“This picture shouldn’t even be a thing”
By guest blogger Sofia Webster
Once a year, I gather up all of the things that I’ve ever taken for Lyme disease and I document them by taking a picture. My collection has grown so much that it now takes up half of my garage.
These pictures represent three years of Lyme disease treatment. I separated them into sections based on what symptom the pills were meant to treat. Going from top to bottom, they include: antibiotics and pain killers, toxic mold treatment supplies, vitamins and supplements, antifungals, pill containers, bicillin injection syringes, herbals and homeopathics, anti-anxiety and depression medications, detoxing supplements, probiotics and gut medicines, and used IV supplies (which includes saline, heparin, heplocks, and IV bulbs).
Not pictured are: my far-infared sauna, all my mobility aids (two wheelchairs, two canes, a walker, and a shower chair), and all the medications I was prescribed before I was diagnosed with Lyme (4 years worth).
This picture shouldn’t even be a thing. It is a thing because of the IDSA’s unfair and inaccurate Lyme disease treatment guidelines, the misinformation spread by the CDC about Lyme, inaccurate Lyme disease testing, and the oppression that Lyme patients face by the medical industrial complex. Not to mention the complexities of the disease itself, like how spirochetes can change form, hide, and form biofilms.
I wouldn’t wish the contents of this picture even on my worst enemy. Nobody deserves to be in this much pain.
Guest blogger Sofia Webster lives in Northern California.
Have you gotten better Dorothy? Need to know if there’s hope for my sister. She has used a majority of what you listed and is still dealing with Lyme.
This is written by guest blogger Sophia. My understanding is that she is still dealing with Lyme and co-infections.
I do hope she is getting better. The only relief in 17+ years was IV ABX, of course plus probiotics, digestive enzymes, candida treatment and lots of holistic treatment. Had that 4-5 years out of the 17, and did well, normal.. My last LLMD jerked my treatment about 6 years ago. I have been going downhill ever since. Like the living dead. I can no longer get treatment. I have no hope left. Of course, lost my well-paying job, health, everything else. Hope you do well and can continue to get treatment forever if you need it.
sofia, a photo means a thousand words; your photos give new meaning for the uneducated lyme/co-infection public who have no idea what we go thru and the financial costs; almost ALL OUT OF POCKET.
thank you for sharing your story and photos; they are making a huge difference in educating those with a “half-open mind” … too bad we can’t get drs. to be opened-minded to give us back quality of life again.
hugs/prayers on getting into remission and remaining there the rest of your life,
bettyg, iowa activist
46.5 yrs. chronic lyme
35 yrs. MISDIAGNOSED by 40-50 drs.
UNACCEPTABLE!
This would be a good campaign to have everyone take pictures of their regiments & send to IDSA & CDC.
Problem is they would probably hunt us all down, sue us and our doctors. IDSA especially is so scary.
I took doxyciclin for six months have bad migranes tinitis back pain joint pains one year later. thinking of getting I.V med.not sure don’t trust doctors. We are ginny pigs
So , so sorry. Yes she’s still getting IV antibiotics and being treated by a ” Lyme Doctor ” . She is still able to work from home, has insurance and is doing other things as well such as dry heat sauna, lymph massage etc. she still using a wheelchair a great deal of the time and the joint inflammation is a killer. Needs to find an anti inflammatory drug to give her some relief from this.
This is an outstanding representation of our struggles. We appear to be in the same treatment plan and timeframe. I have been keeping a journal….
I need to help my sister find a new Lyme Doctor in Iowa who takes insurance. Her current one to moving and not taking her patients with her. If anyone can help I would appreciate it.
trudy, boy, are you in luck!! i’m in iowa and i send out ilads llmd names nationwide/intl. of those i have. š
welcome š
[u]please post in our LLMD REQUEST section link found here:[/u]
http://www.mdjunction.com/forums/lyme-disease-support-forums/llmd-info/func=post/do=reply
[b]subject: show name of CITY/STATE llmd; [u]if you ARE UNDER AGE 21[/u], we need your age there too; different drs. are involved.
SHOW INSURANCE CO. NAME TOO; thanks.[/b]
i’ll help you over there; big thanks.
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bettyg, iowa
llmd coordinator
i don’t know if this site recognizes “codes” or not, so if it doesn’t; my apologies for what you will see. i’ll find out in 5 seconds when i click post!!
try the LLMD referral at http://module.lymediseaseassociation.org/referral/LogIn.php?setcookie=yes
Thank you for your brave, creative post, Sofia. I wish you well.
I have great hope for us CLD patients. Our ILADS and other LLMDs, practitioners and researchers are among the smartest, most compassionate, “determined to get their patients well” doctors in the world. We are in the best of hands. Things ARE going to get better for all of us.
I have been told this story since 2002. I do not believe it anymore. More than anything, it is a money problem. The treatment of Lyme patients by the CRIMINAL medical establishment has gotten worse, not improved. I no longer have any hope. I lost all me teeth, and cannot even get a doctor or dentist to recognize what I am going through. Oh, if I had buckets full of money I could recover. Lyme stole everything, job, money, emotional health, family, everything. I am isolated, deserted, alone. I am NOT a happy camper. I am not alone. There are multiple-millions Lyme patients out there who are in even worse shape than I am. I do not like researchers. Researchers sit back and collect a big paycheck for the rest of their lives off of government, and other grants. The NEVER do anything for any Lyme patients. It is an evil world, and nothing has changed.
I’m sorry I didn’t make it clearer, Marianne, that I was referring to ILADS researchers like Alan MacDonald,MD and Joseph Burrascano, MD.
Dr. MacDonald is a pathologist who spent many years researching LD after he got home from work, on his own time. He is now retired but continues to do research for us as he is able.
Dr. Burrascano is a founding member of ILADS who diagnosed and treated thousands of CLD patients over many years. He left his clinical practice to devote his energy full time to doing research to help Lyme patients.
Other readers would know more about these researchers and others like them.
Olive, i should have been more clear too. Dr. MacDonald has assisted in treatment of patients as much as research. Any Lyme doctor who treats patients is researching too. Dr. Burrascano has been through the mill by the medical Mafia. i am talking about new grads who want to live in a lab being supported by government and other grants all their life and never getting into the trenches treating patients. I am just another Lyme patient, forced to see Mafia medical providers who act like nothing is wrong, while the patient undergoes unending torture and having no life.