posted
Do you consider yourself severely immunocompromised?
Yes or No
Sent off a FedEx package to an IDSA doc in regards to hubby's wrongful death lawsuit for failure to diagnose Babesia.
Amazingly the doc from a prestigious University called me back on the same day he received my 2 page letter. We had a 5 minute discussion this afternoon and he has promised to call back tomorrow.
Anyway - the doc said he saw 3 key issues in my lawsuit. They were already issues I was aware of.
One of the issues is that "According to the medical literature chronic or persistent or relapsing Babesia has only been documented in severely immunocompromised patients such as those with cancer or AIDS or organ transplants."
This is actually one of the arguments I had with the hospital docs in regards to Steve. They claimed he was immunocompromised simply because he had been taking 5 mg of Cortef for about 8 years.
ILADS docs are well aware that Babesia can be chronic and that lyme and other tickborne diseases can cause immunosuppression. It is time Infectious disease docs made that discovery as well.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Rumigirl
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posted
Is there really NO article about this??!! Actually, I can believe it, sadly. Please PM me, if you can that article, as I'm trying to get my current insurance company to cover Coartem, which so far they won't ("because I don't have a documented case of Malaria"!).
Immunocompromised from 5 mg of Cortef??!! Ignorance beyond belief. I presume you know that Cortef is 1-4 with prednisone, i.e., 4 mg of Cortef = 1 mg of prednisone.
I thought that there are articles about Bb and other TBD's causing Immunosuppression. But maybe they are just within the LLMD community. Sigh.
Severely immunocompromised? Check! Unfortunately. With 4 "autoimmune" diseases, TBD's for all or most of my life (unrecognized until the last 10 years).
Posts: 3792 | From around | Registered: Mar 2008
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Keebler
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posted
- Yes.
I had a positive for babesia d. (with positive for borrelia b. & for HME, an ehrlichia) from Igenex but my MD denied such a trio even existed in 1997 in my state. Hence, no treatment.
Years later, I did what I could when I found some nutrient formulas but with no formal treatment, I can certainly say that chronic babesia was on the table.
And, indeed, severely immunocompromised in various ways. Even my dentist has told me that for years, considering the issues with my mouth tissue.
Various "autoimmune" diagnoses received over the decades.
Tests positive for autoimmune antibodies for both adrenal & for inner ear. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- "physiological replacement dose Cortef"
did not turn up any results but I think 5 mg. of Cortef may well fall in that category and, if so, would not be the cause of a compromised immune system.
I can't pull this out right now but Wilson has that detail in the adrenal book linked here:
Discussing the very low, safe Physiological replacement dose range of hydrocortisone for some with adrenal dysfunction. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler - Thanks for the links. I have already researched the cortef dose and personally do not think it caused immunosuppression.
Rumigirl - Will send you an email later today. ------------------------------------------------
Just got off the phone with the I.D. doc - he basically listed all the issues that a good defense lawyer would argue in regards to the case. His conclusion was that it was not impossible that Steve had chronic Babesia but that it was improbable.
Did not learn much new - but now know all the arguments for and against based on the opinion of a Babesia expert. And yes, we briefly discussed the IDSA versus ILADS controversy in regards to Babesia.
The doc did give me a couple of ideas for additional medical journal research and pathology testing I need to follow up on.
Will be sending the doc some additional medical records and he is going to review them and also try to find another doc to refer me to who might be willing to testify as an expert witness.
The doc I spoke with said that most Babesia researchers are P.H.D.'s and not physicians unfortunately.
Overall the discussion was either neutral or slightly more encouraging than discouraging.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Rumigirl
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Bea, do you know the book, The Safe Uses of Cortisol by Jeffries, MD (I forget his first name). It's a classic in how to use Cortef at physiological doses safely and effectively.
No, it's not "a peer-reviewed article in a medical journal", but it's a good book by a doctor.
Posts: 3792 | From around | Registered: Mar 2008
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posted
Rumigirl - Yes I am familiar with the book.
I am in somewhat of a catch22 situation.
IDSA and the medical literature says that chronic or persistent or relapsing or refractory Babesia only occurs in severely immunocompromised patients.
The hospital docs believed hubby was immunocompromised due to the low dose cortef but of course they did not believe the Babesia diagnosis.
I believe that while his immune system was not optimal that if he was immunocompromised then it was a result of his chronic tickborne infections or possibly genetic predisposition. Immune subclass testing was done at least 3 times during Steve's 12 year illness and changed very little over that time.
I know I have seen at least one medical journal article that points to the fact that Babesia itself can suppress the immune system, but am having difficulty tracking down that article.
Have not given up the fight. Still reading and researching and writing letters to docs and researchers.
The pathologist from Columbia Presbyterian in New York is supposed to call later this week. Looking forward to finding out what they have found and what additional testing they plan to do on hubby's brain.
Have been reading a lot about the immune system and how it is supposed to react to Babesia. I personally think that this is a big factor in persistent infections. Different parts of the immune system are supposed to respond to lyme and to Babesia. But when someone is infected with both the immune system can't tackle both at the same time in my opinion. And then if someone has other bacterial or viral or genetic issues that just complicates the matter further.
As we all know the few widely published research studies on persistent infection only looked at lyme by itself and at short term treatment so there is so much that has not been well researched.
And there are only 2 or 3 articles discussing chronic Babesia in humans and those patients did not have other tickborne diseases but were immunocompromised from AIDS or cancer or immunosuppressive drugs given to organ transplant patients for example.
Have been reading the Weisbren book and my first impression is - where are all the Babesia and bartonella coinfected patients?
As far as the cortef goes - hubby was on 5 mg daily. The dose of steroids the hospital initially put him on was the equivalent of 3000 mg of cortef daily. Not 300 but 3000. Dose was later reduced to 80 mg equivalent daily.
Research mice are given steroids to bring out a latent Babesia infection - several medical journal articles on this. So the reality is that the steroids given by the hospital made his Babesia worse and did not help at all with his lung failure because it was not caused by an infection that steroids would have helped.
Even so, if Babesia treatment had been started quickly enough he still might have been able to overcome the Babesia infection in my opinion.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I'm so sorry to hear that you lost your husband! Good luck with your lawsuit!
I can't say that I've been immunocompromised. I've had babesiosis for 10 years, treated for 7 and it keeps coming back. (Also treated for Lyme for 7 years, and it keeps coming back—of course).
I fear your research into chronic babs in non-immuno compromised people won't turn up much. When I tried to research this, I found that there is so little known about babs, that no one has studied healthy people with chronic babs. However, since there is little if any follow up after treatment, and the main symptoms are fatigue, the research doctors probably never considered that it could come back after the 2 week treatment! And that the fatigue was just "in their heads", etc.
I would stress this point though: Babesia attacks the red blood cells, effectively making the infected person anemic (not enough usable RBC). So would a chronically anemic person have a weakened immune system? And if so, why wouldn't a person with babesia reduced RBC, have the same problem? (If you look up the symptoms of anemia you'll see they're very close to babesia infection symptoms). How can a someone make the case that chronic anemia doesn't harm the basic functioning of the immune system, as well as all other systems?
And you do know that babsia is deadly if a person doesn't have spleen, right? So if a person's spleen was not functioning at 100%, how low could it function before it couldn't keep babesia from causing death? (I have NO idea how spleen function is measured, btw).
I don't know much about Malaria, but it is similar to Babesia. Malaria is often deadly, what is the mechanism that causes death? Is it a loss of usuable RBCs? (And of course Malaria can be refractory!). Again, I don't know much about Malaria, but it might bolster your arguments.
Again, Good luck.
Posts: 872 | From New York City | Registered: Jun 2008
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Keebler
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- SLML,
you ask: "I am positive for Babesia Duncani and have been treating for 8 months. Did you successfully treat yours or are you struggling with it being chronic? " (end quote)
I'm not sure how to answer to best serve the purpose of the question.
For many, lack of access to treatment - or treatment for long enough - is a major factor in the chronic aspect.
A few attempts here and there with particular herbs. Doctors would never admit it was any problem at all (not just no lyme in my state, no tick borne infection is the state motto), so I did what I could on my own, within my budget.
I always hate to answer this sort of question as budget always comes in and I don't want to sound like I'm complaining. Yet, it's important to know that IMO when a fuller approach can be done, it's best to fully address it. I just need to explain why I don't do as I suggest. That's all.
I don't think it was nearly enough but two consecutive rounds (forty days each) of artemisinin with other key herbs did a lot to help stop the night sweats, for sure.
Read Zhang's detail on that. It was on that protocol for several months, twice. Should have been longer. I was much better while I was no it.
Years later, one month of Cryptolepis also really helped. That's all I could give it. Could never do that combined approach but did add one other herb.
Be sure to read all you can with Buhner on this topic if you are also on your own, though.
Crytolepis has been very helpful for many. But, then, that's another thread entirely. Mentioning this in case you are looking for a different approach. Ask your LLMD if you feel you aren't getting where you need to with this. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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