The patient has a history of tick bites but no diagnosis as yet. Spouse gave patient doxy and after 3 weeks patient experienced severe blood issues -- low WBC, low RBC, low platelets, low hematocrit and low hemoglobin etc.
Currently at Mayo on steroids and antibiotics (not sure which ones). Getting blood transfusions and platelet infusions and IVIG too I think. NO DIAGNOSIS yet. Cancer has been ruled out.
I have spoken to the spouse by phone. Anyone who has a physician suggestion or ideas please respond here or send me an email to the address below.
Patient is from Arkansas and spouse and kids and dog all have lyme and coinfections.
seibertbb (at) yahoo (dot) com
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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poppy
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Unbelievable -- the hospital is trying to talk the patient into having his spleen removed.
Of course the spleen is what is destroying the platelets. But why is the bigger question. If it is infectious or autoimmune in my opinion there has to be a trigger.
If the doxy is what caused the decrease in blood counts then it must have been hitting an infection such as ehrlichia or anaplasma or maybe babesia.
Have suggested the patient request a blood exchange as it is the only other thing I could think of that might help.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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GretaM
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Bea-I am praying for this person.
Oh yes...let's remove the spleen.
Where's the gag me emoticon?
Close enough...
"Doctor, my eye hurts." "Well miss, I can't figure out why, so let's just take it out so it doesn't bug you anymore."
This kind of mentality in medicine makes me want to bang my head into a wall.
So here this poor person is, sick as a dog, with a history of TBD, and instead of antibiotics/malarials etc, the docs wish to remove an organ that plays a key function in immunity.
Any old antibiotics will do for Ms. Jones when it comes to a chest cough (just to get her out of the office), but no antibiotics will do when it comes to trial by error for TBD.
Arghhhhhhhhhh grrrrrrrrrr
Praying for a miracle for this poor person.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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I called hubby's former LLMD tonight and they are going to call the patient. But as the LLMD mentioned the steroids the patient is on are a major major issue and if the patient survives and gets out of the hospital then who can help from there.
The LLMD I spoke to was actually of the opinion that if the person did have babesia then they probably would not even survive surgery to remove the spleen.
The lack of a dedicated hospital for tickborne patients is a very very serious problem for the most critically ill patients. There are at most half a dozen LLMD's in the entire U.S. who have hospital privileges.
The only good news is that when I spoke to the patient's wife today a new doc was on staff and they want to wait awhile before removing the spleen. And the blood counts have improved some except for platelets are still low.
But of course Mayo thinks they have tested for and ruled out tickborne diseases -- an equivocal lyme test is irrelevant to them and they never tested for babesia duncani and who knows what else they never even considered.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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poppy
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The sign over the door at Mayo should read: Abandon hope all ye who enter here with tickborne diseases.
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Rumigirl
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quote:Originally posted by poppy: The sign over the door at Mayo should read: Abandon hope all ye who enter here with tickborne diseases.
Ain't that the truth!
Yes, the first thing I thought of, also, was Ehrlichia/Anaplasma! That's what this is screaming. Plus whatever other TBI's this poor patient has.
What a sad state of affairs. How many times does this kind of scenario have to play out?? And the band plays on. Awful. I pray that she gets better enough to get the heck out of there so she stands a chance.
Oh, and by the way, I've had the exact same problem repeatedly, albeit less seriously, as I wasn't hospitalized. Neutropenia, leukopenia, thrombocytopenia (low platelets), and low RBC's all at once---all due to Anaplasma----plus the others, of course. The low RBC's surely are due to Babs or Bart. Arghhh!
And, of course, guess what the doxy would have been hitting besides Bb? Of course, Ehrlichia/Anaplasma, among other things.
Posts: 3771 | From around | Registered: Mar 2008
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Yes, doxy hits everything unfortunately. I had forgotten that it hit bart also until I talked to hubby's former LLMD. So lyme, ehrlichia/anaplasma, babs and bart all respond to doxy to some extent.
And the patients symptoms could be any or all of those infections as there is so much overlap.
Praying for a good outcome.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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GretaM
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Bea-do you have an update? I am worried.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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The patient is still at Mayo. It has been 8 or 9 days now. RBC better, but platelets dropped again and WBC back down. Docs discontinued previous antibiotics and started levaquin. But they increased steroids as well.
Hubby's former LLMD did call and talk to the spouse but there is not much an outside doc can do other than offer support and suggestions.
Still very concerned for this patient who has no diagnosis and is very very sick.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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GretaM
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I obviously do not know much when it comes to medicine.
I thought white blood cells were 'fighter' cells to help attack pathogens in our body. WBC is the 'army and navy' so to speak.
So if there isn't enough WBC to fight for the immune system, how does giving steroids, an immune suppressant help?
It seems counter intuitive to me.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Razzle
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posted
Bea,
Sounds like my blood counts when I'm on the TPN (like I am now)... All my counts are low...and they tend to cycle every 2-3 weeks... Yeah, I think it is the infections doing this in my case...
Greta,
When I get my blood tested, my WBC count is usually low. If I'm on steroids for allergies, my WBC count comes up into the normal range.
I asked my Allergist why this was so, and he said because when I'm on steroids, the WBC's no longer stay stuck to the blood vessel walls because the steroids are reducing the allergic inflammation.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Low platelets are either caused by infection or an unknown autoimmune problem. And as we all know ID docs like to think everything is an autoimmune issue and the standard treatment for that is steroids.
Just learned the patient is having a 2nd bone marrow biopsy tomorrow. The hospital docs are still not convinced the patient does not have cancer even though the doxy was the initial trigger that caused the low platelets and low RBC and low WBC.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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GretaM
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posted
Thank you Razzle and Bea for clearing that up.
If I ever get my brain power back, I would like to take some medical courses just to learn the basics.
Until then... I'll pick your brains
Argh.... ID docs. Why does everything have to be autoimmune? I always thought they wanted to see infections, considering they specialized in infections...
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Rumigirl
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Oh, Lordy, this does NOT sound good. This patient is in one of the worst possible places for a TBD patient (which we assume they are).
Bea, you are so right. The need for hosptial(s) for TBD patients is huge. But that will be a cold day in h@$#.
Posts: 3771 | From around | Registered: Mar 2008
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posted
The more I learn about this case the more it upsets me.
The patient just had his 4th bone marrow biopsy. I thought it was the 2nd one.
Yet they won't retest or even test for all the possible tickborne infections.
When patient receives a platelet infusion the count goes up to 30 or so and then within 2 or 3 days it goes back down to 5 or so. A normal count is above 150.
Results of the most recent bone marrow biopsy won't be back before Monday or Tuesday so the patient will miss a previously scheduled appointment with spouse's LLMD.
So sad to see a 33 year old father of 2 (kids have congenital lyme) at the mercy of Mayo docs who have no clue.
I think Tuesday makes 2 weeks at Mayo with no diagnosis.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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poppy
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Any chance the patient could just leave the hospital for some place less obtuse? Could the spouse demand a test for ehrlichiosis? Don't patients have any say? I would not want to be incarcerated in a medical institution that absolutely refused to listen to anything I said. Is there an ombudsmen/patient advocate in the hospital that could help get this test done?
Two weeks in that hospital is going to cost a fortune. I hope they have good insurance.
If they haven't figured it out in two weeks, it seems like they have had their chance and failed.
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nefferdun
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Here is something I found yesterday. It was in a vet publication (of course).
Conclusion: We found an association of Bartonella seropositivity with platelet disorders (thrombocytopenia, epistaxis, excessive bleeding, and splenomegaly) and pancreatic disorders (pancreatitis and insulin-dependent diabetes mellitus) in both cats and dogs. Similar disorders were originally described in people infected with Bartonella. Appropriate antibiotic therapy caused rapid recovery of animals with platelet disorders and resolved or lowered the insulin requirement in 39% of infected cats with diabetes. Bartonella may inflame the pancreas in some cats leading to insulin-dependent diabetes mellitus. Our findings indicate that Bartonella can inflame virtually any tissue in the body and can induce varied clinical syndromes.
The person should be off steroids too. Crazy. It is just awful.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Wish I could help more. This man and his family are in my prayers.
Sue
-------------------- Lyme, Bart, Babs D, FL1953 I am just sharing my thoughts and experiences - I'm not a medical professional. Posts: 69 | From Midwest | Registered: Mar 2010
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posted
The good news is that the bone marrow biopsy shows no cancer just like the other 3 that were done.
I think the spouse has decided to get more insistent on specific tickborne testing and request the tests in writing as I have been suggesting.
Patient has rescheduled an appointment with spouse's LLLMD on the 30th and plans to leave the hospital in order to make that appointment even if they have to sign themselves out AMA (against medical orders).
Bea Seibert
Thanks for the links everyone.
The patient did have one test for ehrlichia or anaplasma which was negative -- not sure which species was tested.
And babesia microti was tested. But no tests for babesia duncani (WA-1) or bartonella as far as I know and there are at least a couple of more ehrlichia/anaplasma strains that could and should be tested for.
Think they are trying IVIG again, but it didn't seem to do much when they tried it before.
It is next to impossible to get hospital docs to think outside of the box. And since the patient is on a hematology floor with mostly cancer patients then that is their primary focus.
It is almost surreal how single-minded or maybe I should say narrow-minded hospital docs are. And the bigger the institution the more they do things by the book in my opinion.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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GretaM
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4 bleeping bone marrow biopsies...
Why does the "Establishment" fight diagnosing TBDs so much?
You would think the odds of 3 biopsies being 'wrong' are much higher than a TBD, but obviously, the brain-washing about TBDs really worked on those docs.
It is not logical.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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poppy
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In the United States, the term “ehrlichiosis” may be broadly applied to several different infections. Ehrlichia chaffeensis and Ehrlichia ewingii are transmitted by the lonestar tick in the southeastern and southcentral United States. In addition, a third Ehrlichia species provisionally called Ehrlichia muris-like (EML) has been identified in a small number of patients residing in or traveling to Minnesota and Wisconsin; a tick vector for the EML organism has not yet been established.
So, in addition to anaplasma, and the two ehrlichias, there is a third one. Arkansas is pretty close to MO, where ehrlichiosis is well established.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Update -- Patient is checking himself out of MAYO tomorrow AMA (against medical advice). Flying back home to Arkansas.
Mayo never did diagnose anything. The bone marrow biopsies show that he is producing platelets but something is destroying them.
I have spoken to hubby's former LLMD in NC and doc is going to be the patient's LLMD.
Please pray that David has a safe flight and that he can get an appointment with the LLMD ASAP.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Judie
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I'm so glad they're going back home.
So Mayo couldn't figure out what was causing the problem and couldn't be open to other possibilities. It's ridiculous that leaving was considered AMA
What's the patient SUPPOSE to do when an expensive hospital visit isn't helping, just stay there like a prisoner while the hospital rakes in the money?
I hope they get help with the Lyme doc you're connecting them with and please keep us updated.
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nefferdun
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I hope the LLMD can determine what is wrong with him.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Razzle
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Glad they are going to consult an LLMD.
Even my local Allergist (definitely NOT LL) suggested to me that something was killing my Lymphocytes after they were formed in my bone marrow (normal bone marrow bx; blood lymphocyte levels chronically low).
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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GretaM
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Praying for David.
I am so dissapointed in the robots at mayo. They need reprogramming Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Patient released from Mayo on 1/29. Since then has needed more platelet transfusions. Also RBC and WBC have dropped again since Levaquin was stopped. Mayo docs stopped steroids and put patient on rituximab which is an immunosuppressive med and not really a much better option.
If anyone wants contact info for the patient send an email to me.
Seibertbb (at) yahoo (dot) com
I will be meeting the patient and spouse on 2/11 when they have an appointment with hubby's former LLMD.
Met David and Alisa at LLMD office. The doc and the couple all asked me to sit in on their appointment. That was a strange experience, but very interesting.
I feel like the patient is in really good hands.
Doc wants patient to start on doxy and ordered lots of bloodwork and testing. Plan is to treat lyme and eventually bart and babs empirically (based on clinical diagnosis) regardless of future test results.
Went to lunch with the couple and then they headed back to Arkansas. Plan was to drive 8 hours today to Nashville and then the final 8 hours tomorrow.
Patient has 2 more scheduled IV treatments with ritaxin (a cancer drug used for rheumatoid arthritis also) which is an immunosuppressive med. Patient has not made a final decision at to whether to do those 2 last treatments. WBC extremely low although platelets have improved at least temporarily.
Local hematologist still wants patient to have spleen removed although patient is very much against that.
Please pray that David and Alisa have a safe trip home and that he makes the right decisions to get his health back on track.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Sorry, I didn't read the whole thread, but try strengthening the body. Juicing, PEMF, acupuncture, then maybe anti-malarials with heparin. Probably a blood born parasite.
Posts: 697 | From CA | Registered: Dec 2011
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If the patient hasn't done so already they should check out the platelet disorder support association website. PDSA. Great discussion group, lots of information, very professional website founded by a person who had low platelets.
They could definitely use more lyme awareness info on their sight though. They don't really feature the relationship between Lyme and low platelets anywhere besides indirectly mentioning that bacterial infections can cause low platelet issues on their "other possible causes" page.
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