posted
I went with my Hubby to his LLMD appointment on Tuesday to ask some of my own questions about his treatment protocol.
He has been on IV Rocephin since early January, without any kind of reaction at all, with no herxing, feels the same, etc.
The Doctor feels that after being on this particular ABX for this length of time, my Hubby should have been feeling some kind of difference or change, even if very minor. He has not.
Her opinion is that patients need to herx in order for her to know if the Lyme bacteria is responding appropriately to the ABX.
She removed his IV line, and has started him on orals again, for a month trial period, to see if there is any response that way. He's on Valtrex, Minocycline, and Doxy. So far nothing yet on these either.
She told us pointblank that maybe we are treating something other than LD- I almost fell off the chair! She said there are lots of other things that can be causing my hubby's brain encephalitis other than LD.
His Epstein-Barre titer is extremely high, so she's thinking this might all be a viral thing with him. She's referred him to a LL Infectious Disease Specialist, that she says is open to LD as well as other diseases. So we see him next month.
So who knows where we stand now-we are both very confused, and my Hubby is discouraged that he might be back to square one again.
He is happy to be on orals VS. IV though, which is good.
Has anyone else been in LD treatment with no repsonse at all with ABX? I would think with true LD, some kind of herx reaction while on ABX would make sense, with all the bacteria die off going on.
A few people on here said they never herxed, but that just makes no sense to me with LD. I guess I am going with the opinion of my Hubby's Doctor.
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
| IP: Logged |
posted
It may depend on the med and dose. My theory is that bacteriostatic drugs might not produce the same reaction as bacteriocidal drugs. There is also individual responses to drugs that vary.
So not sure that herxing is an absolute sign, but if he has high viral numbers, maybe an anti-viral will do him some good. And seeing someone more experienced could help. Reserve judgement until after the consultation?
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My LLMD says that some people herx and some don't. I did oral antibiotics for months with no real improvement. Improvement came when we treated for Babesia at about 8 months. Now I am back to treating the Lyme again, so we will see.
I have heard of many people with LD that don't show any improvement until into say their 3rd year of treatment. The Ranger in "Under Our Skin" for example.
If your husband just started treatment in Jan, that is not very long to see improvement.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
adamm
Unregistered
posted
You do have to wonder, though, about people like the ranger: given that Lyme is a naturally remitting-relpasing condition, who says antiobiotics treatment had anything to do with their recovery? Not trying to dismiss abx as worthless by any means, mind you; I just don't see how in cases like those a causal relationship can be definiteively established in light of the fact that some people have been known to reach remission spontaneously.
Another possibility I think worthy of consideration is that his recovery didn't come by virtue of his treatment having been of a long duration, but possibly as a result of some new conditions that developed in his third year that finally rendered the Bb susceptible to abx (i.e. that the first two years of treatment were unnecessary .)
Sorry--again, NOT trying to be the duck here! As someone who's done over a year of antimicrobials to no avail, though, I've got a lot of questions.
IP: Logged |
posted
Don't we also have to consider strain variability/ coinfection?
Plus, I have heard of people not really getting better on Rocephin until month 6. But no change, no worsening, would make me wonder too.
Why both mino and doxy?......I have not heard of this, two tetracyclines together???
What works for different people is very different. There is no silver bullet-(except in can Posts: 554 | From Naples, Italy | Registered: Jun 2006
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Good points Adam. I guess the problem is, no one really has the answers.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
Good points, everyone-like I said, we are really confused now, but definitely NOT ruling out LD!
Certainly, the high viral numbers could be interfering somehow with his Lyme treatment. That's why he's seeing this infectious disease Doctor, who will possibly see something the Lyme Doctor is missing.
I'm certainly not judging here, and sorry if it appears that way-it just seems that the sickest Lyme patients are the ones who Herx the most, and we think my husband has had Lyme for over 2 years.
It certainly can be that he has a missed co-infection, like Bartonella, even though his tests were all negative for those. Maybe that's why we are not seeing any real progress here.
The LLMD was the one who said that this might possibly not be LD, which shocked us both. She also said that Rocephin is a pretty potent ABX, and that's why she's not happy that he has not had any improvement at all.
We also have a second opinion next month with my Sister's LLMD, who treats whole body LD, not just with ABX alone.
She will do much more extensive Lyme testing on my Husband than his current Doctor has, which may pick up something too.
Sojourner-I think the Mino has something to do with helping with brain inflammation, which my husband has. His is pretty severe.
Interesting thoughts and opinions here,and keep them coming. Like I said, this is all pretty discouraging now for us. Back to square one again.
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
| IP: Logged |
posted
Lymetoo-My Hubby's been tested for all co-infections-negative on every one.
I do agree 3 months is not long enough to see any improvement, but apparently, the LLMD sees differently.
His LLMD is one of the best in NJ-she has patients coming from all over the place to see her, and has had mostly positive feedback from all her patients. So I guess she's good......
The other Doctor we see next month will hopefully do more extensive testing on my Hubby, so as I said before, maybe she will pick up something that's being missed.
Interestingly, this Doctor is also big on seeing her patients Herx-I'll have to pick her brain about why that is next month at my Hubby's appointment.
Thanks Mike-I will keep you in mind if I need any further Doctor info!
Hopefully by the end of next month, we will know for sure what's going on. I'll keep everyone updated.
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
| IP: Logged |
posted
I went back and looked at some of your older posts. Don't know what your hubby's blood pressure is, but one med to consider that might help with the head pressure is Benicar. This med is a very strong vasodilator and supposedly also has immune modulating effects on the brain.
Hubby was having some headaches and his LLMD added 5 mg of Benicar twice a day (a very low dose). This did make his blood pressure go low and he has some mild dizzyness from that, but feels it is worth putting up with the side effects. For him he has problems with tremors and movement disorders that is aggravated by low bloodflow which means low oxygen levels to the brain.
He had an almost immediate positive reaction to the Benicar. Knew within one day that it would be helpful.
This is not medical advice, just my opinion based on hubby's symptoms.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Geneal-My Hubby did have a WB, one done by his LLMD's lab(not Igenex) All were negative, including co-infections, except for the LabCorp WB-he had a positive 41igg on that, that's it.
His LLMD thinks the 41 band is a BS band, and she was very blunt in telling us that. I had a positive 41Igm myself, on a recent LabCorp WB, and I'm really stressed about it. But I'm not worrying about myself right now.
Amanda-no WBC issues for Hubby-all normal too. As a matter of fact, his last bloodwork labs were the best they have been in a while-go figure.
Right now he could have anything from Hashimoto's Encephalopathy, to a very severe and rare from of EBV, which can all cause abnormal Spec scans.
He has to have a Spinal Tap done too, probably next month. We are not ruling out LD right now-just putting it on the back burner for now.
After we see these other Doc's next month, I'll post back to let you all know what's up. My Hubby is very stressed and depressed right now, so we are not doing too good at the moment.
Thanks for all your concern-
Dawn
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
| IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
The last time I herxed was 2 years ago when I was diagnosed.
It lasted a month and then was gone.
I have been on 8 months of IV now and have noticed no change.
I think sutherngrl hit the nail on the head by her doc saying some people herx and some don't.
Maybe your hubby falls into that category along with me...
Its good that he is at least on some orals...
Best wishes to you guys!!!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
posted
I know this isn't definitive either, but has he had his CD-57 checked? That may help point to lyme.
Posts: 453 | From TX | Registered: Aug 2008
| IP: Logged |
posted
Just a note on spinal tap. The result was not much different. Spinal tap for my husband was negative... but he still has the classical syptoms of lyme. My husband had to suffer through spinal fluid loss and it was very dangerous. Be careful. My husband had to get two blood patches to get well.
Posts: 14 | From OR | Registered: Mar 2009
| IP: Logged |
stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
high ebv is not unusual with iv abx tx remember you are killing normal bacterial flora so yeast and viruses take over. abx only kills bacteria. abx does not kill viruses valtrex is an antiviral and probably an antiyeast and antiyeast diet must be followed. could also be babs and bart. not much info provided so its hard to make any dx from the info. might want to go the mepron,plaquenil route to rule out co's i was on abx for 7 years and only really herxed the first several doses. that is also when my neuro symptoms started. i think the doc overdosed my system with neuro toxins from the dieing bb. had very few herxes during rest of treatment. i was cdc pos elisa 5.6 wb all pos except 1 and this was quest lab.
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
| IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Please do not get a spinal!!!
I was lucky and came back positive with Lyme, but the test is not necessary!
There was a recent post here about getting a spinal tap done...
posted
VB-no, my Hubby has not had a CD-57 yet, but my Sister's very thorough LLMD, who he sees next month, will definitely do one on him, among alot of other extensive testing. So until she gets all his results back, and can confirm LD either way, LD is still in the picture.
docdave-My Hubby's EBV titer was off the charts high even before he started any ABX treatment. That's why he is on Valtrex right now along with Mino and Doxy. He is watching his diet fairly well, but not 100%. He's cut out most sweets and breads.
Thanks for the concern about the spinal tap-he does need one done to rule out some of the other diseases he may have, not necessarily LD. He's seeing a good infectious disease Doctor that his LLMD said was very good, that uses a less invasive and less painful way of doing spinal taps, with a very thin needle.
So, we just have to wait and see here for now.
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
| IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
alright...I don't see had it could get any less painfull than it was for me....
It was the worst pain I felt in my life!!
Well good luck to you guys and keep us updated!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
posted
I was on rocephin for 3 months with only a little progress. I started to see and LLMD at that time who doubled the dose to 2 grams a day.
I herxed within a week and was feeling fantastic after 3 months. Trouble is I stopped and I suspect it came back because I didn't use a cyst buster with it.
Posts: 87 | From Yorktown VA USA | Registered: Jul 2005
| IP: Logged |
posted
YorktownNL-That's the dose my hubby was on for 3 months-2 grams a day, 5 days a week by IV. Then he started the same dose 7 days a week about a month in. Along with this, he was taking Azithromycin for the cyst busting for about a month, again with no herxing or improvement.
He has been on orals only now for the last week, Mino and Doxy, and again, nothing at all.
He feels there is a better than good possibility that he has Hashimoto's, which has a lot of the same symptoms as LD. He has been doing his own research, and is pretty confident that this is what he has.
He is currently on Synthroid, but thinks he needs to get on Armour instead at a higher dose to start to feel better. Hashimoto's can also cause brain swelling like he has. He will see his Endocrinologist soon, so hopefully she will get to the bottom of this.
Still not ruling out LD yet, be we should have a definite diagnosis by the end of April.
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i second the NO SPINAL-it doesn't tell you anything anyway-can only be used against you-and the pain is the worst
also co-infecs a poss-tests not good
i have wondered about the no herxing thing because altho i do herx a lot...every time i am in for surgery and have iv abx i do not herx and always feel really good for a few weeks after...just have wondered about that
also-correct dosages are complicated and impt-i only had one llmd go crazy about testing my levels of abx and he is the one that got me the most better
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
just had an idea about the not herxing...maybe when you have really smart Bb's in there-they go right to cyst as soon as they know the abx is there...therefore NO killing...no toxins
when we have dumb Bb they have to be killed off some before they get the message to go to cyst...so those ppl herx...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Right! The trick is to get them to come out of the bad forms and hit them before they can multiply.
-------------------- 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
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic