posted
Some of you have been following hubby's story.
The short version is that he had one of his shaking and stiffening up spells during his last LLMD appointment. His regular LLMD was at a conference. The P.A. was concerned, but was pretty lost as to what med changes to suggest.
This was a somewhat moderate spell and far less severe than the one at the ER the previous Friday where they did virtually nothing.
The 2nd LLMD who had never seen hubby before told us more in 5 minutes than the 20 plus neuros hubby has seen over the last 7 1/2 years.
The conclusion was that hubby was exhibiting dystonia and that he was not getting enough oxygen to the basal ganglia area of his brain. This was based on observation of his symptoms and prior patients the LLMD had seen.
I think the conclusion is correct based on hubby's response to the treatment. The LLMD started hubby on Benicar -- this is a blood pressure med which acts primarily as a vasodilator and also is supposed to act on inflammatory responses (decrease cytokines).
Hubby added 5 mg of Benicar 2 times daily. It worked really well for a couple of days. Not sure how long he will be able to continue though -- lowered his B.P. from usual 130 something over 80 something to 94/62.
He is really tired and having some dizzyness from the low blood pressure.
The Benicar seemed to have stopped his tremors for a couple of days, but he is having some milder episodes that we think are the result of decreasing his antibiotics.
The Cortef at 10 mg 3 times daily has pretty much stopped his headaches. But stopping the Rifampin and cutting the Zithromax in half seem to have allowed the Bart/BLO/mycoplasma to act up.
If things continue I will be calling the LLMD to ask for some med changes to work on the Bart or whatever. I don't think waiting a month will do much for the brain swelling/inflammation without treating the infection more aggressively.
Hubby used to take Gingko and Vinpocetine which are both cerebral vasdilators. I had tried to reduce the number of supplements due to finances and it looks like I picked the wrong ones to stop.
Hubby is still on hawthorne, but that is primarily a cardiac vasodilator.
Heparin and other things can thin the blood, but if the blood vessels are constricted it is still very hard for the blood to get thru. I think it was AliG who wrote about her dad having Parkinsons type symptoms while he was in v-fib. Without enough oxygen the brain can act up in unusual ways.
Of course the fact that hubby has a borderline low RBC doesn't help. He is waiting for results of bloodwork to see if the cold agglutin problem is still active or not.
I am still upset at the last neuro who said that SPECT scans weren't relevant as they were functional tests. He overlooked the obvious signs and symptoms that the LLMD saw. And that neuro saw hubby numerous times during his hospital stay.
I told the neuro and the LLMD both that sometimes an extra dose of heparin would stop hubby's tremors. Or that other times prickly ash or spilanthes and gotu kola tincture helped. Prickly ash and spilanthes both help keep platlets from sticking together and gotu kola is another mild cerebral vasodilator. Now at least I understand why these things help.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Thanks for this information; I have been watching your posts. I can FEEL this stuff in my brain and I too question vascular constriction. Since my symptoms started, I have experienced Raynaud's phenomenon in my fingers many times. It FEELS like my blood vessels are constricted. I also tremor, have lots of brain/nervous system issues. I have Lyme, ALL co's, along with several viruses.
My LLMD did some sort of blood test that indicated my blood vessel constriction. I am going to ask her about supplements that you mentioned as I am not on any of them. I am taking Boluoke...which might address this...anyone know? Thanks again, hope your hubby sees more improvement. TS
Posts: 566 | From West Coast | Registered: May 2008
| IP: Logged |
posted
Up. Any other input on this?
Posts: 566 | From West Coast | Registered: May 2008
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks for the post Bea.
So helpful that the LLMD was able to explain a bit about what is happening. Glad Steve is getting some help with the seizures.
The Marshall protocol uses benicar. I wouldn't even consider the protocol because of that. Anyone with low blood pressure could really crash with benicar.
I personally think it could be darn near fatal for some of us.
In the doctor's office yesterday, my systolic pressure was 98 while sitting, it falls when standing. Sometimes a lot. It has been as low as 60 for the systolic. Can you imagine how dangerous it would be if it fell to 30!!!
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
ByronSBell 2007
Unregistered
posted
Before I found out I had lyme, vasodialators help some of my symptoms
IP: Logged |
I know this med (Benicar)is not for everyone. But in hubby's case not getting enough oxygen to the brain could be just as serious or more serious than having low blood pressure.
As far as I know the herbal vosodilators do not cause a decrease in blood pressure because they work differently.
I don't like the fact that hubby is on Cortef (hydrocortisone) either, but sometimes you have to take symptom control meds to make things more liveable.
Just hoping we can hit on a new med combo that hubby can tolerate and that actually helps him finally turn the corner.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I frequently take vasodilators that you mention -- a combo of Huperzine A with Ginkgo (vitamin shoppe's combo), and also Vinpocetine.
Buhner recommends these for cognitive symptoms in his book Healing Lyme, and they really seem to help.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Yes, totally agree Bea. Under some circumstances, we must take things that are contraindicated.
Bea - I'm praying for your hubby to get the right combo of meds that allow him to turn the corner.
Vermont - I know that vinpocetine is a brain vasodialator but I'm pretty sure that huperzine a is not. It works due to it's affect on acetylcholine which is very much affected by borrelia toxins.
If you have some info that indicates otherwise for huperzine a, I'd really appreciate knowing.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Bea - re Benicar, FWIW my BP was normal to a bit below before taking it, and changed very little on Benicar. That was true even when I've briefly taken a higher dose (320 mg in a day) to get a bad herx under control. YMMV
Posts: 727 | From USA | Registered: Mar 2006
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
If Bb has a PKC INHIBITOR...TRPM4 is not being activated.
It is very important your husband's cardiologist knows this. VERY.
"MgATP, at concentrations that activate lipid kinases, promoted recovery of TRPM4 currents"
That channel also impacts insulin:
These currents exhibit the characteristics of TRPM4 and can be *suppressed* by expressing a dominant negative TRPM4 construct, resulting in significantly decreased insulin secretion in response to a glucose stimulus.
whereas MgATP, at concentrations that activate lipid kinases, promoted recovery of TRPM4 currents.
The channels, TRPM4 and TRPM5 are
***impermeable to calcium***. Remember, IF PKC was "available" it activates that impermeable to calcium channel (TRPM4).
There is another way to activate TRPM4...
880nM.
His cardiac cells are suffering with a calcium overload.
And Mg inactivates HMG Co A reductase.
It is not enough to make a lot of free radicals (ROS) to oxidize Fe...
Bb has a protein that locks onto holoferritin (iron loaded protein) and it uses Fe/SOD.
And our free radicals are trying hard to oxidize Bb's outer proteins, but Bb can rebuild them.
Know what that Salp 15 protein that Bb picks up on it's way out of the tick does?
Salp15 inhibits proliferation of CD4+ T cells by binding to extracellular domains of the CD4 molecule and *inhibits calcium signals* needed for activation of transcription factors NF-κB and NF-AT during T cell receptor mediated signaling in vivo as well as in vitro.
So initially we don't know that Bb is needs calcium.
Into "Google" type in:
borrelia burgdorferi calcium
(It is also using Na...which may mean TRPM5 is impacted with TRPM4 sorta "off"...TRPM5 might be "on".
I think this channel is also impacted: TRPM7/Chk1.
It is disastrous... if ChK1 is inhibited.
Know what the TRPM channels are?
TRPM is a family of transient receptor potential ion channels where the "M" stands for "melastatin".
Ahhh...see "statin"...now THAT makes sense! Bb follows the ``cholesterol pathway''.
Bottom line...he needs Ca OUT/not allowed in and Mg back IN.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
quote:Originally posted by TerryK:
Vermont - I know that vinpocetine is a brain vasodialator but I'm pretty sure that huperzine a is not. It works due to it's affect on acetylcholine which is very much affected by borrelia toxins.
If you have some info that indicates otherwise for huperzine a, I'd really appreciate knowing.
Terry
Hi Terry, I believe that you are right; I have no info that huperzine is a vasodialator.
I take it in combo with gingko, which I believe is a vasodialator; Vitamin Shoppe makes this combo and I love it, it works great.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Once again...PKC activates TRPM4.
Bb has a PKC INHIBITOR.
So....TRPM4 (a channel) is NOT being activated.
"Conclusions-- In vivo suppression of TRPM4 decreases cerebral artery myogenic constrictions and impairs autoregulation, thus implicating TRPM4 channels and myogenic constriction as major contributors to cerebral blood flow regulation in the living animal."
The body tries hard to increase Ca intracellular levels to activate TRPM4...via D3, PGE2...
Bb has a protein that binds to Ca.
And any Ca that does get in...
TRPM5 handles.
Gotta inhibit TRPM8.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
I think you are saying that Lyme does constrict the cerebral arteries.
I would agree with that.
For whatever reason if I give hubby IV magnesium it makes him feel much worse, not better.
Extra sodium sometimes helps and sometimes extra potassium.
I think hubby is on too many symptom control meds which are complicating things -- Lyrica (supposedly a calcium channel blocker for the brain -- doubling the dose landed hubby in the ER), Cortef (hydrocortisone) and now Benicar. Add that to the Ativan and IV Phenergan and we are in a big quandry as to what to do next.
Tried cutting the Benicar dose which is already very low in half -- caused increased headaches etc.
Hubby is having symptoms of POTS or NMH or adrenal fatigue since adding the Benicar.
And of course it is a weekend and LLMD appointment is 4 weeks away.
Hope we can figure something out in the next week or so.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
With Hypotension ,,and fainting problems resulting from dilated veins receiving the wrong signal from the brain, It would not be a good thing for people in this category to take vasodilators. Hypotension or unstable blood pressure is very common with lyme and about 70% of CFS people have this as well.
Search lymenet for (NMH)
Posts: 789 | From CT, | Registered: Jun 2006
| IP: Logged |
posted
Lymies with low BP and any eye problems should not take Benicar. Low BP means no or very little blood/oxygen is getting to the brain and eyes. That is why raising BP for some lymies with eye problems (irisitis, conjunctivitis, uveitis, narrow angle glaucoma which I have).
Also quercitine (sp?) is not good because it lowers BP too. It does help many lymies but I would question using it if anyone has low angle glaucoma.
Corinne
Posts: 461 | From Abbotsford, BC, Canada | Registered: Oct 2003
| IP: Logged |
posted
This seems to be one of those no win situations.
Hubby had normal blood pressure, but LLMD thought correctly that tremors. myoclonus and dystonia were being caused by lack of bloodflow to the brain because of blood vessels being constricted.
Very low dose of benicar (vasodilator) lowered blood pressure significantly and is causing symptoms of POTS or NMH. It is not bad enough to cause fainting, but hubby does mention that his vision sort of goes gray when he gets up and he has dizzyness and very weak muscles.
As I mentioned we tried decreasing the Benicar by half and that brought back bad headaches.
So for now he is staying in bed mostly and trying not to move around much until we figure out what to do next.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| 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!
Printer-friendly view of this topic