Newbie here :)

[Oksana]

Hello, everybody! My name is Oksana, and I live in Ukraine. I was inspired to go AP by some of your awesome success stories. Long story short, I was recently diagnosed UCTD with strong SSc features (Ana 1:320 fine speckled, moderate Raynaud’s, SSC capillary pattern fingers swelling in the morning, joint pain and stiffness, heart palps, mitral valve prolapse, gastric problems, recent discoloration of the skin). In 2011 and ’12 had two tick bites followed by rashes and then high-grade fevers with terrible nausea and bone pains. Tests for Lyme are negative, but…but.
I’m scared and, being only 27, want to live very much. Need some encouragement from you.
Also, I’m planning to take LDN. Are there any patients who benefited from it?
Today I bought my 1st box of 100mg Doxy. Fortunately, Ukrainians are free to buy any antibiotics without prescriptions. Hope it works.
Every 3 months I’m going to write about my progress

[Maz]

Hi Oksana,

Welcome to the RBF discussion forum and sorry to hear about your tick bites and UCTD. If you had the EM (erythema migrans) rashes following your tick bites, then this is enough evidence to diagnose borreliosis, with or without positive tests. The rashes are definitive for the infection. It was 4 or 5 years ago, but did you happen to take any pictures of your rashes? Ticks can also be tested for infections and it’s often more accurate than human testing, which is mostly a form of indirect testing that involves looking for a person’s antibody response to various proteins of the Lyme bug. Unfortunately, there are several hundred strains of Lyme in the world and the standard tests don’t look for all and Lyme is also very immune-suppressive, so can suppress the body’s ability to produce enough antibody to show up on the test.

I’m afraid we don’t know of any Lyme Literate MDs in your neck of the woods, but if travel is an option, then I could take a look at what we have in Europe or the US, if you want to get a comprehensive Lyme and other tickborne diseases workup. Ticks can pass a number of coinfections, too, so you might feel you would like to check into this potential.

Doxycycline is a first line antibiotic in the treatment of Lyme disease, but doses for Lyme are very different from those used by Dr. Brown for the treatment of mycoplasma, so you might want to get as informed as you possibly can before any attempts at self-treatment. A good place to being in to read everything you can on the following site, including the treatment protocols pages:

http://www.ilads.org

It’s quite a complex set of infections and inappropriate treatment can push the infection into resistant forms, so it’s quite important to figure out what is going on, also in terms of coinfections, to ensure adequate treatment coverage. Once Lyme has morphed into autoimmunity, it usually requires long-term antibiotic therapies, often in various combinations and doses, as well as supportive measures to get subverted immunity back on track.

We’re not experts here…just fellow patients who can share personal experiences and resources, so hope you feel welcome and ready to settle in for the long haul as your get yourself back on the road to wellness!

I’m on my second attempt at LDN. I have thyroid issues which has complicated my progress on LDN and means I have to go very slow with it, but others here have had success and some not so much. It’s a very individual thing, it seems.

I will private message you a video that you might find of interest.

[richie]

Hi In addition to the doxy -the Raynauds -gastric problems and other problems have to be addressed as well —I use a calcium channel blocker for the Raynauds and a PPI for the gastric problems which I assume is reflux -I am sure your doctor can prescribe other meds for the heart issues –it is equally important to address all the symptoms in addition to the overall illness

[Sarah Kadoo]

Good day to every one here on Road Back Foundation.
My name is Sarah, I’m from Trinidad West Indies. I have been reading everyone success stories, about remission and being able to be normal again. Being you !!!
For the past 6 years I have been struggling with SLE/CTD AND RA I’m 31 years. My doctors tried, but it was bad, we did not pick it up until my kidneys started to malfunction. My sugar levels was going extremely low and tons of other problems just keep piling up.I had stomach problems a few years before I was diagnose. I started fainting, cold sweating,unbearable pain. Kidney pains, lower belly, lower back. Swelling never went down. Fever, passing blood in my urine, Bone pains, List goes on and on…..Its was just really hard and frustrating. My doctors had reach a point where they said ‘Sarah we are sorry but all we can do is make you comfortable’. And honestly not one day I was ever comfortable. I was in constant pain…It had even reach the point where I could no longer hold a cup, sit for longer than half of a hour, lying down, standing for a long period. I was on heavy steroids, pain killers, all other sorts of different concoction of pills. But my husband and I never give up. We kept on digging and compiling any and every little details on. What I can use, What may work, etc… And I always say I never regret stumbling upon Road Back Foundation. Reading other people stories, and knowing there was some sort of light on my situation. Because at that point everything felt it was falling apart… I do have to say, every step, or advice, getting doctors to help us. To make us better. Special props to Maz. I dont know how she do it but she is God sent. I have been on tetracycline 250MG since July month. I’m under supervision of my GP also he have me on other supplements etc. And this is why my story is so long, there is hope, there is a bright side. I can function,(before I had to get the help of my family, my husband and my son he is only 11 years) I can cook and do my duties….. that before use to be such a pain. I can sit and enjoy a movie. I can actually feel the difference. My pain is a lot more manageable. I can move on my own again. Its been about a month I’m on tetracycline…. I will be posting more, and giving updates. I have tons more to add.. but next time… on closing, thank you all here on Road Back Foundation. You all gave me my life back. Special memo for Oksana, dont give up, there is hope. Just work with your doctors and stay on it. I will be posting other updates soon. And also I will touch on other topics…

SLE , CTD & RA
Supplements: C and D, Evening Primrose, Flax Seed gel caps, Combo (Calcium, Magnesium, Zinc ) , Vitamins B's , Probiotics, Flotation , L- Arginine.

Soon to update and add other supplements to work along (assist) with the Tetracycline 250 mg.

[Spiffy]

I will be asking for LDN at my office visit. I am ready to try it. I will ask for 1.5 mgs. Maz, how is it affecting your sleep this time around? Pros? Cons?

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[Maz]

Hi Spiffy,

My sleep isn’t affected much with the LDN….the first time I tried it, I was getting night tremors, but it’s possible it was affecting thyroid function and revving up the “hot” nodules in much the same way as thyroid patients on medication may need to reduce their dose due to improved thyroid function. This time, I’m thyroid-less and taking replacement hormones. So currently unsure if the night palps are my T3 med wearing off or due to LDN. Can’t seem to win with LDN, but it could just be that my thyroid meds are off. My example is a bit unique, so please don’t let my story negatively influence you.

Hi Sarah…glad you made it onto the forum! 🙂

[Oksana]

Thank you very much for your inspiring comments. It’s already cozy enough here for me 🙂
I forgot to mention two things…
1. I do have subclinical hypothyroidism. 25 mg of euthyrox made me progress from TSH 5.2 to 1.6 only after 3 yrs. is it an issue for LDN? My dose is very small, should I take 12.5 mg while on LDN?
2. Travelling for me is not an option. I really don’t have enough money for this. but fortunately all meds in my country are sold without any prescriptions. So, now I’m my own dr. lol

Thank you very much! Sarah- you are going to be even better soon…I’m just sure!

[Linda L]

Oksana,
Can you buy any, I mean ANY medications without a prescription in your country?

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[Oksana]

Linda,
At least antibiotics – yes. LDN – haven’t tried to buy yet.
Antidepressants – no)) lucky am I, that I don’t need them. But if I needed…there would surely be zillions of ways to buy antidepressants without prescriptions, kind pharmacists being the first one)

[Nikkoal]

Linda, I know this is off topic, but looking at your signature line, are you taking any biologics or Meds for your RA?

[Linda L]

Not at the moment. I had a bad experience with Humira.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[Oksana]

Maz, I need some of your precious thoughts.
You see, all my Lyme bloodworks are negative. Including immunoblot. But my NK-killers are reduced very significantly. I checked my immune system just some weeks after the tick bite. It was in 2012, a galaxy far away, and certainly I have no cancer. There are NO Lyme Literate MDs in Ukraine. Really, not a single one. As well as no rheums familiar with AP. My only way out is to be my own doctor.
So, I’ve been on plaquenil 200 mg before sleep already for 3 months. After starting it I became feeling worse…Mb it’s Herx, I don’t know. Now I’m starting from 100 mg Doxy every other day, then I plan to increase it to a standard dose and then – add Zyth. Is it wise enough? God knows. What do you think?
I really have no other way out. Risk and either recover or die.

[Maz]

Oksana wrote:

Maz, I need some of your precious thoughts.
You see, all my Lyme bloodworks are negative. Including immunoblot. But my NK-killers are reduced very significantly. I checked my immune system just some weeks after the tick bite. It was in 2012, a galaxy far away, and certainly I have no cancer. There are NO Lyme Literate MDs in Ukraine. Really, not a single one. As well as no rheums familiar with AP. My only way out is to be my own doctor.
So, I’ve been on plaquenil 200 mg before sleep already for 3 months. After starting it I became feeling worse…Mb it’s Herx, I don’t know. Now I’m starting from 100 mg Doxy every other day, then I plan to increase it to a standard dose and then – add Zyth. Is it wise enough? God knows. What do you think?
I really have no other way out. Risk and either recover or die.

Hi Oksana,

Yes, you sure do have that right – god knows, eh?

Bearing in mind that we’re not medical professionals here, we can just offer things that may come to mind for you to consider and discuss with a doctor. Self-managing can be an extremely tricky and even a dangerous thing to do, especially without proper lab monitoring. So, if you have a doctor to help with this, I’d suggest you ask for regular blood monitoring. Labs can and do wobble with herxing, so it’s all a bit unnerving and would likely be very hard to deal with, without proper medical oversight. Do you have a local doctor who would be open to consulting with an experienced doc in the US?

Also, have you had a chance yet to read through Dr. Burrascano’s Lyme Treatment guidelines (http://www.ilads.org/lyme/treatment-guideline.php)? The doses and combinations for Lyme and other tickborne infections are quite a bit different from low dose AP, so although long abx pulses are used by Lyme docs, they don’t normally do the every-other-day intermittent pulsed dosing method. This is because low dosing can push Lyme spirochetes into biofilm and persistent forms. So, it’s all a bit tricky, Oksana.

My best fellow patient insight (as I wouldn’t like to lead you down the wrong path) is to contact the following orgs and ask if there is an experienced LLMD with whom you and/or your doc can do a tele-consult. I can provide you with some experienced LLMD names/contact info, but you’d need to call them up to ask otherwise. Better to go straight to the orgs who carry the full international LLMD listings and ask them.

http://ilads.org/ilads_media/physician-referral/

https://globallymealliance.org (Click “About Lyme” and scroll to “Find a Meducal Professional”)

Minocycline is the preferred antibiotic for scleroderma, really because it has better tissue penetration, but LLMDs prefer doxycycline, because it can be tolerated better in the higher doses needed for treating Lyme.

Plaquenil is normally given in two doses, as are the other antibiotics you are using. This is to keep serum levels up and to keep the pressure on the bugs.

E.g. when I started treatment for Lyme, I was taking 750mg tetracycline twice a day, 500mg clarithromycin twice a day and plaquenil twice a day. It was a heavy protocol and tetracycline is not equivalent in dose to doxy or mino (i.e. 250mg tetra = about 100mg mino or doxy).

I’m not sure about “staging” dosing either….i.e. adding one antibiotic at a time. When I began, my LLMD asked me to take all three, all at once, out of the gate.

But, here’s the thing…herxing when one has an inflammatory rheumatic disease is very challenging and it was Dr. Brown’s belief that too much herxing was counterproductive in the patients, because the tissue hypersensitivity caused by release of endotoxins by dying bugs can lead to a type of molecular mimickry that exacerbates things. In those instances, he’d actually stop treatment, do a washout and re-start treatment with a lower or same dose. So, there is a very fine balance that needs to be found between bug-killing and ensuring the patient doesn’t go into a hypersensitivity state (see Henry Scammell book). So, a choice needs to be made by the doctor with a patient about how to manage dosing on a case by case basis…you want to kill bugs, not the patient, so to speak.

I know this must be very confusing, Oksana. I have been at this for 10 years now…I did one very heavy years of combination Lyme treatments, became extremely hypersensitive, then switched to low, pulsed combination dosing and came very close to remission within about 10 months. I will never know if that first year was necessary or if I could have reached a remissive state on low, pulsed dosing anyway. The bottom line is that anyone with scleroderma should probably settle in for the long haul – for life – with treatment, to ensure the disease doesn’t return, and that dosing will probably need to be titrated to tolerance to ensure the die-off doesn’t become worse than the disease, itself.

Wish I could be more specific, but it really is a “feel as you go” kind of thing, even when working with an experienced LLMD. They are constantly changing the protocol to keep the bugs on the run, but also monitoring the patient to ensure that the treatment doesn’t cause worse problems than the disease.

So, my best insight is to contact the two orgs above and see if you can find a LLMD willing to provide you with teleconsulting services, so that you aren’t navigating things completely alone. My heart goes out to you, Oksana, and sending very best to you.

[Oksana]

Million thanks to you, Maz!
I’ve written them already and asked if they have such an option. But I guess they don’t, frankly speaking.
Also, I heard tele-consults cost 500 dollars and more. Such amount of money is too much for me and my family. Of course, I have no insurance and even if I had, it wouldn’t cover “unproved” treatments.
I’m simply desperate and only hope God changes his mind and takes the disease away from me.
I’ve heard Kim’s story who started treatment with Mino and then added other antibiotics and it helped with her Lyme and Scleroderma.
I know that Lynne achieved remission on standard AP and treated Lyme (which actually caused her SD) post-factum and it helped…These stories gave me hope and I decided to go this way…but nothing is simple in this world(((

[PhilC]

Spiffy wrote:

I will be asking for LDN at my office visit. I am ready to try it. I will ask for 1.5 mgs.

I don’t know if you are hypersensitive to drugs in general, but if you are it would probably be safer to start at 0.5 mg. People who are very hypersensitive should probably start at 0.1 mg. And yes, there are people taking such low doses of LDN.

So, if you find that a 1.5 mg dose of LDN doesn’t agree with you, don’t give up on it. Consider trying a lower dose.

Phil

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

[Author]

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