So Discouraged

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KB69
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Date Joined Jan 2017
Total Posts : 216
   Posted 12/7/2017 11:55 AM (GMT -7)   
I don't know how to keep doing this.

My LLMD put me on Zoloft for Lyme-anxiety, which emerged in force in the last 3 months as I have been going after Lyme with Bicillin shots. The prior 9 months, it was infrequent and manageable (when I was treating Babesia).

After 3 weeks on Zoloft, my gastritis is back and I'm extremely dizzy (side effects of the drug). I had to stop taking oral antibiotics due to gastritis in August.

Now, I've come full circle: gastritis=no orals=bicillin shots=unrelenting anxiety=zoloft=gastritis. Today, I begin weaning from the Zoloft to heal my stomach. Again.

I know folks here are/have been up against it with Lyme/co's. Many have been fighting harder and longer than I have. I'm usually tough and not a complainer. I keep my head down, and just try to get through.

But, it's been a year of treatment, and out of three infections, I've only kicked one (Babesia).

And this week? I'm so discouraged. I'm in tears writing this. I'm tired, frustrated and so sick of being sick and trying to figure out how to get better.

I just don't know how to keep at it when every bend in the road seems to bring a whole new set off bumps.

Thanks for reading -- I needed to share it with people who get it.

Rikky1
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Date Joined Jun 2015
Total Posts : 2597
   Posted 12/7/2017 12:03 PM (GMT -7)   
Yup sounds like my story and I've been at this for 3 years so I can empathize for sure.

Are you sure you've kicked babesia's butt entirely? It usually doesn't go down quietly and can take 6-24 months to truly eradicate. Your anxiety may not be Lyme and still Babesia. Anxiety is primarily a Bart symptom but it can also come out with Lyme and Babesia.

If you can draw a good correlation between treating Lyme with Bicilin and anxiety flaring up than its probably Lyme or Bartonella which are both treated using abx.

Have you looked into doing IV abx? There are many more options than just doing injections.

Girlie
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Date Joined May 2014
Total Posts : 27961
   Posted 12/7/2017 12:22 PM (GMT -7)   
KB - It's the Zoloft that is causing the gastritis?

If so, is there any way you could take it so it doesn't? Do you take it with food? Or does it have to be on empty stomach?


What about trying a different med for anxiety?


I'm sorry you are frustrated with this.....hang in there.


((hugs))
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

KB69
Regular Member


Date Joined Jan 2017
Total Posts : 216
   Posted 12/7/2017 1:54 PM (GMT -7)   
Rikky -- I have Bartonella, too. I haven't even begun to treat it. I treated Babesia for over 6 months, and haven't had any symptoms of that for the last 3. So, I'm pretty sure I'm dealing with Lyme and Bartonella at this point.

The anxiety is at it's worst when I herx from the Bicillin. So, it's either hitting Lyme or Bart or both. I am supposed to add Sida Acuta and other herbs for Bartonella once my Bicillin schedule is set. But, the herxing has delayed me from getting to the full dose (I'm currently at half).

I had a friend who had Lyme, and was on an IV and took over a year to heal. He's never relapsed after 10 years. But, if it took him an entire year to simply heal from Lyme, and I had two co-infections, maybe this is just a long haul. I don't have to tell you, if you've been battling for 3.

Girlie, most SSRI's carry the risk of "stomach upset" broadly defined. I think because my stomach has already been irritated by the oral antibiotics (and had been previously by overuse of NSAIDs when I didn't know I had Lyme), any SSRI will likely be a challenge.

I have Lorazepam on hand for "emergency attacks" (I've only used it twice in the past few months). But, it's addictive if used routinely over a long period of time, so it's not a standard option.

I know ultimately I just need to make inroads on the infections. It's just taking so long. Like I said, one year in, one down and two to go. Doesn't feel like progress. But, maybe I should just stop judging.

PeteZa
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Date Joined Jul 2015
Total Posts : 9217
   Posted 12/7/2017 3:29 PM (GMT -7)   
KB, I had anxiety and depression and I had to go and talk with someone. I was always a very well person and being sick was super hard for me. I did not know how to be sick. I was okay for 3 days with a cold, but lyme was surely something else.....

I did take a lot of varied herbal "trys" for depression and anxiety. The anxiety was maddening. I felt like I had to do something but I had no energy to do it.

The depression was cry, cry and cry. I had bloodshot eyes and a red nose for months. I was so blessed that hubby is kind and gentle. We have been together for so long that he knew how hard it was for me to accept being ill.

I tried essential oils, herbs, amino acids, sounds and I never gave up. What worked the best for me was being in or by water. I don't know why. I guess it was just my happy place. Just glad that I found it. So it ended up being a daily event for me. I would either go to the lake, the river or just stand in the shower - I was at my happy calm place.

goshawk
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Date Joined Sep 2016
Total Posts : 1341
   Posted 12/7/2017 4:09 PM (GMT -7)   
Hi KB69

I understand exactly how you are feeling. When I reached a year of treatment this past September I was very discouraged and saddened that I was still sick with Lyme and co infections.

It's Ok to cry and even be mad about this. Its hard when we don't have a conventional or understood illness with a specific fix it all cure. Treatment alone is hard to navigate, not to mention the symptoms. expense and the unknown.

That all being said...we do have something very special here on this forum.

It is haven for when we are beaten down or confused...or when we are desperate.

A place to run when we have questions...and the comfort of knowing there are others like us and others hat have come before us to battle these infections. Others that are so willing to help us and share their wisdom or offer a shoulder to lean on.

Please take comfort in knowing we are here for you and we stand with you facing these struggles everyday.

I hope you have better days ahead and I wish you the best of healing, Jo

KB69
Regular Member


Date Joined Jan 2017
Total Posts : 216
   Posted 12/7/2017 5:19 PM (GMT -7)   
Peteza, I will look for that happy place. It's got to be out there!

Goshawk, your post had me in tears. It's been that type of day. I can't tell you how much I appreciate your kindness and support.

astroman
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Date Joined Mar 2014
Total Posts : 4013
   Posted 12/7/2017 6:46 PM (GMT -7)   
KB69 - have you tried the many natural supplements for anxiety? Many to try, fortunately they dont cost much.

And have your thyroid levels been tested lately. Many of these infections can make you hypo thyroid. Hypothyroid can cause or add to anxiety big time.

For some reason many Drs assume only hypEr thyroid causes anxiety; completely wrong assumption.
Had initial lyme symptoms late 80's, then again w/with bullseye early 90's. Ended ABX for Lyme in 2015. Rebuilding / repairing / fine tuning since then. What an adventure this has been. Did I mention Hashimoto sucks?

KB69
Regular Member


Date Joined Jan 2017
Total Posts : 216
   Posted 12/7/2017 7:08 PM (GMT -7)   
Hi Astro,
I just bought "Melissa Supreme" by Gaia. It includes:

Servings (40 drops) per container: 22.5
40 drops contain:
Proprietary Extract Blend:
Lemon Balm herb* (Melissa officinalis)
German Chamomile flowers* (Matricaria recutita)
Passionflower flowering vine* (Passiflora incarnate)
Fresh Skullcap herb* (Scutellaria lateriflora)
Fresh Wild Oats Milky seed* (Avena sativa)
Gotu Kola leaf* (Centella asiatica)
Mineral salts extracted from Kelp** (Laminaria digitata)
Herb Strength Ratio: 1:2.5
Other Ingredients: Pure vegetable glycerin and water.
*Certified Organic Ingredient
**Ecologically Harvested

I haven't tried it yet. But, I've heard Avena Sativa, Chamomille and Skullcap are helpful, so I'm hoping the combination will be a good one. If you have any other thoughts, I'm open.

I did have my thyroid tested beyond the basic test (something about the T3 transition to T4 being low, but all other numbers were fine). So, I take a supplement for that.

I appreciate your thoughts,
Kelly

astroman
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Date Joined Mar 2014
Total Posts : 4013
   Posted 12/7/2017 8:23 PM (GMT -7)   
T4 converts to T3. Some people are only low in T3 due to it not converting well from the T4 storage hormone. Our livers take a beating killing all these critters and from the "ammo" we use to do this. Thus liver detoxing is important for thyroid health too.

www.naturalendocrinesolutions.com/articles/do-you-have-a-t4-to-t3-conversion-problem/ :

"about 20% of the conversion of T4 to T3 takes place in the liver, and so if you don’t have a properly functioning liver then this can also cause problems with the conversion. And just because the liver enzymes look fine on a blood test doesn’t mean that you don’t have any liver problems. While these tests can be helpful to rule out any serious liver conditions, if someone’s liver has a reduced ability to detoxify due to other factors, such as all of the toxins we’re exposed to through the food we eat and the environment, then this can reduce the liver’s ability to convert T4 to T3. So if someone has a problem converting T4 to T3, then a liver detoxification program may be beneficial.

Adrenal Problems. Having high cortisol levels can affect the conversion of T4 to T3. A lot of people have this problem, and in most cases it is due to stress. So it is of course important to do a good job of managing one’s stress levels. And if one has high cortisol levels, then in addition to proper stress management, certain herbs may be necessary on a temporary basis to help lower the cortisol levels, such as a combination of Ashwaganda and Rehmannia."

------------------------------------------------------------------------------------------------

***My thoughts on anxiety: Its also quite often a combination of adrenal issues........... and brain chemical imbalances (neurotransmitters) or its blocked pathways.

Gaia has quite a few relaxation "mixes", this one looks pretty good. These are all general nervous system calming herbs....a good place to start, a natural and affordable "band aid" of sorts that work for many but dont get to the cause. BUT if it works, great. If not......look further:

Adrenals. Anxiety "surges" are quite often from over worked adrenals. A 24hr saliva adrenal test help take some guesswork out of it ($150 from ZRT labs). Tired adrenals can sometimes show up as low and high in different parts of the day and can overreact from the smallest stressor, leaving you with anziety for hours.

Gaia also has a few adrenal or stress mixes with the more "adaptogen" herbs, or try separately:

/draxe.com/7-adaptogen-herbs-to-lower-cortisol/ holy basil is the calmest one of most of these.

Ever had neurotransmitters tested? Genetics, hormones, and how "toxic" our bodies are have a direct effect on these. Fine tuning brain chemistry is best not rushed and best with one supplement at a time until you know the reaction. You can go direct with the nuerotransmitter influencing amino acids like 5-HTP, Gaba or L-theanine. The amino acid methionine, or its "short cut" SAM-e are more for depression, but have been known to help anxiety as well. The mineral salt Lithium Orotate in small 5mg doses kind of "opens up" most or all of the neurotransmitters pathways and is not to be confused with the more powerful phyc med lithium. Note: none of these amino acids should be combined with Rx meds similar to Zoloft.

Sometimes supplements from one of these above areas are are all thats needed, sometimes all three of these areas. The "mixtures" like what you purchased are a good quick try, vs individual supps.

I have tried many of these and eventually learned what individually worked best for me (cheaper too) as I had anxiety and adrenal issues for the long haul. I still take a few as needed.

My personal favs were holy basil and 5-htp when anxiety was at its worse point. The more I improved, the more sleepy these made me.

Then I changed to the calming, yet non-drowsy effects of amino L-theanine combined with relaxing passion flower for longer lasting effects.

Today, I can only use 5-htp or holy basil if I'm really revved up as I'll get sleepy from it, guess thats a good sign.

Post Edited (astroman) : 12/7/2017 11:49:49 PM (GMT-7)


Kat1000
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Date Joined Feb 2017
Total Posts : 557
   Posted 12/8/2017 9:49 AM (GMT -7)   
Hi KB69 - oregano oil has really helped my stomach heal from antibiox. I use it as soon as I start having pain or upset. I can only tolerate one drop in the morning with my other herbals and need to drink a smoothie or something afterward.

I also started using essential oils. I've been told Young Living and Doterra have the purest oils. Look on the bottle to make sure it doesn't say "for external use only." My rep tells me that if it says that she wouldn't even use it externally.

I haven't tried Melissa but have read good things about it. I recently tried their polyphenol capsules for inflammation. Too soon to tell yet. Diffusing the lavender oil at night has improved my sleep.

We all definitely have times where we feel we can't swallow one more pill or one more herbal concoction or deal with the pain or other symptoms one more day. It helps to look at your improvement over a period a months rather than to get focused on a day or week. I have borreala and bart, though the LLMD thinks we are now only dealing with bart. I have had days where I feel, dare I say it, normal, and so it is especially hard when the symptoms hit. If I do anything too physical I feel it, so I know I'm not there yet.

I also try to remember that this is a way I'm being told to slow down and be more selfish of my time. It's really helped me to say no to things I wouldn't have otherwise.
pos for MTHTR single mutation; Positive Igenix IgG Jan 2017
March/Apr '17: doxy, Tinizadole. 5/1 samento and exchange mino for doxy. 5/28- switch mino back to doxy, added activated charcoal. 6/9 - stopped antibiox; staying with samento, red root and houttiya and supps. 7/10 added LDN; 8/24 rifampin, samento, red root and supps

KB69
Regular Member


Date Joined Jan 2017
Total Posts : 216
   Posted 12/8/2017 11:38 AM (GMT -7)   
Astro -- such good information there. Yes, what you reference by way of the T4 to T3 conversion is what I am addressing. I also had my adrenals tested via the "spit test" and was found to have low DHEA, so I am supplementing for that.

I will look into Holy Basil and 5-HTP. It seems like a lot of people swear by Holy Basil. Thanks for your ideas.

Kat -- thanks for your thoughts on the oils. One question on oregano oil, is it an anti-bacterial? I think I have heard of people using it outright to treat Lyme.

Would you share with me how you are treating Bart? I started this journey a year ago thinking I was just dealing with Lyme and Bart, but after beginning treatment for Lyme, and initially feeling better, I hit a wall when Babesia symptoms emerged.

I treated Babesia for 6 months, and have had no symptoms in the last 3 months, which is great. But, now I'm back to square one with Lyme and Bartonella. Because I can no longer take oral ABX, I'm planning to add herbs for Bart to my IM Bicillin injections for Lyme.

My LLND suggested Sida and Isatis. I know Houttuynia is also a major component of the Buhner protocol. Would love your thoughts on what might be working for you on the Bart side. I think I'm slowly making inroads on Lyme, but I've got to figure out how to tackle Bart without ABX.

Thanks so much.

Kat1000
Veteran Member


Date Joined Feb 2017
Total Posts : 557
   Posted 12/8/2017 11:54 AM (GMT -7)   
KB69 - I've been off and on antibiox, but here's what I done that I can remember (you know how the memory goes, right?!)

First few weeks did Gundry diet. (current version is Plant Paradox). LLMD also had me do a superhealthy smoothie involving a powder (UltraClear), berries, cinnamon, lots of greens.

Then I did doxy every day and tini 3x a week.
Third month went to mino/tini 3x a week and started samento.

5th month I think had candida and started oregano oil drops. I have read some people took high doses to "cure" but I can't imagine how unless they put it in a capsule. It burns.
Also added red root and activated charcoal.

Couple months on samento/red root/ activated charcoal/vit d/vit c/probiotics/glutathione.
Added in houttinya.

Mid - august added rifampin. Have been on and off, sometimes taking with doxy or mino.

Currently, going to try 2-3 weeks alternating mino/rifampin and mino/tini. Herbs are now cats claw, japanese knotweed, red sage, scullcap, houttinya, banderol, sida acuta. I started taking them twice a day and noticed an improvement. Also, activated charcoal, vit d and c, probiotic, glutathione. Deep blue polyphenol complex by doterra (only a couple weeks so not sure if it's doing anything). Added great lakes collagen to smoothie.

I also try to go 3-4 times a month to acupuncturist and massage (sometimes swedish, sometimes, lymph).
pos for MTHTR single mutation; Positive Igenix IgG Jan 2017
March/Apr '17: doxy, Tinizadole. 5/1 samento and exchange mino for doxy. 5/28- switch mino back to doxy, added activated charcoal. 6/9 - stopped antibiox; staying with samento, red root and houttiya and supps. 7/10 added LDN; 8/24 rifampin, samento, red root and supps

Kat1000
Veteran Member


Date Joined Feb 2017
Total Posts : 557
   Posted 12/8/2017 12:01 PM (GMT -7)   
FYI there's a treatment for lyme in my essential oil book, but I kind of scoffed that oils could treat lyme. I will say the rep made me a "pain bomb" out of about 5 oils and it does help my pain when I roll it on the area. Also, the book doesn't mention coinfections.

Everyone is so different and there's a lot of trial and error. I realized at some point I'm a bit of a guinea pig, and that's when I started adding in some things on my own.

I was doing more detoxing too: epsom baths with purify oil (doterra name for it), lemon water, alka seltzer gold. I've been off my routine and I'm feeling it, so this is a good reminder to focus on me again.

I realized in looking at my signature on here, I also took low dose naltroxene for a couple of months. it seemed to help at first but then it didn't, so don't know if it was that or something else.

Hope that helps!
pos for MTHTR single mutation; Positive Igenix IgG Jan 2017
March/Apr '17: doxy, Tinizadole. 5/1 samento and exchange mino for doxy. 5/28- switch mino back to doxy, added activated charcoal. 6/9 - stopped antibiox; staying with samento, red root and houttiya and supps. 7/10 added LDN; 8/24 rifampin, samento, red root and supps

KB69
Regular Member


Date Joined Jan 2017
Total Posts : 216
   Posted 12/8/2017 12:07 PM (GMT -7)   
Thanks, Kat. That's quite a memory, if you ask me!

It sounds like you're on a solid herbal regimen. Do you think adding the herbs has been a game changer?

I've been on Doxy, Azithromycin/Mepron (Babesia), Omnicef and Ceftin, Bactrim and now Bicillin injections. I take Red Root, Japanese Knotweed, Skullcap, Hawthorne and other supplements, including ones you mentioned. But, I've yet to do cat's claw and the herbs for Bart, which I'm hoping will help.

Regarding acupuncture, do you think it helps with direct healing, detoxifying or both? I have a great acupuncturist, but have had to cut back on my time with him as I've started seeing a neuromuscular therapist and she's really expensive. I just wonder if I should bite the bullet and go back to acupuncture regularly, too. Just curious as to how you think it helps you.

Thanks again!

Kat1000
Veteran Member


Date Joined Feb 2017
Total Posts : 557
   Posted 12/8/2017 12:31 PM (GMT -7)   
Hawthorne! Recently added that one too.

Acupuncture works really well for me for detox. I think it helps with symptoms too but it doesn't stick unless I go at least every other week. I initially started going for knee issues (may have been lyme, looking back) and I was down to once a month. I was playing tennis, hiking with no issues. So I do think it can help if you can go frequently enough.

I'm also struggling right now with hormones as I think I'm finally getting close to menopause (I'm in my 50s). Dealing with flashes and sweats. I was reading that low estrogen can cause these and muscle pains, so I want to explore that more.

Other than samento (now switched to cats claw), houtt and red root, the rest I've only been on 3-6 weeks so not sure of the impact yet. I do notice symptoms have changed, so I always take that as a sign something is getting stirred up - which is good even if it feels bad. I had a whole week in mid-october where I felt really great. I'd been off the rifampin/doxy for a week and only on herbals. So the answer is I really don't know. I threw in the others when symptoms resurfaced.
pos for MTHTR single mutation; Positive Igenix IgG Jan 2017
March/Apr '17: doxy, Tinizadole. 5/1 samento and exchange mino for doxy. 5/28- switch mino back to doxy, added activated charcoal. 6/9 - stopped antibiox; staying with samento, red root and houttiya and supps. 7/10 added LDN; 8/24 rifampin, samento, red root and supps

KB69
Regular Member


Date Joined Jan 2017
Total Posts : 216
   Posted 12/8/2017 12:50 PM (GMT -7)   
Thanks again, Kat! Appreciate all of your thoughts.

Kat1000
Veteran Member


Date Joined Feb 2017
Total Posts : 557
   Posted 12/9/2017 9:26 AM (GMT -7)   
I remembered one other thing based on my reading, I did a parasite cleanse, which involved ordering some capsules off of amazon and taking them for 10 days. When I read Buhner, he mentioned that there are parasitic qualities, and then I found someone's blog who did a cleanse and used Buhner and claims to have healed. I do think it helped.

Thought honestly, today isn't great. All I did last night was help carry in the tree and set it up, and I started hurting last night. It's a horrible disease.
pos for MTHTR single mutation; Positive Igenix IgG Jan 2017
March/Apr '17: doxy, Tinizadole. 5/1 samento and exchange mino for doxy. 5/28- switch mino back to doxy, added activated charcoal. 6/9 - stopped antibiox; staying with samento, red root and houttiya and supps. 7/10 added LDN; 8/24 rifampin, samento, red root and supps

KB69
Regular Member


Date Joined Jan 2017
Total Posts : 216
   Posted 12/9/2017 4:10 PM (GMT -7)   
Thanks for the tip on the parasite cleanse.

I'm glad you were able to set-up your tree. That's an accomplishment! I'm sorry that you ended the evening in pain, however. Hang in there.

I have been ordering gifts from Amazon because I haven't felt able to go shopping. Dangerous with brain fog, I realized today, as I received a shipment and had ordered two of a the same pair of slippers and two of the same kid's game.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27961
   Posted 12/9/2017 5:53 PM (GMT -7)   
KB69 said...

I have been ordering gifts from Amazon because I haven't felt able to go shopping. Dangerous with brain fog, I realized today, as I received a shipment and had ordered two of a the same pair of slippers and two of the same kid's game.


Gosh darn! Hate when that happens!



(That hasn't happened yet...but I definitely could see it happening)


Hopefully you can send the duplicates back?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Kat1000
Veteran Member


Date Joined Feb 2017
Total Posts : 557
   Posted 12/9/2017 8:45 PM (GMT -7)   
Oh my - yes, I can relate! I either double order or think I've ordered and haven't.
pos for MTHTR single mutation; Positive Igenix IgG Jan 2017
March/Apr '17: doxy, Tinizadole. 5/1 samento and exchange mino for doxy. 5/28- switch mino back to doxy, added activated charcoal. 6/9 - stopped antibiox; staying with samento, red root and houttiya and supps. 7/10 added LDN; 8/24 rifampin, samento, red root and supps

KB69
Regular Member


Date Joined Jan 2017
Total Posts : 216
   Posted 12/10/2017 6:56 AM (GMT -7)   
Let's just hope Santa never gets Lyme! smile
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