posted
I am trying to help a dear friend that is fighting lyme. She has many co-infections also. She has been under the care of Dr. R (OH) for almost a year, with no improvement.
She is taking about 80 meds/supplements daily. She spends most of her time in the bathroom or bed. She has a lot of herx.
She has been having a lot of shortness of breath and chest pain, but we are never sure when we should take her to ER.
She has gone many times, and they find nothing. I am so worried that she will go to sleep and not wake up.
What can I do to help her? What doctor can we see?
Dr R is LLMD, not sure if that is enough.
Posts: 50 | From KY | Registered: Jan 2016
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
Hi AngieGigi,
Your screen name should be "AngelGirl" for being such a supportive friend and being involved with her treatment!
I'm so sorry to hear that she is doing so poorly, and is not improving with treatment. Most times it takes time to find the combination of drugs, supplements, treatments that helps. Most of us can vouch for that!
There is no set treatment for every patient. In fact, sometimes what helps one patient will do nothing for the next patient; or even worse, may make them worse!
Usually what is happening in these cases is that they (and the doc) are not homing in on the dominant infection. It sounds to me like perhaps she is dealing with Babesia because of her shortness of breath and chest pain.
That being said, she also needs to be faithful with detoxing. If she is killing the bugs, the cellular debris needs to be gotten out of the body. (And that will usually clear a herx).
Here is a great video (but hard to watch) of a woman that was so very sick but got completely well by finding the dominant infection and ALSO by realizing she needed to detox, too.
That all being said, sometimes taking so many things can muddle the picture concerning what is really helpful and what is not. But, please give her liberty to discern this with her doc and by listening to her own body.
Also, after a year of not making progress it is probably time to seek out a more experienced LLMD. Most of us have had to see more than one LLMD to get on a path to healing. To find a different doc, try posting in the "Seeking a Doc" part of this site and specify where you would like to find one.
Being an advocate is not easy. It takes keen discernment to know how to help. You are doing a GREAT job!
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If she has had no improvement in a year, it is definitely time to find a lyme specialist who knows more.
Let us know what states she could travel to and we can give you names. Could she come to the Washington, D.C. area? She would only have to come once every 3 months and could do telephone appointments the other months.
When a person is so very sick, it is important to get the absolute best lyme doctor as possible.
God bless you for helping her!! You are a good friend.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
We could certainly travel. I am willing to buy tickets and travel with her to get her better. The doc that she has been seeing will only see her every 3 months, and doesn't make any changes other than adding or suggesting more supplements that she has to mail order for. We are willing to do what is suggested, but answers are hard to get. There has not been any kind of pinpoint of what exactly the primary infection is. I know the doc said she has H-lyporia or something like that and I read that it can cause heart issues. Angie does have very high B/P and her GP treats that. Please do send me a list of Good Doctors. Thanks, and God Bless you all for helping me. I will say, that through this journey, she has grown closer to God, and that is always a plus.
Posts: 50 | From KY | Registered: Jan 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you a name. We will help you here all we can. So glad you found LymeNet and you are willing to do this for your friend.
Get all of her test results for tick-borne diseases and take them with you to the lyme specialist.
Also, have a written record of the treatment she has received so far. The doctor will want to see that.
Also, a complete list of her current symptoms. Use the list in the Burrascano Guidelines pages 9-10 to help you. The document is here:
God blessed me by sending me to a doctor who cured me of lyme disease nearly 11 years ago now. So, I stick around LymeNet just to point others to the good doctors.
This is what I learned: The doc is the key to getting rid of this horrendous disease. Can't stress that enough.
Many doctors treat lyme disease, but very few know enough to get rid of it for a person. You have to get to one of those few.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The link in post directly above, by TF, for Burrascano's Guidelines, is an excellent template of sorts.
For further introduction into the complexities of diagnostics & treatment - and support measures:
posted
Thank you all for the help. I am so scared. My just called called to tell me he is taking Angie to ER. She has chest pain and shortness of breath. He said her words are not clear. So scared for them both.
Posts: 50 | From KY | Registered: Jan 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When she returns, she is likely to be very tender in all ways.
Of course, whatever the emergency, it could be something other than lyme / TBD (tick borne disease).
Shortness of breath is a major sign of babesia, though lyme can cause it and heart issues as well.
But there is no hospital - anywhere in the U.S. - that will consider lyme / TBD in the equation. No hospital that is properly good for a person with lyme / TBD.
And the ER is for the basics of urgent care, not diagnosis of chronic illness.
If her she "checks out fine" in their book, that is good. But it means very little to the bigger picture as the ER doctors likely have little training or knowledge about all the rest of this.
They may imply she's not really ill and may even be insulting. I was literally kicked out of an ER after a seizure as they said I was " trying to throw myself off the table" - and other ERs have been no less kind.
The ER can be a terrible place for someone with lyme. Yet, if it's a life threatening issue, they do have that kind of skill.
But beyond whatever happened there tonight, this is vital to keep in mind - to PREVENT even having to go to ER (hopefully)
you might find it on some streaming channels or at their site. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Also important to know if you are going to help - and I sure hope the ER did not give her steroids.
There are much better ways to help decrease inflammation (magnesium being one of those) but, too often, steroids are handed out like candy and they can really damage those with lyme / TBD:
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To help put into perspective, some detail here is excellent. Though not at all about lyme, this is one of the best reference resources on my bookshelf that has wonderful chapters, many graciously available through their website.
Understanding herbs and their nature, left side menu:
The ONE EARTH HERBAL SOURCEBOOK (Tillotson, et al)
He is a doctor of Ayurvedic Medicine; She a doctor of Oriental Medicine and Acupuncturist. The third co-author is a doctor of optometry. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you all so much. It is early morning and all I know about the ER visit is they said she is healthy once again. I will talk to my son later and update. In the mean time I will be reading all that you have suggested. Thanks.
Posts: 50 | From KY | Registered: Jan 2016
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I agree that she needs to see another LLMD.
Also, when you take too many supplements and meds, the body has to process all that. Eighty per day is a lot for the body to process.
H Pylori is also a bad infection that needs to be treated. It would seem that the follow up would be sooner than three months for that infection alone.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Low potassium... that is one thing they did tell her at ER. They gave her 2 potassium pills, a bag of IV fluid and told her to see her family doc to get a stress test and Echo scheduled. They gave her a RX for 2 weeks of potassium. My son told me that they were actually very nice to her. They could clearly see her shortness of breath, but the EKG and Chest X-ray was normal. I looked at the list of supplements from her current LLMD and there is no Potassium or Magnesium. Should she be on those supplements
Posts: 50 | From KY | Registered: Jan 2016
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posted
Magnesium is VITAL for just about EVERYTHING, especially the HEART!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Since I don't know what kind of supplements she is taking, it's hard to know, of course. Some supplements aimed to increase energy or for weight loss can cause sharp drops in potassium.
Some of what are sold as supplements are trash.
Some supplements are key & vital nutrients with properties that are very important to comfort and support during treatment. Herbal medicine has saved my life and thwarted many potential emergencies.
And, there are some products, everywhere, that can be counterfeit. Always check not just the source but the specific bottle, too, for any signs of tampering of differences from the manufacturer's website of the product.
If she might be trying to loose weight - or gain energy - it's best to never take any supplements for that. Adrenal support is better for the foundation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To get over an emergency, potassium pills can help but long term, diet is the best place to get this.
Find out the reason for the deficiency. Some Rx can lower both potassium and magnesium in the body.
Too much of some minerals can offset others, too.
As far as vitamins, minerals, IMO, it's best to get those from food when possible. For many who are very ill with lyme, it can be nearly impossible to shop, cook, eat well.
Potassium . . . foods -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One of the presenters here states that nutrients are not able to be absorbed where there is inflammation. Good point. A gluten-free diet is often very helpful to reduce inflammation.
And key herbs also help reduce inflammation.
While this is very detailed and my make your head spin - so don't dive in head first - glance over this for a frame of reference - to put into perspective the place of supplements with lyme treatment. This is an excellent site and the presenters here are tops, too:
An Integrative Approach to Chronic Infections and Tick-Borne Illness
Details Last Updated: 07 June 2015
Beyond Balance hosted a superb event entitled "An Integrative Approach to Chronic Infection and Tick-borne Illness" in Parsippany, NJ on May 16, 2015.
Susan McCamish is also the formulator of the many umbrella-like in nature herbal blends offered by Beyond Balance and ones that I personally use on a daily basis for my own continued health improvement.
The entire event was videotaped and is available through Beyond Balance for those that would like to listen to the full detail from each speaker which goes far beyond what I am able to represent here.
Susan McCamish presented "Advanced Application of Herbal Formulas for Use with Complex and Chronic Infections" and shared the following:
* You cannot absorb nutrition when the body is in a state of inflammation. . . .
. . . In some very sensitive patients, starting with a single herb such as Cat's Claw or Pau D'Arco may be necessary. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Here are a few of the things on her list that she takes daily
lymphomax, juice plus, vitamin D3, super omega3
artemisinin, cytoquel, proactazyme, thai go,
lobella, a-hp, curcumin
she is on RX for pain, oxycodone 5-325/3 day
losarran HCL for B/P
and Zoloft for anxiety, all Rx from GP not LLMD
Posts: 50 | From KY | Registered: Jan 2016
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I think the only essential vitamins are magnesium,zinc, & maybe potassium, which is hard to get in supplement form since most pills are 3% of daily amount. Maybe glutathione, n-acetylcholine, or milk thistle for liver support. Just one of those 3....not all. And also, no acetaminophine if possible.
After spending tens of thousands on supplements, for me they're a waste of $ unless she shows definciencies in blood. I'd put my money in other places like colonics or coffee enemas. Instead of toxifying and taxing the liver, I'd have her concentrate on more out, less in. Even turmeric was a waste for me, although it's benefits are undeniable.
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