Letter to a friend
To: Whom It May Concern
From: Steve & Bea Seibert
Subject: Lyme Disease Info
Date: January 9, 2012
Steve asked me to give you some basic info to help your daughter.
First off – here is my email address if you or your daughter have any questions. It might take a couple of days, but we will get back to you.
Next – If we can’t answer your questions – this is the most active patient’s forum on lyme disease – they can provide doctor referrals or give feedback on docs. A very busy forum that I spend a lot of time on.
Steve said your daughter had been diagnosed with lyme and babesia. A lot depends on the species of babesia as to how easy that is to treat. Babesia duncani seems to be much more resistant to meds than other species. For example – people with malaria take 1 pill of malarone for maybe 10 days – Steve has been on 4 to 6 pills daily for a year plus artemesinin (herb of choice for babesia) and lariam and doxycycline and flagyl and just added ivermectin to the mix. Plus we are waiting for another herb to get here from Africa.
Another very important point – I would not be surprised if your daughter doesn’t have at least one more coinfection. The vast majority of tickborne disease patients who have been ill for longer than a couple of months usually also are infected with bartonella or BLO (bartonella like organism).
Personally one of the things I usually tell new patients is that there are 2 or 3 major rules to getting better. First is to find the best doc you can find – someone that treats based on ILADS guidelines. 2nd is to try to diagnose all your infections – does the current diagnosis explain all of the symptoms? 3rd would be that generally nutritional supplements and herbs will also be needed in addition to antibiotics and anti-malaria meds.
Also new patients need to start keeping a diary. List daily meds and any new supplements plus any major changes in symptoms – new or old symptoms. Keeping notes is very important to helping the doc sort out all the potential issues.
And the critical thing to remember during treatment is to ONLY MAKE ONE CHANGE AT A TIME – only add 1 new med or supplement. Many people also start slow at ¼ what is considered the therapeutic dose and work up. The herxheimer reaction is a real medical issue and Steve has landed in the ER and hospital numerous times even when we try to be cautious when trying new meds
Tickborne patients frequently have other issues to deal with as well. Some have nutitional deficiencies. Others have G.I. parasites. Some have thyroid or hormonal issues. Some have genetic problems such as methylation cycle issues or KPU (a form of porphyria triggered by infections). Clotting disorders are not uncommon. Viral issues could be present if the immune system is run down – CMV, HHV6, EBV, CPN etc. And of course antibiotics can cause c. difficile or candida issues. Adrenal fatigue can become severe and lead to POTS. Other stealth infections must be considered in the differential diagnosis – mycoplasma and brucella among others.
If you don’t see noticeable progress within 6 months or definitely within a year then you need to start looking for other infections or compounding factors in my opinion. Other possibilities of things to check into include toxic mold and heavy metal (mercury or lead) toxicity.
I am sure I am leaving some things out, but the most important thing to remember is that lyme is a multisystemic illness. It likes to attack the weakest systems in the body. For Steve that was his G.I. and his brain (he had prior mercury issues which probably weakened his system, plus he does have a genetic methylation issue).
If you haven’t already learned this, then it won’t take long to discover that chronic lyme and tickborne infections are probably some of the most controversial medical diagnoses around. There are lots of conspiracy theories as well. Many tickborne patients are somewhat paranoid about protecting their doctors names, but they are usually very generous with their time and will make a real effort to help. For instance a perfect stranger came to visit Steve in the hospital in New York City once when I posted on the LymeNet forum that he had been admitted following a doctor’s appointment. That person helped us schedule another appointment with a different doc nearby.
I think Steve said that cognitive issues were one of your daughter’s main issues. There are numerous possible causes and potential treatments to try. First – if she has light or sound sensitivity then brain inflammation is most likely very much an issue. IV antibiotics could be required if orals do not resolve these symptoms. One of the best tests that is under used by many docs is a brain SPECT scan. Steve had his done at Columbia Presbyterian Hospital in New York City. They can identify patterns that would be present in patients with anxiety or depression or dementia or low grade hypoperfusion as seen in many tickborne patients.
Memory issues may be potentially helped by increasing blood flow to the brain with supplements like vinpocetine or gingko or high dose niacin or high dose arginine. Or increased antioxidants may be needed – high dose CoQ10 or vitamin C or pycnogenol (pine bark extract). Also increasing the good fats will let the brain heal – fish oil and phosphatidylcholine can help. Ox bile supplements can improve fat absorption. One of the best detox supplements for the brain is glutathione – can be given IV or by suppository. ALAmax is a very good brand of alpha lipoic acid which helps the body to increase production of glutathione – best price I have found is from www.HealthWarehouse.com
If the brain and nervous system are involved then the amino acids can get out of balance and neurotransmitter imbalances can occur. Things like tyrosine, l-theanine, SAM-e or resveratrol (Japanese knotweed source) may be helpful. The B vitamins – especially B12 and folic acid are crucial as well – especially if babesia is involved.
Lyme and babesia deplete the body of certain critical nutrients including magnesium and B12 and potentially iron among others.
As far as testing goes – many new tests have been developed in the last 5 years from various specialty labs.
Galaxy Diagnostics is the best lab for bartonella testing – www.GalaxyDX.com
Must be off antibiotics for at least 4 weeks to get an accurate test result. One of the lab’s founders (Dr Breitschwerdt) is a veterinary and his father died from bartonella. He has written many journal articles on bartonella. A couple of these are linked on the website.
IGeneX is considered the best lyme lab. www.IGeneX.com
New and somewhat controversial testing – www.FryLabs.com
Has found a new protozoa which only he can test for with PCR. Supposedly kind of a cross between malaria and filarial worms.
Spirostat Technologies is another new lab in Texas. www.SpiroStat.com
Tests for many different strains of borrelia.
And Steve’s favorite lab located in Maryland. – www.ClongenLab.com
Bloodslides cost $195 plus $50 for shipping. Finds things which do not show on antibody tests.
There are at least 3 other test labs I know of that have new lyme testing – one cultures the spirochetes, another looks at immune responses and the 3rd one looks for different proteins than those normally tested for. Let me know if you need those links also.
Testing for the coinfections seems to be the new hot topic since many symptoms overlap and the coinfections often require different antibiotics from lyme.
Several very good books have been released in the last 5 years. Here are the top 5 in my opinion in no particular order.
Healing Lyme by Stephen Buhner. Herbal treatment and one of the most in depth comprehensible explanations of borrelia and other coinfections. Website of the author with patient questions and answers – http://BuhnerHealingLyme.com
The Lyme Disease Solution
Cure Unknown – covers the political and controversial aspects of treatment.
Insights into Lyme Disease Treatment – 13 docs explain their specific treatment methodologies. -- first chapter free online – www.LymeBook.com/Steven-Harris
Over the Edge – novel from a patient perspective. – www.Lyme-OverTheEdge.blogspot.com
A few more links of interest –
www.LymeMD.blogspot.com – Dr J in Rockville, MD (see card attached)
Rebecca Snow is an herbalist Steve has consulted. Offices in a couple of different locations in Maryland. Will do phone consults after the first in-patient office appointment. Very reasonable rates. Let me know if you need contact info – she moved her practice and her website seems to have changed as well. She wrote a well researched paper regarding herbal treatment of tickborne diseases and presented it at one of the herbal conferences.
www.NatCapLyme.org – National Capital Lyme is a very active patient support group in the D.C. area with other chapters in Virginia.
www.LymeInfo.net – A very good index of all things lyme related.
www.PublicHealthAlert.org – A monthly online and in print newspaper related to lyme and other chronic stealth infections. Includes doctor interviews and more. Online version is free and includes complete archives.
I am going to close by providing a link to a lyme cartoon. I am sure your daughter can relate if she has been sick for very long or seen standard AMA docs. – http://goanimate.com/movie/0XCA4kvs8vk4?utm\_source=facebook
Let Steve or I know if we can be of further help.