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Anyone know a Lyme Literate Hematologist


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Is there even such a thing as a Lyme Literate Hematologist anywhere in the US? I know there's a Lyme Literate Endocrinologist in my area so I figured I'd ask! This is in continuation from my dad's saga--dx'd w/ LD, Ehrlichiosis, probable Babesia and possible Bartonella. Clinical dx of course. Quest WB negative but CD 57=20! He went to the Mayo Clinic ER yesterday b/c he is still vomiting at times and so weak and achey. He was dehydrated and needs a HIDA scan for his gallbladder...but they don't scan on weekends. LLMD wants a hematologist on board to rule out Leukemia and Lymphosarcoma but Mayo Clinic scares me b/c they aren't Lyme Literate. The ER dr. was all ears and knew of Ehlichia but said he must have picked it up @ my house in PA since my kids and I are sick w/ LD and she doesn't see much Ehrlichiosis N. FL...altho all websites say it's found predominantly in the south. Who knows??? Don't care where he got it, just don't want Mayo Clinic giving him the run around since Ehrlichiosis mimics Leukemia....but it also can lead to cancer too :( Today my dad woke up with that terrible ear pain I get from LD. It feels like someone has shot a gun off into your ear. He also has bad jaw pain. His symptoms scream Lyme but his platelets went from 54 to 44 this week so I am very scared. He's been on Doxy for a 10 days now. I am also worried that if Babesia is a major player, shouldn't he be treated for that too?

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I don't know of a Lyme-lit hematologist, but wanted to suggest that ILADS might be able to refer you, if there is such a thing. I'm really sorry about your dad. I hope you are able to find help for him soon and get him on the road to recovery.

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Thanks! I just emailed ILADS. It's amazing how you lose clarity when knee deep in Lyme with your loved ones. After I read it, I thought, "DUH! What a great idea!" He's actually doing better joint pain/herxing wise. He hasn't vomited again. I have a theory but only a theory...LLMD said Lyme + Ehrlichiois + probable Babesiosis and Bartonella. He's only on Doxy, supplements and detox stuff. He totally has clinical symptoms of Babesia. Shouldn't he be on a drug like Mepron in addition to an ABX? Dr. Seemed surprised he was still vomiting but I have a lot of people vomit from herxing OR from the co-inf going untreated. Could the Doxy be targeting the Borrelia and Ehrlichia but not really the possible Babesia thus, the cycle of symptoms every 4-6 days as bacteria dies off? Am I grapsing at straws b/c the C word scares me??? Maybe. But I can't let go of his CD57=20! And he has sooooo many Lyme/co-inf symptoms.

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I don't think you are grasping at straws. I don't know much about Babesia, but it couldn't hurt to discuss your suspicions with the LLMD. I don't know for sure, but I don't think doxy is used for Babesia. I'd think it would be better to try treating the Babesia now, than going through cancer treatments which are much harder on the body that abx, only to find out it was Lyme/Babesia after all.

 

Glad to hear your dad is feeling a bit better!

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I am on Dorxy 'Doxy' and Clindomycin currently for Babesia treatment. WBC typically drop initially when treating Lyme especially if Ehrlichiosis is involved 'worse before better'. There will be cross over effect for co-infections with antibiotics. He actually seems very sick and will need to get his bacterial load to come down and through some of the major herx'ing before hitting him up too heavy. Definitely address platelet drop with LLMD.

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Thanks SF Mom! I was thinking of PMing you to ask you but you answered b/f I had a moment to PM u. So my dad went to see his family doctor (a Mayo Clinic GP). My mom had scheduled this appt over a month ago when they were perplexed by his symptoms. With all the craziness of him getting sicker, she forgot to cancel it. The trip to Mayo Clinic ER over the weekend for what he thought was his gallbladder bugging him, may just be the co-inf's causing belly tenderness. I think he originally thought it was gallbladder and the thought hasn't left his head. An ultra sound shows no stones. The ER dr. said she didn't feel an inflammed gallbladder from her exam but still could be low functioning...only a HIDA scan will tell. Interestingly enough, my dad's GP felt the his LD and co-infections could definitely be causing all this and not Leukemia. She still thought he should see a hematologist and offered him to see a Mayo Inf. Disease Dr. b/c the ER dr. recommended it. My mom very nicely said that she was concerned the inf. dis. Dr. would say he doesn't have evidence of Lyme Disease and send them on a wild goose chase. This GP said that if they had a good LLMD they trusted to keep at this with him. She was politically correct how she answered with saying, "If you ever want to meet with an inf. dis. dr., I can arrange it, but I think you are on the right track." Wow! That was big of her!

 

 

My mom then talked to our LLMD to bring him up to speed on the weekend ER trip, our worry that Erhlichiosis mimics Leukemia, is bone marrow biopsy able to distinguish cancer from immature blood cell from the Ehrlichiosis, adding in meds for Babesia, etc. Now our LLMD said he never heard that Ehrlichiosis causes the cells to appear Leukemia-like. He asked my mom to have me fax my research b/c he was very interested. So I faxed that today for him to read. I was glad to hear he was open to learning or at least reading what I found. He also commented that he only started with Doxy b/c he feels 2 abx's would make him herx so badly...which is happening anyway so I agree SF Mom...I think he has a very high bacterial load. My dad felt that the cholestyramine wasn't working enough for detox so he had added in 2 charcoal pills/day. Recently he added 2 more charcoal pills/day and it has helped. He had a lot of herxing this AM--lots of rib and leg pain. I suggested he add in 10 drops of Burbur too. Think that will help??? :huh:

 

Here's a portion of the research I found:

 

"Once a human or animal is stricken with Ehrlichiosis, white cells die off faster than the bone marrow can replace them. These dead cells migrate primarily to the spleen which enlarges as a result. Frantically, the bone marrow works to form new, healthy cells. In its haste, it sends out immature cells which do not work efficiently. Quite often these immature cells are almost indistinguishable from those seen in leukemia patients. Advanced Ehrlichiosis is, in fact, often misdiagnosed as leukemia or lymphosarcoma."

 

Since that was written, indications have grown stronger that Ehrlichiosis either causes cancer or sets up the conditions for cancer to develop. It has been suggested that dogs ostensibly cured of it should be tested for cancer four years after titering clear as so many seem to develop cancer of one form or another in that time frame. This is no big surprise to those of us who have seen our dogs come down with serious illnesses after – or during – their infection with Ehrlichiosis since, with an immune system that is essentially out of commission, the dog is defenseless.

 

So we're still on the fence. Do we send him to a hematologist for a bone marrow biopsy? Will the results be accurate? I am still working on getting the name of a LL Hematolgist. An ILADS rep mentioned one in St. Paul, but she hasn't gotten back to me w/ his/her name.

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