Just got back from an LLMD appointment. As many know hubby has positive bloodslides from both F lab and Clongen for an unidentified gram negative bacteria -- thought to be bartonella or BLO or mycoplasma. Anyway, he has been treating specifically for this bacteria for over 2 years now with multiple meds and herbs.
Hubby's LLMD is in practice with a 2nd LLMD. The other LLMD is one of the docs doing research with the new Galaxy Labs in Raleigh, NC which is not yet doing testing for the general public. They can do vet testing and some research but are waiting for final lab certification before doing additional human testing.
According to hubby's LLMD the lab is finding that bartonella is much more common than previously proven with other lab tests.
Hubby will actually be on the same meds he has been taking, but will stack all meds so that everything hits peak dose during the night (when bart is thought to multiply).
Hubby will take 50 mg of Mino at lunch. Then one hour before supper he will take 600 mg Rifampin plus the other 100 mg of Minocycline. At supper he will take 300 mg of Zithromax. Goal is to get to 900 mg of Rifampin and 600 mg of Zithromax.
Hubby will drop the Clindamycin, but continue with all the Buhner herbs including Stephania and Eleuthero tinctures and Spiro Kete (Kroeger herbs).
Very curious as to how hubby will react -- his red blood count and white blood count have actually been borderline low normal since doing Factive in October, 2009 (were both low for about 1 1/2 years prior to that med) except for during herxes when he increased the Rifampin to 900 mg.
His bilirubin has remained elevated though which still indicates something is killing off too many red blood cells.
One of hubby's primary symptoms remains waking up most nights 1 or 2 times with nausea, dry heaves, coughing, some light sweats and tremors, myoclonus and very mild dystonia. This happens pretty much like clockwork between 11 p.m. and 3 a.m. and has been going on for most of the entire 9 years he has been sick. But he used to have an additional 2 or 3 spells during the day as well.
His spells are much milder than they have ever been. Totally stopped for about a month about a year ago on extremely high doses of Cryptolepis tincture.
Hubby's 2nd and newer problem symptom is achey tendons and ligaments. This comes and goes but is much worse during the night. Often is the trigger for his nightly spells. The LLMD thinks that the bartonella are hiding in the muscles and tendons.
Hubby has severe osteoporosis -- a chiropractor broke one of his ribs last spring during a routine adjustment. Last October while on Levaquin he had a once a year injection of the osteoporosis drug Reclast. It seemed like the osteoporosis med made his tendons much more achey. Since then his blood calcium has been running low. I kept experimenting with different forms and doses of calcium and this last week his blood calcium was finally normal after 6 months of being low.
I am beginning to think that the injection of the osteoporosis med not only pulled calcium from his bloodstream but it may have disolved some of the calcium biofilms and released more bartonella organisms. Hopefully all of the calcium he is taking now is being directed to his bones and not used by the bacteria.
I am sure the next 2 weeks or so will be interesting. As I said these are all meds hubby has been taking -- was on Zithromax at either 300 or 600 mg 3 times per week for over a year -- but that will be daily now. But he has been on the Rifampin for 4 1/2 months and the mino at this dose for 8 months now. Any changes in symptoms will obviously be due to stacking the meds so all are at peak dose at the same time. With hubby I am sure there will be a reaction -- just not sure how bad it will be or how long it will last.
Hubby is nervous, but just wants to move on and see some real results. We used to think his doc was somewhat conservative, but he seems to be becoming much more agressive with meds than in the past.
Will post updates as things progress.
Bea Seibert
[ 06-08-2010, 04:51 PM: Message edited by: seibertneurolyme ]
Posted by f13girl (Member # 23844) on :
Any idea when this lab is projecting that they will be approved for human testing?
Posted by TerryK (Member # 8552) on :
Thanks for the update Bea. Good to hear that he is making some progress overall. I pray this treatment will yield some very good results. Interesting observation and theory about the osteo med.
I'm looking forward to more updates as treatment progresses. Keeping my fingers crossed for you guys!!
Terry
Posted by Marcie (Member # 10070) on :
Does your husband get a lot of night sweats from bart? I have been getting a lot of swaeats lately and am wondering if it is from bart. I know it is more typical with babs, but just wondeirng if it is common with bart too?
Hope your husband does well on his new protocol. Marcie
Posted by Jane2904 (Member # 15917) on :
Hope your husband does well on his new protocol.
Thanks for the update, you always have great information.
Our daughter has made many improvements on Rifampin, best of luck to your husband.
Jane
Posted by seibertneurolyme (Member # 6416) on :
f13girl -- Lab can't predict how long it will take for certification but is hoping to be open this summer.
TerryK -- Thanks for the well wishes. After the ostoporosis med hubby had aches in new tendons such as his right elbow that he had never had before. Can't say absolutely that it was not due to levaquin but he never had severe tendon problems on either that or factive. And even now walking and stretching improves his aches instead of making them worse. Sitting still or lying around just makes him much more sore.
Marcie -- Hubby's LLMD used to say that daytime sweats were bart and night time sweats were babs. I don't think he thinks it is quite that clear cut anymore. Hubby's sweats were much worse in the past when we thought he still had babs. Now it is mostly just his face and upper body that sweats.
Bea Seibert
Posted by txgirl09 (Member # 21612) on :
Thanks for the update. I'll pray his progress continues.
You are always sharing such great information.
Posted by ticked-offinNc (Member # 15420) on :
I hope so much Bea, that this is the magic bullet.You have been through so much,but you are still a fighter. I admire your strength and courage. Lets hope Galaxy comes through with the answers!
Posted by djf2005 (Member # 11449) on :
good luck bea, please keep us posted if the later in the day dosing has any different effect.
Posted by Munch (Member # 11323) on :
Thanks for the info on the protocol. I hope your husband kills some bugs on this.
I too have sore tendon and ligaments and have tried a million different things over the past 25 years (2 sets of splints, occupational and physical therapy, exercises, hand balls, acupuncture, acupressure, steroid injections, etc etc.)
The only thing that has helped so far is prolotherapy. I've had 3 treatments on my left hand and 2 on my right. http://www.getprolo.com/
I also have problems with severe osteoporosis. I refuse to take any of the bisphosphonates even after having 6 spine fractures. I think they build bad bone on top of bad bone. Some doctors argue that some bone is better than no bone.
There is a mineral called Strontium Ranelate that is sold in Europe. It's not available in the US yet but Strontium Citrate can be purchased at health food stores.
Have you looked into Forteo at all? It is a once a day injectable medication (parathyroid hormone) that I've been on for 18 months. This hormone stimulates bone growth.
After just 8 months on it, my bone density went up 20%. I get a new BMD test in May and hope to improve even more. I have had no side effects from this medication.
Has your husband had any hormone testing done? Low testosterone levels contribute to osteoporosis in men. I was also found to be low in growth hormone too. Do you know what his IGF-1 level is? Has he seen an endocrinologist?
Posted by kitty9309 (Member # 19945) on :
Bea-
"Hubby will actually be on the same meds he has been taking, but will stack all meds so that everything hits peak dose during the night (when bart is thought to multiply)."
This is what I do. I was supposed to be in the beginning, but forgot to follow the dosing instructions for the Zith/Rif. After I got that straight, I started to see improvements- related?? I don't know, but hope so!
Posted by hshbmom (Member # 9478) on :
Hi Bea, how is your husband responding to this protocol?
Posted by lyme in Putnam (Member # 11561) on :
You have been there with him through every step of treatment. Hope you see some improvement soon.
Posted by mjbucuk (Member # 843) on :
Bea, wondering if you might PM me who you are seeing with your husband. Trying to find a new place for my sons (all 18+)
I am sure it has already been posted elsewhere but Galaxy Diagnostics in NC has been accepting human samples for a few weeks now.
Posted by Haley (Member # 22008) on :
Bea,
Can you give us an update on your husband?
Posted by TerryK (Member # 8552) on :
^ for update.
Posted by Beachinit (Member # 21040) on :
Very interesting post as many of us have this routine awakening, feeling uncomfortable, sweating etc. Stacking the meds makes sense if replication indeed occurs mainly at night. I do not suppose science can prove BLO is nocturnal though. If this tactic works it definitely supports that hypothesis. Maybe I will try it myself. Thank you seibertneurolyme.
Posted by Maradona (Member # 24552) on :
To bad for lyme patients we don't have a lab to relay on it so we just hit what we think we have and can't concentrate all the meds on the proved bacteria with the lab.Your hasbends meds look good only think that I dont see there and I think is important is lumbrokinaze or natokinaze.
Posted by nefferdun (Member # 20157) on :
Hopefully your husband is doing so well, you do not need to visit us every day!
Posted by seibertneurolyme (Member # 6416) on :
Quick Update
Hubby could not tolerate the Zithromax at 600 mg daily -- tried for a month and became increasingly encephalopathic. Also liver enzymes became slightly elevated. At 4/27 appointment decreased the Zith to 300 mg and added back Factive at 300 mg (1/2 pill) daily.
Current combo has stabilized symptoms and improved bloodwork. Hubby says he wishes he felt as good as his bloodwork said he should. He is still having some increased dizzyness and head pressure, mild aches all over plus the ususal fatigue.
By stacking meds at night his nightly episodes of tremors and mild sweats have continued, but the time shifted by a couple of hours -- think this is due to the half life of the various meds.
For the first time in over a year his bilirubin has been normal (for 6 weeks now) -- was slightly elevated previously indicating that some pathogen was killing off blood cells too quickly. His RBC is normal and so are hematocrit and hemoglobin -- but they are still barely in normal range. WBC has also increased to 6.0 -- the highest it has been in a year or so also. Liver enzymes returned to normal.
The really surprising thing -- he had a repeat EKG -- all PVC's and PAC's were gone -- totally normal sinus rhythm. This change happened between 12/09 and now. Hubby could tell a difference when he was taking his blood pressure as soon as he restarted the Factive.
For whoever asked -- hubby does take Lumbrokinase -- recently increased back to 3 per day from 2 per day. Also takes 2 or 4 Vitalzym daily as well.
On the worrisome side -- hubby found 3 different ticks crawling on his socks in the last week. He had not seen a live deer tick for probably 20 years prior to this. He even saw a tick crawling on another customer in the drugstore while waiting on a prescription.
I have been off the computer a lot in the last week due to daily storms. And then the storm on Friday night that I slept thru totally wiped out our telephones. It will be at least a week before phone service is restored. I am typing this in the library.
Plan to ask LLMD to increase the factive to 600 mg daily at 6/15 appointment. Also plan to repeat Clongen bloodslide at that time. Just can't afford the $633 for the Galaxy Lab test right now.