Need some input

[darling787]

Hi All. Feeling discouraged today. My aches in my legs and mouth are pretty severe. I have no reason to be herxing right now so I’m feeling quite discouraged. Its been about 1.5 months on the mino and I haven’t noticed much improvement. My AP doc also has me on an herbal tincture which has cats claw, grape seed extract, amongst other potent herbs. I can only tolerate a few small drops if I take more the “herx” is severe.

My blood tests are as follows. I am still having trouble interpreting, I have are an ASO of 350, Igenix lyme test which isn’t positive, my IGM results were : 18+ and 41+ and the IGG 41++ all other bands for both were negative or indeterminate. Lastly my mycoplasma pneomia igg is 725.

My question for the group is , is there anything else I should be doing? Should I advocate for more antibiotics from my AP doc? Should I force myself to stick with the two doses of mino per day despite the heartburn and nausea? Should I go paleo or gluten free? Cut out caffeine? There are so many paths to take and I’m overwhelmed as to what to try next. My biggest symptoms are aches in my legs, extreme fatigue , depression, dark circles under eyes. I am becoming so depressed it is scary. Every moment of everyday is such a struggle and at only 28 I don’t know if I can live the rest of my life like this. As a reminder, all my symptoms started in july of 2015. After getting root canals extracted I noticed some improvement but hit a wall.

I still have a tooth that has a filling from a year ago that hurts almost everyday. Both mainstream and holistic dentists think its healthy but when I press down on it I feel my aches in my legs become worse. Part of me thinks I should get it pulled but I have over 3 molars missing in my mouth and the thought of losing a 4th is very very depressing. I’ve read that lyme can cause teeth pain so not sure if getting more teeth pulled is rational but I am desperate.

Thanks for listening.

Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin

[Maz]

Hi Darling,

Any chance you can add a signature line with everything you are taking currently – abx, herbals, other supps, etc? This can help in taking a look at the broad picture. That being said, at just 6 weeks in, this is still very, very early days. The first few months are usually pretty rocky, after which small windows of light might poke through for a few hours in a day or every few days. Then, these windows start to last longer and longer. At such an early stage, it wouldn’t be a good idea to add yet another abx to the mix and risk more herxing, but this is just my fellow patient opinion. Yes, the autoimmune paleo diet is an anti-inflammatory diet and many people have had huge success with following it and eliminating inflammatory foods. Gluten is just one food-type that is an offender, but also an important one for many. If you have the finances, your LLMD should be able to run the Cyrex gluten-autoimmune testing for you to see which types of gluten are your offenders, but it is a costly test. I think the blood sample is shipped off to their lab.

Questions for you: As you are experiencing some nausea and heartburn, are you taking your mino on an empty stomach with a full glass of water and what times of day? If with food, what kind of food are you eating?

You mentioned aches in your legs but not specifically your joints. This could be how you are herxing, but has your doc tested your thyroid? Hypothyroidism (even subclinical) can cause severe muscle pains, especially in the hip flexors, thigh and upper arm muscles. Just a thought. As so many rheumatic patients also have overlapping autoimmune thyroid issues, it is very worth getting baselines run at intervals, anyway, including thyroid autoantibodies. It can be amazing how much better one feels when the thyroid is appropriately balanced and how awful if not. Also, optimizing Vit D levels can be very helpful.

Re: your aching tooth, only you can decide what to do about it. If it’s been hurting since it was filled, has your dentist tried shaping it to ensure that there are no high bits causing the pain? Do you wear a night guard if grinding? Have you tried oil pulling with coconut oil and use a water pick? Just thinking of some easy things to try before going the extraction path.

Have you discussed trying a pulsed protocol for your mino with your LLMD? Although it isn’t ideal for Lyme to do this, at some stage we all have to decide if we want quality of life or to aggressively hit the bugs. There are up and downsides to both paths, but one idea might be to ask if you can lower your dose to a pulsed protocol and then gradually increase to daily dosing as you can tolerate it. In addition, when things begin to settle a bit, you could ask the doc about adding a second abx on the off mino days (like azithromycin or amoxicillin) to help to lower the ASO titer. It’s just that doing too much at once, so early, could make matters worse in terms of die-off and herxing.

Quite often pain syndromes are the result of blocked detox pathways in the body. The dying bugs release their payload of endotoxins, flood the body, and set up a nasty vicious cycle of the body struggling to eliminate the toxins. Asking your doc about the MTHFR gene mutation and effective detoxing strategies could very help with this and, if you haven’t started focusing on this to any great extent yet, you can just try simple home remedies, like drinking plenty of water and doing the lemon/olive oil detox regimen, as well as the epsoms/peroxide baths. There are plenty of roads to Rome, so to speak, but it might take you time to forge a bit of a plan for yourself and do things slowly, one at a time, to see what helps and what doesn’t.

Just some thoughts…hope something helps a bit.

[PhilC]

darling787 wrote:

My aches in my legs and mouth are pretty severe. I have no reason to be herxing right now so I’m feeling quite discouraged. Its been about 1.5 months on the mino and I haven’t noticed much improvement. My AP doc also has me on an herbal tincture which has cats claw, grape seed extract, amongst other potent herbs. I can only tolerate a few small drops if I take more the “herx” is severe.

I think your doctor’s treatment of your condition is excessively aggressive. Adding that herbal tincture on top of a full dose of mino is just too much, too soon. If I were in your shoes, I would take a break from the herbal tincture, and I would not resume taking it until I began to feel much better (consistently).

darling787 wrote:

Should I go paleo or gluten free?

Either or both may be helpful. Have you tried cutting out all dairy products? When I had muscle pain, eating any dairy product would cause an increase in muscle soreness within hours.

darling787 wrote:

Cut out caffeine?

It’s unlikely to help much, and you probably need it to help overcome your fatigue. I know I did.

You mentioned previously that you were drinking a lot of alcohol. If you are still doing that, I see it as being a much bigger problem. It’s especially bad if you’re drinking before bedtime, because alcohol interferes with your body’s ability to obtain restful, restorative sleep.

darling787 wrote:

My biggest symptoms are aches in my legs, extreme fatigue , depression, dark circles under eyes. I am becoming so depressed it is scary.

I believe that you would probably benefit from supplementing with magnesium. The form that I recommend is magnesium malate. Magnesium citrate is also good, but at least some of your magnesium should come from magnesium malate — the malate is believed to help with muscle pain. I use both. Avoid magnesium supplements containing magnesium oxide (it’s almost worthless). Soaking in a bath tub in which Epsom salt (magnesium sulfate heptahydrate) has been added may also be helpful.

Phil

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

[lemons]

Hello Darling,
Firstly I really shouldn’t be sitting here, writing on this forum, as I am in the process of moving house. I am meant to be packing but instead , reading posts , drinking coffee ( that can deplete B vitamins which may cause dark circles under the eyes) and ignoring the empty cardboard boxes that need to be filled. However, when I read that you are taking Cats Claw , I felt compelled to reply.
I decided when diagnosed, to add many supplements to my diet. I thought by throwing in as many herbs , vitamins and minerals alongside the Minocin, would help to eradicate whatever was causing this disease. I also thought that as these supplements are “natural “, they wouldn’t do any harm, I was wrong. Cats Claw was the worse , my symptoms roared back with all the severity of when I had my first flare. My AP doctor told me to stop taking them straight away, and when I did , the pain subsided dramatically.
Some of these natural supplements are extremely potent and should be used with care. I know we are all different, but from my experience ,I agree with Phil and would be very cautious about adding anything to the mix when in the infancy stage of being treated with AP.
I can relate very much to your depression , I found this, the hardest to deal with , but that has now gone and I am sure it will be the same for you too. Give it time, this treatment can take a while to work.
Nancy x

[darling787]

Thank you all so much for your thoughtful responses ( especially while trying to move @ Lemon!).

I guess because I am newly sick (Symptoms for a few weeks before starting antibiotics, thought not mino until 6 months in) my AP doc thinks it can be eradicated very quickly. My symptoms have always been deep muscle aches (versus joints) and I do not have any form or indication of RA…my illness really is “mysterious” which makes me even more anxious about the likelihood of AP working since most people on this forum have a concrete diagnosis (or at least it appears that way!).

Before starting Mino 1.5 months ago I was on over 10 different antibiotics starting when I first got sick in July. Most seemed to work initially for about a week and then I continued to get sick. My symptoms were constant deep muscle aches, throat infections, fatigue, swollen glands, fevers. I was on pencillin for over a 1.5 months and barely helped. It was finally after getting my root canals out in Oct. the throat infections have stopped. But the muscle aches are daily. My AP docs has tested my thyroid and pretty much for everything under the sun and most was normal. She thinks it “could” be lyme and mycoplasma.

I didn’t realize how potent cats claw was…I think I’ll definitely back off for now. My current regimens are as follows

250mg Mino 2x/ day, glutathione, b12, multi, probiotic, 800mg vitamin d, 1000 vitamin C, l-glutamine, and colloidal silver. I am also taking the herbal tincture of cats claw (2 drops per day) and a medication called Sedalin for sleep (some kind of bark). I have also been on 50mg Zoloft for 6 years and always wonder if this contributes to my issues. I have had bouts of insomnia from this drug but have had many unsuccessful tapers.

I try to take my mino at about 11am (3 hours after all my vitamins and probiotic) and again at 6-8pm. 11am I take without food…6-8pm with food. If I take late than 8pm I will be up all night with a gagging feeling…and sometimes even if taking at 8pm with dinner I get the gagging feeling.

I know I need to cut out alcohol, improve my diet, etc and I hope I gain the strength and courage to do this. I am trying so hard to live a normal life, go out with friends, date, etc. but it’s catching up with me.

Thanks again for your support.

Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin

[darling787]

I will also add I continue to have chest pressure/ pain/ palpitations. This was a symptoms back in the summer as well. Luckily I am able to exercise and wondering if its just anxiety but I may need to go back to a cardiologist. I had an EKG and ECO in August and both were normal.

Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin

[lemons]

Evening Darling ( its 7pm in the UK )
I have spent all day filling up a van with stuff that I cant remember buying , and am now sitting on a box in an empty house ready to move tomorrow. Beside me I have a mug (packed away the glasses) filled to the brim with red wine and we have ordered a Chinese take away. Yes I still drink and no I have not given up the occasional blow out of really unhealthy food.
Looking at your last post, I was diagnosed with suspected sero negative RA. The rheumatologist wasn’t 100% sure back in 2013, but insisted I should take methotrexate, which I declined.
I saw another rheumatologist a few months ago , at the same hospital. She said my symptoms were not typical RA. When I suggested that maybe it was because I had been treated with Minocin for a year, she dismissed this and changed the subject to the benefits of swimming and light exercise. She wouldn’t discuss my remission, I am not a big fan of rheumatologists.
In my uneducated and humble opinion, your symptoms scream Lyme and some form of strep bacteria. You also are on a very high dose of Mino, 3,500mg a week ? I achieved remission on 300mg per week. I do firmly believe that a clean diet is the key to supporting the immune system and helps in achieving remission, but junk food once in a while, in moderation is fine. I only drink red wine now and organic with no sulphates, bit more expensive, but its worth it !
My Chinese food has arrived so I will stop rattling on.

[lynnie_sydney]

Hello darling

I agree with lemons that your symptoms do seem to indicate Lyme and this is what I’d be following up on

My biggest symptoms are aches in my legs, extreme fatigue , depression, dark circles under eyes.

I also agree with Phil that you would almost certainly benefit from magnesium supplementation which would help the extreme aches in your legs. Even when not dealing with Lyme, extreme aches in the legs are most often a sign of magnesium deficiency. Magnesium supplementation is something that is recognised as part of Lyme treatment. It may also be contributing to your palpitations. Lots of info on this on the internet. Here is one site:
http://www.lymeinfo.net/magnesium.html

Dark circles under the eyes can be a sign of dairy intolerance. It’s one of the first physical signs my AP Doc noticed in me.

I also agree with the others that your medication seems way over the top for the start of your treatment. Your dose of mino is extraordinarily high and the herbal additions also likely to be contributing to symptoms. I’d consider omitting the cats claw and discussing with your doc a lowering of the dose of mino you’re starting with.

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)

[Linda L]

Darling
If you can stop Zoloft for a week and see if the palpitations stop. Also I would go to another dentist and ask to retreat your tooth. Go for the second opinion. What Maz has written about the high bits is very important. I had huge headaches for many months until I realized that one of the teeth which was treated before had that tiny high bit. The moment it was polished my headaches stoped. I couldn’t believe it! So you tooth is very important.
Linda L

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

[lynnie_sydney]

Darling
You’ll need to discuss with your Doctor if you are intending to stop Zoloft

Do not stop using Zoloft suddenly, or you could have unpleasant withdrawal symptoms. Ask your doctor how to safely stop using Zoloft.

http://www.drugs.com/zoloft.html

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)

[darling787]

Thanks everyone! I would need to slowly taper the Zoloft. My body is VERY sensitive. I tried a taper a few months back and felt a million times worse. Until I feel more stable with whatever else is going on Im scared to go off. Although its a bit of a chicken or the egg problem because part of me thinks Zoloft is somehow contributing to my muscle pains..and it definitely contributes to my insomnia. Anyhow..thanks for all in input! I will definitely talk to my doc about magnesium and see if I can add it in!

Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin

[Maz]

Think you might find this link rather interesting, darling…a number of SSRI accounts of side effects from this class of drugs and people having great difficulty tapering off them, including GI, neuro and muscle pain effects:

http://www.cchrflorida.org/paxil-and-zoloft-withdrawal-symptoms-worse-than-doctors-tell-you/

Just a thought, but alcohol doubles the effect of SSRIs, so maybe something to consider in terms of contraindications possibly causing nasty side effects?

http://goaskalice.columbia.edu/answered-questions/it-okay-drink-alcohol-while-zoloft

If you can, try to add a signature line with all your meds and supps as it can really help to generate responses from folks. Hoping you feel better soon!

[lar1962]

Hi there;
I wanted to check in and see how you are feeling? I see that you were having problems after dental work from a few years past. Has this improved?
I too was healthy until I had dental work done over 20 years ago and then RA started. I am currently being treated for lyme and now working with a biological dentist as well.
Hope you are doing better…

[Author]

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