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» LymeNet Flash » Questions and Discussion » Medical Questions » Lyme alive in me for 25 years and counting?

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Author Topic: Lyme alive in me for 25 years and counting?
Sick4ever
Junior Member
Member # 50679

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Sick again and not sure how much longer I can take this. Is there anyone on this site who thinks this is Lyme damage to me or possibly active lyme or co-infection.
Mornings always worse as when circulation or nervous system becomes active. I need a pain killer and am so inflexible have to sit on stairs to dress self.

Neck then starts cracking creaking and on a bad day can't look at light and have little or no appetite.

Mid spine I have chronic pain every day sometimes knife like or aching constant and feels like joint is going to dislocate if I twist of lift anything heavy. Cannot stand for more than 2-3 hours without mid spine throbbing with sometimes radiation of pain along right thoracic nerve. Have 2-3 herniated discs and arthritic degenerative changed in this area but it does not show on mri anything putting pressure on spinal cords or nerves. Then why the pain? Feels inflamed but normal blood work for inflammation.

Extreme irritable bowel and not getting better

Teeth pain on and off and sometimes severe as if at dentist without novacaine.

Weakness in legs and trip a lot on steps and walk with somewhat wide gait.

Tinnitus is an indicator of a flare up. When my tinnitus starts getting really loud like last night I felt so sick couldn't eat dinner and in bed 6pm

Last 2 months right elbow started hurting and xray show calcification of ligaments and degeneration of elbow.

My right toe is now completely destroyed which is when I first got sick in 1992 was one joint to start swelling. The other painful joint was the exact area where discs are herniated in my mid spine.

Vertigo is so bad at times especially in enclosed areas like a shower and have to have on tightly to grab bars just to shower.

I smoke but not heavy and yet there is a cyclic wheezing and spitting up of phlegm that looks purulent. I have positive IGG always to mycoplasma pneumoniae and the other pneumoniaes seen many times in lyme patients.

All my joints are still prone to injury due to a laxity of the ligaments or tendons also.

My vision in one eye gets blurry for an hour or two and then gets better.

Any physical activity that gets blood really pumping makes me 100X worse. Just bending over in my garden to week causes a severe headache to develope.

Night sweats maybe about 7 days out of the month are so bad even with heat down and window open. I keep throwing out pillows in trash because pillow is soaked all the way through.

Is there anyone who has had lyme 28 years and is still extremely sick every damn day? More symptoms like muscle twitching still here after all those years.

Finally anyone tried antabuse (disulfiram) on this site and what was your experience on this drug.
Thank you

--------------------
Steroid Lyme Disaster

Posts: 6 | From New York | Registered: Jul 2017  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

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I literally could have written your letter word for word.

You did not mention if you're in treatment with a LLMD or are treating on your own.

There is NO cure for Lyme Disease, period.
Remission, yes, I got there once and returned to work after 1 year of aggressive antibiotic protocol. Stopped sseing my LLMD after 2 1/2 years due to finances and went downhill and been fighting ever since.

You mentioned mornings are tough.
Immediately upon opening my eyes, I automatically triage my body. What needs my immediate attention.

You mentioned you have spine pain and 2 -3 herniated disks.
Lyme causes degenerated disk disease.
I cannot get out of bed without 1/2 a pain killer. Then I'm on to more supported measures, lidocaine lotion or patches on my spine. Epsom salt bath will surely happen sometime in the day.

You mention irritable bladder pain.
I have IC Bladder. Lyme, Bart, and Babs LOVE the bladder.
Here is a link to a top IC Bladder Doctor that explains chronic bladder infections, diagnosis, and treatments;

https://liveutifree.com/interstitial-cystitis-treatment/
(save this. . . you'll never find info like this anywhere!)

You mention blurry vision.
I just waited 6 months to see an MS specialist in Neuro optometry. Unfortunately Lyme scared her and she passed me off to neighborhood optometrist. He diagnosised me with cataracts, I held off on scheduling surgery.

You mention vertigo and tinnititus.
These are one of the many 1st symptoms experienced by Lyme patients. It is so scary and debilitating, it is what sets them off on their nightmarish healing escapade through the medical maze.

You mention night sweats.
Let's be clear, many infections can cause fevers and night sweats but it is logical to asume it is from a Tick Borne Infection given your history and ON-GOING symptoms.
My Babs is back and my experience looks exactly like your.

So let's look at the TOTAL picture of your body's symptoms;

Vertigo
Tinnitus
Teeth pain
Bladder pain
Joint pain
Spine pain
Teeth pain
Blurry vision
Fatigue
Neck pain
PAIN
No appetite
Light sensitivity
Night Sweats
Muscle twitching

Ok, this is not a patient who is remotely in remission from Lyme and company. This is an active infection. Of what? I do not know, I am not a doctor. I am in the process of returning to my LLMD. It is my belief that only a LLMD can get us well.

Your thoughts greatly encouraged.

Posts: 1946 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Sick4ever
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Thank you. I just saw a doctor in manhatten that I was referred to because the person referring me there said they were a lyme specialist.

To my dismay his specialty was travelers infectious disease. He knew very little about lyme. I had his head spinning by the time I got done questioning him. I knew more about lyme than he did. He was concerned enough to take a lot of blood though.

Last night the tinnitus got louder and louder and then the severe malaise and could not eat dinner and in bed 6pm with a restless sleep. Felt slightly better this morning. Thanks for reply. Last Lyme md feels I have bartonella and lyme.

I can't handle more than a month of oral antibiotics now. I don't know if herxing or just antibiotics making me more sick. Took plenty of probiotics when on antibiotics.

Looking into this disulfiram since there must be something to it if there is a study being done now at Columbia and out west. If I take it on my own I'll keep you all how I do on it.

(breaking up the post for easier reading for many here)

[ 01-12-2020, 04:43 PM: Message edited by: Robin123 ]

--------------------
Steroid Lyme Disaster

Posts: 6 | From New York | Registered: Jul 2017  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
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Welcome to Lymenet! PM sent for NYC.

So sorry you are going through all of this. I agree with BBonnie - sounds like you still have an infection/infections, but I am not a doctor either.

With all due respect, you really need to quit smoking completely.

I'm sure you know a lot about Lyme Disease, but I still want to give you my compilation of very comprehensive information which I wish I had when looking for help for my son twenty years ago.

You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!

A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.

Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

Unfortunately, LLMDs are far and few between. You need to go where they are.

Also, most LLMDs do not take insurance due to the politics surrounding this disease. Read poster TF's explanation about this:

"Why Lyme Doctors Don't Take Insurance"
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Contact the NY Lyme Support Groups. Maybe they can help. They would know better about NY.

Link for NYC Lyme Support Group:

http://www.nyclymesupport.org/

Some more resources for you (including Support Groups info):
http://whatislyme.com/lyme-in-new-york/

www.empirestatelymediseaseassociation.org

http://www.lymenet.org/SupportGroups/UnitedStates/NewYork/

Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.

Also read "Cure Unknown" by Pamela Weintraub. Check your local library or buy them used on online.

View "Under Our Skin"
https://m.youtube.com/watch?v=2JgR_Jfbhv8&noapp=1&client=mv-google

and "Under Our Skin2: Emergence"
https://drive.google.com/open?id=1iAzRksyHfSNWBGsHcugYl9a8WQ9TnDCW

Here is a link to the current thread "Antabuse (Disulfiram)" on Lymenet for you to read:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=137824;p=0

Btw - I know you are new to Lymenet, but you should not use your real name, because this is a public forum with all sorts of people on it. Read this link about it:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=011844;p=0

To remove your name from the signature line, click on "Edit Profile" under Lymenet Flash in the top middle section of the Lymenet page.

Click on "Edit Profile" on the left-hand side, scroll down to "Profile Fields" then down to "Signature". Make your changes, then click "Update Profile".

Also, please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.

To do this click the pencil/paper tab, make your changes, then click "Edit Post". Thanks.

Posts: 8627 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

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There is an entire thread here on the Antabuse .. scroll down or do a search.

You could have a tick-borne illness .. but also look into EDS and possible salicylate sensitivity.

If I eat anything that is high in sals, I get tinnitus. So check your foods. Histamine in foods can also do this to me.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94079 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Robin123
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Member # 9197

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I see Lyme and babesia in this list - babs causes night sweats. If you have babesia, you will also need to treat it as well.

Number one, you need to see a Lyme-literate doc. Most ID docs are not trained to diagnose or treat Lyme and co-infections. You can post in Seeking a Doctor for an LLMD in New York, or wherever you're willing to travel to.

Number two, it's a matter of gradually finding out what we respond to. When I finally found out I had Lyme, I took clindamycin in the beginning and that took all my pain away in a week's time, after 25 years of pain!

That one worked for me. It doesn't mean it works for others. The trick is to find the treatments that are going to help you feel better.

We can give you feedback here on what helps us and you can try stuff if you want to.

Very simple remedy for me now - I take turmeric powder daily to take down inflammational pain in joints and muscles. I get the powder in bulk at the healthfood store, get empty 00-size capsules and take one in the am and pm. It's a cooking spice so I don't think we can go wrong with that.

I drink mangosteen juice to stop all eye symptoms. It's an anti-inflammatory juice. I drink the Mango-Xan version. It can be in health food stores, also can be ordered from Pure Fruit Technologies.

Vertigo - it can result from our neck vertebrae being out of alignment. When I get my neck adjusted properly, dizziness goes away. The chiropractor needs to know how to adjust necks well.

Muscle twitching shows need for magnesium - totally common Lyme symptom. We test various magnesiums to see which one(s) work best for us. Mg glycinate, citrate, etc.

Re joints - my doc recommends bioflavinoids with rutin. Also others recommend taking biosil.

Re fatigue - I lived on flower pollen for a couple years in the beginning, which gave me back my energy.

If any of your pain is close to the surface of your body, Zheng Gu Shui liniment is a lifesaver for me. Martial artists put it on their bruises. Chinese herbal stores can carry it, also can be ordered online. Pain relief is instant.

Irritable bowel - you could take a look at websites for Donna Gates and Josh Axe and see whether they recommend any gentle eating protocols that you might want to try.

Tinnitus for me went to zero for several hours after holding a PEMF coil - that's pulsed electromagnetic frequency. There are machines that put out these frequencies. A top LLMD told me it probably quieted down the nerves to my ears.

This is going to be little by little. Some with your doc, and some you can start to experiment with. I went undiagnosed for 25 years before I found out, and I literally experimented with dozens of health remedies. So when I got dx'ed, I already knew what worked and didn't work for me!

So same back at you - I suggest you start to experiment with ideas we're giving you here. Just test one thing out at a time and only very small doses at first to see if you tolerate it.

One more thing - smoking is not going to help. It puts so many toxins into the body. Some people do a step-down patch to get off smoking.

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hopingandpraying
Frequent Contributor (5K+ posts)
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I included this in my post to you above, but am re-listing it separately:

Here is a link to the current thread "Antabuse (Disulfiram)" on Lymenet for you to read:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=137824;p=0

Posts: 8627 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Medicalmaria
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This post hits too close to home.

That is a long time to be living with Lyme. Im currently living in California and have just about tried everything and gone with everyone I have been refered to.

One of my professors mentioned a doctor in Mexico that has had success with a multi-disciplinary approach that isn't embraced in the states. As of now, It looks promising, I'm going to be making a trip down after my exams. I am very hopeful that things will get better, but when I see that people have been living with Lyme for this long it makes me want to find a way to manage much sooner.

**name and link removed of supposed LLMD in Mexico**

[ 01-13-2020, 11:35 PM: Message edited by: Lymetoo ]

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Catgirl2.0
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Member # 51843

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Sick, check out EM. I used to be so sick until I tried energy treatments. Had I not tried antibiotics, herbs, biofeedback, saunas, PEMF, I never would have believed it could work. I thought it was a crock. It was through feeling like crap for so long though that I finally decided to try it. I am SO GLAD I DID!!!

I got bit again this past fall and lyme is gone with just 3 EM treatments this time. The first time I was treated with EM it took longer though, but I've learned a lot, and am SO MUCH BETTER. I have my life back.

eminusmirus.com

--------------------
Remember to keep an open mind

Posts: 49 | From earth | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
Sick4ever
Junior Member
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Thanks for your help. What is EM treatment?

--------------------
Steroid Lyme Disaster

Posts: 6 | From New York | Registered: Jul 2017  |  IP: Logged | Report this post to a Moderator
Catgirl2.0
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It's an EM session filled with energy packets that zero in on whatever a person wants work on (quantum physics). The website explains it better.

--------------------
Remember to keep an open mind

Posts: 49 | From earth | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
   

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