Lyme Disease + HHV6 + EBV

A

anncavan

Senior Member
Messages
107
Location
San Francisco, CA
I've recently been diagnosed with Lyme Disease about 2 years after my CFS (EBV/HHV6) diagnosis. I had a PICC line inserted a week ago for IV antibiotics, I'm on Unacyn 3gm, 3 x daily by IV and oral Flagyl 500mg, 3 x daily to treat the Lyme. And I've continued my Valtrex 1gm, 4 x daily for EBV and Valcyte 450mg, 2 x daily for HHV6.

My CFS doctor is Dr. A. Martin Lerner in Detroit, MI. However I live in San Francisco, so my Lyme doctor to oversee the PICC, etc is Dr. Steven Harris of Redwood City, CA.

Curious if there's anyone out there with a similar diagnosis following a similar protocol...
 
H

herbqueen

Messages
45
lyme

How are you doing? My history is was Fibro diagnosis 1998, optic neuritis 2006- now have severe neuro lyme-I've not treated with antibiotics but did every alternative--/diet and now I am housebound/really ill. MS symptoms plus whole lot more-but MRI is normal and neuro's say they don't think it MS. just 1 week of flagyl/3 weeks diflucan in late november to treat fungal -was following that theory sent me on a huge downward spiral 100X worse- still spiraling downward. I already had neuro lyme at that point. now my whole body is weak/shaky even hard to hold up, dizzy, total insominia, muscle weakness, numb on left side spreading to right , jerking and twitching all over, difficult speaking, swllowing at times. pretty rough shape.

Seeing lyme doc dr. H in new york 1st week of May- but so sick now and not sleeping since this neural explosion from hell. I'm 48- you are wise to treat early and look alot younger than me so you should stand up to abx treatment well.

Keep us posted on your journey. I need to do something to turn this around-just not sure what that is yet.
 
H

herbqueen

Messages
45
See my thread on colostrum--in treatment section

Any thoughts on colostrum, TF for lyme and coinfections and broad spectrum. I also test positive for EBV had not been tested for other viral stuff , myco etc. I do test positive for lyme according to IGENX-bands 41 and 31.

Has anyone tried Transfer Factors? Are they based on colostrum?

Thoughts on stem cell treatment for immune/lyme/neuro issues? I wish there was more data on the stem cell treatment outcomes-seems like there is no central place to go for that-for CFS/MS/Lyme etc etc.
 
Kati

Kati

Patient in training
Messages
5,497
anncavan said:
I've recently been diagnosed with Lyme Disease about 2 years after my CFS (EBV/HHV6) diagnosis. I had a PICC line inserted a week ago for IV antibiotics, I'm on Unacyn 3gm, 3 x daily by IV and oral Flagyl 500mg, 3 x daily to treat the Lyme. And I've continued my Valtrex 1gm, 4 x daily for EBV and Valcyte 450mg, 2 x daily for HHV6.

My CFS doctor is Dr. A. Martin Lerner in Detroit, MI. However I live in San Francisco, so my Lyme doctor to oversee the PICC, etc is Dr. Steven Harris of Redwood City, CA.

Curious if there's anyone out there with a similar diagnosis following a similar protocol...
Click to expand...

So sorry Ann for your recent lyme diagnosis... do you think you had it all along? How are you dong with the meds? Hope all is well for you. I also hope for you the Picc has been inserted higher up in the arm- more convenient!

Did you test for XMRV as of yet?
:hug::hug::hug:

Kati
 
A

alice1

Senior Member
Messages
457
Location
Toronto
Good luck ann with the lyme treatment..I'll be seeing a LLMD in a few weeks and I'm very excited actually.
I've had ebv for 23 years and when I came back from Dr Klimas(I was disappointed she didn't test me) I kept wondering what was keeping my system from doing it's job..I came up with 3 answers and one of them was Lyme.I want to try and eliminate possibilities.
Please keep us posted on your journey.
I'll let you know what my Lyme doc says.
 
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herry.james

Guest
I'm not really sure about the question but I do have lyme disease and as does my mother. Things that could help to make the antibiotics easier on your stomach and you would be a probiotic there is one called Culturelle it's natural and you should take this 30 minutes before you eat and take your antibiotics. Best of luck :)
 
C

Cloud

Guest
Hi Anne, I see so many positive things going on for you...First of all, your getting on this early when your prognosis for treatment success is high......chronic Lyme is extremely difficult to treat and many people lose the ability to tolerate the meds over time. Your in with a great MD (Dr Lerner) who is willing to go big gun treatment....It's hard to find docs willing to do that for Lyme. Also Steve Harris is one of the best LLMD's on the west coast. You may just have Lyme, not CFS.....which means that you may get well with treatment. I have friends who have. I think you have good reason to be hopeful Ann.

I am currently on IM Bicillin and PO (by mouth) Biaxin for Lyme and Co, and having good results. I am also taking Methylation support, Monolaurin and about to add Artemesinin. I am one of those people who cannot take Immune meds which is another reason to know xmrv status when creating a treatment regimine. Bottom line....the goal for me is to help my immune system to get the upper hand again so that it can keep these infections down.
 
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herbqueen

Messages
45
methylation support

Can you share what you are using for detox/methylation support-I am one who disease has progressed too long-- but would like to give abx a try-but need really good detox since Ihave imparied phase I/phase II liver detox (glucorniaton) My phase I is too fast phase II too slow.

You guys are wise to attack this while you are young and newly diagnosed.
 
A

alice1

Senior Member
Messages
457
Location
Toronto
Herbqueen I don't know when you were diagnosed but it was 1984 for me.Maybe 10 people on the planet heard of cfs/ebv and m.e..
It's come a long way since then and will even get better,so you hang in there and keep trying.
 
C

Cloud

Guest
I've only recently begun working on the methylation issue again. I have started lightweight with Dr Kunin's Ola Loa vitamins, and meanwhile I am researching other known methods such as RichVanK's simplified protocol. Dr Yasco's protocol is uneccesarily complex for my taste. Knowing I would have trouble tolerating the abx is what motivated me to get serious about working on this again. I have known it to be major player in my illness since the start 16 years ago....
 
H

herbqueen

Messages
45
thanks

I was diagnosed fibron 1998-now symptoms have morphed into MS type -I feel like I'm losing all function/motor function which is terrifying. Neuro says no MS and CFS(not that i want a MS diagnosis). BUT these seems beyond CFS. I've been on cliff dive since November just trying a few drugs-but declining neurologicaly before hand and knew I need to do something, I can take pain and fatigue, but the numbness, vision loss, motor control, vision ,swallowing speaking , head pressure, jerking, weak neck , total insomnia etc is unbearbable. I know I have detox issues-i feel i have no choice but to try abx but terrified where that will put me since so so sick now. Don' t know what to do. I was functional but declining befor flagyl/diflucan in November .NOw it's tough for me to make it through each day./totally nonfunctional (and terrified). Looking everywhere for solution, Maybe stem cell? I don't know anymore. Wish I could have treated for lyme early in diagnosis 12 years ago when I was younger and stronger and it wasn't neuro.
 
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hyperbaric1

Guest
Yes we did and Used Harris We also used HBOT to recover I would love to speak with u

hyperbaric1@earthlink.net
anncavan said:
I've recently been diagnosed with Lyme Disease about 2 years after my CFS (EBV/HHV6) diagnosis. I had a PICC line inserted a week ago for IV antibiotics, I'm on Unacyn 3gm, 3 x daily by IV and oral Flagyl 500mg, 3 x daily to treat the Lyme. And I've continued my Valtrex 1gm, 4 x daily for EBV and Valcyte 450mg, 2 x daily for HHV6.

My CFS doctor is Dr. A. Martin Lerner in Detroit, MI. However I live in San Francisco, so my Lyme doctor to oversee the PICC, etc is Dr. Steven Harris of Redwood City, CA.

Curious if there's anyone out there with a similar diagnosis following a similar protocol...
Click to expand...
 
A

anncavan

Senior Member
Messages
107
Location
San Francisco, CA
Feedback

Hello everyone. Thank you for all of the ideas, shared experiences and feedback! I'm embarrassed to admit I posted this, and then couldn't figure out how to get back to it! ha! Eventually I made my way back. To answer some of the questions... I'm 32. Response to antibiotics has been 50/50. Before the PICC I was on augmentin 875mg 4 times a day for about 6 weeks. I herxed bad, twice. Extreme joint and muscle pain. Worse than anything I've ever experienced with "just CFS" and I literally just had to sleep and stare at the ceiling. I'm blessed in that I am able to sleep.

Got the PICC in the inside of my left bicep and started Unacyn. 2 bags to start, moved up to 3 within a few days. Started Flagyl with the IVs and have been battling it ever since. I rarely take the full dose 2 days in a row. About 2 weeks in I started to get a little hyper, which turned into me never shutting up, laughing hysterically for no reason, then suddenly crashing. It got scary so I called Dr. Lerner. He said Unacyn can cause this manic sort of behavior. He determined it was cerebral toxicity and asked me to stop the IV. So I haven't taken an IV drip since Friday 10am. I'm supposed to start back on Monday morning after calling him. What a wonderful break it's been! I don't smell like meds or feel like there's poison in my body. About 36 hours being free from it I actually ordered take out, walked 5 blocks to pick it up and 5 blocks back. I've paid for it ever since, but it was amazing to feel normal for a short time.

I did see Dr. Harris Thursday (before realizing I had the mania issues). He is concerned I'm not feeling immediate effects of the IV. He thinks I should be looking at at least 6 months onthe IV. Dr. Lerner says 6 weeks only, then back to high dose oral antibiotics. So, now I just have to see how the next few weeks go, and have the doctors fight it out. :) I've been with Dr. Lerner for a few years and trust him with my life. He's THE expert in CFS in my mind. But Dr. Harris sees Lyme patients like me everyday and is extremely impressive as well. Not sure what the near future will bring...

To be continued...
 
Kati

Kati

Patient in training
Messages
5,497
Wow, Ann, what a journey... Sorry for the troubles but I am glad that you got a picc and it looks like it's very well located (though I hope it doesn't bother you in the inside of the arm. I had a bit of a laugh with you saying you got some laughing hysterically for no reason at all- while cerebral toxicity is serious in your case, I wonder if more drugs could please give this side effect? We'd have a happier world!!!

Keep us posted, glad you managed a nice walk out-

Hugs Kati
 
A

anncavan

Senior Member
Messages
107
Location
San Francisco, CA
Hi @herbqueen,
I visit a blog about a girl with severe lyme that has gone to india for stem cell. It's fantastic: http://monicasindiaadventure.blogspot.com/

From that I've linked out to websites, etc. From what I understand Dr. Harris (LLMD) in Redwood City has sent patients there with success. I asked him about it and he said he wouldn't talk about going down that path until I've tried antibiotics (via IV) unsuccessfully for at least 9mo. I don't know that it's something I'd consider. I just happened to be talking with a Lyme patient at another doc office who mentioned young women have seen the most success with the treatment. Food for thought I guess...

herbqueen said:
See my thread on colostrum--in treatment section

Any thoughts on colostrum, TF for lyme and coinfections and broad spectrum. I also test positive for EBV had not been tested for other viral stuff , myco etc. I do test positive for lyme according to IGENX-bands 41 and 31.

Has anyone tried Transfer Factors? Are they based on colostrum?

Thoughts on stem cell treatment for immune/lyme/neuro issues? I wish there was more data on the stem cell treatment outcomes-seems like there is no central place to go for that-for CFS/MS/Lyme etc etc.
Click to expand...
 
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