This is topic When To Seek Mainstream M.D. ? in forum Medical Questions at LymeNet Flash.

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Posted by Bartenderbonnie (Member # 49177) on :
I have a dilemma. I have severe spinal cord pain, going on for over the past 6 weeks. I hate to blame Lyme for everything but seriously, it is the root of all my problems.

I told LLMD about unbearable pain at my last visit, last week.
She gave me acupuncture. I have also had trigger point injections. Unfortunately, nothing worked.

New symptoms are vibrating teeth and tongue, radiating lower spinal cord pain that wraps around to front lower pelvic floor pain and fullness. My hair feels like it's standing on ends.

Old symptoms that I had are now back, only worse. . . blurry vision, insane tinnitius, dizziness, crazy pain that never goes away, just feeling AWLFUL.

I don't feel like getting abused by a neurologist.
I don't feel like getting a spinal tap.
I don't feel an x-ray would be of value.
Yet, its time to seek medical attention.

Who do I see ?
Who can help me ?
Posted by HW88 (Member # 48309) on :
I'm so sorry BB. I wish I knew how to help or give suggestions. Some of my symptoms I can't find relief for either. I just have to wait for them to ease.

Have you stopped or changed meds? You were doing pretty good for a while, right?

I wish I could give you a real hug, but I will send you a virtual hug from afar.

Keep us posted on how you are doing.
Posted by Lymetoo (Member # 743) on :
Awful.. I'm so sorry to hear this. Maybe you could convince the neuro to begin with an MRI?
Posted by Bartenderbonnie (Member # 49177) on :
Thank you.
Weighing my options.
Gonna call LLMD.

I was doing so well so I returned to work.
It's been all down hill since.
Very discouraging, to say the least.

Keep treating, keep fighting, just keep standing.
Posted by HW88 (Member # 48309) on :
How are you BB? I've been thinking of you!
Posted by Bartenderbonnie (Member # 49177) on :
Ahh, what a blessing you are HW88. 🌟
I'm hanging in there. Called LLMD. Wanted me in her office.
Not practical. . . It takes me a few days to find transportation to office and back.

Pain is finally controlled. It took 3 lidocaine patches, pain pill, and Xanax at bedtime to get focus off of misery. Couldn't tell you the last time I felt good, been awhile.

I don't feel like myself ?
Vagus nerve is firing full throttle in my belly. I'm scared but don't know why ? I hate feeling like this.

I know we have all been through this before, many times, but it doesn't make it any easier. Hoping tomorrow will be better for each and every one of us. 💚
Posted by HW88 (Member # 48309) on :
I'm glad you pain is somewhat controlled. I have vagus nerve issues too. I'm so sorry.

Keep us posted. I will be praying for you!
Posted by Bartenderbonnie (Member # 49177) on :
Finally will be getting into Neuro doc this week.
Over 2 month wait.

Quick question to our neighbors to the north in Canada. . .
You have universal health care. How long do you guys wait to see a specialist ?

The longest I waited was for a dermatologist, 3 months.

I want to make the most out of my visit and am writing down questions to ask.
Does anyone have suggestions on how to proceed with non-believers of TBI's in mainstream medical ?

I believe my pain is caused by Bartonella invading my spinal cord, bone marrow, tissues, or all of the above.

My LLMD ordered extra blood work this month to check on my status and maybe change-up treatment accordingly. But results won't be ready in time so no proof for naysayers.

Any ideas welcome. Thanks.
Posted by MichaelTampa (Member # 24868) on :
Have you tried FSM for the vagus nerve?
Posted by Lymetoo (Member # 743) on :
How did it go, Bonnie?

I was blown away a few years ago when I first met my neuro. He is from India and when he found out I had had Lyme, he said, "That explains everything! Lyme affects your whole body!"

I was in shock! Needless to day, he's a keeper.
Posted by Keebler (Member # 12673) on :
It's one in a million to find a neurologist who even knows anything about lyme -- or how to sort out when other things are also in the picture. IMO, if they are not LL and TBD literate, they can't know how to sort out what other things might be issues.


If you've gotten recommendations from others who may know about this neurologist regarding his level of knowledge not just with lyme but all other TBD, too . . . then you might include.

Otherwise - and really for any first appointment with a specialist -- do not tell them what you think.

They need to know some basic facts: what's happening.

the "why" is not for a patient to say before they've had a chance to assess. Hear first what they have to say.

That is the sole reason you are there: to hear what they think and what they recommend.

Then you can ask a few questions and a conversation, perhaps. Pay attention to what they say, not what you want them to say.

Then you can determine if what they say makes sense in light of all else - and consider their suggestions - in concert with your LLMD, of course.

[ 04-04-2018, 05:18 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
Some things that might be suggested but for those with lyme / TBD, these immune suppression treatments can be very problematic:;f=3;t=036530;p=0


Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
Posted by Bartenderbonnie (Member # 49177) on :
Went to Neuro.
I'm in the medical maze once again. All I can say is "WHY ISNT OUR WORD GETTING OUT ABOUT TBI's ?

Thanks to technology, Neuro had my ER visits from 2 years ago .Said they ruled out Lymes. I said I was diagnosised by LLMD in Dec '16 with Lyme and Bartonella. He wanted to know what is a LLMD and what is Bartonella. I explained my situation, told him not to worry about treating me for my Lyme Disease or for my pain. I simply need a thorough Neuro examination on my spine and I heard he was the best.

He examined me for 35 minutes. Should have shaved my legs.
Ordered me blood work and x-rays. Got them done today.
Ordered me cymbalta ? Ordered me physical therapy ? Ordered me electrical conduction test of legs ? Pretty sure I had that done before, had to stop test, so painful.

Can't get MRI unless these steps are taken first. Said maybe lumbar puncture. (Not)

He was very knowledgable and I listened attentively. I shook his hand and thanked him for seeing me. I'm just very discouraged that I'm in this position again. In the medical maze, tests that never show anything, dying inside, but looking well otherwise.

Maybe if 1 doctor, any doctor, were in our bodies for 1 day, we would hopefully get our answers we so desperately seek.

Hanging in there, keep fighting.
Posted by Keebler (Member # 12673) on :
Be sure to research very well cymbalta before you decide if you want to do that or not. It can have some very strong consequences. My guess it would take about 10 hours of basic study at the least from various sources that are not related to the manufacturer.

It won't address the cause, though, only cover up and, again, could cause other issues.
Posted by Bartenderbonnie (Member # 49177) on :
Right you are Keebler.

Holy smokes, left doctor's office with 4 pages of disclosure of side-affects for patients. 4 PAGES !
Posted by Phoiph (Member # 41238) on :

Awhile back, I offered to help you with mHBOT, which over time cured my severe, whole body nerve pain (and Neurolyme, Bartonella, Babesia, and other opportunistic infections).

I know you mentioned finances being an issue, but people have accomplished this with few or even zero resources.

The offer still stands...if and when you are ready...just let me know.
Posted by Bartenderbonnie (Member # 49177) on :
Much appreciated Pholph

You have helped so many over the years,

Currently, my spinal cord pain is on the front burner.
It might be a bone infection, which would be a DEVESTATING diagnosis. I'm working on getting a MRI. There are certain procedures one must do first before being able to get one.

But if it is an infection of the bone, it would be a condition which is covered for HBOT treatment through insurance.

Don't count me out just yet. . .
I'm in it to win it !!!!

Will keep you posted, thank you so much.
Posted by Phoiph (Member # 41238) on :
I would never count you out, bartenderbonnie!

Just keep in mind that the HBOT treatment you would receive for a bone infection would likely be a very different protocol (higher pressure, etc.) than what you would use for chronic Lyme, so you would still need to follow up your initial treatment.

Also, let the docs know that because you have other chronic infections, you may need to start slowly and work up to the higher pressures that they use. This is true for many with chronic infections even with lower pressures. Otherwise, you can release more toxins/die off than your body is able to handle in a short time period.
Posted by Bartenderbonnie (Member # 49177) on :
Hey thanks Phoiph,

That's really valuable information.

Just returned from physical therapy. It only made things worse, pain is off the charts again.

X-Ray showed mild arthritis in lower spine.

Once you're in the medical maze, it's hard to get out.
Every time you try to get out, they keep pulling you back in.
Posted by Keebler (Member # 12673) on :
Just say "no" if that's what you think you should do. Do not have to be compliant to the grade school principal, so to speak.

IMO, no one with lyme should see any physical therapist who has not had some kind of formal training with ILADS, just like the physicians who become LL.

I've had so much damage from PTs who were lyme/TBD ignorant. Lyme/TBD changes so much about the body in so many ways. No one teaches that in the physical therapy coursework.

Massage worked so much better for me than physical therapy ever did. Sad, though, that insurance doesn't usually cover the modalities that helped me the most, though.

But I could not continue to allow non-LL/TBD folks to do their malpractice on me and continue the cycle of damage.

Ask your LLMD and all lyme support groups around for PT recommendations. Also check out FELDENKRAIS.
Posted by Bartenderbonnie (Member # 49177) on :
Fight for your health rights. Stay in the battle.

Finally, after 6 months of daily spinal cord pain, jumping through insurances hurdles and procedures, I got a MRI test approved.

Been through this before. Dying inside, tests are normal.
Searching for pain relief, diagnosis, documentation. Anything to get well.

Had I been diagnosised properly 5 years ago, I wouldn't be spending millions of their precious money along the way. Penny wise, pound foolish. Ass - backward non-believers.

P.S, Energy levels maintaining at high function presently so I have ALOT of fight in me, ha ha, Watch out !
Posted by Bartenderbonnie (Member # 49177) on :
Update ;

Over 5 months of excruciating spinal cord pain.

Waited 2 months for a appointment with a neurologist.

4 weeks at 2x a week of insurance mandated physical therapy, which I failed.

Got MRI done 8 days ago. Spinal cord pain 8 or 9 on most days. Waiting on doctor's office to call me. Finally today I drove there and asked for a copy of my MRI results. Didn't read it until I got home. . .

Diagnosis ;

At L3-L4;
Disc desiccation with broad-based disc bulge and mild posterior facet hypertrophic changes creating mild central and mild bilateral neuroforraminal stenosis.

At L4-L5;

Disc desiccation with small midline disc herniation exerting mass-effect on the thecal sac and exiting bilateral nerve roots.

Yikes, this is serious folks. Another huddle to climb.
Explains the pain.

I ve been researching this for over 4 hours trying to find any reliable sources connecting this to Lyme patients. I haven't had any luck. I have found posts written by other Lyme sufferers asking the same question but no one has any documented research articles that correlate the two.

Need help with where to look for information before I proceed with treatment. Thank you.
Posted by Tincup (Member # 5829) on :
Check your email box buttercup!
Posted by Bartenderbonnie (Member # 49177) on :
Thanks Tincup.
Posted by Blackstone (Member # 9453) on :
I'm so sorry you had to go through all of that, but I'm glad you have an answer - or at least another piece of the puzzle. Especially those of us who have been ill for quite awhile it can become commonplace to associate any changes in our health with tick-borne illness or secondary to it directly, but sometimes other things can happen! Its always good to have other physicians and specialists who respect and are aware of your Lyme, like any other chronic condition, but assess you from other angles so that nothing is missed.

That MRI result can absolutely cause the symptoms you're listing - I know many with disc issues, including a family member of mine, that had very similar.

As indicated in your report, discs out of place (bulging, herniated) are not just painful in and of themselves, but can press on nerves and narrow/constrict where they should be running (aka stenosis) adding to another sort of pain, instability and a lot of the neurological issues you've listed.

You may want to consider very carefully before taking medications like Cymbalta. As you know it has many potential side effects, but know that unlike other meds commonly prescribed for neurological pain, it is a SNRI antidepressant overlapping into that sphere so to speak. Comparatively, Lyrica and Neurontin do not have that SNRI aspect so it may help to discuss alternatives with your physicians if you're concerned. I should also mention that sometimes the so called 'nerve pain' classes of drugs are not the best pain relievers in cases such as yours, is because your pain isn't being caused by overactive nerve response or something similar, but rather because something is physically pressing on that nerve that shouldn't be! Especially now that you have this diagnosis, if your pain relief is not sufficient I would consider finding a pain management specialist (that at least respects your Lyme diagnosis in addition to your back problems) so that all options would be on the table.

These sorts of issues are very common and there can be many, many contributing factors. I've not been able to find a connection to Lyme directly causing these kinds of back problems. I don't doubt that Lyme and other TBI can certainly make the experience more difficult but I've not found any direct links between having Lyme causing these sort of back problems. I have no doubt there may be a hypothetical here or something extrapolated from a study there, but unless some really significant data arises its unlikely that Lyme is a primary causative reason for spinal disc issues as described

I hope things go more smoothly for you from here out.
Posted by Bartenderbonnie (Member # 49177) on :
Thanks for replying Blackstone.

If I can offer any advice that I have learned through my 5 year medical nightmare, it would be be your own health advocate.

The old adage 'No news is good news' just doesn't pertain to our current medical system. After my Neuro doc recieved and read my MRI results, it was his JOB to follow through with his patient. If I hadn't physically drove to his office to get my results, I still would not have know that I've been walking around with 2 herniated discs. Listen to your body folks !

A simple phone call like " Hi Bonnie, the doc would like to see you to go over your test results and plan a course of action."

I called the office the next day and asked to see the doctor to explain my results. The receptionist said the doctor is now booking for the END of July. I said this is unacceptable as my condition is deteriating. I got appointment in 2 weeks. Unbelievable.

The reason I mention Lyme with this latest diagnosis is because I suffered severe muscle and collegen loss. That's noticeable on the outside of my body. . .imagine what these filthy scavengers do to the inside of your body ???? And ALOT of Lyme patients suffer from back problems, spinal cord problems, central nervous system problems, ect. Couldn't find any published articles on this though. Thanks for trying Blackstone.

Lyrica caused seizure like feeling. Through them in the garbage.
When I picked up cymbalta with 4 pages of side effects, I through them in the garbage as well.

My story isn't the exception. . . It's unfortunately the norm.

P.S. I don't believe there is a shortage of doctors.
There are just more sick patients that the medical buisness model and pharmaceutical industry strive to keep us in perpetual illness and disease.

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