Kelly’s Story – One Girl’s Adverse Reactions to Gardasil

By Dana McFarland
April 24, 2009

Hello Everyone,

My daughter Kelly has gotten progressively worse. She was injected  (with  the Gardasil vaccination) 12/06, 2/07, and 6/07. She has had strep 3 times with a continually high aso titer over 1000. She has had several utis, uris, extremely elevated mono, parvo, and other virus titers. She tested positive for 2 bands on the lyme western blot and slight positive for babesia. She has a slow wound healing time. Since October we had been treating her for “lyme” but no response. I think we were going the wrong direction. This week she was diagnosed with Postural Orthostatic Tachycardia Syndrome POTS. Lying down her heart rate was 55. Standing up it jumped to over 120. Here is the symptoms: ( Sound Familar?)

Postural Orthostatic Tachycardia is a syndrome. As such, there is a collection of symptoms that distinguish it. The symptoms are widespread because the autonomic nervous system plays an extensive role in regulating functions throughout the body. Many of these symptoms, such as low blood pressure,* may present only after prolonged standing. Symptoms will vary from person to person. The following is a list of symptoms reported by patients. When possible, we have included the percentage of patients that research reports have experienced a given symptom.

Symptoms presumed to be related to cerebral hypoperfusion:**

Lightheadedness 77.6 % (Grubb, 2000)
Fainting or near fainting 60.5% of patients report near fainting (Grubb, 2000)
Generalized weakness 50% (Low et al.)

Symptoms presumed to be related to autonomic overactivity include the following:**

Palpitations 75% (Grubb, 2000)
Tremulousness 37.5% (Low, Opffer-Gehrking, Textor, Benarroch, Shen, Schondorf, Suarez & Rummans, 1995)
Shortness of breath 27.6 % (Grubb, 2000)
Chest discomfort and/or pain 24.3 % (Grubb, 2000)

Sudomotor symptoms include the following:**

Loss of sweating 5.3 % (Low et al.)
Excessive sweating 9.2 % (Robertson, 2000)
Loss of sweating and excessive sweating are more common in patients with elevated norepinephrine levels (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007).

Symptoms that may reflect dysautonomia:**

Delayed gastric emptying 23.7% of patients report gastrointestinal complaints, including bloating (Grubb et al., 1997)
Bloating after meals (Grubb et al., 1997)
Nausea 38.8% (Robertson, 2000)
Vomiting 8.6% (Thieben et al., 2007)
Abdominal pain 15.1% (Thieben et al., 2007)
Diarrhea 17.8% (Jacob & Biaggioni, 1999) (sometimes with alternating constipation)
Constipation 15.1% (Thieben et al., 2007)
Bladder dysfunction 9.2% (Thieben et al., 2007) (this may include Polyuria (Jacob & Biaggioni, 1999) (excessive urination)
Pupillary dysfunction 3.3% (Thieben et al., 2007) Pupillary dysfunction may or may not be responsible for some other reported symptoms, such as: Blurred Vision (Grubb, 2000) and Tunnel vision (Low et al.).

Generalized Complaint symptoms:**

Fatigue 48% (Grubb, 2000) (which can be disabling)
Sleep disorders 31.6% (Low et al.) (can cause unrefreshing sleep and an increased need for sleep)
Headache/migraine 27.6% (Grubb, 2000)
Myofascial pain 15.8% (Thieben et al., 2007) (characterized by regional muscle pain accompanied by trigger points)
Neuropathic pain 3% (Thieben et al., 2007)

Other symptoms reported in research that are not categorized above include:

Dizziness (Grubb, 2000)
Tachycardia (Grubb, 2000)
Exercise intolerance (Grubb, 2000)
Clamminess (Grubb, 2000)
Anxiety (Grubb, 2000)
Flushing (Grubb, 2000)
Postprandial hypotension (Grubb, 2000) (low blood pressure after meals)
Blood pooling in limbs (Grubb, 2000) (can make legs feel heavy and appear mottled and purple in color)
Intolerance to heat (Grubb & Karas, 1999)
Feeling cold all over (Grubb & Karas, 1999)
Low blood pressure upon standing (Grubb, Kosinski, Boehm & Kip, 1997) (Some physicians feel orthostatic hypotension is a separate entity from POTS)
Cognitive impairment (Grubb et al., 1997) (may include difficulties with concentration, brain fog, memory and/or word recall)
Narrowing of upright pulse pressure (Jacob & Biaggioni, 1999)
Cold hands (Low et al.) (and often feet & nose)
Hypovolemia (Low et al.) (low blood volume)
Chills (Low et al.)
High blood pressure (Low et al.)
Hyperventilation (Low et al.)
Numbness or tingling sensations (Low et al.)
Reduced pulse pressure upon standing (Low et al.)
Low back pain (Mathias, 2000)
Aching neck and shoulders (Mathias, 2000)
Noise sensitivity (Stewart, 2001)
Light Sensitivity (Stewart, 2001)
Disequalibrium (Sandroni, Opfer-Gehrking, McPhee & Low, 1999)

The above are symptoms reported by POTS researchers. Other symptoms sometimes reported by POTS patients include:

Arrhythmias (irregular heart beats)
Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications – may only need small doses)
Easily over-stimulated
Feeling full quickly
Feeling “wired”
Food allergies/sensitivities (some foods seem to make symptoms worse)
Hyperreflexia
Irregular menstrual cycles
Loss of appetite
Loss of sex drive
Muscle aches and/or joint pains
Swollen nodules/lymph nodes
Polydipsia (excessive thirst)
Weight loss or gain
Feeling detached from surroundings
Restless leg syndrome

POTS symptoms can vary from day to day. They tend to multiply and become exaggerated upon upright posture. Blood flow and blood pressure regulation are also abnormal while supine or sitting, but these abnormalities may not be as apparent and may require orthostatic stress to become evident (Stewart & Erickson, 2002). Some patients do report symptoms occurring while sitting or lying down. Heat, exercise and eating can exacerbate symptoms. Women sometimes report an increase in symptoms around menstruation.

If you are suffering from some of the above symptoms, you need to seek professional help. Please do not attempt self-diagnosis.

*Some of the above symptoms are specifically related to orthostatic hypotension, traditionally defined as an excessive fall in BP (typically > 20/10 mm Hg) on assuming the upright posture. Not all patients will experience a drop in blood pressure upon standing. Some physicians define orthostatic hypotension as a separate entity from POTS.

If you look on the website http://www.dinet.org/ there is a ton of good info. For us, especially is the section about causes. We are now in the process of reinvestigating all the possible causes. Many can be treated. There is a possibility of an autoimmune process, although Kelly’s ana titers have been normal. There is a good section on there about what to do to help.

Her primary doctor is going to check for all possible causes listed on that website (at least she said she would..) If you delve into the causes, there is alot of out of the normal testing that needs to be done. Also we are working with Dr. Abdullah at the children’s heart institute outside of DC to manage her symptoms- he is fantastic and very sweet. He doesn’t delve into the causing condition, only treating symptoms.

Finally, last week, I contacted the NIH with Kelly’s story, so hopefully they can help. I told them a lot of girls across the counrty are experiencing the same thing. Maybe we can group together and they can help all of us.

There is power in numbers!

Dana

Comment from Leslie

Before I posted this story about Kelly, I emailed Dana to get her permission.  This is the response that I received:

Hi Leslie,

Yes, please.  I would love for Kelly’s story to get out as much as possible.  Maybe someone could help her.  And also to warn others about gardasil and how it is hurting so many girls. 

I was reading online last night on the mayo clinic website about POTS and the head of the clinic, Dr. Phil Fisher, stated in the comments section that no one ever has all the possible symptoms of POTS.  Kelly does.  And I am positve other gardasil girls do also, or may develop into it.  She had her shots finished almost 2 years ago, and she keeps getting worse.

Anyhow, thank you so much for taking interest and helping with this issue that is becoming a silent international crisis for young girls.  I think people are slowly waking up with the CDC re-looking at gardasil.  Maybe soon it will get pulled and these girls will get the attention and healthcare they deserve.

Thanks again,

Dana

PG

Author: Leslie Carol Botha

Author, publisher, radio talk show host and internationally recognized expert on women's hormone cycles. Social/political activist on Gardasil the HPV vaccine for adolescent girls. Co-author of "Understanding Your Mood, Mind and Hormone Cycle." Honorary advisory board member for the Foundation for the Study of Cycles and member of the Society for Menstrual Cycle Research.

Comments

  1. bernadette higgins says:

    My 18 year old daughter was diagnosed 2 weeks ago with POTS. She has been suffering for 7 months now and I always thought it was brought on by her first HPV vaccination. She recieved her first shot in Jan. and a week and a half later fainted for the first time. More symptoms shortly followed. She was in great physical shape but soon after the fainting episode was unable to walk up our stairs at home, resorting to crawling or avoiding them completely. I have searched endlessly online for answers and am thankful to find your story. I always mentioned the vaccination to all the specialists she has seen but they never seemed to think there was a tie until we saw a neurologist that specializes in Dysautonomia that we were told there may be a connection. Thank you so much for sharing!

  2. Bernadette – I am glad that you found my blog. Your instincts are right and there is a connection between the Gardasil vaccine and the symptoms that your daughter is experiencing. Keep searching for information – it is out there. I am glad that a neurologist is finally listening. There are many mothers who are using a whole foods – diet to help with their girl’s recovery. If you go to the Gardasil board on yahoo.com “Lets_talk_about_Gardasil@yahoo.com” you will find many mothers who are sharing information about what their daughters are going through. It is a great resource. Another resource is http://womenhurtbymedicine.wordpress.com. There are many mother’s stories about this vaccine and the damage that it has done. Please stay in touch – so that we can offer support with your daughter.

  3. Mt daughter suffered extreme adverse reactions following the2nd shot of Gardasil in May 2009. We have provided a detailed summary of issues here
    http://www.gardasilactiongroup.blogspot.com/

    Last night 2nd September she was diagnosed with POTS Syndrome!

    Prior to Gardasil our daughter had been occasionaly unwell and suffered respiratory issues and last year was diagnosed as having had Glandular Fever and Epsten Barr.

    Was Gardasil the trigger for what has occured – its hard to believe it was’nt.

    IAM VERY HAPPY TO SHARE MY EMAIL.

  4. Stephen thank you for sharing your daughter’s story. There is no doubt that Gardasil was the cause of your daughter’s immunological problems. Keep posting to sites and getting your story out there….there are way too many people who are still unaware of the dangers of this vaccine. There is a Gardasil board of parent’s at Lets_Talk_About_Gardasil@yahoogroups.com. You may find this to be a great resource for more information and support from other parents going through the same thing. Many girls are finding success with stemming the side effects from going to chiropractors who work with them on detoxing the body. Many girls are on organic and gluten free diets. It is very sad that your daughter already had immunological problems and the vaccine was given anyway. It should never had been administered under those conditions. It is not rocket science – only common sense – something that our doctor’s seem to have lost along the way. Stay in touch and keep us posted on her condition.

  5. Terri Goodman says:

    Angel was given the first injection on July 31,2009 and 3 weeks later was complaining of chest pain, shortness of breath and severe headaches and heartburn. It has been a very long month and she has missed two weeks of school. She has had a severe headache for two weeks and now complains of numbness in her toes and fingers. I could say she sleeps a lot but she is not really not sleeping well. The headache keeps her from getting any real rest. They are attempting to test for everything, but do not want to talk about the Gardasil. I am attempting to de-tox her with herbals.

  6. Hello, Terri – you need to get into the network of Gardasil mothers whose daughters have been injured by the vaccine. They have all dealt with doctors who do not want to acknowledge that these girls have been injured by the HPV vaccine. Unfortunately, the numbers of injured girls are growing. As far as detoxing your daughter with herbals – well that may or may not work. I would suggest seeing a chiropractor who is into detox and have her get under his care. Many of the girls have switched to organic diets – some even gluten free with good results. If your daughter is having headaches and tingling in her extremities she needs to be under someone’s care. And if a traditional doctor does not work then seek an alternative. Many girls are suffering from neurological problems and ongoing severe headaches are not something that should be disregarded. Chances are the traditional tests are not going to pick up what is going on with her.

    Please join the Gardasil group at Lets_Talk_About_Gardasil@yahoogroups.com. This is where many mothers are sharing information and offering support for each others experiences. They Gardasil Mom’s have just been asked to post their stories to another blog site that is called injuryboard.com An attorney has opened the door for them to blog their concerns and information on a site that is read by thousands of people daily. This is what is needed so that you can all get exposure for what is going on with your daughters. Please, please seek out medical care for you daughter from a doctor/chiropractor who is willing to acknowledge that she may by suffering neurological damage from the vaccine. Do not let the headaches go on unsupervised. In an FDA closing statement on Merck and Gardasil issued last year….it was stated that a large percentage of girls (I forget the exact percentage – but it is significant) will present what they call “a new medical condition” within the first year of getting the vaccine. This is why traditional doctors are struggling with what is going on. Chiropractors are more into looking at the whole body and the detox process which should be done under supervision. Chiropractors who are a part of the Maximized Living Network and really into understanding this. Many girls have made remarkable recoveries under their care. You can go the the MLN web site and find a chiropractor in your are who is a part of this organization. If not, contact Dr. Joe Arvay in Denver, CO. His email is info@spinegeek.com. he is really helping Ashleigh Ryburn who suffered severely from adverse reactions…including numerous seizures etc. He can direct you to a chiro in your area – or work with you long distance too.

    Please stay in touch with us and let us know how your daughter is doing. Your will find a lot of support at the Gardasil group on Yahoo.

    I am sorry that you and your daughter are suffering through this. We will help you any way that we can.

    Leslie

  7. Terri Goodman says:

    Thanks for the support and info…I am just now getting this because the doctor put Angel in the hospital on Monday the 28th and tried some serious IV migraine medication that did not work and in fact made it worse. We came home Thursday evening after three different medications did not work. Valproicacid, Toradol and the last was DHE. Toradol was the only pain med-the others are preventatives…we came home with Depakote, but quite frankly I am not sure I want her to take it. It is also a preventative…and I don’t think I understand trying to prevent something that has not gone away for more than a month. She tried to go to school this morning, but was exhausted after an hour and a half-we went home. She is starting her fourth week of missed school and that also concerns me. This is very scary…Thank God she only had one shot…. Terri

  8. christiann says:

    I am really worried. Just found out that my daughter will be taking my 11 yr old granddaughter for her 2nd gardasil inj. tomorrow. and I never knew she had her first. One of my co-workers’ daughter’s suffers from POTS (she, too, had 1 Gardasil; inj. several years ago) and is really, really suffering. I am so scared for my daughter and granddaughter. And of course it is not my decision to make. I told my daughter that it’s not a good idea, but what else can I say.

  9. I understand your concern and predicament over the HPV vaccine. It is very hard to see your daughter continue the series when you know of too many who have suffered adverse reactions. Hopefully, your granddaughter will be one of the lucky girls who have not been injured. If she does become injured, Goddess forbid, then contact me and I will get you involved with a support network of mothers who have been working together to find cures.

  10. melissa nuschke says:

    Hello there-my 16 yr old daughter has developed POTS syndrome and it is dawning on me that it came out of the blue…fairly soon after receiving the first of the three injections of the hpv vaccine. I feel sickabout it, – I hoped desperately that my suspicions were wrong…Then I “googled” her diagnosis and the hpv vaccine and..well, you know the rest. I am just Please advise how I can join your group, stay informed, etc.-Hoping this group still exists…
    Melissa

    Thanks,

    Melissa

  11. Hello, Melissa – Yes, we know the rest of this story and have been desperately trying to educate as many women as possible about the potential dangers of the Gardasil vaccine.
    There are two very active groups on the HPV vaccines and I have been involved with both of them. One is Truth About Gardasil – http://truthaboutgardasil.org and the other group is SANE Vax Inc. http://sanevax.org. Both groups have support groups for parents and daughters. Many of those groups are on Facebook if you are active there. The parents offer support as to what treatments are working for their daughters.

    I know you feel sick about this – and my heart goes out to you. Parents believe they were doing the best thing for their daughter by getting her vaccinated…. and in the end the side effects from the vaccine are worse than the risk of getting cervical cancer. Check back here often too. I also post a lot of information on Gardasil and Cervarix.

    I am glad you reached out – both organizations will offer you and your family great help and support.

    Leslie

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