I know this is somewhat the wrong place to ask, but I am not looking for a lyme doctor (totally) so I didn't want to put this in the "searching for a doctor" area.
First the story: I have had neutropenia (severe/low blood counts) since I was 12 years old and have gone through a BUNCH of different testing to find out the cause. I've had two bone marrow biopsies just recently that just shows hypocellularity (low cell counts). I've even been to Johns Hopkins per the advice of my hematologist to see if they could find out the cause and they were not able to find it. They did many, many tests and were surprised when everything came back negative. They thought for a long time I had a fatal genetic blood disorder and tested me over and over and over for that. It kept coming back negative, but then they'd test it again and again and then they took out a chunk of my skin just trying to see if that would show a positive since the blood testing wouldn't. But still came back negative.
After a horrible experience with them, I am still at a loss what could be the cause of my extreme long-term neutropenia and very low white blood cell counts. My lyme doctor hasn't been very helpful with it and thinks that maybe it's just the way I am. Which I do NOT agree with.
I've done a lot of research, and there are many things, especially viruses that can cause neutropenia and severe neutropenia. Johns Hopkins tested me for a few viruses and they were negative too, but I know that viral testing is just as inconclusive and unreliable as lyme and co-infection testing.
What I need is to find a doctor that will treat me with anti-virals without HAVING to get a positive viral test. And I am not sure where to find one. I've also asked my LLMD to treat me with anti-virals and he wasn't too keen on it and said that he didn't think that viruses could cause long-term neutropenia and problems with the blood. But I am pretty sure they definitely can! I found a list of many things that can cause severe neutropenia and most of things on that list are viruses: http://www.fpnotebook.com/Hemeonc/ID/InfctsCsOfNtrpn.htm
What I am asking from anyone out there.... do any of you know any alternative or integrative and open-minded doctors in Maryland or around the Maryland/DC area that treats you for things that you don't HAVE to get a positive for? Or, better, a doctor who has treated you for viruses without a positive?
I also want to be tested and treated for KPU/HPU as well as viruses.
You can PM me with info of a doctor you might know that could be helpful to me.
Thank you!
Posted by Remember to Smile (Member # 25481) on :
Sorry you've been having such a rough time.
I'm not familiar with neutropenia.
imho, Johns Hopkins is all media hype, and no medical help. Dangerous place, actually. I wouldn't go there with any health concern.
I personally know a man who had his good eye operated on (and damaged) rather than his injured eye. And a long-time friend was severely disabled when a Johns Hopkins surgical team left a sponge in her stomach. Couldn't eat anything but ice for many months.
Johns Hopkins staff cannot get you well if you have Lyme disease and/or co-infections with other tick-borne illnesses. There are no LLMDs there, just blind ducks.
Posted by disturbedme (Member # 12346) on :
Thanks Remember.
I knew when I went there that they weren't good for lyme disease, but I was going there because my hematologist couldn't figure out what was wrong with my blood issues and suggested I get a second opinion from Johns Hopkins just because.
And all I really needed was them to do a bunch of blood testing to see if they could find anything wrong with my blood problems. I didn't need any surgery or extreme things like that, thank God. If I did, I don't think I'd want to go to them then.
But they couldn't find out what was wrong, so I'm *still* searching on my own and I've come to the conclusion that it's viral or there's some sort of bug causing my blood problems. And now I need an open-minded doc to treat me for viruses and other things without HAVING to have a positive test to do so.
Posted by Hoosiers51 (Member # 15759) on :
You might want to try searching for CFS doctors, because a lot of times they will try using antivirals.
Maybe check out CFS sites and try to find some kind of list. I think that would at least be a place to look, whether or not you fit the "CFS" definition.
I would think they would be the most open-minded and most willing to experiment. Because I'm assuming you're looking for someone that can prescribe? So I would avoid the natural clinics for CFS...go with someone that uses antivirals.
You could also try going the XMRV route.
Good luck!!!
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by disturbedme: And now I need an open-minded doc to treat me for viruses and other things without HAVING to have a positive test to do so.
Most docs are going to be leery of getting sued for treating a disease for which they have no proof.
What happens when you take herbal supplements that are anti-viral.
Carol
Posted by Tincup (Member # 5829) on :
Have you considered the idea that the neutropenia can be caused by some of the tick borne diseases? And these untreated or inadequately treated infections can become chronic.
Anaplasmosis, ehrlichiosis, etc?
Posted by Tincup (Member # 5829) on :
And just so you know an alien hasn't taken over my computer...
You mentioned Ho Ho Hopkins?
Well, they can kiss my grits!
Posted by glm1111 (Member # 16556) on :
Have you been tested for erlichiosis? It can cause low white count because it attacks and invades the white blood cells.
Gael
Posted by disturbedme (Member # 12346) on :
Carol, the only anti-viral supplement I've really taken is Olive Leaf Extract and I was always on so many other meds at the same time that I couldn't really notice what was causing what symptoms and if any was helping my blood levels, etc.
My blood levels have pretty much stayed constant or gotten slightly lower over the years, which is incredibly scary, as one cannot survive without a health functioning immune system and bone marrow making the right number of cells.
Posted by disturbedme (Member # 12346) on :
Tincup - LMAO at Ho Ho Hopkins. Yeah, I really didn't have a very good experience with them. I knew they were no good, but since my hematologist thought I should have them try to find out the cause of my blood cell problems, I didn't really mind since all they really had to do was a bunch of blood testing. Of course, they were not able to find anything or help me. I think, overall, they did more harm than good. They made me believe for a long time I had something fatally wrong with my blood and they made me wait months and months for the tests to come back to tell me whether or not it was something fatal. Then when they still couldn't find anything wrong, they told me they think I have some sort of congenital blood defect (even though all tests were negative) and that in the future I might need a bone marrow transplant. Which, you know, maybe I will, but I pray and hope with all my heart I won't have to.
Tincup and glm - I do know that ehrlichia and anaplasmosis can cause a low white blood cell count or neutropenia, but I've been tested for those and they were negative. I have been treated for them though and have been on TBD treatment for over three years with no change in my blood levels.
Truthfully, I'd rather my blood problems be caused by a virus because I feel like maybe that would be more easily treatable than a TBD -- since I've been treated for TBDs for over three years and my blood levels haven't budged. I feel like if treating lyme and co-infections were going to help my blood problems, they would have helped by now. I know I could be wrong, but I feel like I've also got to try anti-virals to see if that helps my blood problems at all.
Posted by longtimelymie (Member # 4093) on :
[QUOTE]Originally posted by disturbedme: [QB] Hey,
First the story: I have had neutropenia (severe/low blood counts) since I was 12 years old and have gone through a BUNCH of different testing to find out the cause. I've had two bone marrow biopsies just recently that just shows hypocellularity (low cell counts).
Sorry you are having trouble. I agree with the other posters who are suggesting your low cell counts may be indicative of ehrlichiosis. I don't even know if some of the lyme-literate docs know this. Do you have a doctor who will give you the Igenex test for ehrlichiosis? Here is the link to it's webpage explaining the different tests linked to different parts of the country. http://igenex.com/Website/# Where did you live when you were 12?
I also think you are going to have a hard time finding a doctor who will give you anti-viral meds without test results. The insurance companies, or the State could go after their license. I think getting those Igenex's HME and HGE tests would be the smartest and safest move at this point. The good thing is if you do have ehrlichiosis, doxy is used to treat it. It is not like lyme, where you have to be on antibiotics for long-term. Good luck.
Posted by mookie333 (Member # 26021) on :
I have neotropenia and low wbc's for 11 ys.
I'm 46 now, had bone marrow biopsy and neg. Duke for hematology consult...diagnosis...immune dysfunction...reason...unknown..
Tried neupogen..ouch! Now gamma globulin shots. Pos for erlichia, RMSF, but neg IGENEX...did have some pos bands tho.
We should talk! Send me a message and I can tell you my story.
Posted by mookie333 (Member # 26021) on :
oops forgot to add tested pos for EBV and HHV 6. On gobs of stuff now, can tell you who I see for treatment. But hes not close to me..
Posted by lou (Member # 81) on :
I have had low white count for the whole time I have had lyme disease. Don't think you can assume that this will go away as long as you still have lyme. Chronic infection can certainly cause chronic low wbc count.
But it is a non-specific symptom, as to which infection. My money is on lyme. I was tested for both kinds of ehrlichia and came up negative.
So Hopkins is not good for a number of things. And your result of testing coming back negative certainly does sound lyme-ish.
Posted by disturbedme (Member # 12346) on :
Well, it's good to know I'm not the only one with neutropenia and low wbc counts with lyme.
I'm just at the point where.... I thought that if it was lyme and I've been treating for THREE years with abx that I would have seen some sort of difference, but I haven't at all. That is why I'd like to try treating with anti-virals to see if that helps at all.
And to the people who suggested Ehrlichia and to test for that, I did and it was negative. Though I know that doesn't mean I don't have it, but I also treated for that for at least four months and had no change in blood cell counts.
Posted by troutscout (Member # 3121) on :
I currently have a Diagnosis of Specific IgA Deficiency and Neutropenia.... I KNOW its infection based. Why?
I felt my bones aching all summer long as I was NOT on antibiotics and was sliding healthwise because of it.
Now...due to a low immune response and chronic low RBC's, hematocrit, and hemooglobin .....I have developed a systemic fungal/mucus.
So....in the end I believe this whole thing was brought on by Lyme or another TBI.
Yours Truly,
Trout
btw I am using Transfer factors and Xymogen IgG 2000 to fight back. I am also back on abx because I have no choice.
Posted by mookie333 (Member # 26021) on :
I am on the transfer factors and well and Inovir, anti-viral. I cannot feel anything different with these supps. Ive been on them for 4 months now.
Do any of you do gamma globulin shots?? I don't think they do anything either.
Posted by Tincup (Member # 5829) on :
Disturbed said.. "They made me believe for a long time I had something fatally wrong with my blood and they made me wait months and months for the tests to come back to tell me whether or not it was something fatal. Then when they still couldn't find anything wrong, they told me they think I have some sort of congenital blood defect (even though all tests were negative) and that in the future I might need a bone marrow transplant."
DITTO! I had a similar experience. Lived a LONG time thinking they might actually know what they were talking about when I was made to go there and they diagnosed a "rare" disorder that I didn't have.
I was worse off for going. Sorry that happened to you too!
As for what the cause is... and you didn't mention if it was affecting your health negatively or not.. or I may have missed that. But if isn't, maybe it is just one reason we are all different.
Nah, I don't buy that line I just fed you either.. and I'd keep searching too. That is how I realized I had Babesiosis. One consistent blood work reading (RDW) that kept coming back way off the normal limits over the years and no one knew why.
Sorry I don't have an answer... but I know you will continue to search. If I come across something, will share it with you.
Posted by disturbedme (Member # 12346) on :
Mookie - nope, I've never been put on any kind of shots for this. Thankfully, my blood levels haven't been THAT low that I've needed it. My blood levels are VERY low, yes, but I guess they aren't at the requisite you need to get those shots.
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