Heading to Ida Grove this weekend –

[lynnie_sydney]

Wow Jill that is absolutely wonderful. And what great confirmation that what you instinctively felt you needed to find the key to was there if you kept searching. It’s like what one of our former (and much missed) Volunteers used to say in her signature line “Whatever It Takes”. I wish you ever increasing wellbeing.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[cavalier]

Many thanks ladies. I shared this good change with Dr S. today by phone.

I had to see my eye doc today as the day wore on have a case of sudden Iritis that came on in my right eye is linked she felt to not the sjogrens she noticed my eyes were wetter hen they have been for the last few yrs’- this change in returning to moisture happened the 1st day of doing the IV’s, but she felt today this issue was due to the SD not sjogrens. She said it is pretty inflammed – giving me a topical steroid drops to get filled from the Pharmacy & I need to go back again on Friday for her to check this eye again cant see real well out of it & very sensitive & sore. Like Dr. S. said one step forward but it will find ways to still rear it’s head. I have no illusions that we still have more work to do.

Still working on suppliers for IV’s cost today quoted was double the cost of Ida Grove for IV’s plus 400 for the nurse for a tl. of $1,284.00 for 10 IV’s.
Am reaching out to my pcp for suggestions on Friday. If not will get it from Ida grove RX and try to find a nurse here. Worth fighting for though.
Best – Jill

[Krys]

@cavalier wrote:

……a case of sudden Iritis ….due to the SD not sjogrens. …. pretty inflammed –
– Jill

Jill, you can help your eye (don’t stop taking the drops!) by intensifying detoxification.
I’ve had iritis for 2,5 years now. The only time it is almost gone, or a few times all gone for a short while, was when I did intense detox while keeping non-starch diet.
I don’t know if diet helps you, but detox is sure to help! 🙂
Warm wishes, Krys

[cavalier]

krys – interesting — as when
in Ida Grove – we had a bit less to choose from food wise – was amazed at how much hamburgers there were to eat out & not alot of other choices – I ate chicken but there was no organics in the grocery store & so I could not eat as well as I liked. I had this coming on before i left & wondered if the plaquenil was adding to it – along with the headaches so i stopped the P. This stopping also helped my lower back get better so there was a plus to stopping the Plaquenil for me – I read that Iritis plaquenil at the least is not good for it – so am glad I did stop it. But yes when I got back from Iowa my skin had some blackheads & broken out something i had not had in a long time – so I felt I was more junked up. Will get into my infra red sauna blanket tonite & drink more water. But I did digress to a few starches on the trip – I am much better at home but I am from the midwest & I had to have a really good pizza – it is so easy to pass up here in the south as we dont have good pizza here but iowa does & i caved to have some, which I normally curb starches.

I also think i am starting to herx now from after the IV’s – dunno how long that will last but things that stopped aching hurt again – who knows if a herx or regressing I am not sure – hoping a herx.

got word today i have a marker for scarrdosis angio enyzme type marker is high – from my blood work – I almost dont want to know anymore but interesting when i looked it up said a bacteria infection can be one of the reasons along with immune.

Thanks Krys – i learn so much from everyone ! Best – Jill

[cavalier]

I also meant to say that i am sorry to learn you have had to deal with this iritis too Krys – it aint fun.
Jill

[cavalier]

Krys & et al – It might help if i could spell the latest S to come to my list growing list of S diseases – it is spelled correctly as – Sarcoidosis. This was checked for the 1st time in a ACE blood test and shown to be almost double the high end of normal for me. I felt how could I have both Systemic SD & Sjogrens & now this too – could I have just one or the other but I have found links showing both to be the case I sort of hoped it was one or the other but … typically in the cases reported SD was presnt for 5 to 9 yr’s 1st – this is about right for me – however some showed to be concurrent – considering this is the 1st time we have checked for this who knows. But the point being is in this link below it is blantant about it being a bacterial infection – other sites list bacteria infection as one of the reasons – but makes sense.
Other links stated the Iritis to be commonly one of the symptoms high cholestrol migraines so this along with the fatigue & aches & pains fit along with the fact that i have the marker.
One site listed 3 patients who have both another site had 5 patients with both found.

https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=190

Neither Rheumatologist here has ever checked for this and I will be following this up, but to me it only makes for more of a case to argue for IV treatment & Mino with a local doc. hoping my PCP will take it on.

Best – Jill who has more S’s than I knew.

[cavalier]

Rather than start a new subject line – I dont know if what I am feeling is a bad Herx or progression of either systemic scleroderma or sarcoidosis & anyone who has some guesses or has felt like this is welcome to weigh in please –

My nerves since the last day of the IV on the ride home have felt like they are on fire – burning pain & also like they are fried – all mechanisms to control emotions or cope are just gone – I dont think it has as much to do with the IV’s as I felt great while on them but maybe more SO to do with the pot being stirred meaning things are being disputed bacteria wise & they are not going without a fight – one can feel worse due to that OR because this is how patients feel with either SD or Sarcoidosis – I dont know which one to blame it on even – as I cant find really anything relating to this feeling in way of symptoms.
The nerves in my eyes are also affected & I cant get them under control am seeing a eye doc every other day have been for the last 10 days Bad case of Iritis/Uvetis the roid drops are just not doing anything & they have risk to continued use of them.

Thanks for any help in advance!
Jill

[Maz]

@cavalier wrote:

Rather than start a new subject line – I dont know if what I am feeling is a bad Herx or progression of either systemic scleroderma or sarcoidosis & anyone who has some guesses or has felt like this is welcome to weigh in please –

My nerves since the last day of the IV on the ride home have felt like they are on fire – burning pain & also like they are fried – all mechanisms to control emotions or cope are just gone – I dont think it has as much to do with the IV’s as I felt great while on them but maybe more SO to do with the pot being stirred meaning things are being disputed bacteria wise & they are not going without a fight – one can feel worse due to that OR because this is how patients feel with either SD or Sarcoidosis – I dont know which one to blame it on even – as I cant find really anything relating to this feeling in way of symptoms.
The nerves in my eyes are also affected & I cant get them under control am seeing a eye doc every other day have been for the last 10 days Bad case of Iritis/Uvetis the roid drops are just not doing anything & they have risk to continued use of them.

Jill, so sorry to hear you are struggling so much at the moment. Have you contacted Dr. S. to ask for his insight on these symptoms?

All I have to share is my experience of the repeat rounds of IVs I have been doing for the past couple of months which have settled into a very distinct pattern. Within hours of doing IVs, I am completely a-symptomatic and feel wonderful, if only a little weary. However, as regular as clockwork, by days 4 to 8 post-IVs, I will begin herxing. Initially, the herxing was quite tough, but with each round this has eased and this week (touch wood), I am now on Day 4 and felt very well when I got up…just some minor aches.

With my Lyme, I have always had a bit of peripheral neuropathy (burning feet and occasionally my palms). With herxing, this has worsened significantly, but when I work on detoxing, it clears it quite quickly.

USed for skin, soft tissue and joint infections, clindamycin has some other special properties, one being that it inhibits bacterial antigens (toxins), so while on it, you feel marvellous. It’s why it is used in suspected toxic shock syndrome cases. However, it’s not uncommon for folk to comment here that when they have been to Ida Grove, they feel so much better, but are worried when they get home and begin herxing in a big way. The IV clindamcyin definitely stirs things up and it will be different for everyone. AF recently commented how she got home and wound up with a heavy pneumonia that required different antibiotics for a while (Brown mentions this in the video at the top of the forum).

http://en.wikipedia.org/wiki/Clindamycin

“Clindamycin is used in cases of suspected toxic shock syndrome,[17] often in combination with a bactericidal agent such as vancomycin. The rationale for this approach is a presumed synergy between vancomycin, which causes the death of the bacteria by breakdown of the cell membrane, and clindamycin, which is a powerful inhibitor of toxin synthesis. Both in vitro and in vivo studies have shown that clindamycin reduces the production of exotoxins by staphylococci;[18] it may also induce changes in the surface structure of bacteria that make them more sensitive to immune system attack (opsonization and phagocytosis).”

So, while clindamycin inhibits bacterial toxin production (to which Brown said rheumatic tissues became hypersensitized), it also makes the bacteria more vulnerable to immune system attack. So, when that nice palliative action (blocking the antigen during IVs) wears out after the IVs, bugs that have been stirred up begin to recognized by the immune system and it goes after them. In the case of peripheral neuropathies, neuro-toxins seem to be a big contender. So, this is when necessary detoxing comes into play.

It can be almost impossible to discern the difference between a herx or a flare which is why you are probably feeling confused about what to “blame” it on, because both are caused by release of antigen and create the same effects. It’s just that the mechanism for the release of antigen is different. In a flare, it is the cyclical release of antigen as a part of disease process. With a herx, it is the release of antigen as the offending organisms die. In either case, reducing antigenic load is critical, because it is these toxins which promote inflammation wherever the bugs are hiding out. Antigens irritate local tissues, producing free-radical activity which promotes inflammation. Inflammation causes tissue damage. So, anything anti-oxidative is supportive of the therapy, including boosting glutathione, which helps to transport toxins out of the body more swiftly.

Jill, were you tested for Lyme disease and coinfections by any chance?

Hope something here will help as you work through this and that Dr. S. will have some good insight for you if you get a chance to report your post-IV symptoms to him.

[A Friend]

@cavalier wrote:

….. But yes when I got back from Iowa my skin had some blackheads & broken out something i had not had in a long time – so I felt I was more junked up. Will get into my infra red sauna blanket tonite & drink more water. ……I also think i am starting to herx now from after the IV’s – dunno how long that will last but things that stopped aching hurt again – who knows if a herx or regressing I am not sure – hoping a herx. …….. Best – Jill

EDIT: Jill, I had not read all the way through the long thread and realized you had developed more problems… especially when I read about the iritis/uveitis. I had a uveitis diagnosis much later after beginning IVs. Fortunately for me at that time, Dr. Emil Wirostko in NY was alive and the best there was for treating Uveitis, and he — like Dr. Brown — thought Minocin was excellent… and Dr. W liked Minocin as the best treatment for my uveitis. He died suddenly of an aneuryism. He also has a son and a daughter who at one time did research with him, and his daughter “inherited” my records while she was still a treating physician, after I asked if she would be my ophthalmologist if I had further problems and had to return to NY area. (Knock on wood! I’ve not had a recurrence.)

She has since left her practice and is doing eye research, as is her brother. It might (or might not) be helpful for you to know about Dr. Wirostko’s treatment for me. If you click on “General Discussion” and type in “Wirostko” in the little search window, a number of older posts show up with his name about treatment during that time. Many posts have been lost on the board, so don’t know the content of those left.

It also might be good if you mention Dr. Wirostko to Dr. S. He may still have contact with the two remaining Wirostko’s. I’m sure Dr. S attended some of the national meetings on Dr. Brown’s work, and in about 1997 (or about) Dr. Wirostko was one of the featured speakers at the conference in Los Angeles, and of course this was on eyes, I’m sure. So, am thinking that Dr. S will/should be able to encourage you as to where you might get the best treatment. I had problems with my local retinal specialist, and ophthalmologist, wanting me to take meds that when I saw Dr. Wirostko, he said they would undo everything we were trying to do. I had to change ophthalmologists locally, but got the cream of the crop (luckily) who was “glad to learn from someone like Dr. W.” Feel free to send me a PM if you have an immediate question, as we’re having to be out of town frequently right now. Good luck to you. Will keep you in my prayers.
AF

Hi Jill,

Haven’t been on the BB much for a while, but have been skimming over your posts regarding your trip to Ida Grove. I love that place, and Dr. S. I went there every 6 months for 2-1/2 years, with excellent results.

I just wanted to add here that when I got home from Ida Grove, after the first time I had IVs, it was winter and I began developing a deep cough (looking back, I now realize it was caused by die-off). My local doctor’s nurse told me flu was going around and I probably had flu. I got progressively worse, ended up in the ER in the wee hours on a Saturday, and x-rays showed I had pneumonia, and was told it was atypical pneumoniae (another name is “walking pneumoniae).

When I later did searches to read more about this type pneumonia, guess what another name for this is??? “Mycoplasma pneumonia.” Well, to continue, they put me on a different abx for the duration of the pneumonia. I called Dr. S in Ida Grove and told him about this. He said get off the Minocin, and follow the doctor’s orders and take the abx he prescribed — and as soon as I was over the pneumonia, to get right back on the Minocin, which I did. I thought it was amazing how well I felt as soon as I’d finished the pneumonia medication, and I was over it, and restarted the Minocin. I remember distinctly that I felt better than I had felt in a VERY long time, and believe the reason I did was because of everything the IVs and then the Minocin had done to zap the gremlims, detoxifying my body of a lot of them!!!

Stay the course… So glad you are feeling improvement. Good luck!!!
AF

[cavalier]

i have been coughing didn ‘t know if it was due to my lungs with Sarcoidosis or Herxing but this gives me something to go on – I did write last nite to Dr S. have not as of yet but early heard anything back yet.

I read all 3 pages of this Wirostko posts – all of the links have been removed but I get that the bacteria can be in the eyes itself.
I found his dau. & articles but the meat of the articles you have to pay for – but saw that bacteria can be involved with these diseases.

Have been tested for lyme twice but it was years after the tick bite & the lack of being positive does not mean alot one could be either way & I was tested for Bab. as well.

I am still on Minocycline 2 x’s daily 100 mg’s EVERY day other than the 5 days of IV’s – i am due to get the IV again this Thurs of next week am seeing my PCP on Monday to be sure that is set up & has not fallen thru the cracks.

Just having a hard time with the eyes they are not getting better – hurts to be on this screen for long so … hoping the IV next Thurs will bring some relief it did the 1st time – so no reason to think it wont. I have to be concerned with my lungs of Pnemonia would not be good for someone who has only 70% of their right lung & 30 of the left & sarcoidosis & scarring – but the vax is not good for me the preservative forget the name now causes sclerodosis – even my rhuemie when I told her months ago what was in it said that would not be good. have a great weekend everyone – eye doc is not giving me anything by mouth – so that is good but the roid drops are not good long term either & are not doing alot so I have little faith in treating by this method for me. I never miss my mino daily – for sure. Jill

[A Friend]

@cavalier wrote:

i have been coughing didn ‘t know if it was due to my lungs with Sarcoidosis or Herxing but this gives me something to go on – I did write last nite to Dr S. have not as of yet but early heard anything back yet.

I read all 3 pages of this Wirostko posts – all of the links have been removed but I get that the bacteria can be in the eyes itself. I found his dau. & articles but the meat of the articles you have to pay for – but saw that bacteria can be involved with these diseases.
Jill

Jill, am not understanding your reference above about your reading “all 3 pages of tghis Wirostko posts….” I’ve never seen a place where you’d have to pay for his or his daughters articles. Were you looking on the Internet?

When I did the search using the name “Wirostko”, I was here on our RBF BB site. I had clicked at the top of this screen on the words “General Discussion” and it took me to the main General Discussion heading, with the little blank window under it, into which I typed “Wirostko.” Is this what you did? If so, quite a number of posts showed up with his name in them. To read each post, you can click on the blue words to the right in each post that say “jump to post,” and each complete post should open. When you arfe through with that post, just click your back arrow at the top-left of the screen. (Reading these older posts were suggested just for examples of some of the things I did when Dr. Wirostko was my uveitis treating physician.) Let me know if I’m still failing to explain finding the posts… ok? [By the way, he treated many children with JRA effectively, also.]

AF

[Maz]

AF, your mention of Dr. Wirostko reminded me of an article on the main site about JRA and uveitis, but sarcoidoisis is also mentioned.

http://roadback.org/index.cfm/fuseaction/education.display/display_id/125.html

“There are many reasons to believe these MLOs (mycoplasma-like organisms) are also involved in human idiopathic systemic inflammatory disease such as JRA. We have found rifampin to be efficacious in both animal and human disease, eliciting a more rapid response than the tetracyclines and erythromycin which are slower acting but also efficacious.”

Jill, when talking with Dr. S. (as he’s familiar with Dr. Wirostko’s work), I wonder if you could ask if it would be possible to trial rifampin to see if it may help your eye probs?

What is kind of interesting about this (though not while you’re suffering so much, I know) is that bartonella has been tied strongly to uveitis. The following article is quite an in-depth examination of this infection (which can be separate from Lyme or a coinfection of it) as it relates to uveitis. Not saying that Wirostko is wrong in his MLO findings, but there can be additional bacterial factors involved and, what is interesting about bartonella is that not only are tetracyclines used, but in chronic forms, rifampin is considered a first-line agent, too. So, it matters not if its bartonella or MLOs, as both would be treated similarly.

http://www.revophth.com/content/d/retinal_insider/c/27334/

Perhaps even more interesting in terms of your recent sarcoidosis dx, bartonella symptoms can be almost indistinguishable from sarcoidoisis!

http://www.lymeinfo.net/bartonella.html

“Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis.”

Further possible connections to bartonella is that Dr. Alan Cantwell, a dermatologist, ran biopsies on the skin of scleroderma patients and discovered rod-like, gram negative, acid-fast organisms that morphed into different shapes (pleomorphisms). Well, there are lots of rod-like, gram negative bacteria, but bartonella just happens to fit this description, too.

https://www.roadback.org/index.cfm?fuseaction=education.display&display_id=102

“Fig. 1: A clump of acid-fast, rod-shaped bacteria in the dermis portion of the skin of scleroderma. Fite-Faraco (acid-fast) stain, magnified 1000 times. The first report of “acid-fast” bacteria (similar to the kind of microbes that cause tuberculosis) in scleroderma was published by Virginia Wuerthele-Caspe Livingston, M.D. in 1947. These unusual microbes were discovered in skin scrapings from a woman with ulcerations of the fingers. In later collaboration with pathologists, dermatologists, and microbiologists, she further characterized the peculiar and multi-shaped (pleomorphic) bacteria she consistently isolated from scleroderma cases.”

This stuff can be a kind of connect-a-dot and correlation doesn’t always imply causation in scientific research, but it just seems odd to me that bartonella has been tied strongly to uveitis, sarcoidosis and scleroderma. Just wondering if this is worth further researching? What are your thoughts, Jill? You got tested for Lyme and babesiosis…but bartonellosis is a prevalent tickborne disease, too, and some researchers believe it may actually be a major infectious contender in inflammatory rheumatic diseases and, of note, this following article speaks to the neurological component of bartonella, too:

http://seattletimes.nwsource.com/html/health/2012002781_bacteria01.html

Rifampin used to come in an eye ointment…not sure if it is still around, but a compounding pharmacy may be able to make it up if not. Course, oral rifampin may be the better course for systemic causes of uveitis, but direct application to the eye may help alleviate symptoms faster, too? I don’t know…again, something to ask the doc?

[cavalier]

AF Hi the posts that I clicked on this website consisted of 3 pages under this Dr W’s name – when I jump to those posts the links & info have only lines there as if they were edited out assuming after they posted later so I cant find much other than you had a alot of posts in regard to this doc & Uvetisis. So I went to the net & typed in Dr W. & Iritiis & Uveitis & those articles I could only see titles but the articles were requesting payment – basicially I got from the titles that this doc & his dau. recognize the presence of mycoplasmas in the eye.

Am still seeing my eye doc saw her today she is only wanting to use the eye pred. drops which dont do alot she wants me to use them now every 2 hr’s instead of 3, will see my nurse practioner on Monday & ask her about this Maz.

Best – jill

[cavalier]

I have seen the article on the relationship of SD to TB they are like one variation from each other I have read this lady doc’s correlation- others say it is a mutation of cancer.
The halofugione from the evergreen blue hydrangea Chang Shan is showing promise in lowering the TH17 inflammatory cell for SD patients & other “autoimmune” diseases – i have a acpuncturist herbal trained guy who checked into the links i sent him he said it does look promising. One company is looking to patent this in Ga. so sources of this herb are drying up. Not a med. to play with as this can be lethal if taken in too high a dosage. but he bought some seeds will see if we cant grow & then he can harvest the root and dry he has the proper dispensing amounts to use.
I got some Metaplex today hoping it can help to detox & reduce the herx. regardless I know the AB is my main cornerstone just looking for adjunct supportive means to help thru this process & to reduce inflammation on all fronts – as my sight is blurred.
Jill

[cavalier]

Maz I printed out the 2 links for my doc. i found the flea association of interest – I have 9 dogs & we have had a couple of times over the past 7 yr’s of bad flea seasons here – so yes it is VERY possible ! Will see if my N.P. will draw blood for this Galaxy to run – if they can get into a vein that is.
Thanks!
Jill

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