Help

[laurawm]

Hi Everyone,

I went to a new rheumatologist today recommended to me locally as using ABX for RA treatment. Well, he does use doxy 100mg once a day primarily as an anti-inflammatory. He does not believe there is a long term infection connection. I left with this prescription, an Rx for celebrex and an Rx for methotrexate. Here’s how it went down:

I give my RA history and tell of the tick bite in May with indeterminate positive results and tell him how I am doing peptide shots. He says that science does not support long term Lyme and that any ongoing reactions I think are herxing are actually just reactions to minocycline in general and I should use doxy. He says minocycline does not penetrate tissue more deeply and there is no evidence that it is more effective in treating Lyme than doxy. He says peptides will not work well enough for me because of some long explanation that might be true considering they are not lasting long enough at this point. Since I had a peptide shot on Monday I told him that what he was seeing today was as good as it gets for me right now and he said that scares him because what he sees does not look good and “we need to shut this off” – meaning methotrexate. He said he does not think sulfasalazine is effective, even though I do believe it was helping me. I am so confused about what to do – but I have to do something as I am sustaining a great deal of joint damage and my mental health is not good. I feel so depressed and my hope is low at the moment. I will probably get all the scripts filled but do not know what I will actually take. I cannot do the peptides anymore if I go on MTX. He said there should be no problem doing doxy/mino and MTX – “I have 2000 patients on MTX and that is all they need – it was designed to be used for life and should not be looked at as chemo in such a low dose – it just calms the immune system – your current hair loss is just your RA and MTX will not make you lose more than you already losing.” 😥

Thanks all,
Laura

[cavalier]

Hi Laura – I think for some people mino works well & for others Doxy works better – for me doxy works better than mino but that is me – & yes I have some different issues than RA with SD & I have Lyme, with that said i believe in a suspected case of Lyme that doxy is always preferred & used. So i like the idea personally of this doc saying doxy for you, but am not a doc. for your being on doxy over Mino.
You may herx even more on Doxy at times at least I have over mino which just stopped working for me but Dr S. agreed for me to go off mino & my doc here Dr C. also felt to make a change.
I then got the yeast infection so i am trying to be careful even though i took 2 probiotic brands daily & I eat yogurt twice a day or kefir as that was pretty miserable it was from the ABX the yeast, I just needed a break. My stomach is still tore up as i have low cortisol that gets it upset still, so I am needing to get that righted before i can take the AP again and for all i know the yeast was one thing & my stomach was due to the low cortisol all along – either way I have to feel i am not tossing my cookies before I can take doxy I can take zithromax easier but doxy my stomach has to be good but this is me.
My #’s are still in the right direction but the cortisol being low – leads me to taking plant based cortisol for now – so I have to get some input here from a doc who can help me monitor this like a endo or something. All of this to say we are all different when it comes to our tolerances.

As to the methotrexate – the nurse at BCBS told me loads of RA patients get help from this. I have not used it – I was told with LDN one cant take a immune suppressor but i just got 2 Pharmacists who say that is not true that only opiods, & even then tramadol only can be taken 12 hr’s apart from LDN but not anything else. Phil on here says if i have him correctly the same immune suppressors can be used i have not done it yet. But it’s good to know it is a option. For me right now LDN along with melatonin have helped me turn the page & AP and other supp’s are making numbers budge downwards, when they were climbing before – for my markers. I may have to consider this at some point I am trying to keep a open mind some folks on here do take methotrexate & maybe they will weigh in. Some have indicated to me this helps put them over the hump in combo with AP in feeling better. I think what works is important for you & what others do that helps may or may not work for you – for me LDN is a help as is melatonin in immune modulation whether that is enuf remains to be seen – keeping a open mind and following with testing & your own feelings on how you feel are the best you can do.

Like you i could not hold onto peptides for improvements – i thought about having my blood tested for extra expense – but that is as you know months off I dont have months to wait not smart with SD especially not in my case as I have seen in just months more progression happen – getting word that my kind of SD does not show in the DNA for hereditary factors to me tells me this is more acquired – Dr C. in La. stresses detox & he does not know lyme. I need to cover my bases knowing what i do know & the diseases i know i have. For now feel if i can make progress in other avenues – I felt to let the peptides go. It could still happen in their doing my blood in finding something else but the more I have used my insurance to find any blood markers there is not so far anything to really show something glaring. I dont have the luxury to wait months for a maybe in the arena of peptides i am happy i gave it a shot – as if it did work the idea of a permanent fix is enticing but so far is elusive for me – if i was going to try a permanent chance at a approach again it would be to save my money for stem cells – using my own so nothing to do with a baby’s cord but that is with some risk & expense. NW has done alot of this with a track history with rheumatic diseases & others – they do use immune suppressors for this – I will decide on that when i go but i may just stay the course with a ongoing treatment – i working with my flawed immune as it is – seeing if it can overcome this with the right help – if so at some point a immune suppressor maybe needed who knows. The idea of my immune system being free of the antibodies is appealing but it is not without it’s price too. AP can help but often for some of us they combine as living the way we do til we get there some of us need help simply put – as it can be hell in the hallway til we do. Every medicine has it’s risk of some side affects methotrexate is not a new drug at least, but it is good to weigh things. I can say that the raynauds has held at bay & my circulation improved on the melatonin & LDN when I added them in – I could see & feel that & my skin has improved – this is what the peptides did for me too but could not hold onto the improvements – which with this daily I can – alot less money to use this so this is also why for me i am not going to keep pursuing the Peptides. I only mention this as you too have not held onto the benefits of the peptides for your disease – I wont ever know if it is b/c i have lyme too and you may also have lyme or if it just does not work for all people in lasting – either way i felt as much as I enjoyed the temporary help the cost for that short a period was not worth it – I needed something that could do more for me daily. I think this doc as much as I dont want to stick up for a rheumie always – grin – is telling you his opinion based on what he sees that you need more than this – i personally would put more faith in doxy it is a great anti inflammatory for your RA than what i have read of your benefits long term from the peptides you have gotten & I think it is possible that combined with something else & he is suggesting the metho that some people do use this long enuf to help them get over the hump & continue on with the doxy. All you can do is try and see for yourself.
Some of this is just that a trial to see what will help you the most. HBOT nor peptides were enuf for me to hold back the disease by itself – did HBOT help me detox sure – but i needed more than what either could give me.
Hugs – Jill

[laurawm]

Thanks Jill – still not sure what I am going to do. I will take the doxy, the mtx in the cabinet for now and the celebrex requires authorization from my insurance company. I appreciate the feedback – I have to do something about my pain, joint damage and depression. I am no good to anyone in the state I’ve been over the past month. As a side note, my new neighbor (really I am her new neighbor as we just moved here) said she thinks RA is from adrenal fatigue primarily caused by stress. I guess everyone has a theory. I certainly have had my share of stress even far before all of this.

Appreciate your thoughts,
Laura

[cavalier]

There’s tons of theories & many of them actually are true – but the deal is which one is TRUE for you !
It’s complex as often there is more than one thing off in these diseases. It takes methodically going thru & trying to rule in or out which maybe the players for you so frustrating at times! But i do feel adrenals are often implicated in Rheumatic/autoimmune like diseases as is the thyroid but it’s a chicken & egg thang which came 1st – sometimes hard to know – especially if you find this only after you have the disease already. I do know my own adrenals are stressed & they tested as low cortisol recently – if you read on that it keeps you open or more apt for infections as the immune cant function as well so you can see where then a Rheumatic disease could take place but it is a co player with other things or by itself & which happened 1st – I just know I need to address this if I want my immune to be more optimal & to get rid of any infections etc.
Make sense? I feel for you when you dont feel well it’s tough, I ache all over lately, but it is getting colder out – not too cold yet but last winter was rough it really hits me anymore, hard to separate some of this out sometimes.

Hugs – Jill

[lynnie_sydney]

Laura – one of the issues may be about seeing a rheumatologist at all. Most (not all) do not subscribe to AP or the way that this approach to treatment works (reasons for which are well set out in the Scammell book). With the rare exceptions, such as Dr F in Riverside, you will generally be seeing someone who believes that rheumatoid diseases are idiopathic and who will primarily be treating symptoms because that is the current rheumatology paradigm. Am just thinking that, if that is the case, you may be trying to put a square peg in a round hole in terms of administering and monitoring an Antibiotic Protocol. If you have decided that antibiotic therapy is the way you want to go, have you considered consulting an experienced AP Doc or LLMD?

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]

At least the Rheumie will use Doxy that’s better than many of them will, even if he only recognizes the anti inflammatory properties then at least it is provided & it will help get you there and is providing them, even if he does not buy into the rest of the reasons. Not saying this to be arguementative but rather it’s a avenue for now & as some doc’s are booked out etc – rather than be without.

May i ask why he felt the peptides wont work well enuf – as that has been the case for both of us – am curious even if it is a bit long if you dont mind.

Tx Laura – Jill

[PhilC]

Hi Laura,

Did this rheumatologist prescribe folic acid or tell you to take it? Many doctors who prescribe MTX also prescribe folic acid– it helps reduce the chance of side effects from the MTX.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[laurawm]

Hi Phil,

Thanks for your concern. I have heard I should take folic acid if I take mtx, but no, the doctor did not say this – I’ve heard they rarely mention it. I still have not taken the mtx – I want to talk with my integrative doc next week before making such a large move. The bottom line is regardless of what my pathogen load is and the abx, I must control my inflammation and immune response, as it is tearing me up physically and emotionally. I am 33 years old with two small children and it does not take x-rays to see the joint damage in my hands and feet; and my elbows, hips and shoulders also feel like they are being hit with ice picks and are popping. My fatigue is out of control. I have heart palpatations and pain in what I believe is my organs, lungs and tissues throughout my body. I get patches of dark rough skin from time to time and dry eyes. I try not to go on here about how bad I truly am doing as I do hope I can get better – but all of this is what I am facing – plus doctors and family who do not believe in bacterial allergies generally or lingering Lyme and tests that keep coming back indeterminate for Lyme. Perhaps I can combine some glutathione IVs and buy an infared sauna and make it through this, but time is not on my side at the moment as the flares/herxes are constant. This latest rheumy seems to think a small mtx dose will not hinder my immune system’s ability to fight off infection. Sulfasalazine is also a folic acid inhibitor but much less toxic than mtx and I would prefer to go back on this, but this doc doesn’t like it. Also have to change insurance policies since moving to a new state with personal insurance.

Thanks again,
Laura

[laurawm]

Hi Lynnie – I just saw your response. You are correct, I need a doctor I do not have. I am pursuing different doctors and have an appointment in January with one locally and am looking at traveling to D.C. or Raleigh otherwise, it’s just the immediate term that must be solved. I went to this rheumatologist because I needed a new abx script and also wanted to explore different anti-inflammatories (such as celebrex). It’s hard for me to walk away from these experiences (sometimes literally) not feeling like I am being incredibly stupid and knowing that indeed, at present my body is sustaining damage. I believe in the premise of AP, I just have to figure out a way to minimize the damage and fatigue going on in my body and moderate means of detox are not working well enough at this point. Just trying to figure it out – thank you for your thoughts.

Laura

[laurawm]

Hey Jill – my brain just doesn’t work like normal these days. When doctors go into long technical explanations my brain just shuts down. I think this is mostly due to my anxiety about the disease and partially due to a personal difficulty in learning orally (I do much better when I read, have a visual, or have hands on experience). Nevertheless, what I remember the doctor saying is that the peptide would not work or last long enough because it is causing adrenal fatigue – I repeated this back to him as I thought it was contradictory considering I know that when the shot is first administered, it seems to supercharge the adrenals to the point that I do not need as much sleep for a couple of days. My integrative doc who gives me the shots has mentioned that the initial sleeplessness is due to adrenal stimulation. It must be that as the peptide goes down in the system, the adrenals are depleted and exhausted over time? I hate to write an explanation that may be wrong, but this is what I took away from what he said. If I see this doctor again, I will ask again and try very hard not to turn my brain off (this is literally what happens, I stop listening as my anxiety rises).

And yes, I have been doing the doxy now for a couple of days and it does seem gentler on my system and perhaps this is just what I need right now. I am only 115-120 lbs and I think 100mg of mino is a high dose for me at this point.

Thanks Jill,
Laura

[dixiegirl]

I do want to encourage you that you’re the “sick” person! If you believe a treatment is good for you, you are the person who will benefit, not your doctor. You don’t have to make him happy. I hope you can find the right things to help you feel well!

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