LymeNet Flash: Film on Spinal Disease & Arthritis

This is topic Film on Spinal Disease & Arthritis in forum Activism at LymeNet Flash.

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Posted by Cold Feet (Member # 9882) on :

Hi everyone.

I've been meaning to write this post for some time. Finally, I am ready to start a film project I've been thinking about for more than two years.

So many people in this community have suffered with spinal pain and arthritic conditions while also enduring other manifestations of Lyme and coinfections. And many others outside of this community do as well. Perhaps there are tens if not hundreds of thousands of people in this country suffering with spinal diseases caused by many different vectors (soft and hard body ticks, fleas, mosquitoes, etc.)? One needs only search through the archive of posts to see the tip of the iceberg - here's the (partial) result of a simple search query through Lymenet posts:

1. Question for those with spine pain?
2. Does anyone know why amino acids might help spine pain (nerve pain)?
3. Anyone else get strange feeling in low spine?
4. Creepy Spine
5. Anyone with tight muscles along spine making it hard to breathe?
6. Herniated Discs of the Spine and Neck and Lyme... Any Relationship?
7. Whimper, Whine. Ouch my spine!
8. Phlegm sensation in head and spine? Help!!
9. What happen when Lyme hits the Spine are CNS
10. My spine hurts...
11. My spine really hurts
12. Best treatment for brain/spine infection
13. Can't decide - surgery? Spine problems or Lyme symptoms?
14. Lyme & Spine Questions -- down and out with spine fractures
15. SPINE PAIN
16. Spine problem? Little finger and ring finger go completely numb when waking up
17. Very stiff achy neck and spine
18. I have proof of spine damage from Lyme
19. Strange sensation in spine/choking

I would like to start interviewing patients who have been diagnosed with any mycobacterial or parasitic infections (Lyme Borrelia, Babesia, Bartonella, mycoplasma pneumonia, BLO, etc., etc.). I know this a lot to ask, but some of you unfortunately fit this profile perfectly. Ideally, interviewees for the film will also have:

- Records confirming both a clinical AND blood diagnostic confirmation (of Lyme et al);
- Obvious, persistent spine pains before and/or after treatment with antimicrobials;
- Imaging studies of spine (XRAYS, MRIs) showing rapid degeneration of their spine (see post #18 above as an example).

There are many reasons why I want to do this film. I have a firm belief that the spinal disease issue is a widespread, unrecognized phenomenon that is debilitating vast numbers of people in this country. However, I also know this idea is controversial and hard to prove. Accordingly, I plan to simply frame the issues and pose questions in the film about the relationship between mycobacterial pathogens and spinal disease. There are myriad case studies specifically proving causal relationships (again, see above topics, like studies posted in #18).

I'll need your help too! If you have the time and interest, please consider these different ways to help the cause:

- If you can contribute as an advisor or committee member to help shape the arc of the film, provide feedback along the way, basically be an informal, unpaid consultant;

- Be interviewed on camera for the purposes of inclusion into this film (preferences for New England patients first, since I have no money yet), I'll travel to your home or public place;

- Help me get access to doctors and researchers, also identify some of the TOP experts that should be interviewed for this film.

I really need your help, so please PM me with any or all of your ideas.

Thank you.

Posted by bettyg (Member # 6147) on :

quite an ambitious project; good for you wanting to make a difference to all. best wishes [Smile]

xox