HealingWell
Search Close Search
☰

Pain and fatigue in arms, legs and neck

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/11/2023 10:41 PM (GMT 0)
I am dealing with pain in my lower arms, hands, neck, lower legs and feet. I feel that I can’t hold up my head and I am nearly completely bedridden. My physician is treating me for Bartonella and mold based on old tests and symptoms. I seem to be getting worse with every little illness. I just got over a virus and had a bad sinus infection and was put on antibiotics. I feel that can never regain strength. I am taking Nutra-Brt and lots of supplements but I am struggling. I don’t know if it is a herx, flare or crash because my activity threshold is getting smaller. I suddenly can’t do anything because of this pain and fatigue.

Has anyone had issues of extreme debilitating fatigue and pain like this? I feel like my physician is guessing and not giving me advice of expectations and what to do.

My other symptoms include severe diarrhea, anxiety, night sweats, nausea, and severe insomnia. Each day I wonder if I am going to make it.

Also, I get lots of drainage that I swallow because of the weather and my problems just explode. I have tried MCAS supplements and antihistamines and I continue to have the same ups and downs. When I think it is working, think again. I stopped the MCAS and I see no difference, the same general downhill spiral. I think the Nutra-Brt mixed with thunderstorms, mixed with low threshold is all coming together.

Has anyone else had such extreme issues after weather and feel that nothing helps? I have been battling this for years where numerous physicians drain me financially and getting no where. I am tired of hearing, “try this, it will make you feel better”.
Posted 4/11/2023 11:24 PM (GMT 0)
Sorry for your suffering. Have you removed yourself from the mold exposure? If you are still in exposure, it’s going to be hard to make progress.
Posted 4/12/2023 12:01 AM (GMT 0)
We remediated twice but I still don’t think I can get my Hertsmi less than a 10. Unfortunately my husband does not believe that things are bad enough to get out right away and “we fixed it”. This has been its own battle. My health does not seem to be a deciding factor. We must stay for my son to finish high school. This is been ongoing for 6 years. We have finally purchased a new home where I can get away but this will be a period of time. I am taking binders but I don’t know if I can trust this house. I have other safe place t go and we are not near any family or friends. But the move will get us back to my family and friends. I just need to ‘endure’. He just thinks the doctors need to fix me now even though the problem is never fully resolved. That is a whole other story. We have spent too much money on my health and fixing this house to keep coming back to problem after problem. Everyone, and I mean everyone, says to get out but he said we have to wait and it has been fixed. This past year was the tipping point of mold in a wall because the house was built with cheap materials (but the house isn’t cheap) and then I got Covid. I have not recovered from anything since.
Posted 4/12/2023 1:15 AM (GMT 0)
Oh, wow! I am so sorry. Unfortunately, women seem to be more adversely affected by mold than men, and men seem to be hardened against the truth and reality of the situation.

Sounds like the mold situation is pretty bad. If you feel your life is in danger, please get out with or without your family. I have been living in my car in the backyard for the past 2 years. Remediation didn’t work for me either.

Praying for you that God will give you the practical help and wisdom you need and healing for your body and soul.
Posted 4/12/2023 1:22 AM (GMT 0)
One year pre-COVID, I got a transient virus from my child that left me bedridden. I had post-viral myositis (when an immune system that doesn't know when to turn off attacks your muscles), muscle wasting, extreme POTS (especially after barometric pressure drops), dizziness and proprioception issues, MCAS, and neuropathy. It was terrifying. COVID is especially good at causing these complex and debilitating post-viral syndromes. Have you joined any long-COVID groups to see if anyone has valuable tips?

As for the mold, I'm so sorry you aren't able to get to a safe space and that your family doesn't prioritize your health. That must be heartbreaking! Do you have an air purifier that filters below 0.1 microns to catch mycotoxins? (The AirDoctor is often on sale for half off.) A new mattress and bedding encased in six-sided barriers so they can't be contaminated? Can you spend time in an area of the house as far from water incursion as possible, possibly with a dehumidifier and as few contaminated belongings as possible? Just some ideas. I'm sure you've already thought about these things.

It's so frustrating to have a healthcare professional you don't trust. Are there other options nearby?

Have you read the book Toxic by Neil Nathan? It covers Bartonella, mold toxicity, MCAS, and many other debilitating conditions that coalesce to make patients especially ill and hyper-reactive to treatment. Reading that book was a major turning point for me, so I thought I'd mention it.

I hope you find some relief soon!
Posted 4/12/2023 1:30 AM (GMT 0)
P.S. - Possessions that have been in a moldy environment will be contaminated by mycotoxins. Here’s a good article regarding that issue. https://paradigmchange.me/wp/stuff/. It might sound crazy, but it’s a reality. I can’t go near the possessions I had in the moldy houses I have been in. I have instant reactions and can even smell it.

Regarding the remediation. Do you believe that all the contaminated materials were removed, or do you think there’s still mold that they either left behind or never found?

It’s very hard to clean the air using air purifiers. I had our remediators use Aerosolver Pure to help remove the airborne particles following the remediation. It definitely made a difference. In my case, I don’t believe they removed all the sources.

Anyone can do the Aerosolver Pure protocol with the recommended fogger. It costs a few hundred dollars for the supplies and equipment and takes manual labor to fog and wipe everything down following the specific instructions.

If you do it, make sure you use a dehumidifier only after you finish all the wipe down. It will put a lot of moisture in the air.

Here’s the website; http://www.aerosolver.com/
Posted 4/12/2023 7:48 AM (GMT 0)
We had the house wiped down and I do think some stuff is still contaminated. I have air purifiers by Air Doctor.

I can’t sleep from the intense pain throughout my body and I am sweating continuously. I feel worse after sleeping. I used to feel bad after sleeping but once I good moving I was better. Not anymore. There is no relief.

I have changed doctors so much because my husband would get upset over me not getting better and spending money. But the problem was the house and it became a game of toss the blame and I was the football.

I was committed to getting better by the time my son graduated but now I don’t know if I will even make it that long. I can’t take care of myself and I don’t have a support system. My needs have to be convenient for others. As long as I can still move and walk to the bathroom (which is a struggle) then I am ok it seems to others. Or I have a better day or moment. But I don’t see those better days coming anymore.

I want to thank everyone for their support. I have gotten more feedback and conversation interaction with you than with anyone else. It seems that I can’t talk about my illness, even if someone asks. I was seeing a therapist but I could not afford it any longer and I was getting no where. My husband and son don’t really want to hear how I am doing and just leave me in bed alone. My description of how I am doing better be 1or 2 words. I cry in bed alone and my husband just wants to go come join him on the sofa and watch tv with him. He doesn’t understand how difficult and uncomfortable that is. Just a few days ago I could but not anymore.
I am pausing my treatments because that is all everyone tells me to do until I see a doctor. I reduced some amounts at first but I don’t have a clue. My tests are also indeterminant, equivocal or negative. I was treated for months with antibiotic years ago and saw no improvement. Time was all that helped. Diet didn’t even help.

Now I am 50, taking a couple of college b college lasses because I wanted to doing some booking work as a slow move back into work and I don’t even know if I can finish. I was a high school teacher of a very advanced course for years and I tutor online in the evening now just to make a few bucks. I think that will all have to end because I am starting to crash from just that.
Posted 4/12/2023 11:40 AM (GMT 0)
RaginCajun,

My heart breaks for you. Praying that God will do miracles for you. You mentioned COVID and a virus and sinus infection and not being able to recover back to baseline after that.

You also mentioned: “other symptoms include severe diarrhea, anxiety, night sweats, nausea, and severe insomnia.” This cluster of symptoms together sounds like the results of bad mold exposure to me. Individually, those symptoms could be Lyme/coinfections, but together they make me think really bad mold exposure that is ongoing. Diarrhea could also be from antibiotics or C-diff as a result of antibiotics. Make sure you don’t have C-diff, as that requires treatment.

There are a few treatments that I think could help you right now. They’re not going to cure you or get you normal, but they could improve your quality of life.

1. Ivermectin and/or Alinia

If you already have either of these, they can help you overcome the negative effects from COVID/virus/sinus infection. Both have been used by LLMD’s long before COVID, as they are often helpful for Lyme patients and are anti-parasitics.

I took two weeks of Ivermectin followed by two weeks of Alinia. It helped me a lot with fatigue, exercise intolerance, and pain levels. I recently have done a few rounds of Ivermectin again following a virus/sinus infection I had in December. It has helped a lot. If you need help getting these drugs, ask on here about where to get it.

2. Rx Antifungals - Fluconazole and Nystatin

Both have been helpful to me. For years after moving out of the first moldy house, I floundered in constant pain and perpetual herxing from taking small doses if herbs trying to treat Lyme/coinfections. I remembered reading that some mold doctors believed mold patients’ guts and/or sinuses were colonized with fungi/yeast, so I asked my new Lyme/mold doctor if I could try antifungals. I did (in 2019) and still remain on them. That was the first treatment that gave me improvements from the toxin pain and everlasting symptom roller coaster I was on.

3. TUDCA

This supplement did things for me that are hard to explain. Within the first 2 weeks, I started having normal herxes - flares of symptoms followed by lasting improvements. It got rid of whole body numbness and toxin pain and greatly improved my chemical sensitivities which were absolutely disabling. I believe it helped my liver to get toxins out. It also has an effect on histamine or mast cells.

I have used CellCore (best), Microbe Formulas (2nd best) and Nutricost brands. I started with the CellCore formula. That’s the one that made a world of difference for me. I later switched to Nutricost because of the cost.
Posted 4/12/2023 1:05 PM (GMT 0)
I'm so sorry, RaginCajun.

Another thought is that menopause might be wreaking havoc on your body, combined with whatever combination of long-COVID, mold exposure, and tick-borne illness might be inflicting. Have you explored that angle? Perhaps hormone replacement could help the sweating, insomnia, pain, fatigue, digestive disturbances, anxiety, etc. since those are such common symptoms of menopause, which for some can be quite debilitating even separate from the other issues you are dealing with.

I'm sorry you can't see your therapist anymore. You need to have some sort of emotional support going through the stress of a disabling chronic illness, even when you have a supportive community! Finding a forum or maybe an email buddy through a long-COVID or chronic Lyme support group might be better than nothing? Would empowering book suggestions be helpful?

I hope that one day you are able to be more independent and that you are surrounded with people who have empathy for others. The way your life is right now is not what anyone deserves. At my worst, in the post-viral state I mentioned, I was how you describe in terms of my abilities. There was no way I could have tutored or finished classes! I would crawl to the bathroom, but otherwise was in bed all day, and needed supervision to bathe safely. My partner brought me my food but mostly was busy with work and caring for our child, so I was in a room alone all day, and the isolation was horrible. Months went by in which I didn't go downstairs in my house or see my dog (who lived downstairs only). My partner carried me downstairs when I needed to go to medical appointments, which didn't help, and which ended up costing so much money. I was fortunate to have some empathetic friends and family, although everyone has a full plate, and no one helped in any practical ways. I was quite frightened and sure that I would not survive. But eventually I did find a way to get better. Keep reaching out and gathering ideas. One day something will change. Trust that.
Posted 4/12/2023 2:40 PM (GMT 0)
WalkingbyFath,

I was on Ivermectin for a couple of weeks, given antimicrobials and binders but continued to get worse. My physician said to stop taking it and try the Nuta-Brt. I was bit by a cat when I was a kid but not sick. Then massive thunderstorms kept coming this past week through here in the South along with up and down temps and bad allergens. I kept going down.
I am to see my functional med doc on Monday. My allergist has tried so much but allergy meds have done nothing, neither has nasal sprays.
I hope to get a clearer path what to do next. I have heard about TUDCA and will ask more about it.

Saraeli,

I tried hormone replacement a couple of times, but when I would start having problems again, I had to stop to prove it was not that. Another long battle between my husband and the doctors. He doesn’t know anything about protocol, tests, or duration of anything. Pop a pill and you should feel better!


Thank you for all of your advice.
✚ New Topic ✚ Reply