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Posted 8/26/2015 4:55 PM (GMT 0)
I'm searching topics related to those with Rocky Mountain Spotted Fever and can't find any. Is that talked about anywhere on these forums?

Thank you.
Posted 8/26/2015 5:15 PM (GMT 0)
Hi Julymorning!
Welcome to our community!! I'm afraid that RMSF is one infection that's not talked about a whole lot, and chronic RMSF is talked about even less.

I did a forum search for you though: goo.gl/VWbZV4

Please do let us know how we can be of more help to you!!
Posted 8/26/2015 5:57 PM (GMT 0)
Thank you Traveler! I thought I had Lyme for years Even tested a couple positive antigens about 23 years ago, but was told there was no Lyme in Missouri (at that time) and was sarcastically asked by the md interpreting the test if I was saying I was the first one. (He was wrong, others with positive diagnosis showed up about the same time)

Anyway, I kept bringing it up, because I have never been convinced my Fibro diagnosis was correct. My current Internist sent me to the lab for a full Tick borne disease panel and I was called with a positive, asked to test again in 10-14 days and the second one came up positive as well.

I am searching for others that are surviving it so far, for support and compare notes.
Posted 8/26/2015 6:07 PM (GMT 0)
Well, you've found a great place to come to find that support and to compare notes!!! I've survived a 40 yr old infection, plus a reinfection just last year! And I live in Northern Arkansas! So we're neighbors!!

I've been diagnosed with Fibro by several docs, with 18 out of 18 trigger points being positive - but it was Lyme, because as I told the doctors when they were testing those trigger points, why stop there? That's not even half of the places that I hurt like that!!

Let us know what you would like to find or talk about and we will be happy to help you out!! :-)
Posted 8/26/2015 7:33 PM (GMT 0)
Thank you so much! I think today I'm trying to sort out if my symptoms are still RMSF or what.

The Doxy was a nightmare of nausea, thankfully I did get some hints just reading here and I candied some Ginger.

Something, I'm guessing the Doxy, spurred a bout of edema everywhere in me. The day after I saw my Internist last week I started on Lasix and Potassium on top of my Lisinipril and HCTZ, but already the night after my last Doxy I was starting to pee like it would never stop. I've lost 10 lbs of water so far and look back to normal, but I had to have a chem stress test Monday and will hear how that went tomorrow.

I am allergic to the Ceftin group so if I move on it will be Zithromax. Same protocol for Lyme.

I had to laugh when I saw the laundry list of side affects, which I don't normally look at in advance, but someone expressed hope that the next round would go easier on me.

So, that's exactly why I'm trying to determine if the Doxy was enough, which I highly doubt after all this time.....but I hate to put my body into so much torture if it's not required.

Do you or does anyone know if you're supposed to get re-tested after treatment? I was so miserable for the month on Doxy, I can't really remember if I am any better now that I was before I started the treatment. Going by yesterday and the way I felt, I have to say absolutely not better. But I have had a few good short stretches of time since stopping the Doxy.
Posted 8/26/2015 9:42 PM (GMT 0)
We don't have a good test for letting us know if the infections are still there or not, as far as I know. There is one that we are all watching (anxiously) to see if it really is all it claims. If it works, then we will have just such a test.

For treating Lyme, Doxy is never enough, unless the the infection is in the first couple of months. Doxy pushes the bacteria into it's cystic form, and then it just lays dormant until the coast is clear, then comes back out.

And do be sure that you are detoxing too - that will help you control the severity of the herxing.

And you may want to consider either a LLMD, a LLND or adding in an herbal protocol that will help you fight these infections.

Let us know how we can be of help!!
Posted 8/28/2015 11:53 PM (GMT 0)
There is the LLMD that is 2 hours from me. At my wit's end I went ahead and asked my Internist if he would make a referral for me, since he brought out the other's protocol sheet before prescribing the Doxy. I'm waiting to hear....but from what I just read that could take a few months.

I live in one of the most rural areas of the State. Probably St. Louis would be closer than Columbia. I'm dreading the drive.
Posted 8/29/2015 12:02 AM (GMT 0)
So you're in Missouri? If you would email me, I'll be happy to share the LLMD's that I have listed in your area. Just remind me of where you wish to find a LLMD - or you can include a larger city near you where I could base a Google maps search from.

By the way, I'm your southern neighbor and my hubby worked up in your area a lot!! Beautiful area!
Posted 9/5/2015 6:14 PM (GMT 0)
Somewhere else in the forum I posted that the LLMD I was referred to called to say they don't take any kind of insurance and that the first visit, an 1 1/2 hr consult would cost me $500 cash.

My Internist is finding me an infectious disease specialist up in St. Louis. So at this time, since testing positive last May, I've had 4 weeks of Doxy which ended 2 weeks ago and that's all.

My body has never felt so odd and ill. For the first time in my life and all the health problems I've come through I'm having feelings I am not going to survive this.
Posted 9/5/2015 6:35 PM (GMT 0)
That's not really a bad price for a LLMD - I see a non-LLMD for my thyroid and adrenals and she's really expensive too as she doesn't accept insurance due to the some of the same reasons LLMD's don't - insurance companies dictate what we can take by cost only.

As a matter of fact - my insurance company is trying to force me to switch from Armour thyroid (a natural thyroid med) to Synthroid - a pharmaceutical that I already have discovered that I don't do well on!!

An ID doc isn't the way to go, I can assure you - unless they are ILADS trained. ID doc's believe Lyme is hard to catch, easy to treat and that there is no such thing as chronic Lyme disease. They think that chronic Lyme is just "left over symptoms" that will go away with time, or you just have to learn to live with them!! Can you imagine if they treated people with pneumonia like that? After one 2 week round of abx, you are just sent home with pneumonia? So then why is it okay to do that with Lyme patients?

You should look into these links before making or going to that appt:
ILADS vs IDSA:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/


archinte.jamanetwork.com/article.aspx?articleid=226373


www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/


I know how hard this is, really I do. I fought hard with these infections and treatments for years. That's why I'm trying to get you to see an ILADS trained doctor, as an ID doc is literally a waste of time and money that could be much better spent with a doctor that actually has been given the tools to help you, and with the appropriate doses and length of time in treatments.
Posted 9/8/2015 6:56 PM (GMT 0)
:'( I don't know what I'm going to do then. Sell my property and live in a broken down car so I can pay for the right kind of doctor?

I'm sunk.

Not a good day to read this. My head hurts like hell my vision's messed up and I just generally feel more crappier than usual.

Apparently even though I tested positive twice, have had long running fevers, headaches, etc., etc., for a pretty long time this Internist wants someone else to be responsible for conclusively saying I have rmsf or else it's as he said a couple of times, that I have so much going on health wise he's afraid to continue the treatment protocol.
Posted 9/8/2015 7:11 PM (GMT 0)
Have you emailed me yet? I would be happy to share the LLMD's that I have listed for your area with you. You can ask about payment options or you can try the different things listed on page 2 of the "New to Lyme?" thread for saving money while in treatment, including things like Care Credit.

Or you can use one of the herbal protocols that many here use.

Non-LLMD's are afraid to touch us just as your internist said!
Posted 9/9/2015 6:23 AM (GMT 0)
Thank you Traveler. I appreciate the effort you've made in my direction.

There is no point. If my Medicaid with the small co-pays can't be utilized...and otc herbals cost money too, I can't cover it.

Maybe at least the Infectious Disease people can rule out everything else, and if they can, I know I can convince my own Dr. from continuing on the protocol sheet at that point.
Posted 9/9/2015 4:03 PM (GMT 0)
Best of luck with that!! And know that we are here and willing to help!!

Just so you know though - if you could find a way to get about $300 you could do the same Lyme protocol that I did and that will cover you for about 8 months.

If you choose to use Buhner's protocol, you could start just with one tincture/pill and build your protocol up from there.

And for a 3rd option, you can use Jernigan's protocol for about $50/month.

I promise I'm not pushing, I just wanted to be sure you understood what costs are likely going to be. Keep looking for ways to get these treatments started, and like I said, please let us know how we can help!!
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