LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter



Tax deductible

The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.
In the United States, your donations are tax deductible.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Hubby's New Blood Smear -- 12/6/10 (Very Long)

 - UBBFriend: Email this page to someone!    
Author Topic: Hubby's New Blood Smear -- 12/6/10 (Very Long)
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hubby got the results of his new Clongen blood smear.

Do I believe the test results yes and no I do think the bartonella or BLO or haemobartonella or mycoplasma or whatever the coccobacilli is is gone. But I do not believe the babesia or mystery blood borne protozoa is gone due to symptoms.

Brief history Hubby has been sick with tickborne illnesses for 10 years was undiagnosed for the first 2 years and then under treated for the next 4 years or so could not tolerate multiple meds. The last 3 years he has seen glimpses of improvement and the last 6 months improvement has been significant. Parkinsonian tremor and myoclonus and dystonia and pretty much all movement disorder symptoms went away as well as daily nighttime spells of dry heaves and tremors also are gone for the first time in 10 years.

Last Clongen blood smear was from 6/15/10. Details posted here.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/96617

When we stopped at the lab we asked Dr K a couple of questions

1) Have you seen any more patients with the dumbbell shaped parasite in the last 6 months answer was no.

2) Does anyone who has the unknown coccobacilli ever get a clean slide answer was no, but people should be able to live and function with small degree of bacteremia not sure if I agree

Here are the results of the 12/6/10 blood smear.

Wet Mount Examination Normal appearance no live organisms were observed

Stained Smear Normal appearance no blood parasites were observed

Here is a summary of hubbys treatment over the last 6 months

Prior to July1 was on all orals low dose Minocycline, very low dose Zithromax, high dose Rifampin and normal dose Factive.

LLMD stopped the Mino (hubby had been on that a couple of years) and was told to pulse in Tindamax had a bad reaction the last time he tried that 9 months prior. Even worse reaction this time ended up in the ER and the hospital for a week.

Resulted in a totally new med plan IV Rocephin added (had done that for 2 months 7 years ago). Has been on it 5 months now.

Stopped Rifampin had been on regular or high dose from mid October 2009 til July 2010.

Hubby waited 2 weeks and added back Tindamax starting at 62.5 mg and increasing from there gradually over the next couple of months. Have changed pulsing schedules a couple of times but has remained on this med.

Remained on Factive. Was at half dose daily for about 6 weeks and then at full dose daily for a month before he crashed in July. Have been at full dose pulsing 5 days per week for 5 months now.

Added in IV Zithromax mid September 3 months now.

Babesia treatment first since June 09 did 3 cycles of Coartem in August then took 6 weeks off and repeated 4 more cycles in September and October.

Since November hubby has felt like he was relapsing minor symptoms starting to come back some dizziness, worse headaches/head pressure, elevated bilirubin, increased nausea but no sweats. This was triggered by an episode of really bad dizziness following his daily IV Zithromax. We thought this might be related to the dumbbell parasite but LLMD would not prescribe Larium or Malarone as requested.

Hubby has been fighting a cold since his LLMD appointment 12/6. He also started LDN on 11/28 cant tell what is going on with that.

Hubby has an appointment with a new LLMD scheduled for 1/13/11. Current LLMD is not willing to continue IV Rocephin beyond 6 months and wont try any other IVs. LLMD neurologist still says he is moving to California and never followed up on appealing the SPECT request after messing up the original request.

And as usual I guessed wrong. Told hubby to go back on Rifampin for a couple of weeks to really make sure the bart was gone. I did check with the pharmacist who said there were no drug contraindications. After 3 days I know that was a very bad idea hope I can reverse the trend but not sure.

Actually the first night the Rifampin seemed to decrease hubbys headache. The 2nd night he had worse headaches plus insomnia. 3rd night (last night) he woke up shaking with dry heaves. After the IV phenegran he went back to sleep but continued to shake in his sleep off and on. Had a really bad seizure-like episode this morning trying to wake up I ended up using 1 mg of IV Ativan to get him out of it. But as hubby says once the neural pathways get triggered it is really hard to reverse the pattern.

Was the Rifampin just too toxic, or does he still have bart or did the med just aggravate his brain? Wish I knew.

Plan is to stop the Rifampin. Will probably stop the Factive at least a week before his new LLMD appointment to get some idea of whether bart is still an issue. I dont have any babs meds to try right now but might try an herb. Not sure.

Confused, concerned and frustrated pretty much describes the mood here.

Bea Seibert

I can be contacted at

Seibertneurolyme (at) yahoo.com

[ 12-20-2010, 12:17 PM: Message edited by: seibertneurolyme ]

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
up
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
jkmom
LymeNet Contributor
Member # 14004

Icon 1 posted      Profile for jkmom     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am sorry to hear this. I hope you can get this reversed.

It is so discouraging to see progress and then lose ground.

I hope the new LLMD will have some answers.

Posts: 984 | From US | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Wolfed Out
LymeNet Contributor
Member # 23727

Icon 1 posted      Profile for Wolfed Out     Send New Private Message       Edit/Delete Post   Reply With Quote 
Bea,

I feel for you guys. I wish him the best of luck going forward. I don't have much to add regarding your post, but wanted to comment on one of your statements I was unsure about.

"
2) Does anyone who has the unknown coccobacilli ever get a clean slide answer was no, but people should be able to live and function with small degree of bacteremia not sure if I agree
"

Are you referring to the test from Fry Labs? If so, my LLMD's office has personally showed me a smear of someone who had severe heamobartonella, and had a clean slide after 14 months of treatment with (I believe) Rifampin.

Posts: 829 | From MD | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Wolfed Out -- I was referring to the Clongen blood smear (similar test to the F lab) -- actually hubby has had multiple tests from both labs. He also had "numerous" coccobacilli from both labs before treatment. Now supposedly has a clean slide after treating for about 2 1/2 years with various combos of levaquin, rifampin, factive and numerous herbs.

Looks like I really messed things up for hubby -- was admitted to the hospital today. 2 mg of IV Ativan every 6 hours is the only thing that will even halfway control tremors, myoclonus, dystonia and seizure-like spells. And all those symptoms had been absent for 5 1/2 months since his last hospitalization.

The brain swelling head pressure is the real problem and I am doubtful I can talk his PCP or current LLMD into changing him to a different IV antibiotic. Not even sure there is anything different they can give him for symptom relief either.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
springshowers
Frequent Contributor (1K+ posts)
Member # 19863

Icon 1 posted      Profile for springshowers     Send New Private Message       Edit/Delete Post   Reply With Quote 
Curious if your hubby has been given IV Flagyl.

This did a huge amount of good for me regarding the Protozoan bug in the smear in my case anyway

In the long list of the infections we all have it seems for me that some are so much harder to treat than others and for me the protozoan ends up being last to stay standing and hardest to get to lower the load of.

If I had the opportunity I would do another few months of IV flagyl. In a heart beat. It was not easy getting a doctor to agree to putting that in my IV routine but it made A Huge difference and I know it is because of its ability to treat protozoans. There are not many IV meds we can choose from that will affect that protozoan in the blood ...

If he has not had a chance with the IV flagyl and you are getting a new LLMD maybe they would be willing to give it a try ..? of you have not yet.

Take good care

Posts: 2747 | From Unites States Of America | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067

Icon 1 posted      Profile for seekhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
Wow Bea, I'm so sorry to hear your husband has taken a turn for the worse. How sad. I was very happy to hear he made nice progress and was hoping it was a straight road to better health finally.

It seems very strange your current LLMD would not be willing to change things up given the severity of the situation, especially if he's hospitalized. [Frown]

It's upsetting to hear about the head pressure he suffers with. I know how bad it is. I can't fathom how anything could stand up to the onslaught of drugs he has taken in both IV/oral form. It's beyond reason. Unless some infections don't respond to normal Abx/anti-malarials/parasitics.

I wish him the best.
Is his LLMD giving you the ability to change-up meds for your hubby or does he/she keep a strict protocol?

Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Seek,

Sometimes we do make minor changes in meds without consulting our LLMD -- but obviously since we have the meds on hand it is something that has previously been prescribed and is left over from a prior change in protocol. I do always check with a pharmacist to make sure that he can take all the meds together every time we make changes.

Unfortunately current LLMD is somewhat conservative -- not even sure he ever prescribes multiple IV's. The neuro originally prescribed the zith and the LLMD prescribed the rocephin. But the PCP has been writing the scrips for both based on recommendations from the other 2 docs. It's complicated and convulted and totally frustrating to go thru hoops every month to get the scrips.

What I suspect will happen is that we will end up back on IV ativan around the clock as we had to do for 3 or 4 years in the past.

As for the headaches -- hubby never even had that on his symptom list for many years. He does have a high tolerance for pain thankfully. He doesn't use the term headache -- says he has head pressure or his brain is on fire -- so I have to remember to phrase the question correctly or he will say he doesn't have a headache even if he has head pressure. And as I am sure you know head pressure does not respond to normal painkillers such as aspirin or tylenol etc.

I mentioned diamox to the PCP but don't think he will be willing to try that. Maybe I can get him to try a migraine med -- that is about all I can think of to even try.

Springshowers,

Hubby is currently on tindamax -- only took a few slivers of flagyl once 3 or 4 years ago. I think he took 1/4 pill for a couple of weeks if I remember correctly.

Not sure what to expect from new LLMD but definitely think flagyl or a different malaria med is worth trying.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561

Icon 1 posted      Profile for lyme in Putnam     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm so sorry, I know from your posts how you are on top of your husbands condition and it must hurt to see him slip back. Hopefully the new doc will help to get him on the upswing.

--------------------
He took u to it, He'll you through

Posts: 2837 | From NE. | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
gatorade girl
LymeNet Contributor
Member # 24896

Icon 1 posted      Profile for gatorade girl   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Praying for you and your husband. I also pray that the new llmd will be more helpful.

--------------------
gatorade girl

"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain".

Posts: 633 | From baltimore | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
17hens
Frequent Contributor (1K+ posts)
Member # 23747

Icon 1 posted      Profile for 17hens     Send New Private Message       Edit/Delete Post   Reply With Quote 
Bea, I began taking Standard Process' RNA for brain fog over a week ago.

I've noticed much improvements and all that brain swelling pressure stuff is gone.

I've been very happy with the progress!

If you think it may help and want to try it but can't get it (thru nurse or doctor only), pm me and we'll find a way.

--------------------
"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

Posts: 3043 | From PA | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397

Icon 1 posted      Profile for sparkle7     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sorry to read about all of this suffering you & your husband are going through. I hope you can find some combination of things that will help.

You can take this with a grain of salt... did you ever think that maybe the side effects of the drugs were causing some of your husband's symptoms?

I know your case is very complex but after a while, it may be good to cut your losses & try to treat the sypmtoms rather than pushing for a "cure" with all of these drugs.

You have been trying so hard with the drugs for so long... Like i said, just disregard my thoughts if they don't ring true to you.

I hate to read about all of your suffering with this. Good luck!

Posts: 7772 | From Northeast, again... | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067

Icon 1 posted      Profile for seekhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sparkle7, it's hard to ignore that she said her husband made major improvements with a specific protocol. If that's the case and someone's been that ill for 10 years, how on Earth could they toss in the towel and not try to get that? He sounds like he's had/has SERIOUS issues, not minor pain or muscle aches. Being hospitalized 75+ days in a single year is nothing to play around with. I think he has no choice. [Frown]

What's his alternative? Could you live being in the hospital that much? [Frown]

I don't advocate playing with med combos w/o doctor approval though. I know Bea is smarter than 90% of the LLMDs probably, but that has some liability I couldn't accept with pharmaceuticals. If things go bad, couldn't the LLMD/LLND suffer consequences too. I know scripts were Rxed over the years, but still. Of course, I'm not the one suffering so we all do what we need to. I sympathize.

Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sparkle,

I really wish it was as simple as stopping meds. Hubby has been sick for 10 years. The first 2 1/2 years he was undiagnosed and had numerous ER visits and a few hospitalizations.

Then for the next 4 or so years he was only treated with monotherapy (one med for one infection at a time) -- did not improve except for short periods while on babesia meds.

But overall he continued to deteriorate neurologically. There were several breaks in there of at least 2 or 3 months (financial reasons and change in docs etc) where he had no antibiotics or even herbs -- only symptom treatment -- and the symptoms were the same or continued to progress.

The last three years is the longest period he has been on meds continuously and also the gradual buildup to multiple meds for multiple infections concurrently.

It took him 8 months to get to the therapeutic dose of 600 mg of rifampin for example. And he was only on 300 mg of zithromax 3 days per week.

Back in July when he crashed is when he started getting more aggressive and using more IV meds. The neurologist we consulted convinced us that the only way to stop the progression of neuro symptoms was to use more IV's which could cross the blood brain barrier.

The new lab test which shows a high titer for babesia WA1 explains a lot as far as hubby and I are concerned.

Based on history it has become obvious that the seizure-like spells are primarily due to babesia. I can't explain the exact mechanism. But being doped up with 8 mg of IV Ativan per day is not a livable option.

If these were true seizures then they would be over in a matter of minutes generally. But these bizarre episodes involve full body tremors, myoclonus, dry heaves, and dystonia. Basically what is happening is hubby shakes so hard his muscles freeze up and he can't move. He can't even speak. He does not lose consciousness but can become confused if the episodes are not resolved quickly enough -- they can and do last for hours without the IV Ativan.

And yes -- he had reduced his oral Ativan to 1/2 mg daily (over a period of 6 months or so) before his crash last July so it is not an addiction issue.

When I got to hubby's hospital room today he was in the middle of a spell and his feet were about 6 inches in the air. His muscles spasms are severe and painful. Muscle relaxants do not work either -- have tried a couple. His muscles are so tight that if I try to straighten his leg or arm for example I can easily lift half of his body off the bed and there are times when it might freeze in that new position.

Some symptoms you can live with a lot easier than others.

Despite all this hubby normally walks 1 1/2 miles daily. He actually feels much worse if he cannot do his normal daily exercise. I am pretty sure that is because exercise improves bloodflow to the brain.

So we will continue looking for that magic bullet which can treat his babesia.

17hens,

Thanks for the suggestion. Actually before he was diagnosed hubby saw a chiro who prescribed numerous Standard Process supplements and was convinced he could help him in 3 months -- after 6 months there were next to no real improvements although the chiro adjustments were beneficial.

Hubby has probably tried more different nutritional supplements than just about anyone. There are some he does seem to need on a regular basis and others which are useful for only short periods of time.

Whoever else I missed -- thanks for all the kind thoughts and well wishes.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Haley
Frequent Contributor (1K+ posts)
Member # 22008

Icon 1 posted      Profile for Haley     Send New Private Message       Edit/Delete Post   Reply With Quote 
I know that you can reverse the trend. We are all rooting for you and hubby.

I think Spring brings up a good idea. IV Flagyl is far different than oral Flagyl. It seems like that is the one thing he hasn't tried. My personal experience is that Tindamax is not as effective as Flagyl.

I did IV Flagyl for a month and I now am ramping up VERY slowly on Rifampin (oral for now). My doc will not allow me to do Rifampin for more than 3 months. He had 2 people that got liver damage from it.

I also am convinced that exercise increases the blood flow and the oxygen to the brain.

I will keep you in my thoughts.

Posts: 2232 | From USA | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
micul
LymeNet Contributor
Member # 6314

Icon 1 posted      Profile for micul     Send New Private Message       Edit/Delete Post   Reply With Quote 
You know, if the slide comes up positive, then you get confirmation, but a negative from only one stained slide does not mean that he's cleared of the organisms at all.

I think that a good analogy would be for someone to go to one beach, watching for sharks for an hour, and then concluding that there aren't any sharks in all the worlds oceans....pretty rediculous.

Now if they looked at 3 stained slides (I mean completely scanned each slide thoroughly),and then repeated the test weekly for a month, then the chances would be much better that he really was clear.

--------------------
You're only a failure when you stop trying.

Posts: 945 | From U.S | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
LymeMom Kellye
LymeNet Contributor
Member # 24807

Icon 1 posted      Profile for LymeMom Kellye   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi Bea, I just want to say that you are in my prayers, and so is your husband. I can't imagine what you're going throug!

I would like to comment on something you said earlier in this post "Looks like I really messed things up for hubby".

I just want to say that as caregivers we are always trying to find ways, or the exact thing to make our love ones well. Sometimes we get it right, and other times we don't. You do the best you can, always trying to do the right thing, out of love.

Please don't beat yourself up and just learn from what happened. Take care and prayers to both of you.

Posts: 333 | From Lyme Here Too | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397

Icon 1 posted      Profile for sparkle7     Send New Private Message       Edit/Delete Post   Reply With Quote 
seekhelp - I understand. It's just that if a protocol works for a while & then stops working - it may be best to try something different.

It seems that we don't really know what is causing improvement - it could be the drugs but it could be something different. After a while, it's hard to tell.

We have to keep trying. My feeling is there there may be other pathogens that are causing people to be ill that may not have been discovered. Sort of like after all of these years - they just discovered that a retrovirus called XMRV may be making people ill...

There are probably others. They may be fungal, viral, retroviral, bacterial, parasite, chemical sensitivities, EMF pollution... It's hard to know what it really is that may be making us ill.

In some cases, the drugs really help but for others, it's tricky. Long term use of abx or other drugs do have some negative consequences on top of having an illness.

In Bea's husband's case, he may have some unique genetics which make having this pathogen (which we don't know for sure what it is) much worse.

Bea's been doing a great job supporting her husband in so many ways. I hope you will all find the correct treatment for these awful problems that we are experiencing.

Posts: 7772 | From Northeast, again... | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

© 1993-2019 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to the Terms and Conditions.

Powered by UBB.classic™ 6.7.3


Home | Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Webmaster