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Posted 2/9/2021 2:34 AM (GMT 0)
Hi all.

On this forum on the “new to Lyme” has a huge list of symptoms.

There are so many symptoms. Is there any medical problem not on this list?

My question is who created this list? Where did this info all come from and how accurate is it.

Every time I have a symptom I go to the list and the symptom is there.

I convince myself to go to a specialist for a particular symptom then I see it on the list then I’m not sure if I should go.

As an example I have very bad stiffness in one leg and muscle pain on the back of the calf and hamstring on that leg. I am having a hard time walking. I also have a very bad balance issue and disequilibrium and I sway when standing. I’m getting worried that I have another serious disease. But when I see the symptoms on the list then I question what to do.

The balance and swaying issue makes me want to go to an ENT or a neurologist to have testing done but when it’s on the list I second guess myself and think that maybe it’s a waste of time and money.

Over the years I have done some testing but my symptoms are worsening and I’m really scared.

Any opinions on this?
Posted 2/9/2021 3:24 AM (GMT 0)
I have had equilibrium/ propriocaption issies which led me to shuffle around... including muscle pain going down back of leg and decreased hip mobility on one side. Neck issues etc. I had swaying sensations when still.

So... I've had chiropractic care off and on for years. Well these things seemed to be unhelped by adjustments lately ...proprio issues and equilibrium issues can be related to certain spinal misalignments. Especially c1-2 area. But still I started getting less relief.


Well I was just about to do mris etcbecause nothing was helping anymore.. well I just couldn't get over how I thought my hip issue was part of the prob.

I eventually resolved issue with massage to loosen up musculature fiollowd by trying three different chiros and the last one who actually realigned my hip joint ( he was stronger and maybe I was looser from massage) ... it stopped the proprio issues. I had s stuck hip joint that was making my whole spine including cervical completely rotated off and caused super problem.

Sharing in case this avenue can be helpful.

My hip is now back to a point where I'm getting the shooting sensations and tightness and back of head hurst. Heading to chiro this week. Wish I could get massages again..
I know those symptoms are scary and debilitating. Don't give up. Keep searching. Hugs.
Posted 2/9/2021 3:27 AM (GMT 0)
The first list I see that Cajungrl posted has sources at the end of her post.
She may have been a Mod years ago.

Because lyme and all the coinfections that piggy back can invade the blood, tissue, brain, organs... etc etc - it’s no wonder it can cause such a long list of symptoms.
Posted 2/9/2021 3:35 AM (GMT 0)
Prior to lyme I was tested for so many things - including autoimmune diseases. I had CT scans, mri’s of my brain, cervical and thoracic spine.... sent to two an ENT specialist, two endocrinologists, a neurologist (to rule out ALS, Parkinson’s disease and MS), a Physiatrist , and Neurosurgeon.
The symptoms of Lyme can mimic diseases.
Finally tested positive for Lyme and responded to treatment.

aphysicalwreck - are you currently treating?
Posted 2/9/2021 3:48 AM (GMT 0)

Girlie said...
Prior to lyme I was tested for so many things - including autoimmune diseases. I had CT scans, mri’s of my brain, cervical and thoracic spine.... sent to two an ENT specialist, two endocrinologists, a neurologist (to rule out ALS, Parkinson’s disease and MS), a Physiatrist , and Neurosurgeon.
The symptoms of Lyme can mimic diseases.
Finally tested positive for Lyme and responded to treatment.

aphysicalwreck - are you currently treating?

I’ve been through it all too. All of the ones you mentioned plus some.

I am treating right now. I’m on azithromycin every other week, rifampin and I was on dapsone but I took myself off because I was afraid of becoming anemic. I was only on 10 mg of methyl folate.
I know you mentioned that’s all you were on but lots of people were saying that’s not enough. You have to be on leucovorin so I got nervous.
I asked my dr about it but he didn’t get back to me.
It’s just hard to accept a Lyme diagnosis. The testing is so poor. I have some positive bands.
But every lab is different. I had a positive 23 and 39 from one lab but never from any others so it’s kind of strange.
I had a borderline positive babesia from igenix and lots of IND’s from igenix too.


Posted 2/9/2021 3:55 AM (GMT 0)
I was on 10 mg of Leucovorin -

Is it more absorbable than methyl folate?

Ok - I remember your post now...
Posted 2/9/2021 4:02 AM (GMT 0)

Girlie said...
I was on 10 mg of Leucovorin -

Is it more absorbable than methyl folate?

Ok - I remember your post now...

I thought you said you were on 10 mg of methyl folate.

So that’s why I’m nervous about it. Because it seems most people are taking leucovorin with the dapsone.

I texted my dr last Thursday about my concerns and he never answered me.

I think I will text him again.
Posted 2/9/2021 4:09 AM (GMT 0)
Lol

I wrote this:

“ I’m taking methyl folate 10 mg. “

Is Leucovorin absorbed better than methyl folate?
.. or what is the difference?

My first sentence I was quoting what you said. smile
But - I was on Leucovorin and was wondering what the difference was.
Posted 2/9/2021 4:16 AM (GMT 0)

Girlie said...
Lol

I wrote this:

“ I’m taking methyl folate 10 mg. “

Is Leucovorin absorbed better than methyl folate?
.. or what is the difference?





My first sentence I was quoting what you said. smile
But - I was on Leucovorin and was wondering what the difference was.

I’m not really sure what the difference is. I’m on my a dapsone group on fb and most people say you must be on leucovorin in on dapsone.

Horowitz’s protocol uses it plus methylene blue.
Posted 2/9/2021 5:38 AM (GMT 0)
When I was on dapsone I just took l methyl folate and was fine. I was trying to save money at the time and doc said it would be ok. Blood work always came back good. It wasn't the double dapsone though just 100mg/day.
Posted 2/9/2021 8:33 AM (GMT 0)
I think my dose was only 50 mg per day of Dapsone.
I will check tomorrow - laying in bed now.. smile
Posted 2/9/2021 1:36 PM (GMT 0)

Lightlife said...
I have had equilibrium/ propriocaption issies which led me to shuffle around... including muscle pain going down back of leg and decreased hip mobility on one side. Neck issues etc. I had swaying sensations when still.

So... I've had chiropractic care off and on for years. Well these things seemed to be unhelped by adjustments lately ...proprio issues and equilibrium issues can be related to certain spinal misalignments. Especially c1-2 area. But still I started getting less relief.


Well I was just about to do mris etcbecause nothing was helping anymore.. well I just couldn't get over how I thought my hip issue was part of the prob.

I eventually resolved issue with massage to loosen up musculature fiollowd by trying three different chiros and the last one who actually realigned my hip joint ( he was stronger and maybe I was looser from massage) ... it stopped the proprio issues. I had s stuck hip joint that was making my whole spine including cervical completely rotated off and caused super problem.

Sharing in case this avenue can be helpful.


My hip is now back to a point where I'm getting the shooting sensations and tightness and back of head hurst. Heading to chiro this week. Wish I could get massages again..
I know those symptoms are scary and debilitating. Don't give up. Keep searching. Hugs.

Thank you so much for your input. I contemplated chiro but i decided to pursue physical therapy. I had only two sessions so far. He is working on balance by doing vestibular exercises and working on building up my muscles to help my walking issues.
I hope it helps because I cant live like this.
I wish you continued success!!
Posted 2/9/2021 1:45 PM (GMT 0)

WV Mike said...
When I was on dapsone I just took l methyl folate and was fine. I was trying to save money at the time and doc said it would be ok. Blood work always came back good. It wasn't the double dapsone though just 100mg/day.

Thanks for your input. I just took a ton of blood work. If all is ok I might start the dapsone again. I dont think I will go past 50mg though unless my dr gives me the luecovorin.

Are you doing better?
Posted 2/9/2021 1:53 PM (GMT 0)
I think leuvocorin is another form of folate, similar to methylfolate, but comes in a standardized Rx form. Another chance for pharma to mark-up a cheap drug and charge you too much is my guess, but i dont know that for sure. I think its only available by rx?

aphysicalwreck, are you on any medications? I felt like this when i was on gabapentin, very dizzy and unable to balance.
Posted 2/9/2021 2:13 PM (GMT 0)

dcd2103 said...
I think leuvocorin is another form of folate, similar to methylfolate, but comes in a standardized Rx form. Another chance for pharma to mark-up a cheap drug and charge you too much is my guess, but i dont know that for sure. I think its only available by rx?

aphysicalwreck, are you on any medications? I felt like this when i was on gabapentin, very dizzy and unable to balance.

I think that the leucovorin is better then methyl folate.

I am on rifampin and azithromycin right now. I was also on dapsone but got scared of it because of the methyl folate situation.

I have had lyme for years with treatment off and on. All of a sudden this past summer I started to treat with herbs (not even anywhere near full dose yet) and I started to get worse.

It started with lightheaded feeling. Little by little things got worse and worse. I was very functional before and I am no dysfunctional. It lead to a huge problem with weak legs and a disequilibrium problem. I had to hold on to the walls to walk.

At that point I went to a new LLMD and started antibiotics. I am not any better yet. The only thing that is better is that I dont have to hold on to the walls but I still have the issue.

I still sway when standing, weak legs and stiffness and muscle pain in left leg. Its very difficult to walk. Plus my usuals. Internal shaky feeling, head tingling, head pressure etc. the list goes on and on.
Posted 2/9/2021 3:07 PM (GMT 0)
Just know the difference between sore muscles and a clot in the lower leg.

Backed up blood flow will make your leg hard when you palpitate muscle with your thumb ect.
Posted 2/9/2021 3:28 PM (GMT 0)

astroman said...
Just know the difference between sore muscles and a clot in the lower leg.

Backed up blood flow will make your leg hard when you palpitate muscle with your thumb ect.

I know. It’s scary.

I had a Doppler done. All was good.
Posted 2/9/2021 5:02 PM (GMT 0)

aphysicalwreck said...

astroman said...
Just know the difference between sore muscles and a clot in the lower leg.

Backed up blood flow will make your leg hard when you palpitate muscle with your thumb ect.

I know. It’s scary.

I had a Doppler done. All was good.

---------------------------------------------------------
One less thing to wonder about...............

.....and I may have just learned something. I know regular Ultra Sound is area specific. Does the "Doppler" cover the whole body- are you in it like an MRI?

If so this sounds great to do for some people with circulation/swelling issues as its hard to tell blood vs water/edema/body fluid. Drs just give the usual "I dont know" which is pure laziness on their part when diagnostic means might actually exist. Im tired of doing their job!!!!!!!!!!!!!(rant).

Half the people in ER are there because regular Drs were incompetent.

If car mechanics were like this, everyone who's not mechanical would have to replace their cars regularly lol.
Posted 2/9/2021 5:29 PM (GMT 0)
about the huge lyme symptoms list.

Note to all here: All these infections can cause havock on your thyroid.

Everyone here need to understand thyroid health and full panel testing and what these tests are and mean. Do not just take a Drs word for it (not uncommon to be misled in thyroid info).

Low thyroid puts every body system in poor health. You cant very well combat infection with "low fuel". Thyroid hormone is fuel for every cell in your body. Low normal vs optimal is not the same either, a Dr might say it doesn't matter...... wrong.
Posted 2/9/2021 5:44 PM (GMT 0)

astroman said...
about the huge lyme symptoms list.

Note to all here: All these infections can cause havock on your thyroid.

Everyone here need to understand thyroid health and full panel testing and what these tests are and mean. Do not just take a Drs word for it (not uncommon to be misled in thyroid info).



Low thyroid puts every body system in poor health. You cant very well combat infection with "low fuel". Thyroid hormone is fuel for every cell in your body. Low normal vs optimal is not the same either, a Dr might say it doesn't matter...... wrong.

I agree.

I’m on thyroid meds. I am hypothyroid plus Hashimotos
Posted 2/10/2021 4:55 PM (GMT 0)
Hey, Astro:

Have you ever read about the potential connection between the cervical spine and thyroid disease?

Thyroid Disease And Your Cervical Vertebra C7
https://hypothyroidmom.com/thyroid-disease-and-your-cervical-vertebra-c7

I just found the above article and I thought about you.
Posted 2/10/2021 6:21 PM (GMT 0)
Dude,

Thats interesting. I getting my c1 /atlas adjusted by the NUCCA method in a couple weeks. Thats the mother of all spine joints. Gotta keep moma happy.

I'll see what this adjustment does. Regular chiro avoids it, as its tricky.

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

That hypomom site seem to be improving. The STTM site has value, but is run by a emotionally crazy person (per my one-on-one experience), who sees things one way.

---------------------------------
thanks Dude
Posted 2/10/2021 6:30 PM (GMT 0)
I’m interested in hearing how your appt goes, Astro

You already know what I think about the Atlas focussed chiros
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