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Post by MisterMike on Dec 22, 2017 13:25:44 GMT
Good morning!
So, I wanted to give an update of sorts to get some feedback.
So I had been on a pretty aggressive cocktail of abx (Mino, Plaquenil and alternating Augmentin and Flagyl every two weeks) along with Amphotecerin B as an antifungal. I started this protocol in late March/early April. Things went well for a while. I actually had quite a reduction in symptoms and actually had an almost total symptom free day! Also, my Q Fever titers had dropped dramatically and I also got rid of MARCoNS through a course of BEG spray. This continued until early July when my gut revolted and I developed diverticulitis and also had a huge flareup of temple/forehead/head pain. I reduced the abx dramatically for a couple of weeks, but as soon as my gut felt a little better I tried to start them up again. I found the Augmentin caused my gut issues to flare up the most so stopped that completely and added in Flagyl more regularly as it seemed to help my gut. I eventually stopped the Plaquenil again for a while due to eye concerns about taking it long term. I also did a short term (2 week) course of Cipro for my gut which really stirred up lots of neuro symptoms.
So fast forward to this Monday, my temporal blood vessels had started to hurt lots and looked very pronounced, especially my right one, which is relatively new to me as traditionally my left one is the one that bothered me. My right eye also felt "weird" like blood vessels in it were inflamed. My head pain had also come back full tilt boogie as did the belching, chest and arm pain I get occasionally and I had also developed a yellow tongue and lots of my other symptoms started to come back. My forehead (I assume my paranasal sinus) would also occasionally swell up. Good times!
I saw my local PCP and stopped all pharmaceuticals this Monday. Since doing so my right temple blood vessel is mostly less swollen (still flares up occasionally) than it was before and the pain/numbness is virtually gone. That being said, my left temple blood vessel area/head pain has increased in numbness/discomfort and my left eyelid is swollen. Those symptoms were more of “my normal” and appear to have returned since stopping the antibiotics and antifungal as of this past Monday. Pretty much everything else has currently calmed down too. I am also pleased to report that my tongue is no longer yellow, although it is more of a white now which seems in line with my long term issues with Candida.
I am currently still waiting for test results for tests to determine my current Q Fever titer levels and also to check for possible mycotoxin markers (MMP, MSH, VIP and TGF-Beta). Labcorp screwed up on these, so I may have to get re-drawn today. I'm also waiting on mycotoxin test results from Great Basin labs and hopefully will get these results soon.
My PCP has suggested a short term course of high dose Prednisone (60 mg for 5 days) as I asked her to consider if temporal arteritis could be the source of my temple issues. She feels it is unlikely for me to have this issue, but would like to try this course briefly to see if I get symptom relief as typically the treatment for temporal arteritis is Prednisone.
Curious as to any feedback all y'all may have.
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Post by Admin/ Traveler on Dec 22, 2017 17:25:05 GMT
First of all, congratulations on healing from MARCoNs and your lowered titers for Qfever!!! Hurray!!!!
For the most part, you know my thoughts, as we talk off forum. I would caution you to double check every med with an interaction checker, as prednisone has it's risks, and has other meds that are not good to be taken with it, as it can increase the side effects and risks associated with taking certain drugs (I don't know about herbal actions - something else you should discuss if you are still taking herbs). For example, taking prednisone with Cipro increases the risk of tendon rupture (just picking on two of the meds you mentioned is all!).
But - if you get the all clear to try the prednisone for such a short time, I would say give it a try. As I said, we talk off forum, so I know what kinds of issues you have been dealing with and know that this has been an issue for you for some time.
You're symptoms speak of Bartonella to me - any ideas from your docs? What do you feel is going on?
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Post by MisterMike on Dec 22, 2017 22:18:29 GMT
Thanks Trav!! Much appreciated as always. If I start the Prednisone that will be the only pharmaceutical I'm currently taking as I've stopped everything else. For herbs I am currently taking Japanese Knotweed, Garlic, Dong Quai, Nettle, Ashwagandha, Berberine Complex, Fish Oil, Zinc Picollate, DHEA Plus, Hawthorn, Milk Thistle and Red Sage.
I hear ya about Bart as I've suspected it for a very long time. My LLND wants to test me for Bart through Armin labs, but I apparently have to have it done in their office on a specific date, so that is pretty prohibitive for me. Aside from that I am making sure Q Fever is still negligible and finally getting tested for mycotoxins. If both of those are negative I'll double my efforts to get a legit Bart test. If that also comes out negative then I'll focus more on Candida and Enterococcus both of which I've tested positive for. My LLND also has a long list of things to test for when I can afford it such as Coxsackie, Varicella Zoster Virus, EBV, CP, Yersinia and Ehrlichia.
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Post by Admin/ Traveler on Dec 22, 2017 22:44:26 GMT
Well, you know me - I found some things! LOL! Seeing as you will only be on it for a 5 day trial, you likely have little to be concerned with, but I'd check them out just in case - some herbs can increase the strength of the prednisone, or slow the elimination of it. Here is this: Herbal medicines or minerals: People using prednisone should avoid garlic, ginger, ephedra, hawthorn, nettle and ginseng, as they have the potential to alter the levels of blood sugar. Herbs2000 - prednisone
“Archives of American Medicine” warns against taking ginseng and prednisone, noting that the effects of the two can have an additive effect -- meaning a double-strength effect that can be too powerful. Because corticosteroids rely on their immunosuppressant properties for healing, it’s counterproductive to drink a tea made from an immunostimulant herb, such as echinacea, notes the AAM journal. Other immunostimulant herbal teas that can make prednisone less effective include cat’s claw, astragalus and licorice root. Livestrong - prednisone/herbs I save the most fun one for last!! U of M health It tells you want nutrients to supplement with (if you stay on longer than 5 days), as well as herbs to be cautious with. Hopefully you won't have to test or be concerned about those other infections! But, in case you do, you've heard me yaking enough to know that Coxsackie can sometimes be treated with Lysine, just like the herpes viruses (including EBV) right? Just want to be sure you realize this.
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Post by MisterMike on Dec 22, 2017 23:47:37 GMT
That is AWESOME info Trav!! Thanks so much. Great to know about those herbs interacting with Prednisone and also what supplements might do. I'll definitely add some supplements!
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Post by girlie on Dec 23, 2017 7:14:01 GMT
Hey Mike....
Have you discussed the Prednisone with your LLND? - because of the immune suppression...it could cause a flare/increase in your infection(s)?
I'm sure you have thought about it already...and I'm thinking that finding out if it has an affect (or not) on your temple blood vessel will give you an answer that you really need.
I had looked at the Temporal Arteritis at one point....when I thought I might have Polymyalgia Rheumatica. (I have the pulsatile tinnitus..which could also be a symptom)
good luck, and please do update us!
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Post by MisterMike on Dec 23, 2017 17:12:48 GMT
Hey Girlie!
Thanks for the reply. I have discussed the Prednisone with my LLND previously, although not this time specifically yet. Previously he did prescribe a lower dose steroid, but ultimately I chose not to take that, but now based on recent symptoms and that I've currently stopped all abx, I'm inclined to try the Prednisone especially on such a short-term dose to glean a better understanding of my symptoms in general and to see how I react.
My PCP who prescribed it is skeptical I have temporal arteritis, but is supportive and has even talked about having me see another rheumy in an attempt to get a temporal biopsy to remove all doubt of a TA diagnosis. Last thing I want to do, but I do need some answers. If I took the head stuff out of the equation I would be virtually symptom-free.
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Post by girlie on Dec 23, 2017 18:55:57 GMT
So, you did have more symptoms previously? And now it's down to the 'head' symptoms? Well, that's PROGRESS! If you do get the biopsy - I've read it's not that bad. Crazy how much we read when we have lyme disease. I scoured the internet for 14 months...so, I'm quite familiar with many diseases/disorders...etc.
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Post by Admin/ Traveler on Dec 23, 2017 19:04:52 GMT
So, you did have more symptoms previously? And now it's down to the 'head' symptoms? Well, that's PROGRESS! If you do get the biopsy - I've read it's not that bad. Crazy how much we read when we have lyme disease. I scoured the internet for 14 months...so, I'm quite familiar with many diseases/disorders...etc. Boy, isn't that the truth!!!!
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Post by MisterMike on Dec 23, 2017 20:03:24 GMT
Well, most of my symptoms have long been in my head (at least some doctors have said that - ha!). Head pain, eye issues, jaw pain, temple issues, etc... I do feel now they are mostly either or both from the "temporal arteritis" issue and/or from the ophthalmic branch of my left trigeminal nerve being impacted. Million dollar question is of course what is causing those long-term issues! Outside of my head, I guess technically I'm not completely symptom free, but for all intensive purposes I feel I am as they are really quite minor and only very occasionally bother me such as peripheral neuropathy in the hands/feet, some right foot pain and a right arm nerve twitch every blue moon. Previously these were worse (much worse for some symptoms), so yeah I have definitely made some progress. Energy is great too, which wasn't always the case. Recently had a bout of diverticulitis but since stopping the abx I have no pain and have no gastric distress, so I don't see that as a symptom, but rather as a by product of heavy abx use. Oh, I do have an apparent adrenal issue (wake up at 3 often), but that has come and gone for eons and seems to be winding down a little post abx use too. Due to the symptoms overall lasting very briefly for the most part, definitely things feel "auto-immuny" to me which is another reason for me to consider TA. The biggest issue with the biopsy is no one wants to do it! Patience and persistence though. I'll get answers eventually. I'm hoping my impending test results that I mentioned in the previous post will really give me some answers. I may be at a crossroads. We will see.
I can't tell you how much I've learned since I started this journey! Who knew this would be my path. The whole "life is what happens when you're busy making other plans" is pure truth.
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Post by Admin/ Traveler on Dec 24, 2017 18:19:41 GMT
And with Christmas being tomorrow, I'll be good and not even comment on everything being in your head!!! I couldn't agree with you more when you say this: "I can't tell you how much I've learned since I started this journey! Who knew this would be my path. The whole "life is what happens when you're busy making other plans" is pure truth. " Please do be sure to let us know how it all goes!!!
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Post by MisterMike on Dec 25, 2017 2:52:49 GMT
Trav - you're too kind! Thanks for cutting me some slack! LOL Another update. Started the Prednisone this morning (60mg) and about 7 hours later my temple blood vessels were raging and they hurt bad. I also a bad headache and I had cramps in my arms and thighs. Needless to say I'm stopping the steroids tonight.
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Post by Admin/ Traveler on Dec 25, 2017 12:50:55 GMT
Oh wow!! I'm so sorry, Mr. Mike!!!
I remember before I knew what I was dealing with and was given steroids after a car accident where I had injured my back - boy, did I regret that choice!! I had a reaction similar to yours, although it's been long enough ago now that I don't really recall the exact symptoms I had.
I do hope that you are feeling better today and you can enjoy Christmas with your family and friends!!
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Post by MisterMike on Dec 25, 2017 15:19:25 GMT
Thanks Trav! I'm fine. Not my first rodeo with this ya know! The good part about this is now I have definitive proof positive that steroids negatively impact me instead of guessing like I did for so long. So I'll avoid them like the plague moving forward. Also, seeing my reaction, it is another validation that my underlying issue is likely from either a bacterial or fungal infection, both of which are known to not respond well to steroids and both of which I've long suspected. The bad part is if I indeed do have temporal arteritis (aka giant cell arteritis) that high dose steroid use is the treatment, so I'll have to find another way to treat it, which could be a challenge. Of course, treating the infection that is causing it will likely lead to a reduction in this symptom, so I'll keep trying to figure that out on a parallel track and hopefully I'll have more answers shortly from recent tests.
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Post by girlie on Dec 26, 2017 8:38:29 GMT
Trav - you're too kind! Thanks for cutting me some slack! LOL Another update. Started the Prednisone this morning (60mg) and about 7 hours later my temple blood vessels were raging and they hurt bad. I also a bad headache and I had cramps in my arms and thighs. Needless to say I'm stopping the steroids tonight. Goodness!! Hope the effects go away quickly! If you still think it may be giant cell arteritis - it might be that you need a lower dose of the steroid. I know that it sometimes goes hand -in- hand with Polymyalgia Rheumatica and the dose of Prednisone is 20-30 mg. Mike - have you done any research on Bartonella - possibly causing it? It's not something I've seen...but I haven't looked into it either. (I do have several issues of my own...just not that one. )
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Post by MisterMike on Dec 26, 2017 16:56:43 GMT
Thanks Girlie. From the research I've done it appears larger doses are recommended for treatment, but good to know about the dosage for Poly rheum.
It could certainly be from Bartonella and I remember from Buhner's Bart book him saying it can cause vasculitis. Also, apparently Q Fever and mycotoxin issues can cause it too, as can heavy antibiotic use, like I've just been on. So, it is a bit of a cr*p shoot cause wise for me right now.
I just got off the phone with a vascular surgeon's office as my PCP has referred me and we're trying to schedule something asap.
I've been throwing every anti-inflammatory I have in the house at it since I took the steroids and while the blood vessels are still relatively pronounced, the pain is mostly gone right now except for slight discomfort in the corner of my right eye and occasional twinges of pain in my left temple.
I've requested consultations with herbalists for alternative treatment of this if I can't take steroids.
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Post by Admin/ Traveler on Dec 26, 2017 17:17:57 GMT
Thanks Trav! I'm fine. Not my first rodeo with this ya know! The good part about this is now I have definitive proof positive that steroids negatively impact me instead of guessing like I did for so long. So I'll avoid them like the plague moving forward. Also, seeing my reaction, it is another validation that my underlying issue is likely from either a bacterial or fungal infection, both of which are known to not respond well to steroids and both of which I've long suspected. The bad part is if I indeed do have temporal arteritis (aka giant cell arteritis) that high dose steroid use is the treatment, so I'll have to find another way to treat it, which could be a challenge. Of course, treating the infection that is causing it will likely lead to a reduction in this symptom, so I'll keep trying to figure that out on a parallel track and hopefully I'll have more answers shortly from recent tests. I may have said this to you before - but that's why I won't take steroids ever - unless there is proof that it will save my life for some reason, and only for short term issues (I would never agree to take them for years). I've made both of my kids and my husband swear that they will honor this! LOL But, I'm more than a little paranoid that the doctors around me will do just that, should I ever go into the hospital. Seems the docs around here love handing out pain pills and steroids - either that or diagnosing a person with a mental condition (even though they have no right to do so, they aren't qualified to make such diagnoses!!) if the proper diagnosis isn't easy enough for them. I do hope that you can find something else that will help, Mr Mike! Although steroid use during the treatment for these infections generally is NOT a good idea, there are a small handful of conditions that would require it - but it would take a really good doctor to be able to balance it all out. I know you have one of those very good doctors though. Do let us know how things go with this! And, best of luck!!!
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Post by MisterMike on Dec 26, 2017 17:40:21 GMT
You have graciously warned me many times about steroids, but I guess I needed to find out for myself! (insert descriptive term for stubborn ass here!). As steroids are the preferred treatment for this condition I figured I'd try it. Lesson learned!
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Post by Admin/ Traveler on Dec 26, 2017 18:35:04 GMT
You have graciously warned me many times about steroids, but I guess I needed to find out for myself! (insert descriptive term for stubborn ass here!). As steroids are the preferred treatment for this condition I figured I'd try it. Lesson learned! Oh! I did not mean in any way that you shouldn't have tried it!!! It was a low dose, so it was definitely worth trying. I'm just really sorry that it didn't help!!
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Post by MisterMike on Dec 26, 2017 21:49:32 GMT
I think you should rename this forum to "Traveler Knows Best"!! You were absolutely right, as usual!!! Still glad I tried so now I know.
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