I wrote this article as a Word document and attempted to cut and paste it to this forum's word processor. That move corrupted the original spacing and formatting. I was able to edit some of the spacing, but the formatting was impossible to correct. I apologize for the unappealing result.
I am making this lengthy post because I want to continue to provide relevant information that may be useful to others on their own Lyme journey. Heather continues to enjoy a symptom-free and increasingly healthy life for almost 3.5 years. There has been a recent development in her journey, and I want to express an understanding of its significance in the proper context as her doctors and I see it. I want to stress up front that Heather has NOT had a relapse of any symptoms of any illness!
We recently took Heather for a short healthcare “tuneup” by Dr. J. at the Hansa Center before she reported to college. This is the “Biological Medicine” physician that healed Heather’s illness. We also recently took her to an LLMD that is quite knowledgeable and competent as an integrative physician. We were seeking his services to do a physical and to conduct a comprehensive work-up of blood tests. Both physician’s testing found Heather to test positive for Borrelia, although she has no symptoms.
There have been many new members recently who don’t know Heather’s story. I will provide a review of her past, and then give attention to the recent development. I am providing this information to stimulate a discussion concerning how to best understand the real issues. Also how are we to understand the role that various tests play in defining the illness? This is just one person experiencing her own unique journey, but perhaps someone may someday benefit from this information. Anyone conducting thorough research will have another perspective to consider before making important decisions.
The Journey, Pre-Treatment
Heather found an engorged tick in her armpit at 8 y.o. . We (her parents) were completely ignorant as to the reality of the symptoms that she would soon begin to experience- that they were associated with Lyme Disease and co-infections. Unfortunately 2 pediatricians were just as ignorant. They said that she was depressed, looking for attention, and that she needed a psychiatrist. She had an Elisa test that was negative for Borrelia, but her EBV test showed a very high titer for infection.
Symptoms started to appear almost immediately, but were mild and slowly grew progressively worse. She totally crashed about
4 years after the tick bite. My hunch is that she accumulated several tick and mosquito bites during those 4 years that collectively made her very sick. I strongly doubt that the totality of her illness can be attributed to one tick bite. Heather had Assyra testing performed a few months prior to her crash. The test showed that she had Borrelia, and it was ranked #1 as to importance. The test also showed Babesia Duncani. The ND/DC that did the test admitted that he knew nothing about
lyme, but that many people are carrying the organism, yet do not manifest any symptoms.
I feel that there were several factors that made Heather a likely candidate for succumbing to the illness. First, she had a terrible diet. Heather preferred to eat things like pizza and macaroni and cheese. My loving wife accommodated this terrible diet, although the rest of the family ate healthy food. Also, Heather didn’t get enough sleep because she was a conscientious student that always did her homework, although she was always involved in a sport, and sometimes 2 at a time!
The Journey, The First Treatment With the First Doctor
We were able to secure the services of an LLMD who was mentored by Dr. Joseph Burrascano. Heather’s treatment started over 4 years after we saw the embedded and engorged adult tick. She was diagnosed with Borrelia, Basesia Duncani, and Bartonella at this point in the journey. She took adult doses of 3 different ABX at the same time (13 y.o.). She was very sick and got to the point where she could not walk. She also had severe pain, fatigue, neurological issues, and many other symptoms. Her entire body seems to have been affected. Her RBC and WBC were out of range low. We found out that she was very allergic to dairy and glutens. Her liver was in terrible shape and became worse with ABX.
Her Igenex Western Blot had 2 positive IGG bands, and 1 positive IGM band. She was also positive for Babesia Duncani. Although not CDC positive for lyme, the LLMD started treatment based on her textbook lyme and coinfection symptoms. All symptoms became even worse, and she developed some new ones. She missed over a year of school.
I was the person that was responsible for finding a cure for her illness. I became her full-time caregiver while my wife worked. I averaged about
10-12 hours/day for about
1.5 years on the Internet to find the solution. I was a madman who was trying to find a solution for our little girl who appeared to be dying.
We increasingly became disillusioned when her symptoms became worse during these early months of treatment. We felt that her misery became worse because of herxheimer reactions, and also because of the toxicity of the ABX themselves. I eventually became aware that many chronically ill lyme patients carry a lot of parasites. Failure to address this issue can hinder any progress in treating the lyme and other coinfections. We took Heather back for Assyra testing (not her LLMD). It revealed that she was loaded with parasites of several types. Her gallbladder was loaded with parasites also. This would account for the terrible gall bladder pain that she was experiencing.
We ended up firing the first LLMD after only 5 months of treatment for several reasons. The main reason is that she SHOULD have known that parasites are a potential major issue for any chronically ill lyme patient. That was inexcusable. Another issue is that Heather had just recently been prescribed Biaxin. After only a few days Heather started to have what I would call psychotic episodes. She became hysterically paranoid and imagined all sorts of frightening things. An uninformed person would have judged that she belonged in a mental institution. We took her off of all ABX at the same time that we fired the LLMD.
Heather felt a lot better within a few days. We had recently started to implement a lot of alternative approaches such as Ionic Foot Detox and Epsom Salt/H2O2 baths. We also started using elements of the Cowden and Buhner protocols. I was able to devise a way to eliminate her longstanding neuropathy/hypersensitivity in her right arm and shoulder. My wife and I had a debate about
whether we should restart ABX treatment under the care of another LLMD. My wife won the debate and we found another LLMD who was an integrative physican of conventional and alternative approaches.
The Journey, The Second Treatment With the Second Doctor
The second LLMD was very impressed with our level of knowledge about
the illness and what we were able to accomplish on our own. His advice was to continue everything that we were currently doing to heal Heather and that he would add 2 ABX to the treatment. We consented to following his advice and Heather slowly but steadily improved. She remained on ABX for 2 months beyond the last symptoms. Her total time using ABX was 14 months with a 6 week “rest” in the middle of that period. When she started treatment with the new LLMD her CD 57 test result was 30. This physician prescribed things for her thyroid and immune system, and also treated her for parasites again to be sure that we got them all. She received “Myers Cocktails” by IV for 17 consecutive weeks to promote healing and energy.
Heather started to relapse about
2 months after treatment had stopped. This LLMD prescribed Low Dose Naltrexone (LDN) in an attempt to rejuvenate her immune system. He also prescribed an herbal product called “Spiro” that is used in Brazil to combat spirochital infections. We tried his approach for about
2 months and discontinued using them at that point. Her old symptoms were slowly returning and she was missing school and her swimming again. The doc ran a second CD57 test about
8 months after the first one and it had only risen to a 32. It was obvious to us that Heather’s immune system had not recovered, although we had spent a small fortune on the best supplements that were known to promote immune function. We never returned to that second LLMD. We had spent about
7.5 months with him.
The Journey, Embracing a Realistic Paradigm
When Heather started to relapse I started to reevaluate our entire approach to finding a lasting solution. We are not wealthy people, but my wife and I had already decided that we would sell the house, if needed to pay the medical expenses, because insurance only had paid a small fraction of our total expenses to date. Fortunately we never had to resort to that, as we were able to borrow against our 401K retirement accounts.
I had read thousands of patient blogs on several forums and had gained strong impressions about
the prognosis of those who have been chronically ill for many years. I felt pressed by several issues. First, she was now 14.5 y.o. and her childhood was passing by. Second, she loved competitive swimming. Her dream was to win a swimming scholarship and swim in a D1 swimming program. Was that even close to being attainable anymore? Third, logic dictates that the longer that a person is sick, there is increasingly more of a chance that there will be permanent damage to the body. She could be a permanently debilitated ill person for the rest of her life if we don’t find an effective solution.
I had to ask myself- what will we do differently this time that we didn’t do the first time around? I knew that we wouldn’t be able to kill every last microbe in the body, and what about
reinfection? I felt that the answer was to be found in the restoration of the immune system, and that it entailed a lot more than simply ingesting a nutritional supplement(s). We had already used glutathione, NAC, acai, goji, mangosteen, and a host of other products that I have forgotten the names of. They all failed.
I came across a completely different treatment paradigm. This approach views the human person as comprised of body, mind, and spirit. Each person should be treated in a way that corresponds to the way that we have been designed. That means that it is counterproductive to treat people with toxic substances. I am not absolutely against all uses of ABX. However, it is evident that some people cannot continue indefinitely on them when they are chronically ill. My daughter was one of these people.
This paradigm was a new concept for me. This paradigm also views human beings as having an energetic component that is fundamental to our physiology and being. Conventional medicine has almost completely overlooked this reality in the past, although I am seeing more and more MD’s speaking to this issue recently. Homeopaths, Chiropracters, and Accupuncturists subscribe in part to this paradigm. The clinic that healed my daughter presented a much more comprehensive approach to restoring energy flow in the body. I felt that it was the missing link to my daughter’s situation.
Heather was moderately ill (compared to the state that she was in at her worst point) by the time that we took her to Dr. J. at the Hansa Center about
4.5 months after her last dose of ABX. She was two months away from turning 15 y.o. It was 6.5 years since her journey started with the tick bite.
The Journey, The Third Treatment With the Third Doctor
She spent 2 weeks at the Hansa Center. All of the tests were based on energy frequencies and thermographic profiles. She was judged to have Borrelia, Babesia, Bartonella, Erlichiosis, HHV6, and West Nile Virus. She received a lot of structural realignment and lymphatic pathway treatments. There were daily energetically based treatments to restore communication within the body. These included color, sound, and laser treatments with various gemstones. There were also herbal, homeopathic, and essential oil treatments as well as thorough detoxification. Heather was virtually symptom free before the 2 weeks were over. Her gall bladder pain had also completely resolved.
On the first day at the clinic Dr. J. told us that Heather had a severe deformity of her jaw that caused Autonomic Nervous System (ANS) dysfunction, and consequently suppressed her immune system. We already knew this because her pediatric dentist had told us that her jaw could only be surgically repaired by breaking her jaw and reshaping it back together with titanium plates and screws. We rejected this surgical approach and were relieved when Dr. J. told us that a specially trained “Biological Dentist” could correct that problem non-invasively.
Several months later we took Heather to a Biological Dentist that fitted her with a dental appliance that slowly corrected her jaw shape, repositioned her tongue, and restored her bite. This approach is called “Oral System Balancing”. Within hours of first wearing the appliance she heard a loud “pop” and her sinuses drained. A lot of infected mucous material drained and her ears cleared as well. After her bite improved a lot with the OSB appliance then braces were properly applied. They were adjusted every couple of weeks. The dentist always made the adjustment with EEG, EKG and other monitors to see how the adjustments were impacting the Autonomic Nervous System (ANS). Each adjustment was followed up with a Cranio-Sacral treatment to adjust the structures of the head and jaw. The dentist had to strike a balance between cosmetic appearance and ANS function. The result has been cosmetically pleasing and immune enhancing. Few dentists know how to do this and they just send you to the surgeon or crank up the braces with utter ignorance of what it is doing to your immune system and body. The OSB and braces phase took about
2.5 years from start to finish. Heather has not even caught a cold during the last year! During this time she has not used antimicrobials of any sort! She would not have gotten to this healthy state unless Dr. J. had told us what to do.
Dr. J. determined that Heather’s body was producing low amounts of Nitric Oxide (NO) about
1.5 years ago. NO is required to signal the layer of smooth muscle cells lining the arteries to dilate when a greater demand is placed upon the cardio vascular system. It has immune ramifications as well. Dr. J. prescribed an herbal supplement that stimulates NO production when it is needed. He also prescribed a supplement that serves as a precursor from which the NO is made. This improvement kicked her swimming performance up a notch. We used a special litmus paper test kit to monitor her NO levels. We discontinued the NO producing supplements after about
a year when normal NO production began in her body.
The last issue to be addressed is adrenal function. Dr. J. had been treating Heather’s adrenals with glandulars and supplements. Even so, Heather felt that her energy levels were still not quite what they should be. Dr. J. suggested that she take the 24 hr. saliva test to test cortisol levels. It revealed that she had low cortisol levels. Dr. J. then referred her to an MD (actually an LLMD) that has the skills to diagnose glandular function and to prescribe medication if needed. This doctor wrote orders for blood to be drawn for a variety of tests including an ACTH stimulation test. The test revealed that her Adrenal glands were able to function, but that they were insufficiently receiving the hormonal message to do so. She was diagnosed with “Secondary Adrenal Insufficiency” and prescribed low dose bio-identical hydrocortisone. It has made a world of difference in her energy levels for swimming and daily living. That improvement took place of January of this year (2013). It appeared that all of her problems have been addressed and that she was ready to go to college. The healing phase has taken about
3 years in total. It is yet to be seen whether her adrenals will someday be able to function normally without the necessity of taking the bio-identical replacement hydrocortisone.
The stage was set for the most recent development in Heather’s journey. She is now 18 y.o. and almost 10 years since the initial tick bite.
The Journey, A Small Recent Blip (August, 2013)
The recent CDC positive Western Blot test is not necessarily a setback, but it is a reality of life. Heather has not been experiencing anything but health and energy to chase her dreams. I find this recent development to be interesting and worthy of discussion.
Heather had a very active spring and summer this year. She graduated at the end of the school year and didn’t miss a party! Some of the activities were in the outdoors and she picked up a lot of mosquito bites. Could there have been any tick bites as well? Nevertheless there was never the slightest sign of any illness whatsoever. Her competitive swimming results went fairly well during that time.
We had two health care objectives that we wanted to achieve for Heather before we took her to college to start her freshman year. The first is that my wife took her back to the Hansa Center to have her health checked out and “fine-tuned” to prepare for the demands of college swimming. My wife also took her to an integrative physician (MD) for the required college physical. We also wanted to get a report of her health from the conventional blood testing perspective.
The first doctor’s visit was here in our local area at the end of July with Dr. S. (LLMD). He ordered a lot of tests including the Western Blot for Borrelia and the CD57 test. The second doctor’s visit was with Dr. J. at the Hansa Center on August 7-9. The blood was drawn for Dr. S’s tests on August 8th while Heather was in Kansas being treated by Dr. J.
Dr. J’s testing revealed a low level of Borrelia and co-infections in Heather’s body. He was not at all concerned about
that and prepared some herbal tinctures for her to take which would provide information to assist her immune system to function optimally in combating the infection. Dr. J. commented that Heather had much more muscle tone since he had last seen her. He also was pleased with the overall progress that her body had made in regard to health and vitality. When I heard about
the positive tests I was only mildly concerned about
the positive Lyme and co-infection tests. I had good reason to trust Dr. J’s judgment.
We took Heather to college on Aug. 14th and got the blood test results back on approximately Aug. 20th. I was not surprised to see that the Western Blot (WB) was CDC positive. I was shocked to see that the CD57 test result was a 29. I had thought that this test was a reliable indicator of how competent that a specific part of the immune system is in handling Borrelia. I was very upset thinking about
the fact that we had taken Heather to college only a few days ago and that the CD57 test result is predictive of a relapse! My “mild” concern had morphed into a “grave” concern.
My wife got on the phone and arranged a telephone consult with Dr. S. He told her that there was nothing to worry about
. He said that the vast majority of Heather’s test results were not only good, but that they were optimal. He said that she is healthier than 99.9% of his patients! He also said that he had received a grant to do a study on the CD57 test. The conclusion of his study was that the CD57 test is not always a reliable indicator of immune status regarding susceptibility to Borrelia. He said that he was amazed at how well that she was currently doing in light of how sick that she was for several years. His advice was to use Samento and to also take a product called Transfer Factor Lyme Plus which is reported to boost the CD57 complement of the immune system. Unknown to Dr. S., Heather was already taking a Jernigan product (for 2 weeks) that includes cat’s claw, which is the whole raw herb from which Samento is made. We chose to continue to use the Jernigan product.
The Journey- My Conclusion
I was forced to reassess my grave concern about
the situation. Since two very competent physicians viewed Heather’s situation as being completely under control at this time…. Who was I to worry? When I discarded the CD57 reading and looked at the bigger picture, then a different conclusion emerged.
Dr. J. was not able to detect any infection in Heather for about
3 years. I had jumped to the conclusion that the new CDC positive test results combined with the low CD57 result indicated that she was in the midst of a relapse. My erroneous conclusion was nothing more than a foolish leap into an abyss. I was dead wrong and my reexamination of the facts showed me why. Following are the pertinent facts as I perceive them:
1) Heather has been perfectly healthy for about
2) Dr. J's Bioresonance testing was recently positive after being negative for about
3) She received many mosquito bites during the spring and early summer.
4) Her recent Western Blot test result was IgG (all negative), and IgM (2 positive bands). This may indicate a more recent reinfection, and probably not a relapse of the initial infection from many years ago.
5) The results of all other tests were optimal or within normal, i.e. Vit. D25, Vit. B12, WBC, liver function, IgG subclasses, albumin, globulin, etc. etc.
6) Inflammation marker specific tests were optimal.
It seems illogical and unlikely that Heather has suffered a relapse in the context of a positive 3+ year trend towards health and vitality. It seems much more likely that she has experienced a reinfection by way of the insect vector- namely mosquitoes and/or possibly tick(s).
Once again I have to agree with Dr. J’s opinion that the mere presence of the pathogen does not define the illness. In fact, in Heather’s case, there is no illness! The presence of the pathogen is a secondary issue. Our treatment approach chiefly centers on immune support/encouragement. I feel that it would be counterproductive to attempt to bypass the immune system by lodging a massive antimicrobial attack on the pathogens. I believe that it is desirable to view Heather’s current situation as a learning or corrective exercise for her immune system. My opinion is that the chief underlying issues of why she became ill years ago has already been addressed and corrected, and that the pathogens are only one of several factors. That makes the current situation a lot easier to manage. It also allows this uptight father to relax and chill out!
Last but Not Least
Forum rules do not permit me to delve very far into what I perceive to be the spiritual nature of Heather’s journey. As a Christian I would like to say that we sought answers from our God at the earliest opportunity, but sadly, we did not. He saw fit to grant understanding to us when we eventually came to Him in dependent prayer. We learned some things about
Lyme and co-infections, but we learned even greater things about
God’s love and faithfulness. For me, it is perhaps a misnomer to refer to the “Lyme Journey”. It is a life journey. Looking back we can embrace the past, knowing that it has accomplished a greater good in us.
Post Edited (Heathersdad) : 10/8/2013 3:44:55 PM (GMT-6)