posted
Our new LLMD has suggested our 12 year old likely has EBV in addition to Lyme due to the elevated monocytes in his blood work.
Is there anybody out there who has successfully recovered from Lyme with the Mono co-infection? Did this delay your recovery?
We have been treating my son since 2004, nearly 2 years on IV abx. We are running out of money & options. Help!
Posts: 81 | From Iowa | Registered: May 2007
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My titers for EBV are through the roof. I consider myself healthy and active. I take olive leaf and grape seed extract daily..
I hope this helps,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Deseret Biologicals has a homeopathic series remedy for EBV. It costs about $50. You have to get it from some kind of medical or naturopathic professional.
Their series remedies are very powerful. They also have a good one for Bartonella and for Borrelia.
I like them because although they can cause a powerful herx, they don't have other side effects or interactions, and don't promote candida.
These kinds of homeopathics, isopathics, and nosodes are state of the art treatment in Germany.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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WildCondor
Unregistered
posted
Once you treat the Lyme...the EBV should go back to normal. Might need some valtrax or Valcyte but treating your immune system is the best way! Most of us have high EBV counts and they go back to normal once you treat the underlying bacterial infection.
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First, I am so sorry that your son has been sick for so long at such a young age.
Have you had his EBV tested? If his IgG is high, than putting him on Valtrex may lower the EBV levels enough to get the Lyme and EBV under control.
However before you start him on antiviral treatment, make sure you rule out the most common reasons for lack of improvement including:
Co-infections: Even if tests are negative, discuss with your LLMD possibility of co-infections based on symptoms. Dr. Burrascano has recently emphasized Mycoplama as a major hinderance to improvement.
Heavy metals: Very common with Lyme patients. The provoked urine tests are supposed to be the most reliable because the proving agent (ie. DMSA) will pull any metals out of the tissues, which will then be released in the urine.
Mold and neurotoxins: I'm not sure what the best tests are. I got the Mold panel from Esoterix. Many patients are finding that cholestyramine (and various alternatives) have lowered their neurotoxin level enough to get improvement with their Lyme and/or co-infectinos.
Immune system suppression: All the above issues will the suppress the immune system, making recovery/remission with abx more difficult. Have you put your son on any immune boosting supplements or general detoxifiers (eg. chlorella). ANYTHING that can lower the toxic load gives the immune system a better chance at working with the abx to eliminate the Lyme, co-infections, and viruses.
If you haven't already, you might consider taking your son to a naturopath to address any of these and other issues that may be hindering his recovery. The additional testing and adding a practioner will cost more money, but may be the key to your son's recovery. If you can uncover and address any additional issues soon, you will save money in the long run on the cost IV treatments and related MD bills.
Best to you and your son,
Erica
Posts: 408 | From California | Registered: Apr 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Bejoy, just a FYI, I've recently seen the Deseret Biologicals EBV drops for $12 a bottle, not $50. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
My LLMD and other MD's have told me that the large majority of the population test positive for EBV, even my doctors do.
My LLMDs/MDs believe that bartonella and co infections are very suppressive to the immune system. Once you can get those under control, the immune system should bring down the titers.
I had EBV titers really high and recently it fell back into the normal range but I feel no better or no difference in symptoms/severity.
Posts: 458 | From Miss | Registered: Mar 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
My doc insisted via ART testing it's a big problem for me
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Deseret has two different things for EBV. One is a bottle of drops that you can get for $12 but the other is a series remedy with several vials which is the $50 that bejoy was talking about.
Just wanted to clarify that for the person asking about possible treatments.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
OK, I'm lost as my doc charged me $25 for just the 1 oz bottle. I later found it online for $12. Which is better? The vials or bottle?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I honestly don't know which is better. I personally haven't used the EBV ones. I just saw that there were two different ones that can be found online for those prices. I know they have the series remedies and the individual bottles but I don't know what the difference is or if one is better than the other.
Hopefully someone else can answer that for us.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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posted
Manuka honey (must be the active form). I just treated my daughter with an acute case of mono and she bounced right back. (I can't guarantee the same for your son but it's worth a try).
Posts: 984 | From San Diego | Registered: Nov 2006
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Lauracin..."monolaurin" from coconut. Fights viruses.
Posts: 1009 | From NJ | Registered: Aug 2009
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
My new LLMD says just the opposite - my high EBV and HHV6 titers are aggravating the Lyme. She put me on some homeopathics and told me to add Lauricidin. She wants me to add doxycycline to attack the mycoplasma pneu. Treating everything at once should improve my condition. Isocort is helping my adrenals, and overall, I am doing a bit better.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
My LLMD has put me on LymPlus by Researched Nutritionals. It is supposed to eliminate EBV and also has factors for lyme. It is also supposed to give you immunity to future EBV exposure as well. I'll be taking it for 18 months - one a day for three months and two a day for the rest.
Researched Nutritionals also has a product specifically for EBV. You must be a health care pro to deal with them.
Sheryl
Posts: 258 | From Spokane, WA | Registered: Oct 2008
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posted
I'm so confused. There is a lot of good info here but I'm not sure what to believe.
I also have EBV, mycoplasma and HHV6. I just made a list of 6 different treatment options from this thread.
I am already on about 12 supplements. When do all these abx/supplements/herbs just become overload for our systems. Is it possible to take too MANY supplements?
How do you pick and choose which of all these meds to use? I'm guessing it is just trial and error per person...no wonder it takes years to get better
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
And my LLD told me not to worry about my off the chart high EBV titers.....
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
TxLymie~ Look at all your lab results and treat what is most obviously wrong. If you have very high antibody titers to HHV-6, then treat that. If mycoplasma is higher treat that first. Then add in treatments for the other things at 4-6 months intervals, or whatever your doctor decides.
I'm treating 6 different pathogens (besides lyme). We look at my antibody titers each time, and adjust the medications accordingly, changing one thing at each appointment.
I have seen good improvements in my health by treating the HHV-6, EBV, VZV and enterovirus. We are still working on HSV1, Cpn, and enterovirus.
I take very few supplements.
Tracy9~ I'd worry about off the chart high EBV antibody titers. I'd also get checked for HHV-6 and enterovirus.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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