posted
Hi im new here and just learning. i went to see this lyme doctor in MA and I ws told I have lyme and would be treated based on my symptoms. I am being given clarithromycin and Plaquenil. Mr. D is very well known im sure, I saw him on the docu. Under our Skin. Im worried that I might not be getting the best treatment, and this is my life im talking about so I want to make sure that all bases are covered
Dr. D seems rather conservative compared to Dr. Burrascano. He told me that Babesia is never long term, yet I have found an article that kind of says it is I think here:
and another study I cant find at the moment, it was done in New York.
Has anyone heard of Chronic Babesia?
Also if anyone can answer any of these questions, Id greatly appreciate it:
1) I had low eosoniphils in my blood, anyone else have this? evidence of anything?
2) Is there any thought that Lyme or coinfections can be spread sexually?
3) why do some doctors treat a whole family of people when one is diagnosed if lyme usually isnt contagious to my knowledge?
4) If you have lyme disease and were infected with the Herpes virus at any point, will this make Lyme worse? do people have to take antivirals?
5) How often do antibiotics need to be switched with Lyme?
6) Does it depend on how long youve had Lyme to get an idea of what recovery will be like? like if youve had it for say 7 yrs, would your chance of full recovery be less than someone diagnosed after a year?
7) can you treat lyme and all the coinfectios all at once? i am taking plaquenil and clarithromycin. are coinfections being treated with this regimen?
8) what are some things that cannot be reserved even after treatment? if lyme has affected your nerves can this be reversed?
9) How do you interpret a lyme western blot w/ reflex from quest? my dr. says i have lyme based on this test. this is basically what mine looks like:
Lyme Disease Antibodies (IGG, IGM) Western Blot Lyme Disease AB (IGG) western blot- negative 18 KD IGG BAND non reactive 23 KD IGG BAND non reactive
then it goes on to list bands like that saying "non reactive" for some and "reactive for two.
at the bottom it says blots that have 5 or more of the 10 significant bands are considered pos. for antibody to Lyme.i dont get this test.
10) can lyme disease cause small bowel bacterial overgrowth in the intestines, which is the cause of my IBS. will this be treated with antibiotics for lyme?
11) does lyme make it easier to catch other things like viruses? do you have to have a low immune system for this to happen? if so, how do i test my immuen function? and anything else i should test for?
12) is there any lab that my state insurance will cover (not igenex)?
13) are there any newer tests that are more accurate to discover lyme? should an mri of my brain or a spect scan be done? what will results show if pointing to lyme?
14) can cats spread chronic lyme disease or coinfections from scratching you (cat scratch fever?)
thanks in advance to all who can answer my questions. still trying to learn as much as I can.
****edited out the name of the LLMD**** Please see rules of Lymenet
posted
You need to read the rules of this forum. Doctors full names and locations are never used. Please edit your post to use only his initial (Dr. D) and state, not city. You can edit by clicking on the symbol with the page and little pencil.
You have asked a great many questions which would take a book to answer. Might get more replies if you shortened the list, and asked the other questions later in individual posts on a specific topic.
Posts: 8430 | From Not available | Registered: Oct 2000
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2) Is there any thought that Lyme or coinfections can be spread sexually?
---Some say it can be. No proof yet.
3) why do some doctors treat a whole family of people when one is diagnosed if lyme usually isnt contagious to my knowledge?
---Many families are exposed to the same environment, same ticks or fleas. Lyme can be passed on congenitally and thru breastfeeding.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I'm sensing a little anxiety about this illness.. I don't blame you, it's alot to take in when you're first learning about it. There are many thoughts on the questions you have asked. You may find it helpful to use the search option to look for some of those answers.
Many are started on Clarithromycin (biaxin) and a cyst buster like Plaquenil. I don't think your doctor is unreasonable in starting you on this protocol but the truth will be in how you respond. You should see some changes in the coming months and if not you might want to re-assess the protocol.
Just be sure to follow up with good detox and liver support.
posted
4) If you have lyme disease and were infected with the Herpes virus at any point, will this make Lyme worse? do people have to take antivirals?
----I don't know.
5) How often do antibiotics need to be switched with Lyme?
----It all depends upon your response to the abx
6) Does it depend on how long youve had Lyme to get an idea of what recovery will be like? like if youve had it for say 7 yrs, would your chance of full recovery be less than someone diagnosed after a year?
---- It may take longer for someone who's had it longer to get well ..but you can still get well! I did!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
10) can lyme disease cause small bowel bacterial overgrowth in the intestines, which is the cause of my IBS. will this be treated with antibiotics for lyme?
----I don't know. My GI dr treated me for supposed SIBO and all it did for me was give me a terrible case of candida/yeast.
11) does lyme make it easier to catch other things like viruses? do you have to have a low immune system for this to happen? if so, how do i test my immuen function? and anything else i should test for?
----Other viruses can come to the forefront when Lyme takes over the body. And yes, the suppressed immune system is what causes this to happen. I think you can ask for the CD57 thru LabCorp.
12) is there any lab that my state insurance will cover (not igenex)?
---have no clue .. varies from state to state
13) are there any newer tests that are more accurate to discover lyme? should an mri of my brain or a spect scan be done? what will results show if pointing to lyme?
---not sure they're any better---Igenex is the best ---b. might be good if you're having a lot of brain issues c. An MRI may show brain lesions; a spect may show hypoperfusion
14) can cats spread chronic lyme disease or coinfections from scratching you (cat scratch fever?)
---they can spread bartonella.. cat scratch
--whew, I made it!!
Don't take MY answers as gospel! Many others here are more knowledgeable.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
thanks lymetoo for answering so much. I have so many questions that I know are important for me to know but it is hard to do reseaarch on my own when I haave trouble reading, which is often from migraine.
The bands that were reactive, it says on the lab slip "30 KD IGG band" and "41 KD IGG band" and thats it. were you wondering what type of band it was? becuase this lab test does not specify.
So which coinfections can be chronic? are all acute except babesiosis? perhaps there is just not enough evidence to say if they are all chronic yet? i read Dr. Burrascno's guidelines and I dont remember reading whether or not coinfections can be chronic or not.
If lyme or co-infections can be sexually transmitted, then im guessing at least lyme might be trnsmitted like syphilis, since they both are spoirochete bacteria? which would mean that safe sex would mean condoms and no oral sex. how dull. but i guess its for the best.i hope it can be proven whether or not which can be sexually transmitted someday.
i think i read that a type of bartonella can be transmitted through pubic lice which would make it very easy to get it especially if the person your having sex with had enough pubic hair i guess.
doesnt anyone know how the coinfections are treated? can i really just start off with this treatment or do i need to address the coinfections? i think i read somewhere that lyme may not improve unless any coinfections are treated either first or simultaneously.
Posts: 723 | From boston,ma | Registered: Jan 2011
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Quest usually misses important bands.. well, because they don't TEST for all of the bands.
I believe babesia can become chronic... or at least very hard to get rid of.. same with bart.
Sure, GOOD LLMD's know what drugs to use to treat coinfections. You need to address coinfections within the first few months of Lyme treatment. Don't wait too long or you will be spinning your wheels.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Awesome job Lymetoo!
I believe any infection can become chronic if you don't take care of the organisms/proteins that can hide them....
Including the old fashioned parasites that antibiotics do not hinder...
And biofilms that prevent penetration.
Yeast are a big hindrance in Lyme treatment.
And they have recently found Aspirin can prevent folding of even prion proteins.
So maybe some of the other barks have potential also!
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Sending you a PM.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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posted
so my bands i think were 31, 41, and 23. on the bottom of the quest lab it says 5 or more of certain bands indicates a positive result for antibodies to B. burgdorferi. Dr. D told me that I still had lyme but what would most doctors say? Would doctors who follow the IDSA guidelines say no, you dont have lyme?
well its obvious that the differing opinions of doctor is related to not enough clear research conclusions about certain questions. Sure Dr. D can tell me that Lyme has not been proven to be transmitted through sexual intercourse. but unproven is exactly the problem. The spirochetes have been found in human semen, and there is lot of speculation as to whether sexual partners can spread lyme through intercourse and whether couples can reinfect their partners if only one person is treated for a diagnosis of lyme.
theres also a study that brings to question the possibility of transmission from mites on pubmed.gov. mites were able to transmit the burgdorferi to small rodents.
Dr. D states in his protocol for treating lyme, which can be found on the internet that the IGG band 23, which i have, is unique. It doesnt indicate why anywhere. does anyone know how this band is so special?
I notice that alot of people who have chronic lyme disease here also are infected with other viruses or have diseases that have progressed as a result of their lowered immune systems. this sure seems like it would make it hard for some people with chronic lyme to know why their symptoms might not be disappearing despite long term abx symptoms, if they are infected with something other than lyme as well. i myself have traveled alot and since Im guessing that Ive had this Lyme disease for 10 years or so
the possibility that I have something other than Lyme makes me wonder. I have already been tested
for syphilis, hepatitis, other stds, and some viruses.
I have tested positive for past Hep B infection, past Herpes infection, and HPV.
So what else should I possibly test for? malaria? west niles?
so if coinfections are not addressed initially, and you have one along with Lyme, does just treating the lyme only offer ANY progress?
ok i guess thats enough questions to ask right now. i have so many. if anyone can help to answer some, it would be of great help to me. thanks to anyone for their help.
Posts: 723 | From boston,ma | Registered: Jan 2011
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I believe now that you know you have Borrelia--
the previous tests can be thrown out the door. In fact if you have had Borrelia that long you probably have them and a lot more to go with them. JMO
This is what Borrelia is capable of doing--turning off the immune system so they cannot be seen.
This is why many find after treating for a while they are multiple infected with the virus', etc.
If you had told me 5 short yrs. ago that I got something from a tick/that would cause me to be
so sick it would take several yr.s of treatment to get over it--I would not have believed you.
Because surely my CDC or someone would be warning the public about something like this!!!
But now I do!
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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