Lyme Program Aftercare

Aftercare is an important part of our treatment program. The Infusio team does its best to provide you with as much information and follow up care as possible. In order to facilitate this process and to avoid frustration and misconceptions over what after care is included in the Lyme Program we would like to outline what we offer, what communication channels to use, and where the limitations of our aftercare are. Most importantly, the Infusio doctors cannot function as your primary care physician. You will need to continue your care with your local physician.

While we try to do all we can, it is important to recognize that there are limitations. Many of these are set by the local laws or the rules which define safe practice – all of which, we have to adhere to. These can be different, depending on which country your treatment center is located in.

It is also important to understand that it is impossible for any doctor or medical center to provide limitless access to staff and/or resources. That having been said, it is not always possible to draw a clear line as to where things stop and where they start. Some things have to be open to the discretion of the medical team. In the world of open communication and social media, providing individualized patient care in different countries poses certain challenges. Also, each patient situation is different and may need to addressed individually.

Comparing experiences, treatments, and suggestions made by our doctors on social media, can lead to confusion and does not always take into consideration the individual circumstances and possible legalities under which that doctor is working. The following information will outline what the Infusio offices can do, and how you can help us provide you with the best possible aftercare.

Communication With Infusio

In order to provide you with as much information and follow up care as possible, we’ve created several channels for you to use:

Weekly Follow Up Call

Patients are entitled to one follow up appointment with a team member each week for twelve weeks after cell therapy treatment. Patients will schedule these appointments themselves through our patient portal.

Reminder: This is not a doctor’s appointment. It will enable you to speak with a team member familiar with the post cell therapy developments. This appointment is to provide you with information to support you through the home program. They will direct any medical questions to the medical team or may ask you to send your question through another channel.

Examples of questions to be asked here:

Is it normal to still be sore a week after my SVF procedure?
Can you please remind me of what I need to do during the home program?
Can I exercise during the healing phase?

Ask Infusio Facebook Group

This is a channel to ask and receive accurate Infusio information from our Medical Team.

Ask Infusio is not for medical emergencies. Patients may direct general questions to this group. Please do not write individual questions e.g. regarding your personal medication dosage to this group. These questions will not be answered. Please be patient with response time. Our medical team responds several times a week.

Examples of questions to be asked here:

Is it normal to feel tired two weeks after cell therapy?
Why am I having mast cells reactions?
How long does can neurological healing take?
How can a histamine scavenger can help me?

Phone the Front Desk

This channel is for urgent questions but not medical emergencies. The front desk is only available during office hours. If someone does not pick up, please leave a detailed message and someone will get back to you with the information you are requesting.
Reminder: The front desk staff are not doctors but they can reach the medical team very quickly to provide you with an answer.

Examples of questions to be asked here:

My doctor prescribed this antibiotic for my sinus infection, is this ok for me to take after cell therapy?
Can I please order a histamine scavenger and KPU support?
Can I please book a telephone consultation with the doctor?

Infusio Exchange

This Facebook Group is a general information and exchange portal. Any question you pose here will be answered by someone from the group. This is a safe space for past, present, and future patients to exchange experiences and encouragement. All members and posts must be approved by our staff in order to assure safety and support for the group.

No posts are simply deleted or not posted. If the social media team think your post does not fall within the rules or is inappropriate, they will contact you personally.

Examples of questions to be asked here:

Does anyone know of a good LLMD close to my home?
What is a good vitamin brand to use? What non-toxic insect repellents do you recommend?
How long did it take you to feel better?

Genetics@infusio.org

Please send your genetic test results to this email. These will be looked at by the medical team and used as a basis for any suggestions made for the home program. The team will suggest up to three products. This is not a consultation but a review.
If you wish a genetic consultation, there will be a charge.

Please note: there are limited appointments for a consultation and waiting times can be long.

Questions@infusio.org

After completing one of the Infusio programs, please use this email address to address our medical team. This is not a direct line to one of the doctors nor is it an emergency hotline.

You may ask questions related to your follow up. Occasionally you may be asked to schedule a consultation. This consultation may incur a charge. This email channel is not supposed to develop into a continual dialogue with the medical team. In this case, you will be asked to schedule a consultation.

Please respect the fact that the medical team cannot answer questions not related to your cell therapy nor can they speculate as far as symptoms are concerned. The medical team is familiar with common symptoms and or complications which may occur. Outside of this, they are required to refer you to your primary care physician.

Response Time

Questions sent to questions@infusio will be answered in a timely manner (within 48 hours of them being read by a team member). The emails are checked every working day except Fridays. Once the email has been read, many are replied to by the end of the day (remember the time difference from where you are compared to Germany of California). In most cases during the week, the outside limit for us replying to an email is 48.

In order to let you know that your email has not disappeared into cyberspace, you will receive and automated reply. This does not mean your email has been read, but that it has been received. The automated reply contains a few reminders at to what the questions@infusio can be used for and a reminder to contact your local emergency care facility in emergencies.

Examples of questions to be asked here:

Can you recommend something to help me sleep?
I have some bruising after my procedure, is this normal?
I am 7 months post SVF and not feeling good, what can I do?

Questions to Direct to Your PCP or LLMD

Infusio can only answer questions related to your treatment with Infusio. Below are a few examples of when to contact you local doctor rather than Infusio:

Prescriptions

Changes to any prescription medication other doctors have prescribed must be directed towards them. We may, at time suggest changing a dose, but we will always refer you to the prescribing doctor to do this. The same applies to prescription refills. Sometime, our Infusio Doctor may prescribe a drug for you. In this case, please contact us for help.

New Symptoms

If new symptoms develop, please see your local doctor. You can also contact questions@infusio to ask if we are familiar with this occurring but, to be safe, a local doctor will have to examine you in order to determine that you are not developing an unrelated problem (e.g. abdominal discomfort may be normal after a cell therapy inject to the gut, but this could also be a completely unrelated appendicitis. We can’t determine this from afar).

Emotional Distress

If you are suffering from emotional distress, it is important for you to coordinate your care through your local physician, neurologist or therapist. We can let you know if we consider this to be ‘normal’ or part of healing, but care has to be provided locally.

Speculative Questions

We cannot answer speculative questions e.g. Since having SVF, I have a strange feeling in my abdomen. Could this be parasites? Please contact your local doctor as the answer to ‘could this be…’ can go either way. Only someone who can actually see/examine can put this question into perspective.

General Non-Related Questions

Another question we cannot answer is ‘what can I take for…?’ Unless this is directly related to your treatment with us. ‘What can I take for discomfort after my SVF procedure?’ is something we can answer. What can I take for indigestion, athlete’s foot or muscle cramps at night are questions which, should be directed to your local doctor. Yes, in theory, we can make some suggestions, but these issues are outside of the scope of our treatment and are not covered by the program fee.

Known Medical Conditions

If you are experiencing symptoms you are familiar with such as Renaud’s Syndrome, hypothyroidism, UTI, PCOS, dermatitis etc., please continue care and treatment through your local physician. Even the continued management of your known Lyme symptoms should be performed by your local LLMD or PCP. We are happy to work closely with them to provide any knowledge or information he or she may need. In this case, the doctors would communicate directly with each other.

Questions We Cannot Answer

There are a set of questions, which we simply cannot answer. Sometimes this has to do with correct medical practice and other times it is simply because we do not know. Here are some examples:

Questions for Third Parties

The main group of questions we cannot answer are third party questions. E.g. My friend came for SVF three weeks ago and he is not feeling so good, what can he take to help? Our team will always need to hear directly from the patient and will only communicate with the actual patient. Of course, we will work with parents of minors and communicate through them.

Shotgun Method

We cannot answer questions which have been blanket posted on all of our channels. There has been a trend of posting questions everywhere or sending the same question to both of our centers and comparing answers. Phil, Dr. Kim, and Dr. Bijan work together. We also share questions we are being asked and we regularly talk about ways to help our patients. When we see the same patient working with each of us separately and secretly, we feel as if we are being pit against each other. Honestly, this is not good for your care and it seriously dampens our motivation. For this reason, we have consolidated the Germany and US channels and we will delete repeated questions from the same person through different channels.

Consultations with Phil

All consultations are performed through the medical teams (Beverly Hills and Germany). Please understand while Phil is a part of the medical team, he is not available for individual consultations. It is sometimes possible for him to join in a consultation for a few minutes if his schedule allows, but it is not possible to specifically schedule this. Phil is actively involved in the planning and individualization of treatments and has open communication with the Infusio docs. Please respect that they take the lead in patient care.

Emergencies

It is not possible for us to handle true emergencies via email or telephone. These have to be assessed locally though your primary care physician, your local LL(N/M)D or at your local urgent care facility.

If you have an emergency situation, it is always best to seek emergency care locally. If the local doctor runs his tests and finds nothing at all to explain your symptoms, then maybe it is good to contact the Infusio Medical Team. In this case, call the front desk during business hours. You may also write to questions@infusio but remember it can take up to 48 hours from the team reading your email to send a reply.

Important Points to Remember

Our program does not include unlimited 24/7 access to a doctor.
Questions@infusio is not a direct email line to our doctors. It is shared by the medical team.
You are responsible for scheduling your own follow up calls. This call is to ‘touch base’ with an Infusio employee, not a medical consultation.
Unlimited consultations with an Infusio doctor are not included in the program price. Only the follow up consultation after 4 months is included in this price.
Writing to questions@infusio is to provide answers to individual questions. If the question cannot be answered directly or within a few sentences, the doctor may conclude you need to book and appointment for a phone consultation. There may be a charge for this.
Questions@infusio is not meant to provide a continued dialogue with the medical team.
Our team cannot replace your local primary care physician.
We cannot fill prescriptions for medication not prescribed by one of our doctors.
If you live outside of the country (often the case for Patients visiting Infusio Frankfurt), it is not possible for us to send you medication or supplements, nor can the doctor write you a prescription for medication.
We can only answer questions directly related to your treatment with us.

Plan of Action

In an emergency situation, please call 911 or go to your nearest emergency care facility. Do not wait not hear back from Infusio.
Use the correct channels to obtain information. None of our channels are for emergency care.
Always schedule you weekly follow up phone calls.
Call the front desk during local office hours for urgent, non-emergency information. Please stay on the line and follow the spoken direction.
If the front desk staff cannot take you call, please always leave a message outlining how we can help you.
Direct personal medical questions related to your treatment to questions@infusio. Remember, it can take around 48 hours for a reply.
Direct general questions to the Ask Infusio Facebook group.
Send your genetic information to genetics@infusio.org
Direct your nutritional questions to nutritionist@infusio.org
Use the Infusio Exchange group prudently to exchange information with fellow Lyme patients.
Follow updates and announcements on our website and social media.
Have a local support group, including friends, family, therapist, primary care physician, LLMD.
If, for some reason, you do not hear from us, please give us the benefit of the doubt and contact us again or write a post on Ask Infusio.