagnosis. The disease progressed to the point where I was in and out of the hospital getting blood transfusions to keep me alive.

When I was in crisis, the color of my urine was black.

My symptoms were:
1) Bleeding into my urine
2) Bleeding in my colon
3) Bleeding in my blood vessels
4) Chronic fatigue syndrome and anemia
5) Chronic Backache
6) Chronic Head aches
8) Chronic diarrhea
10) Incontinence
11) Depression
12) Memory loss
13) Insomnia
14) Fever
15) Chronic abdominal pain

Over the years I consulted with about 15 medical doctors and about 15 alternative therapy doctors. Over this 25 year period, I probably invested over $250,000 in doctoring of some kind or another.

At the worst phase of the disease, my life was upside down as I spent 30% of my time in medical clinics searching for answers, and at times, preferred death over the symptoms I was experiencing.

Today, I no longer have symptoms and feel well. I am either fully recovered or close to a full recovery. My life style has returned to normal.

The beginning of my recovery began 10 years ago when I discovered that I had Lyme Disease, Babesiosis and Ehrlichiosis. Babesiosis and Ehrlichiosis are co-infections to Lyme disease (you acquire these diseases at the same time that you acquire Lyme disease). I diagnosed myself based on the research and reading that I did, and began treating myself with herbal antibiotics.

After a year of self-treatment, I met a medical doctor that had experience with these diseases, and he confirmed my diagnosis based on prior clinical symptoms and with blood tests. I had antibodies to all three diseases in my blood stream.

Through the course of my research, I read 8 books on these 3 diseases. The 4th book I read was a book called: The Diagnosis and Treatment of Babesia by James Schaller, M.D. (you can get it at amazon). He states on page 64 of the book:

1) When Babesiosis is suspected, have your physician and pathologist look for:

a. Signs of ruptured red cells (such as urine or blood hemoglobin levels).
b. Low platelet counts
c. Unusual lymphocytes
d. Signs of cells eating red blood cells (hemophagocytosis)
e. Red or dark urine.
f. Pancytompenia or a low number of all the cell types found in blood.
g. A urine examination looking for whole red blood cells and hemoglobin from burst cells.
h. ECP stands for eosinophil cationic protein and these might be abnormal in either Babesia or Lyme infections.
i. Abnormal liver function.
j. Lactic dhydrogenase or LDH is present in a number of key organs including the liver. Babesia can occasionally alter these levels.
k. A sedimentation rate (ESR) is a blood test that is sometimes positive with Babesial infection.
l. A Direct Coombs test examines red blood cell clumping and it may or may not be positive.

Does this sound familiar?

NOTE: I had almost all of the above symptoms AND have antibodies to Babesia in my blood stream.

The author goes on to say that:
The problem with relying on blood tests is that only profoundly ill patients will be discovered using these tests. Depending on these for the vast majority of Babesia infections will lead to significant under diagnosis.
Other symptoms of Babesiosis:

1) Fatigue
2) Trouble thinking
3) Air hunger
4) Coughing
5) Fevers
6) Headache
7) Dizziness
8) Chills
9) Sweats

At one time or another, I have had all but two of those symptoms. Dr. Schallerís daughter had only two of those symptoms, and tested positive for Babesiosis. And no one diagnosed her with this until he spent 100ís of hours in research and discovered this for himself Ö. Hence the reason why he wrote the book.

I believe that:

1) Babesiosis is a possible cause or complicating factor for PNH Öor

2) I was mis-diagnosed with PNH and actually had Lyme Disease/Babesiosis/Ehrlichiosis

I believe that it is possible that some individuals diagnosed with PNH may be able to cure their symptoms (like I did) by treating Babesiosis and Lyme Disease. Itís a known scientific fact that Lyme disease and its co-infections can cause the symptoms of many other diseases and conditions.

Why is it that some people recover from PNH, while the vast majority do not? My case demonstrates that it may be possible that people who recover from PNH are those people whose immune system has somehow figured out how to eradicate the Lyme/Babesiosis/Ehrlichiosis infection from their system.

Is it possible that a certain % of PNH diagnoses is incorrect, and many people could get well from the treatment for Lyme Disease / Babesiosis / Ehrlichiosis? Ö or just maybe Ö is it even possible that PNH is a label that medicine has given to symptoms that are actually caused by Babesiosis?

By the way, donít bother asking your Hematologist about Babesiosis. He/She will not be able to spell it let alone know what it is and what the symptoms are. If I had listened to my Hematologist who said that there was nothing much I could do for my PNH Disease other than to treat the symptoms as they came, I would be dead by now.

If you would like to check into this, I suggest that you do the following:

1) Read the following article by Dr. David Williams about Lyme Disease and its coinfections:

http://www.samento.com.ec/sciencelib/sarticles/thegreatimpostor.html

2) Find a Lyme Literate Doctor to test you to see if you have Lyme Disease or Babesiosis. The article above will tell you how to find the right doctor.

3) If you discover you have Babesiosis, read Dr. Schallerís book noted above. You will need a very good doctor. You must find someone who specializes in this. Babesiosis is very hard to cure and there are not very many doctors who know how to treat this disease.

I hope this information will help you. Then all my suffering and my lucky discovery will have helped other people.

And if you are wondering if I am a real person, you can go to my companyís web site, www.wisie.com, click on About Us, and you will see my picture. Iím looking a lot healthier in that picture than I did 15 years ago when I was near death, my skin tones were gray, and I was skin and bones.

I am making this announcement to help people. I do not have time to return to this forum and answer questions as I own two companies, and am working 80 hours per week.

To your health,
Tom Cramer
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Tom, 61 year old entrepreneur, diagnosed with PNH in 1987; cured in 2009 by treating Lyme Disease and Babesiosis
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  #2  
Old Mon Jul 11, 2011, 10:37 AM
Dick S Dick S is offline
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Can you elaborate on your self treatment you mentioned?
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  #3  
Old Mon Jul 11, 2011, 11:28 AM
Marlene Marlene is offline
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Hi Dick,

I don't think we'll be hearing back from him. He stated in his post that he will not be checking back in. I am always a bit cautious with "hit and run" posts like this especially since he does not say what treatments he did, his clone size and the fact that he found a way to insert a website about his business. The last one is a red flag to me. I found another post by him linking Lyme and Alzheimer disease. And again, in that post, he said he would not check back and posted a link to another one of his businesses.

I'm not doubting the possibility of Lyme to be a trigger for PNH. Nor that he was misdiagnosed up front. Nor that he resolved his medical issues and restored health by treating for Lyme. I just wish when people post these type of threads, they stay around to field members' questions.

Diagnosing and treating Lyme's disease is very controversial and complex. It's symptoms are many and can mimic many diseases.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #4  
Old Mon Jul 11, 2011, 04:49 PM
mharrell mharrell is offline
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My BS meter just shot up. He also posted the same message on the PNH support group. I think he's just trying to improve his search engine ranking by having links from other sites to his.
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  #5  
Old Mon Jul 11, 2011, 06:32 PM
triumphe64 triumphe64 is offline
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I agree with MHarrell. Especially with the touchy-feely nature of his other business.
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #6  
Old Mon Jul 18, 2011, 05:36 PM
JodyW JodyW is offline
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I dont know if he is for real or not, but it did get me thinking and doing some digging on my own. How come I dont see much about the source of the disease and a lot about treatment, cures, care etc.

WHen I think about my sons life, he has had so many factors that could have caused his VSAA. Including a spider bite from a hobo spyder that when I researched it can result in AA. Or, treatment of infections with Bactrim , or unexplained years of hives for no reason, or night sweats, behavior problems, ADD. etc etc etc.

Is there any group doing research on causes or is everything about treatment. Wouldn't it help to know the cause of the disease. If for no other reason then to prevent others from the same results.

I assume this is typical of new patients.. wanting to know WHAT caused this.
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Jody, mother or Trevor 23. Diagnosed VSAA 3/11 , ATG cyclosporin 3/11 response 6/11, Relapse 1/13, Round 2 ATG 1/13
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  #7  
Old Mon Jul 18, 2011, 06:37 PM
Neil Cuadra Neil Cuadra is offline
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It would be wonderful to know the causes of AA across the population so that preventive measures could be taken. For example, if they knew that a particular pesticide presented a high risk of causing AA they could restrict its use, fund research into replacements for it, issue warnings about limiting exposure, outlaw it, or study the pesticide's chemical properties to learn what mechanism leads to AA.

Medical researchers can gather data to find suspected causes statistically. If AA occurs more often than average among workers in a particular industry or among residents in a certain neighborhood, they can zero in on what those people have in common. They can even keeps stats on patients treated for a disease or condition with one recognized treatment vs. another, e.g., studying whether AA is more or less common when a bacterial infection is treated with chloramphenicol vs. streptomycin vs. tetracycline.

The main problem limiting this research is that they can't do trials of potential causes. For example, it wouldn't be ethical to expose 50 patients to chloramphenicol and 50 patients to placebos just to see if the first patients get AA more often. So they can't prove in that way that a given exposure, substance, or drug is a direct cause of aplastic anemia.
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  #8  
Old Mon Jul 18, 2011, 06:48 PM
JodyW JodyW is offline
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Neal,

Once again your calm thoughtful response puts my stressed out, frustrated , fearful , thoughts to rest . I am not sure I wont keep searching for my own, How did this happen, but at least I have some perspective on why others arent doing the searching.

Thanks.
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Jody, mother or Trevor 23. Diagnosed VSAA 3/11 , ATG cyclosporin 3/11 response 6/11, Relapse 1/13, Round 2 ATG 1/13
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  #9  
Old Mon Jul 18, 2011, 09:22 PM
Neil Cuadra Neil Cuadra is offline
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I should have mentioned that every patient would like to now what caused them to get AA, but unless they had a family history of AA, prior radiation or chemotherapy, or one of the known toxic exposures, the doctors usually don't know what caused it and the patient has only guesses. The cause rarely matters for making treatment decisions so doctors may answer a patient's questions about possible causes but probably won't investigate it as part of caring for the patient.
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  #10  
Old Tue Jul 19, 2011, 02:25 PM
nan nan is offline
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He posted the same thing on the PNH support group . One thing he says he isn't coming back. That was TIP NUMBER ONE, second one ,he has the symptoms wrong for PNH. He needed to do more research before he posted. Isn't it awful someone will try to make money on people who are very ill. Sad sick person.
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  #11  
Old Thu Jul 21, 2011, 04:28 PM
bchenaille bchenaille is offline
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Neil, Take charge once again

Neil:

This website has been a HUGE blessing to so many people. In reading your last post on this thread, a light just went on. We have never been contacted by anyone in the medical community asking us to fill out a survey of anything prior to Kathryn contracting AA. Yeah, maybe a few questions by the doc at the hospital, but nothing that ever felt like they were data collecting to find a global cause/effect.

Since this forum probably has the highest number of members, may I suggest you start a survey that lists out questions that "may" show links to acquiring AA? I have spent many hours thinking about everything from sickness, to chemical/fertilizer exposure, to heavy metals, bug bites, etc... If we could all complete a survey on a site that automatically shows the percentage of those that may have similar histories prior to contracting the disease, YOU may actually find something that gets written in the history journals . . . or at least contribute to them.

I would be happy to help compile the list of questions.

Let me know.
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  #12  
Old Thu Jul 21, 2011, 07:18 PM
Neil Cuadra Neil Cuadra is offline
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That's an interesting idea, Bill. We have over 2000 forum members (not all of them are active posters) across a range of diagnoses. Still, it may be a reasonable sample size for rare diseases like these if enough members participated. However, I'd assume that the AA&MDSIF, the MDS Foundation, the PNH Registry run by Alexion, and NIH have more data than we could collect here, including names and addresses, while here we're pretty careful about member privacy so many users go only by first names or nicknames and some don't identify their locations.
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  #13  
Old Thu Jul 21, 2011, 07:52 PM
triumphe64 triumphe64 is offline
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Support H.R. 640

Representative Doris O. Matsui (D-CA) formally introduced the ďBone Marrow Failure Disease Research and Treatment ActĒ (H.R. 640). This legislation would bring together the resources of several federal agencies to advance our understanding of, and treatments for, aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal noctural hemoglobinuria (PNH).

Go to

http://www.aamds.org/

The "Get Involved" section at the upper right will lead you to information about this bill and how you can write your Representative and get their support as a cosponsor of this bill. The bill is asking for.

A national bone marrow failure disease registry so that researchers can combine their data in one place, yielding more effective research designs and better results;
Pilot studies through the Agency for Toxic Substances and Disease Registry to determine which environmental factors cause people to acquire bone marrow failure diseases;
Minority-focused programs to make information on treatment options and clinical trials available to minority communities, particularly Hispanic and Asian American communities;
Agency for Healthcare Research and Quality grants to help improve diagnostic practices and quality of care for patients with bone marrow failure disease
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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Old Fri Jul 22, 2011, 09:35 AM
bchenaille bchenaille is offline
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While I applaud the efforts to petition the Gov't on these efforts, new social media has given power to the individuals like Neil and Marrowforums to reach the masses at lighting speed. If we wait around for the bureaucracy to begin implementing new programs . . . you know where I'm going with this.

If we could start a grassroots campaign that goes viral (with precautions and safeguards to weed out advertisers and protect people's privacy), I believe we could see statistical anomalies very quickly. Or . . . we may soon come to realize that most everyone acquires these diseases in very different ways. Either way, the data would be informative and fascinating to say the least.

In reading many posts, this is a common question and many have already given their "theory" on how they or a loved one acquired their disease. Putting this data in a spreadsheet to show statistics may reveal paths the medical community should investigate. PLUS, getting the word out on this project may funnel more to this forum.

Neil, how can I get a document to you listing some of the categories that may contribute to a general questionnaire?
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  #15  
Old Fri Jul 22, 2011, 12:03 PM
Lbrown Lbrown is offline
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I wish the original poster had stuck around instead of attempting what seems like spamming the forums. Sigh.

I totally agree with the possibility of infectious causes of these diseases. There is a paper on pubmed about AA being way more prevalent among farmers in Asia. I can dig it up if anyone is interested. Could be they are around more bacteria. I actually now suspect I had erlichiosis 20 yrs ago. It was thought to occur only in dogs, it has been proven to be more prevalent in the southern states, and we had just gotten back from driving to Florida (I live in Canada). It was 1991, and I think it wasn't recognized in humans until around 1999. I was never diagnosed with a cause of my 106.2 fever and no white cells.

I am on an experimental treatment involving a VDR agonist + small doses of antibiotics. I'm still getting transfusions and my WBC is insanely low (0.7 last week, up from 0.6 a few weeks before), but I have noticed a few improvements. My breathing this year is a lot better than it's been in awhile, I have had no tooth infection for the first time in about 8 years, my intolerance to heat is vastly improved, and chemical sensitivity (perfumes, yuck) seems better too.

Deb

ps - here's the article: http://www.ncbi.nlm.nih.gov/pmc/arti...3/?tool=pubmed

Last edited by Lbrown : Fri Jul 22, 2011 at 02:32 PM. Reason: Added article about AA possibly having infectious origin.
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  #16  
Old Fri Jul 22, 2011, 12:43 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by bchenaille View Post
Neil, how can I get a document to you listing some of the categories that may contribute to a general questionnaire?
Click Contact at the bottom of this page and use the email address shown on that page.
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  #17  
Old Tue Aug 16, 2011, 09:41 PM
zig zig is offline
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Hi Tom,
thank you for some valuable information, it's certainly worth looking into in my case. I'll have my head buried in books and articles : )
Mia
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