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Posted 4/24/2015 3:26 PM (GMT 0)
After almost ten appointments over 3 days at the Cleveland clinic I was diagnosed with a chronic pain disease,pots,low iron,low vitamin d, & after a gastro follow up most likely ibs. every doctor there dismissed the positive lyme titer & reactive kd23 igm band. They all insisted chronic lyme disease does not exist As somewhat expected. they gave me a perception to their intensive month long chronic pain 8 hour a day for an entire month program. ideally I would have to stay in Cleveland for one month & do the program Every day like a job. Ideally I would like to do it through may & go to the llmd appointment I already have scheduled in june. What do you think?
Posted 4/24/2015 3:35 PM (GMT 0)
Personally, I think it would be better to save your money to use for your Lyme treatment. You could use the time to ramp up your detox program (which would address your pain issue), start some herbal treatment (Buhner or Cowden protocol), and take up yoga and meditation. That would go a long way to helping you get better, rather than just learning to deal with way you are.
Posted 4/24/2015 3:38 PM (GMT 0)
This makes me so freaking mad. You clearly have indicators for Lyme, yet they don't understand the disease well enough to just admit they don't know how to treat it, so they dismiss it and blame it on chronic pain disease. I'm with AG, I would start seeing an LLMD and start detoxing.
Posted 4/24/2015 3:45 PM (GMT 0)
This is the number 4 hospital in the country. I was thinking if I could do the program it would help me cope with the debilitating horrible chronic pain while I was waiting for the llmd appointment. I can't do most herbal products or magnesium because it effects my coumadin. The visit also confirmed there is nothing else they could find causing my pain. I went to endocrinology,cardiology,neurology,neuro opthamology,chronic pain,& internal medicine.
Posted 4/24/2015 4:14 PM (GMT 0)
No other opinion?
Posted 4/24/2015 4:22 PM (GMT 0)
I have 14 days of doxycycline I haven't started but I believe doing it would just make the bacteria more resistant to treatment in the long run.
Posted 4/24/2015 4:39 PM (GMT 0)
Starlette,

I'm sure you know that chronic pain is just a general diagnosis with no explanation as to what is causing your pain, similar to fibromyalgia. I'm not certain, but I think POTS may be a similar diagnosis. It does not look like they have been able to get to the bottom of what is causing your pain and symptoms.

They refuse to accept the only positive blood test / indicators that Lyme (and co-infections) could be causing all your issues. Low Vitamin D can cause some issues, but this could likely be intertwined with Lyme, which sucks up Vit D and Magnesium.

I have heard so many stories about well-renowned hospitals failing to figure out the cause when it involves Lyme. This seems like the case here. They are clearly not going to help you address the root of the problem. It seems like they are only willing and able to manage your symptoms / pain.

Is there any way that they can help you manage your symptoms / pain with at home treatment until you can get in to see an LLMD? I can only imagine that they will charge a lot of money for this program. If they can help you save a lot and manage your symptoms at home, that might be a good approach.

I really do think that an LLMD is your best bet. All the other tests have not gotten you any answers. I do want you to get better! I don't want you to be miserable and scared in the meantime. Do you think that they can help you for less money with at home symptoms management?
Posted 4/24/2015 4:49 PM (GMT 0)
I think you are wasting your money and time. I went to 2 of the best pediatric hospitals in the country and all the docs dismissed Bart and Lyme as the causes of my son's issues. I think you have Lyme but is not your main problem. I think you have something else on top of Lyme that is making Lyme a nr 2 disease. Certainly you can swallow some pain meds. You will probably feel better but remember that the infections are not "cured" with pain meds.

I think being so over emotional Barto is your main problem. Did you test for Bart through igenex? Based on your symptoms that is what I think. Infections are competing with each other and one is the top infection. My son tested positive for Bart and almost positive for Lyme. His main problem is barto but Lyme is also contributes to it. He is being treated for both Lyme and barto.

I would take the doxy if I were you and order some herbs. That way you will still be covered after the 2 weeks, until your LLMD appointment. So that's just my opinion, I could be wrong of course.
Posted 4/24/2015 5:11 PM (GMT 0)
it was a specific pain disease name. Systematic exertion intolerance disease. Although rhemetology did say Fibromyalga. Cardiology said pots or inappropriate sinus tachycardia. Cardiology wants to review my previous testing but I've had inappropriate sinus tachycardia diagnosed before when this all started.
Posted 4/24/2015 5:28 PM (GMT 0)
Systemic exertion intolerance disease is a new name for chronic fatigue syndrome (nothing more, nothing less). I prefer the name and found it fit me well because a consistent symptom for me is inability to tolerate any sustained activity--physical or mental. The next doctor I saw , a physiatrist, added fibromyalgia to my diagnosis.

Like you, I am trying to sort out the role of Lyme and other tick borne infections. While no one would choose to have these infections, I'd prefer to Identify and treat the underlying cause of my symptoms, even if it is the dreaded Lyme disease.

Starlette89, I'd highly recommend a book by dr Richard horawitz, called Why can't I get better? Dr horawitz has a Lyme symptom questionnaire that is available online (as well as in his book).
Posted 4/24/2015 5:30 PM (GMT 0)
I haven't gone through igenex I was mistaken before but I was tested for lyme & Co infections through quest. I have to wait for the llmd appointment in june to do the igenex retesting. my coumadin was high when tested yesterday & taking the doxycycline will thin my blood even further so I think I have to wait even longer. Probably until my appointment. =( I think my only option is to suffer,try to control it with pain meds,maybe do some of the chronic pain program,& try to make it until the june appointment. I mean that hospital is the best hospital next to the mayoclinic. Number 1 in several departments.
Posted 4/24/2015 5:45 PM (GMT 0)
Starlette,

Any doctor can sign off on the IGENEX order. You just have to find a doc willing to do it. You have to get your blood drawn early in the week, Monday through Wednesday, and overnight your blood with the included Fed Ex label (included with the price of the test). You can get the Lyme IGG and IGM for about $200. You can call and order the kit for no charge at 800.832.3200.

I was not knocking the Cleveland Clinic, Mayo or any other hospitals. It is just that the docs are not adequately trained in Lyme Disease and co-infections.

I was diagnosed about 17 years ago with bilateral costochondritis, which caused me very severe rib and chest pain. It is a general diagnosis with no known cause. I could only manage the symptoms. I wish I had known then that it was related to Bartonella so that I could treat the disease and not just manage the symptoms. I would probably not be in this mess now where my symptoms are much worse and more extensive.

I want you to get the treatment you need, not just manage your pain and symptoms. I also don't want you to waste your money. A lot if us struggle with the costs. It does not make sense to spend a ton if you can do the same thing for less at home. It is up to you. I don't know what all they can do for you at the clinic. You need to weigh the pros and cons and make a decision. I'm just trying to help you make an informed decision. What can they do for you to help you above and beyond what you can do at home? Is it worth it?

Keep us posted. You're doing great! :)
Posted 4/24/2015 5:48 PM (GMT 0)
Starlette, I still don't understand why you are going to doctors who are not Lyme literate.

"Cardiology said pots or inappropriate sinus tachycardia. "

This can be caused by Lyme.
Posted 4/24/2015 9:02 PM (GMT 0)
I didnt say you were knocking it dear. There is no way I'm going to be able to convince my dad to pay 200 more dollars for the igenex testing until the doctor is the one telling him to do so. The clinic is a comprehensive chronic pain clinic they have water physical therapy,cognitive therapy,classes on doing things in a way that will minimize pain,& coping techniques. I'm sure there's other stuff I don't know about as well.
Posted 4/24/2015 9:04 PM (GMT 0)
I did a general work up with every department to rule everything else out & possibly one of the doctors would maybe know about lyme. Although they didn't. I have a lyme appointment in june.
Posted 4/24/2015 9:09 PM (GMT 0)
June will come more quickly than you think. Focus on working on preparing for the visit -- it really is your best approach. Your family will respect you when they see you making an effort to make your situation better. If you go to the Cleveland clinic you will be surrounded by people who will try to tell you to just accept being sick. Don't settle, please.
Posted 4/24/2015 9:13 PM (GMT 0)
I may try a few days of the pain program just to learn some coping techniques if anything because I'm not doing that very well & I'm alone.
Posted 4/24/2015 9:15 PM (GMT 0)
The pain clinic might not be a bad idea...if you have the time and the money. If pain is one of your troubling symptoms...as long as they don't convince you during that time that you don't have lyme.


Isn't it ridiculous that these so -called intelligent people we call Doctors - think it's a sound diagnosis...when the person has 4 or more separate things wrong with them...rather than even considering maybe it's one thing causing all these issues?
fibromyalgia, pots, exertion intolerance disease, ibs.


I'm glad you're keeping your LLMD appt.

Keep us posted.
Posted 4/24/2015 9:27 PM (GMT 0)
Ty girlie. Can everyone please let me know about their twitching vibrating symptoms on my new post Please. Mine in my fingers is starting to scare me today ty.
Posted 4/24/2015 9:41 PM (GMT 0)
Starlette89, I don't know how long you've been sick, but I too would advise you to see a LLMD asap. June is not soon enough! Be pushy, be willing to travel far, call in favors, do whatever it takes to get an appt soon.

Are you aware that the more time that goes by that Lyme is untreated, the harder it is to get rid of it? Not to mention the fact that as any chronic illness progresses, other bodily systems start to break down. Then the root cause becomes harder to pin down.

Horawitz calls this MSIDS, or Multiple Systemic Infectious Disease Syndrome. Google it. This way of viewing my own illness has been very helpful.

I'm assuming you were born in 1989. If that's true, you should be able to fully engage in a healthy active life, NOT making plans to cope with chronic pain of an unknown origin!

Rereading this thread, I see many others are giving you the same advice. You posted here for a reason.

My heart goes out to you, starlette89!
Posted 4/24/2015 9:54 PM (GMT 0)
I have been sick for 9 months. I have almost completely exhausted my resources. I have no choice but to wait until june =, ( now I'm really upset because I really have no choice But to wait. I keep asking for a sooner appointment.
Posted 4/24/2015 10:07 PM (GMT 0)
Starlette- so sorry you are dealing with all this. I am in agreement with all the other great advice you have received so far.

What I would suggest doing between now and June is read everything you can get your hands on regarding Lyme and your symptoms. Google is your friend! :) There are countless great resources out there. Knowledge is power! You need to be your greatest advocate.

I had about 6 weeks to research between my diagnosis and my first LLMD appointment. This allowed me to have a basic understanding of lyme and co-infections, symptoms (and their causes), which antibiotics, herbs, vitamins, and supplements were helpful and how long they should be taken, dietary changes, detoxing, etc. Had I walked into LLMDs office without any of that, I would have been so overwhelmed and would have forgotten what he said to me and I would not have known which questions to ask the expert!

My memory and cognition was definitely impacted by lyme, so I had to read and re-read quite a bit, keep a journal, and begin a spreadsheet just to keep everything straight. But it has been a lifesaver. And just think, in just a few days of research, you will probably understand 100x more about lyme & co than the average MD out there ;)

Good luck to you Starlette. Please continue to use this forum for helpful info. I can attest it has been priceless for me.
Posted 4/24/2015 10:34 PM (GMT 0)
Sorry if I upset you. Yes waiting sux!! If you have an appt with a good LLMD in June, then s/he will be worth the wait.

Feel free to email me and I'd be glad to talk on phone. Hang in there!!
Posted 4/24/2015 10:40 PM (GMT 0)
Ty all. I have researched quite a bit already. I have to wait. I really have no choice.
Posted 4/24/2015 10:49 PM (GMT 0)
Starlette-we all understand your frustration. We have walked in your shoes.

I can tell you from personal experience that the pain clinic may make you fell better but the results will be short lived.
Prior to getting Lyme I was diagnosed with degenerative spinal issues. It took my PCP 10 years to figure out that my migraines were caused by my neck being crushed. My head had been supported by my back for what the Dr's assume was at least a dozen years. It wasn't until after my first cervical fusion at 47? that they discovered that my lumbar spine was also severely damaged but if they operated on that they feared my neck would collapse. The muscles in my shoulder and back are hard as rocks. I made progress with an amazing physical therapist until I got Lyme.

Your body is in fight mode. It's similar to fight or flight response. Until you treat the cause, (remember that the eradication process does make you sicker, which will in turn create more tension, pain and tightness in your body) you won't make true progress.
Technically what your body is doing is called guarding. We raise our shoulders. We don't breathe as well. It's even difficult to relax our bladders when we are feeling our worst.
Focus on treating the cause. When you are on the road to recovery you can start working on the pain.

A lot of pain treatment involves steroids as they reduce inflammation. They suppress your immune system. They are the worst thing possible for someone with Lyme.

I think we all understand you want help now to feel better. Treating Lyme isn't cheap. Spend the money you will have available to fight the cause of your issues. Ice packs and heating pads will help for now. It's not much, I know but June will come soon.
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